No chemo for me.

tibet

MsBliss

If your stats, with no chemo, gives you 30% risk and with chemo, it is 15% risk. Then I assume the chemo advantage is like 15%. How do you dissect the number? 

unklezwifeonty

NewAlex,

Without chemo 30% risk (30 women out of 100 will have recurrence)

With chemo  15% risk  (15 women out of 100 will have recurrence)

This means a 50% reduction in risk (from 30 to 15).

Titan

I am triple neg., stage one, no positive nodes..and there was NO WAY in hell that I would have turned down chemo...sorry  A few months of discomfort for any chance ( and it is a crap shoot) of living longer was a no brainer to me.

chumfry

There are serious and sometimes long-lasting side effects from chemo. There's no one right answer that fits everyone. And I'm speaking as someone who accepted those risks twice. After studying the matter, I believed the potential benefits were worth the potential risks.

For me, it was an easy decision because my initial tumor was 4.5cm and growing fast.

--CindyMN 

Babyface

I was diagnosed in 2004 with TN at the ripe old age of 45 and I was also lucky enough to have metaplastic BC as an added bonus which happens to be a very aggresive form of TN...(yep more than the usual aggressive)When I first came on these boards there were very few women who were TN choosing not to do chemo. Obviously times have changed . I did do chemo(only dose dense AC, since I had an allergic reaction and had to stop chemo I didnt get to Taxol), and quite frankly I had every possible side effect in the book, and am still suffering ill effects as a result of the chemo that I did do. The sad part about it is that some subsequent research that has come out indicates that with TN metaplastic the jury is still out on whether chemo works. All of that said, and as much as I absolutely did not have a good experience with it, I would do it all over again under the same circumstances. I am now just past my 5 year anniversary. Dh and I think of chemo as something that took me to the edge but allowed me to still be here and I dont know whether I've made it because of the chemo or in spite of it...lol. I do know that I'm a super type A person and without any doubt I know that if I gawd forbid have a recurrence I can look back and say I did everything I could do and I wouldnt have any regrets and blame myself. For me that was the deciding factor, but as most have said here it is a purely individual choice to make . Good luck with the decisions ladies !

gardenbeetle

Just wondering if anyone has read this: http://www.amazon.com/Questioning-Chemotherapy-Ralph-W-Moss/dp/188102525X/ref=sr_1_1?ie=UTF8&s=books&qid=1253051105&sr=8-1

MsBliss

Ralph Moss was part of the research team at Sloan Kettering that first investigated the use of a "laetril" type drug during the 1970's (80's?) I believe.  When the preliminary trials showed that it was working but SK administrators suppressed the data, Dr Moss resigned his tenure.  I am not sure about laetrile, but I do take Dr Moss' interpretation of the state of the art with some seriousness.  Look, if we have spread of the cancer, we have to hit it as hard as we can.  Chemotherapy is targeted and it is the best we have.  But, we are not incorporating other methodologies like nutriceuticals and fitness exercise enough.  It takes more than poison to beat this thing.

gardenbeetle

I've just started reading it as I'd begun to have doubts in my mind as to where the prognosis figures oncologists give us come from. Most seem to use a calculator called Adjuvant Online, which apparently recieves funding from pharmaceutical companies - at least according to the Oncology Times: http://journals.lww.com/oncology-times/Fulltext/2007/02100/Adjuvant___Online_Risk_Benefit_Profiler__Assessing.7.aspx

I thought this might explain why the figures seem to be rounded upwards to give a prognosis based on tumours to the next cm, rather than a more precise measurement. Tumours do not 'jump' from 1 cm to 2cm for example, so why should prognosis? Made me worry about bias in chemotherapy research in general.

Anyway the book so far is very interesting - might be useful to anyone struggling with prognosis statistics and the decision whether to go for chemotherapy.

cookie2009

Hi, Could you tell me all the supplments you are taking? Is vitamin d3 one of them? I am really intereested in hearing from you. You can email me bmmargie@yahoo.com. I also didnot get chemo or herceptin, and am feeling very nervous. Seeing the oncologist next week. 2nd surgery for reconstruction coming up and I am a wreck. Any well you can offer will be appreciated.

