Less than two months ago, my colleague Dana Jennings told me that he was looking for a way to write about his prostate cancer diagnosis and treatment. Days later, he submitted his first post, “The Good Cancer,” which appeared on Nov. 11. Since then, the Well blog every Tuesday has featured weekly insights from Dana about his experience as a prostate cancer patient living with an aggressive form of the disease.
Recently, Dana took part in the Best of Well podcast to talk about life as a prostate cancer blogger. Below is an edited transcript of our conversation.
This has been an amazing response by Well readers. We’ve literally had hundreds of people respond to what you wrote and talk about their own experiences. Were you surprised that that many people connected with your story?
I was surprised. I knew there would be a strong response. I think men and their caregivers are hungry for honest talk about prostate cancer. But I feel stunned and overwhelmed in a good way. When I got home after the first post appeared, I told my wife, “Suddenly, I feel like I’m The Beatles of prostate cancer.”
Prostate Cancer Journal
One Man’s Story
Dana Jennings blogs about his experience with prostate cancer.
As a journalist I don’t think we give enough attention to this issue. There’s such limited information. When you were diagnosed about seven months ago, did you find there was adequate information for you?
There’s lots of information, but I think when you first get diagnosed there’s lots of conflicting information. There’s a whole range of treatments to consider. There’s grappling with your insurer. I didn’t find as much clear and honest talk as I thought I might find.
When I’ve had conversations with men I know about prostate cancer and we start to talk about some of the realities of life after treatment — the fact that sex is different, for instance — they’re shocked by the details. I found there is not a lot of detailed discussion of what everyday life is and the little things that change. I feel like that’s what you’re bringing to this conversation. Have you found yourself surprised by the weird stuff happening to your body?
Even the littlest thing — when you have a catheter post-op, often you’ll get a thing called a bladder spasm, which basically makes it feel like you have to urinate all the time. This started happening, and I called up my urologist, who’s a great guy, and he said, “Oh, yeah. That’s a bladder spasm.” So all of these small details accumulate. I don’t think there’s much talk about bladder spasms going on.
What’s been really cool on the blog is that men and their wives and their families have started to use blog posts about prostate cancer. Communities have developed, and they start talking to each other on the posts. What I’ve seen is that that kind of detail is what they want to know. What else are you trying to do with your column?
It’s been a little more than seven months since my diagnosis, and I had surgery this past summer. I really have an overwhelming urge to testify, to talk about it. Theoretically you can put three prostate cancer patients in the same room on a Sunday afternoon in front of a football game, and they’ll kind of go “Yup, got prostate cancer. How ‘bout them Patriots?.’’ You need to be a little more forceful to try to make men discuss all the issues.
I was interested how many women with breast cancer are also posting and can relate to your story. Did that surprise you at all to hear people with other cancers relating to you?
It drove home for me the parallel between breast cancer and prostate cancer. Prostate cancer is behind the curve as far as awareness.
Is there another parallel? Does prostate cancer affect your sense of self? I know for women, losing your breast — women talk about how hard it is to date after breast cancer.
Right now, I’m having hormonal therapy and I’m taking a drug called Lupron which suppresses testosterone. The side effects I’m feeling already are hot flashes, cramps, I’m really hungry, headache — these are emasculating things. The side effects after the surgery itself, even if they’re short term, are impotence and incontinence. These are difficult things for men to talk about. It flies in the face of that all-American image of the American male who is buying his half-ton pickup. We all have chiseled jaws, and we’re tough guys. But when you’re a tough guy, you’re not encouraged to talk.
A lot of readers have commented that they find this incredibly brave and generous on your part for sharing such personal insights. Do you feel brave?
No. There are some catchphrases surrounding cancer and other serious diseases that I’ve come to bristle at. I don’t feel brave. I feel that I’m willing to talk about myself as an experiment of one. I don’t much like the phrase “battling cancer” — it’s a testosterone-suffused image about how you deal with disease. The metaphor I prefer is that it’s a dance with cancer. That’s much more subtle. My two sons are 19 and 22. I do want to set an example for them about how you can be a grown man and face a difficult situation. That’s important to me.
