Among others, the former Chairman of Us TOO, Jim Keifert, has been talking to USA Today about his personal 23-year battle with advanced prostate cancer. Anyone who believes that a diagnosis of advanced prostate cancer is necessarily a short-term death sentence (which still seems to include a number of urologists) really ought to be asked to read this article. Jim is a personal case study in the evolution of efficacy of treatment for advanced and metastatic disease over the past 20 years.
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It depends on the individual case. My good friend was diagnosed with advanced prostate cancer a couple of years ago. They removed his prostate and he had hormone therapy then chemotherapy to try to prevent the spread. They told him his prognosis was pretty good. The cancer moved into his bones anyway, and he was gone within a year. He was in his 50s. I was diagnosed a little earlier than he with prostate cancer. Following a PSA score that had doubled over 2 years, but wasn’t yet very high, they pin-cushioned my prostate and found several tumors in the gland.
After “shopping around” for a few months for the treatment of choice, and talking to patients who had surgery, or radiation, or seeds, I opted for the surgery after taking some time in locating an experienced surgeon. They found it to be confined to the gland. It seemed to me to be the treatment with fewest potential complications in the long run, if you seek out a surgeon who knows the operation well. I was in my late 50s and expect to live a while. So far, it seems to have been a good choice. I think there is risk any way you go, and each case is different. There is a lot of press lately that prostate cancer treatments such as surgery are most often unnecessary and “watchful waiting” is the way to go. I think that is not necessarily good advice. It’s still gambling.
Let me be extremely clear …
First, no one is suggesting that everyone initially diagnosed with advanced prostate cancer is going to live for 20+ years. We already know that there are at least 24 genetic subtypes of adenocarcinoma of the prostate … and then there are the (much rarer) aggressive physiological subtypes like sarcoma of the prostate. On the other hand, in 1989, no specialized prostate cancer physician (and I know or knew many of them) would have told Jim Keifert that he had a reasonable hope of living for even 10 years, let alone 23.
Second, no competent clinician is suggesting that “watchful waiting” is an appropriate response to even low-risk prostate cancer in a man with a potential life expectancy of ~ 10 or more years. Unfortunately the media fail to distinguish with care between “watchful waiting” and clinically structured active monitoring (“active surveillance”). There is a major difference between these two approaches.
Third, individual case histories are interesting and can be educational, but … just because a particular type of therapy works in a specific individual does not mean that it is appropriate for another specific individual, for a whole host of reasons that may be clinical, anatomical, emotional, or maybe even religious.
Good for Jim!! We all have to be swinging and hoping.
And Happy Livestrong Day …
We already know that there are at least 24 genetic subtypes of adenocarcinoma of the prostate? How is one tested to see exactly what subtype the cancers are? The only symptom my husband has is his PSA score. The tests have revealed cancer in the gland. At this stage it seems to have remained the same since his first rectal examination over 2 years ago. He is 75.
Dear Nancy:
What we know scientifically and what we can actually test for clinically are two very different things. If your husband has a slightly elevated PSA level and has had a positive biopsy at age 75, this may be a very low-risk form of prostate cancer that can just be monitored with care.
If you join our social network, we can discuss his case in detail there. We are going to need more information from you to do that, however.
Good for Jim and you guys for promoting his great story!! I have Stage IV prostate cancer. I had the gland removed in 2011 and have been on standard hormonal therapy since then. The likelihood is high that sometime in the not to distant future the prostate cancer will navigate around the therapy. At that point I will have to fail other therapies before I will be eligible for any of these new potentially life-extending options. We need to find the money and commitment to enable newly diagnosed patients to throw the kitchen sink at this killer before they continue to slide so far down the slope that they wont be of benefit.
JD
Dear John:
(1) It would really help if we had any way to tell who needs to have the kitchen sink thrown at them up front … Unfortunately (as yet) we mainly don’t.
(2) If you became castrate-resistant (i.e., stopped responding to hormone therapy) tomorrow, many insurance companies would consider you a suitable candidate for treatment with abiraterone acetate and a few might even consider you suitable for enzalutamide already. It might take a little work on the part of your doctor and you to get one of these drugs if you weren’t actually metastatic as well as castrate-resistant, but I do know that is happening already.
Thanks, but I really want to know how it is determined IF it is a low risk cancer, and how to find out exactly what kind of cancer it is. Also I would like to know if diet changes can make a difference to the cancer.
Nancy:
(1) The definition of low risk is easy … It is prostate cancer with a clinical stage of T2a or lower, a PSA less than 10 ng/ml, and a Gleason score of below 7.
(2) At present the only way to be able to define precise subsets of prostate cancer is by very detailed genetic and pathological analysis of tumor samples. Such tests are not available commercially yet, and are only carried out at a relatively small number of very sophisticated cancer research centers like the University of Michigan as part on ongoing research studies. And in many cases, being able to know the difference between the cancer types tells us little to nothing about what “the best” way to treat the patient is (by comparison with what we already know from clinical evidence and experience).
(3) Yes, dietary changes can (but are not guaranteed to) affect progression of low- and intermediate-risk prostate cancers. Cutting back on fat in the diet; moving to a more “Mediterranean-type” diet (less red meat; more fish and veggies); cutting back on total caloric intake; and losing any excess weight do appear to affect progression of low-risk prostate cancer in some men. Regular exercise along with the dietary changes is also good (and in 75-year-old men is is good for the heart too).
Wish there had been a more precise description of his diagnosis than:
Jim Kiefert’s cancer had already spread by the time it was discovered shortly before his 51st birthday. After surgery and 35 rounds of radiation, he was told he had one to three years to live.
The 3-5 years to live was a popular number back in Jim’s diagnosis day as it was in my day 16 years ago. One of the many doctors I consulted said that the disease had spread. Others thought it hadn’t. Who knew then and who knows now for the majority of cases?
I am not trying to taken anything from Jim — 23 years is a good survival — but, just wish I knew a bit more about the detail.
I am pretty sure that, post-surgery, Jim was found to have extracapsular extension, positive seminal vesicles, and (possibly) positive lymph nodes, but that he was not overtly metastatic at diagnosis. I’m sure he’d be happy to tell you if you ask. Tom Kirk would be able to give you his e-mail address. (I used to have it but I can’t find it!)