Diagnosed with endometrial cancer---18 years post hysterectomy

Barb04
Barb04 Member Posts: 5
edited March 2014 in Ovarian Cancer #1
Would be helpful to hear from others who have experienced with type of cancer, and especially from those who have had a full hysterectomy years before the diagnosis.....

Comments

  • groundeffect
    groundeffect Member Posts: 639 Member
    #2
    Your post's title was cut off, so I thought I'd put the "18 years post hysterectomy" in my reply. Did you post your query to the uterine cancer board? Endometrial would be uterine cancer.
  • RosaC1201
    RosaC1201 Member Posts: 8
    #3
    I just recently at the end of 2001 had a radical hysterectomy due to uterine/endometrial cancer. I was stage 2. I have had radiation therapy and so far all is well. As of today, June 24 I was sent a certified letter from the family health clinic that my pap smear came back abnormal and has scheduled me for a colposcopy, but not until august 12th. I am now freaking out because I don't think I can handle cancer again, this was the 2nd bout w/cancer since 1984, the first time was thyroid...thanks for reading this
  • Barb04
    Barb04 Member Posts: 5
    #4
    RosaC1201 said:

    I just recently at the end of 2001 had a radical hysterectomy due to uterine/endometrial cancer. I was stage 2. I have had radiation therapy and so far all is well. As of today, June 24 I was sent a certified letter from the family health clinic that my pap smear came back abnormal and has scheduled me for a colposcopy, but not until august 12th. I am now freaking out because I don't think I can handle cancer again, this was the 2nd bout w/cancer since 1984, the first time was thyroid...thanks for reading this

    My radical hysterectomy was in 1987 for endometriois and ovarian cysts (no cancer then), and now 17 years later, I have endometrial cancer, something that I never imagined possible. I had surgery 3/4/04 to have the tumor removed, but before surgery had to have a colonoscopy and that checked out okay. I finished radiation in early May and am still recovering. Since your pap smear came back abnormal, it sure does seem that August 12 is a long time to wait, and I, too, would be freaking out like you are! Have you had a cat scan? That's what showed the tumor in my lower left pelvic area when I had the abdomen/pelvic scan. Interesting in that I too had thyroid surgery, but it wasn't cancer back in 1998. Maybe we just got it early. I hope your doctor can speed things up a bit for you. Good luck to you (sorry to be so long-winded!). (PS: have you heard of others whose cancer developed after the hysterectomy?)
  • Barb04
    Barb04 Member Posts: 5
    #5
    groundeffect said:

    Your post's title was cut off, so I thought I'd put the "18 years post hysterectomy" in my reply. Did you post your query to the uterine cancer board? Endometrial would be uterine cancer.

    No, I haven't posted to uterine board, but will do. Thanks. \\
  • RosaC1201
    RosaC1201 Member Posts: 8
    #6
    Barb04 said:

    My radical hysterectomy was in 1987 for endometriois and ovarian cysts (no cancer then), and now 17 years later, I have endometrial cancer, something that I never imagined possible. I had surgery 3/4/04 to have the tumor removed, but before surgery had to have a colonoscopy and that checked out okay. I finished radiation in early May and am still recovering. Since your pap smear came back abnormal, it sure does seem that August 12 is a long time to wait, and I, too, would be freaking out like you are! Have you had a cat scan? That's what showed the tumor in my lower left pelvic area when I had the abdomen/pelvic scan. Interesting in that I too had thyroid surgery, but it wasn't cancer back in 1998. Maybe we just got it early. I hope your doctor can speed things up a bit for you. Good luck to you (sorry to be so long-winded!). (PS: have you heard of others whose cancer developed after the hysterectomy?)

