The “Good” Cancers Aren’t So Good

no good cancer

As some of you may know, September is Thyroid Cancer Awareness Month. However, September is also Childhood cancer, Leukemia, Lymphoma, Prostate, and Ovarian Cancer Awareness Month. That’s a lot of awareness for just four short weeks! But a couple of the cancers we celebrate and advocate for this month are often called the “best” cancer to get. Thyroid cancer and prostate cancer are both sometimes called “good” cancers, due to the fact that they are considered easily treatable when caught at early stages and are often thought to be slow-growing. Though it is true that thyroid cancer and prostate cancer both have very high five-year survival rates (98% and 99%, respectively), there isn’t anything “good” about them.

Even with such low mortality rates, thyroid cancer and prostate cancer are fairly common cancers. The American Cancer Society has estimated over 180,000 new cases of prostate cancer and over 64,000 new cases of thyroid cancer for this year. Prostate cancer, though often thought of as a “good” cancer, it is still the second-leading cause of cancer deaths in men, only preceded by lung cancer.

I have been told by doctors that thyroid cancer “is the best one to get,” yet treatment often includes removal or destruction of the thyroid, which is a very important little gland! Though the surgery can usually be done quickly, recovery takes time for the neck muscles to heal themselves, as they must be cut in order to reach the thyroid. Many people, including myself, often experience permanent voice changes after thyroidectomies, and are completely dependent on synthetic thyroid hormone for the rest of their life. Prostate cancer typically involves very tricky surgery, and even when it is successful, it can still lead to chronic issues such as incontinence or impotence.

Both diseases are usually described as “slow-growing,” but when either of these cancers spread it can lead to many severe issues. Thyroid cancer often spreads first to the lymph nodes, and can metastasize in the lungs. When prostate cancer spreads, it typically affects lymph nodes and the pelvic or hip bones.

Every stage and type of cancer causes harm to the body, and many times the effects of treatment last for years. I don’t see anything “good” about that. Putting an extra label of “good” or “bad” onto this disease creates a completely unnecessary hierarchy on something that doesn’t need to be ranked.  It’s time to remove the phrases “good cancer” and “bad cancer” out of our vocabularies, and focus on finding more effective treatments for all cancers and supporting the patients and survivors.

If you liked this piece, you might also be interested in reading 8 Years of No Good Cancer and The Anti-Bullying Cancer Manifesto

How To Be Your Own Advocate

self-advocacy tips

Many people after cancer or some other illness often say “Be your own advocate.” But what does that entail?

Put simply, being your own advocate is the opposite of being a “passive patient.” A passive patient is one that takes everything their doctor says at face value. It’s one thing to trust your doctor’s judgement, but it’s another to accept everything they say and do blindly. Learning to advocate for yourself not only is a great way to share knowledge with others in a similar situation, but it can lead to a better quality of care from your health providers.

Here’s a few quick tips on being an advocate for yourself:

Do (some) research.

Now, I know what you’re thinking: Everyone always warns not to Google your condition…why are you telling me to do that? While I agree that it’s easy to fall down the search engine rabbithole (I’ve been there), some basic knowledge on how parts of your treatment work will really help in the long run. For example, if your doctor suggests a trial or medication, basic knowledge of how it works and a quick summary of side effects are good things to keep in your back pocket. It’s a scary thing when you have a new symptom come seemingly out of nowhere, but if you’ve done your research on your meds you can quickly figure out if it’s something new or just a side effect.

A word of caution: try to avoid doing research on days when you’re not in the best of moods. That will definitely make your feelings multiply rather than go away. (Trust me, I’ve done this way too many times.)

Be prepared and ask questions

If you’re not sure why you’re being submitted for a test, put on new medication, or anything your doctor is telling you to do, speak up! You have the absolute right to ask your doctor questions, and there’s no such thing as a dumb question when it comes to what’s happening with your body. Ideally, your doctor should let you speak first, ask some questions to get a better understanding of what’s going on, and then use that to come up with a solution, talking you through as much as possible. But we all know that’s a rarity since many doctors see multiple patients each day and may only have minutes to look at your charts. Make the most of your time with your doctor by being prepared for your appointment:

  • Make a list of all the medications you’re on. You’ll usually have to write it down or give it to a nurse before you see the doctor, anyway. Be sure to include the doses for each if possible. And yes, this includes all forms of hormonal birth control! If you have an implant, you definitely need to let your healthcare team know about it.
  • If you’re going to a follow-up appointment, make note of any symptoms you’ve noticed since the last appointment. Also keep in mind if it’s a side effect of a medication, which you would likely know by doing your research!
  • If your doctor starts saying a bunch of words or concepts that you’re having a hard time translating into not-doctor, ask for an explanation. Doctors can sometimes get carried away with jargon and will keep going until you say something or until the appointment is over. Don’t be afraid to admit you don’t know what a word means; It’s important to understand everything your doctor says.
  • Write down a list of any questions you can think of before arriving at your appointment. If you’re prone to forget things (hello, brainfog!), this will help you stay on track rather than just blanking out at the end of your appointment.
  • If you’re on medication that’s checked regularly, ask your doctor what the goal is for you. For example, since I no longer have a thyroid and am completely dependent on synthetic thyroid hormone, my thyroid doctor wants my Thyroid Stimulating Hormone level (TSH) to be as close to 1.00 as possible. With that information, I can make note how I feel when my TSH is close to my target and recognize when something may be off. (Please note this is not typical for everyone that is on thyroid medication, this is my personal target keeping in mind my height, weight, and type of thyroid cancer!)

