Every week, New York Times editor Dana Jennings writes about his experiences living with prostate cancer. This week, instead of his regular blog post, Dana has invited us into his home to meet his family and learn more about his treatment in the latest Well video, “Living With Prostate Cancer,” produced by my colleague, Times video journalist Dave Frank.
Prostate Cancer Journal
One Man’s Story
Dana Jennings blogs about his experience with prostate cancer.
In the video, he talks about the overwhelming response from readers since he began writing about his cancer in mid-November.
“I think being willing to be blunt and honest about having prostate cancer really gave this group of men and women permission to talk about things that I don’t think any of them have talked about,” Dana says. “Literally, I feel since that first post went up on November 11, that my life has changed.”
Hear more from Dana by watching the full video, below. Then join in the discussion by adding a comment. To read all of Dana’s past posts about living with prostate cancer, click on the Prostate Cancer Journal icon, “One Man’s Story,” above.
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From 1 to 25 of 88 Comments
Thanks for the video, it is so heart felt. Surprisingly what strikes me is how very different we all are in some basic ways. I also came down with stage 3 prostate cancer, a year and a half ago. Yet my reactions and my feelings about my life take quite a different path than yours, Dana. I feel like I should be able to say more, how I am different, but it just doesn’t fit into a short one way comment. On the other hand I have been able to relate strongly to some of the things you have written in this series, and have felt close from that shared understanding. Keep it up, please.
— BillDana, thanks for continuing to demystify prostate cancer and encouraging men…and those who love them….to speak openly about detection, treatment and coping with the effects of the disease. I’m a 10-year survivor and currently serve as a trustee of the Urological Research Foundation, whose medical director, Dr. William Catalona, is the noted PSA pioneer. Good information is available at our URF’s web site: DrCatalona.com. Early detection has helped many women survive a breast cancer diagnosis and men need to also know that early detection of prostate cancer can greatly improve their survivability.
Thanks for sharing your personal experiences,
Richard “Dick” Ward
— Ward in KCKansas City
I live in Exeter, and recently met your sister. I was so impressed with how she spoke of you. The way she described the love and respect she has for you blew me away. She talked about how you were recently diagnosed with prostate cancer, and how concerned she is for you. She said you wrote for the Times, and I knew immediately that I had been reading your story. My father had prostate cancer over twenty years ago. I wish he had been able to view life the way you do, especially having the ablility to share. You are an amazing guy, and your family is so lucky to have you.
— gail kaphan(please only post if you want to)
Dana,
Thank you so much for your story. I lost my mother to colon cancer almost six years ago. The year that we lived with her cancer was beautiful, tragic, funny and infuriating. Listening to you talk about how you and your family are coping brought back so much.
Now, I am an oncology nurse. I take care of patients in many different places along the arc of their disease– newly diagnosed and fresh from surgery, long-time survivor managing the flare up of some complication, and at the end of life. There is no way for people to be prepared for the rabbit hole that is a cancer diagnosis, but I do believe it helps to have the stories of people who have gone before. Thank you.
— Jessie HollandMr. Jennings, the light is there at the end of the tunnel. Hopefully you’ll get off the Lupron soon, that stuff is a HUGE drag but if you can get off it your life will improve a hundredfold. I went through this and thankfully I had robotic laproscopic surgery which spares as many nerve endings as possible. My PSA’s went down to next to nothing and scans reveal nothing untoward, so I’ve been off Lupron for 6 months and my sex drive is back as well as many of the other testosterone-fueled things, and the hot flashes are gone too…LOL!!! May I wish the same for you my friend…it’s a scary trip.
— RickThank you is insufficiant. Your NYTimes series has become a virtual support group. By inciting emotional discussion, you have helped many men feel safe in exploring their emotional response to hearing and “feeling” thier diagnosis. And, thanks to TPP, for her years of reporting on “our” disease.
— Darryl Mitteldorf, LCSWIf you are a prostate cancer survivor with diabetes, let your doctor know that Januvia, the most frequently prescribed new drug for diabetes, is not safe for you.
