BRCA Testing - Part 1

I had my consult a few weeks back with the geneticist. It was super interesting, at least to me. We went over my family tree and she said although there is no real obvious evidence of a BRCA mutation, I also have a very small family with not a lot of ladies, which makes it harder to definitely rule something like that out. She also said that getting breast cancer anytime before 35 is a HUGE RED FLAG in geneticist land. So they've opted to test my blood.

The first stage is looking for the BRCA I or II mutation. If I don't have that, they will ask the Government of Ontario for special permission to have my blood sent to the US, where they will test it for all of the other genetic mutations they know about (but know much less about).

If I am positive for any BRCA mutation, then one of my parents will have to be tested, so we know which line of the family carries the mutation (and who I can hold responsible for this!) and anyone affected on that line will have the choice to be tested. I find it fascinating to know all the stuff we've managed to learn about the human body and the immense amount of stuff we still don't know.

If I am positive, they said I can still keep my boobs. That one is up to me. I think I will likely lop them off if I am, but we'll cross that bridge when we get to it. Removing the boobs means a significant drop in annual testing. If I keep them, it's mammograms every 6 months and yearly breast MRIs. Testing times are stressful, so it would be nice to avoid them. If I am positive, they also strongly recommend going the way of the Jolie and tossing out those pesky ovaries. I can apparently wait until my 40s to do that but I have questions about that, mostly because I'm not so secure in waiting when my breast cancer decided to show up well before anyone is even thinking it's a possibility. Could my ovaries pull that same crap?

I can see how this would be scary if you hadn't already had cancer. The stats for the likelihood of getting breast and/or ovarian cancer if you have these genes are staggering. Perhaps as high as 85% for breast cancer and 60% for ovarian. Scary stuff! Having already had one of these diseases I'm less worried. Though she did explain the mutation, and the mechanism by which it makes your odds of getting cancer higher, and that part was still scary - even for someone who's already been there. It makes it sounds like your genes are just a ticking time bomb. And the thing about genes is, you're sort of stuck with them.

Anywhoosters (that is a part of my vocabulary now, thanks to a co-worker), now I'm back in the waiting game. Apparently results should be in in about 3 months. But even if they come back negative, there is more testing to be done. So I guess this is just the beginning.

Ways in which I might be like Angelina Jolie...

1. I have a very attractive husband (but he's no Brad Pitt).

2. I have run around the temples of Angor Wat (though I was not shooting Tomb Raider).

3. I have five tattoos (she probably has more, and only one of mine is non-cancer related).

4. I'm beloved the world over (at least those who know me around the world, a smaller number to be sure).

5. I might have the BCRA gene. She definitely does.


A letter I've been waiting quite awhile for finally arrived in the mail this week. After being referred for genetic testing back on September 3, 2013 I've finally made it to the top of the pile. Yep, I get to find out soon(ish) if I'm a mutant. I don't have an actual appointment until May but I did get to fill out a questionnaire that was several pages long and all about every one in my family who has had cancer.

Turns out there are a few. Especially in my maternal grandmother's family. But no breast cancer. I am the lucky number one on that front.

Actually, I don't really think I have the BCRA gene. I think I'm just unlucky. But other female members of my family can't be tested for the gene until I have been and it's been confirmed that I am indeed a carrier. And as you will recall, I am in the "knowing is better" school of thought. If I do have the gene, I'm inclined to think the mutation starts with me, though I must also acknowledge I am not a geneticist. I don't think Bio 311 - Genetics qualifies me to make any such judgements.

I'm not worried about the results because I've already lived through breast cancer. It would suck more for my sister, mom, aunt, and niece who would then all likely have to be tested. If I am a BRCA carrier I may consider a prophylactic double mastectomy and maybe even an oophorectomy, though that one seems super crappy since you basically go in to immediate menopause. But still better than ovarian cancer. However, I'm not worrying about any of this until I have an actual confirmation, which will apparently come about 8-9 months after my consult. It's very unlike me to not worry, so a round of applause if you will.

