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Hi guys,
I was diagnosed about a month ago...PSA 3.3,Gleason 3 + 3=6,1 positive from 12 plugs. Urologist didn't stage, but says it,s early stage and slow growing. He recommended surgery, and admitted he doesn't know much about the other treatments. He did mention watchful waiting. So, until I found this site, I was on my own!
I have a few miscellaneous questions in no particular order:
1. I have a friend receiving Proton at MD Anderson now. He says their equipment is better than Loma Linda because it's newer. For example, he said they treat from both sides instead of one side at a time. Does anyone know anything about that? I wondered if Loma Linda's equipment is "updated", as they have been doing it for 20+years.
2. I noticed some centers do not use the "balloon". What's up with that? I know it is supposed to protect the rectum. But if others don't use it, it sure would be nice!
3. Once and for all, is the 10 year survival rate with protons as good as surgery? Seems like there are not any truly unbiased studies that compare them.
4. I read somewhere that initially surgery causes ED and incontinence, but radiation tends to cause ED later. Is that true, and if so, does that include proton radiation?
5. Blue Cross of Miss. denied my coverage for proton treatment. The top man went to Med School with my urologist, and told him an appeal would be a waste of time, as he would deny it anyway. He told my urologist that their internal studies determined proton was no better than photon. Thus, they won't pay. Don't think it has anything to do with the price do you? I do think there is a huge argument within the medical community about all these treatments.
6. I plan to go to Loma Linda, as I am having to pay the $73,000 myself. I checked the Florida center($136,000) and MD Andersons($180,000), and they were not even close. Does anyone know if any of the other centers are close the the Loma Linda price? For guys like me with no insurance, we're lucky to have Loma Linda.
All the guys here go to Birmingham, AL to Dr. Scott Tulley. He is apparently a wonderful surgeon, and has done around 5,000 robotically according to their website. We are lucky to have him here. Even so, I talked to some friends who had the surgery. Seems like about half do well, and half struggle with the side effects. All my friends say I should have the surgery. But I'm pretty well set on proton after reading till I'm cross-eyed! Very few people here know anything about proton, including apparently the doctors. I talked to a local radiation oncologist, and he says proton is pure smoke, and that photons are just as good, and more exact. To his credit, however, he recommended surgery, not radiation as you would think. He said that if the surgery fails, i would have a "lifeboat" with radiation. So, to his credit, he did not recommend his own treatment as so many do.
G’day Sam. To make it simpler to understand my answers to your questions for anyone reading this, I have included your questions and followed them with my answers. So here goes:
1. I have a friend receiving Proton at MD Anderson now. He says their equipment is better than Loma Linda because it's newer. For example, he said they treat from both sides instead of one side at a time. Does anyone know anything about that? I wondered if Loma Linda's equipment is "updated", as they have been doing it for 20+years. I cannot comment on the ability of MD Anderson to do a better job or if the equipment is superior to Loma Linda. What I can say after all these years is that there is no doubt in my mind that the skill of the operator is probably more important than the equipment. BUT, having said that, can I suggest you check with Fuller “Sonny” Jones . Read his story nd then drop him an e-mail. He has studied the technicalities of PBT (Proton Beam Therapy) from an engineers point of view – as well as a Pca man’s.
2. I noticed some centers do not use the "balloon". What's up with that? I know it is supposed to protect the rectum. But if others don't use it, it sure would be nice! Again men like Sonny will be able to give you a detailed response. My understanding is that some institutions use the balloon to stabilise the gland to ensure that bowel and/or bladder pressure do not move the gland away from the designated aiming points. Other institutions use implanted fiducials to aim the beams using MRI scans in real time.
3. Once and for all, is the 10 year survival rate with protons as good as surgery? Seems like there are not any truly unbiased studies that compare them. There are no good independent studies that can be used to make precise comparisons. BUT, even if there were they wouldn’t be of any precise use because there are so many variances in the disease itself and the physiology of the men with the disease. AND, the 10 year survival for a man with your diagnosis is unlikely to differ if you choose any therapy or option from AS (Active Surveillance) to HIFU (High Intensity Focused Ultrasound). Very few men with your diagnosis will die from Pca in 10 years – although they may well die from some other illness, disease or accident.
4. I read somewhere that initially surgery causes ED and incontinence, but radiation tends to cause ED later. Is that true, and if so, does that include proton radiation? There are no good studies that demonstrate these beliefs adequately. There is no doubt that broadly speaking, surgical side effects are immediate and may improve: radiation side effects may arise later. The supporters of PBT will argue very strongly that the incidence of side effects from PBT is lower than that from photon beam radiation. But there are no good studies to prove these views. The very few studies that have been done tend to show similar side effect profiles.
5. Blue Cross of Miss. denied my coverage for proton treatment. The top man went to Med School with my urologist, and told him an appeal would be a waste of time, as he would deny it anyway. He told my urologist that their internal studies determined proton was no better than photon. Thus, they won't pay. Don't think it has anything to do with the price do you? I do think there is a huge argument within the medical community about all these treatments. I don’t think price is the real problem because large insurers can negotiate prices well down on the figures you mention below. Again I’d suggest yu contact some PBT veterans who may give you some good advice on how you might persuade an insurer to cough up – Sonny runs a PBT specific site at Protons for Prostate Cancer
6. I plan to go to Loma Linda, as I am having to pay the $73,000 myself. I checked the Florida center($136,000) and MD Andersons($180,000), and they were not even close. Does anyone know if any of the other centers are close the the Loma Linda price? For guys like me with no insurance, we're lucky to have Loma Linda. I have been intrigued by the costing policies in the US. I have been told that Loma Linda will charge less than the figure you have quoted if you can demonstrate sufficient reasons for them to do so – hardship, no insurance. If you go to the Treatment Choices page and go to the Proton Beam you’ll see a link to a Korean institution that charges about $54,000.
