endometrial cancer

MarieA
MarieA Member Posts: 18
in Uterine/Endometrial Cancer #1
I was just diagnosed with endometrial cancer and am anxious about what I should expect. I know I need a total hysterectomy, but how do they determine how far your cancer has progressed? Does a grade 1 mean most likely you will be stage 1? The doctor is not doing surgery for another five weeks, should I be concerned with the cancer progressing. I have lost four family members to cancer and today I have been in my first panic mode. My family and friends are wonderful, but I just can't speak openly to them about how I am feeling.

Comments

  • Aderyn
    Aderyn Member Posts: 18
    #2
    I understand how you feel
    I was just diagnosed about a week ago. I'm seeing the chief of the division of gynecologic oncology (at least for now) at a teaching hospital, and I panicked when he scheduled my hysterectomy for three weeks in the future. However, he reassured me repeatedly that it would not make a difference, and said he routinely schedules three or four weeks out. The important thing is that you trust your doctor and oncology team (not blind trust, of course). Grade 1 does not necessarily mean stage 1, but it's definitely what you want to hear at this point!

    I was calm and cool for about two days, then panic mode hit me, too. Someone on this list suggested reading "Getting Well Again," which has a very positive outlook on participating in your own healing. It's been very helpful in keeping the panic at bay. It's available for Kindle, if you happen to have one.

    My family and friends are great and trying hard to be supportive, but in many ways they just don't get it.
  • MarieA
    MarieA Member Posts: 18
    #3
    Aderyn said:

    I understand how you feel
    I was just diagnosed about a week ago. I'm seeing the chief of the division of gynecologic oncology (at least for now) at a teaching hospital, and I panicked when he scheduled my hysterectomy for three weeks in the future. However, he reassured me repeatedly that it would not make a difference, and said he routinely schedules three or four weeks out. The important thing is that you trust your doctor and oncology team (not blind trust, of course). Grade 1 does not necessarily mean stage 1, but it's definitely what you want to hear at this point!

    I was calm and cool for about two days, then panic mode hit me, too. Someone on this list suggested reading "Getting Well Again," which has a very positive outlook on participating in your own healing. It's been very helpful in keeping the panic at bay. It's available for Kindle, if you happen to have one.

    My family and friends are great and trying hard to be supportive, but in many ways they just don't get it.

    thanks
    Your post calmed me down, thank you! I was fine until I scheduled surgery. I also read some posts on different findings other than "fine" after the pathology report. I guess you just trust in God and keep going forward. I
    I will get "Getting Well Again", however, a non-fiction suspense might get my mind off things.
    Hope all goes well with you!
    My family is very supportive but I tend to keep a lot inside.
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #4
    MarieA said:

    thanks
    Your post calmed me down, thank you! I was fine until I scheduled surgery. I also read some posts on different findings other than "fine" after the pathology report. I guess you just trust in God and keep going forward. I
    I will get "Getting Well Again", however, a non-fiction suspense might get my mind off things.
    Hope all goes well with you!
    My family is very supportive but I tend to keep a lot inside.

    Marie
    You are in great company here :0

    Waiting for the surgery made me crazy because it made me feel like I was NOT doing anything about the cancer....BUT they know what they are doing.....

    Take the down time to get ahead of your life schedule...do some research and gear yourself for a worthy battle ahead.

    Try to do something fun and something pampering for you!

    Laurie
  • ediegram
    ediegram Member Posts: 27
    #5
    Breathe...
    Hello There,
    Having just recently been with my Mom when she was diagnosed I know how scary this is for you. Any sort of cancer is scary, but type 1 is very treatable. My Mom had type 2 which is more aggressive. The hard part is waiting for the surgery and the pathology report. It seems to take forever. Until then, you really just have no idea. Hang in there and keep us posted. My mom is 76 and had a full hysterectomy, washings, and lymph node removals. All were clear, but because type 2 is so very aggressive she had 6 chemo treatments. I hear the type 1 is not as invasive.
  • Aderyn
    Aderyn Member Posts: 18
    #6
    MarieA said:

    thanks
    Your post calmed me down, thank you! I was fine until I scheduled surgery. I also read some posts on different findings other than "fine" after the pathology report. I guess you just trust in God and keep going forward. I
    I will get "Getting Well Again", however, a non-fiction suspense might get my mind off things.
    Hope all goes well with you!
    My family is very supportive but I tend to keep a lot inside.

