Genetic Testing

[Cmdrdata]

I had just switched oncologist and he has scheduled for this test to be done. Appointment in a few days. Those that have done this, please what does it entails? Blood draw/urine/or saliva, or worse case, biopsy? I have never done this previously. I think someone here said Foundation One sends you a kit and you mail it back. Thanks.

[ctarleton]

There are various providers who will do the genetic testing. Many oncologists who are treating men with your treatment history will likely be using this genetic testing to rule out if you may be one of the approximately 12% of advanced metastatic men who carry an inherited germ-line mutation, for which there may be some different treatment/trials options. It's usually a simple "spit test", where you drool into a little container which gets mailed away to a lab. A little while later you will get a test results page. If you should show up "positive" for certain genes, it may tilt your treatment decision(s) in the direction of a PARP inhibitor or a Platinum-based drug or clinical trial. That information could also be useful for family genetic counseling purposes. Overall, "odds are" that 7 out of 8 will get "negative" results on such tests, and the usual standard of care decision-making process will proceed. If anything comes back "positive", please feel free to come back here and pose any new question you may have.

Down the road, you might get involved in trying to determine the genetic mutations in pesky metastatic cancer tissues, themselves. Those would involve biopsies, and sending them out for analysis of up to 500-some-odd genetic features. Some of these are commercially available from places like Foundation One. Others might be done "in house" at larger research centers.

Keep asking your doctor exactly what test is going to be done, and how it may be covered by your insurance. You can also often go on-line and get some extra information about the details of those tests, above and beyond what may be in some brochure you may have been handed.

Good Luck!

Charles

[Advo__cate]

My husband had this done several weeks ago, it is a blood draw. He was tested for is AR-V7 and is positive. This prompted the MO last week to take a second blood test for more genomic testing. It took our MO about 4-6 weeks to get the results back. Hope this helps and the best to you...Hoping it is negative.

[6357axbz]

This is a bit confusing. Based on the responders we have three different answers, spit, blood and biopsy?????

[Advo__cate in reply to 6357axbz]

This is our experience - It was a blood test for the AR-V7 and more blood taken in MO’s office and sent to Foundation One for 300+ more. Hope that clarifies.

[Philly13 in reply to 6357axbz]

I had the blood test last year which showed no signifigant genetic markers. Since my disease started to rapidly progress in the last couple of months, my Doctors have mentioned testing prostate tissue that was removed with the RP and also looking at a biopsy of the lesion. I believe the lack of blood markers is a positive for my son and daughter. I have a follow up tomorrow and expect to find out more about testing diseased organ and the tumors which have become evident in my skeleton. I remain asymptomatic and don't know if that has any bearing on which are more appropriate. My preference will be to get any information that can help refine treatment protocols to target specific circumstances. I expect (hope) there will be continued progress in treatment options for specific mutations.

[Tall_Allen]

It depends on what kind of genetic test you will be getting - somatic (tumor) or germline (inherited). The method varies with the company doing the analysis.

[6357axbz in reply to Tall_Allen]

A solid perspective from TA, as usual...

[p3d1]

It is best if you can get a simple blood test to check for a genetic loss (germline or inherited) and a tumour biopsy test to see if the genetic loss is only in your cancer cells (somatic). The tumour sample you may already have, i.e TURP, or Biopsy cores. These samples can be genetically tested even after years of storage.

Many people have a somatic loss only, so a blood test will not tell you the full story.

[2dee]

What Charles said...

Knowing I am BRCA2 mutation positive inherited from Grandfather helps me obtain different treatments and pass warnings to my cousins and my bloodline.

2Dee

[Bigdo58 in reply to 2dee]

Me too!! Bad luck Bro! We have a cancer 'hotspot' registered for our whole family at the Peter Mac Cancer Centre, Melbourne, Victoria - Australia. Some young daughters in our family have sadly but possibly wisely chosen to have breasts off and ovaries removed quite young as a result. I have informed both boys and girls who are related of the risks with varying success - personal choice, hard to accept your mortality at a young age.

[2dee in reply to Bigdo58]

Though my ##s good <2 from 1300+ I understand that I (you), may qualify for the off label PARP inhibitor used with some reasonable success lately.

2Dee

[Bigdo58 in reply to 2dee]

Thx 2 Dee...I haven't gone back to Peter Mac again yet on this...using a local rad onco only (a Professor though). Looks like I'll head BCR x2 mid next year but you know, 8 yrs in since robotic & 3 yrs since Zytiga 6mnths + 70gy EBRT bed, pelvis etc for 1 x BCR. So not a shocker, I am a bit young though. I will be offered just ADT mid next yr, maybe clinical trials after. I got to as low as .01 stable for a year post rads....more than doubled again last 6 mnths at .09. When you say 'off-label' PARP I am new at the drugs side of the fight, are you saying clinical trial PARP?

[2dee in reply to Bigdo58]

"off label" means using a drug that is FDA approved for in our case other than PCa. Insurance usually won't pay because it is NOT approved!!

But, hey, it's working for some.

My Gfather at 81 with PCa, my mother at 47-53 after aggressive breast cancer with Mets. I'm 76, had 4 different cancers.

My aunt and 7 of her children died young of various cancer. It missed my other two aunts and their children.

A positive BRCA 1-2 or lack is no guarantee. Positive I believe makes you 70% more likely though.

I worked hard tracking down possibly positive members, gave them copies of my reports so their insurance should cover the test.

Had I been tested sooner it is possible that I could have treated for a cure. My Dx when finally done basically said I was done 6 months ago. Words to the wise if you can get genetic test and thereby save some family members will be all good.

2Dee

[Bigdo58 in reply to 2dee]

Ah ok...good stuff to know 2 Dee. See in OZtralia, we have a split medical system, some Federally funded and some private (particularly specialists like surgeons & many hospitals), so local I am seeing a private Onco in a private hospital (which is where I have had my Rads) but Peter Mac is a Federally funded Cancer specialist hospital which also attracts heavy benevolent donations. So where I go local I will pay for everything but it is still quite heavilly subsidised by the Feds...Rads say were 28K oz and I only paid 1k of that..if I can interest Peter Mac in me everything is free and the surgeons there also are top private operators across private hospitals as well. So as I had my genetic test at Peter Mac (which is 1200ks away, so I fly in) all free, 7+ years ago now, I think I am probably best to head there again if I get seriously down the psa path again. In the interim my wife of 35 years has unfortunately died as well though (Oct '17) so I have issues re leaving my home vacant now (I live on acres 200k from Sydney)..doggies to board out etc. Hence my attempts just to stay local @ stomach costs.

[monte1111 in reply to Bigdo58]

Ouch.

[Bigdo58 in reply to monte1111]

Thx Monte!

[Cmdrdata]

Y’all are are a wealth of info, and I THANK YOU for your responses. So it seemed that my test will most likely be “germline” via blood draw as I did not provide them with any info regarding where my biopsy was taken (2006). I have no known met at this time, and PSA “undetectable” under Zytiga. My new Onc did mention BRCA1/2 during our initial consult. Thanks again.

[Bigdo58 in reply to Cmdrdata]

I had germline via bloods, BRCA 2 positive (of course! Only Sister dead very fast from breast cancer at 57, so I anticipated the worst).

[larry_dammit]

Just did the genetic test,unfortunately they didn’t find any genetic problem that they or the doctor could use. One field was abnormal but no one knows what it is yet. Good luck out there 👍👍

[j-o-h-n]

Blood (and cash)...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/05/2019 5:59 PM DST