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Update becoming increasingly worried about my large cyst
Hi I recently posted on here about my 20cm cyst on right ovary & had lots of response. Here is update:-
12 yrs ago told I had PCOS.
Few months ago felt achy in back and lower groin.
Went to doctors 9 days ago, found swelling via internal & external examination, smear test came back clear,
2 days ago had ultrasound scan which showed a cyst of 20 by 17 by 13 cm in size
I have got an appointment with next Wednesday to discuss op.
Doctor phone me today and told me that they want me to have a CA125 blood test this afternoon.... Made me worry even more!
Then doctor continued to tell me that they cannot rule out ovarian cancer but they are hoping that it's not and that it's a 'hemorrhagic cyst' BUT the ultrasound scan shows it has 'Echoes'
What does this all mean?
12 yrs ago told I had PCOS.
Few months ago felt achy in back and lower groin.
Went to doctors 9 days ago, found swelling via internal & external examination, smear test came back clear,
2 days ago had ultrasound scan which showed a cyst of 20 by 17 by 13 cm in size
I have got an appointment with next Wednesday to discuss op.
Doctor phone me today and told me that they want me to have a CA125 blood test this afternoon.... Made me worry even more!
Then doctor continued to tell me that they cannot rule out ovarian cancer but they are hoping that it's not and that it's a 'hemorrhagic cyst' BUT the ultrasound scan shows it has 'Echoes'
What does this all mean?
It is possible it still could be wrong even if its normal, but they way you have to look at it is, if you had the most common form of ovarian cancer - serous cystadencarcinoma which accounts for 80% of ovarian cancers, it would most definately be elevated with this, as its a tumour marker for this type of cancer. ITs not a tumour maker for the rarer ovarian cancers, and you must think that ovarian cancer is rare to begin with, so to then also have a rare form of a rare cancer is even more high unlikely and mean the odds are massively in your favour. Mine CA125 came back at 8. Normal is between 0-35.
However, endometriosis or other benign inflamations of the pelvis can greatly elevate CA125 too, so its just not the greatest test, my Gyno said he wasnt even concerned about doing the CA125 as he didnt think it was reliable and he just said lets just get the growth removed, however my GP had ordered it and I had it done, it was still a relief to know it came back normal.
I think its useful for them to use moreso if you are past menopause, your scan pics look very much like a serous cyst, (even though only pathology can determine true diagnosis) and it good to find out your level before surgery, so if it is anything, they know your level before surgery and its more of a marker to track it rising or reducing after surgery.
Yes the waiting and the not knowing is definatley the worst part, I so know how that feels. I really do send you lots of wishes and hope you can find some calmness over the next two weeks xx
However, endometriosis or other benign inflamations of the pelvis can greatly elevate CA125 too, so its just not the greatest test, my Gyno said he wasnt even concerned about doing the CA125 as he didnt think it was reliable and he just said lets just get the growth removed, however my GP had ordered it and I had it done, it was still a relief to know it came back normal.
I think its useful for them to use moreso if you are past menopause, your scan pics look very much like a serous cyst, (even though only pathology can determine true diagnosis) and it good to find out your level before surgery, so if it is anything, they know your level before surgery and its more of a marker to track it rising or reducing after surgery.
Yes the waiting and the not knowing is definatley the worst part, I so know how that feels. I really do send you lots of wishes and hope you can find some calmness over the next two weeks xx
Thank u again Yvonne, I think I'm going out of my mind :-/
So basically if my ca125 comes back normal it could still be wrong???? How confusing! Doesn't help that hospital called me today and had to change date of consultation to the week after next grrrr....
I'm so pleased for u that ur results were good for u that's reassuring to know :-)
Since the scan on Tuesday my inside have been aching like crazy and I seem to be snapping at everyone coz I'm so stressed :-/ I don't mean to but it's just the waiting and not knowing.
Xx
So basically if my ca125 comes back normal it could still be wrong???? How confusing! Doesn't help that hospital called me today and had to change date of consultation to the week after next grrrr....
I'm so pleased for u that ur results were good for u that's reassuring to know :-)
Since the scan on Tuesday my inside have been aching like crazy and I seem to be snapping at everyone coz I'm so stressed :-/ I don't mean to but it's just the waiting and not knowing.
Xx
Hi Katy,
I also had a CA125 test, they do this on any cyst that is over 5cm that contains echoes, it is standard in the UK. Echoes are basically white shadows that highlights solid parts, if the cyst showed completely black on the screen this would mean it is purely fluid filled.
