surgery or radiation?
Comments
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MRIMounty said:MRI
Hopeful,
Your posts convinced me I needed to look more carefully at this issue and so I did; as a consequence I canceled the MRI rescheduled for next Monday, which would have been on a 1.5-tesla machine, until I've had my next consult. It's absolutely clear that 3.0-tesla MRI provides superior resolution and can impact outcome for patients with low or intermediate risk disease, although my reading of the literature is that the jury is still out on whether multi-parametric MRI is even better. What's not clear to me yet is how important high-resolution MRI is for a high-risk patient like me who almost certainly has extraprostatic disease with a likelihood of micrometastases as well. How do you think the information it would provide would impact a treatment decision under these circumstances?
Your right about the Multi-parametric MRI....it can be used to find suspicious lesions and then have a targeted biopsy, but in your case this is not necessary, since the aggressive cancer has already been found. Also since this is relatively new not all personnel are skilled in administering and interpreting the results...( best to use a a high volume center)
It's good that you are looking carefully into this, as you need to do for everything.
Your mentioned in a previous post that high grade disease was found in your prostate....you did not mention the amount of involvement, the percent of each of the cores that were positive. The greater the involvement the more likely that the cancer is outside the prostate.
The MRI with a Tesla 1.5 is pretty good, but does not give as fine a resolution as the Tesla 3.0. Is it possible that the 1.5 may not detect extracapsular extension that the 3.0 will do.....( ( Yes it is highly likely that your cancer is outside the capsule. The MRI with a 3.0 will more likely give confirmation, and my layman's opinion will show where and how much cancer there is to help in targeting treatment( in some cases).
There are super duper PET SCANS that are avalaible now with NEW materials to determine where and how much cancer is in the lymph nodes, if any. There is one in Arizona,
"
A Superior Technique to Image Recurrence
of Prostate CancerDr. Fabio Almeida will present the results of research with PET/CT scans using a new agent. Such scans typically used tumor affinity for glucose. Instead, Dr. Almeida uses C-11-Acetate that preferentially seeks a substance called FAS which is over-expressed in many tumors, including prostate. This new technique shows great promise for earlier detection of recurring prostate cancer.
Management and treatment of recurring tumors depend strongly on whether the recurring tumor cells are in the prostatic bed or outside the prostate area. Rising PSA is an indicator only of general tumor recurrence. However, the PET/CT scan using C-11-A can accurately discriminate between distant metastases and local recurrence, thus permitting an optimum treatment choice.
Dr. Almeida is the Medical Director, Arizona Molecular Imaging Center in Phoenix, AZ. "There is also one at the Mayo Clinic that uses 11C]choline with similar dectective ability.
If you decide to get one of these PET Scans, go to the center that is closest to where you live since the ability to detect is the same.
PS These PET SCAN may not be medically covered. You will have to check.
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Samsungtech1 said:
Treatments
Had Sam conditions as you. Urologist said surgery, radiation,and whatever. Had surgery, broad spectrum radiation for bladder, biopsy for nodules in lungs, radiation for nodules in lungs, radiosurgery, and then HT treatment with Digarleix. Currently PSA at 0.000. Been on HT for a year now. Not sure wheit cancer will figure outs a way around it, hopefully awhile.
Everyone is different. It worked for me, but that is just me, and we knew it had spread. If it has not spread to lymph nodes you have a good chance.
Mike
Thanks for your input Mike. It sounds like you've had a tough row to hoe but the outcome is pretty good at the moment. I hope it stays that way. In any case, knowing that you're doing OK at this point is encouraging.
Best wishes
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hopeful and optimistic said:
MRI
Your right about the Multi-parametric MRI....it can be used to find suspicious lesions and then have a targeted biopsy, but in your case this is not necessary, since the aggressive cancer has already been found. Also since this is relatively new not all personnel are skilled in administering and interpreting the results...( best to use a a high volume center)
It's good that you are looking carefully into this, as you need to do for everything.
Your mentioned in a previous post that high grade disease was found in your prostate....you did not mention the amount of involvement, the percent of each of the cores that were positive. The greater the involvement the more likely that the cancer is outside the prostate.
The MRI with a Tesla 1.5 is pretty good, but does not give as fine a resolution as the Tesla 3.0. Is it possible that the 1.5 may not detect extracapsular extension that the 3.0 will do.....( ( Yes it is highly likely that your cancer is outside the capsule. The MRI with a 3.0 will more likely give confirmation, and my layman's opinion will show where and how much cancer there is to help in targeting treatment( in some cases).
There are super duper PET SCANS that are avalaible now with NEW materials to determine where and how much cancer is in the lymph nodes, if any. There is one in Arizona,
"
A Superior Technique to Image Recurrence
of Prostate CancerDr. Fabio Almeida will present the results of research with PET/CT scans using a new agent. Such scans typically used tumor affinity for glucose. Instead, Dr. Almeida uses C-11-Acetate that preferentially seeks a substance called FAS which is over-expressed in many tumors, including prostate. This new technique shows great promise for earlier detection of recurring prostate cancer.
Management and treatment of recurring tumors depend strongly on whether the recurring tumor cells are in the prostatic bed or outside the prostate area. Rising PSA is an indicator only of general tumor recurrence. However, the PET/CT scan using C-11-A can accurately discriminate between distant metastases and local recurrence, thus permitting an optimum treatment choice.
Dr. Almeida is the Medical Director, Arizona Molecular Imaging Center in Phoenix, AZ. "There is also one at the Mayo Clinic that uses 11C]choline with similar dectective ability.
If you decide to get one of these PET Scans, go to the center that is closest to where you live since the ability to detect is the same.
PS These PET SCAN may not be medically covered. You will have to check.
Hello Hopeful,
Turns out the magnet of the machine I was signed up for is a 3.0-tesla, not 1.5. Of course I learned this after I had the appointment on Monday canceled. Not a problem though - I'll have another consult on Monday, which will undoubtedly provide more clarification, and eventually I'll have the MRI. At an earlier consult a urologist suggested a PET scan but the next doc I met with was not enthusiastic for reasons that I don't remember. I'll be seeing this doc again on Monday and I'll keep track of his answer this time.
I was diagnosed two weeks ago with an initial PSA of 34 and a biopsy with 14 of 14 positive cores, all between 50 and 100% malignant. Earlier I posted that a few of the cores were 3 +3 but this must have been wishful thinking - they're all 4 + 4 or 4 + 5 with a grand total score of Gleason 9 (4 + 5). The cores were examined a second time by pathologists at an NCI Comprehensive Cancer Center and they concurred with the earlier read.
Many of the posts to this forum have been enormously helpful since I received his diagnosis but yours and a few others have been exceptionally helpful, in this thread and others. I especially like the positive attitude you convey, which I share.
