Recently diagnosed with prostate cancer.

Kongo

CThughes said:

Mistakes
Man, the more I read on hear the more I wonder if I made a mistake going with RP. So far incontenance has not been a problem, and I don't know about ED really, my fiancé left me right after the surgery, and confidence is a major thing now. But my urologist felt like my young age, 53, and evidently rapidly rising PSA from 4 to 12.something in a little under 6 months warranted removal after the positive biopsy. I'm thinking I should asked a lot more questions and done a lot more research. I really trusted my doctor as he literally saved my life. I had a kidney stone while out of town working and the hospital ther did some kind of scan to determine it was a kidney stone. They said that's what it was, go home and if you don't pass it in a couple of days, go see your urologist.

Well I didn't pass it right away, so I went on in and he said no big deal, it could take a week. But he went ahead and called the other hospital, got my file, and found where they had noted a shadow in my kidney. But they didn't tell me anything about it, ask me for my doctors name so they could send him the file, or anything. Well it turned out to RCC and they caught it before it metastasized and I seem to be fine with one kidney. But if hadn't been on top of things I was screwed. So mistrusted him when he recommended ssurgery. Now the more I read the more I wonder if that was a mistake.

Don't Beat Yourself Up
CT,

I wouldn't beat yourself up on this decision. There's nothing you can do about it anyway so press on. As your doctor told you, younger men tend to do well with surgery and most recover continence and achieve the ability to have sexual relations. None of us are going to perform in bed like we did when we were in our 20s but that's going to happen whether or not we have prostate cancer.

It sounds like you have a good doctor and I am sure there is a wonderful, understanding woman just around the corner waiting for you.

Best,

K

Swingshiftworker

S103462 said:

Thanks for all the information.

That article mentions “…the need for accuracy when delivering very high daily doses using SBRT is essential.” The radiology oncologist (RO) I saw yesterday indicated that the 5 CK treatments are very high radiation dosages and that if anything goes wrong at those high levels, it goes very, very wrong; and that the 39 treatments of IMRT was not as high dose (but, many more treatments). He also said that both IMRT and CK track for prostate motion and adjust for it. (Again, I was prompting him about all possible scenarios. Maybe too much information is not necessarily better?)

Anyway, great reading material about CK. It’ll give me a few more questions to ask the CK doctor when I see him next.

The various blogs I’ve read related to prostate cancer as well as comments from my urologist and the RO mention that once treatment (whatever type) is done, that my outlook is good – perhaps 15+ years. That doesn’t sound very good – since I’m 56 right now – I was hoping for way more than 71 years old. (But, we’re only promised three-score and 10, right?) Is that simply them being conservative, is that all the data supports, or is that really all this buys me?

Again, thanks.

CK Is VERY Precise
You're welcome for the info on CK.

CK is based on a high series of dosages and designed to emulate the delivery of radiation via HDR BT (high does rate brachytherapy)

http://www.cyberknife.com/uploadedFiles/For_Your_Doctor/500345 B HDR Whitepaper.pdf

and the precision needed to properly control the delivery is built into the technology.

CK is, in fact, currently offers the MOST precise method of delivering radiation to the treatment site. SUB millimeter accuracy is claimed -- which beats any other method of treatment out there -- and the technology is also able to adjust for both body and ORGAN movement during treatment (which minimizes the possibility of collateral tissue damage to the bladder, rectum and urethra which can result in ED, incontinence and other problems). This level of precision is simply unavailable with any other method of radiation treatment currently out there, including BT (LDR or HDR), IMRT, IGRT or 3DCRT.

When I received my CK treatments, they actually paused the radiation delivery one day because they could "see" a gas bubble moving through my colon which was causing the prostate to move. You really can't get any more precise than that!!!

I have had NO side effects whatsoever following treatment -- NO ED and NO incontinence, nor any other problems (such as rectal bleeding) commonly reported following other radiation treatments. Others here have reported the same good results and even been post-PSA results than I have.

