Prostate Cancer Community

My recommendation is to investigate Proton radiation therapy, which is much more precise than IMRT and the side effects are minimal to zero. I chose that 9 months ago, and am delighted with the results - no incontinence and no impotence. I've talked to many others who have had the same treatment with glowing praise.

Hi Niles,

Sounds like your radiologist has a good plan for you. That is the treatment that I would select if I had the same stats as you. I have been fighting my PCa for 17 years using almost every type of treatment available. I am 75 yrs old and very active bowling in 4 leagues,golfing, boating, working in my yard, and riding my motorcycle. I am telling you this to show that there is still life even with PCa. Best wishes with your treatment!

PCbob

pcbob,

Thanks for the encouragement. I must ask about any long term side effects of the radiation treatments.

Niles73

Hello, Niles73. I had 8 weeks of radiation therapy, Gleason 3+3, 40% of one core only, nothing felt with digital exam, clean bone scan, etc. My doctors recommended "watch and wait," but I couldn't live with. My first choice was Proton Therapy at the U of Indiana -the closest center for me in Chicago- but I change my mind after a report my the Chairman of the Loma Linda University, the pioneer in Proton Therapy, listed constipation as one of the side effects ( They insert a balloon in the colon, and presurize it with water to keep the prostate from moving -to help precision of the beam) and that messes the elasticity of the colon that wrecks bowel movement. Another member here had Proton in Florida, and said they did not use the balloon there.

The only side effect of radiation is sexual dysfunction that appears about one year later. No tubes, no incontinence, and no pads - never.

I suggest that the first thing you should do is to cancel the appt. with the Da Vinchy surgeon, and exclude surgery as an option. Forums are full of people who had them, have incontinence and impotence, and later are told the PSA is rising because some cells survived the surgery, and they have to do a full 8 radiation - like I had- on top of the surgery. Forget the half-radiation and seeds. It is probably more profitable for the combine thereapy for the doctor and the hospital.

I suggest Proton Therapy in Florida (I am not sure which university) if your insurance cover the treatment there. And of course you will have out of pocket expenses. If I knew they did not use the baloon in Florida, I would have gone there.

The University of Florida Proton Therapy Institute is the non-profit facility in Jacksonville. I went there and have had no side effects after nine months. I haven't heard of anyone who has had the treatment complain about sex dysfunction.

That is good news Bogie11, and I hope you never have any sexual dysfunction. Since sexual dysfunction after radiation appears around 11-12 months - I also had none the first 9 months, you have some time ahead to gauge the final result. If you don't have any dysfunction after May 2010, then Proton Therapy might become the best treatment available for PC treatment. I don't mean to be negative here; I just try to give the best advise to PC patients going through the maze of PC cancer options, and there is a strong financial interest involved in those options among both doctors and hospitals, since doctors are major stockholders in most hospitals.

I am very surprised to hear any form of radiation being suggested for a 54 year old. Chance too high of incontinence and/or ED.

There is another option, it's HIFU (high intensity focused ultrasound), it's been in use in Europe for 18 years, Japan 10 years, Canada & Mexcio 5-6 years. No chance of incontinence. 19% ED rate, but I understand that if ED happens it goes away, and Cialis will correct ED until it settles down by itself.

It is in clinical trials in the USA, call 888-874-4384 to find a trial near you. Or pay $25,000. and have an American doctor treat you in Mexico, he brings a full team, the anethiesologist and technician to over see the machine, and nurses. It's a quality operation. The procedure lasts 2 to 4 hours, is pain free, no hosital stay. You get a supra pubic catheter for 2 weeks so the ash can wash out.

Am I glad I read about HIFU on the web, a stranger told me, I've sent in many men and all are thrilled, feel they dodged the bullet.

Thyestes,

thanks for the reply. Specifically what do you mean when you say "sexual dysfunction"?

Hello, Niles 73. Here are some views regarding you question. After about 11 months, there is a lost of sensitivity in the penis. That means erections are not full, and that makes the penis smaller - as the larger size exists only in the so called "rock hard" max erection. Also is easy to lose an erection, even though it can be recovered. But it is not as it used to be, when the erection subsided only after a climax. Of course at 65, things are not as they are at younger ages. I tested my testerone, thinking it might be low, but it came up as 460 on the range of 250 to 700. My doctor gave me Cialis samples, but I never tried. I keep them - just in case find someone worthy to use for. I do have "morning wood" climaxes that feel almost as good as before, and that tells me that the plumbing is in order. Some people in ED forums say that the best cure for ED is a 20-year old girl friend. As I have an aversion for prostitutes, my experience is based on old women where the sexual attraction is almost nonexistent. Am I sorry for choosing IMRT radiation? No. I have read about 200 cases in various prostate cancer forums and boards, and I don't believe that there is any prostate procedure that does not affect sexual performance. In IMRT radiation, sexual performance is actually superior until about 10 months after the end of the treatment, and then goes down significantly, and then recovers incrementally to about 80% -85% depending on other health and psychological factors. Finally, I suggest that you read as many PC message boards as possible before you commit to any particular procedure. Good luck to you.

that helps a lot. I have a very attractive wife of 31 years and sexual function is very important to us. Of course beating the cancer is the priority, but a full life is too!

that's something rarely talked about...the fact that side effects occur up to 3 years post after radiation.

