Tag: decisions

Testing 1, 2, 3…

Posted on by Steph

A couple days ago, my dad and I met with a geneticist to discuss our genes and cancer and fun things like that. I know very little about genetics and DNA (and biology, for that matter), so I find it really fascinating to learn about how complex human systems are, and how much new information is being discovered every day.

Seriously, this just looks like a couple horseshoes and some pretty curling ribbon to me. Thank god there are people out there who understand these things.
Seriously, this just looks like a couple horseshoes and some pretty curling ribbon to me. Thank god there are people out there who understand these things.

Experts say that most incidents of breast cancer are not hereditary, and are due to various risk factors (such as radiation exposure, obesity, alcohol intake, etc.). But a portion of breast cancer cases are due to a genetic predisposition. You may have heard of the well-known BRCA1 and BRCA2 genes (as made popular by Ms. Angelina Jolie), which greatly increase the risk of having breast and ovarian cancers. But from meeting with the geneticist, I have learned that there are in fact a whack of other genes that may predispose you to a whole array of cancers.

Hereditary cancers are often suspected if a person was diagnosed at a young age (check), diagnosed with a rare form of cancer for their population (28 year old with breast cancer – check; adult male with breast cancer – check), and if related cancers are present in multiple generations (check). So as you see, there is good reason to wonder if my and/or my father’s cancer was the result of a faulty gene. It could just be completely random, and a huge coincidence, but deep down, I really don’t believe that. I have met so many people who have a very high incidence of cancer within their families, despite being healthy and doing everything “right” to avoid getting cancer. It’s obviously a lot more complicated than we realize.

The geneticist asked us if we would like to undergo testing of 21 genes that have been identified to increase cancer risk. Some of them increase your risk of certain cancers by a great deal, and others more moderately. The types of cancers associated with these genes include breast, ovarian, colon, and a bunch more. When providing me with an example, the geneticist mentioned the gene that increases risk of stomach cancer, and if positive, the possibility of removing the stomach. Um, HOLD IT RIGHT THERE, DOC. There’s obviously no way in hell I would give up my stomach, since doing that would greatly put a damper on my favourite activity: EATING. So let’s hope that bleak illustration does not ever become a reality. I’ll take a pass on that one, thank you.

Genetic testing can be very tricky psychologically, and it’s not for everyone. Some people don’t want to know what terrible things might be lurking around the corner. It can be very unnerving to have that information. But on the flip-side, it can also be reassuring — to know that you didn’t do anything to “cause” your cancer, and to know that there are steps you can take to lower your chances of cancer in the future.

I believe that knowledge is power, and as you might have figured out by now, I am an information-seeker and am constantly looking for answers to all of life’s questions. So for me, it was a no-brainer to partake in the genetic testing, and my dad felt the same as well. We signed some forms and gave some blood and put them in a fancy box, and now we wait (likely for several months) to hear the results. Since this testing currently is not available in Canada, the government needs to be petitioned to cover the cost of the test at a lab in the States. The doctors are handing all of that, but if it does not get approved, I’ll obviously step in and make a scene and make sure it goes through. You don’t want to mess with a feisty cancer blogger, I’ll tell ya that much.

Many of these genes were only recently discovered and not that many people have undergone testing. So we’re kind of like pioneers. Or something.

Obviously it is terrifying to think of any of these genes coming back positive, and what that might mean for me and for my family. But I also can’t help but be curious about what is going on in my own body. I will always be seeking out more answers, wanting to know the good and the bad, and everything in between.

But for right now, all I can do is wait, and hope. And in the meantime, I’m going to enjoy having my health, my life… and my stomach.

 

Another part of the story

Posted on by Steph

Besides a minor mention here and there, I have never really written about fertility and cancer — specifically, my fertility and my cancer. I’ve had numerous reasons why I didn’t want to write about it: feeling that it was too personal and private, something only to be discussed by me and my husband, or worrying about friends who are moms or soon-to-be-moms feeling they can’t talk about anything baby-related in front of me. But I’ve come to realize that by not writing about it, it sometimes puts me in uncomfortable or awkward situations, which other people likely aren’t even aware of. And why should they be? I don’t talk about it, so their ignorance is really my own doing. I also know that a lot of people read my blog as a way to educate themselves about how it feels to have cancer, especially as a young person, and by not broaching the very important issue of cancer and fertility, I’m not doing a really great job as cancer teacher.

