Complex Hyperplasia with Atypia/**New Diagnosis Post Op - Endometrial Adenocarcinoma Stage 1-A

Heatherlynn707
Heatherlynn707 Member Posts: 20

Hello All!  I am obviously new here!  Hoping that all of you are well in spirit and fighting with all of your might!!  I never thought the day would come that I would be worried about cancer!  I have been having extremely  heavy periods and going through all signs of perimenopause - sleeplessness, weight gain in my belly; despite making good food choices.  For the past two years, I would only have a cycle for about six months and then hibernate the other six months.  I thought... no big deal until May of this year......I have been bleeding non-stop since May!  The volume varies from heavy to light spotting to dark with odor.  Sorry....so gross!!  Long story short...my PCP (primary care physician) referred me to get a vaginal ultrasound and sent me to an OB/GYN.  Ultrasound came back normal.  Pap came back normal. Since my endometrium measures 14MM, my gynocologist scheduled me for a EB.  I received the results of Complex Hyperplasia with Atypia :(   I have since been referred to an Oncologist GYN for a radical hysterectomy.  My appt is 10/7 and I have never been so terrified!!  I have read that about 45% of people with this diagnosis are re-diagnosed at the time of thier hysterectomy with having Endometrail Cancer.  The wait is excruciating and I am so very worried that my constant bleeding is a sure sign that it is cancer and the biopsy didn't capture the cancer cells.  What is your experience - curios to know.  I am also concerned with going into surgery induced menopause....perimenopause is bad enough.  Again, I will fight like hell!  Thanks for your time and your thoughts!  Sorry so graphic but I want others who may be experiencing the same to know they are not alone.  

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Comments

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    D&C

    Why didn‘t they do a D& C? That would give you a little more info. In my opinion endometrial biopsies are worthless. Rarely get enough tissue to tell you anything. 

  • Forherself
    Forherself Member Posts: 961 Member
    Hi Heatherlynn707

    Welcome.  I'm glad you found this site because we do understand how you are feeling.  It is scary.  And we can help.  I read about complex hyperplasia with atypia.  It said about 30% of cases have a concurrent carcinoma.   That means 70% don't.   It's hard to see that with the emotions your are feeling.  So your chances are higher that you don't.  And it sounds like it is a precursor to endometrioid cancer, which is the better carcinoma type.  About 80% of endometrioid cancer is found at 1A stage.  And 1A endometrioid cancer does not usually have any treatment.  

    I am so happy to see you have been sent to a gyneoncologist who is aggressively treating your condition.   Try and take a breath and wait for your hysterectomy results.  Your chances are good. And I know its so hard to do.  Feel free to express your emotions here.  I found it very hard to talk to friends and family.  They mean well but do not understand, unless they have had experience with this.   Many other women will respond.   And please keep us up to date on your treatment and outcome.   You can read my story by clicking on my name and read the blog.  

     

  • Kathy G.
    Kathy G. Member Posts: 244 Member
    Hi Heather!

    Hi Heather!

    The waiting is the worst part of possibly...or having this disease.

    I didn't come into this group until after my office biopsy confirmed I had uterine cancer. I learned later a D&C would have been much more accurate & informative.

    That is why I love this site...the info is unbelievable!

    I was referred to my gyn-onc based on biopsy results. He said it looked early stage & it was graded a 1...slow growing. However, only surgery will accurately tell your stage & grade...if you have cancer!

    I lucked out with stage 1/grade 1 garden variety cancer. I only needed the hysterectomy. I was already in menopause so no problems there! I can say menopause was a piece of cake after all that heavy & irregular perimenopausal mess.

    Hang in there & visit often for support & guidance.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Heather, first, try to take a

    Heather, first, try to take a breath.  You found a good place and you are working with a gynecologic oncologist - exactly what you want.  First - beware or Dr. Google.  Stats online are OLD and I can say what I saw when I first started coming here to what is being done today are completely different - which is good.

