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Posts Tagged ‘reconstruction’

Make mine a double

Posted in Cancer, Decisions, tagged , , , , , on April 18, 2012| 10 Comments »

Why do we never take our own advice? Someone close to me recently had to make a life-changing decision – nothing would ever be the same either way. She was really torn. Like this, there was no good decision – the options both sucked in their own way. It seemed so simple to me: either try the 10-10-10 method from Suzy Welch (thanks to Kristen for buying me that book!) , where you consider how you will feel about a decision in 10 minutes, 10 months and 10 years (or similar), or simply pick a choice, convince yourself you’ve made the decision and live with it for a few days and see how it makes you feel. She listened to me, did some considering in her own way, and then made her decision and stuck to it.

So here I am with this major decision, trying to figure it out, and did I even remember what I told my friend just days ago? Of course not! Not until I ended up doing one by accident. And it did work, because it clearly showed me where my heart was. Here’s what happened…

Today was pre-op. I went to work in the morning and then to the hospital for meeting after meeting after meeting.I still wasn’t sure if I was going with the single or the double. I hate being indeceisive, but just wasn’t sure. I wanted clarification on the money part, though, before finalizing anything, so I called my health insurance. I was told that they would only pay for the left breast if it was deemed ‘medically necessary’ – so if it also had cancer. Well, there you go. I do not have thousands of dollars to do the other side. So it will just be one. The decision was made for me. And… my heart sank. But I knew there was no debating with her, so I said thank you, took the reference number and hung up. I’d have to accept that.

Fast forward to the hospital. I filled Mom and Mark in while waiting for the first appointment. We went in and spoke to the woman about the surgical consent. And there on the first line: bilateral mastectomy. I explained to her what the health insurance had said, she said she would need to get a new form, and called my surgeon’s office. Since she wouldn’t be able to talk to them for a few hours, we were sent on to my other appointments and told she’d catch up to us with the right form later in the afternoon.

So as we went to the different meetings, I digested the fact that it would be a single. And that I’d have to keep coming back here and continually checking the other breast. And going through all the tests. And then the worry any time anything unusual showed up. And the possibility of having to do it all over again. And (sorry – vanity) that I wouldn’t match. It just sucked, and felt like this is only the beginning – now it’s really never going to end.

At the last appointment (anesthesiologist), we met back up with the original (surgical consent) person, as well as talked to my surgeon’s assistant. Their news: my health insurance cannot deny me. It’s part of the Women’s Health and Cancer Rights Act – they have to pay for all related to the other breast, too, to make it symmetrical. To mom and Mark’s surprise, I immediately smiled, said yes, I want the double and signed the consent form. Living with the thought of only having a single, even for those few hours, showed me my true feelings. We all discussed it a bit, I explained, and the anesthesiologist said more and more younger women are electing this, so they don’t have to live with the constant fear of reoccurrence. And the younger we are, the longer we have to live (we hope) and so the more chance we have of it showing up again. No thank you, I want to be done, at least as much as possible.

Another bonus to my decision? I just learned I won’t have to take the Tamoxifen for five years, so there won’t be that concern if I’m ever again in a place where I want to have another child (don’t worry Nick, I’m not there yet!). But it is nice to have some positive options in my future…

Oh – and something that surprised me: tonight at dinner Nick said he knew that was what I was going to do. He turned to Alivia and she confirmed that he said that a week ago. He said that he knew I, like he, would want to do everything I could to just be done with it. And he was right. Like mother, like son. Next time maybe I should ask him what I should do? Hmmm… will really have to think about that one!

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Decisions, decisions

Posted in Cancer, tagged , , , , , , on April 3, 2012| 8 Comments »

So it took me a little while to get past the fact that I hate all the options: frankly, they all suck. But since I have to (as Pete says) ‘choose life’ I have to pick one. And the doctors really weren’t much help. Well, at first it seemed pretty clear: mastectomy would be the best choice. Least chance for it to return, possibility of no radiation or chemo, best chance for a somewhat normal looking breast. Longer surgery and recovery process, more painful – but I can deal with that.

