I'm considering refusing chemo

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2013

    KI67 should be on your biopsy..... I may be explaining it wrong, but it's what percentage of the tumor is cancer cells, I have heard it also explained as a miotic rate.

    Usually low KI67 equals low oncotyope but not always...I had a very low Ki and a medium oncotype. I think when they are looking at women with low oncotypes, one factor that makes chemo more likely is a highter Ki 67.

    Since I was on the bubble I had to look at everything.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited January 2013

    She looked at my oncotype report and I showed her where it said I would gain 0% benefit from chemo and she said she felt like I absolutely still need it because of my age.

    Wow and yikes, amyi - I wouldn't trust a doc that ignored evidence-based medicine to insist on a treatment with potentially dangerous SEs. I am glad you feel at peace about your decision. American medicine has a long way to go before it moves to responding to science rather than habit, financial gain or inertia - or whatever it is that motivated that doctor.

  • Lee7
    Lee7 Member Posts: 657
    edited January 2013

    Athena I agree.

    Scary, to hear an onc would ignore the 0% benefit and still insist on chemo. My first onc used 50 years old as a dividing line between young and old to determine treatment. I got the "you're young" line, you have to have chemo.  Rather than a specific age like 50, the divider should be pre menopause vs postmenopause. The chemo benefit for a pre -menopausal ER+ woman may be the way it shuts down estrogen production in the ovaries.  A non chemo option can be to have your ovaries out.

    amyi, I think you you said your onc didn't give you any other options.  When that happened to me I went for a second  opinion at a whole different treatment center, not connected to the first.  I then switched all my care to them.  I needed to have an onc/team that was going to listen to me and work with me and my particular case.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2013

    Here's a graph comparing node - & node+. I think it may pertain to only sentinal nodes though. http://www.oncotypedx.com/en-US/Breast/HealthcareProfessionalsInvasive/ClinicalSummary/ExpandedUse

  • amyi
    amyi Member Posts: 22
    edited January 2013

    Lee, I did actually ask to have my ovaries out and she said it wouldn't benefit me bc I'm brca negative. That is what I found is more commonly used in Europe/Canada in place of chemo for estrogen positive tumors so I plan to keep asking for it.



    Thanks for the graph coraleliz! That was very helpful :-)



    Can anyone tell me how long after MX you typically have to wait before starting rads? I have a consult with the RO Wed but just curious in the meantime :-)

  • icey
    icey Member Posts: 141
    edited February 2013

    I think all onc alway recommend chemo no matter what. I am one that refused chemo as I thought the risks out weighted the benifits. So far it has worked out for me. But it is a hard choice to make. I think my ocotype was 18 and I would benifit 4 percent. That was enough to convice me to have chemo.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2013

    All oncs always recommend chemo no matter what? That is simply not true.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    I concur with Caryn. Icey, you cannot make such generalizations that ALL doctors recommend chemo. None of the three medical oncologists that I consulted recommended chemo. Furthermore, with your Oncotype DX score of 18, which falls on the cusp of the dreaded intermediate range, there still isn't enough evidence to determine if the risks of chemo outweigh the benefits. Once the TailorX trial is completed we will have more guidance with regard to our intermediate score sisters.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited February 2013

    Amyl, I threw everthing at my cancer because I knew I would have terrible regret if I had a recurrence.  If I do have a recurrence, I know I did everything I could.

    When I am trying to make a decision, it has helped me to focus on several scenarios in a situation.  You are wisely gathering information and asking for help and everything to make sure your decision works for you.  I would suggest that you also consider how you would feel if you had a recurrence, not having done chemo?  Would you second-guess your original decision?

    Wish a peaceful resolution for you.  God bless.

  • misshopeful
    misshopeful Member Posts: 17
    edited February 2013

    I'm so glad i found this forum. I was diagnosed last january and had BMX last feb 7. Stage 1 ,margins are clear and no node involvement. I had immed reconstruction with expanders. I met with my oncologist today to discuss my treatment options... My oncotype score is 20 which is intermediate. The decision is up to me whether to have chemo or not and just tamoxifen for 10 years. My oncologist said he strongly does not recommend chemo, he said it would lower my risk by 2 %.I am an oncology nurse who gives chemo to cancer patients but if you are in a situation like this it's really hard to make a decision. My husband is more on to NO CHEMO....I am confused bec I have read somewhere in this forum that chemo will reduce the risk by 3-4%. Which is which since my MO said only 2%....I am 37 y.o. and has 2 kids, I wanna be around for them...but I dont want to overtreat myself, I might not really need chemo but I dont want to blame myself for not getting chemo if "GOD FORBIDS", the cancer recurs. This is a very hard decision to make. I have seen the side effects of chemo from my patients and its not easy....I am not concerned about losing my hair. I just need help making the right decision.... CHEMO OR NO CHEMO,JUST TAMOXIFEN FOR 10 YEARS. I need inputs please.