Januvia works by inhibiting a gene, DPP-4. Recently published research concluded, “inhibition of CD26/DPPIV [a.k.a. DPP-4) may be a trigger of PCa metastasis.”
The study establishing this was CD26/dipeptidyl peptidase IV regulates prostate cancer metastasis by degrading SDF-1/CXCL12. Sun YX et al. Clin Exp Metastasis. 2008;25(7):765-76.
Family doctors and most endocrinologists are not familiar with this role for DPP-4 and are prescribing Januvia to middle aged patients in the risk group for prostate cancer.
No research was ever done to see what the impact of inhibiting this tumor suppressing gene with Januvia might have on prostate cancer–or for that matter on melanoma, ovarian cancer, and lung cancer, which other research has found to be cancers which grow in response to DPP-4 inhibition.
Merck claims Januvia is safe based on less than 3 years of research on the drug, but the cancer testing involved in the drug approval process did not explore the novel pathway through which the drug could promote cancer. Because doctors prescribing this drug are not aware that prostate cancer might be a side effect–especially given the age group the drug is being prescribed to–the weak aftermarket reporting system used for drugs already approved is not picking this problem up.
Until the research is done to determine if Januvia’s 24-hour suppression of DPP-4 is leading to more metastatic cancers, no one who might be harboring cancerous cells in their prostate should take Januvia. It is too risky.
Jenny Ruhl
— Jenny Ruhlhttp://www.bloodsugar101.com
Please allow me to mention our grass roots campaign to increase research funding for Prostate Cancer. Please read and sign our Petition to Make Prostate Cancer a National Priority, at http://www.prostatecancerpetition.org If we don’t speak up, who will?
— Darryl Mitteldorf, LCSWThank you for sharing your and your family’s story. I have added you and your family to my prayer list.
— David - OrlandoThank you for sharing your story. I too had prostate cancer and decided to cure it with proton radiation at Loma Linda, Calif. I was fortunate to have more research on the table before I was officially diagonized.
I choose proton primarily because I would dodge many of the post complication via surgery. So far, so good. I took luprin too with a 90 days shot that seemed to last 2 years as to the affects.
Keep talking and keep telling your story; we men are not good at taking care of ourselves much less doing our homework.
Joe Mackin, 865-684-9609
— JD MackinAs a family member - both daughter and wife - of men diagnosed with prostate cancer, I just can’t begin to tell you what a terrific public service your weekly posts are. I hope you will be both willing and able to keep them going for a long time. I had never been a regular follower of a blog before this, but now I look forward to Tuesdays, and I have told so many people about your wonderful writing. While your posts are probably quite cathartic for you, I hope many doctors are following your story and sharing it with their patients, since we can all learn so much from each other’s stories. Thank you, Mr. Jennings, and best wishes for a healthy 2009.
— Family memberHey Dana, saw the video.You ,Deb and the boys look great. I had to laugh again about the remark about the casket truck. It happened to me also the day before Thanksgiving. I have told Deb about it so I am sure you already know. I have passed your blog to some of my friends whom you don’t know but were classmates with Evan.Keep on doing what you are doing as I have had a cake walk in comparison. Ted
— Ted KrugerI have survived prostrate cancer, having had a full prostotectomy five years ago. At age 66 I am happy with the decision I took, together with my urologist. I am amazed what you are prepared to put up with and the risks associated with your type of treatment. Life itself is at stake, by now one can accept that ones sex life is going to be curtailed to some extent. I am happy to see my grandchildren grow, develop my hobbies etc in retirement that so many who do not go the route of regular checkups are denied. Why struggle with the procedures etc that you are going through? What happens if the treatment is not 100% succesful?
— William, South AfricaAt age 53 I was diagnosed with stage 3 cancer. In 1997 radical surgery followed with PSA screening was the standard method of treatment.
