I was recently contacted by an inspiring young researcher who is only in high school but is working on an awesome research project to understand how cancer impacts mental health in adolescents. She said, "I became interested in this topic because I knew somebody close to me who was diagnosed with cancer as a teen, and I became interested with how this age group differs from the other age groups but is often treated the same ways." 

She is looking for adolescents who are currently going through treatment, and are 15-19 years old, or who went through treatment at that age, to complete a short survey she has put together. The survey aims to determine how adolescents feel about their treatment, especially in regards to mental health and psychosocial needs. According to her, "The data will be used as part of a larger research project looking into ways to improve treatment for adolescents with cancer, which is a very marginalized group in the cancer community."

You can complete the survey by clicking HERE. The questions you will see are listed below!

1. What was the transition like for you when you were diagnosed with cancer?
2. What was your environment like? Were you treated more in a pediatric setting throughout your cancer treatment or in an adult setting?
3. How were you able to be involved in your treatment options and the treatment of your cancer? How do you feel this could have impacted you?
4. What differences did you notice that differentiated how you might deal with cancer as opposed to somebody both younger and older than you?
5. How do you feel community and having a strong support system can help a cancer patient, especially if they are an adolescent?
6. How can having a group of peers going through the same thing impact an adolescent patient, and do you have any experience of this happening?
7. Have you seen any changes from the beginning of your diagnosis to now that target psychosocial needs when treating cancer in adolescents? If so, what are these and how have they helped or worsened the issue?
8. How was the hospital you were treated at treating mental health? Was this beneficial to you or other patients?
9. How do you feel hospitals could work to target psychosocial needs more for adolescent cancer patients that would improve overall patient care?

If you have any questions, feel free to email me.

For some ideas on how to advocate for yourself and other young people going through cancer treatment and survivorship, check out my new post on Cancer Knowledge Network's website by clicking the link below!

AYAs: Make Your Voice Heard

The video ends  with a series of questions to ask your doctor, to find out more about your pain and how to cope with it. It is also important to know that most major hospitals will have psychologists working directly in pediatric or adult oncology that could also help you with coping with pain. Alternatively, your doctor might be able to connect you with a psychologist who specializes in coping with pain at your hospital. If you are interested in seeking out such specialists yourself, good places to look are the websites of major hospitals (particularly ones connected to a big university) since these will be the places where doctors and mental health practitioners, like psychologists or psychiatrists, tend to work more closely together to do pain research. If they are doing pain research, it means they will likely be more aware of the latest and greatest methods available to help you manage pain. You’ll want to look for a place that provides what is called a “multi-disciplinary approach” or involves an "interdisciplinary team," which means they bring together lots of different specialists to give you access to a wide range of potential pain management strategies. You can view the Johns Hopkins Pain Treatment Program or the Blaustein Pain Treatment Center at Johns Hopkins for examples of what types of programs to look for.

Essentially, there are 3 steps to take to begin to work towards coping with chronic pain during or after cancer treatment:

1) Understand what is causing your pain.

• Ask your doctor about what may be causing your pain, and whether it means you are safe to move around a lot or participate in normal activities. It may actually be that some activity could help your pain. For example, when my back pain started, it came on very suddenly and I woke up one morning somewhat unable to move my legs or stand up because it caused me so much pain. So, I assumed I shouldn’t move because the movement caused me pain. It was not until after several doctor’s appointments, when I was finally recommended to visit a physical therapist, that the therapist told me that there were activities I could try to actually help decrease or even take away my pain. She gave me stretches to do at home and recommended I go to yoga or pilates classes to strengthen my core muscles. She explained that this could help take pressure off of my back and relieve my pain. Since starting yoga and trying to go to a class 3-4 times a week, I’ve had little to no back pain. When I do get back pain, I’ve also found that the deep breathing exercises that I learned through yoga can help me move through the pain. Long story, short, get as much information about your pain and what you can do about it from your doctor or other healthcare provider, like a physical therapist.

2) Figure out what more can be done, or what other specialists you could see.

• If you feel like current methods are not helping, talk to your doctor about who else may be able to help you manage your pain. Are there other specialists you can see? What pain management options are available to you? For example, if you feel pain medication is making you groggy or makes it hard to function in daily life, is there a psychologist or psychiatrist that specializes in chronic pain who might be able to help you manage your pain in ways that may not require such strong medication?
  

