Bleeding as a symptom of a recurrence

lindaprocopio said:

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.

lindaprocopio said:

I wrote a huge post and it disappeared! Trying again!
I just wrote a LONG recounting of my appointment today at the gyne-onc on that spotting, and it disappeared when I hit "Submit", so I'm trying again. It was a GREAT appointment and I came away with a lot of new information to share.

First off, on the BLEEDING: He looked up there first and could only see radiation damage, but also did a thorough (!!!) vaginal and rectal exam and said that "everything felt very smooth", nothing suspicious". He said that an experienced gyne-onc can feel a tumor long before it can be picked up by a CT/PET, and he could feel nothing wrong, but he did a Pap test to see if it shows anything microscopic that hints of trouble. So, GOOD NEWS THERE, at least for now!

We talked about the differing pathology analysis diagnosis's. He said that "for neatness sake and just to know" we could send my 2008 hysterectomy tissue slides to John Hopkins for a "tie breaker" opinion. John Hopkins' gynecology-pathology department is their "go to" place when they need an outside opinion. But he said, in the larger picture, that it doesn't make any difference which cell histology we are dealing with, prognosis-wise, or even treatment wise, as all aggressive endometrial cancers are treated the same way as they only have so many options to try. He did say that papillary serous is a 'bad character' and that it is always good news when UPSC is ruled out. But the fact that I didn't have bleeding PRIOR to my original diagnosis and have always been thin and don't fit any of the characteristics of women that typically get estrogen-fed cancers,....he is unsure himself which pathology is correct. I seem more like a UPSC girl, I guess.

What would make a difference in my prognosis is whether I actually had a recurrence or not. He still thinks I did, but is not 100% sure. He said that if my May 17th CT/PET lights up, we will try and see if we can get a biopsy this time to confirm any suspected recurrence. So we decided to hold off on sending my old 2008 tissue slides to John Hopkins at this time, with the thought that it might be more telling if we sent live/new tissue to them for assays if I have to have a biopsy after my CT/PET. We can always send the old tissue there for a 3rd opinion any time.

This gyne-onc has a TINY personal case load and an extensive support staff because he is head of Women's Health at this medical center and a big shot with a lot of administrative responsibilities. He had a physician's assistant and an oncology nurse practioner with him during my entire exam and consultation, both very prepared for my appointment and completely familiar with my case. (I wish my chemo-onc had this type of support and case load!)

We had an interesting discussion on his strategy for me and for cancer treatment in general. He is a firm believer that a person's BONE MARROW must be preserved so that when you need chemo, your blood counts will be good enough to allow it. So he believes in talking a break from chemo whenever you safely can, and doesn't like low-dose 'maintenance' chemo for people in remission. He said he'd even be against magace or tamoxifen if I have a clear CT/PET, even though they don't beat down the body the way chemo does. He'd prefer to save hormone-related treatments for a time in case the time ever comes when I may not be strong enough to take chemo and need something safe to try. He said that even if something small lights up on my CT/PET, if my CA125 stays low, he'd be likely to recommend no treatment and a 'watch-and-see' approach of close monitoring.

He said if I my CT/PET lights up in multiple places or shows anything at all large, besides the biopsy he’d want me back in chemo. He said that it probably wouldn’t be taxol again, since a new recurrence would mean that taxol was no longer effective on me, and he’d be looking at carboplatin as the basis of my next chemo regime. (I’m guessing in combination with Doxil, but that wasn’t mentioned and is just my guess.)

He said that when I am on a 3-month break from chemo, he'd prefer I didn't even get my CA125 taken. He likes to see women FORGET about cancer when they are in a break! But I have to have my port flushed at least every 8 weeks, so I KNOW I will ask for a CA125 when I go in for a port flush!! I just will have to try and not let it make me crazy if it fluctuates. He said if my May 17th CT/PET is clear, I can cancel my appointment with him on May 24th and he'll see me in 3 months. But if it shows anything, to keep the appointment and we'll see if there is anything we can safely biopsy.

I can't think of any of tidbits that he dropped during the conversation, but if I think of anything else I'll post again.

lindaprocopio said:

I wrote a huge post and it disappeared! Trying again!
I just wrote a LONG recounting of my appointment today at the gyne-onc on that spotting, and it disappeared when I hit "Submit", so I'm trying again. It was a GREAT appointment and I came away with a lot of new information to share.

