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

2

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  • Fridays Child
    Fridays Child Member Posts: 277 Member

    When my brother went to consult about the possibility of a bone marrow transplant (years ago), he took a small dictation recorder and the doctor agreed for him to record the discussion so he could listen again later.  I was with him and we both took notes, but he was glad to have the backup.  It's even easier now with phones that can do the recording for you, if the doctor is agreeable.

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20

    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.

    Oh yes....my husband and my

    Oh yes....my husband and my friend!!  I figure between the 3 of us, we’ll get it right!!  I imagine it going something like this....please take it out....they put in for the authorization...wait for the approval and schedul!!  Hopefully, it will be that quick!!!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Scheduling and timing

    HeatherLynn707, Seems like most gyn/oncologists are scheduled out about 2 weeks so don’t be surprised. You may want to contact “member services “ at your health insurance company and ask if the surgeon, hospital, anasthesiologist and even radiologist group are “in-network “ with your plan benefit package. Some of us incurred unexpected ”out -of-network “ costs because although the hospital and oncologist were “in-network” the radiology, anasthesiology, pathology groups practicing within the hospital were NOT “in-network “. I experienced  situation and paid thousands of dollars out of pocket. There has been some new legislation introduced at the federal government level to make this scenario transparent to us as health care consumers. Your Oncologist won’t know specifically who the individual anasthesiologist will be but they certainly know the name of the anasthesiology group who staff’s the oncology surgical cases.  The reason they can’t tell you a specific name is because the surgical schedule won’t be determined on the day you see your oncologist for your pre-op consult. I hope you are still managing OK through all you are going through. Keeping you in my prayers that you will not be diagnosed with cancer. 

    ((Hug))

    Lori

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20

    Scheduling and timing

    HeatherLynn707, Seems like most gyn/oncologists are scheduled out about 2 weeks so don’t be surprised. You may want to contact “member services “ at your health insurance company and ask if the surgeon, hospital, anasthesiologist and even radiologist group are “in-network “ with your plan benefit package. Some of us incurred unexpected ”out -of-network “ costs because although the hospital and oncologist were “in-network” the radiology, anasthesiology, pathology groups practicing within the hospital were NOT “in-network “. I experienced  situation and paid thousands of dollars out of pocket. There has been some new legislation introduced at the federal government level to make this scenario transparent to us as health care consumers. Your Oncologist won’t know specifically who the individual anasthesiologist will be but they certainly know the name of the anasthesiology group who staff’s the oncology surgical cases.  The reason they can’t tell you a specific name is because the surgical schedule won’t be determined on the day you see your oncologist for your pre-op consult. I hope you are still managing OK through all you are going through. Keeping you in my prayers that you will not be diagnosed with cancer. 

    ((Hug))

    Lori

    Thanks Lori for the great

    Thanks Lori for the great information!!  I will be sure to ask these at my appointment assuming we get straight into scheduling since I already know what I would like to do!  I also received word from a friend of mine who's a nurse indicated that I have the best doctor in town!!  She said he is amazing!!  Laughing

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Doctor well respected

    That’s so great that your RN friend has confidence in your Gyn/Onc surgeon. Nurses tend to know who the really good and not so good doctors are based on observation and experience. Typically their opinion is not just based on whom they ”like”. 

    Having confidence and good communication with one’s physician and their nurse practitioner will make your overall experience more positive. 

    Many of us on this forum are counting the days with you until your appointment.  Isn’t it strange how everyone else goes on with their daily routines and only those who are going through or have gone through a health crisis feel like all the clocks should stop or speed up to make the unknown diagnosis known. Any emotion or feelings you are having are “normal” as you approach Oct. 7.  Remember the women on this discussion board are here to support you and help you no matter what your diagnosis is. Keep strong! 

    ((Hug))

    Lori 

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    Quick Update

    Hello all!!  Met with the oncologist gynecologist today.....radical hysterectomy scheduled for 10/25.  Happy with my Dr. and my staff!  I did a ton of research and my Dr. indicated that I was an easy patient and honestly anticipated my questions!  Not too excited about the amount of bowel prep.....oh and....my surgery is set for 3:30pm :(.  I will starve!!  Oh well, I wanted the first available!!  Pathology will be performed during procedure and if cancer is found, he will go back in and take lymphnodes.  He Indicated that lymph nodes looked suspect, he will take them also for pathology.  He did indicate with my history and symptoms, finding cancer may be likely but he won't be sure until he is in there!  da'Vinchi approach with the option to go open abdomen if needed.  Will keep you all posted!  Thanks so much for all if you're support!!  Fight on!!

