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An ounce of prevention.

An ounce of prevention.

Posted by ACH2015 on Oct 11, 2017 10:09 am

https://www.thestar.com/life/health_wellness/2017/10/09/saliva-test-for-gene-mutation-saves-lives.html

The above link provides information for a simple saliva test that family members can take to determine if they have a gene mutation specific to breast, ovarian, prostate or pancreatic cancer, if anyone in their family has been diagnosed with these specific cancers.

Preventative measures and or early detection is always the best case scenario.

ACH2015

Re: An ounce of prevention.

Posted by Lacey_adminCCS on Oct 11, 2017 4:51 pm

Thanks for sharing ACH2015‍ smiley

Would anyone consider testing or consider having their loved ones tested? Has anyone had genetic testing?

Interested in your thoughts and experiences...

Re: An ounce of prevention.

Posted by Dielle on Oct 11, 2017 7:44 pm

Wow.  I never thought of my breast cancer being genetic although I have told my daughter to make sure her doctor knows about my diagnosis.

But now I realize that in addition to my breast cancer, my dad had pancreatic cancer and my brother had prostrate cancer.  So in my birth family of 6 people (4 of us kids plus our parents), half has or had these cancers.  Maybe we should consider testing.

Re: An ounce of prevention.

Posted by Belanos on Oct 11, 2017 7:57 pm

Dielle‍ 

It's well known that breast cancer has some genetic components. Angelina Jolie made a big deal of the issue awhile back by having a double masectomy without even having cancer. She had tested positive for the gene responsible and had her breasts removed as a preventative measure. And yes, your family should probably consider getting themselves tested. Ironically in my situation, there was a family history of colon cancer on my father's side which I had taken steps to look into. Yet I ended up getting Lymphoma.

Re: An ounce of prevention.

Posted by Dielle on Oct 11, 2017 8:19 pm

Belanos‍, I was well aware that some breast cancer is due to these gene mutations.  However, that only accounts for a small portion of breast cancer - about 5-10%.  Most women who get breast do not have the genetic mutation and have no family history of it.  I was not aware that pancreatic cancer was also linked ot this gene.  My doctor knows my family history and has not suggested testing or that there might be any links.

I know you probably did not intend this but your response came off as sounding quite condescending.



 

Re: An ounce of prevention.

Posted by Belanos on Oct 11, 2017 8:35 pm

Dielle‍ 

Sorry, that wasn't my intention. I've edited my post to try and make it more acceptable.

Re: An ounce of prevention.

Posted by Dielle on Oct 11, 2017 9:28 pm

Thanks, Belanos‍.  I appreciate that.

 

Re: An ounce of prevention.

Posted by Belanos on Oct 11, 2017 10:08 pm

Dielle‍ 

Unfortunately I have some passive-aggressive tendencies that I have to keep in check when I post online. It probably comes about after spending time on the Yahoo forums. That place is full of trolls and outright ignorant people. I don't go there anymore since I cancelled my account with them.

Re: An ounce of prevention.

Posted by Lchalmers on Oct 12, 2017 8:23 am

I am scheduled for genetic testing as my sister and I both had breast cancer in the past year and there is family history of other cancers.  My oncologist is arranging this for me, unfortunatley there is a very long wait to have it done even thought it is a quick test to get the information they need be it a blood test or saliva test.

This will hopefully help my son and daughter down the road, and my sister also has three girls.

 

Re: An ounce of prevention.

