Hello
I was diagnosed with a ER-/ HER2+ breast cancer in February 2022 and had lumpectomy with clear margins/clear nodes so all good. Then I was told that I needed chemo which was a surprise as I was told that chemo was definitely NOT on the agenda & I was transferred to oncology who promptly 'lost' my records. So having been given 3 days notice of starting chemo (2 months after being handed over to oncology care) I had 4 cycles of Docetaxal (?) & this was along side Herceptin which planned for 18 treatments over 12 months. Herceptin was stopped after 9 cycles (in Nov '22) because my lungs and heart reacted badly. I saw a radiology consultant in July '22 who said that RT would increase survival by 1% but as the tumour area was close to heart I was cautious and he would not provide me with any statistical info regarding potential damage etc so I refused RT on this basis (he was horrible and shouted at me). I saw an oncologist in Jan '23 and again May'23 but couldn't attend an appointment in Aug'23 because of illness and was told to wait for a new appointment. I never heard from oncology again despite leaving messages asking what was going on etc.
In November 2023 I realised that my cancer had returned (my cat told me & he was right the 1st time too) so I phoned oncology leaving messages twice and one message with breast care dept but was ignored. Christmas was coming and my annual mammogram was due in Feb'24 so I waited for that. My mammogram has indeed revealed that I have cancer again in the same breast and same type but much bigger this time.
I know people are going to judge me (and please keep your views to yourself) but I have decided that I don't want surgery, RT or chemo (and Herceptin is off the table anyway). Oncology are refusing to engage with me over what had happened in 2022/23 (so, so much went wrong and there was so much incompetence) and will not have a theoretical conversation about what chemo would entail this time to reassure me. I am being stonewalled by oncology. My breast consultant has told me that because I will not have surgery she is effectively discharging me - I'm not having surgery because having a lumpectomy will mean that the cancer will return again (confirmed as v likely) and they will only take the effected breast if I opt for a mastectomy but my breasts weigh 5kg each. I have quite severe post chemo joint pain & my spine is damaged so being left with one 5kg breast will cause me agony so isn't an option for me. Breast consultant agrees that a double mastectomy would be best but 'rules' do not allow for both to be removed at the same time and the wait for surgery to reconstruct/reduce/remove the healthy breast is currently at 3.5yrs
I have CPTSD and have had therapy which hasn't help me deal with the various traumas that I suffered at the hands of oncology. According to my last CT scan in June, my cancer is stable and not spreading. So having made the decision to do nothing, I've been 'dumped' by breast care and oncology will not return my messages or see me at all. On one hand I can see why but on the other I need to know how my cancer is progressing so that I can judge how much time I have while I continue to work etc. I have been refused any further scanning unless there's a significant change but no one will tell me what is considered to be a significant change.
So, what I need to know is how do I know if there's a significant change and what support should I be able to get from my hospital going forward? If I have no consultant, how will I know when I have 12months or less left and who will sign my PIP certificate etc? The situation isn't helped by having a useless GP surgery who can't enlighten me either. Please could someone advise me without judgement. Thank you in advance
