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Gyn-onc recommends ovaries to come out... really??
I have complex cysts on both ovaries found by ultrasound. My CA125 level is normal (12) and I am negative for the BRCA 1 and 2 mutations. However, my mother had breast cancer in her late 40s and her mother had colon cancer in her 40s then died of ovarian cancer in her 70s.
My gyn wanted to go in and remove the cysts laporoscopically. I asked for a second opinion with a gyn-onc. The gyn-onc recommended not attempting to remove the cysts but, given the family history, remove both ovaries. He is concerned, even without the BRCA mutations, of my significant family history and thinks the best option is to remove the ovaries. He does not recommend removing the cysts. I didn't really get a clear answer why (I was in shock).. just that he was saying if we were going to go through with the risks of surgery, just take out the ovaries and remove the risk entirely. He said we could follow the cysts by ultrasound for awhile while I make up my mind.
I'm 38 and wondering if this is too extreme. Has anyone gone through surgical menopause in their 30's? How horrible is it?? :(
Thanks for any input.
My gyn wanted to go in and remove the cysts laporoscopically. I asked for a second opinion with a gyn-onc. The gyn-onc recommended not attempting to remove the cysts but, given the family history, remove both ovaries. He is concerned, even without the BRCA mutations, of my significant family history and thinks the best option is to remove the ovaries. He does not recommend removing the cysts. I didn't really get a clear answer why (I was in shock).. just that he was saying if we were going to go through with the risks of surgery, just take out the ovaries and remove the risk entirely. He said we could follow the cysts by ultrasound for awhile while I make up my mind.
I'm 38 and wondering if this is too extreme. Has anyone gone through surgical menopause in their 30's? How horrible is it?? :(
Thanks for any input.
One more thing. I had my ovaries removed because of ovarian cancer just before my 43rd birthday, so I was a little older than you. I had few of the typical menopausal symptoms, and felt good pretty quickly after surgery. I don't say that this is the norm, but the point is that everyone is different and you might not have such a bad experience if you do decide to go ahead with it.
That having been said, I still think you should gather more info before deciding.
That having been said, I still think you should gather more info before deciding.
I would get a second opinion, and perhaps a third opinion. I am not sure that the answer is so cut and dried. Of course, if you ARE at high risk for ovarian cancer, then taking out your ovaries is probably the right course of action. However, removing your ovaries at that age, especially if you do not take hormone replacement therapy, can have many negative effects on your health in the future. If you are interested, I can list them for you.
I would also urge you to go to www.facingourrisk.org, a web site for women with BRCA mutations. Even if you have tested negative, there are many women on the site grappling with similar issues, and I think you are likely to get a great deal of helpful information and support.
I would also urge you to go to www.facingourrisk.org, a web site for women with BRCA mutations. Even if you have tested negative, there are many women on the site grappling with similar issues, and I think you are likely to get a great deal of helpful information and support.
Hi again,
Well, I experienced vaginal dryness, insomnia, hot flashes, depression, greater fatigue and weight gain. The worst part was I didn't know what was happening to me. I thought my vagina had changed from the surgery but it turned out that dryness caused a multitude of issues for me. Just because they give you the all clear at six weeks doesn't mean you have healed. I learned that the hard way. I have been married for fourteen years and it was hard to find a "new normal" for my sexuality and my outlook on life in general. Honestly, I still have good days and bad days. It is hard to know how much is from the cancer dx versus just the surgery. But, I ended up taking a vaginal estriodol pill called Vagifem and it completely elimated the sexual pain issue for me. I tried antidepressants but they just seemed to contribute to my weight gain and lack of energy. I am not taking them now and I still feel blue many days but, probably no more than I did while I was taking the antidepressants. It is bearable. I had a terrible time with insomnia and hot flashes for about a year and a half. It is hard to go in every three months, wait for scan results and have your doctor want to "rule out recurrence." I am really not sure how much of my depression, insomnia, fatigue, etc was just related to the whole cancer experience versus just the surgery.
I decided not to take hormones for a couple of reasons. First, the breast cancer risk...it is high in my family and there seems to be speculation that the HRT could increase my risk. Second, my gyn/onc said he would let me take hormones only if quality of life necessitated it. My tumor was influenced by estrogen and I just didn't want to take the risk of taking estrogen and having it cause stray cells to grow more rapidly. When I had my surgery, my gyn/onc originally told me I could be staged 3c because of some areas that looked like the cancer had spread. I was an unusual case and I just felt like I wanted to avoid the hormones (just to be on the safe side). Two weeks ago, I asked my gyn/onc about it again due to concerns about bone loss, etc. He still said he would only recommend them if my quality of life needed them. I took that to mean..I've made it this far...stick with it..no hormones.
You will find a "new normal" after your surgery and your experience may be great. This is just what I went through. Honestly, if you know what to expect and find a solution quickly it will help. After my surgery, I was just wondering if some things would ever change back to normal. But, in the end, you will be able to have sex, be sexually responsive, get over the hot flashes and go on with your life. In my mind, the problems I have had in these areas are very small compared to ovarian cancer being left to grow and spread. None of us on this board would have chosen this path, but once you are dealt those card you have to make the best of it. I would never recommend removing the ovaries just for a "hysterectomy" but ovarian cancer and high risk for ovarian cancer (like you) are different.
