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genetic testing

lowT163 profile image
39 Replies

morning all

My question is about genetic testing for prostate cancer.

Is there a test that will show that family members are likely to get prostate cancer if one actually does have it? Thinking about my nephews. I have no children. Told my nephew who is 47 to start getting the testing and his family doctor refused until he hits 50. Personally I had 2 guys in my radiation group that were 43. One was a doctor.

‘Thanks

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lowT163 profile image
lowT163
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39 Replies

A psa test through quest costs $40.

A birthday present? :)

lowT163 profile image
lowT163 in reply to

can’t force the dr to do the digital exam. In my case psa was worthless. Pretty sure mine was cancerous at 1.4. At 4.20 the tumor was out of the prostate big time.

Llcoleman profile image
Llcoleman in reply to

my husband has the FANCd2 mutation, which can be hereditary and be a contributor to several cancers, male and female. His genetesist advised that IF our children chose to have the DNA test that they have all the life insurance they wanted/needed ahead of time, as once they are deemed to have the mutation it could be a barrier to them getting insurance.😢

lowT163 profile image
lowT163 in reply to Llcoleman

never thought of that one. I’m surprised the insurance companies aren’t doing the tests themselves.

Clouds_69 profile image
Clouds_69 in reply to lowT163

I've seen a geneticist, and plan to get tested. She did give me this information: "Other issues associated with genetic testing were discussed, including the possibility of uncertain or uninformative results, potential psychological impact on self and extended family members, the possibility of health and life insurance discrimination and the protective laws in this regard, and the continual evolution of best management and screening practices." I've raised the question with my children about whether they wanted to know the results and, if I've got mutations, if they wanted to be tested as well.

mrscruffy profile image
mrscruffy

I am BRCA2 positive, the testing agency tested siblings, nieces and nephews for free. My brother has gene but no one else. He doesn't have cancer

lowT163 profile image
lowT163 in reply to mrscruffy

my reason for asking is the doctor saying that nephews don’t count as a close enough relative to be genetic cause of the cancer. Just sounded wrong.

mrscruffy profile image
mrscruffy in reply to lowT163

Sounds wrong to me, my niece was just married and is planning on a family so she gladly tested. I was told by geneticist to have them tested

Bigdo58 profile image
Bigdo58 in reply to lowT163

If you have a gene fault like BRCA 2, like I have, and my sister 99 % had (passed aged 57 breast cancer, 3 months from diagnosis but not gene tested) her children as my nieces (like your nephews) are deeply exposed. Their choice of course, all you can do is advise testing. I'd suggest getting a baseline psa at age 40 like I had, then annual checks. Mine was picked up solely on psa change at age 53.

lowT163 profile image
lowT163 in reply to Bigdo58

I think I was confused about what gene tech could actually find. I was thinking that all prostate cancer had a gene or lack of to look for in every man.

Bigdo58 profile image
Bigdo58 in reply to lowT163

Okay, yes. The gene stuff is very confusing. Was an expensive test in 2012 when I had mine (in Melbourne Australia) but I was done at PeterMac, a public hospital, so free. I was also of interest to them as I had prostate cancer, was having the then new to Oz Da Vinci 3D robotic prostatectomy and my extended family in that State had a registered cancer 'hotspot' with them.

tango65 profile image
tango65

You could get a germline test {saliva or whole blood}, just to look for mutations such as BRCA, ATM, etc. abd HOXB13.

I think there are not tests that apply to second degree relatives or even first degree except for the mutations described above since hereditary cancer is related to the combination of large number of genes.

I believe the doctor is right, however if you were BRCA o HOXB13 positive I think they should get tested.

lowT163 profile image
lowT163 in reply to tango65

just think it is lazy dumb to not test when it’s in the family. Been at this for 5 years and what I know for sure is they know very little for sure. I’m still explaining to guys that a colonoscopy doesn’t test for prostate cancer.

tango65 profile image
tango65 in reply to lowT163

You said it is in the family. Who other of their relatives besides you have PC?

lowT163 profile image
lowT163 in reply to tango65

no one luckily. To me that’s more reason to get tested because we just don’t know why.

If it is food based like my drs have always thought these guys today eat worse than me. Never forget the 43 year old doctor in my radiation group that the surgery showed the cancer got out by 1mm. He couldn’t convince anyone to do the biopsy and waited to long. It was in his family. His father.

Tall_Allen profile image
Tall_Allen

The Color Genome Dx test is good and inexpensive for your relatives:

prostatecancer.news/2018/02...

