signs of recurrence

sunflash
sunflash Member Posts: 197 Member
in Uterine/Endometrial Cancer #1
Hi all,

I'm basically new to this board, and apologize if this has been discussed already.

I'm diagnosed with UPSC, stage 1 or 2, to my oncologists best judgement. No lymph nodes were sampled, but scans are clear and nothing detected in pelvic wash. When my hysterectomy was performed,(including the fallopian tubes and ovaries) the cancer was discovered (1.5 cm) embedded between the inner and outer layers of my uterus. I'm presently having chemo, taxol/carboplatin, and just finished my 3rd round. I'm a teacher and still teaching, but I have 2 fantastic subs lined up, one of which is my very own sister, who is a retired teacher. I'm taking off 3 days for every treatment, which is on Thursday, so have an additional 2 days at home while I'm coming down from chemo.

My question is......I see many women here have recurrences. I'm wondering if there very many that don't......I'm not finding any information online that can tell me that! I'm also wondering what symptoms did you have that pointed to a recurrence, or are there none? I had no symptoms at all for this cancer, other than atypical uterine cells that showed up in my pap smear. My wonderful gyn/onc felt a hysterectomy was in order, because even though the tests showed no indication of cancer, she felt the atypical cells would turn into cancer if left alone. She examined the uterus after the hysterectomy and said both inner and outer layers were smooth, so she felt sure there was no cancer. She was only slightly less shocked than I was (her words) to discover cancer after the pathology report.

Thank you in advance for any replies.

Comments

  • JoAnnDK
    JoAnnDK Member Posts: 275
    #2
    surveillance for recurrence
    Hi, Sunflash......I know much less about this than many of the others here, but my doctors have pretty much told me that I am "in charge" of detecting a recurrence, especially if it is in between the CT or PET scans. CA125 is not always a reliable tool with UPSC. CT scans only show enlarged lymph nodes if they are a certain size. So we are told to report any pain, bleeding, discharge to our doctors.

    You are very lucky you had a hysterectomy as early as you did. My gyn should have done the same for me. Unfortunately, she did not — and by the time my cancer was discovered it was stage IIIc. I also had no symptoms except for a little discharge, which I had had 5 times before. Each time, I had an endometrial biopsy. All were negative until the one I had last June. Needless to say, my gyn is not longer my doctor.

    That is a great arrangement you have for your substitutes and good for you, being able to still teach during chemo. What grade do you teach?
  • Rewriter
    Rewriter Member Posts: 493 Member
    #3
    Yes! A number of women here have not had a recurrence
    Please try to remain hopeful. A number of us were diagnosed with UPSC years ago and are still recurrence free. For now, I would suggest focusing on getting through treatment, keeping up your strength with diet and exercise, and getting support from family and friends and the women on this board.

    Best of luck to you.
  • sunflash
    sunflash Member Posts: 197 Member
    #4
    Rewriter said:

    Yes! A number of women here have not had a recurrence
    Please try to remain hopeful. A number of us were diagnosed with UPSC years ago and are still recurrence free. For now, I would suggest focusing on getting through treatment, keeping up your strength with diet and exercise, and getting support from family and friends and the women on this board.

    Best of luck to you.

    Good to hear!
    Thanks ladies.........I teach 5th grade which I love. I've taught for 25 years, and working has kept me sane. It gives me less time to focus on ME and my problems. My school and coworkers have been very supportive.

    It's good to hear, Rewriter, that others have survived this. I can't seem to find that information anywhere. And I'm also through looking/searching the internet. It only scares me to read all that is out there.
  • minniejan
    minniejan Member Posts: 88
    #5
    sunflash said:

    Good to hear!
    Thanks ladies.........I teach 5th grade which I love. I've taught for 25 years, and working has kept me sane. It gives me less time to focus on ME and my problems. My school and coworkers have been very supportive.

