Hi JLS, what an awful situation to be in. It sounds as if there’s been a lot of confusion about the best way to take forward your treatment/reconstruction. It would appear that you have been given poor advice and very little in the way of explanation. Perhaps it is now time to make a complaint to your local NHS? What advice have you had from your GP about this situation? I do hope you get a better resolution to this difficult situation.
I was surprised and sorry to hear of your experience, particularly your hospitals current response to you re reconstruction. Thankfully I didn't experience any of these sorts of issues during my treatment and from my 5 years posting on the forum would like to think this is extremely rare.
NHS treatment is supposed to follow NICE guidelines re the treatments offered. (It's NICE who also decide which drugs can be offered by the NHS for different conditions). Please see section 1.5 in the link below re reconstruction after breast cancer,
The guidance still says reconstruction should be offered, although there is a line re options saying
"These will vary depending on personal preferences (such as breast size desired), current body shape, other health conditions, previous operations and lifestyle factors (such as hobbies).
Not all hospitals or surgeons can offer all procedures. Travel to a different hospital may be needed for a specific option."
I'd suggest you give the Breast Cancer Care line a call and ask if they can suggest the best approach to take.
Plus try contacting the hospital's Patient Advice and Liaison Service, usually referred to as the PALS team (contact details should be on the hospitals website), mention the NICE guidance re reconstruction, make it clear reconstruction is part of your breast cancer treatment, politely ask the hospital to reconsider giving you reconstruction (mention any other health issues being wonky may be causing you), and if they say no, ask if you can be referred to another hospital who can genuinely offer it. I know it may be a pain to have reconstruction in a different hospital, since it may be further away and less consistency of staff/treatment team etc, however if it gets it done....
I really do feel for you and think it's worth pursuing the issue. I was extremely wonky for ages, had a reduction 2.5 years after diagnosis/initial treatment, needed another which happened at 3.5 years and for me it made a lot of difference re upper back/shoulder problems due to being so wonky, comfort, appearance, let alone the rest! I would be alarmed to think of women who go through breast cancer being denied reconstruction, particularly when the guidance still says it should be offered!
I hope the above helps. Please post again re how you get on after speaking to Breast Cancer Care and the PALS team at the hospital, since if you are experiencing this, others may be too, and it just doesn't seem right at all to me.
Beaming supportive vibes to you,
4yrs ago I was diagnosed and began chemo at the end of Oct 15. My oncologist told me I’d have treatment, mastectomy and auxiliary clearance and reconstruction, then radio. My surgeon said, a few months later, that would not be happening, I’d have reconstruction after the mastectomy. The following year I found out I’d not even been put on the waiting list. My surgeon offers me a reduction to my right breast while awaiting reconstruction. Then she changed her mind. I found this out from admin then I rang to chase up the appointment, 6 months later. Last November, I found out by chance, at a lymphedema appt that the waiting lists for ops had been halted due to the back log. This summer I was asked to see the plastic surgeon who asked me to strip, poked, prodded, weighted and measured, then told me I wouldn’t be getting reconstruction as the GP council has voted to stop all non life saving ops at our hospital!?! So what do I do now???