I've finally had my post-mastectomy results appointment and it's been a lot to take in. But also it's left a lot of unknowns.
What I know:
My invasive lobular cancer was 7cm in size (combined size of 2 tumours)
One sentinel node was diseased and one was fine (I wasn't aware they took two - it wasn't mentioned in the letter to my GP. But I'm glad they did).
I will need radiation to the chest wall.
They would like me to also have radiation to the axillary nodes, but not to have them surgically cleared. He thinks I'm a good candidate for that - whatever that implies. He said there's less risk of lymphodema than with surgery, but couldn't answer my questions about specific side effects or longer term consequences of that.
A sample of my mastectomy tissue is being sent to America for testing (I'm in the UK) - I *think* to find out whether I'll benefit from chemotherapy. The surgeon acknowledged that given I have several chronic health problems, chemo may not be a good idea (I may not choose to have chemo, but I'll decide once I meet the oncologist and they have all the information, and we can weigh up the statistics) Unfortunately neither my partner or I could remember what he called the American test, maybe you guys would know it? I think it's to estimate whether there's a low, medium or high risk of recurrence. Does that sound like I've understood it correctly? Does it sound familiar?
I need to have a CT scan to check for spread. Awaiting that appointment.
And a bone scan.
The surgeon said it'll be 4 weeks for my oncologist appointment to come through. (However, they also said my post-surgery results would take 3-4 weeks and they actually took 6 weeks, so I'm not holding my breath)
I forgot to ask what grade the cancer was or whether they've revised which stage they diagnosed it as being prior to surgery. Before surgery they said it was Stage II.
The nurses attempted to fit me for a silicon prosthesis (the softie makes me look very lop-sided as I'm big busted and I would really like to be able to stop wearing huge men's checked shirts to try and disguise it!) Alas, the hospital didn't have a silicon prosth big enough in stock, but will order in a couple of bigger sizes for me to try soon. So that at least is something to look forward to.
I still have seroma but as they weren't able to drain it 4 weeks ago and the pain from it is marginally better than it was, they'll leave it be for now and maybe try again to drain it if necessary later on. They said it'll probably just fill up again so might not be worth the pain of sticking a needle in again.
So much to do and to think about. Does anyone have any advice, please?
How do you cope with this stage of the game? It's like there's no end in sight.
5/21/2021, ILC, Right, 6cm+, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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