CISN - Managing Your Care

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Managing Your Care

Overview

Receiving a cancer diagnosis is not only shocking and scary, it also involves many choices, visits to various doctors and a bookkeeping system to keep track of everything going on.

We offer the following suggestions:

  • Put together a treatment team you trust and are comfortable with.

  • Put together a family / friend support team.

  • Make an informed treatment decision.

  • Buy a three-ring binder to store the many pieces of paper you will receive.

  • Know your limits /
    learning style.

Your Treatment Team

There is tremendous variability in oncologists across the United States. Many oncologists think differently, communicate differently, relate to their patients differently, and might recommend different treatments.

Shop around, find the Doctor that is right for you.

A very important aspect once you have selected a treatment team is to be honest with them. Let them know how much you want to be involved with making decisions.

If they recommend a medicine and you begin to have side effects, don’t just stop taking the medicine. Call, ask for an appointment and discuss what else might be done or if there are other medicines to counteract your symptoms. It is very important that everyone is on “the same page”.

Again, be honest about what you are doing. If you are feeling vulnerable (and who isn’t) ask a friend to come along to support you.


Your Personal Support Team

Cancer patients sometimes feel like they need to acquire a PhD in their cancer overnight.

Asking for help from family and friends can lighten the burden, speed up the research process, and remind you that you are loved.

Also ask a capable, caring loved one to join you for your medical appointments to serve as your advocate in communicating with nurses, doctors, and other members of your medical team, or to hold your hand.

Serving as both patient and advocate for one’s self can sometimes be too stressful.

Make an Informed Decision

There is no correct treatment option for all patients, even if their diseases are similar.

Your doctor will help identify treatment options that are well suited to your disease. But, in many cases there will be several options, as cancer is not yet well enough understood to know for sure which one will work best for you.

Further, since most treatment options represent a balance between benefits (advantages) and risks (disadvantages), your particular preferences are important to factor into your decision.

For example, some people want to take very aggressive therapy to feel confident that they have done everything possible to fight their cancer. They may want to take very toxic chemotherapy (i.e., many side effects), even if the chance of it helping them is quite low.

Others might be quite concerned about the toxicities associated with chemotherapy, especially side effects that may not show up for many years after treatment is complete (e.g., new cancers caused by the chemotherapy). They might choose to forego chemotherapy unless it has been proven to have a very large and likely benefit.

Many of us have had to weigh advantages (benefits) vs. disadvantages (risks) when buying a house or car or when / where to move. The same kind of thinking applies when making treatment choices.

It is important to make the choice that is right for you. Use your treatment and support teams to make these decisions.

Evidenced Based Medicine (EBM)

This is a term used to describe a process where medical decisions are made based on the best scientific evidence. It attempts to assess the quality of evidence relevant to the risks and benefits of various treatment choices (including lack of treatment).

EBM also recognizes that many aspects of medical care depend on individual factors such as quality and value-of-life judgments, which are only partially subject to scientific methods.
CISN Tip:
  • We recommend that people understand EMB and discuss this with their treatment team.

Your Binder:

You will be getting many handouts from your various medical team members that you will want to keep in one place. We recommend that you purchase and use a three-ring binder.

We also suggest that you keep the following information in your binder as well.

Diagnostic Information:
  • The date you were diagnosed
  • The type of cancer you have
  • The stage of your cancer
  • Lymph node involvement
Test Information
  • Pathology report(s) that describe the type and stage of cancer
  • All lab reports
  • All imaging reports
  • Names and doses of chemotherapy and all other drugs
Places and Contacts
  • Contact information for all health professionals involved in your treatment and follow-up care (address, phone numbers, names)
  • Places and dates of specific treatment, such as:
  • Details of all surgeries
  • Sites and total amounts of radiation therapy
List of signs to watch for and possible long-term effects of treatment

  • Any problems that occurred during or after treatment
  • Information about supportive care you received (such as special medicines, emotional support, and nutritional supplements).

Know Your Limits

Don’t forget the joys of life in the midst of managing your cancer.

Laughter is excellent medicine for every aspect of your being. And trust that you will move through your challenge step by step.

Never give up hope!

Moving through the cancer maze is a process that takes time.
Many long-term cancer survivors can attest to wanting to be further down the path than they are. Be patient, and know that you will progress.
CISN Tip:
  • You will learn more detail about each of the above topics as you move through each section of the website.