No chemo for me.

nanabolini

I've decided not to do chemo.  Oncologist says recurrence risk with radiation and w/o chemo is 10 to 20%,  in my case probably closer to 10%, AND chemo would reduce the risk by about 5%. When I consider all of the possible side effects and my own health problems it's not a good enough outcome (in my opinion).  As always I'd like to to hear from other TNs.

Analemma

If I were in your situation I probably would not do chemo, either.  It has such poor results, overall.  A good chemo only works for about 30-40% of people.  I'm convinced that in twenty or thirty years we will look back to now as the dark ages in cancer treatment, once they have figured out a cure. 

That said, if I were you, I would certainly look into alternatives that have been studied.  I take curcumin, boswellia, resveratrol, and ecgc.  There's also been some research that strongly suggests that lowering body fat is effective in tri-negs in preventing recurrence, though I haven't managed that.

Joytotheworld

I made the same decision a few months ago.  The only difference was that the oncologist spelled out the 10 year mortality rate in my particular case (17 per cent) and told me that with chemotherapy, I could reduce that risk by 6% to 9%.  The chemotherapy regimen he was recommending was FEC-D and the list of side effects scared the daylights out of me.  I too decided that the risk versus potential gain simply wasn't worth it for me.

Because I closed the door on the chemotherapy avenue of treatment, I then instead started going to a naturopathic doctor and completely changed my lifestyle around - totally different way of eating, exercise, dry skin brushing, saunas, alternating hot and cold water in my showers, meditation, visualization, yoga and some supplements (curcumin, Vitamin D, Floressence, Modified Citrus Pectin, Melatonin).  I started all this at the end of January and to date, I've lost 37 pounds.  I still have a long way to go as I was very overweight but I've never felt healthier in my life with lots of energy to spare.  I know that this was the right decision for me.

Joy

VickiG

Good for you Joy!  Sounds like you are doing all the right things to take care of your TOTAL health.  I stopped taking my curcumin/turmeric a couple of mos ago & really need to get started again.  Keep up the great work & I hope you continue to feel better every week!

HollyHopes

I congratulate you on making your decision and even more importantly - feeling good about it! I chose a different option and had dose dense chemo and rads...am only now wondering if a bilateral mastectomy with immediate reconstruction would have been a better choice...

MsBliss

I am also not going to do chemo.  I have a secondary health issue which makes the chemo much harder to tolerate and risky.  I have a 1.5 cm, neg nodes, neg lv, but it is grade 3.  The numbers were something like a 30% chance of recurrence, and chemo would drop that to 15%--this sounds really good, but when I dissected the numbers, it was really more like chemo would give me 6 to 8% advantage over none.   I decided to go with targeted supplements and live style changes as well.

MsBliss

Is Floressence like Essiac?  Also, have you heard of Ave or Avemar?  Are you using coriolus?  Also, make sure you take the MCP away from food.  I saw a ND, and even an MD who was a specialist in cancer.  I am taking MCP, but she and the ND said I should only need it if I had mets....but I believe it can help prevent mets, so I am doing it anyway.  The MD actually recommended the Ave; she thinks there is something to it, and is writing a proposal with an oncology team to do a study on it.

tos

I was just wondering if any of you have any familial cancer history?  If so it might be wise to see a Certified Genetic Counselor to make sure you do not carry a brca 1/2 mutation.

Many brca 1+ women have triple neg, I believe around 85%.  If you were to test positive this would provide information you and your families would need to know.

 http://www.facingourrisk.org

I was just reading thru this thread and of course respect anyone's choice to not have chemo but didn't notice anyone discussing if they had been counseled about this possible risk.

I wish you all well.

nanabolini

tos.  Thank you for responding.  I mentioned to oncologist the possibility of inheritance factor.  He said "When you consider that 1 in 8 women get breast cancer, the inheritance factor  seems irrelevant." which I took to mean all women should be on the alert, get mammos, etc.Yes of course I discussed the risks with a specialist and of course I was advised to get the chemo.  In my case the risks of chemo are greater than not, in my opinion. 

Joytotheworld

Ms Bliss, FlorEssence is like the Canadian equivalent of Essiac.  And my ND did counsel me to take the MCP away from meals.  She also firmly believes that it can help lessen the chance of metastasis, especially if used for the first year following surgery.  I'm not using Ave or coriolus.  Can you tell me something about these two supplements?  My ND has limited the number of supplements she has recommended for me as she believes that the body can actually become overwhelmed by too many different supplements so she has selected the ones that she feels will do the most good in my particular case and ones that I can't get in sufficient quantities through the things I eat and drink.  She does have me eating a lot of things that I never would have considered putting in my mouth just a few short months ago.   