3) If necessary, take matters into your own hands.

• If your doctor if unable to make or simply doesn't make recommendations you find helpful (which unfortunately can happen sometimes), don't be afraid to take matters into your own hands. You may also find it helpful to do this even if your doctor has provided you some suggestions. Seek other opinions. Talk to a range of providers - physical therapists, general practitioners (family doctors), oncology specialists, or psychologists or psychiatrists. Maybe visit a dedicated pain clinic that provides a multi-disciplinary/interdisciplinary approach to care, which would give you access to that range of providers. Do your own research and take to the internet to see if there may be others who are dealing with a similar problem that may have helpful advice to give you. For more information on how to advocate for yourself, you can see my previous posts about developing self-advocacy skills, like information-seeking skills and negotiation skills.

I appreciate the end of the “Tame the Beast” video, when the narrator says it is important not to give up hope. Managing pain as a cancer patient or survivor is a lot like managing a diagnosis of cancer. Like cancer, chronic pain is not something you expect to deal with at a young age. To get through both a cancer diagnosis and the onset of chronic pain, you have to stay positive, be persistent, and never give up hope that it will, somehow, all work out. If you have gotten through diagnosis (which you likely have, if pain is an issue you are dealing with), it means you already have the positivity, persistence, and hope you need. You may just have to put all of that energy towards a different purpose, to find ways to manage and cope with any pain that you experience.


​
​References:
Lu, Q., Krull, K. R., Leisenring, W., Owen, J. E., Kawashima, T., Tsao, J. C. I., … Zeltzer, L. K. (2011). Pain in Long-Term Adult Survivors of Childhood Cancers and Their Siblings: A Report from the Childhood Cancer Survivor Study. Pain, 152(11), 2616–2624. http://doi.org/10.1016/j.pain.2011.08.006
​

In December, I was fortunate to find my dream job and began working as a research assistant with the Behavioural Sciences Unit, proudly supported by the Kids with Cancer Foundation, in the Kids Cancer Centre, at Sydney Children's Hospital. I am honored to be a part of such an incredible group of researchers who are doing outstanding work to address the needs of and challenges faced by children, teen, and young adult cancer patients, survivors, and their families. I was especially honored to have the opportunity to write a blog post for the BSU's website about my personal experiences with cancer. You can find the post, and learn more about the BSU, here.

It’s been awhile since my last post but I’m excited to announce that the delay was because I have officially moved to Sydney, Australia! So, Riding the Cancer Coaster is now coming to you from the land down under! I wanted to take this post to share some resources that I have come across in the past few weeks. Here’s a list of 10 great resources for for AYA cancer patients and survivors (not listed in order of helpfulness/importance or anything like that - just a set of 10 helpful resources):

1. Princess Margaret Cancer Centre in Toronto, Canada has put together an fantastic, 14-episode YouTube video series for AYA cancer patients and survivors, called The C Word: Young Adult Cancer Series. You can find the video series HERE. Personally, I loved this video series because I think they are one of the first AYA cancer video resources that do not involve solely story-telling, but rather share the responses of current AYA patients and survivors to really important questions relating to the AYA cancer experience. The answers of the AYAs in the videos provide such informative perspectives too. 
   

​        https://www.youtube.com/playlist?list=PLaLgrtXadEF9Ue-PCSBuOkcsaj5Sp3Vzo

1. Memorial Sloan Kettering Cancer Center’s (MSKCC) resource page on eating well during and after cancer treatment is really informative. I was never really informed about how cancer treatment would impact my weight, nutrition, etc., and I definitely never learned about any nutritional guidelines. But, I really like the way MSKCC shares how treatment can affect your eating habits and that it provides a detailed set of nutritional guidelines. To read about Eating Well During and After Cancer Treatment, check out: https://www.mskcc.org/cancer-care/patient-education/eating-well-during-and-after-your-treatment
2. Everyday Health provides a very good article about PTSD and the emotional challenges that may come with life after cancer. As a huge advocate for mental health screening and care for AYA cancer patients and survivors, I think this is a really important topic to understand. PTSD or anxiety related to cancer treatment is not something that is really talked about at the time treatment begins, but it can become a very real challenge when treatment ends. To learn more about PTSD, other emotional side effects of cancer treatment, and ways to seek help/cope, you can read more here:
   

