Hi Everyone, I thought I would post here in the hope of finding someone else with the same cancer.....1 is the loneliest number ....isn't that how it goes I was diagnosed with anal cancer on the 3rd November 2008 and like all of you it has been a huge emotional rollercoaster but after all the chemo and radiation I had my last treatment this afternoon. Probably why I am up at this hour writing in a forum...too buzzed to sleep and too busy celebrating (if only in my mind).I've been reading the forum for the cervical cancer ladies as although our treatments are slightly different the areas of radiation and the effects are very similar. With treatment over I now have to look at how to minimise the long term effects so I'm doing a lot of reading , trying to sort out what is relevant..... what is useful. The HPV that is responsible for cervical cancer is the exact same little blighter that causes anal cancer, it just picked a different spot to fester. My tumour was T3N0 which means that it over 5cm - but thankfully hadn't spread to anywhere else. So now the treatment is over that will be the end of it - there is no other option - I can feel it shrinking away as I type , I just have a 3 month wait until they run all the tests and tell me that it has disappeared. I feel so great that all the trips to the hospital are over, my butt although fried will recover, and I have a very long and wonderful life to look forward to. I do feel a bit like I've been set adrift as I don't see a doctor for 6 weeks but I'm sure I will get used to it. Anyway, i could prattle on for ages and I hope that no one out there has my cancer but if you do then I hope I will hear from you (or anyone who is up for a chat).Sharon
Hi Sharon - Claudia here( we wrote via Bev a few days ago). I know how you feel when you think there is no one else with anal cancer but I am sure there will be answers for you. My husband had anal cancer but only discovered it too late - had surgery + chemo and radio. This was way back in early 90's so I think advances have been made since then. Be strong my dear especially as you are young and have a young family. miracles can and do happen. I will continue to write to you privately via email. cheers claudia
Thanks for words of support Claudia, I have been slack in getting back to you. Many apologies. Where do the days go! I just thought I would get on here to just update things a bit. I finished my treatment about 7 weeks ago and so far so good. The skin has mostly healed though my butt is very tender and things just wont ever be the same but I can get used to the "new me!" At least I have skin now I had my 6 week post treatment check up last week and it's all wonderful. The doc had a check and she can not find any evidence of a tumour, not even a hard patch where it once was. To say that I am ecstatically happy is a huge understatement. I have scans in 3 months time and that will make me feel much more confident in the outcome. The pain and the indignity of the treatment have been SO worth it! A huge thank you to all my amazing friends here - you guys are just so special, you have made the journey that little bit easier
hi, I've just been diagnosed with anal cancer, I get a CT scan tomorrow to plan treatment and see is there are any other cancer sites. The cancer bump is 1.5 CM, so that is grade 1.
I loved that you said "The pain and the indignity of the treatment have been SO worth it!" . I worry about the treatment, the chemo isn't the main concern because that seems to have an end time for most of the side effects. it's the radiotherapy that has me really worried. so hearing someone sy it is worth is is really precious.
My bum hurts heaps now.. any ideas about pain management.. when I first noticed problems we all thought it was a cut and fix it issue. Pain had an easy end date. This is different I know it will probably get worse before it gets better and I'm "over it". I breathe through motions but afterwards it seems to take over, A hotwater bottle to change the site of sensation helped yesterday. I'll keep using that
I have just PM'd you but thought I would write here as well. I am now 2 years out from treatment and it all seems just a distant memory. The cancer is gone and it just isn't game to come back 🙂 I have just had my 2 year check and it's all clear.
Xylocaine is great - I think it's just over the counter from the chemist???? If that isn't strong enough then there is another one available thru the doctor but I can't remember the name...push your doctor for it if you need it.
I bought salt by the kilo (literally!)and almost lived in the salt baths thru treatment, it seemed to dull the pain for the time I sat in the water. I know it sounds like the salt would sting but it was sooo soothing. A sitz bath really.
I'm sorry to say that it may get worse before it gets better but treatment effects everyone so differently and you could cruise thru. You will look back in 3 months and think "wow! I've done it!" The skin does heal reasonably quickly so keep focused on the light at the end of the tunnel...it is there however dim it might seem at times.
Keep in touch. We are here if you need to talk.
Hey Ms Jan
Glad you are getting some relief ... dont forget the value of saline water baths. I found saline water to be so soothing and did it daily, along with honey - which might be a tad more difficult for you to use.
I'm starting treatment this week. Going off to the treatment centre with, juicer, TV, big bag of salt, zylocaine, some herbal soothing vaginal pessaries, and two jars of manuka honey. I couldn't remember who used the honey so i'm glad you sent this post. 🙂 did you eat it, smear it on the target area or both? Waas that before or after treatment sessions? I think that the attitude of the staff at this hospital is that if we want to do things that make us feel good and do no harm then it is fully supported.
About zylocaine, I got it in a pack. "Lidnocaine" with urethral applicator. It is 10 ml in a syringe,with a slim tip that's much easier to self administer than the "ultraproct" in a tube. This might be useful information for anyone with ulcers in hard to reach places.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.