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Thank you for the complimentMounty said:Hello Hopeful,
Turns out the magnet of the machine I was signed up for is a 3.0-tesla, not 1.5. Of course I learned this after I had the appointment on Monday canceled. Not a problem though - I'll have another consult on Monday, which will undoubtedly provide more clarification, and eventually I'll have the MRI. At an earlier consult a urologist suggested a PET scan but the next doc I met with was not enthusiastic for reasons that I don't remember. I'll be seeing this doc again on Monday and I'll keep track of his answer this time.
I was diagnosed two weeks ago with an initial PSA of 34 and a biopsy with 14 of 14 positive cores, all between 50 and 100% malignant. Earlier I posted that a few of the cores were 3 +3 but this must have been wishful thinking - they're all 4 + 4 or 4 + 5 with a grand total score of Gleason 9 (4 + 5). The cores were examined a second time by pathologists at an NCI Comprehensive Cancer Center and they concurred with the earlier read.
Many of the posts to this forum have been enormously helpful since I received his diagnosis but yours and a few others have been exceptionally helpful, in this thread and others. I especially like the positive attitude you convey, which I share.
Basically, I have found that it is important to avoid stress, live in the present, not the past or future...basically enjoy the moment. I look for positive things to do, and do them.I work at having an upbeat attitude, at being positive...I look for the bagel, not the hole.
When we are diagnosed we all go through shock and all the negative emotions that go with it for the first 2 to 3 months. this will significant lessen. I for one find that learning about PCa and helping others with PCa help me a lot. In many ways my diagnosis has been a positive experience.
Tape recorder....I suggest that you bring a tape recorder to your doc meetings and ask if you can record the conversation...also bring your wife or a trusted friend or advocate.
Even though your cancer is aggressive, it is manageable, and you can have many years of life ahead of you.....there are many examples of men who are doing just this.
I had mentioned to you to have a Medical Oncologist lead your medical team. I also had mentioned that there are not many of these Medical Oncologists who specialize in Prostate Cancer. I now remember where I saw a list of MO's that specialize only in Prostate Cancer....there is a book, "Invasion of the Prostate Snatchers: An Essential Guide to Managing Prostate Cancer for Patients and their Families [Ralph Blum, Mark M.D. Scholz]"
Although this book is not oriented toward more aggressive prostate cancer and is oriented toward active surveillance for low aggressive disease, I beleive that there is a list of Medical Oncologists who specialize in Prostate Cancer at the back of the book.( I don't have this book in front of me since I borrowed it to read, however another member of our club who posts here may be able to validate this source.
P.S. don't forget to take some time off from this, and spend some quality time with your family. You will do fine.
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tp23 said:
Family Matters
Mounty -
Your memory's not so bad after all - I just turned 50. 3 children - daughter & 2 sons, 25-21-16. The news hit both my wife and I pretty hard - a lot of sleepness nights at first. We sat the kids down and briefed them - less the nastiest of details. With boys it's tough to tell what's going on - we generally don't open up about much unless provoked. According to my wife, the youngest went online to research what we were talking about but hasn't posed any questions to me. He's at that age when teens don't want to speak with their parents because it just isn't cool - so the silence for me, except for the joking and ridicule, is normalcy. With my older son, I'd rather sit down and watch a show we both enjoy and share a laugh or two - it helps take the mind off reality for a few minutes. My daughter's reaction perplexes me. She is a physical therapist so she is familiar with the medical field - 3 years of medical school will do that. I know her and my wife have discussed the details and cryed their way through, but she refuses to spend time reading up the way we have. She's told my wife she doesn't want to know the data and statistics. She trusts that we've done enough research for all of us, that we're making the best decisions we can, and just wants to know what she can do to help. Interestingly enough, when we were speaking one night, I was asking about exercises for prostate cancer patients - I read that there are some recomended exercises to help improve continence and general receovery (Kegels, mild core strengthening, etc.). She mentioned that one of her clincal rotations included a stint at a hospital doing in-patient work where she found that there is a whole discipline of physical therapy associated with urology patients to aid in recovery and quality of life. My wife has come around. She wants to focus on the short term - no more crying. We're digesting all available info, making decisions, and moving forward one day at a time. We really don't have a full picture just yet anyway - probably won't until the prostatectomy's done & the path report comes back. Long & short of it, everybody has to deal with this harsh reality in their own way. I don't think I personally bottomed out emotionally yet. I refuse to slow down and give in, mentally or physically. I've got to work hard to provide for my family, probably even more so now. Once surgery comes along and other treatments are required, I might not be able to work at full potential. Slight setback for my wife though. Her brother was just diagnosed with tonsil cancer last week and had surgery today. Petscan showed cancer contained within tonsils & lymph nodes, so they think they got it all. When it rains it pours I guess. Sorry to bore you with all these details, but to be honest, checking this thread has become a bit of a respite for me. Let's call it cheap therapy!
Tp,
Your post was not boring.
I'm relieved to learn your children are not much younger, which I think would increase the difficulty of the situation for everyone involved. I wish the best for your wife's brother. You and your wife must desperately need a vacation about now.
My wife and I are taking an approach similar to yours with our twenty-something kids - briefings minus the nastier details as you put it. I concluded a long time ago when I was the same age and in a similar position as my kids (and your older children) are now in that it's best for parents to be honest with their children regarding unpleasant but unavoidable medical truths. So we told our kids I have an advanced, very aggressive cancer that makes treatment more complex. My wife and I emphasize, however, that it is curable and this is the basis for a great deal of hope for the future. We do not discuss statistics or prognosis with them since the less hopeful outcomes these statistics suggest remain potentially avoidable. Like your kids, ours are poking around on the internet for more information (they may have already found this thread!) and so I also remind them that statistics apply to groups, not individuals. In general we try to share with them the same positive but realistic attitude we have, and injecting a little humor into the situation helps (as you've probably discovered as well, despite everything there are times where things turn ridiculous to the point of being funny). If at some point we learn that metastasis has occurred, we will tell them and let them know that realistically this means I will not be cured. We won't discuss the implications this has for survival curves and I will emphasize instead that even with metastatic disease I could very well be around for a long time. The issue for me isn't whether they have the emotional maturity to handle bad news - after all, they're young adults. Rather, I don't want them to be unnecessarily worrying about hypothetical negative outcomes that are still avoidable. I think this approach would probably need to be modified for much younger kids who have less understanding of cancer, but I suspect this approach (since you're taking it too) is probably working for your teenage son. Similar to your younger son, my kids are sometimes relatively incommunicative but I'm not worried - it can take time to process all this stuff. My hope is that with this strategy they will eventually reach the same point that your daughter has reached - that is, trusting the details to us so they can focus on what they need to do to succeed in their own lives.
