Endometrial cancer 50% into myometrium

Tresia23
Tresia23 Member Posts: 77
edited March 2014 in Uterine/Endometrial Cancer #1
Hi,
I am on third day post op recovering from radical hysterectomy (ovaries, uterus, fallopian tubes and cervix). I still cannot quite believe that I have cancer. I have always been healthy. Never smoked or drank alcohol. Average weight but very stressed most of my life for various reasons.Started menses at 11 and menopause at 54. Never took hormones of any description except when I first started periods and had bad pain and heavy bleeding. Always a problem for me.

My gyne oncolog surgeon told me it is endometriod. I do not want to have nodes removed but I believe this may be the next step. From the hysteroscopy and biopsy it was not clear how invasive. Had frozen section during hysterectomy where it was found to be 50%. Originally thought to be 6/15 and now 7/14. Has anyone else decided to keep lymph nodes given a choice. I do not want to develop lymphodema. I am an rn and I have cared for women with endometrial ca as well as other cancers with lymphodema. It is pretty tough trying to manage and I do not think I could face it.

I have found this site very helpful and did not realise how many courageous women there are out there. It is very different being a rn treating cancer patients and then having the role reversed. No-one can prepare for this.

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    Welcome Tresia
    Sorry you've been hit with the cancer as well, but know you've come to a place with lots of helpful advice and knowledge.

    I as well had a total hysterectomy and during surgery oncol removed 25 lymph nodes -- didn't give me option, just told me this is what we need to do...the end! Cancer was found in only 1 pelvic lymph node. I had 6 rounds of chemo and 33 sessions of external pelvic radiation. I must be lucky, as NEVER had side affects of lymphodema....mainly issues with bowels from radiation. Also I'm an avid work-out gal and think constant movement forcing fluids thru lymph nodes is of help...think? At least that's what I've been told helped me. Also a big advocate of yoga, which helps with any lymphodema issues.

    You've truly had some first-hand experience seeing others with cancer and now you have to wear the hat of a patient...never easy! I will tell you cancer has made me look so differently at life, realizing we only have one life, so give it all you can. I live this way each and every day.

    Before cancer I was as you, healthy I thought --- not overweight by any means, ate lots of great foods, not a fast-food junkie, never smoked or drank alcohol, and an avid runner and exercise fiend. I was blown away by the diagnosis!!!

    I hope you can find help here, as I've found. Plse keep us posted on your progress, as we care.

    Best to you,
    Jan
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #3
    jazzy1 said:

    Welcome Tresia
    Sorry you've been hit with the cancer as well, but know you've come to a place with lots of helpful advice and knowledge.

    I as well had a total hysterectomy and during surgery oncol removed 25 lymph nodes -- didn't give me option, just told me this is what we need to do...the end! Cancer was found in only 1 pelvic lymph node. I had 6 rounds of chemo and 33 sessions of external pelvic radiation. I must be lucky, as NEVER had side affects of lymphodema....mainly issues with bowels from radiation. Also I'm an avid work-out gal and think constant movement forcing fluids thru lymph nodes is of help...think? At least that's what I've been told helped me. Also a big advocate of yoga, which helps with any lymphodema issues.

    You've truly had some first-hand experience seeing others with cancer and now you have to wear the hat of a patient...never easy! I will tell you cancer has made me look so differently at life, realizing we only have one life, so give it all you can. I live this way each and every day.

    Before cancer I was as you, healthy I thought --- not overweight by any means, ate lots of great foods, not a fast-food junkie, never smoked or drank alcohol, and an avid runner and exercise fiend. I was blown away by the diagnosis!!!

    I hope you can find help here, as I've found. Plse keep us posted on your progress, as we care.

    Best to you,
    Jan

    Tresia
    Hi there.

    I as well had a total hysterectomy including removal of fallopian tubes, ovaries, and some aorta lymph nodes. Prior to the surgery I had endometrial biopsy, ct, pet scan and needle biopsy, so they knew going in that it had already spread to the lymph nodes, and I was advised they would be removing them as well. Because the cancer had gone to the lymph nodes etc., I also had six chemos and 25 radiations. I was stage 3C.

    I had an issue post surgery with fluid retention from my feet to my rear, but it did get better and go away. I gained 25 pounds of fluids during that short time.

    My last chemo was Nov 2nd. I am now awaiting my white counts to go back up.

    These boards are a great source of information, inspriration, and support.

    Let us know what happens.

    Hugs and healing,

    Cindy
  • nempark
    nempark Member Posts: 681
    #4
    Tresia
    Whether we are 30, 40, 50, 60 what ever age when we are dx with such a dreadful disease, it is a shock to our system. But my friend, we were created to be able to endure. You are going to be amazed at how well you are going to handle this because it's human nature to want to get better and get back to a normal life, you can do!!!!!you see sweetheart, don't lose faith--- there is a God and sometimes it seems that he dosen't exist but he does things in his own time. And please do not blame Him. Lean on him and he will give you strength and energy that you never knew you had. Big hugs to you!!!Can you feel it? You will do fine Nurse. My best to you. Please keep in touch. j
  • Tresia23
    Tresia23 Member Posts: 77
    #5
    jazzy1 said:

    Welcome Tresia
    Sorry you've been hit with the cancer as well, but know you've come to a place with lots of helpful advice and knowledge.

    I as well had a total hysterectomy and during surgery oncol removed 25 lymph nodes -- didn't give me option, just told me this is what we need to do...the end! Cancer was found in only 1 pelvic lymph node. I had 6 rounds of chemo and 33 sessions of external pelvic radiation. I must be lucky, as NEVER had side affects of lymphodema....mainly issues with bowels from radiation. Also I'm an avid work-out gal and think constant movement forcing fluids thru lymph nodes is of help...think? At least that's what I've been told helped me. Also a big advocate of yoga, which helps with any lymphodema issues.

