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Malignant transformation of endometriosis
Thank you for this wonderful forum!
I am 50 years old and in November of 2003 at age 46, I opted to have an elective oophorectomy because I was post menopausal and had persistent ovarian cyts with a CA 125 of 40. Interestingly, I still had endometriomas despite my post menopausal status. I opted to have a bilateral ooporectomy as a means to try to avoid what ultimately proved inevitable. At the time of my oophorectomy there was no evidence of cancer (three opinions). No post op CA 125 was obtained.
About a 14 months after my oophorectomy I had some bloating and urinary frequency and could palpate a mass in my right lower quadrant. My CA 125 was 48 and I had surgery to remove the 9x14 cm cystic solid mass from my right pelvic sidewall. At the time of my surgery, the thought was that I had peritoneal cancer or had developed ovarian cancer from an ovarian remnent, however Dr Young's (MGH) pathology report read
"almost certainly has arisen in a focus of endometriosis."
Ultimately, the concensus was that I a malignant transformation of endometriosis; stage 1 C, grade three,( poorly differentiated, extensive necrosis with focal areas of carcinosarcoma). I was treated with 6 cycles of Carbo/Taxol (IV) and did very well. It has been 2 1/2 years since my diagnosis and I have continued to do well. My CA125s over the past 2 years have scared me at times, but ultimately, there has been no upward trend ( 4, 6, 7, 6, 7, then different lab, 15,( after breast punch biopsy), one week later, 7 ,then 7 10, 9 ,8 ,10). A recent CT scan showed no evidence of recurrence.
So, my questions follow:
1) I am well aware of the aggressive nature of this particular cancer and poor outcomes of many women with carcinosarcoma, but is it possible that because it occured in a focus of endometriosis I may have a better prognosis?
2) Could you also offer reassurance with respect to my CA125s.
I am 50 years old and in November of 2003 at age 46, I opted to have an elective oophorectomy because I was post menopausal and had persistent ovarian cyts with a CA 125 of 40. Interestingly, I still had endometriomas despite my post menopausal status. I opted to have a bilateral ooporectomy as a means to try to avoid what ultimately proved inevitable. At the time of my oophorectomy there was no evidence of cancer (three opinions). No post op CA 125 was obtained.
About a 14 months after my oophorectomy I had some bloating and urinary frequency and could palpate a mass in my right lower quadrant. My CA 125 was 48 and I had surgery to remove the 9x14 cm cystic solid mass from my right pelvic sidewall. At the time of my surgery, the thought was that I had peritoneal cancer or had developed ovarian cancer from an ovarian remnent, however Dr Young's (MGH) pathology report read
"almost certainly has arisen in a focus of endometriosis."
Ultimately, the concensus was that I a malignant transformation of endometriosis; stage 1 C, grade three,( poorly differentiated, extensive necrosis with focal areas of carcinosarcoma). I was treated with 6 cycles of Carbo/Taxol (IV) and did very well. It has been 2 1/2 years since my diagnosis and I have continued to do well. My CA125s over the past 2 years have scared me at times, but ultimately, there has been no upward trend ( 4, 6, 7, 6, 7, then different lab, 15,( after breast punch biopsy), one week later, 7 ,then 7 10, 9 ,8 ,10). A recent CT scan showed no evidence of recurrence.
So, my questions follow:
1) I am well aware of the aggressive nature of this particular cancer and poor outcomes of many women with carcinosarcoma, but is it possible that because it occured in a focus of endometriosis I may have a better prognosis?
2) Could you also offer reassurance with respect to my CA125s.
MEDICAL PROFESSIONAL
Hi there,
I understand the terror thing. I am an oncologist. I just see the numerator (that is , the women who have cases of endometriosis associated with cancer). I do not see the denominator (that is - women with endometriosis but no cancer.)
Remember - endometriosis is common. Cancer is rare in premenopausal women.
Having said that, I find that ultrasounds and CA 125 blood tests are helpful in monitoring endometriosis.
