Anal scc / Ain 3 surveillance

Hey everyone,

I got diagnosed with Anal SCC last year and after being on surveillance for AIN and VIN 3. for the past 3 years. I was lucky that it was a small SCC and was removed by my colorectal surgeon.  I now have to have EUA every three months which i have been cancer free for the past year. However 2 months ago a lump grew quickly on the opposite side and i had it removed. However due to a poor medical history 4 weeks later i still have an infected unhealed wound. And today i got a letter saying I'm back on the waiting list for a EAU IN 6 weeks. How does everyone mentally cope with the continuous surveillance and the complications it causes?? Plus the fact you have to wait weeks before you no the results of your previous surgery?? The fact I've been told this is my life now for the next 5 years of Surveillance makes me feel like I'm going to have a poor quality of life until then. Any one else in a similar situation or just wants to get in touch to share their AIN journeys?? 

  • Hi Kaylee87, 

    Sounds like you’ve been going through this for a while, I was told i had AIN3 five weeks ago by my gastro team, and referred to London ,its been a ling 5 weeks…   Thankfully found this forum and its been such a help. Anyway, was seen last week, and told that i likely also have VIN, biopsies taken, and now 1 week into the 4 week wait for biopsy results. Dr mentioned laser surgery for the AIN3 and VIN… but everywhere I read says surgery is first line treatment for the VIN… so again more questions than answers.

    Was also told I would be a lifeling patient due to the likelihood of recurrence and due to me being on methotrexate.. I live 7 hours away from the the hospital. But i am glad, as if I hadn’t been referred there the VIN wiuldn’t have been found. 

    I just feel like i’m in limbo, the not knowing whats next, its constantly on my mind, I’m off work this week as the biopsy site is really sore, but not sure whether to go back before results..

    Anyway happy to chat here or directly. Take care x

  • Hi Kaylee,

    Wow, that sounds really, really tough! I cannot IMAGINE trying to cope with an unhealed infected wound on top of everything else! How on earth will a EUA happen under those circumstances??

    I"m grateful that an EUA is what found my cancer, after literally YEARS of bad (or no) diagnoses. But I found it soooo painful, I'm flinching at the very thought of having it every 3 months. 

    It seems to me that what you and I and probably everyone needs is a place where the buck stops. A medical professional in charge of balancing and collating all the stuff from all the doctors and surgeons and techs and nurses and admins who flood us with information, someone who can sort and direct the flow for us.

    A pipe dream, I guess.

    I'm sorry I'm not more helpful. All I can offer is sympathy and an ear. I sure hope you find the mythical unicorn Unified Medical Organizer soon!