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Rising High CA125 and complex cyst
Hello, I am scared to even type this email.
Some months ago I attended for a ultrasound where a 3 x 3.2cm cyst was found on my ovary. 2 months later I had a repeat one where the cyst was now 3.5cm and I was also tested for CA125 - my levels were 150. At the time I had no idea what this meant and was referred to another hospital a month later. I attended last week. The cyst has grown again - it is now 3.7cm and contains 2 solid masses and my CA125 level has increased to 225. I have an operation scheduled for next tuesday to remove the cyst and possibly the ovary. I am now terrified of the operation but also of the results. I am 34 years old, have no chikldren adn have not taken the pill for about 10 years. I am so scared I have got cancer. My consultant couldnt offer any reassurance and said that the outcome would not be known until the cyst and possibly ovary have been tested. Im so scared they will open me up and find cancer everywhere, I cant sleep or concentrate on anything and I know that after the operation Ive got an agoinsing wait to get the results. UP till this posint I knew nothing about cyst or ovaries but have scared myself into a state by reading evrything I can on it. Has anyone had a similar situation where this oculd be benign. Ive read that endometriosis is one possibility but have had no symptoms and wouldnt this show up on the ultrasound?
Love Melissa x
Some months ago I attended for a ultrasound where a 3 x 3.2cm cyst was found on my ovary. 2 months later I had a repeat one where the cyst was now 3.5cm and I was also tested for CA125 - my levels were 150. At the time I had no idea what this meant and was referred to another hospital a month later. I attended last week. The cyst has grown again - it is now 3.7cm and contains 2 solid masses and my CA125 level has increased to 225. I have an operation scheduled for next tuesday to remove the cyst and possibly the ovary. I am now terrified of the operation but also of the results. I am 34 years old, have no chikldren adn have not taken the pill for about 10 years. I am so scared I have got cancer. My consultant couldnt offer any reassurance and said that the outcome would not be known until the cyst and possibly ovary have been tested. Im so scared they will open me up and find cancer everywhere, I cant sleep or concentrate on anything and I know that after the operation Ive got an agoinsing wait to get the results. UP till this posint I knew nothing about cyst or ovaries but have scared myself into a state by reading evrything I can on it. Has anyone had a similar situation where this oculd be benign. Ive read that endometriosis is one possibility but have had no symptoms and wouldnt this show up on the ultrasound?
Love Melissa x
I hope all goes well for you next week, Mel. When I was first told I had a compex cyst of 6 cm on the one side and that they could not rule out cancer, I spent the next few weeks tormented over it. I worked myself up inside to such a stage. I didn't have a high CA125 reading but was told this did not mean it could not be cancer. However, I believe the opposite is also true and that you can have a low result and there still be the presence of cancer.
I can't tell you not to be terrified of the outcome as clearly no-one will know this for certain until they get in there to look - but I do know that a high CA125 result can often mean the presence of Endometriosis. I was told I had two cysts - a clear one at 4cm and a complex one with an undetermined mass of 6cm - but the laparoscopy showed endometriosis which is apparently not usually picked up on a scan. So I hope that will be outcome for you.
I can tell you not to be terrified about the surgery as, honestly, there is not a lot to it and you will be fine.
Good luck and keep us posted!
Hellen
x
I can't tell you not to be terrified of the outcome as clearly no-one will know this for certain until they get in there to look - but I do know that a high CA125 result can often mean the presence of Endometriosis. I was told I had two cysts - a clear one at 4cm and a complex one with an undetermined mass of 6cm - but the laparoscopy showed endometriosis which is apparently not usually picked up on a scan. So I hope that will be outcome for you.
I can tell you not to be terrified about the surgery as, honestly, there is not a lot to it and you will be fine.
Good luck and keep us posted!
Hellen
x
Hi Melissa,
I am so sorry to hear of your recent health reports. It is very scary to be in that waiting place. The CA-125 is a tricky test. It can be elevated in benign conditions. But, of course, when it increases in addition to an ovarian mass, it is important to get surgery as soon as possible. I see you are in England and I know your health system differs from ours in the US. In the US, seeing a gynecologic oncologist is recommended for any cyst that has a "chance" of being malignant. But, the truth is that most ob/gyns are very skilled at removing these tumors. If you don't have gyn/onc, you will want ot ask your surgeon what will be done if your frozen section shows malignancy. If possible, you can request that a gynecologic oncologist be on call if needed. Here are a couple of links that will help you formulate questions for your doctor:
http://oreilly.com/medical/news/ovarian_ten_things.html
http://www.wcn.org/articles/treatment/gynecologic_oncologists/overview/
I was diagnosed with Stage 1a ovarian cancer 3 1/2 years ago when I was 37. The good news is that surgery was my treatment and I did not have to have chemo or radiation. So, despite what you read on the internet, please remember there is much hope for you even if you get an ovca dx. That said, it really could still be a benign condition. So, please try to keep your mind busy watching movies, being with friends and family, etc. This will help pass the time until your surgery. I will be praying that you have a benign outcome and look forward to hearing an update from you.
Take care,
Shelly
I am so sorry to hear of your recent health reports. It is very scary to be in that waiting place. The CA-125 is a tricky test. It can be elevated in benign conditions. But, of course, when it increases in addition to an ovarian mass, it is important to get surgery as soon as possible. I see you are in England and I know your health system differs from ours in the US. In the US, seeing a gynecologic oncologist is recommended for any cyst that has a "chance" of being malignant. But, the truth is that most ob/gyns are very skilled at removing these tumors. If you don't have gyn/onc, you will want ot ask your surgeon what will be done if your frozen section shows malignancy. If possible, you can request that a gynecologic oncologist be on call if needed. Here are a couple of links that will help you formulate questions for your doctor:
http://oreilly.com/medical/news/ovarian_ten_things.html
http://www.wcn.org/articles/treatment/gynecologic_oncologists/overview/
I was diagnosed with Stage 1a ovarian cancer 3 1/2 years ago when I was 37. The good news is that surgery was my treatment and I did not have to have chemo or radiation. So, despite what you read on the internet, please remember there is much hope for you even if you get an ovca dx. That said, it really could still be a benign condition. So, please try to keep your mind busy watching movies, being with friends and family, etc. This will help pass the time until your surgery. I will be praying that you have a benign outcome and look forward to hearing an update from you.
Take care,
Shelly
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