This was a good week for prostate cancer. First there was a front-page article in the Sunday New York Times which reported that the drug finasteride (Proscar) may, if taken regularly, lower one’s risk of developing prostate cancer by 30%. Then there was a study by Dr. Ornish of UC San Francisco, (excellent hospital), which showed that “lifestyle changes” trumped bad genes in men with early PC! “Genetic nihilism” is a thing of the past! So they say. But I would like to trumpet the news that hit closest to home. Dear husb had salvage radiotherapy just about a year ago for recurrent prostate cancer. So when I saw this, I was thrilled:
A research study performed at Johns Hopkins hospital whose results were reported in the Journal of the American Medical Association found that radiation therapy for prostate cancer that has recurred, also called “salvage radiotherapy”, has been shown to prolong life – if performed within 2 years — even in aggressive cases.
This story took center stage in the medical news and I urge you to read it in its entirety:
http://uk.reuters.com/article/healthNewsMolt/idUKN1738226020080617
http://www.washingtonpost.com/wp-dyn/content/article/2008/06/17/AR2008061701645.html
http://www.sciencedaily.com/releases/2008/06/080617160804.htm
The implications of the Hopkins study are huge, if only because the findings are counter to what was believed by many PC researchers. First, we now know that there is an effective treatment for recurrent PC. It was reported that 86% of men who received salvage radiotherapy (SRT) were alive after 10 years. Deaths were reduced by two-thirds. More exciting, salvage rad appeared to be working on aggressive tumors, i.e., high-grade (e.g. high Gleason score) and fast-growing (high PSA velocity) ones. The researchers are not sure why and how this works, but the important thing is that it does. From Reuters:
While past studies have found radiation therapy helps keep tumors from growing, the latest study is the first to show a survival benefit from radiation therapy in aggressive prostate cancer that has returned. . .
You may not think it a big deal if a treatment prolongs survival. Isn’t that what it’s supposed to do?
Not necessarily. Let me give you the inside story as the wife of a man who recently underwent SRT. Believe me, I leanrned something about the subject. I think that sharing some of it might help you better understand the issues underlying the Hopkins story and the importance of their findings. And I also cannot urge patients enough to check out — on their own — the possibility of adding radiation therapy to surgery if they have intermediate- or high-risk cancer. It’s much better than having a relapse.
My husband began salvage RT just about a year ago for a recurrence of PC. (Had RP 10 ’05, PSA of .12 Jan. ’07). He had about 40 individual treatments. The good news is that it was painless (potential side effects are often exaggerated by surgeons) and that at 6 months his PSA was undetectable.
Originally, when dear husb got the news about his recurrence, (as a dutiful wife) I did a whole lot of research on salvage radiation. Of course, I was most interested in treatment outcomes. Unfortunately, after researching outcomes for salvage rad extensively, I found the results confusing and demoralizing. That’s because there was not a lot of reliable information out there. Mostly guesswork. T’s doctor said his chances of a “cure” with salvage rad was about 70%. That was consistent with what I read in the medical papers. Let me just explain that his odds would have been 50% if not for the fact that he had the rad done so early. Tacked on another 20 points, it did.
HOWEVER, I noticed after reading some medical papers that, after touting the effectiveness of salvage radiation, there would be a disclaimer at the end of the article stating, “SRT has not been shown to prolong life in any patient”. So what does it do? Halt the progression of the disease? Possibly. But it’s easy for statisticians to “cook the books” to get whatever result they want. I think in the case of the SRT studies I read the projections were based on the 5-year life expectancy of a man with PC who had been given salvage rad. So, spouse, age 55, would almost certainly be around in half a decade. Satisfying, but I would have preferred a longer-term outlook.
That’s why I’m one of those contrarians who recommends doing PC research sparingly. One reason is that, unfortunately, not much is known about many areas of prostate cancer. And statistics can confuse rather than enlighten. I’ve heard it said that most doctors don’t even understand them.
But I did find out some important things about SRT (and adjuvant RT, which is RT given immediately after surgery before there has been any rise in PSA) that I felt were not known to the online PC community and so I tried to spread the word. Some of the papers I read said that adjuvant and salvage RT are effective and lifesaving treatments — but that they’re “UNDERUTILIZED”. It’s unfortunate that the newest and best treatments are often not put into practice by doctors. Sometimes you, the patient, have to take the lead.
