Genetic testing

[larry_dammit]

I was just approved for Genetic testing. Has anyone out there has anyone out there experience with it

[MichaelDD]

Nothing to it. I did alot of past research on relatives with cancer. Questions they asked for family tree history.

I had stage 2 breast cancer at 50. At 62 diagnosed with APC. My personal doctor wanted to be sure I didn't have any genes passing from me to my son or grand kids. I don't. Great I did it also now for Oncologists review and possible future treatments. Good luck!

[larry_dammit in reply to MichaelDD]

Thanks. Did all of that yesterday. Didn’t know if it changed your treatment or not. Thanks

[Magnus1964]

I just had this done. No genetic abnormalities.

[Ralph1966 in reply to Magnus1964]

Can we do a blood test, or we need the surgically removed prostate? My prostate tumor was Adenocarcinoma but they couldn't check the G score because it was distorted due to 1 injection of Lupron. Initial biopsy was G score of (4+5).

[Magnus1964 in reply to Ralph1966]

Lupron should not alter your Gleason score. That remains the same.

[Ralph1966 in reply to Magnus1964]

Here is the surgical pathology:

PROSTATE:

- Prostatic adenocarcinoma, acinar type

- The tumor is bilateral, involving <2% of the gland

- Therapy effect present

- Gleason score cannot be determined due to therapy effect

- No evidence of extraprostatic or seminal vesicle invasion

- No evidence of perineural or lymphovascular invasion

- No evidence of tumor at margins

- Diffuse atrophic changes of non-neoplastic prostate

- Pathologic stage: ypT2cN0Mx

I am having PCa recurrence yesterday my PSA was 0.09 ng/mL. For the last 4 months starting January this year my PSA readings were:

0.020 > 0.030 > 0.050 > 0.090

Is this considered agrassive or quick doubling PSA?

The initial biopsy pathology was (4+5) G score for the right lobe, (4+4) G score for the left lobe.

[Magnus1964 in reply to Ralph1966]

I will have to do some research on this.

[cujoe]

Larry, My cancer center got me into the STRATA genetic testing clinical trial back in the Fall of 2017, or about four years after my RALP. It was free to me and is a clinical trial to match patients with possible treatments. It requires tumor tissue (not sure if needle biopsy would qualify) for the testing. Coming from a family with near universal cancer diagnoses, I was surprised that I had no defects. The test at that time looked at a total of 120+ defects in four different categories. Since it was done on four-year-old tissue from my RP, and prior to the 8 weeks IMRT and a subsequent single round of 3-mo ADT, there may well be defects now that did not exist then. At this point, I plan to wait until there is a compelling reason before doing any additional genetic testing.

Here is a link STRAT website for you and any others who might be interested. I have also copied the trial description and linked the basic qualification requirements and the participating locations. It appears the trial is still open - See list of participating centers below.

The Strata Trial is a precision oncology collaboration structured as an observational master screening protocol with the aim to match patients to genomically-guided therapeutic protocols and/or approved therapies. Subjects enrolled on the Strata trial will submit surplus, clinical formalin fixed paraffin-embedded (FFPE) tumor specimens for molecular profiling and a test report will be provided back to the investigator. For those subjects identified as having molecular variants associated with an affiliated therapeutic protocol and/or approved targeted therapy, the Strata report will provide additional relevant information

STRATA oncology

strataoncology.com/

Clinical Trial Web Page

clinicaltrials.gov/ct2/show...

Inclusion Criteria:

Subjects must be ≥ 18 years of age.

Subjects must have histologically documented solid tumors or lymphoma.

Specific criteria for individual tumor types are as follows:

Subjects with glioblastoma.

Subjects with pancreatic cancer are eligible at any stage of disease.

Subjects with rare tumors (i.e. cancer started in an unusual place in the body, it is unusual type and requires special treatment) are eligible at stages II-IV

Subjects with other tumor types must have recurrent, relapsed, refractory, metastatic or advanced stages III or IV cancer.

Subjects must have an adequate formalin-fixed paraffin-embedded tumor specimen for genomic sequencing.

