Aa
cancer vs cyst- conflicting reports
Ultrasound and CT scan show Left ovarian cyst. PET scan shows a very hypermetabolic mass ( SUV 10)
CA-125 was 9.
Help !
CA-125 was 9.
Help !
oh donna i pray for u in earnest .. we all know that fear and the waiting ... please know that no matter how much worry, what ever mass that is in there "is what it is" (if that even made sense) ... spend ur time preop loving those u love and enjoying all u enjoy ,,, good or bad there will be people in ur life or here on the internet to help u ... in my preop i got one of those surgical gloves and blew it up and wrote on it with a sharpie "when in doubt cut it out" as a reminder to the doc and put it under my gown .. they caught me before the OR but i went to sleep imaging their surprise :)
Kevin, thank you so much for taking the time for that informative and well thought out response. I did have a pelvic US ( Inc TV ) back in April after I saw my regular GYN for pelvic pain. It was read as having bilateral ovarian cysts. I am a MRI Technologists and I knew the radiologist who read it, so after the PET came back SO positive I had her take another look at it. She said she still felt like I had bilat cysts and color flow doppler looked good too. The problem is the PET is showing veryhigh metabolic activity of over 10 SUV. Also, CT scan showed bilat ovarian cysts.
I am currently scheduled for surgery on Monday by a GYN ONCO. She is going to start out laparascopically and take out the ovary and send off a frozen section. If it's positive she's going to open up my abdomen and do a full hysterectomy with staging. I'd appreciate any prayers that anyone can send my way. I'm very scared and the idea of going to sleep not knowing and waking up to news is terrifying.
Thanks to all for your reponses
Donna
I am currently scheduled for surgery on Monday by a GYN ONCO. She is going to start out laparascopically and take out the ovary and send off a frozen section. If it's positive she's going to open up my abdomen and do a full hysterectomy with staging. I'd appreciate any prayers that anyone can send my way. I'm very scared and the idea of going to sleep not knowing and waking up to news is terrifying.
Thanks to all for your reponses
Donna
woops!
calcium oxalayse and uric acid..thought stones.
Went for US pelvic and renal, and TV.
renal neg, TV showed complex paraovarian complex mass 2.4. at the left adnexa, No free fluid Small 8mm within ovary. Now it has been a month and pain is down to an ache.
One doc shrugs her shoulders and says no biggy. Wants to do an endometrial biopsy because the stripe is 7.4.( hx of fibroids, endometrious, no bleeding, nothing, all cultures neg)
Another did a CA 125 (awaiting results). States you cant always tell from TV..he thinks is benign endometrious mass, and adhesions..possibly on bowel. He proceeds to inform me of all the possiblities of potential knicking of the bowel, bladder, etc. (he performs robotic surgery) Not concerned about uterus..thinks is remnants of endo and fibroids. So he can tell this from a TV, but not the ovary?
Sent reports to gyn/onco who stated I wasnt a cadidate for the busy practice based on this info.
Sooo..when I told the one who wants to operate, I think I would wait it out..he throws out the possible CA...now my head is spinning! I dont want to rush into a surgery unless absolutely necessary.
If I can avoid this surgery I would...does anyone have any input?
Thanks all!
calcium oxalayse and uric acid..thought stones.
Went for US pelvic and renal, and TV.
renal neg, TV showed complex paraovarian complex mass 2.4. at the left adnexa, No free fluid Small 8mm within ovary. Now it has been a month and pain is down to an ache.
One doc shrugs her shoulders and says no biggy. Wants to do an endometrial biopsy because the stripe is 7.4.( hx of fibroids, endometrious, no bleeding, nothing, all cultures neg)
Another did a CA 125 (awaiting results). States you cant always tell from TV..he thinks is benign endometrious mass, and adhesions..possibly on bowel. He proceeds to inform me of all the possiblities of potential knicking of the bowel, bladder, etc. (he performs robotic surgery) Not concerned about uterus..thinks is remnants of endo and fibroids. So he can tell this from a TV, but not the ovary?
Sent reports to gyn/onco who stated I wasnt a cadidate for the busy practice based on this info.
Sooo..when I told the one who wants to operate, I think I would wait it out..he throws out the possible CA...now my head is spinning! I dont want to rush into a surgery unless absolutely necessary.
