Edited Title: New Uterine Serous Cancer Diagnosis Stage IV

They were never able to determine my original origin.   They ended up diagnosing it as Stage 3a, Grade 2 Mullerian endometrial adenocarcinoma.  It was in my uterus, cervix and left ovary,  However, they treated it as Ovarian Cancer.    I was 45 years old at the time.  That was almost 13 years ago!

I had a CT scan before my original surgery back in 2010, but no PET scan was done at that time (I've had some since).  I had cancer in my uterus, both ovaries, and on my small intestine at that time.  My GYN/onc. told me that during the surgery, he thought I had ovarian cancer, but he brought my case up to the tumor board of the hospital.  After much discussion, they decided it had started in the uterus and spread to the ovaries.  Weirdly, the tubes were cancer-free.  I'm not sure if a PET scan could have made the determination any easier, but I have my doubts.  I was diagnosed as stage IVb UPSC back then and I had a recurrence almost 7 years later last year where the same cancer was found on the outside of the ascending colon, in the peritoneum, and the paracolic gutter.  I guess it doesn't make all that much difference which kind it was since they're both so similar in behavior.

It sounds as if your surgeon has an excellent plan.  If you feel good about it, trust her/him and relax.  I've found this to be a journey that sometimes needs to be taken just one step at a time.

DM_K said:

I don't think it makes much difference either

Hi Pinky, it sounds like we have many things in common.  I spoke to my gyn-onc today.  She said she conferenced with 3 other board certified gyn-onc and reviewed my tests and she had some good news and some bad news.  The good news is that the cancer didn't spread to my brain or liver.  The bad news is that the tumors in my lymph nodes, that are located in the groin, are very large. She said these tumors may be too close to the large ligaments that control my legs, and to remove surgically may damage the tissue surrounding the ligaments, leading to "destruction" of my legs.  My peritoneum and omentum are also involved.  On my scheduled surgery day, my doctor said she would first make a small incision to see how close these tumors are to the ligaments for safe removal, before cutting a large incision for the major surgery. If the tumors are too close, she will close up the small incision and try chemo for a period of time in order to shrink those tumors before performing the big surgery.  She told me the endocervical biopsies showed uterine serous cancer and she believes I'm at Stage IV.  She also believes the uterus is the origin and responsible for the spread of cancer to my ovary (I only have one as the other was removed over 20 years ago for a benign ovarian mass caused by torsion) and not the other way around. I was hoping for a more definite surgery plan, but no matter how it goes, my main desire is to have quality of life versus quantity so this seems to be the best approach for me.

How are you doing now, after your reoccurance last year?

I apologize for not getting back to you sooner.  I missed reading your reply to me at the time you wrote it.  I'm doing okay now as far as the cancer goes.  My last CA-125 was 9.1.  I have to get tested again in a week and a half.  Sometimes I have a little abdominal pain from pushing a heavy grocery cart (I only go grocery shopping once every couple of weeks). I had surgery for an incisional hernia from my cancer surgery in 2012 and a repair to my abdominal wall from another hernia when I had my 2nd cancer surgery last year.  I sometimes feel like the hernia is back or I at least strained something in my abdomen.  I'm going to mention it to my GYN/onc. when I see him again in the middle of April.  It's not as bad as it was at first, so I hope I'm okay. 

My GYN/onc acted like he expected the cancer to come back in another 5 years or so, which means I have to be sure to get carefully checked out all the time.  I have both the GYN/onc in one hospital and an oncologist in another hospital (where I worked and had my chemo done).  I get checked  every 3 months by one or the other.  They alternate seeing me. My cancer grew back so fast the last time that I had to have surgery about 2 months after my last CA-125 test had came back in the normal range. It was luck that I'd had a hemoccult test done by my primary care provider's office and blood was found in one of the three specimens.  I was sent for a colonoscopy where the cancer was spotted growing on the outside of my colon (the camera inside the colon picked it up).   I hope you're making progress with your treatment    

