BRCA1 BRCA2 Testing in Canada?? Help Please!!!

Anonymous

BRCA1 BRCA2 Testing in Canada?? Help Please!!!

Anonymous

Hi, I know this is a big topic of discussion but I need to know if and where there is testing for this in Canada....Ontario. How do you get the testing and is it covered by provincial health insurance???

otter

Viv,

How are you doing, a week post-surgery?  I haven't made my way over to the other topics yet, so I'll check there.  I just happened to notice your question about BRCA testing in Canada.

I don't know about Canada, but here in the U.S. there is only one lab that does comprehensive BRCA testing--Myriad Genetic Laboratories, Inc.  I have contact information for them, so if you'd like it, I can pm it to you.  There is a 1-800 number you could call to see if they are approved to test samples from folks in Canada.

As for insurance coverage, even here the coverage appears to depend on the calculated risk that the person being tested will actually have a BRCA mutation.  My surgeon said that my insurance company will probably not pay for the test unless my predicted risk is above 10%.  A genetics counselor will calculate the risk based on family history of cancer.

I hope you are doing OK and making progress!

Hugs,

otter 

snowyday

Where is Beesie, I'm sure she will know, she's so smart, so I'm going to watch for her answer as well. I just thought they did it at the cancer clinic during pathology, show how little I know.

Marian61627

Crazydaisy (Viv) .. I know that I am in the US but I believe it is done in a similar manner so I will explane and then maybe Beesie can confirm.

I asked my primary care doc to refer me to the University near us (it is a cancer center) to a genetic councelor.  The genetic councelor took as much info I had on my family (both my father's and mothers side).  She took that information and loaded it into a computer software that makes a genetic map.  At that time she determined whether I had a strong risk of cancer and made some recommendations.  She recommended (even though all of my mamo, sona's digitals had been negative up to that time) BRCA 1/2 testing (a blood test was done at that facility), a breast MRI and CA 125 blood screening were also recommended.  It took about 4 weeks (maybe three) weeks to get the results of the BRCA back and it was negative (thank God)..

I imagine that your breast surgeon can make the referral if your general practioner is not available for some reason. 

It takes time to get into the Universitys but you have one in Toronto that is a world noted cancer center so you should have no problem.  I think the man I spoke to at Myriad (the research center where my blood was sent) told me that they were the only testers in North America.  I don't know that as a fact, but that may also explain the high price of the testing.  Now that wouldn't apply to you all you have to do is get a doc who is involved with your care to refer you to genetic counseling and they will take care of the testing..

Best

PS are you OK there is a note of frantic in your voice that I haven't noticed before!  How are you doing since your surgery?

In my thoughts!

Marian

otter

Marian, I detected that change, too.  I wonder if Viv has her path report back and the news is unexpected?  Now I'm really worried about her.

otter 

Marian61627

Yeah.. I hope she is doing OK.. this is really such a difficult part of the entire procedure.. the waiting and then if it comes back with something unexpected there is that frantic "what do I do next" and "what about the kids"

I hope she checks in soon!

Best

Beesie

Viv, yes BRCA testing is available and it is covered by OHIP.

The process is very much as Marian described.  Your oncologist should refer you to a genetic counsellor.  The genetic counsellor will do a complete family background and then assess whether your risk level is sufficient to warrant the test.  In Toronto, I think most of the referrals go to Mt. Sinai.  When I was referred there, they sent me a very detailed family history form that I had to complete and send back.  When I went in for my counselling session, the counsellor already had reviewed and assessed all that information. 

If it's judged that you have sufficient risk to consider taking the test, the counsellor will explain the implications of the test, both for you and for your related family members, whether the results turn out to be positive or negative.  Then you get to decide if you want to go ahead or not.  If you decide to go ahead, it's a simple blood test that can be done on the spot. 

The one difference here vs. the U.S. is that it takes a lot longer to get the results.  About 3 - 6 months, usually.  I had already had my mastectomy so the extra wait was fine with me because I wasn't holding off on surgery and I wasn't in a rush to have to make any new decisions, if I tested positive.  I actually found that it was good that the results were going to take that long because it allowed me to completely put it out of my mind.  I think if the wait had only be 4 weeks, I would have been worrying about it constantly. For someone who doesn't want to wait that long, or for someone who is holding off on surgery, there is an option to pay an extra fee out of pocket so that your sample gets to jump the queue.  If I recall, the cost was $250 and it would cut the wait down to 3-4 weeks.  I didn't bother since I wasn't in a rush to know!  As it turned out, although I had sufficient risk to warrant the test both on my mother's side of the family and on my father's side of the family, I tested negative.  The genetic counsellor did tell me that with all the new developments, it might make sense to get tested again in the future.  She said that if I hear about new variants of the BRCA gene that are found, or new BC genes, I should just call up and set up an appointment for a retest. 

