Posts Tagged ‘lumpectomy’

I honestly cannot believe it: today is five months since I was sitting in my office and got the call from my doctor saying “you have breast cancer.” In some ways, it feels like a lifetime – I hardly remember a time when cancer wasn’t consuming my life. In other ways, I don’t know where these last five months have gone – I feel like it was just February, we were finishing the shutdown and celebrating my 38th birthday. (What a dud 38 has turned out to be – bring on 39!!!!)

But as much of a nightmare as this has all been, anyone who knows me knows that I am a firm believer that everything happens for a reason. I refuse to curl up in a ball and cry endlessly (although I let myself for a few minutes every now and then…), become useless or a burden and just accept my fate. I am not going to over-analyze this and whine ‘why me’ over and over, either. In fact, I don’t think I have to – I think now maybe I know why me…

Just as I sat down to write this, my phone rang. I was so relieved to see my friend’s name. It was only a month ago that she told me the horrific news that she’d found a lump. I refered her to my fabulous dream team at Dana-Farber and it was confirmed as breast cancer. And today she was having a lumpectomy. While I’d heard she made it through fine, I was excited to hear her voice and know it for sure. I exclaimed my relief over the news that the doctors said all went well and they believe they caught it early and it’s all gone. And she said, “It’s thanks to you. You reminding everyone to check.” And that’s it. Maybe that is why. Maybe I needed to go through this so others can catch it early enough and stop it. Words can’t express how thankful I am that she found that lump and stopped it. That makes every second of this journey worth it.

So please – do your self-checks. And tell your sisters, mothers, wives, lovers, friends, daughters, everyone, to do their checks, too. But it’s not enough. We have to stop the damn c-word completely! As some of you know, I am excited to have two opportunities to help in the collective fight against cancer:

  • Tomorrow (Tuesday, August 21) at 1:15 p.m. I will be interviewed live on the 11thAnnual WEEI / NESN Jimmy Fund Radio-Telethon – Events – The Jimmy Fund. (WEEI is Boston’s sports radio station – 93.7 FM and 850 AM and you can listen live online at www.weei.com; It may also be simulcast on TV (NESN), but that’s TBD.) They are going to interview me about my personal cancer experience, my interactions at Dana-Farber, etc. Hopefully I’ll be able to help some cancer survivors know they are not alone in their experiences and inspire some people to donate and help conquer cancer. (And hopefully I won’t embarrass myself on live radio/TV…)
  • I’m also honored that my childhood friend Heather Forbes started a team for me in the Jimmy Fund Boston Marathon Walk on September 9. I am thrilled to be feeling healthy enough to walk the last three miles with the team, so have registered. Our team is still looking for walkers (and supporters), so if you are able, please join us – there are multiple legs, you don’t have to do the whole 26.2 miles! For more information on walking or donating: Amy’s Jimmy Fund Walk Page.

Thank you: every prayer, every self-check, every step walked, every penny donated: together we really can make a difference in this fight!

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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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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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