Has anyone refused chemotherapy?

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  • SassyWell
    SassyWell Member Posts: 4
    edited July 2013

    I was diagnosed at 43 with IDC, ER/PR/Her2+. This was almost six months ago. After six biopsies, three MRI's and a PET, I chose to have a bilateral NSM with immediate reconstruction in May. After numerous discussions with my Med/Onc, and repeatedly questioning the accuracy of my Her+2 read, we decided to have my tumor's genomic profile via Mammaprint. My final path came back IDC, 1.7cm, grade 2, 0/6 lymph nodes, low mitotic index, no lymphvascular invasion and strong ER. And although Her2+ cancer evidenced based treatment is chemotherapy plus Herceptin, I chose to refuse chemotherapy due to my distal recurrence score being 10% and 5% with hormone therapy based on the Mammaprint. My Med/Onc first offered me TCH, then Taxol&Herceptin and then just Herceptin without chemotherapy which I agreed to. I'll be having my fourth Herceptin treatment this week and it has been effortless. I've also been on Tamoxifen for six weeks and feel fine. I took two weeks off work after surgery and never let the disease define me. I decided to be in control and stay informed. Six months ago everyone told me my life would be hell for a year or two. Not so, I feel great, look great and I am happy with my choices. We cannot forget as patients we have a right to shared decision making. Best of luck to all the strong women who refuse to let this define them. It will only make us stronger.

  • GrammyR
    GrammyR Member Posts: 702
    edited August 2013

    I applaud you sticking to your own decision. I was blindly led by Onc and had 3 chemo drugs for 6 months including Taxol which left me w/severe neuropathy. I had the total surgery and lymph noded removals. Hormone blockers for 18 months before I quit. It now has reurned after 7 years so kinda feel that going thur that chemo was not the way to have gone. I am pretty disbled now and suffered lots of pain- during and after. Before I held 2 jobs and bicycled three times a week. I can do none of that for about 5 years now. I am back on Tamoxifen so sure hope it stopr something. I am also going to be more religious about excluding hormones and dairy out as much as possible.

  • Loral
    Loral Member Posts: 932
    edited August 2013

    I turned down everything except Tamoxifen.

  • GrammyR
    GrammyR Member Posts: 702
    edited October 2013


    Loral - I do not think I was misdiagnosed but I feel that its all a toss up as to what will stop this terrible disease n its track yet preserve your quality of life. I stopped Tamoxifen most recently after 1 month after some horrible nausea and loss appetite and aggressive behavior. I was getting radiation at the same time so it may have made things worse.It was almost cortisone can do. Now I have to decide about Zoladex injections. Not sure if I can do it or even if it would stop anything. Everyone is different.

  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    I wonder if opinions about this are different with triple negative patients where chemo is really insisted on. I am willing to try chemo but am now trying to convince myself that it isn't necessary because I may miss the deadline due to surgery complications. The onc won't give chemo more than 3 months post op and I have a wound that will very likely not be healed by then. In some respects I am relieved to not have to make the decision but am also afraid because triple negs are really pushed to get it.


    It's interesting to to read all of the perspectives

  • GrammyR
    GrammyR Member Posts: 702
    edited October 2013


    wren- I think that may be too risky waiting greater than 3 months after surgery. How come they messed up your surgery , that's too bad. My BC Surgical Center - one of the best in Fl could not offer to even see me to determine which chemo to use 3 months. So I got advise from a doctor group I worked with who got me into another very reputable group within 2 months. Still I was upset that even 2 month was too long to wait and now that my ERpos BC is back who knows if I had gotten treated sooner. I also had no RADs at the time either - perhaps should have..I strongly would urge you to check out all your options before jumping into first available date. Anyway I wish you all the best for a speedy recovery and smooth treatment plan.

  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    Thanks Grammy. The 3 months is almost up. My surgeon was neglectful in my opinion. I have a new one now who monitors my current wound. I also got a new family doctor today who was not too pleased with how things have gone. I have a feeling much of it was because I have an anxiety disorder and when I brought up concerns they thought I was just being anxious. It was just one thing after another by a couple of different people. I will take them on when I get my strength back.


    thanks for your support.

