Does this treatment plan sound right?

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Honeybee68
Honeybee68 Member Posts: 34
edited July 2018 in Stage IV/Metastatic Breast Cancer ONLY

I saw a medical oncologist at Mayo. Their pathology says that I am ER-, PR-, HER2+ (3+). I have one lymph node that is positive and two spots in liver that are biopsy confirmed mets. All else looks clear. He said this is stage IV (no surprise) and that there is no cure for that stage - only treatment (also no surprise to me). He suggested THP. He wants me to do the Taxol for at least three months, and as long as five months if I can handle it and it looks like it is helping. He said I would be on Herceptin and Perjeta indefinitely.

When I asked about what comes after THP, such as surgery or radiation or both, he said they don't do those with stage IV. He said they only do them to alleviate pain. He said maybe they would be an option for someone like me with limited mets, but we will have to see how my three month scan looks before we would talk about those options.

He said the prognosis for stage IV BC is that the median survival with THP is 5 years. He said I would stay on H and P as long as I can tolerate them and they seem to be holding things steady. When there is progression that is unacceptable, he would switch me to the second line treatment protocol. He said he doesn't want to switch without a good reason to do so because there are only so many treatment options and we don't want to run out of them too soon.

Does this all sound right to you? It was very depressing. I guess I was expecting a more positive picture given that I am oligometastic. There also seem to be more studies coming out that show HER2+, ER- tends to have a higher rate of pathological complete response, which is prognostic of longer survival. I know no one can tell me for sure if that will happen, but his message seemed very gloomy to me.

What did/does your MO tell you? Is it similar? I want to be realistic and I know this is very serious, but I also want to hear some good statistics, not just the bad ones. Am I being unrealistic? I was hoping he would say let's try for a cure. No such luck.

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  • Sue2009
    Sue2009 Member Posts: 228
    edited July 2018

    wow, so depressing!!! I am confused. I have been stage 4 for 9 years. I have had radiation since 2010 for different spots of recurring mets. Radiation in initial spot has yet to reoccur. Have your pity party, and then stay positive. Also if you can find a good RO, get their opinion. Mine treated a tumor last summer for tumor growing off my skull, behind my eye. Still here a year later & staying positive , I am sure u will see quite a few of us who have been dealing with this well over 5 years. Hope this helped. Sue.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2018

    Honeybee, I'm not her2+, so I know little about the specific treatment for this type mbc. I do know stage iv patients often do not have surgery. I'm one that actually had a lumpectomy after chemo shrunk the tumor. Then I had 33 rounds of radiation.

    Being at this for a long time, I've learned there are many ways of approach to treating this disease. No one really knows why the same treatment for the same type bc for woman A works better than for woman B. I've learned to listen to doctor advice along with educating myself and listen to my own intuition When I was first diagnosed, I thought treatment would be a very defined, strict set of steps that were proven to be the best route, and I would simply follow them. But I found there was much more to it.

    I'm not happy your onc told you “median survival is 5 years." That part is definitely gloomy, and I don't think the onc should have presented it that way. When my onc told me “its stage iv, but with treatment, you can live with this for years." I had the incredible clarity to say, “Define years!” Because that is a very subjective statement. And she said, “I've had a patient doing so well she's been at this 15 years." That gave me a glimmer of hope, very needed at the moment.

    I don't think a doctor should tell you they are going to try to “cure" mbc. It would be extremely misleading. Some will tell you that they treat it as a chronic disease.

    Many of us view our diagnosis as living with mbc, not dying from it. I find it is better to frame what mbc means to us personally rather than allow a medical professional tell us what it means statistically. You will learn more and gain greater understanding as you move forward with treatment. Yes, it is a roller coaster ride of emotions, but many of us are livng full lives with mbc. Some of the best moments I've had came after this disgnosis, not because of it but in spite of it.

    There is definitely hope. Take it one day at a time, tho. Re-assess what is and isnt working in your life. Change what isnt working and do more of what you want. Live more in the moment. Best wishes to you!

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  • LoriCA
    LoriCA Member Posts: 923
    edited July 2018

    Honeybee68 I am on that exact same protocol. Each of us is different but I'll explain why my doctor recommended that plan for me. I told my MO up front to be blunt with me, I didn't want any false hopes and as hard as it might be to hear some of what he tells me, I can deal with it. I know the statistics (I have IBC, the statistics are even worse) and we all want to be that person who beats the odds, that's normal. I'm sure as hell giving it my best. We are completely focused on my quality of life - living as best I can for as long as I can. Surgery won't cure me and it will negatively impact my quality of life. We discussed it again a few weeks ago (I was afraid the cancer was active again but an MRI showed that the symptoms were actually due to healing) and he still believes that surgery would do me more harm than good. I'm okay with that.

    Here's why - I had a great response to taxol. I had lost use of my right arm when the tumor invaded the brachial nerves, and I regained full range of motion of that arm, my tumors shrank, my skin mets healed, and my bones showed good signs of healing. I'll never be NED but the cancer is under control right now. Herceptin and Perjeta has been amazing. Last September they didn't think I would make it 2 months because the cancer had spread so quickly and did a lot damage, today if you met me you would never know that I have terminal cancer. I feel fantastic (I can deal with the minor SEs of H&P), I'm in better shape than many of my "healthy" friends, and I'm so grateful to have this opportunity to fully enjoy life. My life doesn't revolve around my cancer right now. I never thought it was possible to feel this good with Stage IV, especially with how extensive my mets are (were?). I'll stay on H&P for as long as I can. I know it won't last forever, and when it stops working and the cancer starts causing serious symptoms again, then I'll deal with the possibility of more drastic treatment. If H&P stops working tomorrow I still won't regret following this path, but I'm inspired by the women on this forum who have been on H&P for many years.

    I have less than a year into this so I'm not yet an example of how long someone can live with H&P, but I'm giving it my best shot at being an "exceptional responder" by taking good care of myself. What I can tell you is that when H&P works it is a fantastic treatment. Getting through chemo is the hard part, and the first couple months of H&P weren't easy as my body adjusted (it further depletes estrogen, even if you're post-menopausal), but once my body got used to it I felt better and better every day. I stopped worrying about how much longer I would live, I feel great and I'm just going to let myself enjoy every day.

    Please don't think of THP with no surgery/rads as a depressing treatment plan, or as a sign of a depressing diagnosis. Give yourself some time to come to terms with your DX, it is so hard to hear that you are Stage IV and you have a lot of emotions that you need to process. THP and no surgery really has been an amazing treatment plan for me, I know that it was the right thing to do, and I hope that is for you too.

    Wishing you all the best!

    Lori

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  • pajim
    pajim Member Posts: 2,785
    edited July 2018

    Honeybee, I'm so sorry to welcome you to our august group.

    Your oncologist is basing his recommendation on that last major first-line HER2+ MBC treatment trial. You can read it yourself: (BTW, it's always good to ask your onc WHY they are recommending whatever it is)

    https://www.nejm.org/doi/full/10.1056/NEJMoa141351...

    It sounds like standard of care to me. I too am not HER2+. 10 years ago it was a very deadly type of breast cancer. Today and in the pipeline there are many more drugs to treat HER+ cancer than for the rest of us.

    About that 5-year median. That means that 50% of women died before 5 years were up and the rest lasted longer. The study finished in 2014. More drugs have come online since then. On top of which, when you look at the curves, there are women who, unfortunately, do not respond to any treatment no matter what we do. They are all included in that 50%. If you respond to this, you'll likely be alive for a long long time.

    Once again, welcome! Life will get easier as you get used to all this.

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