Living with cancer blog
Tools to take charge of your cancer survivorship plan and medical history
By Sheryl M. Ness, R.N. April 17, 2014
It's been a while since we talked about having a survivor care plan to organize your diagnosis, treatment and follow-up plan.
Most major cancer centers today offer such plans. It will soon be a standard of care to provide treatment summaries and survivorship care plans to all cancer patients.
The primary components of a plan include:
- Diagnostic tests performed and results; including tumor site, stage, grade and other biomarker information.
- Dates of your treatment initiation and completion; including surgery, chemotherapy, radiation therapy, transplant, hormonal therapy, gene or other biological therapies provided or clinical trials.
- Information on possible late and long-term effects of your cancer treatment and symptoms you need to monitor.
- Information on possible signs of recurrence and second tumors.
- Recommendations for healthy lifestyle (e.g., diet, exercise, healthy weight, sunscreen use).
- Information on effective chemoprevention strategies to prevent second cancers (e.g. Tamoxifen in women at high risk for breast cancer; aspirin for colorectal cancer prevention).
- A list of cancer screening and other testing or examinations recommended for the future.
- Referrals to specific follow-up care providers, support groups, and to your primary care provider.
As a cancer survivor, you may have been diagnosed in one medical center and traveled to a specialist for a second opinion, then back to another center for treatment. It's important to be able to organize your medical history during and after treatment for your personal use and to share with present and future healthcare providers.
I recently talked with Maayan Cohen, who is the founder of a new app called Hello Doctor that you can download free to your iPad or iPhone and use to organize all of your medical records in one place.
Ms. Cohen was caregiver for a good friend who was diagnosed with a brain tumor. She was quickly overwhelmed by the amount of documents they needed as they visited various oncologists and specialists for diagnosis, second opinions and treatment.
With the free app, you can scan, send or take a photo of your medical documents with your phone and the tool organizes and tracks all of your paper or digital medical records in a safe and secure place.
Mayo Clinic also has a free a patient app that gives you access to Mayo Clinic wherever and whenever you like. It provides you with:
- Updates on health news and information from Mayo Clinic
- Access to schedule and manage your appointments
- Information on our education resources, classes and sessions
- Access to your personal health information
- Maps, lodging, restaurants, concierge services, shopping and events at all three Mayo Clinic sites in Minnesota, Florida and Arizona.
Be sure to update your iPhone or iPad with these tools before your visit with Mayo Clinic.
I'd love to hear more about your recent experiences with care plans and how you have organized your medical documents. This is a place to share new and innovative ideas with each other.
For more information about care plans and treatment summaries — see the Cancer Advocacy.org site (www.canceradvocacy.org/resources/planning-your-care/).
Apr. 17, 2014