Published by
Stanford Medicine

Author

Chronic Disease, Genetics, Patient Care

Navigating a rare genetic disorder with a positive attitude

Navigating a rare genetic disorder with a positive attitude

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Carla Charter.

roam-1024x1024Seven years ago, when my youngest child was diagnosed with chromosome 12q duplication syndrome, I learned that I too had the syndrome. It’s a rare condition caused by the abnormal duplication of the long arm of chromosome 12, leaving three copies rather two.

At that point the 12q was more of a footnote to my hectic life. Syndrome or not, life went on. There was work and the children and hundreds of other things to think about, none of which the 12q really affected.

The syndrome that hadn’t affected my life too much reared its ugly head two years ago while I was driving home one night. In an instant, a highway exit disappeared from view and came back, giving me an extreme “What the heck was that?” moment. Little did I know that this episode was about to usher me into the world of visual impairments. I now have forearm crutches to help me walk. My visual distance impairment changes are frequent, and I have slight hearing loss.

Because I’m an advocate for people with disabilities, some praise me as inspirational. But I am not inspirational. I am human. There are days when I feel frustrated, overwhelmed with the changes in my life, and even a little cranky. It’s OK to admit it, because I’ve got a family who loves me through all of it. If I seem a little quiet or snappy, you may be meeting me on an off day. We all have off days — disability or not.

Those of us with disabilities also have our own way of coping with them. For me, it’s humor. It’s the reason I had a bright pink cane for a time. If I was going to have to deal with using a cane because of the 12q, I was going to find the brightest prettiest cane I could find and rock the heck out of the 12q.

Continue Reading »

Cardiovascular Medicine, Chronic Disease, Patient Care, Women's Health

Welcome to your new country: A heart patient on her “travels” with heart disease

Welcome to your new country: A heart patient on her "travels" with heart disease

11138791064_8e2989e3ee_z

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from heart patient Carolyn Thomas

My doctor once compared my uneasy adjustment to life as a heart patient with being like a stressful move to a foreign country.

I used to be pretty comfortable living in my old country, pre-heart attack. I had a wonderful family and close friends, a public relations career I loved, a nice home – and a busy, happy, healthy, regular life.

Then on May 6, 2008, I was hospitalized with what doctors call a “widowmaker” heart attack.

And that was the day I moved far, far away to a different country.

Many who are freshly diagnosed with a chronic and progressive illness feel like this. The late Jessie Gruman, PhD, who spent decades as a patient, described in a Be a Prepared Patient Forum column that sense of being drop-kicked into a foreign country: “I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”

Deported to the foreign country called Heart Disease, I too found that nothing around me felt familiar or normal anymore once I was home from hospital.

I felt exhausted and anxious at the same time, convinced by ongoing chest pain, shortness of breath and crushing fatigue that a second heart attack was imminent. I felt a cold, low-grade terror on a daily basis.

Instead of feeling happy and grateful because I had survived what many do not, I frightened myself by weeping openly over nothing in particular. I slept in my clothes. I didn’t care how I looked or how I smelled. I had no interest in reading, walking, talking, showering or even getting out of bed. Everything seemed like just way too much trouble.

Where once I had been competent, I now felt unsure.

Where once I had made decisions with sure-footed speed, I now seemed incapable of deciding anything.

And my worried family and friends couldn’t even begin to comprehend what was going on for me – because I could scarcely understand it myself. Sensing their distress, I tried to paste on my bravest smiley face around them so we could all pretend that everything was normal again. But making even minimal conversation felt so exhausting that it eventually seemed so much easier to just avoid others entirely.

Continue Reading »

Neuroscience, Patient Care

My dance with dystonia

My dance with dystonia

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate who describes herself as a “battle-clever dystonia damsel.”

4704705307_3dd45d8ed2_zMy dance with dystonia, a rare neurological movement disorder, has been a mangled cha-cha-cha with a wayward partner. Seems I keep taking steps forward then back — ever shifting my center of gravity — while engaging in a never-ending battle over who assumes the lead. In terms of mechanics, think of dystonia as a travesty of muscular timing orchestrated by the brain and executed by body parts moving off tempo. Imagine trying to master a new dance routine and your feet fly over the dance floor in scattered disarray. That’s dystonia.

