Endometrial cancer (Recap of Lost Posts, Topic Created by lab44 on Jan 19, 2019)

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

lab44

Jan 19, 2019 - 1:26 pm

Hi,

My story....diagnosed w DCIS breast cancer in 2010, had bi-lateral mastectomy in 2011.

Just diagnosed w endometrial adenocarcenoma figo grade 1 with tubulopapillay & mucinous features, in background of endometrial hyperplasia w focal atypia.

Recommended treatment is full hystarectomy.

It sucks that I'm dealing w a 2nd cancer but handling it ok. I want to live & be w my children (twins who 9 y.o.).

Looking to hear the good, bad  & ugly of those who have had a complete hysterectomy.

Thanks in advance.

 

paris11

Jan 19, 2019 - 2:24 pm

So sorry.  Long story short.

So sorry.  Long story short.  I was dx with endometrial cancer in 2007.  In 2008 I was told less than a year to live.  In 2015 I switched to Tamoxifen and Megace.  I have been 42 months cancer free.

best ,

Connie

 

MAbound

Jan 19, 2019 - 3:26 pm

Welcome lab44

So sorry that this is happening, but welcome anyway. Given your screen name are you young?

Having a hysterectomy when you are pre-menopausal carries its own issues compared to when you are on the cusp of or past menopause, but the surgery itself isn't so bad.

Many have it done robotically if their uterus isn't too enlarged by the cancer or fibroids and only spend a night in the hospital. Pain from the gas used is often the biggest issue and having a belly binder and Gas X on hand really help as well as getting up and walking around a lot as soon as you can.

As a grade 1, your cancer has likely been caught early and the surgery as well frequent follow-ups may be all that's needed to cure you. The exception to that would be if you had a more aggressive type of cancer like UPSC or MMMT where prophalactic chemo or radiation might be considered, but that's not you. The pathology done after surgery on the tissue removed will determine the stage and confirm type of uterine cancer you have.

Were you on Tamoxifen therapy for your BC? That is a risk factor for getting this cancer.

I'm sorry to hear that you're having to deal with a second cancer. That has happened to others on this board like Double Whammy and Janaes. It's a raw deal and so unfair, but it happens. It's good that you and your doctors were on the ball finding it and I suspect yours is not going to be advanced. 

Good luck!

 

Forherself

Jan 19, 2019 - 3:24 pm

Well take a breath and meet some wonderful women

Hi, and welcome, and sorry to hear about your diagnosis, you found the best place for knowledgable, understanding, support.  I am realtively new, but I have learned so much reading this discussion board.  There is someone here that will answer any question you have.  

You asked for stories.  I had bleeding in Dec 2017.  Diagnosis of pre cancer cells Endometrial intraepithelial neoplasm May.  I was referred to a University hospital who changed my pathologt report to serous endometrial carciinoma in a polyp.   hysterosalpingoophorectomy July 16.   Path report July 23 no myometrial invasion, no lymph invasion, no washing invasion, no omentum invasion.  Stage 1A with no residual disease in hysterectomy specimen Grade 3.   I elected no treatment just observation.  5% risk of recurrence still scares me, but I am on my course 6 month checkups for 2 years.   I had my first check recently. Everything the same.   Next check July.   

Others will post their stories.  YOur grade 1 is the best.  Hopefully, and most likely, it will be stage 1A, as most endometrioid cancers are found early.  The best of luck to you.  

 

zsazsa1

Jan 19, 2019 - 4:05 pm

Hopefully this has been

Hopefully this has been caught early, and is not an aggressive cancer.  The hysterectomy may be all you need.

I had a robotic laparascopic hysterectomy, and found the recovery to be pretty easy.  Of course, most of us who are on here are dealing with chemo and radiation, too, so that colors our perception of the hysterectomy.  But really, from my experience, it's nothing to be afraid of.  It just wasn't that bad.

 

janaes

Jan 19, 2019 - 5:37 pm

Im so sorry you are dealing

Im so sorry you are dealing with this. I too know what it feels like to have two cancers. I had hodgkins lymphma when i was 20 and uterine cancer at 42. I was mad at the time but with this group and others i made it through. Its been two years since i finished. I too had a daughter at 9 years old at the time. It was hard for her but she was so supportive as well. For her she likes to sing so one day back then she played the piano and made a song about how much cancer stinks. She sang about bald headed ladies. It made it fun for both of us. She also put a plastic bag on her head in support of me going bald. So sweet for a nine year old. 

Come here for support. It sure help me.

