Can someone please explain endometrial stromal sarcoma as ovarian cancer?
But, I am so confused about this type of cancer. I had a hysterectomy two decades ago. They left my ovaries, which looked "pristine" at the time. Endometrial means it's from the uterus. That would not make it ovarian. AND, of course, I haven't had a uterus for 20 years, AND I didn't even have endometriosis. So what is it? Oh - and it is not "carcinoma" which is associated with uterine cancer - it is "sarcoma." Uterine even without a uterus? Ovarian? If uterine why call it ovarian cancer?
The pathology report says it can be primary arising from endometriosis but no endometriosis was found... or secondary representing metastasis from a uterine endometrial stromal sarcoma. But since I haven't had a uterus in 20 years... HUH?????
Comments
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Welcome
NJ
I want to welcome you to the board. Since you are dealing with such an extremely rare condition (endometrial stromal sarcoma [ESS] accounts for 0.2% of gynecological cancers), I don't know if you will find anyone currently on the ovarian discussion board who is dealing with the same condition.
There is an ACS discussion board for rare cancers and maybe someone on that board can give you information or answer your questions. You certainly will find great support here in general and you may have to educate us about ESS.
Although there are at least 13 different kinds of "ovarian cancer," your condition is actually from uterine tissue (which is a connective tissue--sarcoma is a cancer of connective tissue). Since you didn't have a uterus at the time of diagnosis and the problem was found on the ovary, your condition was called "ovarian cancer" but I would just call it ESS.
There is a strange phenomenon about mammalian bodies. If a kidney cell is transplanted into the liver, the kidney cells will reproduce and continue to exist in the liver. There has been research on Type 1 diabetic animals where pancreas stem cells were implanted into the amimal's liver & the pancreas cells produced insulin and reversed the disease.
So what I'm trying to explain is that perhaps some of your uterine cells landed in your ovary 20 years ago at the time of your hysterectomy & perpetuated the uterine tissue (thereby possibly enlarging the ovary even before the tissue went rogue). That is the only way I can explain how you got a uterine cancer of the ovary.
I don't think ESS has its own biomarker such as the CA-125 (and the CA-125 doesn't relate to your condition). And the problem was found early in you and is low grade so I expect that you should do well.
If you're going to be treated with hormonal therapy, you may want to visit the breast cancer discussion board if you have questions about Tamoxifen or whatever.
I don't know if you are aware of the endometrial stromal sarcoma web site (http://ess-sarcoma.com/). I hope you can find some answers on that site.
Best wishes to you and your family.0 -
Thanks LaundryQueenLaundryQueen said:Welcome
NJ
I want to welcome you to the board. Since you are dealing with such an extremely rare condition (endometrial stromal sarcoma [ESS] accounts for 0.2% of gynecological cancers), I don't know if you will find anyone currently on the ovarian discussion board who is dealing with the same condition.
There is an ACS discussion board for rare cancers and maybe someone on that board can give you information or answer your questions. You certainly will find great support here in general and you may have to educate us about ESS.
Although there are at least 13 different kinds of "ovarian cancer," your condition is actually from uterine tissue (which is a connective tissue--sarcoma is a cancer of connective tissue). Since you didn't have a uterus at the time of diagnosis and the problem was found on the ovary, your condition was called "ovarian cancer" but I would just call it ESS.
There is a strange phenomenon about mammalian bodies. If a kidney cell is transplanted into the liver, the kidney cells will reproduce and continue to exist in the liver. There has been research on Type 1 diabetic animals where pancreas stem cells were implanted into the amimal's liver & the pancreas cells produced insulin and reversed the disease.
So what I'm trying to explain is that perhaps some of your uterine cells landed in your ovary 20 years ago at the time of your hysterectomy & perpetuated the uterine tissue (thereby possibly enlarging the ovary even before the tissue went rogue). That is the only way I can explain how you got a uterine cancer of the ovary.
I don't think ESS has its own biomarker such as the CA-125 (and the CA-125 doesn't relate to your condition). And the problem was found early in you and is low grade so I expect that you should do well.
If you're going to be treated with hormonal therapy, you may want to visit the breast cancer discussion board if you have questions about Tamoxifen or whatever.