Life took its unexpected turn when I was 8 and various body parts began to assert minds of their own. First my right arm insisted on straying off course when I wrote. Then the chaos spread to my left leg. In a creeping progression that eventually stabilized, a degree of unrest extended to all my limbs. Articulatory challenges gradually manifested. While dystonia is a game changer, over the years it’s become my second skin. I find it hard to recall time before dystonia.

When I was diagnosed in the 1970s, patients and their families exhibited far greater reluctance to broadcast their health conditions, especially when a disorder struck early in life. Disability was all too absent from the landscape, especially living in a small suburban town. We’d yet to witness the proliferation of the Internet let alone a grid of online media breaking down barriers and opening up lines of communication.

I didn’t encounter a soul with dystonia until my mid 20s. Often, I felt apart and alone. It was a challenge viewing my condition with any kind of perspective. How I wished there was someone out there who understood.

How far we’ve progressed over 40+ years. Accessing health information is as easy as a trip to Google to enter a superhighway, rife with two-way traffic. Significantly, information flows from patients as well as to them. Abundant resources have ushered in an era of patient empowerment where the scientific community no longer holds a monopoly on medical explanation. In this era of cyber-connection, patients have stepped forward to educate themselves, chronicle their stories and support one another. Health activism burgeons across the Web. Online support networks abound, even for a rare condition like dystonia.

Launching my own dystonia blog (Chronicles of a Dystonia Muse) seemed a rash step until I found myself amid a veritable revolution of personal sites and health communities steering disability and chronic illness into the light.

As for me, it’s the same cha-cha-cha – stepping forward, then back. But in this age of openness, I’ve moved on to a better place deep inside myself, traveling untold miles along the road to self-acceptance. The fellow patients I encounter serve as an unending reminder that I’m not alone in my health struggles and lend me critical perspective. I may not move like everyone else but at my core I’m just like everyone else.

Pamela Sloate is a health activist who is involved in an array of awareness efforts. She moderates a patient support group, advocates for the dystonia community, and advances fundraising. She holds degrees from Brown University and NYU School of Law, and her career spans law, marketing and non-profit administration. Her blog is Chronicles Of A Dystonia Muse.
Photo by Dominic Alves

Chronic Disease

Letting go of my secret about Charcot-Marie-Tooth, “the biggest disease no one has heard of”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate from Washington.

I’ve tried hundreds of different versions of my story to try to get people to understand. “I walk funny because I have Charcot-Marie-Tooth, also known as CMT. It’s named after the three doctors that discovered it: Charcot – Marie – Tooth. It’s a type of Muscular Dystrophy – but not really… It’s a genetic, progressive, neuromuscular disease that affects my legs and feet, arms and hands – and my diaphragm. It makes me tired. I’m sometimes in a lot of pain. Currently there is no treatment or cure. It’s just something I am living with.” Blah…blah…blah. I can see the person I’m talking with zoning out and I know I’m losing him. That’s hard because I’ve only just recently opened up about my CMT. I want my friends, family and the world to understand why I have struggles and limitations.

I’m 46 years old, and I was diagnosed at 13 years old. It’s been a secret I’ve kept hidden for 33 years.

The outpouring of support I received gave me the confidence and empowerment to get involved in raising awareness of the disease

CMT is by definition a rare disease, affecting fewer than 200,000 people in the U.S. Before the diagnosis, I tripped and fell a lot. When the pediatrician taped on my knee to test my reflexes, nothing happened (I always thought he just must be seeing something I didn’t see because he looked puzzled, but then moved on without commenting). I was constantly spraining my ankles and bandaging my knees from falling so much. Finally, the CMT diagnosis explained it. But it certainly didn’t do anything to help the situation other than confirm that I had a serious disease that would continue to burden my  me. I became a master of making excuses for why I couldn’t join in activities like volleyball, jogging, aerobics, hiking, walk-a-thons, and much more. Social events even upset me, and I became more isolated.

It wasn’t until my disease progressed to the point that I needed braces to help me walk that I could no longer keep my secret. While researching online for bracing options, I discovered the advocacy organization Hereditary Neuropathy Foundation. In finding the foundation, I realized I wasn’t alone: Many others felt as I did. I agreed to conduct a letter-writing campaign, letting friends and family know about the diagnosis and why I wear leg braces; doing so helped people understand why I made changes in my life in order to adapt to my CMT.