Study Locations

clinicaltrials.gov/ct2/show...

I believe that the more information you have, the better treatment decisions you are able to make. Be Well - cujoe

[ctarleton]

I had a saliva-based test for inherited genetics at the BRCA Lab at UCSF a few years ago. A genetics counselor gathered my family history and sent the sample off to Southern California where approx. 54 genes were tested by Myriad. All I had to do was drool. All mine came back as "negative", in terms of increased risks or potential treatment options, such as a PARP Inhibitor for something like a BRCA2 genetic defect. This was useful info for me, and also for my children. At the time, it cost about $2,500 which was covered by my insurance. Since those days, some less expensive prostate cancer tailored tests have become available. Considerably more info is on a genetics page on Tall Allen's blog, Prostate Cancer News, Reviews & Views.

pcnrv.blogspot.com/search/l...

(In later stages of prostate cancer the genetics of tumor tissue, itself, can be assessed to see how it may have mutated and evolved. Some major research sites have a tailored in-house capability to test several hundred genetic variants. There are also places like Foundation One where metastatic tumor tissues can be sent for analysis. Their website has more details.)

Charles

[larry_dammit]

Has anyone had a cancer treatment changed due to the genetic testing. Looking for a ray of hope here 🙏🙏

[ctarleton in reply to larry_dammit]

I have met a small minority of men in advanced prostate cancer support groups who were BRCA positive, and that reportedly did influence their treatment/clinical trial decisions in the direction of PARP inhibitors, such as Lynparza (Olaparib), or related agents. The Phase III type clinical trials continue for Lynparza vs. Zytiga or Xtandi in castrate resistant metastatic prostate cancer. Some results may start coming out after 2020. The earlier Phase II trials comparing things like Zytiga with/without Lynparza for selected individuals showed some promise, but not huge overall survival advantages, statistically. As usual, individual results can sometimes beat the group "statistics".

[Blackpatch in reply to larry_dammit]

Larry

I had short PSADT after RRP so had DECIPHER run in the US on a piece of tumour, and it came back with a very high (= nasty) score of 0.91, along with bad news on several individual genes related to proliferation.

But the good news was that I had a very high score on a genetic index that predicts response to salvation radiation - I had been pretty equivocal about eSRT but that score pushed me over the edge and I had the radiation done, finishing theee weeks ago. PSA is now undetectable, although this would be the case anyway because I have started a couple of years of ADT to help wipe it out (hopefully).... but you wanted someone who’d had treatment impacted by genetic testing, so I reckon that should do it for you...

Stuart

[Vindog29 in reply to larry_dammit]

My husband goes to Memorial Sloan Kettering in NYC since diagnosis Feb 2018 initially did genetic test and gene mapping of lymph node abdomen all negative,stage 4 cancer spread to lymph nodes,PSA 12,72 years young, Gleason 10,.did chemo ,started zytiga ( neither worked ) and Dr Morris decided to do another biopsy of lymph node this time from pelvis to gene map came back over 60 mutations,1 being msh2 mutation which keytruda FDA approved was started Friday . Another genetic test was ordered just to make sure it wasn't passed down,did tumor protein stain which was negative,it was a somatic mutation which happened after. We are hopeful the Keytruda will work. He feels fine still working at 73 and is even going Turkey hunting .Sorry for long reply just wanted to answer your question...always a miracle waiting around the corner

[j-o-h-n in reply to Vindog29]

I don't know if I mentioned this before (you know our memory sucks nowadays) I also am a patient of Dr. Morris, and will see him in two weeks.

I also take Keytruda for a lung melanoma and so far it's working.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/15/2019 6:37 PM DST (Uncle Sam's Birthday

[Vindog29 in reply to j-o-h-n]

Yes I had the great pleasure of hearing that you did share Doctors and now Keytruda which my husband started fri with no reactions (knock on wood). He goes again May 3rd for his 2nd treatment then going Turkey hunting straight from there in the wilderness...bc of his msh2 we are hoping it works...how LUCKY to have a chance with an FDA approved med...thank you for you great sense of humor hope one day we get to meet

[j-o-h-n in reply to Vindog29]

Yes I do hope we do meet someday. Turkey hunting hmmmm I'll give him my ex-wife's address..... take careful aim she's a real gobbler.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/09/2019 8:30 PM DST (Uncle Sam's Birthday)

[2dee]

Genetic test is a regular blood test draw.

