Can I Get a Roadmap? Cancer Survivorship Care Plans Do Exist

Where’s my cancer GPS?

For those of us who have completed initial treatment for breast cancer, what to do next may be a big question without a ready answer. Often, it gets harder to answer that question the further we get from the date of our original diagnosis. We may get some kind of screening every year. We may be told we are still NED. We may still be taking some kind of hormone suppressors or we may have quit taking them. We may have managed to get on with life despite the continuing fear of recurrence or mets. And yet, we may very well still feel like utter excrement and not know what to do about it.

Some of us may continue to see one or more of our cancer doctors on a regular basis. Some of us may be followed mainly by our primary care doctors. But many of us have never discussed with them any sort of overall strategy for what, for lack of a better word, has come to be called survivorship. We may not even get asked about long-term collateral damage, and if we bring something up, we may get a shrug or a prescription for a lab test. But what we don’t get is a road map.

I was prompted to write this after reading a post written by my friend Eileen about how she’s been doing lately. Still plagued by fatigue, she describes how she is being followed mostly by her current primary care physician, who doesn’t seem to know how to help her and is not receptive to her suggestions.

What the ever-loving heck? Back in 2010, I wrote a few posts about the existence of survivorship care plans. The first post highlighted the publication of a book by the Institutes of Medicine called From Cancer Patient to Cancer Survivor: Lost in Transition. Yep. Pretty much says it all. Later that year, I followed up with another post that described in more detail the efforts of the Centers for Disease Control, which began in 2003 to formulate, with the help of several other organizations, a national action plan to develop and implement the use of cancer survivorship care plans. A pdf of a patient-centered brochure describing the plan may be found at this link.

2003?? So, what happened?

In 2011, The Oncologist published an article about how to maximize the benefits and effectiveness of these plans. The most obvious conclusion to be drawn from this piece was that the healthcare system was still figuring out how to do them in the first place. A few years later, the Journal of Cancer Survivorship published a study that assessed the status of the CDC’s national action plan. The organizations included in this assessment were the American Cancer Society; CancerCare; CDC, Division of Cancer Prevention and Control; Livestrong Foundation; and the National Coalition for Cancer Survivorship. Twenty-two people were interviewed for this assessment, a group comprised of organization directors, clinical supervisors, and staff who directly managed relevant activities. The study did not specifically mention the inclusion of physicians or oncologists, nor were any actual cancer survivors interviewed. Table 2 lists the priorities identified by the original action plan. They all sound good, but the study found that implementation was a lot more complicated. Overall, it seemed that most recommendations were put into place, but that there was a lot of room for improvement.

One feature of the action plan was the use of patient navigators, who may play a role during acute care as well as survivorship. One of my previous posts, written last year, discussed the availability and effectiveness of these navigators. In 2014, a study conducted by the University of Ottawa questioned the cost-effectiveness of the survivorship care plans used with breast cancer patients. The study found little difference between standard follow-up care and care provided according to a survivorship plan. Survivorship care plans were, in fact, found to be slightly more expensive, but the authors suggested that their cost-effectiveness might be improved by better identifying patient needs, using health information technology, and improving data collection. Another study was completed in 2015 at UCLA to look at the use of treatment summaries and survivorship care plans for underserved breast cancer patients at two public county hospitals. Results have not yet been published.

I feel more lost than ever.

Meanwhile, one of the original goals of the CDC’s action plan was for each of us to get a written survivorship care plan. I’m still waiting for mine. And I am still wondering whether our doctors even know how to write one. To that end, I unearthed a few resources to help our doctors help us.

The simplest one appears to be a template designed by the American Society of Clinical Oncologists (ASCO). The details, aimed at healthcare providers, are described here. A description geared toward patients can be found here, and recommendations specific to breast cancer patients are described here. The template itself is about two-and-a-half pages long, and I’ve included it as a downloadable pdf here. You could perhaps bring it with you to your next appointment with the doctor of your choice. You could probably even fill in a lot of it yourself.

And, naturally, there’s an app for this. JourneyForward provides a downloadable program which can be used by you or your doctor for building a survivorship care plan. The link to this software is here. Yes, I did download it, and, yes, I started filling it in. But to do a good job of it, I would have had to look up a bunch of crap I didn’t feel like looking at right now. Maybe later.