Dana’s regular column will return next week. To listen to the podcast with Dana, click on the link below.
Listen to the Podcast (mp3)
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. 
From 1 to 25 of 33 Comments
I was worried when there was no weekly prostate cancer post by Mr. Jennings this morning, so I am glad to see that he will continue to add to the Well blog weekly; his posts about his prostate cancer journey have been a real help to my family as we go through this with a family member. First I read the transcription of the podcast conversation, and then I listened to it, because after watching the video he made last week I feel like all his readers have a more personal connection with him and his story. It is helpful to hear his voice, literally and figuratively. He may not think he’s brave, but he is an excellent writer and storyteller, and I thank him.
— LynnI’ve learned so much from this series. The transcript convinced me to listen to the podcast, too–and that’s the first time I’ve done that. Thank you, TPP and Dana! May 2009 be good to you.
— HeronThank you so much for transcribing this conversation. Not all of us can listen to the podcasts.
Prostate cancer has not touched my life directly, but Dana’s words have touched my heart. I am always moved by his story.
— LouiseI viewed your video and have read your blogs. I too underwent a radical robotic prostatectomy at M D Anderson Cancer Center in Houston on July 2, 2008. Being a 61 year old with my youngest son being 16 years old and in his Junior year in high school, I can relate to the emotions that were present in the meetings with the physicians. My daughter is a Occupational Therapist in the Houston area and inquired with the local physician in Baton Rouge, LA about therapy sessions to strengthen the muscle to overcome the incontinence. Enrolled with Brown-Rodgers Therapy group in Baton Rouge, LA and through their sessions, incontinence was cured within 4 months from the operation. Keagle exercises were not working, Latest checkup indicates that I am now cancer free. Keep the blogs coming and good luck to you. Fred
— Frederick DuplantisI have a frined father at have caner and I’m worried about he all the time and all the time. Can people died with cancer, the cancer he his is in the brain. Put if anyone can promble me to tell my frined that his father can died or not for it beacuse vrying about it all the time. I trying to help my frined out all the time.
— MichelleLikewise, I have never liked the “battling cancer” metaphor, and your notion of it as a “dance” feels closer to my reality. Nine months post surgery, I don’t feel I’m at war or battling anything. It’s more about paying attention to what’s happening, like it or not, and then responding and adapting and accepting as best and as gracefully as you can. Accepting and adapting as gracefully as you can is the secret to living, i think, with or without cancer.
— barryDana and Tara, your focus on prostate cancer and the patient experience is much appreciated. I have a friend in Montgomery, Alabama, Laurens Pierce, who has taken it upon himself to speak to anyone and everyone about his positive experience at University of Alabama Birmingham. Laurens travelled 1.5 hours, each way, each day for his tomotherapy treatments for prostate cancer. He’s become a passionate believer in the technology, not because it’s “cool” or because it was “convenient” for him, but because he simply felt well during treatment, and because his cancer is undetactable two years after treatment. Laurens unabashedly speaks to church groups, co-workers, and the guys at the country club about the importance of being checked, and of doing homework on all treatment options. His passion comes from experience, and that is the key. Thanks for helping remind us all of this.
— ktoDana: Thank you for your blog. This type of honesty in dealing with the everyday reality of living with a chronic illness (over 50% of those diagnosed with cancer are alive 5 years later) is desperately needed. I do have to correct your belief that no one has been doing this prior to your and other recent blogs. I have been talking about my cancer experience since 1982 when I was diagnosed with Hodgkin’s Disease (lymphoma) at the age of 25. In the late 1980’s, I became involved with a group of cancer survivors who were sick of being thought of as victims who would probably die. This small group founded the National Coalition for Cancer Survivorship. NCCS is the oldest advocacy group that advocates for ALL cancers. We all had different cancers and we did not want the breast cancer folks competing for funds and attention with the prostate cancer or colorectal cancer group. There are many issues that affect ALL people with cancer, such as access to quality cancer care, negotiating with insurance companies and employers, talking to family members and coworkers, deciding when to end treatment or whether to enter a clinical trial. I think you get the idea.
