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Genetic testing for ovarian cancer Genetic testing for ovarian cancer

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Unread 02-19-2003, 12:42 PM
Genetic testing for ovarian cancer

I posted last night about ovarian cancer and preventative hysterectomy. (My mother died with OC). Today I would like to know if anyone out there has had genetic testing in lieu of hysterectomy or mastectomy. (In lieu of IF it comes back that you were not carrying the gene for either). I know it is expensive, but might just save me a hysterectomy. I am just in a knot about this decision and have very poor health insurance which complicates the decision as well. Thanks so much.
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Unread 02-19-2003, 01:37 PM
Genetic testing for ovarian cancer

Hi Luz...

No, I did not have any genetic counceling but I did have a hysterectomy, for ovarian cancer, last April.
27 years ago, my mom had a mastectomy for breast cancer (she is still alive and kicking and doing very welll... no reoccurances, thank goodness). when I was diagnosed with ovarian cancer I was told that it is the sister cancer to breast cancer.
I never even thought about getting ovarian cancer, i did fear getting breast cancer. Things happen in mysterious ways.
But, all is well with both of us.

Unread 02-19-2003, 06:24 PM
Genetic testing for ovarian cancer

s Luvslife

There is a wonderful organization called FORCE. Facing Our Risk of Cancer Empowered. I think if you type that into a google search engine you will find their web site.
I have had the opportunity to hear the woman who started FORCE speak.
There are so many things to consider when thinking about genetic testing.
Are all of the females in your family ready to hear the possible results? Are all of the females able to handle the results. Do you currently have all the life insurance you will ever want?
The impact of the result reaches out much further than we imagine.
Many cancer centers will conduct a risk assessment for you and advise accordingly. That is what I did.
Best wishes to you.

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Unread 02-21-2003, 08:16 PM
Genetic testing for ovarian cancer

I just replied to your previous post and came across this message.

I did go through genetic testing. Most insurance companies do not cover this testing. To test for just the BRCA I and II genes, it comes to around $400 + or -. A complete genetic mapping can cost into the thousands. After about a year of discussions with my insurance company, they did end up covering the expense. As I mentioned on my other response, I did have breast cancer and my surgical decision was based on whether I was positive for the breast cancer gene (I would have done a prophelactic double).

Was your mother ever tested? If she had the gene...I think that it would be a great idea for you to be tested. It is possible that it wasn't passed on to you which would certainly help in your surgical decision.

Before any testing is done, you will need to meet with a genetic counselor who will help you explore the pros and cons of genetic testing. Like Karenann mentioned, there are also some great websites and articles on the internet.
Unread 02-22-2003, 05:46 AM
Genetic testing for ovarian cancer

Thanks to you both for your information. I have been round and round this week, but have made some progress. I am looking at a Clinical Trial which does genetic testing and preventive complete hysterectomy and follow up OR you can choose just to be in the group where they do color doppler ultrasound and CA125 at regular intervals etc. Looking into all the ramifications of who pays for what in this trial. I'm thankful that you are out there to help me with this decision and educate me. Thanks to all.
Unread 02-22-2003, 08:08 AM
Genetic testing for ovarian cancer

I sure don't have an answer but I have some thoughts--

The age of your mother (72 if I remember right from your other thread) will make it considerably less likely that the link is genetic. Only a fraction of cancers are connected to BRCA mutations or have a genetic pattern.

No one has had cancer on either side of my family for three generations back and yet I got it (rare stromal cancer).

I know this doesn't help with your decision, but if you find that genetic testing is unaffordable or the trial won't take you, it might not have been the answer to your question anyway. Risk assessment might be far more helpful.

Only a proportion of women with the BRCA mutations get cancer--so it may in some ways be more important to focus on boosting your immune system. Exercise, 9 brightly colored fruits and vegetables a day, green tea, plenty of water--They aren't the whole answer of course but they are choices easily within our power to help ourselves with.

I think my lifestyle and physical condition had more to do with my immune system not working than any genetic link.

I had surgery just in case--vaginal ultrasound detected a mystery mass but my CA125 was not elevated at all. Turned out that stromal cancers don't affect CA125 levels the same way. So I'm sympathetic with the "just in case" decision.

At 57, age itself is a risk factor. And you will tend not to have the horrible hormonal problems that younger women have (though you might have some). If you have a gyn/onc do the surgery, their vast experience tends to mean fewer complications from the surgery itself. About 10% of surgeries do have complications, some more lasting than others, so it's worth going with the best surgeon you can get. I have to say that it's been easier to put up with the after effects knowing I had to have the surgery.

I guess that's all my thoughts. Not very helpful I know.

It's a tough tough decision.
Unread 02-26-2003, 05:33 PM
Genetic testing for ovarian cancer

Hi There,

I didn't have the genetic testing but I just want to state what I've been told by the oncologist I saw.

First, I did have a hysterectomy last year and I feel great. I was only 33 when I had it and I'm now 34. The main reason for my hyst was preventative due to OC. I lost my mother, grand mother, and great grand mother all to OC. My mother was 44 and the others were 42-44 as well. So deep in my mind I kept thinking I only had 9-11 more yrs to live, I think not. The oncologist I saw for my consultation stated I could have the BRCA I & II but told me staight out that it would be waste of time in my case because the background is VERY strong. He also told me that the tests are not 100% accurate. He said there is soooo much to be learned about OC yet that I could have the tests, they can come back fine but that doesn't mean there isn't a gene out there yet that they don't know about.

I also was advised to have kids before hand if I wanted to, chose not to, and he also said that again because it's so strong in my family I would most likely pass it right on to the next. Males can also carry the gene. So my brother could have it and if he had a girl he can pass it to her. Same went for me. If I had kids, had a boy, odds are he will have the gene too.

I am no Dr but I hope this helps you.

Unread 02-26-2003, 06:33 PM
Thanks to all of you :angel:

Because of you all I have studied and researched and feel that I have a much better idea of what to discuss with my gynecological oncologist in tomorrow's appointment. I feel very confident about the doctor I have chosen and also confident in my ability to discuss things intelligently with him because you have pointed me in the right direction. I will be back on soon telling you what we decided, but I am strongly leaning toward just having the hysterectomy and having it soon so I can be done with it. THANKS!!!
PS The above "smile" is my first if it didn't work or doesn't make sense.....I will learn!
Unread 02-26-2003, 06:44 PM
Sorry about angel in previous post subject line

Since I am learning I am going to see if I type in the body of the post will it show up as the little angel. In previewing the post I see that it did. So now I know! See I have learned something else this week.....that the smiles don't work in the subject line. Thanks again to all you angels out there.
Unread 02-26-2003, 06:51 PM
Genetic testing for ovarian cancer

Good Luck at your appt tomorrow and please keep us posted!!!


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