Sabriste
07-07-2009, 02:28 PM
Hello all! A few months ago I was diagnosed with PCOS (after randomly going to the doctor about having trouble losing weight). I thought it was crazy at first. I thought maybe I just had the syndrome with no cysts or anything like that. Well, they sent me for an ultrasound and it turns out I have a 14cm cyst with, apparently, something about the echo readings that required further testing. So I had an abdominal CT scan done, and then a pelvic exam by my GYN (she said it was "impressive"...yikes!). Well, I just got the results back from the CT scan and they said the "pelvic mass" required further evaluation, so they've scheduled me for an MRI. I'm supposed to have a laparatomy next month.
I'm getting a little nervous about all of this...to have gone from one month thinking everything was fine in the world to learning I have PCOS and could potentially have all kinds of problems, to finding out I have this enormous cyst, then to have all these tests, including all kinds of blood tests.
I'm just wondering what all these tests could mean...if anyone has any ideas? The CT scan and MRI have both been ordered by the staff after briefly talking to me on the phone, so I haven't had a chance yet to talk to my GYN about what they're looking for. I'm 27, so I know the chance of it being cancerous are small, but I don't know. Why would they need an ultrasound and a CT and an MRI? Any help would be great. I'm trying to stay positive and not worry too much, but it's getting hard.
Sabriste
I'm getting a little nervous about all of this...to have gone from one month thinking everything was fine in the world to learning I have PCOS and could potentially have all kinds of problems, to finding out I have this enormous cyst, then to have all these tests, including all kinds of blood tests.
I'm just wondering what all these tests could mean...if anyone has any ideas? The CT scan and MRI have both been ordered by the staff after briefly talking to me on the phone, so I haven't had a chance yet to talk to my GYN about what they're looking for. I'm 27, so I know the chance of it being cancerous are small, but I don't know. Why would they need an ultrasound and a CT and an MRI? Any help would be great. I'm trying to stay positive and not worry too much, but it's getting hard.
Sabriste
Sponsor
estria
07-09-2009, 09:00 AM
Sabriste,
Have they also ordered a blood test called the CA-125 ? This is a test that looks for a specific cancer antigen that is usually present in high numbers when ovarian cancer is present. 35 and under is normal. Unfortunately, premenopausal women have a greater chance of having either a false positive (where you score high and there is no cancer) or a false negative (where you score normal and there is stage 1 ovarian cancer) than post menopausal women. However, this can nevertheless be a source of additional information and I am rather surprised that your doctors have not requested this test.
Usually the ultrasound is the gold standard for ovarian cysts and the only reason I can think of to do the MRI would be to check out the rest of that area and be sure there is nothing that the ultrasound may have missed. I am not sure why they would call for both a CT scan AND an MRI so perhaps you should ask your doctor about this.
Was the ultrasound that you had an external ultrasound or an intravaginal one ? If it was external, you should get an internal one so that they can get a closer and clearer look at the cyst AND they can do a doppler flow analysis where they see if there is any blood flow to the cyst (cancerous lesions usually have what is called angiogenesis where they create bloodflow connections .. a lesion with no blood flow is less likely to be cancerous). The CA-125 and the doppler flow will definitely give them more information on this growth (oh and don't worry, I think they refer to almost anything as a mass .. it's a worrisome term for us patients but quite general as far as medical terms go .. it can still be a benign mass).
You are right in that someone of your age is very unlikely to have ovarian cancer. Most cases occur in women around the 60 age range. However, there are more benign forms of ovarian cancer that may affect younger women. For example, a borderline cancer is usually removed and the situation is completely cured (no chemo necessary as it grows extremely slowly). Other cancer cell types are also less invasive and have a 95% cure rate. These are also quite rare but you should be aware of them.
By the way, if cancer is at all suspected, you absolutely NEED to have this surgery done by a gynecological oncologist. These gynecologists are specially trained in this field and should, God forbid, cancer be present, they can take the proper precautions during the surgery. For example, they know exactly how to perform such a procedure so that there is no spillage of the cyst (they use a bag before aspirating the cyst). Gyne oncologists do a special fellowship in this field and are much better trained at removing sinister growths so MAKE SURE that the person doing this surgery has the proper training. If cancer is not suspected then a regular gyne is just fine.
