Grade 1 endometrioid adenocarcinoma and lymphadema

cinjef
cinjef Member Posts: 5
edited January 2015 in Uterine/Endometrial Cancer #1

I'm considering only having a complete hysterectomy vs a hysterectomy and lymphadenectomy based on reading many studies that show virtually no change in survival rates for women who have grade 1 disease and are treated with a hysterectomy with or with out lymphadenectomy.  I was told that the risk of lymphedema is low but it seems so debilitating that I don't want to risk my quality of life.  I have surgery next week and I need to make a decision quick.  Please help, any and all information will be greatly appreciated.  Thank you so much!!!! 

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    That's really a personal

    That's really a personal decision as everyone reacts different.   However I was diagnosed with grade 2 stage 3a endometrial adenocarcinoma and not only did I have a total hysterectomy they also removed about 25 lymph nodes my appendix and omentum.   That was in 2005.   In 2010 I had an additional 11 lymph nodes removed.  I haven't experienced any lymphedema.

    i hope this helps.  My best to you in your upcoming surgery

    Kathy

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #3
    Kaleena said:

    That's really a personal

    That's really a personal decision as everyone reacts different.   However I was diagnosed with grade 2 stage 3a endometrial adenocarcinoma and not only did I have a total hysterectomy they also removed about 25 lymph nodes my appendix and omentum.   That was in 2005.   In 2010 I had an additional 11 lymph nodes removed.  I haven't experienced any lymphedema.

    i hope this helps.  My best to you in your upcoming surgery

    Kathy

    It depends . . .

    I had Grade 1 Stage 1a (early stage, low grade) endometroid adenocarcinoma.  My gyn/onc told me the decision of whether he would sample lymph nodes or not depended on what he found on surgery.  Because my tumor was larger than 2 cm (but only 3 cm), and the percentage of muscle invasion was just 33%, and the cutoff is 50%, he decided he'd better take some nodes.  So he did.  17 of them.  They were all clear, and he said he probably didn't need to, but he didn't want to chance leaving any positive nodes in place.  So, he took them.  My surgery was in 2010. I'm fine. 

    You can discuss this with your surgeon and just make it clear that unless there is an obvious reason to remove nodes, you'd like them left alone.  If there is a need to remove them, tho, he should do it. I worried about lymphedema, too, but that turned out to be simply something to worry about.   I do think I'd rather have lymphedema than have cancer left behind.

    Suzanne

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #4
    Hi, cinjef

    I was UPSC 1a and only had 5 lymph nodes removed.  I didn't know enough before surgery to question this but I trust my doc to have made a good decision after he got in there and looked around.  Only time will tell if he took enough.  The idea of lymph edema is scarey.  What does your MD say?  I wish you the best.

  • Fayard
    Fayard Member Posts: 438 Member
    #5
    Hola,
    I had Clear Cell

    Hola,

    I had Clear Cell Adenocarcinoma, stage 2.  I had 57 lymph nodes removed. I hardy have lymphadema, just a little on my right groin. I had a gyno/oncologist to do the surgery, and that is what he thought he should do. All 57 were clean, thank God! :)

    Like everyone says, it is a very personal decision, between you and your doctor.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #6
    Fayard said:

    Hola,
    I had Clear Cell

    Hola,

    I had Clear Cell Adenocarcinoma, stage 2.  I had 57 lymph nodes removed. I hardy have lymphadema, just a little on my right groin. I had a gyno/oncologist to do the surgery, and that is what he thought he should do. All 57 were clean, thank God! :)

    Like everyone says, it is a very personal decision, between you and your doctor.

    Lymph nodes

    Cinjef,

    I had 14 lymph nodes removed and I wish the gyn/onc took out more.  I have no side effects from it.  It wasn't until I had surgery and the pathology report came back that I learned that I had-not a grade 2 as my uterine biopsy suggested- but rather a grade 3 cancer.  If my doctor knew this at the time of the surgery he probably would've taken out more lymph nodes along with my omentum, but that did not happen.  The decision to remove lymph nodes is based on such factors as what your surgeon sees when he looks inside you.  I didn't have a CA-125 test before surgery either, and I wish that I had.  Water under the bridge, I suppose.

    Best wishes with your surgery!

    Cathy

      

     

  • cinjef
    cinjef Member Posts: 5
    #7
    Thank you everyone :) Did anyone have a vague crampy feeling?

    I really appreciate all of the information.  I'm still on the fence about the lympadenectomy but everyone's comments have been very helpful.  Did anyone have any other vague symptoms that you would now attribute to the cancer?  I have a sort of pressure or the feeling you would have when you are getting ready to start your period, like a fullness or a non painful cramp. It started after I had the hysteroscopy,it doesn't hurt and I wonder if it's just psychosomatic.

  • KayBB
    KayBB Member Posts: 15
    #8
    cinjef said:

    Thank you everyone :) Did anyone have a vague crampy feeling?

    I really appreciate all of the information.  I'm still on the fence about the lympadenectomy but everyone's comments have been very helpful.  Did anyone have any other vague symptoms that you would now attribute to the cancer?  I have a sort of pressure or the feeling you would have when you are getting ready to start your period, like a fullness or a non painful cramp. It started after I had the hysteroscopy,it doesn't hurt and I wonder if it's just psychosomatic.

    lympadenectomy
    Hey cinjef, On the first of October I started bleeding. I went to my GYN and my uterus wall was 50 cm with a tumor. On the 27th of October 2014, I had hysterectomy with three lymph nodes removed.   One lymph had a growth and I am glad they removed them.  I am like Cathy and wish they removed more.  I have stage3A Carcinosarcoma of the endometrium.  I trust my doctors and team and the decision they made.  I have finish three rounds of chemo and just started radiation.  Going to have 28 radiations and then 3 more rounds of chemo.  Hope everything goes well.  
  • DrienneB
    DrienneB Member Posts: 182
    #9
    Lymph Node Dissection

    Hey I know it's a year later---but what did you decide about lymph nodes? It's interesting reading people's ideas about that. My surgeon did not wait to see what my tumor looked like. Based on the grade 3 that was shown in my initial uterine biopsy done by my ob/gyn, the gyn/onc went for the lymph nodes first. She took out 84. Then she did the total hysterectomy. All my nodes were cancer free. I have lymphedema in both legs, on my back and rear end, and in one arm. Lymphedema was a complete suprize to me. In fact, no one told me I had a rare and aggressive tumor type. I learned it from the reports I read after surgery. I don't blame you for being cautious.

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