Under-treated with Chemotherapy???

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KNardo88
KNardo88 Member Posts: 54
edited June 2016 in Chemotherapy - Before, During, and After

Hi all,

Ever since the "cyst" in my right breast that "couldn't be cancer" ended up BEING CANCER, I've had a lot of trouble putting my trust in doctors... ANY doctors, regardless of expertise or credentials. After I got my initial cancer diagnosis, I went straight to one of the top 5 cancer centers in the nation for a 2nd opinion, and have moved forward with receiving treatment there. I'm fortunate to be treated by the best of the best there, and that being said, I really have no solid reasoning to be questioning things. Except for the fact that I'm a basket-case, and also a slave to Google. I met with my MO this past Thursday and received my treatment plan. I'm worried it's not enough?

I'm looking to hear from anyone else who has had or is having 4 rounds of Adriamycin & Cytoxan (AC) - 1 every 3 weeks - as their adjuvant chemotherapy.... And NOT receiving Taxol???

I'm questioning this because feel like I have only ever seen people receive AC followed by Taxol, as part of an "AC & T" regimen. To my understanding, the "T" is not going to be in my regimen at all. Just AC. And then I'll be taking Tamoxifen.

For a little background, I did not have any neo-adjuvant treatment, and had my BMX on 5/20. The resulting pathology shows that I have clear nodes, no LVI, and a small 0.9cm tumor. All great, however, I'm 27 years old and the tumor is grade 3, only 20% ER+, and negative everything else which suggests Luminal B. I also found out after my diagnosis that I am BRCA 1+. The pathology from the original biopsy that generated the original diagnosis before I got my 2nd opinion listed a HORRIFYINGLY HIGH ki-67 of 80-90%! This has been a huge sticking point with me ever since, despite the fact that the Top-5 Institute I go to now does not even report ki-67 in their pathology.

Am I crazy? Should I be pressing for a more aggressive regimen? Do I need to just pipe down and listen to the actual doctors and believe that they aren't skimping on my care? I'm very aware that AC is seriously hardcore stuff, but I guess I'm just worried that the result of not getting Taxol in addition would justbuy me a couple of years before this nightmare starts up again, with a vengeance. I'm looking for 50 years, not 5, not 15. My paperwork states that this treatment is being given with "curative" intent/goal, but the unrelenting pessimist in me wonders if that's even a real thing. Ugh.

Any and all input is greatly appreciated! All the best to you all!

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited June 2016

    Hi KNardo88:

    Is your profile information correct in showing Stage IB? Sometimes people accidentally select the wrong option from the drop-down options.

    I ask because you said you have "clear nodes", which I take to mean that you had no clinical evidence of lymph node involvement and the sentinel node biopsy results on final surgical pathology were designated as purely "N0".

    A 0.9 cm (9 mm) tumor is considered "T1" in terms of size (specifically "T1b" = Tumor > 5 mm but ≤ 10 mm in greatest dimension).

    T1 disease that is purely node negative (N0) with no evidence of distant metastasis (M0) would be T1 N0 M0 and that is considered Stage IA.

    For a T1-size tumor to be Stage IB requires micromets in the lymph nodes (i.e., "pN1mi" = Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm):

    https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

    I am a layperson with no medical training, so if unsure about the above, please ask your doctors for clarification.

    Also, to help others considering your chemotherapy regimen question, can you please confirm that the regimen recommended to you is [AC (doxorubicin/cyclophosphamide) every 3 weeks for 4 cycles], and not [Dose-dense AC (doxorubicin/cyclophosphamide) every 14 days for 4 cycles]?

    BarredOwl

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

    Hi!

    Your tumor seems pretty small (< 1 cm); it IS Grade 3, but it is not HER2+. Your nodes are clear. Four ACs might be just right for your situation, but I'm not an oncologist. What was your oncologist's rationale for your regimen? If you don't like his/her answer, you could always ask for another oncologist's recommendation, given your situation.

    Chemotherapy is systemic treatment, and it does have a role to play in preventing recurrence and improving survival rates. However, many chemos have a lifetime limit, and you might want to save some of the "big guns" for later, in case you need them.


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  • KNardo88
    KNardo88 Member Posts: 54
    edited June 2016

    BarredOwl - Thank you for showing me that, as I now realize that I was confused in my actual staging. I thought that because my pathology report listed my official stage as "T1bN0M0" (based on AJCC 7th Edition), that this meant Stage 1B because of the "T1b" part. Thank you for the excellent resource! Also for clarification about my treatment plan, it is not dose dense.

    ElaineTherese - Thank you for the suggestions!I plan to contact my MO on Monday to clear things up and ease my mind. He did give me explanations as to why no Taxol, why not dose-dense, etc., but I want to clarify again. Especially since I can't even remember what the reasoning was. I didn't question it during the appointment because it made sense. It was only once I got home and hopped back on the good ol' internet that I became a little weary based on the lack of people who have had the same treatment regimen as me.



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  • KNardo88
    KNardo88 Member Posts: 54
    edited June 2016

    Thank you all so much for the feedback and the advice! I wanted to update here on what I was able to find out once I gave my MO a call to clarify and revisit the things I had been unsure about...

    I asked about the reasoning for not having Taxol as part of my regimen, or AC&T as is typically seen in a TON of patients. Apparently, it's been studied that in patients with early-stage, small tumors (<1cm), with totally negative nodes and ER+/HER2-, the addition of Taxol following AC does not provide any additional benefits, but just adds more side effects and risk of permanent issues in the future due to the additional toxicity.

    I was hesitant about this all at first because I know MANY who have had all of the above characteristics with their cancers and were still treated with AC&T, but I have no idea the real ins and outs of their circumstances, and can only trust that my team of doctors know what's best regarding my own particular case.

    Imade sure to directly address my concern of not being aggressive enough, and was reassured that this was certainly a very aggressive regimen for my cancer. I mentioned my nagging concern over the extremely high ki67 that was reported on the biopsy pathology from the institution where I was initially diagnosed. My MO said that it all coincides with the fact that we know my tumor to have been high grade, which is what warranted the AC regimen to begin with. I was told to see that as a reaffirmation that this chemo will WORK.

    I'm also receiving AC on a standard dose schedule rather than dose-dense because it's been found that when receiving AC alone, the longer duration of exposure associated with the standard dose is more beneficial than the shorter duration you get with a dose dense regimen. So by making my treatment a standard dose, I'm receiving AC for 12 weeks versus 8.

    Everything was explained to me in depth during the phone call and certainly made sense, so I'm glad I called and asked more questions! That said, we're on for 6/23 for my first infusion. Ahhh!

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