The scary stuff!!!

[PinkGirl]

In Ceese's thread Do you ever wonder WHY, Debbie posted this:

In my research I have found that most BC patients do recurr at some point in their life, be it 5 years or 20 years. It always come back.


How come we never talk about this????

[dlaxague]

How come we never talk about this????

Probably we don't talk about it because it's not true. I'm surprised that it slipped thru unchallenged in the other thread.

Another Debbie

[mts]

Here is a link to some info regarding dormant tumor cells.
This was also a subject of great interest at the Era of Hope...
The DoD has funded a study that so far is showing dormant cells in mice that "wake-up" after being in their sef induced sleep. The overall take is that we have these dormant cells and have yet to find the trigger that perks them up. The cells are somehow immune to chemo agents. I will try to find the Era of Hope study and post later.

Here is some aditional info not related to the Era of Hope study:

http://cancerres.aacrjournals.org/cgi/content/abstract/67/9/4491

Maria

[mts]

Although many of us will recur I think it notes mention that many of us will not. I, for one -don't plan to.
Staying informed and aware of the risk is important for everyone regardless of how we perceive what cancer may or may not do to us in the future.
During the dormant cancer cell presentation, I asked if it was studied where chemo was given to healthy women to kill the dormant cells and the response was that these cells are highly resistant to current chemo agents and still the healthy tissue was additionally damaged. So, the scientists are trying to develop an agent that will cause cell apoptosis without causing harm to healthy cells. Isn't that what a lot of science is trying to do anyway ?
Here is the Era of Hope study regarding dormant tumor cells:
http://cdmrp.army.mil/bcrp/era/abstracts2008/bc045699%2D1.pdf


If you want to deluge yourself with additional Era of Hope abstracts- log on to: http://cdmrp.army.mil/bcrp/era/abstracts2008

maria

[Becky]

I meant to comment and didn't. I should have. Depending on your stage, far more women will NOT recur. Even women who are diagnosed at Stage 4 have almost a 50% shot of not recurring after initial successful therapy.

There are many theories in regard to cancer in general. I am sure ALL are true -

One is that chemo completely anniliates everything and you are cured. I am sure this is true for many people.

Another is that some cells become dormant. They may awaken or they may not. We know this is true, especially for those who recur much further out from treatment (years and years).

Another is the stem cell theory which can hold true for upfront recurrences and later ones.

Regardless, taking good care of yourself results in a strong immune system that helps prevent recurrence and completely new cancers. This is what you should dwell on - good health to live your life to the fullest (being disabled by any disease state will really screw up any future plan).

By the way - in my local support group we have many, many 20+ yr survivors. Those that did pass away died from something else.

[lilyecuadorian]

Becky , I love how you explain things !!!!

[goops]

Becky -

Even women who are diagnosed at Stage 4 have almost a 50% shot of not recurring after initial successful therapy.

What do you base that on? I thought it was very rare for a stage 4 person to get (and stay) cancer free. Since I have just be diagnosed as stage 4, I would love it if what you say is correct.

[Unregistered]

Becky,

I think what you said regarding the stage 4 recurrence rate must be a typo. Almost all people diagnosed as stage 4 will recur.

Jill

[Jackie07]

[Abstract]

Risk factors for late relapse and death in patients with early breast cancer.

C GK (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22C%20GK%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), M B (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22M%20B%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), B Z (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22B%20Z%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).
Adjuvant treatments reduce the risk for recurrence and death from breast cancer; but even 10-15 years after diagnosis, these risks persist. The aim of our study was to identify prognostic factors for relapse and death in the second decade after primary surgery. Patients with early breast cancer treated from 1983-1987 (n=1035) were included. Patients' characteristics, tumor prognostic factors, treatments, data on recurrence and death were obtained from patients' charts and our cancer registry. Median follow-up was 17 (1-23) years. At 10 years after surgery, 515 (49.8%) patients were alive and of them 432 (41.7%) were relapse-free. Of the 432 patients being alive and relapse-free at 10 years 153 (35.4%) had an event thereafter, of them 38 (25%, 9% of all) had a relapse of breast cancer. For this period only the presence of lymphovascular invasion (LVI) and positive estrogen receptors (ER) were found as independent unfavorable prognostic factors for relapse-free (HR 2.09, p=0.007; HR 1.50, p=0.021, respectively) and overall survival (HR 2.15, p=0.006; HR 1.41, p=0.05, respectively) while tumor size, grade and nodal status had no prognostic significance. Positive ER and LVI are independent prognostic factors for relapse and death in the second decade after surgery in patients with early breast cancer. Key words: breast cancer, estrogen receptors, late relapse, lymphovascular invasion

[Jackie07]

Overview of resistance to systemic therapy in patients with breast cancer.

Gonzalez-Angulo AM (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Gonzalez-Angulo%20AM%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Morales-Vasquez F (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Morales-Vasquez%20F%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus), Hortobagyi GN (http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Hortobagyi%20GN%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus).
Department of Breast Medical Oncology, Unit 424, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Blvd., Houston, Texas 77030, USA.
Breast cancer is the most common cancer and the second leading cause of cancer death in American women. It was the second most common cancer in the world in 2002, with more than 1 million new cases. Despite advances in early detection and the understanding of the molecular bases of breast cancer biology, about 30% of patients with early-stage breast cancer have recurrent disease. To offer more effective and less toxic treatment, selecting therapies requires considering the patient and the clinical and molecular characteristics of the tumor. Systemic treatment of breast cancer includes cytotoxic, hormonal, and immunotherapeutic agents. These medications are used in the adjuvant, neoadjuvant, and metastatic settings. In general, systemic agents are active at the beginning of therapy in 90% of primary breast cancers and 50% of metastases. However, after a variable period of time, progression occurs. At that point, resistance to therapy is not only common but expected. Herein we review general mechanisms of drug resistance, including multidrug resistance by P-glycoprotein and the multidrug resistance protein family in association with specific agents and their metabolism, emergence of refractory tumors associated with multiple resistance mechanisms, and resistance factors unique to host-tumor-drug interactions. Important anticancer agents specific to breast cancer are described. Breast cancer is the most common type of cancer and the second leading cause of cancer death in American women. In 2002, 209,995 new cases of breast cancer were registered, and 42,913 patients died of it. In 5 years, the annual prevalence of breast cancer will reach 968,731 cases in the United States. World wide, the problem is just as significant, as breast cancer is the most frequent cancer after nonmelanoma skin cancer, with more than 1 million new cases in 2002 and an expected annual prevalence of more than 4.4 million in 5 years. Breast cancer treatment currently requires the joint efforts of a multidisciplinary team. The alternatives for treatment are constantly expanding. With the use of new effective chemotherapy, hormone therapy, and biological agents and with information regarding more effective ways to integrate systemic therapy, surgery, and radiation therapy, elaborating an appropriate treatment plan is becoming more complex. Developing such a plan should be based on knowledge of the benefits and potential acute and late toxic effects of each of the therapy regimens. Despite advances in early detection and understanding of the molecular bases of breast cancer biology, approximately 30% of all patients with early-stage breast cancer have recurrent disease, which is metastatic in most cases. The rates of local and systemic recurrence vary within different series, but in general, distant recurrences are dominant, strengthening the hypothesis that breast cancer is a systemic disease from presentation. On the other hand, local recurrence may signal a posterior systemic relapse in a considerable number of patients within 2 to 5 years after completion of treatment. To offer better treatment with increased efficacy and low toxicity, selecting therapies based on the patient and the clinical and molecular characteristics of the tumor is necessary. Consideration of these factors should be incorporated in clinical practice after appropriate validation studies are performed to avoid confounding results, making them true prognostic and predictive factors. A prognostic factor is a measurable clinical or biological characteristic associated with a disease-free or overall survival period in the absence of adjuvant therapy, whereas a predictive factor is any measurable characteristic associated with a response or lack [cont'd on next posting]

