Anal cancer SCC 38 y/o neurospicy female.
Hi everyone,
I’m 38 and have just been diagnosed with anal squamous cell carcinoma, and I’m still somewhere between “okay, we have a plan” and “what the actual fuck, I have cancer.”
It started with rectal pain, bleeding and changes in my bowel movements. Imaging found a mass, and the biopsy confirmed SCC.
My colorectal surgeon has been reassuring about treatment. He explained that the usual approach is combined chemotherapy and radiotherapy, with the aim of curing it without surgery. He seems genuinely confident, which I’m trying very hard to borrow until my own brain catches up.
The big unknown right now is staging.
I’m waiting for my PET scan, currently booked for 27 October. I’m also ringing around to see if I can get in somewhere earlier, because apparently waiting patiently after someone tells you that you have cancer is a skill I did not come equipped with.
My multidisciplinary team meeting is on 14 October, with colorectal surgery, medical oncology and radiation oncology involved. After that, I’ll have individual oncology appointments and treatment planning.
There’s another layer to all of this that I’m really curious about: I’m neurodivergent and have ADHD.
Looking back, I’ve been thinking a lot about how neurodivergence interacts with healthcare.
ADHD can make the seemingly simple act of making an appointment weirdly difficult. There’s executive dysfunction, time blindness, putting things off because life is already at capacity, and the ability to normalise something uncomfortable for much longer than you probably should.
Then there’s interoception — recognising and interpreting what your body is telling you. I’m wondering how much my neurodivergence influenced the way I noticed, interpreted or responded to my symptoms.
And then, because ADHD apparently enjoys irony, the same brain that can struggle to book an appointment has now gone:
CANCER? NEW SPECIAL INTEREST UNLOCKED.
The hyperfocus has arrived.
I want to understand the pathology. The staging. PET scans. Lymph nodes. Treatment protocols. Radiation. Chemo. Side effects. Nutrition. Recovery. Surveillance. Give me the research papers. Give me the acronyms. Apparently, we’re getting a minor unofficial oncology qualification while we’re here.
There’s something strangely comforting about it. I can’t control what the PET scan says, but learning helps me turn this enormous unknown into smaller things my brain can actually hold.
I’d really love to hear from anyone else who is neurodivergent and has gone through cancer treatment. Did ADHD or autism affect how you experienced diagnosis or treatment? Did you need adjustments from your oncology team? Did hyperfocus help, or did information overload eventually make things harder?
And for anyone who has had anal SCC specifically, I’d love to hear your experience too.
What stage were you diagnosed at? What did your PET scan show compared with your original CT or MRI? How quickly did things move once staging was complete? What do you wish someone had told you before chemoradiation started?
I’m especially interested in the unpolished practical stuff: pain, bowel movements, fatigue, working during treatment, parenting, radiation skin care, and what recovery actually looked like rather than the neat little version that fits inside a brochure.
I’m in Australia, so Australian experiences with the healthcare system would also be incredibly helpful.
I’m trying not to catastrophise before I have the PET results. Some days I’m surprisingly okay. Other days my brain casually interrupts whatever I’m doing with:
“Oh yeah. You have cancer.”
So here I am, looking for the people who’ve already walked through the bit I’m standing at the entrance to.
Thanks ❤️