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Genetic Testing

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

Genetic's nurse called today and said I did not test postive for any of the 24 known cells for cancer. I was worried about the VHL thing!!! Thank the lord, I feel this is great news!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Good for u! I am supposed to be going for this at some point too.

sasha_jax4
Posts: 43
Joined: Dec 2017

i was thinking because I was 37 I should have genetic testing. Glad yours came back good. What brought you to testing?

Kidneybeans
Posts: 39
Joined: Dec 2017

I don’t know all the 24 types. Did they check for oncocytoma? This mimics RCC but is usually benign. It’s associated with Birt Hogg Dube Syndrome As is chromophobe RCC. BHD is a rare condition that causes some non cancerous skin conditions in some people and non cancerous lung problems.

Kidneybeans
Posts: 39
Joined: Dec 2017

theres also a combo type of chromophobe and oncocytoma

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

Sasha, all the reading I have done, the folks on these forums and my doctors said I should get the testing done to check and see what might be happening to my cells. If I had a link it could change my course of treatment and it could warrant a good conversation with my siblings and my child if I had certain genetics links...The biggest push is our age, I'm 40 and for us to get RCC so early is alarming....Rcc sucks at any age but for younger folks it raises a lot of eyebrows....I suggest getting it done, my insurance had no problems paying for it...It put my mind a little at ease as well... 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I just got an appointment for genetic testing. It isn't until July though (welcome to Canada's health system). They will probably think I made up my family history ahahaha. Nine people had cancer (10 incl myself)  and 7 died from it. Crazy!!! I think it will be interesting to see what they say.

Kidneybeans
Posts: 39
Joined: Dec 2017

Maybe check for birt Hogg dube. Annissa do you have chromophobe?

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

No Clear Cell

Kidneybeans
Posts: 39
Joined: Dec 2017

It's genetic

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

I agree that this is good news.  I was 47 when diagnosed with a tumor a little over 5cm.  Turned out to be chromophobe.  At my last scan, the doctor that I saw mentioned genetic testing at my next scan in May.  We'll what happens. 

Stub

sasha_jax4
Posts: 43
Joined: Dec 2017

when I was diagnosed I asked uro about genetic testing. He said no need it was an anomaly at my age with no family history. I have been having a hard time with it. And brought it up a few times only to be shot down. I’m glad to hear you guys are doing it. It makes me feel like I am correct in my instinct to search further. I’m not a dr. And don’t want to tell him how to do his job, but I do understand science and genetics and thought it was worth a look. 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Ready for this? This is why I am being sent:

Dad died from cancer and so did his mom. His bro has it and his dad had it. My mom's mom had 2 types of cancer, 3 bros died from it and her sister also died at 46 from breast cancer. They found my tumor at 38 but was officially diagnosed at 39!! Dr said he is sending me bc I was diagnosed so young with kidney cancer and also because I have a 16 yr old son. It is important to know for his sake. The cancers my family has had are breast, lung, stomach, cervical, skin, prostate and kidney (me). Ugggh lol.

 

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

I get my test results on Tuesday. From what I was able to review online, it appears that I am in the clear too with BHD and Von-Lippel (?). Fingers cross I was reading my results correctly. In addition to the cancer panel specific to the chRCC, I had  the BRCA-1 and BRCA-2 test done. That one also came up negative.

I demanded Genetic testing. I have military health care insurance, and we are lucky to have a Geneticist at our base. There was no reason for them to deny my request since it could be done by an in-house provider.

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

You are your best advocate!! If you are below 47 years old you should have the testing done.It's your life.Politely agree to disagree with the doc!!

sasha_jax4
Posts: 43
Joined: Dec 2017

to those of you who tested negative yay! Anissa my mom had breast cancer, gma had colon cancer and gpa had stomach cancer. Me with kidney. I have an ovary that we are playing the wait and see game, and one negative breast biopsy thank god! I am sorry to hear so many in your family were effected by cancer! I think I am going to push for testing. I have 4 kids I need to know their future and mine.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Uuufff! I def would!! I hope you get someone to listen to you!!

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

I had my follow up with the geneticist. My BRAC 1 and 2 were negative, which I already knew. The lab ordered the wrong cancer panel, so it had to be re- drawn yesterday. On a positive note, the wrong panel did show an uncertain result in the NBN gene. Not enough data for a certain result. The NBN mutation could suggest a higher likelihood of breast cancer. That is the one cancer that we don’t have a family history of, so I hope it’s nothing to worry about in the future. Anxious for my other results. I’ll get those in 4 weeks and will probably follow up within a month of the results coming in. 

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

I was negative for all genetic conditions related to kidney cancer. There was no genetic link to my cancer. In a nutshell, my cancer was just an unfortunate medical issue that came out of nowhere. No prior problems with my kidneys, kidney stones, blood in urine, blood pressure, etc... No family history of kidney problems. (Relatively) young when diagnosed - I had just turned 40. Relatively healthy, worked out, ate decent. I'm thrilled that there is nothing else I need to be concerned about, but that leave so many unanswered what/where/why questions. For now, I will just be greatful and thankful.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

combined with your chromie.... hope you hit the lucky strike and you say **** off c*****

Annie

sorry for my rudeness... it’s my Irish.. other than that I am the most well behaved person on the planet

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Annie,

I must be ruder than you. At first I didn't see that c*****  means cancer.

Steve.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Laughing

You got me laughing 

first you make me cry

now you make me laugh

Lisa7610
Posts: 11
Joined: Aug 2010

Klj15, same here. I believe my cause may have been from consuming too much meat protein and hardly anything else at the time (stupid weightloss diet). Curious if you had similar eating habits prior?

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi Lisa,

I think modern life is carcinogenic. One in three (or more) people will get some form of cancer.

Early last century surveys of people living traditional lifestyles found very low cancer rates.  Whatever else they had, those people had much less radiation, chemicals, pollution etc. to deal with.

I like to think that lifestyle can be protective against cancer, but I can't tell you what lifestyle to adopt to get that protection.

Some of the people on this forum were very fit and healthy but got kidney cancer.

On the other hand I was obese and diabetic so at least I had risk factors for cancer. Cold comfort...

I am getting less obese and less diabetic. That should help.

Did you lose weight on that diet?

Steve.

 

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