    Well as of today sunday june 26th, the doctor is not going to do the colposcopy, my abnormal result they said was lowgrade and the decided to put me on some estrogen cream, which of course my insurance does not cover and hell I can't afford it, but they are going to monitor me for the next 2mos. I go back in September, but they are sending me for blood work and a chest xray, I was told if he cancer returns it won't return in the same area, it would be the lungs. I was told after a hysterectomy, you can still get cancer in the same area, but it would be on the walls of the vagina, I asked why and how they do a pap smear when you have no cervix, I had read an article about it last week,of course the answer was its possible to have cancer re occur there, well I am confused now of course, but hopefully all will be fine. I hope all goes well with you and I will say a prayer..sorry so long..
  • RosaC1201
    RosaC1201 Member Posts: 8
    #7
    Barb04 said:

    My radical hysterectomy was in 1987 for endometriois and ovarian cysts (no cancer then), and now 17 years later, I have endometrial cancer, something that I never imagined possible. I had surgery 3/4/04 to have the tumor removed, but before surgery had to have a colonoscopy and that checked out okay. I finished radiation in early May and am still recovering. Since your pap smear came back abnormal, it sure does seem that August 12 is a long time to wait, and I, too, would be freaking out like you are! Have you had a cat scan? That's what showed the tumor in my lower left pelvic area when I had the abdomen/pelvic scan. Interesting in that I too had thyroid surgery, but it wasn't cancer back in 1998. Maybe we just got it early. I hope your doctor can speed things up a bit for you. Good luck to you (sorry to be so long-winded!). (PS: have you heard of others whose cancer developed after the hysterectomy?)

    this is the continuing reply....I am confused of course, I dont understand how you can get endometrial cancer if you have no uterus, seeing that endometrial has to do with the walls of the uterus?? That is something that I thought couldn't happen, I will keep that in the back of my mind and ask questions when I go back to the doctor...thats for sure, Keep well and will look for your reply
    thanks Linda :)
  • Barb04
    Barb04 Member Posts: 5
    #8
    RosaC1201 said:

    this is the continuing reply....I am confused of course, I dont understand how you can get endometrial cancer if you have no uterus, seeing that endometrial has to do with the walls of the uterus?? That is something that I thought couldn't happen, I will keep that in the back of my mind and ask questions when I go back to the doctor...thats for sure, Keep well and will look for your reply
    thanks Linda :)

    Yes, that's exactly what I said, I have no uterus, how can it be endometrial cancer? My primary physcian and surgeon had never seen this before...from what I'm told, when I had the hysterectomy, some microscopic cells remained, and those turned into a tumor then became cancerous. At first the radiologist's report indicated that it was ovarian cancer! But after surgery and the pathologist examined the slide, it was determined to be endometrial. The physican assistant in the gynecologic onocologist office I'm seeing now says that they've seen this before as well as ovarian cancer when there are NO reproductive organs left...and years post-hysterectomy. The other problem I'm having in dealing with this is that my gynecologist has kept me on Premarin since 1987, and now I learn that this hormone "feeds" endometrial cells, so it seems that we've been helping the tumor to grow, which leaves me quite frustrated/angry, etc. But what to do now, except hope any cells have not migrated elsewhere...at least in the pelvic area, the radiation should have zapped any, I guess. It's just that women who have had hysterectomy because of endometrios should be aware of the estrogen factor in causing problems like mine several years in the future. My goodness, I've been long-winded again--sorry! If you get any info from your doctor along these lines, please share. And of course, good luck and well wishes to you. Thanks.\\\barb
  • Trish1
    Trish1 Member Posts: 1
    #9
    Barb04 said:

    Yes, that's exactly what I said, I have no uterus, how can it be endometrial cancer? My primary physcian and surgeon had never seen this before...from what I'm told, when I had the hysterectomy, some microscopic cells remained, and those turned into a tumor then became cancerous. At first the radiologist's report indicated that it was ovarian cancer! But after surgery and the pathologist examined the slide, it was determined to be endometrial. The physican assistant in the gynecologic onocologist office I'm seeing now says that they've seen this before as well as ovarian cancer when there are NO reproductive organs left...and years post-hysterectomy. The other problem I'm having in dealing with this is that my gynecologist has kept me on Premarin since 1987, and now I learn that this hormone "feeds" endometrial cells, so it seems that we've been helping the tumor to grow, which leaves me quite frustrated/angry, etc. But what to do now, except hope any cells have not migrated elsewhere...at least in the pelvic area, the radiation should have zapped any, I guess. It's just that women who have had hysterectomy because of endometrios should be aware of the estrogen factor in causing problems like mine several years in the future. My goodness, I've been long-winded again--sorry! If you get any info from your doctor along these lines, please share. And of course, good luck and well wishes to you. Thanks.\\\barb