Someone came to house, did the draw and called back with results i think a couple weeks later.

Positive for BRCA2 mutation.

Likely passed down from grandfather, (died PCa at 81), through my mother, (died 53 after 5 years of breast cancer), to me I'm 76. Dx incurable stage 4 prostate cancer, metastasize throughout bones, blood, etc a year ago with 1303 PSA. Now <2.

My only daughter tested negative for the BRCA2 mutation.

My aunt and 7 of her children all died early of various cancers. 2 other aunts and children are OK.

Had I been given a Genetic test years ago because of family history and a slowly rising PSA I would likely chosen a more aggressive treatment and possibly been "cured", maybe.

Now there is new use of a PARP inhibitor used exclusively on BRCA2 mutations, so testing can be helpful in many ways.

Get the test, encourage bloodline family to as well.

2Dee

[hersheyboy in reply to 2dee]

How did you arrange this test?

[2dee in reply to hersheyboy]

First step contact a "Genetic Counselor" through your hospitalization insurance.

AFTER they interview you, (may even be on the phone as mine was) they confirm (for insurance purposes) whether you are a candidate for "Genetic Testing".

For example, Parents, grandparents, siblings with cancer. Certain types of cancer are more likely to fit their testing requirements.

My Genetic Counselor then set up an appointment with a staff member to come to my home and do a small blood draw. Then that person left me some literature, and took the sample and sent it to a Genetic Testing Lab to do the evaluation and I received the results first through a phone call and then some documentation.

I don't know exactly what genes they researched, I was primarily interested in the BRCA1 and BRCA2 genes. I read that if they have mutated then the person is likely to have much higher chance of getting certain classes of cancer. Breast, Melanoma, Prostate, maybe Bowel, whatever.

Because of this evaluation process THEN my insurance carrier and MEDICARE agreed to pay for the testing.

I was positive for a mutated BRCA2 gene likely inherited from my Grandfather, through my mother. My daughter tested negative so that mutation stops with me.

I have had 4 different cancers, Melanoma and Prostate Cancer among them by age 76. Knowing earlier would likely have allowed me to react earlier to the rising PSA number and also likely to have been "cured" or reasonably so.

After the PCa has metastasized to the skeleton it basically is incurable in most cases. Catching it while still in the prostate may be curable or controllable.

Knowing about the BRCA2 mutation means that certain new off label uses for PARP inhibitors may give me some help when the Lupron no longer works.

2Dee

[larry_dammit in reply to hersheyboy]

My oncologist was the one that decided to have me tested, he arranged to have them call me and set up the questionnaire and followup

[Jdbnord]

sammamish

[Litlerny]

Hi Larry...I had the Guardant 360 done a few months ago. Came back positive for ATM gene mutation. My Mayo M.O. said my numbers were very low (I think it was 0.08). The two PARP inhibitors in clinical trials (Olaparib and Rucaparib) have thus far been much more effective for BRAC 1&2 mutations than for ATM mutations. Given the above, and the fact that I’m still doing well on ADT (although my PSA has crept up slightly from <0.10 to 0.19) he suggested I stay on my current therapy for now. I also had an Axumin PET scan done a couple of months ago. No uptake at all in my bones, including my original oligometastatic tumor on my inferior pubic ramus, and only slight uptake near my left seminal vesicle. He and I are of the same school of thought to be aggressive, but save the weapons until they will do the most good. I think we’re both hoping they develop a PARP inhibitor, or tweak the existing ones, that will be more effective for ATM gene mutations.

Best wishes to you. 😎

[dentaltwin in reply to Litlerny]

Just to be clear--is this sequencing of somatic (tumor) cells or germline sequencing (hereditary)?

[Litlerny in reply to dentaltwin]

Germline

[dentaltwin in reply to Litlerny]

Thanks.

