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Relapse endometrial cancer

Gynecologic Cancers | Last Active: Oct 5, 2023 | Replies (36)

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@bsn69

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?

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Replies to "Hi, I am new to this site, and am learning so much! I had Endometrioid Adenocarcinoma..."

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.

Yes! Especially when you get to the 5 year mark. I just keep pushing for my tests, I have a medical oncologist who feels CT’s are no longer needed after 5 years not happy with that since I have had 3 cancers. I talked to my gynecologist oncologist and explained my concern especially after they missed the cancer on the first pet scan, and I went to 4 gynecologist oncologist before I found one who would use a speculum had I not been proactive I would probably not be here to write this, due to this I have issues with trust in doctors I explained this and the fact that I would hate to find out later I had cancer that was missed so I asked for a pet scan which was ordered for me. It’s naughty really but try saying you have stomach pain, cramps etc I find that works. We only have one life so do what you have to to protect it.