endometrial adenocarcinoma, grade 3

[Shanystu]

Hello! I was just diagnosed with endometrial adenocarcinoma, grade 3. I have my surgery in a week, with a gynecological oncologist, and I can’t help but wonder if I’ll most likely be receiving radiation or chemo. I’m not that worried, but curious as I will have to wait 2 weeks to be staged.

I had fluid leaking quite a bit a month ago, I actually thought it was urine, then bloody urine. Then realized it was vaginal blood later.

I’m 64, overweight a bit, but active and healthy. I am not bleeding much anymore, but I don’t like the pelvic pain. I think I’m think I’m tired than usual.

I’m wondering if anyone can relate? Kind of a lonely diagnosis, but I do have a lot of support from kind friends.

Thanks!

[Merma Moderator]

Yes, we can all relate. You are not alone. Call the helpline and we’ll get you good information and, if you’d like, sign you up for our Newly Diagnosed and In-Treatment Uterine Cancer support group.

I was ex in 2015 with Stage 1B, Grade 3 adenocarcinoma. Since then, I’ve had 4 recurrences. I am in remission again, but will always be on something. Right now it’s a bc combo: anastrozole and Ibrance. I swim a lot and chase after grandchildren. I’m living my life.

Welcome to this forum!

[Shanystu in reply to Merma]

Thank you for the info of the ‘newly diagnosed’ group! I’m headed there now!

[Shanystu in reply to Merma]

Yes, please sign me up! I realized I can’t find that group!

[Kathy_SHARE Moderator Ambassador]

Hi, I agree with Merma and I can certainly relate to your situation.

In 2015 I was diagnosed with Stage 1A Grade 3 endometrial cancer. My symptoms were like yours, a vaginal discharge that I thought might be an infection. I didn't have any bleeding, but I went to my gynecologist who thought it was polyps. I had a procedure to remove them and that's when she diagnosed the cancer. She was shocked at the diagnosis since the usual symptoms are vaginal bleeding which I never had. I had a hysterectomy with removal of tubes, ovaries and multiple lymph nodes. I was staged at 1A. Even though it was found at an early stage, by gyn oncologist recommended chemo and brachytherapy. I had 6 rounds of chemo and 5 brachytherapy over 4 months and I was followed with CT scans periodically to check for any recurrence. I was 67 at the time of diagnosis and have been cancer free for the past 9 years. I follow up every year with my gynecologist and so far, I've been okay.

I have always been a healthy person and cancer was the last thing I ever expected to happen to me. But I got through it with the help of family and wonderful physicians .

The experience will always be in the back of my mind but I am pretty active, live my life and go to the gym for fitness exercise and yoga and thoroughly enjoy my twin grandsons.

Please join our SHARE support group for Newly Diagnosed and In-Treatment Uterine Cancers support group. We are a group of women who are all at different points in this process, and we share all our experiences to help each other get through this.

Stay in touch and let us know how you are doing!

[Shanystu in reply to Kathy_SHARE]

Hello Kathy,

Oh that is all kind and so useful! I am realizing the symptoms vary a lot. I read an NIH paper on that topic, and one can see how it’s complex. Yes, now I’m not bleeding for 5 days, but I have pain, just on my left side, like menstrual pain. Of course as I’m pre-surgery I’m wondering if the pain means anything, and obviously I just need to wait for results. In other words, I should just give it a rest!

You were so smart to be seen with something unusual. It sure worked out well for you, and I really appreciate your story very much. I’m quite hopeful about my story.

Thank you!

Here’s a link to what I read for anyone interested, to support my thought that symptoms vary and it is difficult to study, for doctors also.

liebertpub.com/doi/10.1089/...

[Kathy_SHARE Moderator Ambassador in reply to Shanystu]

Get all the information you can. I read a lot of NIH articles too and found many of them helpful. Some of the statistics made my eyes glaze over ☺️ but I learned a lot.

I wish you a speedy and easy recovery from your surgery. Make sure to write down all of your questions so you’ll be able to ask your doctor whatever information you need about your diagnosis and any treatment options. We need to advocate for ourselves and make sure we get all the information we need.

I know the wait for surgery and results can seem like forever but stay positive and reach out for support .

Wishing you well!

Kathy

[Cat1966 in reply to Kathy_SHARE]

Hello Kathy

I ve been recently diagnosed and waiting for an appointment with the oncologist.

In the post you were mentioning the newly diagnosed and in treatment support group.

Could you please share the link.

Thank you very much

[Kathy_SHARE Moderator Ambassador in reply to Cat1966]

Hi.

So sorry!! I should have included the link.

sharecancersupport.org/uter...

You can use the link to get a lot of information. There’s a place to register for the support groups and other useful information.

If you have any problems with the link, let me know.

[Cat1966 in reply to Kathy_SHARE]

Hello Kathy,

Thank you very much for sharing the link!

I took a quick glance and it looks super informative. I found a webinar for a newly diagnosed that I am very interested to attend.

[Kathy_SHARE Moderator Ambassador in reply to Cat1966]

Hi,

Yes, there is a ton of information on the SHARE website and I'm happy you found an interesting webinar to check out. Those are always informative and provide lots of information.

All the best to you and let us know how you're doing.

Kathy

[Tinydancer1]

I was also diagnosed with Grade 3, but that, as well, as stage (mine was 1A) is ultimately determined through a biopsy after the removal of the uterus and the other parts of the reproductive system. Prior to my surgery, a polyp I had removed and biopsied showed a far worse scenario than the ultimate biopsy after my hysterectomy. So be open to the fact that diagnosis is not complete yet, and you have sisters that are holding your hand, even if it’s virtually. In fact, look up HysterSisters, a community that will also provide wonderful support through your pre and post surgical experience.

[Shanystu]

Well, your comment is extremely helpful tome at this time! I’m reading roo much into the ‘grade 3’, I can see that now! Thank you. I’ve seen memtion of the HysterSisters, but hadn’t clicked. I will! Thank you for taking the time to respond.

[Ziggysmom]

I have same diagnosis from 3 1/2 years ago. I had chemo and radiation and so far doing well. I suggest you join the virtual support group through SHARE. We meet momdays at 7 Eastern time. And, there's a newly diagnosed group also on Thursdays. Both are twice a month. The newly diagnosed group is today June 13. You will get lots of support and information.

[Shanystu in reply to Ziggysmom]

thank you. I'm going to join those groups. I appreciate your advice I'm glad to know you got better. I'm realizing it might be a long road.

[SirP]

You're very lucky to have so many friends.i was abandoned. I have stage 4b Papillary serous endometrial adenocarcinoma. That means it's metastisized outside of my uterus and in two many places to use radiation. You are not alone. Keep in touch

[Merma Moderator in reply to SirP]

Hi there!

Do you know that SHARE has a support group for metastatic uterine cancer patients? Our next one is on Sept 9th.

[WTLS]

Your experience is similar to mine; though my doctors did not tell me the severity of the cancer until after robotically hysterectomy and removal of 2 lymph nodes. Mine is same diagnosis, Stage II, Grade III. My tumor was also gene deficient (lacking cancer fighting cells). My doctor initially only recommended 6 rounds of Chemotherapy combined with immunotherapy (Keytruda). I learned from speaking to other Uterine Cancer survivors and review of medical journals radiation has greater long term success for opreventing recurrence. I am having a bit of friction with my oncologist over my insistence on continuing Keytruda and completing radiation. I am currently in the intake process at MD Anderson in Houston to see a specialist in this specific type of Uterine Cancer. This type of cancer is very rare and the American Cancer Society recommends that you seek out a doctor familiar with treating it specifically. I am available any time if you need support or have questions.