The scary stuff!!!

[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/sho...eferrerid=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.

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!

[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!

[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.

[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

[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

[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.

[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!