I met with my oncology navigator (an RN), my radiation oncologist and medical oncologist today. It was…a lot. It was almost 5 hours of meetings/talking about cancer.
Everyone in that clinic today wanted me to consider a cancer study. I must be a poster child for it. They laid it on thick. The study is for patients with DCIS (ductal carcinoma in situ) like me. That basically means the cancer is in my milk duct. Some people call this “not cancer” because the cancer cells haven’t spread out of the duct.
(But um. It can. So…)
They asked my family history and I realized there is more of a family history for cancer than I was carrying around in my brains. Both of my grandmothers, my auntie, and my two baby cousins. Only one is still alive (love you, Auntie Wendy!!!). Lucile (Lucy) got her breast cancer around 69/70 and died at 75.
Forgive me if I’m a little sensitive about this shit.
I asked for my pathology report immediately. They did not offer it or have it available to explain…which was odd.
So I looked at it and asked specific questions about it. So they call the DCIS grade 2, but the architectural patterns of the cells are comedo and cribriform. Cribriform is grade 2, intermediate. Comedo means “solid.” It basically means that some of the samples were solidly blocking my milk duct. Some (the cribriform) were “intermediate” blocking. The necrosis result shows that there is “expansive comedo necrosis.” I’m surprised they are calling this grade 2 with all the comedo in there. Expansive comedo necrosis is why I’m not waiting around to see if it gets invasive and decides to pack its bags and head out of the milk ducts.
I don’t want to later have to do chemo because right now I choose to be “cautious.”
Yes. I feel like in order to be my own health advocate I’ve had to become a researcher about breast cancer and DCIS in general. It’s annoying, but also empowering.
I am all for science. The reason they know how to do all this is from studies. We need studies. I am 100% here all day for science. But I’m not willing to be part of a study that randomly assigns me the “prayerful watch and wait stance” with 6 month intervals for mammograms VS. a lumpectomy/radiation/tamoxifen choice.
(yes, you can back out at any time…but they save your tissue (weird, but understandable, but also weird?) and I don’t want to have that conversation with my doctors and see their disappointment. I’m not up for that shit.)
Would YOU? Could you possibly sleep at night knowing that cancer might be multiplying inside your breast like a teenager’s hormones at a school dance?
Yeah. I thought so. You’d want that shit out as soon as possible.
There’s pretty little doubt in my mind that I’m going to get this cut out in the form of a lumpectomy. However, the other fly in the ointment is that the lump is directly behind my nipple. On my perfectly beautiful right breast.
So I’m freaking out that it’s going to make #favoriteboob look bad. I need reassurance that it’s ok and normal to not want one of my treasured body parts to end up looking weird. It feels vain, when it’s only gonna happen to save my life. But. It’ll save my life. And then I have a fucked up breast for all the rest of it? I don’t want a fucked up breast. If they end up having to take it off completely later due to increased cancer shit, I’d want reconstruction. I know this 100. I have lived most of my life with very large breasts and not having them would change my life and I don’t want to.
I can’t do the no-breast or bad-breast thing. So I’m going to make sure they have a plastic surgeon in the meeting with me and my general surgeon next week. Maybe we can even up the sizes of my boobs. I mean…if all this is happening maybe we can just make lefty and righty match for once in my human life? Lemonade out of Lemons?
I’m overwhelmed and deeply exhausted. My breasts still hurt and my cancerous one is SO BRUISED and orange/yellow/purple/green and has a hard lump on the site where they pulled flesh out of my body. Just looking at it makes me have the heebie jeebies and feel nauseated.
I got my first ever in my life flu shot today. Because Covid. And because Cancer.
Fuck both of those bastards.
This is all I have for you today.
I’m sorry you’re going through this. I know the journey well. Your pathology report looks remarkably similar to mine.
Please, let me know if you ever want to talk about my experience or have any questions.
You are a strong woman! ❤️
Thank you Sarah! ❤️🙏🏼
Didn’t you have to do chemo? Yikes. 😬❤️
Yes. Honestly if I had to do it over again I would rather do chemo than radiation. That was horrible and I still have pain from it.
Thank you for telling me. ❤️
Was your initial diagnosis DCIS as well?