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just diagnosed with endometroid adenocarcinoma stage 1

janrose828
Posts: 7
Joined: Jun 2021

I was just diagnosed with stage 1 utereine cancer and have an appointment with a gyn/onc next week.  I am so nervous about all this. .I am on HRT and they told me to just stop it.. I dont want to stop it cold turkey and I am hoping I can take it after surgery.. I wont be able to function without it. . has anyone else had this problem..  Also, the hysterectomy is so scary. .doesnt all your insides fall down??  

cmb's picture
cmb
Posts: 723
Joined: Jan 2018

I'm very sorry you had to join this board. It's always so shocking when learning you have cancer, but I'm glad to read that you'll be working with a gynecological oncologist for your surgery. There are a couple of links in the FAQ at the top of the discussion list that you may find helpful right now:

 What do you wish someone had told you? 

Tips for surgery and after? 

I never took HRT, so I can't answer your question about continuing to take this in the future. Hopefully others will share their experience with this.

Early on I occasionally wondered how the remaining organs reposition themselves after the hysterectomy, but it all seems to work out.

MAbound
Posts: 1150
Joined: Jun 2016

Hi JanRose,

welcome to the club that nobody wants to belong to. So sorry that you needed to find us, but we're an active group!

I suspect that you meant grade 1 rather than stage 1 since you haven't had your surgery yet. Grade refers to how much your tumor cells resemble normal cells vs. cancerous cells. Grade 1 means your tumor has more normal than cancerous cells and grade 3 would mean your tumor is pretty much all cancer cells and would have upped your odds for recurrance after treatment. Grade one means that they didn't catch it while it was pre-cancerous, but it was still likely caught early.

Endometriod adenocarcinoma is the hormone driven form of uterine cancer and it is the most common and most treatable form of uterine cancer. The rarer types and higher grades are not hormone driven and are very aggressive and have higher odds for recurrence after treatment. Be glad you don't have one of those even though you really don't want to give up HRT. HRT vs cancer?....it should be an easy choice...really! You do not want to give this cancer an opportunity to become malignant and no longer curable. Do what you have to do for a cure.

Staging can't be done until after you have your surgery and they test removed tissue for how far the cancer has spread. You'll have pre-surgical testing to give the surgeon a guide for how extensive the surgery needs to be. They often also remove what are called "sentinal" lymph nodes for testing to check for spread outside of the uterus. Hopefully, your gynecologist has now referred you to a gyn-oncologist for your surgery by. Do not let a gynecologist who doesn't have this specialized training do your surgery!! A gyn-oncologist may try to give you an initial estimate of stage when he meets you, but nothing would be written in stone until the pathology report on tissue removed during surgery is written.

After surgery, you are right, your pelvic organs do need to re-adjust, but they give you lifting restrictions while you recover to prevent what is called Pelvic Organ Prolapse. Just don't cheat on how much you lift or exercise while you are healing and that shouldn't be a problem to angst about.

Feel free to ask any questions or just vent about it all if you need to.

 

alicia2020
Posts: 162
Joined: Sep 2020

We all know how you're feeling now and it is scary. We understand. The day I joined this board I was terrified and had so many questions and needed reassurance. You have definitely come to the right place. I agree with everything cmb & MAbound have said. Reading through the most recent threads here you will learn a lot about everything! 

You're in my prayers, Alicia 

woodstock99's picture
woodstock99
Posts: 96
Joined: May 2021

Hello - I am recently diagnosed and just a week post-surgery and do not have my pathology yet but I know how you are feeling.  Try to breathe and take one step at a time.  Everyone here has been extreme[y supportive, helpful and knowledgeable. I have learned a lot so far.  Be strong!  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

janrose, please stop back and let us know how you are doing.  

Harmanygroves's picture
Harmanygroves
Posts: 216
Joined: Jun 2021

Janrose828, the first month is the hardest. There is a huge learning curve, and you will most definitely learn a lot. It is completely valid and legitimate to have many fears and concerns, including some you've already mentioned. 

--as suggested above, take your recovery very seriously, following your surgery. No lifting! Let someone else vacuum and do laundry.

--your internal organs will shift around, but they won't fall out. The gyn oncologist / surgeon won't remove your vagina---but if you get a complete hysterectomy, he or she will remove the uterus, fallopian tubes, ovaries, some lymph nodes for testing, and perhaps a bit of the vaginal canal near the cervix (which will also be removed). The vagina is sewn at the top to create a "vaginal cuff." Instead of a cervix that leads from vagina to uterus, you'll have stitches at the top of the vagina that will heel up, and keep those organs inside.

--your hormones are going to be definitely off balance for a bit, but that's better than cancer. If doctors says stop the HRT, stop it immediately. Tell doctor your concerns.

 

Okay, take care. BTW, I was diagnosed with Grade 1 uterine adenocarcinoma in mid January. They thought I'd be staged low, and I am, somewhat--Stage 1 B. However, owing to 83% myometrial invasion and LVSI, I am at high-intermediate risk of recurrence. I'm currently finished with four rounds of brachytherapy, and will have the last one next Thursday.

 

 

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