just diagnosed

scarednconfused
scarednconfused Member Posts: 17
in Uterine/Endometrial Cancer #1

I posted about a week ago about a uterine stump. Today I met with the gyn onc and have been diagnosed with stage IB GRADE 3 clear cell adenocarcinoma uterus. That was found in a pap. I'm nervous about surgery which is April 29th. Can anyone explain how aggressive this cancer is and what I should expect during surgery well after. Also I'm a little scared that if that's what was found just on a pap what's really going on inside. Any input would be appreciated about anything I will go through or what to expect? Thanks in advance

Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    #2
    Hi

    Saw your post and while I don't know about your   dx, I am grade 3 or "C" also.  Didn't want you to go all night thinking you were all alone.  I am a 1a,grade 3 UPSC.  I am 3 1/2 YEARS out of chemo, so while scary, it's the middle of the night and you are driving yourself crazy with questions that no one can really answer.  They may do an explotory surgery or they may have a plan.   Even if they tell you they know what they will find, they don't till they get in there.  Take a deep breath, and try to at least try to get some rest.  I know it's hard...my mind was like a squirrel on Crack!  Someone will be here to help you soon.  I am up til late and looks like we are in the same time zone so you can talk to me by pm if not on this board.  Best, Derajo

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #3
    Hello from Dallas, glad you found this site.

    I have a grade 3cancer carcinoma sarcoma it was stage 3c1. I am 2 1/2 years from last treatment. Doing ok so far. Take someone with you to dr appts to write things down. This is doable and you can get through it and find that you are stronger than you thought. Write all your questions down when you think of them because when you go to the dr you might forget to ask them. Keep asking the questions until you get an answer. The ladies on this site will be here to support you. Good luck and I will be praying for you too. Trish

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #4
    Trish's post was short,

    Trish's post was short, sweet, and dead on the money.  No need for me to say the same thing again.  You are going to amaze yourself with your strength.

  • scarednconfused
    scarednconfused Member Posts: 17
    #5
    NoTimeForCancer said:

    Trish's post was short,

    Trish's post was short, sweet, and dead on the money.  No need for me to say the same thing again.  You are going to amaze yourself with your strength.

    thanks to

    Thanks to all of you!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #6
    scarednconfused said:

    thanks to

    Thanks to all of you!

    Did you ask if they are going

    Did you ask if they are going to take lymph node samples?  Omentum?  (I didn't look up the spelling on that - sorry)  Hopefully they sat down and walked you through it all.  I loved that about my gyn onc.  I was so much more relaxed after leaving him, still terrified like you, but I knew what was going to happen.  Again, one step at a time and see what is going on. 

    hugs!

  • scarednconfused
    scarednconfused Member Posts: 17
    #7
    NoTimeForCancer said:

    Did you ask if they are going

    Did you ask if they are going to take lymph node samples?  Omentum?  (I didn't look up the spelling on that - sorry)  Hopefully they sat down and walked you through it all.  I loved that about my gyn onc.  I was so much more relaxed after leaving him, still terrified like you, but I knew what was going to happen.  Again, one step at a time and see what is going on. 

    hugs!

    surgery

    I was just told she was hoping she could just get it all at once and that unless she sees different then she will go for the lymphnodes and such. They found mine through a pap who knew! My biggest fear is that it's worse inside once she cuts me open. But I'm praying. MmHg husband at the moment is in denial and I at this point am still in a shocked state of mine it's almost surreal, I know I'm scared I've explained to my kids as I'm only 32 they're young do how much do they really understand. I've been through so much in my life I could write a book and it would be a best seller I've always been a fighter and I'll fight my sister said that was the one thing she was jealous of is that no matter what I bounce back on top, in this case I pay that's what'll happen. My doctor just said she hoped what inside its what's on my pap but there's now way of knowing until she gets in there I also have a dermoid cyst so she doesn't want to have to keep putting me through more surgeries than I need. I appreciate all the support in this group especially since this is day two of diagnosis. So again thank you all any type of info people are willing to share our what I'm too expect after surgery would be greatly appreciated!!

  • scarednconfused
    scarednconfused Member Posts: 17
    #8
    debrajo said:

    Hi

    Saw your post and while I don't know about your   dx, I am grade 3 or "C" also.  Didn't want you to go all night thinking you were all alone.  I am a 1a,grade 3 UPSC.  I am 3 1/2 YEARS out of chemo, so while scary, it's the middle of the night and you are driving yourself crazy with questions that no one can really answer.  They may do an explotory surgery or they may have a plan.   Even if they tell you they know what they will find, they don't till they get in there.  Take a deep breath, and try to at least try to get some rest.  I know it's hard...my mind was like a squirrel on Crack!  Someone will be here to help you soon.  I am up til late and looks like we are in the same time zone so you can talk to me by pm if not on this board.  Best, Derajo

    hi

    Thank you for your response actually I'm in a fog it's surreal I've asked why me but there's no answer for that, I just gotta fight!