Cookie

gardenbeetle

Probs best to ask a nutritionist about supplements, as I believe it's possible to overdose! I am just trying to eat more of all the cancer-fighting foods - juicing lots of organic veg etc while cutting out the processed stuff, and drinking green tea (Sencha). I add a bit of flaxseed to my cereal sometimes and I do take spirulina and a multivitamin but not sure if it contains D3.

Sunris

Wow,

I am so impressed that this subject is flowing along so smoothly.  I also belong to another discussion board & on that site this is a subject that tends to get evaded because others do not support the fact that each one of us has the right to make our own decision whether it turns out right or wrong.

I commend you ladies for accepting each others decisions!  SUPPORT during our BC is what this is all about, and I for one support anyone regardless of treatment plan chosen / not chosen. 

 And for the record, I halted my treatment at approx. 65% of the way through. Decided that if the efficacy of the chemo hadn't done it's thing by then....well, too bad...I was no longer going to fear the risk of toxicity to my body.   

 Had a lumpectomy 8-25-09 with clear margins , full axillary dissection, 0/18 nodes ... all negative!  Will begin rads 10-6-09 .... Tumor had shrunk from nearly 4cm to 1cm.  due to neoadjuvant chemo even though I discontinued it.  It also destroyed my entire lymphatic system on the affected side which is the purpose of the full dissection. Onc felt it was due to the chemo. 

Best of luck to all of you regardless of what path you choose.  

Tanyar

I am so happy to find this thread.  I had bi mx April 2009 with immediate te reconstruction.  I am triple negative, BRCA 1/2 negative.  With my oncologist's agreement I elected not to do chemo because of the long lasting effects.  My DH is comfortable with my decision as is my DD. I have no history of cancer in my family. There doesn't seem to be right or wrong decision for each of us. It's what feels right to the individual just like the decision of 'door' to choose for our treatment. Supporting each other is what is most important.   Last week I had second stage reconstruction.  This surgery seems to be taking more energy to come back from which suprises me.  I am not much on exercise but eat somewhat healthy. 

Interested in naturopathic/homopathic medicine.

I look forward to reading more from each of you.

May blessings and peace be with each of you.

msmpatty

I decided to do a pretty aggressive course of chemo...but it wasn't an easy decision.  I did it because based on the numbers....it got me from about 78% to over 90% for 10-year for disease free and overall survival.  In other words, it halved the risk of recurrence or death.  I also have two family members who fought BC with chemo and one is alive and disease free 22 years later, the other the same at 16 years.  However, based on the numbers, which often show really small improvements of over-all and disease-free survival rates due to chemo, I can see how others could make the decision to forgo chemo.  The reality is...your personal chance of survival is either 0 or 100, right?  The rest is just playing the odds.

The thing that worries me is not the ladies who made careful and considered decisions not to pursue chemo, but those I've seen elsewhere in these discussion boards who made the decision because they didn't want to lose their hair.  That amounts to jeapardising your long term health to avoid a short term nuisance that is completely reversible!

gardenbeetle

Sunris - know what you mean about others not seeing this as a personal decision. I use another forum (UK based) and although it's great to chat there about other cancer related issues this is one decision it's hard to find support with. Some people have actually said they'd prefer not to have a choice or to hear about the percentages etc, they just wanted their doctor to 'tell them what to do'. I guess we are all different but I'd never make such an important decision about my future based on the advice of just one person, doctor or not, and it's my life, not theirs!

I have now decided, with my oncologists support (if not recommendation!) not to do chemo and consider radiotherapy alone, this scares me as well but it does appear to be quite successful at preventing local recurrance. As my breast feels totally different since surgery I doubt if I would notice another lump in that area - it is all lumpy, and may miss something in the future that could spread to my lymph nodes. I am of course worried about side effects - short and long term, but have an appointment today to discuss these. 

