Seriously?

[robinsmommy]

DH has just heard that he can’t get genetic testing for breast cancer mutations locally. They only serve current oncology patients. The news came that he was being removed from the wait list after he was on it for 2+ years.

He needs testing, as his uncle is a carrier and passed the gene to both his kids- two of uncle’s four grandkids are also-one is not, one is male and has not tested yet. One cousin in mid twenties is getting surgery soon after her chemo and radiation is done, the other in early twenties (less than an year older than our older girl) is getting a preventative mastectomy this fall.

We are arranging to drive 5 hours away to get testing done. We live in a city that is the regional medical hub for outlying areas.

Our girls need this info as they need to make informed decisions for their future. And we seriously can’t get testing here?!?!

I just don’t know what to think or say.

Tough titty?!?!

[California]

That sounds ridiculous. Five hours is not an easy drive, and to know that you are already in a regional medical hub and you have to leave it to get the test is super frustrating. Sorry you are having to deal with this! Stupid rule.

[Liziz]

AFTER he'd been on the wait list 2 years? I can understand a change in policy, but it's so upsetting that it happens after he's been waiting so long. I wish when changing their policy they would have grandfathered in those already on the list.

It's scary to me sometimes how thin our healthcare system is in certain areas. I think most people generally walk around assuming they can get whatever care they need whenever they need it, and that's not true in many places/for all things. I live in the second biggest city in my state, in a place that has a med school, and there's several types of care/specialties where people just can't get care without traveling several hours or waiting a year+ locally. It's the nature our our healthcare system right now but it's awful when you (or your loved one) is the person faced with it!

Wishing you guys a smooth process as you setup out-of-area testing. I hope it's not as long a wait this time!

[squimp]

I hope it goes smoothly. The process is flawed - my insurance initially said they wouldn't pay for it, and I ALREADY had breast cancer. I wanted to know for my sisters, their kids and my child. My oncologist kept pushing and eventually they ran the tests. I was happy to tell them all I didn't have any markers. It is worth it to know either way but geez what a pain!

[Snow mom]

I hope it goes smoothly. The process is flawed - my insurance initially said they wouldn't pay for it, and I ALREADY had breast cancer. I wanted to know for my sisters, their kids and my child. My oncologist kept pushing and eventually they ran the tests. I was happy to tell them all I didn't have any markers. It is worth it to know either way but geez what a pain!

It’s crazy to me how variable the policies are. My mom got tested in her mid 70s and I was shocked they were willing to do it. Both her mom and aunt had pre-menopausal breast cancer, and our family is small due to historical stuff. I figured by 70 they’d be unwilling to do a panel to determine whether she was a carrier of any of the known mutations.

[NCGrandma]

I find this very discouraging — by now I would have hoped that guidelines and practices for testing for breast cancer mutations would be well accepted enough that PPs' experiences would be a thing of the past.

Many years ago, one of my physician colleagues was the first person I knew who was tested. Both she and her husband met the "ancestry" criteria for testing, but even then, it was quite a production to get the tests ordered AND to make sure the results were handled in a way that would not jeopardize their future insurability. (That was a big concern then.). She also wanted to get her young daughter tested, and somehow arranged to have the testing done "off the books" using assumed names.

Guess things really haven’t come as far as I hoped…


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[o_mom]

Just following up on this to share that here it can be done via a virtual appointment and then they send the collection kit in the mail. You never even need to step foot in a doctor's office. I'm baffled as to why he would need to drive 5 hours.

[robinsmommy]

I have my own update. DH finally managed to get tested awhile back, and is not a carrier. Whew! Hearing about the complications post surgery for the cousin who had a preemptive mastectomy adds to my relief, and sadness that other family are still living with it.

Telling his doctor that we needed a referral to drive 5 hours for testing pushed him to actually do something. The solution was for DH to briefly see someone at the local cancer clinic (not a geneticist) and then get the blood draw. The doctor probably pulled inside strings to get it done. And we had to wait weeks for results.

I still can’t get over the insanity of how this got handled. His family overseas was horrified, the testing would have been done years ago when he first asked.

My suspicion is that our practice is STRONGLY encouraged (strong armed?) to only provide referrals to providers inside their employer’s large hospital/network of medical providers. Which of course would mean care is not always optimal- but would make them more money. I wonder if they would answer if I asked about that directly at my next visit. Probably couldn’t. I suspect this is far more common than is realized. They have always tried to steer that way, but it has gotten worse lately.

But at least that health issue is dealt with.

[gymnbomb]

I am so glad to hear he was able to get the testing done and that the results were good news. I'm sure that is such a relief for your family!