Adenocarcinoma in situ + Crohn's Disease

Hi all,


I was diagnosed 2 days ago with adenocarcinoma in situ following a LEEP 7 days prior (clear margins). I wasn't expecting this diagnosis during my follow up AT ALL, so I mostly sat in shock on the table while my doc explained things. I didn't have my questions ready to go beforehand as I usually do. Please help!

My doctor and I were both very surprised at this diagnosis as I'm only 27 years old. She said that if I were older, we'd be doing a hysterectomy, which completely freaked me out. I have been married for 2 years, but we weren't even thinking about having kids until I'm in my early 30s. We weren't even sure if we wanted kids at all, but this diagnosis has occupied my mind constantly for the last 2 days and has me thinking a lot about the kids thing. It would feel awful having that choice taken away from me, so I am genuinely petrified. I am also so scared about everything a hysterectomy brings on (menopause?) Can anyone speak to the effectiveness of conization as treatment? Were you able to have kids after, and if so, how much time did you have to get that done? Am I headed toward a hysterectomy indefinitely, with conization, etc. just buying me more time?

I am also so worried that since AIS is glandular and sits further up, that what she caught in the LEEP is a symptom of a bigger problem happening further up. All she recommended was a pap in 3 months, no scans or anything. What if there is something growing further up in the canal right now? 

On top of the AIS, I have been managing a Crohn's disease diagnosis for the last 6 years. My treatment for the Crohn's involves getting immonusuppresent infusions every 6 weeks. I feel in my gut (ok, I know that's certainly not scientific) that these infusions haven't allowed my body to fight the HPV off and continually have me landing on the "unlucky" side of the statistics with CC. Does anyone here have experience with Crohn's and CC? I have an appointment to discuss this with my GI doctor in a few days. 


Can't help at all with Crohn's implications, but can chime in with AIS. 

I live in the US, so the info I am passing on is American; information in the UK or elsewhere may be different.

It usually takes around 5 years before the AIS invades and becomes a full, stageable cancer. Treatment is usually a hysterectomy or a conization. The conization would have to show clear margins. The cone is usually offered to young women who haven't had kids yet, with a view to having the hysterectomy once the family is complete.

There's definitely time for you to have a good think about what you want to do. Ask your doctor tons of questions. I'm an adenocarcinoma girl myself, and we went ahead with the hysterectomy because of the 10 -15% chance of skip lesions.  I had a cone first, with clear margins, but we wanted to be safe. I had already completed my family. My doctor would have offered a trachy had I been younger and wanting kids.

Good luck

love t xx