Have you just received a cancer diagnosis? Aren’t sure where to start? Here are 5 things to avoid after a cancer diagnosis:

1. Don’t Engage in Haphazard Google Searches

Most of us will admit that our knee-jerk reaction after learning of a medical diagnosis is to search the internet. Some of us are sorry we did.   Others are given a sense of control. 

Amassing information often helps us feel proactive and in control of a very out-of-control situation. Frequently, it is the family or friends of patients who dig into the data to provide support or assistance. 

I  feel the Internet can be a valuable resource. However, I am also aware that it can also be a major source of fear, stress, and anxiety.   

Try typing “cancer” into your search bar, and you will find it yields 3,740,000,000  results. “Cancer prognosis” yields close to 3 billion results.   With all of that data, there is plenty to be fearful and anxious about. 

I recognize the choice to dive into the Internet is a personal one. However, you should avoid doing so haphazardly. If you choose to dig in, I suggest you do so with the guidance and expertise of someone who can lead you to vetted resources, interpret, and manage the data to make the most of your findings. 

If you’re interested, read our blog covering 5 questions to answer about your cancer before searching the internet.

2. Don’t Take On Someone Else’s Story

Unfortunately, cancer will affect 1 in 3 Americans in their lifetime. That means almost all of us will know someone who will have a direct or indirect experience with cancer.  

It is human nature to want to “share” our experiences, and we do so for a variety of reasons.   

I remember the myriad of strangers who wanted to share their “birth stories” with me during my pregnancy (whether I wanted to hear them or not).  Some of them were pretty horrific. 

However, the point is this: even if someone has been given the same diagnosis (lung cancer, for example) it can be an entirely different disease from person to person. 

In 2003, the completion of the Human Genome Project marked a dramatic shift in the understanding of cancer and other diseases. Researchers mapped the entire human genetic code and discovered that every human cell is made up of 20,000 to 30,000 genes.  

Each of us has the same set of approximately 20,000 genes, with slight variations in each gene. These variations create individual differences among people.  For example, we all have a gene for hair color, however, slight variations of the gene dictate redhead or brunette.

The human body contains 50 trillion cells. Within the cells are DNA, or the instructions for how the cell functions. Genes are found in the DNA of the cell, and they provide that cell’s  “recipe” for how quickly it grows, how often it divides, and how long it lives. This recipe provides very specific instructions to ensure the cell remains healthy and functions correctly. 

 As a cell goes through the natural cell cycle, it makes copies of its recipe during cell division. With each division of the cell the probability of a mistake increases. As you hand recipes down from generation to generation, each transcription of the recipe poses a greater risk for mistakes and/or alterations of the end product. 

Mistakes in the cell’s recipe are called mutations. A disruption in the normal cell cycle (cell growth, division, and death) can turn healthy cells into precancerous cells, which sometimes multiply and evolve into cancer cells. Cancer cells are rogue cells growing out of control.

 All cancers begin with a mistake in the recipe when one or more genes in a cell become mutated.

Your cancer is unique. No one’s cancer is exactly alike. (Even if two people both have lung cancer.) 

3. Don’t Face Your Cancer Diagnosis Alone 

Another thing to avoid after a cancer diagnosis is isolationism. Now is not the time for multi-tasking. 

A cancer diagnosis comes with a wide variety of physical, emotional, and logistical challenges. Even the most self-sufficient individual can quickly become overwhelmed. This is not the time to try to do it all yourself. 

Research and coordination of care are time-consuming, and they compound the existing stress and anxieties brought on by cancer. If this seems overwhelming to you, there is help. There are national and local resources available to help you meet your specific challenges in the following areas: 

• General Information. Ask your physician for vetted sources of information about your diagnosis.
• Emotional Support. It is not a sign of weakness to seek the support of patient support groups, individual counseling, or peer-to-peer support. Such resources can assist you in managing the loneliness, fear, or anxiety that often accompanies cancer.
• Financial Assistance. When facing a cancer diagnosis, money may be the last thing on your mind. However, a 2011 study by Duke University showed the average cancer patient in the U.S. pays over $8,500 a year in out-of-pocket medical expenses (not covered by insurance). Cancer is an expensive illness, even with insurance. There are resources out there to assist you in managing the cost of cancer.
• Home Care. There is a wide range of health and social services that can be administered in the home.  Engaging the expertise of someone with insights into the various options is very helpful in navigating the options best suited for you.

4. Don’t Agree To Things That You Don’t Understand

Your initial appointment with your specialists will be the most amount of time you will have with them throughout your treatment. 

After your initial visit, the average amount of time your physician spends face-to-face with you will be 8 minutes. (Yes, this is about the same amount of time it takes to grab a latte or order something on Amazon.)  

