On my own post mastectomy with immediate implant reconstruction

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I really dont know where to begin. I was diagnosed after a routine mammogram in August 2022. Following biopsies the initial lumpectomy went out of the window as a further tumour was located in the same breast. More investigations for spread, sentinel node and i eventually had a left mastectomy November 29 with implant reconstruction. Graded 2 ER+ PR- infiltrated with no spread to sentinel nodes, no radio was required. I was in hospital for three days, two drains, one removed before I went home with one in situ. I had pain from day two controlled with tramadol, paracetamol and anti inflammatory drugs. I was not given correct drugs to go home with and I was in agony for three days, my GP refused to come out to me on a home visit. Thank god for a neighbour who took tramadol/paracetamol for her arthritis…I took those until the hospital was contacted, all hell broke loose and i was made to feel like it was all my problem. Blood tests showed respiratory alkalosis as i was in so much pain. The T wound started to open and I kept sending photos to the hospital helpline…but i didn’t have a  fever…no, it was sub 36! On Christmas Day the wound opened and i required antibiotics and 4 weeks of daily dressings. In between during a one moth post op visit the surgeon informs me that ONCOTYPE DX is required due to some question of whether chemo would be required. The 10 day results window turned into three weeks! The days were rolling by and I was feeling very anxious. I had constant pain laterally, I could feel the side of the implant on my arm, tightness in my left chest, difficulty breathing at times, sleep 3/4 hours only. I asked if the implant could be reduced as I thought it was badly placed and too big “its the finished article” spat the surgeon, you dont need chemo just hormone therapy….you will need AI’s. I am riddled with arthritis, particularly in my spine and hands. I asked which one…he said “you choose!” ….I was beyond shocked and said, none, i will try Tamoxifen first. He bundled me out of the door because I asked for a copy of my medical file. He gave me a 12 moth prescription and said he would see me in 6 months.

Sorry for the overload…..

In the medical file which I eventually received, there was a ganglion in the right breast (biopsy negative which I knew about) but it stated a repeat echo would be required due to “suspect shape in 6 month time”. No further mention was made about my right breast. In fact in errors the file discussed my TWO right breasts, both of which had cancerous tumours.

In the operation notes it stated that THREE implants had been used..is this normal? 

Nearly 5 months later, I can feel the implant constantly, still have very bad sleep, I am beyond tired, …. The surgeon has informed me that since I have requested my medical file he is no longer following my care….

My GP just thinks I should take anti depressive medicine.

I am a single woman. I live in France. I am self employed. I am lost. I have found someone who will perform an echo on my  left breast and  also the right breast (two month late) and i am going to see a plastic surgeon immediately afterwards.

I am strugging because I dont think I should have to fight like this…legally the surgeon cannot refuse to treat me…he must pass me to someone else…he didn’t…I was told i had to find my own treatment team…

  • Oh  

    This sounds so awful - I do feel for you.  I don't know anything regarding mastectomy and reconstruction as I had a lumpectomy - and I am in the UK. 

    I did have a look on the Macmillan site and found that you can ring them from abroad on this number: +44 207 091 2230.  

    They can't advise on healthcare abroad, but at least you might get some more knowledge about what should normally happen if you were in the UK.

    Sorry I can't help more, but if you're able to give them a ring, you might get a little more information and at least some mental support as your surgeon / doctor don't sound at all supportive!

    Kindest wishes, Lesley

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  • Try contacting PALS at the hospital you were treated at and they will look into your treatment both medically and administratively.

    Good luck x