courage to say no to chemo

I decided to do chemo (surprised the heck out of me that ended up doing so btw) even though all the research showed any benefit over and above doing hormone therapy would be minimal (but still an overall benefit). So why do it? 

The reasons just kept piling up in my mind, some of them darn right silly, I was curious for one thing what it would be like not having hair, I wasn't ready to face having to drive in snow to go for radiation, that sort of thing, but what it came down to for me too was quality of life. I was age 65, chemo would only take a few months, hormone therapy otoh was five years. What if  for some reason I wanted or had to stop HT?

ETA: Having chemo made it easier for me to refuse suggested radiation to the regional node (superclavical/upper axilla) areas lowering (I hope) my risk of getting lymphedema. 

Worldwatcher brings up great questions--some of them I think can be answered by lifemath.net.

I have been to lifemath.net. Ran all kinds of calculations.

The difference in the mortality rate given my age over a period of the few years that I would expect to live is not that large. Familial cause of death entered into it, the risk would be greater than the reward for chemo, and possibly for the Herceptin if I could get it.

Circumstances for each one of us will differ.  Those who have the greatest incentive, children, age, spouse etc.  will be more prone to accept the SEs.  There are probably some who fit my circumstances who are willing to do the surgery and radiation but are not willing to spend our physical and mental resources on the gamble that chemo will give us a few more months at end stage. 

My father suffered through chemo and experimental treatments until the end, and he had no chance of surviving from the time of diagnosis.  Others in my family wasted away in nursing homes for several years.

At this point, I am independent, able to do for myself, enjoying my life and my children...and I see no point in putting myself and them through weeks of chemo.  They are aware of this and respect my decision.

I believe a lot of things, but chemo is not something I would put in the category of faith, more like science.  I've read the posts as well and I don't question them at all.  There are, of course, women who have a difficult time with chemo.  But the ones who post are a self-selecting group and it can be distorting to read those posts over and over again.  I have lived in breast cancer land for 6 years.  I meet women all the time who are going through it, I am introduced to them as someone who has come out the other end and can offer support, which I am happy to do.  When friends have gone through it I am a person they talk with about it because I've been there.  So when I say the vast majority of women I know who have gone through chemo did OK with it, these are real women, not a self-selecting group.  If the odds that it would be horrific were so high, wouldn;t this be happening to at least some of these women?    The vast majority of women I know who have gone through it, say that it isn't as bad as they expect.

And I count for something here as well.  Read through this thread.  There are some women right here who have gone through it and found it wasn't as bad as they expected while there have been many posts from women who have never had chemo comparing it to hell.  This isn't a leap of faith, this is listening to women who have been through it as opposed to those who are justifying their decision not to. 

Just saw this thread.  You guys all make valid points.  It really is a personal decision - and there are people out there that do chemo and do not have the horrid side effects.  They are probably out living their lives and do not need to post in message boards because they have nothing to seek support on  I have round 3 tomorrow - my complaints have mostly been consitpation, flu-like symptoms on day 4 and 5.  Most of my SE's probably stem from the Neulasta side effects and antiemetics (constipation) and the biggest - hair loss.  I met 4 people in person since diagnosed, all in their 30's and said chemo was doable.  If anything, it is more of an annoyance to do chemo for me - it disrupts my life taking care of my toddler and baby ...I don't have time to be fatigued.  If you pop to the July Chemo thread - there are people that have minimal SEs and very positive attitudes about chemo.  I come here for support and education - you ladies all have something very important to teach me about this disease!

I think we can all see things differently.  My brother passed away at 50 from Acute Myeloid Leukemia 4.5 years ago.  He died within 6 months of diagnosis.  Did chemo do anything for him in that short time and was it worth it?  To our family it was.  It enabled him to get his affairs in order and take one last trip.  We all got to say our goodbyes.  So while some will say chemo for 6 extra months is not worth it - to some people it is. 

To the original poster, taranebraska, I see that you went ahead with chemo.  Best of luck to you!  And best of luck to everyone in all their decisions they have to make do combat this disease. 

I hate seeing these boards go the mudslinging route. I don't think there are "chemo" or "naturopath" evangelists--they are equally dug in, and as I've said, mostly out of fear and knowing darn well neither side has it all figured out.

I'm interested in really learning more, and I'd love to hear some statistics.  Worldwatcher brings up some more interesting points about age and treatment.

I'm sorry,but suggesting an HER2+ patient (or node positive, etc) not do chemo if you aren't either a. in her shoes, or b. are willing to share some serious medical facts is plain irresponsible.  I'm not of the "go with the gut" camp in such serious matters.  Just one person's opinion.

I take neuropathy, brain damage, and other very serious side effects of chemo extremely seriously.  These are worth talking about.  Nausea meds that don't work are inconveniences for a short duration.  Important to parse these things out.

To be honest, mathteacher--I'm confused about the difference between overall survival and recurrence--someone brought that up here.  I think one poster here mentioned the overall survival stats on Herceptin are lacking.  But then I really don't understand how Herceptin is then considered the miracle drug it is.  Would love to hear more.

I'm asking sincerely, Worldwatcher:  isn't part of the point of chemo to keep the beast from coming back in the first place, not to tack on more months at end stage?  Maybe I am not understanding something.

MHP70,

Recurrence means you might get another lesion in the breast or somewhere distant like the brain. It's a criterion some studies use to show benefit for reducing recurrence. But doesn't address how long you will live--which is our ultimate goal.

Overall survival means how long you survive, not just from breast cancer but from all other causes. It doesn't matter if you recur less but may die sooner from the treatment.

There was a big discussion about this at one of the advocates conferences. Some drugs get FDA approved even though they don't make you live longer, they just modestly help prevent recurrence of breast cancer. So you may die sooner from other things such as a heart attack.

