Following on from my post about my wound necrosis and manuka honey dressing it was my first follow up today. It did not look as good as expected and there was a separate area that had necrosis in. The nurse was trying to be positive saying it has to look worse before it gets better. When the consultant looked she was asking me how I felt and because systemically I’m well she decided to continue as she said I don’t know what we would do if we took you back to theatre. My own consultant is away for two weeks so she is seeing me in his absence.
My husband took a photo, it is awful. I am in agony tonight after the new dressing which I hadn’t really been in before. The cons had said I had to be very very patient. When I asked the nurse if we were talking in terms of weeks instead of days she said it’s fair to say we’re talking in months.
Now please don’t shoot me down for this but I am not bothered whether I keep my boob or not. I was offered the choice of a WLE or therapeutic mammoplasty and it all happened so quickly I went with the mammoplasty as he said they would do the other side to match (12 months after treatment) and it gave a better chance of clearer margins. Having gone through this there is no way whatsoever I would choose to have the other side done. I am aware it is a very common issue just hoped it wouldn’t be a problem.
I have a 23 year old severe disabled son who at the minute has hubby and carers looking after him. But I don’t want to be in this pain and unable to do anything else the dressing falls off for the next few months. I am thinking of asking when I next have the dressing changed on Thursday if they could just do a bilateral mastectomy and hopefully that would be the end surgically. Am I mad? Or just not thinking straight because I’m in pain? I know with chemo I’m going to have to take my temperature daily but I have been told I also have to do that now and go straight to a and even if it goes up above 37.5*
Honest thoughts please ladies xxx
Hey Bottyboo - so, so, sorry you’re going through so much pain and suffering, sounds a complete nightmare. :( Really hope the wound starts to improve soon, hopefully they’ve given you some industrial strength painkillers to ease things a little.
i had a single mastectomy (I had no choice after MRI scan - tiny boobs & besides tumour, had some DCIS. I would have chosen this option anyway). I also haven’t had reconstruction, I doubt I will. My biggest regret, right now, is that I didn’t have a double MX - I have no trust in my remaining boob! My symptoms were severe continuous discomfort on both sides, tumour side was marginally worse (didn’t know I had a lump) - ‘good boob’ still hurts, despite hormone therapy.
Anyway, where I’m coming from is - yes I would have it done. However, at the start of this, saving your breast was obvs important to you, if you were deciding between those two options (no MX considered at that time). So maybe you do need to reconsider it, when the pain has subsided and your boob is healthier. However, definitely worth mentioning it at your appointment and seeing what your surgeons thoughts are too.
I probably haven’t helped at all but definitely wanted to reply!
The very gentlest of hugs, on your good side only. :)
xx
Thank you Seren you have helped enormously. I think they didn’t suggest mx due to size and no need but my instinct initially was to take both off completely. I did mention this to the BCN who was lovely but I followed it up with I was worried I was being irrational as I didn’t want her to think I was Barking! She laughed and said yes there’s no need for that so I didn’t pursue it as just trusted them. When they said this was a common problem and they knew what to do about it 1. I thought it was just one of those things they have to say like infection and dvt
2. They didn’t say that what they had to do was going to take months of not being able to move my arm and forced to sleep on my back etc.
I have managed to get an appointment with my own GP tonight, if you remember my original post he’s amazing so I know he’ll give me solid medical advice before I go for my results tomorrow. The bizarre thought running through my head is that I’m going through all this wondering etc and researching and yet I could get there tomorrow and there’s no clear margins anyway so I’d have no choice.
Thank you again though love and hugs xx
Is that the test to help you decide about your chemo due to recurrence risk? I haven’t seen an onc yet.
When I drag myself out of bed every morning I used to fantasise about a lie in. Now I can’t wait till I can drag myself out at early o’clock for a reason other than insomnia.
So we’ll both be getting results tomorrow!!
Good luck, please let me know how you get on xxx
What time is your appointment Seren? Mines not until 5.30 seems a long day xxxx
Hi. Hmm see what you mean. I’m in a bit of the same quandary. My surgery results were good as they had good clear margins had gone to grade three and grown to 20mm but out of 14 lymph nodes only one was affected. The quandary is my GPS is adamant they would offer chemo cos of grade and lymph node. However the hospital said they’ve already made me an appointment with the oncologist for next week as I’m in the ‘chemo might be an advantage’ group. They said I have a 4-5% chance of recurrence within five years without it which is low but not low enough for them to say definitely no advantage so I’ve got to go away and think about it and talk to onc next week. However I have a severely disabled son who is totally dependent on us 24 hours a day plus two other kids so I’m going to throw everything at this I can. I know chemo isn’t to be taken lightly and it’s still no guarantee but I would rather take everything than, heaven forbid, it come back and I’d regret not going the whole hog. If it still comes back there was nothing else I could have done.
Good luck with your decision too let me know what you decide xx
Hi Bottyboo, sorry you are struggling with the wound and I fully understand the thought processes behind the me, however as seren has said maybe this is something to think about when you are not in as much pain, whatever the outcome it needs to be right for you.
Good news that you don’t need more surgery currently but another brain ache re: chemo. Sending hugs and hope things improved soon x