If you're keeping track, I will know my BRCA status approximately 2.5 years after the initial request was made to have me tested. Which is really the thing I'm most appalled by. Not that I may be carrying a potentially deadly mutation, but that it will have taken me 2.5 years to find out IF I'm carrying a potentially deadly mutation. And people wonder why I have so little faith in the Canadian medical system (which I was once a staunch defender of).

Self-relfection

Interesting fact: it has been so long since I updated this blog that it took me awhile to actually figure out how to draft a new post. Perhaps I should be more diligent about writing. But that requires effort....

Anyway, it's December. Which is just mind blowing, since it has been seven months since last I wrote. I remember hearing that time just speeds up as you age. I can't understand how it could possibly get faster than this! Either way, it's been awhile. Which is basically the sentence you will find at the start of every post I've written for the past two years.

In terms of my ongoing cancer-ness I've got two things to talk about. Let's jump right in, shall we.

1) I might be "Debbie Downer"

While I don't write often about cancer, I still talk about it often. Maybe too much, if you ask the people in my life that have to hear about it. I just can't help myself. I don't want to be that person who is like "When I did chemo..." or "After cancer..." but I find it creeps in to conversation a lot. Perhaps it is because it wasn't all that long ago. Or maybe its because I'm still in treatment, though it is only a pill a day. I think it might be because cancer is really scary and I'm still learning to process it.

It's probably that last one.

Which sort of leads to number 2.

2) I'm going to therapy, guys!

Yep, I've finally said "I'm sick of being a worry-wart. I'd like to change that." I've also said "Is there a pill for that?" which it turns out, there is. So I'm on that pill. Hopefully not forever, but for now. Since I hope not to be on the pill forever, I'm also meeting with a therapist to try and work through my anxiety.

Now, I've always been an anxious person. I know, I seem so calm and collected (maybe?) but I'm not. I worry, obsessively, about many things. People I love dying is one. Since 2011, having cancer kill me is another. Also, "did I leave the hair straightener on?" Ugh, that one.

Initially I though it was just the cancer diagnoses that had made me into a crazy worrier but after about 10 seconds of reflection I was forced to admit that basically my whole life has been a study in anxiety. Now, I'm sure I'll never be as casual and un-worried as the calmer people in my life, but I'm looking to move more in the "chill-lady" direction on the anxiety scale. So I meet semi-regularly with a psychiatry resident who is based out of the hospital in their pyscho-social oncology program and we talk about how much I worry, and how I channel all of my other emotions into worry instead of just dealing with sadness or anger or whatever, and how I'm a control freak (I'm paraphrasing here) who also doesn't want to make any decisions. It's basically the most unpleasant hour of my week. I cry. It's awkward, with prolonged periods of seriously weird eye contact but I've decided this is the journey. Personal change isn't easy, it's probably supposed to feel really awkward and weird. So, I guess that means I'm on the right path. I'll let you know how it goes.

The road

So, it's been awhile. I've said it before, I'll say it again. A cancer blog when you don't have cancer becomes a bit of a challenge to maintain. A challenge for which I am deeply grateful.

I've just completed my latest round of "is Laura still in remission?" testing wherein my normal cancer stress moves from a 6-7 to an 11. This round was particularly bad.

I had a mammogram on the 23rd of April. It was a 6 month follow up because I had some calcifications and they wanted to check in on them sooner than the year. That was on a Wednesday. On Monday I got a call to schedule a biopsy. No context. No warning. Just a cheerful man who had no idea why.  I called my oncologist's nurse and left a message asking for more information. Thankfully she returned my call within the day and said there wasn't a lump, I just had a patch at my original cancer site that was hard to see. The biopsy was exploratory and fairly routine. It might be cancer, it might be scar tissue, it might be just a bad film. Adventure! The great unknown!

