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If Ca-125 keeps rising after surgery?
Hi friends,
It's me, one of the borderline ladies (surgery 5/2010 d/x borderline endometrioid tumor on right ovary) back to get some more feedback after my first post-surgery check-up with my gyn-oncologist. (He did not do the surgery, my gynecologist did.)
My gyn suspected a cyst and confirmed it with ultrasound and CT scan. Ca-125 was elevated at 36. Lost mother to ovca in 2008. Right ovary and fallopian tube removed.
Now my Ca-125 is at 55, ultrasound is clear, and gyn-onc wants to repeat Ca and ultrasound in six weeks. I
understand that it can be elevated due to several benign conditions or menstruation. I asked my gyn-oc what we would do if the numbers are the same or higher in six weeks, and he said that we would do probably nothing as long as the ultrasound is clear. At most a laparoscopy.
Unfortunately I never had a CA-125 before surgery, so I don't know for sure if the tumor caused its rise.
I am also worried because there were some peritoneal implants that my gyn thought were endometriosis that he burned off during surgery, and one of the cysts ruptured during removal.
At this point, I would feel very comfortable having a laparoscopy because I want to know what is going on inside, and by a gyn-oncologist. I thought I had closed the book on this chapter, but it looks like it is not yet the case.
Thoughts? Feedback? Appreciate any ideas.
It's me, one of the borderline ladies (surgery 5/2010 d/x borderline endometrioid tumor on right ovary) back to get some more feedback after my first post-surgery check-up with my gyn-oncologist. (He did not do the surgery, my gynecologist did.)
My gyn suspected a cyst and confirmed it with ultrasound and CT scan. Ca-125 was elevated at 36. Lost mother to ovca in 2008. Right ovary and fallopian tube removed.
Now my Ca-125 is at 55, ultrasound is clear, and gyn-onc wants to repeat Ca and ultrasound in six weeks. I
understand that it can be elevated due to several benign conditions or menstruation. I asked my gyn-oc what we would do if the numbers are the same or higher in six weeks, and he said that we would do probably nothing as long as the ultrasound is clear. At most a laparoscopy.
Unfortunately I never had a CA-125 before surgery, so I don't know for sure if the tumor caused its rise.
I am also worried because there were some peritoneal implants that my gyn thought were endometriosis that he burned off during surgery, and one of the cysts ruptured during removal.
At this point, I would feel very comfortable having a laparoscopy because I want to know what is going on inside, and by a gyn-oncologist. I thought I had closed the book on this chapter, but it looks like it is not yet the case.
Thoughts? Feedback? Appreciate any ideas.
Hi something. My first surgery was done by my regular GYN because both he AND a gyn-onc (I consulted one before my first surgery because of family history) thought I just had cysts and not anything malignant.
So my first surgery was just a laparoscopy to remove the cysts. BUT he did do washings. He said it's standard operating procedure. Then he removed the cysts from the ovaries. While doing that, he found an 'adnexal mass' near the right ovary... aka implant. He removed that too and sent it to pathology. I did not have a gyn-onc on stand-by and I did not insist on doing frozen sections during the surgery. In hindsight, I should have insisted (I mentioned it but didn't insist). So after the path came back as borderline, off I went to the gyn-onc again. He was surprised and apologized for telling me it was nothing the first time around. (However, the first time around he recommend a propholactic tah-bso due to family history of breast and ovarian cancer... I was like NO WAY jose to that at the time).
So anyways, I know they like to do fertility sparing surgery for younger women. But, I still think they can go in and explore everywhere and look for any more of those implants, they can biopsy your nodes, your colon, your liver, your existing ovary etc et, do pelvic washings. I think you are right on in your gut instincts to ask for that.
So my first surgery was just a laparoscopy to remove the cysts. BUT he did do washings. He said it's standard operating procedure. Then he removed the cysts from the ovaries. While doing that, he found an 'adnexal mass' near the right ovary... aka implant. He removed that too and sent it to pathology. I did not have a gyn-onc on stand-by and I did not insist on doing frozen sections during the surgery. In hindsight, I should have insisted (I mentioned it but didn't insist). So after the path came back as borderline, off I went to the gyn-onc again. He was surprised and apologized for telling me it was nothing the first time around. (However, the first time around he recommend a propholactic tah-bso due to family history of breast and ovarian cancer... I was like NO WAY jose to that at the time).
