EndoCa: First meeting with Gynecologist Oncologist

Hi,

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.

Hello,

I had Complex Atypical Endometrial Hyperplasia and had good news. My final pathology report said Stage IB Uterine Cancer, but it was contained within the uterus and no further treatment was necessary. I was also told initially that I had Stage IC Ovarian Cancer and I thank God for my doctor every day. He didn't believe I had Ovarian Cancer and immediately referred me to a Gyn-Oncologist. After further review of my pathology by the local University Hospital and then Stanford in California (as a third opinion), I was told it was borderline or Low Malignant Potential.

What I don't understand is why you need to consider Gastric Bypass. I don't know how much you weigh and I am not going to ask you, but think that weight control is something you should discuss with your Primary Physician. Is it something you want to do? If so, do your research before you agree to it. My surgery included the removal of my omentum because the doctor said cancer could be found there so it was best to remove it. I am overweight also and, even though I have not been on a strict diet since my surgery 12 years ago, I am 10-15 pounds less than I was after surgery. I have never considered bypass surgery and, if necessary, I would prefer to go on a strict healthy diet. You can eat things you love, but in moderation.

Please take care of yourself and focus on this one surgery for now. You will have plenty of time during recovery to research weight loss options.

I will definitely keep you in my prayers.

I have very similar case as yours - I think your detailed account is goings yo be soooo helpful for people on our road - I know I read so many posts,to,get an idea of what was going to happen and to be informed and know the questions to ask.

I am now day11 and had DvH and really pleased with my recovery. I felt really well prepared reading all to expect so know I HAVE to take it easy. I am taking it slow and have had funny pains,with bladder/bowel when using them - but reading through post this is not unusual. I have been very conscious of prunes/stool,softener even before surgery to make sure there was no "backlog" and to date this has gone well and I am really pleased with this as this can be a massive problem - funny the things that can please us!!!!! 8 had now enema or bowel prep before,surgery.

I am,lucky I could sleep on my side from day 1 - I cannot sleep on my back so very grateful for this.

I go for my 2 week appointment to get biopsy results - I was grade 1 stage 1b before surgery

Good luck with your surgery

Anne

Hi Sweetie,

I know this is all very scary and confusing right now. The oncologist was very thorough and sometimes this in fact can make one more fearul too. I also agree with another poster re concentrating on your current surgery and later taking time to review the best options for you to lose weight after you are on the mend. Also while being overweight is considered a factor to getting endometrial cancer remember it is only one factor and there are many normal weight ladies here who've been struck by this nasty disease.. I soon will be 9 years past surgery; I was much overweight then and in fact sadly I have gained even more -just mentioning to say weight is NOT the only thing that causes this disease or its recurrence. Of course losing the excess pounds is good for many, many reasons but again pls don't fret re that right now.

I'm sending many positive thoughts out to you and will be keeping you in prayer too. Pls keep us posted and come back in here when you feel up to it.

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Thank you for your replies. On my weight - I am considered morbidly overweight. I have thin arms and legs, everything is around my hips and lower abdomen. The fat over the years seems to have shifted like a I had a magnet there I will think carefully on the bariatric solution. I have a niece who had it, and yes she did lose a lot of weight, but she traded health issues for other serious health issues. She now looks like a concentration camp survivor, she is so thin. She can't put on weight and has nutrition deficiency. She has severe rib pain as her rib cage had widened to support her organs when she was heavy. Now there is nothing there; they are free floating. My other hesitation is one: I am squeamish about losing so much of the intestines. Can't help but think I might need those if I make it to my eighties or nineties. Second, I do like food and family gatherings and eating a tablespoon at a time, just sounds depressing. I had lost a about 50 lbs on a low carb diet a few years ago. It didn't do a thing for my diabetes, still had to take same amt of insulin and I found it expensive to maintain. Unfortunately, the weight has creeped back. So initially I will focus on exercise and reduced portions as a start and go from there.

The doctor also mentioned that the FDA is approving a new process called a gastric sleeve. Its supposed to be safer. I have no idea what it is, but I'll look into it later.

I don't jump into these things - I waited a LONG time before I decided lasik eye surgery was advanced enough that i felt it was ready for me and my particular situation. I am very glad that I had it now.

Oh one more thing. The Oncologist told me that I have a hernia. I have a extra 'mound' above my belly button that is round and extends up. Its about 6-8 inches around. I always thought it was an extra layer of fat padding. He said that most women have it, especially if we are overweight. Our body compensates and the muscle tissue expands apart as we grow 'out'. He said it can be fixed, but won't stay fixed unless significant weight is lost and stays off. He says a lot of doctors make a good amount of money fixing and re-fixing them.

It has never bothered me, so I will not worry about it for now. But wanted to add that in to the appt information.

Hi again Sweetie,

Glad you will carefully think over your doctor's suggestion re surgical weight loss, if medically necessary I guess it can be a blessing. Also like your idea of focusing first on natural means such as portion control and exercise.

For the immediate future you need to focus on healing after your surgery and getting your energy back, etc. .If you adopt a healthy diet and incorporate daily exercise (walking to start?) this would help with healing as well as weight loss.

May your upcoming surgery go very well with zero complicatons and good results. Pls drop back in post op when you feel up to it.

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Hi Hamsterzilla

Thanks for sharing your story with us. I know it will help new ladies that are just starting this process, too. I think that doctors are so quick to jump on overweight as the cause of everything. I wonder if they really understand how hard it is to lose weight and especially to keep it off? Everyone that I've known that had gastric bypass surgery ended up with some kind of health problem.

I think that what we really need is an eating plan that we can stay on the rest of our life that isn't too strict but allows a slow weight loss that can be maintained. That's what I'm trying to do right now anyway. I've lost about 60 pounds really slowly over a period of 2 to 3 years and I've kept it off so far!

I know you're feeling pretty anxious right now the day before your surgery but it will go fine and you will go on the road to healing. I'll keep you in my prayers, too! It sounds like you have a great onc surgeon and I 'll pray that they don't find anything else and the path report comes out with good news!

Hugs and blessings for peace to you!

That was a thorough report, I'm sure it will help many ladies. I'm glad you will wait to research WLS (gastric bypass or Lap Band) for later---they are not right for everyone, and although he meant to be helpful, you need to go one step at a time. Dealing with cancer surgery is enough to deal with all on its own. It's stressful enough. I'm glad you did get a Dr who has time for questions and reassurance. I hope all goes well with surgery, and you have an easy recovery.

thank for going over your appt so thoroughly. My 1st appt with a onc-gyn is this upcoming Monday so i have definitely have been excited/anxious about it.