Considering Prophylactic Surgery

[johns wife]

I am 44 years old.  Several years ago, my only  paternal aunt was diagnosed with ovarian cancer at age 42.  She is a survivor.  My only sister lost her short battle with ovarian cancer at age 49 almost two years ago.  After watching these events unfold, I began to take my ovarian health a little more seriously.  Last year, I had a CA125 and transvag ultrasound

[beachscottie]

Hi, Sorry, I am new and didn't read the red explaination (DUH!!)
Reposted it in the ?'s.  Thanks!!!

[beachscottie]

Hi, 52, way post-menopause, on hormones many years, no family history of any "female" cancers.  Have been having stomach problems for a few months.  Had all tests, gallbladder  ultrasounds, colonoscopy, endoscopy, small bowel follow through-no results except left kidney stone(pain more on right side).  Gastro sends me to Gyn for ovary ultrasound, can't even pick them up in the US-good thing! Waiting on ca-125 test.  
  Heres the thing- Gyn "suggests"-no matter what, because of "vague abdominal pains-etc" that I have, at least, a lap. to check the ovaries and he "advises" -since I am a women and that is my biggest risk factor, that I have the ovaries and uterus removed, even if no cancer is detected.
  Now, I am all in favor of preventive measures but this sounds a little extreme to me.  Other than these stomach problems, I am in good health.  My mom is 75 and her sister is 80 and they both still have all their "parts".  Opinions?  Thanks!!

[LSN914]

I have a family history of breast and ovarian cancer and four years ago was diagnosed with fallopian tube cancer.  A medical problem (not connected me with my diagnosis) led me to a wise gynecologist who advised that with my family history, I should consult with a gynecological oncologist to discuss my risk of thiese diseases.  I did so the next week and he was able to give me the percentage increase based on family history ( higher risk with first degree relatives)  in comparison with a woman with no family history.  Based on an increased risk I decided to have a prophylactic removal of my ovaries and fallopian tubes.  In the course of the surgery I was found to have fallopian tube cancer.  Subsequently I tested negative for the BRAC gene.  At the time of my surgery my CA 125 and ultrasound were normal.  My cancer was all microscopic.  

Because of my family history I have been cognizant for many years of this cancer as a possibility.  I participated in a reasearch study testing the CA125 for several years.  My gynecologist (not the wise one) at that time never suggested prophylactic removal of my tubes and ovaries.  

Consult with a gynecological oncologist, and discuss your family history.  If you decide to have surgery, have it done by a gyn oncologist, in the event that there is cancer.  It has been statistically demoinstrated that in cases of ovarian ca (fallopian tube is included with this) that surgery by an gyn oncologist results in longer survival rates.  This is a complex surgery and requires a highly trained and skilled physician.

My sister because of my diagnosis  and our family history consulted with an gyn oncologist who advised her to have a complete hysterectomy as a prophylactic measure.  She did that.  I realize that this is a huge decision to make and it should be done thoughtfully and in consultation with a trusted doctor.  Good Luck!

[AnotherKatie]

Both good answers up above here...
Personally, I would say don't just go ahead and remove healthy organs, out of fear, unless you have had the BRCA1 gene testing confirming you are at risk.  My grandmother and cousin had ovca, and my dad prostate, yet my doctor said those things were not reasons to remove my ovaries.  Be aware of your risk potential, and ask to be closely monitored.
Some research I found did show a link between removal of the ovaries in pre menopausal women and decreased incidence of breast cancer (the estrogen link I would guess).
I would not do a prophylactic oophorectomy based solely on a CA 125 test.  It is far too unreliable.  You will find women here who had advanced ovca with very low numbers, and, women with high numbers who turned out to have other, benign conditions such as endo, as you mention.  Your own numbers could vary widely.  It is used more as a tool after an ovca diagnosis, to monitor progress.
If you read the stats, you will find ovca is very rare, and occurs most often in older women. Tybear, bless you, I know you are very young, so obviously it does happen in your age group.  But I still believe that you should not remove healthy organs because they might become cancerous.  I think there are risks to removing your ovaries that you need to look into.  The HRT just doesn't work as well as our ovaries do.  I do know how you feel though....and it is scary....be calm and research.... It is not just a "personal" decison, it is, as you say, imperative that you make the most medically sound decision.  Hang on to your ovaries if you can!!!
Best wishes

[Tybear]

I agree completley with you Katie. I think that in this case, the gene testing would be the first thing to do. Based on the results, you and your Doctor would have to come to a decision as to what's best for you. I'm not advocating for you to go ahead and remove you ovaries for no reason - they were put there for a reason and serve a very useful purpose even past menopause. And Katies right - HRT is no comparison to what our ovaries do for us. Like I said, having been through it all it would just be "easy" for me to say do it, but you need to do much more research about the pro's and con's. I hope the gene testing gives you some clarity to what I'm sure must be a confusing topic.
Becky

[Tybear]

I'm so happy that the other woman replied to you! I knew there was gene testing, but didn't know much about it. Having been through a late stage diagnosis myself, of course it would be easy for me to say do it! But it is a very personal choice and there are many pro's and con's that go along with it. At 44, you aren't too far away from menopause, but you would need to think about HRT and I can tell you, there are no black and white answers with it - only many shades of grey! I'm 27yrs old and was diagnosed last September at 26 with stage 3c - I have to be on HRT for the next 20 yrs probably - not fun! Look into the gene testing, but again, having been through it, I would say to do it. Look up statistics on the internet - I know having more than one first relative who has had it increases your risk, but I don't remember the percentage. Good luck with your decision.
Becky

[mtngurl]

Hi - I'm new here.  I am age 54, at age 36 was diagnosed with breast cancer.  I have a huge family history - mother, sister, 3 aunts with BR Ca, cousin with OV Ca. After my sister's diagnosis 2 years ago her onc suggested she be gene tested and was positive for BRCA1 gene. This can cause OvCa and BrCa. I followed up and was positive as well. My gyn suggested I have prophylactic oopherectomy, which I scheduled for May '05.  My pre-surgery ultrasound revealed tumors on both ovaries, and an immediate hysterectomy was scheduled.  My CA125 was 162. Both ovaries were involved, one with quite a large tumor, but somehow I was still stage 1B.  I had 3 chemo treatments, and am doing well 16 months out.

You might talk to your aunt about being tested for the gene.  The person who has already been diagnosed with cancer is the first one tested.  It is quite expensive, but often insurance will cover it.   If the gene is found, the cost for any other persons is much less.  Of course there are some issues with having this on your permanent record.