What would you do?

Confused

Confused (Photo credit: Digiart2001 | jason.kuffer)

No.

I mean really.

What would you do?

I saw the surgical oncologist yesterday about the prophylactic bilateral mastectomy.

Remember that thing?

That thing that’s in the back of my mind in addition to the brain tumors?

The lifetime risk at 85% of breast cancer?

Oh yeah.

That thing.

I don’t know.

I’m confused.

I’m scared.

I am feeling overwhelmed.

I don’t want to wait “too long” and wish I’d have made the other decision.

Dr. F is ready to go.  I’m not quite there yet.

Do I dare do the “wait and see” approach?  Does that work in Cowden’s Syndrome?  You see, PTEN mutations causes people to grow things.  Looking back, makes so much sense about why my tonsils were the size of walnuts and why my thyroid was so grossly large.

(I’m doing some things within my power to try to stay on top of that, the overgrowth part) – however, what in life has any guarantees?

Zero

Zero (Photo credit: chrisinplymouth)

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10 thoughts on “What would you do?

  1. Here’s some more of what’s flying around in my head… I’m sort of in the same boat. The pbm is something I think I could have a handle on. I — and remember this is all just my opinion, twisted or not — could live without the boobs & could beat the odds and get them removed now (or soon, anyways). There is something empowering about making the decision.

    Luckily, I was able to somewhat make due w/out the thyroid, uterus, ovaries, 3/4 of colon. I would definitely be hard-pressed if something showed up on an abdominal scan with my kidney, liver (thinking of you, Jill…), and whatever else grows on to whatever is there. These things would make a mess of more bodily function and I’d have to learn to live with that. This sort of scares me more than losing the boobs.

    Back up to the chest, I would be losing …identity… with the boobsters. But I’m looking over at Lori (Beating Cowden’s) and seeing how well she is doing with her pbm +. I’m leaning towards this is a cancer-possibility that I could actually beat before it beat me; I could be proactive, for once, instead of reactive.

    Oh, heck, efff you Cowden’s! Keep pondering, Heather. It will become clearer to you — either way! ***Hugs***

  2. Are there risks to the surgery (aside from the obvious)? Does it eliminate, or decrease your risk of breast cancer significantly? Do you get new boobs out of it? If it does reduce the risk significantly or totally, think about having THAT off your plate of things to worry about. It’s scary to think about surgery and it feels an impossible decision to make, I know. Whatever decision you make, it will be the right one for you. Stay strong.

    • Yes, it would decrease my risk of breast cancer – although I’m not sure the exact percentage. I think it would drop from 85% lifetime to 10% or so? I would FOR SURE choose reconstruction – and as I was sitting at the neurosurgeon this morning…I was thinking how both (PBM and brain tumors) are so incredibly massive. “If only” I had ONE to manage….hah. I appreciate your comment very much.

  3. We talked about this before, you may or may not recall but both my mother and I have the BRCAII mutation. I went to a FORCE seminar a few years ago and they have a program one evening where women who have had the surgery talk about it and they are topless (sounds odd I know) but it’s so you can see what the reconstruction looks like and they will answer any questions you have. I am fairly sure I will do the prophylactic bilateral mastectomy just because I would love to never have cancer and I know it greatly reduces your chances…by something like 77%. My mother on the other hand decided that she won’t do it. She had cancer and made it through…she’s been cancer free now for i think 8 years. She said of course she will do it if she gets cancer again so I guess the question you might want to ask yourself is, “Am I willing to wait until I get cancer to have the surgery?” Again I have decided I don’t want to ever have cancer, but my mom makes a good point. If you are being screened regularly for it and it is detected early, breast cancer generally has a high survivability percentage. I know it’s a tough decision that no person should have to make but unfortunately it just is. If you ever want to talk I’m here for you.

    • I have gone to a FORCE meeting a few months ago….(I ditched church), haha. And I met some INCREDIBLE women there! I wrote about it too, and while I was there I kept thinking, “It’s just a boob job Heather. It’s just a boob job Heather.” – and I was trying so hard to psych myself up about it in that way. It HELPED when I was there at the meeting. But now, that I’m typing this comment – it’s not helping as much as it did. I’m doing the screenings, but eventually – the breast MRI’s aren’t going to be as effective/or needed as they are now. The older I get – then…have you gone to a FORCE meeting?

  4. Am I right in thinking this is the removal of both your breasts? If it is then you should make the decision that is right for you and no one else but in your shoes I think I’d have it done.

    • Yes, you are correct. The PBM (Prophylactic bilateral mastectomy) to manage my lifetime breast cancer risk. For the rare disease I have, Cowden’s Syndrome, the lifetime breast cancer risk is 85% I last read. Where I’m currently stuck is that NO ONE in my family has breast cancer. I know that’s not a “reason” – and one of the doctors told me, “These are YOUR GENES, Heather.”

      I’m trying. I’m working. I’m pondering. I’m learning. I’m trying to figure out MY DANCE in this rain.

  5. I didn’t have the chance to choose, but I have had a question. Ten years after radiation in 2002 for early stage breast cancer I had skin issues from radiation? Has that gotten any better? I home yesterday from the clinic with a very sore arm because of lymph node removal my blood draws and IV’s are only on the right side. If you get this done do you avoid all this? Hope so for you all!

    • I’m so sorry you didn’t have the chance to choose this option. Do you mind me asking if anyone else in your family has breast cancer? And, I believe that if I do choose the PBM then I would get to bypass the radiation/chemo IF I have an occurence.

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