Posted 2/12/2007 6:46 PM (GMT -6)
Introduction I am starting 8 weeks (39 days) of Proton (Radiation) Therapy on 2/22/07 because I think it is the right treatment decision for me at my age. My purpose is not to promote any type of treatment, but to educate all prostate cancer patients in the various treatment options, so that they can make their own decision. The majority of men still select surgery as their form of treatment, which is very obvious at this great message board. Many prostate cancer patients don't know about Proton Therapy (which is an emerging therapy with new proton centers opening in the United States—see below) or don't know enough about it to fully assess whether or not it may be appropriate for them. I think this is a mistake. Age, medical condition and PC stats should play a major role in any treatment decision. In the end analysis, you have to go with your heart after an exhaustive research of all of the treatment options, their potential for cure based on your PC stats and the potential risk of negative side effects which you are willing to live with if they occur. The rest is in God's hands! I do not believe that there is any perfect treatment for prostate cancer at this time.
My Prostate Biopsy I had a 29-core biopsy on September 27, 2006! I must confess that there was not much discomfort. A sedative was injected into my prostate (a little pin prick through my rectal wall into the prostate—then you could feel the sensation of the serum being injected). Then it was 29 clicks and we were done. So don’t be fearful of a biopsy—make sure that your urologist performing the procedure gives you some kind of sedation in your prostate beforehand. I was surprised at the number of samples taken, but it gives me greater assurance of my stage of cancer. If you have a biopsy, don’t settle for less than 12 samples; a minimum of 20 would be preferable. Having too few biopsy samples may not give you the best indication of your stage of prostate cancer which is critically important in selecting your treatment. My Big Mistake—Don’t Be Afraid of a Prostate Biopsy Over three years before my biopsy, my internist recommended to me to get a biopsy when my PSA jumped up to a little over 5. I didn’t like the thought of a biopsy and didn’t follow through. I then avoided a physical for two more years, at which time my PSA had jumped to over 8. At that time I panicked and quickly decided on getting a biopsy. I am still lucky to be in an earlier stage of prostate cancer, but I obviously would have been in a much earlier stage if I had taken my doctor’s advice. I am lucky that my prostate cancer appears to be slow growing. How Did I React to the News that I have Prostate Cancer I suspected with such a high PSA that I was going to be told that I had prostate cancer so I prepared myself for the worst news. Because I had a large amount of free PSA (i.e., 27) which indicates a risk of 18% in getting PC, I hoped that maybe I would escape PC. When the bad news came I accepted it, was depressed for a couple of days and then my adrenaline stated to pump as I hit the internet to learn everything I could about prostate cancer and related treatments. I have maintained a very positive attitude since that time—it is very important to do so. I also have a good support system in my family. Being blessed with my first grandchild (a boy) just before I was diagnosed with PC has helped also. Selecting a Treatment After extensive research and networking, I decided on Proton Therapy. My two choices were robotic surgery with one of the top surgeons and Proton Therapy with one of the top radiation oncologists. After much thought and considering my age (notwithstanding that I am still healthy and youthful in many respects), I decided against surgery because I didn't want to take the risk of almost certain impotence (possibly permanent at my age) and possibly total or some degree of incontinence. If I were substantially younger, I might well have elected robotic surgery. I did not want to have to deal with what I thought could well be 100% immediate impotence and the potential difficultly of regaining some degree of potency. I was even more concerned about the possibility of some degree of incontinence. In my final years, I want a reasonable hope for a cure, but also a good quality of life. Having to wear pads and diapers potentially for the rest of my life was not for me. I have read some of the heart breaking stories in these message boards of men struggling with the nasty side effects of surgery. Some side effects improve or go away, but sometimes they don't. Let's face it, choosing a treatment for prostate cancer is a gambling game--you have to weigh the odds. I also felt that Proton Therapy would be non-invasive compared to surgery, and is considered one of the safest forms of radiation, offering hope for minimal side effects. There is no question that radiation (including proton) can eventually lead to some degree of impotence down the road. However, in those cases, drugs such as viagra have been known to overcome the impotency in many cases which is not always true with surgery. Incontinence usually does not happen after proton therapy. I met with a top medical oncologist and the conclusion was that the chances of a potential cure for me were about the same with surgery, radiation and brachytherapy (seed implants), but the