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Edited Title: New Uterine Serous Cancer Diagnosis Stage IV

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

Hi Everyone,

I just wanted to say that I pray that I find as much hope as you all have here.  A few weeks ago my pap smear showed epithelial cell abnormality and atypical glandular cells. My US showed a large ovarian mass and possible uterine polyp. My CT showed a large ovarian mass and an uterine polyp with metastatic disease of my omentum and lymph nodes with possible liver involvement. My CA 125 was 154. I had endocervical biopsies taken a week and half ago, a PET scan done 3 days ago, and a MRI of my brain done 2 days ago. After my PET scan my GYN-ONC scheduled surgery with chemo for March 27, and I was told all test results, including the biopsies, were still pending. When I met with my GYN-ONC for the first time a week and half ago, she said we were looking at stage 3 or 4 ovarian or uterine cancer, and that the PET scan will help determine ovarian versus uterine cancer.

I think cervical cancer is ruled out as my gyn-onc explained that if my cancer is cervical the treatment would be chemo before surgery, which is the reverse for uterine or ovarian cancer.

I'm 52 years old.

Any advice or shared experiences will be greatly appreciated.

Dawn

Kaleena's picture
Kaleena
Posts: 1960
Joined: Nov 2009

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!

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

Kaleena that's fantastic!  Thank you for your encouraging words.  I know it's going to be a long road just to recover from surgery then chemo, any advice for keeping sane during the process?  What do you think helped you the most to heal?

Northwoodsgirl
Posts: 527
Joined: Oct 2009

Hi Dawn! Welcome to the forum. Gosh there is so much to think about and ask. Awhile back the forum has a long string of messages suggesting what one should know or ask when newly diagnosed. Try to find that string. The post started in Feb 2018 I think. You will feel more control once you know the cancer type, stage and grade and treatment plan. Be prepared to have a rollercoaster of emotions-from fear to sadness to anger to depression to acceptance and a new found view of your life and what is most important to you. In between the tears there will be smiles and laughter to. Fighting cancer is something most of us never expected to have to do in our lives but...we do fight and go on to live our lives one day at a time for the rest of the life we have. Just know that many of us are keeping you in our prayers and are here for you as you navigate your chemo, surgery and possible radiation. ((Hug))

Lori

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

Thank you Lori for your kind words.  Good advice to take one day at a time and you're right about the rollar coaster of emotions.  At first I was sad but now I want to get my things organized just in case...then my family won't have to worry about it.  Lately I have been feeling indifferent, but like you said once I get all the information and know more of the treatment plan I will have something to go on.  I will look for the thread you suggested, thank you :)

pinky104
Posts: 574
Joined: Feb 2013

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.

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

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?

pinky104
Posts: 574
Joined: Feb 2013

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    

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

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's picture
DM_K
Posts: 50
Joined: Mar 2018

That's what I was thinking too, just one step at a time.  I know my options are limited considering how advanced my cancer is so I have to put it all into God's hands, and trust my doctor.  The only complaint I have is this feeling of constant irritability, hopefully once things getting rolling it will pass.

MrsBerry
Posts: 102
Joined: Dec 2017

I am wishing you strength for the road ahead, and for good docs to lead the way. You are in my thoughts and prayers. You will find much hope and wisdom here, as well as kindness and humor. (((Hugs)))

ktp2131's picture
ktp2131
Posts: 1
Joined: Aug 2018

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. 

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

We have women here who have survived! Don't give up hope.  I also had (or still have) UPSC. Yes, its aggressive but it seems like every week something new is coming out to treat it. Start your own thread - just copy this and paste it so other women here can see it. Please let us know what's going on.  We're here, we understand and we want to help!!

Love,

Eldri 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2584
Joined: Mar 2013

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.

Northwoodsgirl
Posts: 527
Joined: Oct 2009

Hello ktp2131, Thank you for posting your cancer fight. You have been through so very much....This cancer is so complex and each of us cancer fighters are so unique and yet have much in common. Clinical trials candidacy all have strict criteria and anyone can miss eligibility by the smallest of criteria sometimes. Thanks for sharing your story. I will keep you in my prayers. I am sure others will add support as the days go on. 

Lori

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