Tos, in my case there is absolutely no family history of breast cancer as far back as I can trace so the oncologists didn't see a need for BRCA testing for me.  As for being advised about the risks of refusing chemo, they pretty much hit me over the head with those and tried to pressure me into accepting.  Whether or not to agree to chemo or any other therapies for that matter is a very individual thing.  For me, I know my own body and I just couldn't see taking that sort of risk for what might be potentially only a 6 per cent increase in my survival rate.  And of course that's overlooking the chance that one of the more dangerous side effects might kill me.  The interesting thing about breast cancer survival statistics is that should someone die from heart failure or leukemia because of the treatment, they are still counted as a success and not a death statistic because technically the breast cancer did not kill them.

Joy

ddlatt

nanabolini - i agree with you, all women need to be vigilent about breast care.  genetic counseling is not the same as the counseling we get about chemo or radiation, and our oncologists are not qualitied to do true genetic counseling, which involves assessing all kinds of information about our family history, whether our mothers took DES, our physical histories, our age, etc. - one of the reasons genetic testing is relevant is because if we carry the BRCA mutation, we have a very high chance of developing ovarian cancer. that's why many woman who test positive have an oopherectomy.

here's the National Institute of Cancer's info about genetic counseling and testing:

http://www.cancer.gov/cancertopics/factsheet/risk/brca 

guitarGrl

I did have chemo, but I was in otherwise really good health. While chemo is indicated for triple negative, you need to do what is best for you. The experts are finally saying that bc isn't just one disease, and that treatment needs to be customized for each person. 

Nanobolini - you don't say how old you are, but if you are fairly young, I agree with ddlatt that you might want the genetic testing.  It does have an influence on you and on your children if you have any.

Joan2844

I was dx'd in 9/06 with stage 2b bc. I had TAC, lumpectomy, rads and xeloda. Lots of chemo. My onc congratulated me and sent me on my way. They watched me closely -- about every four months.

Within a year, I had an MRI, and more cancer was found in the same breast. I had a mastectomy, followed by Taxole+Gemzar, and the start of carbo. I could not finish the carbo b/c of an infection (got it with my mastectomy, I'm convinced) and blood levels that TANKED.

During this same time, I had a second opinion from a well known university doctor who recommended that I stop chemo because (quote) "I'd be metastatic within 2 years anyway." She wrote me off, just like that. That same evening, after my doc talked to her, he called me at home to reassure me of my treatment and to emphasize that he believed the chemo I was taking was worthwhile. He used 6-8% statistics, but said some hope was better than no hope.

Today, as far as I know, I am NED. I have fought this disease as hard as I know how to do, and if it comes back I will be able to say I did everything possible to beat it.

Trip-neg has received a lot of research attention in the past year -- they have found that platinum drugs like carbo really kick its butt. And PARP inhibitors are getting a good look, too. 

Trip-neg responds well to chemo, and I say that even with having a recurrence.

Each person has to make their own decision about chemo or not, but if you choose not to have chemo, then at least get a second opinion about it. It is a big decision.

For those who have opted not to have chemo,  I'd be interested to know what you are doing otherwise? If my cancer comes back, it will most likely be metastatic. You'd think this would scare me "straight" when it comes to diet and exercise, but I almost eat badly and slouch despite the disease.

 

 

Joytotheworld

The decision about which treatments to receive after a breast cancer diagnosis is a highly subjective one which can depend on a multitude of factors.  There's no one right decision.  People have to review all the facts, all the ramifications of their decision and then make the one that they know in their hearts they will be comfortable with, no matter what the future holds.  Personally for me, that meant turning down the chemotherapy.  Of course, the fact that my breast cancer was stage one and that the pathology report stated that there was no sign of vascular or lymphatic invasion did influence my decision.  I'm not sure what path I may have taken given a different set of circumstances. 

Since I had declined chemo, I then felt that it was imperative that I make some drastic lifestyle changes in the hopes of preventing a recurrence.  However, even had I agreed to chemo, I believe that I would still have pursued this route.  Otherwise, I would be concerned that whatever had caused me to develop breast cancer in the first place could easily do it to me all over again once the chemo drugs were out of my system. 

A lot of these changes were not easy.  To go from a junk-food-eating couch potato who paid no attention to what chemicals my hygiene and household products contained to someone who eats a very healthy organic diet, takes my supplements religiously, exercises every day, uses only natural products for cleaning and hygiene and carefully reads the labels on everything before purchasing it is a gigantic leap.  However, I did have the help of a wonderful naturopathic doctor who runs a breast cancer recovery program and she designed a step by step program for me so that the whole process wouldn't be too overwhelming.   But I was also surprised at how rapidly my body responded to these changes.  Not only did I start to feel utterly fantastic with tons of energy but I had a complete physical about two months after I began my new healthy lifestyle and my family physician ran a huge raft of lab tests on me.  I think she was rather surprised when the results came back and she told me that all of my lab results were "textbook perfect."  I'm 58 years old and it's been a very very long time since I could say that. 

