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"Stable" Complex Cyst ??
I have a scheduled "open" surgery soon for the removal of my ONLY remaining ovary. My oncologist said, after ultasound& CT , that my cyst was "stable" but needs to come out. No reports say what type cyst I have . Its only 2.4 cm w my ovary measuring 5.3 x2.7.
My maternal grandmother died within 3 weeks of finding ovarian cancer when she in her early 60's.
I am 39.. (Normal weight etc)... & had full hyst at 28 (after my two children were born) leaving me with one ovary remaining after years of endometrial trouble.
I am struggling with this surgery as I am greatly uneased by having my only ovary removed. I have Lupus, Sjogrens& Raynauds and currently out of remission as I discovered i am far below norm in WBC, a problem w Lupus patients.
They found my pain free cyst when looking for other causes of my nocturnal pain, urgent urination& abdominal distention. All of which appeared out of no where. I thought my bladder fell or something when i went in. No pain at all. Less appetite, horrid nocturnal pain in hips, back et.al& frequently have IBS trouble. The urologist cleared me yesterday after cystoascope & said they have nothing they can see thats causing me to practically wet myself when i get the urge to go.:( Truly that anxiety of making it to a bathroom led me to investigate. All anyone has found is that cyst & a small fistula... Aside from lupus pains Im healthy...
My question is this... What is a "stable" complex cyst? Why is my ovary so large? And with a normal CA125 & no free fluid, shoukd I be worried about them finding cancer? Does Estrogen therapy work? Im petrified to go into Menopause so young & exacerbating my other known illness... Oncologist said until he sees my cyst at surgery & pathology comes back, there cant be any 100% guarantee... But im worried. Not sure what "stable" means.. Given my grandmothers death from ovarian cancer at a relatively young age... Im scared.
Please, any feedback would be so appreciated!
Xoxo
My maternal grandmother died within 3 weeks of finding ovarian cancer when she in her early 60's.
I am 39.. (Normal weight etc)... & had full hyst at 28 (after my two children were born) leaving me with one ovary remaining after years of endometrial trouble.
I am struggling with this surgery as I am greatly uneased by having my only ovary removed. I have Lupus, Sjogrens& Raynauds and currently out of remission as I discovered i am far below norm in WBC, a problem w Lupus patients.
They found my pain free cyst when looking for other causes of my nocturnal pain, urgent urination& abdominal distention. All of which appeared out of no where. I thought my bladder fell or something when i went in. No pain at all. Less appetite, horrid nocturnal pain in hips, back et.al& frequently have IBS trouble. The urologist cleared me yesterday after cystoascope & said they have nothing they can see thats causing me to practically wet myself when i get the urge to go.:( Truly that anxiety of making it to a bathroom led me to investigate. All anyone has found is that cyst & a small fistula... Aside from lupus pains Im healthy...
My question is this... What is a "stable" complex cyst? Why is my ovary so large? And with a normal CA125 & no free fluid, shoukd I be worried about them finding cancer? Does Estrogen therapy work? Im petrified to go into Menopause so young & exacerbating my other known illness... Oncologist said until he sees my cyst at surgery & pathology comes back, there cant be any 100% guarantee... But im worried. Not sure what "stable" means.. Given my grandmothers death from ovarian cancer at a relatively young age... Im scared.
Please, any feedback would be so appreciated!
Xoxo
Looks like you've gotten some great information already. I just wanted to add a few things from my own personal experience.
I had many bladder issues myself and was checked about two years before I had my radical hysterectomy in 2000. No problems were found. My problems were hard to catagorize because my problem had to do with what I guess I could call, "Anytime Leaking" and although urgency was a part of this, there were no problems when I coughed or sneezed (I got asked that many, many times). Right before my surgery I was checked again because I'd mentioned the ongoing problem and the Oncologist said she would do a bladder repair surgery along with everything else, but again, the Urologist I saw found nothing.
Things were better after my surgery but I suspect it had more to do with a steady stream of hormonal help, which I was able to use, than the surgery itself. I was checked again about four years later when the leaking started again, but once again, no problems were found. However, once the doctor I was seeing for hormonal issues corrected an imbalance, I was okay again. I struggle with this from time to time now but it's nothing like it was before my surgery. I was 47 when I had my surgery, but again, this bladder issue had been going on for a few years and I suspect that the hormonal drops and imbalances that occur during peri-menopause, which can affect the lining of the bladder as well as the lining of the vaginal walls (all of which would have a link to the efficacy of the bladder) was the root cause of my issues.
There is a vaginal type of Estradiol that is helpful to some women which could be used either alone or with an overall systemic estradiol support, but again, I realize that not everyone is able to use these products. Some of the research I've read indicated that the vaginal estradiol (in the form of a cream usually) does not affect overall estrogen levels, but is helpful in tightening that area and keeping it moist and supple.
