Posted by Jlo on May 17, 2019 11:16 pm
Posted by Kims1961 on May 18, 2019 9:01 am
Posted by Minus2 on May 18, 2019 10:02 am
TammyF and mycrazyjourney ,
I am also in London Ontario and had to strongly advocate for genetic testing which I was ultimately successful in obtaining in the summer of 2017. In my case they detected a VUS (Variance of Unknown Significance) on my ATM gene (necessary for DNA repair), meaning it's something abnormal but they don't fully know what it means yet. My research indicates higher risk for breast, pancreatic, stomach, and prostate cancer - and I found all of those in the last 5 generations of my mother's family when I researched our family tree. My family does not qualify for testing because it is a VUS, but I will check back every couple of years to ensure I have new information as it is available. This information helps inform my survivorship plan - so as an example, when I go in for my next colonoscopy, I will ask them to scope my stomach in addition to my colon, just in case there are polyps forming. Can't do much about the pancreatic worry, unfortunately.
Tammy - you said that there is a law now that insurance companies cannot ask if you have had genetic testing done? That's true, so now they ask if you have ever been referred for genetic testing. Tricky!
Following my diagnosis I made sure our life insurance policies were up to date etc. and we bought life and critical illness policies for our children. At some point, they will qualify for genetic testing and they may not be eligible to buy additional insurance. Insurance companies are not benevolent institutions - they exist only to make a profit and satisfy their shareholders. Long story short, my son breezed through all the prep work for his policies, but my daughter required a medical exam and her critical illness policy was rated - no exclusions, but her premium is higher - all thanks to my diagnosis.
Bgirl ,like you I have not shared the results of my testing with all family - only those that understand my motivation in pursuing testing was to be proactive in managing my health and providing information to my children so they can do the same, if they choose. I have one uncle - diagnosed Stage IV prostate cancer at age 46 - who saw the request for his pathology results as an invasion of his privacy. It's an interesting perspective. Ultimately, I was able to secure the testing without his pathology.
Posted by Bgirl on May 24, 2019 3:40 pm
For those who were tested, did they give you your results on the phone or did you have to go back for another appointment. Clinical genetics called yesterday and wanted to set up an appointment for next Thursday (sigh--more waiting) to go over results. When I looked on the patient portal to make sure I had written the time down correctly, I noticed it noted as 2 appts. One for genetic follow-up cancer and one for Genetics - MD Consult Cancer. Freaking me out a bit. Just trying to see if I'm reading too much into this.
Minus2 I have only shared with those who seemed interested when I casually mentioned testing. When I get the results I am only sharing with those who express a wish for the knowledge. My daughters have life insurance through their work which is maintainable if they leave and the other has insurance privately in lieu of mortgage insurance. So, somewhat covered already if they need to follow-up depending upon the results. The only thing I'm dreading if positive is having to talk to my 84 year old mom who is starting to experience dementia and is very emotional at times. They would want to test her to see if it came from her side or the paternal.
Posted by Jlo on May 24, 2019 9:31 pm
The counsellor shared my results over the phone and said she would send them to my GP and oncologist. I asked for a copy by mail as well. As there was no further followup in my case, I did not return to the hospital in Abbotsford, B.C. I did share my results with family members on my dad's side.
good luck with your appts.
Posted by Bgirl on May 30, 2019 6:30 pm
Posted by Lianne_adminCCS on May 31, 2019 11:50 am
I am so sorry to hear you did not get the news you were hoping for. While I am sure this is very upsetting, at some point down the road, I hope you can see that having this knowledge gives you and your family some power to make the decisions for yourselves going forward.
BC Cancer publishes an excellent booklet on Hereditary Breast and Ovarian Cancer - BRCA genes and I am including it for you here.
There is also a great online resource called FORCE that I think you will find lots of great information and support as well. Keep in mind this is a US website but still very applicable
You may not want to look into these right away but I wanted to give you some tools to have when you are ready.
prairiemom also carries the BRCA1 gene mutation and may be able to offer some insight for you on receiving that news
Has the genetic counselor offered you further appointments to discuss risk for you and your family going forward?