  • GrammyR
    GrammyR Member Posts: 702
    edited October 2013

    wrenn- Your mention of being rushed or being deemed " anxious "  sounded a bell in my case too. I was told to follow up w/ my primary physician but when I saw her last week , I felt rushed as she had the nurse come in and announce next patient ready. I had about 4 things to be addressed but only got two things taken care of. Why on earth healthcare in the US is costing more everyday but services get less. We have to fight to keep on top of our own ailments. Any way I am sending a hug to be with you along the way to the best recovery possible.

  • Debbs74
    Debbs74 Member Posts: 20
    edited June 2017

    they told me the same I had tnbc 2.7 cm and a her2 nu 1 cm. In one breast.had mastectomy no node s involved, I would have a 80% chance that it won't come back with no chemo, with chemo 90% 10% difference, what should I do, don't want to risk taking that poison and health complications down the road!


  • grandmanet7
    grandmanet7 Member Posts: 3
    edited June 2017

    I was diagnosed 25 years ago at age 34. I had a lumpectomy, chemo (the side effects were terrible) and radiation. At the end of my treatments I find out I was pregnant. They said if I didn't terminate the pregnancy the cancer would recur because of the high level of hormones in pregnancy. I didn't terminate. 5 years after the first time I was once again diagnosed with breast cancer. I had a mastectomy, and chemo. They didn't give me an estrogen blocker. Now, 20 years later I have been diagnosed with breast cancer that has metastasized to my lungs and bones. I don't know what would have happened if I hadn't had chemo. It's all so individual. At the time I had 8 children to consider and I felt I needed to fight and was willing to do anything necessary to beat it. I'm grateful for the 20 years I've been cancer free but I'm terminal now. I will never do chemo again. I'm on Ibrance and Letrozole that should slow the progression but when it stops working I won't seek other chemo treatments. When all is said and done it's your life and only you have the right to decide what is best for you. I hope you find peace with whatever you decide and live each day to the fullest.

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 308
    edited June 2017

    I find myself in a similar situation of should I or shouldn't I. I've decided to at least give chemo a try this Friday. I asked my oncologist what would happen if the side effects were bad. Her response was they would adjust the dosage accordingly. I'm also worried about long term side effects. I have a friend who went through chemo and radiation when she was 35. It returned in her fifties. She really hasn't had too many long term side effects other than thyroid but she is still going strong as ever. I never thought I'd get BC. I figured I would beat those odds but here I am. Now hoping that my odds of BC not returning are going to be better with chemo, radiation and hormone therapy. One of the gals in my Healing Connections group took the natural path way but said she would never do that again as it didn't work for her. It only made her BC worse. Who knows really why some therapies work and some don't. It's not really anything we've done or haven't done. It's just who we are. I'm scared to death of the side effects but also want to live longer. If six months of feeling crappy gives me 20 more years then I'll take that chance.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2017

    I turned down chemo, my recurrence risk was quoted as 23% with tamoxifen. But I had one ilc and one idc tumor with lobular features, I took AI drugs for 4 years. I didn't have node involvement my grade was 2, er positive pr negative. My oncologist was disappointed I didn't choose chemo. I was not willing to do it.

  • josma5
    josma5 Member Posts: 1
    edited June 2017

    I am wondering if anyone else has refused chemotherapy and how it has turned out for you.

    I had a mastectomy three weeks ago. I'm going through reconstruction. My scans are clear, but 5 nodes were involved at the time of surgery. No genetic link, no family history, my cancer was fed 100% by my hormones.

    The general recommendation (push) from my Oncologist is chemo, radiation, then Tamoxifen. At first I considered simply going ahead since it was such a push to do all three. But, then my gut instinct was to dig a little deeper, look at the research, and see how others have fared that chose not to do the chemo route.

    My gut instinct now is to nix the chemo, as the benefit does not seem to outweigh the risks for me. I do hope to have the radiation treatments and the Tamoxifen. My Oncologist, I'm concerned, may even refuse that route of treatment if I refuse, so I need to hear what others have been through, and how it worked out for them.