[Jackie07]

lack of a response to a specific treatment. The main prognostic factors associated with breast cancer are the number of lymph nodes involved, tumor size, histological grade, and hormone receptor status, the first two of which are the basis for the AJCC staging system. The sixth edition of the American Joint Committee on Cancer staging system allows better prediction of prognosis by stage. However, after determining the stage, histological grade, and hormone receptor status, the tumor can behave in an unexpected manner, and the prognosis can vary. Other prognostic and predictive factors have been studied in an effort to explain this phenomenon, some of which are more relevant than others: HER-2/neu gene amplification and protein expression, expression of other members of the epithelial growth factor receptor family, S phase fraction, DNA ploidy, p53 gene mutations, cyclin E, p27 dysregulation, the presence of tumor cells in the circulation or bone marrow, and perineural and lymphovascular space invasion. Systemic treatment of breast cancer includes the use of cytotoxic, hormonal, and immunotherapeutic agents. All of these agents are used in the adjuvant, neoadjuvant, and metastatic setting. Adjuvant systemic therapy is used in patients after they undergo primary surgical resection of their breast tumor and axillary nodes and who have a significant risk of systemic recurrence. Multiple studies have demonstrated that adjuvant therapy for early-stage breast cancer produces a 23% or greater improvement in disease-free survival and a 15% or greater increase in overall survival rates. Recommendations for the use of adjuvant therapy are based on the individual patient's risk and the balance between absolute benefit and toxicity. Anthracycline-based regimens are preferred, and the addition of taxanes increases the survival rate in patients with lymph node-positive disease. Adjuvant hormone therapy accounts for almost two thirds of the benefit of adjuvant therapy overall in patients with hormone-receptor-positive breast cancer. Tamoxifen is considered the standard of care in premenopausal patients. In comparison, the aromatase inhibitor anastrozole has been proven to be superior to tamoxifen in postmenopausal patients with early-stage breast cancer. The adjuvant use of monoclonal antibodies and targeted therapies other than hormone therapy is being studied. Interestingly, some patients have an early recurrence even though they have a tumor with good prognostic features and at a favorable stage. These recurrences have been explained by the existence of certain cellular characteristics at the molecular level that make the tumor cells resistant to therapy. Selection of resistant cell clones of micrometastatic disease has also been proposed as an explanation for these events. Neoadjuvant systemic therapy, which is the standard of care for patients with locally advanced and inflammatory breast cancer, is becoming more popular. It reduces the tumor volume, thus increasing the possibility of breast conservation, and at the same time allows identification of in vivo tumor sensitivity to different agents. The pathological response to neoadj uvant systemic therapy in the breast and lymph nodes correlates with patient survival. Use of this treatment modality produces survival rates identical to those obtained with the standard adjuvant approach. The rates of pathological complete response (pCR) to neoadjuvant systemic therapy vary according to the regimen used, ranging from 6% to 15% with anthracycline-based regimens to almost 30% with the addition of a noncross-resistant agent such as a taxane. In one study, the addition of neoadjuvant trastuzumab in patients with HER-2-positive breast tumors increased the pCR rate to 65%. Primary hormone therapy has also been used in the neoadjuvant systemic setting. Although the pCR rates with this therapy are low, it significantly increases breast conservation. Currently, neoadjuvant systemic therapy is an important tool in not only assessing tumor response to an agent but also studying the mechanisms of action of the agent and its effects at the cellular level. However, no tumor response is observed in some cases despite the use of appropriate therapy. The tumor continues growing during treatment in such cases, a phenomenon called primary resistance to therapy. The use of palliative systemic therapy for metastatic breast cancer is challenging. Five percent of newly diagnosed cases of breast cancer are metastatic, and 30% of treated patients have a systemic recurrence. Once metastatic disease develops, the possibility of a cure is very limited or practically nonexistent. In this heterogeneous group of patients, the 5-year survival rate is 20%, and the median survival duration varies from 12 to 24 months. In this setting, breast cancer has multiple clinical presentations, and the therapy for it should be chosen according to the patient's tumor characteristics, previous treatment, and performance status with the goal of improving survival without compromising quality of life. Treatment resistance is most commonly seen in such patients. They initially may have a response to different agents, but the responses are not sustained, and, in general, the rates of response to subsequent agents are lower. Table 1 summarizes metastatic breast cancer response rates to single-agent systemic therapy.
PMID: 17993229 [PubMed - indexed for MEDLINE]

[Jackie07]

Please note the pCR rate has increased to 65% with Herceptin. The statistics we see these days includes most patients who did not receive Herceptin. With Herceptin, Her-2 positive have become the most treatable breast cancer. We have become the lucky ones.

But just like all the advertisement would say, past performance is no guarantee and individual result may vary...

[StephN]

Hi -
Goops, being stage IV and NED for over 6 years now, I also wonder what the stats are for STAYING NED under the new drug treatments.

The nurses at my cancer center tell me that there are several women there like myself, as well as many who are stage IV active disease and fighting well.

I only know personally two others like myself who have remained NED for a long period. Althought there are a few on this site like Christine, Andi and a couple of others.

They must be still collecting current information from trial studies for stage IV. I know I am followed after being on a trial.

[mts]

This post only exemplifies how so much is known yet how little we understand cancer...

One more reason to make cancer a national priority that our elected officials have to bring to the level of attention equal to global warming... we all know that.

maria

[Vi Schorpp]

and thanks for bringing this up PinkGirl.

From Jackie's information, ....the presence of lymphovascular invasion (LVI) and positive estrogen receptors (ER) were found as independent unfavorable prognostic factors for relapse-free (HR 2.09, p=0.007; HR 1.50, p=0.021, respectively) and overall survival (HR 2.15, p=0.006; HR 1.41, p=0.05, respectively) while tumor size, grade and nodal status had no prognostic significance...

that's interesting because I had LVI and positive ER, and had no Herceptin. For those who had Herceptin, it appears to be more favorable.

[dlaxague]

Vi said: From Jackie's information, ....the presence of lymphovascular invasion (LVI) and positive estrogen receptors (ER) were found as independent unfavorable prognostic factors for relapse-free (HR 2.09, p=0.007; HR 1.50, p=0.021, respectively) and overall survival (HR 2.15, p=0.006; HR 1.41, p=0.05, respectively) while tumor size, grade and nodal status had no prognostic significance...

that's interesting because I had LVI and positive ER, and had no Herceptin. For those who had Herceptin, it appears to be more favorable.

Vi, the above is talking specifically about LATE relapse, after 10 years of no recurrence. The factors that increase risk for late relapse are not necessarily the same as the ones that increase risk for early relapse and early relapse is more common. Note that in the above article, they started with 1038 women diagnosed with primary cancer and based the ending stats that you reference on 38 women who recurred after 10 years. Not a very big number. Less than 4% (I am not strong in math). Plus, they are saying that "early treatment" (ie: chemo and I assume Herceptin) has no effect on late recurrence. 'Still trying to get my head around that one but this was discussed recently in another thread and made sense when I read the explanation.

Anyway, just wanted to make sure you saw the distinction between risk for "regular" recurrence within the first 10 years, when risk is highest for all of us, and "late" recurrence or relapse, when there are fewer women recurring but the risk factors affecting that have changed a bit.

Sorry no time right now to find that thread. Does anyone else remember what it was called?

Debbie Laxague

[madubois63]

Here is my two cents - I hope I don't upset anyone. Remember my history,n ho much I have over come, and that I am very upbeat and will fight this disease until the bitter end.

As of today, there is NO CURE FOR CANCER. End of story. I look forward to the day there is and I'll lead the parade. I know we re getting closer all the time. I believe the cancer will come back some time in the future, BUT it may not happen until after you have passed on from natural causes, heart disease, a car accident, whatever...Or like me, it comes back just after I reach some sort of normalcy - bamb! I think we can do things to help keep it at bay and should never forget that it lurks, but don't let it control you or take over your thoughts. Tell your doctor of all changes and take good care of yourself. Jmo

[PinkGirl]

Thanks for your thoughtful replies. I, too, don't want to offend anyone with my beliefs and I'm hoping that this is a place where I can be honest about how I feel.

I don't personally know anyone who has lived a long life after
being dx. with breast cancer. I have known friends and acquaintances
who had breast cancer and they all lived from 5 to 7 years. My
oncologist told me that he could give me a lot of statisitics but he
could not tell me what my outcome would be. I have read a lot about
the disease and have come to believe that it "usually comes back".
I hope I am wrong.

