Faced with her’s father’s diagnosis and treatment, one teen spun into action despite her fears.
Kylee Lahners is a wonderful young woman who is supporting cancer research and helping other teens believe that they can get through having cancer in their family.
Last month, I had the honor of meeting a wonderful family and a remarkable young woman named Kylee Lahners. Her father, Ken was diagnosed with prostate cancer and was then told that his cancer was metastatic. He has endured surgery and chemotherapy and, like all of us in his situation, he is faithfully going for his blood draws and visits with his oncologist.
From diagnosis, through treatment and years of follow up, I don’t need to underscore how stressful the situation can be for a family, especially on the children. Not only is their father’s’ well-being threatened, but they can also see, and have to live with, the burden and fear that is placed on their other parent. Like other things in life, stress and fear roll down hill and our children are often the final emotional catch basins in life. Their entire sense of security can be rocked. I’ve seen my own sons react to our reality in a variety of ways, both overt and subtle.
When I met Kylee and her family, it was to accept $1,200 in donations that Kylee had collected to support research for a cure. Among her responses to her father’s struggle was a strong urge to spring into action and do something meaningful for all families. The results of her effort were visible in the handful of checks she delivered.
During Kylee’s visit, I was able to talk to her and her sister and understand how they were dealing with their father’s cancer. They are a tight-knit family and it is evident that their bond is helping them deal with Ken’s journey. I realized it might be helpful to other families and teens if I invited Kylee to hare some of her feelings and insights. Here is her essay.
My dad was recently diagnosed with prostate cancer and as an 18-year-old girl, this was something that I have never had to deal with before. When my dad was constantly going into the doctor’s office to get a bunch of tests done is when I started to get worried. I thought they would find something else on top of the cancer which would lead to something else and it would have been just a big scary mess of my dad’s health.
Once my family found out that my father needed to go in for surgery we were somewhat relieved but worried at the same time. I visited my dad in the hospital and he was doing well, which softened things up with me. I made sure I stayed positive throughout the process, believing that everything would all work out. My dad’s next step to getting cured is going through chemo; he is now half way done with his treatments. Chemo is a very strong chemical that makes my dad act differently– he isn’t his normal self. It would be 2 days after he would go in to get the injection that my father would start to feel the symptoms of chemo. It normally last for 5 days. Those five days were my dad’s toughest and also my toughest . The chemical would make him tired, feel sick and lethargic but the social aspect is what really hit me. He gets agitated really easily. He has no patience for anything, is extremely grumpy and tends to lose train of thought and hearing.
To help my dad get through these days I don’t ask him a lot of questions, do what he says right away, and am really supportive. In times like this, you just have to help out and do what you can do to make things go smoothly. There must be bad stuff before the good stuff can come. When it is so tough at times, just remember good will reward you soon, just stay tough!
If you haven’t already guessed, Kylee is also a champion in other fields. She is a 2010-11 USA Softball Junior Women’s National Team member and a 2010 Pan American Championship (18-Under) Gold Medalist.
Thank you, Kylee, for supporting cancer research. Moreover, thank you for sharing your story and letting other teens know that they are not alone. As families, we are all in this together.
I wish you, your sister and parents, many years of health and happiness going forward.
Abiraterone, 4th New Drug for Prostate Cancer is Approved in 12 Months
In the past few months I have often said there is no better time to be a prostate cancer patient than now. In my position here at the Prostate Cancer Foundation, I have uttered this statement with enthusiasm and a bit of pride. As a patient, I have said it with a healthy portion of relief and a prayer of thanksgiving for progress. Not that I want to ever need any of these new drugs, but, as I grapple with my disease and the ever present possibility of recurrence, I am reassured that these new treatments will be ready and waiting for me and my medical team if and when I need them.
To recap, the four new drugs are: Provenge (the first ever immunotherapy for the disease); Cabazitaxel, an advanced chemotherapy agent also known as Jevtana; Denusomab, marketed as Xgeva for bone health during androgen dperivatrion tehrapy; and now, Abiraterone (Zytiga). Approved just yesterday by the FDA, Abiraterone has been in development since the 1990s and will be utilized for the treatment of castration-resistant, metastatic prostate cancer following docetaxel chemotherapy. It’s a clinical break-through for patients who previously had few good clinical therapies available to them.