A couple of good ways to keep track of everything would be a small notebook that’s designated for your appointments or even just a memo in your phone. There are also several symptom tracking apps, most of which are free. Here’s a list of top 100 health apps for Apple and Android. (A lot of apps on these lists are period trackers, which are also good to use if you have periods.)

Share your story and learn from others

One huge part of being an advocate for yourself is also learning to advocate for others. This doesn’t mean you have to be your county’s top Relay For Life team – although if that’s your goal then good for you and good luck! It can mean just finding a community. The best advocacy lessons I’ve learned have all come from other people in the thyroid cancer and young adult cancer communities. Even a quick “so happy for your clean ultrasound!” or “I’m sorry you’re having a rough time right now” from a cancer or chronic illness buddy is enough for my day to get a little better. Once you find a community that works for you, it quickly becomes a place where you can vent and give each other advice based on what you’ve learned from each other.

Advocacy looks different for everyone. For some, it may just be bringing a list of questions to ask your doctor. For others it may be organizing a 5K to raise money for an organization that’s helped them through their illness. It may be a bit daunting looking at someone else’s example of self-advocacy, but everyone starts at different places. If speaking up at your doctor’s visits seems too much for you, start small. Try to ask one or two questions at each appointment at first, then build your way up as you get more confident in doing that.

The main thing about your health is that it’s about you, so it’s in your best interest to make sure you’re not a passive patient. Now get out there and advocate for yourself!

What self-advocacy tips and tricks have you found helpful?

Dropping the “C-Bomb”

cancer bomb

I told someone a secret recently. Well, it’s not quite a secret since quite a few people know it already, but I hadn’t felt the need to tell that particular person about it.

In a strange turn of events leading out of boredom at work, a coworker and I were trying to figure out via Facebook if we knew anyone mutually since we found out that we both grew up in the same area. One thing led to another and they stumbled across my Facebook page, and subsequently onto the “secret”: – a giant pink, purple, and teal banner reading “September is Thyroid Cancer Awareness Month.”

They asked who it was I knew that had thyroid cancer.

“Uh, I did.”

Yep. My not-so-secret was out. I had thyroid cancer.

“Really? When was this?”

“I was 20 when they found it. I’ve got a nice scar, now.” I quickly pointed at the faded pink line on my neck, and hoped that they couldn’t tell I was shaking with nerves and that it would be the last question about it. Thankfully, it was.

Almost 4 years since my all-clear, I still get nervous letting people in on this part of my past. Most of the time I don’t bring it up unless asked. My introverted, Type-B self is much more comfortable learning about someone else’s past than letting them in on mine. The first time I told my story was nerve-wracking to say the least – at a small party at a professor’s house, about four months after my clean scan. I shook and stuttered the entire way through. I felt everyone’s eyes on me as if they were bright, hot lamps. I don’t think I even looked up from my plate.

I shy away from telling people this important fact of my life partially because of how many received the news while I was in treatment. I couldn’t even begin to tell you how many people reacted with “Oh, you poor thing!” “You’re so young!” – even from medical professionals who were involved with my treatment! I know most people who react that way mean well, and probably don’t know what else to say, so I should try to give them a little slack, right? But sometimes it feels like damage control when I let people in on my biggest bombshell.

I don’t want people to feel sorry for me, but I also worry what people think of me when they hear the words “I had cancer” come out of my mouth. Do they think I’m weaker now or stronger? Did this make their opinion of me change or are things still the same? (Just some of the perks of being stubborn and insecure at once.)

It does get easier to tell my story as time goes on, but I still struggle from time to time. I’m proud of how far I’ve come since diagnosis, but that doesn’t mean I want to tell everyone I meet via bullhorn. I’m fairly vocal about my experience online, but will not say a peep to most people face-to-face. Maybe I’m more comfortable with that sense of anonymity…along with the fact that I don’t have to actually say “I had cancer” with my mouth. Words have always come more easily to me through writing rather than speaking.

Cancer can be a prickly subject even if you’ve been “out of the woods” for a while. It’s okay to still get nervous a year, five years, or even ten years later. You have the right to tell people on your own terms and in your own time. If you want to go around wearing your newest cancer awareness swag and drive everywhere with a bumper sticker ribbon on your car, go for it. If you’d rather retweet other people’s words about having cancer, that’s great. If you’re somewhere in the middle, that’s fine, too. Do what you’re comfortable doing. If people start to pry where you don’t want them to, you have every right to tell them so. Don’t let anyone push you into giving out more information than you’re comfortable sharing.

Welcome Jess!

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Jess!

—

I was diagnosed with thyroid cancer in 2011 at the age of 20 while earning my Bachelor’s in Marketing, and I’m currently living cancer- and thyroid-free since 2012. Though I somehow managed to graduate on time in 2013, the transition from cancer patient to cancer survivor is a foggy, lonely memory. I remember constantly wishing I had someone to talk to that would simply just say “Hey, I’ve been there, too.” I’ve made it my personal mission to be that person for someone else. 

I love music, theatre, animals, chocolate, and my high-school-sweetheart-turned-husband. My latest hobby is being terrible at video games. I also make videos on Youtube about beauty, chronic illness and cancer, and a hodgepodge of other things.

Twitter: @jessneedsanap

Tumblr: jessneedsanap