I want to make your readers aware of a free resource that is available from the National Coalition for Cancer Survivorship and is a joint project of cancer survivors, cancer social workers (AOSW) and cancer nurses (ONS). We wanted to get everyone’s perspective and information. The Cancer Survival Toolbox (www.cancersurvivaltoolbox.org or 877-NCCS-YES) is an award winning resource for cancer patients that teaches a set of basic skills to help those diagnosed with cancer make their way through diagnosis, treatment, and return to life after treatment. These skills are Communication (you need to know how to talk to your doctors and what to ask; how to talk to family and friends, etc); Finding Information (and learning to tell the difference between good information and bad); Making Decisions (once you have the information you need, you have to decide on a number of things, treatment, whether to continue working during treatment, where to go for treatment, whether to use complementary methods of treating cancer); Solving Problems (problems will always come up in any situation and you can handle the problem by using the previous skills); Negotiation (the solution to a problem is rarely an “either/or” situation, negotiation and compromise may lead to a better way to handle a given situation); Standing Up for Your Rights (learning how to advocate for yourself and others). These were the original basic skills in the
Cancer Survival Toolbox. The project has gone on to develop programs on First Steps for the Newly Diagnosed, Topics for Older Persons. Finding Ways to Pay for Care, Caring for the Caregiver, Living Beyond Cancer, and Dying Well-the Final Stage of Survivorship.
I began working on this project when I was a young Hodgkin’s survivor and have continued to work on it through my diagnosis with skin cancer 20 years later, and breast cancer 25 years later, then a recurrence of my breast cancer, with metastatic disease, that occurred this year. Through all this time, I spoke about my experience at survivor conferences, medical conferences (to inform the doctors who are sometimes completely unaware of how their treatments affect someone or their family), nursing conferences, and social work conferences. I have been part of many government programs, including testifying before the President’s Cancer Panel on Cancer Survivorship in the Adult. I have already sent numerous emails to Pres. elect Obama about healthcare reform and my willingness to work on access to quality cancer care for all Americans until I draw my dying breath.
I have also given workshops on intimacy and sexuality for cancer survivors for many years. The men in my workshop usually give me the feedback that they really didn’t want to come, they didn’t plan to stay for the whole thing, but they are very glad they did. I present the information “matter of factly” and “with humor.”
I emailed your blog to a friend who was recently been diagnosed with prostate cancer. I think this would be an excellent resource for those newly diagnosed patients who do not even know what they should be asking. May I suggest that you ask your oncology/urologist whether they are interested in making a handout for patients with the basic common sense information on your blog and the links to your blog and some resources for patients, such as the National Cancer Institute( http://www.nci.gov). I am always surprised at the number of people who do not know that the government provides very good information about cancer at no cost to them.
I know this is long, but your blog and interview really stirred something in me. By the way, Dana, I grew up near Montclair, NJ.
Debra
— Debra Thaler-DeMersSurvivor of 4 primary cancers 1980-2008
Terminal Breast Cancer 2008
Your blogging is providing the opening for countless new conversations and education about prostate cancer. However, there is one enormous and valuable resource which to date, hasn’t been mentioned, and so I am guessing, hasn’t been tapped by you and others who have shared their experiences with prostate cancer. That is nursing research and applied nursing research which translates to effective patient care and prostate cancer management strategies.
Since the NYT comments structure doesn’t easily support links, and I don’t want to gum up the site, I’m going to try to post just two, and guide you to the National Institute of Nursing Research website and to a basic Google search results list.
