Hi all. This is a bit of an unusual situation - well, I think it’s fairly unusual anyway.
I was originally diagnosed with low ER positive, HER2 negative grade 3 IDC stage 2b in November last year.
Decided to do chemo before surgery. After two rounds, tumour shrank, before it started rapidly regrowing again and I ended up finishing a cycle early and having surgery sooner. I had quite a bit of residual disease (35mm of tumour and a lymph node) remaining.
Pathology from the surgery has shown that ER and HER2 is actually 0 on both the tumour and the lymph node and it has basal like features.
I only found this out over the weekend as I was send the letter by text on a Sunday morning.
anyway, I’m still waiting to speak to the hospital for more info, but I’m assuming they’ll now be treating me as if I’m triple negative rather than weakly ER positive and my treatment plan will change.
Has anyone else been in a similar situation or come across anyone else who has?
I’m pretty gutted because it now changes my outlook, and I feel I potentially missed out on treatments I could have had if I’d been diagnosed as triple negative originally (immunotherapy for example, which is now off the table). I realise that’s not how things work in reality but I just can’t get the thought out of my mind that I’ve been undertreated.
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Hi, I was diagnosed with triple negative breast cancer August 25. My treatment came with lots of hurdles. The first being that I was allergic to the immunotherapy and also one of the chemotherapies that is most commonly used for the treatment of triple negative breast cancer. As a result of this my team reviewed what would be more suitable for me and as a result I was placed on alternatives. I was concerned at the time that I wouldn’t be getting the best treatment available for triple negative breast cancer because of the guidelines. However, my oncologist and his team reassured me that I would be fine with the treatment that I had and that my outcome was just as effective as the immunotherapy route. Whilst I don’t think anybody can give you 100% guarantees that all treatments work the same because they don’t I think that from what I experienced was a very positive outcome.
Whilst I don’t think anybody can give you 100% guarantees that all treatments work the same cause they don’t I think that from what I experienced was a very positive outcome.
I am part of the triple negative breast cancer UK and Ireland group on Facebook. I found the group members really supportive throughout my treatment. I can honestly say that without them I probably would be really lost. They will have more information about this than I have as well. There is also a triple negative breast cancer expert within the group who once a week opens up the forum so that others can ask any questions similar to this one.
I can honestly say that without them I probably would be really lost. They will have more information about this than I have as well. There is also a triple negative breast cancer expert within the group who once a week opens up the forum so that others can ask any questions similar to this one.
I wish you well on your journey and hope for the best positive outcome for you.
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