Sabriste, you have to understand that even very large cysts such as yours are quite common, even in younger women. The likelihood that it is something dangerous is extremely small. I am however wondering how on earth they diagnosed you with PCOS if you only have the one very large cyst ??? PCOS usually involves a chain (or necklace) of small cysts on the ovaries, irregular menses (periods), blood pressure and cholesterol problems, sometimes diabetes and yes, difficulty in loosing weight (but more likely the weight issue is related to that large cyst which carries some weight with it). If the only problem you have is the difficulty in loosing weight then this is not enough for a PCOS diagnosis. Perhaps you should ask about this as well.
I hope that everything goes well at your scans and at your laparotomy. If you wish, you can take a look at my post from around the 8th of May regarding my laparoscopy experience for the removal of my left ovary and tube (due to a 9 cm cyst). It is not quite the same type of procedure but the prep is basically the same. It may be helpful to you and perhaps offer you some encouragement.
Take good care of yourself and try not to worry. They will take this thing out and you will be back to normal in absolutely no time at all.
All the best.
Estria
Have they also ordered a blood test called the CA-125 ? This is a test that looks for a specific cancer antigen that is usually present in high numbers when ovarian cancer is present. 35 and under is normal. Unfortunately, premenopausal women have a greater chance of having either a false positive (where you score high and there is no cancer) or a false negative (where you score normal and there is stage 1 ovarian cancer) than post menopausal women. However, this can nevertheless be a source of additional information and I am rather surprised that your doctors have not requested this test.
Usually the ultrasound is the gold standard for ovarian cysts and the only reason I can think of to do the MRI would be to check out the rest of that area and be sure there is nothing that the ultrasound may have missed. I am not sure why they would call for both a CT scan AND an MRI so perhaps you should ask your doctor about this.
Was the ultrasound that you had an external ultrasound or an intravaginal one ? If it was external, you should get an internal one so that they can get a closer and clearer look at the cyst AND they can do a doppler flow analysis where they see if there is any blood flow to the cyst (cancerous lesions usually have what is called angiogenesis where they create bloodflow connections .. a lesion with no blood flow is less likely to be cancerous). The CA-125 and the doppler flow will definitely give them more information on this growth (oh and don't worry, I think they refer to almost anything as a mass .. it's a worrisome term for us patients but quite general as far as medical terms go .. it can still be a benign mass).
You are right in that someone of your age is very unlikely to have ovarian cancer. Most cases occur in women around the 60 age range. However, there are more benign forms of ovarian cancer that may affect younger women. For example, a borderline cancer is usually removed and the situation is completely cured (no chemo necessary as it grows extremely slowly). Other cancer cell types are also less invasive and have a 95% cure rate. These are also quite rare but you should be aware of them.
By the way, if cancer is at all suspected, you absolutely NEED to have this surgery done by a gynecological oncologist. These gynecologists are specially trained in this field and should, God forbid, cancer be present, they can take the proper precautions during the surgery. For example, they know exactly how to perform such a procedure so that there is no spillage of the cyst (they use a bag before aspirating the cyst). Gyne oncologists do a special fellowship in this field and are much better trained at removing sinister growths so MAKE SURE that the person doing this surgery has the proper training. If cancer is not suspected then a regular gyne is just fine.
Sabriste, you have to understand that even very large cysts such as yours are quite common, even in younger women. The likelihood that it is something dangerous is extremely small. I am however wondering how on earth they diagnosed you with PCOS if you only have the one very large cyst ??? PCOS usually involves a chain (or necklace) of small cysts on the ovaries, irregular menses (periods), blood pressure and cholesterol problems, sometimes diabetes and yes, difficulty in loosing weight (but more likely the weight issue is related to that large cyst which carries some weight with it). If the only problem you have is the difficulty in loosing weight then this is not enough for a PCOS diagnosis. Perhaps you should ask about this as well.
I hope that everything goes well at your scans and at your laparotomy. If you wish, you can take a look at my post from around the 8th of May regarding my laparoscopy experience for the removal of my left ovary and tube (due to a 9 cm cyst). It is not quite the same type of procedure but the prep is basically the same. It may be helpful to you and perhaps offer you some encouragement.
Take good care of yourself and try not to worry. They will take this thing out and you will be back to normal in absolutely no time at all.
All the best.
Estria
Sabriste
07-16-2009, 11:17 PM
Estria,
Thank you so much for your reply! It was so informative and helpful...I really appreciate you taking the time to write that! :) Sorry too for not replying sooner...I've not been feeling well this last week or so and haven't been on the computer much at all.