So how do you ensure these precious moments with your doctor will be used wisely?  Here are some tips for maximizing your time with your doctor:

• Before you go. Gather the questions you will need to have the answers to make a confident decision. Prioritize your decision-making in order of importance. Identify someone to go with you as a second set of eyes/ears. Determine what you want to get out of the appointment. What is your objective? 
• During your appointment. Ask questions for clarity when things are not clear. Take notes or record the consultation to refer to later. Make sure to recap what you heard the doctor say and the next steps you are to take. Do not leave until you understand your diagnosis, what your options are, and what treatment entails. Continue to ask the clinician to explain in terms you understand until you have a clear picture of what is being presented to you. If you require additional tests, consults, or second opinions, ask if the office will assist you in scheduling those appointments. Remember that you do not have to continue your care with the “referral” that was given to you upon diagnosis. Most insurances will cover the cost of a “second opinion.” 

5. Don’t Be Afraid To Share Your Wishes With Others

Advance care planning is not a topic that most of us address until it becomes necessary. (And then, it is often too late.) At any age, a medical crisis could render us too ill to make our own healthcare decisions.

I know for me, it felt like I was jinxing it. I thought that if I planned for the worst, then somehow I was taunting fate for it to happen.

The reality is, we never know when an accident or a medical crisis will occur. Even if we aren’t currently sick, planning for our future health care decisions ensures that we will receive the care we want, especially if we are unable to speak for ourselves.

Planning for your future healthcare is something we all should do regardless of our current health status.

The reality is that having the conversation does not expedite or ensure the outcome. Not only that, but it makes things less chaotic, should physicians or family members ever be put in the position to make decisions on our behalf.

If you’re facing the burden of a cancer diagnosis, know that you’re not alone. Contact us today, and we can schedule a complimentary get-to-know-you call. Hopefully, we’ll be a fit.

Most of my clients admit to conducting a knee-jerk search of the internet as soon as they receive a cancer diagnosis. For some, they were sorry they did. For others, it provided a sense of control.

Amassing information often helps us feel as though we are being proactive and taking control of a very out-of-control situation. Frequently, it is the family or friends of clients who dig into the data on their behalf, in an effort to provide support or assistance. 

Maybe you’ve heard from friends, family — or even your healthcare provider — to avoid the internet. 

Personally, I feel that the internet can be a valuable resource. However, I am also aware that it can be a major source of fear, stress, and anxiety for many.   

To further illustrate what I’m talking about, go ahead and type “cancer” into your search bar. It will yield 3,740,000,000  results. On a similar note, “cancer prognosis” will yield close to 3 billion results. With that quantity of data, there is plenty to be fearful and anxious about.

I fully recognize that the choice to dive into the internet is a personal one. However, if my clients want to dig in, I will help guide them to vetted resources and interpret/manage the data that they find.

If you’re interested in using this powerful tool to gain a better understanding of your situation, there are a few tips I’d like to offer for your consideration. 

Before embarking on your internet search, there are some questions you should ask your doctor about your cancer. The answers to these questions will help you refine your search, giving you a better chance of uncovering relevant information:

What type of cancer do you have?  What grade and stage? 

Cancer is actually more than 200 diseases with a common characteristic. That characteristic is simply a healthy cell that has gone rogue. In a healthy body, cells grow and divide in a controlled fashion, replacing old, damaged, or dead cells. This process is part of the normal, regulated cell growth. 

Cancer occurs when this natural process is disrupted. When cells ignore the body’s signal to stop, or the signal to stop is not properly applied, cells continue to grow and multiply, ultimately forming tumors in the organs, tissues, or blood. Cells that grow out of control are called malignant, and they are the result of a complex process (not merely a single event).

So, the first thing you need to know is what type of cancer you have and what stage it is in.  

Your doctor can give you this information, and it might also be found in your pathology report. A pathology report is a medical document that is written by a pathologist (a physician that is trained in evaluating cells, tissues, and organs). The report provides your specific diagnosis, based on the examination of a tissue sample taken from your tumor during a biopsy. 

Cancers are classified based on the organ or type of cell in which they originate:

•     Carcinomas are cancers originating on the skin or tissues lining internal organs.
•     Sarcomas are cancers occurring in the bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue.
•     Leukemias are cancers that occur in cells in the blood or bone marrow.
•     Lymphomas are cancers occurring in the cells of the immune system and lymphatic system.
•     Central nervous system cancers occur in the cells of the brain and spinal cord.

Once you know the kind of cancer that you have, its grade, and its stage, you are on your way to narrowing your search. 

As helpful as this information is, it is still fairly broad.  For example, a search for “colon cancer stage 3” produces a daunting  4.5 million results, and “breast cancer stage 1” yields over a billion. 

The next question provides another layer of information that helps to differentiate your search. 

Do you have biomarker or molecular testing information for your tumor? 

