I've recently learned that I have anal cancer and will undergo radiotherapy and chemo, in tablet form are there any other people who have been in my situation who are willing to share their story with me?
I'm sorry to hear you've been diagnosed with anal cancer Leanne.
I know this must be scary but it's good to hear you have a treatment plan in place and I hope it won't be long until you can begin.
I've had a look through the forum and found two members who posted about having this diagnosis earlier this year. [@pipaluck] finished their chemo and radiotherapy in June and [@Ellie48] shared a little about their journey back in March.
Hopefully both of these members will return to the forum to offer their support and share their experiences with you soon but if you have any questions about your upcoming treatment then do give our cancer nurses a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.
Hi I received the same diagnosis a few weeks ago and have the same treatment plan, just waiting to start now. One day I feel really positive and just want to get started and the next I feel like there is no hope. I'm also feeling angry about the time it has taken to get to this point from my "urgent" referral as I'm now much worse. I know I need to put this out of my mind and look forward but it's difficult to control emotions.
Perhaps our journeys will be similar over the coming weeks/months and can support each other. Hope you get started on your treatment very soon.
Hi, I was diagnosed in Novemeber last year after finding a swollen lypmh node. Following a scan/biopsy the node came back positive for squamous cell carcinoma. I was then referred to a gynaecologist to see if they could find the primary. They located a lump in my vagina wall. Whilst there I also mentioned pressure in my bum that i had also been to my gp about and was told it was hemorrhoids. They referred me to the colorectal team. They tried to examine me but it was to painful so had a biopsy under general anesthetic. I also had ct. Mri and pet scans. I was diagnosed with anal cancer that has spread to my vagina and 2 lymph nodes. It was recommended that I have a colostomy which I had on the 14th January. My treatment started on the 24th Feb which was the standard chemo/radiation. My chemo was in tablet form, capabentine. After listening to people's stories about how painful it was I believe I had it easy. My skin wasnt really effected until week 4. I drink loads of water and walked everyday. I was sore but if I laid in bed I was OK, so I laid there for 2 weeks and it was the best thing I did. End of July I had ct/mri/pet scans, showed I had a lypmh nodes in my tummy, upper pelvic and 3 in my neck. I had a biopsy on my neck that's confirmed it was the same cancer that has spread. I start chemo on Friday and have been told its incurable. I hope this doesn't scare you, my cancer was very advanced when I was first diagnosed. The chemo radiation that I had on my pelvic area cleared all the cancer from there. If you have any questions please ask x
I was diagnosed with anal cancer - squamous cell carcinoma. I was really shocked by this as have none of the risk factors and am generally very fit and healthy.
I am currently undergoing the treatment you have been prescribed. I'm into my 4th week and from week 3 it's been tough - skin in groin is painful and broken - but this does not affect everyone. Also feel zapped by 5 o'clock but rest is all that's needed - I have 3 young children so not much chance.
I can answer any questions you might have as it's a very scary time and a rare cancer that not many people talk about. Mine is T1 stage 1 so caught early.
Hi - thank you very much for getting back to me. I'm really sorry to hear about your diagnosis. Do you only have another week or so left of treatment? I don't know how you must be coping with dealing with this and also 3 kids! Are they aware of what's going on? I've not told my daughter, she's 11, that it's cancer. I've just said I have a lump that I don't want there and that they can zap it away. So far so good. Would you say your exhaustion is the main side effect? Are you taking the chemo medication too? Are you nauseous?
i hope you're getting the support you need from family and friends. I have amazing people around me but still manage to feel alone xxx
Hello there, I have 3 radiotherapy sessions to. I am taking oral chemo and have been given anti sickness tablets so that is not too bad. The first 2 weeks were fine, then I started to feel a little tired, but just rest if you can, don't worry about housework.
I think the main things were changes to bowel habit - not really able to go too far from home at times and painful skin. My skin in pelvic region is burnt and very painful in the most intimate areas, there are nurses that will see me whenever I need who are lovely but only really give wipes, silicone dressings and paraffin ointment to keep skin moist. I have read of others getting patches with anaesthetic which would be great. Not everyone's skin does this so you may be lucky.
my kids think I go off to work every day for a few hours as they are too young to understand. I think at 11 you would have to be a little more honest and you have done the right thing by giving information but not too much which would just frighten your daughter.
I've got stage 3 anal cancer and I'm nearly 5 weeks post treatment. I had chemo infusion on day 1 followed by 28 days of radiotherapy and chemo tablets. My advice, based on my experience is, go slowly and breathe! It's a tough treatment, I was ok for the first 10 or so sessions then fatigue set in, skin started to be sensitive and sore, going to toilet a bit more urgent than before. Rest whenever you can, take any help offered ( I didn't which I regret) , if there are set backs, (for example I developed blood clots due to chemo, had to stop radiation for a few weeks but had to have it twice a day on the last week due to having to finish all the sessions) lean into them, expect them even. Ask loads of questions, nothing is too silly.
Keep all your documentation in a folder and carry it with you. As the weeks go on, you will end up seeing many different doctors, nurses, etc and they may not be up to date where you are at , keep a list of your medications and dosage.
Buy a Sitz bath, and a Happy Po bottle (500ml) (Amazon) you will thank me....especially the bottle!!
Moisturise all the time, with appropriate cream, it really helps. When you can, go knickerless , lay on the bed with a good podcast/book and let the air circulate round you!
The first two weeks post treatment, for me were brutal. The pain when going to the toilet was absolutely horrid...but then things calmed down day by day. Currently I still get very tired, going to the toilet is more about timing now and not pain...a little incontinent. Mentally I've found it tough to always be positive and upbeat about this and I think that's ok. Cry, shout, scream when you need to then dry your eyes and get up and go the the hospital again for your sessions!!