I enjoy your posts Madame DuBois. You always make me smile. I
so admire you for how you live with and fight this crappy disease and
manage to almost always stay in your "happy place". Thanks for the
reminder to not keep my shoulders up by my ears!

[Jackie07]

I personally know 4 women in my mid-size town (50,000) who had breast cancer treatment and are still alive and well. One is my former supervisor in the local public library. She found cancer a couple of years (1993?) after she had retired at the age of 63 in 1991. The other three are my church members: one is my sunday school teacher who had the surgery during her early 40's. She worked 20 more years after that and retired several years ago as the high school librarian. Another church member who had treatment in her 40's is also a retired school librarian.

I often wondered if the dust in the library or chemicals emited from the processed books or (?) had caused breast cancer to the 4 of us. But the third church member is a housewife all her life. Did she get it from the household chemicals? We don't know.

I think I've been optimistic because all these 4 ladies I've known for 22 years are all still alive and well...

[dhealey]

I have been a nurse for 25 years and all of my patients that were diagonsised with BC and many other cancers always at some point no matter the stage when diagnosised have a recurrence. That being said, that does not mean they die. Do to the many new drugs available now many continue to lead very active lives. But as I stated before at some point it will come back. As Mary anne states there is no cure. I did not mean to upset anyone by my comment, but I have done extensive research over the past twenty-five years following these patients and I do not know a one who did not have a recurrence. One woman was diagnosised a stage I and recurred 20 years later in the other breast and now has mets to her lungs. Sorry to have upset anyone.

[Jackie07]

That is why it is called 'cancer', isn't it? - like a crab with many legs...

And that's why when there's no symptom or evidence of disease, it is called 'remission'...

If I understand it correctly, when a disease is completely curable, it won't be called 'cancer'...

I always follow the verses stated in Proverb: Eat, drink, and be merry...

[RobinP]

To date there is no perfect cure for bc. However, that does not mean that some are not cured via chemo, surgery and other adjuvants. I know of several women who lived over thirty years with bc and died of something else. With drugs like Herceptin and other drugs coming out, more and more women will live longer with or be cured of bc. Let's think positive gals, and have hope for the best.

[Vi Schorpp]

Debbie L. for the clarification...re-reading, it does make sense. The distinction you pointed out between regular and late recurrence is well-taken. Thank you.

PinkGirl, the first woman I really knew who had breast cancer was 19 years ago...she's doing wonderful, and she is one of the funniest women I know. She was BRCA+ and is from Long Island originally. She is one of the people in my life who makes me laugh (a lot) whenever I talk to her. Her name is Ruth and thank goodness I met her before her diagnosis because I learned so much from her, and didn't know I would be coping with the same diagnosis.

Part of the problem of not knowing people with breast cancer is that cancer was not discussed so freely in the past. Growing up, I can tell you I heard about people who had cancer in whispered tones, as was the fact that one my uncles "had sugar." I'm glad society has progressed enough to talk about things more openly. Another friend's mother had cancer for 22+ years, but there really was no breast cancer in my family, so that's as close as I knew people with the disease.

Debbie from N.C. you did not upset me at all. I want to have open, honest discussions about things and not have everthing sugar-coated. Recurrence happens.

Herceptin, and so many other targetted therapies, were not around years ago, and there are always things in the pipeline.

I love you guys! Vi

[Becky]

Debbie is right on this one as I saw a presentation on this in that 4.4% of high ER+/PR+ women will relapse after year 7. I don't know the dates on Jackie's articles in her posts but... this was one of the things the trial that tested 5 years of Tamoxifen followed by 5 years of Femara was trying (and did) prove.

More aggressive and fast growing cancers recur early and less aggressive and slow growing cancers can recur later. One of my onc's older partners said the latest recurrence (proven because the women's tumor block was still in storage at the Univ of Chicago) was 27 yrs. It recurred in her lung and she never had had any other treatment besides masectomy (because it was so long ago that there was no chemo or tamoxifen). He put her on Tamoxifen and she had a complete remission and died of something else.

As for the Stage 4 part in my earlier post - it was from the ACS (cancer.org) website when I was first diagnosed. Stage 4 at diagnosis and never had treatment of any kind (45% have disease free survival at 5 yrs). That data is now at least 9 yrs old and its probably better and I bet many of those women were Her2 because they would have received Herceptin.

The other of Jackie's articles state 30% recurrence rates but lump local and distant together and have no time constraints (early or late).

Trust me, not everyone recurs and less do than don't. Period

[Jackie07]

'Love keeps us together...'

[tricia keegan]

Pinkgirl,thanks for bringing this subject up as I also am interested in this dicussion. My dear friend is a lady who was dx at 37 with a two yr old child. She had 22 pos lymph nodes and a poor prognosis back in 1987 I think.
Her daughter has just graduated at age 22, she has never had a recurrance. I don't know if she's her2+ and she does'nt know herself as testing was'nt done at that time.
She thinks she's triple neg , but not sure, BUT,what an inspiration she is to me! She is living proof people can actually survive a poor prognostic outcome and live without a recurrance whether her2 or not.
Her friend has gone almost as long, this gives me hope untold...what do you think??

[KellyA]

Hi everyone!

I agree with Becky. I think that most people DO NOT reoccur if they are treated aggressively, and use every available tool they can. I don't know if I will fall in with those that do or don't. I cannot tell you how many people approached me and shared wonderful stories of people they know and family members that survived breast cancer and lived to be 70, 80, or more.

I have to admit that I worry often (even though I try not to) about a reccurence, and even wonder if I will see my children grow up. But as sad and sometimes depressed as I may get on a down day, I would not be able to go through life with a positive attitude or with hope for myself, my children or even in general if I had already made up my mind that I would reoccur.

I choose to believe (and hope) that I won't. I will deal with the negative later only if I have to.

Love, Kelly

[Bill]

Hello, Ladies! I've got an aunt, dx'ed with BC in the early 70's. We correspond almost everyday. A good family friend in AZ, the same thing. Cancer does NOT always reoccur. There are a few things to consider here. One major mind-set that we need to overcome- "what has happened in the past does not control what will happen in the future". Like VI and others have said, there is always something new in the works. Please think back to that first moment when you first heard about Herceptin and the fast-track FDA approval. For most of us, it was out-of-the-blue on the news, right? Right now, everybody take a few deep breaths, close your eyes, and try to picture what will be on the news on October 14th. We can't. (well, I can, but you can't, anyhow...) There are so many advances in science and medical technologies coming our way at an ever-increasing rate. While we sleep comfortably in our beds tonight, there are countless people studying and working on our behalf. A statistic is written in stone. Kick that stone aside, and by whatever means necessary, write your own future.

[Unregistered]

It is definitely true that most women diagnosed with early breast cancer do not ever recur. For example, my Mom was diagnosed almost 18 years ago, and is fine.

On the other hand, women with stage 4 breast cancer, such as myself, by definition already have metastases. While I very much wish that Becky were correct that only 50% of women with stage 4 breast cancer recur, that simply is not true. (Maybe she means stage 3??) Almost all women with stage 4 disease eventually recur. That is why it is considered to be treatable not curable.

When the NY Times described Elizabeth Edwards' mets diagnosis it stated,
"According to statistics from the American Cancer Society, only 26.1 percent of patients with Stage 4 breast cancer live five years or more, but those figures are by nature outdated and do not reflect recent medical advances." (Keep in mind that these stats are for survival at 5 years and not for recurrance over a lifetime.) I hope and believe that the stats are better now, but, unfortunately, they are not close to 50% survival for metastatic breast cancer. I don't mean to be negative. I just want to correct the misinformation that was posted.

[madubois63]

Don't get me wrong...I plan on being a very old lady with lots of grand kids! No matter that I was originally diagnosed stage IV, reoccurred 3 times with bc, got leukemia from chemo, had liver failure and then extreme iron overload (there's more, but that's just minor stuff). I live day to day for each new treatment that will get me to next mishap...I do not believe in statistics! I write my own statistics and story...

