Over the last year, we’ve shared many stories from the cancer community on the PatientsLikeMe blog. This year, in honor of World Cancer Day, we’d like to highlight some of those stories:
Member Iris (Imartinez), shared her story for Ovarian Cancer Awareness Month. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Revisit her story.
Member Clare (Riverdale) shared her story – a diagnosis of non small-cell lung cancer while her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. Learn about her journey.
Member David, a member of the 2015-2016 PatientsLikeMe Team of Advisors, opened up about living with Stage IV lung cancer and how he hopes to be an inspiration to other cancer patients. David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.” Check out what he had to say.
September was an awareness month for three types of cancer – prostate, ovarian and thyroid – and the emphasis fell on early detection, something to keep in mind year round.
Man up. Get checked. #manupgetchecked This month, the Prostate Cancer Foundation (PCF) teamed up with boxing legend Evander Holyfield for a PSA. The PCF also provides helpful guides including questions to discuss with your doctor.
WhyTeal? #TakeActionNotChances The National Ovarian Coalition sponsors the WhyTeal awareness month for ovarian cancer. For them, raising awareness and promoting education about this disease is crucial in helping women to earlier diagnoses and supporting survivors – making a difference demands taking action.
Congrats to Wayne and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for yourcondition. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.
Check out Wayne’s interview to learn about his prostate cancer experience as well as how he was inspired to found Ride for Dads, an annual benefit and awareness motorcycle ride now in its third year. What drives his passion for educating other men, who he says “tend to ignore the subtle signs of aging,” about prostate cancer? And what are his aspirations for this growing event? Hit “play” below to find out.
Canadian Dan Hennessey (Goalie at PatientsLikeMe) started out as a prostate cancer patient. Today, following successful treatment, he is not only a prostate cancer survivor, but an author, speaker and activist in the prostate cancer awareness movement. In honor of National Prostate Cancer Awareness Month, we’ve interviewed Dan to learn about his experience and find out what led him to dedicate his life to bringing more attention to the condition, which is diagnosed in more than 240,000 men in the US each year, according to the American Cancer Society.
1. Tell us about your four-year battle with prostate cancer.
It has been an incredible journey for me to go from an active 49-year-old who played at least three games of hockey a week, ran, played golf and was the father of a grown daughter and a little one that was just about to turn one year old, to a man that received the diagnosis that I had prostate cancer.
I had no idea what a prostate was and had also never ever taken the time to find out or ask my doctor to find out. This all changed when I changed doctors and the new one did not take no for an answer. He referred me to a urologist shortly after my first visit and within two months the diagnosis was delivered.
In March 2006, I underwent a radical prostatectomy and an additional 33 beam radiation treatments to ensure that nothing had moved outside the prostate. The recovery was far from normal because the day before I had my surgery on March 3, 2006, my mother was admitted with terminal lung cancer and sadly passed away three months later while I was still undergoing radiation. The day of my surgery my wife, who was pregnant with our second child, discovered the day of my surgery that she has lost the baby and delivered the devastating news to me in hospital. So as you can see, no recovery is normal because cancer has no conscience and does not care if life is good or bad or what you are going through.
2. What led you to write your book? And what kind of impact has it had?
Since the treatments have ended, life has returned to as normal as it can be with some changes. We have since had another daughter through in vitro fertilization (IVF) because of plans we made prior to my surgery, which now seems to have been a great decision. I also felt the need to write my thoughts down as a way of recovery, but the deeper I got into the telling of my story, I thought that reading what I went through might in fact help others so I decided to publish my little rant.
The book – entitled With the Snap of a Glove – is a mix of sad and happy and I have had people say that they have laughed and cried while reading my book. Humor, I have found while speaking about my experiences, allows people to become more at ease with the subject matter. I have delivered the message to medical students, prostate support groups and major pharmaceutical companies and have been told on a number of occasions that they have never laughed so hard at such a serious subject but have also gotten so much out of hearing me speak. The book has sold over 4,500 copies throughout Canada and the US and has even made it to the UK.
