How many Stage III gals never go to Stage IV?

jpsgirl96

The subtitle is "A Biography of Cancer"; the author is Siddhartha Mukherjee.  He is an oncologist; the book won the Pulitzer Prize last year.  I think the most "a-ha" thing for me was the realization that cancer is essentially an out of control version of life itself - cell division and replication is what makes us "alive", as it turns out.  This, for example, is why chemo makes our hair fall out - it is going after the most rapidly producing cells in our bodies, and of course, hair follicles are among those (stomach lining is a close second, thus the nausea).  Sorry to babble - but the book is really splendid.  The politics of cancer research fund raising (a whole history of the Jimmy Fund in the Boston area was a real eye opener; I lived there for many years) was equally interesting to me.

kmur

Thanks jpsgirl96,

I just read portions of the book via Amazon. I am going to read this one. Thanks again for the information.

Kim

Nikisezz

My husband is reading "The Emperor of all Maladies" and he is totally fascinated by it. Still waiting for my turn to get the book! I just joined this forum today, and I think that knowing people who have survived years out from a stage 3 diagnosis is the best "feel good" pill there is. I have the privilege of knowing so many of these people as I happen to work at the Breast Cancer Coalition of Rochester (have been for many years, and then, hello, it was my turn for a diagnosis). I am so happy to have found this Support group.

LindaLou53

It's really interesting to see the changes in treatment protocols and the improvement in survival statistics over the years! The trend is definitely heading in the right direction with more targeted therapies and the addition of hormonals as a mainstay.

With my first Stage 2A dx in 2000 I got the then standard protocol of 4 rounds AC 3 weeks apart and then 4 rounds Taxol 3 weeks apart.  When I got my new primary Stage 3C dx of the other breast in 2005 they could not give me the AC/T or the TAC protocol again so I got 6 rounds of Taxotere 3 weeks apart along with oral Xeloda taken on a 3 week cycle of daily for 2 weeks and off for 1 week.

I also started on Aromasin while taking radiation immediately after completing chemo and am still on Aromasin 5 years later. 2 months after completing radiation I started on IV Zometa and have been on that now for 5 years. I have no way of knowing which protocol or combination of protocols has been most effective but I am just thrilled to still be here NED 5.5 years out from my very locally advanced Stage 3C dx.  I get my annual CT scan this Friday so I hope to be back here next week with continuing good news!

To Nancy and all the other newly dx'd Stage 3'rs, take heart and hope knowing that we all benefit from ongoing research and updated protocols!  I just pray for endurance and good timing to hang around long enough to keep benefitting from the new treatment regimens! 

Best wishes and good luck to us all! 

kmur

Hi LindaLou 53,

 Thank you for sharing this information. It is always so great to hear about you ladies who have fought and continue to win. I wish you continued good news and please let all of us know how you are doing. I think it can be so scary to be told "you have breast cancer" , I was given 3 rounds FEC followed by 3 rounds Taxotere,28 rads and now take Fareston . I have learned much about not paying attention to  staging/prognosis as it exists today. As I said...I think you ladies and us new gals will be the new standard,but I also think more and more treatments will come as well. Again thank you for sharing. Hope and positive thinking are powerful medicine!!

Kim

weesa

I've wasted so much energy in the past worrying about sliding to stage 4!!! I had lymph nodes with large tumors surrounding them, a ki-67 of 75% etc etc. and have never heard from my breast cancer, so am assuming it is long gone. I'm not good about following any complementary regieme, and, in fact, lead a pretty debauched life compared to many of you.

So, carry on and fight to win. Us old-timers will be applauding you!

elmcity69

weesa, i love your post. especially the part about leading "a pretty debauched life"...good to remember that we can and SHOULD tear it up sometimes!

i don't bother with stats. who needs 'em, anyway, except statisticians (whoa say that ten times fast).....

this is a great and hopeful thread.

GRITS

Hi Nancy,

I have been off the boards for some time now.  Seems like for so long cancer was a constant in my life, well, now I find that it is still in my head but not all consuming.   I began my journey in Feb  2004 at  Stage 3 and with lymph nodes larger than my tumor in my breast.   I had my chemo, then my surgery, then radiation.  So far things are going well and actually I now go a few days without cancer ever crossing my mind.   So I may not be to that long life stage yet, but I am 7 years out and that is something I could never think about back in 2004. I still remember all those that were here that traveled that journey with me so I come in to check once in awhile and let others know that better days are ahead.   Don't look back look ahead....a long life is there waiting on you.     GRITS

Katarina

I had two major cysts on my right breast over the course of 2 years-- they never said it was cancer but then they missed my 12.5 cm tumor in the same breast for years and thought that was just a cyst as well. 