Of course, I'm biased but I think you can rest assured in the precision of radiation delivery offered by CK.

As for the long term expectations for treatment, there haven't been many studies beyond 10-15 years for anything, except perhaps surgery. Things are changing rapidly in the treatment of cancer and you really can't wait until the "long term" data is in. All you can do is make the best assessment of the currently available technologies and decide which offers you to best chance of a cure NOW (not later) because you have PCa NOW.

I chose CK because the 5 year data (and anecdotal information) available convinced me that it offered me as good a chance of surviving the cancer as any other method of treatment currently available (including surgery) without the significant risk of ED and incontinence that commonly accompanies surgery and the possible risk of ED, incontinence and collateral tissue damage also associated w/LDR BT (low dose rate brachytherapy). Surgery and LDR BT were the only other choices available to me at the time.

I chose CK because it offered me that same probability of a "cure" while also offering me the greatest probability of maintaining my quality of life. So far, that choice has proven to be the right one for me.

I hope it works out as well for you!

Kongo

S103462 said:

Thanks for all the information.

That article mentions “…the need for accuracy when delivering very high daily doses using SBRT is essential.” The radiology oncologist (RO) I saw yesterday indicated that the 5 CK treatments are very high radiation dosages and that if anything goes wrong at those high levels, it goes very, very wrong; and that the 39 treatments of IMRT was not as high dose (but, many more treatments). He also said that both IMRT and CK track for prostate motion and adjust for it. (Again, I was prompting him about all possible scenarios. Maybe too much information is not necessarily better?)

Anyway, great reading material about CK. It’ll give me a few more questions to ask the CK doctor when I see him next.

The various blogs I’ve read related to prostate cancer as well as comments from my urologist and the RO mention that once treatment (whatever type) is done, that my outlook is good – perhaps 15+ years. That doesn’t sound very good – since I’m 56 right now – I was hoping for way more than 71 years old. (But, we’re only promised three-score and 10, right?) Is that simply them being conservative, is that all the data supports, or is that really all this buys me?

Again, thanks.

CK
S,

Swing is giving you some great information. I too had CK two years ago and have had no side effects at all and PSA continues to drop.

The radiation warnings are true for any type of radiation. If they screw it up, you're screwed. Just like if the surgeon sneezes in the middle of doing your nerve sparing you're not ever going to get laid again.

All of these treatments have inherent risk. But you have to keep in in perspective. You could note that if the airplane engines quit at 30,000 feet you have a big problem but most of us keep on flying anyway.

I follow CK papers, forums, and blogs pretty closely and visit with my radiation specialist every six months. I have never heard of a CK case going bad as you describe.

The radiation is delivered via a linear accelerator on a robotic arm which is controlled by a computer program. There is continual imaging of the prostate so that the arm can adjust to prostate movement in real time as Swing noted. If the prostate moves outside certain parameters the machine shuts down until movement has stabilized. I also had the radiology staff brief me on procedures and back up plans for a power outage, earthquake, and other things so that I understood the built in safeguards. I also had them show me the daily maintenance they perform each day to verify the machine is operating properly.

The radiation plan also has checks and balances in that the dosimetrist, radiologist, and physicist, on the team double check the others work. They also run a modeling and simulation routine based on the 3-D imaging you have to verify the pattern what is supposed to be.

CK does use a higher dose of radiation. There is a major advantage to that and it has to do with the alpha/beta ratio of prostate cancer and its vulnerability to higher dosage rates. The precise tracking system is an evolution of technology over several years that allows SBRT to be used on an organ like the prostate that moves around.

If you consult with a CK center, ask them to show you how the build a radiation plan, and how the system works.

Good luck to you.

K

mrspjd

S103462 said:

Thanks for all the information.

That article mentions “…the need for accuracy when delivering very high daily doses using SBRT is essential.” The radiology oncologist (RO) I saw yesterday indicated that the 5 CK treatments are very high radiation dosages and that if anything goes wrong at those high levels, it goes very, very wrong; and that the 39 treatments of IMRT was not as high dose (but, many more treatments). He also said that both IMRT and CK track for prostate motion and adjust for it. (Again, I was prompting him about all possible scenarios. Maybe too much information is not necessarily better?)