So, here we are. And I am ready to talk about it. Or at least, some of it.

When I was first diagnosed with breast cancer at the age of 28, one of the first things my doctor told me was that she wanted me to see a fertility specialist immediately, since certain cancer treatments can have a negative effect on one’s fertility. This is one of the very major issues facing young adult cancer patients, and unfortunately, it is often overlooked. I have heard countless stories of young men and women who were thrust into cancer treatment, without their fertility being discussed. This is a huge problem, and one I think all young people and all doctors should be aware of. So in that regard, I was very fortunate that both my family doctor and oncologist had discussions with me about how my treatment might impact the potential for me to have children.

Learning that my ability to have children might be compromised on the same day as learning that I had cancer was a major double whammy. It was a tough pill to swallow, when I was already considering the possibility that I might not even live long enough to start a family in the first place. Most people who get cancer are quite a bit older, and don’t have to deal with such things. But unfortunately for me, and for my husband, we had to deal with it, and fast.

The same week that I was meeting with breast surgeons, trying to decide if I should remove one breast or two, I was also meeting with a fertility specialist to discuss my options. To say I was a bit overwhelmed would be a wild understatement. I had tons of information coming at me from every angle, and very little time to make decisions that would greatly affect my future. It was kind of a shitty week, you might say.

The fertility specialist did various tests and exams, where my husband and I learned that, yep, we were indeed fertile. Yippee. Too bad I was about to shoot my body full of drugs that could potentially ruin all that.

There are specific chemotherapy drugs that are known to have a damaging effect on fertility. Unfortunately, I had to get one of them. This was not an option. You can’t get pregnant if you’re not alive (lesson of the day!), so staying alive was my first priority, above and beyond everything else. And sadly, in the world of cancer, the best proven method of doing this is often by poisoning yourself.

We were given the option of retrieving embryos, which we could then “store” for  the future, if needed. At first, this seemed like a good solution. An insurance policy, in case the worst case scenario became a reality. (A very, very expensive insurance policy, mind you, as these procedures aren’t covered in Ontario for cancer patients.) With barely any time to think about it, it seemed like the smart thing to do. I got a bunch of prescriptions for shots I would need to give myself and a million consent forms that needed to be signed, and we were off to the races. At least, that was the initial plan.

As I began doing more research about the hormones I would have to take, despite some limited studies showing it was safe, I started to feel uncomfortable by the idea of messing with my hormones, especially when I have a hormone-sensitive type of cancer. It felt risky, especially when knowing that a) we might not even need the embryos and b) if we did need them, there’s not even any guarantee that the procedure would work. In many cases, it doesn’t.

I was also presented with the option of joining a clinical trial, where I could potentially receive a drug that could benefit me, targeting my specific type of cancer. If I chose to do the fertility preservation, there was a good chance the start of my chemo would have to be pushed, and I might not qualify for the trial.

To top it off, the thought of injecting myself with hormones and dealing with potential side effects from that and having to undergo the egg retrieval, at the same time as being in tremendous pain from my double mastectomy with immediate reconstruction and gearing up to start chemo… well, it became less and less appealing.

One night, I was filling out the form where we had to decide what to do with the embryos if we ended up not needing them. Would we donate them to another couple? Give them to research? Have them destroyed?

Suddenly, it all just felt like too much. It felt like I was doing what I thought I should do, rather than what my gut was really telling me to do.

After expressing my concerns to my husband, he admitted to having the same concerns too. We discussed it some more, and then came to our final decision that we were going to put the brakes on the preservation process, and have faith that things would work out for us. Dealing with the cancer felt like more than enough for us to have on our plate at that time. So with that, we put 100% of our focus into making me healthy. I joined the trial, began my treatment, and tried to push thoughts of babies and pregnancy far out of my mind.

None of this has been easy. I remember being so angry that I had to make such hideous choices. I shed a lot of tears, cursing cancer for destroying my dreams. I have wanted to have children since I was a child myself. Anyone who knows me knows this fact about me. We had hoped to have a mini S or mini J pretty much… right now. But cancer decided to show up and derailed the plans and the future we had envisioned for ourselves. At least for now.

