courage to say no to chemo

I have read a few posts now that state that those of us who have declined chemotherapy are encouraging women who are struggling with that decision to do as we have done.  This has me scratching my head in confusion as I have reread all the posts in this thread and nowhere have I seen anyone doing so.  All we have attempted to do is talk about the other side of the coin, one that is rarely discussed by oncologists or other physicians.  I have always believed that knowledge is power and with breast cancer, I think this is especially true.  Perhaps not everyone had my sort of experience with the allopathic world but all I know is that I was never given any choices - I was simply told:  "This is what we are going to do to you."  I felt like I was on this giant breast cancer assembly line with no way off. 

A breast cancer diagnosis is a very scary thing but I forced myself not to panic and instead to do a lot of research and ask a lot of questions before making any decisions at all.  Personally, I think it all comes down to a matter of risks versus rewards and that ratio is different for every single woman depending on the particulars of her diagnosis and the type of chemo the oncologist is recommending.  I was horrified when I discovered that the type of chemo that my oncologist had chosen for me (something called FEC-D - the D stands for taxotere for some odd reason) is the same adjuvent chemo he gives to all of his breast cancer patients whether they be stage 1, 2, or 3.  This made no sense to me.  And we are talking about a highly respected oncologist working out of one of the top cancer hospitals in Canada - Princess Margaret Hospital in Toronto. 

When I weighed up all the risks associated with FEC-D chemo and compared it to the possible reward (at best a 6 to 8 per cent improvement in my 10 year survival rate - a statistic presented to me by my oncologist), I made the decision that chemo was not for me, a decision that my family doctor actually agreed with.  I don't think anyone who refuses chemo should never do so lightly and should have a firm plan as to what they are going to do instead of chemo.  I use a protocol that was designed for me by a naturopathic doctor and one which my family doctor approved.

In my opinion, the decision on whether or not to do chemo is a highly individual one.  All I would like to see is women being given ALL the facts and not being brainwashed one way or the other.  I also hate seeing women who are chemo advocates attacking those who have refused chemo and vice versa.  None of us chose to get this nasty disease and we all need all the support we can get.  We can all choose the path which is right for us, never condemning someone else for their particular chosen path.  Knowledge is power so let's all share our knowledge and gain as much power as possible to attack the cancer beast in whatever ways work for us personally. 

Well said, Tara, and good luck.  My personal bugaboo, that I have NEVER seen fully debated on these boards, is the way so many women get oophorectomies.  I know it is sometimes necessary -- for women with the BRCA mutation (I would have done it in a minute), for women with more advanced or aggressive bc -- but I am shocked by the number of stage Iers who are told to have their perfectly healthy ovaries removed.  This absolutely has long term consequences for your overall health and yet it is rarely questioned.  I raise this because it helps me understand why women who have declined chemo feel so strongly.  I declined the ooph, and am somewhat dismayed at the doc who recommended it because he poo-poohed the side effects.  But having said that, I do think there is a place for oophorectomies in saving lives, so I would never say that another woman in a different situation shouldn't have one.  I just know me and my situation.

Hello, everyone, I agree with PatMom and Mathteacher. It is a tragedy how many of us are herded into chemo for breast cancer. Fear is a distorter of the facts, for both well meaning doctors and hard-charging patients. As Pat says, chemo may be useful to prolong life for Stage IV and can shrink a tumor - the poor stage IV person who probably got to Stage IV either despite early-stage chemo or maybe even because of it. Still, chemo has a niche in advanced breast cancer. It has also shown promise in a few rare cancers including childhood leukemia, cancer of the testes and penile cancer. But for major organ cancers, it is by and large a disaster and has been for decades. Thank God for Herceptin and hormonals, although they have their own limitations.

I have a fantasy, and that is when a woman is where I am, and so many others are--you have cancer!!  Surgery!!  Chemo in a three-month window!!--that we could hire some knowledgable person to give us ALL the facts from both sides.  I read as much as I was able. But honestly, in that timeframe, it's just not possible to do thoroughly.  I thank breastcancer.org from the very bottom of my heart for what would have otherwise been an insurmountable task. 

Being a 39 year old cancer patient is alarming as all getout.  We've got the whole factor of being pre-menopausal to-boot, and with that goes the ovary/hormone suppression debate.  I agree, it's a tragedy any of us is herded without adequate information.  I believe it would take me years to gather that much on my own.

This has been a sad day for me as a result.  You DO have to have a mini-PhD as I call it to wade these waters.  I'm not a dumb gal, not a Yale-y, but surely more capable than most.  I could cry a river for those of us who are alone, afraid, and not able to make their way through the mountains of very confusing info.

Athena, I just have to disagree about chemo for other cancers.  My niece had a highly aggressive brain cancer that had metastasized throughout her brain, into her spinal cord and into her spinal fluid.  Surgery and radiation could not cure this cancer, though she had both.  Chemo cured her.  She is coming up on the 5th anniversary of the end of her treatment and has been cancer free all that time.  She was 6 years old when first diagnosed.  Her cancer was a disaster.  Chemo absolutely saved her life.

