It’s not cool to patent our genes

Tying into the news circulating about Angelina Jolie’s decision to have a preventative double mastectomy, I thought I might share this video that was sent to me by Robyn Shepard from the American Civil Liberties Union. Now normally I don’t go into this stuff – but the video is light and easy and kinda fun to watch. Also, it is on a subject that needs to be noticed: creating patents on our genes.

Angelina urged women today in her article, “My Medical Choice” to get tested for a BRCA mutation if possible – except many women won’t get tested because it is NOT possible. Why? Because it’s really damn expensive. One company has the patent, and so the research cannot extend beyond and it will remain damn expensive to test. Unless . . . unless that patent gets kicked out, and we’ll see what happens in the coming weeks.

But why go on explaining when You Tube can do it so much better? Here’s the video!

BRCA genetic testing result

Well we have arrived, it is the end of another week. And this week was particularly interesting not only for having done some volunteering, seeing my (i.e. Facing Cancer Together’s) PSA advertisement hit the electronic news stands – see page 31 for me and my very white teeth, or trying to arrange a photo shoot (an attempt to describe my current state of hair may not have been so clear, as they kept asking me to bring along my wig), but also because this is the week of my BRCA results.

Genetic testing has been done. And I’ll get straight to the results, then talk about their meaning. Basically – for the two BRCA genes where they have identified a known mutation linked to high probabilities of cancer – I am A-Okay! No mutation. Everything works tick-a-dee-boo.

WooooHooo!!!

(Insert here the happy dance that Mom, Dad, Zsolt and I did this afternoon after sharing the news. Dad cranked up Depeche Mode’s Question of Time and made us all dance around the kitchen in celebration. And you are welcome do dance as well, if you’d like.)

So while the mystery of ‘why did you get cancer’ remains unsolved, I’ve nevertheless been spared this additional weight in my journey. What that means is I am lucky, very lucky, to not have to consider removing my ovaries and uterus due to high risk . . . and my left breast is also giving a sigh of relief.

None of this means I cannot be vigilant – checks, scans, tests must all be done regularly. After all, I did have cancer, and yeah, that doctor in the UK quoted me at fifty percent of a pizza . . .so yes, I need to remain on guard.

But I guess my chances of developing a second cancer are not drastically high. The genetic consultant did this lovely test for me where she calculated the likelihood of my developing a second cancer . . . she arrived at a life-time risk of 16%. But that is when I’m eighty. Right now, here in my thirties, it’s like from less than zero to one percent.  

They did, however, find a bizzaro mutation on my BRCA1 gene that cannot be identified. Generally speaking, they feel it’s not pathogenic (i.e. not cancer causing) but they cannot be positive. This means that every three or five years, I’m meant to call into the clinic and check to see whether that particularly (currently mystery) mutation  has been linked to cancer. Hopefully it becomes confirm as ‘not a bad thing’ as the gene is further investigated.

Honestly, I am thankful to not be identified as having hereditary breast cancer. I am thankful for myself, and my body/baby related choices, but also for my mother, my cousins, my family, and – hopefully – my future children. I am very, very thankful.

People who are diagnosed with the messed up BRCA genes live incredible lives beyond cancer (or even without cancer!) – think about Terri from a Fresh Chapter, for instance. But nevertheless that’s a heavy slice of knowledge about a body that could potentially turn on you. (Of course this is the case for everyone, not to be too ‘doom and gloom’, but imagine having a doctor say, “there’s a 80% chance you’ll get cancer if you don’t remove those breasts.) I cannot speak for their journeys, but I do know they are journeying despite a certain monkey on the back, and that in itself is hugely admirable.

Anyhow, today was a relief and I am thankful, very thankful. It’s such good news . . . I don’t want to boast, but it’s such very, very good news.

And for today, that is all I’ll write about that.

BRCA testing and genetics

Sooo…today I did two things. One: tobogganed behind the house and slide into the school wall several times. (Does that make sense? There’s a school behind my house at the bottom of a hill. We slid down the hill. We slid into the school’s brick wall – our sleds were just that fast.) Two: went to the CHEO hospital in Ottawa and had a visit with a genetic consultant.

Let me tell you how it went.

Having braved the Canadian winter morning and arrived at the hospital, we headed up to level three and checked in. Apparently there was some blip with my health card, I have no idea what was wrong, but as the receptionist frowned at the screen I waited patiently. In my opinion when things go wrong, so long as I know I’m in the right, there’s really no reason to worry.

Eventually she fixed the problem. Something about the number being entered improperly.  And we were escorted into a small office.  In came the genetics consultant – a very pretty woman about my age, and so we had our meeting.

Q) She asked me who my doctor was and why they referred me.

A) My doctor is Dr Canada, and he referred me because he reckons I ought to be tested (see my Queen Victoria connection for the reason why).

Q) And having had no history of cancer in my family, why do I want to get tested?

A) So I know. Once I know, I will know. I get why people delay getting tested for the BRCA mutation when they’ve had it in their family . . . say you are told you have it, then what? Then you need to make some huge decisions. Personally, I’m in absolutely no rush to cut off any more body parts, but nevertheless, knowing one way or the other would be useful. I guess.

Q) Did I study biology?

A) Yeah . . . in highschool.

Zsolt was with me, holding my hand. He had also studied biology in high school. Therefore, everything seemed to make sense as the lovely consultant took out a binder and gave us a page-by-page presentation on how cells have chromosomes, and those chromosomes have two bits (like shoelaces have two bits that tie together) that spell out who we are and sometimes those genes can have a mutation. The more mutations, the worse off the cell . . . worse off, as in, cancerous.

Did you know that the BRCA gene is a GOOD thing? It PREVENTS tumours? And here I was thinking it was a bad old gene that caused a lotta trouble. Nope. Not at all. It’s when both dangly bits in the gene have that bad mutation (effectively stopping BRCA from killing weird cells) that things become a lot more risky.

Q) And have you considered the implications of this test? On your well-being, your treatment options, your life insurance [by the by, my life insurance is essentially shot – except I may already have some thanks to Mom and Dad – but otherwise ticking that box of ‘cancer’ on an application isn’t going to get me anywhere too quick. Mind you, the consultant did say that if I get this test and it comes back negative for the mutation, there are some Canadian life insurance companies that will take that into consideration. ]

A) Yes I have. (Well, kinda.) Please give me the test.

Well heck, like I said in a previous post – what am I going to do? Having already gotten sick once, I’d be crazy not to investigate further. And my well-being has already been challenged. Fact is things are as they are; knowing or not knowing isn’t going to change the way things are. Therefore, I choose to know.

Maybe that’s why Eve ate her juicy Red Delicious. She figured, hey, what’s the harm? And then – BAM – kicked outta paradise!

Ignorance is bliss to a large degree. Not knowing I had cancer was easier than knowing. But it certainly didn’t do me any favours. Sometimes (rarely) I imagine what it would have been like to have found my bump earlier. Would I still have a right breast? Would I have needed months of chemotherapy? Anyhow. I want to know – regardless of the possible difficult decisions that may or may not follow.

I have decided. Give me the test. I want to know.

(And in four months I’ll get the results. Talk about building the suspense.)

(OH! And good news for Zsolt and I, the test is covered by OHIP because I’m absurdly young for this disease. My ‘freak of nature’ status has worked in my favour this time. Fantastic.)

(One final thought. Please keep your fingers crossed that result come back negative: nothing found. I’d rather still wonder, “why the heck did I get cancer,” than know a BRCA mutation was at the root. Much rather.)