Anyway, great reading material about CK. It’ll give me a few more questions to ask the CK doctor when I see him next.

The various blogs I’ve read related to prostate cancer as well as comments from my urologist and the RO mention that once treatment (whatever type) is done, that my outlook is good – perhaps 15+ years. That doesn’t sound very good – since I’m 56 right now – I was hoping for way more than 71 years old. (But, we’re only promised three-score and 10, right?) Is that simply them being conservative, is that all the data supports, or is that really all this buys me?

Again, thanks.

Kudos
S1,

Welcome to the PCa forum. I admire the independent research you’re doing and the knowledge and level of questions you bring to this forum so soon after your PCa diagnosis. You seem to have a good understanding of the many complex issues surrounding PCa. Kudos to you for that.

There is published data to support the information that your radiation oncologist (RO) gave you on June 6th re CK (CyberKnife is the manufacturer’s name for one brand of SBRT delivery technology). Last year, the respected American Society for Radiation Oncology (ASTRO) released a summary paper titled “Quality and Safety Considerations in Stereotactic Radiosurgery (SRS) and Stereotactic Body Radiation (SBRT) Therapy.” The document was commissioned by ASTRO and approved by their Board of Directors to address patient safety. ASTRO’s executive summary paper states: “Given that very high-dose fractions of radiation are delivered, the margin of error for SRS and SBRT is significantly smaller than that of conventional radiotherapy and therefore special attention and diligence is required. A small error in target localization for any 1 fraction risks under treatment of portions of the tumor by 20% or more, and inadvertent over dosage of adjacent normal tissues could escalate the risk of serious injury to a much greater degree than an equivalent treatment error in a course of radiotherapy where a substantially lower dose per fraction is used [IG/IMRT].” Of course, as with any cancer treatment, the skill & expertise of the treating medical doctor/team are critical. I’ve previously posted about this. If you’d like more info, please LMK.

I don’t know if there is any study data to indicate that PCa in African-American populations is or should be TREATED more aggressively (or differently) than in Caucasian populations—tx decisions are personal and largely dependent on the patient and cancer risk level and clinical Tumor staging. However, according to data from the CDC and Johns Hopkins: “African American men are both more likely to be diagnosed with prostate cancer and to die from prostate cancer than are white men, although the reasons for this are not clear. African-American men have considerably higher incidence rates (234.6 cases per 100,000 African-American men in 2003-2007) than white men (150.4 cases per 100,000 white men in 2003-2007). In the period from 2003 to 2007, mortality rates were 22.8 cases per 100,000 white men, and 54.2 cases per 100,000 African-American men. Some studies found that even when income and education are controlled for, African-Americans have much higher rates than whites. Further studies are examining the impact of a wide variety of potential risk factors, including dietary and other lifestyle differences, occupational exposures, and hormonal and genetic differences.” IMHO, you are wise to be taking a very proactive approach to learning as much as possible about your dx.

Although you indicated there is no history of PCa in your family, you mentioned a history of uterine and ovarian cancer for female family members. Prostate, breast & ovarian cancers are all hormone sensitive cancers. I do not wish to alarm you, but it’s important for you to know that a recent study from the UK indicated that men who carry the mutated BRCA1 gene have a four times greater chance of developing prostate cancer than other males. The mutated BRCA1 is found in people with a family history of not only breast cancer, but ovarian cancer as well. MEN with the mutated BRCA1 gene are also more susceptible to the very aggressive form of prostate cancer. Only genetic testing followed by genetic counseling can determine if you or other family members are carriers of this gene. I am not a medical doctor, so please check with a knowledgeable PCa oncologist about this. Also, as others have stated, I strongly recommend that you obtain a 2nd opinion analysis of your biopsy core samples from a pathology lab that specializes in reviewing PCa specimens, such as Johns-Hopkins, prior to making any tx decisions. The info in the 2nd opinion path lab report will assist you in better evaluating your tx options and may even be helpful in determining if add’l diagnostic testing may be indicated. It did for my husband.