​        https://www.everydayhealth.com/cancer/ptsd-and-life-after-cancer-1231.aspx

1. Scientific American shares 8 things you need to know about living with cancer if you’ve just been diagnosed. They include everything from questions to ask your care team to a list of other resources to look through:
   

​​        https://www.scientificamerican.com/article/living-with-cancer-8-things/

1. Duke University Hospital’s new Teen and Young Adult Oncology program website has an awesome list of resource divided by topic. They share other sites to check out, and I think it’s particularly helpful because they share job and financial help resources, which are hard to find: https://sites.duke.edu/ayao/ayao-resources/
2. The Dana-Farber Cancer Institute in Boston, Massachusetts, hosts an annual conference for young adults with cancer and their families. It’s only one day but they cover a variety of topics through speaker sessions and workshops. You can learn more here: http://www.dana-farber.org/for-patients-and-families/care-and-treatment/support-services-and-amenities/young-adult-program/annual-young-adult-cancer-conference/
3. CanTeen, an Australian organization supporting teens and young adults with cancer, has a great guide through the process of adjusting to a cancer diagnosis. They cover coping with the news, how cancer is diagnosed, information about cancer in young people, and information as well as additional resources related to what to do if your cancer cannot be cured. You can find it all here: https://www.canteen.org.au/youth-cancer/diagnosis/
4. The International Psycho-oncology Society website shares a very extensive list of resources and support forums for patients and families affected by cancer. You can check it out here: https://ipos-society.org/for-patients/resources-for-patients-and-families/
5. Young Adult Cancer Connection has a resource page that includes information and resources related to patient advocacy, retreats, peer support, financial assistance, body image, fertility, legal assistance, videos, meetups, and more. You can read through their listings and browse by topic here: http://yacancerconnection.org/resources
6. SeventyK is a great website that has a educational resources, events you can attend, and a blog where you can read posts by other patients/survivors as well as posts about all things related to the AYA cancer experience: http://seventyk.com/

If you have any questions about the resources listed here, are looking for any other resources in particular, or just want to say hello, feel free to reach out to me via the contact form on this website, or email me directly at clarissa.schilstra@gmail.com! 

1. Evaluate the problem.
2. Gather information.
3. Break problem into parts.
4. Identify solutions.
5. Select best solution.
6. Take action.
7. Examine results.
8. Test and review.

Let's walk through this process:

• Instead of “evaluate the problem,” I prefer using the words “define the problem,” since I feel it is more clear. So, step one is to define what your problem is. Let’s say, for example, that my problem is that I want to speak up more when I am inpatient (staying overnight in the hospital) and the doctors come into my room on their morning rounds.

 

• To begin to tackle the problem, start by gathering information. This is where those information-seeking skills come into play. Going back to my example, I would gather information about what doctors I see while I am inpatient and what aspects of my health they are responsible for. I might also brainstorm reasons why I feel I am having trouble communicating with them. When gathering information, I really like to write things down so I can keep my thoughts organized. But, if you prefer other strategies, like talking through things with a friend or family member, you can choose whatever strategy you like. Keep in mind that gathering questions can be part of gathering information. You do not need to have answers at this stage. For example, in gathering information on why I feel I am having trouble communicating with the inpatient doctors, I might come up with questions like “why do they make me feel nervous?” or “why do I feel different about them relative to the doctor I see outpatient”? This step is meant to just flesh out what you know and what you do not know about your problem.

 

• Now that I have gathered information about my problem, I can start breaking it down. This is a key step I think because, personally, I find that feeling overwhelmed or not knowing where to start can be the biggest barrier to being able to work through a problem. While we have already been breaking things down to some extent, this step really means breaking down the problem you defined. So, going back to my example of of wanting to speak up more to the doctors I see when I am inpatient, I can use the information I gathered to break my problem into parts.

​                 Part 1: Who are the doctors I see when I am inpatient?                 
                 Part 2: What parts of my health are those inpatient doctors responsible for?
                 Part 3: Why am I uncomfortable communicating with the doctors I see                                  when I am inpatient?