So last Tuesday, as we made our rounds, by the time we got to the reconstructive plastic surgeon, I was pretty convinced it was the right move. We waited over two hours to see him and then got about 10 minutes of his time (after the video), in which he threw me a curve ball: basically said that he could never make a breast as good as a real breast and that if it was him he’d do everything he could to save his real one and to try the lumpectomy first. What?!?!

I don’t know about you, but I wanted a really confident – cocky even – plastic surgeon who would tell me how beautiful I would be when this was all over and that I wouldn’t miss it at all. Ha! Not even close. So it pissed me off and I just wanted to forget the whole thing. Then I remembered that is not one of the options. Which pissed me off even more.

So I calmed down a bit on Wednesday, and on Thursday called my breast surgeon asking for a referral to a different reconstructive plastic surgeon. She was shocked. “But Dr. H is the best! We’ve never gotten one complaint about him and he’s the very best at breast reconstruction.” She assured me that she’d get another referral for me, but also asked if she could talk to Dr. H’s admin about it, as she was sure he’d want to talk to me again. I agreed, conceding everyone has a bad day.

Long story short, he called and we spoke for about 45 minutes. He was genuinely sorry we got off on the wrong foot, but he also wanted to be clear that he cannot perform miracles and only God can make a real breast. This will not be the same and I shouldn’t expect it to be. I probably won’t have any feeling in it. And while he will do a lift on the other side (should I be lucky and not have the gene and have to do a double), they won’t look the same. Yes, this sucks, but it’s also better than having one that is much smaller than the other from the radiation and also has a huge chunk taken out of it – nothing normal about that either!

I realize I’m being vain. That I shouldn’t worry about how it will look and only be concerned with my health. I’m sorry but I can’t help it – I plan to live and thrive after this and I want to be happy with myself too, and hopefully be able to stand looking at myself. I guess we’ll have to see about that part.

Anyway, after our talk I agreed to see him again – and that appointment was today. Tara joined me this time. He was very similar to before – all business and straight to the point, but I got it this time. We talked through the procedure, which will be the tissue expander option. Basically after the breast surgeon removes my breast, he’ll start to put me back together, inserting the tissue expander (like a balloon). Then over a couple of months I’ll go in periodically for saline injections. Once the skin has stretched enough, I’ll have another surgery to put the implant in. And then a few months later will be nipple reconstruction. And the lift on the other side so they somewhat match. Yes, a long road – let’s hope the lymph nodes are clean so we don’t have to add chemo or radiation!

So I am now scheduled for a double mastectomy on April 30. We scheduled for worst case scenario because it’s easier to take the time off and just do one if the gene test comes back negative than it would be to add the time. It’s so late in the month because I asked what was the latest I could safely push it off to because I need some time to get my head around it all, and to get things in order at home and work (although everyone is so supportive and has assured me all will be fine and not to worry about it).

I feel better this way. I have time, I can get things in order, I have a plan and know, for the most part, what’s going to happen. I know, I know, the best laid plans… but you can’t blame a girl for trying, right?

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A crash course in cancer

Posted in Cancer, tagged , , , , , , , on April 3, 2012| Leave a Comment »

I know I’m not going to do this entry justice – there was just so much to learn and absorb on my first day at Dana Farber! So I’ll try to share, but please know that medical stuff is not my forte! I never wanted anything to do with the medical field (left that to my mom, Mark, Heather, Tina, Tara, Steven, etc.) and still would rather not. But now I don’t have a choice. Ugh. Bottom line: this certainly is not that medically accurate, rather my interpretation and transcription of the notes I took throughout the day…

Tuesday, March 27: Five doctors in eight hours. And barely a minute to breathe (or eat) between sessions. You really should be given a certificate or something after to show you made it through the day! Luckily, many of them said the same thing, just in a different way, so that by the end of the day we thought we pretty much got it – at least mom and Mark did. I was (am) still in shock. (Not quite sure that will ever really go away.) But I have to say – they were pretty much all great (with a minor exception that I’ll get into in a later entry) and I really appreciated being able to see them all in one day. I’d much rather jump in then drag this out!

