Relapse endometrial cancer

Isn’t it sad though that I had to go to 4 doctors before I found one who would use a speculum. Isn’t it stressful enough going for an appointment without having to ask for the doctor to use a speculum?

@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?

I'm sorry to a hear your cancer is recurring but do not lose hope. My cancer started very similar to yours. Unfortunately the laparoscopic removal of the uterus often seems to leave a few cancer cells behind. I found a large lump in my right abdomen. When it came back, my doctors ignored it so I ended up at Mayo, thank goodness. My cancer then spread to lymph nodes in my right groin. Radiation got it all. It then spread to my right lung and once again immunotherapy and radiation took care of it. Yes I do have some residuals from my treatment but I am now cancer free for three years and have a rich and full life with family and friends. Be patient and enjoy the little things. All of a sudden you will realize you are healing in body, mind, and spirit.

I'm also new to this site and trying to figure out the best thing for my care. I have been told way too many times that my case is "unique". which makes it very hard to find anyone that has a similar experience.

Thankyou for such good advice!
I will have my first follow up september 28. I may just have to be a little naughty to get them to at least do a CT scan!
Wish me luck!!!

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 Karenlj!
Thankyou for your reply.
I am so sorry that your cancer reoccurred after 3 years!
Being an oncologist, your Dr. should know that the recurrence is always in the back or our minds, and they KNOW that it is TOTALLY a possibility.
And... listening to their patients; to YOU, is the way they find out if you are doing well, and if you have a complaint like " I know somethings wrong, I don't feel well, I think my cancer has come back, and I need some tests to diagnose the cancer, or to tell me that all is ok.
How hard is that?
I am already mad. Did you feel like when you went to her for your treatment, that she was compassionate, and she listened to you?
I am an RN, BSN, and (retired),, I get really steamed when our voices aren't heard and our bodies are not treated.
God bless you on your journey going forward! How are you feeling? Do you live close to the Mayo Clinic?
I feel right now, it's one day a a time. I hope we all continue to stay healthy and remain cancer free for the rest of our wonderful lives!!

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?