Continue Reading »

Chronic Disease, Mental Health

The art of healing

The art of healing

painting a heart

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate from Syracuse, New York.

“There’s no cure or additional treatment as all viable options are exhausted. This is your new normal.”

My gastroenterologist was stating the obvious, yet I stared at him with incredulity. I’d had my second pancreatectomy a year prior, and it failed to control my critical and idiopathic hypoglycemia and pain. I was now receiving my nutrition via IV since repeated surgeries had reduced my ability to digest and absorb food, creating erratic swings in blood sugar necessitating constant monitoring. I was stunned that this was how things would be from now on.

I cried after that appointment as images of my life prior to getting sick flashed before my eyes. Until three years earlier, I had been working as a registered dietitian and diabetic educator, I cared for two busy teens, and I lived a life rife with joyful spontaneity. After a few week of impenetrable sadness I raged at God for condemning me to this life of constant pain and uncertainty. Why me? How could I be so sick when I lived such a healthy and active lifestyle? I knew I needed help to cope with this transition. Chronic illness was a dark and unfamiliar place. At 50, my life as I knew it was over.

I had always been a bibliophile, and I used audio books when I was too ill to read. Music was inspiring and while I had countless songs on my iPod it didn’t fill my days. My counselor gently encouraged me to try something new, so I decided to visit my local art store and see if there was anything of interest. I’d taken classes over the years but didn’t consider myself an artist, so I walked through the door with trepidation. But I was immediately welcomed by a knowledgeable artist who took me in hand. We walked down the aisles and she spoke with ardent enthusiasm about the different mediums available to me. When I saw the rainbow of acrylic paints I made my decision: I was going to paint.

Immediately following my purchase, I had buyer’s remorse. What did I know about painting? I had been encouraged to pursue excellence, and this was akin to jumping off the proverbial cliff. It took two weeks before I prepared my first canvas and put brush to paper. And what transpired next surprised me.

Continue Reading »

Cancer

How I've survived survivor’s guilt

How I've survived survivor’s guilt

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Hope Aguilar.

When I was in my second month of treatment for late-stage ovarian cancer I read a friend’s post on Facebook about her friend passing away from cancer after just six weeks of being diagnosed. I was so sad about this news and about the fact that I had made it past six weeks and she hadn’t. Then when I was a few months out from finishing chemotherapy and back to teaching in Saudi Arabia, I found out that the woman who helped me when I was just starting treatment had passed from her five-year battle with ovarian cancer. I was again saddened, but even more so than before. This woman was just fifty years old and had a husband and children – she had so much life ahead of her. And that’s when survivor’s guilt first truly hit me.

I didn’t know that “survivor’s guilt” was the name of what I was feeling. I just knew that a part of me was torn. Torn between being so very grateful that I had made it (even though it hadn’t been very long) and anguished over knowing that I still here and this woman wasn’t. I did my best to not let the guilt bring me down too much: I kept moving forward, living each day to the fullest, and staying positive through all the post-chemotherapy problems I had. But every once in awhile I would get that feeling of sorrow from the guilt that I survived and that so many others didn’t. I would read article after article about men, women, and/or children who lost their battle, and I would start to ask “why?” even more. Why them and not me?

I had no significant other in my life. I had no children who needed me. “So, why am I still here?” is what I would ask and think about. If I thought too long about it I would start to cry, and as I cried I would call out to God and ask Him why. The answer that I believe God gave me was that that even though I didn’t have a significant other and children, I had people who loved me and needed me in their lives. And I still had some purpose here on Earth.

Did survivor’s guilt go away? No, and I don’t think it ever will – not completely. That said, something feels different each time that guilt pops up now. I don’t dwell on it. I remember those who love me. I think about all the ovarian-cancer awareness advocating I have done and will continue to do. I share my story in the hopes that other women will listen to their bodies thereby getting them to go to the doctor sooner rather than later. I share my story in the hopes that other survivors will share their stories too. Because when more people share their stories, more awareness will take place. And awareness is knowledge and knowledge is power.

For me, the way to survive survivor’s guilt is to live a life of purpose. To do more with giving back. And to remember that survivor’s guilt can rule you or you can rule it.  I’ve chosen to rule it. I know it will come and it will go, but it doesn’t have to stay. Not unless I let it. And I don’t, I won’t.