I have ILC so very interesting to hear that tumors or bumps on the outside skin are also possibly cancerous. Is that the same as Inflammatory Breast Cancer?   Nancy, can you share any online info for outside on the skin breast cancers?

My friend was stage III and had all her treatment and NED for 8 years. She had a recurrence last year and it appeared as a rash on her chest where she had had her BMX.  The rash on her chest signaled IBC and she's now stage IV.  She noticed the rash and thought something was up. Wow. The rarer types of invasive breast cancer are weird and sneaky. I wish I were in the IDC 80% group but sadly I'm in the minority and things are a bit fuzzier here.

kmur

 Hi weesa ~ I love your post also ~thank you ~ it is sometimes tiring trying to be "good" all the time. Being bad is sometimes more fun.

Grits~ thank you for sharing your take on looking ahead. That is a great way to look at life even for those not facing breast cancer. I also had to say I love your cyber name and the great state of Alabama ( one of our favorite places!!)

Thanks for this thread. You-all make it easier to keep marching forward!!!

Kim

jpsgirl96

Nikisezz - So sorry to hear it's "your turn"...will be thinking lots of good thoughts for you.  I THINK I would also have enjoyed the book when I was in treatment...but that's one reason I have hesitated to recommend it here.  We all have different tolerences for information, and at different times.  Still, as I said, it is really a page-turner.  Leigh

Anonymous

I'm so glad I found this thread. I was diagnosed back in October 2010 and have finished chemo and surgery. Surgery came back with lymph nodes that had never presented on any scan which sent me back into worry. I'm not glad to hear that others have to deal with this because of course nobody wants to, but its nice to know there is still a long road ahead.

Anonymous

Thanks for posting all of your stories. I am in the throes of chemo now, and will be til October of NEXT year (I get an extra year of TX for the HER2+ thing), and this is just the information to encourage me to keep going.  Much love to all my sisters who have gone before and thrived.

many

A cancer's stage does not change



An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed, only information about the current extent of the cancer is added.

For example, if a woman were first diagnosed with stage II breast cancer and after the cancer went away with treatment it came back with spread to the bones, the cancer is still a stage II breast cancer, only with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it is called a stage II breast cancer with metastasis in the bones. In either case, the original stage does not change and it is not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status.

This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

At some point you may hear the term "restaging." Restaging is the term sometimes given for doing tests to find the extent of the cancer after treatment. It may be done to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often this involves the same tests that were done when the cancer was first diagnosed: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. Rarely, after these tests a new stage will be assigned, written with a lower-case "r" before the new stage to note that it is different from the stage at diagnosis. The original stage at diagnosis always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, although it is more common in clinical trials

SOURCE:http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/staging

Anonymous

Many - this is very interesting and it's the first I've heard of this technical definition. I thought people automatically became Stage IV when the cancer spread.

What is written above does seem to be the way people use the term Stage IV here - the Stage IV message board is filled with women who started off at an earlier stage and then had a recurrence.

batwoman

Scientist here. Not a medical one, though. I've checked out the Kaplan-Meier survivorship curves and am bummed out by the stats. I know we are all not statistics but only 40% of us make it to 10 years. Lots of mitigating factors, of course, such as staying on estrogen blockers, number of nodes, size, etc. but sure is hard not to be depressed. I had to have a major lung biopsy (Video-Assisted Thoracic surgery--VAT procedure) to make sure I was not stage 4. It was histoplasmosis. So, got through that. But now, 10 months after implants, the pain is excruciating. From what I have read, it's post-breast therapy pain syndrome. Anyone else have this?

Anonymous

Batwoman: Welcome!

I just got cheered up by this calculator:
http://www.lifemath.net/cancer/breastcancer/therapy/index.php

Even with my cr*ppy node status and huge tumor, it gave me a 75% chance of still being here in 15 years. I'll take those odds!

I haven't done reconstruction, so I can't help with that, but there are some great threads on here where people know a lot more about issues surrounding that.