    Try not to get too far ahead of yourself here, take it a step at a time and figure out what you are dealing with.  We are here to help you through it with answers to all your questions.

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Waiting

    HeatherLynn707, Welcome to this forum. Glad you found us early in your journey. It is normal to worry about the possibility of cancer considering your symptoms.

    Try to go into surgery with the expectation that you don’t have cancer. Easier said than done that is for sure!

    I had light bleeding for 6 months and had normal ultrasound but biopsy showed endometrial cancer.

    The waiting to be diagnosed is excruciating. Most likely you won’t have cancer. If it turns out you do have cancer there are many women on this board who will offer kind and educated support. Remember you are not alone and there are many of us who have braved the disease before you and will stand by you to help ease the fear of the unknown. Try to stay focused on the “now” which is all any of us have. Please post again so we know how your surgery goes and your results. I will keep you in my prayers dear one...

    Lori

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    edited September 2019 #7

    D&C

    Why didn‘t they do a D& C? That would give you a little more info. In my opinion endometrial biopsies are worthless. Rarely get enough tissue to tell you anything. 

    I did ask if further

    I did ask if further diagnostic tests such as d&c might be performed to get a larger tissue sample but my gyn indicated that they wouldn’t put me through an unecessary procedure....that being said, when I go to my onc gyn, I plan on askinG that question to see if that would be possible.  Thanks for mentioning that and I have added to my list of questions!!

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    edited September 2019 #8

    Hi Heatherlynn707

    Welcome.  I'm glad you found this site because we do understand how you are feeling.  It is scary.  And we can help.  I read about complex hyperplasia with atypia.  It said about 30% of cases have a concurrent carcinoma.   That means 70% don't.   It's hard to see that with the emotions your are feeling.  So your chances are higher that you don't.  And it sounds like it is a precursor to endometrioid cancer, which is the better carcinoma type.  About 80% of endometrioid cancer is found at 1A stage.  And 1A endometrioid cancer does not usually have any treatment.  

    I am so happy to see you have been sent to a gyneoncologist who is aggressively treating your condition.   Try and take a breath and wait for your hysterectomy results.  Your chances are good. And I know its so hard to do.  Feel free to express your emotions here.  I found it very hard to talk to friends and family.  They mean well but do not understand, unless they have had experience with this.   Many other women will respond.   And please keep us up to date on your treatment and outcome.   You can read my story by clicking on my name and read the blog.  

     

    Emotions suck!!  I am full of

    Emotions suck!!  I am full of them!  Thank you for your post and I am also glad for the aggressive plan of action.  I am not happy about surgery but the alternative could be worse! :)  I am hopefull that my onc gyn will perform the least invasive and he is considered to be the best in town.  I will know more at my consultation appointment with him in a couple of weeks......until then I plan to stay busy and stay off the internet (LOL!).  It seems that everyone has a different opinion on what I should do.  My accupuncturist does not believe in Western Medicine at all.....I totally respect her and her practice but I am not willing to take the risk! 

    Thank you for your words of wisdom and remider of the 70% that do not get diagnosed with cancer!  Fight on!

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    Kathy G. said:

    Hi Heather!

    Hi Heather!

    The waiting is the worst part of possibly...or having this disease.

    I didn't come into this group until after my office biopsy confirmed I had uterine cancer. I learned later a D&C would have been much more accurate & informative.

    That is why I love this site...the info is unbelievable!

    I was referred to my gyn-onc based on biopsy results. He said it looked early stage & it was graded a 1...slow growing. However, only surgery will accurately tell your stage & grade...if you have cancer!

    I lucked out with stage 1/grade 1 garden variety cancer. I only needed the hysterectomy. I was already in menopause so no problems there! I can say menopause was a piece of cake after all that heavy & irregular perimenopausal mess.

    Hang in there & visit often for support & guidance.

    Waiting......ugh!