They actually diagnosed me with PCOS before they found the cyst. I had some blood tests done and they found out that my LH and FSH levels were out of whack...one of them was twice as high as the other which apparently was a flag for PCOS. That's when they ordered the ultrasound that found the cyst. She didn't say if there were cysts or not on my right ovary, just that it wasn't concerning...she was focused more on the other side.
I think my GYN ordered the blood test you mentioned, because when I went to see her yesterday she said they had no reason to think it was cancerous. I didn't know about the false negatives...I wonder if I should ask her about that? But it turns out that I also have endometriosis....and apparently the cyst is an endometrioma. I think that may have been the reason to do an MRI, so they could see if there are adhesions....? I'm not sure. I will hopefully have those results tomorrow.
I was wondering if this changes things as far as what I can expect from surgery? I've seen so many different things...some places say that endometriomas can be drained and removed laproscopically, but others say that cysts this large need to be taken out whole by laparotomy. My GYN didn't say anything about changing the plan to do a laparotomy.
Another problem I just found out I have is that my pituitary gland apparently releases too much prolactin. My (regular) doctor thinks that maybe this is what caused the whole ovarian problem in the first place (as well as other problems I've been having, like migraines and other things). So now I have to go in for another MRI to make sure the gland is normal sized. *sigh* God knows what will happen if it's not! But I'll cross that bridge when I come to it.
Thanks again for your support and all your help!
Sabriste
Thank you so much for your reply! It was so informative and helpful...I really appreciate you taking the time to write that! :) Sorry too for not replying sooner...I've not been feeling well this last week or so and haven't been on the computer much at all.
They actually diagnosed me with PCOS before they found the cyst. I had some blood tests done and they found out that my LH and FSH levels were out of whack...one of them was twice as high as the other which apparently was a flag for PCOS. That's when they ordered the ultrasound that found the cyst. She didn't say if there were cysts or not on my right ovary, just that it wasn't concerning...she was focused more on the other side.
I think my GYN ordered the blood test you mentioned, because when I went to see her yesterday she said they had no reason to think it was cancerous. I didn't know about the false negatives...I wonder if I should ask her about that? But it turns out that I also have endometriosis....and apparently the cyst is an endometrioma. I think that may have been the reason to do an MRI, so they could see if there are adhesions....? I'm not sure. I will hopefully have those results tomorrow.
I was wondering if this changes things as far as what I can expect from surgery? I've seen so many different things...some places say that endometriomas can be drained and removed laproscopically, but others say that cysts this large need to be taken out whole by laparotomy. My GYN didn't say anything about changing the plan to do a laparotomy.
Another problem I just found out I have is that my pituitary gland apparently releases too much prolactin. My (regular) doctor thinks that maybe this is what caused the whole ovarian problem in the first place (as well as other problems I've been having, like migraines and other things). So now I have to go in for another MRI to make sure the gland is normal sized. *sigh* God knows what will happen if it's not! But I'll cross that bridge when I come to it.
Thanks again for your support and all your help!
Sabriste
estria
07-17-2009, 12:14 AM
Hi Sabriste,
What a coincidence, I was just taking a glance and there was your message.
I would not worry about the endometrioma. If this is what they think it is then this is harmless and they probably want to make sure there aren't any others in your abdomen that need to be addressed by the surgery as well. I doubt that a mass of that size can be taken out laparoscopically and a laparotomy would be a much safer surgery for you under the circumstances.
As for the pituitary gland, this is perhaps what is causing the imbalance of Luteinizing Hormone and Follicle Stimulating Hormone that you mentioned. If they find that your pituitary gland is not producing the correct amounts of different hormones, you can take medication to regulate this, depending upon what is out of balance.
I am sure that you will be just fine. It is better to fix this when you are young then to go through life having problems and not knowing why. It is also good to regulate this problem early if you wish to have children in the future.
Do let us know how everything goes and all the best for the surgery. I am sure that your recovery will be swift. All the best.
Estria
What a coincidence, I was just taking a glance and there was your message.
I would not worry about the endometrioma. If this is what they think it is then this is harmless and they probably want to make sure there aren't any others in your abdomen that need to be addressed by the surgery as well. I doubt that a mass of that size can be taken out laparoscopically and a laparotomy would be a much safer surgery for you under the circumstances.
As for the pituitary gland, this is perhaps what is causing the imbalance of Luteinizing Hormone and Follicle Stimulating Hormone that you mentioned. If they find that your pituitary gland is not producing the correct amounts of different hormones, you can take medication to regulate this, depending upon what is out of balance.
