I was diagnosed with Gleason 3+4 PCa in 2007. The two options that were recommended to me were robotic assisted radical prostatectomy or radiation. The surgeon that I consulted did not leave me with a feeling of confidence, and I also consulted with a radiation oncologist who recommended IMRT. I went back to my urologist for a final consult and I took the less intrusive option, IMRT.
Fast forward to 2013 and the cancer is back at a 4+5. I was treated by a brilliant surgeon at MD Anderson, who performed a salvage prostatectomy. It first seemed curative, but over the next couple of years, that turned out not to be the case. I've been on Lupron off and on for 4 cycles, and it's now castration resistant. The medical oncologist and I will decide on the next course of action next week. It will either be to see what a standard therapy does, or to enter a trial tailored to PCa.
In retrospect, if I could have predicted the future, I would clearly have gone for the surgery. Or I had the option to go to MDA for proton therapy, but the radiologist said there was no clinical benefit of protons over IMRT. Hindsight is 20/20 as they say. Knowing all of this, I'd be hard pressed to recommend radiation as a first-line treatment. Just IMHO; I'm not a doctor.
Best, John
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jal1954
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There are two things that a newly-diagnosed man needs to be aware of:
a) faced with having to make a rapid treatment decision, it's impossible to get up to speed on all of the nuances. Therefore one must rely on the specialist one sees.
b) but, all of the advice one receives is tainted. Oncologists & urologists are seemingly at war. One study reported that the treatment one receives for PCa depends very much on whether you first see an oncologist or urologist. That should not be the case.
When my urologist laid out the options, it was clear that he was expecting me to make a choice. It was also clear, given my age, health, Gleason, etc, that surgery was my best bet.
Some time later, I asked why he hadn't simply recommended surgery. He said that it was all about empowering the patient. I suspect that it had more to do with treatment failure. A patient is inclined to believe that he made the right decision, even if the outcome is poor. Something to do with Cognitive Dissonance. Less likely to blame the doctor.
I asked him what he would have done if I had chosen differently. "Then I would have argued with you!"
Anyway, I found an online calculator which gave my 10 year survival probability as only ~2% less than if I had no cancer. With radiation, the probability was 4-5% less.
Looking back, I see that there were problems with the calculator. It didn't account for men who chose radiation because they had other health concerns that made surgery risky. Even so, every comparison study that has come out in the past 12 years, shows better survival with surgery. & yet oncologists often say that radiation is superior.
I lived close to Dr. Myers' office at the time. The father of a friend who was a patient, pleaded with me to visit Dr. Myers. I called & spoke with Myers, who told me to come by the next day. He neglected to explain that he didn't accept insurance.
So I never had a consultation, but I did chat with him. I thought he looked very ill - nothing like the man in the videos - but he was coming up to 5 years since treatment, & seemed to feel that it was a very significant milestone.
Anyway, on my way out, the two ladies at the front desk wished me well & told me to make sure that I went to an oncologist for a 2nd opinion. "Urologists are too eager to cut!"
Those women knew nothing about my situation, but were assuming that surgery was probably not the best treatment. I wondered what percentage of Dr. Myers' patients were advised to have surgery.
When I read about "Invasion of the Prostate Snatchers" co-authored by Dr. Mark Scholz, with its snide attacks on urologists, I became even more dismayed by the lack of respect urologists get.
I was Stage 4 D1 and surgery was not recommended as the cancer already migrated to my pelvic lymph nodes. Was able to talk the surgeon to operate last April. Started hormonal treatment last June and finished 38 rounds of salvage radiation in October. So far PSA <0.1.
I had a radical prostatectomy on diagnosis in 1999 staged T2aN0M0 Gleason 8 (4+4). Calculator said 48% chance of survival 5 years. The cancer recurred six years later,and In 2006 I had external beam salvage radiation with hormone therapy at MD Anderson, then 4 cycles of Intermittent hormone therapy (9 months on, 9 months off). I started continuous hormone therapy in 2012. Looks like we made different decisions with similar results. Whose to say which was the right decision. Full treatment history in my profile. Good luck.
