I've just had my appointment following my scan results and they have found that there is no wide reaching spread of my cancer which was diagnosed following what I thought was a routine hemmheroid op, and they can treat using chemo-radiotherapy. My cancer is T4 I believe if that means anything to anyone because it is pressing against my vaginal wall though it has not broken through. I've got my head around the treatment. I was relieved following my first meeting with the Christie that the cancer hadn't spread beyond my pelvis and was positive after the meeting but Reading about my staging has frightened me again. I've thrown the booklet away now!
I'm mainly frightened that between now and my treatment starting that it will push through the vaginal wall (sorry fellas).
Thanks so much for this forum. It's useful to read other stories of people's experiences.
Just popped on the forum and saw your post so had to message you. Sorry to hear your cancer was found during a hemmorhoid op. I was actually due to have an op for a stage 4 hemmorhoid but after asking to see my consultant again with concerns she sent me for a colonoscopy and my cancer was found. If you click on my photo you can read my profile.
I was actually diagnosed Stage 2 (as no spread) but T4 due to the tumour growing towards my vagina. So sounds similar to yourself. I completed my chemo radiation treatment in August 22 and had my 12 month scan in August which was clear. So i don't want you to worry about the staging i was the same when they said T4. Better not to Google too much i think!
You will find this forum so useful going through your treatment and beyond i couldn't have managed without it and still like to pop on. Everyone here understands what you are going through and are here to answer all your questions.
Hope you aren't too long waiting for your treatment to start.
Thanks so much for taking the time to reply. It's been a scary time. I'm now going through the decision making process about whether it is worth freezing my eggs or not due to the treatment. It has all been a lot but I can't say it was too much of a surprise as I just knew there was something wrong. I know I can cope with the treatment physically. Mentally it takes a toll doesn't it though? Thanks for sharing your story. I'll post mine one day when it feels a bit more manageable.
I am glad you have found us but really sorry you had the need - the first few weeks are so frightening and I must admit when you wrote that you threw the booklet away it struck a chord with me; the booklet I was given in later chapters went on to describe end-of-life care and I really didn't need to know that, the diagnosis itself was enough to deal with and the booklet went out in that week's recycling!
Just about everyone on here has gone through, or is going through what you are experiencing right now and who remember just how frightening and confusing it all is. The waiting is the worst, but once the team has put together a treatment plan for you, you will feel a lot more in control of what is happening to you. The chemo/radiotherapy is tough but we have lots of tips to help you get through this. So please come back and let us know when you start, and of course we are here at any time to support if you need it, or if you just need to let off steam.
This cancer seems so scary, it's so close to all these vulnerable bits! I didn't even get a booklet, just good old Google and some pamphlets. I really wish I'd found this forum at the beginning of my journey, it would have been a great comfort, but better late than never.
They tend to move fast with the treatment once the diagnosis is set (with a few alarming exceptions as we've seen on this forum) so I'm hopeful and confident that they'll get you in and going soon.
Hang in there!
Hi Feather 653 ,
Apologies for being a little late to the party so to speak but welcome to the Macmillan online community although I’m so sorry to hear of your recent diagnosis. It’s positive news that it’s contained & you don’t have any mets. Hopefully things will move quickly now & you’ll have a treatment plan in place very soon. As far as I’m aware your staging (T4) relates to the size & position of your tumour, there are 2 more elements to your staging ‘N’ which will be followed by a number if you’ve any lymph nodes affected then ‘M’ followed again by a number for any metastasis which you’ve already been told you don’t have. I was luckily diagnosed very early stages so for me my staging was T1N0M0, I hope that helps a little.
We all understand the anxiety that accompanies this diagnosis & we’re here to support you however we can.
I too had bulky disease in the rectovaginal wall. I had to have a GYN exam and multiple cervical biopsies as they thought I might have cervical cancer and/or invasion from the anal cancer. All biopsies were negative!
You sound young, talking about egg retrieval, and yes the radiation will affect your vagina. Ask if you can have a vaginal dilator for use during your radiation treatments. I did, but even so I have some vaginal stenosis. Apparently the stenosis or narrowing continues for about 2 years after radiation. Also my vagina is skewed off to my right. I didn’t use a dilator after treatment ended as much as I should have, so I do have pain with vaginal penetration that rapidly goes away. Luckily I didn’t have a fistula, so I’m thankful for that.
I was Stage 4 at diagnosis, but at 18 months I’ve been told I’m “cured”. I’m very happy with that, but I don’t think that enough time or effort is spent discussing the possible ways this nasty diagnosis can affect future functioning. Las weekend the American Anal Cancer Foundation had an online conference for patients, doctors, and caregivers that spent a fair amount of time discussing these issues. They emphasized the important role of Pelvic Physical Therapy. I had to discover this by myself and luckily the PT group I found was wonderful!
When you’re at the beginning of this trek, some of the vast amount of information thrown at you is hard to deal with, like the issue of vaginal fistula. Try to take it one day or week at a time. You most likely aren’t going to have every side effect that you hear about, as every person with this cancer is different. If sexual function after treatment is of concern, then be sure to ask questions, etc. I have a feeling that due to my age at diagnosis (69) my doctors were surprised that sexual function was important to me, lol.
I haven’t seen much about this issue on this site, but I think it’s more important than folks know, just harder to talk about. Initially most of us are very worried about survival, but there are many who are considered cured or at least in extended remission. So I’m happy to discuss life after anal cancer!