6 steps to advocate for your health throughout your cancer treatment journey

focused-young-afro-american-cancer-advocate

Your journey as a cancer patient is complex. Doctors treat, specialists advise, caretakers support, family and friends seek to remain positive. But your role is more than just being treated. It’s to get the best path for your cancer treatment – you should be the one who leads the charge of your cancer journey. This is not easy, but those who are more involved in their cancer journey report better quality of care and may even report better clinical outcomes. This is important because you are the best person to advocate for your health. Nobody knows your treatment journey better than yourself; consulting with specialists, undergoing tests, reading, and understanding your reports, and enduring every treatment.  

And of course, you will not go through it alone, friends, family and specialists are there to support you, but we want to make sure you have all the resources for the right treatment. This is essential as your treatment journey reflects on how you want to live your life. 

Being your own advocate requires mental strength and proactiveness. You might need to question the status quo or challenge the experts. It requires dedication, research, and the ability to promote your own wellbeing.      

Irrespective of being a cancer patient or not, being an advocate for your health is about fighting for all you are worth. We want to make sure you have the right resources to do just that. Below is a short guide on how to best advocate for your health through your treatment journey. 

1. Get informed 

Information is king, and being an informed patient will help guide you through your journey as you would ask better questions, understand diagnosis in context and better recognize symptoms or causes for concern.

Seeking the right information throughout your cancer journey; regarding the cancer types, stages, symptoms and getting familiar with the relevant treatment and clinical trials would lead you to a whole new perspective to understand the diagnosis or your doctor’s recommendation. 

You should aim to be vigilant. The internet is full of information regarding cancer. But not all of it might be accurate or relevant to your case. Identifying the right information can be difficult. 

How do I identify reliable cancer information?: 

  • Check the URL, if the website you get informed from ends with .gov, .org or .Edu may be more reliable than a .com. 
  • Is the content writer or the website from a medical professional?
  • Is the article reviewed by a physician, other health care provider, or medical review board?
  • Are the sources of the information listed?
  • When was the information updated? Outdated information about cancer treatments is rife, and new developments come regularly.
  • For cancer-based information, try using the CURIA App – it uses artificial intelligence to pool all reliable online sources on cancer treatments, clinical trials, and experts, aggregates them and relays them in the app. The information is tailored to your disease, so you only get the relevant and most accurate information. 

2. Use the time productively with your doctor

Face to face time with an oncologist is often limited. In addition, the stress of the appointment itself can mean you forget those important questions you had. This is your time, so make sure you take control of it to get the information you need.

To avoid the frustration of having unanswered questions you must: 

  • Note down questions and comments thoroughly, in advance of your appointment.
  • Take notes during the appointment or ask a friend or relative to do it for you.
  • Proactively ask questions to clarify anything you don’t understand; don’t be embarrassed to ask your doctor to repeat the information if you don’t understand them, just ask them to put into simpler words.

By doing this, you can carefully structure the time with your oncologist and make sure you get the information you need.

3. Seek second opinion

Seeking a second opinion should never feel like betraying your doctor. Oncology is a complex and fast-changing field, so there may be advancements that even your doctor isn’t fully aware of yet. A second opinion could give you more options and often a better understanding and broader perspective of your disease.

You can start by talking to your current doctor about alternatives they recommend, but here are some additional checkboxes to look out for when searching for a second opinion: 

  • Find a specialist in your type of cancer – again, the CURIA app can help you do this, giving you a list of specialists by location and cancer speciality. 
  • Check what cancer centre they are part of. Though there is a lot to be said for personalized care in a smaller centre, bigger cancer centres often have access to newer technologies or clinical trials. 
  • Ask for referrals to other patients with a similar diagnosis who have given permission to be contacted. You can also do that with the latest CancerTwin feature in your CURIA app. 
  • Are you interested in taking part in a clinical trial? If so, make sure to discuss this as a criterion for finding the right expert to treat you. 

4. Be involved in decision making

Studies have shown that patients who are involved in decision making concerning their health report high satisfaction of care. Beyond that, this is your body, and you should be the one making the final call about what to do with it. This involvement can bring a sense of control over your disease and empower you to keep fighting.

That said, these decisions will not be easy and should not be made lightly. Here are some tips to help you make some of those decisions:

  • Take a step back – make sure to get informed to have a solid base knowledge about your cancer and how it affects you. 
  • Take out time to do the necessary research into the specific option you are faced with.
  • Weigh out the options, ideally from more than one doctor. 
  • Once you reach a decision, based on sound knowledge and good research, don’t second-guess yourself.

5. Access psychological support 

Normally, cancer patients experience an emotional rollercoaster – be it physical exhaustion of chemotherapy, or the hope sparked by a new treatment. But that does not mean it should go unaddressed. 

A counsellor may help to unburden some of those emotions and concerns to help you focus on what’s most important: Recovery. 

To find a counsellor: 

  • Speak with your healthcare team. Some may offer this service. Alternatively, they may have recommendations or know of previous patients who have also had counselling.
  • Reach out to cancer societies that may also have recommendations. 
  • Trust in your counsellor is the key, so reach out to a few.  

6. Join a community 

Often you will find it hard to find someone who can relate to what you are going through. This brings out the importance of cancer communities, both live and virtual as they allow you to share your journey and learn from others who may have been in the same place as you are. 

Advocating for yourself during a cancer experience takes a lot of courage. So arm yourself with accurate information, especially when it comes to understanding alternatives for treatments and clinical trials. Get yourself a great oncologist who you trust and who will openly discuss your options with you and involve you in decision making. And most importantly, surround yourself with family and friends who will motivate and support you to be involved with your health.

Références

    1. Know Your Girls™. (2018). 7 Tips for Being Your Own Best Advocate. www.knowyourgirls.org/resources/7-tips-for-being-your-own-best-advocate/
    2. Haelle, Tara, et al. (2020). What Is Breast Cancer? Symptoms, Causes, Diagnosis, Treatment, and Prevention.www.everydayhealth.com/columns/kathy-ellen-kups-life-with-breast-cancer/what-it-means-be-your-own-patient-advocate/ 
    3. Lynne Eldridge, MD. (2020). How to Find the Best Lung Cancer Treatment Center. www.verywellhealth.com/choosing-a-lung-cancer-treatment-center-2248917
    4. Cancer.Net. (2021). Seeking a Second Opinion. www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/seeking-second-opinion
    5. NCCS. (2019) SELF ADVOCACY: A Cancer Survivor’s Handbook Cancer Survivor’s Handbook. www.canceradvocacy.org/wp-content/uploads/Self_Advocacy.pdf
    6. Cancer.Net. (2021) Taking Charge of Your Care. www.cancer.net/navigating-cancer-care/managing-your-care/taking-charge-your-care#:~:text=You%20can%20be%20a%20self,questions%20at%20a%20doctor’s%20appointment