I haven't completely bottomed out emotionally either. Occasionally I enter a downward spiral that takes me into what seems like a bottomless pit. It helps when climbing back out to know this downward spiral may have been accelerated by the ADT. Although you and I share similar medical histories, I'm 10 years closer to retirement than you are, which probably makes the future easier for me to contemplate. I love what I do for a living (I'm a scientist) but it's also very stressful and getting rid of stress trumps the enjoyment of doing science at this point - so I will retire as soon as I can.
I'm also very lucky to have a couple of close friends with whom when I need to I can discuss both the good and the bad without worrying that the bad will drag them down into the pit with me, which could happen more easily with my spouse. I hope this is the case for you too, but in any case, I would be honored to take the job. The fact is we clearly have more in common than just prostate cancer and your posts have been very therapeutic for me as well.
Take care, and have a good weekend
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Thanks for the offerMounty said:Tp,
Your post was not boring.
I'm relieved to learn your children are not much younger, which I think would increase the difficulty of the situation for everyone involved. I wish the best for your wife's brother. You and your wife must desperately need a vacation about now.
My wife and I are taking an approach similar to yours with our twenty-something kids - briefings minus the nastier details as you put it. I concluded a long time ago when I was the same age and in a similar position as my kids (and your older children) are now in that it's best for parents to be honest with their children regarding unpleasant but unavoidable medical truths. So we told our kids I have an advanced, very aggressive cancer that makes treatment more complex. My wife and I emphasize, however, that it is curable and this is the basis for a great deal of hope for the future. We do not discuss statistics or prognosis with them since the less hopeful outcomes these statistics suggest remain potentially avoidable. Like your kids, ours are poking around on the internet for more information (they may have already found this thread!) and so I also remind them that statistics apply to groups, not individuals. In general we try to share with them the same positive but realistic attitude we have, and injecting a little humor into the situation helps (as you've probably discovered as well, despite everything there are times where things turn ridiculous to the point of being funny). If at some point we learn that metastasis has occurred, we will tell them and let them know that realistically this means I will not be cured. We won't discuss the implications this has for survival curves and I will emphasize instead that even with metastatic disease I could very well be around for a long time. The issue for me isn't whether they have the emotional maturity to handle bad news - after all, they're young adults. Rather, I don't want them to be unnecessarily worrying about hypothetical negative outcomes that are still avoidable. I think this approach would probably need to be modified for much younger kids who have less understanding of cancer, but I suspect this approach (since you're taking it too) is probably working for your teenage son. Similar to your younger son, my kids are sometimes relatively incommunicative but I'm not worried - it can take time to process all this stuff. My hope is that with this strategy they will eventually reach the same point that your daughter has reached - that is, trusting the details to us so they can focus on what they need to do to succeed in their own lives.
I haven't completely bottomed out emotionally either. Occasionally I enter a downward spiral that takes me into what seems like a bottomless pit. It helps when climbing back out to know this downward spiral may have been accelerated by the ADT. Although you and I share similar medical histories, I'm 10 years closer to retirement than you are, which probably makes the future easier for me to contemplate. I love what I do for a living (I'm a scientist) but it's also very stressful and getting rid of stress trumps the enjoyment of doing science at this point - so I will retire as soon as I can.
I'm also very lucky to have a couple of close friends with whom when I need to I can discuss both the good and the bad without worrying that the bad will drag them down into the pit with me, which could happen more easily with my spouse. I hope this is the case for you too, but in any case, I would be honored to take the job. The fact is we clearly have more in common than just prostate cancer and your posts have been very therapeutic for me as well.
Take care, and have a good weekend
Mounty -
Thanks for the offer - good cheap therapy is hard to find these days! And I hope you realize the same offers stand here. We were all relieved to learn that my wife's brother is doing well. Even with all that stuff removed (tonsils, lymph nodes, etc.), he was released within 48 hours. He is speaking well and resting comfortably at home. He will have to undergo radiation but the prognosis is good. With that worry somewhat behind us, as I flopped into bed last night, out of the blue, my wife asks if I'm nervous about the upcoming consult on Tuesday. Well, if I wasn't nervous enough up to that point........ I thought before I responded and then siad - yes and no. Well, what do you mean by yes and no she asked. I told you us guys don't open up very well. She continued that for now, she looks at me and I appeaar perfectly normal and now that bubble might be burst by the next bit of bad news. While I am nervous about what he might say, the flip side is what worse news can he offer at this point based on the info at hand. Fact is, I am ready to move forward. If he concurs with my urologist, and my urologist sees no real benefit from waiting for the hormones to act any longer, I'd prefer to get this thing out, do the recon, and keep moving forward. The sitting and waiting, contemplating, second guessing - that's more troublesome to me. We went shopping with my daughter and her husband (they were just married in October 2012) for some supplies for their new house at Home Depot last night. I'm a civil engineer working as a construction project manager (talk about a stressful job) so anything involving home improvement is like therapy for me. Heck, just walking through Home Depot is like being a kid in a candy store for me. I figured it would keep my mind occupied and help them cross some things off their list at the same time. She didn't want to ask me for any help since I was diagnosed, but I told her to get me while she can. I figure I might be limited in climbing on roofs or in attics for some time after the prostataecomy. Have a good weekend yourself - Happy Mother's Day to all!
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tp23 said:
Thanks for the offer
Mounty -
Thanks for the offer - good cheap therapy is hard to find these days! And I hope you realize the same offers stand here. We were all relieved to learn that my wife's brother is doing well. Even with all that stuff removed (tonsils, lymph nodes, etc.), he was released within 48 hours. He is speaking well and resting comfortably at home. He will have to undergo radiation but the prognosis is good. With that worry somewhat behind us, as I flopped into bed last night, out of the blue, my wife asks if I'm nervous about the upcoming consult on Tuesday. Well, if I wasn't nervous enough up to that point........ I thought before I responded and then siad - yes and no. Well, what do you mean by yes and no she asked. I told you us guys don't open up very well. She continued that for now, she looks at me and I appeaar perfectly normal and now that bubble might be burst by the next bit of bad news. While I am nervous about what he might say, the flip side is what worse news can he offer at this point based on the info at hand. Fact is, I am ready to move forward. If he concurs with my urologist, and my urologist sees no real benefit from waiting for the hormones to act any longer, I'd prefer to get this thing out, do the recon, and keep moving forward. The sitting and waiting, contemplating, second guessing - that's more troublesome to me. We went shopping with my daughter and her husband (they were just married in October 2012) for some supplies for their new house at Home Depot last night. I'm a civil engineer working as a construction project manager (talk about a stressful job) so anything involving home improvement is like therapy for me. Heck, just walking through Home Depot is like being a kid in a candy store for me. I figured it would keep my mind occupied and help them cross some things off their list at the same time. She didn't want to ask me for any help since I was diagnosed, but I told her to get me while she can. I figure I might be limited in climbing on roofs or in attics for some time after the prostataecomy. Have a good weekend yourself - Happy Mother's Day to all!
