It was never my intention for this post to take so long to write after my “initial diagnosis” post. Part of the delay is that I still get fatigued, and if I don’t stop doing things when that feeling hits, I’ll end up vomiting. Weirdly to me, this only happens from work-related things or other mental tasks. It’s never happened from going for a run or to the gym or being out shopping or whatever. Tony and I decided that must be because I can slow down my body, but I’m not used to telling my brain to go slower. So I’ve been working on that, and using my limited energy to do my actual job (which I would really like to keep, both because I like it there and because I have really good insurance).
Anyway, the other part of the delay is that I haven’t been able to figure out how to write this part of the story because it’s all jumbly in my head. Usually when I undertake any writing, from a brief to a Facebook post, I have an idea in my head of what I want to say and how to say it. (The post on Facebook where I announced my cancer was drafted in Word first.) With this section of the story, I can’t remember what happened when. What I mostly remember is being confused and feeling like I was in a whirlwind. As soon as you are diagnosed with breast cancer, you are sent to a million appointments and tests and plans are made and then changed and…meanwhile you’re still processing that you have cancer and trying to understand the words everyone is using to explain to you what you have, exactly, and what the treatment will be. Then I decided, maybe letting the next couple of posts reflect that confused state is okay – it’s probably a truer reflection of how I was feeling at the time than a super clear and organized post would be.
So, here we go. (Geez, I do ramble on, don’t I? Do I ever shut up in person? Maybe don’t answer that.) Before I hung up with my OB/GYN, she referred me to a breast specialty practice affiliated with the hospital where her office is. They call themselves “breast specialists” or “breast surgeons” which I find confusing because I also had a plastic surgeon. So I have a tendency to refer to this doctor as my surgical oncologist. There are three doctors at this practice, and my OB/GYN recommended either of two of them based on her patients’ experience and preference for a certain type of bedside manner not shared as much by the third doctor. (This is not me dancing around – this is what she said to me. Like I said, I’ve had the same doctor since I moved back to Texas so I assumed she meant the third doctor could be kind of gruff or assholish.) After checking them both out online and feeling either’s qualifications were really good, I called and asked for an appointment with either of those two doctors. They said they could get me in faster with Dr. T, so I chose her. I called on a Friday and they made me an appointment for Tuesday. Tony and I discussed it and decided two things – we wouldn’t tell anyone until after that appointment when we would know more, and that if I was given a choice I would ask for a double mastectomy. I have too many friends who have seen a recurrence in the other breast, and given my previous surgery it would be easier to make them both look the same if we just had them both done. Primarily, I knew I would worry less if I just had both breasts totally removed.
Luckily we had a busy weekend to distract us. Friday night we had a wedding and Saturday night we had a birthday party to go to. Monday morning I told my boss (I didn’t actually intend to tell him quite that early, but the opportunity arose and I took it.) . Another lucky point for me – he’s been 100% fantastic about allowing me as much time as I would need (and it has been and will be a lot).
Tuesday Tony came with me to meet Dr. T. She told me that I had invasive lobular carcinoma, which is not the “normal” type. Most cancers start in the ducts of the breast that carry milk; mine is one of the 10% that started in the lobules, which are the part that make the milk. For that reason, they are often larger tumors when they are diagnosed – they tend to start in the back of the breast behind the nipple where they’re hard to see on mammograms. Mine was one of those that had just grown enough to come around close to the skin – the ultrasound estimated it at 5.5 cm but she said it was likely to be bigger once they got a better look at it via MRI or surgery. She wouldn’t know the stage of my cancer until further testing but we knew it was either stage 2 or stage 3 – I was at least stage 2 based on the size of the tumor. If any lymph nodes were involved I would be stage 3. She told me the lymph nodes looked good but they couldn’t be sure until actual surgery whether or not they were cancer free. I was estrogen and progesterone positive, which meant my cancer was fueled by hormones. I was HER-2 negative, which you don’t need to know about except that it was good that I was not “triple positive” as those cancers are more aggressive. I had a KI-67 score of 44 which she called “medium-high,” meaning the cancer was growing somewhat quickly. I was grade 3 and pleomorphic, which she described as meaning my cells were really messy compared to a nice, clean non-cancer cell.
Because of all of this, she gently told me that I wasn’t a candidate for a lumpectomy or a nipple-sparing mastectomy. Everything on the left side needed to go. I think she was relieved that we had already determined to do a mastectomy. She did say the chances of recurrence were only 5-7 (I think) percent higher if I did a single as opposed to a double. I asked if my insurance had to approve it and she said it was up to me, so we opted to stick with our plan and have the double. But before we could do that, I needed to meet a plastic surgeon to discuss reconstruction. I also needed to undergo pre-surgical chest x-rays and a physical and get an MRI, a CT scan, and a bone scan to make sure everything was how they thought it was. Because Tony and I both liked Dr. T, because she had a good reputation, and because we knew we wanted the mastectomy anyway, I didn’t feel like I needed a second opinion at this point. I did think I’d probably want one for the plastic surgeon and the medical oncologist I’d meet later.
I asked Dr. T if I needed to make any lifestyle changes in the meantime, and because I wasn’t taking any birth control or other hormones, the answer was no. I was told someone would schedule the testing I would need and the plastic surgery consult and call me ASAP so we could get it done and surgery scheduled. Our plan was to go home and call my parents and sister and start to spread the word. On my way home, I actually got into a car accident, so we decided to delay telling everyone one more day. My head was spinning with all of the information we had received anyway so I was glad to have one more day to deal with everything. This was also election day – so on the plus side I found I cared a lot less about the outcome than I normally would have (on that day, anyway). I started to look up some things about what Dr. T had told me online and quickly decided it was better not to know. In hindsight, one of the accidentally smart things I did was stay off the internet at the beginning of all of this. I just did what they told me when they told me to do it, and tried not to think too much about what it all meant until I needed to or look up statistics. Meanwhile, we waited.