reacurrance maybe?
Comments
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Praying
Dear Laura, I will be praying that you get answers and they will not be so scary. I don't pay much attention to being in remission. Right now I am focussed on keeping the CA125 stable at around 50. That has changed since I had a count below 10 for about 6 months. Only God knows our prognosis and when it will come. I get a CT scan every 3 months and the last three have been clear but the numbers got above 10 on the blood tests. I only get a exam every 2 months and so far they are clear. I have been off Taxol since Sept. 2 and my CA125 started rising before then. God Bless you with peace and calmness and hugs to you.
Saundra0 -
Vaginal Cuff Tumor or Atrophy
Dearest Laura,
It could be atrophy too, we all suffer from it because of lack of estrogen. I know I dealt with a lot of vaginal pain during exams before I had a vaginal tumor. I am praying that is all it is, and also lifting your prayer request for having more faith and relaxing. Relax in God's Love ~ Peace ~ Grace
God Bless Bonnie0 -
Praying
Hi Laura, Bonnie could be right about the lack of estrogen. I know I suffer from that.My numbers are climbing and I have one more treatment of Doxil.Please try not to worry, easier said than done. I will be saying extra prayers for you.
Hugs and Prayers, Terry0 -
hope you are feeling well.....ladyjogger31 said:Praying
Hi Laura, Bonnie could be right about the lack of estrogen. I know I suffer from that.My numbers are climbing and I have one more treatment of Doxil.Please try not to worry, easier said than done. I will be saying extra prayers for you.
Hugs and Prayers, Terry
emotionally and physically. I will be praying for you
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COUNT ME IN WITH PRAYERS, TOO!
Dear Laura:
Even faith the size of a 'grain of mustard seed' (and that's veerrryy small!) is enough faith. But we will support you with our faith and prayers in agreeing that the Lord will be in control in this situation. And that whatever the situation, He will provide the strength and wisdom to handle it.
Having said that, I agree with Bonnie that this could be related to atrophy. Mine is so severe, that sometimes even walking around or wearing clothing can be uncomfortable. A very unfortunate side effect of limited estrogen in my body. But, estrogen is certainly a 'no-no' for me.
Let us know what you find out. I know how you feel about wanting to be here for your family. That's always been my biggest concern, especially now since we just had our first grandchild in January! Seeing Caleb for the first time re-cemented the knowledge that life goes on and God is good! And I feel that way each and everytime I see him. So, hang on to the Lord's promises, and that He will never leave you or forsake you. And lean on our shoulders anytime you need to.
Luv & Hugs & Prayers!
Monika0 -
thankyou everyonemopar said:COUNT ME IN WITH PRAYERS, TOO!
Dear Laura:
Even faith the size of a 'grain of mustard seed' (and that's veerrryy small!) is enough faith. But we will support you with our faith and prayers in agreeing that the Lord will be in control in this situation. And that whatever the situation, He will provide the strength and wisdom to handle it.
Having said that, I agree with Bonnie that this could be related to atrophy. Mine is so severe, that sometimes even walking around or wearing clothing can be uncomfortable. A very unfortunate side effect of limited estrogen in my body. But, estrogen is certainly a 'no-no' for me.
Let us know what you find out. I know how you feel about wanting to be here for your family. That's always been my biggest concern, especially now since we just had our first grandchild in January! Seeing Caleb for the first time re-cemented the knowledge that life goes on and God is good! And I feel that way each and everytime I see him. So, hang on to the Lord's promises, and that He will never leave you or forsake you. And lean on our shoulders anytime you need to.
Luv & Hugs & Prayers!
Monika
I'm feeling the prayers. I slept pretty good last night for the first time in a long time and feel calm and relaxed today. god is so good. congratulation on your first grandbaby Monika I just got my first one last January and I am blessed with them living with us for about a month while they are fixing up there new home they just bought. it will be hard when they move out I will miss them all but expecially my 1 yr old grandaughter. also what does atropy mean? Laura0 -
Laura.
Haven't spoke with you in awhile....My prayers for you are always there...hope the anxiety goes away soon.
