Radiation Proctitus

[JPnSD]

Anyone had a frank discussion with their GI people about whether any level of anal is possible with this condition? This is a good example of how medical staff are not tuned into gay men and prostate cancer.

[NYC_talker]

Are you experiencing this right now from radiation? Or asking just in case?

Before getting my treatment I did speak about the possibility with my gastro doc, who is gay.

He is the one who brought it up -- and said if there's any problem he'd be able treat me for it and, yes, with the goal of resuming anal sex.

I also had discussions with RO and urologist, who didn't seem concerned it would be a problem (I had LDR brachytherapy a year ago). After treatment I had more inflamed hemorrhoids, but that was the extent of it -- and they eventually subsided. I take in more fiber and now have less of an issue with them than before treatment. Anal sex has been as pleasurable as before.

Also, I had to get a colonoscopy 6 months after treatment (I had one before treatment but the results were incomplete) and my gastro doc, who performed it, said all looked good, no issues from the radiation, including lower down. I was glad to have a gay doc doing it and looking out for that issue as well.

[JRPnSD in reply to NYC_talker]

Recently diagnosed with this condition 20 months post radiation treatment. Awaiting evaluation with GI specialist and a sigmoidoscopy.

[NYC_talker in reply to JRPnSD]

You should think about speaking with a gay GI specialist or someone who understands your concerns.

[JPnSD in reply to NYC_talker]

The proverbial needle in a haystack when one is enrolled in a Medicare Advantage Program and dealing with the realities of healthcare in the US. There are very limited choices when receiving a referral to a specialty (if any). Thanks for the thought though.

[Darryl Partner]

FYI: youtu.be/o0b5TK-2MB8(Not working as expected?)

[JPnSD in reply to Darryl]

Thanks Darryl. Very helpful. I will be sharing this with all the members of my care team. It provided me with questions and talking points for my interactions with the GI Specialist.

[AlvinSD]

I’ve only had one doctor even broach the topic of sex or sexual function during this entire journey. Even the clown show of Urologists I had never asked about or did any sort of assessment about sexual function. Any talk about sex let alone male/male sexual function is sorely lacking. It’s been very difficult for me.

[Darryl Partner in reply to AlvinSD]

that’s why it’s important to support our community’s patient advocacy nonprofit Malecare.

[Tall_Allen]

I talked to my RO about it.

[novatimo in reply to Tall_Allen]

I had radiation in 2015. A colonoscopy in 2016 showed very light radiation proctitis. I spoke to my non-gay RO about anal and he warned that those tissues are now very delicate and any trauma to them during anal could result in severe bleeding (not simple hemorrhoidal bleeding, but serious ER-visit bleeding). This could have been his ignorance (or homophobia) speaking. But TA what did your RO say about this? And has anyone here had radiation proctitis and experienced severe bleeding after anal?

[Tall_Allen in reply to novatimo]

He said to let it heal for at least 3 months, and to try it slowly after that. If it hurts, stop.

[JPnSD in reply to Tall_Allen]

When symptoms appear 20 months after the end of radiation it I fixates a chronic condition. I will be having a detailed conversation with GI Specialist after the procedure and update this post I have already waited 10 days to even hear about scheduling.

[Tall_Allen in reply to JPnSD]

There are late-responding tissues, where side effects do not show up for a year or two. I had urinary issues a year after SBRT. They disappeared after a couple of months, and were not chronic - I never had those side effects again. It is called "late -term side effects."

[JPnSD in reply to Tall_Allen]

Thanks, good to know. Seeing as these intermittent symptoms have lasted 8 months now....fingers crossed....but less likely.

[renegade70]

personally, i would not. especially if you have had radiation or even biopsys.