Is timing between diagnosis and hysterectomy critical?

@jneil Welcome to Mayo Clinic Connect. Of course you are stressed. I tried to act "zen" at work but inside I did not feel that way at all. You had a biopsy and heard the word "cancer". When I saw my doctor after diagnosis I got lost on my way home on a familiar route. I suddenly realized I was in a neighborhood I'd never been in before. I was just too stunned, stressed, and shocked to navigate. I live in a small enough area that it wasn't too difficult to get myself back on a familiar route but it certainly was a wake-up call about how I was feeling at the time.

I am a volunteer mentor and not a medical professional. I was diagnosed with endometrioid adenocarcinoma FIGO Grade 1 in 2019. Stages are diagnosed after surgery so perhaps the 1 you refer to is FIGO Grade 1?

I was told by my gyn-oncologist that endometroid adenocarcinoma is the most common of the uterine cancers and is not generally aggressive. Now, that doesn't mean that anyone should wait too long before their next consult. Your next consultation is a few weeks away - can you call the office of the medical provider, tell the scheduler who answers the phone what your diagnosis is and ask if there are any earlier appointments? You can also ask to be a "wait list" in case of cancellations.

Here is some reading that will explain your diagnosis and FIGO Grades. When I have a medical appointment I write my questions down on paper and take those with me. I also have someone with me during my appointments which is usually my husband. We both take notes and with his "set of ears" during an appointment in which I feel very anxious he will hear what I did not thoroughly process.

Mayo Clinic Endometrial Cancer:

-- https://www.mayoclinic.org/diseases-conditions/endometrial-cancer/symptoms-causes/syc-20352461

American Cancer Society-Endometrial Cancer Staging:

-- https://www.cancer.org/cancer/types/endometrial-cancer/detection-diagnosis-staging/staging.html

Thank you, so much - very grateful. I believe half the 'anx' is the waiting and wondering and certainly anticipating the unfamiliar, unknown, and disbelief. It will be really nice to sit down with the Doctor and have more clarity and direction.

@val64 @jneil @naturegirl5
The waiting is SO hard, and there are so many ups and down. For me, that is the hardest part. I had some post-menopausal bleeding, starting in August. An ultrasound diagnosed was endometrial hyperplasia/endometrial carcinoma. I was terrified. I saw a gynecologist, who disagreed with the diagnosis because none of the traditional criteria fit me (polycystic ovary syndrome, infertility, obesity, etc.). He was convinced it was a polyp. I had a D&C and hysteroscopy in December, and even after the surgery, he was convinced it was a polyp or fibroid that he sampled. A week later, I was diagnosed with grade 3 endometrial adenocarcinoma. Within 2 weeks I had an appointment with a specialist, and within 2 weeks of that a total hysterectomy with fallopian tubes and ovaries removed, as well as lymph node sampling. My 6 week follow is next week, and I am so unsettled about the results. I have seen the results ahead of time, and there are good parts and not as good parts (only 11% spread into myometrial wall, clean margins, not in lymph nodes, but substantial lymphovascular invasion). DNA testing came back showing 3 mutations, including one POLE, with a high tumor mutation burden. I shouldn't be trying to figure this out myself, but 6 weeks is so long to wait and worry. I am so stressed about what follow-up treatment will be, if anything, because I keep reading contradictory things. I can't wait to just to know once and for all. And to stop waiting. But I will also say that before the grade 3 diagnosis, I was told that grade 1 is VERY treatable and so slow moving that a little bit of a wait time will not impact it all. It is almost always curable!

Incredibly frustrating. I had some of the same experiences with a gyn-oncologist, who really should have known better.

(The ultrasound report said "suspicious for endometrial carcinoma", which is the strongest statement a radiologist is ever going to make. The gyn-oncologist then said he didn't think I had cancer, and that if I did it wasn't a big deal--WRONG, and an incredibly stupid thing to say. He also made a comment about my build (thin). After his attempt at a biopsy failed, it took him a month to schedule a D&C, and I don't know whether this was in part because he didn't think I was fat enough to have endometrial cancer. I could complain endlessly about this guy, but will stop there. )

Obviously, for you, it took them way too long to get from the ultrasound to the hysterectomy, but I think you should still be very hopeful. Women with POLE mutant cancers really do have an excellent prognosis, and did even before immunotherapy. So the odds are good that things will go well no matter what follow-up they/you decide on. But having things unsettled is definitely stressful. I hope you'll share with us what the decision is. Canada/Alberta seems to be ahead of the US regarding POLE.

