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Genetic counseling

Genetic counseling

Posted by mycrazyjourney on Feb 27, 2019 8:03 pm

I just received a letter from the Cancer Genetic Clinic saying that I was referred for genetic counseling and consideration of genetic testing. I have to attend an information session on April 3, would love to know if anyone has attend these sessions and any information would be wonderful. Thanks Therese

Re: Genetic counseling

Posted by Elizabeth06 on Feb 27, 2019 8:41 pm

Hello mycrazyjourney‍ ,
how timely!  This is a very recent thread on the subject of genetic testing.
https://cancerconnection.ca/discussions/viewtopic/39/60919?post_id=290575#p290575
I think it is important to have as much knowledge as possible, and my experience with genetic testing/counselling helped me to feel better informed.  I hope it is a positive for you as well.
If you have any questions, I’m sure anyone who responded to the thread would answer.

Re: Genetic counseling

Posted by mycrazyjourney on Feb 28, 2019 9:47 am

Thank you Elizabeth for all the great information, I am excited to find out what they can tell me about my family’s history of cancer and if I can pass any info on to my family, that would be great, good or bad.

Re: Genetic counseling

Posted by slf on Mar 1, 2019 3:34 am

mycrazyjourney‍ 
I was diagnosed with breast cancer in 2016 and had a double mastectomy, chemo and radiation.
I met with a Genetic Counselor with the BC Cancer Agency after a wait of 14 months for my appointment. She told me there are only 3 counselors in BC, hence the wait.
My sister died of breast cancer in 2016, so it was important to me to get tested for information for my children and my siblings.
I did get tested, but was required to pay $250.00 USD for the test. I didn't qualify for the test to be covered by BCCA since there were only 2 of us in my family with confirmed breast cancer, and in order for the cost to be covered there needed to be 3 people in my family with breast cancer.
It turned out that I don't have the BRAC1 & BRAC2 genes, so that was very good news. I was tested for a total of 46 different genes.
The test was worth the money because it brings me peace of mind knowing I don't carry the genes and that I didn't pass them on to my kids.
Shari
 

Re: Genetic counseling

Posted by mycrazyjourney on Mar 1, 2019 9:26 am

Shari, thank you for sharing your experience, I’m happy that you were given great results. If there is a small fee to find out useful information I’m all for it. Thanks again Therese

Re: Genetic counseling

Posted by ConnieLee on Mar 1, 2019 1:33 pm

Iis there genetic testing for other kinds of cancer.

Re: Genetic counseling

Posted by Elizabeth06 on Mar 1, 2019 9:54 pm

Hi ConnieLee‍ 
I believe there is genetic testing available to anyone with several family members with the same thpe of cancer, or cancers that they know are linked.  So, either siblings, or more extended family members, parents, aunts uncles, grandparents.  
Gather as much family history as you can and then ask your oncologist or family doctor for a referral.
 

Re: Genetic counseling

Posted by ConnieLee on Mar 2, 2019 9:30 am

Awww..thank you very much..I will..great info

Re: Genetic counseling

Posted by Jlo on Mar 2, 2019 3:42 pm

Hi Connie Lee:

yes, there is genetic counselling for other cancers.  My aunt had uterine cancer same as I did, and so did my second cousin.  My dad had colon and kidney cancer while on my mom's side there is a variety of cancers (breast, leukemia, colon and lung cancer).  There is a wait list in BC for genetic counselling  of 12-18 months.  I am getting close to getting a call so will share more once I have my appointment.  Joan

Re: Genetic counseling

Posted by LauraNFreeman on Mar 3, 2019 6:20 am

Waiting for my call here, in BC, too.  It's been a year since I received the letter about the 12-18 month waitlist.  Fourth generation  colon cancer for me, and eager to get some info because I have four children to think about.  I was diagnosed Stage 4 at 41, I want them to be screened much younger, and confirming it's genetic should help them navigate the murkiness that was my delayed diagnosis.  Thanks for this thread, it's a good reminder to be the "squeaky wheel," right? :)

Re: Genetic counseling

Posted by TammyF on Mar 3, 2019 3:59 pm

My surgical oncologist referred me in June 2018, did the counseling and the testing Feb 2019, so much shorter wait times here in London Ontario.  Knowledge is power! I have a history of breast cancer (mom diagnosed @39) myself last year @51.  Sister pancreatic cancer @40, so I qualified for the testing and it is free in Ontario.  In Ontario, 2 primary diagnosis of the same cancer in immediate family members under the age of 60 diagnosed qualifies.  They told me that breast, ovarian, pancreatic, prostate and a few others are linked to BRACA 1 & 2.  So, if my breast cancer tested positive than my son’s risk of prostate, etc is increased.   They can test for 33 gene mutations now, but depending on the extended family history they recommend what amount makes sense.  Why “know” if you can do anything proactively.  The genetitis told me “we have learned the hard way, it does make sense to test everyone for all 33”.   I am being tested for 27 different gene mutations.    It’s amazing what they can do know.    Canada passed a law last year that Insurance Companies can no longer ask if you had gene testing on their Insurance applications.    Good luck!