Since releasing the book in 2010, I have continued to be an advocate for men’s health when it comes to dealing with prostate cancer. I have spoken about the importance of awareness and how it is directly tied to early detection of prostate cancer. I have also participated in a video that was developed by a major pharmaceutical company that was designed to help newly diagnosed prostate patients and has been very successful to date. You can view it at www.ihaveprostatecancer.ca. My image has also been added to a traveling photo exhibit that toured Canada in 2011 and early 2012, and was designed to bring attention to prostate cancer.
3. You’ve created an awareness video focusing on fathers and daughters. Why?
I have developed a new prostate cancer awareness campaign video that is now available. It is focused on young people and using their ability to raise awareness about prostate cancer by simply having a talk with someone in their lives. I hope this will take education and awareness to a new generation. If you have any questions or would like to discuss this in more detail please feel free to contact me.
My goal is to have as many families see this video as possible with the hope that it might even save one life. This is not a Canadian or US issue, it is a global men’s health issue and needs to be talked about. The video has been viewed thousands of times through the use of social media and will actually presented to a series of high schools during the month of November to coincide with the Movember campaign.
My objectives for the video have three levels. The first would be for one of the people seeing the video to take immediate action and go talk to a man in their life about what they know about prostate cancer and what they need to do. The second is to educate and empower a new generation that will keep this knowledge and it will grow with them. The third objective is that anytime you can encourage conversation between children and their parents, this is a good thing. I have been quoted as saying, “We as parents should listen to our children to find out what we have taught them.”
4. You’ve been cancer-free for six years. How often do you see the doctor now?
Today I am feeling very well, but again, never quite the same as I was. But life only gives you what you can handle. I see my urologist once a year and everything is exactly where it should be. Family life and the need to advocate for awareness are the things that give me strength. I was asked one time if I wished that I had never gotten cancer. That is a hard question to answer. I would not be doing the things that I am doing now and hopefully making a difference if not for prostate cancer. If I had not held the hand of the woman that gave me life take her last breath, I probably would not be driven as hard to make a difference. There are days that I want to stand up and yell out that prostate cancer picked on the wrong guy when it picked on me. The story will continue!
Fortunately, advances in diagnosis and treatment have led to a 40 percent reduction in prostate cancer deaths since the mid-1990s, and 90 percent of all prostate cancers are now discovered before they spread outside the prostate gland, according to ZERO, a nonprofit dedicated to ending the disease. One of the key tools is the Prostate Specific Antigen (PSA) test, which tests for a certain protein made in the prostate gland. Normally, very little should be found in the blood. As a result, rising PSA scores may indicate a prostate problem, which could be cancer or an enlarged prostate. Further testing with a biopsy or MRI is required to determine if abnormal PSA results indicate prostate cancer.
Who’s most at risk? The most important factor is age, as the older you are, the more likely you are to be diagnosed with prostate cancer. More than 65% of all prostate cancers are diagnosed in men over the age of 65, according to the Prostate Cancer Foundation, and the average age for diagnosis in the US is 69 years. Race also factors into the risk, as African American men are 60% more likely to develop prostate cancer compared to Caucasian men and nearly 2.5 times more likely to die from it. In addition, a family history (specifically, having a father or brother who developed the disease) doubles your risk of prostate cancer.
Do you have a hard time getting to the doctor, perhaps because of your schedule or insurance situation? Throughout September and into the fall, ZERO is offering free, confidential PSA tests via their roving testing trucks. Stops include New York City, Baltimore, Costa Mesa, Phoenix, Tucson and Atlanta. Check out the full calendar here. If you’re already living with prostate cancer, connect with the 300+ members of PatientsLikeMe who report this condition and find out how 10+ of them evaluate prostatectomy as a treatment option.