If I can avoid this surgery I would...does anyone have any input?
Thanks all!
Thank you for your most informative post! I hope that your wife is doing well, and she is most fortunate to have you for her advocate.
I am curious what symptoms if any was your wife experiencing that brought her to finding the mass and also her age?
I am a (young, lol) 60, 20 years postmenopausal and I presented with SEVERE addominal pain June 1. hoping for some input, as every doctor I speak to has a different theory!
First they thought UTI..treated me for that, until they got the culture which showed calcium oxalyase and u.
Thought
I am curious what symptoms if any was your wife experiencing that brought her to finding the mass and also her age?
I am a (young, lol) 60, 20 years postmenopausal and I presented with SEVERE addominal pain June 1. hoping for some input, as every doctor I speak to has a different theory!
First they thought UTI..treated me for that, until they got the culture which showed calcium oxalyase and u.
Thought
Donna
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 and her mass was 3.5cm.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). A transvaginal ultrasound (TV) is the most valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts. Cysts, hemorrhagic cysts, endometriomas, and dermoids have a high predictive diagnosis via TV ultrasound. Get a copy of your TV(you are entitled to it) and post the exact results
An MRI is usually the next test that should be given as they are more precise when read by the right radiologist. I am puzzeled why they did a PET scan instead of an MRI,were you not able to have an MRI?
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 cuases 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. Please make sure you have your blood drawn for the following blood tests,Inhibin A&B, CA125 and CEA so at the very least you have baseline blood work.
Since there is some suspicion based on your TV-sonogram 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 to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
Steffers1088 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 and willing to help guide you thru this
Kevin
.
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 and her mass was 3.5cm.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). A transvaginal ultrasound (TV) is the most valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts. Cysts, hemorrhagic cysts, endometriomas, and dermoids have a high predictive diagnosis via TV ultrasound. Get a copy of your TV(you are entitled to it) and post the exact results
An MRI is usually the next test that should be given as they are more precise when read by the right radiologist. I am puzzeled why they did a PET scan instead of an MRI,were you not able to have an MRI?
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 cuases 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. Please make sure you have your blood drawn for the following blood tests,Inhibin A&B, CA125 and CEA so at the very least you have baseline blood work.
Since there is some suspicion based on your TV-sonogram 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 to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
Steffers1088 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 and willing to help guide you thru this
Kevin
.
I am actually having the ovary removed on Monday laparascopically. If it's poitive for ca then they will open me up and do a full hysterectomy and staging biopsies. This is being done by a GYN Oncologist.
The doctors are puzzled b/c it clearly looks like a cyst on CT and on Ultrasound. The radiologist who read the US actually went back and took a second look at the images and the color doppler and said all looked good. The problem is my PET shows a very high SUV of 10. Hence, surgery on Monday. For any of you spiritual folks out there, I'd appreciate some prayers.
Thanks for your feedback.
Donna
The doctors are puzzled b/c it clearly looks like a cyst on CT and on Ultrasound. The radiologist who read the US actually went back and took a second look at the images and the color doppler and said all looked good. The problem is my PET shows a very high SUV of 10. Hence, surgery on Monday. For any of you spiritual folks out there, I'd appreciate some prayers.
Thanks for your feedback.
Donna
What does your doctor say? How large is your mass? CA-125 is not reliable pre-diagnosis. You can get both false positives and false negatives. It is a good tool for monitoring recurrence in women who had it elevated before their tumor was removed. Scans don't always tell the whole picture either. PET scans can also give false positives and false negatives. Benign masses often give worrisome results. The only way to know for sure is to remove the mass and complete a biopsy.
If your CT showed a 5cm or larger complex mass then you should be referred to a gynecologic oncologist and have surgical removal of your mass, regardless of your CA-125 result or PET scan findings. If your mass is smaller, then you will have to work with your doctor to try to determine your risk in watching and waiting. Hopefully, your doctor can clarify the results. Good luck to you!
If your CT showed a 5cm or larger complex mass then you should be referred to a gynecologic oncologist and have surgical removal of your mass, regardless of your CA-125 result or PET scan findings. If your mass is smaller, then you will have to work with your doctor to try to determine your risk in watching and waiting. Hopefully, your doctor can clarify the results. Good luck to you!
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