Hi,
Am just sitting down to watch Larry King (9 pm EST) after a grueling day of shopping — for strictly utilitarian things. Join me! The topic is prostate cancer. Guests include John McEnroe (father had PC), Christopher Rose, oncologist, Michael Milken, survivor and founder of the Prostate Cancer Foundation, Joe Torre, manager of Los Angeles Dodgers baseball team and PC survivor and Gen. Colin Powell (also had PC).
Sorry for the last-minute notice. But here in the East Coast the Larry King show is re-broadcast at midnight (EST).
Will try to post a review.
Hi, Leah,
I saw the Larry King Show and it seemed more like an ad for the Prostate Cancer Foundation than providing the information we survivors or new patients might want. Most noticeably missing was any clear reference to difficulties and coping mechanisms while recovering from treatment after-effects of the kind I’ve mentioned in my book, Conquer Prostate Cancer.
Larry King did openly ask Joe Torre, former Yankees manager, how prostate cancer and its treatment affected his sex life, and Torre totally downplayed any problem, giving some sort of pollyanna answer like “it’s all good”. Heck, the guy’s glad to be alive and wanted to keep that part of his life private. I can’t blame him, but nobody, even the doctor on the panel, expressed a need to discuss such issues as ED and incontinence.
General Collin came the closest to saying it like it is, but he felt he need not get too graphic about how he functioned in the months right after his surgery.
Also when mentioning the massive cancer research he’s underwriting or hooked into in 20 countries, billionaire Milken made no reference to competing, wasteful research in the multiple billions of dollars. Of course Larry King didn’t ask him about that.
Frankly I got the impression that Milken probably arranged for the show when talking with Larry King’s producers.
I plan to write to Larry King Live’s producers to see if I can address these and related issues with a couple of leading doctors.
On the good side everyone on the show weighed in on the side of getting a routine PSA test starting at age 40/50. But the oncologist on the show didn’t quite commit to that, though he made a necessarily hasty attempt to explain why some leading medical folks oppose routine screening.
Shavua tov!
Rabbi Ed
Rabbi Ed Weinsberg
I’m with you, Rabbi Ed. In fact, I’m hoping to write a post about this for the blog. I’m thrilled that PC was featured so prominently on a prime-time TV program, but the producers just didn’t get the guest list right. The only doctor on the panel said some very peculiar things. In the introduction, Larry said that Dr. Rose is affiliated with UCLA, but I did some research and could find no association. The word “affiliated: is used very loosely in medicine. What the only doctor on the show does is administer IMRT (external beam radiation) at his clinic in Beverly Hills. Maybe this guy knows rad, but there would have been a more thoughtful discussion if other doctors participated.
Re: Colin Powell. Totally a class act. I thought Joe Torre sounded a bit silly when he said his sex life is OK or something like that.
I am going to re-read the chapters in your book about the doctor-patient relationship. I thought they were excellent.
Leah
I saw the Larry King panel with John Mac and others. The significance is that Larry King and panel made prostate cancer real and normal for the public. It is real to a lot of people – talk about it. What I can add is that I have lung cancer and am already a well published writer in dreamwork psychology. My goal in the current StrephonSays, com/blog/ is to report my thinking accurately around making decisions with doctors around what to do with my lung cancer diagnosis. I describe the experiences with doctors, the effective of their medications, and the cancer symptoms I am having. But I go into my personal fears and decisions, and information gathering. As such I and my blog become a resource for others. I have average 30 a day visitors and page hits up around 100 in the first three months. I write at an indept level for intelligent and educated people, just to let you all know what we go through when we are educated and as smart as the doctors, but not professionally educated or experienced as our doctors. It’s a dialogue always between the smart and educated modern doctor doing his and her best to apply the lastest cancer tests and treatments to an equally smart cancer carrier who wants to know why and how the doctors want to treat him and her. The StrephonSays.com/blog/ has the details of medications and symptoms, but it also has life issues, like how much surgery, radiation and chemo to get, and why and what statistics mean, and then what alternative therapies to use also, like changing the diet to more vegitarian or eat meat still, like fish. And experiences with alternative treatment people who seem to prey on the afflicted like myself and what machine was used on me originally designed by a fugitive from the United States but made and sold now from Hungary. This is adventure stuff around having lung cancer and what you go through trying to find what can stabilize or cure you.
Let it be known that the Larry King show was on prostate cancer treatment and not lung cancer treatment. This blog author suffering lung cancer. The rate of surviving lung cancer has been quoted at between 5 and 15 people surviving the required five years as the indicator that your cancer is in remission. Today my doctor told me he survived protate cancer two years now and has a 75 chance he will live ten years without his prostate cancer becoming full blown again. I, on the other hand with lung cancer have been told today I have to act now to get the right doctors and treatment in place because the tumor could grow and block my trachia, the lung breath tube and I strangle from that. My father died of throat cancer in 1984. So you read my blog, if you do, for the nitty-gritty truth only on lung cancer as I, a retired psychologist originally from California tell it in daily posts to my blog, and living in the Netherlands with a superior health care system to the United States apparently.
