New diagnosis, looking at options

wboaz said:

A bit more info
According to my doc I am one of the "overdiagnosed". My cancer was found only because my PSA went from a 1.8 to a 4. My first set of cores only came up with High Grade PIN. Second set came up with 1 core (out of 12) testing positive and it was less than 20%.

My doctor said if it was him he would probably just just to the watchful waiting thing but he understood my nervousnessness as I have been through stage 4 hell before. I have some concerns about any radiation and don't much like the nember of side effects with the surgery. I'm interested in hearing what radiation methods had the least bad side effects and also if maybe I should wait for some new drugs to either get a longer track record or be approved.

Also, if anyone has an opinion on who I should get a second opinion from in the Portland Oregon area I would appreciate it.

bdhilton said:

?
I am happy you believe that you selected the best treatment…but your side effects come after a year or two so please do not pretend that your treatment is the best or is without side effects as time will tell …all the best

Swingshiftworker said:

CyberKnife Has The Fewest Side Effects
IMHO CyberKnife is currently the best method of radiation treatment with the fewest side effects -- virtually none -- for early stage PCa patients (Gleason 6; Stage T1c; PSA less than 10 or so).

Kongo, ViperFred and I (who are all members of this forum) have received this treatment. ViperFred received his treatment over 2 years ago (May 2008)and reports a PSA nadir of 0.034 as of August 5, 2010 and no ED or urinary side effects. That's incredible! Kongo had his treatment about 3 months ago and reports no side effects since then. I just had my last CK treatment (out of 4) at UCSF Medical Center yesterday and have had no side effects since the 1st treatment on 9/15. Reports I received from other CK patients who were treated 2-3 years ago at UCSF were similar to those reported by ViperFred. However, one of the UCSF patients that I spoke w/by email had some urinary irritation about 18 months after treatment, which is not uncommon with radiation treatment, that resolved itself and did not require any medical intervention.

If you're not familiar w/CK, you can find information about it on the manufacturer's site where there is a open forum supported by CK physicians who actively respond to messages from patients about CK. Here's a direct link to the forum: http://cyberknife.com/Forum.aspx?g=topics&f=2586.

You can also find some interesting pro-CK info on the following site as well: http://www.iprostatecancer.com. The CBS newsclip on thid site reporting that Blue Shield CA refused payment for CK is now dated, because BS CA is paying for my CK treatment and has issued a recent policy statement approving CK for treating prostate and other cancers. There are also a number of abstracts of medical studies posted on this site that speak to the limited side effects of CK.

Kongo can give the the technical details better than I, but basically treatment w/CK involves only 4 (9.5 grays each; total 38 grays) or 5 treatments (7 or 7.25 grays for a total of 35 or 37.5 grays) -- either daily or every other day -- using a computerized SBRT (stereotactic body radiation therapy) robotic device that can deliver externallly applied radiation in a very precise pattern that takes into account body and organ movement w/o the need for protective devices or body casts as are used by other methods.

The total amount of radiation used w/CK is much less than used in other radiation methods (eg., IMRT or EBRT) due to the precision of radiation delivery and the amount of radiation delivered can be varied depending upon the direction of delivery in order to minimize collateral tissue damage (including but not limited) to the rectum, urethra and vascular bulb which (if not properly controlled) can cause rectal bleeding and damage, urinary strictures and incontinence and/or ED (respectively) so commonly experienced with other treatments.

FYI, you can wear your street clothes and listen to your iPod while receiving treatment on the CK table. The only thing they do is wrap your elbows loosely w/a velcro strap to keep your arms from moving into the path of the radiation beam BUT you can still lift your arms and scratch your nose if you need to. How cool is that?

You should also look into Proton Beam Therapy, which also has reportedly few side effects, but I think that CK trumps PBT because it requires 40-45 treatments over 8-9 weeks (as opposed to only 4-5 treatments over 1-2 weeks for CK), which requires you to live near the PBT treatment site for a least 2 months, requires the fitting of a body cast so that you don't move during the treatment (since PBT does not adjust for body movement) and the insertion of an air filled balloon in your rectum prior to each treatment (not required for CK).

