New to board - 25 year cancer survivor and disn't know I had cancer at time of hystorectomy! Now it'

dgalaxy
dgalaxy Member Posts: 11
in Ovarian Cancer #1
Had hystorectomy when I was 24 due to endometreosis. Was told I had Pre cancerous cell growth. I was "cured" after hysterectomy. Now, 25 years later, I have ovarian cancer again, only now it is in my lymph nodes!

Cancer showed itself in a lump near my collarbone. After a CT scan, Sonogram of arm (to rule out blood clot), MRI, and PET/CT scan, then a biopsy I was told it was a adencarcinoma of unknow origin. Pathology tests were done, a health history taken, and records found from the original hystoectomy. It was determined that I actually had ovarian cancer with a low malignancy which had spread through out my reproductive organs. They thought at the time all I needed was surgery.

Now, 25 years later, it has come back. I will be getting chem of taxol/carboplatin. Hopefully this will send this demon back in to remission for at least another 25 years! I can hope.

Comments

  • JoWin615
    JoWin615 Member Posts: 150 Member
    #2
    Wow.
    What a story. I was interested because my OVCA presented itself in the same way - a swollen node near my collarbone. You will get a lot of love and support on this board. There are a lot of knowledgeable people here.

    Best of luck during your chemo, Jo
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #3
    JoWin615 said:

    Wow.
    What a story. I was interested because my OVCA presented itself in the same way - a swollen node near my collarbone. You will get a lot of love and support on this board. There are a lot of knowledgeable people here.

    Best of luck during your chemo, Jo

    Incredible story!
    Here's hoping that the chemo does the trick and you have at least 25 more years of remission!

    Take care,
    Kelly
  • jlw79
    jlw79 Member Posts: 3
    #4
    that is very inspirational
    that is very inspirational for me. Since it's been 4 1/2 years ago since intial dx of ovarian cancer 3C (28 yr) and now this year a reoccurance
  • dgalaxy
    dgalaxy Member Posts: 11
    #5
    jlw79 said:

    that is very inspirational
    that is very inspirational for me. Since it's been 4 1/2 years ago since intial dx of ovarian cancer 3C (28 yr) and now this year a reoccurance

    Never let your guard down!
    I think the biggest lesson I have learned from this is to never let your guard down, even if your cancer is a low malignancy type. I just wish that 25 years ago the doctors would have told us it was a cancer and not downplay it. I would have been mush more proactive had I thought my historectomy was because of cancer and not "pre-cancerous" tumors. I guess even the doctors have learned a lot over the past many years.
  • jbeans888
    jbeans888 Member Posts: 313
    #6
    jlw79 said:

    that is very inspirational
    that is very inspirational for me. Since it's been 4 1/2 years ago since intial dx of ovarian cancer 3C (28 yr) and now this year a reoccurance

    I agree. Your story is
    I agree. Your story is inspirational. Stay strong and positive. I also was dx with 3c last year at 31. We are here for you girl and here is to another 25 yrs
  • dgalaxy
    dgalaxy Member Posts: 11
    #7
    jbeans888 said:

    I agree. Your story is
    I agree. Your story is inspirational. Stay strong and positive. I also was dx with 3c last year at 31. We are here for you girl and here is to another 25 yrs

    I am going to get a second
    I am going to get a second opinion on my diagnosis and treatment next week. Something this life changing can not be done on just one doctor's opinion. I still have my first chemo scheduled for next week as well. I am not letting this demon get any stronger than it already is. I'm glad that my story has been inspirational to some of you. I just couldn't believe it when I was first told I had cancer, let alone ovarian cancer since I no longer had ovaries. Who would have thought that was possible. I now understand that the original cancer can reoccur almost anywhere in the body and still be genetically the same as the original. I find this is facinating and scarry at the same time!
  • carolenk
    carolenk Member Posts: 907 Member
    #8
    dgalaxy said:

    I am going to get a second
    I am going to get a second opinion on my diagnosis and treatment next week. Something this life changing can not be done on just one doctor's opinion. I still have my first chemo scheduled for next week as well. I am not letting this demon get any stronger than it already is. I'm glad that my story has been inspirational to some of you. I just couldn't believe it when I was first told I had cancer, let alone ovarian cancer since I no longer had ovaries. Who would have thought that was possible. I now understand that the original cancer can reoccur almost anywhere in the body and still be genetically the same as the original. I find this is facinating and scarry at the same time!

    Honestly, would you have
    Honestly, would you have known what to do to prevent cancer reoccurrence? We didnt have the Internet 25 years ago and no one still really understands ovarian cancer. If your cancer was brought on because of hormone replacement therapy, it would have showed up a lot sooner.