    Be careful what you read
    Everyone shares a lot here, making it a wonderful site. But you have to remember that many people need to talk about outcomes that can make you even more frightened. Right now you don't need to hear how bad it can be -- you need to hear how good it can be. I just looked again at the booklet my gyn/onc gave me, in which he wrote that the cure rate for grade 1, even with some spreading, is 90-98% with surgery alone. We might not beat the odds, but those are darn good odds to have! I'd be buying lottery tickets all day long if I could get a 90% chance of having a winner, and that's what you've got right now :)
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    ediegram said:

    Breathe...
    Hello There,
    Having just recently been with my Mom when she was diagnosed I know how scary this is for you. Any sort of cancer is scary, but type 1 is very treatable. My Mom had type 2 which is more aggressive. The hard part is waiting for the surgery and the pathology report. It seems to take forever. Until then, you really just have no idea. Hang in there and keep us posted. My mom is 76 and had a full hysterectomy, washings, and lymph node removals. All were clear, but because type 2 is so very aggressive she had 6 chemo treatments. I hear the type 1 is not as invasive.

    Waiting is the worst
    and unfortuantely, you won't know the final stage and grade of your cancer until after surgery and staging. Grade 1 is hands down the lowest grade and is typically cured by surgery alone if it is confined to the uterus (Stage 1). Grade 1 doesn't necessarily mean you'll be stage 1, but because it's the slowest growing and most like normal cells, I think the chances of it not being a higher stage are good. Both the "official" stage and grade cannot be determined until after your surgery, tho.

    So here's a good story - mine. My pre-surgery biopsy diagnosis was complex atypical hyperplasia with areas suspicious for adenocarcinoma. My post-sugery pathology was Stage 1 (old Stage 1b), Grade 1 endometriod adenocarcinoma. Lymph nodes, ovaries, fallopian tubes and washings were all negative. I did not have to have chemotherapy nor radiation. I have follow up exams and Pap smears every 4 months for 2 years, then I think annually. It is not expected to recur, but it was cancer so it's taken seriously, but I have no intention of surprising anyone with a recurrence. I believe it's gone and ain't coming back.

    Good luck on your surgery. Please don't be too concerned about the wait. I did not have my hysterectomy until 2 1/2 months after diagnosis because I had to have another surgery (breast cancer) and recovery first. My gyn oncologist was not at all concerned about the wait (or so he said). I hope you're a candidate for a DaVinci robotic assisted hysterectomy.

    Suzanne
  • aboutmymom
    aboutmymom Member Posts: 4 Member
    #8
    Uterine Cancer
    My mom as high grade uterine cancer recently diagnosed and will have her robotic hysterectomy tomorrow with chemo to follow. We are hopeful that all goes well with the surgery and staging. I am very proud of her, she is 63 and is being very brave. This board has helped me to have hope and I will be introducing her to it after she recovers from surgery.

    Thank you all for your comments, may God continue to Bless and Keep you.
  • MarieA
    MarieA Member Posts: 18
    #9
    TiggersDoBounce said:

    Marie
    You are in great company here :0

    Waiting for the surgery made me crazy because it made me feel like I was NOT doing anything about the cancer....BUT they know what they are doing.....

    Take the down time to get ahead of your life schedule...do some research and gear yourself for a worthy battle ahead.

    Try to do something fun and something pampering for you!

    Laurie

    Thanks to TiggersDoBounce and Everyone Else!
    I read all the posts in response to my three day melt down. They really made a huge difference. I am blessed with the grade 1 diagnosis, and hoping that everything will be fine. My family history is history, and hopefully I will not be part of that percentage. All of you show such courage. I am so grateful for each and every reply.Thanks!
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #10
    Newly diagnosed-
    I remember that being newly diagnosed I was very anxious until I had a surgery date. I think it took a 4 days to hear back from doctor's office and then I wanted second opinion so it was about 3 weeks before I had surgery. I felt lost until there was a plan...meaning who my surgeon would be, when I would have surgery and what type (open or laproscopic) and how long before I got my port and started chemo. I wish that I had found this site before my surgery but didn't. No one knows what we are cancer survivors go through emotionally or physically. It is the biggest fight of our lives. Try to build up your immune system and rest and take care of yourself. Peace and strength be with you...
    Lori
  • Sunny777
    Sunny777 Member Posts: 7 Member
    #11
    MarieA said:

    Thanks to TiggersDoBounce and Everyone Else!
    I read all the posts in response to my three day melt down. They really made a huge difference. I am blessed with the grade 1 diagnosis, and hoping that everything will be fine. My family history is history, and hopefully I will not be part of that percentage. All of you show such courage. I am so grateful for each and every reply.Thanks!