[Mary Jo]

Hi everyone,

I can't believe I missed this thread. When I read the remark made about a recurrence happening to all of us at some point, it left me a little unsettled I must admit. I waited for someone to add their comments to this but none came. I'm happy you brought it up for discussion pinkgirl.

I liked reading everyone's comments and like many of you have stated I choose to live my life in the now. Taking the best care of myself that I can and enjoying each breath God gives me.


Whether I ever have a recurrence or not isn't something I can think about often as it would suck the life right out of me. What will happen will happen and I will cross that bridge when I get to it.

Very interesting discussion and thank you pinkgirl for addressing it for all of us.

Holding all my "sisters" and "brothers" close in prayer and asking for God's Peace to surround each of us as we travel onward..............

Mary Jo

[Bill]

Exactly, Madame Dubois! Statistics are accumulated and analyzed data from the past. By definition, it is impossible to analyze and interpret data from the future, because it hasn't happened. All of our knowledge, as a species, is ever-increasing, and we all have so much control over our own lives, to make beneficial changes through diet, exercise, prayer, positive thinking, etc., that we should be encouraged by the future.

[Becky]

Hi Unregistered

Your figures may be true for Stage 4 women who became Stage 4 - like your example of Elizabeth Edwards - she was not diagnosed Stage 4 but at Stage 3. She was treated with surgery, chemo and radiation and then recurred. These women will not be cured but may be NED for years without recurrence (and, as you said - they may never recur).

However, women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients.

[Gerri]

My mother-in-law was dx'd over 15 years ago. Her tumor was 2cm. She had a masectomy and radiation, no chemo or anti-hormonals. She is cancer free to this day.

A very good friend was dx'd in 2003, probably stage 3C. She had several tumors, the largest was 7cm, vascular invasion and positive nodes. She had a bi-lateral mastectomy, chemo, and radiation. She has been on Femara the entire time. Her onc gave her 6 months to live - it will be 5 years this September. She has not had a recurrence.

I wouldn't say that I am worried about recurrence, but I am enough of a realist to know it is a possibility. Having said that I also believe that the treatment we are recieving now will prove to change those statistics for the better. WE are the new stats that will give hope to others in the years to come.

[sassy]

One reason I no longer visit other sites is that discussions often become attacks, which serves no purpose. Here we have discussions that benefit us all.

I'm not a "stick my head in the sand person" at all. I have the possibility to recurr, just as we all do. But I do not believe recurrance is inevitable. Even in my small community, there are several ladies who were dx'd over 20 years ago and have not recurred. Many told me of their disease after my dx. I did not know they had had BC because it was prior to my move here 27 years ago.

One thing to remember is that the statistics quoted for 10,15,20 years survival are based on data that is for initial treatment 10,15,20 years ago. Not based on current treatment.

For those of us who were dx'd early stage, Herceptin has changed the stats significantly favorably. And if I'm not mistaken, the longest term stats available could only be for about seven years (since the initialization of the HERA trial). We are in a category that does not have historical statistical data.

Do any of us look at traffic death statistics and refuse to travel in a car? Probably not. But hopefully we look at the contributing factors to traffic deaths and take steps to increase our odds of survival, ie wearing seatbelts, not talking on cell phones when driving, etc. We should look at recurrance stats the same way and take those steps that we can to increase our odds of survival, ie treatments, lifestyle, diet.

Cancer is a part of our lives--otherwise we wouldn't be here. But it should ONLY be a part--not the whole.

Enjoy life.

[hutchibk]

All I know is that stage IV doesn't worry me... as I am convinced that I have more than 9 lives and there are at least 50 stages. That's what gets me through the day!

[Jean]

Becky - thank you for clearing up the issue of stage 4
PERIOD.....LOL

First of all as many before have mentioned the most important issue we must all remember is that "TODAY" my sisters....it starts now, today...those who are /were/dx. early stage and treated/either with chemo/or/with chemo and/herceptin will change the stats....it is already happening. Think about this,
how could the stats stay the same? Herceptin and many of the new chemo drugs are already working, we see that on this site everyday...

To say that this nasty disease "ALWAYS" comes back...is just not true/nor/logical. There are many women who have not recurred, and just maybe you have not met the ones that have not. I have a friend whose Aunt died of "old age" had bc when she was in her 30's....had a mastectomy (which was the only medical approach back then) This friend's Aunt passed when she was in her 80's and as I said not of bc./or any other cancer.

While many women will recur /there are many who will not recur. I believe that with early detection (thanks to
newer methods ) new treatment choices, great attention to diet, and keeping our immune system as strong as possible, and very important - continue to be dilagent with your health care, have your check ups ....(some become complacent as the years pass) we are seeing the tide change. Yes, there is no cure for cancer - TODAY....but as Bill states....who knows what we will be hearing in October...The future is ours.

I love all of you - and we must continue to fight and stay
strong.

Jean

[goops]

All I know is that stage IV doesn't worry me... as I am convinced that I have more than 9 lives and there are at least 50 stages. That's what gets me through the day!
__________________

I guess there are two of us here like that. I don't believe in the word incurable, I had a cat whose cancer was "incurable" - he got down to just a few pounds and the vet felt he would die within hours, instead he got up started eating and within a couple of days was playing and a couple of weeks later the vet could no longer find any signs of cancer. My cat Phillip taught me that there is no such thing as incurable.

[Kathy S in Tokyo]

Hey, I've exceeded the median range (12 to 24 months) now going into my 4th year of stage IV active disease and fighting (Kathy pops a party cracker :-) ). I have a few friends who are long time (more than 20 years) stage IV survivors and who love to laugh. I figure it can't hurt to be happy and laugh whatever the numbers say. I'm so glad that I was never very good at math.

I agree with PinkGirl about Maryann's upbeat postings and remain thankful that new drugs are coming out all the time and information is available here to help me make lifestyle choices to improve my odds.

[PinkGirl]

I think one of the things that has affected my thinking on this is that when I hear the nice high numbers of survival, they always say ..... this many people are living beyond 5 years.

I can't really get excited about 5 years. I'm already at 3 years.
I know that I am not a stat but why do they keep talking about
5 years?

As far as me not knowing any long term survivors, I guess that
spray cheese is not the only thing missing in my little town :)

[Hopeful]

Geez, take a day off from the internet, miss all the excitement.

For Debbie L, here is the link to the thread with my post in it that discussed chemotherapy's relationship to late recurrences: http://her2support.org/vbulletin/showthread.php?t=34237&referrerid=1173

Here are some quotes from a recent CME from Clincal Care Options for oncology, derived from information presented at the most recent (2007) San Antonio Breast Cancer Symposium:

Matthew Ellis, MD, PhD:
I will also add that good prognosis needs to be defined—and not just by a 5‑year event rate. In reality, a 15‑year event rate is needed, even for hormone receptor–negative disease. While it is true that late events continue to occur mostly in the ER‑positive population, patients who are ER‑negative still experience late relapses. Therefore, we need to be very conservative. . . . It is important to point out where the gray areas still lie. Even in the group of patients with low recurrence risk currently defined at 10 years, there could be events in that group at 15 or 20 years because they have slower growing tumors. Therefore, the idea that the RS (recurrence score measured by Oncotype Dx) could be used to determine length of endocrine therapy is not yet valid. However, chemotherapy benefits occur in the first 5 years, after which time, the curves become parallel. Therefore, chemotherapy exerts its effect on relapse early on because it induces tumor cell apoptosis. In contrast the effect of adjuvant endocrine therapy increases with time. In general, I believe that developing these genetic signatures as a tool to define chemotherapy decision making is promising, but they are not yet suited for making decisions about endocrine therapy, such as duration or choice between agents.


FWIW, I believe a lot of late relapses are not recorded simply because they are so late - maybe the patient has moved, the original doc has retired, whatever the case may be. There just has not been long term follow-up (and I mean 20+) to be able to give stats on the matter. The closest thing I have seen is the meta analysis performed by the Early Breast Cancer Trialists Collaborative Group, which meets every five years to review their data. In their most recent meeting in 2005, the phenomenon of late recurrence for ER+ patients vs ER- was discussed, and it was noted that at 10 years, the lines crossed, with ER- having fewer relapses and ER+ more. I think the greater focus of research has been on the more aggresive, early recurring bc, which is predominantly ER-, and the fact that ER+'s recur so late has taken attention away from the fact that we need additional research in this area. Remarks like those from Dr. Ellis above are encouraging to me, in that it appears there will be more research into this issue, and, hopefully, more options for treatment.

