Self-advocacy for Cancer Survivors

Advocacy means to actively support a cause, idea or policy. The National Coalition for Cancer Survivorship (NCCS) argues that advocacy is a continuum that starts at the moment of diagnosis. That is the defining moment when individuals diagnosed with cancer (and/or their loved ones) must play a very active role in assuring that they receive quality care.

When I taught college students I told them it is not a question of whether they will encounter challenges in life; the issue is what tools they carry in their life journey backpacks to help them cope with hardships. The tools that helped us maneuver through school, relationships and career challenges may not work as well when we are faced with a potentially life threatening illness. The most critical tools in the cancer journey are asserting yourself and clearly communicating your needs. As NCCS notes, “it ultimately means that you are taking responsibility and assuming some control of your life circumstances with cancer.” It is about empowering yourself and working with your health care team as an active and questioning partner, not a passive recipient of care. Shared responsibility for your care can enhance your physical, emotional, and mental well-being.

Cancer and its treatment can make you feel that you have no or little control over your life. Being an advocate for yourself can help you regain some of that lost control, build confidence that you can face challenges that seem overwhelming, connect with others, improve the quality of your life, and potentially make a difference in the lives of other cancer patients in your community and beyond. In short, rather than sinking into a helpless and hopeless hollow, self-advocacy can help you climb to a more hopeful and active perch.

Who is a Cancer Advocate? You are!

Just by participating in the Providence Regional Cancer System blog, you are taking an active step to become an informed and communicative decision-maker throughout the cancer journey.

Next steps? Check out the links below:

• NCCS Self- Advocacy: A Cancer Survivor’s Handbook
  This is a fantastic resource that includes the Cancer Survivors’ Bill of Rights and other great information on cancer advocacy.
• NCCS Cancer Survival Toolbox®
  The Cancer Survival Toolbox® is a free, self-learning audio program that has been developed by leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness.
• Facing Forward: Making a Difference in Cancer (National Cancer Institute)
  If you feel ready to give back to others, this is a great resource on how to get started. 
• Saving Lives Through Advocacy (American Cancer Society) 

Cancer and pain: It's okay to ask for help

Unfortunately, pain in cancer patients is very common and affects most aspects of an individual’s life. But would it surprise you to know that cancer pain is severely under-treated in patients?

Research shows this could be for a number of reasons:

• As doctors, we sometimes focus all our energy on treating the disease and lose sight of controlling the pain along the way
• Patients often fail to talk to their doctors about their pain, falsely believing that some amount of suffering “goes with the territory”
• Patients and doctors are often hesitant to use morphine and other opiods for pain control, fearing addiction, when in reality patients being treated for cancer rarely form such an addiction.

The good news is, we believe 90% of chronic cancer pain can be treated with drug AND non-drug therapies. Source.

First and foremost, you are the only one who knows what your pain feels like. How you communicate your pain is the single most important factor in treating it.

This means, you must work with your care team to explain what is bothering you and exactly how it is bothering you. I recommend keeping a pain journal to help track anything that may be causing your discomfort. Controlling your pain is vital in maintaining your strength, emotionally and physically.

Pain can affect:

• Your sleep quality and your ability to perform daily activities
• Your mood and coping abilities
• Your relationships with others around you, including your social support system
• Your spiritual or religious beliefs

If you experience a new onset of pain, or sudden change of your chronic pain, call or see your doctor immediately.

You might also like:

• You don't have to put up with cancer-related fatigue
• Integrative care basics and what others are saying
• What is palliative care? Life-enhancing, supportive care
• Lymphedema prevention strategies

4 pitfalls to avoid when researching on the internet

The internet is a massive resource for health information, but, it’s also the most easily edited and the least policed. Anyone can publish a “scientific study” or “scholarly journal article” online.

In fact, you could probably search for and diagnose your symptoms with google and then figure out how to operate using youtube. (We don’t recommend that by the way).

