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.

Mercorby

https://csn.cancer.org/discussion/comment/1718859#Comment_1718859

Congrats on 6yrs!

NoTimeForCancer

hey bevboone, how are you doing? We are always here, and while I am a little late to the comments, what are your plans for surgery? It is a LOT and overwhelming.

As for sharing information with friends, it is an interesting ask. Most people don't know what to say, and that is ok. I was transparent when asked anything, for me it was more educating people on it all, specifically women who understandably asked "how did they find it?" Good friends will lean in, and that is good.

Please stop back and let us know how you are doing, when surgery is, and anything else.

bevboone

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!

Forherself

You are on your way. I can answer a few. questions. Frequent urination and fatigue are often symptoms of a bladder infection so maybe you can see your family doctor and have that checked too. The dye is injected into your cervix, which is attached to your uterus. The dye then enters your lymph system and identifies your lymph nodes. The surgeon with remove two lymph nodes but will look at the others. If they look normal they do not remove them. This has been proved to be very accurate and avoids lymphedema, a serious complication of removing a lot of lymph nodes. Some women have had 20 removed with. no cancer in them. They will do a biopsy right during surgery so if there was some cancer in a node they will remove more. This was a new procedure when I had my surgery but it accepted treatment now. And since lymph nodes are part of your immune system which can fight cancer, I think it's great to keep them. You will probably be on your back with legs in stirrups for surgery. The surgeon can remove the uterus through the vagina. Again, mine was large and so my surgeon made the puncture holes and then decided to do an incision too. I don't mind that. They will decide when they see what they are working with.

You must have endometrioid type cells, but not grade 1, grade 2. That makes it a little more aggressive. You can find lots of. information about the surgery here. I found recovery very easy. Make sure to move lots. I waited month for surgery and was still early stage. We are happy to answer questions here. It is a lot to take in. It doesn't happen in a day.

NoTimeForCancer

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.