Hopeful

[Barbara2]

In April 2007, I asked this question of Dr. Pegram, a well known Dr. who specializes in breast cancer: Do most Her2+ breast cancer patients have a recurrence?

Answer: No. Most don’t. Now days, for early stage breast cancer, stage I or stage II, since Herceptin, most of those patients are not recurring.

The next time I see my onc, I plan to ask him about recurrance: Do all breast cancers eventually recur? I usually avoid these kinds of questions because they make me nervous, but I have to believe he will know of many patients, who are many years out (20 years and more) that have not recurred.

[dlaxague]

However, women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients.

Hi Becky,

Thanks for the great answer to the Estrace-chemistry question (although we still don't know if there's danger in any or all of those chemicals, right?)

I have never heard your statement above. Which doesn't mean that it's not true. But to differentiate between distant mets depending upon whether they are found as initial diagnosis or after primary doesn't make sense to me.

For one example, people recur who didn't have chemo - do they count the same as initial stage IV's? I've never heard the concept of chemo naivety making a difference to prognosis after mets diagnosis. It's more about what/whether the cancer responds, isn't it? It's true that each additional treatment tends to get a shorter and shorter response, but some get years from each treatment while others run quickly thru the options with little response. Still others try treatment after treatment without response and then hit on one that takes them to NED for long periods of time. There does not seem (right now, because we don't understand enough) a lot of logic to the behavior of cancer.

I agree with almost everyone else on this topic. Stats don't tell us anything about our own self. They are useful only for helping to make treatment decisions and after using them in that way the best thing would be to forget them and move on (easier said than done). It's hard to accept the uncertainty that there is no way to know what will happen to any one individual but that's the truth.

The only part of this thread that I adamantly do not agree with is those who are saying that cancer always comes back. You cannot look at a few of your acquaintance and draw conclusions. Look at the many available studies that include thousands and thousands of women and see that many are cured. The rub, of course, is that no one person can know (until they die of something else) if they are in that cured group.

As for prognosis after stage IV diagnosis - treatment is advancing SO quickly there that I don't think useful stats exist right now for these women. Because they are living so much longer (as a group), it will take longer to accrue the stats that apply to them. It's good news, right? Sky's the limit!

Debbie Laxague

[AlaskaAngel]

Because we are HER2 and that is where so much of the research has been focused, I am optimistic that things are and will continue to improve for those of us who are here now.

However, I think it is still a different story for triple negatives especially, but also for other forms of bc.

I have to raise a question about numbers:

From DebbieL:

For one example, people recur who didn't have chemo - do they count the same as initial stage IV's? I've never heard the concept of chemo naivety making a difference to prognosis after mets diagnosis. It's more about what/whether the cancer responds, isn't it?

My question and response:

"It depends". Are we only talking ONLY about recurrence, or are we talking about the likelihood of dying sooner due to having cancer? For one thing, there is an unknown percentage of additional women who die sooner of "other diseases" brought on by cancer treatment -- especially due to things like heart disease with drugs like Adriamycin. There is also an unknown percentage who die from other effects brought on by treatment that are not even as yet acknowledged to have been related to or caused by the treatment for cancer. Those numbers would also, of course, be different for those who are treatment-naïve.

We also do not know which of the treatments that turn out to be ineffective actually may potentiate recurrence; i.e., they may not only not be effective, but also contribute to the recurrence.

Does anyone have the numbers for the people who fall into those categories?

A.A.

[Donna]

Just to add my 2 cents - we are celebrating my Mom's 78th birthday in 5 days - she had bc and a mastectomy - no rads or chemo - and then a recurrence 5 1/2 years later - had chemo and rads and that was over 16 years ago.

I am with Becky and Ma Bubois and my Mom!

Love this thread, good discussion!

Donna

[Unregistered]

Not to beat a dead horse, but the stats (albeit a bit dated) on stage 4 at diagnosis are the ones that the NY Times article that I quoted for Elizabeth Edwards. These are for women originally diagnosed at stage 4. The ACS later had to issue an apology to the Edwards campaign, noting that it does not have statistics on women who later go on to have metastases. If I did it right, below should be a link to a PDF from the ACS with these stats. (Look at figure 8 for women with distant disease at diagnosis.)

http://www.cancer.org/downloads/STT/BCFF-Final.pdf

I would love to be proven wrong on this, since I have been searching for more favorable statistics on long term survival for stage four disease, but I have not found anything particularly encouraging. (If you have an article or study with better figures for someone orginally diagnosed at stage 4, please post it.) That said, I am currently NED, and I know that some women with stage 4 disease do quite well on Herceptin for a long term. Everyone is different, and responds differently to chemotherapy and Herceptin. So, I am merely posting this to back up my original position, not to discourage anyone. I personally, intend to be someone who beats the odds.

[Terri B]

Great discussion!!!

IMHO, Sassy said it best when she said:

One thing to remember is that the statistics quoted for 10,15,20 years survival are based on data that is for initial treatment 10,15,20 years ago. Not based on current treatment.

touche!

[chrisy]

Goops, Brenda, I am with you, too!

And PinkGirl - has it occurred to you that there are bc survivors passing you on the sidewalk every day and you just don't know it. Because they have just gone on to live out their (long) lives. Do you walk down the street shouting out "I'm a cancer survivor"! Probably not (at least not ALL the time), so what makes you think there are not others out there too?

I went to a Jimmy Buffett concert once and saw a fellow "peer navigator" there. She was a long time BC survivor - but to me and everyone else, she looked just like any other parrothead. As, by the way, did I. That was shortly before I DID have a recurrence, but since then I have gone to 4 or 5 more Jimmy Buffett concerts and don't plan to stop any time soon.

just another parrothead. They do have those in Canada, don't they?

[caya]

and I missed alot of threads. I think that with Herceptin, certainly most early stagers will not recur. I know my onc. gave me a "well over 90% cure rate", and he would not use those words lightly. It's a whole brave new Herceptin world out there, Taxol/Taxotere world out there - and those stats won't be available for years to come - and I intend to be in the over 20+ years survivor group.

I have a friend who was diagnosed at stage 3, 12 positive nodes - 10 years ago at age 43 - no recurrence. I have another friend diagnosed at age 37 - stage 3 - ( now 11 years out) - no recurrence.

And it's a crapshoot - let's just keep on plugging for the cure.

Oh, and Chrisy - yes, we do have parrotheads in Canada.

all the best
caya

[PinkGirl]

Chrisy, Chrisy, Chrisy,

And PinkGirl - has it occurred to you that there are bc survivors passing you on the sidewalk every day and you just don't know it.

So now you are assuming that we have sidewalks in Canada???? I had to google parrotheads. I've always liked Jimmy Buffet but had never heard of a parrothead. Now I know.

Just between you and me, I'll tell you what my problem is with the discussion in this thread. I admit that I have always thought that breast cancer isn't a good thing to get because lots of women die from it. Don't know where I got that idea but that's what I've always thought. Now, the optomists in our group are trying to set me straight. So now I'm wondering why we are always crossing our fingers, sending good vibes and praying for each other.
Why are we all basket cases when we're having scans? I took out my garage door while waiting for MRI results. If all of us here have had surgery, chemo, radiation, on tamox. or an AI, then we probably won't recur, right? But we keep on being scared and we post about mind/body stuff and how to meditate and relax and handle our stress from this disease. Has that all been for nothing??? According to what I've read on this thread, the majority of us are not going to recur; we're going to live to be little old ladies and die from something else. I am confused.

[Mary Jo]

Pink....Nothing to add just wanted to say I loved your post. How true it was. No matter how optimistic any of us are the fear of this disease is always lurking....how right you are!

As I read your post I smiled all the way to the end.

I guess we'll all continue to "send good vibes" ~ "cross our toes" and "pray" or whatever trips our triggers.