Anonymous

Are you sure you aren't looking at Kaplan-Meier survival stats for breast cancer *without* treatment? Those numbers probably do indeed look awful.

cellomomof5

jpsgirl96 - I absolutely loved that book.  Great reading - and if you don't have a strong science background, the science is embedded in both historical context and modern day patient stories in a way that makes it all relevant, and not difficult to grasp. 

sweetbean

hi batwoman,

(I post here because I am borderline IIb and IIIa)  Don't listen to the statistics.  They are based on women who went through treatment 10 years ago.  It doesn't take into account how much treatment they had, whether or not the completed all of it, their diet, lifestyle, etc.  I could go on and on.  You are not a statistic. 

batwoman

Hi sweetbean:

I teach graduate college statistics. I know I am not a statistic, but as I explain to my students, the stats are the resulting evidence from scientific studies. Your particular risk may be 10% or it may be 90%; there are confidence levels around each estimate. However, when a study determies that someone has a 73% (or whatever) chance of survival then you can pretty much assume YOU have that chance. It is a chance--same as if you calculated your chance of winning the lottery (which is way, way, less--by the way, your risk is never 0% or 100%, to whoever thought that). I do appreciate that the data are from older studies, but I tried the risk calculator Windlass posted--a very good site, in my opinion. I think that calculator includes the most recent statistics, so I guess my chance is a bit better than I originally thought. We are basically all statistics when it comes down to it.

So, that said, my (unscientific) opinion is that being depressed, angry, betrayed, and ready to chomp doctors' heads off is a perfectly rational response to finding out that you have stage III BC. I get a little annoyed when people tell me to look at the positive side and think happy thoughts. My best friend is so afraid that if I am a little down, it will make my cancer come back. I have to explain that the statistics show that attitude has no effect on outcome. A positive outlook only makes your family and friends feel better. Which is not all bad, actually....

Anonymous

Thanks for weighing in, batwoman. It's good to hear from a statistician on this.

batwoman

Thanks, windlass! Many folks don't understand what the statistics can and cannot tell you. Stats cannot give you your very own personal chance; it gives you the chance you have of survival based on the population subgroup of which you are a member. That means there is an average survival and a variance around that average. There are also outliers (those lucky ones who have survived WAY beyond the spread of points). Because our medical research system is evidence-based, it often takes an awfully long time to get results that translate into clinical procedure. So, often folks don't trust the "statistics." Those of you who are in clinical trials should be celebrated as heroes; you will set the stage for better treatment and better outcomes! You will be a statistic, but wouldn't it be excellent to be in a study that was cut short because it showed the treatment worked and then they started giving that particular treatment to everyone?

Cat123

I have been very down today and have loved reading all these positive stories.  Sometimes I thing this 'staging' thing is quite doom and gloom when really it is just a numbers game....#of nodes, etc.  Reading positive stories really helps me to feel positive.  I had dose dense ACT, prior to that leftmx, then recon then rads....done now but feeling down as once you are finished you feel like there is not safety net.

Anonymous

Cat: I've been thinking a lot about that. Because I have HER2+ cancer, I get that extra year of hand-holding with Herceptin. (In my case, TDM1, as part of a clinical trial.)

So while all my lucky April 2011 Chemo sisters are graduating and getting "Done with Chemo" parties thrown for them, which makes me feel sort of bummed that I still have Taxotere, and Rads, and then 10+ doses of TDM1 ahead of me, there's a part of me that feels bad for them that they are sort of being told "Good luck" and sent off on their own.

I think that's one of the huge advantages of this board. We can continue to be there for each other after the oncologists have bid us adieu. I can't imagine how lonely it must be for women without this support network to talk through these issues and fears.

Everything I've read says that the two toughest times for BC patients are right at diagnosis, and when the treatment ends. We're in a sort of no-man's land "after treatment." We BC sisters are here for you as one form of safety net.

Can you find some other ways to build yourself a safety net? Like exercise, or diet, etc? I am already strategizing how I will cope with "post-treatment" when the time comes. I have major exercise fantasies, and detox fantasies, and antioxidant fantasies, and...

sweetbean

hi batwoman,

 i guess my problem with the BC statisticsis that they are based on very little information - just your stage and maybe grade.  it doesn't take into account your diet, your stress level, your fitness level, your compliance with treatment, etc.  there are lots of factors that go into your survival, but the risk calculators don't take those into account.  So I have the same survival chance as someone who still drinks alcohol, eats meat,sugar, and dairy, doesn't exercise, has a high-stress lifestyle?  I'm not saying those things will 100% protect you - I know that there are women who did everything and still got mets.  But they do make a difference. 

Anonymous

Rennaus:  Did your sister have many nodes positive?  It would be interesting to compare ....  I am so glad she has been NED for that many years.  Also, was she put on any AI's back then? 

Laura_Jean

Hi all:

 New here and enjoying this thread...great positive stories....I;m Stage IIIc and halfway through radiation and anxious about the end of treatment...I am ER+ so able to take Tamoxifin and then AI so not really done with treatment...but I must confess I like going to radiation (weird I know) as I feel like I am doing something every day to beat my cancer. 

Laura Jean