Proton Radiation Therapy -- My Journey With Prostate Cancer -- Treatment Period 2/22/07-4/18/07

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pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 12/28/2007 12:01 PM (GMT -6)   
Note:  My original thread (Posted 2/12/2007 7:46 PM (GMT -5) has been locked because it reached the maximum permittable size.  It can be found at: http://www.healingwell.com/community/default.aspx?f=35&m=726381.  The following is a new thread of my journey to date.
 
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. 
 
4th PSA Test 12 months after treatment (4/29/08):
 
In the past 3 months my PSA dropped from 1.7 to 1.6.  I had hoped for a slightly larger decline, but at least my PSA is still going down! My radiation oncologist made the following comments:  "Declines in PSA are rarely smooth. Now that I think about it, you may be better off just checking the PSA only every 6 months and not seeing all the bumps on the way down.  I think this decline is absolutely fine. I usually estimate that at 12-18 months the PSA will be a quarter of what it was at diagnosis and that is exactly where it is."  My doctor's comments were comforting and I am happy that I will only have to think about my PSA test results every six months now!
 
5th PSA Test 19 months after treatment (11/14/08):
 
In the past 7 months my PSA dropped from 1.6 to 1.0.  I am very humbled and thankful that my PSA continues to decline, notwithstanding that this will still be a life long journey of monitoring my PSA in hopes that my cancer will have disappeared.  In 19 months after treatment, my PSA has dropped 86% from 7.1 to 1.0. 
 
Rectal bleeding noted in stool (12/19/08):2nd Anniversary or 24 months after treatment (4/17/09):
 
Rectal bleeding is a side effect that can occur with some patients sometime after treatment; it is expected to disappear eventually. I have talked with other patients who have experienced this side effect with no serious consequences.  It does not appear in my case at this early stage that there is significant blood loss and it does not appear to occur every day. When I consulted with my radiation oncologist he made the following comments:
 
 "Approximately one in eight men will see some blood on their stool at some stage after treatment with radiation (any kind). It comes from a late-developing fragility in the lining of the front wall of the rectum. It is usually painless, a little like hemorrhoids, and really not much of a big deal. It is rarely serious. It can be made worse by blood thinners like coumadin. The usual management is:
 
1. reassurance and understanding
2. Colonoscopy to double check that radiation is really the cause and that we are not missing something more serious
3. Soften stools to avoid abrasion when constipated
4. Patience.
 
It is usually intermittent and ultimately resolves completely (over months or years) for reasons we don't understand. If it is a big nuisance there are things we can do (suppositories or even laser coagulation of the bleeding spots) but they are not first line."
 
 2nd Anniversary or 24 months after treatment (4/17/09):
 
I was blessed with the good news that my PSA had dropped from 1.0 to .07 during the past five months.  Other than some minor infrequent rectal bleeding, I have been most fortunate not to have experienced any adverse side effects since treatment.  My radiologist is happy with my progress to date. 
 
3rd Year after treatment:
 
In October '09, I had a slight bump up to 0.9 which my radiation oncologist told me he was not concerned about it and that I should not worry. On my 3rd anniversary after treatment (April '10) my PSA dropped down again to a new low of 0.6. The key is to have the PSA stabilize within three years of treatment, hopefully in a range below 1.0, and stay there.  Minor bump ups, however, can happen from time to time.


-70 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), 1.6 (12 mo.), 1.0 (19 mo.), 0.7 (24mo).  Radiation oncologist said: the 3-mo. drop of 70% exceeded expectations; the slight 6-mo. bump up was not a cause for concern now; expected drop in 12-18 mo. is 75%.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy (which is now locked from further postings).  http://www.healingwell.com/community/default.aspx?f=35&m=1002871 
 
 

Post Edited (pcdave) : 8/11/2010 8:04:38 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 12/28/2007 5:50 PM (GMT -6)   

tongue  Dear Dave,

You will always be tucked close to our hearts in thoughts and prayers… Feel our warmth…

We’ve traveled this path together ~ and we thank you for this.

Warm thoughts and gentle hugs surround you!

Thank you for staying close...

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 12/29/2007 6:11 PM (GMT -6)   
Hi Dave - Good to see you...Sounds like things are going well and I'm sue that trend will continue.
Your history is so well documented and what a great help to those who choose the same path!

I'll be looking for your next result in Jan.