Me too. Dxed in 2001 with 3 + 3 prostate cancer. Only open radical prostatectomy or IMRT were choices for "cure" possibilities. Chose IMRT as the least invasive procedure. I believed that either surgery or radiation, had similar results of success or failure, no matter what the calculators say. Reoccurrence in 2011. Seed implants then. Now 5 yrs. out and PSA rising again. Went to Mayo and found cancer in my seminals. Did the robotic in Minneapolis, which was not available in 2001, and removed 10 lymph nodes. Just out of surgery 2+ weeks. Robotic was much better choice vs open. I hope my cancer is "localized" and that surgical removal will lead to some yrs. of QoLife. I am 71 now and trying to make a run for it hoping something else will kill me rather than PC. No guarantees in this journey. One must look as his situation and play it out, just like in a poker game. Play the hand your dealt. Know when to hold, when to fold, and when to walk away. It all comes down to the poker game of life. It is a gamble my man no matter which hand U R dealt. Best wishes. I now have to wait to take my first PSA test post SV's being removed along with 10 lymph nodes. I hope my PSA comes way down from the 12.3 it was prior to surgery. And then flat lines over time and distance from the last surgical treatments. And on and on it goes.... Docrok
Tx for the reply poker player. Yes life is a gamble, full of risks and rewards. One must play the hand we are dealt re: of the odds of winning or losing. Glad to hear you are a player in the game of life and living. Hope the PC ante is worth the wins U might attain. Best regards poker face; Doc rok
Just a question. After being diagnosed by a urologist I began to notice that all the urologists I saw began to sound alike. Since I have cancer (lesions everywhere) it made more sense to go to an oncologist. I now feel much more comfortable at Vandy with an oncologist and a radiologist oncologist.
Now having 5 different primary cancers including metastatic current prostate cancer I have learned a little about how to live life with cancer. The most important lesson I have taken away from this experience can be summed up in three words, NEVER LOOK BACK.
What we have done in the past is in the past. What is in the past can no be redone, with cancer there are no mulligans. Dropping another ball doesn't work. The only thing that is important is today and maybe just a little of tomorrow morning, that is all. We only know that we have today.
Looking back and second guessing ourselves only leads to depression, anxiety and other negative feelings. It doesn't make us better, allow us to live longer and it doesn't make us happier. So, why do it?
Yes, we should acknowledge the side effects from yesterday's decisions, but only to the extent of finding ways to deal with them. These side effects and the results of prior treatments are not in the past, they are our today, so we should concentrate on them (or today).
Regret, our major problem besides death, should never come into our lives. We avoid regret by accepting our today and NEVER looking back. Looking back is unhelpful.
I find it helpful to not look back by being very sure that I have done everything I can humanly do to learn as much as I can about my options. This way I know, despite the end results, that I have made what is my best possible decision at that time. Yes, knowledge does change and if I knew, or the knowledge was different today, I might make a different decision, but today's knowledge is what is available.
Bottom Line - Educate yourself, learn as much as you can, make a decision when you are ready, deal with today's results and NEVER look back and second guess yourself.
Well stated Jon. 5 different primary cancers; wow dude. Do not look back is a good mantra. The one exception for me is if I look back, what can I learn from that experience so that I do not make the same "mistake" again. Those who fail to learn from history are doomed to repeat it. Philosopher Santanya (sp), I believe. As Yogi Berra so adroitly stated; "the problem was that we kept making the same mistakes." Yogi Berra truisms! Another favorite from Yogi is "When U come to a crossroads, take it." docrok
I understand what you are saying, but I can not see how looking back on cancer treatment decisions and being sorry I made a choice over another possibility really can have the same learning experience as looking back on world history (etc.).
For me, when I come to a crossroad, like Yogi said, I do take it. For me each crossroad is today's crossroad, not yesterdays because yesterday's crossroad is far back and I can not even see it anymore.
For me, what I need to concentrate on is the crossroad that I am at now, that is the important one. Unlike Yogi I will not take it until I have studied it and learned about it so I know that I made the best possible decision I could have made for myself, no matter the result.
