
I have previously shared that I have triple negative breast cancer (TNBC). This was one of the lovely additions to the wonderful world of “You have Breast Cancer” . As my husband will attest, when I do things, I do them fully…so hey, why not add TNBC into the mix.
On my first meeting with my Oncologist, we discussed the impact of TNBC, the benefits of understanding family history, and the possibility of further genetic screening with the Hereditary Cancer program with BC Cancer. It was a 10 minute discussion that resulted in referral as what she said made sense and there is a great deal to still understand with how I got on this path, and how long it really may be.
What is Hereditary Cancer? Well, very simply it is when there is a mutation in a person’s gene that allows for an increased risk of cancer. This mutation is passed from parent to child, hence the reference to hereditary. The BC Cancer site does an exceptional job at breaking down all of the information related to this topic in a manner that is easily understood (link here).
For me, I am already aware of a family history of cancer on both my parents sides, including breast and colon. Now, this does not mean that I have hereditary cancer. It is important to understand that less than 10% of all cancers are hereditary. However, as I already have the complexity of TNBC, I am leaving nothing to chance at the moment.
Additionally, when I started on this path I began to reach out to cancer survivors in my life. One of these conversations was with a close family friend regarding his own hereditary cancer journey. As he spoke about his path, I found that my need to fully understand cancers genetic role within my family grew. This one conversation clearly connected the dots on what it can look like when there is a genetic mutation and the impact of my time with him was significant. When it comes to a cancer diagnosis, I can not stress the importance of educating yourself.
With regards to the process of getting screened, it is simple. After talking with the doctor, I filled out a two page form in the waiting room that was then completed by my oncologist and forwarded to the Hereditary Cancer program. Within two weeks I received an letter confirming my application and advising that they would be in contact within three months. Three months turned into two weeks and I was meeting with a counselor to discuss not only my cancer, but the history within my family just three short weeks after I had completed the referral. Zippy quick!
The meeting with the counselor was virtual (as is so much now a days). At the start of the conversation, it was all about me; my history, diagnosis, treatment plan, etc. From there, the focus moved to my family, specifically “blood” relatives, those I have a genetic link to. This is where I needed to do a bit of prep work for the appointment as they want details, details, details. Information required included; who has had (or has) cancer and their relationship to me, type of cancer, when were they diagnosed (year), age at diagnosis, whether they passed from cancer (and when). By the end of the discussion, the genetic counselor determined that I checked all the boxes required to support further testing.
Before I move on, I feel it is important to share a few of the factors that supported my decision to move forward with this process.
One question that will be answered through this testing is whether I have a BRCA 1 or BRCA 2 mutation. That sounds pretty daunting doesn’t it? Then again, I am going to assume it is because most of you are still at “What the heck is BRCA?” So, lets take a step back to answer that question, as it will help you understand why this is important to me and my path.
When working properly, these two genes could be called “warrior” genes and they are the ones you want working for you. Their main job is to suppress tumors, their growth and rate of spread. Their primary focus is areas such as the breast and ovaries, however they also keep an eye out in other areas. However, when there is a mutation, the genes go to the dark side and become more of a cancer cheerleader; encouraging the cancer to behave poorly and from this you run an increased risk of things such as breast, ovarian, or other cancers.
If the testing reflects that there is a mutation in these BRCA genes, my surgical options are limited to one; bi-lateral mastectomy and removal of ovaries. Don’t get me wrong, I have other options, none would be recommended by ANY of my doctors, but I have options. For me, the 30 years reminding my husband about his socks is the goal. So there is only ONE option.
Now, if there is no mutations, surgical options are varied and include; mastectomy, bi-lateral mastectomy, lumpectomy, or reduction (which includes removal of the tumor). All of these options have similar rates of return (yes, one of those things that will now be a part of my life) and there is no significant difference in overall survivability.
In addition to the surgical decision, I have two children and a positive result has possible life impact to them. I am also one of four children in my family, and all of them, whether they like it or not, are related by blood. It is important to understand that being positive does NOT mean my children or siblings will be positive. Seriously folks, this is not like Oprah mutation gift giveaways, there is no “You get a positive and You get a positive, You ALL get positives!” With my kids, it is important to understand that they do not genetically test children under 18 unless there is a direct impacts their healthcare outcome, such as they are currently battling cancer and there is a need to look at their genetic history for treatment options. My kids are healthy, strong, and happy..(unless cleaning their rooms) and I am beyond thankful for that. So there is no reason for testing, and when/if THEY DECIDE to get tested, they will understand why they are doing it. My husband and I are adamant that our kids will not live in fear of getting cancer, however we will support them in being aware and informed. My siblings will get a similar discussion, so they can determine next steps for themselves as well as their own children who are all adults.
Okay, so now you know the genetic screening details on the what, the why, it is time for the HOW.
Once you are screened through for the actual genetic testing, there are several steps to follow (remembering that I live in British Columbia).
First, the process for genetic testing is currently not done in British Columbia. It actually is done with a lab in the sunny state of California. Yes, this means that my blood goes on a sunny vacation to the land of movie stars and Mickey Mouse and I get to go to Surrey for chemo…somehow, I think I pulled the short straw on THIS adventure!
At the time of my screening appointment the counselor emailed me my lab requisition to have my blood drawn once she determined I would benefit from testing. Now here is where things got a bit unique.
First, the only lab that could draw the blood was Life Labs (again, in BC). The reason for this is contractual. For me, this is a change as I currently only work with labs associated with the hospital or cancer center due to the turn around time (1-2 hours). So, appointment was booked with Life Labs.
In addition to using the specific lab, the date and time that the blood is drawn is articulated in the instructions. Blood must be drawn before 12:00 noon, Monday thru Wednesday. Additionally, the vials for the blood would be sent to me (with a whack a doodle of documentation to support my blood jetting down south) by Fedex and were to be brought to my appointment to have the blood drawn.
So, on March 29, 2022, I went to my 7:40 am lab appointment at Life Labs with my little Fedex package and had my blood drawn for it’s little DNA adventure. If all went to plan, I should hear something back from the counselor by the middle of May.
Right now, somewhere in a genetic testing lab in California, my blood is going through the genetic gauntlet and the results will have my path through become a bit clearer, more defined. Is my hope that my little genes are pretty and perfect in every way….. OH HECK YEAH! However, I am also prepared to find out that they are pretty and not as perfect as we would like….because no matter what, nothing changes my desire to be stronger in my knowledge, more confident in my decisions, and more aware of how cancer may continue to impact my life.
One of my many incredible cheerleaders shared a quote with me at the start of this journey, “When life puts you in a tough situation, do not say “Why Me”, instead say “Try Me”. This is just another moment on my path through where I will remind the cancer that I am dealing with, I have no intention of loosing this battle….just TRY ME!
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