Please Advise, I'm Overwhelmed

Tdavis909

Hello, friends.

I am really hoping some of you might be able to chime in on my situation as I am overwhelmed and don't know what to do. I went from never having a period (years) to having one 50% of the time, and they were painful, long and heavy. Had an ultrasound which revealed a thick lining and some polyps. Had a biopsy as well as a d and c. Polyp was removed and came back as Figo 1 cancer. I had an Mri on Monday, and I am pretty sure it reads there is no evidence of cancer. The plan is for a full hysterectomy on Dec. 7th with my regular gyno. Should I be seeing a specialist? I don't want anything to be missed or left behind and want to minimize my chances of reoccurrence. I have my pre-op appointment with gyno tomorrow, but just feel so overwhelmed and confused. I am also scheduled for a colonoscopy on Nov. 30th as I have had ongoing stomach and left side pain, and I lost my 45-year-old sister to ampullary cancer in June of 2022. I trust my gyno but am just unsure how to advocate for myself. Thoughts and advice, please?

Forherself

Welcome Tdavis909. So sorry you are having to deal with this and hopefully we can help. I would want a gynecological oncologist to do my surgery since you had a positive biopsy. That is the usual protocol. I don't know your gynecologist but I have not heard of them doing staging surgery for cancer. You have time to get this right and ask questions about your surgery. Are you having staging surgery? Will the gynecologist remove lymph nodes, tubes, ovaries and uterus? Will biopsies be done during surgery? How many lymph nodes will be taken. Will you do lymph node mapping? Will it be robotic surgery? Some questions to ask. You want staging done.

Tdavis909

https://csn.cancer.org/discussion/comment/1710572#Comment_1710572

This is so kind and really helpful, thank you. Is this necessary if the cancer was removed with the d and c? My MRI seems to read as "No evidence of cancer." I am sorry for all of my questions.

NoTimeForCancer

Tdavis909, your questions are great so please do not apologize!

Ask for a gynecologic oncologist. I loved my gyn as well, but she knew she was not trained to operate when cancer reared its ugly little head. Gynencologic oncologist received specialized training, and in all the areas Forherself has pointed out.

Added note: I remember meeting a woman at a national race for gyn cancers. They went in to surgery knowing she had endometrial cancer, and the gyn felt she was competent to do it since it was "just" a hysterectomy. Sadly, in addition to a bad surgery, it came back. I only met her the one time so I can't report where she is today, but she was mad that her gyn didn't turn her over to a gyn onc. Please ask. This is your life.

Forherself

https://csn.cancer.org/discussion/comment/1710573#Comment_1710573

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.

MoeKay

Hi Tdavis909, I completely agree with Forherself and NoTime that you should have your surgery performed by a gynecologic oncologist. One sentence from your initial post jumped out at me. You said, "I don't want anything to be missed or left behind and want to minimize my chances of reoccurrence." That is a very wise statement indeed and the best way to accomplish that goal is to run don't walk to a gyn-onc and have him/her perform your surgery.

All the best to you.

BluebirdOne

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

Icantbelieveit

My hysteroscopy also came back FIGO I, but I was referred to a gynecologic oncologist. who did my total hysterectomy with pelvic lymph node biopsy.

Is your GYN planning also to do a lymph node biopsy? I just felt better having an oncological surgeon doing this and the pathology came back stating that no evidence of cancer was found in the removed organs or lymph node or pelvic washings, but my GYN oncologist is following me for 5 years. My pre-surgery CT scan also said no evidence of cancer, but the pathology is really what matters, and even with that there is no absolute guarantee that there is no cancer somewhere inside you.

My own GYN preferred to give my care over to "the experts" with a positive diagnosis of cancer. This is totally up to you, but if you already had cancer, it may be best to see an oncologist?

MAbound

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!