Re: Genetic counseling

Posted by Survived99 on Mar 4, 2019 7:16 am

I received genetic testing after my second cancer. The oncologist mentioned it to me as I was being treated and it was scheduled for after the treatment. I had BRCA 1/2 testing in 2001 and the testing is more advanced now. The older testing had a lot of false negatives. I'm not sure exactly how I qualified, whether it was the second cancer or my family history. In the end I tested negative to all the 60 or so genes that they tested.  

Re: Genetic counseling

Posted by Elsie13 on Mar 4, 2019 3:55 pm

Hello LauraNFreeman‍ .  Glad you have found cancerconnection. 
     Would you like to tell your story?  For example, did you have surgery, chemo, radiation and what's happening now? You could, for instance, go to the colorectal discussion:                                          https://cancerconnection.ca/discussions/viewcategory/64   and start a new thread for your story, if you like. 

Re: Genetic counseling

Posted by prairiemom on Mar 6, 2019 7:56 pm

Hi!!

I'm in Alberta, and was referred for genetic counselling by my oncologist in the fall of 2015, after I was diagnosed with Triple Negative Breast cancer at the age of 44. I don't know for sure, I have to try and get hold of the clinic again, but I think I was tested just for the BRCA gene mutations, so that I could opt for a double mastectomy and skip radiation depending on the results (this all happened while I was going through chemo, so it was all really time sensitive). 

We were able to speed the process up as I had emailed back and forth with the genetics clinic to see what info they would need from me prior to doing any testing, and they emailed me the form that I would need to complete. I had to gather info on my immediate family, plus my grandparents. Plus give any info that I had on any relatives that had been diagnosed with cancer, and any known mutations in the family. It was hard to get some of the info, as I'm here in Canada with my husband and kids, and all my family live back in England. And in my parents' generation, no one ever talked about their illnesses, at least no one with an actual serious illness - my hypochondriac cousin on the other hand, couldn't shut her up, lol. So I filled in what I could. I'm the 10th person in my family to be diagnosed, one of my mum's side, the rest on my Dad's. That's just the "blood" family, there are at least 2 others that married into our family, llike my late sister in law, who passed away the year before I was diagnosed. I'm the sole survivor too, it's scary, especially not knowing the real details on most of them, and how aggressive treatments were, what stage at diagnosis etc. 

Anyhoo, in terms of appointments, me and my husband met with the geneticist for counselling, we discussed what my actual diagnosis was, and the info I had given on the form, then she showed us various charts and diagrams with what some connections and risks were for genetic mutations, and what the implications were. Both she and my oncologist were pretty sure that I would turn out to have a BRCA mutation (to the point my oncologist was ready to have me re-tested if it came back negative). Then I was asked if I wanted to go ahead and have the testing done. Scary moment, right, do i really want to know, or is ignorance bliss? And then there's the potential for life insurance implications, although i think that is improving somewhat. 

I said that I wanted to be tested. You get a requisition for bloodwork, it's one tube of blood. I think you can only get the bloodwork done at specific places though, my genetics appointment was at the U of A hospital, and they do the test there, so we went downstairs and had it done right away. Mine was expedited, which makes me again wonder if they just specifically looked for BRCA. 

2 weeks later, I got a phonecall from the genetic counsellor. My Dad didn't only pass along his early age white hair, sadly. He was a carrier of the BRCA1 mutation, and i fell into that small percentage of people that got hereditary breast cancer. The week after my final chemo cycle was done, I had a double mastectomy (I;d already had a lumpectomy and lympth nodes removed prior to chemo), and then 3 months later had a complete hysterectomy, to try and better my odds of both a breast cancer recurrence and ovarian cancer. My odds will never be zero, but they are better than they were. 

My kids were 9 & 7 when I was diagnosed, and are now 13 & 11. They know I had cancer, and needed further surgeries, but don't know about the BRCA1 yet. They cannot be tested until they are 18, and it will be their decision, not mine, to get tested or not. My daughter especially is a worrier, still worries about practically every medical appointment I have, and I know that she would fixate on the 50% chance that she does have the gene, not the 50% that she doesn't. There's time enough to freak them out again. As it is, they will start mammograms and screening for my daughter in her 30s if not before (they start 10 years before my age at diagnosis). 

