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New diagnosis trying to cope

hestkp
Posts: 2
Joined: Mar 2012

Hello everyone,

I'm glad to see that there is a network set up for people to discuss what they are going through. I am newly diagnosed with endometrial cancer - the adenoidcarcinoma type. I am 37 years old and was diagnosed following a routine visit to my Gyn because I couldn't get pregnant after 2 years of trying. I really didn't think anything was wrong because it took my husband and I 3 years to get pregnant with my now 4 yr old son. An HSG done Dec 05 revealed possible polyps on the right side of my uterus, a D & C with polypectomy was done Jan 18 and pathology reports came back Jan 25 positve for grade 1 endometrial adenoidcarcinoma. I was in complete shock and disbelief because I didn't have one symptom and am completely healthy! I just had a robotic total vaginal hysterectomy on Feb 27 with removal of tubes and ovaries. I had no lymph nodes removed because the my Gyne Onc believed that the cancer was confined to my uterus. Now, I get a phone call yesterday saying that my final pathology report will not be completed until an expert Onc/Pathologist in Baltimore reviews them because there may be cancer cells along right side of my endocervix and now they are trying to determine if this is uterine cancer that has spead downward or cervical cancer that has spread upward because the adjunct treatment is different (there is adenoidcarcinoma of the cervix but is not the most commen type of cervical cancer). The Gyn Onc said that adenoidcarcinoma of the cervix is not always picked up on PAP smears because it not surface like squamous cell but is glandular and is only picked up if growing through the cervix to the top layer. My concern is should they now remove my lymph nodes and omentum from uterine cervical area?? How can you properly stage if no lymph nodes have been dissected. I'm confused...If anyone can please help me understand this I would greatly appreciate it.

Hestkp

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

So sorry you are dealing with all this. The waiting and uncertainty is so hard. I think it is good that you have gyn-onc and onc-pathologist involved. Hopefully they will be able to answer your questions about staging and needed treatment. One thing that we are all learning is that even when things seem so clear and cut and dry there can always be "curves" that are thrown. Even the thread titled "sobering news" explains that there are variants within a tumor.

There are so many of us that had no risk factors and were healthy and still have a serious cancer diagnosis. My doctor told me it was "bad luck". Small consolation.

I can't answer your questions about staging but I will offer a ((((HUG))))and lots of prayers that you have no cancer left behind and that you fare well with your treatment decisions. Waiting and not knowing can be so hard. I hope that you can remain optimistic through this time. ...And Don't hesitate to get a second opinion if you want one. It is not uncommon to request this.

All the best to you, Mary Ann

Luvkitty
Posts: 6
Joined: Jan 2012

I am all for getting a second opinion. It may take a little extra time, but you will have more knowledge to make your decisions of which way to go.
I just received a second opinion on a surgical procedure that my original oncologist thought could not be done. It has opened up several new options for me to explore.

pakb56
Posts: 141
Joined: Jan 2012

but, there are a lot of great women and loads of wonderful information available.

We all have some form of uterine/endometrial cancer and our treatments are alike in so many ways and different in so many as well. That's the thing with this darn disease, constantly keeps you guessing.

Your question about the lymph nodes is so difficult to respond to. I am sure most of us have an opinion one way or another, but us telling you we think you should do this or that undermines the relationship with your gyn/onc. I know the waiting is hard, but once your doctor has all of the pathology, a course of treatment can be determined.

I had post-menopausal bleeding and, after two negative biopsies, my gyn did the surgery to removed my uterus, tubes and ovaries. Finding out at my post op check I have cancer was quite a shock. I was referred to my gyn oncologist.

I had a tumor about the size of my uterus 90% through the uterine wall with right fallopian tube involvement.

Because I already had surgery to remove all of that, it was possible I would need a lymph node dissection. However, prior to doing so, I had a CT Scan to see if there was any spread of the cancer. If additional tumors were present the cancer had spread and the lymph node dissection would not be done.

The CT Scan came back clear and I have the dissection. If the lymph nodes were all negative my treatment would be radiation only. If positive, chemo/radiation/chemo. Of the 21 lymph nodes removed, one was positive with a microscopic cancer cell.

My first reaction was that darn one cell...if not for that I would not have had to have chemo. However, as I thought about it, I wondered what would happen if the 21 cells were negative, what if the cancer cell was in the 22nd lymph node?

I have stage 3c endometrial clear cell adenocarcinoma.

The whole adventure is like building a flow chart and each event dictates what your next path is.

The waiting may not be the worse part but it is agonizing.

Wishing you the best.

Pat

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I did not have lymph nodes removed because they initially thought that I had a different type of cancer (that apparently doesn't spread to the lymph nodes)and once the pathology report came back confirming a rare uterine cancer, my onc-surgeon declined to do a second surgery because the treatment would have been the same either way. So you are correct, its hard to stage without sampling lymph nodes. Right now I am diagnosed as Stage 2 because there was invasion into the cervix, and if there was lymph node involvement then I would be Stage 3, but as I said, treatment was the same either way.

Did you have any scans CT or PET? Sometimes that can show lymph node enlargement which might convince them to go in a take specific lymph nodes.

I would definitely ask about the pros and cons of going in and taking lymph nodes, and if you aren't comfortable with their recommendations, you can always get a second opinion.

Take care,
Cindy

ccfighter
Posts: 390
Joined: Jan 2012

Hi he stop,

If the path comes back as cervical origin, then you would be at least a stage 2. And it is true that surgical staging is more accurate than radiology staging, but radiology is often the only staging used. Per/ct can pick up lymph node involvement with really good accuracy. Some oncs believe that lymph node dissection is also therapeutic while others do not. I was diagnosed with cervical adenocarcinoma, stage 2a but grade 3. My onc sampled my nodes, but 2 were shown to be positive by pet/ct, and so she did not do a full stripping because of the lymph edema I would surely have after radiation. Omentum is not removed for cervical cancer.

pakb56
Posts: 141
Joined: Jan 2012

CC...Can you elaborate on why some docs think the lymph node dissection in theraputic?

Pat

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