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Survivorship Plans

Before I begin, I need to make it clear that I am by no means an expert on survivorship plans. In fact, even though I subscribe to email updates from the National Coalition for Cancer Survivorship, Livestrong, and Triage Cancer, among others, I just began, in earnest, thinking about the necessity of having a survivorship plan only a week ago. At a myeloma support group, we had a speaker talk to us about needing a survivorship plan. I followed this up with a discussion with my doctor and someone at the Leukemia and Lymphoma Society.

What is a survivorship plan, anyway?

It’s important to note that we are all survivors from the moment we are diagnosed with cancer. The impact of the diagnosis is not just physical, but it also effects our emotional state, finances, career, relationships, and our overall health and quality of life. A survivorship plan is a living document with the first version, ideally, coming early in the journey. It’s basically a roadmap for navigating through all the challenges before, during and after treatment. For those in remission, the plan provides information on what sort of follow up appointments or tests will be necessary, as well as what resources are available.  When I was diagnosed with myeloma, it was a huge challenge to identify where I’d get help with nutrition, emotional support, financial assistance and other doctors I would need. I didn’t have a road map. My hematologist and myeloma specialist were focused on the cancer itself and weren’t completely available to help with this navigation.

At the recent support group meeting, we were told that we as patients should do our survivorship plan, with input and information from our medical providers.  But when I look elsewhere on the subject, some suggest your primary oncologist should put the plan together. In talking to my Dr., the other day, he suggested he can provide the medical history and data about my diagnosis and various treatment regimens, but otherwise I’m best positioned to put together a comprehensive plan. Fortunately for me, my wife is a copious note taker and can go back and tell me what happened when and who we saw.  My Dr also pointed out that as a myeloma patient, I’m always doing treatment (currently maintenance) and monitoring all aspects of my health and well-being, so as a plan for going forward after remission, it’s not as big an issue for me.

Why I need a plan now

But as I think about it, I do need a plan.  I am picturing a binder with various information about my cancer journey; doctors, treatments, side effects, resources. As my chemo brain intensifies and as I live longer with the disease, I need this binder.  And that’s another thing, we are living longer with cancer, so having a road map of where we’ve been and where we are going, is even more crucial.

In summary, and as I indicated in my first sentence, I’m not an expert. I’m just learning about survivorship plans. But I know enough to suggest you speak with your doctor about a survivorship plan. If nothing else, it will help you think about what you need going forward.  And take a look at Livestrong and Journey Forward, which both have templates for survivorship plans. There’s no right or wrong way in doing a plan, but having a plan is important.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Racheli Alkobey moderator
    1 month ago

    I love this. And think it so incredibly important to conscious and a) keep documents and know all the details of what we have been through and also b) to understand and plan accordingly and have one clear place of everything you endured- the meetings, appointments, drugs, side effects, etc. I am so inspired by this!

  • Carole McCue
    1 month ago

    Matt,
    Thank you for this important info. Yes a Survivorship Plan is like a roadmap. It shows us where we have been and guides us to where we should go. I applaud your wife’s note taking as that is most important.
    My survivorship plan was initiated by my oncologist’s nurse practitioner. It includes my initial symptoms, diagnosis, specific treatments , and any side effects or required hospitalizations.
    A very important aspect is the required monitoring and frequency of physician follow-ups and diagnostics.
    My oncologist also sent a copy to my PMD. This tool helps improve communication and awareness. When unsure of an issue, it provides clarification.
    Wishing you continued good health. I am in remission for Follicular Cancer and I view each day as a gift.

  • Daniel Malito moderator
    10 months ago

    @mattg God, I remember when my ex-wife and mother asked me in the same day what my “wishes were.” This was before we knew what kind of cancer I was suffering from. Really I wanted to say “I wish I didn’t have fu*kin cancer!” Lol. Its difficult to think about what will happen after cancer when you are still going through it, so this is article everyone should read. DPM

  • Yolanda Brunson-Sarrabo moderator
    11 months ago

    Hi Matt,
    I absolutely agree with having this plan! However, your talking about a person, who did her will at the age of 20. Now at this stage, you want things written down on how you want things to go. I suggest everyone dealing with a chronic situation consider planning survivorship. I suggest these types of conversations many times with my friends.

    Great information!

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