Has anyone refused chemotherapy?

Hey Lynette,

I guess nearly all of us have had to face this one. I don't know about you but the only knowledge I had (or, more likely, the only notice I seemed to take!) was that chemo just about killed people. It is incredibly debilitating for some cancers, but with BC it's really not that bad. I'm having my last poisoning on Sept 28 and feel like the Warrior Princess I am! My regime (3 X FEC followed by 3 X TX, each 3 weeks apart) was pretty aggressive. The TX was 100mgs (mls?), and apparently 75 is usual. I too was worried about my heart because I had some funny business in '06, but they check all of this out thoroughly before they give the chemo go-ahead. 

Percentages can do your head in. My thinking was 20% was too close to 1-in-4 for my liking, while 8% seemed like a very wide miss! All part of talking myself into it, and I'm glad I did simply because, in the end, I know myself so well and I know I would stress and question myself every day re 'giving it my best shot'. Having said that, I'll be thinking just as hard, but very differently about hormone therapy. I've had enough of chemicals, and am considering the extreme good health route. Now that will be harder still!!

All the very best with your decision. XX Kerry 

I did not do chemo.  I already have ankylosing spondylitis which is a form of arthritis.  I had taken methotrexate (in a smaller dosage than they would give someone for cancer) which put my arthritis in remission, but does suppress the immune system.  I had a feeling that this is why I got cancer in the first place.  I have a grade 3  stage l breast cancer which is her2 positive, so very agressive.  I finally found a doctor who would treat me with herceptin and tamoxifen, it did take me a couple of months to get all  of this into place, but I don't know that chemo is the answer for everyone.  My ejection fraction was too low for me to even get the suggested regiment which was adriamyacin, cytoxan and taxol.  Just keep reading as much as you can, and talk to as many survivors as you can.  Julie

Lynette,

I made the same decision just last week.  Once I had decided, I felt much better about it.

I think that we are all scared before it starts, part of it being the unknown.  But we will get through it, like so many others have.  And then we will know that we have done everything we could possible do for ourselves.  

I assume that we will both be in the Sept. 08 group?   We'll do it together.  I think we will both relax after the treatments start, and then we'll just get through it.  Like everything else we've been through.  

I'll have you in my thoughts.

Chris 

That would be me.  I refused it after it being recommended by two oncologists, two surgeons, and a radiation oncologist.   

My first needle biopsy breast surgeon said "you'll have to do chemo, this is life or death."  Went to another surgeon for the actual tumor resection and SNB.  He also said "do chemo, just consider the next six months are going to suck." 

Went to an oncologist.  He said Cytoxan and Taxotere for 4 rounds.  Went to another oncologist.  He said the same thing. The first radiation oncologist I saw also said do chemo, and that I could quit half way through the chemo should I chose.

I used the John Hopkins site and wrote my story to Lillie in an email after the first recommendation and she said get a 2nd opinion, after that one came back "do chemo," she said get a third opinion and insist on Oncotype DX study which had not been offered.  I requested it and it was still not done. Finally, Oncotype Dx was done and it returned at "15."  At only that point did my oncologist say, "you do not need to do chemo."

 I was 49 at dx but tumor was present in my mammogram 2-1/2 years prior (overlooked by the staff and I was so busy with life, I forgot all about mammograms).  So, I considered this may be why they medical staff were so adamant about chemo.

 I came to this site and posted my dilemma and the responses were the same as Lillie's, that chemo would be overkill with ER positive, node negative, G1 and stage one.   Had I not be compromised emotionally due to the loss of my mother six months prior and the tragic death of my brother one month prior, I probably would have just accepted the first doc's opinion and did it .

 Thank you Al Gore for the internet and thank you brave women who come here and help those of us who come onto this board and John Hopkin's as newbies.  I am forever grateful.

Hi, Lynette,

So sorry you've had to go through such a difficult decision, but I believe you made the right choice, due to the size of your tumor and most importantly , the fact that your cancer invaded a lymph gland.

I chose NOT to do chemo, even though my Oncotype score was 30, which is high in the intermediate scale (Genomics), a kind of gray area where the effectiveness of chemo in preventing recurrence is not yet fully known. (I have a 20% chance of recurrence.) However, my diagnosis was different than yours:IDC (locally invasive from duct) <1cm,Stage1B,Grade 2,0/2 nodes,ER+,PR+,HER2-, 2 cm clear margins.

I had several reasons not to go the chemo route:My husband, son and other family members agree with my decision:

First, I felt, like LynnInCalif, that chemo was overkill in my case.  Both my surgeon and my radiation oncologist seemed very noncommital about my doing chemo, saying only,"You'll have to ask Dr.....(the oncologist) about that." I suppose they couldn't say,"Don't",out of professional courtesy. The closest the surgeon would come to saying,"Don't do it" is replying that no doctor can make you do anything. Think my oncologist was for chemo, though she said she would support me in my decision since she felt confident we were fully informed, that the patient had to make the decision that was right for them. She added that she believed I had a very good prognosis, even without chemo.

