Possible gene mutation, I need opinions and comfort please <3

[Airisto]

Hello, I am really hoping to get some feedback and advice on what I recently found out.


To start out, I am a very bad hypochondriac, I’ve had almost every test under the sun, never found anything wrong with me. I have no family history of cancer in my immediate family, and I’d like to think I live a decently healthy lifestyle.

A few years ago my mothers cousin passed away from Lymphoma. This prompted her to get genetic testing done, and it turns out she has a BRIP1 mutation, a year later she decided to get a full hysterectomy. She was 59 at the time and never ended up having cancer.

Well I just turned 24, and getting older brought up the fear that I might have this mutation. And I feel extremely trapped. I can’t do anything about it right now for a few reasons:

- I have no money to afford genetic testing
- I don’t have insurance
- My mother and her genetic counselor highly recommended it wait until I am around 30 to get tested, which makes sense for money reasons and I plan on doing that.

I just can’t shake the fear that something really bad will happen before then. My family rarely ever gets sick, the only family members I can think out who have developed cancer were some of my moms cousins or aunts, and they were all in their 50’s or 60’s (one of my moms aunts had BC at 40, but I was told she took a lot of hormones therapy so it was probably linked to that.)


I am trying to seek therapy for this worry, I’ve had therapy for cancer fears before but never this one, I think this one is defiantly a little more rational.

So I guess I’m asking if it is safe to do what I was advised and wait for testing at 30? Even if I have it, I won’t be recommended for anything until 45.... I’m just scared I’m cutting it close. I don’t know what else to do. I know its very bad to get hysterectomies until youre 40, I feel like I now have to live with the fear of cancer for years to come, and I hate it and I’m terrified.

[Scaredtoo]

I can tell you from My experience I feel your anxiety. My mama died of breast cancer at 64, but she was diagnosed with it at 45. It was a good 12 years (we thought she was cured) before it came back everywhere. I’ve also had cousins die from it. Early on I knew I would be insanely hyper vigilant because I’m a huge hypochondriac. When I turned 37 I decided to get genetic testing. My gene testing showed no BRCA genes. I elected to have a preventative bilateral mastectomy anyway. The way my specialist explained it you can test negative for the gene but still have a strong family history of it (which I did). I recently got a hysterectomy three months ago (left ovaries in because of heart disease risk). It’s been ten years since my mastectomy. I just had a huge panel of genetic testing done a year ago and again, prayerfully did not have a gene defect.

I guess my point is this. You don’t seem to have a huge family history (going by what you said here), I’m assuming neither parent had it. Gene testing is helpful but it isn’t a get out of jail card, meaning none of us can predict what tomorrow brings. I think it would be perfectly fine to wait. Try not to stress too much about it. I know that’s hard but when the time comes to get tested just tell yourself you’re trying to be in control of your health. Listen to the genetic counselor. They know their stuff. If she advised you to wait I would wait

[.Poppy.]

I would also wait. Keep in mind that a cousin is not a direct relative - it could be their parent that is unrelated to you by blood that carried the gene.