Hi, and looking for help.
Was Dx hormone receptor breast cancer, 5.5cm tumour Grade 3, in July. Right breast. Micromets in 1 node. Was prescribed Anastrazoke. Which worked. Cancer A
SMX on 22/9, and histology on 7/10. Turns out only 70% of Cancer is Cancer A, but has shrunk to 4.4cm and downgraded to Grade 1.
Remaining 30% I’d Grade 3 Metaplastic squamous cell Triple negative. Very, very rare. Resistance to chemo. Spreads though blood. Cancer B
It has no NICE guidelines, and is treated as “ordinary” TN rules. That is neo adjuvant chemo + immuno, adjuvant Immuno.
I am being refused immuno, as didn’t have neo adjuvant for Cancer B as we didn’t know about it. And no guidelines for Metaplastic, as not enough evidence.
So rare, aggressive and difficult to treat cancer being left untreated by the one thing it does respond to, immuno, because not enough evidence on Cancer B (rare is always rare), and “missed” my chance on any adjuvant, because nobody knew about it.
I would not have consented to surgery if I had known this as anastrazole was working. No one said you could lose the right to treatment for anything that comes out of this. I could not have given informed consent, because of the blanket reliance there are placing on that now.
Help? Please? Marsden have just reinforced the NICE guidelines that won’t fund. Medics are ready to treat.
The net effect is that I am being left untreated to die from this. What to do? It’s not that I might die soon from cancer (although it is), it’s that I’m being abandoned by treatment.
Thank you.
Hi Ruthie577100be64bf and a warm welcome to the community.
I know the challenges well in living and being treated for a rare cancer….. my first is 8 in a million with the other 4 in a million (both are T-Cell Lymphomas)
Let look for anyone in this group with experience to pick up on your post.
You may want to put the same post up in our dedicated breast cancer groups listed below……. as there may be folks in these group with the same condition but have never used this specific group.
Breast cancer for the under-50s
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
……. all the very bast.