My second concern was how my age, 61, might affect my having long-term consequences on my health, such as neuropathy, secondary cancer (leukemia), and heart damage. I am willing to take a chance in that I might well be in that 80% that have no recurrence. Were I younger or pre- or perimenapausal or had my Oncotype score been in the high range, I would most likely have decided differently. Also, I completed radiation therapy, 33 treatments, eight of them boosts to the area where my tumor was. This is supposed to reduce the risk from 40% to about 5% risk of recurrence, the radiation oncologist said. Radiation was time-consuming, but certainly much, much easier than chemo, which affects your entire body.

I began my hormone therapy -Arimidex- about six days ago and am doing fairly okay so far, except for being really stiff in the mornings. I'm not thrilled, but plan to continue it unless muscle and joint pain become intolerable. Luckily, my oncologist encouraged me to call her with any problems I might have with this drug.

I feel I've made the right decision for me. Still, daly city and LynninCalif are right. Statistics can drive you crazy and I do occasionally have self-doubt about my choice. Still, with my cancer being discovered and removed at such an early stage, plus the radiation,I really feel I am cancer-free.Thank goodness for mammograms, which make very early diagnoses possible. Due to the location and size of my tumor, neither my regular physician nor I would have discovered it until it was much larger!

God bless all of you out there facing tough decisions and tough treatments.

LizinKS

 dblinch

 i to  am supose to do chemo 4 rounds & herceptin 1 weekly for a year. no one told me there might be a chance that i would have to do all this,  after my rght mast , i had  %99 , now after path with all the treatments they give me 85%, i don't know if i handle it either. i have a 7 yr old ,4 yr old,i cry everyday , i can't sleep, and i'm  on anti depressons. i feel it's a no win situation, and what about all the up coming holidays. plus the changes of me seeing my kids grow up seem so dim now. i've been talking to consulers too. is there any way of handle all this!!!!!!

dblinch - ER/PR neg, grade 3 res ponds really well to chemo, and having chemo also improves the way herceptrin works. Herceptrin is changing the whole world of cancer treatment for those of you who are Her+.

With your stage and your nodes, you are quite likely to never see a recurrence, if you have treatment.

With your diagnosis, chemo is really the best treatment. The good part is, you get through this sucky year, and the next year, and you are unlikely to have a recurrence. Us ER+ girls don't have the same guarantee.

I'm sorry you have to do this - it is SO hard! Just keep asking for help, and we'll be here.

I was diagnosed 5 years ago with IDC with one positive lymph node which made me stage 2B.  I refused chemo as my onc told me that only 8-10% of people benefit from the chemo  BUT the medical community does not know who that 8% is, thus they advise to do it in case you are in that percentile.  Personally for myself, with percentages like that, I opted out and I am still here and clean.  I did do surgery, radiation ,Tamoxifen and Aromasin.  The Aromasin is a whole other story as that did my body quite a bit of damage that is now irreversible but that is my porblem to deal with.    But, yes, there are some of us out there who refuse chemo and are still going strong 5+ years later.  Good luck to you as this is a very personal decision.  As an addendum, I was in my 40's when diagnosed.

RCL -- Are you ER, PR, HER2  positive or negative?

I am ER/PR/HER2 negative - Triple Negative - and also considering not doing chemotherapy.  At my meeting with oncologist yesterday, I was given 18% risk of recurrence.  In other words, 82% of NOT having a recurrence.   I am leaning towards not having chemo.  18% versus the side effects while in treatment and long-term side effects doesn't equate for me.

I have IDC, Stage 1, 0/1 lymph nodes (SNB), 1.1 cm, Grade 3 (Triple Negative).  I had a lumpectomy (8/20/08) and re-excision as the margins were not large enough (9/8/08).

I had 6 rounds of Taxotere and Cytoxan. It was not so bad. I even went on a vacation to Vietnam between the rounds of chemo.

Woo Hoo -

That's a tough diagnosis. I don't know that I could do what you are talking about. Ask your doctors about adjuvantonline, so you can see what your chances of recurrence are, with various combinations of treatment options.

Have you reviewed the informational pages on this site? I found them very helpful in explaining what was going on.

Good luck

Renee, what did you decide to do.  Chemo or no?  How are you today?  JaniceT

Had DMX, refused chemo, radiation and hormone therapy. My oncotype DX score was a 9 and although Onc was pushing it I refused all 3. I may regret it later but I feel I did the right thing for me at this time.

My oncotype dx score was 30. I am refusing Chemo and hormone therapy as a preventive for recurrence and will be working to build up my immune system and changing my way of eating. My onco says I am technically cancer free so to me the benefits of chemo (only 7%) does not outweigh the side effects.

My first surgeon recommended neoadjuvant chemo before the mx and sent me to an onco who rx'ed ACT. She over looked my poor health, diabetes and MS and wrote "In good health" on her report. Really. She told me to take care of my dental issues before we can start. I left her office ready to go with it and even shopped for a wig. Never went to the dentist and it gave me time to research and think about it. Well I don't believe I would have survived the harsh, toxic tx so I found another surgeon who was wonderful and didn't talk chemo til after he did a partial mx. My next onco recommended CMF but by that time my decision for NO chemo was done. She did the oncotype test, for peace of mind and it came back a 28, intermediate. She rx'ed arimidex, said it was more important than the chemo....NO THANX.

I am very comfortable with my decisions. I am improving my diet, taking sups, and under the care of a chinese herbalist. ALL NON TOXIC. And my heart, teeth, and hormones are in tact.