Hope Aguilar is a teacher of the English language in Saudi Arabia, and the author of  the book “HOPE through Cancer.” The native Texan is also a veteran of the U.S. Navy and Army. She loves to advocate for ovarian cancer awareness, travel, write, jog, and spend time with friends and family.

Cancer

My last promises to her: Advocate for lung cancer awareness and live life to the fullest

My last promises to her: Advocate for lung cancer awareness and live life to the fullest

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate from California.

Don and Penny - smallI was diagnosed with Stage 4 Non-Small Cell Lung Cancer in June 2009. I have had numerous treatments of radiation and chemotherapy for the lung cancer, and six cycles of Gemzar for metastasis to my liver. I’m one of the fortunate few because only 16.8 percent ever reach the five-year mark. I’m stable today because of the targeted therapy pill Tarceva that I’ve been taking for almost five years.

All through my journey I have kept a positive attitude, focused on good nutrition and gotten plenty of exercise. I try to live my life by spiritual principles. I feel they all play an important part in my recovery and the reason that I’m still above ground.

The bad news is that I have cancer. The good news is that cancer has taught me to live life to the fullest. I never allow cancer to define me. I rarely miss an opportunity to hike, bike, or do anything that strengthens my immune system and keeps me out in nature.

In October 2011 I met Penny Blume, the love of my life, on a lung cancer support community on Inspire. Penny left this earth on Jan. 21, 2014 after battling small cell lung cancer for 32 months. Penny and I spent our time together traveling back and forth from New York to California. She passed at my home in Santa Rosa, Calif., after trying one last clinical trial at Stanford Cancer Center.

Penny and I turned to each other for emotional support to battle our cancers and fell in love. It was after a couple of months of texting and chatting on social media that we decided to meet. Penny flew to California for her first visit in January 2012, and the rest is history.

My relationship with Penny also marked the beginning of my advocacy work for lung cancer. It started when a friend of ours asked us to post our story on a lung cancer survivors group on Facebook. I posted something, and then Penny and I decided to repost it on Inspire, since it was the site that brought us together. In September 2012 our story was shared by ABC News and Good Morning America. In the following weeks, it was shared and tweeted all over the world.

My efforts to share our story and talk about lung cancer publicly have only grown stronger since then. I support Team Draft, an initiative of the Chris Draft Family Foundation, which is dedicated to raising lung cancer awareness and increasing badly needed research funding by shattering the misconception that lung cancer is a “smoker’s disease.” I’m also an advocate for The Lungevity Foundation and have attended two of their Hope Summits in in 2012 and 2013 and participated in numerous medical advisory panels. (Penny attended our first Hope Summit in 2012 where we recorded this message of Hope.)

Two years ago I was nominated by Lungevity to be a consumer reviewer for the Medical Directed Lung Cancer Research Program for the Department of Defense. As a veteran and lung cancer survivor I’m particularly grateful I can do my part through the DOD program.

November is Lung Cancer Awareness Month, and it will be a busy month for me: I’m  doing events with Chris Draft, Genentech and the Lung Cancer Research Program.

My last promises to Penny were that I would continue to live life to the fullest and advocate for lung cancer research and awareness. One day at a time I try to keep those promises to her.

Don Stranathan is a business development manager for a technology company in Rohnert Park, Calif. who is now on disability, as “fighting my cancer has become a full time job.” When not doing advocacy work, he is at the gym spinning or out hiking, biking and fishing with friends and family.

Previously: Tackling the stigma of lung cancer – and showing the real faces of the disease and A patient’s journey with lung cancer
Photo courtesy of Lungevity

Cancer, Patient Care

Healing hands: My experience being treated for bladder cancer

Healing hands: My experience being treated for bladder cancer

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient who has asked to remain anonymous.

“I hate to be the one to tell you this, but you have invasive bladder cancer.”

That’s certainly the last thing anyone wants to hear from their doctor. And it’s undoubtedly news that doctors must dread having to tell their patients.

