Hi, I’ve just turned 45 and found a lump back in January. I was diagnosed with 10mm, grade 3, ductal carcinoma (20mm including high grade DCIS). My surgeon said it was TNBC but then said it wasn’t a true TNBC as I’m HER2 negative, ER negative, PR 5. I’ve had a lumpectomy and 4 lymph nodes removed. I had clear margins and clear lymph nodes. Genetics have come back negative as well. I’ve just finished chemotherapy and going to be starting radiotherapy shortly.
I just wondered if anyone else has the same type as me where only the progesterone was slightly positive? Also what your decision was on tamoxifen or similar hormone therapy? It’s been mentioned that I can go on it for 10yrs, but at my first Oncology apt she said there probably wasn’t any point as I’m mostly negative. It’s been mentioned again when we were discussing radiotherapy but I was only seeing a nurse. I asked what the point was if it’s only useful on oestrogen, so she’s booked me back in to see my Oncologist in January for a chat.
It would be nice to hear from people who are the same as me as I’m feeling a bit lost with it all. Xx
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Hi - yes, I have the same diagnosis! I am PR +4.75 But negative for ER and Her2. I am currently halfway through radiotherapy and will then go on capecitabine as there was some residual cancer left after my surgery.
I’ve not decided what to do about hormone treatment. My main concern is that I may be susceptible to a hormone driven cancer in the future as both my mother and grandmother have had hormonal bc. I’ve also read that if you are triple negative with one raised hormone marker then it’s likely that it started as a hormone driven cancer but then changed to Tnbc. I’ve never come across anyone else with just a raised PR level so it would be great to know what you decide to do. Best wishes, Emma
@ivy-cat Hi Emma! I’m so glad you replied! I was beginning to think I was the only person with this type. My mum also had hormone positive BC. My grandmother also had BC, but I don’t know what kind as she died when my dad was only 15.
That’s interesting what you’ve said about it starting out as hormone positive. I couldn’t find much about it, other than hormone therapy doesn’t really help for progesterone. I’ve got an apt on the 8th January but I feel like they’re going to say that it’s my decision. I have no idea what to do. I don’t know all the information like they do. 10yrs is a long time if it won’t help and I think the side effects can be quite bad for some people. I feel like I’m edging towards not taking it, but I don’t know if that’s just because I want to try and get back to myself.
Do you know what you’re edging more towards?
Well my surgeon says it’s not necessary but the oncologist says that it could be helpful. I’m reluctant to take tamoxifen as it can have horrible side effects but I would also be really annoyed with myself if I didn’t take it and then got a hormone driven bc in the future. I’ll see if I can attach a screenshot of something I saw on a triple negative forum recently, which made me think that it may be worth trying to ‘block’ hormones. In answer to your question, I really still don’t know what do!
My cancer is also Her2 low - so a real mix!
@ivy-cat That’s what’s at the back of my mind, if I don’t take tamoxifen and I have a reoccurrence, will I blame myself?
I’ve just read if you’re TNBC and don’t have a reoccurrence in the first 5 years, then you might have better odds than other breast cancers after that. I’m thinking maybe only stay on tamoxifen for 5 years but I honestly don’t know if I can take the side effects.
That screenshot is interesting. I wonder why they don’t treat all breast cancers with hormone therapy if there’s a chance they can come back as hormone positive.
Can I ask how old you are and how long they’ve advised you to be on tamoxifen?
There are so many variables and a lot of unknowns. These are such hard decisions.
I’m 55 - I haven’t discussed it fully with my oncologist yet. She just said shortly after my diagnosis that a hormone blocker would be an option for me. I still have a way to go in my treatment as I am due to go onto oral chemotherapy soon for several months, so I expect if I do take tamoxifen it would be once that has finished. My mum is currently on it but just for 5 years - probably due to her age. Did they say why they were recommending 10 years for you? Are you pre-menopausal?
@ivy-cat I think it’s 10yrs because of my age. I was 44 when diagnosed, just turned 45. My mum was on it for 5yrs as well. She hated it but knew it was for the best for her type of cancer. She was glad when the 5yrs were over.
I think I’m dreading tamoxifen because I’m comparing it to chemotherapy for some of the side effects. Joint pain, menopause, fatigue, nausea etc. I found chemo quite tough, had horrendous nausea and the night sweats are awful from the forced menopause. I just had my last chemotherapy last week.
I hope the rest of your treatment goes well. Hopefully our Oncologists will be on the ball and have all the information so that we can make informed choices and the right ones for us.
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