Posted by mycrazyjourney on Feb 27, 2019 8:03 pm
Posted by Elizabeth06 on Feb 27, 2019 8:41 pm
how timely! This is a very recent thread on the subject of genetic testing.
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.
Posted by slf on Mar 1, 2019 3:34 am
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.
Posted by Elizabeth06 on Mar 1, 2019 9:54 pm
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.
Posted by Jlo on Mar 2, 2019 3:42 pm
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
Posted by LauraNFreeman on Mar 3, 2019 6:20 am
Posted by TammyF on Mar 3, 2019 3:59 pm
Posted by Survived99 on Mar 4, 2019 7:16 am
Posted by Elsie13 on Mar 4, 2019 3:55 pm
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.
Posted by prairiemom on Mar 6, 2019 7:56 pm
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.
Posted by mycrazyjourney on Mar 8, 2019 8:40 pm
Posted by prairiemom on Mar 8, 2019 9:58 pm
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.
Posted by mycrazyjourney on Apr 4, 2019 9:53 am
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.
Posted by Lacey_adminCCS on Apr 4, 2019 10:24 am
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,
Posted by Jlo on Apr 4, 2019 7:34 pm
Posted by MPfeif on Apr 22, 2019 10:21 pm
Posted by Bgirl on Apr 25, 2019 3:18 pm
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.
Posted by mycrazyjourney on Apr 26, 2019 1:17 pm
Posted by Bgirl on Apr 26, 2019 2:54 pm
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.