Surgeon recommendation
Comments
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Dave
I listed a study in one of your other threads, that will be of interest to you0 -
LOOK INTO proton treatments
LOOK INTO proton treatments ... no surgeon will most likely mention this option BUT it exists //9 places in U.S that do it w/ more coming ..I just finished my treatments 3 weeks ago ...felt nothing during the process , maintained daily routines ...lost no weight , kept my hair ... no pads ..no worries /// New Proton Center opened in Chicago area this past Oct. ( Warrenville Ill .) there are others BUT GET LOOKING INTO THIS ...have spoken to several men who said they HAD wished they had heard about PROTON THERAPY instead of what they had selected ... have read where Mayo Clinic is building a proton center ?? won't be open til 2015 ??? my thoughts are that if Mayo is looking into this it must be good ...0 -
I when to Loma Linda U forSilverstreak said:LOOK INTO proton treatments
LOOK INTO proton treatments ... no surgeon will most likely mention this option BUT it exists //9 places in U.S that do it w/ more coming ..I just finished my treatments 3 weeks ago ...felt nothing during the process , maintained daily routines ...lost no weight , kept my hair ... no pads ..no worries /// New Proton Center opened in Chicago area this past Oct. ( Warrenville Ill .) there are others BUT GET LOOKING INTO THIS ...have spoken to several men who said they HAD wished they had heard about PROTON THERAPY instead of what they had selected ... have read where Mayo Clinic is building a proton center ?? won't be open til 2015 ??? my thoughts are that if Mayo is looking into this it must be good ...
I went to Loma Linda U for proton therapy, but it was follow up after surgery, and I received mostly radiaiton. I was so envious of those guys going through the straight proton treatment- their lives were so much better than mine.
I hate what surgery has done to me, but more specificly, I hate what cancer has done to me. I wish my cancer had been caught earlier and that I had used only the proton therapy for treatment.
unfortunately, there is no 2nd choice in treatment. Once surgery is done, its done.
I agree with you Silverstreak, I don't understand why more men don't consider proton therapy. No surgery, no incontinence, sexual function intact, so much nicer.....
Now I am looking at getting an AUS 800 installed in two weeks. I am so excited.0 -
Proton and insuranceSilverstreak said:LOOK INTO proton treatments
LOOK INTO proton treatments ... no surgeon will most likely mention this option BUT it exists //9 places in U.S that do it w/ more coming ..I just finished my treatments 3 weeks ago ...felt nothing during the process , maintained daily routines ...lost no weight , kept my hair ... no pads ..no worries /// New Proton Center opened in Chicago area this past Oct. ( Warrenville Ill .) there are others BUT GET LOOKING INTO THIS ...have spoken to several men who said they HAD wished they had heard about PROTON THERAPY instead of what they had selected ... have read where Mayo Clinic is building a proton center ?? won't be open til 2015 ??? my thoughts are that if Mayo is looking into this it must be good ...
Proton treatments were considered as well as Cyberknife a few months ago. Because I had Kaiser of Colorado, IMRT and DaVinci were my only choices, neither of which sounded good.
The little research I did on Proton reflected an out of pocket cost in the 10's of thousands but I was able to get a discount with Cyberknife plus it was only an hour drive.
I was wondering what type of insurance pays for Proton therapy as I am in a situation where we can switch every year. Thanks0 -
PBT vs. CKJJPhare said:Proton and insurance
Proton treatments were considered as well as Cyberknife a few months ago. Because I had Kaiser of Colorado, IMRT and DaVinci were my only choices, neither of which sounded good.
The little research I did on Proton reflected an out of pocket cost in the 10's of thousands but I was able to get a discount with Cyberknife plus it was only an hour drive.
I was wondering what type of insurance pays for Proton therapy as I am in a situation where we can switch every year. Thanks
JJ: Are you thinking of switching from CK to PBT just because of the cost?
I don't know what your financial situation is but, if you can afford it, I'd discourage you from switching (and not just because I got CK).
When I inquired, PBT was not covered by CA Blue Cross HMO but CK was. So, that made my choice easy. However, if I had to pay out of pocket, I still would have chosen CK over PBT even though CK was more expensive. I was quoted prices of about $36K for PBT at Loma Linda and $50k for CK at UCSF. Not sure which insurers cover PBT but I'm sure someone here must have some info on it.
Before you switch to PBT (if that's what you're thinking of doing), consider the following:
1) PBT requires 8 weeks or about 40 daily treatments, which requires you to live near the treatment facility and increases your costs. New protocols are reducing the number of treatments to about 8 weeks or 28 daily treatments, which still requires you to live near the treatment facility for an extended time period. CK only requires 4-5 daily treatment that can be completed in a week (or week & 1/2 if you ask for treatments every other day to avoid radiation irritation).
