Please Advise, I'm Overwhelmed

They can't be sure that all the cancer was removed with the biopsy. You want to know for sure. After my surgery they found no other malignancy in my hysterectomy specimen. That is very rare. I hope that is what they find for you but the only way to know is to have the staging surgery. They can make mistakes with incomplete staging.

I concur with the rest of our ladies. Get a gynecological oncologist to do your surgery. No gynecologist sees enough cancer nor does a lot of these complicated surgeries and you want someone who routinely treats cancer, and a lot of it.

When your uterus is removed they will give you a final pathology report. This is where the rubber meets the road. My initial report from the hysteroscopy was UPSC, serous. Upon examination of all of the tissues they also saw clear cell. They won't officially know your final pathology and stage until after hysterectomy. I also had LVSI, microscopic, that was picked up at hysterectomy.

Your history sounds very promising, although everything is very scary in the beginning, you are asking the right questions. Please come back and let us know how everything went. Also a great idea to get the colonoscopy done before your surgery.

xxoo

Denise

As the you can see, the consensus of everyone here is that you should not allow your gyn do your hysterectomy without seeing a gyn oncologist first. That is because while your gyn has the training to find and diagnose cancer, they don't have the specialized training needed for dealing with it beyond that. Maybe the gyn oncologist will be ok with letting your gyn do the surgery, but I kind of doubt it.

There are other considerations besides just simply removing the uterus that others have mentioned above as well as the possibility that the preliminary FIGO 1 staging that your gynecologist is relying on could change when removed tissue (the uterus) gets further tested both during and after your surgery. You need someone who better understands all of the things to be considered, has the know-how and skills to remove the uterus without spreading cancerous cells , has the experience to manage any surprises that may come up during the surgery, has the expertise to answer the zillion cancer-related questions you are going to have, and manage whatever else needs to happen after your surgery. Uterine cancer is a slow growing cancer so you have time to get sent to the right specialist.

You don't mention what kind of uterine cancer you have. Odds are likely that you have endometrial adenocarcinoma because that is the most common type. These days it's very treatable, especially when it gets caught early. Sometimes surgery and regular monitoring afterward is all that is needed. I'm living proof that it's even curable if caught at a late stage and high grade, but you need the right kind of care from the get-go to achieve that. You said you don't know how to advocate for yourself; the first step is to insist on a consult with a gyn-oncologist before proceeding any further with your gynecologist. No doctor should take insult when a patient asks for additional input regarding their care, so don't feel any guilt for needing to put the brakes on the plans your gyn has already made for you. You won't be the first to do it. Getting 2nd and 3rd opinions when you get a cancer diagnosis is all just part of the process of getting through it back to good health.

Go ahead and get your colonoscopy during all of this. The more info your doctors have the better. So sorry you had to join this women's club, but glad you found it!