Bleeding as a symptom of a recurrence

lindaprocopio
lindaprocopio Member Posts: 1,980
edited March 2014 in Uterine Cancer #1
I started this thread, not because I have a real opinion yet, but because I will soon, and want to get the discussion going.

As many of you know, I am currently on a tenuous break from chemo, following a SURPRISE clear CT/PET I had in mid-February that was supposed to let us know what was going on mid-way through what was originally going to be 20 rounds of weekly taxol for a suspected recurrence. (Chemo given at 1/3 strength but every week.) So after just 10 of the planned 20 rounds, my gyne-oncologist felt I could (and should) safely take a break from chemo. 8 weeks into my chemo break I had a routine CA125 drawn (because my port needed flushed anyway) and my CA125 dropped 8 points on its own without chemo, down now to 34.6.

Then I started having a pinkish tinge on my toilet paper every 7 to 10 days, never any blood on my underwear or running out into the toilet or anything, and then days and days of NOTHING, but just this worrisome 'pink' every 7 to 10 days. I told my chemo-onc and he said they'd keep an eye on it, but didn't seem concerned. Then it got to be about every 4 or 5 days I'd see something pink, and 1 day last week I had an actual small spot of blood on my underpants. This morning when I urinated, it was red when I wiped. And when I used my dilator this morning there was a drop of blood on the very tip of it when I withdrew it, so I know the bleeding is vaginal. I phoned and made an appointment for Monday for an internal exam. Prior to all this I'd already been scheduled for a CT/PET on May 17th and an appointment with my gyne-onc to review that scan on May 24th.

So, since some of you that are in remission may one day find yourself with spotting, I wanted to get a thread started so I can let you know what I find out. The oncology nurse reasurred me that this could very easily be a result of fragile tissue from radiation damage, which sometimes occurs long after bracy or external radiation. Or it could be something worse. She said that maybe the exam would allow me to put my mind at ease until the CT/PET. I hope so. It was hard not to cry when I saw that blood this morning.
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Comments

  • culka
    culka Member Posts: 149 Member
    I`m too lazy to call my
    I`m too lazy to call my family doctor about blood drops. It is usually occurred after sex. They never gave me dilator and when I asked, I was told you don`t need one (25 external + 3 brachy). True is, that during radiation I was using herbs and royal jelly with ginseng and lots of vitamins and I never had diarrhea or any usual problems.
    Somewhere in Canadian study from Hamilton, Ontario, I read about using dilator only during treatment. I never had one and we are fragile there, so maybe Linda don`t use it for a while.
  • howdybooth
    howdybooth Member Posts: 42
    Spotting
    My sister too starting spotting after her hysterectomy. It started about 5 months after the surgery. Because her staging and grade was so low, she didn't have chemo or radiation. The spotting turned out to be her first reoccurance of the uterine cancer on the vaginal cuff - which we discovered is very common place for it to return. So the sooner you go in the better!
  • jazzy1
    jazzy1 Member Posts: 1,379

    Spotting
    My sister too starting spotting after her hysterectomy. It started about 5 months after the surgery. Because her staging and grade was so low, she didn't have chemo or radiation. The spotting turned out to be her first reoccurance of the uterine cancer on the vaginal cuff - which we discovered is very common place for it to return. So the sooner you go in the better!

    Hang in there!
    Linda,

    Oh I'm sure you're going crazy with mind thoughts. It would be me, seeing the worst. I have been so lucky with no spotting but believe you me, each appt I go to they always confirm NO SPOTTING OR BLEEDING AT ALL???? NO~

    I'm sure it's fine and don't know if the dilator can cause that spotting. I have one but can't say I'm EVERY DAY USER as you are now. Good time to visit the doctor.

    Glad you started this thread as love to keep up on your progress. You're in my prayers and thoughts...

    Jan
  • shortmarge
    shortmarge Member Posts: 291

    Spotting
    My sister too starting spotting after her hysterectomy. It started about 5 months after the surgery. Because her staging and grade was so low, she didn't have chemo or radiation. The spotting turned out to be her first reoccurance of the uterine cancer on the vaginal cuff - which we discovered is very common place for it to return. So the sooner you go in the better!