I dont know if youll do chemo but just wanted to let you know you are not alone. Sounds like your strong already. Good for you. Fighting to be with your kids is a good reason. Thats what kept me going?

 

Northwoodsgirl

Jan 19, 2019 - 9:19 pm

Second time around

Welcome to the best group of women who are so knowledgeable and supportive of women dealing  all types of  gynecological cancer. I am sorry that you are having to deal with a second cancer. 

Having a laproscopic hystrectomy has a much less recovery time than an “open” abdominal surgery. I hadn’t had surgery before my hysterectomy so had nothing to compare it to.

The below is shared in the spirit of “sisterhood” and not meant to overwhelm you but rather to share with you some suggestions based on my and many others experiences. 

Overall with a bit of planning preoperatively you will be well prepared for surgery and recovery. Having prepared your home ( clean sheets, clean pillowcases, fresh towels, yoga pants , loose tops, a pillow to support your tummy during the car ride home, bring one of the hospital’s blue plastic nausea bags for the car ride home (just in case), also take a pain pill 30 minutes before you are discharged from the hospital, a bedside nightstand to keep what you need nearby once you are home, a warm blanket for napping on your couch, meals in the freezer so you don’t need to cook much, lots of water to drink to keep from getting constipated, Miralax in case of constipation from general anasthesia, a pair of good walking shoes to help motivate you to walk, walk, walk ( helps rid your body of the gas used to inflate your abdomen in order to visualize your abdominal area, ) eat protein foods to help improve healing, the ability to listen to your body as it needs rest to heal, a notebook to write down questions for your doctor both before and after your surgery, and most of all the love of your dear children, family and friends.

Please know we are all wishing you the very best! We will answer any and all questions to help you. 

((Hug))

Lori

 

Tamlen

Jan 20, 2019 - 10:00 am

Advice I got from other wonderful ladies here

I'm sorry to hear you're going through this a second time with a second cancer. You sound strong and that'll be a good thing through this journey, as you no doubt already know.

I was diagnosed just about a year ago and had a full hysterectomy via DaVinci robot. I'm allergic to opioids and opiates, so I was really afraid of the pain I'd experience. But 5 hours after surgery I was already up and walking and went home less than 24 hours after surgery. I was able to climb stairs right away and had very little pain and few problems.

It just stumbled across this piece of research, which got my attention since my Grade 1 endometrioid adenocarcoma cancer unexpectedly spread to my lungs (found there a few months after surgery) making me not Stage 2 but 4B. I wish I'd known about it at the time of my hysterectomy, so I'm sharing it with you:

Unexpected Outcome in Hysterectomy Study

As I was preparing for my hysterectomy, I asked the women here for their best advice. They had lots of it and I followed much of it to good effect:

What do you wish someone had told you?

- Tamlen

 

MAbound

Jan 20, 2019 - 1:02 pm

Excellent Post

I've heard about the concerns with Minimally Invasive Surgery and it sure helped me feel better about having the open abdomen surgery I had even though I developed ileus from the pain meds afterwards and had to go home with a foley catheter for 4 weeks while recovering.

My surgeon was assisted by a urologist to protect my bladder during my RAH and since bladder complications are a big concern during any kind of hysterectomy, it wouldn't hurt to querry your gyn-onc who's going to assist him during your procedure. No surgeon operates alone for this kind of surgery, so it's a big plus to have that kind of assistance. It sure paid off for me.

As far as a pain relief for this kind of surgery, discuss your surgeons plans ahead of time. There are options for heavy duty pain relief outside of opioids. I was started out on IV dilaudid, an opioid, which I really think should be a last resort rather than a first choice. They leave you too woozy to get up walking without help when the most important thing for you to do is walk to get your intestines moving again. And good luck getting help walking unless it's from a family member. Hospital staff have their noses in the computers too much these days. Opioids are also constipating which is the last thing you need after abdominal surgery. 

After I developed ileus (paralyzed intestine), I was switched to IV Toradal, a form of Ibuprofen. It treats heavy duty post-op pain by treating the inflamation that causes the pain. I swear that this is a miracle drug. I was pain free and alert and could finally get up and about on my own. It was so much more effective than the Dilaudid, so if you are facing an open abdomen procedure or can't take opiates, please discuss having this for pain relief with your surgeon first. I wish I had know about it before my surgery. Tamlen, I'm sorry I missed your earlier "What do you wish someone had told you" thread at the time, but I hope this helps you should the need arise for you in the future.