All the best in the coming year,
Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
3 mo. PSA Post LRP Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
09/06/06: 6 mo. PSA: 18.8 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1
11/27/07: PSA 0.1


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 12/29/2007 6:28 PM (GMT -6)   
Hey Dave,

Great job on your story. It has so much information and great references. Congrats and Happy New Year to you and yours...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 10/17/07 0.00. 
Next PSA test on 1/15/08
 
"Patience is essential, attitude is everything."
 


Jim-N1BRP
Regular Member


Date Joined Jul 2006
Total Posts : 165
   Posted 1/21/2008 8:35 AM (GMT -6)   
I need to THANK YOU for posting your journey, if it wasn’t for me reading it I would have never consider IMRT. I could have had proton but MGH is 60 miles away and would have taken 1 hour 45 min’s on a good day, just too much of a commute for me after radiation treatments. The IMRT I will be receiving is being done by MGH at there Bethke Cancer Center, Emerson Hospital, Concord, Ma.

Jim, 54,~Jim-N1BRP. My Journey
Diagnosed: 12Nov. '07, Age 54

Treatment Start Date: 31 Jan 08

To be 42 treatment 1.8 Gy M-F for a total of 75.6 Gy.

Prostate Biopsy: 18Sept '06, - 10 sample all negative, Prostate size 36.3 cc

Prostate Biopsy : 12Nov '07, Biopsy - 14 sample 2 positive, one Gleason 6 at 5 %,
other Gleason 6 at 15%- Stage T1C -Prostate size 40.2 cc

Bone Scan: 12Dec '07, - Hot Spot on Brain
Family history: Father and two uncles  die from PCa

Other: GERD, 30% Carotid artery blockage, Kidney Cyst, Asthma

Meds, BusPIRone, Trazodone, Tramadol HCl, Omeprazole, Nitrostat, Plavix, Albuterol, Multi Vitamin  Mens

PSA's                   fPSA

1.2    Oct  05

3.61  Jul    06    

2.6    Sept 06          19%  

2.6    Apr 07             3% Oh NO

 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 1/24/2008 8:25 PM (GMT -6)   
Hi Jim (N1BRP)

I am glad that my journey was helpful to you. It appears from your stats that you are still in an early stage of PCa for which you can be thankful. As I have said in many of my postings, I do not believe that there are any definitive studies which prove conclusively that proton radiation will produce any betters results longer term than IMRT radiation.  While proton radiation is deemed a safer form of radiation, IMRT or x-ray radiation is very sophisticated today in the manner in which it is delivered to the body in the treatment of PCa (to help avoid damaging good tissue in the area treated). MGH is a great hospital! Please keep us up to date on your journey with IMRT. A few of the members here have been treated with IMRT and I think it is important to get good feedback from men who have been treated with some form of radiaton. Those treated with radiation are still in the minority here! I wish you the best of luck and will be thinking about you as your journey continues. God Bless!

Dave


-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 (pcdave) : 1/24/2008 8:55:06 PM (GMT-7)


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 1/24/2008 8:35 PM (GMT -6)   
Hi everyone
 
I just got the results of my 9 mo. PSA test today.  Much to my relief I am still heading down.  Now at 1.7.  I have updated my journey (see first posting above) which contains more details.  Many thanks to those who have encouraged me with their kind and thoughtful messages since I started my journey.  This forum is unquestionably one of the most useful resources on the internet for those who learn that they or one of their loved ones have prostate cancer.  The members here are "over the top". We are fortunate beyond belief for the undying devotion of our dear "Mama Bluebird" who guides, instructs and encourages us with her masterful prose, especially her comforting spiritual sentiments.  She has made so many improvements to our forum, especially providing links to so many topics provided by our members.  God Bless you Mama!
 
Dave


-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 (pcdave) : 1/24/2008 8:52:01 PM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/24/2008 8:47 PM (GMT -6)   
God Bless you Dave,
You deserve these great numbers. After all, you are one of the finest supporters here.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
Visit my journey at:
 
STAY POSITIVE!


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 1/24/2008 8:51 PM (GMT -6)   

Hey Dave,

Great numbers!!  You are headed in the right direction - down.

Thanks for the update...

Jim


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 1/24/2008 9:10 PM (GMT -6)   
Dave

Good news on the PSA test, keep it going until you pitch nothing but 0's

Norskie
norskie
Age 49, PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Pathology report 4+3=7 a couple agressive Grade 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
Catheter removed 1-18-07 suffered bladder spasms Catheter reattached 1-18-07 Catheter removed 2nd time 1-24-07
1st & 2nd Post PSA Blood Test .1 and less - Undetectable
3nd Post PSA Blood Test 01-17-07 .3-Next action awaits me.
Next PSA Scheduled and meeting with Radiologist set for 3-27-08
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


Jim-N1BRP
Regular Member


Date Joined Jul 2006
Total Posts : 165
   Posted 1/25/2008 8:11 AM (GMT -6)   
Dave,

Nice numbers has the RO predicted what your NADIR might be? I know it won’t be a 0..