I am sure that you will be just fine. It is better to fix this when you are young then to go through life having problems and not knowing why. It is also good to regulate this problem early if you wish to have children in the future.
Do let us know how everything goes and all the best for the surgery. I am sure that your recovery will be swift. All the best.
Estria
Sabriste
07-26-2009, 03:24 PM
Thanks again for the reply and the support, Estria! I am scheduled to have surgery on August 11, so hopefully it will all go well. I'm certainly ready to get it done...I never really had much pain that I paid any attention to (I just ignored it or thought it was normal, I guess?), but it's been getting progressively worse and now I get really bad pains that make it hard to walk upright. My Dr. prescribed me Darvocet for the pain, but unfortunately I can only take it when I don't have to drive anywhere, so that means I have to pretty much just deal with it during the day and wait until I get home from work in the afternoon to get some relief. Oh well.
I was wondering if anyone who's had a cyst like this has experienced real abdominal fatigue after doing any kind of physical activity? Just this last week or so, if I do anything like clean, do dishes, vacuum, anything of that sort, even for just ten minutes or so, when I stop my abdominal region feels like I've just done an intense abs-toning routine. Literally. I mean, my abdomen is *exhausted* and feels tight and very achy, and I feel just generally worn out. I feel so useless because I can't do a lot of chores, and I'm trying to help out my mother who just broke her wrist and can't do a lot of chores for herself. Yeah, this has been one crazy summer.
Anyway, thanks again! :)
Sabriste
I was wondering if anyone who's had a cyst like this has experienced real abdominal fatigue after doing any kind of physical activity? Just this last week or so, if I do anything like clean, do dishes, vacuum, anything of that sort, even for just ten minutes or so, when I stop my abdominal region feels like I've just done an intense abs-toning routine. Literally. I mean, my abdomen is *exhausted* and feels tight and very achy, and I feel just generally worn out. I feel so useless because I can't do a lot of chores, and I'm trying to help out my mother who just broke her wrist and can't do a lot of chores for herself. Yeah, this has been one crazy summer.
Anyway, thanks again! :)
Sabriste
estria
07-27-2009, 10:02 AM
Hello Sabriste,
Hang in there and that annoying thing will be history very soon. Your fatigue may also be due to your pituitary imbalance so you will need to have this checked out at some point so that they can regulate this problem.
Try to take it easy as much as possible prior to the surgery. A 14 cm cyst is quite large and yes this may be putting some pressure on your back perhaps. For the discomfort, you may want to try an anti-inflammatory such as Advil or Motrin. A heating pad also does wonders (if your job does not involve too much running around). Watch out for those pain killers as they can constipate (after surgery, be sure to take some metamucil, which is psillium fibre, or a stool softener and eat plenty of fibre ... spinach and other green veggies, prunes etc.. ... also, it is extremely important to drink plenty of water with this).
When I had my cyst, I would experience spasm like pains from time to time. I no longer have these since the surgery so I can only assume that they were caused when the cyst grew a little and stretched the ovarian tissue. My cyst was only about 9 cms so I did not have the fatigue episodes that you describe. Listen to your body and if you are tired, rest. See if you can get someone else to help out besides your mom.
All the best for the surgery next month. I am sure you will come through will flying colours and I am VERY sure that you will be extremely happy to be rid of that cyst (as I was).
Take care of yourself.
Estria
Hang in there and that annoying thing will be history very soon. Your fatigue may also be due to your pituitary imbalance so you will need to have this checked out at some point so that they can regulate this problem.
Try to take it easy as much as possible prior to the surgery. A 14 cm cyst is quite large and yes this may be putting some pressure on your back perhaps. For the discomfort, you may want to try an anti-inflammatory such as Advil or Motrin. A heating pad also does wonders (if your job does not involve too much running around). Watch out for those pain killers as they can constipate (after surgery, be sure to take some metamucil, which is psillium fibre, or a stool softener and eat plenty of fibre ... spinach and other green veggies, prunes etc.. ... also, it is extremely important to drink plenty of water with this).
When I had my cyst, I would experience spasm like pains from time to time. I no longer have these since the surgery so I can only assume that they were caused when the cyst grew a little and stretched the ovarian tissue. My cyst was only about 9 cms so I did not have the fatigue episodes that you describe. Listen to your body and if you are tired, rest. See if you can get someone else to help out besides your mom.
All the best for the surgery next month. I am sure you will come through will flying colours and I am VERY sure that you will be extremely happy to be rid of that cyst (as I was).
Take care of yourself.
Estria