I don't know if you are aware of the endometrial stromal sarcoma web site (http://ess-sarcoma.com/). I hope you can find some answers on that site.
Best wishes to you and your family.
No, Thank you for the explanation. And for the link. When I was looking around the Internet I kept finding stuff about the uterus, so felt very confused. I was told that as an ovarian cancer it is a fraction of 1%. But it just didn't make sense to me to be "ovarian." Neither way made any sense.
I did not know about the ESS-Sarcoma site. Thank you.0 -
Cancer CollegeNJW said:Thanks LaundryQueen
No, Thank you for the explanation. And for the link. When I was looking around the Internet I kept finding stuff about the uterus, so felt very confused. I was told that as an ovarian cancer it is a fraction of 1%. But it just didn't make sense to me to be "ovarian." Neither way made any sense.
I did not know about the ESS-Sarcoma site. Thank you.
I guess you are in Cancer College now and just trying to find your classroom. I haven't taken the class on ESS and am still working on my degree in OVCA. Soon you will be the expert sharing your knowledge with others. I hope you continue to check in with us and let us know how you are doing.
Stay strong and know that you are already a survivor.0 -
Cancer CollegeLaundryQueen said:Cancer College
I guess you are in Cancer College now and just trying to find your classroom. I haven't taken the class on ESS and am still working on my degree in OVCA. Soon you will be the expert sharing your knowledge with others. I hope you continue to check in with us and let us know how you are doing.
Stay strong and know that you are already a survivor.
I love that! Cancer college, trying to find my classroom.
That ESS website has great information. I see that "Low-Grade" vs "high-Grade" classifications are in a way misnomers - they essentially are totally different types of cancers, with the low-grade being the "real" ESS and the high-grade being considered an undifferentiated carcinosacrcoma without the carcino features (?????). Yep..... Lots more to learn. There is a high rate of recurrence in "distant locations." So more surgeries likely in store for the future (ugh).
Estrogen is contraindicated and aromatase inhibitors are given, but if I understand correctly, the progesterone is a good thing (I am on estrogen and progesterone)...
I read conflicting stuff--that chemo & radiation have not been shown to help but others that radiation following chemo should be given treating the low-grade ESS (LGESS) like an aggressive cancer because of the high recurrence rate.... That is very conflicting! I already know my answer to that - NO.
And - LOL - Good luck "staging" the cancer "correctly" because I saw that new staging guidelines came out in 2010 (http://www.medscape.com/viewarticle/722721) and this being on an ovary and ONLY there (>5cm), is not even listed (it does not "extend to" - it is simply "there" - I'd rather think of it as stage I rather than II). I suspect that the oncologist, when we find one, won't know any more than what are in these research articles, which will give me low confidence in recommendations.
But yes, I am jumping ahead of myself. Monday, it will be 5 weeks since the surgery. I've not had an MRI or CT scan - just the initial ultrasound when they were actually looking for a kidney stone (LOL).
Now I am finding more, including something from Johns Hopkins Pathology about it that mentions a "primary ovarian neoplasm" which is what they consider mine:
". . . Endometrioid stromal sarcoma (ESS) is an extremely rare primary ovarian neoplasm. Among approximately 27 reported cases, 63% have been closely associated with endometriosis from which the tumor may have arisen. The mean patient age is 52 years. The mean tumor size is 10 cm. Over 70% present in advanced stage (FIGO II-III). Since primary uterine ESS is often slow growing and prone to late recurrence, it is important to consider the possibility of metastatic tumor from a uterine primary, even if the patient has had a hysterectomy in the remote past. The behavior appears to parallel that of advanced stage uterine ESS, although data are limited."
Anyway, I am waiting for approval to get on the Yahoo group for ESS. I'll update. Thanks - I am "already a survivor." I like that :-)
Staging:
Uterine Sarcomas (Leiomyosarcoma, Endometrial Stromal Sarcoma, and Adenosarcoma)
IA Tumor limited to uterus < 5 cm
IB Tumor limited to uterus > 5 cm
IIA Tumor extends to the pelvis, adnexal involvement
IIB Tumor extends to extra-uterine pelvic tissue
IIIA Tumor invades abdominal tissues, one site
IIIB More than one site
IIIC Metastasis to pelvic and/or para-aortic lymph nodes
IVA Tumor invades bladder and/or rectum
IVB Distant metastasis
-NJ0 -
You get an A for the dayNJW said:Cancer College
I love that! Cancer college, trying to find my classroom.
