Feeling I will be mutiilated

AlisonL

Hi.

I am booked to have mastectomy of left breast. Trouble is, I have already lost uterus, ovaries and cervix (hysterectomy) but also my clitoris, labia and clitoral hood - this is due to a horrid little disease called lichen sclerosis that can atrophy one's genitals.

So my breasts are my only remaining feminine bits left! I can't stand the thought of yet more of my femininity being chopped away. I am not suitable for body tissue reconstruction (because of cardiac problems)

My rather horrible consultant keeps telling me that my breasts will not match, will never match even if I have reconstruction on the right (unaffected) breast further down the line. He says they will not ever look normal, will be distorted etc. I know he has to manage expectations, but the man is a right downer.

Without wishing to sound melodramatic, I am currently feeling suicidal about the whole thing. There are other less than wonderful things happening in my life contributing to this. but the prospect of a further mutilated body - the lichen sclerosis already makes me feel like a freak - seems unbearable. I am being supported by a good mental health team, so whuiole general messages of suport are always welcome, that's not what I am posting for.

What would help tremendously is if anyone would be kind enough to take the time to post about success stories of happy reconstructions

dtad

Alison...Im so sorry you feel this way. Since you already have professional mental health I won't get into that. However I urge you to see another plastic surgeon, preferably at a university based teaching hospital. I can help you find one if you would like. Just private message me with your details. You need an optimistic doc that can reassure you not make you feel worse. Im sure you can find someone that can make you look and feel better. Good luck. Im here if you need me......

pupmom

There are many stories of successful reconstruction here, but I thought you said you couldn't have reconstruction.? Or can you have an implant, but not DIEP? Not clear from your post.

You definitely should not be seeing any bc professional who makes you feel worse! Get another consultant asap! Wishing you the best.

Molly50

Alison, can you please fill in your diagnosis and make it public? That makes it easier for people to help you or relate to your situation. Are you not eligible for breast conservation surgery?

StaceySue2U

Alison I understand what you're saying. I didn't have the lichen sclerosis so I still have my external lady bits but the ovaries, uterus, cervix are gone and now I've had a mastectomy. It does make me feel a little androgenous. That being said, I know these tissue expanders are only temporary and my implants will look more real and I can have nipple tattoos. I've seen lots and lots of pictures of very successful reconstruction. You're still a woman. I've started dressing more feminine, paying more attention to my hair and makeup. That helps.

farmerlucy

Check out this site http://breastfree.org/

I was wavering between no recon and recon and this site was of immense help to me.

Also check out the Flat and Fabulous ladies at https://community.breastcancer.org/forum/82/topics...

In the end I did recon because my DH and DD talked me into it. Not a good reason.

I fell into a terrible black PTSD-like place, I felt like I was all alone and terrified on a raft in the middle of the ocean. I'm glad you have mental health people watching out for it. Here is a recent blog about PTSD and BC - it is very common.

https://community.breastcancer.org/forum/90/topics...

funthing42

Sorry for your difficult situation and descion.

I'm flat not by choice. I wanted breast reconstruction but reccurrence skin mets to that area made me a candidate for radiation x 2.

How long was your other dx of sclerosis. Devastating as it was you got thru it ? Everyone has different coping mechanisms.

Mine suck so no advice here. Just a big hug. Your heart and love for life hopefully will drive a descion.

Reconstruction is amazing many options.

barbe1958

You are feeling totally normal for what you are facing!! I hope your team has told you that. I had both breasts removed so I wouldn't have further surgeries and have been dead flat for 7 1/2 years. I have been VERY happy flat and even go out in t-shirts! Now when I see big breasted women my brain goes "mooooooo". (Sorry ladies!)

I've had a hysterectomy as well, but no one knows that looking at me. You still have a vagina for sex? Though you'd miss out on SOME of the sensual parts of sex I guess. I asked my surgeon where all those wonderful nerves from my breasts went when he cut them and he said to "have fun looking for them!" LOL

So my point is, I'm posting about a happy, very happy NON-reconstruction. I was big breasted before and even had a reduction about 5 years before cancer. My arthritis in my neck was horrid and now it's so much better!! (I had spurs in my neck that were so large I was choking on food.)

So, have you considered NO breasts?