— david nixI was very lucky in that all of the cancer was contained within the gland-no lymph node involvement.
Today at 64 I have a good life, although I would like to have my former sex drive back. The current erectile dysfunction medications simply don’t work.
I have lived on to see my daughter marry; she will start a family in February. I hope that your life will continue to also be good and that you will continue this important work.
Peace be with you and your family.
David Nix
Dana: Four years ago today, I had my prostate removed. I have carrefully followed your journey. I cannot expess how
helpful your articles have been on so many levels. Friends
and colleagues easily bore of he details of recovery. Your kownledge, experience, and insight have helped me ask the right questions, and compare my progress with yours.
Finally, you have a great philosophy of life and relationships. Keep it going.
Rev. James B. Flynn,Ph.d
— Rev. James B.FlynnSouthborough, Ma.
Dana,
I just discovered your series on living with prostate cancer this morning. Many thanks for sharing your experience. Last week I discovered that I had elevated PSA, and now I am scheduled to see the urologist in two weeks. Your postings have helped me to re-focus on solutions if solutions are needed and not on the fear of what may or may not be. Thank you.
Quenton
— QuentonHi–I am also a prostate cancer survivor. I was treated 8 years ago at Loma Linda California with Proton Therapy. I am very pleased with the outcome.
— joe grassoI do not understand why Proton Therapy does not recieve more attention from the media.
I’m not out of the woods yet, statistically, but 4 months after finishing external radiation beam treatment my PSA is diving as expected and all signs look good.
I wanted to pile on about early detection. My father died of prostate cancer diagnosed in his mid-70’s so he “waited and watched” but it was the cancer that killed him and painfully, after all.
So I watched my PSA like a hawk, insisting that ANY time I had blood work done, that they include PSA. So we caught the increase early (at 58, mid range Gleason) and I was fortunate to have a new cancer center nearby so the regimen was really remarkably easy. (The toughest part was timing my coffee consumption for the optimally full bladder. But the upside was having cool ultrasound gel rubbed on my private parts every morning by charming and attractive women in white coats) I’m actually prepared (once 5 years have gone by with clean reports ;-) ) to feel a bit guilty in that my experience was not nearly as disruptive or traumatic as many I have heard described.
When, as culture and as people will we finally grasp that health care should be about prevention, detection and cures, in that order?
— KentinbznThank you for allowing us to see and hear from your family. It adds another dimension to understanding the evolution of you relating to the illness.
I also have cancer that developed over the course of the last year. So, I can relate to all that you say and, I must add, say so well.
I too am a “dreamy pragmatist,” as fascinated by the science as I am wary of the consequences.
Be well going forward.
John
— John E. SmithI do not know you. And yet, I feel I know you like the closest of friends. You’ve made clear to me that you’re a blessing to your family, and just as important, to yourself, and then finally, to the rest of us. Thank you for opening an old dusty ration container, and reawakening us to the contents it can hold for any, the sweet, caring, and afraid events that make our lives so very full! In your and our most essentially human-ness, the adventure is just as much about you as your sons, you and all those you love, you and all you invite in to this intimate exploring, roaming thing. Blessings…
— Marc ZDana, We need more people like you helping the world to talk about and learn more about prostate cancer.
At 65, I was diagnosed with prostate cancer in late 2006. Five of the 12 biopsy samples showed cancer, two of them with 50% cancer and a gleason of 6.
It was very difficult to determine the best treatment for me, and everyone needs to look at what is best for them. While there is some information available on the outcomes of the different types of treatments, there is very little information available about the side affects from each of the different treatments.
Fortunately my cancer was very treatable via proton radiation treatment which, as far as I could tell, has the least side effects of any treatment with statisically similar “cure” rates. My PSA is declining and currently at 0.6. I have virtually no incontinence and am able to get erections without drugs or vacuum pumps. The same seems to be true of the several thousand other men that have documented their results of proton radiation treament on a web site. Yet this treatment is not discussed as an option by most doctors!