Tp,
Your counteroffer is accepted.
I'm also planning to spend time on home repairs, but on our own house. We plan to downsize within the next year. I'm not very good at home repairs but I enjoy making them and Home Depot helps make it easier.
My walk to work each day these days takes me past a giant hole in the ground that will soon become the basement of a new hospital. Now I'll be wondering if you're one of the guys directing construction.
I'll be very interested to learn about your consult on Tuesday. It's been quite difficult for me to reach a decision on surgery vs. radiation, especially because I'm being told by surgeons to go with radiation and by radiation oncologists to go with surgery. My next consult is on Monday with a surgeon and a radiation oncologist. I'll post what I learn shortly after.
I hope you and your wife and family have a wonderful Mother's Day.
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Multimodal TherapyMounty said:Tp,
Your counteroffer is accepted.
I'm also planning to spend time on home repairs, but on our own house. We plan to downsize within the next year. I'm not very good at home repairs but I enjoy making them and Home Depot helps make it easier.
My walk to work each day these days takes me past a giant hole in the ground that will soon become the basement of a new hospital. Now I'll be wondering if you're one of the guys directing construction.
I'll be very interested to learn about your consult on Tuesday. It's been quite difficult for me to reach a decision on surgery vs. radiation, especially because I'm being told by surgeons to go with radiation and by radiation oncologists to go with surgery. My next consult is on Monday with a surgeon and a radiation oncologist. I'll post what I learn shortly after.
I hope you and your wife and family have a wonderful Mother's Day.
Ricky 001's post above qutoes Dr. Cooperberg, "Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer." The study referenced is the only study that I know of that looks at survival time and not just the rise in PSA. The study finds surgery to be the most effective treatment followed closely by a combination of IMRT & Brachytherapy. The quote makes reference to the fact that for men with high-risk disease, surgery must be combined with another therapy to yeild the desired results. Presently, there sre few choices for the second modality, and most men choose radiation.
This science indicates that the best treatments for long term survival with high-risk disease presently boils down to surgery plus a second modality (most likely radiation), or combined IMRT and Brachytherapy. Men with high risk disease need to dismiss the idea of a single therapy. Should you choose surgery, the good news is that the second modality might not be needed immediately and possibly not at all. Pick a cancer center that will use imaging capable of tracking your disease. The risk of recurrence will be very high. It will take 10 years before you can relax, and even then, recurrence is still possible. Should you choose radiation, the combined therapies will take about 10 to 11 weeks. Check the center's statistics. You should be looking at around 80% treatment success at both the 10 & 15 year mark. According to the Cooperberg study, either choice should serve you well. Feel free to contact me via CSN email if you have additional questions.
I wish you success on your journey.
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caseyh said:
Multimodal Therapy
Ricky 001's post above qutoes Dr. Cooperberg, "Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer." The study referenced is the only study that I know of that looks at survival time and not just the rise in PSA. The study finds surgery to be the most effective treatment followed closely by a combination of IMRT & Brachytherapy. The quote makes reference to the fact that for men with high-risk disease, surgery must be combined with another therapy to yeild the desired results. Presently, there sre few choices for the second modality, and most men choose radiation.
This science indicates that the best treatments for long term survival with high-risk disease presently boils down to surgery plus a second modality (most likely radiation), or combined IMRT and Brachytherapy. Men with high risk disease need to dismiss the idea of a single therapy. Should you choose surgery, the good news is that the second modality might not be needed immediately and possibly not at all. Pick a cancer center that will use imaging capable of tracking your disease. The risk of recurrence will be very high. It will take 10 years before you can relax, and even then, recurrence is still possible. Should you choose radiation, the combined therapies will take about 10 to 11 weeks. Check the center's statistics. You should be looking at around 80% treatment success at both the 10 & 15 year mark. According to the Cooperberg study, either choice should serve you well. Feel free to contact me via CSN email if you have additional questions.
I wish you success on your journey.
Thanks Casey,
In fact I will pursue a multimodal therapy approach. At this point the options proposed are 1. RT + androgen deprivation therapy (I'm already undergoing ADT) and 2. Surgery + RT + ADT (or perhaps surgery + ADT).
The Warde et al. study cited in the article Rickey posted (and this study is also the subject of Cooperberg's Lancet editorial) clearly points to a better survival outcome for RT + ADT compared to ADT alone. However, in my case, ADT alone is not on the table. What I have not yet been able to find is evidence that surgery + RT + ADT is likely to provide a superior outcome compared to RT + ADT. Although Cooperberg implies in his interview that the evidence exists, his editorial simply points out that this question remains unanswered, mostly because it's tough to address it in a randomized trial similar to the trial Warde et al. reported for RT + ADT vs. ADT alone. I'm confused by your statement that "This science indicates that the best treatments for long term survival with high-risk disease presently boils down to surgery plus a second modality (most likely radiation), or combined IMRT and Brachytherapy". You appear to be referring to the Warde et al. study, but neither surgery nor brachytherapy were addressed in this study. I would be grateful if you could steer me toward the study you were referring to in your post, as well as any other studies that suggest a multimodal approach that begins with surgery provides a better outcome.
It's certainly encouraging to hear from guys like you who have been in this business a long time. I hope things are going well.
Thanks again, and best wishes. I was thinking of emailing you with these questions but perhaps this exchange will be interesting to other members of the forum, especially those who also have high risk disease.
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The Cooperberg StudyMounty said:Thanks Casey,
In fact I will pursue a multimodal therapy approach. At this point the options proposed are 1. RT + androgen deprivation therapy (I'm already undergoing ADT) and 2. Surgery + RT + ADT (or perhaps surgery + ADT).
The Warde et al. study cited in the article Rickey posted (and this study is also the subject of Cooperberg's Lancet editorial) clearly points to a better survival outcome for RT + ADT compared to ADT alone. However, in my case, ADT alone is not on the table. What I have not yet been able to find is evidence that surgery + RT + ADT is likely to provide a superior outcome compared to RT + ADT. Although Cooperberg implies in his interview that the evidence exists, his editorial simply points out that this question remains unanswered, mostly because it's tough to address it in a randomized trial similar to the trial Warde et al. reported for RT + ADT vs. ADT alone. I'm confused by your statement that "This science indicates that the best treatments for long term survival with high-risk disease presently boils down to surgery plus a second modality (most likely radiation), or combined IMRT and Brachytherapy". You appear to be referring to the Warde et al. study, but neither surgery nor brachytherapy were addressed in this study. I would be grateful if you could steer me toward the study you were referring to in your post, as well as any other studies that suggest a multimodal approach that begins with surgery provides a better outcome.
