The scary stuff!!! - Page 2

Jackie07 · 07-31-2008, 03:22 PM

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 · 07-31-2008, 05:25 PM

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 · 07-31-2008, 05:27 PM

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 · 07-31-2008, 05:51 PM

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 · 07-31-2008, 05:52 PM

'Love keeps us together...'

tricia keegan · 07-31-2008, 06:11 PM

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 · 07-31-2008, 06:22 PM

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 · 07-31-2008, 06:22 PM

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.

07-31-2008, 06:49 PM

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 · 07-31-2008, 07:17 PM

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 · 07-31-2008, 08:19 PM

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 · 07-31-2008, 08:20 PM

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 · 07-31-2008, 08:23 PM

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 · 07-31-2008, 08:36 PM

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 · 07-31-2008, 08:44 PM

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 · 07-31-2008, 09:40 PM

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 · 08-01-2008, 01:37 AM

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 · 08-01-2008, 04:31 AM

Quote:

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 · 08-01-2008, 05:53 AM

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 · 08-01-2008, 06:46 AM

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