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Thread: New diagnosis of endometrial adenocarcinoma

  1. #1

    New diagnosis of endometrial adenocarcinoma

    I am new to this group and excited to have found it! I am hoping to get some more information from others with the same diagnosis. I am 55 years old and was still having periods through this March 2017. NO menopasue sympostoms, no hot flashes, modd swings etc. Then missed 2 months and then started bleeding heavily (always have had heavy ones) June 29th anddidnt stop until my D&C. I knew something was different. HAa an ultrasound which found that I needed a D&C, hysteroscopy, biopsy. My uterine lining was 28 mm and my great OB/GYN said it should be 2-10 mm. She felt I had a polyp but wouldnt know until the D&C. Had D&C 12 days ago and had my check up last Friday. I am so glad that she found the source of my bleeding--a polyp ( and that I healed great from the procedure. ) I was told at that appt I have endometrial adenocarcinoma in situ-very early and has most likely not invade the muscle of the uterus. Dr said I will NOT need chemo and that a full hysterectomy was in order. She didn't want me to wait more than 2 months. I have an appt in 9 days with a gyno oncologist to figure out the next step. I was very emotional when I found out and it took a couple days to get my head around the surgery, going into surgical menopause and losing my lady parts. I have always wanted to go through menopasue naturally. I am now on 10 mg of provera to decrease the growth of the endometrial lining and will be on this until surgery, I am VERY active, do not smoke/drink, eat a plant based diet and workout every day. I have never been on any meds or birth control, no other medical conditions, nor have I had any children (adopted I need to get my head around taking this med & being "still" for 6 weeks..YUCK! So not me! I was told I could walk...not running or pickleball but I will walk as much as I am allowed. I am VERY grateful for so many things! As emotional as I am feeling I do know that this is treatable and curable (well ,for now I do) and that I didn't do anything to cause this. I really wanted to know what I DID to cause this....my Dr said this type of cancer is due to hormone changes. I still wonder if I coud have prevented it. I will focus on getting even STRONGER emotionally and physiclaly and beeven more in tune with what I eat until surgery so I can be as strong as ever and bounce back quickly. Each day since finding out I feel more postiive. I have cleared my plate of a few obligations so I can focus on my health and stay as stress free as possible---which is fine with me so I can play more pickleball! I have a super supportive hubby and he will be with me every step ofthe way. Wow--so much to be thankful for. I would like to know what others have done who have been diagnosed with the same. My Dr said she believes it is stage 1 but we won't know until I see the oncologist and have surgery. So...here are my questions---is this diagnosis the same as uterine cancer? What, if any, difference is there between uterine and endometrial cancer? Why do I have to have EVERYTHING taken out--even cervix? (tubes, ovaries, uterus, cervix) IS it due to my age? Is there any chance I could keep at least 1 ovary?? (I asked DR and she said no) Is it 100% that I will go into full blown menopause after surgery or is there a chance I could enter it quietly and peacefully without anyone knowing? (lol...just kidding!) Has anyone been on provera 10mg for this? My Dr said it is well tolerated. In the days I have been on it I am fine. I feel GREAT after the D&C and have stopped bleeding. I know I will love not having heavy periods anymore, not being anemic, bleeding heavily with no notice etc. but I am still anxious about this type of surgery. She did indicate I would not be a candidate for vaginal hysterectomy due to the fact that my lymph nodes will be tested and may have to be removed. It will be done laproscopicallly or with the "robot" if I ma candidate?? Any info on anything I have posted would be great. Again--I am feeling very strong and positive and will NOT worry about WHAT IF's. I can only go with what has happened so far and when something new comes my way I will deal with it. I am so grateful for the gift of life...even moreso now than ever! Sorry this is so long and thanks to all for reading my story.