With your early dx, I believe your chances for a successful treatment outcome are excellent. I have no doubt that your continuing research, thoughtful questions and multiple medical specialty consults will lead you to a tx decision that will be right for you. Good luck and best wishes to you and your wife.

mrs pjd
wife of a T3 PCa Survivor

S103462

mrspjd said:

Kudos
S1,

Welcome to the PCa forum. I admire the independent research you’re doing and the knowledge and level of questions you bring to this forum so soon after your PCa diagnosis. You seem to have a good understanding of the many complex issues surrounding PCa. Kudos to you for that.

There is published data to support the information that your radiation oncologist (RO) gave you on June 6th re CK (CyberKnife is the manufacturer’s name for one brand of SBRT delivery technology). Last year, the respected American Society for Radiation Oncology (ASTRO) released a summary paper titled “Quality and Safety Considerations in Stereotactic Radiosurgery (SRS) and Stereotactic Body Radiation (SBRT) Therapy.” The document was commissioned by ASTRO and approved by their Board of Directors to address patient safety. ASTRO’s executive summary paper states: “Given that very high-dose fractions of radiation are delivered, the margin of error for SRS and SBRT is significantly smaller than that of conventional radiotherapy and therefore special attention and diligence is required. A small error in target localization for any 1 fraction risks under treatment of portions of the tumor by 20% or more, and inadvertent over dosage of adjacent normal tissues could escalate the risk of serious injury to a much greater degree than an equivalent treatment error in a course of radiotherapy where a substantially lower dose per fraction is used [IG/IMRT].” Of course, as with any cancer treatment, the skill & expertise of the treating medical doctor/team are critical. I’ve previously posted about this. If you’d like more info, please LMK.

I don’t know if there is any study data to indicate that PCa in African-American populations is or should be TREATED more aggressively (or differently) than in Caucasian populations—tx decisions are personal and largely dependent on the patient and cancer risk level and clinical Tumor staging. However, according to data from the CDC and Johns Hopkins: “African American men are both more likely to be diagnosed with prostate cancer and to die from prostate cancer than are white men, although the reasons for this are not clear. African-American men have considerably higher incidence rates (234.6 cases per 100,000 African-American men in 2003-2007) than white men (150.4 cases per 100,000 white men in 2003-2007). In the period from 2003 to 2007, mortality rates were 22.8 cases per 100,000 white men, and 54.2 cases per 100,000 African-American men. Some studies found that even when income and education are controlled for, African-Americans have much higher rates than whites. Further studies are examining the impact of a wide variety of potential risk factors, including dietary and other lifestyle differences, occupational exposures, and hormonal and genetic differences.” IMHO, you are wise to be taking a very proactive approach to learning as much as possible about your dx.

Although you indicated there is no history of PCa in your family, you mentioned a history of uterine and ovarian cancer for female family members. Prostate, breast & ovarian cancers are all hormone sensitive cancers. I do not wish to alarm you, but it’s important for you to know that a recent study from the UK indicated that men who carry the mutated BRCA1 gene have a four times greater chance of developing prostate cancer than other males. The mutated BRCA1 is found in people with a family history of not only breast cancer, but ovarian cancer as well. MEN with the mutated BRCA1 gene are also more susceptible to the very aggressive form of prostate cancer. Only genetic testing followed by genetic counseling can determine if you or other family members are carriers of this gene. I am not a medical doctor, so please check with a knowledgeable PCa oncologist about this. Also, as others have stated, I strongly recommend that you obtain a 2nd opinion analysis of your biopsy core samples from a pathology lab that specializes in reviewing PCa specimens, such as Johns-Hopkins, prior to making any tx decisions. The info in the 2nd opinion path lab report will assist you in better evaluating your tx options and may even be helpful in determining if add’l diagnostic testing may be indicated. It did for my husband.