  • nancibee
    nancibee Member Posts: 59 Member
    #9
    Clear cell

    I don't know how they can stage it prior to surgery. The staging is based on the percentage of invasion and whether it has gone beyond the uterus. My initial biopsy showed clear cell. I was told by my gyn/onc that I had an unusually aggressive variant and the game plan was to remove everything - uterus, cervix, ovaries, lymph nodes, and tubes (where the cancer likes to hide). It was the post-surgery pathology that came back as stage 1b UPSC which is also aggressive. Guidelines recommend chemo for grade 3 cancers. The only question regarding radiation was internal or external but not to just observe.

    My recovery from supposedly minimally invasive Da Vinci was difficult but that was probably my fault because I did not take it easy. Chemo wasn't that bad For me but everyone is different. Looking like Uncle Fester was the worst part. I thought about sticking a light bulb in my mouth on Halloween and wearing my black hooded robe. I could deal with losing the hair on my head but I was very self-conscious about not having eyebrows and eyelashes. 

    the good news is that it will be two years on 5/2. And there are a lot of others on this board who had aggressive cancers who have made it much longer. Our bodies can be more aggressive than aggressive cancer invaders and win the battle. 

      

     

  • scarednconfused
    scarednconfused Member Posts: 17
    #10
    nancibee said:

    Clear cell

    I don't know how they can stage it prior to surgery. The staging is based on the percentage of invasion and whether it has gone beyond the uterus. My initial biopsy showed clear cell. I was told by my gyn/onc that I had an unusually aggressive variant and the game plan was to remove everything - uterus, cervix, ovaries, lymph nodes, and tubes (where the cancer likes to hide). It was the post-surgery pathology that came back as stage 1b UPSC which is also aggressive. Guidelines recommend chemo for grade 3 cancers. The only question regarding radiation was internal or external but not to just observe.

    My recovery from supposedly minimally invasive Da Vinci was difficult but that was probably my fault because I did not take it easy. Chemo wasn't that bad For me but everyone is different. Looking like Uncle Fester was the worst part. I thought about sticking a light bulb in my mouth on Halloween and wearing my black hooded robe. I could deal with losing the hair on my head but I was very self-conscious about not having eyebrows and eyelashes. 

    the good news is that it will be two years on 5/2. And there are a lot of others on this board who had aggressive cancers who have made it much longer. Our bodies can be more aggressive than aggressive cancer invaders and win the battle. 

      

     

    I'm not quite sure how she did it either, my nurse asked me if she did a biopsy I said no she then asked if I recently had any Pap smears I told her yes probably 5 in the last month. She then said that was how she found it. And was able to stage and grade it. I have a dermoid cyst as well and as said above she doesn't want to put me through more than I need to at this point I had a hysterectomy 5 years ago for cervical dysplasia the growth and such is growing from my vaginal cuff that may be how she's able to get the diagnosis during the pap by testing that area. I'm not exactly sure but I've looked her up and she's an excellent gyn onc. I have paperwork with my diagnosis. It

  • nancibee
    nancibee Member Posts: 59 Member
    #11
    scarednconfused said:

    I'm not quite sure how she did it either, my nurse asked me if she did a biopsy I said no she then asked if I recently had any Pap smears I told her yes probably 5 in the last month. She then said that was how she found it. And was able to stage and grade it. I have a dermoid cyst as well and as said above she doesn't want to put me through more than I need to at this point I had a hysterectomy 5 years ago for cervical dysplasia the growth and such is growing from my vaginal cuff that may be how she's able to get the diagnosis during the pap by testing that area. I'm not exactly sure but I've looked her up and she's an excellent gyn onc. I have paperwork with my diagnosis. It

    Vaginal cuff

    My radiation doctor told me that if my cancer ever recurred at the vaginal cuff it would be easily treatable. I don't have paps anymore. I've been told by 2 gyn/onc and one regular oncologist that they aren't necessary. Not sure why but they all seem to think physical exam and CA 125 are enough. Hopefully they are right.

     

    I'm sure you'll be fine. Sounds like you are in good hands.

  • scarednconfused
    scarednconfused Member Posts: 17
    #12
    nancibee said:

    Vaginal cuff

    My radiation doctor told me that if my cancer ever recurred at the vaginal cuff it would be easily treatable. I don't have paps anymore. I've been told by 2 gyn/onc and one regular oncologist that they aren't necessary. Not sure why but they all seem to think physical exam and CA 125 are enough. Hopefully they are right.

     

    I'm sure you'll be fine. Sounds like you are in good hands.

    Thank you but

    Thank you but however I was in a car accident 2 yrs ago and found this growth I was never informed due to me being unconscious etc in 2 yrs time it has growths on it now. I pray your right and its that easily treatable I hadn't gone to the Dr inbetween Until I started having sever cramping pain. I thank you for your knowledge 

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