In 2003, the completion of the Human Genome Project marked a dramatic shift in the understanding of cancer and other diseases. Researchers mapped the entire human genetic code and discovered that every human cell is made up of 20,000 to 30,000 genes.  

Each of us has the same set of approximately 20,000 genes, with only slight variations creating individual differences among people. For example, we all have a gene for hair color, however, slight variations of the gene dictate redhead or brunette.

The human body contains 50 trillion cells. Contained within cells are DNA, or the instructions for how a cell functions. Genes are found in the DNA of the cell and tell that cell how quickly to grow, how often to divide, and how long to live. Genes provide very specific instructions to ensure the cell remains healthy and functions properly.  

As a cell goes through its natural cell cycle, it makes copies of its genetic code during cell division. However, with each cell division, the probability of a mistake increases. Just like handing recipes down from generation to generation, every transcription of the code increases the chance of a mistake, which would alter the end product.

Such mistakes are called mutations, which are disruptions in the normal routine of cell growth, division, and death. Mutations can turn healthy cells into precancerous cells, which sometimes multiply and evolve into cancer cells (cells that grow out of control).

All cancers begin with a mistake in the code, when one or more genes in a cell become mutated.

Your cancer is unique. It is in the genes. No one’s cancer is exactly alike (even if two people both have lung cancer). 

Although all cancers share the commonality of cells growing out of control, the reasons for cell growth vary depending on several factors.  These are the two basic types of genetic mutations that cause cancer:

• Sporadic gene mutations. These are defects in code that are acquired, making them the most common cause of cancer. They are a result of damaged genes occurring during one’s lifetime, and they are not hereditary. Sun exposure, tobacco use, viruses, and age are all examples of environmental factors associated with sporadic mutations. Next-generation sequencing and molecular profiling of the tumor are both tests that identify sporadic gene mutations of the tumor.
• Inherited gene mutations. These changes in the code are passed from parent to child, and they are less common than sporadic mutations. Inherited gene mutations make up only 5%-10% of all cancer cases.

Although complex, cancer is common. Therefore, it’s no surprise that many families have at least a few members who have had cancer. Although it may seem like certain types of cancer “run in the family,” most cancers are not inherited.

Genetic testing is performed to identify inherited gene mutations. 

It is important to note that not all cancers are linked to a specific gene. Scientists are continuing to discover new genes and to examine the effect that genetic changes have on the development of cancer (making it a dynamic area of cancer research).

The results of your individual genomic and/or genetic studies will help your clinicians determine which treatment options are best for your situation. Not only that, but they will help you conduct a more specific internet query.  

Although there are many commonalities within cancer, we now know that there are slight variations within each individual case. For this reason, your doctor will speak in statistics and generalities that are based on both the current data and historical perspective.  

It is important to remember that your journey is your own and, while you may travel a well-worn path, each footfall is uniquely yours. Be wary of comparing your situation to those who may have a “similar” diagnosis. 

The next piece of information to gather involves learning about the treatments available to you. 

What are my treatment options? 

There are 3 main ways cancer is treated: surgery, radiation, and systemic treatment (treatments spread throughout the body). Examples of systemic treatment are chemotherapy, immunotherapy, and targeted therapy.

Your cancer may be eligible for one or all three. Some tumors respond well to radiation while others do not, and the stage of a tumor often dictates whether surgery is an option or not. 

A person’s physical condition, their tumor’s genomic profile, their genetic history, the pathology of their tumor, and many other factors go into crafting an individual’s treatment plan. Therefore, be cautious of how you interpret the stories and information shared by others in internet chat rooms.    

Your physician can recommend trusted websites that are designed to provide educational materials about specific therapies and treatments. 

How do I manage symptoms and side effects of treatment? 

A general search for the answer to this question will yield a vast number of results. Asking your healthcare provider for more specific information regarding a treatment-related side effect will help focus your research.  

For example, a search for “chemotherapy-induced neuropathy” yields 4 million results, while searching “acupuncture for cisplatin-based neuropathy” yields only 71,000.

Is this a trusted resource? 

Just because it’s on the internet doesn’t mean it is true. To help you critically evaluate the information that you find, ask yourself the following questions:

• Who said it? — The author’s name should be easy to find and they should have experience in the subject area they are writing about.  If you can’t find who wrote it, or any information about the author’s experience or background, be wary of the information.
• When did they say it? Is the information current? — Cancer research is dynamic and has rapidly developed over the last decade. Be sure that the information is not out of date. If a date for the information is not given, be suspicious
• How did they know? — Is the information based on the research of many or is it simply someone’s personal experience or opinion?   Does the information seem reasonable based on what you know or have read elsewhere? If there are no other sources with the same results or information and it seems too good to be true, it may be.

If applying these guidelines to your internet search leaves you even more confused, frustrated, or anxious, contact us for a complimentary call to see how we can help. 

Download a glossary of “cancer terms” to assist you in interpreting the data you find.