Posted by Minus2 on Oct 12, 2017 8:27 am

Hi everyone, 
I met with my oncologist yesterday and the results of my genetic counselling were available for review; she says I need to set up an appointment with the genetic counsellor to discuss the details, but the good news was that there were no indications my breast cancer had a hereditary basis.  There were a couple of things that need further explanation, but I did have a sigh of relief over the big news.  If I don't have a bad gene, my kids can't have a bad gene and that means all the work to get the testing done was so worth it!
On another note, some information that you may find interesting.
I had posted several weeks ago about getting my kids started on a really solid long term financial plan which included a whole life insurance policy and a critical illness insurance policy.  I used to be a financial planner and I don't think people really understand the importance of having coverage in place when you are young and healthy.  Trying to get it later in life is expensive and sometimes not achievable.  
My son's application for both coverages sailed through.  My daughter on the other hand had to go through some additional questions and a physical exam.  Ultimately, the company did insure her on both policies, but based on family history, they "rated" her critical illness policy.  It means there were no restrictions on which diagnoses are covered, but because of my breast cancer, they consider her to be higher than average risk and her premium is $20 per month higher.  She is 24.  Over her lifetime, the cost of the policy is significantly higher, but given the family history, it was worth it to us to have the financial protection for her despite the increased cost.  The policy provides for a refund of all premiums if she does not have a diagnosis by the age of 65, so there is no loss of money, just a little extra impact on the cash flow.  Similarly, she is a student and needed a student line of credit for school; her application for critical illness coverage through the bank was denied based on family history.
I hate the fact that my diagnosis has any impact on my kids but I feel better knowing we have taken steps to ensure they have options if they ever do have a significant health issue.
Minus2

Re: An ounce of prevention.

Posted by Jimmi on Oct 12, 2017 8:53 am

Lacey_adminCCS‍ I had genetic testing done about a month ago for BRCA1 & BRCA 2 genes. Apparently ovarian & breast cacncer are linked in certain cases. It can take up to 2 months for results. I have a 36 yr old daughter; a 42 yr old son & a granddaughter 6 yrs from both of them. These mutated genes can also put males at higher risk for prostate gland. My daughter & I met with genetic counsellor before testing, and will meet with her once results are in. There are 3 possible results, positive, negative & inconclusive.
only 10% of ovarian cancers are hereditary. I have a family history of various other types of cancers on my maternal side, no ovarian. Counsellor said mine is not "screaming herditary  to her but is whispering".
if I get positive results my children will be tested, then my Sister will get tested & if need be her children.
The children only have a 50% chance of inheriting the gene from parent. 
Ill let you know my outcome. Hoping that it's negative & just bad luck for me.
Jimmi
 

Re: An ounce of prevention.

Posted by Minus2 on Oct 12, 2017 9:21 am

Hi Dielle‍ and Lacey_adminCCS‍ , 
I pushed to have genetic testing done because there is so much cancer on both sides of my family.  When the team first reviewed my history, they believed there was a 5%-10% probability that I carried the BRCA2 gene, which has links to breast, prostate, melanoma, and pancreatic cancers.  The genetics counsellor really zoned in on the family members that had a diagnosis before the age of 50 and on the fact that because my mother and I had no sisters, there was an absence of female health history.  So, for me the testing involved a panel of 30 genes, and now my information is in the database, so as new information is available, my file will be flagged where appropriate.
I really wanted the information for my kids.  In my opinion it's getting harder to access screening procedures if you don't perfectly fit the criteria - it's all about standard of care and statistical probability and that's all linked to fiscal policies.  So, I wanted information in order to help my children advocate for early screening if there was a hereditary link and so they can make lifestyle choices they can live with.  Despite all the strides in treatment, early detection is still a huge factor for successful treatment.
On the other hand, my daughter expressed some concern about living in fear for the rest of her life if the genetic testing had come back positive.  So, it's a bit of a double edged sword.  And not everyone wants to know; my uncle refused to sign the consents for his own pathology.  
If you do pursue the testing, it does take a while.  I started advocating in summer 2016, got the go ahead in December 2016, compiled the family history and sent it in sometime in January 2017 and just had a cursory review of the results yesterday.  For me, it took perseverance and patience - contradictory virtues, I know.
Wishing you well in your reflections and decisions Debbie.  This cancer thing brings us to places and processes never thought of previously.
Minus2

Re: An ounce of prevention.