My cyst showed mixed echoes which was very worrying and it turned out benign no malignancy! I also had the CA125 test and it came back normal. The CA125 can be elevated for other normal benign conditions such as endometriosis, so its not an accurate test, it gives false negaties and false positives, but they still continue to use it. It only tends to pick up the most common type of ovarian cancer which is serous cystadencarcinoma. Most serous or mucinous cysts that show echoes (solid parts) are benign. These are cysts that form on the outer surface of the ovary.
My cyst was a dermoid cyst (Orginally they thought mine was a endometrioma or hemorrhagic cyst), and was inside my ovary, it contained yellow greasy fluid and bone! So it showed as mixed solid echoes on scan and I was worried out my mind, but my Gyno wasnt! he explained just because it shows echoes/shadows doesnt mean I have cancer, and 99% it wont be cancer and he was right. Yes they cannot rule out cancer completely, there is a small risk there, but like he explained to me there are risks with everything in life.
Solid echoes are more of a concern than purely fluid filled cysts because:
They will never go away (unless hemmoraghic) by themselves
They can twist on the ovary and cause pain
They can burst and cause infection in the pelvis
There is a small risk of cancer vs if it was purely fluid filled, but 95 - 99% of these still turn out to be benign.
I truly know how you must be feeling, I went through it for 5 months (as I had to wait for surgery because I am pregnant) and the waiting is the worst part, the not knowing. I can really sympathise, and its easy for other people to say dont worry, because you will until its out.
Only pathology on the cyst will truly determine what cells it contains. When you have had it removed you will feel much better. I only had mine removed last week, and only got my results yesterday, that week was my final week of waiting, and when I got the results yesterday it was such a relief and realised I had worried insanely for no reason, my Gyno was right and I dis-trusted him quite alot and questioned all his opinions, even though he has an excellent reputation.
I am not sure if an underactive thyroid would have any connection, this is something maybe only your doctor can answer.
Try and keep yourself busy to take your mind off things, it will be hard, but I tried to think to myself I never knew I had the cyst until a random scan, so I tried to think I didnt have it, I never had fluid in my pelvis (which can be a sign of cancer) and my CA125 was not raised, so I tried to keep thinking about the positive things until I had my surgery.
I will wish for you, I really know how you feel, quicker its out the better you will feel and it will be all over.
Please let me know how you are getting on.
Yvonne
I also had a CA125 test, they do this on any cyst that is over 5cm that contains echoes, it is standard in the UK. Echoes are basically white shadows that highlights solid parts, if the cyst showed completely black on the screen this would mean it is purely fluid filled.
My cyst showed mixed echoes which was very worrying and it turned out benign no malignancy! I also had the CA125 test and it came back normal. The CA125 can be elevated for other normal benign conditions such as endometriosis, so its not an accurate test, it gives false negaties and false positives, but they still continue to use it. It only tends to pick up the most common type of ovarian cancer which is serous cystadencarcinoma. Most serous or mucinous cysts that show echoes (solid parts) are benign. These are cysts that form on the outer surface of the ovary.
My cyst was a dermoid cyst (Orginally they thought mine was a endometrioma or hemorrhagic cyst), and was inside my ovary, it contained yellow greasy fluid and bone! So it showed as mixed solid echoes on scan and I was worried out my mind, but my Gyno wasnt! he explained just because it shows echoes/shadows doesnt mean I have cancer, and 99% it wont be cancer and he was right. Yes they cannot rule out cancer completely, there is a small risk there, but like he explained to me there are risks with everything in life.
Solid echoes are more of a concern than purely fluid filled cysts because:
They will never go away (unless hemmoraghic) by themselves
They can twist on the ovary and cause pain
They can burst and cause infection in the pelvis
There is a small risk of cancer vs if it was purely fluid filled, but 95 - 99% of these still turn out to be benign.
I truly know how you must be feeling, I went through it for 5 months (as I had to wait for surgery because I am pregnant) and the waiting is the worst part, the not knowing. I can really sympathise, and its easy for other people to say dont worry, because you will until its out.
Only pathology on the cyst will truly determine what cells it contains. When you have had it removed you will feel much better. I only had mine removed last week, and only got my results yesterday, that week was my final week of waiting, and when I got the results yesterday it was such a relief and realised I had worried insanely for no reason, my Gyno was right and I dis-trusted him quite alot and questioned all his opinions, even though he has an excellent reputation.
I am not sure if an underactive thyroid would have any connection, this is something maybe only your doctor can answer.
Try and keep yourself busy to take your mind off things, it will be hard, but I tried to think to myself I never knew I had the cyst until a random scan, so I tried to think I didnt have it, I never had fluid in my pelvis (which can be a sign of cancer) and my CA125 was not raised, so I tried to keep thinking about the positive things until I had my surgery.
I will wish for you, I really know how you feel, quicker its out the better you will feel and it will be all over.
Please let me know how you are getting on.
Yvonne
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