Cancer crossroads are not like other crossroads where we can repeat the mistake again and again. Even if I am wrong about this, which is entirely possible, so far I have been able to live my life without regret. I do believe that regret is a major killer itself. I already have cancer, a killer, why do I want to have another?
Of course, this is a very personal thing that might not work for others, for me, it is king.
Yes Joel; Not feeling sorry necessarily, but wising up to how I can improve and learn from my previous choices is a worthwhile lesson/endeavor for me. I concur that crossroads occur daily with decisions made at any moment in time. Doing one's homework and assessing which path to take is always apropos. Not really wanting regretful feelings yet open for adjustments as necessary. Tx for your astute reply. Docrok
I think Joel's take on this is the best one. Decisions made in the past with cancer are now done and we have to do our best to meet the threats coming from ahead.
I'd like to add one little note to this.
When a treatment fails we tend to look back and beat ourselves up for picking the wrong alternative. But there's no guarantee that a different alternative would have worked better. I know a very bright guy with a good understanding of science who read everything he could, studied the treatments, studied the doctors, and finally chose the best surgeon he could find for a prostatectomy. The operation went well but the cancer wasn't gone. So he researched again and opted for salvage radiation with the best radiation oncologist he could find and had the treatment done while the odds of success were still at their highest. Again, the treatment went well but the cancer wasn't (and isn't) gone. Sometimes the cancer has spread beyond treatment. Sometimes it survives when it appears that it shouldn't. I don't see how this fellow made any mistakes.
So if things went wrong for you, don't blame yourself and don't feel guilty. At a time of tremendous stress, complete (for most of us) ignorance of cancer biology or medical practice, conflicting advice from experts, limited choices, and fear for the future, we're asked, "What do you want to do?" It's just amazing that more of us didn't say, "I don't know and don't want to know doc, just knock me out and do whatever you think you should do." And even that worked for some guys.
"Buyer beware" is important to prostrate treatment options.
My urologist recommended cryosurgery (he performed hundreds with good results), but medical and radiation oncologist recommended radiation for 4+4 Gleason and 3 years ADT. I went with my urologist and have not regretted my decision, only because i got several opinions, testing, even a second read of lab results and minimal side affects. Now 8 years of active surveillance, I will start ADT in 2017 due to doubling time of PSA.
Best of the the Holiday Season to my brothers of the Bonny Blue ribbon.
I chose the best option scientifically.... I flipped a coin....
j-o-h-n Friday, 12/02/2016 4:53 PM EST
The jury is still out on the treatment option I chose. I had TURP surgery 10 years ago and was told by two urologists that I was not a good candidate for surgical removal. They both recommended IMRT radiation -- 45 treatments for Gleason 8. I had maybe a silly objection to radiation. Each treatment would require me to scarf a scary amount of water so as to lift the bladder away from the prostate. After dealing with BPH too long I have a very limited bladder capacity -- I practiced and confirmed that. I received an eligard shot in preparation for radiation. My research turned up the HIFU option, now available in the US. Even though it was quite expensive and out of pocket for me I had that treatment about six weeks ago. I'm an engineer and I am very cognizant of the value of feedback. The HIFU surgeon can see where he is in the prostate as he applies the narrowly focused high intensity ultrasound. It seems like a precision instrument in contrast to radiation which seems like a blunt instrument even with the calypso markers. So far so good as far as side effects. Time will tell how effective the treatment was. Oh, the other thing about radiation: why so long on chemical castration if it is so effective? The radiation oncologist suggested 18 months. The 2nd opinion urologist said 3 years. As Joel aptly put it, it is all water under the bridge at this point. I am hoping for the best ... for me ... and for all of you fellow survivors.
Funny you should mention the amount of time you receive Hormone therapy after IMRT. I had been told 3 months or 6 months by the urologist. Then after the MRI showed the bulge on the back of my prostate this was changed to 3 years post IMRT. My current oncologist now says that the injection before my RT will be my last. So my next injection will be the last one as having my planning scan next week. I will have had 3 x 3 month injections, and should start IMRT in Jan. The oncologist says that after having this amount of hormone treatment I will be covered for at least a year and his aim is to cure me with the radiotherapy not make me ill with the hormone treatment - though I am not suffering too much with any side effects of the hormone treatment - yet. I presume that without the hormone injections he will know sooner whether or not the IMRT has cured me. All very confusing.