I owe a debt of gratitude I can never fully repay to all of those whose healing hands, both literally and figuratively, reached out to help me

I heard those fateful words from my urologist in August 2012, at which time I was informed that my best course of action was to undergo chemotherapy treatments and have my bladder completely removed. Oh yeah, my prostate had to go as well.  “You’ve got to be kidding me,” I thought. “I’m 46, healthy, and serious health issues aren’t supposed to happen until I’m old – like 70 or something.”

So began my journey of cancer treatment, which included three rounds of neoadjuvant chemotherapy and culminated in the removal of my bladder and prostate. Like many who have to get on the roller-coaster ride that is cancer treatment, my road to recovery was rocky at times.

During a bladder biopsy and resection procedure, the doctor determined that the tumor in my bladder was blocking my right ureter, putting the kidney at serious risk. I was rushed to surgery where I received a nephrostomy stent. Two weeks later, a port-a-cath (for administering the chemo infusions) was placed in my chest; and three days after that, it had to be removed due to an infection. Then came the chemo, which was certainly no picnic – I suffered from a variety of side-effects, not the least which was becoming seriously neutropenic. Later, following surgery, my heart went into A-fib and I was whisked off to intensive care.

One of the ironies of my experience: Prior to the cancer diagnosis, I had never even spent a night in the hospital.

As most anyone who has gone through this experience can attest, it really kicks your ass physically, emotionally, spiritually, existentially, and about every which way in between. The good news today, though, is that I’m cancer free and my prognosis for long term survival is very good. I feel better physically than I’ve felt since this whole circus started, and I’ve resumed most of the activities I previously enjoyed before the cancer diagnosis. Nonetheless, healing emotionally from the trauma of the whole experience – including life with a urostomy – is still a work in progress.

Recently, I’ve been reflecting at depth on my journey with the Big C. During my treatment I interacted with an untold number of health professionals. From doctors and nurses to social workers and massage therapists, scores of health-care professionals and related practitioners were involved in helping me get better. I am in utter awe when I think about the years of training that each of these individuals received; the fortitude it must take to deal with the sick and infirm on a daily basis; the medical research behind the development of lifesaving chemo treatments; and surgical procedures like the cystoprostatectomy.

I owe a debt of gratitude I can never fully repay to all of those whose healing hands, both literally and figuratively, reached out to help me. Like my feisty little 70 year-old home health-care nurse Jackie, who told me, “During chemo, you’ve got to keep moving! Get out there and walk every day, stay active. You won’t feel like doing it, but do it anyway!” I followed her sage advice and sure enough, it really did help. Jackie also coaxed me through a very rough time after the removal of my port-a-cath when I was told I would need to stuff gauze in my gaping open chest wound on a daily basis. Jackie was right there, providing me with the encouragement and support that enabled me to get this done.

Then there were the various residents and fellows who provided for my care. The competency and kind bedside manner of the chief resident in urology helped me calm down and enabled me to wrap my head around what I was facing when I was first diagnosed. The expertise, professionalism, and compassion exhibited by the fellows who were involved in my surgery and subsequent care in the hospital were also appreciated.

And let’s not forget the attending physicians, whose years of education, training, and experience enabled them to do things that 100 years ago would be considered no less than an absolute miracle.

To all those in the health-care field who touched my life during this journey, my unending gratitude. To those who are answering the call to provide professional medical care for others, my sincerest respect.

The author of this article lives in Virginia and works in administration at a large hospital.

Cancer, Men's Health

So my life will be shorter than I’d hoped – what should I do differently?

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Dave Staudenmaier.

“The news of your demise has been greatly exaggerated,” joked the surgeon when realizing I might have a rare slow-growing cancer instead of the horrifically aggressive and deadly adenocarcinoma of the pancreas that everyone thought I had.

He was right. I had “stage 4” Pancreatic Neuroendocrine Tumor metastasized to my liver. This was good news because it’s a slow-growing cancer.

Figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me

It’s also the cancer that Steve Jobs had (and died from).

I fired my surgeon and my oncologist. Not because of his humor, but because of the urgency he placed on taking out my duodenum, gallbladder, spleen, part of my stomach and my entire pancreas in a “procedure” called a Whipple. No other options were considered or offered. No calls to a PNET specialist were made – so I found one on my own.