    Spotting
    I had spotting once but... since you and I went through everything about the same time, I am right now feeling the neuropathy and metal taste in my mouth along with my vagina really aching again. It hasn't in several, several months. I feel like I did about 8 months ago. I go to see my oncol tomorrow for my next three month and going to ask lots of questions.

    Like she's going to give me any real answers... :)
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Spotting
    I had spotting once but... since you and I went through everything about the same time, I am right now feeling the neuropathy and metal taste in my mouth along with my vagina really aching again. It hasn't in several, several months. I feel like I did about 8 months ago. I go to see my oncol tomorrow for my next three month and going to ask lots of questions.

    Like she's going to give me any real answers... :)

    ((((Marge))))). Good luck tomorrow!
    You've made it so long without a recurrence that I really think you are in the clear, Marge. Seems like if you had a 'superman cancer' like mine and like Fran's, that wins out even after radiation and chemo, that it would have come roaring back before now.

    But isn't it wierd how SIDE EFFECTS show up so loooooonnng after the treatments? Just when you thought you got away clean with no lasting damage.....

    Please let me know how you make out. I honestly WANT this bleeding to be a side effect; anything but cancer down there. ARGH! That would suck. (((Marge)))
  • thank you
    thank you Member Posts: 77

    ((((Marge))))). Good luck tomorrow!
    You've made it so long without a recurrence that I really think you are in the clear, Marge. Seems like if you had a 'superman cancer' like mine and like Fran's, that wins out even after radiation and chemo, that it would have come roaring back before now.

    But isn't it wierd how SIDE EFFECTS show up so loooooonnng after the treatments? Just when you thought you got away clean with no lasting damage.....

    Please let me know how you make out. I honestly WANT this bleeding to be a side effect; anything but cancer down there. ARGH! That would suck. (((Marge)))

    But we read all over, that
    But we read all over, that after radiation treatment, esp combined pelvic radiation and brachytherapy, local recurrence is very rare. We also know the many late side effects of radiation.
    Think positive, that this is one of the remote side effects. You have said before, that you never had any symptoms from recurrence, but most were coming from treatment. This will be one more...
    All this while I am on the edge waiting for the result of Ca 125 of my mom. Dying from stress....

    Good luck to all of you
    Chrysoula
  • california_artist
    california_artist Member Posts: 816 Member
    So sorry to hear all that, especially the tears.
    I had actual bleeding only two times. Both were after I ate meat, which I so seldom do. I figured that the type of cancer I had was most likely hormone receptive and I had just fed it something it really liked. As it turned out, nearly 60% of my cancer was the regular cancer, not UPSC. so the meat was food for it.
    Are you trying ever so hard to keep your foods on the alkaline side of the food chart? Have lots of lemon in filtered water and oodles of green tea, garlic, turmeric with black pepper. Try avoiding all milk products, meats, coffees, soda, all thos acid creating things. Hopefully it's just a small tear that is causing the bleeding.
    Let us know how it goes on the morrow.

    Love you,

    claudia
  • So sorry to hear all that, especially the tears.
    I had actual bleeding only two times. Both were after I ate meat, which I so seldom do. I figured that the type of cancer I had was most likely hormone receptive and I had just fed it something it really liked. As it turned out, nearly 60% of my cancer was the regular cancer, not UPSC. so the meat was food for it.
    Are you trying ever so hard to keep your foods on the alkaline side of the food chart? Have lots of lemon in filtered water and oodles of green tea, garlic, turmeric with black pepper. Try avoiding all milk products, meats, coffees, soda, all thos acid creating things. Hopefully it's just a small tear that is causing the bleeding.
    Let us know how it goes on the morrow.

    Love you,

    claudia

    This comment has been removed by the Moderator
  • kansasgal
    kansasgal Member Posts: 122 Member
    ((Linda)) - You know what a worrier I am - ((Hi, Marge))
    ((Dear, Dear Linda))

    You know what a worrier I am, but I definitely would not shrug off a tiny bit of spotting. A tiny bit of spotting (one drop/week of a creamy pinkish tan color) was my original tip-off to uterine cancer. Other than that I was symptom free. I'm so glad you are going in for a "look-see".

    I will be watching for your post afterward as will many women who only follow the board but never post. Your concern has been on my mind ever since your first post about it.

    ((Hi, Marge!))

