Knowledge is Power -- Tips to Achieving Your Best Possible Outcome When Facing Cancer

Last Updated: Wednesday, November 16, 2016


Nobody wants to be diagnosed with any illness- much less cancer. But, knowing the most effective tools for dealing with this type of news can start you off on the right foot in beating the disease. Cancer comes in all different types and levels of severity. Some forms are relatively easy to treat. Others, require a more robust and perhaps hard-fought effort. But, with any diagnosis knowledge is power. The more you know, the more likely you will obtain the best possible outcome for yourself and your family. Not every piece of advice will bear out. Not every statistic will apply. Some doctors are conservative in their approaches. Some are radical. Some want to avoid pain. Others want to defeat the disease at all cost. It is absolutely crucial to do your homework and understand your options. This is the only way to ensure that you receive the care most appropriate for your situation. The doctor, hospital, and treatment plan you choose can be the difference between life and death.

Often times, a diagnosis will come based on the results of a pathology report. During the days leading up to receiving the results, you are likely to be anxious and panic. But, try to direct some of that energy into preparing instead. Expect and hope for the best, but be ready for news that is less than perfect. Take the time to write out a list of preliminary questions for the doctor when he/she delivers the information. Trust me- you will not lament the time spent if the cells turn out to be benign- you will be too busy feeling grateful. The questions will be basic at first, but they will ensure that you leave the conversation with facts and next steps rather than sheer fear and confusion. You may even have questions in the event the news is good. Some sample questions might include:
    1. How do I obtain a copy of my pathology report?---obtaining this document from the get-go is a crucial step in receiving qualified opinions and optimal care.

    2. Now that we that we know the cells are malignant, do you need to run more comprehensive tests on them---i.e. to search for genetic mutations, degree of differentiation, etc.? Might the results of these tests change your treatment recommendation?

    3. Given that the cells are benign, what is your opinion as to what is really going on here? What has caused this (mass/unusual bloodwork/etc.)? What, if anything, do we need to do about it?

    4. What is your initial recommendation in terms of a treatment plan? Is this standard protocol? Are there other options of which you are aware that I should look into?

    5. How aggressive does the cancer appear to be based on the cell composition? Is there an exigency in terms of starting treatment? If I want to get a second opinion, what does my timetable look like?

    6. What is the process for requesting that my pathology slides be transferred for a second review if I decide I would like that done before the start of treatment?

    7. What is the best way to reach you with my follow up questions once I digest this information? Is there an e-mail address? Patient portal? Good phone number?

    8. If you are not a specialist in this type of cancer, is there somebody you recommend? Are you able to expedite an appointment with that doctor for me?

    9. If you are a specialist in this cancer type, how many cases like mine have you treated? Would you be willing to ask previous patients if they will speak to me about their experiences and what I should expect?

    10. Going forward, how can I keep an accurate file at home of my important medical records? Will they be on a patient portal somewhere? What about the records that do not usually make it to the portal such as doctors'/oncologists' notes? Is there a process by which I can obtain those in a timely fashion?

If possible, it is a good idea to have someone with you at the appointment or on the phone call when receiving your pathology results. This is true both from the perspective of emotional support and accuracy of information retention. Even the sharpest of minds tends to malfunction under the stress of first hearing a cancer diagnosis. It is not always easy to receive one-on-one consultation time with your doctor, so you want to make sure it is used effectively. Have someone else (whom you trust) listen and absorb the information as well. Ask them to take notes or even record the conversation (if the doctor allows it).

When you get home, sign up for Google alerts or other bulletins that will start notifying you about any newsworthy updates regarding your diagnosis. This is the first and easiest step in becoming knowledgeable about your condition. The more you know about what you are facing, the more likely you will find the right doctor and the right treatment to obtain your best possible outcome.

You can also use this time to begin planting the seeds for finding a proper second opinion (a topic discussed in much more detail in a future submission). Start researching the US News and World Report Best Hospitals relevant to your condition. This search should be not just for the best cancer hospitals but also for the hospitals with the most accolades in treating the part of the body affected. For example, if you have been diagnosed with lung cancer, you will want to know where the top pulmonary doctors in the country are located. If you know that travel is going to be a problem, repeat these searches limiting the parameters to just your state or local area.

You should also do some basic research into respected journal publications addressing your condition and make note of the authors of each submission. When searching for articles or other publications regarding your diagnosis, it is helpful to be as specific as possible. For example, there are over sixty types of non-hodgkins lymphoma. The sub-type you exhibit will determine the most effective treatment for your disease. You will be most efficient in your research if you zero in on the most relevant facts and opinions. Some doctors devote their entire career to one specific subtype of one specific type of cancer. If that doctor exists for your condition, you want to make sure you find him/her.

During this initial post-diagnosis period, it is also a good idea to call your medical insurance company as soon as possible. You should alert them to your diagnosis and request that a full copy of your policy be made available to you in the event you do not already have one in your possession. You should ask some preliminary questions including:

    1. What is my deductible? How much of it have I already met?

    2. What percentage of my medical bills is covered in network before and after my deductible is met?

    3. Which doctors and hospitals are located in my coverage network?

    4. What is my coverage if I travel outside of my network for care?

    5. Under what circumstances am I entitled to reimbursement for travel and lodging related to my care?

    6. Is there a clause in my policy to deal with a situation where there is no qualified doctor in my network?

    7. Are you affiliated with any specific cancer education networks, cancer information publications, etc.?

    8. Under what circumstances do you anticipate that I personally (as opposed to my physician) will have to take action PRIOR to getting treatment in order to receive my full benefits?

    9. What is the best number to call if I have questions about my coverage?

    10. What coverage do I have for procedures that are considered experimental? How does my policy define experimental treatment?

    11. Does my policy cover the cost of second opinion appointments? What about a third opinion if necessary?

    12. How can I obtain a HIPAA privacy release form so that family members and/or friends can communicate with you on my behalf?

This last question is an important one. Dealing with a cancer diagnosis is a marathon not a sprint. As time goes on, you will be emotionally and physically spent. It will be invaluable to delegate the job of communicating with the insurance company to those around you who want to help. However, strict privacy laws are in place which prevent the insurance companies from discussing your case with any unauthorized person. By filing a HIPAA privacy release form at the start, you can avoid any hiccups on this front later on. There are a few specific insurance issues that are common when seeking coverage for cancer treatments. I will address each of these in great detail in a later entry.

Finally, identify any national or local organizations that are centered on your diagnosis and avail yourself of the information and resources they provide. In some cases, these organizations will provide free or subsidized services to test tumors for genetic mutations or try, in other ways, to match a patient with his/her most tailored treatment options. For example, pancreatic cancer patients are eligible, through the organization PANCAN to submit tumor samples to a molecular evaluation company at minimal cost. This company then runs the sample through an extensive database of treatment options to try to locate the most promising course for the patient. If such a program exists for you, it may be crucial to obtain a sample from your biopsy sample to avoid an additional procedure. It is imperative to initiate this process as soon after the initial biopsy as possible.

As a dear friend once told me, receiving a cancer diagnosis is much like embarking on a roller coaster ride. There will be ups and downs along the way. There will be good days and bad ones. There will be sheer fear as you anticipate a drop. There will be exhilaration as you begin to soar upwards again. Some things will be in your control, and some things will not. You must know when to hold on tight and when to let your arms soar into the air with the knowledge that you have buckled in and done all you can to sustain the ride. Just know that there are many people out there----family, friends, co-workers, neighbors, charities, spiritual leaders, past patients, doctors, and therapists---who will hold your hand. I recommend you let them.