When people hear that my husband has survived for 6 years with stage IV non-small cell lung cancer they often ask me what our top cancer survivorship tip would be. So in honor of his 6th cancerversary, I have put together some of the best advice we have used and continue to use.
Cancer Survivorship Tip #1
I don’t mean that you should read articles filled with pseudoscience. You should find out exactly what kind of cancer you have and what the newest and older treatments for this cancer are. How can you expect this cancer to affect your life in the near future? One of your best resources will be your oncology team. That brings us to the next tip…
Cancer Survivorship Tip #2
Build a Trusting Relationship with your Oncology Team
Don’t be afraid to ask questions. Your appointments are a time to check in with your doctor and to get any unanswered questions addressed. It’s helpful to write down these questions in advance. When you see your doctor, fire away. He or she will be glad to know what’s been happening with you since your last visit. As you doctor answers your questions, write down what he or she says. It’s easy to forget if it’s not written down. Better yet, bring your caregiver along so they can write everything down. Two sets of ears are better than one.
Also, be honest and open about medications you are taking (including over the counter meds like Tylenol or antacid) and symptoms you may be experiencing. Those details can have a big impact on your treatment. Some cancer treatments don’t work properly if you are also taking antacids, but your doctor can give you a special antacid that is safe to take with your treatment. Some symptoms are important indicators of whether or not you are getting too much treatment or that the treatment isn’t working and it’s time to change to something new.
Cancer Survivorship Tip #3
Don’t be afraid to get a second opinion
This is especially true if you don’t trust your oncologist for some reason. Check in with another clinic and see what they have to offer.Atn the beginning of my husband’s cancer journey, he visited the Mayo Clinic for a 2nd opinion. They told him he was already getting top notch treatment. This helped him feel more secure about the plan his oncologist had put together for him. Later on, when his oncologist ran out of options, she sent him back to the Mayo Clinic to be enrolled in a clinical trial. This opened up a new avenue of treatments to try. There is no room for ego in cancer treatment.
Cancer Survivorship Tip #4
Ask about Genome Testing
Checking for genetic mutations can help your doctor find targeted treatments for your specific cancer. These treatments are often more easily tolerated than traditional chemotherapy. Many are available in oral form, making them easier to take. By trying a treatment specially targeted for your mutation, you increase the likelihood of it working. That’s a win-win!
Also, get retested after a couple of years. This area of oncology is a rapidly changing one. New mutations are being discovered all the time, and with them, new targeted treatments are being developed.
Cancer Survivorship Tip #5
Don’t shun older treatments
Sometimes patients get discouraged when their only available option is an older, traditional chemotherapy. No doubt, this is a tough pill to swallow (or more accurately, a tough infusion to take), but this can also be the treatment that gives you extra time. That extra time might mean a new treatment becomes available. That’s what happened three years ago when my Tagrisso came on the market. The time a traditional chemotherapy gives you might also mean that a trial becomes available. That’s what happened recently for my husband. And even if neither of those happens, a traditional chemotherapy is often the ideal treatment option for a cancer patient. It could bring you into remission or treat your cancer altogether. Your doctor will be able to give tell you what to expect.
Cancer Survivorship Tip #6
Have a good support system in place—and use it.
This could include a primary caregiver, family, friends, online cancer support communities, your oncology care team, your faith community, long-distance support, and neighbors. A communication tool like CaringBridge is an ideal way to tell your loved ones what’s happening with you. You can help coordinate help via the planner. You can schedule more than just meals with it. Consider using the planner to ask for help with errands and rides to the doctor as well. It is as useful as you allow it to be. Family and friends wish more than anything that they could cure your cancer. Since they can’t, let them do the next best thing by allowing them to help you and your family out during this difficult time.
Cancer Survivorship Tip #7
It’s okay to change direction in your journey
We often hear the message that you have to stay strong and fight. Sometimes, the thing that requires the greatest amount of strength is knowing when it’s time to take the gloves off. This is not a failure. This is another part of your journey. It is a time of inner healing and relational healing as you pull your loved ones close and say the things that are often left unsaid until the end of a life. In the United States, we are so focused on how to live well. One thing we don’t teach in our society is how to die well. There is an art to it. It takes a community. Only you know when it’s time to transition from one leg of the journey to the next. Hospice is the ideal way to make this transition. It’s a team approach to end of life care. It isn’t just for the last week of your life. Anyone with a life expectancy of 6 months or less qualifies for hospice care. It has been proven that patients on hospice actually live longer, more comfortable lives than their non-hospice counterparts.
Cancer Survivorship Tip #8
Our family prays, not just for our situation, but for other families we know or hear of who are going through this same thing. If you have a faith life, I highly recommend praying. I’m not the only one. I suffer from rheumatoid arthritis and fibromyalgia. My 1st rheumatologist was an amazing doctor. He was a devout Muslim who ended up going back to his home in Pakistan. Before he left he gave me a parting piece of advice. “You believe in God? Pray. I truly believe that prayer will help you. It will center you and give you greater peace. This will help to reduce pain.” That was non-denominational advice from a highly respected rheumatologist. To get through this cancer journey, we have prayed and continue to do so.
Cancer Survivorship Tip #9
Your Journey is Unique
No two cancers are alike. No two lives are alike. Because of this, it’s important that you don’t chase after fad cure-alls. Instead, get really grounded. Gather your tools, your support system, and your knowledge. Decide what you can do today. Tomorrow things may change, but today, there’s one thing you can do. Maybe it’s some information you need to read up on from your doctor, or setting up your CaringBridge. Perhaps you have to look into help to get your kids through this. Whatever it is, just take it a step at a time.
What Are YOUR Thoughts?
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In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:
I also blog at Heather Erickson Author/Writer/Speaker
 Not all patients have mutations with treatments available, but it is worth asking about.
 There are other sites available, but after trying several, I have found CaringBridge to be the easiest to use and the one my support system used the most. Feel free to use whatever site works for you and your family.
Originally posted 2018-10-22 07:00:21.