Her call brought me considerable comfort but lingering in the back of my mind was the thought of "what if." I've always been more afraid of metastasis than I have been of recurrence. Recurrence, while a pain, is still within the realm of treatable. Once cancer gets out of your boob though, doctors stop talking about curing your disease and start talking about managing it. So this seemed a better option, but not by a whole lot.

I started worrying about having to do chemo again. I've said all along it isn't awful, but when faced with a repeat course my mind got a lot more clear about what it had been like. The mind has a nice way of glossing over the pain of your past. I don't have fond memories of cancer treatment, but I don't think of that time and feel immediately awful either. I've mostly forgotten what it was like in any real sense. The worrying brought it back.

I arrived at the biopsy to find that, in my particular case, an error had been made. The radiologist felt a magnified mammogram was in order, and that upon its evaluation, a decision would be made about a biopsy. I won't get into the details, but 40 minutes later after another round of boob-pinching, I sat across from a radiologist who told me that both he and another doctor had reviewed the films and were both of the opinion that the calcifications were in line with surgical scarring and nothing to be concerned about. I asked just how confident they were, to which he replied "very confident," a degree that is unusual in the cancer world.

So all my worrying had been for nothing. As it has been since the day of my diagnosis. Since that day I've gotten nothing but routine, expected or good news. And yet, the worry persists. In this case, I'm willing to pass on some of the blame to a medical system that is rather cavalier when dealing with patients for whom a cancer recurrence is not an everyday occurrence but still, there is a lesson here. One I will continue to be challenged to learn and, I suspect, will fail to learn well in the near future.

Worry is not helpful. So far, not only has it been tiring to live with, it's also been unnecessary. Worry does not change the future, it only poisons the present. If only I could drill that belief into my thick skull. In the meantime, I will have to settle for the meadow of relative calm in which I currently find myself and hope that with each piece of good news I get following a test or a scare, I will find it easier to believe that this really might all turn out in my favour.

The Blame Game

Lately, I've been inundated with a lot of media wherein someone says something about eating a kind of food or drinking something in particular and then links that to cancer (I'm looking at you, organic-sweet-potato-girl-who-is-obviously-reading-a-script-Grandma-wrote) without the benefit of, you know, research. Or science.

You see, this is my pet peeve. Because it seems to suggest that poor choices have led to cancer and as someone who's had cancer, I find that offensive. And inaccurate. Sure, there are behaviours that increase your risk, and the way you eat is a behaviour, but the truth is scientists only know about 40% of the reasons why cancer may occur.

Aside from a mild addiction to diet pop, I lead a very healthy lifestyle. If you could save yourself the trouble of cancer simply by eating well, I'd have always been fine. I eat well, I exercise, I don't smoke, I rarely drink. I'm the poster child for the kind of lifestyle that will save you from cancer. And if diet pop is really the culprit, you better believe I know a ton of people that dogged that magic bullet.

See, here's the thing. Cancer has been around a long time. Probably as long as humans. Scientists have discovered corpses from ancient Egypt (I'm talking King Tut styles) and have determined that they died of cancer. So it isn't some modern phenomenon caused solely by modern chemicals or GMO foods. Even if you accept the idea that more people are getting cancer (I could, but I'd want some research to back that up) you must also acknowledge that people are also living a hell of a lot longer, giving them more time to get cancer - which is, by and large, a disease of the elderly. Or, for people like myself, the old at heart.

I constantly resist the urge to rant on people's facebook pages about how this sort of casual linking of GMO foods to cancer is not only ridiculous, it's offensive. I figured here on my blog, I don't need to self censor. Now, it may be true that there is a link. But I'll wait until there is some conclusive, peer-reviewed, replicatable science out there before I start preaching at people about how they should buy only organic. From what I've read, this isn't what science says. In fact, science seems to say that there is no detectable difference between organic and non-organic food in terms of nutrient value or taste.

