Surgeon doing the opposite of everything I say

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I have had a torrid time since diagnosis. I have a triple negative, Stage 3 ductal carcinoma. It's in 2 lymph nodes as well. I was diagnosed in July, started chemo, and had the worst allergic reaction anyone had ever seen. 3 weeks in hospital due to Steven-Johnson Syndrome, 9 weeks no treatment, and had to move hospitals because of how shocking they were.

I have had a further 10 rounds of chemo, with minimal response. They want to go to surgery now before doing EC chemo then Radiotherapy. The only things I said to the surgeon were I would not be flat, needed to be even both sides due to other medical conditions (I have Ehlers danlos syndrome and a few other things!), and I was worried about lymphodema. To put into context, I'm a 30JJ!

The surgeon said on Friday that she will do a single flat mastectomy. That's it. Plastic surgeon has agreed to DIEP flap, but they won't do it because it can't be scheduled until Feb.

I'm honestly so upset, angry, pissed off, etc. Head in a dark space atm, as the surgeon has just ignored me. I cannot have a single flat mastectomy, as the physical and psychological side effects would be huge.

What do I do?

Londonmumof2 over 1 year ago

I guess that the issue is two surgeons and a team are required. You haven't responded to the first chemo (weekly paclitaxel?) So I'm guessing they don't want to delay things. If it's the only hospital who do it within a reasonable distance would you consider contacting PALS and stress the urgency? If a complain if made they need to justify their side of things in writing, so may reconsider....

“Remember to look up at the stars and not down at your feet. Stephen Hawking,

Sb_01 over 1 year ago in reply to Londonmumof2

I was severely allergic to the Paclitaxel. The new hospital changed me to weekly Nab-paxlitaxel and Carboplatin, but the nab-paxlitaxel gave me really bad neuropathy, so they had to reduce the dose.

It isn't a case of they can't do the surgery. It's just them saying that is what they want to do, and so that's what they will do! They just don't seem to be listening to me as the patient!

A single flat closure would be like someone else walking around with a watermelon in a bag on one shoulder 24/7. That would be bad enough for the best person, but the sheer pain that will leave me in with my existing conditions is just unfathomable. And that's even before any further treatment, and ignoring the psychological aspect of being 36, single, no kids, and looking like a lop sided monster.

Mibby over 1 year ago in reply to Sb_01

I feel for you, being large breasted myself I get exactly what you say about one flat, one large. My surgeon offered therapeutic mammoplasty because in her words, you are rather Pendular. She even asked me what size I’d like to be. She then went on to say if after the surgery it transpires you need a mastectomy at least you will end up with small breasts and shoulder and back relief. She was spot on. I had to have a single mastectomy in the end and decided to go flat. I now use a prosthesis and I’m very happy with my small breasts.

I realise it is slightly different for you because your first option is a single mastectomy. However, if I were you I would appeal to your surgeon for a reduction on the remaining breast and if no joy, ask for a second opinion. You are entitled to a second opinion.

I I wish you well and hope you get a more satisfactory plan. Take care x

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Surgeon doing the opposite of everything I say