TCH-P or ACTHP help please

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Butterfly2017
Butterfly2017 Member Posts: 4
edited July 2017 in HER2+ (Positive) Breast Cancer

Hi there - hope some of you have been in a similar situation and can provide some advice! I am a grade 3 infiltrating ductal carcinoma ER positive PR negative HER-2+++ with one 2.8cm tumor in the right breast, and benign lymph nodes, MRI looks good nothing under the arm.

I'm getting two different opinions on which chemo regimen I should do. Both options seem to be fairly frequently used, and both hospitals are top-notch and I really like all the doctors I've been to. My gynecologist called me and told me that I have cancer that I should go to see a oncologist because she knew nothing about. She sent me to Lenox but after I told few people everyone recommended me to go to Sloan Kettering. Both hospitals are in NYC.

I'm just wondering how I decide which regimen is best and how to choose.... I always believe doctors in NYC would do the same treatment!

I tried to go see another doctor for another opinion b they need the slides and it takes forever still on the way to Sloan and after insist a lot they saw me without the slides with a recommendation email.


I think I just want to know the pro's and con's of and how am I suppose to know what is best for my health?

I am very very very worry and if you can please help me.


option A = Lenox Hospital (Taxotere + Carboplatin + Herceptin + Perjeta - every 3 weeks, 6 times).

option B =Sloan Kettering Hospital (Adriamycin/Cytoxin every other week, 4 times + Taxol/Herceptin/Perjeta every week, 12 times) and

option A and B = Both options suggested surgery after treatment above followed by Herceptin for the full year.

Both recomended fertilization treatment to freeze my eggs before chemo. I am not able to make embrios because I went on vacation and due zika virus... its a nightmare! On treatment injections now a least will save my eggs... hoping for the best.Both recommended surgery after 6 months treatment

Also the survival rate I see on my not so friend google says 5 years? I asked the doctors because if I will only live 5 years I wouldn't spend the money I don't have with fertilization.

Can I just don't treat this cancer? I cant find anything on internet on people that just didn't treated? this meds ar epoison! I feel like a rat in the system is swallowing me!


I apologize for my bad english X( bless your heart, thanks

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  • MargaretEleanor
    MargaretEleanor Member Posts: 42
    edited July 2017

    I'm so sorry you're faced with this decision. Dr Google isn't always right and I suspect your odds for survival with treatment are a bit greater than five years. I was 4.5cm multifocal with at least two positive nodes, HER2+, ER+ seven years ago. My daughter just graduated from high school and will be leaving for college in about a month, she's playing soccer and they move in early to start training before classes start. I expect to see her graduate college and go on to medical school or graduate school.

    I never say I'm cancer free, but, I have no evidence of disease. I've had a scare or two resulting in a scan or two, but so far, so good. I still check in with my oncologist once a year and never ever take a single day for granted and I never have a bad hair day 😉

    I was offered almost the same two chemo options you are being offered, except, I was not offered Perjeta; I don't think it was even a trial drug yet. I chose Adriamycin-Cytoxin/Taxol-Herceptin because of my confidence in the medical team and facility that offered that choice. There are potential cardiac issues with both Adriamycin and Herceptin, but, there is also about a 10% chance your hair may NOT grow back with Taxotere. Both chemo regimens have just about equal outcomes.

    Your english is fine. This diagnosis is a shock and the decisions can be overwhelming. However, the treatment is absolutely doable and I suspect that with the addition of Perjeta you will have much more than five years to look forward to.

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  • Butterfly2017
    Butterfly2017 Member Posts: 4
    edited July 2017

    Dear Margaret,

    Thank you very much for your reply, good to hear you are doing fine and looking forward to your daughters graduation.

    The treatment ACTHP was offered by the Doctor and team that developed the treatment Jose Beselga. they are not only doctors but scientists and researchers trying to find a solution to stop cancer. He strongly told me that TCHP is a regim he would give to someone older but considering I am 38 and in good health, besides Cancer, I am a good candidate.

    The TCHP was given from a very great private doctor that is more conservative.