First off, on the BLEEDING: He looked up there first and could only see radiation damage, but also did a thorough (!!!) vaginal and rectal exam and said that "everything felt very smooth", nothing suspicious". He said that an experienced gyne-onc can feel a tumor long before it can be picked up by a CT/PET, and he could feel nothing wrong, but he did a Pap test to see if it shows anything microscopic that hints of trouble. So, GOOD NEWS THERE, at least for now!

We talked about the differing pathology analysis diagnosis's. He said that "for neatness sake and just to know" we could send my 2008 hysterectomy tissue slides to John Hopkins for a "tie breaker" opinion. John Hopkins' gynecology-pathology department is their "go to" place when they need an outside opinion. But he said, in the larger picture, that it doesn't make any difference which cell histology we are dealing with, prognosis-wise, or even treatment wise, as all aggressive endometrial cancers are treated the same way as they only have so many options to try. He did say that papillary serous is a 'bad character' and that it is always good news when UPSC is ruled out. But the fact that I didn't have bleeding PRIOR to my original diagnosis and have always been thin and don't fit any of the characteristics of women that typically get estrogen-fed cancers,....he is unsure himself which pathology is correct. I seem more like a UPSC girl, I guess.

What would make a difference in my prognosis is whether I actually had a recurrence or not. He still thinks I did, but is not 100% sure. He said that if my May 17th CT/PET lights up, we will try and see if we can get a biopsy this time to confirm any suspected recurrence. So we decided to hold off on sending my old 2008 tissue slides to John Hopkins at this time, with the thought that it might be more telling if we sent live/new tissue to them for assays if I have to have a biopsy after my CT/PET. We can always send the old tissue there for a 3rd opinion any time.

This gyne-onc has a TINY personal case load and an extensive support staff because he is head of Women's Health at this medical center and a big shot with a lot of administrative responsibilities. He had a physician's assistant and an oncology nurse practioner with him during my entire exam and consultation, both very prepared for my appointment and completely familiar with my case. (I wish my chemo-onc had this type of support and case load!)

We had an interesting discussion on his strategy for me and for cancer treatment in general. He is a firm believer that a person's BONE MARROW must be preserved so that when you need chemo, your blood counts will be good enough to allow it. So he believes in talking a break from chemo whenever you safely can, and doesn't like low-dose 'maintenance' chemo for people in remission. He said he'd even be against magace or tamoxifen if I have a clear CT/PET, even though they don't beat down the body the way chemo does. He'd prefer to save hormone-related treatments for a time in case the time ever comes when I may not be strong enough to take chemo and need something safe to try. He said that even if something small lights up on my CT/PET, if my CA125 stays low, he'd be likely to recommend no treatment and a 'watch-and-see' approach of close monitoring.

He said if I my CT/PET lights up in multiple places or shows anything at all large, besides the biopsy he’d want me back in chemo. He said that it probably wouldn’t be taxol again, since a new recurrence would mean that taxol was no longer effective on me, and he’d be looking at carboplatin as the basis of my next chemo regime. (I’m guessing in combination with Doxil, but that wasn’t mentioned and is just my guess.)

He said that when I am on a 3-month break from chemo, he'd prefer I didn't even get my CA125 taken. He likes to see women FORGET about cancer when they are in a break! But I have to have my port flushed at least every 8 weeks, so I KNOW I will ask for a CA125 when I go in for a port flush!! I just will have to try and not let it make me crazy if it fluctuates. He said if my May 17th CT/PET is clear, I can cancel my appointment with him on May 24th and he'll see me in 3 months. But if it shows anything, to keep the appointment and we'll see if there is anything we can safely biopsy.

I can't think of any of tidbits that he dropped during the conversation, but if I think of anything else I'll post again.

lindaprocopio said:

I wrote a huge post and it disappeared! Trying again!
I just wrote a LONG recounting of my appointment today at the gyne-onc on that spotting, and it disappeared when I hit "Submit", so I'm trying again. It was a GREAT appointment and I came away with a lot of new information to share.