During Phase III clinical studies, patient response was so encouraging that those patients who were taking the placebo were given the option of switching to the drug. Good news indeed for so many.
You can read more about Abiraterone here.
Here’s to progress. Here’s to better outcomes.
A new study shows nearly half of men feel worse after having their prostate gland removed due to cancer, although three-quarters would do it again given the same circumstances.
Tens of thousands of men each year undergo the surgery, called prostatectomy, and may suffer long-term consequences to their quality of life, in particular sexual function.
In the current study, published in the Journal of Urology, researchers asked 236 men how they were doing up to 1 year after surgery.
Three out of four had regained their physical and mental well-being and had no more problems with incontinence than before the operation. But just one out of four had recovered his ability to have intercourse.
The research team, led by Dr. Adrian Treiyer at St. Antonius Hospital in Eschweiler, Germany, also teased out the circumstances that were tied to better recovery.
Men were more likely to get their quality of life back if they had a type of surgery that leaves the nerves controlling erection intact, for instance, and if they participated in a rehabilitation program.
While the study doesn’t prove that rehab is helpful — men who did better might be likely to join such a program, for example — the possibility is worth noting, said Dr. Mark Litwin, a urologist at the University of California, Los Angeles, who was not involved in the study.
Rehab programs, which are relatively new in prostate cancer care, can include talk therapy or a drug regimen to treat erectile dysfunction.
“It’s not just about recovery of the penis and its ability to become erect, but helping men come to terms with being a cancer survivor,” Litwin told Reuters Health.
Both physical well-being, such as experiencing less pain, and mental health, including feeling good and functioning well socially, were tied to remaining continent and not encountering any complications after surgery.
“Some of these things, no one can control, such as baseline PSA,” Litwin said. “But some they can. Patients can doctor-shop and find the best care.”
In the type of surgery the patients had, surgeons make a cut between the belly button and the pubic bone to get to the prostate, which is then removed entirely — so-called radical prostatectomy.
About one in six American men get prostate cancer at some point in their life, according to the American Cancer Society. But they don’t necessarily have to have their prostate removed because of it.
Some may get radiation treatment instead, or they may have their tumor destroyed by a kind of surgery that uses freezing liquids. Others may choose just to be monitored — so-called watchful waiting — to see if the cancer grows slowly enough to be safely ignored.
All of these strategies have problems of their own, and the right option depends on both the cancer and the patient’s values.
Litwin said most studies have focused on the drawbacks to prostate cancer surgery, and indeed, the new findings confirm that most men have worse sexual function after the procedure.
“Quality of life definitely takes a hit, both physically and emotionally,” Litwin added, “but ultimately, it tends to go back to normal.”
By: Kate Santich, Orlando Sentinel
At 68, John Casterline has beaten advanced-stage lung cancer, prostate cancer and throat cancer. Last month, he finished radiation treatments. Just one week ago, his doctors pronounced him cancer-free.
So what is he doing to celebrate?
Forget Disney World. Starting April 28, this Orlando retiree will be hiking 2,650 miles, from Canada to Mexico, along the Pacific Crest Trail — a route that will climb above 13,000 feet elevation and require him to average 20 miles a day.
“I expect that I will experience weather that is too cold, too hot, too wet, too dry and too perfect,” he wrote in his journal a year ago, when he began training seriously for the hike. “I will encounter rattle snakes, bears, and maybe even mountain lions. … The mosquitoes will be horrendous at times, the hills steep, the rocks sharp, the trail blocked, the wind very strong. [Sleep will be] occasionally fitful and I’ll be carrying a backpack with 30-plus pounds.”
But if you have to ask why he’s doing it, he wrote, you wouldn’t understand.
It is not simply that he hopes to raise $26,500 for the dramatically underfunded battle against lung cancer, a disease expected to claim the lives of 160,000 Americans this year — more than colon, breast and prostate cancers combined.
