Can I trust my ob/gyn's advice?

[Patti1965]

Hello Forum, I just began searching the net for info and I found this page and I am hoping that you all will be kind enough to offer me some advice and guidance. My general doctor ordered blood tests for my husband and I last June. Mine came back with an elevated CA-125 level, I believe it was 52. He recommended that I take the test to my ob/gyn so I did and she ordered an ultrasound and transvaginal ultrasound and gave me another CA-125 test which came back at 45. (btw, I had my period during the 1st CA-125 and my period was just over during the 2nd one) When I came to her office for the results of my ultrasounds she asked me "did you know that you have fibroids?". It turns out that I have 2 uterine fibroids, each the size of a tennis ball, and now she wants to give me a hysterectomy. I scheduled it yesterday for Nov. 6. Here is what I am wondering...I have been seeing my ob/gyn for 20 years, I have gone faithfully every 6-12 months to see her for a pelvic exam and pap smear, she is the only ob/gyn that I have ever had, so my question is: why didn't SHE know that I had these tennis ball size fibroids??? She's giving me a hysterectomy in 10 days and I am really having 2nd thoughts now because I am finding that there are treatments for fibroids and I am really confused about my doctors response to my situation. I'm going to try to get an appointment with a gyn oncologist in my area and perhaps try to get a 2nd, 3rd, etc. opinion before I go in for the surgery. I have spoken to some family members and friends and I'm getting from them about 50-50 chance of keeping what's left of my libido and I'm worried about all the other side effects and complications of hysterectomy. Is it really necessary? Should I trust this doctor when I feel that she should have been the one to tell me about these fibroids years ago? Please help! Thank you all in advance. :)

[Nel14]

Patti,

I am in your same shoes.  I am 37 years old and have always had my yearly exam.  This year though I started feeling abdominal pressure during intimacy.  When I told my gyno,  she recommneded an ultrasound.  I was just told I have a 9cm fibroid at the top of my uterus.  I was told over the phone that a hysterectomy might be necessary.  I of course felt awful.  Like you, I also started doing some research. Luckily at this point I have not had any of the awful symptoms associated with fibroids so I am opting to keep my uterus and on the advice of my gyno, I am just going to keep tabs on the size of the fiboid.  I am however still concerned about the cancer possibility because I have not had the CA125 done.  I hope to get that done next month.  Hopefull the results will show that it is infact just a fibroid and not a cancer.    

Best of luck to you.

[Cherie762]

The issues Patti is facing acn infact be 2 seperate things. Unfortunatley for us women it seems our female systems sometimes goes a bit haywire after the age of 40. I wish not to cause fear but it would be possible to have noncancerous fibroids and cancer elsewhere for example the ovaries,

We shall not assume the worst however. Fibroids are almost always begnine. There are other ways to treat them besides a drastic hysterectomy. Leupron is an option it puts one into a chemically induced menopause that would hence cause the fibroids to shrink. There is a surgery called leep that removes just the fibroids, I dont know anatomically how either of your fibroids are it matters if they are 'ON" "IN" or "THREW" the uterus.
On and in can usually be removed surgically wo comprimising the uterus,,,threw is touchy,.

ultrasounds are a mid grade test at best.,..a cat scan or mri would give a 100% better picture as to what is going on.

Patti, you will likely need some biopsys to see where the suspicious tissue is comming from..could be cervix-uterus, endometrial or ovarian..and please dont panic could be something very easy to take care of, I would recommend you post your ca125 results on our ovarian cancer forum. they know alot more about those results than I, my specialty is hysterectomy and recovery.

best wishes to both.

[Nel14]

I did some more research on the CA 125 test and it seems that the normal level is less than 35.  Unfortunately benign fibroid tumors can  cause an elevation in the CA 125 level so therefore it is not really recommended  as a test for malignancy unless there is already a known cancer present.  

I will take Cherie's advice and talk to my doctor as to what other tests I can have done.  

[Nel14]

I did some more research on the CA 125 test and it seems that the normal level is less than 35.  Unfortunately benign fibroid tumors can  cause an elevation in the CA 125 level so therefore it is not really recommended  as a test for malignancy unless there is already a known cancer present.  

I will take your advice and talk to my doctor as to what other tests I can have done.  

[Cherie762]

Please stay in touch and let me know what drs say. Its an odd situation at best when one has an elevated ca125 for a non cancerous condition, Good luck in a way, there are many many things Id rather deal w than ovarian cancer. Its a very difficult disease to beat.Although improvements are continuing to happen. We have an entire forum on ovarian cancer if either of you are interested. Its hosted by some wonderful loving people.