Comments on: My Mind the Enemy – A Family History of Cancer

By: Daniela

Daniela — Sat, 21 Apr 2012 12:53:53 +0000

I’m not sure where you are getting your irafnmotion, but if you do test positive for the gene it is illegal for any insurance company to use this as a preexisting condition, to deny coverage or to base the cost of coverage under HIPAA. They also do not have the right to decide if you have a bilateral mastectomy or not. That decision is up to the patient period.The doctors I work with recommend the person already diagnosed with Breast cancer get the test first, because if they do not have the gene there is no reason for anyone else to be tested. If you are still concerned and you are paying for the test yourself I suggest you have it done under an alias so there is no way the results can be tracked back to you. This is common practice when working with famous and/or celebrity patients and your doctor should have no problem with it. If you do choose this route however, be very careful about keeping you paperwork as you may have a difficult time should you need copies later.EDIT: Okay, well I have received mine from a physician who spoke at a cancer meeting at UCLA. So after seeing your response I did a little searching and found it is not as clear cut as I thought, partially because it has also not been tested in the courts. There is also another point not brought up here regarding employers. I posted a link to one of the most current documents on found on the Department of Health and Human Services website so that you can read it over. Apparently this problem has been discussed for 8-10 years now and I read doing this search that Bush was supposed to sign a bill regarding this, but it did not list the bill number and did not read confirmation that it was signed. Hope this helps a little.I would go the alias route.

By: Charoenlak

Charoenlak — Sat, 21 Apr 2012 08:14:25 +0000

It’s not fair, but, currently there is not iislglateon that prevents this type of discrimination by an insurance company.I, myself, visited a Genetic Counselor to talk about the possibility of having the BRCA gene. We overlooked my family history and then the counselor advised that there is no protection against an insurance company dropping your coverage if they see the genetic testing in your file, and there is no protection against the Insurance company denying your claims should you get the disease.The best thing that you can do, if you know there is a high risk of Breast cancer (and even ovarian cancer, as there is a link between the two) for you, is to begin having mammograms as early as possible and having any unusual lumps checked out right away. Do a monthly self-exam. Talk to your doctor about the best time of the month to do the exam as the tissues change due to hormonal fluctuations. Breast tissue is on the dense side until about 35, but, that doesn’t mean that you shouldn’t have baseline scans done if you are younger than 35.One thing to consider, also, if you undergo the testing an are found to have the gene and elect to have the prophylactic mastectomy you can still get Breast cancer. The Susan G. Komen website has excellent information regarding genetic testing, prophylactic mastectomies and how to reduce your risk of Breast cancer.My choice was to opt to be more proactive with screenings rather than go through with genetic testing. Until iislglateon is put in place to protect those who have undergone testing from being discriminated against by insurance companies, I don’t see a real benefit to patients who opt for the testing. Good communication of your concerns with your physician should lead to early prevention and detection techniques.

By: jennincat

jennincat — Mon, 02 Apr 2012 16:53:02 +0000

Thank you Debs. Sharing this publicly was so helpful. It’s been good to hear people validate my concerns and to have people remind me to keep living it up! In my research regarding my own situation, I don’t think having one aunt increases your risk by much if at all regarding bc. Of course, you would probably want to check that out yourself but if I’m remember right it’s not an increased risk unless she was really young when she got it. Then maybe. Miss you lots!!!!!! xoxo

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By: Deb (SmoothieGirlEatsToo)

Deb (SmoothieGirlEatsToo) — Mon, 02 Apr 2012 03:03:21 +0000

Oh Jenn. I can totally understand how this would wear on you. I hope never to have to make the decision myself but I have a feeling that I might do what you are considering, just to stop the anxiety. With your family history, you do have reason to be concerned.

As for me, I’m just living it up. I have cancer history all over my family and I do everything I can to do my screenings, etc. But I don’t have any specific smoking guns like with breast cancer. Having said that, my aunt did have it. I need to find out how much of a risk this brings me. I go for my breast exams, but could be much better about self exams.

Hugs- I really hope that the right answer presents itself and it kills me that insurance can decline you when you really do have reason to be concerned. I’m with Missy- call them, write to them. The squeaky wheel…! Hugs.

By: Tamara

Tamara — Sat, 31 Mar 2012 14:13:01 +0000

I know it’s easier said than done. But focusing on the positive, choosing to frame your words and thoughts, meditating, exercising, all that good stuff works. Again, you know this! Hugs and much love to you!

By: jennincat

jennincat — Sat, 31 Mar 2012 04:12:45 +0000

“I might have odds stacked against me, but in the end, I’m pretty positive I can kick anything’s ass.” I love this. I think I could use a little more of you butt kicking attitude! I’m sorry to hear about your thyroid. It sounds like you learned a lot from that experience. Thanks for commenting and sharing your awesome attitude with me. It’s good to hear!

By: jennincat

jennincat — Sat, 31 Mar 2012 04:09:28 +0000

Thank you Tamara. You are always so encouraging and you are right about the worry. I’m hoping with time that the worry will go away. xoxoxo

By: jennincat

jennincat — Sat, 31 Mar 2012 04:08:17 +0000

Thank you for your encouragement and for reminding me I’m not alone. So glad you’re cancer scare turned out to be just a scare and that it sounds like you turned it around for good. (I went to a shrink for years and loved it.:-) I’m really sorry to hear about your family’s struggle with cancer but it sounds like you have an amazing attitude towards it. Love this statement, “Also, doing everything right does not guarantee what tomorrow brings.” My first thought was, “I know and I hate that” but then I thought about it and realized it holds an amazing potential for freedom. Thank you.

By: Shannon

Shannon — Fri, 30 Mar 2012 20:24:07 +0000

My mother and grandmother both had breast cancer. I so far have opted not to have the genetic testing. What would I do differently if it was positive or if it is a false negative? I don’t think I would opt for a preventative surgery since I’ve been through a cancer scare (thyroid) and it came back negative. Right now I try to keep very healthy and fit and I’m determined I can beat it the big C comes my way by being ready to take it on with a healthy strong body (my mom had cancer 3x before she passed). I DO however opt for early screening and have gotten my dr to approve ultrasounds and such and can submit them to insurance.

In other words: it doesn’t keep me up at night because I’m doing what I can to catch things early. Every healthy choice I make in life from food to exercise to sleep is something that is better for my body. I might have odds stacked against me, but in the end, I’m pretty positive I can kick anything’s ass. I panicked when I got an “inconclusive” test result for my thyroid and had it removed. Now I know the repercussions of hasty surgery. I don’t regret it, but it is something that really affects my life every day.

Just like Lily, out of my whole large family, only 1 hasn’t died of cancer, my grandfather. It is hard, but I wouldn’t like to live a life of fear because of it either.