Posted by on Oct 12, 2017 9:31 am

I had genetic testing done because my paternal aunt had the same kind of cancer as myself...the results were that I am not BRCA1 and BRCA2 positive, but still my female relatives are at a higher risk for cancer because two close relatives had cancer...

Re: An ounce of prevention.

Posted by Beespecial on Oct 12, 2017 3:41 pm

I just had my genetic counselling appointment on October 5th. Fascinating stuff.  In my case, the appointment is really about what risk I run of a second primary cancer or a recurrence.  There is a ton of breast cancer in my family, but my Mother and my Sister both had genetic testing for BRCA1 and BRAC2 and it was negative.  I always that meant I'd be negative too.  But that's not the case -- I could carry the gene.  So they took blood and are doing a panel looking at 16  genetic markers.  Other centres look for more, but McMaster does the 16 most reliable ones. 

They said it would take about 8 weeks. Maybe a little sooner. I signed a consent to have her call me, instead of having to go for another meeting.  If it's positive, there will be much to discuss and consider including tests for others in my family.  No matter what the results are, there will be an assessment of my risk. If it's 25%+ then I would have annual breast MRI's (on my remaining breast) along with mammograms.  If it's 24%- then I only get the mammograms. By early December I should know. 

My sister's risk was less than 25%, so she just has the mammograms. The genetic counsellor suggested that my sister tell her geneticist that there is new information (that her sister, me, has a cancer diagnosis). This might put my sister's risk higher and she could get annual breast MRIs.  
Belinda

Re: An ounce of prevention.

Posted by Minus2 on Oct 13, 2017 4:51 pm

Hi everyone, 
Seems I may have spoken too soon.  I had a call from the genetic counsellor today and she explained the testing results in a little more detail.  I will be getting a letter shortly that outlines our conversation.

They did run a 30 gene panel.  The testing did not identify any genetic mutation variances of known significance.  That is good news.  It did however, identify a variance of unknown significance in the ATM gene, which helps repair DNA, and is linked to breast cancer and pancreatic cancer.  Some studies also indicate links to prostate and stomach cancer - my mother's side of the family has all of them, except the pancreatic.  The unknown part is how big a role, if any, it played in my breast cancer diagnosis.  The "unknown" part also means my family is not eligible for testing through the Cancer Genetics Program.  I will have to check in with the genetic counsellor every 2-3 years to see what new information has been collected and how it affects me and my family.  

Not sure how to feel right now - not all of the cancers linked to this gene have early sceening tests, although they're working on them, so I'm a little bummed out.  When I started the process of genetic testing, I was very focused on helping my daughter access screening for breast health and my son for prostate health.  But with different cancers in the mix, that are more difficult to manage and survive, I feel like I've been knocked flat.  I will pick myself up, but it's going to take some effort.

Minus2

Re: An ounce of prevention.

Posted by KarenBlue on Nov 7, 2018 4:32 pm

Hello Minus2‍ and everyone,

I have been reading with a great deal of interest this discussion on genetic testing. When I initially was diagnosed with breast cancer in November 2017, I did not think there was a possible hereditary connection. You see, my mom is alive and well at 88 with no history of cancer. My four sisters also have had no bouts with cancer. However, a curious thing happened recently. My son did the 23 and Me gene testing and the info he got back included mention that he has one of the BRCA mutations. I mentioned this to my oncologist and he has now put in a request for genetic testing for me. (He also said that these companies can get things wrong.) However, my mother-in-law had breast cancer. My dad, father-in-law, and husband have all had prostate cancer. I knew my son would need to be on the lookout for prostate cancer when he got older, but now I am fearful for my daughters. I find the tough thing about cancer is how much fear and worry it can cause. I have completed my chemo, surgery, and radiation odyssey last week, but cancer has a clever way of still being on my mind :(
P.S. I have really appreciated this community, though I am not a very active contributor. Thank you all.

Re: An ounce of prevention.