  • Armywife
    Armywife Member Posts: 451 Member

    Quick Update

    Hello all!!  Met with the oncologist gynecologist today.....radical hysterectomy scheduled for 10/25.  Happy with my Dr. and my staff!  I did a ton of research and my Dr. indicated that I was an easy patient and honestly anticipated my questions!  Not too excited about the amount of bowel prep.....oh and....my surgery is set for 3:30pm :(.  I will starve!!  Oh well, I wanted the first available!!  Pathology will be performed during procedure and if cancer is found, he will go back in and take lymphnodes.  He Indicated that lymph nodes looked suspect, he will take them also for pathology.  He did indicate with my history and symptoms, finding cancer may be likely but he won't be sure until he is in there!  da'Vinchi approach with the option to go open abdomen if needed.  Will keep you all posted!  Thanks so much for all if you're support!!  Fight on!!

    Onward!

    Ok, girl - sounds like you've got a good plan!  My surgery was done with DaVinci, and the recovery was much easier than I anticipated!  Blessings!

  • MugsBugs
    MugsBugs Member Posts: 111 Member

    Quick Update

    Hello all!!  Met with the oncologist gynecologist today.....radical hysterectomy scheduled for 10/25.  Happy with my Dr. and my staff!  I did a ton of research and my Dr. indicated that I was an easy patient and honestly anticipated my questions!  Not too excited about the amount of bowel prep.....oh and....my surgery is set for 3:30pm :(.  I will starve!!  Oh well, I wanted the first available!!  Pathology will be performed during procedure and if cancer is found, he will go back in and take lymphnodes.  He Indicated that lymph nodes looked suspect, he will take them also for pathology.  He did indicate with my history and symptoms, finding cancer may be likely but he won't be sure until he is in there!  da'Vinchi approach with the option to go open abdomen if needed.  Will keep you all posted!  Thanks so much for all if you're support!!  Fight on!!

    Good Luck

    Heather:

    Good luck with your journey!  The hysterectomy wasn't as bad as I anticipated.  The gals here provided me some very good advice on making the journey easier.  I am so glad they did because it made the surgery so much easier.

    1.  Buy GasX and take it to the hospital.  They blow you up with gas and it can be painful after surgery.

    2. Buy a Belly Band (I bought mine off of Amazon).  It provides support to you tummy after surgery and helps you feel more secure when walking.

    3. Take a pillow with you to the hospital to use as a brace on the ride home.  The home wasn't bad but the pillow helps brace your belly on the ride home.

    4. I wasn't going to take any pain meds, except for Tylenol.  They gave me Percoset.  I didn't want to take them because I had a beloved Aunt who was addicted to Oxy and overdosed.  After 16 hours at home I finally broke down and took one - it was wonderful and I slept like a baby.  I didn't need them anymore after 3 days.

    5.  Talking about pain meds - make sure you have Docalax on hand to get ahead of the constipation which is caused by the pain meds - you don't want that.

    6.  Listen to you doctor - no lifting for 6 weeks - which means no housework. 

    Statistically, if you do have cancer it is probably early and the hysterectomy will take care of it.  I was one of the lucky ones that I didn't require any more treatment (except follow-ups) after the hysterectomy.

     

    Good luck!

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    MugsBugs said:

    Good Luck

    Heather:

    Good luck with your journey!  The hysterectomy wasn't as bad as I anticipated.  The gals here provided me some very good advice on making the journey easier.  I am so glad they did because it made the surgery so much easier.

    1.  Buy GasX and take it to the hospital.  They blow you up with gas and it can be painful after surgery.

    2. Buy a Belly Band (I bought mine off of Amazon).  It provides support to you tummy after surgery and helps you feel more secure when walking.

    3. Take a pillow with you to the hospital to use as a brace on the ride home.  The home wasn't bad but the pillow helps brace your belly on the ride home.

    4. I wasn't going to take any pain meds, except for Tylenol.  They gave me Percoset.  I didn't want to take them because I had a beloved Aunt who was addicted to Oxy and overdosed.  After 16 hours at home I finally broke down and took one - it was wonderful and I slept like a baby.  I didn't need them anymore after 3 days.

    5.  Talking about pain meds - make sure you have Docalax on hand to get ahead of the constipation which is caused by the pain meds - you don't want that.

    6.  Listen to you doctor - no lifting for 6 weeks - which means no housework. 

    Statistically, if you do have cancer it is probably early and the hysterectomy will take care of it.  I was one of the lucky ones that I didn't require any more treatment (except follow-ups) after the hysterectomy.

     

    Good luck!