    I'm such a basket case before those important check-ups. We're all rooting for a continuation of NED for you!

    Sally
  • moonchild49
    moonchild49 Member Posts: 1
    kansasgal said:

    ((Linda)) - You know what a worrier I am - ((Hi, Marge))
    ((Dear, Dear Linda))

    You know what a worrier I am, but I definitely would not shrug off a tiny bit of spotting. A tiny bit of spotting (one drop/week of a creamy pinkish tan color) was my original tip-off to uterine cancer. Other than that I was symptom free. I'm so glad you are going in for a "look-see".

    I will be watching for your post afterward as will many women who only follow the board but never post. Your concern has been on my mind ever since your first post about it.

    ((Hi, Marge!))

    I'm such a basket case before those important check-ups. We're all rooting for a continuation of NED for you!

    Sally

    vaginal bleeding/spotting
    I just passed 36 months post treatment (chemo, localized radiation, and brachytherapy) and still have the kind of bleeding you've described. As others have mentioned, the doc says it's caused by fragile tissues, not to worry. Having a routine CT tomorrow as part of my 6 month follow up appointment. Even 36 months out we still stress a bit until we get good reports.
    Stay positive!
  • MoeKay
    MoeKay Member Posts: 403 Member

    vaginal bleeding/spotting
    I just passed 36 months post treatment (chemo, localized radiation, and brachytherapy) and still have the kind of bleeding you've described. As others have mentioned, the doc says it's caused by fragile tissues, not to worry. Having a routine CT tomorrow as part of my 6 month follow up appointment. Even 36 months out we still stress a bit until we get good reports.
    Stay positive!

    Linda,
    I finished treatment

    Linda,

    I finished treatment for EC in August 1999. Over the years I have experienced vaginal bleeding on a number of occasions after my gyn-onc does a Pap test. I knew I asked him about this issue and found my notes (from April 2000, if you can believe it!) which state that bleeding as the result of a Pap happens from time to time. According to my notes, my gyn-onc said that I shouldn't worry about it, but if it increases to let him know. I seem to recall some occasional bleeding over the years after using the dilator as well.

    I'm placing my bets on the effects of radiation as the cause of your vaginal bleeding. I'm glad you're getting it checked out so that you will be able to put your mind at ease. Worrying about these cancer issues is really the pits.

    All the best,

    MoeKay
  • fuzzytrouble
    fuzzytrouble Member Posts: 212

    Spotting
    I had spotting once but... since you and I went through everything about the same time, I am right now feeling the neuropathy and metal taste in my mouth along with my vagina really aching again. It hasn't in several, several months. I feel like I did about 8 months ago. I go to see my oncol tomorrow for my next three month and going to ask lots of questions.

    Like she's going to give me any real answers... :)

    Spotting
    Marge I was wondering how you were doing and bam here you are. I was hoping that all things were going great. I hope it's just a weird event happening and it will be nothing. The neuropathy can come at anytime after chemo treatments, mine has never gone away and now being on Doxil I have it in both feet now. My taste buds come and go and act really strange at some of the foods I eat. I just hope they tell you what's going on tomorrow. When was your last ct scan?

    Hugs to you,
    Sharon
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    MoeKay said:

    Linda,
    I finished treatment

    Linda,

    I finished treatment for EC in August 1999. Over the years I have experienced vaginal bleeding on a number of occasions after my gyn-onc does a Pap test. I knew I asked him about this issue and found my notes (from April 2000, if you can believe it!) which state that bleeding as the result of a Pap happens from time to time. According to my notes, my gyn-onc said that I shouldn't worry about it, but if it increases to let him know. I seem to recall some occasional bleeding over the years after using the dilator as well.

    I'm placing my bets on the effects of radiation as the cause of your vaginal bleeding. I'm glad you're getting it checked out so that you will be able to put your mind at ease. Worrying about these cancer issues is really the pits.