That ESS website has great information. I see that "Low-Grade" vs "high-Grade" classifications are in a way misnomers - they essentially are totally different types of cancers, with the low-grade being the "real" ESS and the high-grade being considered an undifferentiated carcinosacrcoma without the carcino features (?????). Yep..... Lots more to learn. There is a high rate of recurrence in "distant locations." So more surgeries likely in store for the future (ugh).
Estrogen is contraindicated and aromatase inhibitors are given, but if I understand correctly, the progesterone is a good thing (I am on estrogen and progesterone)...
I read conflicting stuff--that chemo & radiation have not been shown to help but others that radiation following chemo should be given treating the low-grade ESS (LGESS) like an aggressive cancer because of the high recurrence rate.... That is very conflicting! I already know my answer to that - NO.
And - LOL - Good luck "staging" the cancer "correctly" because I saw that new staging guidelines came out in 2010 (http://www.medscape.com/viewarticle/722721) and this being on an ovary and ONLY there (>5cm), is not even listed (it does not "extend to" - it is simply "there" - I'd rather think of it as stage I rather than II). I suspect that the oncologist, when we find one, won't know any more than what are in these research articles, which will give me low confidence in recommendations.
But yes, I am jumping ahead of myself. Monday, it will be 5 weeks since the surgery. I've not had an MRI or CT scan - just the initial ultrasound when they were actually looking for a kidney stone (LOL).
Now I am finding more, including something from Johns Hopkins Pathology about it that mentions a "primary ovarian neoplasm" which is what they consider mine:
". . . Endometrioid stromal sarcoma (ESS) is an extremely rare primary ovarian neoplasm. Among approximately 27 reported cases, 63% have been closely associated with endometriosis from which the tumor may have arisen. The mean patient age is 52 years. The mean tumor size is 10 cm. Over 70% present in advanced stage (FIGO II-III). Since primary uterine ESS is often slow growing and prone to late recurrence, it is important to consider the possibility of metastatic tumor from a uterine primary, even if the patient has had a hysterectomy in the remote past. The behavior appears to parallel that of advanced stage uterine ESS, although data are limited."
Anyway, I am waiting for approval to get on the Yahoo group for ESS. I'll update. Thanks - I am "already a survivor." I like that :-)
Staging:
Uterine Sarcomas (Leiomyosarcoma, Endometrial Stromal Sarcoma, and Adenosarcoma)
IA Tumor limited to uterus < 5 cm
IB Tumor limited to uterus > 5 cm
IIA Tumor extends to the pelvis, adnexal involvement
IIB Tumor extends to extra-uterine pelvic tissue
IIIA Tumor invades abdominal tissues, one site
IIIB More than one site
IIIC Metastasis to pelvic and/or para-aortic lymph nodes
IVA Tumor invades bladder and/or rectum
IVB Distant metastasis
-NJ
Dear NJ
How much you have learned so quickly! You are so ready for information, too. I love your spirit and your willingness to face your situation armed with knowledge. And you can still laugh in the face of uncertainty.
Sometimes I have to laugh just to keep from crying.
Take care and be well.