You can get it for free if you have prostate cancer through the PROMISE registry:

prostatecancerpromise.org/

john4803 profile image
john4803 in reply to Tall_Allen

I had the following tests with the Color Genome Dx for free (had no mutations) 8/1/22:

APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4, CDKN2A (p14ARF), CDKN2A (p16INK4a), CHEK2, EPCAM, GREM1, MITF, MLH1, MSH2, MSH6, MUTYH, PALB2, PMS2, POLD1, POLE, PTEN, RAD51C, RAD51D, SMAD4, STK11, TP53

lowT163 profile image
lowT163 in reply to Tall_Allen

Is the doctor correct that unless your relative is mom or dad there is no hereditary issue with prostate cancer?

lowT163 profile image
lowT163

Thanks TA

Anesthesia96 profile image
Anesthesia96

Have them consult with a urologist, mine was WNL in my 40s but still too high, or change doctors. This doesn’t sound reasonable considering the low cost of testing.

lowT163 profile image
lowT163 in reply to Anesthesia96

first thing I said to him. Hope he does. Doubt he will go against his doctor of 30 years.

Blueribbon63 profile image
Blueribbon63

I am PC w Mets. Just had a genetic test done. I have family history, my grandfather on my father side died from PC, I have several members in the same side of the family with other types of cancer. The test came negative for family risk and a 'just lucky you' got it. (Not on those exact words) I am not too convinced. My three brothers have had PSA tests done as soon I got diagnosed 4 years ago. They all have normal levels of it.

lowT163 profile image
lowT163 in reply to Blueribbon63

normal levels is what gets me the most. My PSA was a high of 4.2 and the tumor was out of the prostate against my rectum. I had a tumor they called a nodule without cancer 1 year earlier. They missed the cancer when they did the biopsy though they never said that. So my PC was cancerous at 1.5. Psa test without the finger probe in my case was worthless.

turkeyjoe1 profile image
turkeyjoe1 in reply to Blueribbon63

I also had genetic testing done. They came to the house and draw 2 vials of blood. Family history on my dad side, everyone had some form of cancer from Grandma on down. Dad died from PC. It took 23 years. Mine came back free from all mutations. They told me that they would test my kids for free if I had a mutation. Otherwise it was a $400 test.

lowT163 profile image
lowT163 in reply to turkeyjoe1

I like the 23 years part. Good news is I have no kids. I stuck with Labrador Retrivers.

EdBar profile image
EdBar

Dr. Sartor ran a genetic test on me called Invitae, it showed two mutations that could be hereditary. He made the test available to all my children, one of whom was deemed to have one of the mutations that I have. Both of my boys know to get PSA tests beginning at 40, my daughter was free of mutations, which was great because one of my mutations increases the risk of breast cancer.

Ed

Seal004 profile image
Seal004

A genetic panel is definitely warranted. My father is Chek2 positive which is indicative of prostate, breast, ovarian and colon cancer. It certainly does make a difference regarding early screenings. I have ovarian cancer and my sister breast cancer. I would ask your oncologist for a full genetic bloodwork panel and go from there. Have your nephew search for doctors who will listen and give the tests that are needed. Best of luck.

lowT163 profile image
lowT163 in reply to Seal004

I will stay on him.

EdBar profile image
EdBar in reply to Seal004

I also have a Chek2 mutation, Dr. Sartor told me the frequency of it causing prostate cancer is low however it is still a risk and early testing is recommended for family members who share the mutation.

lowT163 profile image
lowT163 in reply to EdBar

I’ve been to 3 hospitals basically for travel connivence and no one ever mentioned genetic testing. The three are MD Anderson, Mayo Clinic and KU Med.

I’ll ask why at my next round of scans.

EdBar profile image
EdBar in reply to lowT163

I had one genetic test done by Snuffy Myers and two through Dr. Sartor. The second one that Sartor did was through a company called Carris, he was checking for somatic mutations since I’ve been on ADT for so long.

Ed

tsim profile image
tsim

Yes

Mecrispy77 profile image
Mecrispy77

Hello, my Urologist ordered genetic testing, age 43. TP53 gene mutation, LFS. No longer qualify for (new) life insurance. Bullshit!

lowT163 profile image
lowT163 in reply to Mecrispy77

I never bought life insurance. Put your money in a Roth IRA and snub your nose at the insurance companies. Big thing is don’t let prostate cancer get ahold of you. Best way I know of to lose money.

j-o-h-n profile image
j-o-h-n

I guess the GP probably gives himself a DRE every week (and he's an asshole anyway). Tell your nephews to see a good Urologist and get tested NOW and every YEAR. In the family is enough to be vigilant. A word to the wise......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 03/06/2023 10:20 PM EDT

lowT163 profile image
lowT163 in reply to j-o-h-n

I agree. But I can tell you that almost no one I have talked to about this crap listens.

j-o-h-n profile image
j-o-h-n in reply to lowT163

Human "Ostrich burying its head" nature.........only time I knew of "a prostate" is when I was diagnosed. At first I thought the doctor was telling me that I was to begin yoga by lying prostrate on the floor.

Live and Learn..........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/07/2023 5:53 PM EDT

lowT163 profile image
lowT163 in reply to j-o-h-n

same thing got me in trouble. I heard no cancer and went back to work. There is no fear out there like it should be.

RMontana profile image
RMontana

This is the best mapping of genetic testing I have found...see if this helps map out what is available and when it should be considered. TNX

healthunlocked.com/active-s...

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