Hi I have never posted anything before but have been reading and wanted to ask a few questions. I am in the US and have had annuals since I was 18. I have 3 boys and I am 39. I went 11/30/16 for my annual check and it came back severe dysplasia I had a copo and ECC done on 1/4/17 which showed adenocarcinoma in situ. On 1/16/17 I had a LEEP and a D&C done and now waiting the results.
My doctor has been my doctor for the last 15 years and has delivered two of my children. I trust him and he is overly cautious. However I have some questions as this is all new territory for me.
If my margins come back clear should I still go see an oncologist obgyn?
Should I request a PET scan regardless?
Has anyone regretted not removing their ovaries at the time of their hysterectomy?
And if anyone has anything else to add information wise regarding adenocarcinoma in situ I would greatly appreciate it.
Hello!!
Welcome to the forum but sorry you find yourself in here!
I am a adenocarcinoma girl, had Lletz, then cone which came back clear (thank the lord) I also had a hysterectomy and kept my ovaries due to my age (32). Initially I said take them but I was told there was more risks in taking them away than keeping them health wise...increase risk of heart failure, osteoarthritits etc.
I never had a PET scan either although I do wish in a way I did as I become obsessed with my lymph nodes but I am a very anxious cookie anyway! However it seem they do not always scan (PET, MRI and CT) for stage 1.
I am based in the U.K. so you guys overseas may do things slightly different over there but ask away in here as there's a good few adeno girls in the us!!
Take it easy take care xxx
Hi L
I'm in the States and an adenocarcinoma girl too.
I'm guessing that you have your smears done at your Ob-gyn and that he has done your subsequent tests/D&C. That's what mine did. When the cone biopsy came back with a problem he referred me to a gyno oncologist and she became my doctor. She did my hysterectomy and she is doing my 6 monthly checks for the next 5 years.
My gyno is also conservative, which I like. If you read my signature you'll see why.
Incidentally, although my doctor requested an MRI and a PET scan, my insurers declined to pay for them. At very early stages of CC they think the risks of any spread are so tiny that it doesn't make statistical sense for them to shell out. I've never had an MRI. I did have a CT scan and, funnily enough, a PET scan - although that was due to an unknown blob on my liver showing up in the CT scan (completely unrelated.)
I kept my ovaries after thorough research and advice from my gyno onc. They do offer health protections against stroke and some other things. CC and ovarian cancer are not linked (unlike ovarian and breast cancer, which are both hormonal.)
Hope that helps.
love t x
Thanks so much for your reply. I may have more questions after tomorrow's appointment then get the results from my LEEP and D&C. Where are you located in the states?
Thank you for your reply I really appreciate it!
Update...
im more confused now than before. My LEEP came back clear, the ECC came back clear but the D&C showed adenocarcinoma in situ. Has anyone had this before?
Hi L:
Sorry for the delay, I was traveling.
Just wondered what your docs were recommending for you.
I am also curious what your doctor recommended from this point?
I am new to this page and my situtation is similar to yours.
Hi-
I have adenocarcinoma in situ. I found this out after requesting a second opinion and asking my gyno to refer me to an oncologist. The reason I made this request is that from 2013-2016, my smears came back abnormal. My doctor would do a colop (sp?) And say everything was OK and request to see me again in 6 months. After this went on for 3 years, I wanted a second opinion and felt like nothing was changing. I am so glad that I did. Within 4 days of being referred to an gyn. Oncologist, I had a cone biopsy ordered I found out that I had adenocarcinoma, the intestinal type. I am 38 and it was recommended to have a hysterecotomy. 6 months after my visit I had the hysterectomy and kept my ovaries. There are better long term effects to keeping ovaries. Most cancers attack the tube so with those gone, my doctor did not feel that my ovaries would be in danger. I feel that if you feel that something is not right, you know your body the best and should always get a second opinion. I am so glad I did, after my hysterectomy, I found that a skip lesion was growing higher up...I did not have to have radiation but if it had been a tad bigger I would have...good luck to you! Ps I am from the states and my oncologist told me that adenocarcinoma is very hard to detect through pap smears. I am so glad that I did the cone biopsy!
Adenocarcinoma is hard to detect through smears because the cells are kicking off up in the cervix and not just lolling around on the face of the cervix waiting to get scraped up during the pap. It's not until one of the glandular cells appear on the face of the cervix that a smear can pick up the problem. It's then that the doctors have to find out where those glandular cells came from. They generally have a look in the cervix in the most likely place, and then they have a scrape of the womb to see if they're coming from there. Sounds like a trachy or hysterectomy may be on the cards.
Keep us posted.
love t x