With your early dx, I believe your chances for a successful treatment outcome are excellent. I have no doubt that your continuing research, thoughtful questions and multiple medical specialty consults will lead you to a tx decision that will be right for you. Good luck and best wishes to you and your wife.

mrs pjd
wife of a T3 PCa Survivor

Spent time yesterday speaking with the doctor at the local CyberKnife (CK) facility. Talked at length about my diagnosis, treatment, the CK process, outcomes, side-effects, short- and long-term expectations, his experience, and results that they've seen. We talked about my concerns, how I heard about CK, why I was considering it -- a real thorough discussion from all angles.

He did recommend that I get a 2nd opinion of the biopsy pathology, and recommended Johns Hopkins, and recommended the same name (Epstein) that you and others have mentioned.

He did let me know that my insurance carrier (Anthem) would not cover the CK treatment -- that they would cover everything else -- scans, MRI, whatever -- all the way up to and after the CK treatment, but not the CK itself. He indicated that the cost of the CK would be somewhere between $8K - $10K. My wife says to not let that impact the decision -- if it will provide the outcome that I'm looking for, then go for it. We'll see.

Swingshiftworker

S103462 said:

Spent time yesterday speaking with the doctor at the local CyberKnife (CK) facility. Talked at length about my diagnosis, treatment, the CK process, outcomes, side-effects, short- and long-term expectations, his experience, and results that they've seen. We talked about my concerns, how I heard about CK, why I was considering it -- a real thorough discussion from all angles.

He did recommend that I get a 2nd opinion of the biopsy pathology, and recommended Johns Hopkins, and recommended the same name (Epstein) that you and others have mentioned.

He did let me know that my insurance carrier (Anthem) would not cover the CK treatment -- that they would cover everything else -- scans, MRI, whatever -- all the way up to and after the CK treatment, but not the CK itself. He indicated that the cost of the CK would be somewhere between $8K - $10K. My wife says to not let that impact the decision -- if it will provide the outcome that I'm looking for, then go for it. We'll see.

Only $10K for CK?
If they are actually offering CK treatment for only $10K, that's an incredible deal!!!

Are you sure that for all 4-5 treatments or just 1? Reason I ask is that I was quoted $70k for insurance billed and $60K for self-pay for 4 CK treatments) by UCSF where I received CK. Fortunately, Blue Shield covered it and I didn't have to pay anything.

If you're only talking $10K, I agree w/your wife that you should not let the cost affect your decision about whether to go w/CK or not. However, if it's closer to what I was quoted, you'll obviously have to take your finances into account.

Let us know what you finally decide. Good luck!

mrspjd

Swingshiftworker said:

Only $10K for CK?
If they are actually offering CK treatment for only $10K, that's an incredible deal!!!

Are you sure that for all 4-5 treatments or just 1? Reason I ask is that I was quoted $70k for insurance billed and $60K for self-pay for 4 CK treatments) by UCSF where I received CK. Fortunately, Blue Shield covered it and I didn't have to pay anything.

If you're only talking $10K, I agree w/your wife that you should not let the cost affect your decision about whether to go w/CK or not. However, if it's closer to what I was quoted, you'll obviously have to take your finances into account.

Let us know what you finally decide. Good luck!

"we'll see" & in the meantime...
S1

Once you obtain the 2nd opinion path lab report on your biopsy samples and copies of all your recent medical tests, records and reports, I would encourage you to consider scheduling a consult with an oncologist who specializes in PCa.  S/he may be able to provide an independent assessment of your case after reviewing your medical records/history and risk factors (such as family history of hormone sensitive cancer, etc) & assist you in evaluating tx options with attention to personal lifestyle & QoL priorities. 

In the meantime, you may also wish to consider attending a well established face to face PCa networking group mtg in your area that welcomes wives & SO's.   My husband & I found these resources very helpful during the "due diligence" portion of our journey (and still do 2 1/2 yrs later).   Keep researching and asking questions!