Msmpatty - I agree that hair-loss does seem a small price to pay. I haven't encountered any women refusing chemo on this basis alone - but as I said I generally use the UK forum where hardly anyone seems to refuse chemo at all. When I was first told about chemo thats what I thought - 'oh no, I'll lose my hair' - but didn't care if it would give me more chance of watching my son grow up. But I very quickly realised once I started researching that hair was the least of my worries! There are so many reasons for my decision, one of the most important being the risk of death from treatment itself (ie within 30 days of chemo administration) my oncologist couldn't give me exact statistics - but figures from various research seem to indicate between 1 and 5%.   I appreciate that this is less than the 7% benefit chemo might give me over 10 years, but to me a quicker death carries a lot more weight if that makes sense!

I am also interested in hearing about any complementary methods that have helped others through radiotherapy and/or recovery in general. 

Hope you are all doing ok! GB

nonijones333

Hi ladies, guess I need to put my 2 cents in. 22 year survivor here, triple negative and never had chemo. Again in the other breast 6 years ago, at that time I had to get my pathology report and there it was, triple negative of course triple negative is a new word, but I was negative for hormones.   22 years ago if no nodes no chemo was given. The second time I had stage 11 and again no nodes. I did not take cemo again, just went with bi-lateral. First time had lumpectomy and 5 weeks radiation. I guess it's a crap shoot. I went against my oncologists recomendation to have chemo but I refused. I'm happy to be here 22 years later.

On another note my darling daughter was diagnosed at 34, cancer stage one in both breasts. I was happy that she choose chemo, 5 1/2 years ago, 6 months after my second diagnosis. Ya wasn't a good time for us. I was 39 the first time, now 63. Imagine i'm getting old!!!

God Bless, Noni

activern

Great posts and commentaries.  We make our own educated life decisions and I respect all of the choices that you wonderful persons have made - congratulations!  I have decided to do chemo knowing all the pros and cons from 12 years of research from my first diagnosis.  Love ya all.

gardenbeetle

Athena204 - I agree with your last post. I have now read the whole book, shocking stuff, though it only confirmed what I already suspected. Most people seem not to have heard of Ralph Moss - at least in the UK, surprised he's not more widely read. Glad I read it as now I feel even more confident about my decision.

I may die from breast cancer chemo or no chemo. At least after a few weeks of radiotherapy I should be able to get on and appreciate what's left of my life, for however long that is and live it to the full - while using holistic treatments which I actually enjoy to give myself the best chance I can. My family and close friends agree and are supporting me on this now which helps. 

Hope everyone is doing well - GB

Babyface

Msmpatty

   Just read what you said about chemo and losing hair I agree with you ! If anyone is making the decision to forego chemo for that reason let me give you my personal good news story on that issue. I had fairly long(mid back) hair on diagnosis. Of course by my mid 40's my hair had been through the mill with blow drying, perms, straighteners and the like over the years and was starting to turn grey enough that I was about to start colour. Lost it all(and most of my lashes, brows, leg hair, underarm and everywhere else...lol). I now have the best hair in the world. I really do. I have people constantly say omg your hair is so healthy . When it first came in I looked a bit like a french poodle but after about 2 years it went into a long wave and knock on wood has stayed that way. Now I literally have to do nothing with it. The colour came back without any gray at all(which was really bizarre I thought) and even now I am just starting to do touches of colour in a couple of places ...nothing compared to before. So I always say that at least chemo gave me something that I really like

fmakj

I have been very nervous about not being offered chemo from my onc.  I have questioned him about this and he said that he took my case before the board (at the cancer center) and it was concluded that the negative se of the chemo outweighed the positive in my case.  I am now pushing genetic testing and want an mri done to ease my mind.  The comments here have made me feel a little better about not having chemo!  Thanks.

gardenbeetle

Athena204, sounds like you had a similar experience to me! My oncologist also has a very good reputation, and I asked her those same questions and got the same answers. I also asked these ones:

Q. Will chemotherapy kill all cancer cells currently in my body (if there are any), or just some of them? In what proportion of cases?

A. We don’t know.

Q. What percentage risk is there of heart, lung and brain (mild cognitive impairment) damage from the chemotherapy I am offered?

