CURE COMMUNITY
Pushing your doctor for a survivorship care plan
BY DEBU TRIPATHY | OCTOBER 2, 2009
We have received several comments about the new trend and recommended practice of survivorship plans for patients following cancer treatment. By way of background, there has been a widening recognition that cancer patients are lost in the shuffle after a diagnosis of cancer and when they go back to their regular life and routine medical care.
Given the growing number of cancer survivors and more awareness of the need for special types of monitoring for long-term side effects, several organizations like the Institute of Medicine and the American Society of Clinical Oncology have made recommendations to develop treatment summaries and survivorship plans for patients and their primary care providers.
Several contributors to the CURE Message Board have weighed in that while they believe survivorship plans are good ideas, they are not getting a welcome reception from their doctors. Others have commented that their own research and thoughts about cancer treatments are dismissed by their oncologists.
It turns out that doctors and the medical field in general are vulnerable to the same inertia that we all experience when it comes to change. Two decades ago, it was unheard of for doctors to explain the pros and cons of their treatment recommendations in detail or to solicit opinions from their patients regarding alternative approaches.
Centering care around the patient is a welcome trend, but it is still young. The field of survivorship has matured in part due to the growing voice of patient advocates who pressured the government and other agencies to increase research funding and services for those living with or after cancer. The fruits of awareness and research are now being evidenced by new guidelines for survivorship. But change in physicians' attitudes can be slow, but I suspect that survivorship plans, even with input from patients themselves, will soon become routine.
There are well over 10 million survivors in the U.S. so every physician needs to have knowledge on monitoring and addressing problems that can arise. Oncologists will not be able to follow all their patients long-term with the looming shortage of cancer specialists and increasing complexity of cancer treatments. So the movement toward survivorship wellness will clearly continue and will be further refined not only by the medical field, but also by patients and the public--perhaps even through CURE's message board.
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That's interesting. I just went to my doctor
for a 6 month check up. My oncologist retired
but this doctor knows my history of ovaian cancer. Long story short , I was
never given any plan, they advised against all hormones. For someone 35 that's a stretch on your nervous system as well as other many other things. I am 45 now and grateful to be here but there are vital parts of me missing. And the answer is oh well! Next!
I take vitamins and supplements, exercise, have a healthy weight and have been in therapy the whole time. On anti depressants ect. But I haven't had sex in. 7 years and could now I wonder what did they do to me. But the reg. Medical community doesn't have time and I know something went amiss long ago but I thought I should just be thankful.
- Posted by Cheyenne 10/2/09 3:46 PM
I agree that this there is a HUGE need out there!
After being off chemo for 1 year, I experienced a highly stressful situation and my body went to pieces. I gained 12% of my body weight in just 2 months, lost about 50% of my hair and my digestive system was a mess. These are only a few things out of many.
I went to my oncologist who wanted to have nothing to do with me as I blamed it on the Tamoxifen I was on. I decided to go to a Natural MD, and through him I discovered that not only were my adrenal glands not functioning properly, but I was deficient in Vitamin D and Magnesium. I also tested to have a high level of Mercury in my body as well.
Before chemo I was a SUPER healthy person. I have never been overweight and I have always eaten organic foods staying clear of anything processed or refinded.
I belive that chemo is the reason WHY my body was not able to naturally cope with my stress as it did in the past and it just broke down.
The long term damage chemo does is ignored and frankly not even acknowledged and it is about time someone starts to address this instead of just sweeping us under the carpet.
- Posted by Susie 10/15/09 11:19 AM
You are so right! It's been 7 1/2 years since my last chemo treatment and I'm still developing problems. Last year I found out that my thyroid gland was not functioning properly (Hypothyroidism). My hair is so thin it can't be styled. Last week, it was diabetesw. As I enter this comment, I'm itching so badly. I itch from head to toe. I have tried everything, but no relief. We need to remember that chemo is toxic. As I sat in the chemo chair the first and read the consent form, the side effects mentioned actually made me cry. One of them being death.
I know there is no other treatment right now, and I desperately wanted to live, I think the physicians could pay more attention to the survivors and try to help with our concerns.
- Posted by G.K. Dorsey 10/15/09 9:45 PM
Nine years ago with my first battle with breast cancer there was never mention about "after" all the treatments. Now that my cancer has returned - metastasized bone cancer that is incurable, I do know that there is no "after" but only from the type of cancer itself.
I honestly had thought I was home free once I passed the five years! My worst side effects from chemo are "chemo brain" and extreme fatigue. Let's do more about what is going to happen, along with what is happening.
- Posted by Pam Adornato 10/26/09 9:57 AM