Hi, I'm Ann, 2 weeks away from being 59 and 4 days past being given the news I have *whispers anal cancer.
Excuse me? Monday I had piles, Tuesday they said it was a fistula and fissure and Wednesday whilst I was still coming round after the op I was politely informed I had the rare anal cancer, lots of big words, mention of chemo and radiation and possibility of a stoma. And off they trundled saying I would get an appointment in the post.
After I had groggily googled my diagnosis, I went in search of information and discovered mainly dry facts and that only 1500 UK and 6000 US are diagnosed every year. Rare? We could hold a yearly gathering in a medium sized church hall in UK!
So I told my daughter-by-choice (my eldest daughter's motherless best friend who I took under my wing 20+ years ago) as she picked me up. She deposited me home with 21 year old #2 child who took the news surprising well and offered up her extensive collection of cos play wigs should the need arise and planned how to bling up stoma bags. I haven't told 32 year old #1 daughter as until I know what we are dealing with, she has enough on her plate with her husband and 2 preschoolers. Also haven't told 94 year old mother yet...or my almost 16 year Asperger son. I've let them both continue to believe I had the fistula surgery for the moment.
I was expecting the biopsy site to be a bit sore but by Thursday morning I was in agony. I could only lay on my left hip and draped face down over a pile of cushions. The only relief was the first hour after the painkillers kicked in. I soldier on, managing to shuffle to the bathroom occasionally until I finally forced #2 to see if I had ripped something or if something had fallen out. Was I going to have to live with this pain from now on?
Nope
Massive ruddy boil had come up about an inch from the biopsy site!
I've had a 40 year hate/hate relationship with a condition called Hidradenitis Suppurativa (HS) which likes to fill my armpits, groin, bum cheeks and, occasionally, boobs with boils and abscesses. HS especially enjoys stress and sugar, something I have admittedly been over doing this past week. 48 hours of cold compresses and carefully applied magnesium sulfate dressings and the volcano of acid has decreased to a small hillock of discomfort.
So anyway, that's me.
I've got my first appointment with my local colorectal team on 1st March and I was hoping someone can tell me what to expect at the first meeting?
Also, is our support ribbon brown?
Hi, Ann you have definitely come to the right place to comfort and help you through the journey. I don’t know what i would have done without this web sight and all the wonderful kind people who are on the same journey as we are.
Im 62 just turned, was diagnosed with anal cancer after having, MRI, CT, PET/ CT scans, biopsies done, consultants confirmed on the 10/01/2021. Have had meeting with doctor, professor who will be looking after me during my treatment, this meeting was all about the side affects of the treatment 5.5 weeks of cemo/radiotherapy, i said to them at the meet8ng “ Now that you’ve total scared the life out of me” I laughed after saying it “ what more can you do” anyway I then signed my life away confirming I’m happy to have treatment. They then confirmed that they had a treatment time and plan for me which I start tomorrow 21/02/2022.
I’m getting mitomycin and fluoouraclin chemotherapy with radiotherapy for the treatment of anal cancer.
Mitomycin given intravenously on day 1 only, and fluorouracil given by continuous intravenous infusion on days 1-4 and days 29-32 in hospital last week of treatment.
I’m all prepared with every potion under the sun to help me heal and not suffer through the cemo/radiotherapy.
my intended benefit is -curative.
i live in Edinburgh Scotland, keep in touch hope this helps a little. Love Louise xxx
Hi Scarlett,
Firstly welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us.
I was 53 when diagnosed with squamous cell carcinoma Anal cancer back in February 2018. My journey began a little different to most in the fact that had a very vigilant GP & was diagnosed very early stages (stage 1) therefore I qualified for surgical removal of my tumour as first line treatment. Clear margins were achieved but a small area only had 1mm clearance (cut off point for further treatment) which meant I still went on to have chemoradiotherapy. I had a very short infusion of mitomycin (chemo) on day 1 of 23 sessions of radiotherapy & capecitabine (chemo) tablets twice a day each day of radiotherapy thereafter, treatment was Monday-Friday with weekends off all treatment.
I shared what was going on with my diagnosis with close family & my youngest daughter, then 16 & just starting her GCSE’s, but my eldest daughter has Down Syndrome & if I’d mentioned the ‘C’ word to her she’d have had me dead & buried!! Just as a matter of coincidence my eldest daughter also suffers from HS.
I would think your appointment on the 1st March will be to discuss treatment options in more detail, maybe stoma discussions (not everyone has a stoma prior to treatment, from what I gauge there’s more that don’t than do, but of those that do have them many are reversible). Have you had any scans at all yet? If not that will be on the cards too, definitely a CT & MRI to stage your cancer, some people also have PET scans too.
I’m now almost 4 years post treatment & NED (no evidence of disease) to date. It would be very apt if our ‘ribbon’ was brown wouldn’t it lol although I do believe it’s purple & green. I would also encourage you to try not to Google either as so much of the information out there is very outdated & some of it is just plain wrong! Maybe take a look at the information here at Macmillan or Cancer Research is another reliable source as well as the Anal Cancer Foundation UK.
Please don’t hesitate to ask any questions you have, there’s much talk of bottoms & poo here as you can imagine so don’t be shy I can guarantee we’ve all asked the same questions along the way ourselves.
Nicola