Carolen0 -
ovarian, endometrial stromal sarcoma
I was also diagnosed with this condition in March 2011. I was having pain on my right side and they discovered a mass on my ovary. They sent me to an oncologist to have the surgery since the mass was solid and liquid. Everyone including the surgeon was surprised that it was cancer, since there is no cancer on either side of my family. I also had a partial hysterectomy 6 years ago removing my uterus. They are looking again at the pathology from my uterus to see if they missed something 6 years ago. I have not got those results yet. They removed the tumor and I have now been on hormone therapy for about two weeks. I am currently taking Femara, it causes headaches but seems to be OK other than that so far for me. My doctor said I would be on the Femara for about a year and then we would reevaluate. I also will see him every 3 months, but not sure how much that will help, since my regular ob/gyn couldn't even feel the huge mass that was discovered and had apparently taken years (at least 6) to grow. Since this type of cancer is so rare, there isn't a lot known about it, so just looking on the internet to see what people are doing and how they are doing. What people are running into taking medications like Femara (suppresses estrogen).0 -
KWC -- HI!!!!!!KWC said:ovarian, endometrial stromal sarcoma
I was also diagnosed with this condition in March 2011. I was having pain on my right side and they discovered a mass on my ovary. They sent me to an oncologist to have the surgery since the mass was solid and liquid. Everyone including the surgeon was surprised that it was cancer, since there is no cancer on either side of my family. I also had a partial hysterectomy 6 years ago removing my uterus. They are looking again at the pathology from my uterus to see if they missed something 6 years ago. I have not got those results yet. They removed the tumor and I have now been on hormone therapy for about two weeks. I am currently taking Femara, it causes headaches but seems to be OK other than that so far for me. My doctor said I would be on the Femara for about a year and then we would reevaluate. I also will see him every 3 months, but not sure how much that will help, since my regular ob/gyn couldn't even feel the huge mass that was discovered and had apparently taken years (at least 6) to grow. Since this type of cancer is so rare, there isn't a lot known about it, so just looking on the internet to see what people are doing and how they are doing. What people are running into taking medications like Femara (suppresses estrogen).
I am so glad to find you!!! I have not yet gotten to get into the yahoo ESS-sarcoma group. I am not familiar with Yahoo and totally messed up with the e-mail and couldn't even get back into the account, created another, and am still waiting to get in.
I am afraid of aromatase inhibitors because of the long-term raised risks of no estrogen. Sigh.
I am not sure that there even was a pathology from removing my uterus... it was 16 years ago (sorry about saying 20 - I was wrong). It had been removed due to a humongous - truly humongous fibroid the size of the old seed watermelons - pressing against both ovaries. It hemorrhaged into the fibroid cavity - I could feel the blood actually sloshing around inside. They had to make an extra-long incision to remove the whole thing. I just don't remember a pathology report, but then, that doesn't mean anything - just that I do not remember one.
In any case, I read that this is probably from uterine ESS. My thinking is if it took years for it to "recur" - that is a good thing, right?
They did not expect cancer, so it was not an oncologist who did my surgery. All I'd had is an ultrasound and they thought it was a large fluid-filled cyst, but it was NOT!!! They ended up performing two operations back-to back on me that day... and here I am probably going to have another one with the oncologist.
KWC - How did they do the staging???
And to anyone, is "recurrence" at a different location the same as "metastasis" or is that something totally different?
NJ0 -
Staging and EstrogenNJW said:KWC -- HI!!!!!!
I am so glad to find you!!! I have not yet gotten to get into the yahoo ESS-sarcoma group. I am not familiar with Yahoo and totally messed up with the e-mail and couldn't even get back into the account, created another, and am still waiting to get in.
I am afraid of aromatase inhibitors because of the long-term raised risks of no estrogen. Sigh.
I am not sure that there even was a pathology from removing my uterus... it was 16 years ago (sorry about saying 20 - I was wrong). It had been removed due to a humongous - truly humongous fibroid the size of the old seed watermelons - pressing against both ovaries. It hemorrhaged into the fibroid cavity - I could feel the blood actually sloshing around inside. They had to make an extra-long incision to remove the whole thing. I just don't remember a pathology report, but then, that doesn't mean anything - just that I do not remember one.
In any case, I read that this is probably from uterine ESS. My thinking is if it took years for it to "recur" - that is a good thing, right?
They did not expect cancer, so it was not an oncologist who did my surgery. All I'd had is an ultrasound and they thought it was a large fluid-filled cyst, but it was NOT!!! They ended up performing two operations back-to back on me that day... and here I am probably going to have another one with the oncologist.
KWC - How did they do the staging???
And to anyone, is "recurrence" at a different location the same as "metastasis" or is that something totally different?
NJ
Actually the oncologist did not perform any staging since luckily the tumor was not attached to anything except my right ovary or I guess you could say it was part of my ovary. The tumor extended into my right fallopian tube just a little ways. They removed both ovaries and the fallopion tubes. He said he looked around and did not see any more tumors. I had a CT scan after the surgery and it did not show any other growths (was suppose to have it before the surgery, but I couldn't keep the liquid down you need to take for the scan). I did have an MRI before the surgery, but it does not show as much as a CT scan. It would be a good thing to have a CT scan before your surgery if possible in case there were any areas they would need to look at during surgery. That wasn't really explained to me, I would have been more insistent about trying other flavors to keep the stuff down at the time if I had known.