potential negative side effects vary greatly among the various treatments. Quality of life is very important to me--I would rather live fewer years and live them well without having to deal with treatment side effects that make life miserable. I concluded that Proton Therapy offers as good a chance of success as surgery (the supposed gold standard) for me, with the potential for little or no negative side effects short and longer term. The problem I have with brachytherapy is the potential for some nasty urinary problems (e.g., strictures of the urethra making it impossible or difficult to urinate without some medical procedures). Also, the seeds could let loose and migrate to other areas of the body, including the lungs. I talked with one patient recently who was treated with seed implants followed by x-ray radiation therapy in July 2006; recently, he had to have medical procedures performed because he couldn't urinate. This does not mean that all patient having seed implants will necessarily have this problem, but it is somewhat common with seed implants which has been confirmed to me by other reliable sources. IMRT/IMGT photon (x-ray) therapy is the most sophisticated type of x-ray radiation today, but not considered as safe as proton radiation. Proton radiation enters the body at a low dose and the high dose is directed to the cancerous area and stops there; x-ray radiation enters and leaves the body at the full dose. It has more potential for damaging good tissue surrounding the prostate. I believe that IMRT/IMGT x-ray radiation has the potential for greater negative side effects than proton radiation. It is true with radiation therapy (either proton or photon), that it usually takes up to two or more years for the PSA to get to its lowest level compared to surgery where the PSA usually goes to zero immediately. It is true with surgery that it makes future radiation treatments possible if the cancer recurs. It is not necessarily true that the prostate cannot be removed if the cancer recurs after radiation therapy if the cancer has not escaped the prostate capsule. Some surgeons just refuse to do the surgery, but surgeons at such top hospital as Sloan-Kettering in Manhattan have removed the prostate after radiation therapy if the cancer recurs, depending on the circumstances. Tools to Use in Your Treatment Decision I suggest that you visit these websites: http://www.mskcc.org/mskcc/html/10088.cfm
http://jco.highwire.org/cgi/content/full/21/21/3979 (website not working presently--will try to find another website with this information)
The first website relates to Prostate Nomograms developed by Sloan-Kettering in New York City. You can input various information relating to your stage of cancer (i.e., PSA, Gleason Score, Tumor Stage based on DRE, etc.). The end result will give you 5-year progression free probability statistics comparing radical prostatectomy, external beam radiation therapy and brachytherapy. The second website is an interesting study, again comparing the success rates of the various prostate cancer treatments and related side effects. Keep in mind that EBRT (external beam radiation therapy) is an older form of radiation therapy and IMRT is the most sophisticated form of photon (x-ray) radiation today with the potential for fewer negative side effects. This should be taken into consideration when evaluating this data. Also, statistics relating to Proton Therapy are not considered here. Websites With Helpful Proton Therapy Information
http://www.oncolink.com/treatment/article.cfm?c=9&s=70&id=211 Other Resources for Prostate Cancer and Proton Therapy With respect to Proton Therapy, I suggest that you also consider reading a new book entitled "You Can Beat Prostate Cancer (and you don't need surgery to do it) by Robert J. Marckini. This book is a wonderful resource for newly diagnosed prostate cancer patients and will hopefully be a wake up call to them to at least learn about Proton Therapy and consider whether or not it is a viable treatment option for them. While this book is very oriented to the proton treatment that Bob received at Loma Linda University Medical Center in 2000, I believe it gives a very realistic, fair and unbiased discussion of each type of prostate cancer treatment, including the advantages and disadvantages (i.e., potential for negative side effects). It also has some valuable resource information in the book's Appendix. If this book had been available to me when I started my exhaustive research to determine the best treatment option for me, it would have saved me an enormous amount of time, stress and great anxiety, at one of the most challenging times in my life. You can learn more about Bob's book at the following websites, which include customer reviews.
Most prostate cancer patients don't know where to turn to when they first hear their diagnosis of prostate cancer. There are many other excellent books on the market as well as a vast amount of information on the internet. Books offer a good summary and a good starting place because you can otherwise get quickly overwhelmed on the internet. Message boards such as Healing Well and others are a great asset and comfort to prostate cancer patients while they attempt to gain knowledge about prostate cancer, share their knowledge with and give moral support to each other, and ultimately make their treatment decision.