Once again THANKS

pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 1/25/2008 12:05 PM (GMT -6)   
Hi Jim
 
From my knowledge, after radiation treatment, it appears that the PSA nadir (i.e., low point) should ultimately drop to 0.2 or lower and stay there (some medical literature refer to a nadir of under 0.5).  It can take up to two years or longer to reach the nadir.  Some experts say that a slow decline to the nadir in two years or longer is preferred.  A more rapid decline to the nadir in a shorter period of time is sometimes associated with recurring cancer.  If the nadir is reached and subsequently the PSA begins to rise again, it is often associated with recurring cancer.  Those that cannot achieve the nadir of 0.2 or lower, especially those whose nadir only drops to 1.0, may experience recurring cancer.  The bottom line here is that patients who elect radiation treatment have a long wait (compared to surgical patients) in hopefully getting to the desired 0.2 or lower nadir. There is also the possibility of PSA bounce which can occur at some point on the downward trend to the nadir.  This does not necessarily mean that a patient will experience recurring cancer.  In a great majority of cases, sometime after the period of bounce, the PSA will continue its downard trend to the nadir.
 
Dave


-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 was not a cause for concern now.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.  
 
 

Post Edited (pcdave) : 1/25/2008 11:21:11 AM (GMT-7)


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 1/25/2008 3:17 PM (GMT -6)   
That's great news Dave! Your concise telling of your experience with PC & your choice of treatment has been a help to many, I'm sure.

Bless you,
Susan
Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1
11/27/07: PSA 0.1


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 1/26/2008 11:14 PM (GMT -6)   

Yea!! Dave,

 

3rd (9 month) !!!~~~>>>  Woo~Hoo <<<~~~!!! undetectable

 

Cause for celebration!!!!!  Definitely!!!

What a wonderful day it is ~ each and every-day….   

Enjoy it to the fullest. 

 

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for continuing to share!

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.

 

J  Caring is Sharing ~  Thank You for Sharing  J

 

 

tongue  Wonderful news Dave…. And your threads are wonderful!!! 

A true sharing of ones personal journey… all in one place!!!

Your special thoughts and words are truly heartfelt. 

I’m so glad to see you posting and knowing you are staying close brings a gentle smile and a warm heart to both of us!  You are a true “gentle” man ~ thank you friend.

Hugs from Lee & Buddy 


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/26/2008 10:09 PM (GMT -6)   

Dear Dave,

 

You’ve just been HUGGED by  *bluebird   yeah   

( Lee, Buddy & Murphy too! )

 

I am in the process of linking your "locked thread" to the new thread... it truly is important isn't it!

 

Your signature looks great!!! and this title can now be changed to 1-18-08

What a journey.... thank you so much for continuing to walk with all of us.

Heartfelt from Lee & Buddy

 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 2/26/2008 11:19 PM (GMT -6)   
Dear Bluebird (Lee)
 
Many thanks for making the cross-reference between my locked and unloced thread.  I am humbled after noting that I have had almost 5,000 reads on my two threads. The key is not to promote any particular treatment here, but to educate others with our knowledge of and experiences with prostate cancer.  You are doing such a fantastic job as our leader--your contribution has been invaluable to us.  I see the names of so many new members here all the time--I don't know how you keep up with it.  Our forum is in great demand! God Bless!
 
Dave
 
P.S. Thanks for the hug! Chirp! Chirp!


-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 was not a cause for concern now.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.  
 
 

Post Edited (pcdave) : 2/26/2008 10:23:16 PM (GMT-7)


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 5/6/2008 10:42 AM (GMT -6)   
Hi Everyone!
 
Sorry I have been absent of late, but I have needed a break for awhile.  I recently met a guy (early 50's) at a local PCa support group who had a radical prostectomy about five years ago and is now faced with more treatment because his PSA is starting to rise again.  I am trying to give him some good suggestions and morale support.  I have recommended this forum to him, but don't know if he will opt for it.  As we know from this wonderful support group, some of our members have had to face advanced PCa, which can be a difficult journey.  There are some heros here who have faced it in a very uplifting and positive way--you have been a true inspiration to all of us.
 