Before you fall into the overwhelming wealth of information make sure you can answer these four questions:

1. Why are you searching?
   Are you looking for facts or opinions? Information to help make your medical decision or just a familiar story to relate with?
2. Is your source credible?
   The importance of credibility ties into the first question of why you’re searching for medical information. If you’re looking for medical treatment options then you will most certainly want to make sure the information you are reading comes from a reputable institution. If you’re looking for others who may share a story similar to yours you may care less about where the information originates from, that is up to you to decide.
   Consider: The American Cancer Society, The American Cancer Institute of Research, National Cancer Institute and The American Association for Cancer Research.
3. When was the study/story published?
   In the medical field, especially specific to cancer, it seems as though news is continually changing/growing. If you are referencing a source from the 1970s you may be setting yourself up for “old information.” Be sure to check the date the study was published and if any follow-up studies have been done.
4. Are you comparing “apples to apples”?
   If you are reading an article about a new study that found success with a particular treatment make sure that the patients included in the study have your “specific type of cancer.” For more information see Dr. Whitten's recent post on "The Pathologist's role in cancer diagnosis and care"

Remember, you are your biggest patient advocate. If you find something online that you’re curious about, talk with your doctor.

The Pathologist’s role in cancer diagnosis and care

Pathologists are physicians who specialize in diagnosing and characterizing disease through scientific analysis of a patient’s organs, tissue, blood and body fluids.

A pathologist is responsible for a person’s initial cancer diagnosis including:

• Exactly what type it is
• What its particular features are (contained in the pathology report)
• What the prognosis is

Pathologists also manage hospitals and private laboratories. Occasionally we do autopsies but most pathologists are not forensic pathologists, like those portrayed on television shows such as CSI.

The life changing diagnosis of cancer usually starts with symptoms that a primary care provider suspects may be cancer, such as a lump or tumor, weight loss, severe fatigue, blood in the stool, changed blood test results, etc. A biopsy of the tumor is taken by a surgeon or radiologist and sent to the pathologist who analyzes it and decides (through a series of scientific tests) what it is.

Understanding your pathology report
The pathology report contains several things:

• The overall diagnosis (e.g., breast carcinoma, infiltrating ductal type)
• Descriptions of all features including:
    * Subtype
    * Degree of spread
    * Invasion of tumor into blood or lymphatic vessels
    * Growth rate
    * Grade or how much the tumor resembles its normal tissue of origin, stage, etc.

These detailed reports are written primarily for other doctors (which is why pathologists are sometimes called the Doctor’s Doctor). However, our group of CellNetix pathologists are happy to take calls from patients to help them understand the reports. In fact, I highly recommend patients ask their primary healthcare provider for a copy of their pathology report.

Every line item in that report is critical for your personalized treatment plan. In fact, more than 70 percent of the decisions made about your health care involve pathology and your lab report. Source. Knowing the details of the diagnosis helps when talking to other healthcare providers, family and friends and when searching the internet for information.

CellNetix office phone numbers:

• Aberdeen 360.537.0562
• Centralia 360.827.6800
• Olympia 360.493.7330
• Seattle 206.386.2676

Part 3: I gave consent, now what?

Once you have given your consent you will begin the screening procedures.

These may include:

• Physical exams
• Laboratory tests
• CT scans
• X-rays, etc.

If even one of the results obtained from these procedures does not meet the specific criteria identified in your clinical trial you may no longer be eligible to participate. If all criteria are met, however, you can be enrolled.

After you are enrolled you will be randomly assigned to a patient group. We use a computer program ensuring that your group assignment is not affected by anything but a random number generator. Once you are assigned to a group you are officially considered “randomized” in the clinical trial.

The length of time you remain in the clinical trial will vary. Of course our hope is that you will respond to the treatment and have exceptional results but with a clinical trial you must always be open minded. Reasons for removal from a clinical trail include:

• Worsening of the cancer
• Intolerable side effects
• Non-compliance
• Patient’s choice (At any given time during any clinical trial you may choose to go off protocol)

What happens if I am removed/remove myself from a clinical trial?
Your treating physician will find a new treatment that is appropriate for you or may even look for another clinical trial. The research coordinators will continue to collect data from you for your lifetime. This is how survival outcomes and quality of life statistics are gathered. Approximately every two months an auditor visits our research department and reviews all documentation on every study and every patient to ensure that all Federal regulations are being met.

Clinical research trials are not a matter we take lightly. If you ever have questions regarding your participation in a trial talk with your doctor.

You might also like:

• Part 1: Why we belive in research studies
• Part 2: How we enroll patients into clinical trials