A. Lung, no risk. Heart, very low risk at the dose you are prescribed. Brain, can be some memory loss, occasionally permanent. But we have no statistics.

Q. What percentage of people with early cancer (stage 1) have died during or within 30 days of chemotherapy?

A. Don’t know. The most likely cause of treatment related death is by infection due to lowered immunity. But no statistics. 

Shouldn't they really have these statistics? To my mind pretty crucial information. There seem to be plenty of figures available for the BENEFITS of chemotherapy! However the oncologist seemed in a way to welcome my questions, and actually encouraged me to email her with more if I needed to. I'm also seeing another oncologist shortly (for a second opinion) - although I have already made my decision I am curious to see if I can get any more answers. 

fmakj, I don't think chemo is recommended for anyone with a tumour under 1cm and negative nodes, nomatter what it's status, from what I can make out...

gardenbeetle

Re having our heads chopped off...

Since I've been diagnosed with cancer, it's amazing how many people have come out of the woodwork offering their support. People I've never even met, friends of friends have who've been through chemo etc have emailed me with advice and encouragement. However since I've made the decision not to do chemo after all... it seems much of that support is no longer available. It's as if I've told people I don't really have cancer!

A woman on another forum PMed me wanting to meet up as we live in the same area. When I told her I wasn't having chemo she was no longer interested. She said "You're stupid, it's the only way!" This is without knowing any of the details of my diagnosis, grade, stage etc. I am far from stupid and no-one has ever called me that before in my life. 

I think 'having chemotherapy' has become synonymous with 'having cancer'. Looking back, I remember the first thing I said when the consultant told me I had breast cancer was "Will I have to have chemo?" as even in my mind the two were inextricably linked - then. But having learnt over the years that doctors can very often be wrong, and having an inquisitive nature I went away and did research. 

MsBliss

I am not going to be doing chemo, and probably no rads.  My bc is triple negative grade 3, with high grade DCIS on the periphery of the tumor, so it is a nasty one. I could not do chemo because of secondary issues, so the decision was kind of made for me. Although some of the doctors I saw on consult thought that they could wave their magic prescription pads and control any mild or rampaging issues, even hospitalize me if necessary, they did not really comfort my doubts. 

So I made it my business to educate myself with Dr Google and Pub Med, Mercola, Ralph Moss, Life Extension, etc.  What I learned was startling to me and it kind of confirmed my doubts about getting chemo in my personal setting, at least for my stage as it stands now. 

I have been startled to meet more people who support my choice than who don't.

It is not that I am not doing anything--I am removing some bad habits and issues, and adding some evidenced based supplements along with a better diet.

I believe that chemo and rads have their place.  I believe that they can be miraculous--but to expand chemo to someone like me was a business decision--it was vertical marketing.  Not too many years ago, chemo was not given to stage 1--but so many women with stage 1 cancers were dying from progression of their cancer so the recommendations were changed, and this is reasonable.  But no one looked at the exact nature of the individual cancer, whether it was a particularly aggressive cell or not, whether low endogenous Vitamin D status could be the cause, or whether the health habits of these women could be raising their risk factors for recurrence.  Without these answers, I cannot put my full faith into the chemotherapy options as they exist today.

Sunris

MsBliss!!!!!  Hey girl!!!!   Rather amazing that this same conversation "thread" would NOT have taken place on a different site ( the one we both go to)  isn't it ???  

 Wow, I would hate to even see the bashing that would have immediately occurred!

Good to see you, girl!  

 Hugs,

Dawn

dsgirl

Hello everyone,

I too decided no chemo, my recurrence rate was 1% to 5% better with chemo than without. Or as they put it in the report called "Shared Decision Making" :1 out of 100 women are alive because of chemotherapy. That's the 1%.  The other page lists 5 of 100 are alive and without cancer in 10 years. The doctor actually agreed with this decision but was adament about my needing radiation.

There seemed to be no data comparing recurrence or longivity without radiation versus with radiation, so I did chose to do radiation.

All the "Shared decision Making" statistics, were based on surgery and radiation in my case.

There were 2 pages involving the "Shared decision making" report.