• Let's start thinking about solutions.

​                 ​Part 1: Who are the doctors I see when I am inpatient?

​                 If I don not know the answer to this, I can ask those doctors directly, I can                    ask my nurse, or I can ask my parent/guardian. I can also do some research                  online to better understand what doctors come on inpatient rounds and                        what roles they play in caring for patients. From asking people or from                        researching online, I can learn that the doctors I see when I am inpatient                      possess a range of skills. I likely will be visited by one attending oncologist,                  who is in charge of caring for all the patients on the inpatient floor. He/she                  will possibly bring with him/her an oncology fellow (a doctor who is                          specializing in oncology and training to become an attending doctor), a                      few residents (doctors in training - below the fellow in the doctor                                hierarchy), and maybe also some medical students (students who are                          studying to become doctors).


                 ​​Part 2: What parts of my health are those inpatient doctors responsible for?

                 Again, I can ask people around me about this, or I can take to the internet.                  In asking around or doing research online, I would learn that the attending                  doctor is in charge of managing all aspects of my cancer care while I am                    inpatient. He/she is therefore responsible for all aspects of my health while I                  am under his/her care. This means that I can ask this doctor any questions,                  or bring up any concerns - whether they are directly related to my                            treatment or not. The fellow, residents, or medical students that the                              attending may bring along on rounds could also answer questions I have,                    but may be less knowledgeable about the details of my case, and may                        have less experience, so I should probably direct my questions or concerns                    to the attending if I have the opportunity.

                 Part 3: Why am I uncomfortable communicating with the doctors I see                        when I am inpatient?

                 This is one I can just think through. I seem to feel uncomfortable                                  communicating with these doctors for a few different reasons. First, when                    they come into my hospital room, I have trouble understanding who they                    all are and what their roles are. Second, it is difficult to tell who to ask                        when I have questions. Third, I feel like they are authority figures and                        that if they make decisions about my care, they know what is best and I                    do not need to question it.

• Select the best solution(s). In this example, there isn’t necessarily one “best” solution, so we can also rephrase this step to say select the “best solutions.” From the solutions I previously outlined, I defined who the inpatient doctors are, what aspects of my health they are responsible for, and why I was uncomfortable around them. Now that I have those answers, I can conclude that I don’t need to view them as authority figures because all but one of the doctors that come in are in training, so they are definitely not authority figures. Plus, the attending doctor I see when I am inpatient is responsible for managing my health, but it is MY health, so I can ask any questions or present any concerns to that doctor.

• Take action. Next time I am inpatient and the doctors come in on their rounds, I will better understand their roles and I will be able to acknowledge I have a right to ask any questions or present any concerns. With this new understanding, I will be able to ask questions or present concerns, thereby taking greater ownership of my health.

• Examine the results. If I tried asking questions or bringing up concerns, how did the doctors respond? How did I feel taking ownership in this new way?

 

• Test and review. If I continue trying to communicate more with these doctors while inpatient, and I feel more and more comfortable doing so, I can tell my problem-solving process has worked. If I do not feel more comfortable doing so, maybe there are more parts to this problem that I need to look into, or other problem-solving steps I need to repeat.

To recap:

Start with defining what your problem is and then gather any information you have about your problem. Gathering information can include brainstorming and coming up with questions related to your problem. Next, break down your problem into smaller, more manageable, pieces.  Once your problem is broken down, you are dealing with more specific, smaller issues for which it’s easier to identify solutions. After you have identified solutions to the various pieces of your problem, you can select the best solution(s). Examine the results of your chosen solution(s). Test out your chosen solution(s) and review whether they worked or not. If they worked, great. If not, try going back to your original problem, breaking it down again into more/different parts, and identifying other possible solutions you can try.  Whether you like to write things down as you go through these steps, or talk through these steps with someone, problem-solving can take time so be patient with yourself and be open to having to try out multiple different solutions.

You can read more about this process, and find other information about problem- solving skills, on the University of Kent website.