What are the long term risks of no estrogen? I have looked around and the only thing I can find is greater loss of bone mass than normal and it could affect your cholestorol. Let me know...
I also am trying to get into the ESS-sarcoma group, I just submitted my request today and I am not sure how long it takes to process it.
I am confused about what my prognosis will really be. I do have the low grade kind. It sounds like from my reading on the internet that this type has a high probability of reoccurrence and it could be years before it does. It almost sounds like the Femara suppresses the growth of any tumors but doesn't really cure you of the cancer. I am not sure what the Doctor's would determine a diagnosis of being cured is with this type. So many questions.... I am trying my very best to keep a positive attitude about all this though.
Glad I found you too!!!!
Kathy0 -
I realize now that we belongKWC said:Staging and Estrogen
Actually the oncologist did not perform any staging since luckily the tumor was not attached to anything except my right ovary or I guess you could say it was part of my ovary. The tumor extended into my right fallopian tube just a little ways. They removed both ovaries and the fallopion tubes. He said he looked around and did not see any more tumors. I had a CT scan after the surgery and it did not show any other growths (was suppose to have it before the surgery, but I couldn't keep the liquid down you need to take for the scan). I did have an MRI before the surgery, but it does not show as much as a CT scan. It would be a good thing to have a CT scan before your surgery if possible in case there were any areas they would need to look at during surgery. That wasn't really explained to me, I would have been more insistent about trying other flavors to keep the stuff down at the time if I had known.
What are the long term risks of no estrogen? I have looked around and the only thing I can find is greater loss of bone mass than normal and it could affect your cholestorol. Let me know...
I also am trying to get into the ESS-sarcoma group, I just submitted my request today and I am not sure how long it takes to process it.
I am confused about what my prognosis will really be. I do have the low grade kind. It sounds like from my reading on the internet that this type has a high probability of reoccurrence and it could be years before it does. It almost sounds like the Femara suppresses the growth of any tumors but doesn't really cure you of the cancer. I am not sure what the Doctor's would determine a diagnosis of being cured is with this type. So many questions.... I am trying my very best to keep a positive attitude about all this though.
Glad I found you too!!!!
Kathy
I realize now that we belong in the uterine section, but since we have started this thread here...
I THINK I have an answer to one of my questions... is recurrence and metastasis the same? Recurrence at the same site is not metastasis but when it is at another site (same cell type, though - like our endometrial on an ovary), it is metastasis.(?) I got this from Sloan Kettering Cancer Center: http://www.mskcc.org/mskcc/html/9415.cfm
~~Recurrence can refer to recurrence at the local site where the sarcoma first appeared or it can mean recurrence at another site (a metastasis), meaning that the tumor has spread.~~
As for the estrogen, from my "other life" (science/brain-related) :-) I know some research and cases showing some women sensitive to low estrogen levels which in them may contribute to late-onset schizophrenia (I have no idea why it is called "schizophrenia" if it can be relieved by estrogen) and dementia: Feb 2, 2011 - ~~Estrogen linked with lower dementia risk when taken in middle age, higher risk later in life~~ http://www.physorg.com/news/2011-02-estrogen-linked-dementia-middle-age.html
This may not be a worry for most women, but because of my background - yes - it is a concern I have - but not a huge concern. I am just not happy at the thought that we will already be so estrogen-depleted, but on the other hand, I also understand we get so much more estrogen and estrogen-like chemicals from our food and other environmental products, I can understand...
I have an anaphylactic allergic reaction to contrast (the liquid - a dye- I presume was what you were given to drink before the CT) That reaction was when I had it given in my vein many years ago. I wonder - why, if you could not keep the contrast down orally, why they didn't give it to you intravenously?
So what did the doctor call your stage?0 -
That is a good question, heNJW said:I realize now that we belong
I realize now that we belong in the uterine section, but since we have started this thread here...