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Atrophy - Wikipedia, the free encyclopedia
Atrophy is the partial or complete wasting away of a part of the body. Causes of atrophy include poor nourishment, poor circulation, loss of hormonal support, loss of nerve supply to the target organ, disuse or lack of exercise or disease intrinsic to the tissue itself. Hormonal and nerve inputs that maintain an organ or body part are referred to as trophic.
(((HUGS)))Joan0 -
Laura My Prayers TooJoanC said:Laura.
Haven't spoke with you in awhile....My prayers for you are always there...hope the anxiety goes away soon.
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Atrophy - Wikipedia, the free encyclopedia
Atrophy is the partial or complete wasting away of a part of the body. Causes of atrophy include poor nourishment, poor circulation, loss of hormonal support, loss of nerve supply to the target organ, disuse or lack of exercise or disease intrinsic to the tissue itself. Hormonal and nerve inputs that maintain an organ or body part are referred to as trophic.
(((HUGS)))Joan
Laura I am praying too. Hope its nothing. Stay relaxed.
Prayers and Hugs
Sandy0 -
Question for BonnieBonnieR said:Vaginal Cuff Tumor or Atrophy
Dearest Laura,
It could be atrophy too, we all suffer from it because of lack of estrogen. I know I dealt with a lot of vaginal pain during exams before I had a vaginal tumor. I am praying that is all it is, and also lifting your prayer request for having more faith and relaxing. Relax in God's Love ~ Peace ~ Grace
God Bless Bonnie
I read these posts everyday but I have read very little about vaginal cuff tumor. I've been in remission for 21 months but the last 2 paptests have come out ASCUS. This last one showed changes from the last one. I'm supposed to retake the test in May. Did you also have abnormal pap tests before this tumor showed up? There is plenty of info online about ASCUS but nothing about someone in my situation who's had ovarian cancer. Does having a vaginal cuff tumor mean secondary vaginal cancer or is it just part of a recurrance of ovarian cancer? Did the cells spread or was it a different cancer? This is what confuses me. It's not that I am expecting to get a vaginal tumor but I just want to be aware and not lie here in ignorance. I've only been able to talk to nurses and the physican's assistant about this since my doctor hasn't been there for my last 3 checkups. He's very busy and apparently (and understandably) priority must be given to cancer patients and not to those in remission coming in just for checkups and paptests. But he does look at my chart and tells them what to do about me. At least I feel good about that. Could you also tell me what your symptoms were before the tumor showed up? Besides the pain. Was there bleeding?0 -
NOrmal papsDreamdove said:Question for Bonnie
I read these posts everyday but I have read very little about vaginal cuff tumor. I've been in remission for 21 months but the last 2 paptests have come out ASCUS. This last one showed changes from the last one. I'm supposed to retake the test in May. Did you also have abnormal pap tests before this tumor showed up? There is plenty of info online about ASCUS but nothing about someone in my situation who's had ovarian cancer. Does having a vaginal cuff tumor mean secondary vaginal cancer or is it just part of a recurrance of ovarian cancer? Did the cells spread or was it a different cancer? This is what confuses me. It's not that I am expecting to get a vaginal tumor but I just want to be aware and not lie here in ignorance. I've only been able to talk to nurses and the physican's assistant about this since my doctor hasn't been there for my last 3 checkups. He's very busy and apparently (and understandably) priority must be given to cancer patients and not to those in remission coming in just for checkups and paptests. But he does look at my chart and tells them what to do about me. At least I feel good about that. Could you also tell me what your symptoms were before the tumor showed up? Besides the pain. Was there bleeding?
I didn't have any different symptoms or didn't realize that they could be linked to vaginal tumor. First, it is ovarian cancer not vaginal cancer, Second, I have normal pap tests, and not sure if part of the pain I was dealing with was from the tumor or from other things. We go through so much it's hard to tell, Last thing I do have some vaginal bleeding, mostly spot off an on but don't know if it is from tumor or not. I discoverd I had the tumor after a ct scan. Hope that helps answer a few of questions. Hugs Bonnie0 -
Once again, I am so glad I'm on this site. I learn so much! I had my pap a couple of weeks ago and they called and said it was normal. But, I had so much pain while they were trying to do the procedure I was about off the table. The doctor asked if I had problems like this before which is a big no! But now I will keep in the back of my head about these vaginal tumors or atrophy and ask again when I see them in June.