[larry_dammit]

Thanks Guys and Girls fr your info. Looking forward to finding out what the future looks like. Fight the monster 🙏🙏🙏🙏

[Survivor1965]

Mayo asked me to do genetic testing 2 months ago. Said if it was positive it could affect my kids future.

It was a blood test and it was negative for abnormalities

[larry_dammit]

So no change in your treatment 😢😢

[Magnus1964]

I just had mine done. For me the test showed no abnormalities for the BRAC 1 AND 2. If it had my research doctor would have decided on a different course of treatment.

[elainea53]

My husband had genetic testing mainly because we have 3 grandsons. Everything was fine.

[Tall_Allen]

Germaine or somatic?

[ctarleton in reply to Tall_Allen]

Good old auto-spell correct. Germ line becomes germaine. Ha. Ha.

[dentaltwin in reply to Tall_Allen]

I'm not aware of germline mutations being actionable--though it's certainly possible it's done. (I'm unfortunately more experienced reading about sequencing for actionable targets in tumors--esp. in NSCLC).

[dentaltwin in reply to dentaltwin]

Sorry, I'm obviously not up to speed, as here:

ascopost.com/issues/decembe...

[Tall_Allen in reply to dentaltwin]

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

[dentaltwin in reply to Tall_Allen]

Thanks, Allen--this is a great outline. I have one question. You write that a "full genomic analysis of BRCA2 would cost somewhere between $2,000 to $3,000." By this do you mean running the entire genome? It is only 1 gene, after all. Given that Decipher tests for 30 genes associated with impaired DNA repair, I'm not seeing how they achieve that savings.

[Tall_Allen in reply to dentaltwin]

A gene can have thousands of base pairs. Sometimes just one (single nucleotide polymorphism - SNP) is enough to cause a problem. Sometimes a whole set of them is needed for a malfunction. A full genomic analysis runs the bases of the entire gene. Tests like Decipher have identified the only the more serious anomalies and just looks for those. A man in my support group may have a mutation (his sister has it) where an extended set of base pairs is missing - it's a one in ten-million anomaly and the cheap tests don't look for it.

[dentaltwin in reply to Tall_Allen]

Thanks for the clarification.

[DSEE]

Had liver biopsy Monday the 8th where they took 11 core samples and sent part off for genetic testing.

The purpose was to confirm the lesion on liver was prostate cancer and then to send samples for genetic testing.

No results yet.

[gleason9guy]

I had genetic testing done. I appreciated the opportunity, but the test revealed nothing helpful in regard to my prostate cancer.

[GAdrummer]

Genetic testing, germ line and somatic were done several years ago and the mutations found were not actionable at that time. Now the MO thinks Ibrance off label would be next step because it does work on one of the mutations.

[marykg46]

I'll be keen to follow up how you go as my son is keen to have it done having both his dad and grandfather with PC

[jimbay]

So are you asking about epi-genetic type testing, like Decypher or Prolaris, or genetic type testing for BRCA mutatations? I've done all the above. More inforamtoin is always useful. Anything I can tell you?

[larry_dammit]

Think we are going to start with the Braca genes but was told that we would be looking at a wide variety of genes. Test hasn’t been scheduled yet.

[tallguy2]

Larry,

I had the "saliva in a cup" 83-genetic mutations test. This is about 25% of the number of gene variations that FoundationOne tests for. All of mine came back negative, including BRCA-1 and BRCA-2.

Please keep us posted.

[mklc in reply to tallguy2]

Good morning and how are you?,

Could you let me know

1) what the name of this test is?

2) the name of the company that does this test for 83 genetic mutations?

3) the cost if you know what it is.

Thank you so much and good health to you.

[larry_dammit]

Will do 👍👍👍

[Mkeman]

I was told by my MO that at the recent prostate cancer national forum it was recommended that all pc patients get genetic testing to better pin point treatment plans. Google “Foundation One” for a lot of information about the process including low fees if your insurance doesn’t cover it. I signed up yesterday.

[Bcgkelly]

I had it done and was negative. It appears my dad’s cancer heals no connection to my own.