Nor is it about creating some kind of legacy. Though followers can read his ongoing exploits on lungcancerhike.org, the website is intended to give fellow cancer survivors hope — and to collect donations for the American Lung Association — not to brag.
“John is the guy you want with you in a foxhole,” said Eric Gray, an executive director at the American Lung Association of Florida. “He’s the guy who makes you believe anything is possible.”
Casterline is a favorite at Orlando lung-cancer support-group meetings, and Gray often uses him as a beacon of hope when counseling the newly diagnosed.
“In years past, there hasn’t been a lot to say to people other than, ‘I’m so sorry,’ ” Gray said. But now I can say, ‘Let me tell you about this guy who had Stage 4 lung cancer and this remarkable thing he’s doing …”
Casterline was diagnosed in August 2006, a week after he retired from 21 years working for 7-Eleven preceded by 21 years in the Navy. He had quit smoking seven years earlier — 1999, the same year he took up backpacking at the urging of his eldest son. By the time the disease was detected, it was so far advanced he was given a 3.5 percent chance of surviving the next five years.
“You go through these stages of grief,” he said. “For two or three days, I figured I wouldn’t make it a year.”
It may have been the only time his relentless spirit waned, and even then it didn’t last long. He researched exhaustively, interviewed doctors at five hospitals — including Memorial Sloan-Kettering in his birth state of New York — and ultimately selected M.D. Anderson Cancer Center Orlando. He went through surgery, chemotherapy and more than one round of radiation, and by February 2007 he was officially cancer-free.
That lasted a blissful 3 1/2 years, until he developed prostate cancer. He had just finished surgery for that in November last year when, one month later, doctors discovered the earliest stage of throat cancer.
“He exercised all through chemotherapy and radiation,” said Dr. Jennifer Tseng, his medical oncologist, who counts herself a fan. “Probably the only time he didn’t exercise is when he was in the hospital after surgery. And even then, he was back on his feet in no time. He’s got an amazing spirit and willpower.”
The average person undergoing radiation would still be trying to eat solid food at this point, she said. Casterline, who began competing in marathons 10 years ago, has been out hiking 14 miles a day wearing a 35-pound backpack. Within the past week, all three of his doctors have given their blessing to the upcoming hike.
In fact, in some ways, Casterline’s wife of 41 years, Sue, has been the toughest sell.
“When he first told me about this trip, I thought, ‘You’re out of your mind,’ ” she admits. “It was just surreal. But he’s a force of nature, and he’s going to do what he’s going to do. I mean, I can’t stop him.”
She did, however, make him update his will.
As she says this, the family room has turned into a staging area with 13 cardboard boxes of food due to be shipped to various post offices near the Pacific Crest Trail. Those are for the times when the nearest store is 20 miles away. Casterline has the spots numbered on spreadsheets that detail his mileage, route-elevation changes, meet-ups with his wife and two grown sons, and notations on the hazards du jour.
“Water supply contaminated — dead rodents,” he notes for Day 5, a 20-mile stretch through the scrub oak and chaparral of Southern California. “Poison oak about mile 105.”
His gear has been weighed to the nearest tenth of an ounce. All his clothing comes in at 2.56 pounds. His tent, sleeping bag, backpack, ground cover and pad: 7.66 pounds. Total, with cooking and hygiene supplies, medications, emergency whistle, duct tape, bug repellent, iodine tablets, reading glasses and playing cards: 15.97. It’s the food and water that will add an additional 20 or so pounds. Plus there’s the 1-pound ice axe he can ditch after the halfway point.
He has coaxed sponsorships from Nestlé, which owns PowerBar energy products, and Mango International, which sells a small solar panel to recharge his iPhone. He’ll also carry a pocketknife and perhaps a 6-ounce Kindle reader. But he’s still on the fence over a distress signal that alerts rescue workers you need to be airlifted to a hospital.
“It’s 8 to 10 ounces,” he said, frowning.
Though Casterline feigns fearlessness most of the time, he admits one enormous worry: failure.
