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Genetic Testing Complete

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Hello all.  Whew, follow-up appointment with my genetic counselor yesterday, Gloria Morris, MD PhD at Upstate.  She is wonderful if anyone in Upstate NY is seeking genetic testing after a cancer diagnosis.  She's at the Upstate Cancer Center.  No gene mutations were noted after a very comprehensive panel (testing of 50+ genes).  Looks like my bilateral RCC was simply luck of the draw. 

Next up, scans in August and a follow-up with my urologic oncologist. 

Continued thoughts, prayers and strength for all.      

Steph85's picture
Steph85
Posts: 152
Joined: Feb 2018

I had my blood drawn last week for my genetic testing. Im sure I had the luck of the draw as well. You never know though! Hope your doing well, take care! 

 

Stephanie

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Good luck!  Holler with the results.  I'm doing well, thank you.

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

I have a consult May 24th to get genetic testing and will do it as long as my insurance will pay. I hope they will! 

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Fingers crossed for you.  I know insurance and genetic testing can be tricky.  Luckily mine was covered in full...literally zero dollars out of pocket.  This was due to the advocacy of my docs, my young age, the RCC being in each kidney and some cancer in the family.   Nice when the insurance company does the right thing. 

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

I'm 40 and had Papillary Type 2 in my right kidney. And I have a 35 year old sister who apparently has a kidney lesion that was found 2 years ago when she had gallbladder issues and she never followed up on. Still trying to get her to get the follow up done! UGH. She's in NY (Poughkeepsie area) and I'm on the West coast. Makes dragging her there harder. My dad died of Pancreatic cancer at 52. I think those three things together might be enough to get it done. The out of pocket for the consult is $120 if insurance won't pay. I can swing that. It's the potential costs for the bloodwork that are scary. 

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

I'm 38, clear cell in right, papillary in left...totally bizarre.  I have a paternal aunt that died from mRCC...a maternal aunt that died from mBreast...and my paternal grandfather died from Bladder cancer.  Thought there would be some gene mutation for me, but nothing came back and I'll take it.  

Sounds like that should definitely be enough for you.  Hoping everything works out for you!

stub1969's picture
stub1969
Posts: 732
Joined: Jul 2016

LM--good news!  Question, did your insurance cover that cost or was it out of pocket?  Curious about the cost if it is out of pocket.  I have my scans (this will be considered my 2 year check up) in mid-June.  Genetic testing will be one of the pieces of conversation with my doctor. 

I'm sure you'll have good news to share in August.

Stub

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Thanks, Stub.  Insurance fully covered the office visits and actual testing cost.  I was kind of surprised actually.

Hoping Uncle NED pays you another visit next month.  

Living life as normal...all is good at the moment.  Off to Burlington, VT this weekend for some craft beer drinking with five buddies...Mancation 2018 here I come.

Cheers, bud.

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

I don't know anything about this.

Is it more for people who have never had cancer and they want to see if they are at risk for developing cancer?

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

I had papillary RCC type 2. And I'm 40. Those two facts together are really uncommon. I also have a 35-year-old sister who has a kidney lesion she has ignored for two years apparently (Working on getting her to follow up at the moment). He said if it comes back positive for a certain gene than it would change how they do my follow up and it would put a 50/50 risk for my siblings to have the same gene and cancers. I'm working with the insurance company to see what they will cover. Just the consult is $120 without insurance. The issue would be the actual blood work. Once I get the recommendations on which tests she'd like to run, I can take it to the insurance company and see if it meets their criteria. They said that sometimes, based on risk factors and the way the doctor writes it, it can be covered. 

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Genetic testing checks for mutations in certain genes that have been shown to cause/lead to certain cancers.  My understanding is that the testing is a good base-line to help discover the cancer cause (if any) and help plan for future treatment. 

The testing is recommended for (per my Genetic Counselor/Doc):

-A person with a cancer diagnosis at an earlier than usual age, such as breast, colon or uterine cancer under age 50.

-A person with more than one new tumor. This includes someone with bilateral cancer of paired organs such as cancer in both breasts or both kidneys, or a person with more than one type of cancer.

-A person with certain cancers, such as ovarian cancer, male breast cancer, medullary thyroid cancer, or a person with other rare or certain type of tumor.

-A person with excessive colon polyps.

-A family history of multiple relatives with a similar type of cancer.

-A combination of certain cancers in the family history which may be suggestive of an inherited cancer gene. This is not always obvious and should be discussed with your physician.

-A known inherited cancer risk gene alteration (mutation) in the family.

-A person who has concerns about the possibility of hereditary cancer risk.

Hope that helps to inform.  I think the genetic testing piece is important.

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

My response fell below for some reason :)

Mighty Frog's picture
Mighty Frog
Posts: 113
Joined: Jul 2017

Glad to hear this... Speedy recover and NED forever

Angiebby75's picture
Angiebby75
Posts: 174
Joined: Aug 2017

That’s good news. I think I may need to have the testing also. 

AnnissaP's picture
AnnissaP
Posts: 609
Joined: Sep 2017

Wow. Great news. Interesting too as I have genetic testing to look forward to in July lol. Thanks for the info and again...congratulations!

JoeyZ's picture
JoeyZ
Posts: 186
Joined: Mar 2018

That is fantastic news for you, and we're so glad to hear it. Yes, it sure is always nice when the insurance does the right thing! Hang in there.

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