Hope that helps.  Let me know if you want to know more about the process or the information that they ask about.

Anonymous

Oh, Sorry I got you all worried. I wanted to get a fast answer for someone who I talked with that's not doing well. The info is good for me too as I will discuss it with my doc in the near future. Still waiting for pathology for me.....sheesh.

Thanks, thanks, thanks!!!!! I know the person got the info!!

Anonymous

Questions: What does BRCA1 And BRCA2 stand for??

What does HER2neu stand for? Also what's it mean if it is neg. or pos.?

If someone is ER- and PR- what might be their HER2 status???

esserbre

Hey Beesie, thanks for that info, I've been trying to find out about that testing in Ontario.  Maybe I will ask my radiation onco as he is from London, a bigger city than Sarnia, might be more into that kind of thing.

otter

Viv,

BRCA = British Radio Car Association, an organization (or "organisation") governing all types of radio-controlled car racing in the UK. [Wikipedia]

Oh.  You meant this?

BRCA1 = acronym that stands for BReast CAncer gene 1

BRCA2 (etc.)

HER2/neu is the gene that encodes the protein HER2. "HER2" and "neu" are actuallly synonyms.  Here's what I found with a google search:

http://encyclopedia.thefreedictionary.com/HER2/neu

"The oncogene neu is so-named because it was derived from a neuroglioblastoma cell line in rat. HER2 is named because it has similar structure to human epidermal growth factor receptor (HER1)."

If a tumor is HER2 "positive", it means the tumor over-expresses the HER2/neu gene and makes too much of the HER2 protein.  Since HER2 is a cellular receptor for a growth factor, having too much of the receptor means the cell will be very sensitive to the growth factor.  Overexpression of HER2 is associated with rapid growth and greater risk of recurrence.  OTOH, since the introduction of Herceptin, HER2 positive tumors can be treated with "targeted therapy".

I don't know if there is any direct association between overexpression of HER2 and whether a tumor is ER and/or PR positive or negative.  There are some statistical associations (e.g., some studies say a tumor that is PR-negative is more likely to be HER2-positive), but I think that's just math at this point.

I'm sorry, I'm being kind of lazy tonight.  I knew all this stuff once, but then I retired.  

otter 

Beesie

Brenda, glad that I was of help.  I looked up genetic testing in Ontario and came up with an interesting webpage.  http://www.oma.org/pcomm/omr/nov/01genetics.htm   About 1/2 way down the page is a section called "Criteria for genetic testing for BRCA1 and BRCA2 in the province of Ontario".  And at the bottom of the page it lists the genetic counselling clinics in Ontario.  This is from 2001 but it's probably still current.

Viv, here is a bit more on the BRCA genetic mutations:  http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs/

My understanding is the same as Otter's with regard to the relationship between ER and PR status and HER2, i.e. that there is no relationship that is confirmed to-date.  Look about 1/2 way down in this article for the part on "Evaluation of ER and HER2 Status (Abstract #179)": http://findarticles.com/p/articles/mi_m0EIN/is_2003_June_2/ai_102663608

Note that HER2 status is not considered relevant for DCIS women and because of this, DCIS is often not tested for HER2 presence (or if it is tested, the results aren't released but possibly are only used for research).  DCIS tends to be HER2+ about twice as often as IDC, and researchers haven't figured out yet why this is.  There also is little understanding of the role and impact of HER2 for DCIS.  With IDC, HER2+ is a sign of aggressiveness, but the same has not been concluded for DCIS.  In fact one study showed an inverse relationship (HER2+ DCIS being less likely to become IDC) but that was one small study only and certainly not something to take to the bank.  http://cebp.aacrjournals.org/cgi/content/full/11/6/587

Anonymous

Wow Beesie...you scored on that first one....I'm sure it probably hasn't changed much but just the type of info I'm looking for.......many thanks again. I need to save and print some of this for furthur reading and to keep on hand.

Otter.....LOL...you crack me up......Thanks for the help and good luck on wednesday!