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Anyone get genetic testing

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

Just wondering if anyone got tested? I am 56 and never thought about needing it till my 32 year old daughter had colonoscopy and had 2 medium pre cancerous serrated adenoma sessile polyps.  lynch syndrome is genetic syndrome that is hereditary for colon cancer and other cancers.. kidney cancer is one of the familiar hereditary cancers included in lynch syndrome along with uterine and few others.  if I understand there's a 50% chance of passing it to a child.

Just curious if anyone was tested and can give feedback.  She's getting tested and I am asking to get tested at my next followup.

Kim

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

But, am very curious Kim as to what you & your daughter will find out.

Please keep us posted.  I'll keep you and yours in my prayers,

Donna~

P.S. cute pup

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

This is good information. Thank you. Is it clear cell kidney cancer or another type? Please know we are keeping your daughter in our thoughts. I am glad it is pre-cancerous. 

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

I have only seen kidney cancer in general not specific to clear cell, which is what I had.  I just know from research we have been doing that lynch syndrome if diagnosed is connected to colon and a few other cancers. 

I will get back with more info as soon as we know.

Kim

medic1971's picture
medic1971
Posts: 199
Joined: Sep 2015

In Jan I'm going back to MD Anderson for genetic testing.  I'll post anything I find out.  I had two chromophobe spots on my right kidney.  They were small, but still... I want to make sure there is nothing I could have passed on to my  little girl.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Unless you have very specific syndromes, you shouldn't need genetic testing. I had twe oncologitsts and a geneticist tell me chromophobe is sporadic. 

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

In Canada, we do have a Canadian Consensus Guideline on genetic screening for kidney cancers. Please see the link below, Table 2 in the document specifically lists WHO should have the genetic screening done. (Generally this means if diagnosed < age 46 and/or non-clear cell rcc and/or bilateral tumours – both kidneys and/or unusual pathology, and/or other renal tumours in the family.)

Canadian Guideline on Genetic Screening for Kidney Cancers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3854468/

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Specific syndromes. NOT JUST NON-CLEAR CELL. 

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

For the list of defined hereditary RCC syndromes, please.refer to Table 1 in the document 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

My question: Does insurance cover the cost of the genetic testing?  If not, what is the cost of the testing that I can expect to pay?  I'm with Medic1971 on this one.  My greatest fear is that I've passed the disposition of this terrible disease on to my children.  If there is a way to determine this then we can develop a plan with our gp.

Stub

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I went to Cedars Sinai for genetic testing. They worked with me on getting it paid for or done cheaply At first they were going to do a very limited series of tests. My insurance company declined to pay for it at first because the said it wasn't "treatment". In that case, the genetic counselor was going to choose a cheaper lab since I'd pay out of pocket. It was going to cost around $3-400.

However, when I went in for my counseling and he did my history, because my mother and grandmother have both had breast cancer, my mother had uterine cancer, and my grandmother had lung cancer, he was able to justify full testing and also get the insurance to pay for it. So I had a pretty complete series of tests.

They didn't really find anything conclusive. From the genes they know, my cancer doesn't look to be hereditary.

I did it mainly for my sons. Half my medical history is unknown because I'm adopted on my dad's side and out of touch with that family, so I wanted to look into it for my children.

If I'd done the limited testing going to the cheaper lab, it would've been $300-400. If he'd gone with his regular lab, it would have cost double that. I don't know what the full testing would have cost since my insurance covered it all.

At the seminars I've attended, they've repeatedly said that 90% of these cancers or more are not inherited, but due to mutations in genes as we age and not passed on to our children. If you know your family's history on both sides pretty well, it's probably not necessary to get tested. I did it for peace of mind.

If you're interested, I'd find a cancer center or cancer research facility and ask to speak to a genetic counselor. At least that's what my interface at Cedars Sinai was called.

Regards,

Todd

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

I Don't  want to have passed anything to my children either..  Let us know medic and I will also post anything I find out too. 

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

I had genetic testing done since I was diagnosed at 37. I was tested for 19 (if i remember well)  genes to see if there was something wrong. I too wanted to know if my child's were at risk. Everything was fine. As for the cost, I can't tell as it was covered by insurance. 

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Now you've got me scared about our little girl, since my husband was diagnosed at 36... I'll think about it...

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Unless you have genetic kidney cancer, it's not likely you've passed it on. Something between 0-10% of these cancers are genetic. If you had it, you probably would have had relatives that had kidney cancer (or other cancers) as well.

Todd

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Thanks, Todd, that put my mind at ease a bit!

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

I had genetic testing in 2013  I  had Renal Cell ca in dJune 2012 and very next year had colon cancer and the cell and cancers were not related to each other, so that is why the genetitist recommended testing.  I  am high risk for 7 more cancers, and they recommended that my sons and my siblings have colon screens and kindney scans done.  I still have the adenomas in the colon on every colonoscopy each year. SO i am on frequent surveillance screenings every 6 months.

pepper43's picture
pepper43
Posts: 16
Joined: Dec 2016

I received BreastNext testing early on in my treatment days. Thankfully, all were negative. I am thinking of asking my MO to test for Birt–Hogg–Dubé syndrome= as this particular syndrome is associated with rare form of RCC I have (Chromosobe).

Vivaldi
Posts: 27
Joined: Jun 2013

i got referred to the genetics program as the fourth person in my family with a kidney tumour. Mine actually was an oncocytoma, the other three were not. I was tested and have no hereditary cancer syndromes that are known. That said, they indicated there are other genetic factors they do not yet test for that can result in multiple family kidney neoplasms. So no answers really.  Mine was covered, the whole program screens for other cancer risks as well and gave me a list of screening I need for the future. 

pikkinickens's picture
pikkinickens
Posts: 1
Joined: Feb 2017

I'm new to all of this... I went to the ER on the 19th of January, had a radical left nephrectomy on the 30th and was diagnosed with stage 2, grade 3 renal cell carcinoma at the age of 37.  I just had the blood draw done for the genetic testing this past Friday (yesterday) and am anxiously awaiting the results.  

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Sorry to meet you here. You're a bit young for all this, but at least your lump sounds like a bit of a tiddler ( I know it wont feel that way). Mine was 10cm and others on here have had much larger. Not that we like to boast!

Anyway good luck with your results

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

And tell your story there. Its easy to so and more people will see you and answer your questions. They're a good bunch.

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