BTW, I got a 2nd opinion on my biopsy by Dr. Jonathan I. Epstein at Johns Hopkins University, who is considered one of the foremost experts in prostate biopsy analysis in this country. Cost was $225 and turn around was less than a week.

Good luck in your search for the treatment method that works best for you!

Kongo said:

Choices
Wayne:

Many would say that AS certainly is a viable course of action in your case of low risk cancer which could very well be considerd indolent. Another statistic you may want to look at is the PSA density which is a measure of PSA divided by prostate volume. They should have calculated your prostate volume when they did the autopsy. A PSA density less than 0.15, as I recall, is a strong indicator of indolent cancer.

The only thing about someone on AS at your age is that since prostate cancer in an inherently metatastic disease, given enough time it will grow and spread, even if slowly. Given the long life expectancy you have you need to carefully weigh the potential risks associated with waiting for treatment. Most indicators are that if you are diligent with your AS you can detect a change early enough to seek treatment without risk. There is the anxiety issue, but frankly, I think if you are well educated on the prospects of continued cancer growth after any treatment, you are never going to be completely free from anxiety.

Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early. Only time will tell.

As Swing indicated, CyberKnife is an emerging treatment some of us have chosen that has early indications of long term cancer free survival with minimum side effects for urinary discomfort, rectal issues, and erectile function preservation. Of course, there are also some who develop side effects and you already know how it feels to be on the losing end of long odds. HDR Brachytherapy, is a more established treatment that has the best results with long term (>10 year) sustaining data. CyberKnife mimics HDR Brachytherapy in its dosage application and the success and side effect curves perfectly match those of HDR brachytherapy for as long as there is CK data...about 4.5 years in the oldest cases. In addition to CyberKnife, SBRT is also administered by other systems such as the Varian RapidArc system.

Besides CK, IMRT which you already seem to have some degree of aprehension about, is probably the next most used radiation treatment. Although the dosage plans are similar, a big difference between IMRT and CK is that IMRT only adjusts for the position of the prostate on a daily (once a session) basis. CK on the other hand tracks the movement of the prostate in real time and adjusts its position to compensate for frequent prostate movement caused by bladder filling, gas in the colon, or respiratory effects. With its real time adjustment, CK minimizes any radiation to surrounding tissue or organ and thus has a lower incidence of urinary or bowel toxicity.

Seed implants are quite popular and also effective but have been associated with higher rates of toxicity with the bowel and higher incontinence and ED rates.

Proton therapy is popular with many although some studies have shown it is no more effective than IMRT and takes about as long to administer.

Can't help you with who you might consult with in Oregon but I would recommend you take the time to consult with someone who is a specialist in all of the above treatment methodologies to get a first hand perspective of what the doctor who would treat you considers to be the pros and cons.

I would also consult with surgeons, many of whom will tell you that a very young man such as yourself has a very good statistical probability of full recovery with little side effects.

MCinNC said:

Kongo,
You said: "Had I
Kongo,

You said: "Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early."

What was your thinking, or what kind of calculations were you doing, when drawing a line based on age between AS and CK? I'm dealing with the same issues with a similar PC history as yours and would be very interested in your thought process.

Thanks.

Mac

MCinNC said:

Please jump in...
Thanks for your comment. I'm 56, shooting for 86, with T1c, Gleason 6, 2.4 PSA, 1 of 12 cores positive - so I understand the thinking.

I guess the follow up is whether you considered doing AS for the short term? Say, monitor things for 5 years if the disease doesn't show signs of progressing... To let more CK data come available for example, or to postpone potential side effects, etc.? Or, was there some thinking that your best chance for that longevity your're seeking is immediate primary treatment, and to wait may lessen the chance of success?

Mac

Swingshiftworker said:

Interesting Paper
Kongo: You're much more plugged into the technical and scientific data on CK than I am.

I chose CK based more on the anecdotal evidence and general reports that I read on the various treatments available than I did on scientific data or studies. However, the article you cited, which apparently summarizes all of the available studies on the effectiveness of CK to date, supports the conclusion that CK is the best available treatment for men w/early stage PCa. The data speaks for itself and there is no need to respond further to BD.