Hope this was somewhat helpful, amongst the story-telling, lol. 

Re: Genetic counseling

Posted by mycrazyjourney on Mar 8, 2019 8:40 pm

Prairiemom, thank you for your sharing with us all. I was also given the same forms to fill in last July, 1 month after my mastectomy. I have a strong family history of cancer, 5 out of 11 children have cancer. I have triple positive breast cancer and so does my sister. I just received a letter for genetic testing April 3rd, since I first filled in the forms about family history I found out that more aunts and uncles have had cancer. I am a little nervous that my results will be positive for braca1 or braca2 or any other gene mutations. Does your oncologist talk about a mastectomy on remaining breast? Is that suggested if I have any mutations?? I’m crazy worried that my kids will be affected.

Re: Genetic counseling

Posted by prairiemom on Mar 8, 2019 9:58 pm

Hey,  when my oncologist told me that he wanted to refer me for genetic testing, he brought up the subject then of additional surgeries, should I turn out to have a mutation. And said that he would recommend that I have a double mastectomy and a complete hysterectomy, along with my ovaries and tubes being removed. It was a lot to take in for sure. And it's what ended up happening with me. We knew we were done having children, and I just wanted to reduce my risk as much as possible. It's a big decision to make for sure, I think for me, having already been diagnosed with cancer maybe the decision was easier because I knew that if I could cut down my risk of going through this again, it made the decision easier. 

You might have seen this already, but I'll share this link here for some other info re surgeries / screening etc. The surgeries do not remove our risk completely, as the fact sheet says, but it does bring down the risks a lot.
I worry a lot about my kids too, and my nieces and nephews, and try to reassure myself that new research is being done all the time, and hopefully with that will come better treatments, knowledge etc. Sometimes it helps. 
https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q10

 

Re: Genetic counseling

Posted by Diana BC on Mar 12, 2019 9:05 am

Thanks for this thread.  It’s on my list of questions for my oncologist.   I think for me, I would rather know and then make the decision about additional surgeries.

I’m glad that i didn’t have children to worry about.

Re: Genetic counseling

Posted by mycrazyjourney on Apr 4, 2019 9:53 am

My husband and I meet with the genetics counsellor  yesterday, the session went well very informative. I qualified for genetic testing, to qualify you have to have 3 or more family members with the same type of cancer. My family had 7, so I will be tested for 23 out of 30 genes because as the counsellor explained the other 7 genes would come back non conclusive meaning that certain cancer were not present in the family, eg prostate, bladder ect. She also said that they will be giving me letters stating that a person in the family has had genetic testing done and that my siblings qualify for testing, all covered at no cost. These I will pass out to my brothers and sisters and let them decide, all the hard work has been done they just have to sign a form to go ahead. The results will take 6-8 weeks or sooner. I asked about BRCA1 and 2, she said if I have these mutations she will refer me to a surgeon and a gynecologist to talk about further treatment, meaning  
hysterectomy,ovaries and tubes removed and a mastectomy.... all to be discussed with oncologist, one step at a time and a very personal choice to make. 

Re: Genetic counseling

Posted by Lacey_adminCCS on Apr 4, 2019 10:24 am

mycrazyjourney‍ 

Thanks for sharing about the process and your experience with genetic counseling- so helpful!

I hope the information you get back helps make your personal choices easier. I hope your siblings also benefit from the information, it is nice to know that you helped them in that way.

Please keep us posted,
Lacey

Re: Genetic counseling

Posted by Jlo on Apr 4, 2019 7:34 pm

Further to my last post on genetic counselling, I did have my appointment this week in Abbotsford, BC.   There are only 3 genetic counsellors in B.C., - 1 in Vancouver, 1 in Victoria and 1 in Abbotsford, which explains the wait times.  I was very impressed with the counsellor.  I was advised I would wait 12-18 months,  and it has been 18 months.  There is a history of uterine cancer in my family, my aunt and my second cousin, and my dad had colon cancer at age 45.  While there are cancers as well on my mom's side, the testing is being  focused on my dad's side.  His cancer was so long ago, the cancer agency was unable to get his records from 1960 which didn't surprise me.  I am being tested on 17 genes, so depending on the outcome, this will help other members of my family.  Interestingly enough, my pathology testing after surgery came back negative for genetic cancer.  I donated 15 ml of blood - 3 vials and the results will be available in 10-12 weeks.  They will be posted on my ehealth account and the counsellor will review them with me and provide follow up for me and my family.  