MJ

[madubois63]

Oh Pinkie and everyone - If We had the answers, we all wouldn't be here at this great site discussing this. There is no right or wrong answer for this one. Every cancer is different as is every person. Why did my friend named Maryann, similar in age (she was 3 years younger), young kids and Greek like me get diagnosed around the same time as me with stage II bc (don't remember all the details) and even though I was stage IV with all the rare stuff, she is the one that passed on and I am still here fighting each new thing that is thrown at me and responding to every treatment they give me???? Maryann did not respond to any thing. She did the miracle Herceptin and all the other chemo's. She got the Tykerb but I think it was too late by then. I am single and have no one besides my elderly mom as my caregiver (my kids are great too, but...). I handle all my own medical care and decisions, the finances, insurance, financial aid for college, financial/co-pay assistance, grocery shopping, cooking and most of the laundry and cleaning. Maryann had a very tentative husband that handled her medical decisions and did everything when she was in treatment. I think I had way more stress on my back, having no one to really share the load with. I had to be aware every second of the day. An on call doctor tried to change a medication in the middle of the night on me and that would have interfered with another long term medication. I was on morphine enjoying the high and pain free existence but still had to get my wits about me and fight the doctor. I yelled at him and made him get my regular doctor on the phone so this guy could look like the a$$ that he was. My point being...???? I am not a statistic!! We are living longer because we are becoming smarter than some of the doctors!! I am proof of that. In the past, no one lived with stage IV Inflammatory bc almost 9 years out especially after occurrence, Acute myeloid Leukemia, a bone marrow transplant (that 10 years ago they would have thought me too old to handle and not done it), severe Graft vs Host disease of the liver (one woman that happened to be one of my clients from the law firm had her transplant at the same time as me. She passed on from GVHD of the skin). And now I have iron over load in my liver that WILL set off alarms at the airport/court house. You have to put your faith in your doctor, medical decisions and yourself. Don't second guess what you have chosen to do. Take the best care of your body as you can and LAUGH as much as possible. Cancer hates the sound of laughter. It means you are living with cancer not becoming your cancer.....

[harrie]

That was very encouraging to read Vi Schorpp's post about her friend that had BC 19 yrs ago and was BRCA postive. (since I am also BRCA+)

Also, it was also very encouraging reading Barbara's question to Dr. Pegram.

I think what makes it tricky to predict outcomes are all the variations out there in the biology of cancer tumors. the good part is that we are able to identify that much more then we were able to in the past. That must push up a higher percentage of people into the safe zone.

Maryanne

[cafe1084]

I met a woman during my treatments, stage 4 breast ca bone and brain mets and has been on and off treatment for the last 12 years. She works everyday, loves her family, cooks Sunday meals, and takes vacations with friends....to me, that is a testament to the idea of living your life in the present, not looking to the future at your own death.We all will die. That is guaranteed. Yes, we may all at some point recur, or we may not, but you know, I can live with that. I don't need statistics to tell me I have an 20% chance of recurrence in the next 3 years or a 23.5% chance of metastasis in 2 years. The only statistic I need is that I am here right now and I have been given this time, so I will cross a recurrence bridge if and when I get to it. The only thing I can't live with is the fear and doom of cancer hovering over my head...

Cheers to us and today!

[dlaxague]

AA says: "It depends". Are we only talking ONLY about recurrence, or are we talking about the likelihood of dying sooner due to having cancer? For one thing, there is an unknown percentage of additional women who die sooner of "other diseases" brought on by cancer treatment <snip>
...do not know which of the treatments that turn out to be ineffective actually may potentiate recurrence; i.e., they may not only not be effective, but also contribute to the recurrence.
Does anyone have the numbers for the people who fall into those categories?

I think that the answer is "no", not really. There are some stats but because of what they are looking at (very long term effects), they are even more outdated (for those being treated today) than the survival-from-cancer ones are. But the number is small. Smaller than the one for breast cancer death and recurrence, certainly.

My take on this at diagnosis was that I'd rather do what I could to survive the cancer (more a short-term goal) and deal with what I had to do (perhaps) to survive the effects of treatment if/when that became an issue (long term). Die now or risk dying later - I chose later, with no qualms. At diagnosis, I figured that if I lived to deal with the possibly life-threatening aftereffects of treatment, I'd be most fortunate.

As for treatments that potentiate recurrence - we'd have seen that, wouldn't we? Yes there are treatments that are ineffective but the rub is that they are only ineffective for some while working wonderfully for others and we do not yet know how to tell ahead of time who is who. Progress is being made in this regard (individualized treatment) but it is slow, because the questions are incredibly complex.

Debbie Laxague

[dlaxague]

Pinkgirl said: I've always thought. Now, the optomists in our group are trying to set me straight. So now I'm wondering why we are always crossing our fingers, sending good vibes and praying for each other.
Why are we all basket cases when we're having scans? I took out my garage door while waiting for MRI results. If all of us here have had surgery, chemo, radiation, on tamox. or an AI, then we probably won't recur, right? But we keep on being scared and we post about mind/body stuff and how to meditate and relax and handle our stress from this disease. Has that all been for nothing??? According to what I've read on this thread, the majority of us are not going to recur; we're going to live to be little old ladies and die from something else. I am confused.

Well, for some of us, the odds are or were less rosy than "probably won't recur", regardless of intensity of treatment. In this discussion we are talking global figures but some had worse details than others at primary diagnosis and others are still trying to find effective treatments for stage IV.

I think that after primary diagnosis the level of fear-of-recurrence, though, is probably more related to each individual's perception of the threat than it is to actual threat. Some who statistically have a 96% chance of survival may leave bc in the dust and move on - certain that they are cured. Others may experience lingering concerns. 'Same could be said of the other way 'round. (96% chance of recurrence). Again, the statistics tell what happens to large groups of women but have nothing to say about what will happen to any one individual. There are no guarantees.

I think what all our discussions about anxiety and fear are really about is accepting uncertainty. But everyone's life is uncertain. No one's life (even the sweetest, healthiest newborn's) is certain. We've just experienced a higher-level alert than most, in this regard. We can use that alert to explore and grow. I see that as an opportunity for which I am grateful. Cancer is just one of so many things that can afflict people. I do not see it as a "terrible disease". I do not hate it. Everyone has burdens. This one just happens to be one of ours.

For myself, I'm no longer scared. I mostly let go of scared about a year after diagnosis. This is not to say that I believe that I will never recur and die. I know and acknowledge that possibility. Sometimes, in fact, I "use" that possibility to remind myself to focus on what's important.

Whoa. Rambling alert.

Debbie Laxague

[chrisy]

OK guys, now I'm having a 'quote impairment' insecurity. How have you all been doing the quote thing?

dlaxague said: I think what all our discussions about anxiety and fear are really about is accepting uncertainty. But everyone's life is uncertain. No one's life (even the sweetest, healthiest newborn's) is certain. We've just experienced a higher-level alert than most, in this regard.

PinkGirl, this is a great discussion - thanks for starting this thread. I love this place. I wish I had wisdom to add.

True, breast cancer is not a good thing to get and many women do die from it. But not everyone, especially as more is learned about this disease, early diagnosis, prevention and intervention.

Statistically, many (most) women do not recur, and those diagnosed at earlier stage have more favorable odds than those diagnosed at a later stage. True, these are all just statistics and WE are all individuals. For each individual either you WILL or WON'T get cancer.

I include myself in the "optimists" side because even though I am everyones worst nightmare, I still try to stay optimistic even for myself.

But what I think we're seeing most on this thread is statistically backed optimism! It's not optimism that most women do not recur and die from breast cancer - it's reality. Choosing to believe that you as an individual will be on the "right" side of the statistics is optimism, but that doesn't mean it's not valid.

I think once we've received a diagnosis of breast cancer, the threat becomes real, we suddenly become the "someone else" who gets cancer. And we will or will not recur and will or will not die from cancer. Where we could comfortably ignore the C word before, we now have to face it, and our fears about it.

Most people get to blissfully ignore their mortality, we "get" to face it head on.