I hit the motherlode when I visited the website for the National Comprehensive Cancer Network. Never an organization to leave any stone unturned, NCCN provides an evidence-based tome for practitioners describing how to assess any and all cancer survivors and what elements to include in a survivorship care plan. If you thought ASCO’s two-and-a-half page template was long, the NCCN’s guidelines are a whopping 179 pages. A pdf of these guidelines can be found here. I suggest clicking on the link for the Survivorship Table of Contents on the upper right and going from there. It’s really quite impressive. The guidelines discuss the role of primary care doctors (page 98), and list the elements that should be included in a summary provided to cancer patients upon the completion of treatment (pages 98-99). These include:

  • a personalized treatment summary
  • information on possible late and long-term side effects
  • information on signs of recurrence
  • guidelines for follow-up care
  • identification of providers
  • recommendations for healthy living
  • identification of supportive care resources

Looks perfectly splendid, doesn’t it? The chances of getting all this from our doctors? Not so much. However, as long as we cancer patients can read, at least we can use these guidelines as tools to help us look after ourselves. And hope our doctors will want to go along for the ride.

In the meantime, I’d love to hear from you about your experience with this. Did your doctors provide any sort of plan or summary of your treatment? Who do you see now for follow-up care? How is it going? Are you getting what you need? Me, I could use a winning lottery ticket. It wouldn’t fix everything, but it would surely help.

This entry was written by Kathi, posted on Wednesday, March 23, 2016 at 03:03 pm, filed under Health & Healthcare, Life & Mortality, Survivorship and tagged . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

17 Responses to “Can I Get a Roadmap? Cancer Survivorship Care Plans Do Exist”

  1. Hmmm… I think the concept of survivorship plans is good. But I only think they would work if they are given to the patient at diagnosis. Any later and it would be too hard to recreate previous treatments.

  2. Yes, it would make sense to start them from the beginning, wouldn’t it?

  3. Kathi, I’m not sure if it would make sense to have a survivorship plan at diagnosis or not only because not everyone has the same residuals. For example, many deal with lymphedema, fatigue, post-traumatic stress, maybe a divorce or blending back into the workforce, while these things may not be relevant to others. Some struggle with side effects from AIs while others, like myself, are triple negative and don’t go on any medication. The main thing, though, is our oncologists should be aware of the many challenges and our PCPs should have access to that knowledge.

    Meanwhile, I saw a new primary doctor two days ago and I LOVE him. I am in very good hands once again. And thank you for the resources in your post. I’m going to click on them now.

  4. Eileen, I’m soooo glad you have found a new primary doc that you love. Makes a HUGE difference! You know, I don’t think all this has to be that hard, really. Our cancer docs have to keep decent records, after all, but I think it’s partly a question of access. If it were easier for us (and them) to put together all the info pertaining to our cancer treatment, and gather it all in one place that we could get it perhaps electronically, the survivorship treatment summary at least would, in large measure, write itself. My cancer care has involved my dealing with a few different hospitals and a bunch of different offices & treatment centers & screening centers. It’s hard to gather all that info in one place, a task that has mainly fallen to me. I wish I could just put it all on a flash drive that my various docs could plug into their computers. Then, we could all see what’s been checked so far and what hasn’t. It would save a lot of work. In theory anyway. Oy.

  5. This is a terrific compendium of resources. Once again…thank you for your research!

  6. Thank you, Chandra!!

  7. Hi Kathi,
    Such an important topic, Kathi. My oncologist is wonderful. But still, there remains a disconnect about what it’s like for me in this murky place I live in known as survivorship. I remember a couple of years ago, I asked him about a survivorship plan and he sort of looked at me with a puzzled look. He ended up filling out some forms, but there wasn’t really anything helpful in them. I got a treatment summary and what else I can’t remember off the top of my head. I’m glad more resources are being put together, but implementing them in a meaningful way is another matter. I’m still looking for my roadmap. Thanks for the post and for all the links. xo

  8. Thanks, Nancy. I think that’s really it, that docs just need to know that there are tools out there. A lot of them don’t seem to know that or don’t have the time to look for them. My own PCP, bless him, has been very receptive to links & info that I’ve provided about all sorts of things, including the one I sent him last year which was an online tool for helping to calculate a person’s risk for heart disease/heart attacks over ten years. Even I don’t spend as much time as I could on researching resources for my own health and health profession. But if I find something good, I try to share it. All we can do is try. xoxo