First off, on the BLEEDING: He looked up there first and could only see radiation damage, but also did a thorough (!!!) vaginal and rectal exam and said that "everything felt very smooth", nothing suspicious". He said that an experienced gyne-onc can feel a tumor long before it can be picked up by a CT/PET, and he could feel nothing wrong, but he did a Pap test to see if it shows anything microscopic that hints of trouble. So, GOOD NEWS THERE, at least for now!

We talked about the differing pathology analysis diagnosis's. He said that "for neatness sake and just to know" we could send my 2008 hysterectomy tissue slides to John Hopkins for a "tie breaker" opinion. John Hopkins' gynecology-pathology department is their "go to" place when they need an outside opinion. But he said, in the larger picture, that it doesn't make any difference which cell histology we are dealing with, prognosis-wise, or even treatment wise, as all aggressive endometrial cancers are treated the same way as they only have so many options to try. He did say that papillary serous is a 'bad character' and that it is always good news when UPSC is ruled out. But the fact that I didn't have bleeding PRIOR to my original diagnosis and have always been thin and don't fit any of the characteristics of women that typically get estrogen-fed cancers,....he is unsure himself which pathology is correct. I seem more like a UPSC girl, I guess.

What would make a difference in my prognosis is whether I actually had a recurrence or not. He still thinks I did, but is not 100% sure. He said that if my May 17th CT/PET lights up, we will try and see if we can get a biopsy this time to confirm any suspected recurrence. So we decided to hold off on sending my old 2008 tissue slides to John Hopkins at this time, with the thought that it might be more telling if we sent live/new tissue to them for assays if I have to have a biopsy after my CT/PET. We can always send the old tissue there for a 3rd opinion any time.

This gyne-onc has a TINY personal case load and an extensive support staff because he is head of Women's Health at this medical center and a big shot with a lot of administrative responsibilities. He had a physician's assistant and an oncology nurse practioner with him during my entire exam and consultation, both very prepared for my appointment and completely familiar with my case. (I wish my chemo-onc had this type of support and case load!)

We had an interesting discussion on his strategy for me and for cancer treatment in general. He is a firm believer that a person's BONE MARROW must be preserved so that when you need chemo, your blood counts will be good enough to allow it. So he believes in talking a break from chemo whenever you safely can, and doesn't like low-dose 'maintenance' chemo for people in remission. He said he'd even be against magace or tamoxifen if I have a clear CT/PET, even though they don't beat down the body the way chemo does. He'd prefer to save hormone-related treatments for a time in case the time ever comes when I may not be strong enough to take chemo and need something safe to try. He said that even if something small lights up on my CT/PET, if my CA125 stays low, he'd be likely to recommend no treatment and a 'watch-and-see' approach of close monitoring.

He said if I my CT/PET lights up in multiple places or shows anything at all large, besides the biopsy he’d want me back in chemo. He said that it probably wouldn’t be taxol again, since a new recurrence would mean that taxol was no longer effective on me, and he’d be looking at carboplatin as the basis of my next chemo regime. (I’m guessing in combination with Doxil, but that wasn’t mentioned and is just my guess.)

He said that when I am on a 3-month break from chemo, he'd prefer I didn't even get my CA125 taken. He likes to see women FORGET about cancer when they are in a break! But I have to have my port flushed at least every 8 weeks, so I KNOW I will ask for a CA125 when I go in for a port flush!! I just will have to try and not let it make me crazy if it fluctuates. He said if my May 17th CT/PET is clear, I can cancel my appointment with him on May 24th and he'll see me in 3 months. But if it shows anything, to keep the appointment and we'll see if there is anything we can safely biopsy.

I can't think of any of tidbits that he dropped during the conversation, but if I think of anything else I'll post again.

daisy366 said:

Linda,
Thanks for sharing all the info. I love your new doc. Good luck with scan. I see the ENT today and my CA125 dropped to 31!!!! hopefully all good news.

Blessings to all, Mary Ann

lindaprocopio said:

I wrote a huge post and it disappeared! Trying again!
I just wrote a LONG recounting of my appointment today at the gyne-onc on that spotting, and it disappeared when I hit "Submit", so I'm trying again. It was a GREAT appointment and I came away with a lot of new information to share.

