Hello, I'm So Confused

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Hello everyone, I'm so confused, can anyone shed some light please? On Nov. 4th my consultant said I needed my left breast off and that I have many choices. I could go with /without implants or with/without reconstruction. I could also opt for double mastectomy with/without implants or with/without reconstruction.  I asked about liklihood of cancer in other breast and he said it was highly unlikely. As I have a scoliosis, I am very aware of my lack of symmetry and I felt that to have a double mastectomy with implants would give me the best outcome. I rang my breast care nurse about 5 days later with my descision.

Yesterdays consultation started with the consultant saying "he was sorry if he had misled me" but the NHS would not permit my preferred choice as it did not allow the unaffected breast to have an implant or reconstruction. It would allow me to be reduced to flat. What on earth is the rationale here? It seems so inhumane. I am so bewildered, my choice felt logical and thought through carefully. Can anyone shed some light please? Sorry for the long wailing.

  • private screening not as good

    How would he know? Did he check every private screening service in the UK? You don't need his permission, go private if you like.

  • I have a rib condition called pectus carninatum, which means my breasts are further apart than most peoples. I was concerned about symmetry but ended up with a lumpectomy and mammoplasty on one breast, an implant reconstruction of mastectomy on the other. The plan is that I have an expandable implant so that when it heals they can fill it to match. They can over fill the implant fir a few weeks so that when it is deflated a little it droops to match. I’ve seen photos so I know what’s possible and I was impressed at the results. And in the meantime I’m wearing bras with pockets that I can put partial prostheses in to match them up. A good plastic surgeon can get you a great result even with different treatments of each side

  • Thank you so much for your positivity Anabrock.

  • Hi again. I echo what Anabrock has said. I had exactly the same, but without the exapndable aspect but that was not because of a rib condition but because of the cancers I had in both. I thought I was asking for something the Surgeon could not do, but she surprised herself I think, because she was able to do it, as was worried about nipple in mammoplasty. She removed one nipple (which had no cancer, as it turned out) and took off one and sewed it back again on mammoplasty. Only problem I have had on that side is nipple didn't like the radiotherapy at all, and is still playing up a bit, shedding skin and growing new skin. Maybe you need to ask him why he can't do what he said originally he could do. It is like Russian roulette all this. I don't think they want to do double mastectomies, when one has no cancer in it because they think women won't be happy - that's why reconstruction is offered. If you really want this you would have to persuade hard. The accent is on preservation of what you have these days.  I was offered a tattooed nipple for God's sake but I really don't want to go through that.

  • There is a nipple tattooist in the hospital where I go and she has said she can fix my remaining nipple, which is damaged, with some 3D tattooing to look more even, and then match it with a 3D nipple tattoo on the other side. As I’ve little feeling now it shouldn’t hurt. Everyone tells me the 3D is so good there is no point in having a surgical nipple made. She also tattoos brows in women who’ve lost hair through chemo or alopecia. And can tattoo prominent scars in your skin colour. 

  • It's the hurting that worries me, but I would love to hear how you get on if you decide to have that. I'm in no rush but open to suggestions. I have a check up in December.

  • You can use EMLA cream if you still have sensation. You can get it from the chemist, online or on prescription 

  • That's useful to know. I hadn't heard of that before. Thank you. Some I can feel a little and some I can't.