  9. Thank you for all the helpful information, Kathi. I was not given a survivorship care plan. In fact, my Onco was ready to stop seeing me after two years of completing treatment. I am back to seeing her 2x a year because I asked. They pay attention to my issues as they come — if I feel depressed, I am referred to a counselor or therapist, if I complain about side effects, I get sent to see a specialist…and so forth. My hospital has a program called ‘resources after cancer’ where they focus on different areas — very general though — and if a patient is interested in participating, they have the option to do so. They offer things like workshops, and they would bring in a lawyer to talk about career and cancer, for example. So a patient doesn’t receive a care plan specific to their case but there are services that can help us deal with survivorship. We are mostly left on our own though. My onco is research-oriented and she keeps things general with me. I like her but there’s that level of intimacy missing which I am sure it’s part of the culture there.

    I will check out all the links you shared. I am sure many patients have wondered about these resources. xo

  10. It’s admittedly difficult for docs to stay on top of everything, for sure. It would help, though, if at least they know that there are resources to help them and us. And that certainly includes a good list of clinicians to refer people to. xo

  11. My guess is that in the United States, anyway, once a patient is deemed NED, the oncology team moves on so to speak to focus on caring for those less-fortunate patients who are not NED. Time and resources are in short supply, and the NED patient & her oncologist operate on a “no news is good news” basis. My oncologist “promoted” me from bi-annual to annual check-ups once I reached the 5-year mark. While he’s kind and thorough, he has bigger fish to fry, and neither he nor I have ever mentioned a survivorship plan. I will bring it up at my next appointment and am curious to hear his thoughts. Thank you for your insights.

  12. Kathi, excellent post on such a worthwhile topic.

    I’m still waiting for my survivorship plan, too. Everyone was so enthusiastic about me walking away from radiation and the chemo room, that someone forgot to tell me how to cope after I was “done.” By the way, how many of us ever feel we are really done?

    Anyway, I get followups from my oncologist and PCP. My oncologist is fantastic, and he tries to be reassuring, but it’s so hard….

  13. Oy, Beth. I’m glad you have a fantastic doc. It does help. I love my PCP, because he never minds if I bring him info or suggestions on how to help me. But we do end up having to look after ourselves. No one doc can ever know everything. xxoo

  14. Kathi, thank you for this great overview of what’s going on with survivorship care plans and for including all these helpful links.

    I still see my oncologist once a year, as well as my gyn and primary care doctors. What’s in the ASCO plan template is being covered for me but I’ve never received anything like it in writing. At one point, my oncologist’s office was providing a summary sheet after visits, but it wasn’t this comprehensive.

    This is another area where unfortunately patients still have to advocate for themselves in many/most cases to get the information they need. Your post is an excellent resource to help in doing that.

  15. Thank you, Lisa. I think it always comes down to self-advocacy in the end. When I see my own PCP in a few months, I will probably be bringing with me a fatigue-self-assessment tool, among other things. At least I know what to bring. *sigh*

  16. I just finished up radiation 3 months ago. All of my Dr’s have been pretty informative. I get to see my Med Onc every 3 months for the next 5 yrs since I had a bad reaction to Tamoxifen so lucky me, I get to be put through menopause early in order to take a different medication. Anyhow…my rad onc and my gyno have been more than supportive and informative (at one point, I felt as if I was drinking through a fire hydrant with all of the info I was getting). I wish I would have been warned about how truly draining the radiation was going to be and how crappy I would feel….I have a 5 yr old son and pillow fights wipe me out (that’s why we have them right before bedtime. LOL)

    I just want to say how much I enjoy reading your posts. I keep most of my feelings about my diagnosis to myself and the posts really help me to realize that I truly am not alone with my thoughts. Keep ’em coming!

  17. Thank you, Stacey! So glad you have found something helpful here. Yeah, radiation…lordy. Radiation just knocked the crap out of me. That’s when my longterm fatigue really started. Oy. I like how you described being flooded with information! LOL. You are so not alone! xo, Kathi

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