One point that was made repeatedly is that radiation after surgery is more effective the sooner it is done. Therefore, adjuvant radiation (done before any recorded rise in PSA) is better than salvage radiation. What this means in practice is that if a man is at medium- or high risk for a recurrence, he should consider having RT immediately after surgery. With salvage RT, men with a post-RP positive PSA are traditionally advised to wait 6 months in order to observe 3 successive rises in PSA to confirm that there is indeed a problem before undergoing treatment. In our case, based on advice from some “elders” in the newsgroups, we decided to consult some radiation oncologists right away. I have no doubt that that was the right thing to do. And the rad oncs didn’t think we came a moment too soon. DH had the salvage rad done when his PSA was (only) .17.
One thing to understand about SRT is that it will only work if a recurrence of prostate cancer is localized. The doctors have to aim the radiation at a specific part of the body, in this case, the prostate bed (where the removed prostate had lain). The hope is that there is some residual cancer there that is giving rise to the PSA that is circulating in the body. The other possibility is that the cancer has moved beyond the prostate area to other parts of the body, or metastasized. In that case, the SRT would not be expected to work.
Initially it was thought that only about 16% of recurrent PC was local. That would not bode well for salvage radiation. But doctors were getting positive results with a (much) higher percentage of patients, so there were several possibilities to consider. One was that more PC recurrences than had been previously thought to be distant were indeed local. The other observation made by researchers was that even some aggressive, high velocity cancers seemed to be responding to salvage radiation (again, confirmed by the new studies). So the assumption could be made that an aggressive, fast-growing cancer was not necessarily a metastatic one. Or — more boldly — could the radiation of the prostate bed help in some way we don’t understand even with distant metastases? That’s what many doctors believe.
The new research study answers some important questions. The finding should encourage patients with aggressive cancer who might not have other avenues for treatment, and also let patients who’ve had RP know that if their primary treatment should fail there are good alternatives available.
I too had PSA surgery in October 1999. I was at 6.4 at time of surgery. For 4 years the PSA was at 0 and then in 2003 it had risen to .07. It slowly rose over the next 4 years until 2007 it was .7. At that time I too chose to have Radiation therapy (tomo therapy at City of Hope). My PSA is now at 0. I am grateful that I had the procedure with very minimal side effects.
I had robotic prostatectomy in May 2007. PSA began to rise within three months to 0.6 and then to 0.9 within six months. At that point, my urologist/surgeon ordered CT and bone scan–both negative. His conclusion: it’s in the prostate bed and you should have salvage radiation. So seven months after surgery I was going in for radiation. In early 2008, I had 37 RT doses (five days a week) that knocked the PSA down to 0.2 and then 0.24. It’s now at 0.31. I’ll have another PSA test in January. I was also encouraged by the Johns Hopkins study. Who knows?
I hope it works for you. My husband just got his second post-salvage-rad undetectable reading!
I had robotic prostatectomy in Jan 2006. My PSA was for 18 months 0.01 then in Dec 2007 0.03 and in May 2007 0.08. In early June to July 24 I had 35 IMRT treatments. In Sept 17 my first PCA was down to 0.03 my second PSA on Jan 7/09 was 0.06. I was hoping to be <0.01. Is this normal? I was told by my doctor that some normal cells may be left in also and they can produce PSA. Is this possible? Is it possible that my PCA will go down to 0.03 or 0.01?
Anestos,
I am not a doctor and it would be irresponsible for me to answer this question. I don’t know that much about how PSA reacts after salvage radiation vs. surgery. Keep your spirits up.
Leah
I HAD A DA VINCI ROBOTIC RP 1/05. FROM THERE MY PSA’S WENT FROM UNDECTABLE TO .60. I STARTED 40 IMRT TREATMENTS THREE WEEKS AGO. SO FAR SO GOOD. DOES ANY ONE HAVE ANY STATS ON THE COMPLETE IRRADICATION OF PC FROM IMRT RECIPIENTS? GOD IS GOOD!
I can’t give you exact stats because I don’t have enough informaiton, but the results are better *the earlier to do this* and you have started early. I have seen projections of 50-70% of a “cure”, but we really don’t know. I have just read the latest practice guidelines from nccn.org, which is a consortium of top cancer hospitals, and they recommend using adjuvant and salvage RT based on good results from several new studies.
Leah
Thank you Leah for your response. All info is helpful. Faith, hope, communication and sharing is what ita all about.I will keep all posted on my journey.
I just had Robotic RP last week. (6-15-09)Original Biopsy was 3+3 Gleason. I am 50 years old. The Doctor gave me the pathology report today that said the cancer had filled the whole volume of the prostate. There were many areas where the cancer was 1/10″ outside of the prostate. He recommended RT even if my first PSA test comes back at 0.00. Now I have to deal with 6 weeks of Radiation. Do I have to heal from the current surgery for 6 weeks or can he radiate me tomorrow? What are the side effects of the radiation, and will I be able to work? Thanks You.
