Wrapping your head around the fact that you or a loved one has cancer is no easy task. After my 46-year-old husband was diagnosed with a very rare and aggressive cancer in 2009, we were in a state of shock and paralyzed with fear. Nevertheless, we had to research treatment options, meet with doctors, schedule multiple surgeries, and start chemotherapy all in a matter of days. Talk about overwhelming! Below are six things I wish we had known at the beginning of our cancer journey:
1. Always, always get a second opinion.
No ifs, ands or buts about it: When it comes to cancer, two heads are better than one. Second opinions will either confirm what you've already been told or present different options to weigh. Regardless, second opinions can help to reduce the chance of misdiagnosis and provide greater peace of mind. If the two opinions you've received differ, get a third one. Remember, it is a patient's prerogative to speak with as many professionals as he or she chooses. If you've been diagnosed with a rare cancer, I urge you to also seek recommendations from doctors who specialize in that particular cancer.
2. Be choosey.
Being best friends with your doctor is not required. You don't even have to like your doctor. But you do have to trust their care and feel comfortable talking to them about anything related to your health. If you don't, find a new doctor immediately. For us it was also important that our doctor be both a realist and an optimist. Eventually, we left our first oncologist for these reasons.
3. Talk to your doctor about molecular profiling.
Two people with the same cancer can and do respond differently to the exact same treatment regimens. Why? Because each person's cancer is unique. Identifying unique genes, proteins and other molecules (called cancer biomarkers) can provide information about how your particular cancer functions and can be used to help identify potential treatment options. Molecular profiling is especially key if your doctor is choosing between multiple recommended treatments, or if your cancer is particularly aggressive or rare or has limited treatment options, or if your first-line treatment isn't working. To learn more, visit MyCancer.com and IsMyCancerDifferent.com. Both sites have loads of helpful information on personalizing cancer treatments.
4. Visit a dentist prior to starting cancer treatments.
It's important to see a dentist who really understands cancer before beginning treatment or as soon after diagnosis as possible. Chemotherapy, radiation therapy and immunosuppressive treatments like bone marrow transplants and stem cell transplants can exacerbate existing dental and oral problems, as well as create new painful and potentially dangerous ones like mouth sores, ulcers, inflections, bleeding, etc. Dentists who are knowledgeable about cancer and its effects on oral health can help minimize these risks before they pose serious problems.
5. Understand the goal of your cancer treatment.
Make no assumptions when it comes to your health or treatment plan. Not all treatments for cancer are given with the intent to cure. Treatment can also be given to help prevent disease recurrence, to minimize symptoms of disease, or to simply prolong survival. Knowing the goal of your particular cancer treatment and the potential risks associated with that treatment will enable you to make the most informed decisions possible about your care.
6. If you don't know where to turn for help, talk to an oncology navigator.
Until recently, I had no idea there existed professionals who can help a cancer patient navigate their way through this diagnosis. Oncology navigators are skilled in helping cancer patients overcome obstacles to treatment (financial challenges, insurance and employment issues, managing daily life, evaluating treatment options, etc.). They work to help patients get the best care possible.
Where can you find an oncology navigator? Some hospitals and private oncology practices have an oncology navigator on staff. Another option is the LIVESTRONG Cancer Navigation Center, which provides free one-on-one support to anyone touched by cancer, regardless of age or type of cancer. The National Coalition of Oncology Nurse Navigators can also help connect patients to a free navigator in their area. Navigators are very helpful in uncovering resources that you may not know about otherwise.
Although I have no regrets in how we managed Alan's care, I do wish we had fully understood the extent of what we were dealing with at the beginning of our cancer journey. I wish we had understood the importance of the six tips I wrote about above. If you know someone who has been diagnosed with cancer, please pass this article on to them. Knowledge is power... please share the power!
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