    Don't forget to walk as soon

    Don't forget to walk as soon as you can. It helps get everything moving!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    edited October 2019 #31
    A good plan

    Thanks for your update. It sounds like you have a plan and your doctor was able to answer questions and instill confidence. That’s so important. Keeping you in my thoughts and prayers for good outcome. Try to wear a comfy pair of yoga pants or something without a tight waistband. Even your bra should be extra comfy like a strech bra for after surgery because there will be swelling. Even consider wearing shoes that slip on so you don’t need to bend over to put them on. Also when they discharge you make sure you bring a couple of those blue nausea bags with you in the car.... just in case. They are handy once you are home too. Have clean sheets, pillowcases and pajamas to slip into once you get home. This is important for your comfort and for infection prevention. Yes, being nit able to eat or drink so late in day is not ideal but I’m with you in getting the surgery done as soon as possible. Take care and keep us posted . We are here for you HeatherLynn707! 

    Lori

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20

    A good plan

    Thanks for your update. It sounds like you have a plan and your doctor was able to answer questions and instill confidence. That’s so important. Keeping you in my thoughts and prayers for good outcome. Try to wear a comfy pair of yoga pants or something without a tight waistband. Even your bra should be extra comfy like a strech bra for after surgery because there will be swelling. Even consider wearing shoes that slip on so you don’t need to bend over to put them on. Also when they discharge you make sure you bring a couple of those blue nausea bags with you in the car.... just in case. They are handy once you are home too. Have clean sheets, pillowcases and pajamas to slip into once you get home. This is important for your comfort and for infection prevention. Yes, being nit able to eat or drink so late in day is not ideal but I’m with you in getting the surgery done as soon as possible. Take care and keep us posted . We are here for you HeatherLynn707! 

    Lori

    Thank you Lori!!  Appreciate

    Thank you Lori!!  Appreciate the support!

  • 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.

    Clean Sweep!

    LisaPizza!

    So my surgery is scheduled for 10/25.  My onc gyn indicated he will be removing uterus, cervex, tubes and ovaries.  They will perform intraoperative pathology while under and if cancer is present, they will remove lymphnodes.  He indicated that if he views any lymphnodes that appear to be suspect, he will remove regardles of pathology findings.  Thanks so much for your input, it was extremely helpful.

    Will keep you posted!!

    Fight on!!  

    --H

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    Heatherlynn, my experience of

    Heatherlynn, my experience of the surgery was that it was very easy (total laparascopic hysterectomy with sentinel nodes).  Recovery was easy, and I'm about a decade older than you.  Look at it this way: there's a good chance they won't find any cancer, and then you never have to worry about uterine or ovarian cancer again.  And if they DO find cancer, it will probably be a very early stage, not advanced, and it may be all the treatment you need.  It will all probably be fine.  Hardest part is probably gonna be waiting for the surgery and pathology results.

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    Quick Update

    Hello Ladies!!

    Received a phone call from my Dr. today.....great news!!  They had a cancellation and my surgery date was moved up to a week from tomorrow!  I received the first surgery of the day vs. a 3:30pm surgery time!!  I am excited and terrified all at the same time!  Thanks to all for your support!  So much gratitude!  I am hopeful that this will be the only treatment I need but if not, I know that I am not alone.  They will perform pathology intra operative with a full pathology to follow a couple of days later.  Keeping my fingers crossed and saying a bunch of prayers.  Fight on ladies!!  

    Embarassed - Heather

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    Hey, Heather

    delighted to learn your good news. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    That's good news for sure

    That's good news for sure Heather. And, having the first appointment is so much better. Please let us know how things  go!

    Love and Hugs,

    Cindi

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20

    That's good news for sure

    That's good news for sure Heather. And, having the first appointment is so much better. Please let us know how things  go!

    Love and Hugs,

    Cindi

    Thank you so much Cindi!  

    Thank you so much Cindi!  

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    ConnieSW said:

    Hey, Heather

    delighted to learn your good news. 

    It's getting close so I am

    It's getting close so I am happy!  I am nervous but I know that all will be well!

    Fight On!!

  • Heatherlynn707
    Heatherlynn707 Member Posts: 20
    Two Days Post Op

    Hello ladies! Just wanted to check in and let you know that I am now two days post op. They did end up taking both ovaries both fallopian tube's cervix and uterus and they did actually take nodes.  I am assuming that nodes were taken because the frozen section was positive. I know Have to wait for the final pathology for any clear answers. The good news is is that I am feeling better each day and I don't regret my decision for a second. I will continue to keep you guys updated once I get my full pathology back.

  • Forherself
    Forherself Member Posts: 961 Member
    edited October 2019 #41
    so nice you are over that hurdle

    Just a few more days to wait.   I am glad they did a full staging procedure.  I have thought all along you are getting really good care, and I still do.   So glad you are recovering well.