I also highly recommend the YANA (You Are Not Alone) website which gives the treatment experiences of many patients classified by the type of treatment. There is usually e-mail contact information for each patient. I found this website very helpful for networking with other prostate cancer patients to get useful information from them about their treatments.
http://www.yananow.net/ Another great website is the Prostate Cancer Research Institute (PCRI) which has a wealth of very informative information about PC and the various treatments. http://www.prostate-cancer.org/
This website includes a listing of some of the top doctors who treat PC by treatment specialty. http://www.prostate-cancer.org/resource/special.html
Expected Side Effects from Proton Therapy Short-term (the feeling of a need to urinate more often than usual; could experience some burning upon urination; stools may be more watery; possible tiredness). Most of the short-term side effects, if experienced at all, tend to disappear after treatment. Many proton therapy patient claim no short-term side effects. Long-term (many of these symptoms may not appear until after a year or much longer; a certain percentage of patients will become impotent (usually substantially less than with surgery), but it is often overcome with viagra and other similar drugs; minor rectal bleeding which may ultimately disappear). Severe urinary and rectal problems are usually considered rare with proton therapy. New Proton Radiation Centers are opening in the United States There are now several Proton Therapy centers in the United States for treating prostate cancer and other cancers. Loma Linda University Medical Center in California has been performing proton radiation treatments since 1990 and has successfully treated thousands of men with prostate cancer. Massachusetts General Hospital (MGH) in Boston opened a new proton center in 2001 (replacing a smaller one in affiliation with Harvard) which was established in the 1950's. Two new proton centers were opened in 2006, one at the MD Anderson Cancer center in Houston, Texas and one at the University of Florida in Jacksonville. The University of Pa. is expected to open a new proton center in the next two years. The only reason that proton radiation centers have been slow to develop in the United States is the tremendous cost ($100 million or more). Even though Proton Therapy is presently the most expensive type of prostate cancer treatment because of the cost of developing a proton radiation beam facility, it is significant that Medicare has approved and will pay for the cost of this treatment. Your Comments If you note any information above, which you feel is inaccurate based on your authoritative research, please advise me so that I can make any necessary corrections. If there is any helpful information which can be added, please advise me. CT Scan on 1/22/07 in Preparation for Proton Radiation Therapy Beginning on 2/22/07, I will undergo proton radiation therapy for 8 weeks for a total dose of approximately 79gy. The preparation consisted of removing all clothing from the waist down and putting on a hospital gown opening in the front! When I entered the CT Scan room, they snapped my picture (gown closed in the front of course!) for identification purposes (i.e., matching me to my customized set up for each day's radiation treatment). I was certainly the center of attention that day with two female nurses and one male student intern, in addition to the doctor. The intern proceeded to place four small permanent blue dots in my pelvic area (above the base of my penis and below my belly button; then below my left and right hips on my upper legs). The doctor then appeared and inserted a dye into my bladder through my penis. The purpose of the dye was to pinpoint the location of my bladder in relation to the prostate, in order to protect the bladder from radiation during treatments. I will have to drink 14 to 16 oz. of water about an hour before my treatments each day to help suspend and keep the bladder away from the prostate. My legs were placed in a fixed pod and my feet were tied together facing inward (this will also be done each day during treatment to immobilize my body). Then they proceeded to take CT Scans of my pelvic area for purposes of computer mapping of the four dot markers in my pelvic area with my prostate. During the daily treatment, they use a sonogram machine to locate the bladder and prostate as part of the computerized alignment of the prostate to the proton beam. I will undoubtedly learn more about the exact technology when I start my treatments. The above preparation process took about a half hour or slightly more. My Proton Radiation Treatment Started on Thursday, February 22, 2007! At times my journey with PC seems so surreal--I can't believe I have PC, but I know I have to go through the motions to treat it and hopefully beat it. I guess it is good that I feel this way as it keeps me very positive. Luckily, I have been a positive thinker in life for the most part which has helped me greatly in my journey with PC. I feel a great need to help others who may be experiencing a much more difficult journey with their PC than I have thus far. This website has helped me immensely in trying to make a contribution to others. I think I am prepared to face whatever future I have to face with this disease. I have left it in God's hands. Day 1 of 40 (Thursday) Before each treatment I have to drink about 14 ounces of water about 45 minutes ahead of time, before which I urinate, which works out fine. I was asked to put on a gown opening in the front and to remove my clothes below the