TN told no hormone treatment, now saying i need it? LOST :(

TurboKitten88

Ok this is a little long so I'm sorry but bare with me. I'm hoping to find someone in a similar situation! diagnosed at 28 with TNBC grade 3, IDC, 2.5 cm, stage 2, no node involvement. My pathology came back 0% estrogen, 0%HER2, and 1%progesterone. From the start I was told that was TN because anything under 5-8% was considered TN, it just depended on your treatment center and what the "cut off" percentage was. So everyone is calling it TN, the doc, me. We do the treatment plan for TN. 4DD AC followed by 4DD taxol, lumpectomy, then radiation. I was told hormone treatment would do nothing for me, exact words from the doctor. Great. we are all on the same page. This last visit with oncologist they said they wanted to talk to me about when I was going to start my hormone treatment tamoxifen...what. Now they are back tracking and saying well you did have that 1%...first of all...I thought tamoxifen treated estrogen positive cancer? second of all... why are they flipping this one me? I'm completely taken back by this. Has anyone else had a similar situation? idk what to do at all. I was not even thinking about being on anything like that! also I'm only 29 now, I have no children,.... I would love to be able to still have a baby...idk this is just a huge change in treatment and I don't know what do. I'm scared and mad honestly. So lost. Trying to find anyone in a similar situation to help..... thank you ladies....

Momchichi

hi turbokitten,

I was originally triple negative before HER2 was found in lymph nodes. I'm only 2-3% ER/PR positive and my MO just said she'd like to have me try tamoxifen to see if I tolerate it but if not, it won't likely offer me much benefit anyways. Sounds like a wishy-washy approach to me and I'm not feeling too confident about it. Did your dr give you specific numbers so you can decide if it's worth the side effects in your case? I'm still on chemo so don't need to decide for awhile. I agree it's frustrating to think you're done with treatment and being faced with another big decision. Best wishes to you, keep us posted

Bosombuddy101

Turbo,

You'll be hard pressed to find a triple negative cancer patient who is taking hormone therapy. It struck me that you should get a second or third opinion before going down this path. These drugs are not without risks and what is exactly is the benefit?? I can understand your reluctance, the recommendation from the MO make absolutely no sense whatsoever! I'm sure there will be others along to give you their insight.

moth

I'm weakly ER+ (oncotype actually has me as a neg) and I was told that for chemo we would treat it as TN, but for endocrine therapy, any positive ER staining warrants treatment.

However, I have read that "Consensus was not reached about whether to administer adjuvant endocrine therapy in patients with er-negative but pr-positive tumours." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC43817... (summary, table)

I would suggest you ask your MO for the evidence based guidelines that they're using to make recommendations for you.

bravepoint

I am ER3%, PR- HER2-. One RO referred to me as TN initially but my MO feels that anything over 1% is worth trying with hormone therapy. I am post menopausal wo am taking Exemestane. It's been 6 months and the SEs are tolerable. I have some achiness in my knees but so far that's all. I am supposed to take it for 5 years

klvans

I am also weakly ER+ PR- HER2-. Oncologists seem to vary in how they treat patients like us. Mine has told me she would like me to try an AI but that if I couldn't tolerate it she wouldn't insist upon it because the amount of benefit is unknown. It's known that for strongly + women there is a strong benefit but much less is known for weakly + women. Some studies show there is "some benefit" to all + women but they don't specify how much. When I asked my oncologist about it she said that not enough research has been done to determine it and that most studies don't enroll very many weakly positive ER women. I have never heard of a ER- PR+ HER2- woman taking a hormone surppressant but I'm not a Dr. Maybe they do. All of us need to be informed about our choices and it's very ok to get a second opinion. I think it's important to really listen though and not just find someone who'll validate what you want to hear. I do know women go off there meds to have babies. I think there's a thread somewhere here on that topic. I hope you find the information that leads to a comfortable, informed decision.

klvans

I am also weakly ER+ PR- HER2-. Oncologists seem to vary in how they treat patients like us. Mine has told me she would like me to try an AI but that if I couldn't tolerate it she wouldn't insist upon it because the amount of benefit is unknown. It's known that for strongly + women there is a strong benefit but much less is known for weakly + women. Some studies show there is "some benefit" to all + women but they don't specify how much. When I asked my oncologist about it she said that not enough research has been done to determine it and that most studies don't enroll very many weakly positive ER women. I have never heard of a ER- PR+ HER2- woman taking a hormone suppressant but I'm not a Dr. Maybe they do. All of us need to be informed about our choices and it's very ok to get a second opinion. I think it's important to really listen though and not just find someone who'll validate what you want to hear. I do know women go off there meds to have babies. I think there's a thread somewhere here on that topic. I hope you find the information that leads to a comfortable, informed decision.

And I agree with Pre-K79 the lack of specific numbers showing what benefit low + women get from hormone suppressants is frustrating. That "some benefit" phrase is so nebulous. Seems like science could do better.