Hereditary Cancer

Decided to have genetic testing for hereditary cancer. As explained to me yesterday during a "male wellness" appointment, 5 to 10% of all cancers are due to a faulty gene that encourages the disease to grow.

My father died at 67 with colon cancer and prostate cancer. My younger brother died at 57 from prostate cancer. My older sister survived uterine cancer at age 45. I believe my great uncle (father's side of family) died of prostate cancer at 67.

My children, nephews and nieces are all watching me as I deal with PCa. They have strong memories of my brother's suffering and death. They are wondering what they might have to deal with as they get older.

I will have my results in a few weeks and plan to share with my family.

Test is being done by Myriad genetic labs, SaltLake city

Has Anyone had this test? Pros and cons? Is it better if you don't know?

Al

Hey, you might be one of the rare exceptions! Probably not, but why not test?


Well, some people have suggested some reasons why not. First of all, the current state of genetic testing is limited, and the high risk of false-positives and false-negatives. I think this is the most common finding by people having the test: "I got some numbers, but it didn't really tell me anything." Most genetic test do not identify all of the possible mutations that can cause a particular condition, or they have limited predictive value. Because some genetic tests may not provide all the information that families may want, the test may subsequently require difficult decisions without providing full information. This can lead to uncertainties for patients and clinicians.

The other common complaint for people who have a spare $50 to spare and seem to have the test just for the heck of it (versus a couple deciding whether to have children and pass a potentially dangerous hereditary gene on) is: "The test didn't particularly tell me anything that I can do anything about." Is there an intervention that anyone in the family would take in your case, or just more unsubstantiated worry?

Personally, I think the risk for psychological harm in the family is the strongest argument against genetic testing...unless there really is a strong reason to test.


So what are the possible good reasons to test?

• Many cases of an uncommon or rare type of cancer (like kidney cancer) in a family
  
• Cancers occurring at younger ages than usual (like colon cancer in a 20-year old)
  
• More than one type of cancer in a single person
  
• Cancers occurring in both of a pair of organs (both eyes, both kidneys, both breasts)
  
• More than one childhood cancer in a set of siblings

Prostate cancer is a ubiquitous disease. A natural part of aging. 50% of 50-year olds have some detectable prostate cancer. 60% of 60-year olds, 70% of 70-year olds, etc., etc. Despite this ubiquity, many men want to know the obvious yet unanswerable question, "Why me?" If you've got an extra $50 laying around to spend on the test and aren't concerned about any of the negatives, why not go for it! We are all special in our own ways...you might be one of the rare ones!

Post Edited (JackH) : 3/11/2017 8:14:31 AM (GMT-7)

Having had two cancers diagnosed by my mid-50s (probability about 1 in 2000), I decided to have a genetics test. I wanted to inform my children if necessary. I used the US company called Counsyl. (Correct spelling.)

Somewhat to my surprise I tested negative for 36 of the most common disease-causing mutations. I was happy for my children, and at least they know that they are unlikely to have inherited any of these mutations from me.

In other words, my cancers were both 'sporadic', as by far the most cancers are.

That said, my maternal family has had many cancers, including my mother who died of breast cancer.

For interest sake, they tested for these: APC, ATM, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4, CDKN2A, CHEK2, EPCAM, GREM1, MEN1, MLH1, MRE11A, MSH2, MSH6, MUTYH,
NBN, PALB2, PMS2, POLD1, POLE, PTEN, RAD50, RAD51C, RAD51D, RET, SDHA, SDHB, SDHC, SMAD4, STK11, TP53, VHL.

<D

Obviously if cancer runs in your family then cancer is a possibility. Why would you need a medical test to tell you this? The only reason to get a test is if you would be able to do something to prevent it. Cancer genes are turn on by things we put in our body. If we smoke might turn on the lung cancer gene. If we are looking to prevent cancer and any other disease we should not put bad things in our bodies. Good nutrition is the key to disease prevention and the bodies ability to heal itself.

I've been seeing a lot of TV ads about "23andMe" that sounds interesting.

I just spent a little time Googleing it and stopped when I read this article:

23andMe Is Terrifying, but Not for the Reasons the FDA Thinks
/www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-the-reasons-the-fda-thinks/

JackH, JNF, and eat2bwell,

I'm betting he wants tested bc of "... My children, nephews and nieces are all watching me as I deal with PCa. ..."
With his family history of cancer especially PCa, I think it's a good decision.
If he's positive maybe they will consider monitoring themselves. I think it was rotten of you to criticize or disparage his choice to have testing. I'd like to know who made you all arbiters of individual choice.

I think we come here for support and information not criticism and insults.

I thank all (!) for their thoughtful contributions to this somewhat controversial topic.

Myriad "myRisk" Heredity Cancer Test results show that I am not carrying a Clinically Significant Mutation.

This is good news to my children, nephews and Nieces.

Myriad recommended family members be screened earlier and more frequently

Al

Manfred said...
Myriad "myRisk" Heredity Cancer Test results show that I am not carrying a Clinically Significant Mutation.

That's scientifically not correct. Myriad should have written that you are not carrying clinically significant mutations in the genes that they analyzed.

Glad you are happy with the results of your test. Do you have an explanation for all the cancers in your family? I would think they have similar genes.

A Mutation Was Discovered in My PMS2 Gene

I'll try to keep this non-technical and brief. Contact me via PM if you want more details.

Prelims. Per my signature, you'll see that I'm dealing with recurrent/advanced PCa. I was initially treated with Proton Beam at the Hampton Proton Therapy Institue in 2011 and Salvage Cryoablation at the Duke Cancer Center in 2015.

The cryo took care of most of the PCa within the prostate, we subsequently discovered a Gleason 9 lesion external to the prostate and abutting the rectum. While we know there is extra capular metastisis, it's still in the prostate area and does not "appear" to be in the lymph nodes, bones, etc. We are treating with Firmagon and Xtandi.

Now, on to the Genetics topic.

My older brother (4 years older) is also dealing with recurrent PCa and is being treated at MD Anderson. They discovered his recurrence in January 2017.

I notified my MO about my brothers condition and inquired about the possibility of an inherited PCa gene. He told me about the progress being made in that area and gave me a few options for testing. I chose to use the "Color Genomics" spit test for 30 cancer related genes. Per JoJoLA's post, it's quite affordable ($250) which I paid out of pocket.

The entire testing process took about 4 weeks.

We were looking for the PCa mutations, (there are 4 of the 30) and those all came back negative.

However, they uncovered a mutation in the PMS2 gene.

Pathogenic mutations in the PMS2 gene cause Lynch syndrome. This is an inherited condition that increases the risk of developing certain cancers, including colorectal and others.

This result does not mean that you have a diagnosis of cancer or that you will definitely develop cancer in your lifetime. Learn more below.

Your relatives might have inherited the same mutation. Women with a PMS2 mutation have increased chances of developing colorectal, uterine, and ovarian cancer, among others.

The genes below were analyzed, and no pathogenic or likely pathogenic genetic variants
associated with an increased risk of breast, colorectal, melanoma, ovarian, pancreatic, prostate,
stomach, or uterine cancers were identified:

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

Summary and What's in this for me.

They recommend a colonoscopy every 1-2 years. Coincidentally, I had a 5-year colonoscopy in January which showed we pre-cancerous polyp which was removed. We'll go to a 1-year colonoscopy routine.

Also, Color will test children and siblings for $50 each. I have a 29 YO son and 24 YO daughter. Both have been informed. The daughter has ordered the kit and we'll know those results in a few months.

Overall, I'm glad I tested. It's a piece of information which may be useful in the future.

Tony