2) You have to be fitted for and placed in a body cast during treatment so that you don't move -- your position and the radiation beam is fixed. This has resulted in some complaints of skin irritation and/or burns where the radiation is focused. The fixed beam may also be the cause of complaints of incontinence following PBT treatment. CK avoids these problems by delivering radiation at many different angles by means of the rotating arm and movable treatment bed which not only adjusts for body movement but organ movement as well.
3) You have to have a balloon inserted and inflated in your butt before each treatment in order to protect your rectum from radiation. This is not required for CK because of the greater precision in radiation delivery provided by the CK arm & bed.
If money is still the more important issue for you, fine. PBT should give you as good a result as CK would; just not with the same level of comfort and convenience.
Whatever you choose to do, I wish you well. Good luck!!!0 -
CK completed and satisfiedSwingshiftworker said:PBT vs. CK
JJ: Are you thinking of switching from CK to PBT just because of the cost?
I don't know what your financial situation is but, if you can afford it, I'd discourage you from switching (and not just because I got CK).
When I inquired, PBT was not covered by CA Blue Cross HMO but CK was. So, that made my choice easy. However, if I had to pay out of pocket, I still would have chosen CK over PBT even though CK was more expensive. I was quoted prices of about $36K for PBT at Loma Linda and $50k for CK at UCSF. Not sure which insurers cover PBT but I'm sure someone here must have some info on it.
Before you switch to PBT (if that's what you're thinking of doing), consider the following:
1) PBT requires 8 weeks or about 40 daily treatments, which requires you to live near the treatment facility and increases your costs. New protocols are reducing the number of treatments to about 8 weeks or 28 daily treatments, which still requires you to live near the treatment facility for an extended time period. CK only requires 4-5 daily treatment that can be completed in a week (or week & 1/2 if you ask for treatments every other day to avoid radiation irritation).
2) You have to be fitted for and placed in a body cast during treatment so that you don't move -- your position and the radiation beam is fixed. This has resulted in some complaints of skin irritation and/or burns where the radiation is focused. The fixed beam may also be the cause of complaints of incontinence following PBT treatment. CK avoids these problems by delivering radiation at many different angles by means of the rotating arm and movable treatment bed which not only adjusts for body movement but organ movement as well.
3) You have to have a balloon inserted and inflated in your butt before each treatment in order to protect your rectum from radiation. This is not required for CK because of the greater precision in radiation delivery provided by the CK arm & bed.
If money is still the more important issue for you, fine. PBT should give you as good a result as CK would; just not with the same level of comfort and convenience.
Whatever you choose to do, I wish you well. Good luck!!!
Swing:
Thanks for your comments and info. Sorry that I was not more complete in my
question. I completed CK on July 6 (5 sessions over 10 days) and am happy with the outcome (so far) except I was concerned with a long 2 weeks of side effects (urge, burn, frequency). Of the 4 CK places in Colorado, 3 were in the $20-30K range (self-pay) and the other, with the most recent equipment offered me a great discount that I could not refuse. Due to cost and distance, my only options were radiation or daVinci with Kaiser or self-pay Cyberknife. Spending 8 weeks away from home for proton treatments would make things prohibitive even if covered.
I get a lot of questions about how I came to my decision. There are no Proton places near me in Denver but I like to be informed about cost which is a major factor for those like me who will self pay. My former colleagues have the option of switching health plans at the beginning of each year. Often a major factor in one's the choice comes down to what is covered by insurance and is that the best option for the patient. Without the availability of CK at an affordable price, I would have had to hold my nose and go with IMRT or brachy.
As soon as I get my PSA results in another two months, I'll be posting but until that time, I still want to get as informed as I can to educate others.0 -
Treatment options
Dear daveirving:
Given all the knowledge and opinion here, you may be more confused than you were when you inquired in the first place. I am getting ready to start treatment myself and fully understand what you are going through.
All of us are at risk for making an effective decision or an ineffective one, but some of these treatment options have longer histories and documeneted results than others. During my studies, I came upon many people that were quite happy with their treatment choice, but frankly the track records of many of their choices were so short and undocumented that they will not know the full impact of their choice for many years. While several of these options sounded very good (fewer treatments, shorter recovery time, cleaner radiation, etc), I insisted on long-term cure rate and side effect rate data. Not just data, but published data. By the way, robotic surgery has a relatively short history as does PBT and CK. Substantial amounts of long-term documentation does not exist.