    It's good to hear, Rewriter, that others have survived this. I can't seem to find that information anywhere. And I'm also through looking/searching the internet. It only scares me to read all that is out there.

    ned
    I was diagnosed with stage 1 USPC Dec. 2010 and have been NED for three months now, so I am also following your post with much interest. I did have some warning signs last fall, basically bleeding - after menopause. And right now I am having the same symptoms again, some slight bleeding, (hoping it is from upgrading the size of a dialator which my doctor recommended) but will be going for more testing early next week. I was told that bleeding was once again the main warning sign, along with low back pain, which I also have. I find there are so many different stories for the same diagnosis, that is why I find this website so important.
    MinnieJan
  • Rewriter
    Rewriter Member Posts: 493 Member
    #6
    minniejan said:

    ned
    I was diagnosed with stage 1 USPC Dec. 2010 and have been NED for three months now, so I am also following your post with much interest. I did have some warning signs last fall, basically bleeding - after menopause. And right now I am having the same symptoms again, some slight bleeding, (hoping it is from upgrading the size of a dialator which my doctor recommended) but will be going for more testing early next week. I was told that bleeding was once again the main warning sign, along with low back pain, which I also have. I find there are so many different stories for the same diagnosis, that is why I find this website so important.
    MinnieJan

    MinnieJan
    There have been several posts on this board from women who had bleeding in the months or years following brachytherapy treatment and who after examination were told it was from the thinning of the vaginal walls that resulted from the treatment. My hunch is that you will be told the same thing, particularly since you upgraded to a larger dilator.

    Good luck to you, and try not to worry.

    Hugs,

    Jill
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #7
    Rewriter said:

    MinnieJan
    There have been several posts on this board from women who had bleeding in the months or years following brachytherapy treatment and who after examination were told it was from the thinning of the vaginal walls that resulted from the treatment. My hunch is that you will be told the same thing, particularly since you upgraded to a larger dilator.

    Good luck to you, and try not to worry.

    Hugs,

    Jill

    I never had a single physical cancer symptom.
    I had NO symptoms before my cancer was diagnosed, and honestly had NO symptoms at all as my cancer recurred and progressed for the 3 years of my cancer journey. I always said, "I'd never know I had cancer if I didn't have the scans and biopsies to prove it." Even when my cancer metasticized to my liver and took over HALF of it, I still couldn't tell you exactly where in my body the liver was located; I couldn't feel it at all. Only very recently (the last couple of weeks) I've had a sudden weight loss, in spite of eating a LOT, that may be my 1st physical symptom of cancer so far. (Or it may be a reaction to the radioembolism I had 3 weeks ago.) But I would say, in general, that our cancer is a very sneaky silent one.

    But, as far as the slight vaginal bleeding, I agree with Jill. I rushed in to be examined when I had a similar blood spot on my toilet paper close to 2 years ago, and it was nothing but thinning fragile easily-torn vaginal tissue that happens from the lack of estrogen and progesterone after our hysterectomies and brachy therapy. I had an assay that showed my cancer was ER- and PR-, so my gyne-onc prescribed a hormone cream for me to use that works BEAUTIFULLY to keep vaginal tissue less fragile. It is controversial whether there is a risk here (my gyne-onc says it's not risky for ER-/PR- cancers), but it's a quality of life trade-off for me, and I've never had any bleeding or questional internal exams since using it this long.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #8
    Sunflash I never had symptoms either
    I never had any symptoms when I was diagnosed with Stage III-C UPSC. I had an abnormal pap test. The doctors felt a hysterectomy would take care of the abnormal cells. It was a shock to get the final diagnosis.

    I too had a recurrence and had not symptoms. It is the lab and CAT scan reports that indicated a recurrence in the lymph nodes. I just completed my second round of 7 chemo sessions the end of June. Unfortunately my CA 125 is beginning to rise again. I have no symptoms again. I will continue to be monitored and see when the next round of chemo will be needed.