“I’m very determined, mentally and physically, and I know I’ve already been tested pretty hard,” he said. “But that’s one of my greatest fears: that I won’t make it.”
On bad days — and there will be bad days — he will remember to look at the names his granddaughter has printed on his backpack in ink. “Alysan F.,” “Judy C.” and “William R.,” they read. There are 100 names in all: lung-cancer patients or their loved ones. Some he has only met online. If not for himself, then at least for them, he must try to persevere.
No one is betting against him.
“Short of getting eaten by a bear,” his wife said, “he’s going to do it.”
Survivorship. It’s what every cancer patient is striving for…, to know that they’ve clinically defeated their cancer…, to believe that it’s behind them and incapable of making another assault…, to feel healthy and unburdened once more. To be worry free of the disease. But in order to enjoy survivorship, one has to first become a survivor. Trying to decipher exactly when a patient passes this magic milestone and qualifies as a survivor is, in my opinion, the moving target.
Most medical studies classify any patient who has been treated and is still living as a survivor. Technically, I qualify for the title. Personally, I do not feel as if I can wear it yet. Yes, I survived surgery and radiation. And, for the next two and a half years, I will be surviving the side effects of ADT on a regular basis. But, have I survived cancer? That jury is still out and will be for quite some time. In my mind, the act of surviving is vastly different from having survived a threat to one’s well being. Marooned passengers may have survived the shipwreck, but I don’t consider them survivors until the whole of their ordeal is behind them.
In the past twelve months, I have talked with many fellow patients in the halls of treatment centers and in waiting rooms. It is interesting to hear how they view their place on the survivor scale. Some adhere to the concept that having been treated, they are indeed survivors. Others, like me, are waiting and hoping to hear those magic words, “you are cancer free…” in a few years. One patient (who has been treated for multiple cancers) even advised me to never label myself as a survivor. While I never had an opportunity to press this person for the reasoning behind his thinking, that statement still sticks in my memory.
I have come to believe that, scientific classifications aside, there is no right or wrong answer to this question. While our journeys have many shared experiences, we remain individuals. When one decides to consider him- or herself a survivor, is a matter of personal preference. (Of course, one’s staging must also play a role in their point of view.) If the title supplies comfort when applied early on, excellent. If it supplies motivation to press on, that’s wonderful too. Whatever it supplies to patients, if it’s positive, they should go for it when it’s meaningful for them.
All of this, of course, raises today’s question for readers: When were you, or are you, willing to consider yourself a survivor?
Today is the one-year anniversary of my diagnosis with stage-1 bilateral BC. I had a double mastectomy, two reconstruction surgeries, and a complete hysterectomy in 2010. I’m SO HAPPY to be on this end of it all. It was the toughest year of my life … and in other ways, the best. I discovered how much I was loved and cared for. THAT’S what pushed me into becoming a SURVIVOR!
Hard to believe it’s been a year ago today
that my life took an unexpected turn.
The phone-call that came April 1st, at mid-day
was my Dr., with a voice of deep concern.
I heard the diagnosis; it was far from good.
The biopsy results revealed cancer.
I had never imagined this likelihood
as I’d prayed, and awaited the answer.
I felt so forsaken, disbelieving, alone.
How could this be happening to ME?
What wrongs had I done, that I now must atone?
Would my life be cut short, needlessly?
I wanted to hope, yet I feared life’s quick end.
I lacked trust, and let doubts intrude.
But I was surrounded by hundreds of friends
whose love and prayers my own faith renewed.
Four surgeries later: pain, heartache, despair!
“Survival” seemed distant at best.
And yet, here I am, proof of healing and prayer;
knowing my life has been richly blessed.
Thank you, my beloved family and friends
for pushing and pulling me through.
You all stood beside me, through thick & through thin.
What would I have done without ANY of you?
That old voice of gloom? I no longer hear it.
I’m now a SURVIVOR & cancer-free!
God is healing my wounded body and spirit,
and I rejoice in the life left to me.