  2. #2
    Moderator Top User jorola's Avatar
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    Well Daisylover, well to the club that no one wants to join. But here is an awesome group of supportive people. They made all the difference for me when I joined.
    Good to see you so positive and and seeing the good and humor in things still.
    There are many discussions on what should be taken out - especially the cervix and ovaries and tubes these days. It is best to have a conversation with your dr about why they feel these should all come out.
    Mine hysterectomy was laparoscopic - out went the uterus, cervix and tubes. Kept both ovaries. For me it was due to very bad adenomyosis, fibroids and the start of endometriosis. Ended up with no cancer. Whew. I can offer a lot of stuff on that if you would like. Bottom line, it was not bad at all but ya listen to the dr's restrictions (don't be a dummy (like me!!!) and do more than you should because you will PAY!). Walking after surgery is very important but must be done in stages as you will be amazed at how tired you get. I know many women that walked too far forgetting that had to somehow get back.
    As for the the difference between uterine and endometrial cancer I think, and I am guess here so best ask your dr, is it depends where the endometriosis is located as it can be in various place in the abdomen. I am assuming based on what you have written yours in in /around your uterus.
    Wondering if you could have prevented it would just give you a headache. You can not change the past so in my opinion focus on what you can do for your recovery and your future.
    I cannot comment on hormone therapy as I kept my ovaries but I can tell you they "went to sleep" for a few weeks after surgery. Oi - my poor poor hubby. What a mess I was LOL. But I made it through and all seems to be fine now. I am hoping others that have had the therapy can jump in here and speak more to that.
    Again Welcome! Please keep us posted. Let us know when the surgery is and we can help pass on stories and some ideas that might help ok?
    Oh and what the heck is pickleball?? I am so curious!
    Jodie

    Um...what is pickleball? Now I am very curious!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  3. #3
    WOW! How awesome to open this forum and get such a caring repsonse from you, Jorola! You made my day! Just knowing there is a support group out there gives me peace of mind! As soon as I heard the news I thought----am I alone? I wonder how common this is? (of course I have asked my Dr tons of Q's and used the MYCHART to communicate with her, which I love!) As soon as I read: "this is an awesome group of supportive people" I knew this will be a place where I can cheer, cry, pray, vent etc! Thank you so much for sharing your story. I know there is still alot for me to learn and new things will come my way but the more prepared I am the better I will do---I just know it. Now..onto my my FAVORITE all time ADDICTION! No--not ice cream or good wine...PICKLEBALL! The fastest growing sport in the USA (in the world actually) and the most addictive (I say that in a good way) I play everyday or twice a day or I get in a BAD MOOD! Fortunately my husband is just as addicted as I am or else I would have to dump him (jk!) Please google it and watch some games on YouTube. Its easy to learn, anyone can play it and its not only an active sport but a social one. We have a whole new set of friends. We used to be beach bums for vacations but now all our vacations are pickleball ones! We have been playing about a year and now are doing tournaments. Its a court game---on the size of about a badmington court, can be played indoors or outdoors, uses a graphite or composite paddle and is a combo of tennis, ping pong, badminton and vball. Again---anyone can play! I betsomeoen on this forum plays everyday! I just know it! So--my dream now is to be told I can wait for surgery until after Oct 8th...then i will be so happy because I have about 5 tourneys between now and then! Is that too much to ask for Ms. Cancer?? ok--enough on pball---I could go on and on........Thx again Jorola!

  4. #4
    Experienced User
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    Hi Daisylover Where my circumstances are slightly different than yours, I can relate about timing of surgery. I had a surgery in April to remove adnexal mass on my right ovary. Pathology report came back to recommend full staging (full hysto + appendectomy). I received this news in May and was wondering about delaying until the Fall so I could enjoy my summer (albeit being wet). My final decision was to schedule surgery ASAP so that I could start enjoying my newly acquired retirement. I was informed that there can be some risks with performing laprascopic/robotic surgery when a mass exisrs due to potential spillage. I had a vertical incision from belly button down as the Dr noted items being removed/tested could not be done laprascopically. I am now waiting for the new PATH reports, but already planning my extra-curricular activities as soon as I am strong enough. In retrospect I am glad to have proceeded earlier rather than later as my research has indicated that this is the most effective means of controlling my issue.

    Wishing you all the best and admire your cheery disposition, please don'the lose it (refreshing).

  5. #5
    Thank you so much, Ingrid, for sharing your story. It helps me hearing others experiences and how they proceed once getting a diagnosis. I am still in limbo until my first gyno oncology appt this Thurs. I believe I will have so much more to share once I meet with the oncologist. I was hoping to hold off surgery until the first of Oct (due to pball tourneys!) BUT--the med I am on (10 mg provera) is making me NUTS and I may have to have surgery sooner. I am a totally different person on this med. I am anxious, crabby, unfocused, mad, sad...you name it I feel it. I felt like my head was going to explode with emotions on Sunday morning so I didn't take that pill Sun. By the afternoon I felt 100% normal and clear headed. It was such a relief to feel GOOD. Also, with the med I started bleeding and it became heavy. The bleeding has been super heavy even though I stopped the med for 2 days. I took it this morning because I know how important it is to be on it until surgery but the 2 days without it was great even though I have been bleeding. I am sick of bleeding for 2 months and so it seems easier now to get my head arounf this surgery knowing I won't have to deal with this horrible bleeding. Thanks again to everyone for sharing their journey. Off to the pball courts to forget & have fun! I am bound and determined to get through this with a positive attitude and a strong body!