Dear Phil,
I’m sorry you find yourself in this situation. The weeks after surgery can be very taxing, but things do get better. I have no medical training, but I believe the docs prefer to give the patient a little time to heal before starting salvage radiation. Perhaps a few weeks. I believe most men experience only mild side effects from RT if they are generally in good health. Maybe some fatigue, which researchers say can be eased with exercise. My husband insists he had *no* side effects from the radiation that even required him to take an OTC medication. A little rectal burning, but it was tolerable. Also, DH was working 2 jobs at the time and the radiation did not interfere with that. But of course every case is different.
The best thing in this situation is to talk to another guy who has been through this or to join a PC support group. I am giving you my husband’s phone number and feel free to call him to talk. (And the same for you, dear readers, if Dear Husband can be of help. Just e-mail me at Leah@malecare.com.)
Good luck.
Hello Leah, thank you for your response. Leah on 1 February, 2009 at 12:56. I was touring the Greek Islands for four month and had very limited internet access. I had my PSA checked June 26 and my PCA is up again to 0.09 (2nd time) and now I’m 0.01 above when I started salvage radiation. I know I’m still below the 0.2. Cleveland told me not to worry and my doctor here in Canada to do another test in Nov. Does anyone know of any studies that monitor PSA after adjuvant or salvage radiation? Was my treatment adjuvant or Salvage? Thank you. Anestos
Leah, I had RPS in 2004 – PSA’s .0 until a year ago. Current PSA .7. I am scheduled for SR next week and am looking forward to it but my family is really worried about side effects – especially the possibility of needing a colostomy because of SR. My health is good. I am 72 and urologist here (Durango Colorado) feels watchful waiting is better. I am confused and getting worried about side effects of SR. Do you have any words of wisdom?
Barney–
I can only tell you that my husband did not experience *any* side effects from salvage radiation. If you want, you can talk to him yourself about this. But hubby was 56 and generally in good health when he had the treatment. Bowel problems with radiation are very rare even though fearmongers insist otherwise. But I don’t know the general state of your health and how well you would tolerate the rad. Of course I am not a doctor, have no medical credentials, but I think if I were in your shoes I would treat the cancer actively. With salvage radiation, the sooner you do it the better.
I don’t know your doctor’s rationale, but there is a problem with *agism* with PC. But that’s another subject. Some men are old but still in good condition!
I don’t know where Durango is, but there is a *wonderful* oncologist, Dr. Michael Glode, at the University of Colorado medical center. He writes a blog about PC and I have quoted from it a number of times. Dr. Glode comes across not just as knowledgeable but compassionate as well.
Either way, get a second opinion,
All the best,
Leah
My husband had RPS in 2000. After surgery he was told there was no need for radiation as the cancer was “contained” in the prostate. His PSA remained less than .01 for 9 years, until two weeks ago. He was just told it is 11.4! At time of surgery, his PSA was 6 & Gleason was 9. He is scheduled for CT and bone scans in two weeks. I am encouraged by the possibility that SR and hormone therapy might improve his condition. His urologist did not mention SR during his recent visit, only hormone therapy.
Peggy, I wish you well. My guess is that your husband’s illness can be controlled for a long time.
You might just want to show your doctor (I’m assuming he/she is a medical oncologist), this article. More research has come out about this but I don’t have it at hand. The best way to go about treatment for PC is to see doctors in different specialties. So I suggest that if you have not done so, you should consult a radiation oncologist and get another opinion. This is *critical*. It’s always a good idea to get a second opinion and take a deep breath before you act.
I just want to tell you that their are other things that can cause a dramatic rise in PSA. I just read about such a case where the pt’s PSA was kind of high to begin with but it went from 41 to 6 in a week. This is NOT typical, but you should rule out everything that could cause a rise in PSA, such as an infection. Before you do anything I suggest you do some repeat PSA tests.
Best of luck,
Leah
Leah, do you know how long after the finish of salvage radiation one’s PSA should be tested? I have heard that initially right after radiation treatment ends a person’s PSA might rise and then slowly go down but I do not know any timelines for testing PSA – a month after, two months, etc. Do you have any idea of timing of initial PSA measurement after salvage radiation finishes?
Thanks
I think the usual is about 3 months because it takes time for the treatment to work. My husband had his follow-up at 5 months, but I thiink that was because of the doctor’s busy schedule.
Why don’t you just check with the rad oncologist?
All the best.