  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2013

    Wow misshopeful so the Oncotype score of 20 was the trigger for chemo/or not? I had the test done too because I have Stage now 2(micromet in SN) and Grade 1 bc. BS said the micromet would get me chemo. Onc wasnt sure so she ordered the test and my score came back 11. Game over for treatment. ONC said Rads and then Arimidex and now Tamoxifen. Rads werent bad at all but I was resistant to chemo and not because of just the hair loss but the chemicals in your body. Everything has a risk and SEs but Rads was a piece of cake compared to chemo and I had 33 treatments. I think in your case I would consult another doctor just to be suer. If you only gain 2% that doesnt seem like a lot but then again we are all fighting this disease with everything we have. We all know there are no guarantees. The one constant is you have to do what is best for you. There are no right or wrong answers where your life is concerned. Just make sure when you do decide you dont second guess yourself or look back. Good luck. diane

  • amyi
    amyi Member Posts: 22
    edited March 2013

    Hi Misshopeful, sorry I just saw your post! Are you estrogen positive? It was an extremely hard and confusing decision for me but my radiation oncologist told me having my ovaries removed in combo with tamoxifen, followed by radiation is the next best treatment to chemo based on my diagnosis so that's the route I've decided to take. It's a personal decision for everyone but the important thing is to weigh the pros and cons and give it lots of prayer till you feel completely at peace with a choice. I'm also 37 but no children so I'm just having to consider myself and I know in your case its a tougher choice. Please keep us posted and I will be praying for you!!

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    amyi... you've been misinformed.  I am Canadian, was a pre-menopausal and strongly ER+, Stage 2, Grade 2 IDC and had four months of dose-dense chemotherapy followed by radiation and tamoxifen.  The chemo recommendation was made because I was 50 years old and had a tumor slightly over 2 centimetres.  An oophrectomy was not recommended because of a strong family history of heart disease and stroke. 

    Five other women that I met during the course of treatment were, also, ER+, varied in stage/grade from 1 to 3 and had chemotherapy followed by either tamoxifen or an AI.  Not one of them was recommended for an oophrectomy.

  • tori39
    tori39 Member Posts: 26
    edited April 2013

    Hi. I was diagnosed with stage 2 IDC three weeks ago today. I have yet to do any surgery or treatments. My MRI and PET/CT scans showed no swelling of my lymph nodes. We are now waiting on the results of my genetics test to determine if I'd have a double mastectomy (sorry I haven't caught up on the abbreviations yet) or not. If it's negative, the MO is suggesting that I go through half of the chemo first before surgery (to shrink the tumor) and then do lumpectomy with rads, then the last cycles of chemo. Now I'm glad I read this thread because I'd like to have that oncotype Dx test done and see if I'd benefit from chemo or not. Neither the oncologist nor the surgeons I consulted suggested this test done, and they both agree that I should do chemo first before surgery. I was so convinced that chemo was the only option. But now that I see I could be a candidate for this test, would you know if is this something I can insist on? I am still flip flopping between lumpectomy and mastectomy, and it's hard for me to decide on any thing right now. But I'd like to know if I'd have the option to avoid chemo even if it means more agonizing decision-making (I have only today finally convinced myself that a port would be better than not having one bec I though chemo is unavoidable).

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2013

    People who choose to ignore a doctor's advice for chemo shouldn't be made to feel they are missing out on important treatment. I'm not trying to criticize people who choose chemo, only trying to show that chemo doesn't prevent recurrence or prolong survival in every woman or even most women. Chemo is harmful to the body even though it may kill or temporarily wipe out the cancer. It's an agonizing decision. I have read many comments from women who say they want to do everything they can to fight the cancer. Just take a look at these forums related to recurrence and Stage IV and see how many women have gone through chemo (and mastectomies) yet had the cancer return. That doesn't mean those women necessarily regret the chemo. It's possible that it prolonged their life. But it's possible it didn't help. I refused chemo/ovary removal at Stage I, even though docs would not stop pressuring me about it. I was concerned about long lasting ill effects. I have no regrets, even with a recurrence almost 4 years later. Chemo is there if I need it LATER. For now, gentler therapies are keeping my hormone-positive cancer from progressing. I still have my breasts and my recurrence wasn't even in my breasts which are disease free. Making choices is tough when you are first diagnosed. I'm not impressed by any treatment that appears to delay recurrence or progression by only months or even weeks. Breast cancer recurrence is still a medical mystery and even with the harshest of treatment, even when nodes are negative, cancer returns. That's something NONE of my oncologists or surgeons brought up when they were insisting I needed chemo.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2013

    TarheelMichelle...I am sorry to hear that you are now facing the challenges of having a DISTANT recurrence.  I do not wish to judge whether or not you chose the right course of treatment when you were initially diagnosed.  Everyone has to make the decision that is best for themselves.  And you are correct, with breast cancer, no one knows who will recur.

