First post
i've read a few other blogs and i appreciate them all. I think the toughest thing for me is the continuing side effects. I'm more than 2 years post treatment and I can't get over how much my life is still impacted every day. I'm getting pelvic floor PT for the anal pain and constriction from scarring and i'm seeing a urologist for unfortunate changes to my penis. Things I either don't want to talk about with friends or they don't want to hear about - so pretty alone in this.
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Thanks for your helpful message. I have many of the same experiences with providers. Regarding radiation and the penis, the just looked to see that it was up toward my belly. I naively thought the radiation was very directed to the tumor. I’m not aware of any men only sites. That would be interesting to read.
Easterly likes this comment
Dana, I just realized I read your post on the main screen. Normally, we get an email that a new person has joined- but, it only goes out on Tuesdays. So, unless others go to the main screen, plan on getting many more responses next Tuesday. Also, a way to get in touch is to click on the "member" button (top left) then select the anal cancer default, and other default that you choose. (you might want to experiment with defaults) You can pull all the anal cancer people or certain stages or other. If you select each of the individuals "support" button, they get an email, and will know you are here.
Please post another message next week, so everyone can join in.
Well, hopefully you’ll get others to greet you soon!
Please post another message next week, so everyone can join in.
Well, hopefully you’ll get others to greet you soon!
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I hear what you are saying. After a year or two, most of our friends and loved ones just see that we are still alive and not that our affected body parts are permanently maimed. Everyday is a constant struggle. Glad you found this blog and if nothing else, at least you can vent all your concerns and we are reading them.
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So sorry you are dealing with ongoing side effects. Glad you have joined this group, where we talk about it all. I wish you all the very best as you work through these challenges.
You are not alone in one sense...a big crowd of us here all sharing the same problems and want to help!...sorry to tell you but I have some side effects over 12 years out...but far less than they were at the outset. I still only know one anal cancer patient/survivor in person, and most people don't want to hear that name. So we just soldier on. There is little research support for work on side/after effects. In the UK it's known as Pelvic Radiation Disease...at least they're more honest about it! The HPV and Anal Cancer folks are doing some work in the area, and it's worth checking out their website. Hang in there and keep posting!
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Yeah, I hear you. How much to tell friends....fortunately I have few nurse friends, so that helped a lot. I'm a nurse also, so feel free to share. We've seen so much, it's our regular talk 🤣.
The side effects are the worst as far as I'm concerned, but I continue to have improvement as time goes on. And I've used this group to open up to and what a great support group!!
Stay close to us, we are here for you!!!
The side effects are the worst as far as I'm concerned, but I continue to have improvement as time goes on. And I've used this group to open up to and what a great support group!!
Stay close to us, we are here for you!!!
Yes, side effects! For me, it just feels like providers are done once the treatment is done. My list of issues has grown, not that any provider even checks beyond the immediate issue. I think the inability to talk to friends and family is so typical. It's a hard thing for them, to think about (body part)& they want us to just be done with anything to do with cancer. Shoot, most providers still won't even say the word, and say colon cancer, or yesterday one said rectal...(close, but different, I said)
We don't have many men at this blog, I always have thought they are hanging out on men only sites. I'm curious; when you had the radiation, do they protect the penis? It would seem there would be a way to do that, since it is external.
I hope the PT goes well for you.