    Diagnosed in November 2010
    I remember when I melted down after the diagnosis. Just some encouragement, mine was grade 1. I had the surgery, and a couple of weeks ago I had a followup and I'm NED. I know it's not a long time, but my oncologist is positive that things are going well. I pray that you will also have good news. This is a great site, you will get a lot of support and information. I learned a lot of questions I needed to ask. You'll be in my thoughts.

    Sunny
  • MarieA
    MarieA Member Posts: 18
    #12
    Northwoodsgirl said:

    Newly diagnosed-
    I remember that being newly diagnosed I was very anxious until I had a surgery date. I think it took a 4 days to hear back from doctor's office and then I wanted second opinion so it was about 3 weeks before I had surgery. I felt lost until there was a plan...meaning who my surgeon would be, when I would have surgery and what type (open or laproscopic) and how long before I got my port and started chemo. I wish that I had found this site before my surgery but didn't. No one knows what we are cancer survivors go through emotionally or physically. It is the biggest fight of our lives. Try to build up your immune system and rest and take care of yourself. Peace and strength be with you...
    Lori

    My pre-op is in one week, my
    My pre-op is in one week, my surgery is in two. I feel wonderful, but every pain is a worry. I am just so blessed! I think of all the horrific things in our world and then I think of how lucky I am.
    My family thinks I should not read posts that might upset me, and have me worrying about what might be instead of focusing on what a great chance I have that everything will be fine once the hysterectomy is over. However, I have lost two brothers and a sister to this horrible disease. I want to know the what ifs, I want to be prepared, and most of all I want to be inspired by all of you who display such bravery!
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #13
    MarieA said:

    My pre-op is in one week, my
    My pre-op is in one week, my surgery is in two. I feel wonderful, but every pain is a worry. I am just so blessed! I think of all the horrific things in our world and then I think of how lucky I am.
    My family thinks I should not read posts that might upset me, and have me worrying about what might be instead of focusing on what a great chance I have that everything will be fine once the hysterectomy is over. However, I have lost two brothers and a sister to this horrible disease. I want to know the what ifs, I want to be prepared, and most of all I want to be inspired by all of you who display such bravery!

    Marie/Pre-Op
    Great news that your pre-op is soon arriving...you will be soon getting one step down and onto the healing and treatments.

    Keep us posted on your progress!

    Laurie
  • LFoohey
    LFoohey Member Posts: 2
    #14
    Endometrial Cancer
    I was bleeding for 4 months before my surgery in December of last year on the 22nd. I had one biopsy which they said was pre-cancerous in October. Then they did a cleaning out of the uterus called a d and c after thanksgiving break which hurt me more than the first biopsy in October. I then was diagnoses with grade 2 after the d and c last December. They said it grew slowly compared to other cancers. Do you have stomach pain? I did it felt like an upset stomach as the weeks progressed to the surgery December 22, 2010. Don't give up get lots of people praying for you it helped me a great deal. I then found verses to support my prayer and it worked. January I was cancer free they said it was grade a which I have yet to figure out what that means. I had robotic surgery and it took about 5 months to feel back to normal physically. My legs hurt a long time and my back had a lot of pain. I have never had any back pain. It was from the lyphm system that they took out to biopsy for any cancer. It came back cancer free. They packaged up everything before it was taken out to prevent it from spreading. It costed the same as a regular hysterectomy. Thank God for answers to prayer.
  • LFoohey
    LFoohey Member Posts: 2
    #15
    Endometrial Cancer
    I was bleeding for 4 months before my surgery in December of last year on the 22nd. I had one biopsy which they said was pre-cancerous in October. Then they did a cleaning out of the uterus called a d and c after thanksgiving break which hurt me more than the first biopsy in October. I then was diagnoses with grade 2 after the d and c last December. They said it grew slowly compared to other cancers. Do you have stomach pain? I did it felt like an upset stomach as the weeks progressed to the surgery December 22, 2010. Don't give up get lots of people praying for you it helped me a great deal. I then found verses to support my prayer and it worked. January I was cancer free they said it was grade a which I have yet to figure out what that means. I had robotic surgery and it took about 5 months to feel back to normal physically. My legs hurt a long time and my back had a lot of pain. I have never had any back pain. It was from the lyphm system that they took out to biopsy for any cancer. It came back cancer free. They packaged up everything before it was taken out to prevent it from spreading. It costed the same as a regular hysterectomy. Thank God for answers to prayer.

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