The physical aspect of things is one side of the coin.  I think it's also exceptionally important to work on the mental and spiritual side of things.  To help with that I enrolled in a program called The Healing Journey.  It's for cancer survivors and it concentrates on teaching you things like how to control your thoughts, meditation, relaxation techniques, visualization and healing imagery. 

I chose to look on my breast cancer diagnosis as a wake-up call and so I decided to radically change my lifestyle before another "apartment building fell on me."  Does any of this guarantee that my breast cancer won't come back or metastasize?  Of course not but it does guarantee that I can enjoy every single day I have on this planet to the fullest, completely comfortable with the fact that I've made the right decision for me. 

Joan, if you would like any of the specifics about the diet and supplements and exercise/dry skin brushing/sauna protocols I'm using, just private message me and I would be more than happy to supply you with all the information you want.  I didn't want to throw it all into this post because I have amassed a ton of info and it would have turned into the world's longest post.

Joy

swimangel72

I'm convinced my breast cancer was caused by exposure to DDT between the ages of 10 and 14 while my breasts were still developing. The damage was done long ago - so I haven't changed my diet/exercise/lifestyle at all. I've always eaten a healthy diet (a life-time Weight Watchers member for 20 years) always exercised, and had a positive mental and spiritual life - yet I still got breast cancer. For me it's like shutting the barn door after the horse escaped......what's the point? For others - like Joy - I'm happy a change in lifestyle is bringing you a more improved feeling of health and happiness - but for me, it would be too little, too late, thus I went with the mastectomy and the year of Herceptin which studies have shown really works against Her2+++ cancers.

MsBliss

For myself, yes I did have brca testing and so did my sister.  We had the reflex arm of the test in addition to the standard arm.  We were both negative.  If it had been positive, I would not be opting out of chemo.  You are right about the trip neg connection too.  That said, I suspect that there is a genetic component, a brca 3 somewhere in those genes, yet to be found.

MsBliss

Joy, your ND is very smart.  To limit and not overwhelm the body is as important as what you chose to supplement.  Coriolus is a beta 1,3 glucan made from mushroom fractions.  It has been studied a lot and has been shown to help the immune system.  It is important to take a proven product of pharmaceutical grade however.  Ave is an interesting product that I still don't understand.  It has been shown to have extraordinary effects on certain types of cancers, I believe colon, prostate, and maybe breast, but I am not sure about breast.  It was recommended to me because I have a colon issue (which is why chemo is a problem), and maybe it will have the added benefit of helping my bc.   There is going to be a study on it at UCLA, but that will not happen for at least a year from now.  I am concerned about the use of any Essiac product for breast cancer.  I think it may be worth checking on studies about it's use; look it up on Sloan Kettering's www.mskcc.org.  Some studies say it can stimulate bc in E+ or E independent pathways.  Please check and let us know what your team says.

FloridaLady

Joytotheworld,

Love your post!  You covered every aspect of beating this disease. No treatment is full proof. I can see you have educated yourself on your options.

As for eating right...if everyone does the research they will see are food chain has be compromised for over fifty years.  Poor soils from too much chemicals, chemicals sprayed, genetically altered seeds, chemicals in lotions and everything else. You must consider environment you live and where you work and what you were exposed too. Much of the medical industry agrees these are the leading cause of cancer.  Family cancer history is only 12% of cancer.

Flalady

Malady

I was 66 when I was diagnosed as TN and I too chose not to do chemo.   I also feel the side effects of chemo are sometimes worse than the benefit.    I will be 2 years this October and so far all reports are good.   I have found it very difficult to get support in my decision and sometimes felt I was all alone facing this as just about everyone with triple negative takes chemo.    Just wonderful to read that I am not alone. 

MsBliss

I would love to compare our protocols...I am not able to do chemo and have chosen lifestyle changes.  Could I pm you to share info?

Malady

I would be more that willing to compare our protocols.   My e-mail is mdltops@hotmail.com

marielf

I am a Triple Neg. I have received recommendations from6  veriouse Dr. and they all made recommendations of chemo.  The 3 oncologist gave different views as to the treatment regiments.

I have been sitting on the fence not being able to make a decision until my visit from the Oncologist  this week.   I begin chem (TC  = taxolere + cytoxan) on Monday.  I will have 4 treatments.  One every 3 weeks.  I am on school vacation and will have my last treatment in September. 

