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Terrified..left Ovary needs to be removed due to elevated levels of CA125 and CA19-9
Not sure if I'm looking for advice or just a listening ear. So here's my summary: 39 years of age, no children, already had one full myomectomy (2013). Would like to preserve fertility, as I'm hoping sometime in the next year or so I will have a child. I know time is getting away. It's now 2016 and I'm symptomatic again, I thought the fibroids were back which they are, but found out I may have endometriosis as well. I have several ovarian cysts, including one that ruptured. I also have an enlarged uterus - about 16 weeks. I went in to see a very good doctor who did an ultrasound and then sent me in for a CT scan. She also ordered CA125 and CA19-9 blood tests which I thought nothing about but was told today that both levels are high and can't be ignored. Due to this, she wants to remove the left ovary which is the one that has all of the cysts, etc. She says it needs to be done right away.
My first question: is this normal procedure? I am reading that issues such as fibroids, cysts and endometriosis can elevate CA125 and CA19-9 and it does not necessarily mean you have or are at risk for cancer - kind of like a false positive. I'd rather be safe than sorry though and have the ovary removed. But I'd just like to know if this is what docs do with cases such as mine.
2. should I be at all worried. I'm terrified this might mean cancer. On the other hand they may remove the ovary and my levels are still elevated. I just don't know what this all means.
Has anyone been in this situation? Also, how was the surgery and recovery? Mine will be laparoscopic.
Thanks in advance. I've been crying. Disappointed I let myself get to this age without kids and terrified of what these CA levels mean on a much larger scale.
My first question: is this normal procedure? I am reading that issues such as fibroids, cysts and endometriosis can elevate CA125 and CA19-9 and it does not necessarily mean you have or are at risk for cancer - kind of like a false positive. I'd rather be safe than sorry though and have the ovary removed. But I'd just like to know if this is what docs do with cases such as mine.
2. should I be at all worried. I'm terrified this might mean cancer. On the other hand they may remove the ovary and my levels are still elevated. I just don't know what this all means.
Has anyone been in this situation? Also, how was the surgery and recovery? Mine will be laparoscopic.
Thanks in advance. I've been crying. Disappointed I let myself get to this age without kids and terrified of what these CA levels mean on a much larger scale.
COMMUNITY LEADER
Hi there. I'm really sorry that you are going through this situation and I am sure it is making you very anxious. CA 125 is a marker test, as you are aware. However, having an elevated CA 125 does not have to mean cancer but could also be indicative of a biological state that is abnormal. But it is also a marker that should not be ignored, that I agree with your doctor about.
I think that if you are concerned, and I can understand why you are, I'd seek a second opinion as quickly as possible. I'd also call your doctor and ask them to explain what things 'besides' cancers could cause those marker tests to be elevated and how it relates to the things they know about you. Ask about the surgery to remove an ovary and also if there is anything else in terms of options.
Then see another doctor for their opinion and to ask the same questions.
Honestly, that's what I'd do. I understand about the issue of wanting to preserve fertility, but a diseased ovary or an ovary with things such as lots of cysts would prevent pregnancy in and of itself. Not an expert in that but that is my thinking. At 39, you may need to seek the help of a fertility specialist as well regardless. Women are having children later and later it seems but once we turn 40, especially if we have never had a child, our body doesn't cooperate as much. Which I'm sorry about. But modern medical practice makes pregnancy a possibility for more and more women and at later and later years.
Let me know what you decide to do and keep in touch, okay?
I think that if you are concerned, and I can understand why you are, I'd seek a second opinion as quickly as possible. I'd also call your doctor and ask them to explain what things 'besides' cancers could cause those marker tests to be elevated and how it relates to the things they know about you. Ask about the surgery to remove an ovary and also if there is anything else in terms of options.
Then see another doctor for their opinion and to ask the same questions.
Honestly, that's what I'd do. I understand about the issue of wanting to preserve fertility, but a diseased ovary or an ovary with things such as lots of cysts would prevent pregnancy in and of itself. Not an expert in that but that is my thinking. At 39, you may need to seek the help of a fertility specialist as well regardless. Women are having children later and later it seems but once we turn 40, especially if we have never had a child, our body doesn't cooperate as much. Which I'm sorry about. But modern medical practice makes pregnancy a possibility for more and more women and at later and later years.
Let me know what you decide to do and keep in touch, okay?
1 Comments
Hi, sorry for the late reply. I finally got my FINAL results about two weeks ago. I went to a gyn oncologist...they did further testing including an MRI. Multiple cysts of course and endometrioma. I do not have cancer and do not need to have my ovary removed!!! Thanks for the support.
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