Posted by LPPK on Nov 7, 2018 5:03 pm

When I talked with the nurse during my survivorship planning we discussed the possibility of genetic testing. I explained that my mother died of melanoma at age 37, I had one spot of melanoma removed in 2010, and my daughter has had some pre-cancerous moles removed.  Last year after I was diagnosed with breast cancer my dermatologist told me that there is definitely a link between melanoma and breast cancer.  Unfortunately the cancer clinic did not want to get into any testing at that time because I was being discharged from my breast cancer treatment.   I was told to discuss it with my GP and if she felt it a good idea she could send in a request for genetic testing. I will be tackling that topic with my GP at my next appointment.



 

Re: An ounce of prevention.

Posted by Lianne_adminCCS on Nov 7, 2018 5:21 pm

KarenBlue‍ 
I want to congratulate you on completing your chemo, and rad! That little part about it still being on your mind - well that is pretty normal. I am 7.5 yrs post treatment and it still sits on my shoulder and pokes me once in a while.

I was diagnosed with breast cancer in 2010. No other breast cancer in the family though several colon cancers on my dad's side including my dad. So I was watching out for that.  The following year my mom's sister was diagnosed with bc and 3 years later my mom was. Because of what they called a  cluster" of diagnoses, and my diagnosis coming relatively young, it we were given the BRCA 1/2 testing. Thankfully ours was negative so it gives me some peace of mind. We are now looking into testing for other gene mutations that may relate to the colon cancer "clusters".

Keep us posted if you can as you go forward

Lianne

Re: An ounce of prevention.

Posted by ashcon on Nov 7, 2018 5:23 pm

Hi KarenBlue‍ -

Nice to hear from you smiley.

I am glad that your oncologist is put a request in for you for genetics testing.  You'll find that you get booked for genetics counselling first.  In your case they may suggest that your husband also gets tested, if it looks like the any gene mutation may be coming down from his side exclusively or as well as from your side. 

I had genetic testing done last year.  One thing they look at when asking about presence of breast cancer in the family is the ABSENCE of females in the family tree.  This was the case on my father's side of family tree - all males on that side of that family and they all had either prostate or colon cancer - which are in same family as breast cancer.  I also had one uncle with male breast cancer - which really made the case for me to get tested.

As it turns out, I had only one minor genetic mutation of PALB2 gene - and even that was of 'unknown variance' - which means they don't know if that mutation was a factor or not for my breast cancer. 

Your doctor is right about the potential inaccuracy of some of these tests like 23 and Me.  Even the one that tests your saliva - they are definitely shown to be not as accurate as the blood test done by a genetics counsellor. 

Make sure you mention ALL cancers that in the direct bloodline of you and your children when you meet with the counsellor.  They will know which ones to chase down for potential ties to your cancer, or to risks for your children.

Be prepared for a lot of paperwork and getting hold of those family members for history and 'release of information' from the hospitals where those family members were treated.
Also, be prepared for a long wait (e.g. 2-5 months) before you get your genetic test results. 

Good luck and let us know how you make out.

Re: An ounce of prevention.

Posted by KarenBlue on Nov 8, 2018 3:20 pm

Thank you LPPK‍ , Lianne_adminCCS‍ and ashcon‍. It was really great to get your feedback and insights. I feel less alone mulling over all this stuff. Well, off to go deal with the fall clean up outside.
Have a good rest of your day,
Karen

Re: An ounce of prevention.

Posted by Lacey_adminCCS on Nov 8, 2018 3:34 pm

KarenBlue‍ 

Let us know how it goes! It was great to hear from you and hear that you have found the community helpful.

I have never heard of the 23 and me test. How did your son hear about it?

Lacey

Re: An ounce of prevention.

Posted by KarenBlue on Nov 8, 2018 4:53 pm

Hi Lacey_adminCCS‍ ,

23 and Me seems to be interesting to those who want to find out about their ancestors. (My son was curious to see if he had more than British, Irish, and Hungarian ancestry and sure enough we may have some Viking blood too haha.) The company also will check for certain medical traits in your DNA (including the BRCA mutation). From what I understand, it is a simple swab test. I imagine he found out about it in his online travels....