recipe for survivorship

by Nancy McHone

“Survivorship” is a “buzz word” in the medical community. It’s not that we have not had any survivors in the cancer world; it’s more an issue of now we have so many survivors! In 2010 there were more than 12 million. So who is a survivor and what does it mean to be a survivor?

Back in 1986, the National Coalition for Cancer Survivorship said a survivor was anyone from the time of their diagnosis and for the balance of their life who had been or was diagnosed with cancer. So, welcome to the club to which you never sought membership! In 1992, a physician cancer survivor put a positive spin on the definition when she said, “a survivor who gets good care and lives as fully as possible is a healthy survivor.” (Dr. Wendy Harpham)

What does it mean to be a healthy survivor? Basically, it is becoming your own advocate and learning what you need to know for medical management to enhance your quality of life beyond cancer. Facing Forward, a publication of the National Cancer Institute, says the first step is knowing what to expect after cancer treatments so you and your family can make plans, lifestyle changes and important decisions as needed.

Some basic tools that are needed for healthy survivorship include:
1. Basic health care team – oncologist, primary care provider, surgeon etc. – names and phone numbers
2. Good communication skills – yours or someone who can speak for you
3. Knowledge of your treatment – surgery (what kind?) chemotherapy (what drugs? What dose?) Radiation (what body part and how many rads?) What kind of cancer did /do you have?
4. Acute and chronic side-effects from treatment that you need to be aware
5. What kind of follow up and with whom?
6. Daily exercise goals
7. Healthy diet - nutrition counseling if needed
8. Emotional support
9. Financial support planning

Regarding numbers 1 and 2 above: it is important to have open communication with your health care team. Take notes at visits. Ask questions to be sure you understand what you are being told. Is it something you can and will do?
Be honest. If not, ask for alternative ideas.

For numbers 3 and 4: It is very important to know exactly how you were treated for your cancer. Different surgeries and chemotherapy drugs and radiation treatment fields have different side effects – some that happen during treatment and some that can happen years later. You need to know what to watch for and who to see if a problem develops.
For example, Adriamycin, a chemotherapy drug, has cardiac toxicities. Should you have an EKG or a MUGA scan on a regular basis?

Lymphedema can happen immediately after surgery or years after all treatments have ended. The follow-up (number 5 above) that you need will be determined by your type and stage of cancer. If you are a breast cancer survivor, how often should you have a mammogram and who will do that for you? Your surgeon or your primary care person, your oncologist?

The National Comprehensive Cancer Network (www.nccn.org) does have suggested follow-up for most cancers. Exercise and a healthy diet are important to everyone. Research has proven that cancer survivors live longer when they maintain a healthy weight and exercise regularly. That doesn’t mean that you must train as if for a marathon! Walking with some strength training (weights or resistance exercises) will suffice. Med Fit is a great program that is available to assist people to regain, or maintain strength and mobility.

Timi Brown can tell you more about Med Fit (319-272-1755). Exercise has also been shown to help combat fatigue, a side-effect most survivors deal with at one point or another. Cancer survivors often face emotional as well as physical challenges. Body image can be affected. The role the survivor played in the family setting can be altered due to treatment side effects.

Sexuality and intimacy often take a big hit with cancer treatments. It is important to realize that you are not alone in the feelings you may be going through. Please share them with someone whom you can trust and feel comfortable.

Support groups are available to try. Feel free to contact the social worker at youir local cancer treatment center. Many times the diagnosis, treatment and aftermath of cancer can take its toll financially.

Finding patient financial advocates within the healthcare system or at a place of employment may help alleviate some of this stress. Working with a financial planner can help with budgeting if that is what is needed. Financial assistance for cancer care can be found at www.cancer.gov.

If employment issues are causing concerns, a resource found under the Equal Employment Opportunity Commission (www.eeoc.gov) and www.cancerandcareers.org may be helpful.

Another resource in this area is the Patient Advocate Foundation (www.patientadvocate.org) What does one do with all this information that is collected? Good question. With increased emphasis on survivorship has come a document called a “Survivors Care Plan”.

It is a multi-page document that contains pertinent information to a healthy survivorship. There are several different survivor care plans out there. There has not been any one that has floated to the top as being the best. A free example of one can be found on-line at www.journeyforward.com .

Find a survivor care plan that you like then work to maintain it with current information. Hopefully, one day in the near future, such a document will be part of every survivor’s electronic health record. Then information can be downloaded at the touch of a button and all involved in your care will have access.  

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