Men are thrown into an emotional turmoil when we get the diagnosis and every specialist we talk to claims to have the “gold standard” for treating it. We need better information on not only “cure rates” but also on quality of life issues due to the side effects.
Dana, keep the very positive attitude and sense of humor, we all need that and you are a great role model.
Keith
— KeithWHILE SURFING I CAME ACCROSS YOUR ARTICLES. I AM 62 AND UNDERWENT SURGERY JUNE 07 I SHARE THE SAME SIDE EFFECTS IE. “ED” LOSS OF SEX DRIVE DEPRESSION. F.Y.I MY CANCER WAS ATTRIBUTED TO MY SERVICE IN VIETNAM T.O EXPOSURE TO AGENT ORANGE READING YOUR ARTICLES AND WATCHING THE VIDEO HAS LIFTED UP MY SPIRITS THANK YOU
— RALPH DEANGELISI have read most of your articles, and many of these posts, on your experience with prostate cancer. I’m 54 years old and have never had any problems with my prostate to this point. The reason I’m writing is to thank you for 2 reasons -
— Bern Galvin1. your candor in talking about how this disease has made you re-evaluate and re-define how you think about yourself as a man (not an easy thing to talk about for most men - myself included), has made me realize that I need to do the same thing. Your writings have shown me that my unwillingness to show and admit my vulnerability, and my acceptance to this point of the stock Madison Avenue definition of what it means to be masculine, are not likely to stand me in good stead as I age. I definitely need to re-assess.
2. we men are not very good at looking after ourselves. I know I tend to put my head in the sand in terms of not getting regular physicals.
Please keep up your writings. They are invaluable.
Bern Galvin
Dana, I have become a big fan of your writing.
I have been reminded that what we do (in your case, what you write) is never more important than how we do it.
And in the age of electronic communication, with a world moving toward “ambient awareness,” eloquence is as important as ever. In fact, it’s more important, now that more must be expressed with fewer words.
So thanks for teaching me something I needed to re-learn, and thanks for an opportunity to understand more about a disease that afflicts too many men.
— WesleyThank you, Dana, for revealing your self - I am also revealed in your comments. Although I am currently waiting for the results of my second prostate biopsy, as a result of my PSA moving from 4 to 8 in three months, I’ve changed since my first biopsy about two years ago. At that time, the PSA was 12, but no malignancy was found. Now, the thought of prostate cancer is not as devastating as it was then.
Considering a life without sexual penetration and release was very difficult for me. The first biopsy left me impotent for about three weeks. My recourse was to try to fully accept that I had the disease, before the first results came back negative. Now, at 65, my second biopsy go-round is much more casual. It seems inevitable now that I will have prostate cancer, just as my father did at 62 years of age. He survived until 83 dying from his first heart attack at the moment his team won their league championship.
My second biopsy will come back soon one way or the other. Maybe this is what denial feels like. But, I have already started to change how I live sexually. Now my physical component seems shallow compared to what I’m learning about the subtle arousal needs of my wife of 25 years. Now, as after the first biopsy, without a physical culmination, there is a feeling tone of shared intimacy that is much more psychological than before, prolonged and involving common daily events. Like every other significant change in my life, sexual appreciation has moved from a material level to a deeper, new interest in another.
The thought of prostate cancer now, even without a diagnosis at present, has helped me shift my thinking about life to that silent ever-present witness to my life that is not material, but none-the-less still me. It has helped me understand that humanity naturally seems to move toward deeper appreciation and awe in the reality of another rather than in one’s self only. Our lives are indeed universal, if we are able to shift to a perspective that sees one’s self in all others.
The humility that comes from the gift of aging seems to continue this human experience of melding me with everyone else. I’m deeply grateful for this human capacity that seems to lead me forward even as my body persistently informs me that my materiality is not the whole deal.
Thank you for sharing yourself so intimately. These are finally acts of love that stir hearts and lead us to ourselves in ways otherwise unavailable.
Michael
— dmbones