Stage 1 Endometrial Cancer - Now what

WalkingMom

Hello everyone, I am new here. I just had surgery for Endometrial Cancer. The pathology report came back as stage 1. The GYN oncologist said I am cancer free and that I should return every 3 months for 3 years and then every 6 months for 2 years and then once a year for life. That is all he said. I feel like there should be more being done. Are there any scans that should be done, etc. I am very grateful that it is stage 1 but I feel like it is not being taken seriously because it is stage 1. Am I worrying about nothing? Any advice or words of wisdom would be appreciated. Thank you.

oldbeauty

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

Kathy G.

Hello Walking mom!

I, too, was diagnosed as stage 1 11 years ago, and was asked to follow the same 5 year treatment schedule

I have had no uterine or other cancer diagnoses since then, but like Old beauty said you always stay vigilant.

Her suggestions are valid I had grade 1 and the 'garden variety ' type cancer. I only had 11% penetration into the uterine wall. All my check ups went well, and I was actually relieved I didn't have to have scans bc waiting for biopsy test results was stressful enough, and I suffer from medical anxiety as it is

But if you feel like you could benefit from further testing to put your mind at ease go for it!

Sounds like you are very lucky as I was. So many of the ladies on this board have really been thru a lot, but were always willing to come back & share their experiences to help others here.

God bless!

NoTimeForCancer

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.

bevboone

Hello,

I am recently diagnosed with Endometriosis Adenocarcinoma, FIGO Grade 2. I will meet with the gynecologist/oncologist on November 14, 2024. I am 73 years old. I'm grateful that my retired nurse sister will attend the first meeting with me. Her support means the world to me.

Getting to this diagnosis took months of getting the wrong diagnoses — UTI , Negative Pap Test, and dismissal of my ever-increasing symptoms with each reveal. I finally found a wonderful gynecologist who listened and identified the source of the bleeding, my only symptom for months. My diagnosis is scary. Maybe I should be braver but everything about the diagnoses is unsettling. I know it comes with challenging days and no easy treatment plan.

My emotions are all over the place, from being frozen in fear to believing all will be well to thinking the diagnoses is wrong. I worry about making the wrong treatment choice. Do I have time to seek a second opinion while this cancer remains unchecked?

I appreciate the advice to take one day at a time and not to become overwhelmed, although I feel like I have a ticking bomb inside of me with every twitch in my stomach.

I am prayerful. I haven't shared my diagnoses with friends. I may do so soon as it's a burden to keep such a difficult secret when I need so much support and love.

Thank you for giving me an outlet to express my feelings and fears. God bless all of you brave and beautiful people.

Mercorby

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.

Forherself

https://csn.cancer.org/discussion/comment/1718815#Comment_1718815

Welcome Bev. Your post sounds a lot like my experience. I was diagnosed with serous endometrial intraepithelial carcinoma, so type 2. I did not talk to my friends about it. I was I shock and could not answer their questions anyway. I was trying to learn myself, and I am an RN. It is very scary to be told you have cancer and all the unknowns are equally scary. First, your surgery needs to happen. There is a lot of information here about how to prepare yourself and what to expect. Surgery is treatment, and staging. A plan cannot be made until you are staged. I don't read any studies over than 5 years. Treatment has improved so much. After surgery I was given the choice to have treatment or not. It is hard to decide. I chose no treatment because it was an option, not common. I was told I could recur even if I had treatment. We are here for you as you go through that process. I also had moments when I thought maybe it is a. mistake. I think it is a defense mechanism. I am 6 years out now nor recurrence.