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Question about endometrial carcinoma grade 1

Posts: 4
Joined: Jan 2011

I'm new here...I joined this network because my mom was recently diagnosed with endometrial carcinoma (grade 1); she had a full hysterectomy almost 2 weeks ago. When she came out of surgery the oncologist said the cancer was contained in the uterus (he said stage 1A), but after getting the results from pathology he said that he was in shock to hear the cancer was also present in her cervix (stroma?...) therefore she would need radiation. He said he didn't see any of that during surgery but after her uterus was frozen they could see these cells (how come her paps were always "normal" then?!?!...her last pap was only a couple of months ago! and she got diagnosed with endometrial cancer about one month ago after a D&C...) I'm curious how they know when the cancer spreads... right after surgery he said it was not bad at all only in the uterus (no lymph nodes involved or anything), then I hear the cervix had been affected (which was taken out during surgery too...)...how do they know when it had spread to other areas of the body? (she did have a colonoscopy and endoscopy not long before the hysterectomy and it was all normal thank God)...but can cancer like this spread to other areas even when it has not invaded the tissues of the uterus too much (it didn't even invade deeper layers of the uterus...only a short distance in the cervix...and it's grade 1)... her lymph nodes have not been studied because he said he didn't see anything when she had the hysterectomy....I wonder...how do they know when it invades other organs such as bladder, lungs, abdomen, etc? Is this possible even when it doesn't look too bad in the uterus?
thank you!

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

My endometrial cancer was originally suspected after an abnormal PAP test, although a PAP test is NOT for endometrial cancer and a clear PAP doesn't normally tell you anything about whether you might have endometrial cancer. But, the way it was explained to me, some endoemtrial cancers exfoliate (like your skin exfoliates) and with me, some of those microscopic endometrial cancer cells luckily floated down there just in time to be picked up by my PAP test. With your mother, that didn't happen. But the cancer she has in her cervix is probably not cervical cancer at all, but a metastisis of her endometrial cancer so may not have been recognizable to the person looking for cervical cancer.

I think MANY of the women here will tell you (myself included) that after surgery their family was reassured that the surgeon said it looked as if the cancer had not spread, only to find out after the pathology was examined that microscopic cells had shown up elsewhere, and that radiation or chemo was being recommended. Don't be too hard on your surgeon for that; be glad that the tumor was so tiny that it was not visible to the human eye; that's good! The radiation will probably knock that back to nothing pretty quickly. (((Poly)))

My worry for your mother is that she did not have lympph nodes removed for pathology to see if the cancer may be on the move more distantly. You may want to get a 2nd opinion to see if that should still be done. But for me, having that second surgery would depend on the GRADE of your mother's cancer. Please ask her oncologist what the GRADE of your mother's cancer is, as that tells you how likely it is to spread. If she has a Grade 3 cancer type, then you will most likely want to encourage her to have the radiation and maybe even some chemo. But if it is a Grade 1 cancer, she may be fine with just the radiation. That localized radiation isn't bad, you'll see. So sorry you have this worry to deal with. But it sounds like your mother's surgeon was making what seemed like a sound judgement about the extensiveness of her surgery and could noty really have known about the spread to the cervix at the time of the surgery. I don't think you need to stop trusting him.

RGK's picture
Posts: 20
Joined: Oct 2009

Hi Poly,
Am I reading correctly that your mother's cancer is Grade 1? If so, that's the least aggressive form (on a scale of 1-3). If that's the case, chances are likely that they'll recommend some radiation that will knock it out. I agree with Linda that you might want to ask for a second opinion from another gyn/oncologist on the desirability of another surgery to test your mother's lymph nodes. As for spread in other parts of the body, they usually use PET/CT or CT scans and biopsies.
Sending all best thoughts to you, and to your mom for a good recovery!

Posts: 126
Joined: Apr 2009

Poly, This is a common story that is a whammy and it does occur about 2 weeks out of surgery. Ask for a copy of the path report, ask if lymph nodes were sampled both pelvic and peri-aortic, look for depth of myometrial invasion. Did a gyne/onc do the surgery? Pap smears do not pick up endometrial/uterine cancer unless it is in lower into cervix-transvaginal ultrasounds are good but not routinly done unfortunately!!. I would gather my info and go to a second opinion at a large university with gyne onc surgeon and gyneonc pathologist. did your mom have robotic surgery or open? Uterine cancer is silent and does not get much publicity unfortunately for those of us touched by it. The good news is that surgery and other treatments do good. How old is your mom? also try to have you mom CT/Pet fusion overlay when she heals so as not to see a false positive-talk to her doctor. May be a study for NOPR for pet/ct fusion? Prayers for you both. bonnie

Posts: 4
Joined: Jan 2011

I am so glad I found this discussion board...so much support and understanding...so much knowledge and information; I'm very thankful to all the ladies that replie back (cause it is not easy to deal with this...it was so unexpected...)
The surgeon and doctor that is seeing my mom is a OBGYN/oncologist (I heard he has many yrs of experience...) I talked to his nurse today and she said that it is grade 1 (it was in the pathology report as well) and it didn't look too bad; no mass was formed and no deep penetration (the deepest penetration they found was 6mm in one area) and that is why they didn't perform a lymph node testing. They said that the cells in the cervix were so small that they were not visible to the eye...but they want to do radiation as a preventive measure, and they will do a PET scan before that (but they have to wait for my mom to recover from the total hysterectomy that took place on 1/12)...
My mom is 59 yrs old, in excellent health, and she is recovering very fast from the surgery (everybody at doctor's are amazed to see how well she is doing so fast...that makes me happy ;-)...)...she had the open surgery (vertical scar) because the uterus was a little stucked to the abdominal wall...
I will keep reading the posts in this website...so helpful! and again, thank you for all the support...

Kaleena's picture
Posts: 2064
Joined: Nov 2009

Hi Poly:

I am glad your mom is recovering fast. In 2005 I had a hystectomy due to endometriosis. I had my gyn and a gyn/onc assist (the assured me I didn't have cancer), it was that I was full of scarring from the endometriosis. I had a laparoscopy and a transvaginal sonogram prior to surgery. They completed the surgery and they said everything looked great, I recovered quickly, however, upon my check-up I was advised that my pathology came back that I had endo cancer. I had to go for a staging surgery thereafter wherein I was diagnosed with Grade 2 stage ii/iiia. It was found in my uteris and one ovary but not visible to the eye. The doctors told me everything looked fine but I ended up having cancer which shocked everyone. During the staging they found no more cancer. I had prevented treatment of chemo and then 3 bracytherapies. So you see they can't always tell.

Your mom sounds like she is very positive which really makes recovery good.

My best to you and your mom.


Ava 52
Posts: 7
Joined: Jan 2011

Hi Kathy I am new to this forum. I was diagnosed April 23 and had full hyst May 18 th. 4 rounds of chem and radial 24 and 3 brachy. What struck me was your dates you have been good for 7 years? I am at this strange place since I finished my treatments in October listening to people talk about the poison of chemo and the perils of radiatio. I have been looking for survivors that have got some time behind them and wondering how they are doing but I am having a hard time finding them. Today I met a lady who is 69 and had it when ahe was 35 she had to treatment beyond hysterectomy and they did not even take her ovaries.

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