    However, I wish to clarify a few points that you make in the event that new sisters come to this thread and read your comments.

    You mention, your recurrence is NOT in your breasts.  Recurrence in the breast is considered "local" recurrence and is NOT part of the percentage equation when considering chemotherapy.  Instead, when physicians discuss with a patient whether or not they advise chemotherapy, they give percentages based on DISTANT recurrence, that is, metastasis, NOT "local" recurrence.  While it is true that the true absolute benefit of doing chemotherapy MIGHT be a small percentage, in terms of RELATIVE benefit, the percentage of benefit MAY be VERY GREAT.  Without a doubt, chemotherapy does sometimes leave patients with life long quality of life issues.  However, those QOL issues may be far better to deal with than ultimately dealing with organ metastases. 

    No doubt about it, no one knows with certainty who will have a distant recurrence whether they have chemo or not.  But for many patients, keeping in mind there are 3 million Americans living with a breast cancer diagnosis, it is likely that chemo has kept many of those patients from recurring.

    On a final note, there are many women who would not do chemotherapy unless their absolute percentage of benefit is a double digit number, while some would choose chemo for just a 1% gain.  It really comes down to an individual's risk tolerance for DISTANT recurrence. 

    I wish you well.

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited April 2013

    Those are good points, voracious reader, and I thank you for gently clarifying to others that I wasn't using precise terminology regarding mets. As a newbie here, but not a cancer newbie, I feel the urge to share my choice not to do chemo at Stage I. Even though I now have mets, I chose the most sensible Stage I treatment for me and have no regrets now. I knew that mets later was a possibility, even with chemo, and I'm a lot more at peace having not had chemo, than if I had gone through it. Seems like some newly diagnosed and newly overwhelmed people believe that unless they choose mastectomy or chemo, they aren't doing everything possible to prevent recurrence. And that's not so. Chemo is a wise choice for some but not everyone. Wishing you well, too. :-)

  • Zorina
    Zorina Member Posts: 103
    edited April 2013

    I had a tumor <1 cm 100% ER/PR positive, but they found cancer in the Sentinel nodes (3/6) and after a second surgery found 2/14 axillary nodes positive. The margins on the tumor were extremely clear, so I wish to heck I could understand how a grade 3, minuscule tumor spewed cancer cells so easily! 

    The MO explained it this way:The lymph system is like an interstate that runs the length of your body. My cancer had hitched a ride onto the interstate which means those nasty cells could be anywhere in my body. I opted for chemo.   

    Continue to do your research and get medical options, but don't let the side effects alone guide your decision. Consider what you want as a final outcome from your treatment...whatever it may be. 

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited April 2013

    TarheelMichelle, good for you, and you are spot on in your analysis.

  • gonegirl
    gonegirl Member Posts: 1,871
    edited April 2013

    Treatment is a personal choice and the best way I found to decide was to do my research. Pubmed.gov is a database of worldwide medical literature covering alternative and traditional treatment research. It's medical literature so not written in lay terms, but still it's an invaluable resource. When well-meaning folks sent me info on various treatments, I looked them up here.



    Also, every cancer is different in every person, it depends on the biology of the tumor and the person. My stage iv HER2+ liver mets have responded well to Taxol and Herceptin. Others have not been so lucky. So what works for one person, may not work for another. I look at statistical significance, i.e. what has worked for the majority when making decisions, and then I pray.



    Quality of life is a big issue as well. At first Adriamycin was suggested for me, but my family has a history of heart problems. Ironically, my new life goal is to die of a heart attack, rather than a long, lingering death from cancer. We'll see what happens. But a big old life-ending heart attack would be a good thing in my book. I don't want it now, but I sure as hell am hoping for it later. Dying of cancer sucks. Bad.

    Forgot to mention. My breast cancer spread via blood stream and I was stage iv right out the door, no recurrence. And, yes, I did get regular mammograms. Just my bad luck.