We saw:

  • Breast surgeon
  • Medical oncologist
  • Genetic counselor
  • Radiation oncologist
  • Reconstructive plastic surgeon

I don’t think I’ve ever undressed, got examined and redressed so many times in such a short span of time. Luckily it was one thing I anticipated so I dressed for it and was down to less than a minute by the end (although to be honest we didn’t time it but I’m pretty sure). For the most part (other than the genetic counselor), it was: say hello, undress, examine me, get dressed, talk about my situation, draw a picture (doc- not me, thank goodness as I’d fail that test), explain options, ask questions and leave me to mull over my options on the way to see the next doc. (At least the reconstructive surgeon threw in a video, too – but no popcorn.)

So basically:

  • Invasive ductal carcinoma in two places in my right breast
  • Grade 1 – slow growing on the aggressive scale
  • Stage 2A – size (because one of them is more than 2 centimeters. One is about 2.3 centemeters and one is 1/2 centimeter)
  • They won’t know if it’s spread until they do surgery and get into my lymph nodes (breast cancer tends to like liver and bones)
  • My cancer may not react to chemo – sent away for a test to see for sure. So I may get to keep my hair, which would be a plus. And I’ve heard how horrid it is; it would be a blessing to be spared of at least that…
  • Strong positive for estrogen and progesterone so will need to be on antihormone therapy for five years after – so no chance of any more children until I’m at least 43. (I hope none of you keeled over hearing that statement from me. I know I’ve pretty much said I was done but I don’t like my options being taken away!)

Options are:

  • Lumpectomy where they will cut both masses out, as well as some around it to be sure they got it all. Day surgery with about two weeks recovery time.  Then radiation every day Monday through Friday for six weeks. You can’t have any reconstructive or plastic surgery with this one. (No spackle to fill in the hole, as the doctor said one patient asked.) So there will just be a big dent/hole, and the radiation will shrink my breast, too.  The chance of it coming back ranges somewhere between 6 and 10% depending whose stats you go with. Could do this in a week or two.
  • Mastectomy where they will take the entire breast and build me a new one. (Multiple types of reconstructions – another decision to be made if this is the winner.) About five days in the hospital, with 5-6 weeks recovery time. May be able to get away with no chemo or radiation. Approximately 3% chance it could come back. (Better odds but not as much of a clear winner as I’d heard.) Could do in three or so weeks.

Then there’s the genetics stuff. The question is, why did I get breast cancer when I’m ‘so young’ (at least for this) and no close family history (my mom’s cousins only)? So there’s a chance I could have what some call the breast cancer gene. BRCA1 or 2. Basically, if I have it, I should have a double mastectomy because there’s more than 50% chance I’ll get it in my left breast too. And up to 40% chance I’ll get ovarian cancer (oh yay). And worst of all, a good chance my future granddaughters or nieces will have the same gene. (I can’t even think of that.) So the test has been ordered and we should find out by the end of next week or so. (It takes up to 14 days at some place in Utah.)

So much to think about. I was completely fried at the end of the day, as were mom and Mark, although they seemed to be in better shape than me. They dropped me off, I called dad and Maggie so they wouldn’t worry, and then I went to dinner with Tina and Mike so I could explain it all to both of them at once rather than rehashing multiple times. That definitely helped because they got me out of the bitchy mood I was falling into as I really hated my options. They made me smile and laugh and somewhat forget about things for a while – and then when we did get into it, they asked the right questions, made me think and even convinced me it would be ok no matter what I choose…

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