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2mm DCIS low grade

subedo23
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I had no symptoms, I went for a routine mammogram at 49, called back to hospital after 4 days, where i underwent more mammograms and needle biopsy. 

Then two week wait to be told i had what they considered to be AIDEP, they said they needed another vacuum biopsy. This was even more painful and large. I waited another 2 weeks to be told this was also AIDEP, which they graded as DCIS as there was a mass of 8.5cm, they said i should have a mastectomy, they then referred me to another hospital. Who saw me within 2 weeks and operated within 3, i had a mastectomy with reconstruction from my thighs, i still can't walk properly and am in a lot of pain with my right leg in the night, i can't feel from my the top of my leg at the back to just above my knee, completely numb, my breast is hard and painful at the top. My life stopped, my children are only 12 and 8. I went for results to be told,' you didn't need it done, we found 2mm of low grade dcis, we could have watched and waited, but we didn't know what we were going to find'!

My life is a mess, i can't function, look after my kids, i've put my son in a kids club for the whole summer and my i can't to activities with my daughter. She's had friends over but i can't seem to interact, get back to me. I'm devastated, i don't want my husband to see me naked, if it wasn't for the kids i'd just want to die. I don't know how to get back, my life was great before, i'd given up teaching, had a few odd jobs, i was so happy. I just feel so torn apart and butchered.

Anyone been through similar? I don't know what to do next, feel i should get lawyers involved but just don't have the energy.

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    Sue 

    ypu have been through it bless you hope you atery feeling betters soon xx love Lara xxx

  • Offline in reply to laraj

    That is pretty awful for you ,it should not have happened. I do think getting legal advice will be a good idea though..

    I had double mastectomy last September , hoping for implants this year . I don’t feel happy with my husband seeing me ,although he says it ok ,and makes no difference. I felt pretty good after surgery ,but can imagine it being painful after the reconstruction. Hope you get it sorted and try and be positive,best wishes xxx

  • Offline in reply to rumpelstiltskin

    I also. Fully agree with rumplestilskin to get legal advice xxx 

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    Hi really sorry to hear what you are going through. Can I ask if appropriate which surgeon you had. I'm meant to be having my failed reconstruction removed and having an SGAP reconstruction. But I am really wary of going down this road. I don't know if I can go through with this kind of surgery. I don't know if a legal team would be if benefit, but definitely go through PALS, put it in writing ,and insist on  some answers. Because the breast cancer team could argue they did what was best based on the evidence they had available at the time. One of my tumours was 2.2cm pre surgery. The histology showed 8cm of invasive cancer. I asked how they missed nearly 6cm of cancer and got told - it happens! It does not make this right, but I know how difficult it can be to go up against them. 

    subedo23 said:
    husband

    Please get your GP to refer you to a pain clinic as you shouldn't be left in pain that's affecting your life. Things can  seem a bit more bearable once the pain is under control. I can't let my husband see me either. I am grateful the cancer was taken away but I am struggling with my marriage. 

  • Offline in reply to Hope123

    Thank you everyone for your replies. I will ask to see a pain specialist. 

    I really recommend my plastic surgeon, she obvioulsy wasn't responsible for the fact i didn't need the operation, that was the guys in the MDT meeting. She did a good job, i just find it hard because i didn't need it done, 

    She's lovely. And another doctor, he removed my breast tissue, again no blame for him as i don't think he was part of the team that made the decision. 

    So they did a good job at the hospital, had i need a mastectomy, i'd have been happy. Apart from my leg pain. Not sure what's going on there. I had a seroma, perhaps just takes longer to heal.

    I would imagine a SGAP isn't as painful, as the top of the legs you sit on, you just won't be able to sit back for a while. and it may be painful to lay down. They say it takes four weeks to recover. I'm a very fit, ex art teacher who was very active and healthy. I'm on week 9, i am still not driving and can't walk very far. So it's a long road to recovery, i had a teacher friend who's mother in law had a mastectomy, and my friend just said ' don't go flat, you want a bust. I was scared to just have one boob when i looked in the mirror, i think if they'd taken two it would be different. I don't regret having reconstruction, but obviously regret ever going for a mammogram as there was no need for all of this.

  • Offline in reply to subedo23

    Sue 

    so did you have all this and there was no cancer ? Oh my word xx bless you 

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