Most of the public and healthcare reporters aren’t aware that nursing research provides one of the highest ROI. Oncology nurses in academia, research and clinical practice strive to improve care which facilitates informed health decision making, facilitates patients in retaining control over their bodies, lifestyles and health choices, and which aim to provide care which minimizes pain, discomfort and impingement on daily life activities.
http://www.nih.gov/about/almanac/organization/NINR.htm#mission
http://www.google.com/search?hl=en&client=firefox-a&rls=org.mozilla:en-US:official&hs=H9x&q=nursing+research+prostate+cancer&start=20&sa=N
— AnnieAs a woman who has just undergone three surgeries for breast cancer I too despise the “battling cancer” as well as the “cancer survivor” terms. This has been a journey — a roller coaster ride of hope and despair that has taught me a great deal about myself, those that I love and life itself. I will never be the same person I was before the cancer and I’ll always be fearful that it will return… but I’ve also learned to let others take care of me, to take better care of myself, to be present in the moment, to accept the things that I cannot change, and so much more…I don’t consider myself “battling” cancer…I’m trying to learn as much as I can from it. Oddly enough it’s been a gift that has enriched my life in ways I could never have imagined. It’s made me a calmer, more loving person that can joy in simple things.
I’m looking forward to a happier — and healthier — 2009. May it bring us peace in the world and in our hearts…
— DonnaThank you for addressing the idea that if we have cancer we are “brave”. I’ve had so many people say things like “I could never do what you’re doing” and my response as politely as possible has always been, “Yes you can and you could and you would”. The alternative to dealing with cancer is just not an option.
May you have a happy and healthy New Year!
— aftercancerKate - http://aftercancernowwhat.blogspot.com
Blogging about the experience, including the information you don’t hear about all the time, and including the emotional and personal ramifications, is a great service to the community of people with cancer and the people who care about them.
My father was also a cancer blogger (http://diehlmartin.com/cancer.html), and my mother continues to receive email thanking them for pictures of the port and the procedures, details about the medications, and sharing the life he lived for three years with pancreatic cancer.
Thank you for writing for the public so we can understand more about it.
— MarieIt’s great when people share the details of their treatment…and their reactions. I knew about the side effects of chemo for breast cancer– did not realize they were similar for prostate cancer.
Getting accurate information is the inital phase of being able to make a proper judgment, about anything, and for the most part have mostly benefitted from the personal stories. (Sorry, that Jane Brody had such a terrible time with her knee replacements — I have heard other much better stories from other joint replacement patients. )
Can anyone do a series on dental implants? beginning with bone replacement?
— “Hetty Green”Thank you for, “There are some catchphrases surrounding cancer and other serious diseases that I’ve come to bristle at. I don’t feel brave…I don’t much like the phrase ‘battling cancer.’” My mother died of breast cancer a few years ago, and I also bristled at these phrases. Mom didn’t “battle” cancer, she endured it, and eventually succumbed. Yet people always say, “died after a brave battle with cancer.” Having it does not imply a battle, whether you survive or don’t.
— John BThank you, Dana, for your blog. Having just returned from my 27th radiation treatment and enjoying a half-hour nap, I certainly appreciate you sharing your story. It’s comforting to know that the symptoms I have are not imagined. Reading and hearing about your experience makes mine easier to understand and tolerate. I look forward to your next post.
— don andersonThanks for doing this Dana. What goes around (eventually) comes around, so I hope you are receiving lots of “good karma” from the universe for your attitude, honesty, and efforts on behalf of cancer patients and their families…..especially those of us dealing with prostate cancer which is way “under discussed”.
— TorreI have a question for you and your readers: Has anyone been fired because of their cancer diagnosis? My husband (age 50) was diagnosed with early stage prostate cancer last March and had the Davinci robotic prostatectomy procedure on May 28th. He returned to work full time mid-June after only 8 days off work. He was fired from his job Aug. 24th with no warning, no cause, no negative feedback on his job performance. He was only given as severance one week’s pay… and we had to start paying Cobra insurance rates Sept. 1! “Coincidentally”, he was terminated 2 weeks to the day after the owner of the company told him the company could not change insurance carriers as promised/planned… due to my husband’s cancer!! We live in Texas which is an “at will” state, meaning employers can hire and fire at will….but it doesnt’ seem like this should be legal. Are there any resources or organizations that specialize in legal matters/employment law affecting cancer patients that you can direct us to? Certainly my husband is not the first person to be fired because of a cancer diagnosis and/or the subsequent effect of an employee’s cancer diagnosis on the employeer’s health insurance. We’d greatly appreciate any help or guidance you can give. I know God opens doors for us all, but these hallways can really be tough to navigate.
