Stage 1 Endometrial Cancer - Now what

Hi Walkingom, it would appear you have good news! However, IMO, you are right to be on alert (perhaps not HIGH alert, tho'). You don't say what the pathology report diagnoses as to grade or type. For example, is it endometrioid adenocarcinoma, the most common, or something else more aggressive? And, even if it is endometrioid, is it Grade 1, 2, or 3? If it's Stage I, grade 1 endometrioid then it is entirely possible you are done, except for vigilence as per your doc's statement to you. One of the other ladies likely will respond with a link to the current treatment recommendations.

You could elect to get a second opinion on your pathology (check your insurance and fight for it, if necessary). That may set your mind at rest.

However, I will tell you my own experience was Stage Ic (old classification), grade 2 endometriod, and I had external pelvic radiation and was considered cured by my docs. That's 20 years ago but I have recurred several times (but still here and in darn good shape for 70!). And just this year, a routine colonoscopy found colon cancer. I had surgery, and the pathology came back as a stage and grade that actually chemo was deemed not at all helpful. And, it's like it never happened; bowel function is perfect. But there was no genetic or lifestyle reason for me to get colon cancer.

I have been quite fortunate, all things considered, but I have been on alert these past 20 years, and I keep myself generally up to date on my diseases.

I would urge you to be sure you have a full understanding of your diagnosis and pathology, and go from there. Always trust your body if something feels not right, and make sure you follow on with a doctor you trust and who will take the time to explain things to your satisfaction.

Best wishes,

Oldbeauty

WalkingMom, I agree with the other ladies it sounds like you got good news.

I would consider calling the gyn onc's office and say you have a few questions. I am sure they would be willing to answer you. Ask, as suggested, what Grade was the cancer?

I think there was a lot of good advice from oldbeauty and Kathy G, and would only add the 3 year/2 year follow up is very common schedule.

Please be kind to yourself. You do need some time to process this news. Of course your emotions are all over the place. I've been on this journey since 2015 with 4 recurrences. From my experience, there is a kind of a mourning period and I find that needs to be honored. But also, you can't stay in that place full time. I highly recommend finding some time each day to do something that you really enjoy, be in touch with what makes you you. It's a little reset button.

The National Comprehensive Cancer Network (nccn.org) has Patient Guidelines for Uterine Cancer. You sign up for a free account and you can download the pdf. It might be intimidating at this time to read the book (maybe your sister will), but if you scroll through, you'll see that there are questions to ask your doctor. It's more empowering to go in to the doctor's appointment with some basic knowledge and a specific list of questions.

A little self-empowering trick I use when I go to the doctor is to dress up and wear make up - lipstick, yes (even under a mask). It makes me feel like I'm in charge and ready to handle what is being said.

Best wishes to you.

Congrats on 6yrs!

Hello,

I had my first meeting with the oncologist today for my endometrial cancer. She was very thorough and personable. My best friend and sister were with me. I do not have a husband or children. My one daughter passed away in 2020. 
I was happy to have their love and support. It was a very long day that started at 4:00 am with a 90-minute drive to MUSC in Charleston, SC. My doctor is recommending a complete hysterectomy, which I expected. She said my type of cancer is the most common one of endometrial cancers and is usually slow growing, FIGO 2. I did blood work, EKG, Chest X-Ray while at the hospital.

One thing I did not fully understand as I reflect is the position I would be in during surgery to ensure all of my internal organs are separated from the surgery site. I was told a dye would be first inserted through the vagina to better see something…maybe lymph nodes to harvest? Funny, how much I thought I understood, but feeling foggy on these two issues. I had a big note pad but got so caught up in listening until I didn’t take many notes.

I think she is recommending robotic surgery b/c she mentioned putting 3-4 holes ( holes may not be the medical terminology ) in my stomach to see the area and removing then beginning removal of organs through my vagina. She did say having a small uterus is good, and she examined me to be sure. It’s possible that plan may change. 

She anticipates a 3 hour surgery. ( Her resident said 4). A lot of the pre-surgery happens before the actual removal of organs. I think this is the part that depends on what I can tolerate with the reconnections and holes in my stomach for probing around, along with the odd/different positioning of my body during surgery.

Because of the holidays, my doctor estimates the surgery is 5-6 weeks away from scheduling unless a cancellation occurs. I want the surgery, but it frightens me also. I know I must have it.

I signed a paper, along with permission to operate, giving the hospital the right to keep my diseased organs after removal for research, perhaps to send them to some type of research facility. 

I told the doctor that I am always extremely exhausted and have frequent urination but she said neither were most likely unrelated to the cancer. I don’t know…it just seems that my body is just in free fall with multiple minor conditions taking center stage, but no need to go into all of that.

Now that I am attempting to remember details, I see that I missed a lot of details. I was exhausted and just got in bed at 6:00 pm. 

Thank you for being here and allowing me to get my thoughts out of my head. Your kindness, thoughtfulness, and courage are comforting and inspiring. I live more hopeful and a little more courageously hearing your stories. Thank you!

Adding one thing to Forherself's post, IF you have the robotic DaVinci surgery, you are actually tilted head down 45 degrees. Perhaps she is speaking about laproscopic? I would have to look up to better understand the laproscopic procedures.

IN ANY EVENT, none of this is meant to scare you more. It is overwhelming but I am so happy to hear you had your best friend and sister with you. No one fights this alone.

If you have any questions on any of the surgery and all, you can call and ask the office. They are used to questions because they realize that it isn't an everyday walk in the park.