21 and High Risk

Sac008

Hey, This is the first time I've posted on this board. I found out that I carried a "mutant gene" when I was 18. Apparantly, my family is one of four known to carry this gene that is associated with three types of cancer (breast, ovarian, and cervical). My mother was diagnosed with breast cancer when she was 28, my aunt when she was 35, and both my grandmother and my other aunt have had preventative surgery soon after my aunt was diagnosed. Our geneticist runs tests regularly on me (being the only remaining female with natural breasts) and I've been told that I have a 95% chance of developing breast cancer by the age of 30. The surgeons and geneticist both advise that I have a mascectomy by age 25 and a full hysterectomy by 30. I am not upset at the fact that I have to give up my breasts, its something that I have known and grown up knowing I would be doing. I would, however, prefer to have the surgery now rather than when I am 25. I saw my family go through the surgery and I would personnaly prefer to have as few people know whats happening as possible.
My main concern with the surgery is recovery time. I am very active, I play roller derby and its my life - its something I refuse to give up and I want to spend as little time off skates as possible. I will be doing the implants for reconstruction, but I have a few questions. I know that they take the entire breast off like concavely so, but do you lose your nipples? Do they reconstruct that? If so, is it the same?
If anyone has had similar expericences maybe you could help me out a bit. Has anyone had this done around my age?

Thanks.

**I'm sorry if I don't use correct terms - I don't mean to be crass...just not quite sure how to explain everything!**

ijl

Hi sweetie,

I think you would want to post to "Breast Recontruction" forum, if you look at the list it is a bit towards the bottom. There you will get all your questions answered.
I am so sorry to hear about your situation. You sound like an amazingly breave and positive young woman.

leaf

I completely agree with inna. You sound like a very brave and positive woman, facing your risk.

I think that for prophylactic mastectomies, there is choice. I think the patient gets at least some if not all the choice in the matter. Nipples do contain breast tissue, and thus do carry some finite risk of breast cancer, but I think that many women who do PBMs do opt to have 'nipple sparing' surgery. If you do want reconstruction, many women prefer skin sparing surgery, so the skin does not have to be stretched to accept the implant/reconstruction. So there are many options.

I have not had any mastectomies, and I am not very knowledgable about them.

There are various methods of reconstruction. I am no expert on any of them, but besides saline and silicone implants (don't know how much silicone is now used), there are reconstructions that use your own tissue. Usually these reconstructions that use your own tissue are done by plastic surgeons who are extremely specialized, and there aren't many experienced surgeons out there that do them. I have heard that most plastic surgeons will recommend the reconstruction that they do, and won't talk much, if any, about other types of reconstruction.

Another website you may want to visit, of women who are in your situation, is the FORCE website. http://www.facingourrisk.org/

You will make the decision that is best for you. I'd definitely visit the Breast Reconstruction forum.

Wishing you the best, and peace of mind!

Methusala

hi,
you say you were 18?? I talked to 2 doctors at Roswell Park about my daughter (16) being genetically tested, and they both said no way. They both insisted i would be hard pressed to find a dr. in this country that would test a teen genetically.
They said to wait til after she's 21, then she could make that decision. And, with careful, continuous screening, she would do well. I thought with my family history they would jump right in to test her, but they said no way.

darkfairy

I had a double mastectomy at 29 - I wanted it at 26 but was told I was "too young". Mine isn't for genetic, I have other risk factors. I had a skin-sparing mastectomy with implant reconstruction and kept my nipples. This means they kept all my skin, just scooped out the breast tissue behind it (I still have 3mm of breast tissue just behind the skin so still a tiny risk), lifted up my chest wall and put the implants underneath and then stitched me back up again. Because I'm small-busted, I was able to have fixed volume silicone implants straight away with no need for expansion. This means I don't have to have another operation to exchange the expander implants to permanent ones. My incisions are in a different place from most prophylatic cases because I was having tumours removed.

I know some women decide to have their nipples removed - by keeping them, you have a slightly higher risk of bc than if you have them removed and there is also a risk of the blood supply dying during the op so you lose them anyway. There is a much lower risk of this in younger women, particularly if you're fit and active and don't smoke. Basically, the surgeon scoops all the tissue away from the back of the nipple before replacing it. You're left with the veins and blood supply still attached but no tissue. Some surgeons like to cut around the nipple, mine left mine attached to the rest of the skin flap while he removed the tissue. If you lose a nipple or your surgeon recommends you have them removed, there are techniques to reconstruct it. This involves making little incisions and twisting the tissue round to form a point, then tattooing (under a local anaesthetic) to make them "nipple coloured".

In terms of activity, I started on basic physiotherapy 3 days after the operation - I was in hospital for a week. By about 10 days post-op, I could pretty much raise my arms right above my head. I wasn't allowed to carry anything or lift for 6 weeks post op but once that was over, I was given the all-clear to do what I liked, which included swimming (but I haven't been yet!) 

Choosing implant only means you don't risk disability, which you can get particularly with LD recons. This was particularly important to me as it seems to be for you. Although I am still quite tired from the operation and I don't quite have my full strength back, there isn't really anything that I can't do.

Few things to consider: you "new" breasts will look different from you old ones. My implants don't move at all - they're just there, almost stuck onto my chest. The implants are a lot wider than my natural breasts - although they look very similar in clothing, I'm finding it difficult to get bras in my new size. You loose sensation on your breasts and your nipples - mine still react randomly to cold but are mostly numb. You won't end up with "Hollywood Boobs"!

However, I suspect that you are already aware of these things and, like me, have decided that life is far more important than having cosmetically perfect "natural-looking" breasts. Good luck and feel free to ask if there's anything else you want to know  

Incidentally, there is a young woman called Jackie Mac who was on a show called Dr 90210 - she had a prophylatic mastectomy at 18 so it's not impossible... the younger you are, the easier it is to recover from operations and the better quality your skin is so it makes for faster healing.