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Endometrial Stage 1

Sherbear6
Posts: 6
Joined: Jul 2019

I was just diagnosed last week with stage one Endometrial Cancer.  I am anxiously waiting to hear from the GYN oncologist. It’s been almost a week when I was told it would only take 72 hours. I already called my GYN and they are trying to move things all along. I haven’t told a lot of people yet however some of them I have told seem to think it’s their need to give me all kinds of advice. To tell you the truth the advice is  becoming more overwhelming than the diagnosis. My GYN seems to think that I will have a hysterectomy  and that will ratify the cancer. What I wanna know is what are the chances of it coming back? How long will I be off my feet with my hysterectomy. Meaning how long will I need to stay in bed, how long will I not be able to drive, when will I be able to go back to work? I know these are all answers the doctor will be able to give me I just wish I had the answers now.

Primavera's picture
Primavera
Posts: 70
Joined: Mar 2019

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.

Sherbear6
Posts: 6
Joined: Jul 2019

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

 

Primavera's picture
Primavera
Posts: 70
Joined: Mar 2019

You should call for an appointment with your oncologist gyn. That goes before you can schedule the hysterectomy. And before your hysterectomy you have to have the CT scans. I was diagnosed on March 27 and my gynecologist did not recommend an oncologist gyn, she actually picked up the phone and called herself. I had grade 3 cells so she told me they were hoping to catch it on time if they acted quickly. My gyn knew the oncologist would be ordering CT scans, so she ordered them ahead of my visit with the oncologist. I had them done next day. When I got to the oncologist gyn, she said "because it's aggressive, I'm going to order CT scans" and I said they were already done and should be in the system. CT scans were clear, so she decided on the Davinci surgery.

That all happened beginning of April and on April 15 I had my hysterectomy and it hadn't spread, lymph nodes were clear, etc.

Don't wait for them to schedule your appointment. Or at least call them and try to find out how is their calendar and when you should expect a first appointment to talk about the hysterectomy. If they're too busy, there are always other oncologists. I was sent first to a different doctor, but when my gyn found out she didn't have appointments available, she said I should go with another doctor on her team. Luckily there were 3 or 4 in that group and I was able to go to someone else 3 days later.

MAbound
Posts: 826
Joined: Jun 2016

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.

Sherbear6
Posts: 6
Joined: Jul 2019

thank you for the comments.   I know people mean well, but I know my situation will be different.  

Are you in remission?    If yes how long.

Hugs

Sherri 

 

MAbound
Posts: 826
Joined: Jun 2016

I finished chemo Aug. 31, 2016 and radiation just before Christmas 2016. My original gyn oncologist counted time from when I finished chemo; my current counts from when I finished radiation, so take your pick. I was on Megace for 18 months after radiation, so in reality I've been out of treatment since last September. For me, the big milestone was being cut back to every 6 month checkups from every 3 months. It was like I'd been given my life back.

EZLiving66's picture
EZLiving66
Posts: 1318
Joined: Oct 2015

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
Posts: 6
Joined: Jul 2019

my gyn said The same thing.   Stage 1 grade 1 

hopfully I will get an Appointment tomorrow 

ready for plans

 

Forherself's picture
Forherself
Posts: 159
Joined: Jan 2019

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.  

elainegint
Posts: 9
Joined: Jul 2019

I am 68 years old and was just diagnosed with endometrial cancer and have my first oncologist appointment next week. After a D&C and polypectomy,  the pathology report found cancer. According to my gynecologist, it is was found early, is well differentiated and very contained within the uterus and a hysterectomy will resolve the problem.  I'm a real doctor / surgery phobe in general, but with this my anxiety is over the top. Thank you Xanax. I live alone and am concerned about what I will be experiencing and needing during recovery, what kind of help will be needed and for how long.

I would appreciate any information you could provide t help alleviate my angst.

Forherself's picture
Forherself
Posts: 159
Joined: Jan 2019

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
Posts: 6
Joined: Jul 2019

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

Armywife's picture
Armywife
Posts: 261
Joined: Feb 2018

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!

Forherself's picture
Forherself
Posts: 159
Joined: Jan 2019

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.  

MugsBugs
Posts: 103
Joined: Jan 2018

i was where you gals were  little over a year ago!  You are in the hardest part of your journey right now.  The unknown is scary.  If you have been diagnosed with stage 1 the hysterectomy will probably take care of it.  I was stage 1, grade 1 after surgery.  My Gyn/once said recurrence is probably 1% - so really good odds!  The hysterectomy wasn’t as bad as I anticipated.  1 night in the hospital. You won’t be allowed to do anything strenuous for 6 weeks (read no housework). The pain wasn’t as bad as I anticipated either..  I tried not to take the opioids but Tylenol worked a little.  I gave in and took the prescribed pain meds and it was like a miracle drug.  After 3 days I didn’t need them any longer.

As Primavera stated, take a breath!  I found so much good advice from this group that made surgery and recovery so much easier!

Good luck!

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