Caution: the CA 125 test is only approved to monitor someone with a known diagnosis of ovarian cancer. So insurance may not cover the cost of this blood test for other purposes. Endometriosis will cause a mild elevation in the CA 125 protein : 40 to 100 range) So as long as the CA 125 stays at whatever one's baseline is , that is reassuring. But if the CA 125 level rises after being stable at a certain level for years, I worry that something has changed.
The same is true with monitoring the cysts of endometriosis on ultrasound.
best wishes
I understand the terror thing. I am an oncologist. I just see the numerator (that is , the women who have cases of endometriosis associated with cancer). I do not see the denominator (that is - women with endometriosis but no cancer.)
Remember - endometriosis is common. Cancer is rare in premenopausal women.
Having said that, I find that ultrasounds and CA 125 blood tests are helpful in monitoring endometriosis.
Caution: the CA 125 test is only approved to monitor someone with a known diagnosis of ovarian cancer. So insurance may not cover the cost of this blood test for other purposes. Endometriosis will cause a mild elevation in the CA 125 protein : 40 to 100 range) So as long as the CA 125 stays at whatever one's baseline is , that is reassuring. But if the CA 125 level rises after being stable at a certain level for years, I worry that something has changed.
The same is true with monitoring the cysts of endometriosis on ultrasound.
best wishes
Hi, I too have endometirosis. I think the only way to get rid of your risk is to have everything including ovaries out and don't go on any estrogen so the endo dies off. I do think that even though the risk of getting ov ca from endo is increased, it is still rare. You might want to try to start a new thread to ask this question to the doctor cause I don't think she will see this one. Good luck! Shannon
What you have posted is terrifying for someone like me who has diffuse endometriosis. Is there anything that can be done to prevent/monitor/test or treat the endometriosis with the objective of preventing OVCA?
MEDICAL PROFESSIONAL
Hi there,
Thank you for your complete information.
In general, prognosis is related to several factors:
stage of cancer
grade
age of patient
the ability to resect the whole tumor
It sounds like for you - you have 3 of 4 good prognostic factors. The only feature of your cancer that increases the risk of recurrence is the grade.
Carcinosarcomas are very poorly organized tumors where a part of the tumor looks like a sarcoma (a tumor that comes from the muscle tissue). These tumors do have a higher risk of recurrence in the abdomen and possibly even distant spread.
It is possible that cancers that arise in endometriosis have a better prognosis. There is also a risk of developing new cancers in any other spots of endometriosis that might be present.
Your Ca 125 results all seem to be within the same 10 point range. If your ca 125 rises into the 40's, that would be highly suspicious of a recurrence.
I would recommend the following:
-yearly CT scans to look at your peritoneal lining for any thickening or nodules
-avoid estrogen products. Consider avoiding phytoestrogens such as soy (There is no good data on this, but there are a few case reports of women who ingested a tons of soy and developed endometrial cancer)
You doing so well and being 2 and half years out is a great prognostic sign.
best wishes
Thank you for your complete information.
In general, prognosis is related to several factors:
stage of cancer
grade
age of patient
the ability to resect the whole tumor
It sounds like for you - you have 3 of 4 good prognostic factors. The only feature of your cancer that increases the risk of recurrence is the grade.
Carcinosarcomas are very poorly organized tumors where a part of the tumor looks like a sarcoma (a tumor that comes from the muscle tissue). These tumors do have a higher risk of recurrence in the abdomen and possibly even distant spread.
It is possible that cancers that arise in endometriosis have a better prognosis. There is also a risk of developing new cancers in any other spots of endometriosis that might be present.
Your Ca 125 results all seem to be within the same 10 point range. If your ca 125 rises into the 40's, that would be highly suspicious of a recurrence.
I would recommend the following:
-yearly CT scans to look at your peritoneal lining for any thickening or nodules
-avoid estrogen products. Consider avoiding phytoestrogens such as soy (There is no good data on this, but there are a few case reports of women who ingested a tons of soy and developed endometrial cancer)
You doing so well and being 2 and half years out is a great prognostic sign.
best wishes
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