“Your communication skills can be applied to thoughtful interactions with your family, friends and caregivers, thereby increasing your knowledge and avoiding unnecessary misunderstandings.”
-National Coalition for Cancer Survivorship 

Communicating with your healthcare team can be one of the most difficult parts of adjusting to cancer treatment or survivorship as teens or young adults.

As children or young teenagers, you get used to having your parents be the ones to pay attention to the details for you, stand up for you when necessary, and ask questions when things get confusing. However, as older teens and young adults, you begin to understand more about your health and this can lead to the challenging situation of wanting to take greater control of it but not knowing where to start.

When I was diagnosed with my relapse at 13 years old, I had learned enough biology and chemistry in school to understand the explanation the doctors provided me with regarding what my cancer was and how it would be treated. However, I had not yet developed the communication skills to know what to say or when to ask questions in my appointments. When do I talk to my fellow? What kind of questions do I ask him versus my nurse? What is the difference in the role of the physician assistant I so often saw in the outpatient center and the fellow who seemed to be in charge of my case? And how on earth do I speak up in front of a room full of medical students and residents who, even if they don't intend to, look at me and talk about me in a way that makes me feel like I am part of some kind of zoo tour? I mean, when you're a 13 year old girl with ragged hair falling out, almost no eyebrows left, hooked up to all kinds of things that make you feel like your body is rebelling against you, and are then woken at 8 am to the knock of a pile of 20-30 somethings who are dressed in professional attire with notebooks in hand, ready to discuss your bowel movements…...it just isn't conducive to comfortable conversation and communication.
Instead of trying to get answers, I just muddled along until the answers arose or until the situation went away. I only asked questions when I was in an outpatient appointment with the fellow I knew was in charge of my case, and I otherwise let my mom do all the talking.

But, I regret that, because I let myself think that all those people in the hospital were in control, and I did not take ownership of my own health.  Being able to take ownership of your health means it's necessary to learn how to effectively communicate with everyone involved in your care.  

To develop communication skills, I think the most important place to start is in recognizing you are in charge, and your healthcare team is just there to provide support, advice, and guidance to you.  In addition to remembering you are the one in charge, there are concrete things you can do to communicate more effectively. I found a really helpful outline on WikiHow about how to develop good communication skills: http://www.wikihow.com/Develop-Good-Communication-Skills

The outline includes several in-depth descriptions of different aspects of communication, but my favorite part of it is their 10-second summary of how to develop good communication skills.

1. Make eye contact with your audience.
2. Watch your body language.
3. Be a good listener.
4. Learn to enunciate your words and to slow them down.
5. Keep your voice animated and use appropriate volume for the setting.

I'll elaborate a little on what this means for AYAs in treatment or survivorship:

• Making eye contact is definitely key. In an outpatient appointment with your doctor or nurse, making eye contact with them as they talk, or as you talk, demonstrates to them that you are paying attention and seriously interested in understanding what is happening with your care. Even though it should not be necessary for you to demonstrate such interest to them, I found it helped them to realize that even though I was only 13, I wanted to be involved in any discussions or decisions about my care.Eye contact is even more important (albeit much harder to do) when you are dealing with the med students and residents while inpatient. Making eye contact with everyone in the room, especially the attending physician in charge of them all, puts you in the driver’s seat and demonstrates to them all that you are listening and evaluating all of their discussion, so they know to watch what they say and how they say it.

• Body language. This is also key. Part of body language is eye contact, but the other part of it is how you sit while you listen or speak. While listening, leaning towards the person speaking, nodding your head in understanding or making an expression of confusion if you don’t understand can help you ensure you are learning everything you need to in an understandable manner. While speaking, making eye contact, sitting up straight (as long as you feel well enough to), and gesturing with your hands while you speak, help to engage the person you are speaking to.

• Being a good listener is super important because you have to listen to be able to understand what information is being provided to you, and then to be able to ask questions accordingly.

• Speaking clearly (enunciating) and speaking slowly ensures the people listening to you can understand what you are saying.

• Animating your voice and speaking with appropriate volume for whatever setting you are in can also make a big difference. Tired or overwhelmed doctors may be more likely to pay attention and listen carefully when you animate your voice and speak a little louder. 

Using these tactics and remembering you are in charge of your health may help you take steps towards improving your communication with your healthcare team.  This, in turn, can help you maintain greater ownership over your health and care.