    You will probably do really well with the treatment and have a good chance of going into remission again.

    You had 25 years of not having the anxiety of worrying that your cancer could return. There is something to be said for that.
  • dgalaxy
    dgalaxy Member Posts: 11
    #9
    carolenk said:

    Honestly, would you have
    Honestly, would you have known what to do to prevent cancer reoccurrence? We didnt have the Internet 25 years ago and no one still really understands ovarian cancer. If your cancer was brought on because of hormone replacement therapy, it would have showed up a lot sooner.

    You will probably do really well with the treatment and have a good chance of going into remission again.

    You had 25 years of not having the anxiety of worrying that your cancer could return. There is something to be said for that.

    Update
    So, I got my second opinion. I was told that I'm an UNUSUAL case. I had a 'borderline' diagnosis 25 years ago. I now have a metastis ovarian serous carcinoma with invasive agressive behavor. So Chemo is the treatment of choice. What is unusually is to have a Borderline come back as a full blown cancer. We had a laugh at this though, since my hubby was with me when the doctor said I'm an unusual case. Hubby said "I could have told you she was unusual"! The doctor even had to laugh. It seems the consensis is I should have a good outcome with the treatment.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #10
    dgalaxy said:

    Update
    So, I got my second opinion. I was told that I'm an UNUSUAL case. I had a 'borderline' diagnosis 25 years ago. I now have a metastis ovarian serous carcinoma with invasive agressive behavor. So Chemo is the treatment of choice. What is unusually is to have a Borderline come back as a full blown cancer. We had a laugh at this though, since my hubby was with me when the doctor said I'm an unusual case. Hubby said "I could have told you she was unusual"! The doctor even had to laugh. It seems the consensis is I should have a good outcome with the treatment.

    Just a thought
    After everything I've read about ovarian cancer, I think your two cancers are not related. There are reports of women who have had prophylactic hysterectomy/oophorectomy because of family history of ovarian cancer--and they get "ovarian cancer" anyway. Peritoneal cancer is basically the same as ovarian cancer. I'm thinking this because your first cancer was not aggressive but the second cancer is.

    I am so sorry you have to go down the chemo road. The good news is that you have already had surgery a long time ago.
  • dgalaxy
    dgalaxy Member Posts: 11
    #11
    LaundryQueen said:

    Just a thought
    After everything I've read about ovarian cancer, I think your two cancers are not related. There are reports of women who have had prophylactic hysterectomy/oophorectomy because of family history of ovarian cancer--and they get "ovarian cancer" anyway. Peritoneal cancer is basically the same as ovarian cancer. I'm thinking this because your first cancer was not aggressive but the second cancer is.

    I am so sorry you have to go down the chemo road. The good news is that you have already had surgery a long time ago.

    I went to get a second
    I went to get a second opinion and that doctor concurred with the first, but he did recommend to get a second opinion on the pathologist report. So, I hope I can get that done as well. When I had my hysorectomy it was complete, including the uterus, both overies, appendix, and omedum. I don't think anything was lwft but the vagina and the external genitalia. There was some mention of some implants on the diaphragm but liver and upper abdemen were clean. So, where would a new occurance come from?
  • carolenk
    carolenk Member Posts: 907 Member
    #12
    dgalaxy said:

    I went to get a second
    I went to get a second opinion and that doctor concurred with the first, but he did recommend to get a second opinion on the pathologist report. So, I hope I can get that done as well. When I had my hysorectomy it was complete, including the uterus, both overies, appendix, and omedum. I don't think anything was lwft but the vagina and the external genitalia. There was some mention of some implants on the diaphragm but liver and upper abdemen were clean. So, where would a new occurance come from?

    The outside lining of the
    The outside lining of the ovaries is continuous with the peritoneum. So even when the ovaries are gone, the peritoneum can turn cancerous. The implants on the diaphragm are typical with peritoneal cancer--which is pretty much the same as ovarian cancer. Men can get peritoneal cancer; it's a rare cancer.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #13
    carolenk said:

    The outside lining of the
    The outside lining of the ovaries is continuous with the peritoneum. So even when the ovaries are gone, the peritoneum can turn cancerous. The implants on the diaphragm are typical with peritoneal cancer--which is pretty much the same as ovarian cancer. Men can get peritoneal cancer; it's a rare cancer.

    Perioneal Cancer
    Carolen,
    Do you know whether women who have prophylactic ooperectomies to reduce their risk of ovarian cancer still have an equal amount of risk for peritoneal cancer?

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