  • misshopeful
    misshopeful Member Posts: 17
    edited April 2013

    Its a difficult decision on what treatment to choose.Its a very personal choice and it depends on a person's situation. I am an oncology nurse. I know how hard it is to go through chemo, i see it almost everyday. My oncotype dx score fell under the gray area, it was a 20. It took 3 weeks for me to decide on what treatment to choose. I opted for chemo.I already had my first cycle last march 27 and im getting the 2nd one this wednesday. It was not an easy decision. The factors i condidered are my age, tumor grade, i had two tumors 1.3 cm and 1.4 cm...there is no wrong decision. Its a matter of a decision that will give you peace of mind. A decision that will make you sleep at night. Yes there are possible long term sideeffects but i dont want to think of the things that im not even sure are going to happen... I just want to deal with my cancer now, i will deal with whatever possible problems when it comes,hopefully not. I dont want to live each day thinking or asking "what if".... Id rather deal with the sideeffects of chemo that are manageable than dealing with a distant recurrence later on, maybe at least o lessened the chance of a recurrence. Only god knows....wish us all the best! God Bless.

  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2013

    Also if you are hormone pos 100 percent then hormone blockers act as systemic treatment too and you can take complementary treatments to help with immune boosting and destroying cancer cells or preventing angiogenesis

  • annabananas
    annabananas Member Posts: 23
    edited April 2014

    You need to find out the biology of your tumor. What is the K167 marker? Important because this indicates the rate of proliferation of breast cancer cells.I have invasive ductal carcinoma of one breast.  My onco type score was very low at 7, my K167 marker very low, and I was 99% estrogen receptor positive. I have cancer in 3 sentinel lymph nodes but no cancer in my axillary lymph nodes. I also had a negative total body PET/ Cat scan.I had a second opinion from a UCLA oncologist who told me that chemo would only increase my survival chance by 5%. So,  I am choosing to take, on the advice of the MO,  an aromatase inhibitor and maybe at my own research and my naturopathic doctor a supplement called DIM, a natural estrogen blocking agent. I am on the fence about radiation right now based on a recent study by UCLA about breast cancer stem cells being produced by radiation which become resistant to treatment.  The worse enemy is fear and our best friend is calmness and knowledge.

  • Candicerene1
    Candicerene1 Member Posts: 1
    edited January 2017

    Amy, did you continue on without chemo/radiation? How did you fare? I had a dbl mast.on Nov 29, '16. Am cancer free but now they want to give me both. I'm opting to say No and use alternatives. Did you?


  • Bright55
    Bright55 Member Posts: 176
    edited January 2017

    Hi we are very lucky that most of us with bc and mbc live in countries where the best medical treatments are available. Often after surgery further testing can indicate a more aggressive form

    What type is your bc ?

    Remember your oncologist is part of a team that meets to recommend the best treatment needed

    treatments are now tailored for the individual tumor behaviour.

    you can always ask for a second opinion from another oncologist..if you can afford this

  • dtad
    dtad Member Posts: 2,323
    edited January 2017

    amy1...sorry you are in this situation. We all had to make tough decisions. My advice is to get another opinion from a MO at a major university teaching hospital. Right now you only really have one since the breast surgeon is not an expert on chemo. Just remember that once you have gathered all the information you need, it is ultimately your decision. Good luck and keep us posted.

  • Kicks
    Kicks Member Posts: 4,131
    edited January 2017

    It is very unlikely that amyi will respond to your questions/comments. This is an almost 4 year old inactive thread (except for 1 post in April 2014) and amyi has not even visited BCO since March 31, 2013.

  • Debbs74
    Debbs74 Member Posts: 20
    edited June 2017

    I was diagnosed in early march, found a lump and had a mammogram, ultrasound. Went to breast surgeon and had a core biopsy, it was cancer, had lumpectomy then a week later breast surgeon said when he was putting the dye in to see if nodes were good it stopped and another separate primary tumor he found.So went for a mastectomy. Pathlogy came back triple negative 2.7 cm. and a 1 cm her2 no node involved, went to fox chase in Philadelphia to see how to treat, they said with no chemo 80% chance it won't come back, but to take chemo that number will come up to 90%.should I take the poison that can cause other cancers like as in Robin Roberts case of abc news she got a a rare bone blood marrow cacer from her treatment.or what about heart problems, cancer of the blood you can development! What do I do 10% difference?

  • pupmom
    pupmom Member Posts: 5,068
    edited June 2017

    Chemo is the only line of defense for triple negative. Also, couldn't tell if you are Her+ or not. If so, you would need Herceptin plus chemo. If it were me, I would do the chemo, and treat the cancer I knew I had, rather than an imaginary one, that is not even very likely to occur.

  • Kat1984
    Kat1984 Member Posts: 47
    edited June 2017

    hi debs this is a very old thread but wanted to chime in to say welcome and take the chemo! Triple negative tumours are very aggressive and chemo/rads are our only treatment options. It can be sneaky and return so best to have the chemo to zap any stray cancer cells. Ultimately it's your decision but make it an educated one, do research and get a 2nd opinion (and 3rd!). I had 16 rounds of chemo for TN with a 2.2cm tumour. I completed treatment 1 year ago and am feeling great! Best of luck to you!

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