    I have read so much on biopsy and the lack of information they provide....not enough tissue sample for a clear diagnosis.  I plan on asking my onc gyn at my consult if I were better suited to have a D & C to see if cancer is present although if I have pre-cancer, it seems that a hysterectomy will be needed at some point and I figure that I might as well have the surgery while I am younger (46) and better able to heal.  My current plan of action is to prepare my body for the blow that is to come......I am working with my acupunturist to prepare.

    Glad to hear that you are on the mend and no further treatment was necessary!  Fight on and thank you for post! 

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20

    Heather, first, try to take a

    Heather, first, try to take a breath.  You found a good place and you are working with a gynecologic oncologist - exactly what you want.  First - beware or Dr. Google.  Stats online are OLD and I can say what I saw when I first started coming here to what is being done today are completely different - which is good.

    Try not to get too far ahead of yourself here, take it a step at a time and figure out what you are dealing with.  We are here to help you through it with answers to all your questions.

    Just Breathe!!

    I love your picture!!  I agree NoTimeForCancer is absolutely right!  I have a rich full life and I really do not have time for this!  That being said, I will heed your warning and not try to obtain my MD via google!  So hard to do!  I think I keep looking for the magic answer that this isn't real!  

    Thank you for your post!  I appreaciate it!  Fight On!!!

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20

    Waiting

    HeatherLynn707, Welcome to this forum. Glad you found us early in your journey. It is normal to worry about the possibility of cancer considering your symptoms.

    Try to go into surgery with the expectation that you don’t have cancer. Easier said than done that is for sure!

    I had light bleeding for 6 months and had normal ultrasound but biopsy showed endometrial cancer.

    The waiting to be diagnosed is excruciating. Most likely you won’t have cancer. If it turns out you do have cancer there are many women on this board who will offer kind and educated support. Remember you are not alone and there are many of us who have braved the disease before you and will stand by you to help ease the fear of the unknown. Try to stay focused on the “now” which is all any of us have. Please post again so we know how your surgery goes and your results. I will keep you in my prayers dear one...

    Lori

    Not Alone on this Journey!

    Thank you Lori!  This site is amazing and rich with information!  Staying focused to prepare my body for the big day!  Constantly in the back of my head and everything I read, I end up feeling......psychosomatic much??  LOL!

    I have my consult on 10/7 and will post my journey as I go!  Thank you for being here to help us newbies!  So appreciative!

     

    Heather

  • Forherself
    Forherself Member Posts: 961 Member
    This is copied from Cancer Care Alliance.

    Precancer—Complex Hyperplasia with Atypia

    Many women who have symptoms of endometrial cancer (vaginal bleeding after menopause or abnormal menstrual bleeding) may have a biopsy that shows precancerous changes of the endometrium, called complex hyperplasia with atypia. Risk is high that 25 to 50 percent of these women will go on to develop endometrial cancer. 

    To reduce the risk, doctors usually advise women with this condition to have a hysterectomy (surgery to remove the uterus) if they are past childbearing years or do not intend to become pregnant. Many gynecologists refer these women to a gynecologic oncologist for their surgery because of the chance of finding true cancer at the time of the hysterectomy.

    Sounds to me like the hysterectomy is done to prevent you from progressing on to cancer.    You are getting good treatment.

  • Fridays Child
    Fridays Child Member Posts: 277 Member
    LisaPizza said:

    A question to check with your

    A question to check with your gyn onc is whether he/she actually recommends a radical hysterectomy, or whether that is maybe a misunderstanding. The terms can be confusing to the uninitiated. A total hysterectomy means the cervix is included. A radical hysterectomy removes the uterus/cervix, but also the parametrial tissue (tissues around the uterus), and has more complications or harder recovery ... for example, many go home woth a temporary bladder catheter. Fortunately, normally for endometrial cancer we get a total hysterectomy, whereas the radical hysterectomy is used for cervical cancer. I guess it comes down to differences in the way they grow and spread.