Everyone who does adjuvant chemo does so out of fear.  If you don't fear the cancer returning, there is no reason to even consider doing chemo. 

Anyone who is not afraid of doing chemo and dosing yourself with strong poisons is a fool.

Knowledge generally dispels fear.  The more you learn about something frightening, the more comfortable you become with it.  That doesn't happen with chemo.  The more you learn, the worse it seems.

Most people know about the hair loss and the nausea.   How many who have not been through it or thoroughly researched the issue know about the cardiac damage, or the peripheral neuropathy, or losing nails, or the increased risk of other cancers?   How about the risk of contracting opportunistic illnesses and infections while your immune system is compromised by the treatment?

There is a reason most oncologists advise patients not to go on the Internet to learn about chemo, the more people know, the more likely they are to say no.

Member_of_the_Club asks about stage IV women, and that is a whole different situation.  We know that chemo won't cure cancer, but it can help shrink tumors for a time, and that can be useful in the treatment of stage IV disease. 

The thing is, in the adjuvant setting which is what we are talking about, shrinking tumors, which is the only thing that chemo has been shown to do, is not a goal.  Eliminating every last cell is, and there is no evidence that chemo does that.  If you have some evidence, great, please share it, but I sure haven't seen it.

A quick google of breast cancer survival chemotherapy pulled up lots of studies.  here's one:

 http://www.pslgroup.com/dg/affe2.htm 

That study from 1998 does point out that there was a survival benefit among young (pre-menopausal?) women who do chemotherapy. 

At that time, Tamoxifen was not yet in general use, it was still in clinical trials.  Much of the benefit seen may well have been from throwing pre-menopausal women into menopause, in other words, using chemo as a hormonal therapy. 

There are other less drastic ways to acheive the same effect.

Memberoftheclub, you posted a news release, not a study. And the article did not address death from all causes--overall survival.

That is the trouble when people do a quick Google and don't know the terminology--and don't know they should be reading actual studies. Catch-all press releases don't make distinctions and are profoundly misleading.

If you have a potentially life threatening disease, isn't it worth it to know the difference between relative risk and absolute risk?  Isn't it worth it to know the difference between breast cancer survival and overall survival?

YES, mathteacher, it is.  A naturopath taught me the difference between relative and absolute.  I'm grateful.

I'm begging folks to point to real studies.  I welcome more information from both sides of this debate.

If I may paraphrase, what some are suggesting is that even in node-positive cases, unless cancer is Stage 4, chemo is questionable in whether it actually kills rogue cells.  That stance goes against lifemath.net, and I believe those stats are based on studies.

What am I missing?

I think I have made my position very clear. And I don't feel the need to "justify" it.

I assumed that there could be a civil discussion on this particular forum because the forum name suggests that there are women who are NOT going the chemo route.  It's disappointing to me that my motives have been attacked and that the agonies of the numerous women that have posted their horror stories are dismissed because they may be "self-selecting"..whatever that means.

It appears that there is a mind-set here that requires "justifying" the decision to do chemo when faced with someone who refuses it.  One wonders why?

I have read a good number of posts on both sides of the story. I am well aware that there ARE two sides to the story.  The motives FOR chemo are strong for some women to whom dying and leaving their children and families,for those who are very young and haven't had a full life.  Of course, these women have a strong motive to do any and everything they can to live longer.  By the same token there are a few who do not fit that template. I am one.

I saw a medical oncologist. He kept saying "I am YOUR advocate". At the same time he was completely inflexible regarding chemo or the possibility of stand alone Herceptin.  He was, in fact a chemo advocate.  He was NOT my advocate or he would have presented some alternative, since I made my position clear to him.

I have asked for some statistics on this thread.  They may not be available, in which case I wonder why. It seems that it would be a simple task to present evidence that chemo is worth the risk and the SEs.  I haven't found that evidence in my own search. 

 I have a simple question: "why should I put myself through the SEs and give up weeks, perhaps months of quality of life for the chance of adding weeks or months to my life span, those weeks which may be spent dealing with the permanent damage that chemo can cause?" 

I'm already dealing with neuropathy, it's not fun but it's "doable". I already have a severe case of GERD, and have reached the point that the meds for it are not as efficient.  I already am dealing with the "bile diarrhea" from gall bladder surgery in 1991.   There is no evidence that I have found on this board, or in extensive research that leads me to believe that these conditions will not be aggravated.

That said, I am still able to live alone, to drive, to actively participate in my community, to enjoy my family and keep up my hobbies.  The time will come soon enough when that will change.  I don't intend to spend weeks in the throes of chemo SEs which will curtail some if not all of those activities and aggravate the problems I am already dealing with.

At this point I have had the surgery, a clean PET scan and have finished radiation.  Who can tell me that there will definitely be a recurrence and who can tell me when it will happen?  And most importantly, who can tell me that by the time it DOES happen there will not be a  better method of dealing with it. 

Of course I know the difference between relative and absolute benefits.  Thats why the decision has to be based on your individual circumstances.  The folks who think no one but women with mets should have chemo will pick apart any posting, any study to the contrary.  Thats the definition of a fixed idea.  Some of want to prevent mets in the first place.

Pat is correct that we shouldn't overlook the power of hormonals while debating chemo.  There is some sense that for women who are highly er/pr+ hormonals may be more beneficial than chemo.  Thats the kind of finding that will enable more and more fine tuned treatment.  the goal is not to overtreat and not to undertreat, but to hit that sweet spot with just as much as is needed.  We're getting closer to that goal, though not fast enough.  To get there, we can't take anything off the table for ideological reason.  Every one of these treatments helps somebody.  The key is to match the right somebodies with the right treatments.