just diagnosed with endometroid adenocarcinoma stage 1

janrose828

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

Welcome

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

Hello

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.

 

thatblondegirl

Welcome, janrose!

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

Hello - I am recently

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

janrose, please stop back and

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

Harmanygroves

Checking in to say Hello

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.

 

 

janrose828

https://csn.cancer.org/discussion/comment/1685416#Comment_1685416

You're not gonna beleive this but I never got these answers till today .. almost 2 years later from when I wrote them.. It was weird reading over them and how afraid I was.. My Hysterectomy was July 7, 2021.. Almost 2 years.. I was Grade 1, Stage 1 A, LVSI. I only had 29% invasion.. So I feel I am very lucky.. As far as the hormones, I do miss my Estrogen.. but of course no doctor will prescribe them. All that estrogen does for the womens body.. so mine is falling apart. .Saggy skin, different heart problems, foggy brain, arthritis and achy joints. . I had none of this before this operation. Even. my boobs are down a couple sizes and they are hanging.. LOL. but that is not important. What is important is that I didnt have a higher stage and that I am doing fine.. The operation went well and I did rest and not lift ( got a grabber to use ) didnt bend over for anything.. I feel good except for things that are going on inside that of course you cant control from age ( and no hormones.. LOL.). I was so afraid when first diagnosed, but it wasnt really that bad, and I am thankful to God that I am still here.. Thank you to everyone that answered me even though I am just seeing it now.. it was all very reassuring and I am grateful for all your answers, even now.. 😘

Momschooling

I am struggling without estrogen, after surgical menopause this past January I was hanging in there, but letrozole has turned this into another level...it's amazing how much we depend on hormones to get through daily life.

janrose828

https://csn.cancer.org/discussion/comment/1706437#Comment_1706437

Tell me about it.. I cant even beleive how Estrogen works everything .. I have had so many ailments and they are all do for lack of estrogen Even my skin is all sagging and wrinkled.. No matter how much cream I put on it. .Also my boobs are flat and sagging. My Cholestrol is high, I am forgetting more than ever.. All this besides the cancer.. it's horrible.

Momschooling

https://csn.cancer.org/discussion/comment/1706455#Comment_1706455

I am hoping to get off this after a year, it's really hurting my stomach which I see is not uncommon for letrozole on some of the breast cancer boards. I am afraid to try other AI's because there could be worse side effects, I am thankful it's not worse, so trying to hang in there lol. BTW one thing that has been helpful is Kindra vaginal lotion, for the drying aspects of no estrogen...