I was also told: There is no cure. There is no remission. Treatment options are limited and inconsistent. It’s possible that surgery might have bought me more time – but my new care team understood that I favored quality of life (hence my decision to opt out of surgery) over length of my life. And thankfully, some new treatments not available in Steve Jobs’ time have worked to shrink my tumors by sixty percent.

Though we’re fighting to keep the tumors from growing again for as long as possible, it sure looks like I won’t be around as long as I’d hoped. And though the drugs are helping control this beast, I know they won’t help forever and there will be pain and fatigue and other quality-of-life issues. So figuring out what to do with my life – not getting surgery – is what’s most urgent and important to me.

My work.  Should I quit my job like so many of my fellow PNET patients have? No way! I love my job, and it has only gotten better since my diagnosis. Seemingly by providence, last year my position was changed and I now head development of patient engagement software for the large health-care solutions firm I work for. I have the opportunity to directly help tens of millions of patients – patients like me.

My family. I have a wife and three teenagers. How can I create more time to make  memories with them while I still feel good? I now pay someone else to mow my lawn and perform those other maintenance services that previously consumed much of my weekend time. We live in Florida where there’s a lot of fun things to do as a family, so we do it – spending more time together than we used to. We also blew some savings for a family vacation to Turks and Caicos. We’ve never vacationed like that before and it was awesome – something that created good memories. I want to do something like that again.

My everyday life. Fewer things to worry about means less stress. After I was diagnosed, we gave away more stuff than we kept and we don’t miss it. All bills are now auto-paid so we don’t think about them and can’t miss a payment. We have one debit card and one credit card, and we pay for most things in cash.  And we learned to say “no,” as we limited our obligations to maximize our free time. I’ve also tried new things:  So far I’ve learned how to ride a horse and how to cook. Up next, skeet shooting.

I continue to rethink and reprioritize my life, and I’m thankful that my new care team understands what’s important to me and provides treatment that aligns with my goals.

Dave Staudenmaier is Senior Director of Development for Greenway Health, where he leads an awesome team creating software products benefiting patients and physicians. Dave continues to fight PNET with the support of his wife of 23 years and three children.

Previously: Managing a prostate cancer diagnosis: From leader to follower, and back again and A rare cancer survivor’s journey to thriving and advocating

Cancer, Men's Health

Managing a prostate cancer diagnosis: From leader to follower, and back again

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from patient advocate Jim Rieder.

Caring for others has always been part of my approach to life. I built my career in health care serving as the CEO of a statewide non-profit foundation, in addition to being the CEO of seven diverse types of hospitals. Naturally, I was intimately familiar with the steps necessary for a person to become an empowered patient. But when I was forced into the role of being the patient, the initial transformation was surprisingly more intense and unsettling than I had imagined it would be.

Managing prostate cancer is a battle. Recognize it as such. Invest the time and energy necessary to empower yourself with the knowledge you’ll need to make informed choices about your path of treatment

When a person is diagnosed with any type of cancer, the obvious objective is to get rid of it completely as quickly as possible. After being diagnosed with prostate cancer in 2002 and doing my due diligence, I ultimately decided that a radical prostatectomy was the best course of treatment for me. I had the surgery in 2003, and I’m very happy to report that I’ve been cancer-free ever since. However, it’s important to recognize that there’s not a one-size-fits-all solution for treating prostate cancer.

In response to prostate cancer diagnosis, it’s critical to take a step back, take a few deep breaths, and try to approach the situation calmly and logically. Don’t let anyone rush you. There’s ALWAYS time to evaluate the medical options and get a second opinion from another medical expert who ideally is not affiliated with the same practice as the physician who provided the initial diagnosis or treatment recommendations. Know that watchful waiting or active surveillance can be viable options. Every treatment has side effects, which typically include erectile dysfunction and/or incontinence. The skill of the physician and the amount of experience specific to the procedure being performed are very important in minimizing the presence and ongoing impact of these side effects.

Some guys pursue their treatment and quietly return to business as usual without ever talking about their prostate cancer or its side effects. While I respect the option of maintaining privacy, I encourage anyone who’s facing a diagnosis of prostate cancer to reach out for help from others who have already traveled the same path, and to reciprocate down the line by helping others who will be grappling with the involuntary transition into joining the prostate cancer community. Also recognize that prostate cancer affects spouses or partners, as well as family members. Their support is also very important.

Continue Reading »

Stanford Medicine Resources: