Scout

A loved one has been referred for genetic testing because they've now had four different types of cancer in an eight year period. They're a non-smoker and none of these cancers run in the family.

They've asked for my advice on whether to get tested. Yes, we can read the American Cancer Society page on the subject, but I'd like to hear from people who have chosen genetic testing or decided against it.

My first thought was whether the results could jeopardize future health coverage. But also knowing the genetic predisposition could help family members. It's complicated!

#GeneticTesting
#Cancer

https://www.cancer.org/cancer/risk-prevention/genetics/genetic-testing-for-cancer-risk/should-i-get-genetic-testing-for-cancer-risk.html

What Should I Know Before Getting Genetic Testing?

Genetic testing can help you about your health. Find out how much it costs, if insurance covers it, & other things to consider before deciding to get tested.

Feb 6 at 1:51amWeb
Show threadSpiritual Annie ☮️Feb 6

@ScruffyJunco

My Mama had an aggressive form of breast cancer that ended up everywhere and killed her. Her sister (my auntie) and my sister both developed it but caught it earlier and survived.

I was told the rest of us (including my brothers) probably have the gene. Because we are many, there was some interest from researchers.

I decided against. If I have the gene, that doesn't necessarily mean I'll develop breast cancer. Not all do. I just assume I do.

Show threadScoutFeb 6

@SpiritualAnnie

Thanks for sharing. I'm very sorry about your mother. Don't we wish we could spare our loved ones from the suffering? I hope you're taking care of yourself and getting screened as needed.💞

Show threadSpiritual Annie ☮️Feb 6

@ScruffyJunco

Absolutely. I get two types of tests annually and do a manual check monthly.

Mama passed almost 50 years ago, before some of the newer developments that are saving women's lives today. At the time, it was the most aggressive. We've moved on and there are worse.

At 66, I feel like much of my life has played out so I don't have as much time left to lose and it's allowed me to relax about it a bit.

Show threadlaura lemayFeb 6

@ScruffyJunco I had breast cancer and was referred for genetic testing before surgery, specifically to rule out BRCA (the breast cancer gene).

I did not think I had BRCA -- no family history -- but I was a bit nervous that something else scary would turn up. The report came back with two unusual mutations that had nothing to do with cancer, and were just unusual. The genetic counselors were really good at answering all my questions and being very, very reassuring.

Show threadlaura lemayFeb 6

@ScruffyJunco As to the insurance question my understanding is that if something terrible turns up on the testing, it is then a preexisting condition -- and as egregiously horrible as our insurance system is they are still required to handle preexisting conditions.

So sorry about your loved one; I hope they can find some answers. Four cancers is a lot.

Show threadikuoFeb 6

@ScruffyJunco Very sorry for your loved one, hope they're getting the support they need. ❤

I got genetic testing when I had breast cancer at 42. I'm just a very data-oriented, risk-averse person & want all the info. Also figured results might help my kids navigate their medical needs some day.

Turns out I have a VUS (variant of unknown significance) which may or may not be cancer-related. Genetic testing of family members could help clarify but my 1 surviving aunt who had breast cancer...

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Show threadikuoFeb 6

@ScruffyJunco ...won't get tested. Her only response was something like, "I don't think I want to know." (Can't remember her exact words.) She was pretty dismissive but I didn't push back, figured it's her medical decision & she doesn't owe me an explanation.

In the end, I think it's a personal decision. Even if you do all the research & talk about potential benefits to other family members, I think ultimately there's a gut feeling whether you want it or not.

Good luck to your loved one!

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Show threadNatashaFeb 6
@ScruffyJunco Not sure the rules outside UK, but in the UK insurance companies can’t take genetic testing into account for cover, although they will look at family history. I had genetic counselling but the end was advised against as not high risk as everyone had been over 60 when developing cancer. I would say useful if under 40 or worried about risk to children or siblings or if high chance further cancers would be revealed by testing that could be monitored or prevented.
Show threadJennyFeb 7
@ScruffyJunco I chose to do genetic testing because of family history/risk. It helped me with peace of mind and planning for the future. Finding if I’m at higher risk for something doesn’t mean I’m guaranteed to get it, but helps me know if I need to be vigilant (and has helped me qualify insurance-wise for more frequent screening that otherwise wouldn’t be covered). It was the right decision for me, but I can also understand why people might not do it.
Show threadJennyFeb 7
@ScruffyJunco (Also, if rules change and genetic testing can be used to disqualify me from health insurance in the future, I already have other documented preexisting conditions that will disqualify me anyway, so… 🤷🏻‍♀️)