First off, on the BLEEDING: He looked up there first and could only see radiation damage, but also did a thorough (!!!) vaginal and rectal exam and said that "everything felt very smooth", nothing suspicious". He said that an experienced gyne-onc can feel a tumor long before it can be picked up by a CT/PET, and he could feel nothing wrong, but he did a Pap test to see if it shows anything microscopic that hints of trouble. So, GOOD NEWS THERE, at least for now!

We talked about the differing pathology analysis diagnosis's. He said that "for neatness sake and just to know" we could send my 2008 hysterectomy tissue slides to John Hopkins for a "tie breaker" opinion. John Hopkins' gynecology-pathology department is their "go to" place when they need an outside opinion. But he said, in the larger picture, that it doesn't make any difference which cell histology we are dealing with, prognosis-wise, or even treatment wise, as all aggressive endometrial cancers are treated the same way as they only have so many options to try. He did say that papillary serous is a 'bad character' and that it is always good news when UPSC is ruled out. But the fact that I didn't have bleeding PRIOR to my original diagnosis and have always been thin and don't fit any of the characteristics of women that typically get estrogen-fed cancers,....he is unsure himself which pathology is correct. I seem more like a UPSC girl, I guess.

What would make a difference in my prognosis is whether I actually had a recurrence or not. He still thinks I did, but is not 100% sure. He said that if my May 17th CT/PET lights up, we will try and see if we can get a biopsy this time to confirm any suspected recurrence. So we decided to hold off on sending my old 2008 tissue slides to John Hopkins at this time, with the thought that it might be more telling if we sent live/new tissue to them for assays if I have to have a biopsy after my CT/PET. We can always send the old tissue there for a 3rd opinion any time.

This gyne-onc has a TINY personal case load and an extensive support staff because he is head of Women's Health at this medical center and a big shot with a lot of administrative responsibilities. He had a physician's assistant and an oncology nurse practioner with him during my entire exam and consultation, both very prepared for my appointment and completely familiar with my case. (I wish my chemo-onc had this type of support and case load!)

We had an interesting discussion on his strategy for me and for cancer treatment in general. He is a firm believer that a person's BONE MARROW must be preserved so that when you need chemo, your blood counts will be good enough to allow it. So he believes in talking a break from chemo whenever you safely can, and doesn't like low-dose 'maintenance' chemo for people in remission. He said he'd even be against magace or tamoxifen if I have a clear CT/PET, even though they don't beat down the body the way chemo does. He'd prefer to save hormone-related treatments for a time in case the time ever comes when I may not be strong enough to take chemo and need something safe to try. He said that even if something small lights up on my CT/PET, if my CA125 stays low, he'd be likely to recommend no treatment and a 'watch-and-see' approach of close monitoring.

He said if I my CT/PET lights up in multiple places or shows anything at all large, besides the biopsy he’d want me back in chemo. He said that it probably wouldn’t be taxol again, since a new recurrence would mean that taxol was no longer effective on me, and he’d be looking at carboplatin as the basis of my next chemo regime. (I’m guessing in combination with Doxil, but that wasn’t mentioned and is just my guess.)

He said that when I am on a 3-month break from chemo, he'd prefer I didn't even get my CA125 taken. He likes to see women FORGET about cancer when they are in a break! But I have to have my port flushed at least every 8 weeks, so I KNOW I will ask for a CA125 when I go in for a port flush!! I just will have to try and not let it make me crazy if it fluctuates. He said if my May 17th CT/PET is clear, I can cancel my appointment with him on May 24th and he'll see me in 3 months. But if it shows anything, to keep the appointment and we'll see if there is anything we can safely biopsy.

I can't think of any of tidbits that he dropped during the conversation, but if I think of anything else I'll post again.

lindaprocopio said:

I wrote a huge post and it disappeared! Trying again!
I just wrote a LONG recounting of my appointment today at the gyne-onc on that spotting, and it disappeared when I hit "Submit", so I'm trying again. It was a GREAT appointment and I came away with a lot of new information to share.

First off, on the BLEEDING: He looked up there first and could only see radiation damage, but also did a thorough (!!!) vaginal and rectal exam and said that "everything felt very smooth", nothing suspicious". He said that an experienced gyne-onc can feel a tumor long before it can be picked up by a CT/PET, and he could feel nothing wrong, but he did a Pap test to see if it shows anything microscopic that hints of trouble. So, GOOD NEWS THERE, at least for now!