waist. I entered proton radiation gantry 2 and was helped onto the radiation table with my two legs placed into a leg pod (no prefixed body pod is used) with my toes pointing inward. Three attendants were there to assist. One of the attendants opened my gown and placed a covering over my crown jewels! Next a gel was placed on my abdomen and the scanning device for the ultrasound machine was rotated around my abdomen. I then saw the outline of my bladder and prostate on a computer screen. Also, an x-ray machine overhead was positioned over my body to take an x-ray of my pelvic area as part of the positioning process--this will be repeated from time to time. A month before the treatments started two blue tattoo dots were placed in my abdominal area and two on my right and left upper legs below my hips for positioning during the treatment. I was shown a special metal casing designed just for me through which the proton beam is delivered to my prostate (a slightly irregular elliptical shape). The proton is delivered to the prostate on each side below the hip (alternating between the right and left side each day). The beam is not directed into the prostate from the abdomen. The proton beam lasts one minute when all of the attendants leave the room. The entire in and out procedure takes about 20-30 minutes each day. I will visit with my radiation oncologist each Tuesday. Also, each Tuesday morning there is a support group meeting for current PC patients undergoing proton radiation treatment. Loma Linda this is not, but the radiation treatment is expected to be comparable! There is no feeling of any kind while receiving the radiation beam. I felt very tired later in the morning after my treatment, but doubt that this would happen the first day. I think it was just the emotions of starting treatment and the fact that I did not sleep that well the night before (going to the bathroom 3 times which is unusual for me) and getting up much earlier than usual to get to my 8:40am appointment. Day 2 of 40 (Friday) This 2nd day was pretty much the same and quite uneventful. I did get a chance to say hello to another gentlemen who was also under going treatment. I asked him if he experienced any side effects yet and he said the only one was some urgency to urinate or having to urinate more often. I also felt a little tired later in the day after this treatment and took an afternoon nap--I felt somewhat energetic when I woke up. Today (Saturday) I felt very tired and lazed in bed until early afternoon. I hope that I am not getting any fatigue early on with the treatments, but I can't really complain. It just may be the emotional experience of getting used to a new daily pattern in my life and getting on with my treatments. I am also away from home staying with my married daughter, her husband and my almost six month old grandson who I adore. Things happen for a reason in life and this unexpected bonding with my first grandchild adds something very special to my radiation treatments. My daughter and son-in-law are a wonderful part of my support team while away from home. Who would have believed that the city where I am having my treatments is where both of my children went to college. Go figure how life turns out! 2/28/07--1 Week down and 7 Weeks to go! The daily treatments go by very quickly. At the end of the 1st five days I am finding that my urine stream is much slower and weaker. I spoke to the nurse and she said to make sure that I consumed a minimum of 64oz (preferably 80oz) of water and other fluids each day. She also suggested taking some ibuprofen (e.g., Advil) to help relieve the symptoms which are considered temporary during radiation treatment. I usually have an opportunity to chat with other patients while awaiting my treatment each morning. I usually ask them, at the first meeting, what side effects they have had, if any. Recent feedback indicates maybe slower urinary flow and too frequent urination for which Flomax is prescribed; some tiredness can result as the treatments get beyond the 4th or 5th week. Some men have few, if any, side effects. At the hospital where I am being treated, they also treat many other types of cancers with the proton radiation. In the area where I am being treated, I see a lot of young children every day who apparently are being treated for cancers of the head. When I see them it reminds me that I am very lucky because my cancer is far less serious--it is very touching to see these brave young kids who have to go through the trials and tribulations of cancer treatment These kids still manage to smile and act like normal kids despite their treatment. It certainly must be tough for the parents. 3/7/07--2 Weeks down and 6 Weeks to go! During the past week I had a continuation of my urinary side effects (i.e., slower stream, more often and a slight burning sensation). I also developed a change in my bowel habits (i.e., more often with smaller stool formations). I consulted with my doctor and am now taking some Flomax for the urinary side effects and some Metamucil (orange powder in water) to better control my bowels. Prior to the Flomax I was taking Advil and have decided to continue taking a reduced dose along with the Flomax. At this point, I am getting some relief from all symptoms, but am not sure if the Flomax is better than the Advil. I get up about two times each night to pass a fair amount of urine. Prior to treatment, unless there were unusual circumstances, I generally slept though the night without getting up. Any of my side effects at this time are not really that bad. I have not noticed much fatigue during the last week and have felt pretty energetic.
