Choosing treatment for HER2+ BC post-lumpectomy

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CCLYYZ
CCLYYZ Member Posts: 12

Hi everyone,

My mother (64) was diagnosed in December 2015 and had her lumpectomy (left breast) 10 days later. All her stats are in the signature of this message but basically she is stage 2, grade 2, (2.3cm tumour), HER2+ and has seen her oncologist. His words: "you're cured - you no longer have breast cancer. The treatment plan I'm proposing is insurance." Interesting way to put it. It hasn't spread and surgery was very successful.

Here are our options:

  • do nothing and in 10 years 82% chance she'll be fine.
  • do what he suggests and in 10 years 87% chance she'll be fine
  • do something different (see alternate options below)
He suggests chemo (4 rounds, three weeks apart each) + Herceptin (every 3 weeks for 1 year), then radiation for 16 days, then Tomoxofin for 5 years.
This seems like a very aggressive treatment for stage 2, grade 2, "cured" cancer. I know he wants to give her the best shot possible but for 5% difference in her chances of being a-ok in 10 years? I don't know...a year of treatment is a long time for something that seems like may do fine with just Tomoxofin.
We know that Herceptin is best used with chemo and that it is the key when it comes to HER2 but we're feeling quite lost now.
Other options are:
  • start Tomoxofin and keep getting checked every 3 mo for a year, every 6 months the year after, every 1 year after that
  • do radiation and then Tomoxofin
  • do Herceptin alone (and pay the $3k per month as it's not covered unless done with chemo)
How do you go about making a decision like this? It's so overwhelming and we're so grateful that she is doing as well as she is. She is also a type 2 diabetic, no meds - under control for 4 years (diagnosed 2011) with diet and exercise. Quite a healthy and strong woman (although seems to be having potential gallbladder issues right now and going through more testing to ensure it's not related) and just wants to make the best choice for quality of life.
Looking forward to hearing everyone's thoughts - these boards have been instrumental in our research since diagnosis.
Thanks!

Comments

  • RebzAmy
    RebzAmy Member Posts: 322
    edited January 2016

    I personally would throw everything I could at it. The thing is you just never know what side of the statistics you are going to fall, and IF it came back then you would kick yourself and wish you'd done more initially - that's when it could be too late. I understand your mum has an underlying condition (diabetes) so I don't know how that affects the treatment she could have. Nobody can tell you that somebody is cured, not even the doctor. I know plenty of people who are now fine, some of whom had a high chance of recurrence, and I know a few people who had every chance of being cured and it came back. Maybe you should seek a second opinion.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2016

    Not to counter your Mom's doctor, but I would not claim that my cancer has been "cured." Instead, I would say that there is "no evidence of disease" (NED). Cancer cells are pretty small and they could still be circulating in your Mom's bloodstream and lymph system. That's why doctors recommend chemo, which is a systemic treatment and designed to wipe out the cancer cells that broke off from the tumor and might find a new home. Likewise, Tamoxifen is a systemic treatment that starves cancer of the estrogen that fuels its growth. In contrast, radiation is a localized treatment and wipes out stray cancer cells at the original site of the lump. As you can see from my signature, I did chemo, radiation, and am currently doing hormonal therapy, though I'm on Aromasin not Tamoxifen. HER2+ cancer is aggressive; your Mom should seriously consider doing Herceptin, as it is targeted to stop the growth of that particular cancer. Best wishes!

  • CCLYYZ
    CCLYYZ Member Posts: 12
    edited January 2016

    Thank you so much for your answers! Just to clarify - he said "cured" in a light way as he is insistent tha we think very positively about everything. I do agree with what you've said though! He is really pushing for the whole gamut - chemo, rads, hormones because he thinks one should throw everything at it too.

    What you've both said really clarifies things for me. I appreciate your wisdom on this emotional roller coaster!

  • JCS28
    JCS28 Member Posts: 153
    edited January 2016

    I just want to add that I don't think they actually know that Herceptin works best along with chemo. I think that just hasn't been studied. I had Herceptin and Perjeta before surgery, and it completely shrunk the tumor. And I had essentially no side effects from those two drugs. I just mention this to say that maybe you could ask your doctor about doing Herceptin/Perjeta but without the difficulty of chemo. I don't know if it's possible though. Depends on a lot of things including insurance. I was on them through a study.

  • VioletKali
    VioletKali Member Posts: 243
    edited January 2016

    Follow your gut instincts and what feels correct to *you*. (Or her, as it were..)

    I was DX at 32. I am an 18 month survivor. I chose a double mastectomy because I highly considered foregoing chemotherapy. I did try chemo, and discontinued it after 4 rounds. I also D/C'd herceptin.For *me*, I realized that my quality of life on chemo was awful, and nothing they offered worked for my symptoms. I am a Nurse, so I was aware of the limitations that were par for the course.

    I decided that if I did everything they wanted and it recurred anyway, I would be very mad that I continued chemo/herceptin. I had 2 blood transfusions, hospitalizations from nausea...etc.. It was dreadful for me, and I still have some lingering effects.

    I am one to say that it is a totally valid choice to decide that you do not want to throw the book at it, so to speak. I wish that I never had chemo, even though I know the risk of recurrence would have been higher. I have decided that IF I were to recur, that I may not choose chemo and would seek hospice care to ensure quality of life.

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited January 2016

    I wouldn't mess with her2+. But I threw the book at it so maybe I'm not the best judge. I still have 4 months of her cep tin to go.

  • VioletKali
    VioletKali Member Posts: 243
    edited January 2016

    I did attempt to do all that was medically advised, but I could not handle it. I think that people who chose to forego certain treatments, regardless of risks, should not feel badly for choosing to forego the standard of care.

  • Stephmoen
    Stephmoen Member Posts: 563
    edited January 2016

    her 2 survival rates are very high if you recieve a pathological complete response taxotere carboplatin herceptin and perjeta 6 rounds gave me a complete response survival rates were 92% after 10 years!! I went through hell was allergic to taxotere had to be drugged up with premeds was neutropenic and septic when my port became infected had to infuse myself with antibiotics 3 times a day for a month but I finished all 6 and so happy I did nothing's better than hearing chemo killed all your cancer

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited January 2016

    It sounds nuts, but the assumption that trastuzumab (Herceptin) "works better with chemo" is unproven. It is complicated, so even some medical providers don't fully explain that to patients. What caused this problem is that for far too long, the clinical trial system and medical providers stuck to an ethical concept that every alternative to chemo that was offered as part of clinical trials then had to be given with chemo (whether or not it would have worked better than chemo if used alone), just because chemo made a statistical improvement for a small subset of people with breast cancer. That created the situation of overkill, where many more people then were exposed to a system that unfortunately reduced the immune system response (which finally only recently is being understood well enough to be investigated more fully as a better alternative to chemo).

    It is hard as a newly diagnosed to sift through the history of standard treatment to be able to make concrete comparisons.

    A more accurate way to sum it up is that chemo works better with trastuzumab (because it is the trastuzumab that made a real difference). The addition of chemo makes a difference only in a very limited group of patients.

    All of this has resulted in "protective" treatment in the short run because of the additional benefit of chemo for that limited group of patients, but has resulted in failing to explore the treatments that worked better without chemo, and resulted in the compounded messes involved with having to give steroids, higher risk for infections, massive costs of chemotherapy, etc. that occur in the long run for the much larger group of patients that get no benefit from doing chemo.

    A.A.

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