Endometrial cancer: Questions about post-surgery checkups

I had a total hysterectomy almost a year ago when I was diagnosed with endometrial cancer. The surgeons said they are as certain as they can be that they removed all the cancer, because it was at stage 1.

Since the surgery, I have had pap-smears and pelvic exams every 3 months. So far, they say, I'm clean. I'm about ready to go for my one-year exam.

My question is this: How can a pelvic exam and a pap smear locate a reoccurance? I've heard that this kind of cancer can reoccur just about anywhere. The pap smear will only tell if there is cancer in the vaginal cuff or the cervix.

Am I getting the care that I should be getting to make sure the cancer doesn't reappear?

Thanks a million for your support a year ago. I think answers to this question might put others at ease, too.

Chicago1

Dear Chicago,

The most common spot for EC (endometrial cancer) recurrence is the vaginal cuff, and that is why you get the pelvic exams. Most recurrences are discovered through visual examination and not by pap, btw. As for recurrences in other locations, you are absolutely right that a vaginal exams are not going to do anything for that. Some gyn/oncs do routine cat scans (once a year or so) but others only order imaging tests if you are presenting certain symptoms, such as unexplained pelvic pain.

In my case I WAS having pelvic pain, my gyn/onc ordered a cat scan, and a malignant lymph node was discovered. Now that I've been treated for metastatic EC, I get pet scans every 3 months.

You may wish to ask your doctor if he ever orders cat scans for EC follow-up and say that you would like one if that is not the doctor's regular routine. It is your care, after all, and you pay for it, so you should get what you think is appropriate.

Hey Chicago,

My doc orders a CT scan & a chest x-ray prior to every other appointment. My next appointment is in September and I'll be having my 3rd post-op scan & x-ray.

Some gyn/oncs do not take stage 1 ec very seriously, you think?

Hugs,
Pearl

For the first three years I had a pap, physical exam and check-up every three months (including feeling for lymph nodes in groin, abdomen, neck, armpits). Every six months I had a pelvic scan. I am now getting paps at six month intervals and the next scan will be an annual one.

As Genie said, endo ca is most likely to recur in the vaginal cuff, but you should be aware of any changes/pain etc and if you have any concerns follow up w/your Dr.

Jan

Hey Pearl, I DO think they tend to slough off stage one EC a lot more readily than they should. Personally, I think the follow up protocols are kind of lame. If I hadn't complained of pelvic pain (which turned out to be unrelated to the cancer), I wouldn't have had the scan that revealed my stage IC was actually IIIC.

One of my friends told me that her oncologist and breast surgeon told her that EC is "nothing," and she did me the favor of passing that bit of news on to me twice. This was while I was recovering from hysterectomy and was between two major surgeries.

Yes, I do wish they would pay more attention.

Thanks for your response. I have about a week until my one-year anniversary appointment, and I want to be as informed as I am when I go to see the Dr.

More questions for anyone out there: Have you had any experiences with reoccurrence of endometrial cancer? Where did it reappear? How was it discovered? What was the treatment?

Thanks, sisters. I guess all cancer survivors are nervous about this to one extent or another. The one-year anniversary is probably what kicked it off in my mind. You have been very helpful to me.

Chicago1

	Quote:
Have you had any experiences with reoccurrence of endometrial cancer? Where did it reappear? How was it discovered? What was the treatment?

Mine was either:
• undiscovered at the time of surgery because they only sampled lower nodes and not the para-aortic nodes during surgery
• or a spread to nodes just outside the field of radiation...

I felt well and expected to breeze through my 1 year and 3 month checkup; but a CA-125 that had quadrupled in six months indicated there might be a problem. Keep in mind, the CA-125 test only picks up endometrial recurrence in about 10% of women so a lot of doctors don't include it as part of check-ups.

Since the CA-125 is just an indicator and not always reliable, I had another CT scan (had one at year check up at a different facility) and eventually a CT guided lymph node biospy.

Treatment: chemo. I decided if I had to do chemo I might as well make it count toward possibly helping other women down the road since there are so few women with stage 3, 4 or recurrent uterine cancer that is is hard to fill clinical trials; so I enrolled in the GOG 0209.

Chances are you have nothing to worry about. I was a stage 3c and a grade 3 (both high risk for recurrence factors) whereas you're a stage 1.

Check-up time always brings out cancerhead. Focus on other things and try not to worry about the check-up.

Hi Sistas,
I am confused, I was told I had 2nd stage endometrial cancer and that's why they rushed my hysterectomy after my abilation. I had my surgery in Oct 2006 and have had 3 visits with my oncologist, however, they said I am fine. How can that be if people having 1st stage EC should have cat scans. I am a little weirded out by this. I had an endometrial byopsy 2 years prior to them finding the cancer, however, the doctor never told me that they found something he just said I need to do another byopsy in 6 months I said no. Never again, I changed doctors and after she saw the docs of my first biopsy she wanted to do another so I changed again, I was bleeding for 18 months by this time and my blood count was 6.2 and dropping. Finaly, I saw a Gyn that specializes in Endometrosis, and he did the laser abilation and thats when he found the cancer under the endometrial tissue. but that was before they lasered me. After that they told me it was 2nd stage cancer. Please explain this to me. Thanks

You may find some helpful info farther down on this page: http://www.cancer.org/docroot/cri/co...eatment_11.asp

and another link regarding treatment by staging:
http://www.cancer.org/docroot/CRI/co....asp?sitearea=

I am almost 2 years post-op from Endometrial cancer Grade 1 - Stage 1A.

I have seen my gyno every six months with a pap one time a year since surgery. He tests for CA-125 everytime with no problems.

I had a ct-scan at diagnosis and six months after that for 1 small nodule found on my lungs. It did not change in size so I am thinking that I had this nodule was there way before I was diagnosed. My father has the same nodules so I am thinking that they may be hereditary.

Good luck!