    Good luck with your chemo treatments. Being stage 1 or 2 probably means you have less chance of recurrence. Take care of yourself and rest when needed. In peace and caring.
  • RoseyR
    RoseyR Member Posts: 471 Member
    #9
    minniejan said:

    ned
    I was diagnosed with stage 1 USPC Dec. 2010 and have been NED for three months now, so I am also following your post with much interest. I did have some warning signs last fall, basically bleeding - after menopause. And right now I am having the same symptoms again, some slight bleeding, (hoping it is from upgrading the size of a dialator which my doctor recommended) but will be going for more testing early next week. I was told that bleeding was once again the main warning sign, along with low back pain, which I also have. I find there are so many different stories for the same diagnosis, that is why I find this website so important.
    MinnieJan

    Probably no need for worry ....

    MinnieJan,

    A lot of the reading I've done suggests that your bleeding was caused by dilator/brachytherapy, especially if you've just upgraded the size of the dilator.

    As I'm being treated where you are (HUP?), wonder how long it was before they recommended the upgrade.
    (Can't say that the dilator I'm using causes "pain" or even much discomfort, but can't imagine using a larger one!)

    Keep us posted on how you're doing and try--hard as it is--not to worry unduly.

    Best,
    Rosey
  • RoseyR
    RoseyR Member Posts: 471 Member
    #10
    minniejan said:

    ned
    I was diagnosed with stage 1 USPC Dec. 2010 and have been NED for three months now, so I am also following your post with much interest. I did have some warning signs last fall, basically bleeding - after menopause. And right now I am having the same symptoms again, some slight bleeding, (hoping it is from upgrading the size of a dialator which my doctor recommended) but will be going for more testing early next week. I was told that bleeding was once again the main warning sign, along with low back pain, which I also have. I find there are so many different stories for the same diagnosis, that is why I find this website so important.
    MinnieJan

    Probably no need for worry ....

    MinnieJan,

    A lot of the reading I've done suggests that your bleeding was caused by dilator/brachytherapy, especially if you've just upgraded the size of the dilator.

    As I'm being treated where you are (HUP?), wonder how long it was before they recommended the upgrade.
    (Can't say that the dilator I'm using causes "pain" or even much discomfort, but can't imagine using a larger one!)

    Keep us posted on how you're doing and try--hard as it is--not to worry unduly.

    Best,
    Rosey
  • RoseyR
    RoseyR Member Posts: 471 Member
    #11
    minniejan said:

    ned
    I was diagnosed with stage 1 USPC Dec. 2010 and have been NED for three months now, so I am also following your post with much interest. I did have some warning signs last fall, basically bleeding - after menopause. And right now I am having the same symptoms again, some slight bleeding, (hoping it is from upgrading the size of a dialator which my doctor recommended) but will be going for more testing early next week. I was told that bleeding was once again the main warning sign, along with low back pain, which I also have. I find there are so many different stories for the same diagnosis, that is why I find this website so important.
    MinnieJan

    Probably no need for worry ....

    MinnieJan,

    A lot of the reading I've done suggests that your bleeding was caused by dilator/brachytherapy, especially if you've just upgraded the size of the dilator.

    As I'm being treated where you are (HUP?), wonder how long it was before they recommended the upgrade.
    (Can't say that the dilator I'm using causes "pain" or even much discomfort, but can't imagine using a larger one!)

    Keep us posted on how you're doing and try--hard as it is--not to worry unduly.

    Best,
    Rosey
  • RoseyR
    RoseyR Member Posts: 471 Member
    #12
    minniejan said:

    ned
    I was diagnosed with stage 1 USPC Dec. 2010 and have been NED for three months now, so I am also following your post with much interest. I did have some warning signs last fall, basically bleeding - after menopause. And right now I am having the same symptoms again, some slight bleeding, (hoping it is from upgrading the size of a dialator which my doctor recommended) but will be going for more testing early next week. I was told that bleeding was once again the main warning sign, along with low back pain, which I also have. I find there are so many different stories for the same diagnosis, that is why I find this website so important.
    MinnieJan

    Probably no need for worry ....

    MinnieJan,

    A lot of the reading I've done suggests that your bleeding was caused by dilator/brachytherapy, especially if you've just upgraded the size of the dilator.

