Adenocarcinoma in situ with chronic pelvic pain

Hi everyone! I am 33 years old, and last week, I had a biopsy and the results returned as endocervical adenocarcinoma in situ. I understand that this result is pretty low on the spectrum, but I am concerned about pelvic pain that I've had for the past 3-4 years, which seems to only appear in more advanced cases - the pain is a constant, dull ache that seems to be near my right ovary/appendix. I had an ovarian ultrasound a couple of years ago that was painful on the right but no visible abnormailites. I am waiting about a week for my first oncologist visit, which seems to be passing very slowly, so any insight into any similar experiences that anyone else has had would be greatly appreciated in the meantime. While the cells say stage 0-1, my symptoms are more concerning, so just wondering how this turned out for others in the group, whether it's good or bad.

In case helpful to others, some more info on me - my paps have always been normal, but the US standard is to start to test for HPV at 30 years old, and since then I have come back positive for HPV 16 for the past 3 years. I am an immunosuppressed patient (primarily organ transplant meds for the past 7 years, but also a history of steroids and chemo), so my doctors reassured me by saying that the HPV wasn't clearing because of my immune system, so I didn't go for my follow-up colposcopy until this year. 

Hi!

i am also 33 but had stage 1a1 cervical cancer aged 25 at my first smear. also low on the scale of things but I also had this dull ache for approx 9 months before. it was exactly how you describe. But it was dismissed as cancer wasn’t advanced enough for that symtom to be relevant.

i have had clear smears (6 monthly for a while, then yearly) ever since.

however only just had a smear since dec 2015 due to pregnancy. Dull ache has been back for about 2 months so anxiously waiting result. 

Thank you so much - that’s really reassuring. I’m still a couple days away from my first oncology appointment and trying not to think about it too much! I hope all is ok with you and the ache is still nothing ❤️ Good luck!

Hi ladies. i wonder if you can help me. I have been diagnosed with cervical cancer.. I have just undergone my MRI but I don't have any symptoms other than bleeding which has now stopped? is this normal? xxx

Hi Misscoup88

I had heavy bleeding which wasn’t diagnosed as anything until histology after total hysterectomy revealed that I had CIN3 carcinoma in situ. My case is slightly more complicated and complex but I have pelvic pain and am worried that something sinister is happening within my vagina as I have no cervix but don’t seem to be getting any clear answers.

Have you been given an prognosis following your diagnosis? 

Jayne xx

Hi jayne..

 have been told that the cancer is a squamous cell carcinoma and it's just coming out of my vagina now so Il be having radiotherapy and chemotherapy and brachytherapy.. she said it's a good prognosis and it hasn't spread to my lymph nodes.

i have had a bit of leg pain since but I just think its all in my head at the moment.

how are you doing at the moment?

xxx

Just want to give an update to anyone reading this thread. I had a cone biopsy this week and will wait another week for the result, which will determine whether a hysterectomy is required. The cone biopsy (aka conization or cold knife biopsy) was really easy under general anesthesia. The only pain I had was directly after I woke up from the procedure and I haven’t had any bleeding so far. I also had an ultrasound to look at what might be causing the pain on my right side, which was normal so looks to be unrelated. Wishing everyone the best - will keep this thread updated in case anyone finds it helpful in the future. 

Results of come biopsy were upgraded to early stage invasive cancer (rather than in situ) but margins were clear. Next step is either another cone biopsy or a hysterectomy. Will get further guidance in a couple of weeks.