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Archive for April, 2012

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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The call

Posted in Cancer, tagged , , on April 1, 2012| Leave a Comment »

Tuesday morning, March 20: My phone rang. It was my doctor. “I know you didn’t expect to hear from me until later this week, but we were afraid it was going to be the worst case scenario and it is. Invasive ductal carcinoma.” “Which is…?” I ask. “Invasive breast cancer.” Oh. I was already texting with Mike. He appeared in my office and we Googled it as soon as I was off the phone.

I was in shock. But she was pretty clear: she wanted to get me in with a breast surgeon as soon as possible and would call to schedule it herself so there was no delay. I made my own calls or sent texts to those I knew would kill me if they didn’t know immediately.

Wednesday, March 21: The surgeon was initially scheduled for April 2, but my doctor was concerned that was too far. So she got one to see me the next week, March 27. But that night over dinner, Kristen made me promise to get at least a second opinion at Dana Farber, where her brother Greg was treated and where they have a special program for young women with breast cancer. Of course Beth Israel is great, but it never hurts to get a second opinion, especially at the world-renowned cancer institute.

Thursday, March 22: By 10 a.m. Kristen had an appointment for me with a team of doctors at Dana Farber. The soonest available was April 4, which concerned me a bit since my doctor had thought April 2 was too late. But I called and talked to the patient coordinator at Dana Farber anyway. She understood my concern, but also warned me not to rush into anything and that it should be fine to have a second opinion then. I asked to be put on a waiting list and she assured me she already had my name plastered on her computer, but asked me not to get my hopes up as they never get cancellations. “I understand,” I said. After all, I certainly wouldn’t cancel that appointment!

It was less than an hour later that my phone rang again. “I know you didn’t expect to hear from me – I didn’t expect to call you – but we just had a cancellation for this Tuesday. And it is with the director of breast surgery, among others.” Done. Thank you, Kristen! Now it was just waiting five more days.

I told people. As one person put it: it makes sense, I’m a communicator. I wanted people at work to know why I wasn’t going to be there off and on for a while (although I didn’t know when or for how long, just that it would be lots of doctors’ appointments, then surgery, recovery and then possibly chemo and/or radiation). And I wanted my family and friends to know what was happening – I didn’t want anyone hearing it through the grapevine, if I could help it. And I wanted them to see and hear that I was fine. Really. I can beat this.

I think that has been my biggest coping mechanism to date: telling people and assuring them I will be fine, no matter how bad it turns out to be. If I promise that, then it has to be. I do not break promises, and I don’t make ones I don’t believe I can keep. I know I may not have real control over this, but I do believe all of the positive thinking, prayers, good vibes and, most of all, love emanating from everyone I know must be more powerful than some stupid cancer!

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Back to the beginning

Posted in Cancer, Discovery, tagged , , on April 1, 2012| 1 Comment »

Wednesday, March 14: Nick and I flew home from a few days in L.A. visiting friends. We were exhausted. Our plane had to make an emergency landing in New York because there was fog in Boston and the plane didn’t have enough fuel to circle. (WTF, right???) So it added many hours to our already long journey. I pretty much collapsed when I got home, but something – I have no idea what – made me think: I haven’t done a self-check for breast cancer in months. I should do that. So I did.

I always wondered if those self-checks were even worth doing. I only do it once a month – and in this case, it had been several months. I can’t even remember the last time I did one. Would I ever actually notice something different? If you’ve ever asked yourself this (and both women AND men should be doing them once a month), the answer is yes. You will notice it. I couldn’t quite believe it. I felt the lump on the outside of my right breast, and didn’t really believe it. So I felt the same place on my left breast – is this normal, does it feel the same on that one? No and no. I kept going back and forth, still not sure.

I was texting my cousin Tara at the same time. “I just found a lump on my right breast. But I’m sure it’s nothing.” “I’m sure it’s nothing, too. It’ll be fine. But go to the doctor just to make sure.”

Thursday, March 15: It was a crazy morning at work, even more than usual since I’d been away for a few days, even though I had my computer and did some work during my trip. It was lunch by the time I got around to trying to find a doctor. I hadn’t found one since I moved into the city and since Nick uses the car to commute to school, it would be impossible to keep my old doctor who is over an hour away. I was just starting my search when Tara texted: “I’m sure you’re very busy, but please call your doctor.” I assured her I was working on it.

I found a seemingly well credentialed female doctor on Berkley St. I called, they said she was accepting new patients and I explained my situation. I went in that afternoon and was glad I did. She was great. Asked many questions (including if it hurt – I said yes, but probably because I kept poking at it to see if it was really there and make sure I wasn’t bothering her for nothing) and was the right mix of concerned but reassuring. And action oriented: she wanted me to go to Beth Israel for a mammogram (my first) the next day.

Friday, March 16: I left work early to go to my appointment at Beth Israel. A few people asked if I wanted them to go with me. No – why would I? It’s just a mammogram. I can handle it. Well, the mammogram turned into a breast ultrasound – which is much easier than having your breast squeezed flat between hard plastic/metal whatever (so not fun, although the woman doing it was so nice, cheery, sympathetic and distracting). During the ultrasound, a second (smaller) lump was found. I listened as other doctors were called in to consult. I heard “not cystic” and my heart sank a little. That was what several people had told me it probably was: “It’s probably just a cyst. My aunt/mother/ex-boyfriend’s cousin/neighbor had one and it was all fine.”

The lead doctor turned to me and said, “We’d like to biopsy both of these. Can you stay?” Uh, yes. Do whatever you need to do. Take them out now, for all I care. Just get this whole thing over with! “Is anyone with you. Do you want to call someone?” No, but I’d be fine. I just wanted to get it over with.

Thank goodness Doreen had told me what a biopsy was! Forewarned was definitely forearmed in this case! Everyone at Beth Israel was wonderful and thoroughly explained everything, but definitely in more medical terms. Doreen gave it to me straight: Huge needle. Painful. Not fun. And she was right.

Before she left the room, the lead doctor said we’d probably get the results Thursday or Friday of the following week, and she would go call my doctor now to update her on the events of the afternoon. Then she told me one more thing, “You’re a young woman. I have to tell you: whatever is in there is not good. It’s going to have to come out. Please prepare yourself for breast surgery.” Okay…

I left with an ice pack clutched to my breast and two more in my bag. I’d be bruised and hurting for at least a few days. I settled in on the couch as soon as I got home. Nick, Alivia and Kevin had some pizza with me, went and got me tylenol and a frozen yogurt, then went out. Several people offered to come over and keep me company but I was so tired, in shock and just needed to be alone. I couldn’t believe this was my life. Still can’t.

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