80 out of 100 women are alive in 10 years with no additional therapy. (Again it is understood that surgery, clear nodes and clean margins are established and radiation has been completed.)

The second page ads the very important 2 words, WITHOUT CANCER.

66 out of 100 women are alive and without cancer in 10 years.

Probably all cancer centers use the same model to figure our treatment options.

Another item on there was Hormonal therapy, I am er+ pr-, and onco doc. recommended femara for 5 years after radiation is completed. Because I have osteoprosis, she also recommended an IV infusion of Reclast for bonebuilding because one of femara's sideeffects is osteoporosis.

There is a big difference on the hormonal therapy report. alive after 10 years only list 1 woman, however the alive and without cancer after 10 years list 10 women.

Still I am inclined to just look at the alive report, disgard the hormone therapy because of the SE's and needing reclast with it's own set of SE's.

This is where the quality compared to quantity comes in. Feel good and live my life for 10 years at least, or have terrible se's for at least 5 of those 10 years. trying to improve my odds with femara. None of the treatment options unfortuantely come with guarantees.

Please understand, I respect everyone decision to do whatever makes them feel good about beating the beast of cancer, and I am not trying to make anyone feel bad about their decision to do or not do chemo, or any other treatment available. Just listing my current take on the subject of chemo, and adding a few other thoughts.

dsgirl

PS Hi sunris (dawn) seen you posts on the October rads, I post there too, good to see you.

gardenbeetle

Thanks for the illustration Athena204, I haven't managed to find a UK equivalent but is probably similar. Looks like the death rate averaged around 32 per 100,000 for about 65 years! Starts to drop around 1995 - is this when screening was introduced in the US? Do you know what year they started using chemotherapy for stage 1 breast cancer?

Re people taking our decision personally, I think it's hard for some people who have chosen chemo (understandably) because they are suffering/have suffered and for whatever reason didn't feel they had a choice in their own case.

There is also the 'no pain no gain' philosophy - which I disagree with - in my opinion pain is always bad news! 

The name 'gardenbeetle' is a bit random really! I just like beetles (and most insects). Sorry to hear about your dog...

Nan56143

Dear athena204 & any other woman deciding to forgo conventional treatments,

I post on the TNBC site every day and I wanted to let you know that we now have a seperate forum for those women deciding against conventional treatments. The administration just opened this "support" forum tonight. I love this site...breastcancer.org, but I want to invite you to also post on the TNBC site.

I know many women who have had surgery but no other treatments, and are doing well. My daughter Lori had a mastectomy, chemo and rads, but she says that"if" this beast ever comes back that she will never take chemo again, for if it didn't get it the first time how will it get it the second time. Lori is doing well due to the fact that she is taking biodentical hormone replacement therapy (BHRT). She says she feels like she is thirty once again, and she is 47 years old. That is another story

Anyway, please join our site also, as there are women, and their families, who need the support of other women choosing a less conventional route for TNBC.There will be no intimidation, and I was so pleased to see that on this site the women are supportive.

Hugs,

Nan

gardenbeetle

Has anyone tried Medical Qi Gong? My accupuncturist has recommended it as apparently it is especially beneficial for those with cancer. It is an old Chinese healing system... there are a few places near me that do classes and sounds interesting. 

MomoB

Nan,

What site are you referring to that has a forum for those who decided

against conventional treatments?  I would be interested in it.  Thanks.

Sunris

MomoB,

There is an "alternative" thread on the forums over at the Triple Negative Breast Cancer Foundation site.....The thread  has just recently been added.  

TNBCFoundation.org

Nan56143

MomoB,

Sunris is correct, and here is the thread for just that particular forum. We would definitely welcome you there. Just scroll down the page to alternative treatments.

I just have to add something else. I could not sleep last night, and I was here on this site reading all of the posts from everyone on this thread. How kind and supportive each and everyone of you are to those not choosing to have conventional treatments. It may not have been your choice, but I did not read one harsh word to those women deciding to take other treatments. Thank you.

Nan

http://www.tnbcfoundation.org/tnbc/forum/forum_topics.asp?FID=8