So anyways, I know they like to do fertility sparing surgery for younger women. But, I still think they can go in and explore everywhere and look for any more of those implants, they can biopsy your nodes, your colon, your liver, your existing ovary etc et, do pelvic washings. I think you are right on in your gut instincts to ask for that.
Arg, you're right...it is frustrating! And I agree that my surgery was not adequate for my diagnosis. Sigh...I should have insisted that there was a gyn/oc doing my surgery.
My gyn didn't do any pelvic washings or anything else connected with a possible cancer diagnosis, I guess because he didn't have any idea that the tumor was suspicious. (But he must have had SOME idea, right? I mean with a family history and an elevated CA-125).
My gyn-oc is actually the same one who took care of my mom and did her initial surgery and diagnosed her, so he has all her records. The first time I saw him, he told me that she had a cancer of the fallopian tube. He is the director of gyn-oc at two different hospitals and seems to be very good. I think I just need to talk to him about my fears and concerns. He keeps saying that he wants to try to keep my other ovary because I am, in his words, "so young." And I know from reading some of his articles that he doesn't believe the artificial hormones can do as good as a job as the body's, so if there is a, pardon the pun, BORDERLINE case :-), he will opt to leave the other ovary.
This where I am not clear, and I need to ask him...can't there be an exploratory surgery,
a "second look" and some biopsies taken of the right side as well as a good look taken into other areas where cancer might be hiding?
I am in Baltimore. Very close to Hopkins.
Thank you so much, Nerdymom, for talking to me about my case and going over the details. It means a lot to me. In a strange way, I feel sort of close to my mom knowing that I am doing at least some of the things she used to have to do (minus the chemo, though, luckily!)
My gyn didn't do any pelvic washings or anything else connected with a possible cancer diagnosis, I guess because he didn't have any idea that the tumor was suspicious. (But he must have had SOME idea, right? I mean with a family history and an elevated CA-125).
My gyn-oc is actually the same one who took care of my mom and did her initial surgery and diagnosed her, so he has all her records. The first time I saw him, he told me that she had a cancer of the fallopian tube. He is the director of gyn-oc at two different hospitals and seems to be very good. I think I just need to talk to him about my fears and concerns. He keeps saying that he wants to try to keep my other ovary because I am, in his words, "so young." And I know from reading some of his articles that he doesn't believe the artificial hormones can do as good as a job as the body's, so if there is a, pardon the pun, BORDERLINE case :-), he will opt to leave the other ovary.
This where I am not clear, and I need to ask him...can't there be an exploratory surgery,
a "second look" and some biopsies taken of the right side as well as a good look taken into other areas where cancer might be hiding?
I am in Baltimore. Very close to Hopkins.
Thank you so much, Nerdymom, for talking to me about my case and going over the details. It means a lot to me. In a strange way, I feel sort of close to my mom knowing that I am doing at least some of the things she used to have to do (minus the chemo, though, luckily!)
Gosh how frustrating. Having lost your mother 2 years ago to this stupid disease and now having to deal with it yourself and not getting clear-cut answers from your doctors...
Do you know what type of ovca your mom had? Have you had genetic testing done?
I wonder why the second gyn-onc said that there's no chance the implants could have been tumors? Did your gyn do any pelvic washings?
Argh this is frustrating. I just feel like your first surgery wasn't remotely adequate. Perhaps you could post on the expert forum. What area do you live in? Perhaps some borderline ladies could make recommendations.
Do you know what type of ovca your mom had? Have you had genetic testing done?
I wonder why the second gyn-onc said that there's no chance the implants could have been tumors? Did your gyn do any pelvic washings?
Argh this is frustrating. I just feel like your first surgery wasn't remotely adequate. Perhaps you could post on the expert forum. What area do you live in? Perhaps some borderline ladies could make recommendations.
Thanks Nerdymom and Heffmeister for your replies.
I am 36 and I don't have children and am unmarried and probably will not ever have children. I wasn't staged because a gynecologist did my surgery and a gyn/oc wasn't called in to consult because he didn't know anything was wrong until the path lab sent back the results.
