Rollercoaster

So, yesterday was a rollercoaster.  So much so that I’m not currently sure if I’m up or down.  And the results and choices are so complicated right now, that I might not be able to make this make a whole lot of sense.  I’ll try, though.

First let me back up and say that I found out, yet again, that I am not super original.  While I write posts, wordpress populates things on the bottom I can link to, using the words I type as clues to what I might be interested in.  One of the suggestions was The Scar Project, who’s tagline is, “Breast cancer is not a pink ribbon.” At first I thought, “Hey!!  That’s like me!!”  Then I realized, “Oh. I’m like them.”  Only way less cool.  Their site is pretty badass.  You should check it out (Okay, maybe not you, Mom and Dad.  I’m not sure you’d like it).  But it is basically a photo essay of all of these women showing their scars from their various breast cancer-related surgeries.  This experience reminded me of reading Stuff White People Like, which I’m convinced should be renamed Stuff Liberally-minded White People Like.  One the one hand, I was rolling with laughter at how exactly the author nailed us.  And on the other hand, I realized what a big stereotype I am.

Okay, back to the rollercoaster.  So, I was sitting in class, checking my phone compulsively, like a teenager with her first crush.  I turned away for approximately 30 seconds to say some snarky little comment to my friend Jordan, and when I looked back, I had missed a call from my surgeon.  Figures.  The message was about preliminary results and they were GREAT!!!  Of the five sites they had biopsied, only one was malignant, and that was the one that was closest to the already-known cancer.  One of the places they got benign tissue from was the lymph node.  This meant that the most suspicous-looking of my lymph nodes was actually  cancer free.  All of a sudden, lumpectomy was an option again, although it would still be a pretty big chunk they’d have to take out — about 9 cm — it still was better than hearing it had spread all over.  I mused a lot about good news being relative.  A few weeks ago, finding out I’d have to have a lumpectomy and radiation was devastating.  Yesterday, it felt like the best news ever.

But remember, rollercoaster.  (Don’t worry, the dip isn’t really that big.  It’s more of the twisty type). So after a day of phone tag, my surgeon and I finally connected later in the evening.  The final results indicated that although the tissue at the lymph node site wasn’t cancer, it also wasn’t lymph tissue.  Apparently they roll a lot during these needle biopsies.  I have to say, the radiologist was great.  I watched the ultrasound the whole time, and it sure did look like the needle was right in the middle of the node when she took her sample.  But the path report says otherwise, so no luck there.  Which, I’m reminding myself that this doesn’t mean the node is actually as shifty-eyed as it appears.  It just means we don’t know yet.

The other thing that’s funky about my results is that they are indicating they are one stage of cancer, but the cancer looks and feels like another stage of cancer.  And it has both the surgeon and the radiologist confused.  They keep saying, “The results say DCIS (ductal carcinoma in situ) with invasion, but DCIS doesn’t make a mass like yours.” We still don’t know about whether or not the cancer is estrogen and progesterone-receptor positive, which will tell us something about whether or not to do  chemo (I think…. I was less clear on this after talking to my surgeon yesterday.  I do this thing where I can understand for about 3 minutes.  Then my brain shuts down).  Hopefully we’ll hear about that today or tomorrow. But my surgeon did say that chemo is looking less likely, which I was thrilled about.

So, I have two choices.  I could have a lumpectomy right away.  Because my surgeon thinks the cancer is more invasive than the results are indicating, she wants me to think of it less like a curative lumpectomy, and more like a really big biopsy that will give us more definitive information about the cancer, and buy me time to decide whether or not I want reconstructive surgery.  Reconstructive surgery is a whole other post.  If I go with lumpectomy, my surgeon thinks I will likely need another surgery anyway, since she doesn’t believe the pathology results.  But, it leaves the door open to other options.  Mainly, reconstruction.  And, it’s possible it could end with a lumpectomy.  Not probable, but possible.

Or, I could just have a mastectomy now and be done with it.  If I choose that option, I’m basically saying no to reconstruction  for a few reasons, one of which is the availability of the doctors who perform the reconstruction.  Again, I’ll explain more about reconstruction in another post.  So basically, I’m choosing between deciding everything now, and having peace of mind, or keeping options open, and giving myself time to decide about reconstruction.

It should surprise nobody who knows me well that I am delaying the big decision.  It’s like choosing to be in a Ph.D. program.  You get more time to decide what you want to do.  So. Lumpectomy with sentinel lymph node biopsy.  May 8th.  Here we go.

7 thoughts on “Rollercoaster

  1. Hey Cuz, I want to share some info I learned during my moms recent DM.

    After talking with my mom’s plastic surgeon right after her surgery I would personally opt for the double mastectomy. I asked him what the pros and cons were and if a loved one had breast cancer what path would he choose for them. He said he would choose the DM for several reasons.

    1. Once they are doing the surgery to remove the cancer it is a good time to get the reconstruction done and if you can be happy with size B melons, it’s fairly simple because your skin and surrounding tissue is still healthy. Think about it as “one stop shopping”. She was only in the hospital for 24 hours. They also did the node biopsy at the same time.

    2. You don’t have to have radiation (which can damage your skin and tissue) making future reconstruction difficult.

    3. You won’t get breast cancer again because there is no breast tissue left. You will feel like hell for about six weeks. School is important and having a Ph.D. would be amazing but not as important as YOU and your health. If the people who run your program are human they will understand.

    I love you and everyone in our family loves you and we are here to help. XOXO, Alison

    • Thanks, Alison. Radiaton might have to happen to me regardless of surgery choice, due to the size of the tumor. I think mastectomy only saves you from radiation if the tumor is less than 5cm, or something like that. But have no fear, I am analyzing each decision and meta-decision to death!

  2. Lauri,
    I am sorry to hear all this news and how quickly your plate has become full up. I’m thinking about you and sending warm thoughts your way. As you might recall, Gerina is a breast cancer survivor. She is 20 years cancer free after her stage 3+ with lymph node involvement diagnosis. She had a radical mastectomy with chemo and radiation and no reconstruction. I mentioned your situation to her and she said that if you would like to chat with her please do not hesitate to ask. She says there are so many little things about this whole process she wished she had known. Let me know if you want to connect with her, anytime. Again, I’m thinking of you.

  3. Lauri! You are so brilliant and brave. I know you will get through this and I just wanted to let you know that you are in my thoughts!!! Thanks for sharing your process. I know you have lots of support, and know you have even more if you need it. Peace to you! Nina

Leave a reply to Betsy Cancel reply