Laura I am so sorry you are going through this all. I declined the Avastin trial because I did not think I could do a year worth of chemo, so you are my hero for trying it.
I was diagnosed at 43 and am a mom to a 22 year old young man. One of my biggest fears during this whole ovarian cancer journey is not seeing him grow more, get married and have children. I think I would miss that more then anything.
You take care and keep us posted on what you find out. Hugs.
Kris0 -
The more info we have the betterkris43 said:Once again, I am so glad I'm on this site. I learn so much! I had my pap a couple of weeks ago and they called and said it was normal. But, I had so much pain while they were trying to do the procedure I was about off the table. The doctor asked if I had problems like this before which is a big no! But now I will keep in the back of my head about these vaginal tumors or atrophy and ask again when I see them in June.
Laura I am so sorry you are going through this all. I declined the Avastin trial because I did not think I could do a year worth of chemo, so you are my hero for trying it.
I was diagnosed at 43 and am a mom to a 22 year old young man. One of my biggest fears during this whole ovarian cancer journey is not seeing him grow more, get married and have children. I think I would miss that more then anything.
You take care and keep us posted on what you find out. Hugs.
Kris
I get so much info from this site, I always recommend it to others going thru cancer or surviving it. The doctor, nurses, and physician's assistant don't give me as much insight as I need. They don't have time or they just don't know. I had spotting for over 2 years since my surgery and it always concerned me even though I've been NED for 21 months. I never knew where it was coming from--from my urinary tract (I was irritated there since I started chemo) or my vagina. They didn't really know either. Then I started having abnormal paptests. Even then they didn't know if the bleeding was coming from that or a separate issue. I kept looking up stuff on the internet but could find nothing about someone having had ovarian cancer and having abnormal paptests. I'm still up in the air about it but it helps looking at the experiences others have had on this site. So for the time being I am just re-taking paptests every few months and see what happens. It very likely means nothing since I am 53 and post-menopausal. Probably related to lack of hormones. I didn't even used know I had a "vaginal cuff" after the surgery. I see so much of the ovarian cancer recurring on this site so I still have to be wary and not get too comfortable. If it wasn't for the stupid abnormal (ASCUS) paptests I probably would not be concerned at all. Though I have to add that for a long time I had vaginal soreness, maybe atrophy, but I think it is getting better because I feel better "down there." When I used to have a relationship it was a big concern because I wanted to have a normal life. Thanks for your help, Bonnie0 -
I hesitate to even post this, but you seem really grounded and stable, and not one to spin off into some bad worrying over a thought that is probably unrelated to you. I'm assuming that all of your 'female parts' were removed during your surgery and there may be nothing left in there that could be exfoliating cells. But I'd feel remiss if I didn't share this with anyone with an abnormal PAP. Of the 10 or so 'UPSC Sisters', 3 or 4 of us (me included) got the first hint that we may have cancer when abnormal cells were found on our annual routine PAP tests. Each of our gyne-ons were 'SHOCKED' and said uterine cancer is NEVER picked up on a PAP test, (yet the combined experience of us that share this rare cancer know that isn't true.) After a lot of personal research, I've learned that apparently gynecologic polyps sometimes 'exfoliate' cells (like your skin exfoliates cells) and they can find themselves in 'the right place at the right time', and can be picked up in PAP tests. For each of us with UPSC that started our cancer journey with an abnormal PAP, it took months of inconclusive biopsies of the wrong parts, and we really knew nothing conclusive until a D&C and pathology was done, and some of these women had no conclusive diagnosis until their hysterectomies.Dreamdove said:The more info we have the better