The item about finding common ground with breast cancer patients I found interesting. My one interaction (at a local cancer support center) with BC patients — 3 of them — was that since I didn’t have breast cancer, I couldn’t possibly know anything about anything and Go Away!
I did go away… Haven’t been back to the center since. Perhaps I shouldn’t have been so sensitive but total rejection while at my most vulnerable still brings me nearly to tears.
— Dick WexelblatDear Dana
— David NelsonYour HOPE of igniting personal, honest, and down-to-earth conversation within our fraternity, and among all those close to us whom touch our lives, has grandly been realized! Just this moorning my second daughter sent directiones to your blog. Stage 1 Gleason 7, I am entering my second month of recovery; laproscopic radical prostatectomy. My surgen and health care professionals were careing and exemplary in their practice. Each day I notice improvement in my return to health. I seems three words in particular have taken on new meaning; bittersweet, perspective, and patience! I also rely on the Serenity Prayer for comfort and HOPE throughout each day.
You and I (and many others I know) are blessed with familys that are beyond compare in their unconditional love and support. I will close for now with a heartfelt thank you and God’s blessing to you and your family. Look for the good / watch out for the bad. The Ol’Hazbn
Dana:
Yesterday it was eight months to the day since my procedure.
There was a fair amount of crying back at the beginning, in particular during those weeks between the biopsy and the surgery, though not so much since then. But yesterday I cried again.
When it comes to all the ways things might have turned out, in some ways - so far - I have been lucky. In the ways that I haven’t been so lucky I would say that my experience has been far from unusual.
For example, for nearly eight months I was incontinent. But, while it has indeed taken eight months, finally, within the last week or so I have gotten to the point where I don’t need to wear a pad anymore. There - I just coughed - and nothing happened. I can even sneeze and the only thing that comes out of me comes out of my nose. It’s wonderful, it’s terrific and I never thought I would see this day.
The thing is, this morning I was going through my closet looking for a special pair of heavy socks when I came across a shopping bag that I didn’t remember putting there. And there were all my boxer shorts.
Isn’t this ridiculous? There they were, several dozen pair of them. Nothing special - most of them from The Gap or Old Navy but I’d forgotten, frankly, all about them. And then it all came back to me.
The weekend before the surgery, going off to Target with my wife, a copy of the poorly xeroxed instructions from the surgeon in my pocket - picking up a couple of pairs of loose pajama bottoms for the week during which the catheter would be in, and, also, a pack of briefs - just in case - because if pads would be needed afterwards boxers wouldn’t be able to keep them in place.
And little did either of us imagine what, when it came to the continence, the next eight months would be like. The accidents on the train, the accidents in the office, the humiliation and the rest. Women, by way of example, are used to hearing the sound of a strip peeling off a pad in the next bathroom stall. Men, I can tell you, are not.
What I confidently - for some reason - assumed wouldn’t be a problem, and then just as confidently assumed would right itself in a few weeks or a month or two became a condition, a current-state; it became the way I was. It didn’t go away. And, by the by, by the time eight months had gone by I’d become the proud possessor of quite a few pairs of briefs and boxer briefs.
So, there they were this morning - all of my boxers, lying there, waiting for me patiently in the back of the closet. I’d forgotten about them. And now I can wear them once more - because finally I have control again.
Seeing them, lying there folded half-neatly, all their plaids and stripes clashing - I couldn’t help myself. I broke down.
So, here’s hoping that in the New Year you have opportunities to cry like this yourself.
— M.Your blog has touched so many of my own memories. Not that many years ago I was diagnosed with prostate cancer that also ‘took a turn towards the aggressive.’ Surgery was followed by progressively more powerful chemical and hormonal treatments. And all the while, well-meaning friends would tell me how ‘lucky’ I was — because it was — after all, ‘only’ prostate cancer. And all the while, the hormonal side effects continued to morph my body and strain my own sense of identity. Somewhere along the way I commented to a friend that this most male of cancers contains a nasty dirty joke - it leaves you with a nagging question of whether you’ll ever be seen as a ‘real man’ again.
