Here I am saying this is all about tips and hints and how to help people who are going through breast cancer and I’m sitting here feeling like a complete fraud because I’m facing my mastectomy surgery next Monday and am in a total panic about it. Who the heck am I to give tips to other people when here I sit frozen in fear, with a brain that is swirling around in a whirl of thoughts, with no focus?
OK, so Tip #3: Be flexible. Things change, try to go with the flow and don’t expect this to be a linear journey.
I need to step back and fill in the blanks here. I’m actually 9 months in on this whole process, so this blog is a little out of sync with what’s actually going on and I can’t really emotionally toggle back and forth right now, as I’m closing in on my next step which is the biggest, scariest one yet – a bilateral mastectomy on November 15th.
I’m going to try to quickly fill you in on the timeline. On January 19, 2010 I found a lump in my left breast. I went to my OBGYN a few days later and after the examination he said it was probably nothing, but that he wanted me to have a mammogram and ultrasound “just to be sure” and I went for a mammogram the following week. During the mammogram, it quickly became apparent that something was wrong and they did an ultrasound immediately afterwards to view the lump more closely. The procedure took a long time. I knew something was wrong, I knew it wasn’t good news, but I still thought that maybe it was a cyst or some type of benign tumor or something. At the end of the visit, after the radiologist reviewed me, she handed me a brochure that said “Breast cancer center” as she told me I needed to have a needle biopsy. I burst out crying, saying “I have a 12 and 14 year old,” as if somehow that mattered.
On Feb. 9th, I met with my surgeon who I immediately loved. She diagnosed me right in her office and my surgery was scheduled for 2/18. The original assumption was that my cancer was a Stage 2, because she thought it was about 2.2 centimeters, but she was fairly certain from feeling under my arms, that there was no lymph node engagement. One thing to note: when Mike (my husband, more about him later) and I were in my surgeon’s office reviewing my mammo films with her, she showed us that the tumor actually looked like 2 smallish tumors attached to each other with a very thin connecting membrane.
The surgery was a lumpectomy with removal of my Sentinel Lymph node which is the 1st node that fluid goes through (hence “sentinel”, like a sentry guard) and if this node has cancerous growth, means your cancer may have migrated elsewhere, which will have an impact on your ultimate treatment. My lymph nodes were cancer free, which was a very good thing.
After the lumpectomy, my surgeon said it was one tumor and that she’d removed it all, with 2 cm margins all around (very good, 1 cm is acceptable, so 2 is even better) and she said she was very clear that she “got all of it.” She also said that it was smaller and only Stage 1 and everything was fantastic and maybe I wouldn’t even need chemo ’cause it was so small and there was no lymph node engagement.
So Mike and I sailed out of there on cloud 9, and I was thinking “Cancer, Shmancer, I beat this thing, I am wonder woman, my kids are going to think cancer is nothing to even worry about based on my whole episode” and other such ridiculous thoughts. I was really relieved and kind of thought maybe this whole breast cancer thing wasn’t that big of a deal after all, what was I so worried about, yadda, yadda.
Two weeks later, on a Friday afternoon about 5:00, I got a call from my surgeon who said that my team (apparently there is a team of your oncologist, your breast surgeon and your radiologist) had all regrouped after my surgery and the radiologist kept asking why they all saw 2 tumors when the surgeon only removed one.
So she said she was losing sleep at night and the only way to resolve it was for me to have an MRI. I was certain there was nothing to be worried about and scheduled the MRI which went along pretty uneventfully (in a later blog I’ll give tips & hints on how to survive the claustrophobia of an MRI!), sure that all would be fine. Two or three days later, I got a call from my surgeon which ties back to Tip #3 (be flexible, in case you’d forgotten already). The MRI showed that my surgeon HAD in fact removed the entire lump, however, a new teeny, tiny lump was discovered at the bottom of my left breast (remember the first one that had been removed was at the top).
And that’s when everything got really bad.
Because it turns out that when you have 2 different tumors that are in different quadrants of your breast, you have to have the entire breast removed. This was the same week I got my Oncotype DX test results back and they were really bad. Oncotype DX is a relatively new test which takes your specific tumor and puts it through a test that looks at about 15-20 markers and they use that to determine whether or not you will benefit from chemo, if you’re in the Stage 1 or 2 range. Oncotype has a test scale of 1-50 and I tested at 36, with a 24% chance of distant recurrence. Note: This is a very bad score! Not exactly what I’d had in mind back when I heard it was only Stage 1 and was doing the Happy dance.
Between the 2 tumors, and the high Oncotype results, my life was completely turned upside down. Not only did I now have to have a mastectomy, but I was absolutely going to need chemo, and it was most likely going to be a fairly rigorous course of treatment (not the 2 months max I had thought likely at the beginning). This spring and summer, I went through 5 1/2 months of really creepy chemo which at some point, I may tell you about (although if you’re really interested, go to Caringbridge and put in Claudiaschmidt and you can read all the details there). Now, almost 3 months after my chemo, I’m going to have a bilateral mastectomy next week. Yuck. I’m having reconstructive implant surgery. It’s all pretty barbaric if you ask me. I had thought the whole reconstruction thing was going to be kind of simple, but believe me, it’s very complicated and not for the faint hearted.
I went in today for my pre-op and that’s why I’m now in a panic, because it’s closing in and I can’t pretend it’s off in the distance. I tend to compartmentalize things, and have been rigorously NOT thinking about this until the last minute which is the only way I have been able to deal with all of this. The thing is, there are so many lessons to be learned from all this, that I don’t want to rush it, but the surgery is so front and center in my mind today that I can’t think or write about anything else. Now that I’ve got the basics of what happened down, I can talk about the surgery for the rest of this week. Enough for today.