Haven’t posted for a while as I’m not much further forward, but thought I ought to update you lovely ladies who have taken the time to reply to me.
The hospital I was at has referred me to where they do the reconstruction I want (DIEP flap) and the oncolpastic surgeon agreed to do it (with no mention of BMI). She and her team listened to me and why I had chosen this op and have been the first of the medical profession to treat me as an intelligent whole human being and not a disease.
However, the breast surgeons are refusing to do the double MX I want. They are prepared to take away up to half of the healthy breast if I have the huge lumpectomy they would do on the other side, so why wouldn’t they agree to take the rest? They would throw away my tummy tissue (which poses no threat to me), but they won’t throw away breast tissue which has the potential to be a threat in the future.
I’m meeting with the oncoplastic surgeon this afternoon to discuss where we go from here seeing as the breast surgeons seem to hold power over what I do with my body and can dictate how I should look and feel. She said she thinks they are acting unreasonably.
Has anyone else managed to get them to agree to a double MX? I have a large combined area of multi focal breast cancer.Only just managing to hang on to my sanity - biopsy 12/12/17, diagnosis 21/12/17, breach date 16/01/18 and the cancer is still inside me left to do it’s own thing!
Well, I have at long last got some progress. Still no date for the main op, but I am having sentinel lymph nodes done on Monday. I have a bad needle phobia and am dreading the injections for the radioactive stuff and the dye, but it will be the waiting for results again that will be worse, I think. Any advice on what to expect and how long to take off work gratefully received. I’ll know I’ll be taking those lovely tough knickers you sent me, Helena. I get the feeling this is when I am going to really start needing them.
It really is a wonder any of us remain sane after all this!
First day after lymph node biopsy. I’ve got a drain in! Wasn’t expecting that. It’s got to stay for 2 weeks. I’m obviously a bit sore and despite the drain I’ve got a lump under my arm. Feeling better than I expected though. Three taken out and praying that the results, which I get 2 days before my birthday are a better present than the one I got 4 days before Christmas.
For ladies who haven’t had this done yet, from someone who is such a baby, needle phobe and who was so scared going to the hospital, they were brilliant with me. I had found the 4 biopsies I had in December very painful and traumatic. The needles for that had terrified me of the radioactive injection for this operation. I was so worked up, but it was nothing. I hardly felt it! It was so much less than a blood test or inoculation. I felt so silly for getting so worked up. It really was nothing.
Then, the anaesthetist, who was an angel, gave me gas to put me out before the cannula etc., so I didn’t know anything about the needles. I told her I loved her before the gas and when I was coming round! Knowing that this can be done will make me less fearful for the next one. If you’re like me with needles and they don’t tell you about this, ask them. It made it much less of an ordeal. The anaesthetist had told me she was going to do this when she saw me on the ward. Yes, I was still nervous, I was having an operation, but I wasn’t hyperventilating and close to tears as I would normally (or abnormally) have been. Oh and the nurses on the ward put some numbing cream on the back of both my hands, just in case. They were all brilliant with a complete whoos and I made sure I told them.
Just the dreaded long wait again now for results.
This wait’s nearly over. I find out whether it’s had a party in there and sent out any messengers or whether it’s stayed put. It’s has so long to to it’s own thing since the first biopsy on 12th December (13 weeks ago). I was told then that nodes were clear (ultra sound and fine needle biopsy). Really scared that they’ve left me too long without treatment and things have escalated. I need that op date to get the 4 areas out of me! Has anyone else had to wait this long?
I’m told that I now have a 35mm cancer in my sentinel node the other 5 removed were clear. Talk of doing a level 1 clearance when they do mastectomy and reconstruction. Has anyone else had this diagnosis with lymph nodes and if so, what was done for them and have they had any problems with lymphoedema or anything else.
I’m now on Letrozole (seem OK so far but only 6 days) and am still waiting for a date to get it out of me. Has anyone else waited this long (12 December)?
Feeling really tired and like my brain isn’t fully functioning. I think it’s gone through so much this last few weeks it could really do with a rest! I don’t know how I feel other than still really scared of everything there could be in front of me.
That’s a very long time to wait . I thought 3 weeks was an eternity ! At least you can now prepare yourself practically and emotionally as you have a date to work to towards .