You Need To Be Your Own Best Advocate!

Speak Up and Be Heard

     Being your own advocate as a cancer patient means taking an active and informed role in your healthcare journey. It means expressing your concerns and preferences to your healthcare team to ensure you receive the best possible care and support during your cancer diagnosis and treatment.

     Early on I found out how important it was to be actively involved and participating in my healthcare decisions. When first diagnosed I knew virtually nothing about my type of leukemia. I spent many hours searching the internet for relevant information to help me understand what I was up against and what the latest recommended treatment options were. I joined an online CLL support group and I learned from other CLLer's (Chronic lymphocytic leukemia) who were in different stages of their cancer.

     I learned that most leukemia/cancer patients have low vitamin D levels. I (advocated) brought this up to my primary doctor to get tested. The results indicated I had a very low vitamin D level, and I was put on a prescription level dose to boost my level back into the normal range.

     There have been times I have said no to certain procedures (advocate) such as frequent x-rays to determine the accumulation of leukemia cells in my abdomen. I discovered these were not necessary unless I had other symptoms or abdominal discomfort. I was concerned about the effect of excessive x-rays would have on my already weakened immune system.

     After experiencing an extremely painful bone marrow biopsy I (advocated) any future ones to be done under general anesthesia. Lesson learned, never again.

     My first year with leukemia I quickly maxed out my insurance deductible and my total medical bill soared. My cancer related expenses added up quickly and definitely caused me a lot of mental stress. I learned to (advocate) request all doctors, tests, and treatments to be from the same healthcare provider so I wouldn't get swamped with medical bills coming from all directions. I was able to work out a monthly payment plan of which I am still paying off today.

     I also had two bills go into collections because I thought I would receive just one bill for my healthcare services since I only went to one provider. Just because you see one healthcare provider doesn't mean all the other associated cancer bills will come from them. I was so naive. It took me several years to restore my credit. Now I know.  So based on my experiences I always ask, "Will my insurance cover this?". (advocate)

Note:  Starting in 2022 Congress enacted the "No Surprises Act" to protect consumers from surprise medical bills.  This is something all cancer patients should be aware of.

• No Surprises:  Understand your rights against surprise medical bills.
• What is a "surprise medical bill" and what should I know about the No Surprises Act?

     The No Surprises Act protects people covered under group and individual health plans from receiving surprise medical bills when they receive most emergency services, non-emergency services from out-of-network providers at in-network facilities, and services from out-of-network air ambulance service providers. What took them so long to pass something like this to protect patients?  Please, take the time and read the links above so you can become a better-informed cancer patient, it may save you money.

     My healthcare team stepped up to the plate when I asked (advocated) about assistance and additional resources to pay for my medical bills. They assisted me in applying for a grant with the Leukemia Lymphoma Society. This money went directly to my healthcare provider.  Ask your healthcare team or hospital social worker if there are any other outside organizations that can help you manage your medical and other related expenses.  Believe me, they want to get paid, and they should be in the "know" where you can turn to for additional help.

     They also came to my rescue when I relapsed, and my insurance company refused to pay for my doctor recommended treatment.  (I'm really starting to dislike insurance companies and the loopholes or dumbass reasons they use to deny coverage which puts people's lives at stake).  I am grateful my medical team (advocated) on my behalf, and I was able to receive the treatment free through the drug company's patient assistance program.

     These are just some examples I experienced of the importance of becoming your own best advocate. It's tough enough managing a cancer diagnosis without the additional burden of financial stress as you try and figure out ways to manage your healthcare bills. Does this affect your mental wellbeing? You bet it does! I've had many sleepless nights worrying about the cost of my cancer care and how to manage it.  Do not hesitate to ask for help from your medical team because they may have resources to assist you that you may not be aware of.

     I love my healthcare team (doctors, nurses, and social workers) for assisting me in solving some of these issues. They have been fantastic! I've learned to be proactive in my treatment plan. This approach has definitely helped me become an empowered cancer patient.

     Remember this, there is no right or wrong way to live with cancer. Everyone dealing with cancer has a different situation.  I've learned patients who have the same cancer may dealing with an entirely different set of circumstances including financial.  I just like to stress you have a right for your voice to be heard and for you to stick up for yourself when the big bully called cancer comes knocking at your door.

Here are some things you should consider to being your own best advocate:

1. Education: Learn about your specific type of cancer, its stage, treatment options, and potential side effects. Understanding your condition empowers you to make informed decisions.
2. Communication: Ask questions, seek clarification, and express your concerns and preferences. Work with your medical team to make the best decisions for your individual situation.
3. Second opinions: Don't hesitate to seek a second opinion from another qualified oncologist or medical specialist. It can provide you with additional insights and confirm the recommended treatment plan.
4. Health insurance and finances: Understand your health insurance coverage, including deductibles and out-of-pocket expenses. Advocate for yourself by seeking financial assistance or counseling, if necessary, with your medical team.  Most healthcare facilities have social workers to assist you for things you do not understand.
5. Treatment options: Understand the various treatment options available, including potential clinical trials. Work with your healthcare team to explore all available avenues and make decisions important to you.
6. Side effects and symptom management: Be proactive in managing side effects and symptoms related to your treatment. Report any discomfort or issues to your healthcare team promptly so that they can be addressed.
7. Support system: Join a support group for your particular cancer. They can provide emotional support and help you navigate the healthcare system.  You can learn from others who have walked the path you are on now.  Highly recommended.
8. Advance care planning: Consider discussing and documenting your healthcare preferences, such as end-of-life care, in advance care directives or living wills. This ensures your wishes are respected in case you're unable to make decisions in the future. This is important, do not put this off.
9. Emotional well-being: Pay attention to your emotional and psychological well-being. Seek counseling or support groups if you're experiencing emotional distress or anxiety related to your cancer diagnosis.
10. Self-care: Prioritize self-care, including maintaining a healthy lifestyle, eat a healthy diet, getting adequate rest, and managing stress. A strong physical and emotional state can better support your cancer treatment.