Does anyone remember Susan Sontag?  Diagnosed with stage IV breast cancer in the 1970s and had an early form of chemo that cured her.  She died decades later.

 Many lymphomas respond well to chemo, even at their most advanced stage.

But obviously it doesn't work for many cancers and for everyone.

This idea that chemo will make your cancer advance is pure bunk as is the idea that it is only effective at stage IV.  Stage IV bc is still bc, it has the same structure.  BC doesn't become a different disease when it metastasizes, but it does become virtually impossible to cure.   Tumor load is critical.  The fewer cancer cells to kill, the more effective the chemo in killing them off.  Thats why we have multiple rounds of chemo.  Each round will only get at the cancer cells at a certain stage in their development, that won't be all of them.  Round two gets more, and so on.  But if you have tumors in various parts of your body and tumors that can't be removed surgically, that chemo has to work all the harder and it is extremely unlikely that all the cancer cells will be killed.  Why would I want to wait for that?

I know that.  She contracted leukemia because of her chemo, DECADES later.  She had an early form of chemo in much higher doses than given today, with much higher likelihood of a secondary.  Yet, she was thrilled to have it and to have survived and she extolled the virtues of employing such state of the art treatment, even after the leukemia diagnosis.  Her brilliant, seminal book, Illness as Metaphor was written in part to be a clarion call for patients to rely on science, doctors, treatment, rather than superstition.  You may want to read that book.  She never saw that stage IV cancer again, and praised the chemo that cured her to her dying day.  Thank God they've gotten better at treating women with much lower doses than she had.

Yes, those of you with fixed ideas will say -- ta da -- the chemo killed her, this proves our point.  Personally, I would rather have those decades free of cancer, even with a leukemia when I'm in my 70s, than die of breast cancer in my 40s. 

That is quite the statement Jane. I  normally stay out of these kind of these kind of threads but this thread is really bothering me.Even the person who started the thread is shocked.

Seriously?  You think its preferable that she die when she was in her early 40s of breast cancer, with a young son than die decades later as an elderly woman who had raised her son all the way up and written numerous, important books?  Well that would be dying for principle, but what principle it is that you are promoting here isn't clear.  Too bad no one told her she was supposed to take one for the team and die young.

{Whoops I was responding to message at the bottom of page 2, sorry for any confusion}

Worldwatcher, I totally understand your decision to forgo chemo with only one positive node, I almost did the same last Dec, and for the record, here are three review articles that I gathered together to take to my onc to say so. Each of these articles have references to studies with statistics, reems of statistics. <sigh> As I mentioned above after all this research, I really surprised myself that did up trying the chemo ( for a variety of personal reasons) and would not have hesitated to pull the plug at any time if I decided se's were too risky. OTOH I believe the oncs would be the first ones to stop if  the risk of permanent health damage became evident.

Anyway here's the start of my journey to prove to me that chemo, in my case, would not be of much benefit, if any, over endocrine therapy alone.

{great title} Hormone receptor-positive early breast cancer : controversies in the use of adjuvant  chemotherapy. Filippo Montemusrro and Massimo Aglietta.  Endocrine-Related Cancer (2009) 16 1091-1102

Adjuvant Chemotherapy in Older Women With Early-Stage Breast Cancer. Hyman B. Muss [et al]. NEJM  May 14, 2009  Vol. 360 No. 20

Infiltrating Lobular Carcilnoma of the Breast: Systemic Treatment. Simone Anna Farese and Stefan Aebi. Breast Disease 30 (2008-2009) 45-52.

I think one needs more courage to get chemo,surgery,radiation, what ever is needed when one has the fight inside. But it is hard to be brave when one is scared and overwhelmed with a diagnosis of B.C.

 I made my plan of treatment, I wanted my breast out asap; 2 breast were not good to me if dead, I wanted the most aggressive treatment, had chemo.

During my surgery they found a second invasive different B.C.

One makes choices,one is not sure if it is the right one, but for me my choice was the best. I know it is a personal choice. I wish you the best.

Hi! worldwatcher,

I am done 5 months of AC+T chemo.   Misery.   I am 61, and respect your choice not to do chemo.   I know I would think long and hard before having chemo again if I was 70.  I don't see anything wrong with any of your posts.   Other members on this site should take a chill pill.

Blossom

No one should call you a fool for making your own decisions about treatment.  I made the decision to not do chemo early on with the understanding that I was making the choice between quality of life and surviving a few months longer.  It's a very difficult decision.  In my case, months after my first pathology report an OncotypeDX test showed that the first was incorrect.  The major factor pushing me to consider chemo was the result of the incorrect test that showed me as HER2+ when the DNA test showed the tumor to be at the low end of "equivocal". 

Might I suggest that you get a second or third opinion if you haven't already.

There is no guarantee with any of the treatments...if there were, it would be simple. Good luck to you.