So where does that leave me now? I am not quite sure. It is not really possible to tell what effects the chemo had on my fertility, since I’m taking a drug which messes with my hormones. And, to top it all off, I am not allowed to be pregnant while taking said drug… which I am supposed to be taking for a minimum of 5 years, and possibly 10. Or, I have the (not medically-approved) option of coming off of it early, which there are NO good studies to support, and possibly increase my risk of having the cancer come back and not surviving. So my big decisions are not over. Not even close.

It is hard seeing people around me getting pregnant and having their babies turn into toddlers. It is hard seeing photos posted at every hour of the day. I’m fairly certain anyone who has wrestled with any type of fertility issues can relate on that one. We live in a very baby-centric world, especially when you are my age. It ain’t easy. (Although I make myself feel better constantly by thinking of the vacations and nights out my husband and I can take whenever we please, and our ability to sleep in on the weekends as late as we wish. We often say “If we had a kid right now, we couldn’t be doing x,y, or z.” It makes me feel better… for a moment, at least.) If anything, this whole ordeal has made me much more sensitive and empathetic toward couples who are experiencing infertility problems.

I do have a lot of hope for our future, and our family. I know, regardless of fertility issues, there are options. I like to think that all of this sad stuff will eventually lead to somewhere happy. I need that hope, and I hang on to it.

To do or not to do

Posted on by Steph
This is how I'd look right now, if I were a cartoon dwarf.
Oh, Grumpy. I feel ya, pal.

Many people believe that when it comes to cancer, things are fairly clear-cut. You have this type of cancer, you follow this type of treatment, and you do whatever the doctors tell you to do. Unfortunately, this is very rarely the case, although it sure sounds nice. Cancer is all about unknowns and grey areas. This can be especially true when you are a young patient, as many of the studies and numbers do not necessarily reflect people of a younger age, who are often “high-risk” – the fabulous term with which I have been labeled by doctors. Of course, there have been many advances in cancer research and treatment. But even so, sometimes there is not enough data and information to work with, and ultimately, the patient is the one who has to decide what they feel most comfortable with and how they want to proceed in many areas of their cancer treatment.

As a control-freak, you would think it would thrill me to get to make choices and not be told what to do in a given situation. But no, my friends. That is not the case. You see, when it comes to making decisions that can affect your ability to be alive, it’s not such a great feeling to be in control. In fact, it’s quite a lot of pressure, and frankly, a pain in the ass.

Throughout my cancer “journey” (barf… someone find me a better word for “journey”), I have had to make many impossible decisions. Decisions that affect my body, my health, my chance of survival, among other things. This past week, I have been confronted with yet another huge decision in regards to (what feels like) my never-ending treatment. And again, doctors can give me the facts, but not advise. It is in my hands. My stupid, sweaty-palmed hands.

As a young girl, I was an excellent student. Straight A’s all the way, occasionally referred to as “The Brain” or “Brainer” by my schoolmates (not the coolest nickname one could possess, but I suppose there are worse). I would ace a test or get accolades from my teacher for a story I wrote, without putting in a great deal of effort. This continued throughout university, where my roommates would get frustrated at my ability to write an essay or finish an exam at a dizzying pace, while they would still be trying to come up with a thesis statement.

The student inside me, who has been locked away for years, has returned as a result of my new current interest: curing my cancer. I spend endless hours reading studies that I really have no business reading, in that I usually have to google every other word to make sense of the terminology. I read articles, message boards, books, trying to stay on top of all the current and relevant info pertaining to my particular case. Trying to search for the answer to whatever question I am currently faced with.

But unfortunately, unlike school where I could essentially bullshit my way into getting a great mark (one teacher in high school actually told me I did that and I took it as a very high compliment), I can’t do that here. I can’t make the answers appear. I can’t pretend that I know them all. Because no one does. Most of it is just a crap-shoot, where you make a decision, pray it was the right one, and move on the best you can. If you can.

Today I feel tired of making these big decisions and trying to be the all-star cancer student. I feel over it. The Brain can only handle so much. As my mother said to me earlier, I should be making decisions about what colour nail polish to wear, not trying to figure out whether X or Y may or may not kill me. (Note to self: must paint nails.)

So, all this to say, I’m feeling a bit grumpy today. Grumpiness is another unfortunate side effect of cancer. And, as the cherry on top, tomorrow I get to do chemo #3. They better have a good stock of popsicles this time. Although hopefully I won’t have to make a choice between flavours. I don’t need anything else on my plate right now.