It's certainly encouraging to hear from guys like you who have been in this business a long time. I hope things are going well.
Thanks again, and best wishes. I was thinking of emailing you with these questions but perhaps this exchange will be interesting to other members of the forum, especially those who also have high risk disease.
Mounty,
Perhaps I did not state my points clearly. Here are a few direct quotes from Dr. Cooperberg:
“For intermediate- and high-risk cancers, both survival and cost generally favored surgery over other forms of treatment -- although combination external-beam radiation and brachytherapy together were comparable in terms of quality of life-adjusted survival for high-risk prostate cancer.”
“There were no statistically significant differences among surgical methods, which tended to be more effective than RT methods, with the exception of combined external beam + brachytherapy for high-risk disease.”
Rickey001's post:
“However, this study doesn't determine what is the best treatment for high-risk prostate cancer, Cooperberg said. "There are studies showing that the best treatment for high-risk disease starts with surgery and then radiation and hormones as necessary," he noted.
Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer."
I believe that Cooperberg is stating that although other studies have concluded “that that the best treatment for high-risk disease starts with surgery and then radiation and hormones as necessary," he does not have the evidence to make that determination in this study.Dr. Peter Carroll, chair of the UCSF Department of Urology and leader of the Prostate Program at the UCSF Helen Diller Family Comprehensive Cancer Center. Carroll is senior author on the paper. states, "This is a clear signal to the physician community that prostatectomy should be considered for men with higher-risk prostate cancer. In many cases, surgery would be part of a multimodal treatment approach, including adjuvant radiation or systemic treatments based on the pathology and early PSA response."
Both Dr. Cooperberg and Dr. Carroll agree that multimodal treatment is generally appropriate for men with high risk PCa. Dr. Caroll indicates that adjuvant radiation or systemic treatment might be appropriate in certain cases. I did not mention systemic treatment, including hormones, because although it might be appropriate in some cases,for the most part, these treatments are not curative. Hormones do enhance patient's response to radiation. Presently, I don't know of any mainstream therapies other than radiation (including HT), that are potentially curative and being used for multimodal treatment. There are not a lot of choices.
I hope that this clears the any confusion that may have resulted from the above post.I am impressed with your ability to systematically examine your options at a time of great stress in your life. I wish you good luck and a successful outcome.
Casey
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Rock and a hard place
That's kind of where you are. When I was diagnosed the robot just csme out. My doc only did cut n stitch. No discussion of seeds chemo etc. I found 2 DaVinci surgeons. One in Austin Tx about 3hrs away and one in Houston(55 miles but still about 3 hours) In my research at the time one of the leaders was at the Ford Clinic in Cleveland OH. He knew both surgeons and sent me to Austin.
We went thru the surgery, is was confined and no other treatmentn needed. I got my PSA checked every quarter for a few yead noe twice a year, always less than .01 Labs dont like to say 0, guess its a CYA.
I've had not many problems with incontinenct mostly when I drink beer or am excercising.Im also not able to have an erection of any size but do hae the sensation. I Have not had to do anything else.
I'm really lucky, I've had 10 years of not problem. I see many guys protest that it'll be the end of the world if they can't have sex, yes it's nice but breathing is better and I wake up on the green side of the grass every day.
Do your home work, be pushy in your quetions just don't accept everything you're told you'll never be 100% sure of your choice but rsearch the best you can and go forward. Good luck jj
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Prostate Snatchershopeful and optimistic said:Thank you for the compliment
Basically, I have found that it is important to avoid stress, live in the present, not the past or future...basically enjoy the moment. I look for positive things to do, and do them.I work at having an upbeat attitude, at being positive...I look for the bagel, not the hole.
When we are diagnosed we all go through shock and all the negative emotions that go with it for the first 2 to 3 months. this will significant lessen. I for one find that learning about PCa and helping others with PCa help me a lot. In many ways my diagnosis has been a positive experience.
Tape recorder....I suggest that you bring a tape recorder to your doc meetings and ask if you can record the conversation...also bring your wife or a trusted friend or advocate.
Even though your cancer is aggressive, it is manageable, and you can have many years of life ahead of you.....there are many examples of men who are doing just this.
I had mentioned to you to have a Medical Oncologist lead your medical team. I also had mentioned that there are not many of these Medical Oncologists who specialize in Prostate Cancer. I now remember where I saw a list of MO's that specialize only in Prostate Cancer....there is a book, "Invasion of the Prostate Snatchers: An Essential Guide to Managing Prostate Cancer for Patients and their Families [Ralph Blum, Mark M.D. Scholz]"
Although this book is not oriented toward more aggressive prostate cancer and is oriented toward active surveillance for low aggressive disease, I beleive that there is a list of Medical Oncologists who specialize in Prostate Cancer at the back of the book.( I don't have this book in front of me since I borrowed it to read, however another member of our club who posts here may be able to validate this source.
P.S. don't forget to take some time off from this, and spend some quality time with your family. You will do fine.
Hopeful,
More sage advice - thanks again. "Invasion of the Prostate Snatchers" is another book my wife bought for me and I read it cover to cover this weekend. Very informative, and even entertaining at times. I completely grokked (as my kids would say) the comment in the book by a PCa patient that hormone therapy transformed beautiful women into something about as interesting to look at as couch upholstery.
I could not find in the book a list of the fifty medical oncologists that specialize in prostate cancer. In any case I now have a stellar academic urologist from a NCI Comprehensive Cancer Center on board, someone I'm quite comfortable with running the show.
Best wishes . . .
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CuresMounty said:Tp,
Your post was not boring.
I'm relieved to learn your children are not much younger, which I think would increase the difficulty of the situation for everyone involved. I wish the best for your wife's brother. You and your wife must desperately need a vacation about now.
My wife and I are taking an approach similar to yours with our twenty-something kids - briefings minus the nastier details as you put it. I concluded a long time ago when I was the same age and in a similar position as my kids (and your older children) are now in that it's best for parents to be honest with their children regarding unpleasant but unavoidable medical truths. So we told our kids I have an advanced, very aggressive cancer that makes treatment more complex. My wife and I emphasize, however, that it is curable and this is the basis for a great deal of hope for the future. We do not discuss statistics or prognosis with them since the less hopeful outcomes these statistics suggest remain potentially avoidable. Like your kids, ours are poking around on the internet for more information (they may have already found this thread!) and so I also remind them that statistics apply to groups, not individuals. In general we try to share with them the same positive but realistic attitude we have, and injecting a little humor into the situation helps (as you've probably discovered as well, despite everything there are times where things turn ridiculous to the point of being funny). If at some point we learn that metastasis has occurred, we will tell them and let them know that realistically this means I will not be cured. We won't discuss the implications this has for survival curves and I will emphasize instead that even with metastatic disease I could very well be around for a long time. The issue for me isn't whether they have the emotional maturity to handle bad news - after all, they're young adults. Rather, I don't want them to be unnecessarily worrying about hypothetical negative outcomes that are still avoidable. I think this approach would probably need to be modified for much younger kids who have less understanding of cancer, but I suspect this approach (since you're taking it too) is probably working for your teenage son. Similar to your younger son, my kids are sometimes relatively incommunicative but I'm not worried - it can take time to process all this stuff. My hope is that with this strategy they will eventually reach the same point that your daughter has reached - that is, trusting the details to us so they can focus on what they need to do to succeed in their own lives.