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited June 2017

    Josma, if you make more details about your diagnosis known, it would be helpful. Are you eligible for the Oncotype DX?

  • lrwells50
    lrwells50 Member Posts: 254
    edited June 2017

    I had NO node involvement, but when my OncotypeDX score came back it was 24, which was much higher than any of the docs predicted, so I'm doing chemo.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2017

    My oncodx was 34, I still refused chemo against onco advice.

  • IrishKatie55
    IrishKatie55 Member Posts: 33
    edited June 2017

    I , and MO, originally was going with no chemo. Lumpectomy , brachytherapy radiation, then Femara. I am 97% ER+ My markers said 22% recurrence rate, down to 14% with surgery & radiation & pills, down to 6% if i did the four rounds of chemo. For me, getting to single digits helped me decide to throw everything at this. Crap shoot I suppose.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    How U wish my oncotype test had come back before I began my bracothythapy began but it didn't.

  • nightcrawler
    nightcrawler Member Posts: 54
    edited June 2017

    I just had my lumpectomy on Monday. The surgeon got clear margins, and there was no node involvement. We're waiting back on the final path report to make absolutely certain, but my surgeon said the path report rarely contradicts what he sees during surgery.

    The doctor and nurse navigator don't think they're going to recommend chemo, just hormone therapy and maybe rads. I have already decided that, due to the fact that I'm grade I, ER+/PR+/HER-, and have no family history of cancer other than lung and cervical, I'm not doing chemo unless they tell me there's some staggering chance of recurrence, which is highly unlikely. I am willing to do rads and hormone therapy.

    I also want a hysterectomy because I have severe endometriosis, and I can no longer take bcp's, so it's about to spiral out of control again.

    It's all about risk appetite. I have a small risk appetite with the endometriosis because that's stage IV and highly aggressive; it's been making me violently ill since my very first period, it's all over my abdomen, and it's too extensive to just be taken out (I've had three laparoscopies, and the doctor did what he could). The cancer, thankfully, is slow-growing, so my risk appetite regarding this is large, especially since my surgeon got it all.

  • killerleftboob
    killerleftboob Member Posts: 1
    edited July 2017

    I was diagnosed in 2/2015 with ILC, which hadspread to my sentinel lymph nodes. I had bilateral mastectomies but refused chemo, radiation and hormone therapies. At the time, I was told that without those treatments I had 5 years to live. So far my screenings each year come back stable. Just had my chest, abdomen and pelvic CT. All stable. It's a hard decision to make and there are risks either way. Sending positive healing thoughts your way

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2017

    I said no to chemo. I was told my risk of recurrence would reduce from 23% to 10%.

    I need to make an appointment for my yearly mri but so far so good almost 6 years.

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2017

    I had 2 tumors each 1 cm, one ILC and one IDC er was 95 % pr < 1%, no nodes involved. My oncodx was 34.

    Did 4 years AI, had mastectomy with DIEP reconstruction.

  • Peacedreamer
    Peacedreamer Member Posts: 2
    edited November 2017

    Hi Monee, so what are you doing to treat your cancer and how is it going for you now?

  • Peacedreamer
    Peacedreamer Member Posts: 2
    edited November 2017

    recently I read that Tomoxafin, which is a standard conventional treatment for breast cancer, will cause endometrial or ovarian cancer withing 5 to 10 years. you might want to rethink taking that...

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2017

    Peacedreamer: Tamoxifen MAY cause endometrial cancer (as well as other side effects) but to the best of my knowledge, and per the information pages of this site, is NOT associated with ovarian cancer.

    The association with endometrial cancer is the reason that women taking tamoxifen are advised to be followed carefully by their OB/GYN.

    Please note that just because a side effect is possible does not mean that it WILL occur.

  • Setfree52
    Setfree52 Member Posts: 3
    edited March 2018

    how are you today?

  • Setfree52
    Setfree52 Member Posts: 3
    edited March 2018

    how are you doing now

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Hi Setfree52,

    And welcome to Breastcancer.org. You may want to be more specific who you are asking about. Seems like this topic hasn't been active since last November. Also, tell us a bit about yourself, if you would like so we can best help.

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