Remember, as wonderful a place as our HER2support forum is, it is not a representative sample of breast cancer survivors. We are mostly people who are actively in the fight...either as newly diagnosed or "lifers" who are living in stage 4 of 50. So most everyone here is getting scans, treatment, etc. all the time! It's a pretty intense environment. But we are not statistically representative of the world of people who get breast cancer - even Her2 bc.

I really value the survivors who stay around to continue offering their wonderful support. But most people eventually put their cancer experience behind them, including the need for support groups such as ours.

PinkGirl, I hope you'll stay forever because you bring so much honesty and humor to this forum. Also because you clearly still have much to learn about the world and we can help you. But you will not always be in treatment, having tests, facing your fears with as much intensity. You will (statistically speaking!) be one of the millions of bc survivors who get to look at their cancer experience only in the rearview mirror.

oops....is there another ramble alert needed?

[PinkGirl]

Geez Chrisy, now I have to quote you again. You said, to me, Also because you clearly still have much to learn about the world and we can help you.

Are you saying that I'm not worldly???? Just because of the spray cheese, parrotheads and MTV????

[AlaskaAngel]

The big picture of the of HER2 bc in terms of numbers is the same no matter what our diagnosis is, but it looks different to each one of us depending on where each one of us is standing. For the most part, those who are diagnosed as Stage I are standing closer to the part of the picture that is less threatening, and those who are diagnosed as Stage IV are standing closer to the part of the whole picture that is more threatening. Our perspectives are often different.

We do know that at least in the USA, around 90% of those diagnosed now are diagnosed as early stage. So most of those with bc are looking mostly at the less-threatening part of the big picture. And that "part" of the big picture is accurate for 90% of those diagnosed with bc.

Most of those diagnosed with bc (90%) nowadays are likely not to benefit from treatment whatsoever (other than perhaps the psychological benefit of believing it gives them some protection), and are more likely to suffer adverse effects from treatment, including death from "other causes" that are often not counted as "cancer" deaths yet would not have happened had they not had treatment.

However, of that 90%, those with early stage HER2+ bc are in a more puzzling situation. Some are at high risk even when diagnosed as Stage 0 and some at low risk even when diagnosed as Stage 1, so there is an uncertain degree of reason for early stage HER2 positives to "play it safe" and do treatment.

As a stage I, I am somewhat more likely to see cancer and recurrence as less threatening because that is more accurate for someone diagnosed as Stage I -- even in regard to HER2 positives -- whereas DLaxague was diagnosed at a higher stage and accurately sees cancer as more threatening and sees treatment as more effective and more essential. For different reasons we each did not have Herceptin, yet we both are still NED more than 5 years out. Because I fit into the 90% who stand to benefit least from treatment, I see treatment as being somewhat more of a threat than a benefit. I think 90% is a very meaningful number.

AA says: "It depends". Are we only talking ONLY about recurrence, or are we talking about the likelihood of dying sooner due to having cancer? For one thing, there is an unknown percentage of additional women who die sooner of "other diseases" brought on by cancer treatment <snip>
...do not know which of the treatments that turn out to be ineffective actually may potentiate recurrence; i.e., they may not only not be effective, but also contribute to the recurrence.
Does anyone have the numbers for the people who fall into those categories?

DLaxague says: I think that the answer is "no", not really. and As for treatments that potentiate recurrence - we'd have seen that, wouldn't we?

ME: No, we cannot assume that to be true.


-AlaskaAngel

[Patb]

OK I have read every post, tons of books and articles,
etc. (most everything about bc). I want to believe that
its all over but I still insist on tests to check? Go figure.
Today I opened a Vanity Fair Magazine and the Breast
Cancer Research Foundation had a quote and it said in
the US a woman will die from breast cancer, on average, every 13 minutes. Wow thats just way too many and I hope that figure is changing with all the
new drugs. I am taking Qigong and they say all that
matters is the now so for now we are all ok. I also
read Eckhart Tolle, The Power of Now which was
hard to read but enlightning in many ways. Take
care everyone and have a great weekend.
patb

[webmum]

Debbie says: I think what all our discussions about anxiety and fear are really about is accepting uncertainty. But everyone's life is uncertain. No one's life (even the sweetest, healthiest newborn's) is certain. We've just experienced a higher-level alert than most, in this regard. We can use that alert to explore and grow. I see that as an opportunity for which I am grateful. Cancer is just one of so many things that can afflict people. I do not see it as a "terrible disease". I do not hate it. Everyone has burdens. This one just happens to be one of ours.

For myself, I'm no longer scared. I mostly let go of scared about a year after diagnosis. This is not to say that I believe that I will never recur and die. I know and acknowledge that possibility. Sometimes, in fact, I "use" that possibility to remind myself to focus on what's important.


wow Debbie, thank you so much for writing this, I've just finished rads after almost a year of treatments/ surgery etc etc, and I'm still in that scary place where you can't quite allow yourself to live your life again because you're so scared it's going to hit you again..........in the meantime you waste precious time of your life....

where you are now is where I hope to be some time in the future, won't be a year from diagnosis as that is only a month away....but hopefully, not long after that.....so again, thank you for expressing it so well, for showing me there is a way out which doesn't entail any "thinking positive" - how I hate that phrase - nor feeling paralyzed by fear of recurrence.



(I have been visiting this forum from almost soon after my diagnosis, rarely post as I nver feel I have much to contribute that hasn't already been said by someone else, but I thank you all ladies as you are an incredible source of information, and reading your stories has helped me get through this really long and difficult journey!)

Chiara

[AlaskaAngel]

http://www.medicalnewstoday.com/articles/116735.php

[DanaRT]

I have a great-aunt who underwent double masectomy in 1982, she is alive and ornery in a nursing home at 94! I also know of a woman who had two different breast cancers ten years apart. She's also doing very well and in her late 70's. Let's keep the faith.

Sadly, one of my chemo friends lost her life on Thursday, she was Her2 postive. She was 72 and survived many happy years following diagnosis. She was a wealth of information and very supportive during my chemo treatments. I shall miss her.

Dana

[BonnieR]

Dana, those are beautiful girls!

[tricia keegan]

Pink girl, love the discussion here and can identify with your thoughts and am every bit as confused as you.
I've just celebrated my third year out and was feeling good in believing totally herceptin had changed the stats for me and I was one of the lucky one's.
I say this because two of my friends dx with me have had recurrance's, one to the liver and passed very quickly and one who is still in horrendous tx having had a huge tumour growing on her spine the whole time she did chemo with me!!
I was feeling confident, this evening I sit here with a pain in my knee, it's been there over a week and if still there next week will have the attention of my onc but...suddenly I have that dull scared feeling in the pit of my stomach and wonder if this it???
God do we ever get over this fear??
I doubt it and imagine I'll never have a pain that is just a pain anymore but mets somewhere in my mind. I think cancer does'nt just affect the body but no matter how positive the personality it always has a profound effect on the mind too.
Thanks again for bringing it up!

[BonnieR]

Today I just began reading a book called "After Breast Cancer" by Musa Mayer. It was sent to me by the people who make Herceptin. When I began treatment there was someplace you could sign up for info from them and I have periodically received little encouraging pamphlets, etc. Now that I have completed the year of treatment, this book came. The timing is perfect. It looks to address so many of the concerns and fears we all share.

[Becky]

I wanted to post another 2 cents. I did read (4 years ago when first starting my journey) that Stage 4 (5yr survival) stats were 45% (perhaps it was not disease free survival but when looking on cancer.org, the 5 yr disease free survival for those diagnosed (chemo naive) at Stage 4 is 26%. Just wanted to say that as "Unregistered's" statistics were right. None the less, think about how GOOD that is (and those stats are from at least 5 years ago).

Had lunch with MJo and Joan M today near New Hope, PA. It was very nice to meet 2 more from the board. Very soon we are going to post to have a lunch in NYC so stay tuned for a "sign up" in the next couple of weeks.

[harrie]

The way I try to look at the present and the future is like this: For today, if I am NED right now, and there is nothing significant that I need to be concerned with, I really want to appreciate THIS day. Who the heck knows what tomorrow may bring. It may bring yrs and yrs of days like today, it may bring situations like before where I will be needing to contemplate options and whatevers.....So no sense in jumping the gun and spoiling the carefree days right here and now. I will deal with the future when the future becomes present.