I haven't completely bottomed out emotionally either. Occasionally I enter a downward spiral that takes me into what seems like a bottomless pit. It helps when climbing back out to know this downward spiral may have been accelerated by the ADT. Although you and I share similar medical histories, I'm 10 years closer to retirement than you are, which probably makes the future easier for me to contemplate. I love what I do for a living (I'm a scientist) but it's also very stressful and getting rid of stress trumps the enjoyment of doing science at this point - so I will retire as soon as I can.
I'm also very lucky to have a couple of close friends with whom when I need to I can discuss both the good and the bad without worrying that the bad will drag them down into the pit with me, which could happen more easily with my spouse. I hope this is the case for you too, but in any case, I would be honored to take the job. The fact is we clearly have more in common than just prostate cancer and your posts have been very therapeutic for me as well.
Take care, and have a good weekend
We all hate it when they tell us what it really is. This is usually after surgery. Anyhow my main recommendation is tell your children to not surf the web. Basically it will tell them your survival stats. VA said I would make it 2.88 years. Now at three years, but can not say how much longer I will be here. At least I beat their estimates. Most estimates give stage four about five years at most. At first it seems so short, but you begin to realize how great time is. If you sit around worrying time will go slow. Myou live it, and it will go fast. Live your life. Enjoy it. Be selfish, if needed, because it is your life.
Good luck,
Mike
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shipjim said:
Rock and a hard place
That's kind of where you are. When I was diagnosed the robot just csme out. My doc only did cut n stitch. No discussion of seeds chemo etc. I found 2 DaVinci surgeons. One in Austin Tx about 3hrs away and one in Houston(55 miles but still about 3 hours) In my research at the time one of the leaders was at the Ford Clinic in Cleveland OH. He knew both surgeons and sent me to Austin.
We went thru the surgery, is was confined and no other treatmentn needed. I got my PSA checked every quarter for a few yead noe twice a year, always less than .01 Labs dont like to say 0, guess its a CYA.
I've had not many problems with incontinenct mostly when I drink beer or am excercising.Im also not able to have an erection of any size but do hae the sensation. I Have not had to do anything else.
I'm really lucky, I've had 10 years of not problem. I see many guys protest that it'll be the end of the world if they can't have sex, yes it's nice but breathing is better and I wake up on the green side of the grass every day.
Do your home work, be pushy in your quetions just don't accept everything you're told you'll never be 100% sure of your choice but rsearch the best you can and go forward. Good luck jj
Great imagery Jim,
One of my docs described my prostate as "extremely hard". Another one suggested I must have a rock for a brain because I skipped a few years of PSA tests. So there you go - most of me is truly between a rock and a hard place.
I appreciate your comments. I understand your remarks about sex. In fact I'm relieved that the strong sex drive I've enjoyed has been at least temporarily tempered by hormone treatment. It makes it easier to focus on issues that at this time are more important. I would point out however, that this is easier for me at 61 than it would be if I were younger. I feel very badly for guys who are going through this in their 40's and 50's and even earlier in their lives.
I want to emphasize how valuable it is to those of us recently diagnosed for you and others to tell your stories about long term success with this disease. You may or may not recall that the initial diagnosis appears to be a sentence to a rapid and painful death. Of course this isn't true, but guys like you make it easier to understand this quickly.
Best wishes
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Samsungtech1 said:
Cures
We all hate it when they tell us what it really is. This is usually after surgery. Anyhow my main recommendation is tell your children to not surf the web. Basically it will tell them your survival stats. VA said I would make it 2.88 years. Now at three years, but can not say how much longer I will be here. At least I beat their estimates. Most estimates give stage four about five years at most. At first it seems so short, but you begin to realize how great time is. If you sit around worrying time will go slow. Myou live it, and it will go fast. Live your life. Enjoy it. Be selfish, if needed, because it is your life.
Good luck,
Mike
Seriously Mike? Tell my twenty-something kids not to surf the Web?
I'm kidding of course and I understand your reasoning, even if it's impossible to apply it. The fact is, telling my daughters not to surf the web for information relevant to my disease would be like telling them to join a convent. It ain't gonna to happen.
What I do tell them is that they have to remember that statistics applies to populations, not individuals. You're a good case in point, because you're beating the odds. I suspect your attitude toward life in general is partly responsible.
Best wishes
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Mark M.D. ScholzMounty said:Prostate Snatchers
Hopeful,
More sage advice - thanks again. "Invasion of the Prostate Snatchers" is another book my wife bought for me and I read it cover to cover this weekend. Very informative, and even entertaining at times. I completely grokked (as my kids would say) the comment in the book by a PCa patient that hormone therapy transformed beautiful women into something about as interesting to look at as couch upholstery.
I could not find in the book a list of the fifty medical oncologists that specialize in prostate cancer. In any case I now have a stellar academic urologist from a NCI Comprehensive Cancer Center on board, someone I'm quite comfortable with running the show.
Best wishes . . .
is a Medcial Onocolist who specializes in Prostate Cancer. I heard him speak a few times at a support group that I attend. There are also other Medical Oncologists in practice with him in Marina Del Rey in CA.
If I were you I would do research for a Medical Oncologist...What are the credentials of the Medical Oncologist the hospital where you are a patient?.at the least you will get a somewhat unbiased medical opinion of a treatment(s)..but of course this is your decision.
I read the book Invasion of the Prostate Snachers that Kongo recommended at about the time that it was published. I felt that the first seven or eight chapters was my auto-biography. I personally came across all kinds of situations where some of the docs to put it mildly did not have my best interest at heart. Additionally since I am in So. CA. I knew about all the docs that were mentioned.
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Second opinionMounty said:Great imagery Jim,
One of my docs described my prostate as "extremely hard". Another one suggested I must have a rock for a brain because I skipped a few years of PSA tests. So there you go - most of me is truly between a rock and a hard place.
