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Anyone had genetic testing? Anyone had genetic testing?

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Unread 06-05-2003, 11:39 AM
Anyone had genetic testing?

Hi girls

I'm about to be scheduled for genetic counselling. Although I'm not a cancer patient, my mother is a double mastectomy survivor for pre-menopausal cancer, and her mother and aunt both died from bladder cancer.

I'm just curious - has anyone been tested for hereditary cancers, and if so, what should I expect? I've searched around a little, but I'm really still not sure what would happen, and what measures could or would be taken afterwards.

As always, any and all answers are greatly appreciated

Many s to you all,

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Unread 06-05-2003, 12:02 PM
Anyone had genetic testing?

I received genetic counseling for ovarian cancer, but my HMO decided they would not cover the cost of the testing. So I cannot help with the actual testing. However, the counseling was questions about my family history for cancers of all kinds. I answered questions about how family members died as well as any diseases they had.

I hope it all works out well for you. I chose to have a prophalactic hyst as I was having other problems as well and my CA 125 was jumping all over the place.

Best wishes to you!
Unread 06-05-2003, 12:19 PM
Anyone had genetic testing?

I had a genetic test for alpha1 antitrypsin protein deficiency, a liver/lung disease.

It was a simple blood test, from your arm.
The results took about a week.

I chose to private pay because once your insurance companies pays for something, they own that information. I was afraid if I had the gene, if I needed to switch insurance companies, I would be high risk, even if I wouldn't have the disease yet. (and just because you have the 'gene', you might not ever develop the disease.

I did this in March of 2001. And at that time, there was a lot of moral and ethical questions about genetic testing and insurance companies. At this point, I don't know what is going on, but you might want to check this out!

Best of luck!
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Unread 06-05-2003, 03:42 PM
Anyone had genetic testing?

Like Juan, I was offered the option of going in for genetic counseling. But since there is no cancer on either side of my family, it is highly unlikely that they would proceed with the testing after our "counseling" discussion. So I haven't gone. My sister, who would be the only one affected, has gone in for a full check-up and has been given an all-clear.
Unread 06-05-2003, 03:49 PM
Anyone had genetic testing?

It's one of my questions for my gyn/onc next week. Although in my case it will probably be of little use. My mother's case was so rare that it is unlikely that they could identify any genes responsible. There are only certain conditions and cancers that they can identify the genes for so far. They have identified some responsible for breast cancer I know and a few linked to Hereditary Non-Polyposis Colorectal Cancer, a subset of which (Lynch II Syndrome) includes breast, ovarian and endometrial cancers. Bladder cancer is included in Lynch II Syndrome too. This may well be what they test you for.

I can't remember who told me but someone told me that they might want to test my mother first, to identify the gene. Then I would be tested to find out if I carried it or not. It helps if they know which gene to look for. At least I think that's the case!

I understood that the test itself was a simple bloodtest.

Let me know how you get on.

Unread 06-06-2003, 07:44 AM
Anyone had genetic testing?

I had genetic testing done after I was diagnosed with DCIS. I knew and had contemplated getting tested for years since cancer is very prevelent in my family. I choose not to do it before because I fwelt it would not effect hhow I delt with my odds of getting cancer. After I was diagnosed I did it mainly for my daughters benefit. I was counseled for about an hour giving the counselor a very detailed family tree. Naming aunts, uncles, cousins and cousins kids. Ages and diseases. The more they know the more helpful it is. The test itself is a simple blood test. If you are an Askenazi Jew it is very easy for them to locate the marker. And because of that it is a relatively inexpensive test (for me $200-$300) if you are of other nationalities, it could be alot more expensive. Insurance concerns did not bother me. Because of the importance of health insurance, almost half the states and a recent federal law now bar large health insurers from using genetic testing to discriminate against individuals because they may develop a disease in the future. The argument is that health insurance is so important that it should be treated as a community resource, with individuals' risk shared across the pool of all who are covered. when I choose to have a prophalytic hysterectomy, my health insurance would have paid for it because of the BRAC 2 mutation. Because they found ovarian cancer when they opened me up, it was not questioned that the health insurance would pay. But the genetic testing probably saved my life as I had no symptons and would have found the cancer at a much later stage. By the way my sister also had genetic testing and she was fine! Good luck.
Unread 06-06-2003, 08:13 AM
Interesting subject

I was diagnosed with DCIS last November. Now have been thinking a little about genetic testing. I know virtually nothing about my relatives' (grandparents) health and reasons for death. I don't think there is much cancer in my family. (My father died years ago from lung cancer / smoking. [I've NEVER taken a drag.] A maternal great aunt had breast cancer [double mastectomy] in her 70s.) But would I want to know? Sometimes yes. Sometimes no.

Two main concerns are how / if results affect health insurance and what the results mean primarily to your sisters and daughters. That I don't have to worry about as I have neither.

So what do I do?

Mary D.
Unread 06-07-2003, 01:52 PM
Anyone had genetic testing?

s Tess

There is a wonderful organization called: FORCE. Facing our risk of cancer empowered. They have a great website as well. There are so many ramifications to consider with genetic testing. YOu might find alot of good info on the above site.
Best wishes to you.

Unread 06-07-2003, 05:06 PM
Anyone had genetic testing?

s to you all - thankyou so much for your support and your kindness.

I will keep you posted as to what happens - the insurance/cost isn't really an issue, as much as the whole confidentiality thing is. I've only lived in the US since 97, and I still haven't quite managed to figure out the whys and wherefores of the insurance system yet

Either way though, I'll find out in a week or two whether or not the test is going to go ahead.

Again, many many thanks, blessings and prayers to you all.


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