ive heard several names for it, but it’s the aggressive one. I would give anything to have a Ca-125 that low!  I had an ovary the size of a tennis ball, uterus twice the normal thickness, and multiple lymph, spleen, and liver (arguable) involvement. My original CA-125 in April 2016 was nearly 3,000. Had 3 rounds of carbo-Taxol, then surgery and three more rounds.  Got down to 17 first year, 15, second, but then I had to move and start over with new docs in a new state.  Doc here said I had already had more platinum (the carbo part) than would kill many people so it’s off the table.  I foolishly thought I could just get 6 rounds of the chemo every year and stay alive that way.   It’s back of course, since it was never really gone. I’m beginning to think that nobody has survived this cancer, but I’m still hoping against hope I can find someone who has beat the odds and tell me what they did.  I’ll take the long odds, since I only had a .6% chance of it going to my brain, and it did, (changing grade from IIIC to IV.) maybe I can be in the 1-3% that survives 5 years.  I’m 2 1/2 years in now, CA-125 back up in the 300’s, getting an old chemo that doesn’t seem to be doing anything. Got brain Surgery the day I was to have started a clinical trial.  That bounced me off the list. Good luck. All I know is that the Keto Cancer diet definitely slowed the growth, even tho the docs don’t have any faith in it.  I had symptoms from the tumor for many months before the seizure, and have PROOF of that, but doc said I “couldn’t have had it that long because it grows so fast.” I am a blood type O which does very well on a Keto diet, but don’t presume it helps for everyone, (or anyone else for that matter.) After struggling with my health since forever I finally realized I’m a cave woman (3% Neanderthal!) and need to eat like a hunter gatherer.  I was at least able to weather the chemo much more easily than many.  In now a total of 14 rounds of strong chemotherapy I’ve only needed a nausea pill twice. The naps the second week were needed but that’s okay. Good luck in your treatment. 

ktp2131 said:

Serous adenocarcinoma

ive heard several names for it, but it’s the aggressive one. I would give anything to have a Ca-125 that low!  I had an ovary the size of a tennis ball, uterus twice the normal thickness, and multiple lymph, spleen, and liver (arguable) involvement. My original CA-125 in April 2016 was nearly 3,000. Had 3 rounds of carbo-Taxol, then surgery and three more rounds.  Got down to 17 first year, 15, second, but then I had to move and start over with new docs in a new state.  Doc here said I had already had more platinum (the carbo part) than would kill many people so it’s off the table.  I foolishly thought I could just get 6 rounds of the chemo every year and stay alive that way.   It’s back of course, since it was never really gone. I’m beginning to think that nobody has survived this cancer, but I’m still hoping against hope I can find someone who has beat the odds and tell me what they did.  I’ll take the long odds, since I only had a .6% chance of it going to my brain, and it did, (changing grade from IIIC to IV.) maybe I can be in the 1-3% that survives 5 years.  I’m 2 1/2 years in now, CA-125 back up in the 300’s, getting an old chemo that doesn’t seem to be doing anything. Got brain Surgery the day I was to have started a clinical trial.  That bounced me off the list. Good luck. All I know is that the Keto Cancer diet definitely slowed the growth, even tho the docs don’t have any faith in it.  I had symptoms from the tumor for many months before the seizure, and have PROOF of that, but doc said I “couldn’t have had it that long because it grows so fast.” I am a blood type O which does very well on a Keto diet, but don’t presume it helps for everyone, (or anyone else for that matter.) After struggling with my health since forever I finally realized I’m a cave woman (3% Neanderthal!) and need to eat like a hunter gatherer.  I was at least able to weather the chemo much more easily than many.  In now a total of 14 rounds of strong chemotherapy I’ve only needed a nausea pill twice. The naps the second week were needed but that’s okay. Good luck in your treatment. 

ktp, wow.  You have been through a lot.  Thank you for joining us and posting.  Please let us know how you are doing.  You, and all the warriors, are always in my prayers.