Following last week’s post, I’m going to start tackling this self-advocacy puzzle by writing about the first of the 4 sets of skills the National Coalition for Cancer Survivorship outlines as necessary to be a self-advocate: information-seeking skills.
 
In thinking about information-seeking skills from a teen/young adult perspective, I think the biggest barrier to developing good information-seeking skills is simply the availability and accessibility of information. If you don’t have the information readily available to you, and/or you don’t have an easy/understandable way to access it, it can next to impossible to know what to do. That is, after all, why I started this website and wrote my book: the information I wanted was not available or accessible to me.
 
That being said, I have learned a lot about seeking information since I started this blog about 6 years ago. And, for our age group, it's still unlikely the information you want will be handed directly to you. So, I want to share my biggest tips and tricks with you to equip you with the knowledge to be a better information-seeker. Disclaimer: These are all suggestions based on my personal experience with seeking information for myself, blog, and my book...this is not professional advice.
 
To me, the most important place to start when seeking information is with defining what information you are looking for. We are used to just plugging things into Google when we want answers, but when it comes to health research, it can be useful to follow a bit more of a specific process.
 
Step 1: Define what information you want. I like to turn the topic into a list of key words/phrases. Be as specific as possible.

• This may seem silly, but using key words and being as specific as possible can make the research process a lot easier. This tactic is helpful because a lot of major organizations and hospitals use something called Search Engine Optimization (SEO), which means they fill their website pages with key words that help search engines like Google to find those websites first and filter those websites to the top of Google Search lists. By using keywords, you can take advantage of SEO to find what you want, and get Google to work for you rather than against you.

 

• For example, if I want to research web-based programs for teens with cancer, I can definitely define that as my topic. But, if I put that into Google, it might take me hours to find something useful because hundreds of results will come up. So, I like to make a key word/phrase list. In this case, I would include “online forums for teens with cancer”, “video chat platforms for teens with cancer”, “hospitals that run web-based programs for their teen patients”, and “organizations that run online support programs for teens with cancer”. You can make this kind of list based on key words/phrases you already know (as I did in this example, since I know web-based programs include online forums, video chat platforms, etc.). Or, if you are not familiar with a topic, you can make the list by plugging your general topic into Google and scanning the results to see what key words/phrases you see continually come up.  For example, if I’ve just been diagnosed with leukemia and I want to learn more about it, but don’t know where to start, I put “leukemia” into Google. Scrolling down the results page, I see words like “Causes”, “Symptoms”, “Childhood”, and “Treatment”. So, I can make a list of search ideas by combining these key words. Given I want to find out of teenage leukemia, not childhood leukemia, I come up with the following: “teenage leukemia causes”, “teenage leukemia symptoms”, and “teenage leukemia treatment”. This way, I break down my search into smaller pieces that might lead me to more direct results.

 
This brings us to Step 2: Use the internet **very carefully**. I compiled almost everything I have written about on this website and in my book from online research. So, the information you want is out there, but you must know where to look, and it is critical to understand what are reliable sources of information. This is where the **very carefully** comes into play.

• Reliable sources of information include major health organizations, academic journals, or hospitals.  My main sources of information, for both the psychological and medical aspects of treatment and survivorship, tend to be major organizations that you can see have been around for a long time and have information provided by physicians, psychologist, nurses, or other health professionals (some examples include The National Cancer Institute, The American Cancer Society, Cancer Knowledge Network, Stupid Cancer, Livestrong, or hospital websites). You can check out the resources page of my site for more ideas on where to find the information you want. These sites are very useful because they provide a very wide range of resources, but also convey the information in a way that is much easier to understand.

 

• Another great way to find reliable sources of information, particularly if you want to get into the nitty-gritty science of cancer treatment, psychological services, and survivorship, is by taking a more academic approach to your research. The easiest route for this is Google Scholar because it easily allows you to search for research articles about almost anything. You still want to be careful when using this search tool though because there are a lot of medical journals out there and not every article is reliable.

 

• In Google Scholar, a good way to be sure the article you are reading is from a reputable source is to look at the number of times the article has been cited. For example, when I search in Google Scholar for “support for teens with cancer” I get a lot of results. But, when I look at the “Cited by…” under the link, I can see how many people have cited the article in their work. Below is a screenshot of one of the results of the Google Scholar search. You can see the "Cited by..." on the bottom left.