    You've truly had some first-hand experience seeing others with cancer and now you have to wear the hat of a patient...never easy! I will tell you cancer has made me look so differently at life, realizing we only have one life, so give it all you can. I live this way each and every day.

    Before cancer I was as you, healthy I thought --- not overweight by any means, ate lots of great foods, not a fast-food junkie, never smoked or drank alcohol, and an avid runner and exercise fiend. I was blown away by the diagnosis!!!

    I hope you can find help here, as I've found. Plse keep us posted on your progress, as we care.

    Best to you,
    Jan

    thank you
    Hi jazzy1,

    Thank you for your post. I was very encouraged to hear your experience of surviving pretty severe treatment regime without having lymphodema issues. I also have been a yoga student for quite a few years now although I gave up for a while when I was finishing a degree. Started again before surgery but now I have to wait until I am healed a bit more. I am very grateful to find support from CSN network. Sharing relieves the burden somehow.

    Best wishes,
    Tresia
  • Tresia23
    Tresia23 Member Posts: 77
    #6
    hopeful girl 1 said:

    Tresia
    Hi there.

    I as well had a total hysterectomy including removal of fallopian tubes, ovaries, and some aorta lymph nodes. Prior to the surgery I had endometrial biopsy, ct, pet scan and needle biopsy, so they knew going in that it had already spread to the lymph nodes, and I was advised they would be removing them as well. Because the cancer had gone to the lymph nodes etc., I also had six chemos and 25 radiations. I was stage 3C.

    I had an issue post surgery with fluid retention from my feet to my rear, but it did get better and go away. I gained 25 pounds of fluids during that short time.

    My last chemo was Nov 2nd. I am now awaiting my white counts to go back up.

    These boards are a great source of information, inspriration, and support.

    Let us know what happens.

    Hugs and healing,

    Cindy

    Thank you for the hugs
    Felt pretty tearful when I read the replies to my first post. It is hard to reach out when I have always felt I had control over most things in my life. Even after surgery that feeling of just surrendering as I was totally unable to do anything for myself for a while at least.

    I am glad to hear the fluid retention improved and went away. I have heard since from others that lymphodema is not always a permanent problem so I am getting better informed. It must be tough having to face chemo and radiation after having surgery. Hope you are not feeling too bad.

    You are right. These discussion boards are just wonderful in keeping our spirits up. So many brave strong and beautiful women who just step up and get on with it.

    Love,
    Tresia
  • Tresia23
    Tresia23 Member Posts: 77
    #7
    nempark said:

    Tresia
    Whether we are 30, 40, 50, 60 what ever age when we are dx with such a dreadful disease, it is a shock to our system. But my friend, we were created to be able to endure. You are going to be amazed at how well you are going to handle this because it's human nature to want to get better and get back to a normal life, you can do!!!!!you see sweetheart, don't lose faith--- there is a God and sometimes it seems that he dosen't exist but he does things in his own time. And please do not blame Him. Lean on him and he will give you strength and energy that you never knew you had. Big hugs to you!!!Can you feel it? You will do fine Nurse. My best to you. Please keep in touch. j

    Keeping the faith
    Hi,

    Thank you for your encouraging post. I really did feel a strength and energy from somewhere.I have wavered in my life over believing in God. But have always somehow believed there is a greater power, or spirit or even some universal essence that is love and that never dies. It just continues through the cycle of life and death.

    Watched some surgery of my op on YouTube yesterday and was moved at the care and precision of some of the surgeons. Really needed to know what had happened to my body and what was left of me inside. Felt a real sense of loss and mourning but was thankful that my reproductive organs have given me and my family three beautiful children.

    You are so kind,
    Love,
    Tresia
  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #8
    Maybe my story is relevant....
    I had endometrioid adenocarcinoma of the uterus, cervix and ovaries. It was stage 3, 75% through the myometrium. I did not undergo a "surgical staging" and never did have my lymph nodes removed. The cancer was never detected via CT or PET-CT in the lymph nodes or anywhere outside of the cervix, uterus or ovaries.
    My surgery was in Jan of 2009 and I had treatment with carbo/taxol, external and internal radiation. I just had a CT scan and have had no recurrence.
    Hope this helps in your decision making!
  • Tresia23
    Tresia23 Member Posts: 77
    #9
    Lisa 00 said:

    Maybe my story is relevant....
    I had endometrioid adenocarcinoma of the uterus, cervix and ovaries. It was stage 3, 75% through the myometrium. I did not undergo a "surgical staging" and never did have my lymph nodes removed. The cancer was never detected via CT or PET-CT in the lymph nodes or anywhere outside of the cervix, uterus or ovaries.
    My surgery was in Jan of 2009 and I had treatment with carbo/taxol, external and internal radiation. I just had a CT scan and have had no recurrence.
    Hope this helps in your decision making!

    Endometrioid adenocarcinoma
    Hi,

    Thanks for your message. I originally saw a gynaecologist/obstetrician who told me at consultation, before I had even had surgery that 'it is probably cancer'. I took an immediate dislike to her for taking all my hope away. She was big and jolly and maybe that works for new mums or IVF couples but not for women facing a cancer diagnosis. I immediately started searching for a gyn/onc and found a beautiful doctor who has been absolutely straight with me but has listened to my concerns without rushing me into anything. I will know tomorrow whether I have to have lymph nodes removed. It was not done during radical hyster as it seemed it was less than 50% but now maybe more.

    I am so glad you are staying well and it does help just to talk things through. Thank you so much and blessings to you and your family over the holiday season and into New Year.

    Tresia

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