Click on my name to view my profile and read my story if only to get the name of the book that has been so helpful to me particulary over the past few years. Actually, that information would be in my journal entries... I only have three entries, so it should be easy to find.
Best of luck to you,
Mary
I had many bladder issues myself and was checked about two years before I had my radical hysterectomy in 2000. No problems were found. My problems were hard to catagorize because my problem had to do with what I guess I could call, "Anytime Leaking" and although urgency was a part of this, there were no problems when I coughed or sneezed (I got asked that many, many times). Right before my surgery I was checked again because I'd mentioned the ongoing problem and the Oncologist said she would do a bladder repair surgery along with everything else, but again, the Urologist I saw found nothing.
Things were better after my surgery but I suspect it had more to do with a steady stream of hormonal help, which I was able to use, than the surgery itself. I was checked again about four years later when the leaking started again, but once again, no problems were found. However, once the doctor I was seeing for hormonal issues corrected an imbalance, I was okay again. I struggle with this from time to time now but it's nothing like it was before my surgery. I was 47 when I had my surgery, but again, this bladder issue had been going on for a few years and I suspect that the hormonal drops and imbalances that occur during peri-menopause, which can affect the lining of the bladder as well as the lining of the vaginal walls (all of which would have a link to the efficacy of the bladder) was the root cause of my issues.
There is a vaginal type of Estradiol that is helpful to some women which could be used either alone or with an overall systemic estradiol support, but again, I realize that not everyone is able to use these products. Some of the research I've read indicated that the vaginal estradiol (in the form of a cream usually) does not affect overall estrogen levels, but is helpful in tightening that area and keeping it moist and supple.
Click on my name to view my profile and read my story if only to get the name of the book that has been so helpful to me particulary over the past few years. Actually, that information would be in my journal entries... I only have three entries, so it should be easy to find.
Best of luck to you,
Mary
Kevin,
Thank you for the thoughtful , insightful reply! You've given me much to think about & consider . Your wife is very lucky her husband is so informed and a soldier in her advocacy! Brava!
My surgery is this week& I do have a gyno/onco :-) just wish I knew what this mass was but I'll learn soon enough:(.. I'll update when pathology report comes in...
My best ..
Tara
Thank you for the thoughtful , insightful reply! You've given me much to think about & consider . Your wife is very lucky her husband is so informed and a soldier in her advocacy! Brava!
My surgery is this week& I do have a gyno/onco :-) just wish I knew what this mass was but I'll learn soon enough:(.. I'll update when pathology report comes in...
My best ..
Tara
I am sorry you have to go threw this it is very stressfull to have this hanging over your head. Keep in mind most cysts are benign !!
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 and I know what it feels like to not know what the next step is. Here is a quick overview.
Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx).
The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other causes of inflamation..
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal.
Unfortunately with any type of suspected ovarian mass/tumor/ suspicious cyst(s) surgery will be the only way for the Dr's too make a definitive Dx.
*****It is NOT recommended to biopsy any ovarian mass/tumor/suspicious cyst as it can rupture and seed the pelvis with cancer cells if that what it turns out to be. **********
.
******************************************************************************************************
Since there is some suspicion I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients. This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure #####PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal. ######
****************************************************************************************************
Next: From experience I would be asking for an MRI of the abdomen/pelvis ,MRI's are very precise when read by a **Radiologist that specializes in GYN/ONC**, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC(specializes in cancer only) to see a GYN/ONC surgeon who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
My wife went in medically induced menopause and her gyn-onc gave her small doses of estrogen therapy. You have to be carefull as some ovca (not saying you have) thrive on estrogen, if it is ovca then they should also see if the tumor is estrogen sensitive.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results as you are entitled to them. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best.
Kevin
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 and I know what it feels like to not know what the next step is. Here is a quick overview.
Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx).
The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other causes of inflamation..
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal.
Unfortunately with any type of suspected ovarian mass/tumor/ suspicious cyst(s) surgery will be the only way for the Dr's too make a definitive Dx.
*****It is NOT recommended to biopsy any ovarian mass/tumor/suspicious cyst as it can rupture and seed the pelvis with cancer cells if that what it turns out to be. **********
.
******************************************************************************************************
Since there is some suspicion I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients. This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure #####PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal. ######
****************************************************************************************************
Next: From experience I would be asking for an MRI of the abdomen/pelvis ,MRI's are very precise when read by a **Radiologist that specializes in GYN/ONC**, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC(specializes in cancer only) to see a GYN/ONC surgeon who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
My wife went in medically induced menopause and her gyn-onc gave her small doses of estrogen therapy. You have to be carefull as some ovca (not saying you have) thrive on estrogen, if it is ovca then they should also see if the tumor is estrogen sensitive.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results as you are entitled to them. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best.
Kevin
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