I get so much info from this site, I always recommend it to others going thru cancer or surviving it. The doctor, nurses, and physician's assistant don't give me as much insight as I need. They don't have time or they just don't know. I had spotting for over 2 years since my surgery and it always concerned me even though I've been NED for 21 months. I never knew where it was coming from--from my urinary tract (I was irritated there since I started chemo) or my vagina. They didn't really know either. Then I started having abnormal paptests. Even then they didn't know if the bleeding was coming from that or a separate issue. I kept looking up stuff on the internet but could find nothing about someone having had ovarian cancer and having abnormal paptests. I'm still up in the air about it but it helps looking at the experiences others have had on this site. So for the time being I am just re-taking paptests every few months and see what happens. It very likely means nothing since I am 53 and post-menopausal. Probably related to lack of hormones. I didn't even used know I had a "vaginal cuff" after the surgery. I see so much of the ovarian cancer recurring on this site so I still have to be wary and not get too comfortable. If it wasn't for the stupid abnormal (ASCUS) paptests I probably would not be concerned at all. Though I have to add that for a long time I had vaginal soreness, maybe atrophy, but I think it is getting better because I feel better "down there." When I used to have a relationship it was a big concern because I wanted to have a normal life. Thanks for your help, Bonnie
Like I said, this probably has no relevance to your abnormal PAP, since you've already been 'debulked'. But with your history, maybe they could do a sonogram to rule out any polps anywhere in the peritoneal cavity. Then when you get a clear sonogram you can really put your mind at rest. Please post so I know I haven't 'said' something that will haunt and worry you in the dark of night. I sure don't mean to do THAT! But the combination of post-menopausal spotting and an abnoral PAP would make me want some more snooping around to be done.0 -
Don't hesitate to tell me something I should knowlindaprocopio said:I hesitate to even post this, but you seem really grounded and stable, and not one to spin off into some bad worrying over a thought that is probably unrelated to you. I'm assuming that all of your 'female parts' were removed during your surgery and there may be nothing left in there that could be exfoliating cells. But I'd feel remiss if I didn't share this with anyone with an abnormal PAP. Of the 10 or so 'UPSC Sisters', 3 or 4 of us (me included) got the first hint that we may have cancer when abnormal cells were found on our annual routine PAP tests. Each of our gyne-ons were 'SHOCKED' and said uterine cancer is NEVER picked up on a PAP test, (yet the combined experience of us that share this rare cancer know that isn't true.) After a lot of personal research, I've learned that apparently gynecologic polyps sometimes 'exfoliate' cells (like your skin exfoliates cells) and they can find themselves in 'the right place at the right time', and can be picked up in PAP tests. For each of us with UPSC that started our cancer journey with an abnormal PAP, it took months of inconclusive biopsies of the wrong parts, and we really knew nothing conclusive until a D&C and pathology was done, and some of these women had no conclusive diagnosis until their hysterectomies.
Like I said, this probably has no relevance to your abnormal PAP, since you've already been 'debulked'. But with your history, maybe they could do a sonogram to rule out any polps anywhere in the peritoneal cavity. Then when you get a clear sonogram you can really put your mind at rest. Please post so I know I haven't 'said' something that will haunt and worry you in the dark of night. I sure don't mean to do THAT! But the combination of post-menopausal spotting and an abnoral PAP would make me want some more snooping around to be done.
Linda, you never have to worry about upsetting me because I want to be 100 percent aware of what is going on with my body. Afterall, I still have a 14-year old at home and I am her only parent. I'm not going to flake out! I first had an abnormal test in Oct. and then again in Jan. but they could see changes from this last test, yet don't see any cancer cells. I was totally debaulked but even with that, ovarian cancer often comes back in the abdominal cavity where the ovaries used to be. I believe it is possible for cancer cells to meander, as they have done. In my surgery back in Jan. 2007 they had already meandered to my appendix and above my liver, under my diaphram. So couldn't they meander to my cervical cuff, too? Apparently it happened to Bonnie. She said it was still ovarian cancer. That means the tumor on her cervical cuff was ovarian cancer cells, not secondary vaginal cancer, which can happen, too, from what I read. I was told that if my test came back abnormal again (I have a checkup in May) they would discuss what to do. I'm assuming further testing, such as a CT scan or sonogram, though I haven't heard the use of that test for cancer. My CA-125 has been normal. But if they find something, the sooner the better. I don't want to jump on the "panic wagon." I have to admit it drives me nuts not knowing but we all go thru that on here. But the longer I can go NED the better. I still feel healthy and can live a normal life, that's what counts. I don't pursue relationships with men anymore because I had problems with soreness and I