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Question about treatment and keeping ovaries

ChristinaWH
Posts: 3
Joined: Jan 2021

Hi, this is my first time posting and I am glad to have found these boards.  One year ago I had my uterus and fallopian tubes removed and found out that I had endometrial cancer, adenocarcinoma, FIGO stage 1.  I had 2 D & C's prior to the surgery that came back inconclusive.  I kept my ovaries because I did not know that I had cancer and my main reason for the hysterectomy was 7 months of heavy bleeding that was not controlled with hormones or D&C.  I never had any staging or pelvic washes etc during surgery because I didn't know about the cancer. I did have a PET/CT which came back fine.  All and all I would say that my medical care has been bad, I have great insurance and I am in the Washington University medical system so good hospitals.  I did have genetic testing and I do have a mutation that can affect ovarian cancer.  My doctor told me to keep my ovaries until my hormone levels show that I have entered menopause and I now have so plan to schedule later this spring.

I have been having terrible stomach issues, heartburn, and GERD the last few months and I have notified my Oncologist and they say not to worry about it my CA125 was normal.  I am on a new prescription for it and it is a bit better.  I was wondering if anyone else has had such symptoms and if my treatment seems standard.  I think that while I am grateful my cancer is very treatable I feel like each new symptom is cause for alarm especially since I was not staged during surgery and I still have my ovaries.

I would appreciate any advice or input.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

Christina, I would suggest a second opinion with a gynecologic oncologist.  I suspect the other wonderful ladies will be along with their personal experiences, but it sounds like you need a different perspective.  

 

ChristinaWH
Posts: 3
Joined: Jan 2021

Hi, thank you for the response.  I do see a gynecologic oncologist at Siteman Cancer Center.  I think the disconnect came from my regular gynecologist doing the hysterectomy and then sending me on to the doctor that I have now.  I probably should have been referred to the gynecologic oncologist prior to the surgery.  I was just clueless.

Forherself's picture
Forherself
Posts: 556
Joined: Jan 2019

You have found a great place for support and information.  It sounds to me like you didn't have a cancer diagnosis before the hysterectomy, but after.  That explains why a regular gynecologist did your hysterectomy.   It also sounds like you have a Type I endometrioid cancer, the one that is easier to treat.  Your staging was incomplete, but now you are in the care of a gynecological oncologist.  The CA 125 is not a reliable predictor for everyone.  But the PET scan is very reliable.  Stage 1 has 1A 1B and 1C.  Depending on how much cancer there was in your uterus.  It sounds like you don't have confidence in your care right now though.  Second opinions are quite common, and certainly justified in your case.  ¥our team right now may be right, but it's nice to make certain they are.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

Christina, I don't think you were clueless - I didn't know a thing either and just got lucky my gyn knew to put me in a gyn oncs hands.  

Now that you explained it all, ForHerself has a good read on it and I agree.  A Type 1 cancer is usually handled with just surgery, but you are working with the right doctor now.  They will make a plan for you and let us know what that is.  

Type I is let agressive than Type II - but cancer is cancer, right?!  It is scary and overwhelming.  

zsazsa1
Posts: 553
Joined: Oct 2018

Just to reassure you, anxiety/stress can make GERD much worse.  So it could be nothing more than that.  But meanwhile, if you have a genetic variant that increases the risk of ovarian cancer, I think you are right to have them out asap.  Plus since they do it laparascopically, they can have a look around while they're in there.  Have it done by a good gyn-onc surgeon.  THis is not a routine oophorectomy - it's also a look see for metastases, with a pelvic wash and potential biopsies, as long as they're going in.

Quilter_1's picture
Quilter_1
Posts: 114
Joined: Mar 2019

I see my Gyno/Onc at Siteman Cancer Center off of Kingshighway in St. Louis.  My gynocologist referred me after doing a biopsy due to spotting.  I believe she, then he saved my life.  I had my surgery, chemo and radiation all done at this location.   A great place for treatment, I wish you the best of luck.