And as a psychologist I tell you all about attitudes in myself and various doctors, so you can better know and choose about what is going on when you have cancer and lung cancer in general. My blog is directly informative, and with many intelligent comments from people helping me with perspective when I ask for it, so I have an online community that gives support, a good example of how to use the Internet these days through the personal blog style. As a writer-psychologist I pretty much tell all, except the sexual life out of deference to my partner, but there is plenty else to tell, including giving reference.
In conclusion, some of us well educated just have to try and understand what is happening to us with a cancer diagnosis and want to make informed decisions. Others of us will pretty much go with the best doctors they can find, like at a university specialist clinic with its own hospital. For me I questioned even these doctors and now have gotten recommendations for different specialist doctors I shall call in the morning to get recommendations.
With lung cancer, stage three, I am talking about a good chance of dying from it, since it is a leading killer for older men apparently. So you read in my blog to see me and my comments people, and my doctors and alternate practitioners tackle the issues of either somehow controlling the lung cancer into a couple of good years where the symptoms are controlled and I am comfortable to live my regular life, or that I have the health team to be with me as I cancer deteriorate into a dying process, including ending up in a caring local hospice for the final weeks and days.
Since I love to write and be revealing of what I experience as life I can assume that going through this cancer experience has good interest and benefits for others, not all of them tragic by any means but informative of how to make decisions and live with the medications and treatments and also process your emotions and relationships that are directly affected. Some of my tennis friends have extended themselves more than when we played tennis together, which I don’t now. So I offer my blog as both my committed personal expression and a resource to others who have similar situations, including not cancer for themselves, but a relationship with a cancer person they need to understand. A daily blog gives you more info than a Larry King show so is a good backup to a Larry King show. That’s why I write about it here. As a professional writer and psychologist I want the word out for people who want to know in depth about what a lung cancer diagnosis is likely to cause on a daily level to deal with.
I’ve had this cancer for 2 years now. I’m thoroughly depressed – sex has been a very important aspect in my life, and I didn’t want it gone at 60! I am sorry in retrospect that I had radiation to rid myself of it, would rather be dead. I’m single – wife died, i’m bi, and have gained 50lbs. since diagnoses, in chronic pain from poly-arthritis – worsened from radiation – though the md’s say it should help! Now I suffer from hypo-gonadism. Seriously, I wake up each morning wishing I had died in the night. Sorry I sound depressed, but I think this quality of life s**ts.
My husband has hormone refractory prostate cancer and he watched the Larry King show and it made him mad.. He said they made it sound like prostate cancer was nothing .. It was definitely not the kind of information he was hoping to get from this show.
Jaye, unfortunately I agree with you. I was hoping to see some discussion of advanced PC, but it was the same old thing. Every patient on the show said everything was just hunky dory after treatment. Michael Milken, I suppose, was the “representative” for men with advanced PC, but his case is anything but usual. Billionaires have a lot more options! Even so, surviving 16 years after a diagnosis of Gleason 9 is pretty impressive.
I call people like your husband the “invisible men”. They are not featured in the media because people don’t like hearing about unpleasant things — like castration, or as we call it, “hormone therapy”..
Check out my colleague’s blog, advancedprostatecancer.net to find good information and sources of support..
I wish you and your husband well.
Leah
I’ve never posted to a blog, so this is a first. My husband has just been diagnosed with PC. His Gleason score is 6 and the urologist has recommended surgery, but is leaving the decision up to us. We will see the radiation oncologist and surgeon in the next few weeks and make our decision then. Husband is leaning towards the radioactive seeds because the recovery time is so much shorter. I would like to hear from others about this aspect of the treatment. We were given books to read and I keep picking them up and reading bits but can not bring myself to read from the beginning. I must admit the sexual side effects scare me the most.
Lee,
I’m really sorry that you are feeling so lousy. But there’s no need to apologize for feeling depressed. I won’t judge you and just tell you to “put on” a positive attitude as if it were a pair of pants.
It’s not hard to understand why you’re feeling bad. I’m sure the situation is compounded by the loss of your wife. Are you sure the rad worsened your arthritis? Has a doctor said this to you? I’m no doc, but I find it hard to see a connection. Maybe because my husband had such an easy time with salvage RT.
Yes, the loss of erectile function is obviously hard (no pun intended!) on every man (and their partner, often). I don’t know whether you’ve looked into treatments — some do work. As to your sexual orientation, I suggest you have a look at malecare.org, which sponsors this blog. A particular focus of theirs is gay and bisexual men with prostate cancer. I will cc your msg to Darryl, the head of that organization, to see if he has any other ideas for you.