I appreciate your comments. I understand your remarks about sex. In fact I'm relieved that the strong sex drive I've enjoyed has been at least temporarily tempered by hormone treatment. It makes it easier to focus on issues that at this time are more important. I would point out however, that this is easier for me at 61 than it would be if I were younger. I feel very badly for guys who are going through this in their 40's and 50's and even earlier in their lives.
I want to emphasize how valuable it is to those of us recently diagnosed for you and others to tell your stories about long term success with this disease. You may or may not recall that the initial diagnosis appears to be a sentence to a rapid and painful death. Of course this isn't true, but guys like you make it easier to understand this quickly.
Best wishes
Mounty -
I had a consult with a urological oncologist today - major cancer center, credentials out the wazoo......... He concurred with all my cuurent urologist's recommendations and course of treatment. And then he performed a DRE and immediately concluded that my prostate was too hard - like a rock - and that he would not operate on it. When I pushed as to why, he gave up only a bit more but basically stated it was too fixed and there would be way too many complications in trying to remove it. He understood my urologists's thoughts regarding the use of ADT to improve the chances of a successful surgery, but in his mind it just isn't going to happen. Now in all fairness, my urologist did say he would not attempt to remove it when I first started treatment - he said the same thing - too much collateral damage. My urologist's hope, and mine, (apprarently false hope) was that the bicalutamide and Lupron would shrink the tumor and make surgey a viable option. Well my symptoms have improved, but I guess not to the point where surgery is even an option. Well, when I go back to my urologist on Monday for my next Lupron injection, I'm curious if he will now come to the same realization as today's specialist did. My biggest concern now is that my urinary symptoms have greatly improved thus far, and I thought the RP would help alleviate them long term. If the urinary symptoms recur after radiaition without surgery, there's not a lot of options left. Felt like I was dealt another punch to the gut today. Even if another urologist was to tell me they thought they could remove it successfully, I don't think I could be comfortable moving forward hearing what I heard today. At my age and at my level of activity, incontinence is just not a realistic lifestyle option. Seems like we're back at square one again. What's worse is that we were just getting over the intitial shock - and now my wife's fear about going to this consult has been realized. Frankly, I think I'm more distraught now then I was when I was first diagnosed.
Didn't you have a consult scheduled for yesterday? Any good news to report?
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second opiniontp23 said:Second opinion
Mounty -
I had a consult with a urological oncologist today - major cancer center, credentials out the wazoo......... He concurred with all my cuurent urologist's recommendations and course of treatment. And then he performed a DRE and immediately concluded that my prostate was too hard - like a rock - and that he would not operate on it. When I pushed as to why, he gave up only a bit more but basically stated it was too fixed and there would be way too many complications in trying to remove it. He understood my urologists's thoughts regarding the use of ADT to improve the chances of a successful surgery, but in his mind it just isn't going to happen. Now in all fairness, my urologist did say he would not attempt to remove it when I first started treatment - he said the same thing - too much collateral damage. My urologist's hope, and mine, (apprarently false hope) was that the bicalutamide and Lupron would shrink the tumor and make surgey a viable option. Well my symptoms have improved, but I guess not to the point where surgery is even an option. Well, when I go back to my urologist on Monday for my next Lupron injection, I'm curious if he will now come to the same realization as today's specialist did. My biggest concern now is that my urinary symptoms have greatly improved thus far, and I thought the RP would help alleviate them long term. If the urinary symptoms recur after radiaition without surgery, there's not a lot of options left. Felt like I was dealt another punch to the gut today. Even if another urologist was to tell me they thought they could remove it successfully, I don't think I could be comfortable moving forward hearing what I heard today. At my age and at my level of activity, incontinence is just not a realistic lifestyle option. Seems like we're back at square one again. What's worse is that we were just getting over the intitial shock - and now my wife's fear about going to this consult has been realized. Frankly, I think I'm more distraught now then I was when I was first diagnosed.
Didn't you have a consult scheduled for yesterday? Any good news to report?
Tp,
I feel badly for you.
In fact I did have another consult yesterday and the outcome was remarkably similar to yours, although in my case I wasn't surprised - based on earlier consults things were clearly headed in this direction. I think I can allay some of your concerns however and I'm anxious to explain why. Unfortunately I'm on kitchen duty this evening and so I won't be able to respond for another few hours. Once I'm finished, I'll be in touch again, this time by email.
Best wishes
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surgery vs. radiation decision
It's been two weeks since I asked for help from this forum deciding whether surgery or radiation + hormone therapy is the best course of treatment for the prostate cancer I was diagnosed with in late April. After numerous medical consults and valuable advice from many of you and other friends, I've arrived at a decision about treatment. I’m going to describe this decision and the reasoning behind it with the hope this information may help others with similar cases of high grade localized prostate cancer.
A brief summary of my recent medical history: I'm 61 and in very good health other than PCa. There's a family history of PCa (father and one brother). Gradually escalating symptoms of urinary blockage for several months eventually led to bloodwork that produced a PSA reading of 34. A biopsy several weeks later detected 30 - 90% malignant cells in 14 out of 14 cores, all Gleason grades of 4 + 4 or 4 + 5, leading to a Gleason score of 9 (4 + 5). A second read of the slides by a pathologist at a NCI Cancer Center was similar except that the fraction of malignant cells was increased to 50 – 100%. A bone scan and multiple CT scans have failed to detect metastatic disease in bones or in pelvic lymph nodes.
I consulted with five doctors after receiving the diagnosis from the community practice urologist who performed the biopsy - three were surgeons and two were radiation oncologists. All three surgeons were Chairs of Urology at major academic medical centers, including an NCI-designated Comprehensive Cancer Center. One radiation oncologist was the Chair of Radiation Medicine at the NCI Comprehensive Cancer Center. The other radiation oncologist practices medicine in a community practice setting. I'm lucky to have insurance that pays for multiple consults (although I did have to turn down one recommended consult because it was out of my insurance network).
I've also obtained an enormous amount of information from books, this forum and other internet sources that I trust (National Institutes of Health and other government websites and organizations such as the American Cancer Society) and from the primary medical literature - that is, peer-reviewed studies published in medical journals. In evaluating all this information I employed two criteria to define what for me would be an ideal treatment outcome, in order of importance: 1. long term disease-free survival; 2. a quality of life that includes the following ranked in importance to me - no urinary or bowel incontinence > no permanent loss of sexual ability > no long term side effects of hormone therapy such as diabetes, heart disease and breast enlargement (the last was a big one). In deciding on treatment I also considered logistical factors that mostly applied to radiation therapy, which would take place over a period of several weeks. These included the ability to be treated without a requirement to travel great distances each day or the need to arrange for temporary housing in a distant city for a period of many weeks.