I THINK I have an answer to one of my questions... is recurrence and metastasis the same? Recurrence at the same site is not metastasis but when it is at another site (same cell type, though - like our endometrial on an ovary), it is metastasis.(?) I got this from Sloan Kettering Cancer Center: http://www.mskcc.org/mskcc/html/9415.cfm
~~Recurrence can refer to recurrence at the local site where the sarcoma first appeared or it can mean recurrence at another site (a metastasis), meaning that the tumor has spread.~~
As for the estrogen, from my "other life" (science/brain-related) :-) I know some research and cases showing some women sensitive to low estrogen levels which in them may contribute to late-onset schizophrenia (I have no idea why it is called "schizophrenia" if it can be relieved by estrogen) and dementia: Feb 2, 2011 - ~~Estrogen linked with lower dementia risk when taken in middle age, higher risk later in life~~ http://www.physorg.com/news/2011-02-estrogen-linked-dementia-middle-age.html
This may not be a worry for most women, but because of my background - yes - it is a concern I have - but not a huge concern. I am just not happy at the thought that we will already be so estrogen-depleted, but on the other hand, I also understand we get so much more estrogen and estrogen-like chemicals from our food and other environmental products, I can understand...
I have an anaphylactic allergic reaction to contrast (the liquid - a dye- I presume was what you were given to drink before the CT) That reaction was when I had it given in my vein many years ago. I wonder - why, if you could not keep the contrast down orally, why they didn't give it to you intravenously?
So what did the doctor call your stage?
That is a good question, he really didn't say, but the mass was between 5 and 7 cm, with no invasion of surrounding organs, so I guess it would be on the low end on the stage scale.
They actually gave me a dye in my veins, but needed me to drink that stuff too. The second try (after my surgery) I mixed it with white grape juice and it wasn't really bad at all. I don't know what they mixed the first batch with while I was in the hospital, but it was really awful, I was also on morphine which makes me nauseated so that didn't help.
I heard from the other website we are trying to get on today, I had to give them a lot more info about me, my name, age, my diagnosis, my treatment, general area of where I lived and anything else you would like to share with them, before becoming a member... So when you try to submit your stuff again, be sure and include all that info..
Thanks for the info on the estrogen medication.
Hope you are doing well.0 -
Liquid stuff, morphine and more...KWC said:That is a good question, he
That is a good question, he really didn't say, but the mass was between 5 and 7 cm, with no invasion of surrounding organs, so I guess it would be on the low end on the stage scale.
They actually gave me a dye in my veins, but needed me to drink that stuff too. The second try (after my surgery) I mixed it with white grape juice and it wasn't really bad at all. I don't know what they mixed the first batch with while I was in the hospital, but it was really awful, I was also on morphine which makes me nauseated so that didn't help.
I heard from the other website we are trying to get on today, I had to give them a lot more info about me, my name, age, my diagnosis, my treatment, general area of where I lived and anything else you would like to share with them, before becoming a member... So when you try to submit your stuff again, be sure and include all that info..
Thanks for the info on the estrogen medication.
Hope you are doing well.
I think I messed up my membership attempt. I re-did it and at least this time I am now a "pending member" which shows I didn't even get that far before (I sure feel inept!)
Hmmm... Two different things for the CT scan? I am really curious about the oral stuff.
As for the morphine... I take phinergan along with narcotics. I already know they make me nauseous so I always say whenever I am scheduled for narcotics to get a prescriptic of it to take along with it. Of course, since I was unexpectedly NOT an outpatient after surgery - I was on IV and promptly started puking my empty stomach and dry heaving... not pleasant after some major abdominal surgery... so they just put the phinergan IV as well. Phinergan IV is NASTY (the veins they used for it are still discolored and lumpy 5 weeks later). Pills are much better as long as you aren't puking your guts up... which after the first dose I wasn't, but they didn't think to give it to me in a pill until they were destroying a second vein and I asked if they could PLEASE give it to me in a pill instead. "Sure." Sigh. Why didn't I THINK to ask sooner? I don't know... anyway, when I was sent home, I was sent with a prescription for both - narcotic and phinergan. That way - pain relief without nausea.0 -
hi Phxmom, this is a pretty old thread on the Ovarian board. If you have questions regarding Uterine/Endometrial cancer, I would invite you to visit that Discussion Board. I am a visitor from there and like to pop in to our other gyn cancer sister boards. Great and supportive women and family members there.
0
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