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high grade serous endometrial cancer
lynndi
2 Posts

New Post- I am now 6 months post chemo and radiation (after a radical hysterectomy in Nov 2020). My oncologist told me that other than 3 month, then 6 month, then yearly vaginal exams, there is no point to do CT or other body scanning to monitor for recurrent cancer. For anyone with endometrial cancer, is this your understanding from your specialists?

12 Replies
Boby1511
786 Posts

@lynndi

Hi there,

I have uterine adenosarcoma with sarcomatous overgrowth.

I think it depends on the cancer what the level of concern for recurrence is.

I am currently getting a CT every 3 months, was diagnosed in 2020 and finished surgery/chemo/radiation Feb 2021. I am still doing the every 3 months, but my docs are thinking of maybe switching me to every 6 months if my next 2 scans are stable. Just had a scan this week and we will make the decision after the next scan in 3 months.

Think they want to keep your radiation exposure to a min along with the work to a min.

But if you have issues you can always talk to your doc and discuss an additional scan. I know I have had a few in between my 3 month periods. But it is change they are looking for. So sometimes you may not notice anything if your scans are too close to one another, especially if you cancer is slow growing.

Sending you best wishes.

lynndi
2 Posts

Thank you Boby1511. The oncologist said he was not keen on the extra radiation and believes the physical exams would b e adequate even though the ca is a rare and most aggressive type. I sure won't miss any physical exams, that's for certain. :) and yes for sure, I wish for you the best going forward and only negative results!

Jlo
193 Posts

LYNNDI:

Hi, yes that's correct. I had Stage 4 serous endometrial cancer and I get checked every 6 months for 5 years by my gp. I did go for an MRI after one check up as I had a high liver count, but it was not cancerous. If your oncologist or Dr. Sees anything concerning in your bloodwork, he/she will send you for additional tests. I hope not. After 5 years, I was told I would be then checked every 3 years, but that could changed again. The chance of re-occurence is low after 5 years.

Best Joan

Cynthia Mac
3575 Posts
lynndi‍ , I had a long bout of HPV when I was in my 20s, and like you, I was skeptical when my doctor said I only needed a physical every three years.

Like you, I never missed another opportunity for an exam. (I’d had so many by that point, they were literally just another day at the office!)

Jlo‍ Mentioned bloodwork, and that’s certainly something you could ask your specialist of GP about. This is one of the benefits that’s come out of research: that a number of indicators have been found to help with early detection!
Cajonat
18 Posts

Hi @lynndi I was just diagnosed in Nov 2021 and just started chemo this week. My oncologist did mention that regular CT scans for follow up would not be needed in my case, only if they happened to be looking for something else unrelated to this cancer. Congratulations for being 6 months out!

Helentess
28 Posts

Yes that is what they do here. Just phone or physical exams every 3 months for a year, then 6 months for 2 years, then annually, unless an issue pops up. NO CT scan unless there is pain or symptoms of recurrence. Doctors monitor your blood tests. I think it depends on your type of cancer & stage whether some people get CT scans.

You are never free from recurrence as 1 friend had her cancer come back after 6 years of being cancer free. And another friend had a different cancer occur after 10 years. Fortunately both were caught early through annual monitoring.

Take care.

Jan5
2 Posts

@lynndi I just saw your post and wanted to reply. I was diagnosed with stage 1-A uterine serous carcinoma in March 2020. I had a total hysterectomy and was advised to have chemo. Because it was not clear in the literature that an early stage cancer would benefit from chemo and radiation (percentages only slightly better) I opted for observation. I was 74 at the time and that played into my decision. I weighed the side affects of chemo against chances of recurrence. I live in Virginia so our health care can be different. I wish we had universal healthcare. Fortunately, my husband and I have good insurance.

My surgical oncologist sees me every 4 months. At two years, coming up, she will follow me every 6 months and yearly after 5 years. Fingers crossed. I did request a CT scan last summer as I wanted to travel without worry. She agreed and it was clear. Generally no scans, etc., unless there are worrisome symptoms, which seems to be what they recommend in Canada. She did do a CEA blood test on my second visit and it was a 7, down from 12 following my surgery. I didn’t have the test before my surgery. The diagnosis was a surprise. i wish you well. It is a scary diagnosis but you will be followed closely. I try not to think about a recurrence but once You have cancer, it is always a possibility. I try to live a healthy lifestyle and that is all I can do.

My cancer is called uterine MMMT or carcinosarcoma. It is classed rare and agressive. I was stage 1b but it is a grade 3 cancer. I had a radical hysterectomy followed by 6 chemo (carbo/taxol) and 25 treatments of external pelvic radiation. Treatments finished late August 2020. I have had a CT scan every 6 months as well as two MRI's to be able to check something that may have been concerning. I just had a CT scan on Dec. 29th and it was NED. Next scan will be in June. I live in Canada and so far I am very happy with our health care system!

Aris
2 Posts
Hi I live in Toronto and I was diagnosed with the same uterine cancer August 2021
i had a full hysterectomy in September followed by chemotherapy. I still have 2 more sessions then I will finish with radiation.
the cancer had spread to my groin lymph nodes I’m very strong but I have my weak moments.
I had my CT scan a few days ago and am getting nervous. I have faith and try to be as strong as I possibly can be. Hope all is well with you.
lola1969
2 Posts

i also have endometrial Cancer. 1B2,/grade 2. i have had multiple Brachytherapy radiation appointments so far but no Chemo. Which i suppose means iM lucky? I don’t know what to think or believe because i have so many DR’s i feel seen giving me mixed messages,,?!? In very sorry to know you.. because of this sick d*** thjng we have now in common. Take care and best wishes.🙏

Is your cancer MMMT (carcinosarcoma) which is classed as rare and aggressive?

@northern girl

I'm so glad you are connecting here.

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