joan

Re: Genetic counseling

Posted by Lacey_adminCCS on Apr 11, 2019 11:06 am

Thanks for the update Jlo‍ 

Please let us know how it goes,
Lacey

Genetic Test Results Inconclusive

Posted by MPfeif on Apr 22, 2019 10:21 pm

Hi. I hope this is the right thread. I am wondering if there is anyone else out there that had genetic testing done through saliva test and ended up with a variant that was didn’t provide answers. I am adopted so I paid for the test myself. I do know my father had a daughter who had bc at age 25. Anyone I told that to when asked if family history said it doesn’t matter about the fathers side. I have since been told by a genetic counselor this is sooo not true and I should have qualified. I have had bc, a single mastectomy with Diep reconstruction, chemo, radiation and now hormone therapy. I am awaiting a hysterectomy. I was so overwhelmed in the beginning and did not know I had the right to say I am having a double mastectomy. The surgeon told me she doesn’t like to take healthy body parts. I knew nothing about genetics and like I said the fact it was my dad’s side made the surgeon not interested in family history. Also being adopted I am missing a large chunk of family history. I don’t know why they wouldnt err on the side of caution and guide me different. I didn’t even know a thing about bc or genetics to make a sound and informed decision. So now I live with deep regret. I wished I had a double. I am awaiting some guidance about this unknown. Is there anyone else out there that had a genetic test that didn’t tell you one way or another whether they were positive or negative for the gene? 
~Michelle

Re: Genetic counseling

Posted by Bgirl on Apr 25, 2019 3:18 pm

I am in Ontario.  They have rules about who qualifies for free testing referral for cancer.  You can easily google to find the referral criteria, if you feel that you might qualify and your doctor hasn't suggested it.  One of the criteria is being diagnosed with bilateral breast cancer.  At my initial consults in May of 2018 it was mentioned, but really wasn't followed up on and I was just too busy "getting to the other side" of the primary treatments.  My daughter turned 29 in January and as I was only 46 the first time (Oct 2011) it was starting to be a real question.  So, I brought it up and my MO said that it could be done and I automatically qualify for the consult and testing if I decided to do it..

It took about 8 weeks for the appointment.  They asked questions about parents, siblings, aunts & uncles and first cousins on both sides (half your DNA comes from each parent).  The appointment included counselling on the pros and cons of being tested and the limitations of the tests and the possible results.  I decided to proceed and gave a blood sample that day.  As the testing is shipped to the US, it takes about 6-8 weeks for results.  As it has only been 4 weeks, I'm still waiting.  They will set up another appointment to discuss the results when they arrive.  I am being tested for the 23 gene breast/ovarian panel.  A few of these genes overlap with other cancers too.

A couple of pointers.  My MO strongly discouraged the online tests.  The hospital has a privacy agreement that my DNA is only for this test and will be shared with no one else.  If you look at the fine print of some of the online test you may be surprised.  Also, some of the online tests only look for things specific to certain ancestry (ie Jewish).  Also, this is very significant, powerful information and counselling is an important part of the process.  Why I'm sure the wait some places - not just sending out a blood sample.  I also asked family members before the consult if they wanted to know if I went ahead with the testing.  If they didn't, I haven't told them whether I did the testing and will be cautious in sharing results.  Just because I want to know, doesn't give me the right to burden others with information they are not ready for and possibly force them to make decisions about testing etc. if I am positive.

Fingers crossed.  As always, waiting for results is hard.

Re: Genetic counseling

Posted by mycrazyjourney on Apr 26, 2019 1:17 pm

Bgirl‍  I went for genetic testing about 1 month ago, I was not aware that the testing was done in the U.S... My blood test was done at Victoria Hospital, London Ontario, at the Medical Genetics Program of Southwestern Ontario. I was not told that my blood would be tested in the States, interesting... thanks for the info, good luck with your result

Re: Genetic counseling

Posted by Bgirl on Apr 26, 2019 2:54 pm

mycrazyjourney‍   I guess we are on the same waiting game.  Good luck to you too.  I had my blood drawn at Lakeridge Health Oshawa and my counselling through the Clinical Genetics department there.

MPfeif‍  - with the blood tests they said result could be a known mutation with significance (of varying degrees) or a variant of unknown significance (meaning something off in the sequencing, but currently no correlation to a specific cancer).  OR hopefully no mutations.  Not sure if that is what you meant.  Your result may mean that you don't have a correlation to a mutation that is known to specifically predispose you to a specific cancer.  Probably better than testing positive.  You really should speak to your family doctor and see if you qualify for a referral to a genetics counselor.  They are there to help you make sense of the tests.