Wrongly diagnosed, had mastectomy and PAP flap operation
I'm in constant pain in my leg, I was diagnosed after a routine mammogram and after 3 biopsies told the best option for me was a mastectomy, I was told that having my own tissue was the superior way to go, the rolls royce of mastectomies. I was told i was a ticking time bomb and this was the best option. ie; preferred to watch and wait.
After the operation i was told by my surgeon that what i had was insignificant and i could have got away with not having the operation. I wish to god i'd never gone for that initial mammogram. I spend every day of my life in pain now, standing is difficult, walking hard work. Sometimes i just wish i'd died in the operation, but i have two lovely children, so know i must keep going. I feel like such a fool, i've always been so careful with who i trust, but I was terrified and thought i was going to die. Just want my leg back. My new breast hurts from time to time, i get stabbing pains, but i can cope with that, it's my leg. They've taken my life. This was supposedly one of the best hospitals in London. I was diagnosed with DCIS, get a second opinion if you are reading this and in my position.
Comments
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Hi @shixpap, I’m so sorry to hear about your leg pain. The fact that the surgery which caused it could have been avoided really stings. I also wish that I could go back I time and skip the radiation that injured my lungs and has upended my life. It was touch and go to see if I would survive. I’m happy I did but now I have to live like I’m immunocompromised which really limits what I can do. When I asked my pulmonologist why I was one of the unlucky one in ten thousand with this side effect he told me a lung cancer radiologist (as opposed to a breast cancer RO) would have seen the red flags in my medical history (upper GI bleed, Barrett’s esophagus) and warned against rads.
I understand your anger as I also felt it but I have come to terms with mine. I was a maths teacher and my pulmo told me a story with the punchline “Math is magic, medicine is not” which has become my mantra. My daughter is a post surgical PA at one of the top cancer hospitals in the US and frequently has patients who have been misdiagnosed, given incorrect treatments or suffered rare treatment side effects. She acknowledges that this is horrible but also points out that the harm was not intentional. Surgery, chemo and radiation are toxic treatments meant to eradicate cancer. Those rare side effects mentioned in the fine print of the permission to treat forms occasionally happen.
Since you can’t undo the damage try to get as much help as possible to minimize the pain and improve your functioning. In addition to ortho try consulting a physical medicine and rehabilitation doctor and a pain specialist. Even though the cause of your injury is different they treat patients in similar situations due to trauma.
I agree with your warning to seek a second opinion but it’s possible you would have received the same advice based on your biopsies and imaging. You are not a fool, just one of the unlucky ones. For your sake and your childrens’ I hope you can get help to improve your mobility. Hugs for you.
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