Need help and advice regarding chemo treatment

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hbluv
hbluv Member Posts: 16

Hello,

This is my first post to this group. I have read many posts and responses and I know there are wonderful people here. I need some help deciding which chemo cocktail is best for me. A little bit about my situation. I'm 36. I have two young children. I discovered the lump through self test. I was dx on 5/22/18. Surgery was on 7/19/18. I have stage 2 cancer (2.5cm) and 1 node positive. 13 other nodes were negative. I have BRCA1 and PALB2. I'm ER+, PR+, HER2-. My tumor was grade 3. Doctors have said I can safely skip radiation, but need chemo. I also have high blood pressure that has been treated with medicine since my 20's.

I met with my chemo doctor today. I have Kaiser. He said the standard of care is ACT and therefore that is his recommendation. I told him of the negative effects on the heart and he admitted that is possible, but that ACT would be the most effective in reducing risk of recurrence and giving me the best prognosis. He did say there is about a 5% risk of developing congestive heart disease with ACT and about 2% risk of leukemia. He brought up a website called lifemath.net and showed me my survival rate without chemo and with ACT chemo. With ACT chemo, the website said I have a 91% survival rate at 10 years. However, I brought up the possibility of taking TC instead. He did tell me there's about a 5% possibility of permanent hair loss. He also said that ACT would be slightly more effective. However, when I asked him to plug in that treatment on the lifemath.net website, it showed that with TC, my survival rate at 10 years would also be 91%, the exact same as ACT. So he ended up admitting that either treatment would be fine, but he still recommends ACT. I asked about the effect of ACT considering my high blood pressure, and he said it wouldn't be a problem so long as i continue to take my blood pressure medicine.

What has been your experience and which should I choose? Thanks.

Comments

  • moth
    moth Member Posts: 4,800
    edited August 2018

    hbluv - sorry you find yourself here but welcome.

    So....fwiw, my biopsy originally listed me as weakly ER+ & PR- At that time, my oncologist was planning on recommending TC x 4. When my Oncotype came back and I was essentially a triple negative, she changed her chemo recommendation to AC+T. They all have their downsides but AC+T is, I understand, considered to be more appropriate for aggressive treatment. I think that as young as you are, with a Gr 3 and a positive node, I'd personally treat aggressively.

    Before they did the AC portion, they sent me for an echocardiogram to get a baseline of heart function & the ejection fraction. I think if you're really concerned about your heart - & I get it, I really do as I'm active, and starting a new career & I really really wanted my heart to be ok - maybe see if you can get a cardiologist to be part of your active treatment team & see what they think.

    You could also try your stats in the Predict calculator. I think it's validated with a slightly more recent dataset http://www.predict.nhs.uk/predict_v2.1/tool

    (btw, just in case you do go the AC+T route, during chemo my resting heart rate went up from the low 60s which is my norm into high 80s. I was concerned and worried about it but my MO kept reassuring me it was ok. Within a couple weeks of ending chemo my resting HR started coming down & is almost back to normal now, 4 weeks pfc).

    best wishes ~

  • Bostoniangal25
    Bostoniangal25 Member Posts: 263
    edited August 2018

    I think ac is stronger than tc , and because it is stage2, grade 3 they want more than less. That is my thoughts. U just have to carefully Wright - it’s your decision, take a second opinion with the oncology program director. They might agree or disagree . But don’t tell a second opinion doctor that you were offered ACT - let them talk !! Good luck❤️❤️

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2018

    My MO discussed both options with me initially. He said that the AC was slightly better, but the heart risks from it added to the heart risks from Herceptin made it not as good of a choice. I was 50 at diagnosis with no heart problems.


  • WC3
    WC3 Member Posts: 1,540
    edited August 2018

    I think I would consult with more oncologists first. I got two consultations. I had a third one set up but had to cancel and was leaning towards the place I ended up going anyway. The treatment for my cancer type is pretty standardized (TCHP for triple positive breast cancer) but I'm glad I had multiple consultations because I learned more.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2018

    Hi!

    I was 46 when diagnosed, and I've had high blood pressure since I was 40. I take a three-drug cocktail (Lisinopril, Amlodapine, and Hydrochlorothyazide), and my blood pressure is under control.

    I did AC+THP (Taxol + Herceptin + Perjeta) on my oncologist's recommendation. Of course, I did get heart scans every three months to make sure that the Adriamycin and later, the Herceptin, didn't damage my heart. My heart was fine.

    My oncologist likes AC+T because more of her patients finish treatment on that regimen than those who do TC. Many of my triple positive buddies have made it through TC+HP, but some do have gastrointestinal issues (e.g., diarrhea).

    If you want to cold cap to preserve your hair, TC is better. (Cold caps don't work particularly well with AC). If you want to avoid the possibility of permanent hair loss, AC+T is your best bet.

    They each have their pros and cons. Definitely talk to another oncologist if you don't feel comfortable with your oncologist's recommendation. Good luck!


  • WC3
    WC3 Member Posts: 1,540
    edited August 2018

    One of the oncologists I consulted with, who was very experienced and well regarded, told me to stay away from Adriamycin (in conjunction with herceptin?) I am guessing due to the potential for heart problems which can show up years later.

    I'm on TCHP for triple positive BC and just had my 4th of 6 infusions. It's not fun and I wish I were closer finishing. Sometimes I have a bad day where I am like "I'm done! Do the surgery!" but it's not as bad as I imagined chemo would be. I start to feel back to normal a few days before my next infusion. Each cycle is a little different for me. My last cycle I felt pretty good for a week and a half before my next infusion...but then it got delayed due to low platelets so I got two and a half weeks of feeling good.

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