Thinking of you
Posted by Minus2 on Jun 1, 2019 1:14 pm
It's very hard to hear that you carry a mutation with some clearly defined risks and statistical probabilities. When I first advocated to have my testing done, it was all about being able to help my children make informed choices to manage their health, which they have done. Learning about the VUS on the ATM gene was one edge of the double edged sword. The other edge was the probable links to other cancers besides the BC - stomach, pancreatic, and prostate - which I had not considered and can be more difficult to detect. I thought I was prepared to hear the results but the reality was a little different and it really just takes time to let the information settle and get your head wrapped around it.
Thinking of you and your girls.
Posted by Bgirl on Jun 2, 2019 8:55 am
Thanks for the words of encouragement.
I have a category 1 (pathogenic) mutation on the ATM gene and also a category 1 (pathogenic) mutation on the PALB2 gene which is associated with how the BRAC2 works.
Trying to process the info. Can't even start to get my head around the big picture. I have about 12 weeks (4 cycles of Herceptin) left. Thought I was starting to see the light at the end of the tunnel. Started this second diagnosis in March 2018 and felt like I was getting closer to moving on and now this. It seems like the light at the end of the tunnel is a freight speeding the other way.
I have 5 siblings and 3 daughters - will have to start there I guess. My one daughter is only 6 months away from being 30 and will have to make decisions about seeking the counselling sooner as the Ontario High Risk Breast Screening Program starts at 30. Some of my siblings have children in there 30s and one who is 40. Some of this matters more urgently to them. I guess I'm just going to have to peel this back one layer at a time.
After 71/2 years of BC BS I'm just physically and mentally tired. More surgeries for myself ?? - not sure I can even go there right now.
Posted by FunnyBunny on Sep 8, 2019 4:39 am
My mom has been advised to send her initial pathology sample to the US for genetic testing. We are told Canada only tests about 46 but the US tests over 500 genetic mutations. We just found out neither her nor Dad’s benefits will cover any of the expense and so we are paying for it ourselves ($6300 Cdn). Mum’s treatment options are limited. We know the chances of getting a match are only 25% but if we are one of the lucky ones she could be cured. Otherwise we have no options left besides to keep trying different chemo and clinical trials.
Anyone have experience with this?! How long does it take to get results from testing?
Posted by ACH2015 on Sep 8, 2019 8:27 am
I read your post.
The link below is for a clinical trial at Princess Margaret Hospital in Toronto, and it involves collecting samples to determine biomarkers in Gynecological cancers. BTW - Its free if you qualify:
I am also sending you a link to the Canadian Clinical Trials home page - below. Just type in what you want to search in the Find a Trial Box. It will produce a list, sometimes pages long with multiple trials across Canada. If you and your mother were not aware of this avenue, it may open another door for her toward control of the cancer. There are associated risks, and you have to qualify for these trials. Having participated in trials myself, they are an option when there are no known front line treatments left to choose from - or when previously utilized methods have failed to achieve control.
One more link I want to share. Its from the Canadian Cancer Society and talks about clinical trials with good information to hep understand all that goes with them.
Have a chat with your mom about clinical trials, and if she's willing discuss further with her oncology team.
Posted by Elizabeth06 on Sep 8, 2019 8:30 am
Welcome to Cancerconnections. I am sorry to hear about you mom’s cancer and her current circumstances.
I have metastatic breast cancer and had genetic testing completed in the first year after my diagnosis, then again about eighteen months ago. The reason for doing it again was that the science has improved and they can detect many more abnormalities. The results take several months to come back. I was glad to have it done, but, it did not provide any information that would contribute to my treatment.
i also had genomic testing done, as part of a trial, in Ontario, called the OCTANE study. There were samples collected and sent to the states for testing. I think they send 4 or 5 hundred samples each time, from all of the participating hospitals. The cost was covered by the trial/study and savings gained by running so many samples each time. It took about six months beforehand I heard I had a mutation that there are drugs in development to treat.
i believe the study uses the same American group, foundation one, that you are referring to.
my understanding is that Foundation One, testing, costs $5000usd.
this is a link to their site. I believe you can ask for a Canadian, self pay rate that would reduce the cost a bit.
above is a link to the octane study, I believe there is a similar study in BC.
I don’t know what the time frames are like when you send samples as an individual.
best of luck moving forward. Keep us posted.
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