3/14/07--3 Weeks down and 5 Weeks to go!
Not much of a change from the following week. The urinary and bowel side effects appear more pronounced some days than others. I believe that the bowel side effects are influenced by diet in addition to the radiaton. I have not really changed my diet that much. During radiation treatment you are supposed to back off of gaseous foods and foods higher in fiber. I love a lot of fiber (whole grains, fresh fruits, vegetables, etc.). Also, avoid highly spiced foods. My radiation oncologist checked just below my hips area where the radiation beam goes in to see if I had any tan there yet from the radiation. Just a little pinkness now! This area cannot be exposed to the sun for many months following radiation--no nude sunbathing this year!!!!!
3/21/07--4 weeks down and 4 weeks to go (50% completed!)
I still have the ups and downs with urinary and bowel side effects--it is difficult to understand why some days are better than others. On 3/21/07, I experienced frequent urniary flow and too many bowel movements from evening throughout the night--not a happy day or night which was quite sleepless. I haven't really experienced any serious fatigue yet, which some men get.
I am getting anxious to get my treatments completed and get my life back to some semblance of normality again. By the time my treatment is completed (approximately April 18th), about 7 months will have elapsed since I was diagnosed with PC. It takes over your life and wears you down, even when you have a postive attitude as I do. I often wonder if life will really ever be really normal again. Hopefully it will!
3/28/07--5 weeks down and 3 weeks to go!
The first day of the 5th week (3/22/07) is off to a roaring start after a bad day on Wednesday 3/21/07 (see above). The proton equipment wasn't functioning at the time of my 8:40am appointment, so my treatment will be extended by one day at the end. What a bummer! What can one do--these things do happen from time to time even at the best proton radiation centers.
Saturday 3/24/07 was one of the worst days from my urinary and bowel side effects--thank heavens it was on a Saturday and not one of my treatment days. Multiple bowel movements and urinary flow that day. The following three days my side effects subsided quite a bit. I just can't figure out a pattern here. On Tuesday 3/28/07, the end of my 5th week, I began a different stage of my treatment (i.e., now they narrow the proton beam to target only my prostate for the last 16 days of treatment). During the first 24 days of treatment they radiate a wider area to encompass both the prostate and the margins (to hopefully catch any cancer if it has escaped from the prostate).
4/3/07--6 weeks down and 2 weeks to go! (the end of treatment is getting nearer)
Bowel movements seem to have gotten back closer to normal. Still have some frequent urination from time to time, mostly starting in the afternoon up until bed time. Occassionly I have one or two nights where I have to urinate every 1 to 1 1/2 hours which is a pain. Starting to get some fatigue after my treatments and feel the need to rest during the afternoon. After a rest I feel pretty good again. The side effects seemed minimal during the weekend probably because of the lapse in radiation treatment. Overall, I can't complain too much about the side effects which I accept as part of the treatment.
4/10/07-7 weeks down and 1 week to go! (can't believe I am almost finished with my treatments!)
Had a pretty good week! Some occassional frequent urination--seems to start in the afternoon through the evening. Have to get up only one or two times during the night. Some occassional fatigue, but a nap seems to take care of it. Looking forward to the end next week!
4/18/07- 8 weeks down--treatment ended today!
