Relapse endometrial cancer

I learned the hard way that you need to go with your gut. I also followed your exact same protocol. At three years I had return of cancer at one of the incisions from the original surgery. Neither my Primary doctor nor my oncologist took me seriously as the tumor grew in my abdomen and was very warm to the touch. Neither actually looked or touched! In hindsight, I should have persisted earlier. I finally went to a known dermatologist who looked at it, and biopsied it within 20 minutes. Protocol is not to do a scan regularly as we don’t need more radiation in our systems to breed another cancer. I am now at Mayo. After I had the metastasis and was in treatment again, initially I had CT scans every 3 months then every 6. I am now cancer free for 3 years following immunotherapy and they are only seeing me yearly. A second opinion can ease your mind for sure. Peace to you on your journey. I am still on mine.

Hi,
I am new to this site, and am learning so much!
I had Endometrioid Adenocarcinoma Stage 1A in April of 2023. Had robotic hysterectomy, with all the female parts remove, on May 17, 2023.
Had brachytherapy targeted to a tiny area on uterine cuff for 5 days in July.
I have a follow up appt. with my gynecology oncologist on September 28.
I had asked her if she was going to do a scan at my 3 month visit, and she told me no, it's not protocol.
And I am extremely nervous and fearful that this is how I may never be on her "Radar" as a patient that could have reoccurring cancer. When they staged me after surgery it was 1A 2B .
Have any of you had problems with you Oncology Dr. making decisions for you that you know doesn't sound right?

@miriam57, how are you doing 5 days post chemo?

Started chemo yesterday. They are saying it is treatable. I am getting taxol and carboplastin?? Once every three weeks. Will check to see if tumors are shrinking after a couple of rounds. If they are, we keep going if not, they suggesting Keytruda. Anyone been on Keytruda?

Thank you for the advice! Keep it coming. I just don’t know what the treatment will be. However, I am on the toilet a lot right now. It’s a little at a time. However many urges

Just remembered make sure you get a sitz cover for your toilet to sit on, I can’t remember what exactly I put in it but I sat on it and soaked my bottom when it was really bad. Another question to ask your doctor about.

At least I see people were offered treatment and you are to write about it. I will find out more Jan. 4 . So let’s all keep sharing!

I wanted to add the following but don’t want to alarm you as everyone is not the same. I had rectal bleeding after the radiation and it was very painful to have bowel movements. The doctors at Stanford gave me several creams none of which helped. I called my gastrointestinal doctor in desperation and he prescribed Nifedipine it actually worked it was like a miracle cream. Might be something you could ask your dr about?

This is helpful to hear from others who have had reoccurrence. It gives me hope. I am just wondering what the treatments are for reoccurrence in the pelvic area. Please keep posting how others are doing along the way!
Miriam in Florida. Leveraging Mayo in Jacksonville

Same here endometrial cancer in 2009, recurrence 2016. Radiation and brachytherapy. Mine didn't show on the pet scan either although I think they missed it from the next drs notes. Had I not gone to 4 gynecologist oncologists I would probably be dead by now, no one wanted to use a speculum which one of the drs finally did and saw that it had returned in my vaginal cuff. I was told at the time of my surgery that they got all the cancer so no radiation was necessary. All one can do is be proactive but it is tiring. Hope all goes well for you I know how scary this is.