We talked about the differing pathology analysis diagnosis's. He said that "for neatness sake and just to know" we could send my 2008 hysterectomy tissue slides to John Hopkins for a "tie breaker" opinion. John Hopkins' gynecology-pathology department is their "go to" place when they need an outside opinion. But he said, in the larger picture, that it doesn't make any difference which cell histology we are dealing with, prognosis-wise, or even treatment wise, as all aggressive endometrial cancers are treated the same way as they only have so many options to try. He did say that papillary serous is a 'bad character' and that it is always good news when UPSC is ruled out. But the fact that I didn't have bleeding PRIOR to my original diagnosis and have always been thin and don't fit any of the characteristics of women that typically get estrogen-fed cancers,....he is unsure himself which pathology is correct. I seem more like a UPSC girl, I guess.

What would make a difference in my prognosis is whether I actually had a recurrence or not. He still thinks I did, but is not 100% sure. He said that if my May 17th CT/PET lights up, we will try and see if we can get a biopsy this time to confirm any suspected recurrence. So we decided to hold off on sending my old 2008 tissue slides to John Hopkins at this time, with the thought that it might be more telling if we sent live/new tissue to them for assays if I have to have a biopsy after my CT/PET. We can always send the old tissue there for a 3rd opinion any time.

This gyne-onc has a TINY personal case load and an extensive support staff because he is head of Women's Health at this medical center and a big shot with a lot of administrative responsibilities. He had a physician's assistant and an oncology nurse practioner with him during my entire exam and consultation, both very prepared for my appointment and completely familiar with my case. (I wish my chemo-onc had this type of support and case load!)

We had an interesting discussion on his strategy for me and for cancer treatment in general. He is a firm believer that a person's BONE MARROW must be preserved so that when you need chemo, your blood counts will be good enough to allow it. So he believes in talking a break from chemo whenever you safely can, and doesn't like low-dose 'maintenance' chemo for people in remission. He said he'd even be against magace or tamoxifen if I have a clear CT/PET, even though they don't beat down the body the way chemo does. He'd prefer to save hormone-related treatments for a time in case the time ever comes when I may not be strong enough to take chemo and need something safe to try. He said that even if something small lights up on my CT/PET, if my CA125 stays low, he'd be likely to recommend no treatment and a 'watch-and-see' approach of close monitoring.

He said if I my CT/PET lights up in multiple places or shows anything at all large, besides the biopsy he’d want me back in chemo. He said that it probably wouldn’t be taxol again, since a new recurrence would mean that taxol was no longer effective on me, and he’d be looking at carboplatin as the basis of my next chemo regime. (I’m guessing in combination with Doxil, but that wasn’t mentioned and is just my guess.)

He said that when I am on a 3-month break from chemo, he'd prefer I didn't even get my CA125 taken. He likes to see women FORGET about cancer when they are in a break! But I have to have my port flushed at least every 8 weeks, so I KNOW I will ask for a CA125 when I go in for a port flush!! I just will have to try and not let it make me crazy if it fluctuates. He said if my May 17th CT/PET is clear, I can cancel my appointment with him on May 24th and he'll see me in 3 months. But if it shows anything, to keep the appointment and we'll see if there is anything we can safely biopsy.

I can't think of any of tidbits that he dropped during the conversation, but if I think of anything else I'll post again.

lindaprocopio said:

Small bit of GOOD NEWS today!
I got the results of the PAP test that I had when I went in to see my gyne-onc: it was CLEAR! And the spotting hadn't happened again since I had the PAP, so I am much less worried about it now. So I wanted to share my little bit of good news.

My CT/PET is Monday. I am trying not to think about it. (trying). The results will either mean 3 more months of being ME and FREE of treatment, or a return to chemo and the loss of this wonderful chemo break I've been on. ARGH! So much riding on a stupid test. I plan to NOT exercise for 48 hours prior and to havre NO carbs 24 hours prior and do everything in my power to get an accurate scan. And then I wait for the results. ARGH! The stress every 3 months can't be good for me!