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Genetic tests are in...

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

And it's all negative.... Not that I wanted it to be postiive for anything (they tested for 64 things based on personal and family history). But I was hoping for some answers, especially since my younger sister also has a kidney lesion. The geneticist thinks it may be something they don't have a test for yet so she wants to stay in touch with me. (I had Papillary Type 2 under age 40). She's also having my Dermatologist look for a certain type of skin leiomyomas when I see him for my yearly check up and if he finds any they have some other testing they'd like to do. I have had pre-cancerous moles removed before and read somewhere that they have found rogue renal cells in moles before. Anyhow.. before I jump down the rabbit hole any further..... 

Would I test again- yep. (plus I met my deductibles for the year so I didn't pay anything!)

What have been your experiences if you've been tested? 

 

angec's picture
angec
Posts: 923
Joined: Mar 2012

Interesting! How did they test, was it by blood? Did they also do saliva? Could it be environmental the reason you and your sister have issues? Thanks for the info, might be a good idea to test.

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

It was a blood draw. We grew up in NY but at age 19 I left and have lived all over the US. So who knows really :) At least I can rule certain things out now! 

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

I had my genetics analysed but since that was as part of the trial I dont know the outcome (yet).  Kidney cancer is regarded as one of the exposure cancers, and I think it was something I did/ate/smelled or whatever.  Both of you involved in the same industry by any chance?

Best wishes,

Fred

stub1969's picture
stub1969
Posts: 796
Joined: Jul 2016

Thanks for posting this.  I'll meet with a genetic counselor as part of my next set of scans.  I was diagnosed with chromophobe RCC at 47, but I was also diagnosed with papillary thyroid cancer at the time of my RCC diagnosis.  Based on having two primarys they agreed to run the tests.  I'm curious about the cost for running this test and the number of our memebers that have had the test done.

Thanks again, Glider!

Stub

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I think the tests can be really spendy. My consult was free and the blood work because I met all of my out of pocket deductibles. I ran it by my insurance company first. I would definitly get an estimate before agreeing. I think having the more uncommon types of RCC it's worth testing to see if they know why. I figure maybe it could help someone else out one day too. If you get the testing done I'd be curious if they find a reason! 

Steph85's picture
Steph85
Posts: 158
Joined: Feb 2018

My genetics screen was negative to. I figured. Its only every other cancer that runs in my family ha! To be fair, my family are big drinkers and smokers so cancer isn't a surprise I guess.. I quit smoking 8 years ago and hardley ever drink and I had RCC. Go figure... Anyway, I'm happy my tests came back negative so I don't have to worry about my boys getting it. You know, I've had pre cancerous moles also removed... That's crazy to hear about the renal cells.. I'm glad your tests came back negative and take care!

Stephanie

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I was more scared of something coming back for the breast/ovarian gene than the RCC one. I quit smoking at age 21 and only have an occasional drink too. I'm going to be skeptical of every single mole now though... 

Steph85's picture
Steph85
Posts: 158
Joined: Feb 2018

My paternal grandmother died from ovarian cancer. I thought that may have been positive, but no. Yay! We got that going for us ha! I haven't seen my dermatologist in awhile. I have a ton of moles I guess I should get checked. 

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

It was recommended for my age 40 at the time and insurance-United Health Care never mentioned just covered it. Genetic counselor  sits and talks about your family history as best you can remember and drew out a graph so to speak and then take your blood and send off for testing.All mine came back negative for the genes can't remember how many they test but it's a lot. It gave me piece of mind to know that I'm not necessarily passing something along to my daughter.

Well worth it to me..

 

stub1969's picture
stub1969
Posts: 796
Joined: Jul 2016

Thanks for the information, Trucker.  I'll start digging into my family history.

Stub

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

I think it's good news!! At least take it that way. Glad to hear it. Hope you're doing well and having a great summer. I get to come out your way in a couple weeks to see my kids and grands. Can't wait!! Anyway, enjoy your good news. But always keep looking!! I would.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Well that's great news!!! I was wondering how it all works because I go for genetic testing in about 10 days. Thanks for the info!!

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I had genetic testing as well my testing had 80 something sets of test. My insurance covered the cost however my genetic couselor said if my insurance didn't pay that the company they used waved the fees and ran the test at no cost. My testing came back negative. I was also told my cancer was more likely due to exposure. I smoked for 3 years in my early 20's so I guess that's a possibility. At this point I guess it doesn't matter how I aquired it - I just want to get rid of it. 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

My doctor didn't mention the correlation. I started smoking around age 13 and was a two pack a day smoker until age 21 when I quit. I was told I have a higher chance of developing Breast or Ovarian cancer even though the genetic markers came back negative through doing the testing. It was also interesting that the test isn't 100%. She said Papillary is one they aren't really sure about yet and in a few years she may want to run it again if new genetic links are found. I've been thinking about you and I hope things are ok. 

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