Would I encourage people to eat a healthy diet, and stay away from food that comes out of boxes? Of course! Do I try to avoid high-fructose anything? Yes. Would I take the extra step of saying that because someone ate a lot of Hamburger Helper it's no wonder they got cancer? No. Never. Because people are not responsible for getting cancer. Heck, there are a ton of smokers that smoke a lot and they will not get lung cancer. It is a crap shoot. You can reduce your risk; you cannot ensure you will not get cancer.

I will always encourage people to make healthier choices, but I would never, ever say "well, that's why he got cancer." If science can't tell you why, I'm not trusting the anecdotal blame of some random person and neither should you.

Long Overdue Rehab (and posts)

Sorry I've been away. There hasn't been all that much to report - cancer wise. I had a mammogram in September which went well in the "no suspicious shadows here" sort of way, and that's all I can really ask for. It doesn't, however, mean I've stopped worrying. Is there a pill for that?

I know there is, actually, but none of my health care professionals think I am sufficiently anxiety-ridden to give me one and I don't care enough to make them give me one. Instead I will settle for occasional, teeth-chattering, snot-running, sobbing melt downs. How's that for attractive. These don't happen THAT often (but I had a fun one last night!) and I'm working on re-training my brain away from always going to a default of "worst-case scenario." But still, ever new ache or pain stays on my mind. I'm pretty sure that's normal for those of us who've had the big C.

Anyway, that is not the point of this blog. I talk and write way too much about my fear of recurrence. The point of this particular blog is physio, which I've been doing for about a month. I started going to physio because of some back pain but I found a phsyio place that specializes in breast cancer recovery and since I wanted to deal with someone who was in-the-know about that sort of thing, I went with them.

Turns out I have all sorts of post-cancer treatment issues, which we're working on. Mostly it is just stuck scar tissue and this thing called cording but it can contribute to back pain. That and my poor posture have led me to a herniated disk, which has led to a numb butt (which led me to the emergency room today since that can be a very bad sign, but turns out it is not cancer or anything too serious so I'm happy with that!).

In Korea, and Canada for that matter, they don't really think about physio prior to, during or after treatment - though I guess that is starting to change in Canada. Evidence is starting to show that physio can be really helpful for managing side effects related to treatment so I bring this up in case you find this blog and you're in the early stages of treatment. I'd recommend at least going for a consult though I also understand that when you're in the thick of it, you have so many bloody appointments more don't seem that appealing. Do what's best for you, but think about physio. I wish I would have earlier.

Canadian Health Care

I'm about to embark on the next phase of my cancer journey: Canadian Health Care. Yep, I've left Seoul and my amazing doctors and nurses behind, but I still need check ups. So today I sat with my family doctor and got a whole list of referrals.

Now that I'm back in Canada I will have the BRCA test done. I'm fairly confident that I'm not a carrier and that I am, instead, unlucky. But it never hurts to know. And oddly enough, my sister can only have the test done once I've had it done, regardless of my results. So I will have my DNA read, and then she can too (but probably only if I am actually a carrier).

I was also pleased to be referred to an oncologist here. I wasn't sure how cancer follow up was managed in Canada and if I would be with my family doctor. I like the man but he isn't a cancer specialist. I know breast cancer is pretty run of the mill, but I was only 30 when I was diagnosed and that certainly isn't par for the course so I'm happy to have cancer experts involved. Plus, it will be refreshing to talk about cancer with an expert medical professional that is completely fluent in English. My doctors in Korea did well, but there was a lot of slow talking, repetition and periods of nobody knowing what anybody else was saying.

I think I will also look into cancer survivor supports now that I'm home. At this moment I'm not actually worrying that much about cancer, which is an amazing and welcome change of pace. Do you want to know my secret?

Simple: Buy a 60 year old house and start doing renovations.

This consumes so much of my brain power I have very little left to worry about rouge cancer cells. Instead, I'm worrying about wiring and plumbing and wall colours.

So that my news. I'm coming up on my 2 year cansiversary and that means tests and results and updates to follow but for now, I'm doing well and feeling good.