  6. #6

    Surgery scheduled for 9/12/17

    I was diagnosed with endometrial adenocarcinoma in situ on 8/18/17. (D&C was 8/11) Saw gyno oncologist on 8/31. Two days of testing this week and surgery scheduled for 9/12/17. Each day I am feeling more and more positive about this surgery even though initially I wanted to hold off for a month. The bleeding didn't stop on provera and so the oncologist started me on megace 40mg 2 x a day. I am only taking it one time a day and the bleeding has stopped. I was NOT happy about being on this drug but it is only for 11 days prior to surgery. Thank goodness the bleeding has stopped! The only side effect from the drug is I get very tired early evening, loss of appetite, unfocused, moody, airhead but it is all tolerable.
    Although the oncologist believes it is in a very early stage and is grade 1 she can't be sure until after the surgery and the results are in. Right now I will take one hurdle at a time. Next up is getting great results from my bloodwork, x-rays and catscan this week.
    I am so fortunate to have found this early, to live in a country where I can get treated, have a supportive husband and family, a great Dr and tons of love from friends and family. How dare I complain about this when I KNOW in my heart I can fight this and I am determiend to bounce back better than ever! Any negative thought that comes in my head I immediatley erase it with what I am grateful for! Could be SO MUCH WORSE! One day at a time! Thanks to all of you on this forum for your shares.
    PS: I was asking for a sign last week before my Dr appt--a sign that would help me accept this surgery and get it done soon. (I wanted to hold off and play in tourneys!) I prayed about it for days and what do you know---I got my sign! I broke a bone in my foot from too much running and pickleball! Now, if thats not a sign I don't know what is! The recovery for my foot is the same as the surgery and it surely will ensure I DO NOT STEP FOOT on the court or run until I am all healed. At that point when the Dr said I would not be putting this surgery off I smiled--- and agreed whole heartedly! Go figure!!

  7. #7
    Moderator Top User jorola's Avatar
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    Well sorry to hear about the foot but yes a sign for you to stay put and get this surgery done! It will be here in no time. May a recommend you start preparing your recovery "nest"? Wherever you plan on spending most of your time after surgery. Make sure you have Kleenex, books, whatever your hobby stuff is, a little garbage can, whatever you think you may need so you are not getting up and down a thousand times. Yes you still need to keep moving! but this just helps manage it a bit and not also have to send family members running non stop either. Also , i know you are limited but family can help too with this, have them help do a good house cleaning. Nothing is worse then sitting there feeling yucky and then looking around going "crap i wish i had cleaned the house before hand." Pre-making little light meals easy to heat up are good too. You may not feel like eating when the rest of the family does nor feel like eating what they are eating. Although that should not last long either. Just some tips I thought may be helpful. Best of luck and let us know how you are doing when you feel up to it ok?
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  8. #8
    Thank you so much Jorola! You mentioned some things in your post that I hadn't thought of so I will definitely be preparing for my return home from the hospital. Im lucky becuase I can get around pretty well in this beautiful boot I am wearing. It's all the rage ya know and my friends want one! lol I really appreciate you taking the time to respond to my post and for giving me things to do this week to keep busy. It not only will make things easier next week but also keep my mind off the surgery this week! Looking forward to posting GOOD NEWS & RESULTS.

  9. #9
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Posts
    1,760
    Glad I could help. Just passing along helping info that was passed on to me once. LOL love your sense of humor. Keep it up girl!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  10. #10

    Home & Surgery complete :)

    I had a full hysterectomy (Davinci laproscopic) on Tues and I am now home. Wow! What a month! D&C Aug 11, diagnosed with endomentrial cancer Aug 18th and surgery done! All of my pre surgery tests came back great. My CAT 125 blood work was 18.6 and the range is best of under 35. Dr said my surgery went great, minimal blood loss and she did not see any visible signs of cancer. I am resting at home and waiting 8-10 days for the biopsy reports. Praying nothing is in my lymph nodes or uterine wall. So happy that it was caught early. She did biopsy the lymph nodes. I am feeling good. The only pain I have is from the gas they put in you during surgery. I havent needed to take pain meds--only ibuprofen. I like that I am not groggy and that my body is getting back to normal functions as opposed to slowing things down on pain meds. I am walking as much as I can with a broken bone in my foot. lol Did 20 laps around the hospital floor each day. I am feeling very positive and although I have had a few moments they haven't lasted long. I thank everyone on this forum for their nice messages. I will post when I get my resultss back. To anyone going through an upcoming surgery--I am here for you!

 

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