Dont get me wrong...many times I do slip and worry about what may happen,....I just try not to for the above reasons.

[swimangel72]

Thank you all for this interesting discussion - I do not worry about recurrence but I do worry about a new, different cancer showing up in my body - and I worry even more about a life-threatening disease showing up in my husband or kids. I feel strongly that if I do get a recurrence, I'll get through it. Sometimes though, I feel superstitious - when I look at the palm of my hand and realize how short my lifeline is compared to other people.......silly, of course, so I try to get negative thoughts like that out of my mind. Heck, for all I know, I could get hit by lightning tomorrow (considering all the thunderstorms and rain we've had in my region, it's not an impossibility!) So I'll continue to say my prayers for good health and happiness for my family and friends - and do my best to live life to the fullest!

[Bill]

Amen, Harrie. The Buddhists would call the essence of your post, "mindfulness". Living in the moment. If you dwell on the past and worry about the future, you cannot enjoy the only thing that you really have-the present. The past, you "had" that and now it's gone. The future, you may or may not "have" it, who knows. The only thing that you actually "have" is right here, and right now, and we should enjoy it to the fullest. Be mindful of every moment, and how we spend them.

[Sheila]

If what some say about the statistics of survival being stage IV, then I have alot of living to do in the next 2 months...because that will be my 5 year mark as stage IV.... and getting close to 7 years as a survivor....I focus on living, not on the what ifs....the way I see it, cancer has altered my life, and some of my plans, but it will NOT alter my spirit! Each day is a gift to ALL of us, healthy or not, and what we do with that gift is what truly counts and makes a difference....I'm a IV, I have always dreamed of being a 10!

[Bill]

You have always been a 10, Sheila.

[harrie]

Another thought.....

Every single person alive on his planet has "X" number of days left to live their life. It is a granted that in the days to come, some days will be great and some will be challenging. To spoil a good day with worries about something that may happen in the future that we have no control of at the present, is a thoughtful waste of a good day that already has so many blessings to be appreciative of right here and now. AND...these blessings may for some reason not be around in the future. BUT......remember too....the future will probably be holding some surprise blessings for us that we are totally clueless about right now!
Life has a way of working itself out really well if we just allow it to be.

[dlaxague]

Becky said: "women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients."

Becky, do you have some study or other information to give us to prove this statement? I've never heard that there's a difference between de novo stage IV diagnosis and a stage IV recurrence.

I do agree that no statistics available right now will apply to women being treated for mets right now - because things are changing too fast (for the better) for statistics to keep up. So the news is better than any study can show.

But again, I've never heard of this differentiation and if it's true, there would be many clues within it. Please tell us more.

Debbie Laxague

[TriciaK]

Somehow I missed this thread. I've just read it all, and all I can say is "WOW!!" No wonder I feel so much empathy and love for those on this website. You are all so incredible. I just have to add my 2 cents worth, since as most of you know I am a 23 year survivor of BC. I don't know how to do my personal history column at the end of each post, so will briefly repeat it here:
Diagnosed at age 56 in 1985 with early stage BC. Bilateral mastectomy + reconsturcton (silicone) No chemo
Mets to T-9 and T-10 vertebra in 1990 (within 5 years) No chemo, used diet change, psychonueroimmunology (hypnosis and meditation), plus 5 years of Tamoxifen. My last MRI in 1995 report stated "HEALED metastatic breast cancer)
I took that literally and "forgot" about BC for 15 years. Lived very active personal and professional life
Heart attack in 2004+ CT showed BC mets to lungs, now her2. In hospital 1 month due to heart attack and pnuemonia then treatment with herceptin and navelbine for 6 months. Herceptin alone for 9 more months. Heart affected (ef=30), triple bypass, 2006.
Moved 3 times; finally settled and stable in S. Utah, a wonderful area; last 3 PET's=NED (Latest PET in June 2008)
I am now 78 years old (will be 79 Dec. 9), looking forward to being 80 in Dec. 2009. I have severe fibromyalgia, so I have to ignore pain. I faithfully take diovan and coreg cr , which has greatly helped the cardiomyopathy and congestive heart failure. I also take femara and fuerosimide and the suplement Reliv. I eat mostly vegetarian, try to exercise some. My ef is now over 50. I live life to the fullest, am writing my life story, am very active in my church, enjoy my wonderful husband , 9 children, 32 grands and 32+ great grands. Life is good. I don't have extra energy to worry about BC, will probably die of a heart attack anyway, but life is still so much fun I plan to be around awhile, and no matter what, LIVE every day.
I don't know where I fit into the statistics, since my onc gave me less than a year when I started herceptin. I just laughed at him and said "Watch me!" I have cashed in my life insurance. That was fun.
I still think this website is one of the best things that has happened to me. I appreciate Joe and Christine so much, and I love and appreciate each one of you. As I read your posts I visualize each one of you and pray for you. I know how dibilitating fear is, but I remind myself that "fear and faith cannot co-exist" so I concentrate on faith.
Sorry this is so long, but I want to add one more thing, my latest favorite quote to live by. It's from the CancerCrusade:

When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid for you to stand on, or you will be taught how to fly. (Patrick Overton)

I believe that. And I love you all. Hugs, Tricia

[mts]

Tricia-

YOU are ONE savvy chic !

Maria

[Terri B]

Wow Tricia, who could read your story and not be COMPLETELY impressed!

You GO Girl!!!

[Mary Jo]

Just wanted to say I love you Tricia and think you are simply WONDERFUL. You offer such wisdom and love to this site and give all of us hope.

Thanking God for you "sister"

Mary Jo

[Sherryg683]

[quote]However, women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients.

Becky,
My oncolgist told me exactly the same thing. He said it was very possible that I had a complete response to my initial chemo and there was a possibility that I would not reoccur. Meaning that the chemo had gotten every stray cancer cell. He told me from the beginning that he expectecd that if I were going to reoccur that it would be in the first 7 to 9 months after chemo, that's when they see the majority of reoccurances in stage IV that had responded to chemo. It has been 2-1/2 years since my diagnosis and I have been NED since the first scan they took, which was 6 weeks into treatment. Now I am not saying that I will never reoccur, I am usually more of the glass half empty type of person and kind of expect bad news every time I get scanned but I have been pleasantly surprised. We have to have hope or we'd just as soon give up now. I still believe God has a few miracles that he hands out and if I could live another 20 years, I'd consider that a miracle. ..sherryg683

[harrie]

Oh my God Tricia!! I absolutely positively LOVED reading your story. It makes me want to totally jump for joy and just give you the biggest hug!! Your picture is absolutely beautiful also.

I also love that quote what you included on the bottom of your post. I am going to safe that one.
Well, I think i might want to save your whole post actually.
Lots of love to you,
Maryanne

[schoolteacher]

Tricia and all you other wonderful ladies,

Thank you for your stories. I have been feeling rather sad after finishing my radiation June 27, 2008. I started chemo back on July 31 to make sure there are no stray cancer cells floating around. The doctor told me the same thing that all of you have discussed. He said, "that about my cancer could have been eradicated with my neoadjunvate therapy." He just wants to make sure. I really needed to hear these stories this morning. Every time I come to this site I learn something new. I now know that in stage IV that the cancer usually reappears in 7 to 9 months. I have been NED since April 16, 2008. I did have my HER2 test last week and it was 9, and the doctor said, "that this was a good indicator."

Good Bless all on this site.

Amelia

Amelia

[DanaRT]

Tricia, Thank you for taking the time to share your story. Simply uplifting and remarkable. Love the quote by Patricia Overton.

This thread is making me feel so much better than I have felt in months...9 months. I plan to focus on the positive more and more. Maybe I will sleep through the night and not wake in a panic. Daytime is easy, nights are horrible.

BonnieR, Thank you for your kind compliment. It has been very rewarding raising the three of them. The oldest one on the right is an English teacher, middle one in 10th grade and the one on the left a hairdresser/stylist. They have turned in to people I plan to be around for a long long time.

Hugs,
Dana

[harrie]

Amelia, are you doing well with the recovery from your surgery?
Maryanne