Hallelujah! The final week was also pretty good. Some frequent urination was more prevelant than anything else. The next step is testing my PSA in three months. Hopefully it will be going down. It may take up to 24 months before it reaches its nadir (lowest point). With surgery the nadir is essentially zero, whereas with radiation it is about 0.5
Overall treatment observations:
--More frequent urination and very mild burning at times. My frequency usually increased starting in the afternoon. On average I probably had to get up during the night about two times which isn't bad. I believe that taking 2 advil in the morning and 2 before going to bed, along with one Flomax pill in the afternoon helped to reduce the urinary side effects, especially when the strem was slower than usual.
--More frequent bowel movements which got back close to normal in the last two weeks when the radiation was concentrated solely on the prostate (during the first four weeks the radiation covered both the prostate and the surrounding area or margin).
--Some fatigue now and then, but nothing major.
I would have to say overall that my side effects were manageable and that my proton treatment was a good experience with no extreme side effects. The total radiation dose was 78gy.
Update 4 weeks after treatment (5/18/07): Fatigue: No feeling of fatigue since treatment ended, although it was minimal during treatment Sexual function: about the same as before treatment. The semen is more watery and the quantity appears to be less than before treatment. Urinary function: In the past week urinary flow has improved and seems to be returning to normal or about the same as it was before treatment. I stopped taking Flomax about two weeks after treatment ended. Bowels: Seem normal or about the same as before treatment. Overall I feel very good and am thankful for that. Now I just have to wait for my first PSA test in July 2007. Of course, this will only be the beginning of continued PSA tests for the rest of my life! Welcome to the world of prostate cancer!
Update 8 weeks after treatment (6/17/07):
All body functions are doing well! My treatment seems like a thing of the distant past. My 1st PSA test is creeping up on me for mid-July 2007. How time flys!
1st PSA Test 3 months after treatment (7/19/07):
The good news is that my PSA declined from 7.1 to 2.1 or 70%. According to my radiation oncologist, this exceeded average expectations of a reduction in PSA of 50% three months after treatment. This is just the beginning of a long journey ahead for PSA testing after treatment, but I am happy to be off to a good start. With radiation treatment it can take up to 24 months to reach the PSA nadir (i.e., desired low point of under 0.5). I am realistic that the future holds hope, but no promises at this point. Nevertheless, I am optomistic about the future and trying to live each day to the fullest now.
2nd PSA Test 6 month after treatment (10/11/07):
My PSA had a slight bump up to 2.4 versus 2.1 at 3 months after treatment. My radiation oncologist said that I should not be concerned about the slight increase because it can take from 2-3 years to reach the nadir (low point) and along the way the pattern may exhibit some slight upward variations during the longer path of a continued downward trend toward the nadir. This slight increase in PSA at this time would not be considered PSA bounce unless the upward trend were to continue. Inasmuch as my three-month PSA dropped 70% (compared to an average expected drop of 50% or less), I am still considered to be ahead of the game. The key is to live life to the fullest, don't dwell on the PSA tests too much and keep an optimistic view of the future!
3rd PSA Test 9 months after treatment (1/18/08):
Because of the slight bump up in my PSA from 2.1 to 2.4 six months after treatment I was really sweating it out waiting for my 9 month PSA results.
I breathed a sigh of relief today when I found out that my PSA had dropped to 1.7. I asked my radiation oncologist if my PSA should be dropping faster. This was his response: " Patience is a virtue! I am happy with this decline and it is well within the bounds of what we normally see." So I can only hope that I am on a sure path to eventually getting to a PSA of close to 0, but the path may be slower than I would like! Whatever happens, it's in the hands of the "Almightly" for sure.
-69 years young!
-29 core biopsy 9/27/06 at age 68
-PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area], Gleason 6 [less than 5% in two other areas], Negative DRE, bone scan and Endorectal MRI.
-Completed 39 Proton radiation treatments 2/22/07-4/18/07.
-PSA History: 7.1 pre-treatment; post treatment: 2.1 (3 mo.), 2.4 (6 mo.), 1.7 (9 mo). Radiation oncologist said the 3-mo. drop of 70% exceeded expectations and the slight 6-mo. movement upwards is not a
cause for concern.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.
Post edited to add updates due to thread being locked by Admin (limit 5 pages)
Please click on this link to see current updates from Dave
Post Edited By Moderator (bluebird) : 2/26/2008 9:18:12 PM (GMT-7)