7. All the guys here go to Birmingham, AL to Dr. Scott Tulley. He is apparently a wonderful surgeon, and has done around 5,000 robotically according to their website. We are lucky to have him here. Even so, I talked to some friends who had the surgery. Seems like about half do well, and half struggle with the side effects. All my friends say I should have the surgery. But I'm pretty well set on proton after reading till I'm cross-eyed! Very few people here know anything about proton, including apparently the doctors. I talked to a local radiation oncologist, and he says proton is pure smoke, and that photons are just as good, and more exact. To his credit, however, he recommended surgery, not radiation as you would think. He said that if the surgery fails, i would have a "lifeboat" with radiation. So, to his credit, he did not recommend his own treatment as so many do. Well, you’ve summed up pretty well the state of play regarding surgery and radiation and proton v photon. Is there a difference – who knows? Everyone will quote their favourite study to support their position – or the outcome of a man they know or….. Read all the stories on the site and you’ll find the whole range of outcomes.
Sorry if I asked WAY too much! No worries – the only stupid question is the one not asked, but here’s one for you – what are you not even condiering AS (Active Surveillance)? Read what long time Pca activist and author Donna Pogliano had to say to a man some years ago before there was any support for AS or Watchful Waiting as it was called then. DONNA POGLIANO'S ADVICE TO THE NEWLY DIAGNOSED
Good luck – and keep asking questions, here, there and everywhere. Gradually the mists will clear and you’ll be able to decide what choice suits YOU.
Sam,
I researched Proton therapy while researching my best treatment options. (I live very close to Loma Linda and it would have been convenient). The only two comparison studies I have run across are the ACER 2009 report and the Prostate Cancer Study Group 2009. Both studies showed no advantage to Proton vs Photon in effectivenesss or Quality of life. The costs of Proton were the main disadvantage as was its effectiveness for the higher grade cancers. For a low grade cancer it will work very well, but so will every other treatment including doing nothing. From what I have gathered Proton was the radiation of choice for PC in the 1990s, but now the technology of providing higher doses at greater accuracy have moved to to the newer image guide photon. My own take is that proton is very effective for small tumors in hard to reach places such as the brain and neck where pinpoint accurracy is critical. For large irregular surfaces such as a prostate it has some issues.
JohnT
Sam:
You will find additional perspective on proton therapy in my ongoing journal; see http://protondon.blogspot.com/
After doing so if you have any questions ,please let me know.
Regards Don O.
Hi Sam, I had a prostatectomy 18 months ago. The surgery went fine but they did find some cancer in the surrounding fatty area. My lymph nodes, seminole vessels and margins were clear. PSA after surgery was undetectable. Normal urination a month after surgery and now 99% as good as before. Some ED problems but slowly getting better. Surgeon did say because cancer was outside of prostate damage to nerves could lesson chances of full ED recovery. Now my PSA is rising and I am learning a lot more. It is true after surgery, radiation is an option but you are hoping that the cancer is confined to the prostate bed whereas radiation as a primary treatment it is easier to target. I think now they use 3 dimensional radiation which is even better. With radiation as primary treatment I heard they could not go in after a do a nerve sparing operation. Now I am hearing that it is possible.
Looking back for me I feel radiation would have been better, but biopsy did point to confined cancer. If the cancer was confined I would have felt very good with my decision to have surgery. It is a tough decision with no clear answer. Johns Hopkins has some information on picking where to go for radiation. You can look it up or if you can't find it I can let you know what they advise. Good luck
and it sounds like your diagnoses is very curable.
Hi Sam,
I've just finished proton therapy at UFPTI three weeks ago today. You don't mention your age, but two years ago I was 66 when diagnosed with GS6, 2 cores positive with <10% each core. After doing my research I felt AS would be my best choice. I too heard that the aggressiveness of your tumor (GS6, GS8, etc) was a more accurate indicator of successful treatment than the specific treatment chosen. About six months ago my AS tests revealed my GS6 tumor was really a GS8 tumor so I sought treatment.
It is true there is a lack of good comparision study results, but that might be changing. While I was down at UFPTI, they were pulling together some of the stats from their first 5 years of treatment (UFPTI started treating in 2006). I was told that they plan to be publishing their results sometime this year, but the numbers they were quoting were quite remarkable, much better than any other treatment results I have seen.
The vast majority (from my observation) of the patients at UFPTI had low (GS6) or intermediate (GS7) tumors. Because mine was a aggressive tumor (GS8-reviewed by Oppenhiemer labs) they offered me a special clinical trial that combined low dose chemo in conjunction with your daily radiation, followed by 6 months of hormone post treatment. Each patient's therapy is very much customized to each patient's type and location of tumor.
A couple of asides, UFPTI normally treats a different side each day, but I met two guys down there who got a smaller dose on EACH side--EACH day. That's all part of customizing your treatment. Also in 2006 UFPTI began by using balloons. After a couple of years they switched to just saline, but they found the saline did not immobilize the prostate to the degree they wanted and so now have switched back to the balloons (which I had). Also I was told Loma Linda didn't use "gold markers" to pin-point the prostate as UFPTI does.
You can talk to Fuller Jones as I did or go down to UFPTI (or some other proton center) for their one day "consultation visit" before you make up your mind.
At 68 Medicare picked up my tab, but I would have preferred to stay on AS if my PCa remained a slowing growing GS6. If you are only a few years short of Medicare, you might consider staying on AS until you can get Medicare. (I'm willing to bet Medicare doesn't pay "list price" regardless of what they might say.)
Good Luck and feel free to contact me with any questions.