[by Ruth Andrews-Vreeland, April 1, 2011]
We Often Consider at What Age a Man Should Consider PSA Screening, But We Rarely Ask When Do Individuals Stop?
I just had an interesting conversation with an individual who asked me at what age do most men start thinking about NOT having an annual PSA test? To be honest, I didn’t have an immediate answer. It’s a complicated question and I am, to be honest, stumped. Age is certainly a factor as is the reality that there exist 24 types of prostate cancer that range from indolent to very aggressive.
We frequently read about suggested guildelines for PSA screening. I personally like the AUA recommendation that suggests a man should talk to to his doctor about a first screening to establish a baseline when he enters his 40s. From there, based on a man’s general state of health and family history, he can decide on a screening approach that is right for him. But in the almost twelve months that I have been writing this blog and the years that I have been meeting fellow patients, I can’t remember a discussion that addresses the other end of the spectrum. I would think that a vibrant, active 78-year-old man with a form that appears to be aggressive would be grateful to have the data and take some sort of action. Of course, a man of the same age could be pleased to live out his life with little or no intervention if his numbers indicated a slower growing form of cancer that he could quite possibly live with. But, how many give up, for whatever reason, wanting to know at all?
So, I have to ask four questions:
1.) Are there men out there in their 70s and 80s who choose to no longer have annual PSA screenings and why?
2.) Are there men out there in their 70s and 80s who insist on annual PSA screenings?
3.) Are there men in this age group who have been screened and diagnosed with cancer?
4.) If you were given a diagnosis of cancer in your 70s or 80s, what course of treatment did you decide upon?
Thank you to anyone and everyone who can provide some insight.
As a patient, I feel for anyone who is given a diagnosis of prostate cancer. Hearing the “Big-C” word can be upsetting enough. But the complexity of the disease—diagnosing it, trying to characterize it and selecting the appropriate treatment—can feel like insult upon injury. We need to talk about prostate cancers. With 24 known sub-types of this cancer—from non-life-threatening to very aggressive—it’s no wonder so much time is expended on debating PSA screening and the potential for overtreatment.
While debates continue, more than 32,000 American men die from this disease each year, placing it on par with breast cancer in incidence and mortality.
Oddly, I still contend that when I was diagnosed last year, I was “lucky” enough to have clear diagnostic and prognostic data to inform my decision to have a radical prostatectomy, despite potential side effects . My PSA had nearly doubled in a year’s time. As my urologist reviewed my biopsy results, the extent of the cancer’s involvement in my walnut-sized gland and my Gleason scores, I knew where I was headed. He dutifully began sketching out all treatment options currently available to patients when I told him to stop and move to the top two options. He gave me a dubious look before I shared with him that I had learned much about the disease in two years of working at the Prostate Cancer Foundation.
I was lucky once again when my surgeon’s professional instincts prompted him to remove some of my lower lymph nodes during my robotic procedure, something that’s not always done. The post-surgical pathology report upgraded my diagnosis to Stage 4 metastatic disease with single Gleason 5 cells discovered in the nodes. (Not exactly the kind of upgrades I am accustomed to in my life…) As a result, I headed into seven weeks of radiation therapy and three years of androgen deprivation therapy—a palliative treatment that drastically cuts my production of testosterone, a fuel for prostate cancer growth and proliferation. Today, I have a 60 percent chance that I will have to live with recurrent disease. I look forward without second guessing.
Not all patients have such clarity. Through My New York Minute, I meet many readers who are confused by the complexity of this disease. As a fellow patient who also works for world’s leading private accelerator of prostate cancer research, I remind them:
Science will someday, sooner than later, enable us to identify which prostate cancer a patient has and prescribe highly personalized treatments that will work best for their case. Until then, an in-depth understanding of the disease and the advice of a trusted healthcare professional remain the best tools for making treatment decisions with confidence.From: http://mynewyorkminute.org/?p=1242&utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+MyNewYorkMinute+%28My+New+York+Minute%29
A moving 10 minute short about a climber’s journey to climb Mount Everest for his sister who died from a rare form of cancer and how he raised breast cancer awareness for a charity – www.climbingforacure.org.
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