Top Ten Things Cancer Patients Learn from Cancer Patients

by Allan Hamilton

I have been luckier than most. As a brain surgeon specializing in tumors, I have known a lot of cancer patients. They are some of the wisest people I have ever met. Here’s my list of the top ten things my cancer patients try to pass on to patients who are in the early phase of struggling with the disease, to help them “over the hump.”

10. There are no genes like no genes. Cancer is a disease caused by mutated genes that allow cells to grow in a disorganized and invasive way.  To the extent that the tumor can be removed, reduced, or resected, you get the cells out of your body that harbor the mutation. Biologically, the more tumor cells out of the body, the farther down you are on the path to a cure or remission.

9. Never be dissuaded from alternative therapies. Under what circumstances could you possibly be more motivated to seek every adjunctive therapy available? Sure, you need to use common sense in sorting through all the therapies touted on the Internet. But many of them are proven to help, and many others offer substantial symptomatic relief.  Some are as useless as snake oil. Always tell your doctor what alternative therapies you are considering to ensure that it will not interfere or cross-react with other medications.

8. Find another cancer patient. Cancer patients cannot share everything they need to with “civilians”—folks who have never been through the cancer experience. I am moved to tears when I see the depth of the bond between cancer patients, despite different ages, diagnoses, and prognoses. It’s an exclusive club with only one membership requirement: you must have experienced cancer yourself.

7. Insurance companies don’t like to pay. Insurance companies often take the attitude that cancer care is so intensive and expensive that they need to say “no” to every request. They don’t really want to consider the merits of new chemotherapy regimens or alternative therapies. Remember, the squeaky wheel gets the grease. Become a burr under the saddle. Share your experience with other patients. Blog.  Chat.  Escalate the volume of your protest by appealing to the state authority for insurance oversight. Write letters to local hospital administrators and cancer center directors. Bring that pot to a boil. Insurance companies worry about bad publicity more than bad care. Put them in the spotlight until they do the right thing.

6.  Phase I, II, and III research trials mean something. People tend to think that whatever is newest, most experimental, is best. It’s not. Just the opposite. A Phase I trial is one where the research team sets out to escalate the doses of an experimental medication to see what makes the patient sick. There’s no need to prove the intervention is effective. The goal is to find out how toxic it may be. Phase II is a trial where the researchers are trying to find out if the therapy might work and what doses work best. That’s definitely a step up. Phase III is where you want to be. That’s when the therapy being tested is so effective, it is going head-to-head with other known effective therapies to see which is better. That’s when you know the chemotherapy or technique being used is already proven to be effective.

5. Bald can be beautiful. There are worse things than having your hair fall out (although it is upsetting when the process unfolds). Again, connecting with other cancer patients is critical to answering questions and concerns. Some patients take the attitude of “bald and proud.”  They’re saying: “This is who I am—it’s your issue, not mine.” Others prefer to wear wigs or scarves. The wigs being produced today are excellent, and are constructed with real hair and can meet the needs of most patients. I have been stumped trying to figure out whether it’s the patient’s real hair or a wig. Many cancer support centers throughout the country provide free wigs to borrow and wig washing parties.  So, one way or the other, don’t sweat the bald head.

4. Help your kids and family understand. Many cancer patients shy away from telling their children and family members precisely what is going on. Don’t fool yourself: if they know you well enough, they know. Kids especially. They know when something is wrong. The unknown is far scarier to deal with than the known. Not broaching the topic often gives the impression that the subject is taboo. Help your people understand what you are going through.

3. Cancer changes priorities. Staring at a potentially lethal disease changes your values. Things that were important to you (and still are to others) now seem superfluous. Cancer patients have been through the fire. They appreciate honesty, sincerity, and directness. They do not suffer fools and liars. Often confronting cancer is a life-transforming event and other people around you cannot keep up with you.

2. Selfish is not always bad. When you’re facing cancer, you’ve got to pace yourself. You’ve got to conserve your resources for what matters. Sometimes family members, friends, and co-workers suddenly see your behavior as more self-centered, less focused on them. That’s the way you should be. You need every ounce of energy you have to beating your cancer. So maybe, in the midst of chemo, you can’t be the soccer coach. You need to rally your strength and sometimes that means, plain and simple, there’s not much to go around for others.

1. There’s more to life than cancer. Once you get that diagnosis, it can seem like that is all anyone wants to talk about. It’s as if your identity has gotten completely hijacked by your diagnosis. Remind folks you still have a life and interests. You can talk about the Yankees (okay, maybe not this season).  Or go to the book club and actually talk only about the book. Or lead the working subcommittee without everyone assuming a new chairperson should be designated in the interim.

Cancer doesn’t necessarily play by the rules.  But knowing the rules helps you fight back, recover, and prevail.

Here are some other resources:

The Cancer Information Network with directories of support and services, links, books tools, an oncology dictionary and message boards

CancerCare is a national nonprofit organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved.
Site also available in Spanish

CancerGuide: Clinical Trials and Experimental Treatments with a wealth of information and strategies for finding , researching and participating in clinical trials

The Cancer Survival Toolbox is a free, self-learning audio program that has been developed by leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness.

The Lance Armstrong Foundation unites people to fight cancer with a belief that unity is strength, knowledge is power and attitude is everything.

Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life threatening or debilitating diseases.