Hello. I was diagnosed on 18th May (stage 1, grade 2 IDC two tumours in the same breast).
Surgeon recommended mastectomy and I had breast MRI nearly 2 weeks ago now. I’ve just returned from my plastics about a DIEP flap (which feels like the right choice for me), and I just feel really gloomy.
I don’t know what I was expecting, but I just feel like a (substandard) ‘body’ following it. Scars from previous surgeries, muscles like a broken guitar and crap skin covered in stretch marks. The plastic surgeon wasn’t unpleasant, just matter of fact…but I just feel uncared for I guess.
I still don’t know what treatment will be needed following surgery (or indeed if the whole plan will be completely different based on the MRI!!) I am back in clinic with the breast surgeon next Monday but feel like I’m just dangling in limbo. 12 days on I would hope they would say if the diagnosis looks vastly different!? It seems like nothing is planned right now. Surely it I am to have the the mastectomy and DIEP (needing both surgeons and CT in advance) things need to be moved on/booked in.
This limbo is excruciating. Any others’ experiences of post-MRI planning/results?
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Hey @derry1
Sorry to hear you’re feeling a bit stuck at the moment.
If I understand your post correctly, it sounds like your team are awaiting the report on the MRI findings before committing to a course of action. It is common to have a loose plan in place that depends on the results of another test coming through and I know this can be absolute torture as my own journey has itself been very twisty!
Your team is likely making sure they have all the information they need prior to starting treatment and while time is an important factor in cancer treatment, it is much more important that they do this correctly.
Fingers crossed you get a clearer picture at your appointment next Monday and I hope this helps in the meantime. x
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Hi @derry1
I really feel for you as I also had a limbo stage and it wasn’t pleasant. I was booked in for surgery, then had a MRI and something else showed up so that was cancelled. Surgery booked again then there was disagreement at MDT about the biopsy and the surgeon’s plan to remove that bit too so cancelled again. Lots more waiting while an expert opinion was sought, back to MDT… Took seven weeks in the end and was horrible, there seemed to be no agreement on the plan and I felt like I was being forgotten at times when nothing seemed to be happening.
But, now I look back I am grateful all this happened and know I definitely was not forgotten. It’s so difficult at the time when you just want to get on with it, but I know now that my team were doing everything possible to make sure I had the right surgery and best possible outcomes.
I hope things are clearer at your next appointment but please try to hold onto that your team are doing everything to make sure your plan is the right one for you. x
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The waiting is truly the worst bit as you want to prepare but don’t know what you’re doing yet.
My advice is to eat well, exercise and get outside as much as possible so you’re fit and well for you treatment when they decide what it is.
Thank you so much to each of you for taking the time to reply.
I know that there is so much unknown still (and that ultimately pathology will be needed post surgery for planning).
I am super anxious because I haven’t been feeling at my best physically in recent weeks with coughing and chest tightness. So not knowing what the MRI showed is driving me crazy. Keep thinking about surgery being off the table completely and they are going to find it’s metastatic. I am about to head for a chest X-ray this morning that my GP ordered.
Well hopefully that’s a quick fix and totally unrelated
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