    All the best,

    MoeKay

    Thank you all for your insights and opinions and love.
    I am much reassured by your posts; thank you so much. I will let you know how I make out on Monday after my pelvic exam, although I know I won't have anything definitive until after my CT/PET on the 17th. There is very little on the web about this, so I'm glad we have started this thread here. I think all the time, when I am posting here, about the resource we are all creating for those who come after us, women terrified after getting their initial diagnosis and looking for answers. Even if any of us stops posting, our experiences and caring linger here waiting to comfort and educate someeone else. Thank you.
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Thank you all for your insights and opinions and love.
    I am much reassured by your posts; thank you so much. I will let you know how I make out on Monday after my pelvic exam, although I know I won't have anything definitive until after my CT/PET on the 17th. There is very little on the web about this, so I'm glad we have started this thread here. I think all the time, when I am posting here, about the resource we are all creating for those who come after us, women terrified after getting their initial diagnosis and looking for answers. Even if any of us stops posting, our experiences and caring linger here waiting to comfort and educate someeone else. Thank you.

    insights/opinions/love

    linda,

    truly, you are one of the major resources on this site, and i've so appreciated it. in terms of bleeding, i haven't had bleeding post surgery, however i've certainly heard of others who have, and it was invariable something other than recurrence. maybe you won't have anything definitive until the 17th, but i know alot can be seen by an internal exam, so you should learn something that i'm sure will be relieving. hoping for the best for you.
    maggie
  • shortmarge
    shortmarge Member Posts: 291

    insights/opinions/love

    linda,

    truly, you are one of the major resources on this site, and i've so appreciated it. in terms of bleeding, i haven't had bleeding post surgery, however i've certainly heard of others who have, and it was invariable something other than recurrence. maybe you won't have anything definitive until the 17th, but i know alot can be seen by an internal exam, so you should learn something that i'm sure will be relieving. hoping for the best for you.
    maggie

    Oncol Visit
    Well my questions got me a CT scan.... Hooray!!!! I've been having pain in my hip also, I think it's just arthritis but she didn't like where I was pointing. My exam looked good though, and will have my CA125 results tomorrow. Not worried.

    MIND, BODY AND SOUL

    Hugs,

    Marge
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Oncol Visit
    Well my questions got me a CT scan.... Hooray!!!! I've been having pain in my hip also, I think it's just arthritis but she didn't like where I was pointing. My exam looked good though, and will have my CA125 results tomorrow. Not worried.

    MIND, BODY AND SOUL

    Hugs,

    Marge

    Marge: get your CA125 results?
    I popped in to see if you posted your CA125 results. Don't be surprised or worried if it goes up a few points if you are having pain, as any inflammation could spike it up a little. But let us know how you made out. ((((Marge))))
  • shortmarge
    shortmarge Member Posts: 291

    Marge: get your CA125 results?
    I popped in to see if you posted your CA125 results. Don't be surprised or worried if it goes up a few points if you are having pain, as any inflammation could spike it up a little. But let us know how you made out. ((((Marge))))

    CA125 Results
    12.26!!!! Holding steady!
  • Songflower
    Songflower Member Posts: 608

    Thank you all for your insights and opinions and love.
    I am much reassured by your posts; thank you so much. I will let you know how I make out on Monday after my pelvic exam, although I know I won't have anything definitive until after my CT/PET on the 17th. There is very little on the web about this, so I'm glad we have started this thread here. I think all the time, when I am posting here, about the resource we are all creating for those who come after us, women terrified after getting their initial diagnosis and looking for answers. Even if any of us stops posting, our experiences and caring linger here waiting to comfort and educate someeone else. Thank you.

    Vaginal Bleeding
    Our post menopausal tissues get so thin that bleeding after intercourse is not unususal. Add in radiation and they thin even more. I think with all of the radiation you had this is most likely atrophic bleeding from friction. We just get so scared when anything changes.

    Diane
  • kkstef
    kkstef Member Posts: 688

    CA125 Results
    12.26!!!! Holding steady!

    Wonderful news!
    Great news! Take a deep breath and keep dancing! I am so happy for you!

    Karen
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Vaginal Bleeding
    Our post menopausal tissues get so thin that bleeding after intercourse is not unususal. Add in radiation and they thin even more. I think with all of the radiation you had this is most likely atrophic bleeding from friction. We just get so scared when anything changes.

    Diane

    Linda,
    I am just now reading this thread. I'm so sorry you are experiencing more surprises and stress. I hope, like many have said that this is "normal". Good luck with your appointment and next PET - I am praying for a dark picture - no lights for you, lady!!!

    Hugs and prayers to you. Mary Ann