I just received my one-year anniversary post-treatment PSA results which I have posted in my first thread above.  I have gone from 7.1 before treatment to 1.6 one year after treatment.  The decline in the past three months was only .1--I had hoped for a little larger decline.  My radiation oncologist made the following comments: "Declines in PSA are rarely smooth. Now that I think about it, you may be better off just checking the PSA only every 6 months and not seeing all the bumps on the way down.  I think this decline is absolutely fine. I usually estimate that at 12-18 months the PSA will be a quarter of what it was at diagnosis and that is exactly where it is."  What more could I ask for at this time?  Not a thing!
 
I often think of the many wonderful members here who have offered me so much encouragement during my journey.  God Bless to All!
 
Dave
 
-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 was not a cause for concern now.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.  
 
 


Jim-N1BRP
Regular Member


Date Joined Jul 2006
Total Posts : 165
   Posted 5/6/2008 11:13 AM (GMT -6)   

Dave, 

Thanks for your update and here’s to many more great posts. I must take my hat off too you for taking one in need under you wings. Next year I hope that we can meet up at the “Weekend of Hope” in Stowe.

 Jim

 


Jim, 54,~Jim-N1BRP. My Journey
Diagnosed: 12Nov. '07, Age 54

Treatment Started : 31 Jan 08

Completed 31 Mar 08

42 treatments 1.8 Gy M-F for a total of 75.6 Gy.

Prostate Biopsy: 18Sept '06, - 10 sample all negative, Prostate size 36.3 cc

Prostate Biopsy : 12Nov '07, Biopsy - 14 sample 2 positive, one Gleason 6 at 5 %,
other Gleason 6 at 15%- Stage T1C -Prostate size 40.2 cc

Bone Scan: 12Dec '07, - Hot Spot on Brain
Family history: Father and two uncles  die from PCa

Other: GERD, 30% Carotid artery blockage, Kidney Cyst, Asthma

Meds, Hytrin, BusPIRone, Trazodone, Tramadol HCl, Omeprazole, Plavix, Albuterol, Multi Vitamin  Mens

PSA's                   fPSA

1.2    Oct  05

3.61  Jul    06    

2.6    Sept 06          19%  

2.6    Apr 07             3% Oh NO

 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 5/6/2008 1:06 PM (GMT -6)   
I'm glad you are exceeding expectations and have a doc that can present realistic assessments to you.  sounds like you are steadily progressing.  Congrats

James C. 
 
Help support the forums so they can support you:  http://www.healingwell.com/donate 
 
Age 60 
4/19/07   PSA 7.6, referred to Urologist, recheck 6.7
7/11/07   Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07   Path report:  3 of 16 PCa, 5% involved, left lobe , GS 3/3:6. 
9/24/07   (Open) Retropubic Radical Prostatectomy performed 
9/26/07   Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07  ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08  Caverject started/stopped, aching.  2/24/08 .5ml Bimix started-success
3/24/08   ED- 6 mts.-Viagra, pump, no response- Bimix continues
Post-surgery PSA's:  3 mt:0, 6 mt:0,


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 5/6/2008 3:05 PM (GMT -6)   

Dave:

Nice to see your post and that the PSA is on the continual downward slide.  Mine did about the same at 1yr - about 1/4 of original PSA.  Things are looking good.  Take care.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - 2001 - No side effects.  My journey is at: http://www.healingwell.com/community/default.aspx?f=35&m=727565
7yr PSA - 0.2
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 5/6/2008 3:40 PM (GMT -6)   
Dave - It's good to see you here and know that things are going well for you. This thread is great for men who are thinking of Proton therapy for treatment. I hope your friend will come by here - there are quite a few guys who encourage each other and will answer any questions.

Take care of yourself,
Susan
Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
PSA - Undetectable since 6/07/07

Link to journey:
http://www.healingwell.com/community/default.aspx?f=35&m=826731


artu 7
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/8/2008 8:26 PM (GMT -6)   

hi everyone.  i am a new member.

  i had RP in 6/02  gleason was 4+4=8.  the pathology report was that  one was a bad 4.  full incontinence  and impotency. however, i have been able to address the impotency with  the pump and  viagra. 

 psa remained <0.1 until i had my yearly  check in 7/08 show psa had risen to 0.1.  had second psa on 9/28/08 and it had risen to 0.2.  i was then scheduled for biopsy  on 10/25/08.  psa was taken again one week later and i received  same results of 0.2.  i really didn't expect it to change in such a short period. oncologist said that  0.2 and above usually means something is "cooking."  hence  the biopsy. oncologist said radiation would be the treatment and hope that will effect a cure.

   i recently heard about the proton therapy and that the side effects a little or virtually non existant vs imrt.   i really appreciate Dave's  step by step  of what one  may expect, however, keeping in mine that people a different.  i understand that there are only 4 treatment sites in the country.  if i elect the proton therapy i will have to travel to houston and rent an efficiency unit  such as EXTENDED STAY SINCE I AM APPROXIMATELY 1,000 MILES FROM THE NEAREST SITE.

  i would appreciate opinions  if the  lesser side effects of the proton therapy  override  the travel ,or, are the side effects of the IMRT  such that i should consider it since i am 40 minutes from treatment site.

  i would appreciate hearing of  your experinces.

  thank each of you who respond.

