Friday, July 24, 2015

DCIS (Stage 0 breast cancer), fibromyalgia and treatment

So I had a sore and swollen left b00b and I went and saw my GP at the end of April.

He recommended a mammogram to suss out Lefty.

Lefty was fine, but Righty had a thing. Some calcifications. Suspicious ones.

Multiple doctors visits ensued. A stereotactic breast biopsy was ordered. That means getting a needle and sticking it into my b00b while said b00b is squashed in a mammogram machine.

Pro-tip #1 for people with fibromyalgia who have to get a stereotactic breast biopsy, get it done upright. I tried to do the face-down-b00b-through-a-hole stereotactic table but couldn't turn my head to the side and stay still on that hard surface.

I took analgesics and a muscle relaxant to try and stop my neck/shoulder from seizing up during the biopsy. I didn't seize up, but the local anaesthetic injection hurt like my b00b was on fire.

Biopsy results came back with the 3rd best breast cancer diagnosis you can have - high grade DCIS with comedo and solid pattern.

Stage 0 non-invasive breast cancer (the best diagnosis would have been low grade). DCIS stands for Ductus Carcinoma in Situ - atypical cells that are multiplying fast (2 of the cancer criteria) but stuck in a duct (so missing the 3rd thing needed for it to be more worrying - no invasion).

Current clinical guidelines for treatment of high-grade DCIS in a young (relatively-speaking) woman is to perform a lumpectomy and follow it up with 25 doses of radiotherapy.

Wait, what?

Hang on. What The Fuck? Surgery and radiotherapy?

I have two part-time jobs and am in the write-up year of my PhD. Ain't nobody got time for this on top of that.

10 days after diagnosis I had surgery (30th June) and now I have a smaller right breast and a hard lump at the surgery site (a seroma). Surgery happened fast.

They got it all out and no invasive cancer was detected alongside the DCIS (which sometimes happens).

Recovery from the operation involved 9 days of complete non-functionality. The we discovered I was having a bad reaction to the low-dose amitriptyline I was put on after the surgeon told me I had to stop HRT. My brain turned back on on Thursday the 16th June. That was a momentous day - I could think again, talk correctly and I stayed awake all day. Imagine that!

I had to stop HRT because >70% of breast cancers are hormone driven.

Welcome back menopause symptoms, you suck arse and you're not welcome. I'm hot flushing all over the place, my emotions are labile and my sleep is increasingly craptastic. The low-dose amitriptyline was helping my sleep but it was also making into a zombie who couldn't think straight, or even talk proper-like during the day.

B00b appears to have some cording from n1pple to rib cage (my surgeon went in via the 6 o'clock to 12 o'clock line of areola-meets-normal skin). My b00bs are giving off a Marty Feldman vibe if you get my drift. Am going to see a physiotherapist who specialises in breast cancer patients.

Yesterday I had my first appointment with the radiation oncologist and she said she's treated patients with fibromyalgia before. Fatigue is a common side-effect of radiotherapy - I should expect it. Plus site tenderness (which is my whole fucking b00b).

Today. I went into the radiation planning session. I have to hold my right arm above my head to get it out of the way of the b00b (that's what everyone has to do apparently).

Pro-tip #2 ask if you can keep your other arm down, you can if they can still tattoo the dots above your arm-meets-body line.

I took a shitload of painkillers and a muscle relaxant and still, holding my arm over behind my head hurt a heap and I feel like a spasm is coming on. I'm on a 5 weeks, 5 days a week radiation schedule starting August 5th.

I've googled fibromyalgia and radiotherapy but there's not much out there.

I'll see if I can keep track of how I'm feeling.

I am not dying of cancer so that's great obviously. But my treatment is the same as if I had Stage 1 cancer with no lymph node involvement. I get to miss out on chemotherapy which is a giant fucking YAY.

But still I have now spent months worrying about the b00b and now I'm in treatment and I'm sad that this is going on for me now. I hate this portion of my life and my eyes are sore from crying.

So, yeah. That's what happening for me at the moment.