You know people just assume they are sexually dead (i.e., on the “meet market”) if they’ve had invasive treatment for PC. But it ain’t necessarily so. But this disease can be much harder to tolerate when you don’t have a partner.
I would strongly recommend that you see a professional for your depression. You would be surprised by how many men with PC do so — and many get some relief. A shrink can’t fix your problems, but they can listen to you and prescribe drugs that actually alleviate pain. Also, do a search on this blog for “hotlines”. There are a number of them you can call if you are feeling particularly bad — don’t hesitate to do this. That’s why they are in business. While I’m at it, I’ll mention that the Prostate Cancer Research Institute (pcri.org) has a hotline you can call with PC-specific questions.
There’s hope even if you can’t see it. There always is.
Take care and keep in touch.
Leah
I have to agree with jayne about the Larry King show, i thought the whole issue of prostate cancer was trivialized. This show was a waisted opportunity, they should have gone down the line of what people with prostate cancer can do for themselves to help beat this terrible disease.
The show touched the viewers’ emotional cords with live and recorded testimonies from high profile men with a history of prostate cancer detected by the PSA testing. Former Secretary of State General Colin Powell, Los Angeles Dodger manager Joe Torre, radio talk show host Don Imus, actor Charlton Heston, actor Jerry Lewis, golfer Arnold Palmer, New York City Mayor Rudy Giuliani, Senator John Kerry, Senator Bob Dole, and General Norman Schwarzkoff all told of their bouts with prostate cancer and the apparent benefits they received from early detection and the treatments that followed.
Thanks Leah for the heads up on advancedprostatecancer.com, another great blog. I agree with your observations regarding the “invisible men”. It really isnt pretty to feature all that details into mainstream media but then again, our media feature more horrible stuff and they even try to dumb us down, such as that larry king ep.
I am on a much needed vacation so I will send you a longer reply when I get back next back. You are right not to hurry into anything. And more women are scared most about the sexual side effects than are willing to admit it.
Leah
thanks for leah’s recommendation,i just found some useful informaiton in advancedprostatecancer.net
My husband was diagnosed 6 years ago had surgery to remove PC that spread outside the prostate area five years ago. At the same time he also had a special procedure that repaired the nerves damaged by the surgery with a nerve from his lower leg. The nerve surgery worked well and he still has sexual function, however the subsequent radiation therapy has affected his overall health. The radiation side affects have largely disappeared now. Unfortunately, the surgery to remove the PC was not successful and the cancer has spread. He has been on hormone therapy for almost two years now and doing well. We are happy for each day.
And he told about Denosumab. It impoves conditions of patients sustained prostate cancer.
my father recently found out that he has stege 6 prostate cancer. i’m looking for someone to chat with about it. i need info about the treatment he could get and the sideeffects. please send me info
The first thing is not to panic. This is a very treatable illness. It would be helpful if you could provide Dad’s other stats, like his age, PSA, stage, amt of cores in biopsy, etc. The doctor has all this info.
The important thing is if you have early-stage PC is NOT to rush into treatment. You are not doing yourself any harm in exploring all the options — in fact, that’s the best way to go.
I don’t know of a live chat group — I’m thinking of starting one. Check if there is a man-to-man support group in your area. Check at ustoo.com.
I recommend a website called yananow.net. It is run by a man named Terry Herbert, who has written a great book, an intro on PC, which you can download from his website. The book is called, “A Strange Place”.
Please write if you have any other questions.
Leah
prostatecancerblog.net
Husband diagnosed this spring with pc–Gleason score 6 psa 7.5. Went to MD Anderson and had a second biopsy –Gleason 7 (3+4) and psa 2.4. There were 2 cores. Initially, they encouraged him to go on active surveillance. Now they are recommending treatment. We are looking at cryotherapy. Would love to hear from someone who may have knowledge. Also, we are curious about the declining PSA. His PC is confined to prostate gland.
As you know, I am not a doctor, but to me the sharp drop in PSA is unusual (normally it would trend upward), so I would suggest getting second and third opinions (even though MD Anderson is a first-rate institution). A good book to consult is “America’s Top Doctors For Cancer”; see castleconnolly.com. Also, it’s probably a good idea for your husband to have another PSA test to find out more. Regarding cryotherapy, my impression is that it’s not yet ready for prime time. I know of several patients who have had severe side effects from it.
The most important thing is don’t allow yourselt to be rushed into treatment.
Good luck,
Leah
I am currently undergoing Proton Therapy treatment at M.D. Anderson in Houston. Nobody has yet mentioned this type of radiation therapy. So far, I am half-way through with few side effects; all of them, so far, temporary and will stop when the treatment is over. I chose this therapy after consulting with a friend who had Proton Therapy 5 years ago and is cancer free and no side effects usually found with other radiation therapy. I would like to see Proton Therapy explored a little more in Prostate Cancer blogs. My blog is a day-to-day blog about treatment and personal life.
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