 


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 10/8/2008 9:35 PM (GMT -6)   
Hi Dave,
 
What a great posting. Thanks for all that good, detailed information and congratulations on the good test results. I wish someone with EBRT or IMRT would give us a similar post. I will undergo salvage radiation soon and would really be interested in others experience.
Wishing you many, many low PSA readings.
 
Magaboo

Born Sept., 1936
PSA 7.9
Stage T1C
-ve DRE
Gleason's Score 3+4=7
2 of 8 positive
open RP 28 Nov 06
Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06
Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08
Next step: Salvage RT


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 10/8/2008 9:51 PM (GMT -6)   
dear artu7

i am happy to hear that my postings about my proton therapy treatment may be helpful to you in making a decision on your next stage PCa treatment. my heart goes out to you and other men who get the news down the road that their first treatment does not appear to have been entirely successful because the PSA starts to climb again. i am not as familiar with the decision making process at the various proton centers with respect to treating patients whose surgery for removal of the prostate didn't entirely eliminate the PCa. i believe that Loma Linda in California has been more receptive to treating cases like yours. I can't speak for the other proton centers in Bloomington (Indiana University), Boston (MGH), Houston (MD Anderson) and Jacksonville (University of Fla.) because i believe that their centers allocate a good portion of their treatment time to cancers other than of the prostate.

a recent controversy has arisen which questions whether proton radiation with its substantially higher cost than photon or x-ray radiation (which is much more sophisticated today) justifies opting for proton radiation treatment. in fact, the radiation oncologist who treated me, who is considered one of the top authorities in the country, has questioned this premise and has suggested longer ranger studies be undertaken of patients subjected to each treatment to compare their effectiveness and the side effects resulting therefrom. notwithstanding, it is a well known fact that proton radiation is a safer form of radiation (it enters the body through good tissue at a very low dose, hits the cancerous target at the full dose and then stops). Conversely, x-ray radiation enters the body at the full dose to hit the target and then leaves the body at full dose. i don't care what they say, x-ray radiation potentially can cause damage to good tissue in the process of treatment. with proton radiation the chances of damaging good tissue are significantly less. all of this has to do with the potential for longer term side effects. unfortunately, no definitive studies exist today to prove or disprove any of this. therefore, for me the only choice would be proton because the comparative risk versus x-ray radiation is not well know. i am not a gambler. because of the recent controversy there are some hints that medicare may ultimately refuse to pay the much higher cost of proton treatment if it can't be justified versus the relatively inexpensive cost of x-ray radiation.

you will find in this forum a small number of men who have been treated with x-ray radiation for recurring PCa. many of them have been treated more recently and apparently with success. however, the unknown is what side effects they may experience in time. i was treated in april of 2007 and have had no noticeable side effects from my treatment to date. many patients treated with proton claim little or no serious side effects years after treatment. only you can make the decision as to whether or not it is worth traveling away from home for several weeks to get the proton treatment or to get x-ray radiation close to home. you might want to read Bob Marckini's book on proton treatment referred to in my thread above. best of luck to you. hopefully, after your secondary treatment is completed all of your cancer will be eradicated. god bless!

dave
-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), 1.6 (12 mo.).  Radiation oncologist said: the 3-mo. drop of 70% exceeded expectations; the slight 6-mo. bump up was not a cause for concern now; expected drop in 12-18 mo. is 75%.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.  
 
 

Post Edited (pcdave) : 10/8/2008 10:01:50 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/8/2008 10:24 PM (GMT -6)   
Hello Artu 7,
Dave is our resident expert on rdiation. He has put together some awesome posts here on the matter. I have already had adjuvant IMRT treatments. I have done well. I know that proton promises precise treatments options, but as some of our members are hearing, precise might not be enough in the right spot. I can't answer that with certainty. I used IMRT from 7 angles. my PSA is cooperating while on HT, but that's another comparison inhibitor. I will know more next year.

Best to you and welcome the best site on the web I have found!

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

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