Initially one surgeon recommended surgery and two recommended radiation + hormone therapy. The radiation oncologists rendered a split decision, one for surgery and one for radiation + HT. Recently the arguments for radiation + hormone therapy became so compelling that all these doctors now agree this is the best course of action for me. Their reasoning is that the combination of high Gleason score, high PSA, large tumor volume and digital rectal exams performed since the biopsy that strongly suggest extraprostatic invasion of the tumor into surrounding tissues all argue that surgery would be unlikely to remove all of the tumor and would carry a high risk of urinary incontinence. The argument for radiation therapy + hormone therapy for treatment of localized advanced disease is in my opinion supported by the medical literature. Although some studies suggest (based on statistical analyses) that surgery might be the better option, many of these studies have been criticized by other experts as flawed. Other studies more clearly point to a small but statistically significant advantage to radiation + hormone therapy. It's important for anyone reading this post to keep in mind that all of these considerations specifically apply to localized (i.e., not metastatic) advanced disease (Gleason 8 - 10 with evidence for extra-prostatic extension), and not less advanced prostate cancer.
Consequently, I have decided to pursue image-guided radiation therapy + hormone therapy at the NCI Comprehensive Cancer Center I visited for consults. I considered a number of other treatment modalities as well. These included brachytherapy (radioactive implants), high-intensity focused ultrasound (HIFU), Cyberknife and proton beam therapy. Although each of these modalities has proven successful in some cases, I ruled them out in my case for a variety of reasons, mostly related to a lack of a well-established track record for success for treating prostate cancer or because they were inappropriate for treatment of more advanced prostate cancer.
Please keep in mind that I'm describing what I think is the best decision for me; the best decision for others would need to take into account factors that are unique to other individuals, in addition to those that might be common to my case. I'm very grateful to everyone who posted valuable information to this thread and to many others who posted valuable information to other threads as well, all of which helped me to reach this decision. If I didn't know any better, based on what I've learned from this forum I would argue that prostate cancer mostly afflicts people (men and women) who represent the best of humanity. I will continue to post to other threads but I do not plan to post to this thread again except to respond to questions, which I would be happy to answer.
Best wishes,
Bill (Mounty is my beloved dog)
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My best wishes for youMounty said:surgery vs. radiation decision
It's been two weeks since I asked for help from this forum deciding whether surgery or radiation + hormone therapy is the best course of treatment for the prostate cancer I was diagnosed with in late April. After numerous medical consults and valuable advice from many of you and other friends, I've arrived at a decision about treatment. I’m going to describe this decision and the reasoning behind it with the hope this information may help others with similar cases of high grade localized prostate cancer.
A brief summary of my recent medical history: I'm 61 and in very good health other than PCa. There's a family history of PCa (father and one brother). Gradually escalating symptoms of urinary blockage for several months eventually led to bloodwork that produced a PSA reading of 34. A biopsy several weeks later detected 30 - 90% malignant cells in 14 out of 14 cores, all Gleason grades of 4 + 4 or 4 + 5, leading to a Gleason score of 9 (4 + 5). A second read of the slides by a pathologist at a NCI Cancer Center was similar except that the fraction of malignant cells was increased to 50 – 100%. A bone scan and multiple CT scans have failed to detect metastatic disease in bones or in pelvic lymph nodes.
I consulted with five doctors after receiving the diagnosis from the community practice urologist who performed the biopsy - three were surgeons and two were radiation oncologists. All three surgeons were Chairs of Urology at major academic medical centers, including an NCI-designated Comprehensive Cancer Center. One radiation oncologist was the Chair of Radiation Medicine at the NCI Comprehensive Cancer Center. The other radiation oncologist practices medicine in a community practice setting. I'm lucky to have insurance that pays for multiple consults (although I did have to turn down one recommended consult because it was out of my insurance network).
I've also obtained an enormous amount of information from books, this forum and other internet sources that I trust (National Institutes of Health and other government websites and organizations such as the American Cancer Society) and from the primary medical literature - that is, peer-reviewed studies published in medical journals. In evaluating all this information I employed two criteria to define what for me would be an ideal treatment outcome, in order of importance: 1. long term disease-free survival; 2. a quality of life that includes the following ranked in importance to me - no urinary or bowel incontinence > no permanent loss of sexual ability > no long term side effects of hormone therapy such as diabetes, heart disease and breast enlargement (the last was a big one). In deciding on treatment I also considered logistical factors that mostly applied to radiation therapy, which would take place over a period of several weeks. These included the ability to be treated without a requirement to travel great distances each day or the need to arrange for temporary housing in a distant city for a period of many weeks.
Initially one surgeon recommended surgery and two recommended radiation + hormone therapy. The radiation oncologists rendered a split decision, one for surgery and one for radiation + HT. Recently the arguments for radiation + hormone therapy became so compelling that all these doctors now agree this is the best course of action for me. Their reasoning is that the combination of high Gleason score, high PSA, large tumor volume and digital rectal exams performed since the biopsy that strongly suggest extraprostatic invasion of the tumor into surrounding tissues all argue that surgery would be unlikely to remove all of the tumor and would carry a high risk of urinary incontinence. The argument for radiation therapy + hormone therapy for treatment of localized advanced disease is in my opinion supported by the medical literature. Although some studies suggest (based on statistical analyses) that surgery might be the better option, many of these studies have been criticized by other experts as flawed. Other studies more clearly point to a small but statistically significant advantage to radiation + hormone therapy. It's important for anyone reading this post to keep in mind that all of these considerations specifically apply to localized (i.e., not metastatic) advanced disease (Gleason 8 - 10 with evidence for extra-prostatic extension), and not less advanced prostate cancer.
Consequently, I have decided to pursue image-guided radiation therapy + hormone therapy at the NCI Comprehensive Cancer Center I visited for consults. I considered a number of other treatment modalities as well. These included brachytherapy (radioactive implants), high-intensity focused ultrasound (HIFU), Cyberknife and proton beam therapy. Although each of these modalities has proven successful in some cases, I ruled them out in my case for a variety of reasons, mostly related to a lack of a well-established track record for success for treating prostate cancer or because they were inappropriate for treatment of more advanced prostate cancer.
Please keep in mind that I'm describing what I think is the best decision for me; the best decision for others would need to take into account factors that are unique to other individuals, in addition to those that might be common to my case. I'm very grateful to everyone who posted valuable information to this thread and to many others who posted valuable information to other threads as well, all of which helped me to reach this decision. If I didn't know any better, based on what I've learned from this forum I would argue that prostate cancer mostly afflicts people (men and women) who represent the best of humanity. I will continue to post to other threads but I do not plan to post to this thread again except to respond to questions, which I would be happy to answer.
Best wishes,
Bill (Mounty is my beloved dog)
I am glad that you did research so you could make a decision that you are comfortable with.....I hope that this will bring peace of mind to you....wishing you the very best.
0
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