     

    Removal of the ovaries is not actually part of a hysterectomy; it's named as a separate procedure that may or may not be done - oophorectomy. These days that's generally a salpingo-oophorectomy (salpingl means removing the tubes and not just the ovaries), because it looks like ovarian cancer actually starts there. So you have to ask to be sure exactly what is beong removed or not, and to what extent. Removing the ovaries is another area with debate, and there is evidence for not always removing them.

     

    Same with lymph nodes. There's not a consensus on removing lymph nodes. They often will not sample any (assuming they look normal) if the introperative pathology doesn't show any cancer. If it does, they weigh things like grade and depth of invasion to determine how aggressive to be. Some docs take only a few (I only had 5), some take dozens. It's  balance between finding any spread, and causing possible lymphedema, so there's not one right answer. The trend now is toward sentinel lymph node biopsies.

     

    But again, you won't know what's planned if you don't even know what to ask. And it may all be mute because chances are you don't have cancer ... but when they find out, you're under anesthesia and it's too late to take part in the decision-making or at least be prepared for the possibilities. You'll see all these types of surgery on your consent form. as "possible", just in case, but that shouldn't be the first time you hear about it, and you shouldn't have to decide without time to understand.

     

    Some docs explain all this without prompting, and some just make their judgment call and only answer the questions you ask.

    Very thorough explanation!

    With regard to the lymph nodes, individuals vary widely in how many lymph nodes they actually have in different parts of the body.  One person might have many more than another, so they might have more removed simply because there are more there to look suspicious or not.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    A question to check with your

    A question to check with your gyn onc is whether he/she actually recommends a radical hysterectomy, or whether that is maybe a misunderstanding. The terms can be confusing to the uninitiated. A total hysterectomy means the cervix is included. A radical hysterectomy removes the uterus/cervix, but also the parametrial tissue (tissues around the uterus), and has more complications or harder recovery ... for example, many go home woth a temporary bladder catheter. Fortunately, normally for endometrial cancer we get a total hysterectomy, whereas the radical hysterectomy is used for cervical cancer. I guess it comes down to differences in the way they grow and spread.

     

    Removal of the ovaries is not actually part of a hysterectomy; it's named as a separate procedure that may or may not be done - oophorectomy. These days that's generally a salpingo-oophorectomy (salpingl means removing the tubes and not just the ovaries), because it looks like ovarian cancer actually starts there. So you have to ask to be sure exactly what is beong removed or not, and to what extent. Removing the ovaries is another area with debate, and there is evidence for not always removing them.

     

    Same with lymph nodes. There's not a consensus on removing lymph nodes. They often will not sample any (assuming they look normal) if the introperative pathology doesn't show any cancer. If it does, they weigh things like grade and depth of invasion to determine how aggressive to be. Some docs take only a few (I only had 5), some take dozens. It's  balance between finding any spread, and causing possible lymphedema, so there's not one right answer. The trend now is toward sentinel lymph node biopsies.

     

    But again, you won't know what's planned if you don't even know what to ask. And it may all be mute because chances are you don't have cancer ... but when they find out, you're under anesthesia and it's too late to take part in the decision-making or at least be prepared for the possibilities. You'll see all these types of surgery on your consent form. as "possible", just in case, but that shouldn't be the first time you hear about it, and you shouldn't have to decide without time to understand.

     

    Some docs explain all this without prompting, and some just make their judgment call and only answer the questions you ask.

  • Primavera
    Primavera Member Posts: 231 Member
    LisaPizza said:

    A question to check with your

    A question to check with your gyn onc is whether he/she actually recommends a radical hysterectomy, or whether that is maybe a misunderstanding. The terms can be confusing to the uninitiated. A total hysterectomy means the cervix is included. A radical hysterectomy removes the uterus/cervix, but also the parametrial tissue (tissues around the uterus), and has more complications or harder recovery ... for example, many go home woth a temporary bladder catheter. Fortunately, normally for endometrial cancer we get a total hysterectomy, whereas the radical hysterectomy is used for cervical cancer. I guess it comes down to differences in the way they grow and spread.