    I am learning that the Cancer Center like Sloan are more aggressive in treatment but they also more prepare to deal with it. At Sloan I have all done easily in one facility and the private doctor I have to run around for exams and all.

    After reading your comments that give me hope my big question is the late side effects from this drugs.

    ACTHP seem like a very dangerous combination for the heart speciallity.

    I need to make a decision and I am so worry.

    Thank you so much for your reply Margareth, I see that even after 7 years free your heart still warm for what happened to you because you are here helping others and this is beautiful.


    thank you, bless be your heart and all your wishes come to you.

    Renata

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  • Butterfly2017
    Butterfly2017 Member Posts: 4
    edited July 2017

    There is a way to consult an Oncologist to talk to me about both treatments? Doctors in NY won't see you without biopsy slides because they are scarded of malpractice. I need to see someone that could explain both treatments but can't find it. I am looking via skype of other countries. Not sure what to do....

    when the doctors personal interests became more important than see a patiente in agony and they refuse to give you information. '


    so sad.... health care and respect with human being is a must.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Butterfly - sorry for the run around you seem to be getting. I had neo-adjuvant TCHP and did not have pCR (complete response) So after surgery I had AC - and of course they stopped the Herceptin for that period because of the heart issues. Then I had HErceptin for a year and 5 weeks of rads. I agree about monitoring the heart issues. Make sure they do a MUGA or other heart scan between infusions. Supposedly the heart recovers from Herceptin damage bur Adriamycin damage can be permanent.

    Personally I would probably choose Sloan Kettering because they are a NCI hospital. But then I didn't choose MD Anderson when I live in Houston because I didn't want to be a number in a slot. I was fortunate that I had another NCI choice in Houston.

    https://en.wikipedia.org/wiki/NCI-designated_Cance...


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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017

    Butterfly2017 - It can be so overwhelming to have all of these options thrown at you!

    My MO told me that the AC combo was slightly better/stronger than the TC combo. He was concerned about the potential heart issues, though. I agreed with doing the TC - I only have one heart.

    I would advise you to go where you feel the most comfortable. I think most protocols are pretty standard so feeling like you are heard and not just a number is important.


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  • MargaretEleanor
    MargaretEleanor Member Posts: 42
    edited July 2017

    Minus Two, you mentioned something really important that I had forgotten and that is the convenience of having all your doctors, labs, imaging, everything and everybody all together under one "roof". They also read each other's notes about you and talk about you in the hallway. I loved it! It seemed to make the treatment process much less stressful by not having to visit three different places (lab for blood work, radiology for an echo, nurse/doctor visit) just to get chemo.

    I would also strongly recommend a second opinion on your pathology (slides). My original read said I was ER-. I had a second opinion that said I was 5% ER+. Neoadjuvant chemo cleared tumors from my nodes and took the 4.5cm multifocal tumor down to 2mm, still HER2+, but 80%ER+.

    You can do this Butterfly. Just let us know how we can help.

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  • Butterfly2017
    Butterfly2017 Member Posts: 4
    edited July 2017

    thank you so very much for writing back... my dear ladies out there ;)

    trying to go for a 3rd opinion at Cornell.

    This is so hard... I always believe that after having my results it would be ONE available best treatment and now having to decide what to do when I have no idea about it.

    I am in despair!

    thanks you

    Bless your heart!


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  • Mommato3
    Mommato3 Member Posts: 633
    edited July 2017

    Hi Butterfly, I did AC-THP chemo. My MO, at the time, recommended this regimen because I was younger and healthy. He said TCHP has a lot of gastrointestinal issues that can make it tough to finish. There is always the risk of heart issues with Adriamycin so it's something to consider. I had a slight drop in my EF during the Herceptin only portion. I consulted a cardiologist that put me on heart meds to protect my heart so I could finish my last four Herceptin treatments. My EF went back up before I even finished Herceptin. I'm just over three years out now and am doing well. It's a tough decision but both regimens are great options.

    I'm not sure where you read about a five year survival rate. Herceptin has definitely been a game changer in treating Her2+ BC. Always check with your MO to see what "your" stats are. Good luck to you!

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