didn't have the desire, as much as I would have liked to have it. I used to work with a woman who complained about all sorts of physical ailments but she had no health insurance and couldn't get medicaid because her husband was working. I kept encouraging her to get checked, to find some way of getting care. I didn't want to scare her but I didn't feel comfortable with what she was describing to me. She looked into programs and finally after being misdiagnosed and taking some medication she problem didn't need, she developed a lump on her neck. Well, it turned out to be Hodgekins Lymphoma. It was spread thruout her body. She had to have chemo and radiation and was not able to work. She is still alive, thank god. Currently in remission but she still can't work because of other physical problems. I am glad I kept encouraging her to get tested. Thank you, Linda, for being concerned enough to say something.0 -
CONGRATULATIONS!Lauracec said:thankyou everyone
I'm feeling the prayers. I slept pretty good last night for the first time in a long time and feel calm and relaxed today. god is so good. congratulation on your first grandbaby Monika I just got my first one last January and I am blessed with them living with us for about a month while they are fixing up there new home they just bought. it will be hard when they move out I will miss them all but expecially my 1 yr old grandaughter. also what does atropy mean? Laura
Laura:
New babies are wonderful, aren't they? I can imagine how much you'll miss having everyone with you everyday once they move. I have been helping our daugther quite a bit, so we've seen our grandson a great deal in this past month. I can't stand being away just one day!
Well, atrophy is the breakdown/decrease of muscle/tissue due to lack of blood flow, nourishment, use. It's much like when you have a cast on a leg, for example. When you remove the cast your leg is skinnier than the other because of lack of use and good blood circulation. So, being I can't use any estrogen products, the vaginal tissue is extremely dry and has shrunk terribly (sorry for the graphic). I can't think of a better way to explain it. And believe me, it is uncomfortable. But again, just one of those unfortunate side affects that I deal with considering I am alive and doing pretty well.
Glad to hear you slept better because of all the wonderful support here. We're all pretty much in the same boat, but some of us get it rocked more than others. Hang in there Laura, and focus on your precious grandaughter!
Luv & Hugs,
Monika0 -
went to the onc todaymopar said:CONGRATULATIONS!
Laura:
New babies are wonderful, aren't they? I can imagine how much you'll miss having everyone with you everyday once they move. I have been helping our daugther quite a bit, so we've seen our grandson a great deal in this past month. I can't stand being away just one day!
Well, atrophy is the breakdown/decrease of muscle/tissue due to lack of blood flow, nourishment, use. It's much like when you have a cast on a leg, for example. When you remove the cast your leg is skinnier than the other because of lack of use and good blood circulation. So, being I can't use any estrogen products, the vaginal tissue is extremely dry and has shrunk terribly (sorry for the graphic). I can't think of a better way to explain it. And believe me, it is uncomfortable. But again, just one of those unfortunate side affects that I deal with considering I am alive and doing pretty well.
Glad to hear you slept better because of all the wonderful support here. We're all pretty much in the same boat, but some of us get it rocked more than others. Hang in there Laura, and focus on your precious grandaughter!
Luv & Hugs,
Monika
my ca 125 went up yet again now it is at 47 or something like that. that is not high I know but is for me. that is what it was b-4 my debulking and chemo then it went to 8 for monthes and then 13,21,now 47 so on wed I get a pet scan and saturday I get a ct scan and we will see after that. wow what a journey I asked my doc for more ativan today he said no problem. he said probably more chemo. God bless Laura. I need to remember a merry heart doith good like a medicine0 -
verseLauracec said:went to the onc today
my ca 125 went up yet again now it is at 47 or something like that. that is not high I know but is for me. that is what it was b-4 my debulking and chemo then it went to 8 for monthes and then 13,21,now 47 so on wed I get a pet scan and saturday I get a ct scan and we will see after that. wow what a journey I asked my doc for more ativan today he said no problem. he said probably more chemo. God bless Laura. I need to remember a merry heart doith good like a medicine
Laura,
That is one of my favorite verses. "A cheerful heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22
We do not want to dry up from lack of cheerfulness, some of us are already dry enough!
Love you,
Libby0
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