 

MugsBugs

Jan 20, 2019 - 3:08 pm

Sorry you are dealing with 2x

I was diagnosed last year with endometrial adenocarcenoma grade 1, just like you.  I had a full robotic hysterectomy on January 29, 2018.  The worry leading up to the hysterectomy was worse than the actual surgery.  The ladies here helped alot.  The advice made the experience much more manageable.  With grade 1 there is a good possibility that you will not need any chemo or radiation (I didn't) but listen to your gyn/onc.  Just remember to take care of yourself after the surgery in order to let yourself heal. 

I think someone has already mentioned good advice for the surgery but I will reiterate because it was great advice:

1.  Take gasX with you to the hospital - take it throughout recovery.  They blow you up with gas and gasX helps relieve it!

2.  Buy a belly belt (I got mine on Amazon).  Take it to the hospital with you to wear home.  Wear it at home whenever you are walking around - it really helps.

3.  Take a pillow with you to the hospital for the ride home.  I live in a metropolitan area and you can feel even the minor potholes.

4.  Rest - it is going to be hard with twin 9 year olds but it is important for you to rest and not exert yourself for 6 weeks.  We will start feeling like your old self pretty quickly but you don't want to push yourself.  Several ladies here have stated they got hernias after the surgery.

5.  Don't be like me, take the drugs.  They gave me percocet and with all the hype about opoid addiction I was determined that I was only going to take tylenol.  When I finally broke down and took the percocet it was like day and night.  I didn't have much pain after that.  I took it for about 3 days.

6.  Don't be distressed if you gain a lot of weight after surgery.  When I got home from the hospital I had gains 14 pounds overnight - I was distraught - however, the fluid came off quickly and I lost an additional 13 pounds because I didn't have an appetite.

7.  Make sure you have a mild laxative on hand just in case.

8.  I wore a floppy dress to the hospital and wore it home.  If you are having robotic surgery you will have 3-5 scars across your belly right above your naval.  Pants will be uncomfortable for a few weeks. 

Good luck to you!  I will be praying for you!

 

Double Whammy

Jan 20, 2019 - 7:08 pm

Breast and endometrial cancers

I had both at the same time!  I was told that it is not unusual for a woman to experience both breast and endometrial cancer of the course of her lifetime.  I just got them both at once.  That was in 2010.  My breast cancer was treated by lumpectomy, chemo and radiation.  The endo cancer was Grade 1 and surgery was my only treatment for it.  I had DaVinci robotic hysterectomy and had an extremely easy recovery.  In fact, I started chemo for breast cancer at 3 week post hysterectomy.  Good luck to you.

Suzanne

 

PhlebgirlVT

Jan 22, 2019 - 4:08 pm

Endometrial Cancer

Hi!  My name is Stephanie and I just got diagnosed with Endometrial Adenocarcinoma FIGO 1A.

It has caught me completely off guard and I am not sure how I feel about everything yet.  I had no idea I had cancer!  So of course, my first reaction was shock and the second was crying hysterically.  Now, I don't know how I should feel.  I suppose most people would tell me to be happy and part of me is (it sounds weird, but I'll explain in a minute), but the other part of me is concerned.

My diagnosis was a complete surprise to everyone, including my surgeon and GYN doctor.  I had made the decision after many paiful menstrual cycles and migraines that would have a Hysterectomy.  I was already in pre-menopause and knew I didn't want to have children.  I have PCOS (Polycystic Ovary Syndrome) which had caused a heavy period that went non-stop for several months in my early 20's and I had asked them to do the Hysterectomy then, but they stated I was "too young".  So on Dec. 5th 2018 I finally had my Hysterectomy, they left my ovaries because of my age.  The following week, I got the phone call telling me they found a polyp that was cancerous.  It was FIGO 1A.

So I went from not knowing I had cancer, to not having cancer (fingers-crossed) anymore.  They removed the polyp with my Uterus.  So, I would love to be happy that it's been removed, but I now am having some anxiety about it.  How long had it been there?  How long would it have continued to be there if I hadn't asked to have the Hysterectomy?  Should I be worried that because they left my ovaries that it will reoccur? 

I feel like I should be "over it" because they removed it, but I'm not.  Is it weird that I seem to be experiencing some of the emotional, mental feelings that people would normally go through after being diagnosed?  I had the treatment they would have suggested if we had known it was there to begin with (with the exception of keeping my ovaries), so I almost feel guilty feeling this way when the Drs. think I won't need to do anything else and I'm on paper "cancer-free".  I don't want to insult others by calling myself a cancer-survivor or suddenly having all of this emotional stuff come up after the fact.  I guess I feel like I didn't "earn" the term cancer survivor, because I didn't know before the surgery it was there.