• Choosing articles that have been cited more than 20-30 times is a good idea, just to be on the safe side, because then you can be sure multiple other research professionals found the information reliable enough to use in their own work.

 
Step 3: Use the most recent information you can find.

• Another important thing to consider when using the academic research approach (and when doing any online research for that matter) is how recent the information is. In Google Scholar, you can filter out articles by the year they were published. It is generally a good rule of thumb to stick to research that has been done in the past 5-10 years.

 

• Similarly, when using websites like the National Cancer Institute site or Stupid Cancer, you can also keep an eye on how recent the information is. For example, on the National Cancer Institute website, there is a coping guide that talks about feelings and cancer. If you scroll all the way to the bottom of the page, you will find a “Posted” stamp, which says “Posted: December 2, 2014.”  These kind of date stamps can typically be found at the bottom of information pages. Alternatively, if you check out blogs, like this one, or the Stupid Cancer Blog, the date is typically at the top of the posting, under or next to the title.

 
Finally, we come to Step 4: Developing your resource portfolio.

• Once you have gone through several searches and have become familiar with a range of sources, you will start to find ones that you like more than others, or ones that publish new information on a continual basis. For me, my resource portfolio includes the resources I share on the resource page of this website, as well as the academic sources I find through Google Scholar. I also prefer sources that have something like a blog where there is new information shared on a regular basis, so I can keep up-to-date on the information I am interested in. For example, you can get email updates from certain organizations, like the Dana-Farber Cancer Institute Insight Blog, you can follow the National Cancer Institute on social media, and you can subscribe to the electronic or paper version of Cure Magazine. By becoming familiar with the sources of information out there, you can make it a lot easier to get the information you need, when you need it.

 
The reason I have found information-seeking skills to be so helpful is because they can increase your self-confidence. When you go into doctor’s appointments or meetings with health providers, and you are armed with the knowledge about your condition, you are better equipped to ask questions, and this ultimately helps you take greater control over your health and wellbeing. Long story short Information -> Knowledge -> Self-Confidence -> Owning your health and wellbeing.

In a post for Cancer Knowledge Network that I wrote back in November, I talked about the challenges involved in the transition from pediatric to adult healthcare, and the need for more support and education to be provided to teens and young adults to be able to successfully get through this transition. In the last couple of months, I have gotten to wondering what, above all other obstacles, is the most important thing to help get young people to feel comfortable taking charge of their own care? After talking with some other young adult cancer survivor friends, and some friends of mine who have chronic illnesses, one topic repeatedly came up in the discussion about transitioning to adult healthcare: self-advocacy.
 
So, what exactly is self-advocacy?
 
According to the National Coalition for Cancer Survivorship, self-advocacy means: “…You arm yourself with the tools and skills necessary to feel comfortable about asserting yourself and communicating clearly about your cancer care needs.” They also summarize that the skills necessary for self-advocacy include: information seeking skills, communication skills, problem-solving skills, and negotiation skills. 

Through further research, I also found that perspective can play a role in enabling or disabling you from successfully advocating for yourself. I came upon an article about self-advocacy by a psychologist, who is herself a cancer survivor, in the online magazine Psychology Today.  One statement she made that really stood out to me said that many patients “…may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions or alienating their doctors by questioning them.” This highlights a perspective that I know, from my own experience, seems to be at the heart of helping teens and young adults become self-advocates: learning that your doctors are not controlling authority figures and that there are no “dumb” questions.
 
To summarize, it seems there are 3 crucial pieces to this self-advocacy puzzle: (1) Developing a range of skills that enable you to feel confident in your ability to clearly communicate your needs, (2) recognizing that your doctors are not authority figures with control over your future, and (3) it’s your body and your health, so you are entitled to ask any question at all – there is no such thing as a “dumb” question.
 
Seeing as this is a pretty complicated puzzle, I thought I’d take some time to break it down. In my next few posts, I’ll cover each of these puzzle pieces, to try to make it easier for teenage and young adult cancer patients or survivors to piece together the necessities for becoming self-advocates.