Partners even more likely than survivors to experience fear and worry over long term, study finds
THURSDAY, Sept. 13 (HealthDay News) -- Even after cancer patients beat their disease, many still grapple with health issues related to their treatments, including cardiovascular and bone problems. But, survivors often say it's unclear which doctor to turn to for follow-up care.
A new study of 18 prostate and 24 breast cancer survivors suggests the majority would prefer to continue seeing their oncologists when health issues crop up, because they aren't confident their primary care physicians are equipped to address their post-cancer health needs.
Study author Dr. Shawna Hudson, an associate professor of family medicine and community health at The Cancer Institute of New Jersey, said the finds are concerning.
"For early stage cancer survivors, we expect your primary care physician is going to play a stronger role in follow-up after cancer treatment," said Hudson.
She said statistics show almost one-third of 36.6 million annual office visits made for cancer care are at primary care doctors' offices, and it's expected that number will increase by 2020, when a shortage of cancer specialists is predicted.
The patients in the study were all diagnosed in the early stage of their disease and had finished treatment two or more years before participating in the research, which was published online Sept. 10 and in the September/October print issue of the Annals of Family Medicine.
The participants, whose median age was 64 and three-quarters of whom were women, answered questions during an in-depth telephone interview. Fifty-two percent said they preferred to visit their cancer specialist for follow-up medical care, while 79 percent believed that cancer follow-up care requires a specialist's knowledge of cancer that primary care physicians do not possess. One-third did think there could be a role for their primary care doctors, as long as they were kept in the communication loop with oncologists.
One survivor quoted in the study said he would love to see a survivor plan be part of his treatment plan, so "everybody would be on the same page."
"Patients need a very clear road map about what to do," said Hudson.
Almost 70 percent of survivors have conditions that require a comprehensive approach to their care, including cardiovascular disease, kidney issues, diabetes and fertility-related problems, many related to chemotherapy and radiation treatments, Hudson explained.
"Follow-up care is not just about making sure your cancer's not back. It's about making sure you monitor and get care for problems like cardiovascular issues and bone density issues that might happen because of some of your cancer treatments. It's the health prevention piece that's usually done in primary care," Hudson said.
Dr. Catherine Broome, an associate professor of medicine and a medical oncologist at Georgetown University's Lombardi Comprehensive Cancer Center, said while the study is small, it does raise important issues.
"As a medical community in general, we've struggled with this question about follow-up care for a number of years. Economics and health care reimbursements are beginning to play a role in how we're asked to manage these patients," Broome said.
"I personally do like to try and follow my patients much longer than the first few years. When I see them, I may be a bit more focused on some of those things that might be overlooked by a primary care physician, like an early-stage breast cancer patient who got chemo and may be cured but who might experience long-term effects such as thyroid abnormalities," said Broome. "The subtle signs might be more obvious to us."
The LIVESTRONG Survivorship Center of Excellence, at the University of Pennsylvania's Abramson Cancer Center in Philadelphia, helps patients navigate the transition from cancer patient to cancer survivor. Survivors can visit the center if they want to develop a health care plan, or if they have specific medical concerns.
The center is staffed by experienced nurse practitioners, said director Dr. Linda Jacobs. "At our survivorship program here, we see a variety of patients under all different circumstances."
Patients who aren't comfortable asking their oncologists questions about fatigue, sleep issues or sexual function can come to the survivorship program for symptom-management help, said Jacobs. She and colleagues can refer them to nutritionists, physical therapists, cardiologists and endocrinologists, among other specialists.
Karissa Hahn, a 33-year-old breast cancer survivor from New Jersey who was diagnosed in 2009 when she was pregnant, underwent surgery, chemotherapy and radiation to treat stage 3 cancer. She said when her treatment ended, her oncologist recommended she check in with her every three months for the first six months, then every six months after that. When elevated blood pressure and an ear infection cropped up during that time though, Hahn went to see her primary care physician who helped her manage both conditions successfully. She also visited a midwife for other health needs.
She said it was up to her to decide where to get her care. "It was hard to know whether I should call my oncologist or my primary care physician," said Hahn, who recently learned her cancer has returned.
Study author Hudson said more bridges need to be built between oncologists, primary care physicians and cancer survivors.
"Right now, it's all on the patient," said Hudson. "The primary care physicians need a guide for care, especially for early-stage cancer survivors. We need practical guidelines that say, 'Here's what you do for this type of cancer patient.'"
In the meantime, she said patients can ask lots of questions. "They need to be proactive with their oncologists about asking them how and when they transition back to primary care."
The U.S. National Cancer Institute has more on post-cancer care.
SOURCES: Shawna Hudson, Ph.D., associate professor, family medicine and community health, The Cancer Institute of New Jersey, New Brunswick, N.J.; Catherine Broome, M.D., associate professor, medicine, and medical oncologist, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, D.C.; Linda Jacobs, Ph.D., R.N., director, The LIVESTRONG Survivorship Center of Excellence, University of Pennsylvania, Abramson Cancer Center, Philadelphia; Karissa Hahn, New Jersey; September/October 2012, Annals of Family Medicine
Copyright © 2012 HealthDay. All rights reserved.
Wed Sep 19, 2012 08:41 PM
Doctors and even dentists appear to be unaware of problems caused by medication /chemo and radeotherapy for cancer treatment . I absolutely agree that it is important that cancer patients need long term care from cancer specialists . At the moment I have real problems with my joints and have trouble sleeping because of the pressure on my joints . Pain killers are the only thing that Dr appear capable of supplying . There is never any communication concerning my previous treatment
Wed Sep 19, 2012 09:35 PM
This is pretty much a no brainer people. What primary physician knows anything about cancer care? At least 90% of all questions asked of my primary doctor are referred back to the oncologist or surgeon. My primary doctor and I agree on the following; He does not have any idea what is in my neck, has no idea what my throat should look like, and therefore has no idea how to treat pain or other issues. Cardio vascular doctor mystified by an artery that is not apart of normal human anatomy. Since simple issues like a common cold no longer exist, why should I have a primary care doctor? I have had 5 years worth of "I don't know" from dozens of visits that cost not less than $175 each. I don't know about other people but I do not believe that "I don't know" is worth $175 where there exists no reasonable expectation of any other reply.
Wed Sep 19, 2012 10:07 PM
Thu Sep 20, 2012 02:04 PM
As a long-term survivor (30+ years) I am so glad to hear this issue being addressed! I couldn't begin to count the number of times I've struggled with 'who do I call for this...?' Or 'should I be concerned about this...?' with no clear answer. Especially now as a long-term survivor. Early on in my recovery I frequently got a response indicating "you're doing so much better than anyone expected, why worry about trivial things..." Now there seems to be a need for long-term survivorship care as a whole new field. What a wonderful thing!!
Fri Sep 21, 2012 04:57 PM
Agree completelly that only oncologists know effects of radiation and chemo. I have survived 7 years after being treated for both tonsilar and tongue cancers. When I developed a swallowing disorder 2years post, I was treated by a number of specialists for: duodenal ring by Gi, Refered to GI by ENT, told I was just afraid to swallow by second ENT. Finally found oncologist on line who specialized in Head and Neck cancers. Subsequentially, learned about my disorder at support group meeting at cancer center.
Sun Sep 23, 2012 09:57 PM
I'm one of the lucky ones as my MD is also an oncologist and hope she'll be able to treat me for minor medical problems as my Hemotologist/ onocologist is 2.5 hours away. I can imagine how hard it is to have to choose whom to call......
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