Endometrial Stage 1

I was where you are right now just a few months ago. Everything is overwhelming. But there are a few things that you might have to tell people here before they can help you. This site is amazing and people will come tell you their stories. It helped me a lot.

First thing, though: how were you diagnosed? You don't get a "stage" until you have your hysterectomy.

For example, I had a biopsy at the gynecologist and they didn't have enough tissue. After that, I had a D&C, and they told me the type of endometrial cancer (adenocarcinoma) and the type of cells (type 3, which was aggressive). Then I had the hysterectomy to take that tumor out, and when I had the operation, they could see that it hadn't spread, etc. So I was told I was stage 1a, type 3.

I had a robotic-assisted operation, and was on my feet the next day. I only stayed at the hospital for one night. They wanted me walking. But I stayed out of work for 6 weeks. Two weeks after my operation, the five little cuts I had were healing nicely. Because of the stage 1a, I only had vaginal radiation, 3 treatments.

And also, your gynecologist should not be the one performing the operation. If it's cancer, a gynecologist oncologist should be doing it.

More people will answer soon. Breathe. It might not be as bad as you think. Hugs.

My gynecologist thought I had Stage I, Grade 1 and would be cured with a hysterectomy. Sadly, after the hysterectomy and the pathology report was in, I was either Stage II or III - they couldn't tell since they didn't take any lymph nodes, but worse, a Grade 3 cancer. It was quite a shock! Not that this will happen to you,  but staging and grading can't really be done until after surgery. The surgery was easy - in and out of the hospital in less than 24 hours. Chemo was rough for me but other women continued to work right through it. I did not have radiation. Knock on wood, it has not returned and that was almost four years ago.

Best of luck!

Love, 

Eldri 

Sherbear6 said:

Diagnosis

hi primavera. 

I had a D&C And the Doctor Who performed it is the one that said I had stage one. He was my regular gynecologist and has recommended me to a oncologist GYN. But I have not heard from them yet to schedule my appointment or my hysterectomy. 

Sherri

 

My gyn oncologist made a "guesstimate" of my stage during my first visit from doing a pelvic exam. He was guessing a stage one or two. My final pathology put me at a stage 3a. The takeaway is that nothing is certain until the pathology report from the hysterectomy is finalized and plans for treatment can't be settled on until you know exactly what you are dealing with.

People mean well when they want to share there prior experiences or 2nd hand stories and advice with you, but you are right that it's not helpful. There are so many variables involved and the science and techniques keep changing so quickly that you should let it all go in one ear and out the other for now. Your doctor is the best source for what he's planning to do. Keep reading the different threads here to learn more, get helpful tips and figure out what questions you need to ask; if you have questions you can't find answers to, just ask and someone usually can help you with it. 

You'll see as you read here that it takes time to get through all that you are facing from diagnosis, to referrals, testing, surgery, recovery, and treatments if needed. Waiting for things to progress is always hardest because of the anxiety you are dealing with, but hopefully it will help you to know that waiting has happened to us all and that it's ok because the cancer is not growing as fast as you may be worrying it is. Take things one step at a time and don't worry about what comes next until you have to. It helps for coping with the anxiety. Focus on getting settled with a gyn oncologist first and then take the next step when you know what it is. This whole business is like having an elephant to eat. It's a lot, but its doable if you take just one bite at a time.

We are sorry that you have to deal with this.   You have described one of the best situations for this diagnosis.   Your gynecologist has said stage 1 based on the fact that 80% of endometrioid endometrial cancers are found to be stage 1A after hysterectomy.  Your chances are very good that you are 1A.  If you are 1A endometrioid they don't usually recommend any further treatment.  But you won't know your stage until after surgery.  We have all found this diagnosis si a game of probability.  AS mush as we want cut and dried answers, you will always get probability.  and your chances are really good.  

We are here for you.  Sorry to hear about your diagnosis, but you can do this.   It sounds like you need to find a doctor you trust.  Gynecoligical Oncologists seem to be a very emphathetic group for the most part.  There are lots of women in the specialty too, which might make you more relaxed.   You have described a good biopsy.  Differentiated means it is not so mutated and hopefully will be an early stage.  You probablility of that is very high.  We have quite a few new members here recently, and we have said before, you will find that with this disease nothing is cut and dried.  Pathologists can look at the same slide and call it different things.  And stage can only be determined for sure after your hysterectomy.  You will need someone with you after your surgery in your room.  You will be sedated and need someone there to hear what your doctor says.  I had a laparoscopic surgery, and then the surgeon decided she wanted to remove my uterust through my abdomen because I never had children so I suppose it was a tight fit.  I had both punctures and an incision.  She had me sign a consent for both before surgery.   I don't feel my incision held me up at all.  I had very little pain after surgery, but I did take the pain medication for two days.  I became consipated so stopped, as I did not want that to become a probelm.  I went home 24 hours after surgery.  I did not have trouble walking or getting up out of bed.  It is really important to keep mobile.  The more you move, the quicker you will get back to normal.  I had the anxiety too.  Some of the pain medication can give you weird drams, and I kept imagining a lion sitting on my bed ready to punce.  In the end I had to. move to a different bed to sleep and that helped.  I am an RN and realized I was having some o the symptoms of Post Traumatic Stress Disorder.  You can read about it at the Mayo Clinic website.  It says one of the causes is a life thretening diagnosis.  Other women will jump in to the conversation.  You will get more replies if you make a new comment.  You have posted at the bottom of an old post and many women will not see this.  In the end I was 1A serous with no residual malignancy in the hysterectomy specimen.  The only serous that doesn't need further treatment.  I had my one year anniversary on July 16.  No evidene of disease.   

Sherbear6 said:

Not an old post

hi Forherself

i just started this post this week.  I was also diagnosised last week same as elainegent.   

I would like to know how long people where not able to drive, work, leave this house etc. 

and who had chemo after and why..

 

thanks

Sherri

Welcome. I think a lot of the answers will depend on the individual.  I had a robotic surgery and was up walking around the next day. Needed pain meds for two days and then felt really good.  Was able to do stairs and go anywhere I needed, but not allowed to lift over 5 pounds for at least 4 weeks, or drive for that long either.

I had chemo because my surgery pathology indicated Stage IVB, Grade 2 instead of the Stage I, Grade 1 they had hoped for after the biopsy. 

Many of us have details about our surgery and treatment in our bios - hope you can get some more detail there!

Sherbear6 said:

Not an old post

hi Forherself

i just started this post this week.  I was also diagnosised last week same as elainegent.   

I would like to know how long people where not able to drive, work, leave this house etc. 

and who had chemo after and why..

 

thanks

Sherri

Sorry I was thinking of another post with someone else who said ther were recently diagnoses with early disease.

I don't work (retired RN) so I cant' say when  you return to work.  Others will answer.   I did drive after I stopped the pain medication.   I had an incision and laparoscopic punctures and I had very little pain in my recovery time.  I went home after 24 hours of surgery.  Women recommend taking a pillow to support your abdomen aon the drive home.  I don't remember any pain on the way home.  I had one puncture wound that wouldn't heal.  I could feel a piece of the suture poking out.  It was removed and then it healed.  My recovery was really uneventful.  I did get a little constipated so stopped the pain med, and that cured it.  Waiting for the biopsy report was by far the hardest part.