    Hello Barb My DR
    .
    Hi Barb, My Dr dx. me with endo.cancer in Jan. nearly 10 yrs. after my radical hyst. for uterine cancer! I too was stunned to learn that my tumor was estrogen positive and that I had been prescribed Premarin without the knowledge of risk involved! Currently I am undergoing 6 chemo treatments to reduce the tumor...because my 3cm. tumor is behind the vaginal wall and close to the rectum




    ...this is my best chance of avoiding an 85% of colostomy. If it shrinks enough there will be no
    surgery and I will proceed directly to 5 wks. of radiation. I have had positive results to the Taxol and Carboplantin chemo...I hope to continue. Keeping you in my thoughts. Trish
  • Julie E
    Julie E Member Posts: 1 Member
    edited February 2020 #10
    Barb04 said:

    My radical hysterectomy was in 1987 for endometriois and ovarian cysts (no cancer then), and now 17 years later, I have endometrial cancer, something that I never imagined possible. I had surgery 3/4/04 to have the tumor removed, but before surgery had to have a colonoscopy and that checked out okay. I finished radiation in early May and am still recovering. Since your pap smear came back abnormal, it sure does seem that August 12 is a long time to wait, and I, too, would be freaking out like you are! Have you had a cat scan? That's what showed the tumor in my lower left pelvic area when I had the abdomen/pelvic scan. Interesting in that I too had thyroid surgery, but it wasn't cancer back in 1998. Maybe we just got it early. I hope your doctor can speed things up a bit for you. Good luck to you (sorry to be so long-winded!). (PS: have you heard of others whose cancer developed after the hysterectomy?)

    endometrial cancer -- 11 years post hysterctomy

    Hi, Barb.  I am hoping you still get messages from this posting even though it has been 16 years!.  At the end of 2018, I too was diagnosed with endometrial cancer, 11 years post my hysterctomy due to a burst endometrioma.  Like you, I was too young to be without hormones so they put me on Premarin.  11 years later, I grew another endometrioma from the bits left behind and this time there was cancer in the mass.  The mass burst during removal and I did 3 round of carbol/taxol.  So far my CA-125 is measuring at 7 and 9 and I am being monitored every 4 months.  I am very interested in what has happened to you on your journey and would appreciate if you would share.

    Regards,

    Julie

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #11
    Hi Julie. You are right, this

    Hi Julie. You are right, this thread goes back many years and I don't know if they check in or not. 

     

    There is a Uterine Discussion Board with a great group of people who would love to hear from you.  Please stop over.

  • fspencer323
    fspencer323 Member Posts: 2 Member
    #12

    I was diagnosed with ovarian cancer twenty years after a total hysterectomy. Talk about total shock! Had six chemo treatments with taxol and carboplatin. Was cancer free for about six years then had a recurrence which came as a bowel obstruction. Obstruction was removed and had six more chemo treatments. Last treatment was December 2022. Cancer free at this time. Posting this to let everyone know that cancer can happen many years after a hysterectomy

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #13

    fspencer323, I am sorry to hear the developments but want to thank you for sharing this information. Often we hear "with your history" and being vigilant is important. I hope you continue the dance with NED going forward.

  • fspencer323
    fspencer323 Member Posts: 2 Member
    #14

    Something I forgot to mention from my post a few days ago. My CA 125 was always normal. Never above 12. When I had the recurrence I went to MD Anderson for a second opinion. My dr there said that that test doesn’t work for everyone. I’m posting this to let everyone know a low number doesn’t always mean you are safe.

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