    As I'm being treated where you are (HUP?), wonder how long it was before they recommended the upgrade.
    (Can't say that the dilator I'm using causes "pain" or even much discomfort, but can't imagine using a larger one!)

    Keep us posted on how you're doing and try--hard as it is--not to worry unduly.

    Best,
    Rosey
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #13
    Ro10 said:

    Sunflash I never had symptoms either
    I never had any symptoms when I was diagnosed with Stage III-C UPSC. I had an abnormal pap test. The doctors felt a hysterectomy would take care of the abnormal cells. It was a shock to get the final diagnosis.

    I too had a recurrence and had not symptoms. It is the lab and CAT scan reports that indicated a recurrence in the lymph nodes. I just completed my second round of 7 chemo sessions the end of June. Unfortunately my CA 125 is beginning to rise again. I have no symptoms again. I will continue to be monitored and see when the next round of chemo will be needed.

    Good luck with your chemo treatments. Being stage 1 or 2 probably means you have less chance of recurrence. Take care of yourself and rest when needed. In peace and caring.

    thinning
    Thinning of the vaginal walls is common after menopause and with age, whether one has had brachytherapy or not. I have several friends who have used Premarin for this problem - but none have had any radiation therapy.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #14
    Ro10 said:

    Sunflash I never had symptoms either
    I never had any symptoms when I was diagnosed with Stage III-C UPSC. I had an abnormal pap test. The doctors felt a hysterectomy would take care of the abnormal cells. It was a shock to get the final diagnosis.

    I too had a recurrence and had not symptoms. It is the lab and CAT scan reports that indicated a recurrence in the lymph nodes. I just completed my second round of 7 chemo sessions the end of June. Unfortunately my CA 125 is beginning to rise again. I have no symptoms again. I will continue to be monitored and see when the next round of chemo will be needed.

    Good luck with your chemo treatments. Being stage 1 or 2 probably means you have less chance of recurrence. Take care of yourself and rest when needed. In peace and caring.

    duplicate comment - sorry
    I cannot get to the DELETE button, site just freezes up
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #15
    Ro10 said:

    Sunflash I never had symptoms either
    I never had any symptoms when I was diagnosed with Stage III-C UPSC. I had an abnormal pap test. The doctors felt a hysterectomy would take care of the abnormal cells. It was a shock to get the final diagnosis.

    I too had a recurrence and had not symptoms. It is the lab and CAT scan reports that indicated a recurrence in the lymph nodes. I just completed my second round of 7 chemo sessions the end of June. Unfortunately my CA 125 is beginning to rise again. I have no symptoms again. I will continue to be monitored and see when the next round of chemo will be needed.

    Good luck with your chemo treatments. Being stage 1 or 2 probably means you have less chance of recurrence. Take care of yourself and rest when needed. In peace and caring.

    another duplicate
    I can edit but not delete. Sorry again
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #16
    JoAnnDK said:

    another duplicate
    I can edit but not delete. Sorry again

    avoiding duplicate posts.
    The best way I've found to eliminate duplicates is - after posting your comment, scroll to top and click "uterine cancer" which will bring you back to all the threads.
  • jazzy1
    jazzy1 Member Posts: 1,379
    #17
    daisy366 said:

    avoiding duplicate posts.
    The best way I've found to eliminate duplicates is - after posting your comment, scroll to top and click "uterine cancer" which will bring you back to all the threads.

    MinnieJan
    I as well had some vaginal spotting as found one morning on the toilet paper. I just flipped out as this was what I encountered when was diagnosed with cancer...boohoo! Talked about it during the morning and as the day went on there was no more spotting, but I knew I should see my oncologist. Made the appt and discussed with him at appt. He did a physical exam and didn't see anything abnormal, but was doing a PAP to be on safe side. All is well as nothing was found.

    One thing he did mention, since I had pelvic radiation, sometimes bits of the lining of the uterine wall discharge and/or the dilator can cause bleeding. In the end, we figured it was from my hemorrhoids that I acquired during child birth some 19 years ago.

    Hope all is well...plse come back and post how you're doing...we do care!!
    Jan

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