Did your doctor say if he thinks your bilateral complex cysts are malignant? I hope they aren't and that you can get those masses out and be free of ovca. Feel free to ask any other questions you have because I know this is a hard time. It stinks to just be waiting. But, if I were you I would go with your gyn/oncs advice and have it all removed. Best wishes.
Shelly
Well, I experienced vaginal dryness, insomnia, hot flashes, depression, greater fatigue and weight gain. The worst part was I didn't know what was happening to me. I thought my vagina had changed from the surgery but it turned out that dryness caused a multitude of issues for me. Just because they give you the all clear at six weeks doesn't mean you have healed. I learned that the hard way. I have been married for fourteen years and it was hard to find a "new normal" for my sexuality and my outlook on life in general. Honestly, I still have good days and bad days. It is hard to know how much is from the cancer dx versus just the surgery. But, I ended up taking a vaginal estriodol pill called Vagifem and it completely elimated the sexual pain issue for me. I tried antidepressants but they just seemed to contribute to my weight gain and lack of energy. I am not taking them now and I still feel blue many days but, probably no more than I did while I was taking the antidepressants. It is bearable. I had a terrible time with insomnia and hot flashes for about a year and a half. It is hard to go in every three months, wait for scan results and have your doctor want to "rule out recurrence." I am really not sure how much of my depression, insomnia, fatigue, etc was just related to the whole cancer experience versus just the surgery.
I decided not to take hormones for a couple of reasons. First, the breast cancer risk...it is high in my family and there seems to be speculation that the HRT could increase my risk. Second, my gyn/onc said he would let me take hormones only if quality of life necessitated it. My tumor was influenced by estrogen and I just didn't want to take the risk of taking estrogen and having it cause stray cells to grow more rapidly. When I had my surgery, my gyn/onc originally told me I could be staged 3c because of some areas that looked like the cancer had spread. I was an unusual case and I just felt like I wanted to avoid the hormones (just to be on the safe side). Two weeks ago, I asked my gyn/onc about it again due to concerns about bone loss, etc. He still said he would only recommend them if my quality of life needed them. I took that to mean..I've made it this far...stick with it..no hormones.
You will find a "new normal" after your surgery and your experience may be great. This is just what I went through. Honestly, if you know what to expect and find a solution quickly it will help. After my surgery, I was just wondering if some things would ever change back to normal. But, in the end, you will be able to have sex, be sexually responsive, get over the hot flashes and go on with your life. In my mind, the problems I have had in these areas are very small compared to ovarian cancer being left to grow and spread. None of us on this board would have chosen this path, but once you are dealt those card you have to make the best of it. I would never recommend removing the ovaries just for a "hysterectomy" but ovarian cancer and high risk for ovarian cancer (like you) are different.
Did your doctor say if he thinks your bilateral complex cysts are malignant? I hope they aren't and that you can get those masses out and be free of ovca. Feel free to ask any other questions you have because I know this is a hard time. It stinks to just be waiting. But, if I were you I would go with your gyn/oncs advice and have it all removed. Best wishes.
Shelly
Thanks hopeshell :) How did you feel the first few years? You said they were tough? Why didn't you do HRT?
Hi Nerdymom,
Yes, I went through surgical menopause at 37 for ovarian cancer. I would go with the gyn/onc recommendation if I were you. Yes, the first couple years were tough in surgical menopause but I am have now found an "new normal." You also may choose to take HRT (I didn't) and that may alleviate any bad symptoms. It is a hard decision that only you can make but I would take them both out if I were you. Your risk factors and current complex cysts are why I say that. Just take it easy on yourself and know you will be going through a phase of change and I am sure you will soar through it with no problem. I would never recommend surgical menopause for no reason but that is not your case.
Also, you can have a normal CA125 and still have a malignancy. Did he say if he suspects your cysts are malignant? Anyway, I would follow his advice. Feel free to ask if you have any specific questions. I would be glad to share my experience with you. Best of luck and I hope all turns out benign.
Shelly
Yes, I went through surgical menopause at 37 for ovarian cancer. I would go with the gyn/onc recommendation if I were you. Yes, the first couple years were tough in surgical menopause but I am have now found an "new normal." You also may choose to take HRT (I didn't) and that may alleviate any bad symptoms. It is a hard decision that only you can make but I would take them both out if I were you. Your risk factors and current complex cysts are why I say that. Just take it easy on yourself and know you will be going through a phase of change and I am sure you will soar through it with no problem. I would never recommend surgical menopause for no reason but that is not your case.
Also, you can have a normal CA125 and still have a malignancy. Did he say if he suspects your cysts are malignant? Anyway, I would follow his advice. Feel free to ask if you have any specific questions. I would be glad to share my experience with you. Best of luck and I hope all turns out benign.
Shelly
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