Relapse endometrial cancer

Thank you for posting. I just found out that my endometrial cancer has returned. I had stage 1A in May of this year 2020, radical hysterectomy. It didn’t show up in a scan I July or a PET a an in July. It just showed up in a scan last week, it is I my groin lymph node, 2 in my pelvis and 3 smaller masses in my pelvis. Meet the dr. In Jan.
Please post what is going on, I was hoping to find others who are going through the same thing.
Miriam

Hi Sweetie - 13 yrs ago I had squamous cell carcinoma of the anal canal and had radiation for 1 hour every day over all the lower half of my body for 3 months and a chemo port for 244/7 chemo, also for the same time. Now the squamous cell carcinoma showed up in my uterus, then they said it went to the endrometrium lining, now it's cervical cancer. Going to have a radical hysterectomy and just get rid of all of it! It is an emotional roller coaster but you are in good hands and it sounds like it's in the beginning stages and they will just sap it out of there. Blessings to you sweetie, Gina

Hi Colleen. Yes, I was flabbergasted. I was just over 2 years out and believed I would never have to deal with the prospect of a gynecological cancer again.I started spotting and called my surgeon immediately who did a biopsy. Biopsy positive for stage 1A grade 1: MRI showed nothing, but radiation oncologist wanted to be sure there was nothing else so ordered the PET which came back clean. Radiation starts tomorrow. 25 external beam and then a week break then 5 brachytherapy. Daily visits to the hospital during Covid concern me, of course, but I am taking every precaution plus. Been a bit of an emotional roller coaster but I am feeling relieved since PET results. I think hearing from others who have experienced this would be a very positive thing. Thanks so much for your quick reply.

@jeanadair123 The use of a speculum in our follow-up cancer surveillance appointments has come up in other Discussions in our support group. I had my most recent cancer surveillance appointment the first week in September. I get my speciality care at Mayo Clinic in Rochester. I asked my nurse practitioner this question. Does she use a speculum with all of her patients and she said “yes”. This is the standard protocol. So every time I’ve returned for these appointments I have a pelvic exam that includes a speculum to have a look inside the vagina and at the vaginal cuff. In fact, this is how my recurrence of endometrial cancer was found in 2021.

I was initially concerned that CT scans were not part of my exams after I was first diagnosed with endometrial cancer in 2019 and had a hysterectomy. However, CT scans are now included in my exams following my recurrence in 2021. In my opinion, there is nothing that can replace the “hands on” exam.

So, let’s keep advocating for ourselves. We know our bodies best, right?

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.

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.

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?

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.