     

    Removal of the ovaries is not actually part of a hysterectomy; it's named as a separate procedure that may or may not be done - oophorectomy. These days that's generally a salpingo-oophorectomy (salpingl means removing the tubes and not just the ovaries), because it looks like ovarian cancer actually starts there. So you have to ask to be sure exactly what is beong removed or not, and to what extent. Removing the ovaries is another area with debate, and there is evidence for not always removing them.

     

    Same with lymph nodes. There's not a consensus on removing lymph nodes. They often will not sample any (assuming they look normal) if the introperative pathology doesn't show any cancer. If it does, they weigh things like grade and depth of invasion to determine how aggressive to be. Some docs take only a few (I only had 5), some take dozens. It's  balance between finding any spread, and causing possible lymphedema, so there's not one right answer. The trend now is toward sentinel lymph node biopsies.

     

    But again, you won't know what's planned if you don't even know what to ask. And it may all be mute because chances are you don't have cancer ... but when they find out, you're under anesthesia and it's too late to take part in the decision-making or at least be prepared for the possibilities. You'll see all these types of surgery on your consent form. as "possible", just in case, but that shouldn't be the first time you hear about it, and you shouldn't have to decide without time to understand.

     

    Some docs explain all this without prompting, and some just make their judgment call and only answer the questions you ask.

    Radical vs Total Hysterectomy

    I was wondering, too, why a "radical hysterectomy" has been advised when there wasn't even a D&C performed yet? 

  • MoeKay
    MoeKay Member Posts: 476 Member
    Total vs. Radical Hysterectomy

    I had a radical hysterectomy for my endometrial cancer, but my gyn-onc didn't make the decision on which surgical procedure I would be having until I was on the operating table and he was able to assess my situation.  My tumor arose in the lower uterine segment, close to the cervix, so my surgeon stated in his operative report:  "the nature of the tumor was such that it was decided to go ahead and perform this wide excision (Type II radical hysterectomy)."  When I signed my consent forms for surgery, both procedures were listed in the document, to allow for the most medically appropriate decision to be made at the time of surgery.  Of course, my surgery was 20 years ago, so perhaps things might be different today. 

    It sounds like Heatherlynn has not yet had her consult with the gyn-onc, so I suspect he or she will talk to her about the various surgical options at her upcoming appointment.

    Heatherlynn, best of luck to you!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    edited September 2019 #17
    MoeKay said:

    Total vs. Radical Hysterectomy

    I had a radical hysterectomy for my endometrial cancer, but my gyn-onc didn't make the decision on which surgical procedure I would be having until I was on the operating table and he was able to assess my situation.  My tumor arose in the lower uterine segment, close to the cervix, so my surgeon stated in his operative report:  "the nature of the tumor was such that it was decided to go ahead and perform this wide excision (Type II radical hysterectomy)."  When I signed my consent forms for surgery, both procedures were listed in the document, to allow for the most medically appropriate decision to be made at the time of surgery.  Of course, my surgery was 20 years ago, so perhaps things might be different today. 

    It sounds like Heatherlynn has not yet had her consult with the gyn-onc, so I suspect he or she will talk to her about the various surgical options at her upcoming appointment.

    Heatherlynn, best of luck to you!

    MoeKay, my surgery was seven

    MoeKay, my surgery was seven years ago and I signed for the option for the open incision.  My gyn onc said, yes, the plan is the DaVinci, but if he got in there and saw something, he wanted to option for full abdominal surgery.  I knew that and I told my friend the first thing I wanted to know when I woke up was what TYPE I ended up having.  

