Genetic Testing

I'd like to know who has had genetic testing, which test they got and if it was able direct their treatments in a beneficial way. I'm trying to learn more about it and especially interested in first-hand experience. Any details would be appreciated. Thanks in advance.

[Hidden]

Thanks for the information. Were you able to use the results of the test to direct your treatments?

I know someone with BRCA-2 and he is staying the course on ADT right now because it is still working for him, but I expect at some point after that stops working, they will switch him to something to target it such as a PARP inhibitor.

[ctarleton]

Hi Gregg, On 8/22/2016 I provided a saliva test sample to the UCSF Hereditary Cancer Care Program, UCSF Center for BRCA Research, along with a family cancer history.

It was a referral from the consulting advanced prostate specialist at UCSF.

brca.ucsf.edu/

The purpose was to explore whether I might have any of the more common inherited mutations that have been found to be involved in around 1/8 of advanced prostate cancers.

The sample was sent to Ambry Genetics in Southern California for sequencing, deletion, and duplication analysis of 55 common familial cancer genes.

Here's the link to the specific test, and the exact 55 designated genes/variations tested:

ambrygen.com/tests/customne...

Here is another link with more details about those genes, and their corresponding familial cancers:

ambrygen.com/tests/cancerne...

My Results: I tested "Negative" for all 55 tested genetic variations.

(Medicare + my secondary insurance covered the cost, without any copay for me.)

This information was useful to me to pass along to my family, in regards to BRCA 1/2 status in particular for my daughters in the context of breast cancer, and also to my slightly younger brother who still has completely normal prostate/test/PSA indications, to date. It also helped rule out things at UCSF in regards to any clinical trials or treatments involving Olaparib (Lynparza) or BRCA status, before I subsequently started Xtandi.

Tall Allen's blog has a nice page about a comparable, and probably less expensive test, Color Genomics.

pcnrv.blogspot.com/2018/02/...

If I some day have problems with a specific evolved "met", I would consider additional testing using actual harvested tumor tissue rather than saliva, such as Foundation One. Somatic vs. Germline, etc. (That's a gray area for me now, perhaps around some unpredictable corners on my road ahead. Might as well enjoy the current ride and sunshine while I try to stay out of the ditch. Ha. Ha.)

Charles

[tallguy2 in reply to ctarleton]

Thanks for this helpful information. When I see my MO this Thursday I'll ask about this testing.

[Hidden in reply to ctarleton]

Thanks for the information Charles. I'm learning a lot here.

[Hidden]

So if you have BRCA-2, it sounds like the PARP inhibitor is basically kept in the back pocket?

[DenDoc]

Gregg,

Like Nalakrats, I had tissue from a biopsy analyzed by Foundation One. It was paid by Kaiser Medicare Advantage and though I was advised there might be a co-pay, I have not seen it yet. My tumor has morphed into a small cell cancer (neuroendocrine) in my lung and pleura. I am on chemo with carboplatin and etoposide right now. My oncologist is researching a next step based on the genetics. Looks like a drug used for ovarian cancer might work based on the genetic testing of the tumor. It gives us hope that there is something more to offer.

I have not spoken to Foundation One but letting my MO do the research. The report is as described with all the clinical trials. I would be tough to fit in one of them due to multiple treatments in the past.

I am that Gleason 6 guy who has had PCa for 21 years and was going to die of some other cause-Looking like cancer is going to win this one but we continue the fight.

Bob

[Hidden in reply to DenDoc]

Thanks Bob, sounds like you are using a good approach. I just read that with neuroendocrine PCa Carboplatin works, but if you can find mutations it's possible to go further with targeted treatments if they are available. Please let us know what they find in the biopsy. Hope you get good results from you chemo treatment.

[DenDoc in reply to Hidden]

Gregg,

My most recent PET Scan showed no new pleural lesions and no change in the ones I have. My malignant effusion has leveled out at about 65cc per day. MO felt we should finish all 6 rounds of chemo before trying the targeted therapy. I am tolerating the chemo well so next week we start again if my blood count is okay.

[Hidden in reply to DenDoc]

Sounds like you have a good doctor. From what I've read, doing the chemo first is the right approach.

[Dan59 in reply to Hidden]

Gregg, I think You know my story, I would have prefered the quadrant blood test, but instead they were going to do robotic surgery to get a sample of my pelvic nodes, supposed to be in and out the same day, instead it turned into a full open Surgery with 10 days in the hospital and really a 2 month recovery if not more, that really set me back longer, they really found nothing of significance at Foundation 1. It is my understanding that 30% will find a significant genetic mutation. 62 years old today, yahoo!