Linda

alicia2020
Posts: 161
Joined: Sep 2020

Don't let anyone but a gynecological oncologist do your surgery. You should get your ovaries removed sooner than later. Make sure he plans on doing pelvic washes and taking lymph nodes for staging. CA125 is not predictive for everyone, Mine was a 20 before I had 2 surgeries in which cancer was removed from 2 different areas in my pelvis! And after 2 surgeries it was up to 66! (Other things can cause CA numbers to rise, including inflammation.)After 3 rounds of chemo it fell to 52, 32 and then 21. Under 35 is supposed to be the "magic' number....but I'm not going to be content with any number that's not a single digit!!

I wish you the best of luck! You are in very good company on this board! Lots of wonderful women with experience, knowledge, and compassion! Reading ladies "About Me" pages is very helpful and old threads contain tons of valuable information.

XO, Alicia

Tamlen's picture
Tamlen
Posts: 316
Joined: Jan 2018

Just want to echo one thing others have said -- don't rely on the CA125 for uterine cancer. It's not a reliable marker for uterine cancer for everyone. I was diagnosed at Stage IVB and my CA125 at diagnosis was 8!

ChristinaWH
Posts: 3
Joined: Jan 2021

Hi all,

 

I am just reading through the comments.  I appreciate all of you so much.  I feel a lot more reassured that having my ovaries removed is what I need to do. 

The word cancer is very frightening and I guess it is normal to think every ache, pain, and sniffle is cancer now.  Good to have the information about the CA125.  

Linda, I see Dr. Hagemann at Siteman.  Can I ask who you see?

Thank you all so much for the responses.

Quilter_1's picture
Quilter_1
Posts: 114
Joined: Mar 2019

I see Dr. Matthew Powell, he's on the 13th floor of the Sitema/CAM building.  We (dh and I) both love him.  Not only is he very good at his job, but, I feel that he genuinely cares about me and my quality of life.  Dr. Hageman may be in this same group, all extremely qualified.  In March it will be 2 years since my last treatment, after my December checkup, I was moved to checkups every 6 months. So far, so good.

alicia2020
Posts: 161
Joined: Sep 2020

i just wanted to add that no one here wants to scare you! But I think all would agree that when dealing with any cancer it is much better to be safe than sorry! Like your GERD problems...they are very likely just that, but i think I can speak for most of us when I say we WISH we had known about our cancers sooner! Some of my first words to my GYN were (keep in mind I am 65 & way past menopause!), "Take it all. If there is cancer in there, or some chance of it, get it all out!" There's no cancer history in my family, but most of the women have had hysterectomuse for other reasons, so I found myself thinking all women should have it all removed after menopause! That may seem radical, but I can't tell you how much I wish I had not left that stuff sitting for there for 15 years waiting to bring me cancer!

And Wow...if you read some of our stories...including mine....you will see tha...so sadly, you are not the first woman to be screwed over by her simple GYN. It's just my opinion, but those people are out there making themselves rich performing hysterectomies when they have absolutely NO business doing it! What they SHOULD do is pass their patient to a gynecological oncologist if there is any hint that there might be cancer. Too many of us have had to undergo TWO surgeries, followed by extra weeks or months waiting for pathology and treatment to begin. 

Be good to yourself. Try to be patient! And use us for anything you need!

😎, Alicia

Forherself's picture
Forherself
Posts: 556
Joined: Jan 2019

There arent enough oncological gynecologists to do every hysterectomy.  It is a super speciality.  On this board we tend to forget that the majority of women who have hysterectomies don't have cancer.  

alicia2020
Posts: 161
Joined: Sep 2020

and I’m sorry to get on my soapbox, Ladies. My GYN just did me so wrong that it’ll be a while until I’m not over sensitive about it. :(( And living in this huge metropolitan area where we are & there are many, many doctors available, I kind of forget that that is certainly not true everywhere.

Alicia

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