Leah,
Thank you for such an informative post! My father had a prostatectomy in 2003 and now, due to a rising PSA, his doctor has recommended salvage radiation therapy. He is 79 and we are very concerned about how he will be affected by the radiation. Reading your post has put my mind at ease. My question: Where did your husband have his radiation? Who was his radiation oncologist?
Thanks very much! I appreciate it.
And I am so happy to hear how well your husband has done. All my best for continued good health!
Sincerely,
Jackie
I am agonizing over whether to do adjuvant therapy soon or put it off and have SRT later on. My current PSA is<.05. I had my surgery mid-December. I'm a Tc3 with an 8 Gleason and extracapsular extension, pre surgery PSA 7.85 I am primarily worried about radiation side effects of incontinence and bowel issues. I'm 67 and have discussed this issue several times with my surgeon. I have not met with a radiation oncologist. Advice?
husband had surgery 4 years ago. psa has risen from 0.05 to .24 in 9 month priod.radiation was suggested asap. has had 8 treatments and received letter from surgeon who said wait till another blood test is done 2 to 3 months since the last one taken 5 days prior to radiation dropped .15
talk about confusion
I’m sorry you are suffering so much from your situation. In my experience, the suffering is worse when you’re in the process of making a decision and abates once you have reached one.
Of course I can only advise you patient-to-patient as I have no medical credentials. I think you’re going about this in the right way, asking the right questions. If I were in your shoes I would definitely see a radiation oncologist and probably a medical onco as well (altough I wouldn’t be thrilled at the prospect of having ADT, I’d keep an open mind). As always, do your very best to find the really top doctors in the field (A good source of info is “America’s top Doctors for Cancer” (castleconnolly.com). I don’t know how your overall health is in terms of handling additional treatments, but because you are high-risk I would probably throw everything I could at the cancer. Believe me you want to do everythingin the world to avoid getting the dreaded news that your PSA is rising. Let me say that the reports of bowel problems after radiation therapy are greatly exaggerated — the real rate is about 1% for serious problems. It’s also critical WHERE you have the treatment, or ANY treatment for that matter, performed. My husband had salvage RT at MSK, and he claims he had no symptoms whatever — didn’t know whether they even turned the machine on. Go to a top center of excellence if you are able to travel.
I just did a quick search of the lit on adjuvant and salvage rad for t3 patients and the news seems to be good. BUT the men in this particular study were given adjuvant rad by 18 weeks after surgery, so it does seem that earlier is better.
You are a “young 67” so go for it and best of luck.
Leah
Dear Patty,
I’m a little confused about your question, but I think the suggestion to wait is a good one. Usually the doctors do 2 successive tests and if the PSA is on an upward trend they commence radiation. It’s true that salvage rad is better done sooner than later, but because your husband’s PSA has declined, I’d wait. In a small percentage of cases, PSA rises to low levels in men who’ve had surgery and just hovers there.
All the best.
Leah,
I had RP in October 2004. For 24 months my PSA was 0.1 and then
went up to 0.2 where it stayed for a long time.
In January and April of this year it was 0.5 and in July 0.7.
I’m scheduled for Salvage Radiation Therapy.
My original diagnosis was Gleason 7 (3+4), PSA 4.3. After surgery there
were no positive margins.
I’m very perplexed and worried because I hear many stories about side
effects of RT. Both my urologist and radiation oncologist say that
I should go for sooner rather than later. I’m being treated at Oakland Kaiser in California. Grateful for any suggestions.
Peter
Leah,
Thank you for a wonderful post. The dearest man in the world to me had surgery in June of this year. One positive margin, Gleason 7 (3+4) all other pathology good. His post surgical PSA in September was 0.46 and 0.28 when repeated. He starts radiation in a week. He is 58 and in good health. I am trying to be strong and face down this dreaded disease every day. I find your postings informative and encouraging. God bless you and your husband.
Age 56. June 2009 psa 4.0 had a biopsy two cores out of 12 positive Gleason 6 did watchful waiting for 3 years, psa up 7.3 rebiop 2 cores out of 10 Gleason 8. Stage T3a Seminl vesicles envolved. RP January 2013 Post opp psa after 3 months. .60 . Pre adjavent Radation ADT. Casodex and zoladex ,side affects hot flashes, fatigue,memory loss. importance to name a few. July 4,2013. Start radation, 33 treatments. Finished August 22. Side affects, four weeks in to my treatments, rectal bleeding, proctitis, diarrhea. Hope this works. Having way to much fun. My PSA is now. 0.01. Stopped Casodex will continue Zoladex for two years. Can hardly wait for what comes next. Every day above the grass is a good day.