Dan

[BerkshireBear]

I'm not sure where you are at in this process, certainly Ctarleton's explanation is very useful. If you are someone just discovering you have PCa I can relate an experience from our local PCa support group. A new fellow came in last month, recently diagnosed with just a small bit of cancer in one biopsy sample out of twelve. And it was Gleason 6; and no other complications. So normally he'd be a prime candidate for Active Surveillance. However, his doctor sent the sample off for genetic testing and the cancer was determined to be one of he most aggressive strains. That changed his perspective rather drastically, he scheduled surgery ASAP.

This is the other end of the subject from what others have covered, but it shows the importance of using the excellent new tools that are coming available. He was fortunate to have his diagnostic workup done at one of the hospitals that is at the forefront of PCa research.

[Hidden in reply to BerkshireBear]

Thanks for the reply. It's difficult to determine which prostate cancers will be more aggressive.

[elainea53]

My husband has had testing for mutations, guardian360.

The main thing it showed is a jak mutation. They does affect treatment. He also had genetic testing, mainly because we have grandsons. Results not back.

[Hidden in reply to elainea53]

Thanks for the response. Please let us know what they find.

[Ken51]

I used the Mi-Prostate Score (MiPS) after my PSA went above 4. I was monitoring my PSA for 18 months, and was having some urinary symptoms (frequency, slow flow) and was hesitant to have the biopsy, so i wanted something else to give me some peace of mine as to what was really going on. Had doctor order the kit, ( less than $200.00 us) and once I received my results it indicated a 95% chance of cancer and a 65% chance it was of the aggressive type. I then proceeded with the biopsy which showed a 4+3. I then had robotic surgery.

[Hidden in reply to Ken51]

Thanks for the input. There are so many variations of this cancer, it seems to make sense to know more specifically what you are dealing with so you direct treatments more effectively.

[vandy69]

Hi Gregg,

Over the years of treatment, I have had 4 Guardant360 liquid biopsies, requiring 2 vials of blood. Over time you could see changes in genetic defects, but most had no treatments.

One test revealed an ATM defect, so Dr. Snuffy Myers prescribed Lynparza, a PARP inhibitor, which worked for about 9 months.

All tests fully covered by Medicare.

Best wishes. Never Give In.

Mark, Atlanta

[Hidden in reply to vandy69]

Thanks Mark. ATM and BRCA mutations are both treatable with PARP inhibitors. 9 months is a decent amount of time for that to be effective. What did you change to after that?

[vandy69 in reply to Hidden]

Hi Gregg,

After Lynparza, PSA started to rise, had Axumin scan, then MRI found mets in liver, so had 6 cycles of Docetaxel/Carboplatin chemo.

Mark

[johngwilk]

I've had two genetic tests done — one through Color Genomics ( color.com ) that does hereditary testing via saliva sample, and one through a study that did a more thorough test of a tumor tissue sample.

The hereditary test found nothing, but the tumor sample test found a relatively uncommon CDK12 mutation that opens up a variety of treatments, including carboplatin, PARP inhibitors, and checkpoint inhibitors.

[Hidden in reply to johngwilk]

Many of these mutations develop over time with treatment. Your experience shows the value in doing the testing to open up new avenues for treatment.

[tallguy2]

Thanks for this great information! Very helpful.

Q: I am half-way through Taxotere chemotherapy...should I look into the genetic testing now or wait until the fall when chemo is complete and I am "re-staged" (I have been stage IV, Gleason 9 since diagnosis)?

[Hidden in reply to tallguy2]

Are you castrate resistant? The longer you go on treatment, the more likely you are to have somatic mutations devoloped from the pressure of treatment on the cancer. A very high percentage of patients that are castrate resistant have mutations.

[tallguy2 in reply to Hidden]

I'm not sure, probably not. I was on a 2-year ADT holiday when a chance MRI revealed abnormal lymph nodes; subsequent scans reveals mets in spine, lymph system. Jumped back into ADT and started Taxotere.

I called Foundation One and got everything I need to have a conversation with my MO on Thursday. Thank you so much for posting!

[tallguy2 in reply to Hidden]

I have new information. After 3 Taxotere treatments and 2 months back on Eligard ADT (after 4 years on ADT, then a 2 year "holiday), my PSA has dropped from 5 to 0.5.

Sounds good, right? Unfortunately, the ADT is no longer effective, in my view.

I've requested the Foundation One testing; expect to hear more in August.

Precision medicine is going to be key for those of us with metastatic PC. Keep up the good fight!

[Hidden]

Here's an article I found about testing for somatic mutations in CRPC. Here's a quote: In metastatic castration-resistant prostate cancer (mCRPC), up to 90% of patients harbor a somatic genomic alteration that may be clinically actionable.

gucasym.org/daily-news/soma...

[tallguy2]

I called Foundation One and got everything I need to have a conversation with my MO on Thursday. Thank you so much for posting!