Is the Dr who you have an appointment with on Mar 13 someone you've seen before? or someone you think is better than the other options? If not, you may be able to find someone equivalent at a different hospital who could see you sooner and get this process moving.

@dlgbb @val64. Wow, our stories are so similar to one another. My gynecologist who I originally consulted when I had post-menopausal spotting also did not think I had the risk factors for endometrial cancer. I had an ultrasound that indicated “suspicious for endometrial carcinoma” and then a D&C and hysteroscopy was scheduled by the gynecologist. My gynecologist said he was stunned by my diagnosis of endometroid adenocarcinoma FIGO Grade 1. Wrong. I did have some of the risk factors but I guess I was too think, also. Fortunately, once the diagnosis was made I got into Mayo Clinic quickly and the gyn-oncologist I saw scheduled me for a hysterectomy within a week. So, from diagnosis to hysterectomy was just two weeks. I agree with you, @dlgbb. Your wait is too long. Will you call the office and see if you can get in sooner?

@naturegirl5 @val64
Good morning, I won’t try to get in any earlier at this point, as my appointment is next Thursday. After surgery, it took 2 weeks for surgical pathology to come back, which recommended the DNA testing, and then another 2 weeks for those results to come back. I guess that is why the results are not given until the 6 week surgical follow up. My concern, though, is if 3 of us were told we couldn’t have endometrial cancer because we didn’t meet criteria (I am thin as well, have 3 children), why isn’t there more awareness of the atypical cases? This is very concerning for patients who are losing precious time because of an assumption.

for me, the wait has been the hardest part. this is my timeline.

I'm 61 years old.

abnormal bleeding mid November 2024 - it was 2 weeks before the gyno could see me (November 26th, 2024). I was immediately sent to the ER and admitted to the hospital for a blood transfusion because i was severely anemic. I was released from the hospital 3 days later without a diagnosis.

gyno does uterine biopsy and pap smear - this was done on December 11th, 2024. I received the results December 16th, 2024. major delay due to the holidays and patients trying to get in because the new year and having to start a new copay cycle.

CT Scan - was done on January 2nd, 2025 and the results were received on January 7th, 2025

Meeting Surgeon - January 14th, 2025. I was lucky because my surgeon is considered the best in my area and the cancer institute is always rated number one. i felt no need for a second opinion given these facts.

Radical Hysterectomy - I had my surgery on January 29th, 2025. my uterus was so big that i had to have my vaginal opening cut so the surgeon could "birth" the uterus out.

Pathology Results of Uterus - Endometrial Adenocarcinoma FIGO Grade 1. My tubes, ovaries, lymph nodes, and pelvic wash all came back negative. The myometrial invasion was 57%. The cancer center recommends radiation when myometrial invasion is above 50%. My immunohistochemistry of neoplastic cells show p53 wild type (this is considered favorable).

I will be having Brachytherapy (internal radiation) but I have to wait until I'm healed from the surgery because a wand is inserted into the vaginal to delivery the radiation.

So it took about 11 Weeks to go from vaginal bleeding to radical hysterectomy. I don't think my FIGO rating and 57% infiltration would have been different - even a few weeks, I believe I'd be over 50% and would need radiation.

That time frame seems to be about the average. You can request to be notified of a cancelation. I was able to get my surgery sooner because someone else contracted covid.

It took 6 weeks to get into the GYN. That was a bigger issue for me than waiting for the surgery. Its scary that our healthcare system is so over worked and under staffed.

between now and the surgery you have time to prepare. Hopefully you will be eligible for a laparoscopic surgery. the GYN wanted to do my surgery, but i waited for a surgical oncologist. The person who does the surgery is important. You want someone who sees gynecological cancers all the time, not just a GYN. March 10 is just around the corner.

Denise