Monday I have an appointment with an Oncologist, so I'll have the chance to ask questions which is good.  She will also be able to better tell me if I need any other testing or can just be followed up on periodically.

Like I said, I'm not sure how I'm suppose to feel right now.

Anyway, thanks for letting me tell my story.  I would love any feedback or advice (even if its just telling me I need to sit down, be quiet and thank my lucky stars!)

 

Ribbons

Jan 22, 2019 - 4:48 pm

1A is your stage

1A is the earliest so that is good, I also was a 1A. Did they give you a grade? The grade of the cancer will determine if you are good to go or if you need more treament. Mine was a grade 3 which is not good. Even though my cancer had not spread, it is a rare and agressive kind, so grade 3. I am having chemo as a precaution in case any stray cells escaped elsewhere. I am fairly new here as well, so maybe others will be more helpful.

 

MAbound

Jan 22, 2019 - 8:44 pm

Hi!

And welcome. What a shocking surprise for you! PCOS is one of the risk factors for getting endometrial adenocarcinoma as is early onset periods, late menopause, and weight issues. It's the hormone driven form of uterine cancer and tends to be slow growing compared to more aggressive types like UPSC, MMMT, clear cell, etc. It's highly curable when it's caught early.

Your concern is understandable in spite of catching it early. We all kind of live with that cloud following us no matter how far we get out from treatment. Since you still have your ovaries and there's no screening test for ovarian cancer I suspect that's why you are still worrying. There are pros and cons to having those removed too. You'd be trading peace of mind regarding ovarian cancer for worries about heart disease and osteoporosis for example. It's a choice between different evils.

You may want to look into genetic testing (a blood test) and maybe even genomic testing of the tumor tissue that was removed during your surgery. That information would tell you what you may be at higher risk for in the future if you have genetic mutations or something like Lynch Syndrome. It's generally not covered by insurance and it's expensive, but what you learn would be very valuable for your future and may help with any decision about keeping your ovaries or not.

 

PhlebgirlVT

Jan 22, 2019 - 10:34 pm

Hi

Thank you MAbound!  It certainly was a surprise.  Interestingly enough, I had spoken to my GYN about whether or not they should take my ovaries at the same time as everything else.  She told me about the cardiac concern and told me that is why they prefer to leave them.  She said unless it appeared that there was something wrong with them they would keep the.  I asked her about them because my mother had Endometrial cancer as well.  Her’s was caught during a biopsy.  She was bleeding during Menopause, so she had a Hysterectomy to treat it.  My GYN said that we could do the genetic testing but told me that as you said, it was expensive.  We also would have to wait until we had results before I had the surgery.  At that point I was a few days away from my surgery date and I didn’t want to put it off.  I guess I’ll see what the Oncologist says about the ovaries.  

 

pinky104

Jan 22, 2019 - 10:50 pm

To PhlebgirlVT

Don't feel guilty about calling yourself a survivor.  I heard or read someplace that you're actually a survivor from the minute you're diagnosed with cancer.  However, people often use their date of surgery for when their survivorship starts. I did that for a while. Then I learned from my oncologist that it was when my chemotherapy finished.  I didn't have radiation, but most people have it in the middle of chemo anyway.  

I'm now an over 8 year survivor (with a recurrence two years ago) and I still don't feel like it's safe not to worry.  I had an aggressive cancer and had a less than 15% chance of survival with stage IVb, so I keep on the lookout for any symptom, and so should you.  As time goes on, you'll probably feel more and more safe, but don't assume that it might never come back.  Mine came back 7 years later, well past the "safe" 5 year mark.  Don't let it drive you crazy, though.  I was better prepared for how to handle it the second time around. I wasn't afraid of haing chemo like I was the first time.  I didn't care much for the very invasive surgery, but who does?  We get it over with, heal, and go on as best as we can. As they say, it's our "new normal."

 

Forherself

Jan 22, 2019 - 11:09 pm

Monday appointment

Welcome to this discussion board.  I'm sorry you are dealing with this diagnosis.   Since you have given us some information I would also like to comment.  Your FIGO 1A is stage.   And since your hysterectomy was not a staging operation , but a simple hysterectomy, it may be that you are Grade 1.   Staging means they remove the uterus tubes, ovaries, and some lymph nodes, even put saline in the abdomen and wash and collect the saline to look for suspricious cells sometimes.   If you are grade 1 they may not do that, but just be aware that  your oncologist may want to  pursue a more definitive diagnosis.  There are 3 grades of endometrial cancer, 1 being the least agreessive which is good.