Sex is actually better after HIFU, I wonder if it isn't because the swollen gland is gone....actually the gland is still there, it's just empty....but no restrictions.

Hi Niles, - Either Surgery or Radiation is probably a viable choice for your treatment.

In my 11 years of experience in educating and counseling men with Prostate Cancer (PCa), it is my observation that the stage of the Cancer rather than the choice between the 2 forms of traditional treatment is the major factor in successful results. In other words, the treated tumors that do well with surgery tend to have the same characteristics as those that do the best with Radiation Therapy (RT). In the case of biologic recurrence after surgery as the Primary treatment, radiation (EBRT) has been the long-standing recommendation for salvage therapy, PROVIDING the recurrence is thought to be a ?localized? one. Because the origin cannot often be determined with certainty, the overall curative success rate with salvage RT is about 30 to 50%.

In the case of failed Radiation, when it is used as the Primary treatment, salvage surgery is RARELY recommended because, although it is POSSIBLE to do such salvage surgery, the accompanying potential morbidity (side effects) substantially increases, by as much as 10-fold according to some studies. Since external beam radiation cannot be repeated, salvage options are left largely to less proven approaches, such as cryo-surgery (freezing) and/or HIFU (heating), without the support of long-term evidence of efficacy enjoyed by the traditional treatments.

ASSUMING equality in the effectiveness of treatment, which some might argue in long-term results such as 10-15 years following treatment, the post-treatment recovery and success measurement should be rationally compared. I say this because of my belief that treatment choices with early-stage PCa, often reflect a man?s personality traits, as well as the considerations involved relating to the extent of his Cancer.

In the case of surgery, the patient has the advantage of relatively clear and quick markers of potential success. The post-surgical PSA should drop to an ?undetectable ? level (

Continued from Part One -

In the case of surgery, the patient has the advantage of relatively clear and quick markers of potential success. The post-surgical PSA should drop to an ?undetectable ? level (LESS THAN 0.1 ng/ml) within 8 to 12 weeks, and remain there. If at any time becomes ?detectable? at a level above 0.1 and reaches 0.2 ng/ml, it is quite likely that a recurrence is taking place.

The ability to directly examine the excised Prostate under the microscope, allows greater accuracy in determining the true status of the Cancer that is present. If, elevated risk factors are found, because of the extent and grade of tumor found, it can then be promptly administered.

Any morbidity (side effects) experienced is, normally, also experienced early in recovery, with steady improvement usually found over subsequent weeks and months. Temporary incontinence and impotence are common, immediately following treatment and recovery of potency (erections) is usually the last aspect to return to normalcy. Depending on age and/or pre-treatment performance, this time frame varies by individual. Erectile Disfunction (ED) generally has increasing involvement commensurate with increasing age and can be permanent in older age groups. There are artificial aids available for those experiencing prolonged or permanent ED, that report varying success.

In the case of Radiation Therapy (RT), the markers for success are less explicit and take longer for identification. It can take up to 2 years for post-radiation PSA to reach its Nadir (lowest point) and as a result there can be more PSA anxiety involved, during that time period. While treatment is being rendered there is a cumulative effect that often results in transient urinary urgency and frequency, as well as a sense of fatigue. These symptoms usually resolve, themselves with only minor intervention, if any, within a reasonable time period once treatment is concluded. Occasional fecal incontinence can occur but the risk is relatively low with more modern equipment now available.

With the extended time period for reaching PSA nadir, there is also more than one proposed measurement for projecting successful treatment results. One registers greater success for patients whose PSA readings reduces to a level below 0.5 ng/ml, another below 0.2 and a third is defined as a stable PSA that does not rise.

Treatment ?failure? has 2 widely used definitions. The long-standing ASCO definition is: 3 consecutive increase in PSA reading, above its post RT nadir. Such readings are to be at least 3 to 6 months apart to ensure meaningful accuracy. The second, and more recent, is the Phoenix definition, which defines treatment failure as a rise of 2 ng/ml or more, above the post RT PSA nadir.

Approximately one-third of radiation PCa patients will experience a temporary, transient, upward ?bump? in PSA readings somewhere between 1 and 2 years (ave: 18 mo.). It is important that this possibility be recognized so that such temporary elevations are not mistakenly construed as treatment failure. This event, if it occurs, has no adverse effect on the ultimate favorable resolution of his PCa.

ALL treatments have associated potential morbidity. With surgery they tend to be immediate and steadily improve, while with radiation they tend to see little change early, but tend to experience a more gradual deterioration over the 2-3 year treatment period. Studies indicate that 3 to 5 years following treatment, the initial differences in morbidity have become much more closely alligned.

So there you have it, not a particularly pretty story but one that, in my opinion, realistically represents the quite diverse recoveries experienced by many patients (not all), depending largely upon which form of treatment they have selected.

Good luck! ? John@newPCa.org (aka) az4peaks

John and all,

these very informative responses are exactly what we are looking for.

niles77