My surgery is in 2 days (7/18). (Please put me in your prayers for a positive outcome).
Today I had my pre-op appt and met for the first time with my gynecologist oncologist. I had asked a lot of questions in the forum on what to expect and thought I would share my experience for anyone who may also be preparing for their upcoming surgery. I will warn you that there is a lot of text. I'm writing down as I remember it so it will wander a bit.
First some background. I had a D&C on June 14 and thought all was well. Two weeks later received a call from my regular gynecologist that the biopsy came back with Complex Endometrial Hyperplasia. My doctor told me it was pre-cancer borderline cancer (the test couldn't really decide) and that I would require a total hysterectomy. He referred me to an oncologist who did robotic assisted surgery and told me the surgeon was in the top of his field. So as with others I have been worrying and stressed about this. I've been concerned that this is the tip of the iceberg and the beginning of a nightmare.
I spent time before appt reading through this site and preparing list of questions to ask. On the day of my appt I had my sister come with me. I was very nervous and wanted some moral support, plus I wanted someone to help me with questions and remembering the answers.
At his office and the requisite paperwork, we met with his nurse. I really liked her, she was very encouraging and upbeat and obviously had a lot of faith in this Doctor. She did the usual temperature, weight and blood pressure check, and then asked questions like allergies, medications, prior surgeries, number pregnancy etc. Then the PA came in and asked more specific questions about my cycles. What makes my case a bit different than some is that I am not in menopause, I wasn’t having any unusual pains or spotting. I have absence of cycles and had not responded to any treatments that had been started back in February.
Finally the Oncologist came in and asked me what my regular gynecologist had told me, after I told him he smiled slightly and told me that there was no such thing as pre-cancer. He said it was a way that some doctor's did a 'soft shoe' in delivering bad news. He said you either have cancer or you don't. Pre-cancer is actually cancer classified in early stages as Stage 1, Grade 1A and until the pathology reports come back after the surgery that was what he is starting with for me.
He told me that they will disconnect the uterus, ovaries, tubes and top of cervix using the assisted robotics and removing the tissue vaginally. If the tissue looks suspicious at that time he would take a sampling of lymph nodes from around my stomach area in a separate procedure then. He said he would do a pelvic wash, but if any cancerous cells were found, there wouldn't be any further action. He explained that past procedure was to do radiation treatment but that it has been shown to have little effect. He told me that the test really didn't provide much value because it was too vague. So now they run the test, but do nothing based on that. I wish we had spent more time on that topic because I don't understand it fully, but the topic changed and I never remembered to revisit it until later when I had time mull the day.
He told me that 97% of the cases like mine, require no further treatment. He also quoted another stat of 86% which I think was related to ovarian cancer, but to be honest my head was spinning with stats. I will have to ask my sister if she remembers what that was specific to.
The Oncologist did say that he would see some of things around the uterus in the cavity, like the bladder or the bowels and rectum, but not any around the stomach or behind. He would not test the abdominal fat layer for cancer. He said he would not do a bladder tack. He said that if in the future there was ever a need for radiation treatment, the webbing caused chronic issues that would be worse than the problem that had to be treated. He expected that I would have a 1 night stay in the hospital, but if anything unexpected came up that needed addressed it could be as long as 5 days. He gave me the laundry list of everything that could go wrong or increase the surgery time. I'm sorry I don't remember them all, but I remember it just scared me all the more. Like when I went to Lasik surgery. I wasn’t that scared until they read to me all the potential risks and things that could go wrong.
The doctor told me that he has done 400 of these surgeries (robotic) without any issues. He also told me that he is only one of a few that could do this surgery. In fact, he said he was in the top 5 of the country.
I have an ovary/tube that is adhered to the side wall of my body and he was confident he would find it. He said he expected the surgery to take about 2 1/2 hours if no issues. I will have to have a trach tube (ugh) and be fully unconscious for the procedure, I may have to have an episiotomy. Pathology will take about a week to come back for final staging diagnosis.
He told me that after the surgery no hormone therapy. He said my condition was caused by a combination of too much estrogen from ovaries and from being obese and the layer of fat around my abdomen creating estrogen. He said he did not advocate progesterone as a counter, that it caused issues like with blood clotting. He also mentioned that it has been found to increase weight as much as 10 pounds for every month a woman takes it. Which then adds tot he too much estrogen problem. He thought that my ovaries were putting out little estrogen now, but the ring of fat was putting out enough estrogen that I would have little change in how I feel.
On the day before surgery, he told me I could eat as normal, but not after midnight, and in
stead of the bowel cleansing mix, I will have to do an enema in the evening and again in the morning before surgery. I have to shower the night before and the morning of to minimize germs as much as possible. All bedding was to be washed and changed.
He said that after surgery I will need to do a minimum of 3 hours a week of any type of exercise (light to medium). that it has been shown to reduce cancer risks by 30%. He told me that because I have been diagnosed with Endometrial Cancer that my chances for colon and breast cancer is increased. After the surgery they will schedule me for a colonoscopy and mammogram. The mammogram I was going to do anyhow for my yearly, but I hadn't planned on the other. He also highly recommended that I look into a type of gastric bypass surgery in the near future. He felt that it would reduce my risks considerably.
Overall, he did spend a good amount of time with me and patiently and thoroughly answered my questions. He was very forthright and I didn't feel like he was trying to sugar coat. I spent about 2-3 hours in his office. Afterwards, I was sent to pre-admission testing. The lab took blood for A1C, an Xray of my lungs (I have had severe pneumonia many years ago, and he said they wanted a baseline), and an EKG, plus I had a hundred more health questions to answer. An upper and lower CT scan was not ordered. He felt it unnecessary, though if I really wanted one he would.
I spent about 6 hours all together between both places. I feel tired and numb.
I know the surgery is necessary, but am still scared and worried. I just want it over with and my life back. I know that won't happen anytime soon. I'm slightly more hopeful about the outcome of this surgery, and am praying nothing worse is discovered. Then I have all these other procedures to look forward too and I know I will worry about the findings of these too. I had made lifestyle changes, but obviously it wasn't aggressive enough. So I will have to look into the gastric options he talked about further.
I hope this is helpful for anyone reading this.