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    LisaPizza said:

    A question to check with your

    A question to check with your gyn onc is whether he/she actually recommends a radical hysterectomy, or whether that is maybe a misunderstanding. The terms can be confusing to the uninitiated. A total hysterectomy means the cervix is included. A radical hysterectomy removes the uterus/cervix, but also the parametrial tissue (tissues around the uterus), and has more complications or harder recovery ... for example, many go home woth a temporary bladder catheter. Fortunately, normally for endometrial cancer we get a total hysterectomy, whereas the radical hysterectomy is used for cervical cancer. I guess it comes down to differences in the way they grow and spread.

     

    Removal of the ovaries is not actually part of a hysterectomy; it's named as a separate procedure that may or may not be done - oophorectomy. These days that's generally a salpingo-oophorectomy (salpingl means removing the tubes and not just the ovaries), because it looks like ovarian cancer actually starts there. So you have to ask to be sure exactly what is beong removed or not, and to what extent. Removing the ovaries is another area with debate, and there is evidence for not always removing them.

     

    Same with lymph nodes. There's not a consensus on removing lymph nodes. They often will not sample any (assuming they look normal) if the introperative pathology doesn't show any cancer. If it does, they weigh things like grade and depth of invasion to determine how aggressive to be. Some docs take only a few (I only had 5), some take dozens. It's  balance between finding any spread, and causing possible lymphedema, so there's not one right answer. The trend now is toward sentinel lymph node biopsies.

     

    But again, you won't know what's planned if you don't even know what to ask. And it may all be mute because chances are you don't have cancer ... but when they find out, you're under anesthesia and it's too late to take part in the decision-making or at least be prepared for the possibilities. You'll see all these types of surgery on your consent form. as "possible", just in case, but that shouldn't be the first time you hear about it, and you shouldn't have to decide without time to understand.

     

    Some docs explain all this without prompting, and some just make their judgment call and only answer the questions you ask.

    A question to to check with your doctor

    Thanks so much for the clarifiction.....I have a list of questions for my doctor to ask during my consult.

    I have done so much research in the last few weeks and I have compiled a ton of information - probably too much!  LOL!

    I want to ensure I am prepared and the Doctor can make decisions while I am under rather than going through multiple procedures.

    I will know more and will update 10/7......I hate waiting!!

    :)

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    MoeKay said:

    Total vs. Radical Hysterectomy

    I had a radical hysterectomy for my endometrial cancer, but my gyn-onc didn't make the decision on which surgical procedure I would be having until I was on the operating table and he was able to assess my situation.  My tumor arose in the lower uterine segment, close to the cervix, so my surgeon stated in his operative report:  "the nature of the tumor was such that it was decided to go ahead and perform this wide excision (Type II radical hysterectomy)."  When I signed my consent forms for surgery, both procedures were listed in the document, to allow for the most medically appropriate decision to be made at the time of surgery.  Of course, my surgery was 20 years ago, so perhaps things might be different today. 

    It sounds like Heatherlynn has not yet had her consult with the gyn-onc, so I suspect he or she will talk to her about the various surgical options at her upcoming appointment.

    Heatherlynn, best of luck to you!

    Total vs. Radical Hysterectomy

    Consult is on 10/7......until then, I wait and compile what will be an incredibly long list of questions!

    There is really too much ifnormation and I am no new to this that all the differences in types of Hysterectomy differ from person to person......

    To be honest......totally overwhelmed!!

    Thank you for the support!

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    Primavera said:

    Radical vs Total Hysterectomy

    I was wondering, too, why a "radical hysterectomy" has been advised when there wasn't even a D&C performed yet? 

    Radical vs Total Hysterectomy

    There will not be a D & C performed.....

    My gyn indicated that they will be doing a clean sweep......so maybe I utilized the incorrect wording in my post.

    My consult with the onc gyn is on 10/7 - I have a long list of questions for him.....Trust me!!

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Miss Heather, is anyone going

    Miss Heather, is anyone going with you to the consult?  Someone good at notes so you can sit and pay attention and they can just be your scribe?  A second set of ears might be helpful with everything that will be discussed, and your questions you want to ask.