I needed 10 year cure rate data and sought 15 year data in making my decision. It was out there for review and reference. It seemed wise to play the percentages even though my odds of getting PCa at my age were very low to begin with. So many of these newer options looked so good, and they probably are, but in the end I just couldn't make a choice without long-term documentation and third party scrutiny.
God Bless You and best wishes for a complete cure.
robert10 -
Individual choicesrobert1 said:Treatment options
Dear daveirving:
Given all the knowledge and opinion here, you may be more confused than you were when you inquired in the first place. I am getting ready to start treatment myself and fully understand what you are going through.
All of us are at risk for making an effective decision or an ineffective one, but some of these treatment options have longer histories and documeneted results than others. During my studies, I came upon many people that were quite happy with their treatment choice, but frankly the track records of many of their choices were so short and undocumented that they will not know the full impact of their choice for many years. While several of these options sounded very good (fewer treatments, shorter recovery time, cleaner radiation, etc), I insisted on long-term cure rate and side effect rate data. Not just data, but published data. By the way, robotic surgery has a relatively short history as does PBT and CK. Substantial amounts of long-term documentation does not exist.
I needed 10 year cure rate data and sought 15 year data in making my decision. It was out there for review and reference. It seemed wise to play the percentages even though my odds of getting PCa at my age were very low to begin with. So many of these newer options looked so good, and they probably are, but in the end I just couldn't make a choice without long-term documentation and third party scrutiny.
God Bless You and best wishes for a complete cure.
robert1
Robert, I understand your desire for a long track record. We all want to have as much confidence in our individual treatment choices. The flip side to looking at such long records is that you end up choosing 10 or 15 year old technology. Given the pace of advancements in a variety of treatments, you could end up ruling out a treatment that minimizes your side effects while delivering a cure. But at the end of the day we all have to make our individual choices.
Good luck to you
K0 -
Treatment improvementsKongo said:Individual choices
Robert, I understand your desire for a long track record. We all want to have as much confidence in our individual treatment choices. The flip side to looking at such long records is that you end up choosing 10 or 15 year old technology. Given the pace of advancements in a variety of treatments, you could end up ruling out a treatment that minimizes your side effects while delivering a cure. But at the end of the day we all have to make our individual choices.
Good luck to you
K
You are right Kongo.
I am just one of those guys that requires a lot of longer-term evidence before making such a huge decision. When making such big decisions, I like to factor in "not so great" possibilities. For example: If I choose a treatment option that is well documneted as highly successful over the long-term and do not succeed, I am less likley to ever look back with regret. If I choose one of the newer and very promising treatments that is not well documneted over the long-term and fail, I may have deep regrets. This is very important to me. While I certainly do not expect the worst case, my personality requires me to consider it.
Cure rates, side effects, peace-of-mind, costs, convenience.....what a balancing act! You are right, it is certainly one of the most individual health choices.
Thank you.
robert10 -
Kongo said:
Individual choices
Robert, I understand your desire for a long track record. We all want to have as much confidence in our individual treatment choices. The flip side to looking at such long records is that you end up choosing 10 or 15 year old technology. Given the pace of advancements in a variety of treatments, you could end up ruling out a treatment that minimizes your side effects while delivering a cure. But at the end of the day we all have to make our individual choices.
Good luck to you
K
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Davinci vs new treatmentrobert1 said:Treatment improvements
You are right Kongo.
I am just one of those guys that requires a lot of longer-term evidence before making such a huge decision. When making such big decisions, I like to factor in "not so great" possibilities. For example: If I choose a treatment option that is well documneted as highly successful over the long-term and do not succeed, I am less likley to ever look back with regret. If I choose one of the newer and very promising treatments that is not well documneted over the long-term and fail, I may have deep regrets. This is very important to me. While I certainly do not expect the worst case, my personality requires me to consider it.
Cure rates, side effects, peace-of-mind, costs, convenience.....what a balancing act! You are right, it is certainly one of the most individual health choices.
Thank you.
robert1
I was advised on the same mindset at robert. Unless you are in life threatening situation or have exhausted time tested approach, go with lower risk and proven option. 1 year ago I evaluated HIFU and CK option and chose Davinci. Prostrate removal has been therefor 10s of years with urolgists honed from the past. Davinci is another way to do the same. The beast is out - that I can understand that and be happy of. 1 year later no incontinence and health issue.90% pre surgery erection, and 120% with the blue pill.
Again its all a personal choice -0 -
Dr Igor Frank
I read your post and wanted to know if you decided to do the surgery with Dr Igor Frank. I'm in the same situation needing to do the same surgery and I'm undecided as to whom I should use.
If you ended up having the surgery with Dr Frank please tell me your experience.
I hope everything went fine
Regards
Alfred
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