Comments From Our Readers- Winter 2017

LIVING IN DIFFERENT WORLDS

I finally got around to the December 2016 special issue on medication adherence and financial support, the “Annual Cancer Guide” and the “Prostate Cancer Resource Guide.” In a nutshell, your editors/writers and I must live in alternate worlds. In 15-plus years of dealing with prostate cancer, I never had a doctor or nurse address cost. True, my profile says I have Medicare. But it would be nice if someone acknowledged the financial issue. Social workers? My only contact with them has been at the hospital ... where they offered me a chocolate.

Frankly, I’ve found that my doctors are too focused on me as a disease, a patient — not as a person. Those are MY problems, not theirs; the next patient is waiting! Truth be told, I’m OK on the financial end, but I feel terrible for those who have to deal with high costs and low insurance reimbursement.

It must be horrible to have to choose between doctor visits, medication and feeding your kids and spouse. You’re being treated for the big C; just going to work is hard!

Then there’s the issue of computer literacy. I can check on trials, review medication side effects and learn if there is financial aid — IF I have a computer, reasonable computer skills ... and English! For example, your “Prostate Cancer Resource Guide” is just about all computerese! It is a good resource, but I love the line on page 12: “educate yourself about clinical trials.” I have a Ph.D. in chemistry, and I lose it when I try to follow National Cancer Institute information on clinical trials. How can a layman be expected to evaluate online information ... or, for that matter, the quality of his/ her doctors’ skills? The rebuttal may be: “If you want more information, ask for it.” Easy to say, but when? I’ve only got 10 to 15 minutes with my doctor, including the exam. And, more important, if I’m poor, illiterate, scared or confused, I’m not about to ask questions.

One suggestion for patients, The “Cancer Guide” recommends, is to “store extra paper ...” Wrong. Invest $30 in a small tape recorder and ask to record doctor visits.

Bottom line: Are the medical professionals and insurance companies part of the solution or part of the problem? I also think your writers and editors need to walk in our skins. You’re clearly trying, and I do appreciate it, but we seem to be in different worlds.

Herb Skovronek, Ph.D.

MORRIS PLAINS, NEW JERSEY

APPRECIATED ARTICLES

There were two articles in your Fall 2016 issue that really echoed my experiences. In 2011, I was diagnosed with mid-gut neuroendocrine cancer (NETS) with metastases to the liver.

Blogging Your Way Through Cancer: A few months before the cancer diagnosis, I had started blogging about music I was learning to make on the computer since my retirement. I changed that blog to “Cy Ball — Music: A Blog about Music & Cancer (cyrilfb.com).”

Originally, I wanted my rather large family to be able to read about my progress and the disease itself.

Almost no one outside of the medical community has even heard of NETS, and NETS is poorly understood or even known within the medical community, so I found many things to talk about. It turned out that many patients found it valuable. From things the doctors don’t tell you (they might not know), to things to ask for during your treatment, to battling your insurance and just being your own, informed advocate, a rare disease can be daunting. My hope is that I have been able to inform and help my family and others with this disease.

Web Find: Mobile Site Offers Ready Access to Guided Meditation for Cancer Patients: By chance, I had started a meditation practice about nine months before the NETS diagnosis. Meditation was a very useful tool for navigating the emotions and difficulties of cancer. The very fact that information on that particular type of cancer was sparse left me feeling lost. Three months after the diagnosis, I had a treatment that left me with liver pain that took two to three weeks to go away and did not respond well to pain drugs. Meditation enabled me to get through that. I now believe that a lmost anyone can benefit from meditation practice and that it can and does help those with cancer. I would encourage people to try the website mentioned in the article: thisiskara.com. I plan to add it to my practice.

Cy Ball

DENVER, COLORADO

FITNESS MAKES A DIFFERENCE

I am very happy to see your articles emphasizing the benefits of exercise and weight loss for cancer survivors.

I have been working in the fitness field for over 20 years and running a cancer survivor exercise program (Livestrong, available for free at most Ys) for several years now. I was not prepared to see the drastic improvements made by the participants in our 12-week program! The most recent session, which ended in December, saw an endometrial cancer survivor go from a 155-pound leg press up to 410 pounds. I’ve also witnessed a lung cancer survivor go from not being able to walk/bike a full minute to walking/biking for 20-30 minutes, as well as taking a spin class. These are just to name a few.

They all have seen improvements in balance, flexibility and stamina, as well as strength and cardiovascular improvements. Also, all have reported feeling better about themselves and experiencing less depression and better sleep. Some saw lower blood pressure and weight loss. People have also made friends and workout buddies and shared their issues as well as all their achievements.

Please, if you are a cancer survivor or patient, consider engaging in some type of exercise. The results I have seen have been remarkable.

Lynne Richard Campbell

CES/Cancer Exercise Specialist, ACSM & NFPT

Master Level Certified Personal Trainer

BROCKTON, MASSACHUSETTS

EXERCISE MATTERS

I just wanted to thank you for the great article, “Size Matters,” in the 2016 Fall issue. I am a personal trainer who has seen firsthand how exercise benefits those recovering from cancer. I also appreciate the view you gave from people who gain weight during recovery, and how important exercise is during this time. The findings from the studies you quoted are very encouraging, and something I can use with my clients to motivate them to continue their weight loss.

Thank you for all you do to give quality information about cancer and those who fight it. Keep up the great work.

Kevin Buchanek

LONGVIEW, TEXAS

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