I meant to comment on the increased efficacy of the CK based on the greater precision of the dose distribution, but I didn't have the language to express that until you mentioned BED (biological equivalent dose) which was discussed at length in Katz's article.

I received 4 treatments of 9.5 Gy each, every other day, for a total of 38 Gys. This is on the higher end of the CK treatment dosages. Katz suggests that 5 treatments of 7 Gy each for at total of 35 Gy is optimal dosage. However, BED varies widely based on the alpha/beta (a/b) ratio (cell sensitivity to radiation) used. Katz uses an a/b ratio of 1.5 Gy and a BED of 92 Gy in arriving at his conclusion that 35 Gy is the "optimal" dosage. However, a study at U of Maryland that I just found concludes that the a/b ratio of prostate cells is actually 3.1 Gy +/1 0.5 Gy. See: http://www.ncbi.nlm.nih.gov/pubmed/12504054.

For CK dosages of 38, 36.25 and 35 Gy, respectively, the BED (using a 1.5 Gy a/b ratio) is 125, 96 and 92 Gy BUT, when you use a 3.0 a/b ratio, the BED is 97, 78 and 72 Gy instead. See Table I in Katz's article for the comparative BED data. So, which a/b ratio you use makes a huge difference in computing the BED and I think that the actual BED received is in question. Katz's conclusion that the use of higher dosages over 35 Gy creates greater toxicity risk without significantly greater curative benefit (because "[h]igher doses would be on the flat part of the sigmoid dose response curve (Figure 2) and yield no extra benefit" -- see Katz at page 468) or that "[t]he higher peripheral doses achieved with heterogeneous planning may not be necessary to eradicate prostate cancer cells" (see Katz at page 469) remain to be determined.

Nevertheless, it seems clear that the higher radiation dosage you receive, the greater the risk of tissue damage and complications caused by radiation toxicity (regardless of the type of radiation treatment received -- be it CK, BT, IMRT or EBRT). The 4 x 9.5 Gy CK treatment that I received was based on heterogeneous planning, "which involves using more beams to achieve a heterogeneous (radiation) dose distribution throughout the prostate, simulating an HDR brachytherapy plan. . . . Urethral doses are also lower with CyberKnife heterogeneous treatment than with HDR, suggesting an advantage in minimizing urethral complications. The number of beams necessary to accomplish heterogeneous treatment is 230-318 which leads to longer treatment times of approximately 90 minutes." See, Katz at pg 468. My treatments lasted about 90 minutes, which confirms the use of heterogeneous planning. I also received my 4 treatments every other day (instead of daily), which in the King study (discussed by Katz at pg 466) apparently reduced the incidence of urinary and rectal complications.

So, despite getting a higher radiation dosage, hopefully the mitigating effects of heterogeneous dose distribution and the every other day treatment schedule will mitigate the higher toxicity risks in my case.

Time will tell.

BTW, Kongo: What method of planning and dose distribution did you receive? -- homogeneous or heterogeneous and 7 or 7.25 Gy?

hopeful and optimistic said:

My viewpoint
You have been diagnosed with early stage, low risk category of prostate cancer.....as a lay person who had been diagnosed with early stage prostate cancer one and half years ago ago, and had studied the treatment options of this disease, it is my opinion that you are an excellent candidate of success for virtually every treatment option.....all the docs in the different speicialties want you. Additionally the posters at this thread who have have various treatments that they feel were successful are touting these treatments..you have to read between the lines since in my opinion some of their choices have not been the best.

I personally have choosen active surveillance.....I feel that it's best for me since there is a very good possiblity that I have indolent cancer, not likely to spread and I may die with the disease, not because of it; additionally if my cancer does progress I feel that I will have enough time to take immediate action for a different treatment choice....I m not interested in overtreating my cancer, and hopefully in the future there is a possiblity that a better cure may come about.

Currently I enjoy an excellent quality of life with no side effects which one may have with another treatment option..............I feel that there is no reason to rush into a treatment that has a good chance of side effects.

Kongo recommended a book "Invasion of the Prostate Snatchers" , so far I have read about half of the book........and I agree with the first seven chapters of the book, which I personally experienced .

Basically this is your choice....do your research.........there is no rush.

Good luck
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