So I replied to someone’s post but thought I would start a new thread for my diagnosis.
Well, my story is crazy, it changes every time I see a consultant.
Originally it was lumpectomy and node removal (I have a lump under my arm pit). So I went on holiday being told I will have the lumpectomy when I get back followed by chemo and radiotherapy.
Came back off holiday to be advised that they cannot find the origin of the breast cancer in my breast (sent to Addenbrooks for a specialist MRI biopsy) so am now being rushed to chemo. When meeting my oncologist for the first time he casually said that I will probably have a double mastectomy anyway. But that they will test my boobs but may never find anything! This freaked me out so called my BCN and she said to speak to the oncology nurse as I am under them now.
So here I am halfway through chemo with no actual plan, no idea what reconstruction is or if I’ll keep my nipples. Can’t call my BCN as she doesn’t want to know. I have no family history as my mother died young and they can’t send my boobies off for testing in the US for the reoccurrence rate as chemo will have destroyed any chance of that.
Apparently my cancer is called occult and we are extremely rare! I can’t find anyone else who is going through this and every time I see a nurse/consultant, they say oh I’ve been reading up on you, everybody is talking about your case. If I wasn’t put on Prozac after being diagnosed I think I would have crashed and burned by now.
I wonder if I’m such a rare case why haven’t I been referred to the Marsden.
Any advice gratefully received. I am seeing my oncologist tomorrow, I assume it’s for the recent ultrasound I had on my node which has gone down, but who knows.
Not sure what to ask, as I have so many questions but who do I ask???
I’m so sorry to hear of your plight and have to say that the way you’re being treated is outrageous. However, it also kind of makes sense. During my primary treatment in 2019, I was introduced to a much-needed BCN who was lovely, introduced me to the chemo suites, took my mental health condition into consideration and made sure that everything that could make my experience easier was done. Then I didn’t see her again. After a couple of chemo treatments, I was seen by the adjuvant therapies nurse who told me I didn’t need to see a BCN as I had her now. It seems there is some sort of boundary that can’t be crossed. On chemo? You use the oncology nurse!
I’ve since been told this is nonsense but, for me at least, it was fact. Once chemo was over, the adjuvant therapies (ie oncology) nurse never made contact again. Job done. However, my lovely BCN was still there to pick up the pieces, answer all my questions and reassure me when I emailed her.
So I’d say, ask tomorrow who is there to support you? Is there an adjuvant therapies nurse? If so, can you be introduced please? If not, why does the BCN feel she can’t support you through chemo? There’s obviously some kind of organisational logic (?) behind this. But stand your ground. You appear to be unique and feel isolated and confused. You need support. Tell them in no uncertain terms. It can be hard for some people to assert themselves in the world of oncology but, to be frank, we have to become our own advocates if we are to get our needs met. Sometimes it’s not possible of course and it may be that you just need someone to sit down with you and explain everything since there’s no one else with your type of breast cancer and you’re fed up of being told you’re unique but not being helped!
I speak as someone who has a secondary breast cancer tumour in her medial canthus (close to the eye socket), something none of the oncologists have come across personally - and I’m being watched with academic interest BUT also genuine concern thank god. It’s not nice being unique in this context is it! Write down all your questions and, if you can’t get a word in edgeways, plonk the paper in front of them and ask for answers. You deserve them. But remember, once heard, things can’t be unheard so only ask the questions you really want answers to at this stage. Asking for a prognosis can be disastrous because it all stems from statistics and we’re humans not statistics! Good luck for tomorrow,