Friends, those close enough not to squirm and change the topic when brought up, along with the woman who loves me, have helped me recognize that the ‘me’ that’s always been here is STILL here. Side effects can wane, or can be wholly or partially treated, accommodations on how one does things can be made — and when all is said and done, you realise that a life of love and passion are still possible.
My doctors tell me that the chances are very good that I’ll die WITH this cancer but not OF it. And it’s always a matter of those chances, those odds. Still, and although cancer will be companion of mine forever, it will not define my life.
So — for your blog postings, for your honesty in telling the stories of Cancer World, I thank you. As do my friends who’ve never left my side.
— F. AlcottMy husband has prostate cancer. Diagnosed
in 1992. He is now 81. He had the radical
surgery procedure. He did all the exercises
and never had problems with incontince.
He continued to work part time and play
golf and watch his PSA numbers every
six months. Our sex life really went south
after that…but not our love and caring for
each other.
In the last two years his PSA numbers started
to double and he is on Lupron insert. This
is not such a good treatment as it makes him
very tired. So, up until this time…he was
doing all he wanted to do.
He did not have radiation treatment after his
surgery. That was a good decision we think,
as he had some very good years after the
surgery.
When he goes to get the insert out of his
arm, we will have to make a decision whether
the side effects are worth it at this stage.
That will be his decision. We know at this
stage its patch, patch. But sometimes, it
just has to stop…and he might be getting to
that point.
But for you younger men…do the exercises and
— Lorrie S.with the new techniques maybe you won’t
have the sexual side effects. Besides, there
are other sex games you can play besides
intercourse.:o)
Dana, I hate the ‘brave’ , ‘battle’ and ’survivor’ phrases thrown at cancer patients. We’re people trying to stay alive. The heroic descriptions cloud the message and get so tiresome. I find it alienating.
I love what you’re doing here. Your honesty and openess is so refreshing. Thank you.
— ZingoI found the comparisons between breast cancer and prostate cancer to be so true.
Although as a nurse and a woman who has had breast cancer, there seems to be more of a discussion about how prostate cancer can impact sexual function, and much less conversation concerning how the treatment for breast cancer can cause female sexual dysfunction or FSD.
I am actively involved with The Women’s Sexual Health Foundation and because of my personal experience I felt compelled to write an article for the foundation’s Women’s Sexual Health Journal on the topic of cancer and its impact on intimacy. Ultimately the entire issue of the most recent journal had articles contributed by some of the experts in the field. The journal is guided by the genius of its Editor, Dr. Stephanie Buehler, who wrote a stunning editorial too.
This issue is posted for all to view at http://www.TWSHF.org and is an effort to offer guidance and answers to women and men.
Lisa Martinez RN/JD
TWSHF
FROM TPP — Hi Lisa. I’m happy to have you commenting on the blog.
— lmartinez.
Thank you Tara.
I found Dana Jennings’ After Cancer, the Echo of Desire so refreshingly honest.
Frankly, not talking about all the quality of life issues that impact us due to cancer is not healthy. That includes intimacy/sexual function concerns. Research shows that between 50% to 90% of cancer patients will have problems with sexual function.
I would bet most people are not aware of those statistics.
What is most important is that if you are having a problem, you should speak with your doctor. If your doctor cannot assist you, then do not hesitate to ask for a referral or speak with those in cancer support groups who may know of a doctor or therapist who has helped them. If it is a concern– Don’t give up.
Lisa Martinez RN/JD
— lmartinezTWSHF
“The side effects I’m feeling already are hot flashes, cramps, I’m really hungry, headache — these are emasculating things. ”
I can see the impotence part being described as emasculating, which you did not even do here. However, while some of these other side effects are associated with menopause, they are quite common with many illnesses of both genders.
— jack