My current gyn-oc, who I was referred to after the diagnosis, is of the mind that he wants to avoid removing my other ovary unless necessary. I am more or less ambivalent about it. I just want to feel safe.
My Ca-125 was 36 before the surgery and now it is 55.
I did see a second gyn/oc for a second opinion after the surgery to see how he would manage it, and basically he told me that the tumor was benign (then why did pathlab call it an atypical proliferating tumor?) and that he would just recommend monitoring it.
I asked him if there was any chance that the implants could have been tumors and he just said a flat "No," but when I asked my first/gyn-oc in the visit the other day, he said
"That's what we're worried about."
I do with those implants had been sent to pathology. I researched endometrioid tumors and found out that like in 80% of the cases they are malignant, and about 18% of the time they are benign, so that leaves about 2% for borderline. The sample WAS sent to Johns Hopkins for a second opinion that confirmed the initial diagnosis, so that gives me some comfort that an expert did look at it.
I am 36 and I don't have children and am unmarried and probably will not ever have children. I wasn't staged because a gynecologist did my surgery and a gyn/oc wasn't called in to consult because he didn't know anything was wrong until the path lab sent back the results.
My current gyn-oc, who I was referred to after the diagnosis, is of the mind that he wants to avoid removing my other ovary unless necessary. I am more or less ambivalent about it. I just want to feel safe.
My Ca-125 was 36 before the surgery and now it is 55.
I did see a second gyn/oc for a second opinion after the surgery to see how he would manage it, and basically he told me that the tumor was benign (then why did pathlab call it an atypical proliferating tumor?) and that he would just recommend monitoring it.
I asked him if there was any chance that the implants could have been tumors and he just said a flat "No," but when I asked my first/gyn-oc in the visit the other day, he said
"That's what we're worried about."
I do with those implants had been sent to pathology. I researched endometrioid tumors and found out that like in 80% of the cases they are malignant, and about 18% of the time they are benign, so that leaves about 2% for borderline. The sample WAS sent to Johns Hopkins for a second opinion that confirmed the initial diagnosis, so that gives me some comfort that an expert did look at it.
Depending on your age and whether you want to keep your fertility I would consider more surgery and being staged. I ended up having a TAH/BSO after I got my borderline result. My tumor had ruptured too. I'm only 32 but felt it gave me the best chance of not having a re-occurance and I have 2 children already.
Hi there somethingroyal,
Few questions first.
Are you trying to preserve your fertility? Is that why you didn't have the full staging surgery?
Your CA125 was 36 when? Right after surgery? Now it is 55 at your first 3 month check?
Did the peritoneal implants get sent to pathology?
I would highly recommend getting a second opinion. I am also a borderline lady. I had a cyst on each ovary removed by my gyn using laparoscopy which turned out to be serous borderline tumors. I then had a full staging surgery done by a gyn-onc. They go through your entire insides biopsying everything including lymph nodes and your intestines, remove omentum (cancer likes to hide there), remove your uterus, appendix etc etc. It's the best and only treatment for borderline cancer. Your type of borderline is different from mine however, so I can't speak on those particulars.
Anyways, I think the only reason they don't do a full tah-bso is to preserve fertility in younger women.
I am concerned given your ca125s are going up and you haven't had staging by a gyn-onc. Perhaps get a second opinion if that's possible.
Best of luck
Few questions first.
Are you trying to preserve your fertility? Is that why you didn't have the full staging surgery?
Your CA125 was 36 when? Right after surgery? Now it is 55 at your first 3 month check?
Did the peritoneal implants get sent to pathology?
I would highly recommend getting a second opinion. I am also a borderline lady. I had a cyst on each ovary removed by my gyn using laparoscopy which turned out to be serous borderline tumors. I then had a full staging surgery done by a gyn-onc. They go through your entire insides biopsying everything including lymph nodes and your intestines, remove omentum (cancer likes to hide there), remove your uterus, appendix etc etc. It's the best and only treatment for borderline cancer. Your type of borderline is different from mine however, so I can't speak on those particulars.
Anyways, I think the only reason they don't do a full tah-bso is to preserve fertility in younger women.
I am concerned given your ca125s are going up and you haven't had staging by a gyn-onc. Perhaps get a second opinion if that's possible.
Best of luck
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