Dr. Louis Pisters. I've read the surgical report, and he faced quite a challenging situation. I'm grateful to have had him available to do this complicated surgery.
We met with Dr. Pisters last week and were totally unimpressed. He was not very articulate, nor was he thorough/detailed with information or "why" explanations. Either that, or he talks to all patients as if they just barely managed to graduate from public high school.
He immediately recommended "a protocol" (code word for clinical study/trial) followed by surgery, shortly thereafter saying "I hate to be negative sounding, but I think you really need this surgery. Like in the absence of surgery, I think you're likely to die of this cancer. So, radiation is the other option, with 3 years of hormonal treatment. I personally wouldn't recommend that approach but if you want to talk to a radiation oncologist, I'd be happy to refer you to one." Then he goes right back to talking about surgery again.
We totally felt like he was pushing surgery on us so we could be signed up for this immuno-drug study. And guess what radiology oncologist we've been set up to meet with? The most inexperienced one - this kid who is in or has just finished his clinical residency at MD Anderson.
My story: at age 52, my husband is Stage T3b with positive margin,Gleason 9.
He wants to do radiation with ADT, not RP surgery - hoping for less chance of side-effects like bladder incontinence and ED, and due to his "positive margin" tumor, he feels he'd likely have to have radiation following a RP anyway.
This makes me nervous ... I was leaning toward surgery due to Gleason 9.
He started Lupron today (mid-October).
We are looking at IGRT (image guided IMRT) unless MD Anderson can convince us that IMPT (intensity modulated proton therapy) is worth the drive from our home. From what I've read, proton therapy may give him a 26-39% less risk of secondary cancer (from radiation) down the road. We hope to find out tomorrow whether he is even eligible for proton therapy at a Stage T3b and Gleason 9.
In any case, we will be continuing with natural substances (as read about on cancer.gov) up to, during, and after Western treatment...hoping to promote cancer cell death (apoptosis) of any escapees and hoping to prevent recurrence.
Very sorry to read about how your situation has progressed. Your message to men is an incredibly important one. The primary reason to elect to have the prostatectomy rather than radiation (when the tumor is confined to the prostate) is that the radiation makes follow-up salvage surgery of the prostate bed very difficult, due to the damage to surrounding tissues caused by the treatment at the irradiated site. This is even with the most skilled surgeon.
It may be time to step back and assess what other options you may have that are outside the traditional treatment protocols that western docs are comfortable with. I suggest googling TED Talks on Turkey Tail Mushrooms - tied to an NIH study with some amazing results. "Host Defense" is a reputable company that grows and distributes the mushroom capsules. Research use of supplements such as selenium, D3, zinc and others. They may help bolster your immune system, fight the cancer and lessen side effects of treatment. These can be added to whatever treatment you may be undergoing. Of course check with your physicians. My primary care and oncologist were fine with me supplementing my follow-up chemo.
Find some new weapons and keep fighting the "Dragon"! Good luck.
Unfortunately, as far as I understand, it is difficult to put together a "definitive" comparison of different treatment options.....such a study requires randomization of many men with very similar profiles .Mostly what we have available is retrospective studies of a single treatment Prostatecancerfree.org purports to graph recurrence-free results for a number of studies that qualify based on certain criteria. If those are actually valid, well designed studies, then it would be difficult to conclude that RP is superior....but perhaps there are better studies that show RP to be the superior approach for men who qualify for both RP and other alternative treatments? All these treatments " work" for some men, and "fail" for some men.....some men have OK , manageable side effects, and some men are unlucky and life-altering side effects. I suspect outcomes are more luck-based than the result of superior/inferior patient decision-making.....just MHO.
Forget about second-guessing.....yes, but easier said than done when things go badly?
Anyone have any randomized studies that are of recent vintage and at least 5 years out from initial treatments?
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