I will be having IV treatments.  My trepidations was that they would put in a port and it would get  infection such as the catheter from the Mammosite radiation treatment.  Getting better but still uncomfortable with clothing and bras.

Many people with many ideas, views and oppinions.  Sometimes my head spins.  I have concluded that....

There are no right or wrong decisions.  We do the best with what we decide and know there are no guarantees in life. 

Live, Love & Laugh

FloridaLady

marieIF

I hope you find peace with your treatment options and whatever it may it kick cancer butt.

Flalady

hrf

In Oct 2004 I was dx with IDC - triple neg bc. I had lumpectomy, chemo, rads. In January 2009, I had a new dx of bc in the other breast .. ILC ES+/PR+ ... a new primary. ...had BM this time and no evidence of triple neg in original site - bone scan and CT were clear ....so almost 5 years since first dx and no evidence of triple negative.

Nanalinda

Like they say.... it is such a "crap shoot".  You just never know what will happen.  I was originally dx TN in 2006.  I fought it with everything I could... lumpectomy, chemo, rads, diet, exercise and I still got mets.  I hope your luck is better than mine.

gardenbeetle

So relieved to find this thread. I've recently been diagnosed with TNBC and have had lumpectomy, I have serious reservations about chemotherapy, despite my oncologists advice that it will give me an 8.9% greater chance of being here in 10 years time. Desperate to make the right decision as I have a 2 year old son who needs me, but after researching as much as I can in a few weeks the chemo route feels all wrong. Joy, your post sums it up really well - there are a multitude of factors that are different for every individual - I won't bore you with mine here as that would go on for 20 pages!

I haven't made my final decision yet - my oncologist despite her recommendations is understanding and flexible and has offered to arrange radiotherapy first, giving me more time to think about the chemo. In the meantime I am researching alternative/complementary treatments, one thing I will do no matter what is change my lifestyle. I found David Servan-Schrieber's book very inspiring: http://www.amazon.com/Anticancer-New-Life-David-Servan-Schreiber/dp/0670020346 

Anyway, just to say that all your posts have helped - I don't feel so alone knowing there are others who have refused chemo - it's quite hard to find support when most people seem to assume you should follow your doctors advice and that they always know best. But I know from experience this isn't always true.

chumfry

When I was first diagnosed in 2005, my onc said I wouldn't need chemo if my tumor was under 1 cm. (which it wasn't, sad to say) So I would think that the ladies who have small tumors (around 1 cm) are really on the borderline in terms of risks vs benefits. So I can see the rationale in opting out of chemo, even though I didn't make that choice myself.

--CindyMN

apple

nobody wants to do chemo. i'd be so afraid to not follow the protocol established by research.. my sister in law insisted that i do chemo (as if i had a choice - i am cancer challenged to put if obliquely.  She had refused chemo.  4 years later it was stage IV and she passed away this year.

 lifestyle changes are good for our health and well being.. i am not so sure those choices can destroy cancer cells

I pray you carefully consider your decision thoroughly especially.

sorry to be debbiedowner.

jbdragonfly

Everybody does have to make their own choice and be comfortable with it.  I also like the book Anticancer and am starting to follow its suggestions. (Dr. Schreiber also did take conventional treatments.)  But, I did do chemo even though I had a relatively small tumor and no node involvement.  I actually did both AC and T even though doing T could be considered a bit more aggressive in my circumstances.

I think I am lucky, because chemo was not anywhere near as difficult as I feared.  I worked nearly full time by taking off 2 days every other week...Thursday was chemo and Friday was off.  It worked for me. It wasn't a cakewalk, but even though I turned 59 during the process I could handle the fatigue.  I also kept up some exercise during treatment which I think really helped. I needed to feel that I had done everything I could to get the cancer out of my body.  I knew the risks involved with the treatments because I am a compulsive researcher and I read every study and paper I could find. That stuff is worse than reading prescription labels about side effects...grin.

Here's hoping you feel good about whatever decision you make. JB

MsBliss

It is a little unfair for you to mention your sister in law refusing chemo and ending up a terminal case without the details of her cancer. 

If she was early stage, no evidence of spread and estrogen positive then that is quite different than triple negative with indications of spread.

Skipping chemo is not a wise decision if there are unfavorable issues.  Most of us who skip chemo are either unable for secondary health reasons, like myself, or don't really gain any real points for the downside of chemo.

hrf

I am also reading Dr. Shreiber's book and while I think he makes a lot of sense, he does say that once cancer is dx, it is wise to take advantage of modern medicine. He advocates the lifestyle choices to prevent cancer or to minimize recurrence.....but he never suggests that lifestyle will cure cancer. His book is one of the best I've seen on this topic.