I was dx with her 2 neg , er8 , 1.4 mm grade 2, with 1 lymph node. I’m looking for words of wisdom.
I’ve had lumpectomy sep 24, lymph node clearance and radiotherapy . I am taking examestane and have zoledronic acid every 6 months.
i really struggled with the initial diagnosis, as I’m sure most people do. I still get serious hot flushes and achey joint. In order to cope with the diagnosis I’ve put it in a box with the lid on it in my mind and try to forget about the diagnosis, it’s the way I cope.
But getting to my point is that on Friday evening I received an email from Christie’s (oncology hospital ) saying I am eligible for kisqali due to new NICE guidelines on the NHS, because my cancer has ‘high risk features’! I have never been told I have high risk features, this caused me to go into a complete tailspin. I know I should be thankful a new drug has been offered to help recurrence , but on reading the schedule it’s sounds awful. I still work. I just thought I had put most of the treatment behind me and getting on with my life without thinking of breast cancer. It still shocks me when I write breast cancer. Have a not accepted this diagnosis? I can’t believe they would send me an email on a Friday evening telling me I have high risk features.
I feel so upset by all of this .
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I was HER2+ and ER+ so I had surgery, chemo/herceptin, radiotherapy, zoledronic acid and hormone therapy. I already knew my HER2+ diagnosis meant I had an aggressive form of bc but I was never told my full prognosis, just that it could be treated successfully.
I’m currently on Exemestane and zoledronic acid. My hot flushes or heat surges are horrible and have been trying to find things that help. I see a menopause specialist.
I am also ER8 which I believe is high estrogen receptor, the scale is 0-8.
If I was you, I wouldn’t be happy getting an email out of the blue, especially on a Friday. I would probably call the breast cancer/ oncology nurses on Monday to ask for some more information.
On the positive side, the guidelines have changed or a new drug has been introduced that can help prevent recurrence or spread. They are including you even though your diagnosis was 2024, they could have just used this treatment for future patients.
The BCN nurses are not available until Monday at 9 on 0808 8006000 but MacMillan have a helpline open today 8-8 on 0808 808 0000 if you wanted to chat with someone.
I hope you get the answers you need.
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Thank you for replying to me. I will seek further advice on this, it just came out of the blue, with no explanation other than my cancer has high risk features via an email on Friday late afternoon ! No one has ever said that to me, looking at the NICE guidelines it appears I may have been triggered due to having 1 positive lymph node. I’ve had such a miserable weekend,
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Take care. Let us know how you get on.
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