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As cancer survivors, who is watching us now?

BY Kathy LaTour
PUBLISHED August 13, 2013
Kathy LaTour blog image
As is to be expected, in a recent survey of oncologists and primary care physicians (PCPs) in regard to who should care for cancer survivors, most PCPs (51%) supported a PCP/shared care model while the majority of specialists (59%) strongly endorsed an oncologist-based model (oncologists were surveyed but they included nurse-specialists). Less than a quarter of PCPs and oncologists preferred a specialized survivor clinic. (You can read more here.) Most PCP's thought they were better able to follow up with breast and colorectal patients, detect recurrent cancer, and offer psychosocial support, but only 32% wanted to assume full responsibility. So where does this leave us, the cancer survivors who have to live out our lives with follow-up from doctors, most of whom are not aware, whether they are oncologists or PCPs, what late effects we need to watch for--or that there are late effects. And while they are rushed for time now, we haven't seen anything yet, as the number of survivors grows and the number of oncologists drops. That may be a bit overstated, but it has been my experience that many oncologists don't know about late onset effects and there are a few studies that prove that out. Most did not know about cardiac toxicity when asked and, when we go in to see them, they ask how we are. We say we are tired and they never connect it to treatment but rather to getting older. Someone has to figure out we need more than a "Howdy, you look great see me next year." I think it's even selfish reasons some of them want to keep following all of us. I had one oncologist tell me that he didn't want to give up any of his patients because with all the patients that die, if he didn't see the ones who lived, he didn't think he could go on. Well, that's great. We make them feel better because we lived. Again, who is going to look at late effects like cardiac toxicity and who is going to help with fatigue and pain for neuropathy? We also can't expect insurance companies to keep up with all these follow-up appointments. I remember one friend who was going to his surgeon, his oncologist and his PCP after treatment had ended. He dropped the surgeon, but then told the oncologist and PCP to get their heads together and figure out who was going to follow him because the insurance company was not going to pay for both. They never did and he continued to get requests for follow up by both. This brings up all those other things we need to see our PCP for--you know... those things we need to do as we age, such as colonoscopies and heart follow-up. And I am not talking about follow-up when we are still at risk. Some cancer patients need the specialization that their oncologists bring to the table for quite a while. When they can be cut loose is up to the doc. The article once again brings focus to survivorship care plans that give us a sense of what we need to watch for in the future. Do you have one? Tell me what you think about being followed and who you see doing this as you move out from treatment.
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