Prostate Cancer Survivors






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Re: ADT side effects

Aloha Warwick Ford,
Each procedure for PCa treatment has it's own set of side affects. Your doc is combining three procedures, bracytherapy HDR, EBRT, and ADT. Your starting conditions are right up there with my own, 12 of 12 cores - 4 to 70% PCa - G 9 - not detectable outside of Prostate. So much of the prostate is cancerous, it was recommended to me that the EBRT be administered first to the pelvic cavity (get those little buggers that might be out of the prostate, but we can not detect) and then target the prostate for the second half of the procedure. It was also recommended that I have three years of ADT. After one year I requested that it stop.
So, back to these three treatments. Have you done your research and discussed with your oncologist what he thinks each of your recommended treatments will accomplish? Each case of PCa is very different, so it is important to understand why each step of your treatment is recommended. If you could eliminate one of your recommended treatments, you would have one less set of side affects to deal with.
If at all possible, use an EBRT/IMRT ultra-sound guided facility, that way what ever size your bladder is they can adjust the beam targeting. As for the ADT, try to get the lowest amount per shot or pellet insertion.
I had four Lupron Depot shots, three months apart over two years ago. The shot sites still hurt, at one point so bad that I could not sleep or exercise. After much complaining, I got a cortizone shot which allowed me to walk and ride my bicycle again, plus sleep. It is about time to get my second shot because, both side ache again. I think that the stuff they injected destroyed the surrounding tissue, i.e. less injected material, less damage.
I also had many ADT side affects which I found very difficult to deal with, but the tissue destruction was the worst. The EBRT was also very difficult for me. It has been over 2.5 years and my quality of life has been very poor. Perhaps my organs were just in the wrong places. I know that the prostate was/is tucked up into the bladder. In April this year, voiding became painful. Appears that the urethra was damaged and the only treatment is a pain management program.
I wish you the best of luck, I hope the hands that administer your treatment are steady, experienced, and true.
Keep us informed of how you are coping,
Joe, Hamakua Coast, I love it.

Re: ADT side effects

Since you are having so many problems with the ADT you might consider switching treatment to a prostatectomy. (I haven't read of anyone dying from prostate cancer within 10 years of getting their prostate out) You can get the operation and then watch your PSA level afterwards to see if it starts to go up using ultrasensitive testing. If it stays below 0.2 then you are off the ADT.

If you don't want to change treatments then try the 3.6 mg Zoladex (every four weeks)like Joe suggested. It seems to cause fewer problems and your testosterone will come back in about 8 months instead of 16 months after the last injection according to one research paper. Also make sure you exercise as often as possible. It takes all my will power to get out there some days and some days it is not enough.

For me the biggest problem was the hot flashes; I'd get them about every 90 minutes and so I could not get a good nights sleep. It was like looking after a new baby. If you suffer from depression (who doesn't after being told they have cancer)and hot flashes you can get a drug like Prosac that should eliminate the hot flashes and help with the depression.

Re: ADT side effects

Frank and all,

I am not sure that Surgery is the best option for a Geason Score 9 diagnosis, although some of the men who have shared their experiences on the site have made that choice. And, since we have no other information from Warwick, it may be that Surgery is not a suitable option for him personally due to his age, his physical condition or other issues. By chance there is a piece on The New Prostate Cancer InfoLink today on the subject of surgery with high Gleason Grades which concludes:

What this study does suggest to The “New” Prostate Cancer InfoLink is that the higher your risk for progressive disease at diagnosis, the greater the care you should take to ensure that you find a highly experienced and skillful surgeon — if surgery is your treatment of choice. And we suspect that the same general rule applies to nearly every form of first-line treatment for prostate cancer.

But the main reason I wanted to respond was this statement in support of surgery:

I haven't read of anyone dying from prostate cancer within 10 years of getting their prostate out

You don't have to look too far to find examples of this sad event - we even have one example on the site. The late ALAN BACON didn't make the ten year mark after his surgery. And if you read up on some of the relevant studies you will find that he is not alone. Perhaps the most well known study - because it is one of the longest is the Swedish study often referred to as the Bill Axelson study which compared surgical outcomes with the outcomes for men who chose what was then termed watchful waiting.

In that study 8.6% of the men who had surgery for PCa were reported has having died of the disease in the median period of 8.2 years after treatment. So it does happen.

In relating this it is not my intention to alarm anyone, but I do think it is important, when weighing up what do do that each one of us should have access to the best information available (which is often not easy to find and sometimes misleading) and not neccessarily rely on what people say they believe.

The Bill Axelson study ultimately came down on the side of surgery over WW, although initially (over the first 10 years) there was a significant difference in the disease specific mortality (more of the men in the WW arm died of PCa than in the surgery arm), there was no statistical difference in the overall mortality rate (about the same percentage of men died in each arm from PCa and other causes).

After 20 years the difference had widened and although some of the surgical men were still experiencing failure as evidenced by rising PSA, their disease specific and overall mortality rates were some 25% lower than the men in the WW arm of the study.

Of course, there weren't many men left in the study after 20 years - as Willet Whitmore said Growing old is inevitably fatal, prostate cancer is less so.

All the best

Terry in Australia

Re: ADT side effects

I thought of Alan when I wrote that line. He actually died of Bacterial Meningitis but I would agree that prostate cancer might have killed him within the 10 years if the Bacterial Meningitis hadn't.

Other than Alan though, no one else has on this site that I could find.

Re: ADT side effects

Aloha Frank,
When your G score is 8 or 9, the chance of the PCa being outside the prostate is high. Surgery will not get all the cancer in these cases. So, if you are going to use EBRT to kill these starting nodes (not detectable) then you might as well just do it all in one shot. Doing both surgery and EBRT just increases the side affects. The over all goal of PCa treatment is to kill the cancer with minimum side affects.

Re: ADT side effects


This site only represents a very small fraction of the million plus men living after they were diagnosed with prostate cancer, some of whom chose to have treatment, including surgery. There are only 43 stories from men diagnosed prior to December 1999 and only 16 of those chsoe surgery, so that is a very small data base.

I was merely responding to your statement that you had not read of anyone dying within ten years of surgery and trying to show you that even in this small data base there is one case, while, as shown in many studies there are more such cases in the general, diagnosed, population.

As Bill G says, there is an inherent bias in any study on the outcomes of therapies because of extraneous factors such as stage, age and other health issues.

There is no long term study that I am aware of that shows any specific therapy to be superior to another. Treatment should be chosen to match the diagnosis, or as Dr Strum says - ASSESS STATUS BEFORE DETERMINING STRATEGY

Terry Herbert

Re: ADT side effects

The paper I was thinking of is "Radical Prostatectomy For Clinically Advanced (cT3) Prostate Cancer Since the Advent of Antigen Testing: 15 Year Outcome" British Journal of Urology International 95, 751-756, doi:10.1111/j.1464-410x.2005.05394.x.

In this retrospective study from the Mayo Clinic of 841 men going in with cT3, 90% were not dead from prostate cancer 10 years after their prostatectomy. Presumably life expectancy is a little better now which would lead to my observation that I don't know of anyone that has died within 10 years of getting their prostate out including the large support group I attend.

I am not promoting surgery, I just suggested it as an alternative to getting the hormone treatment that was causing a lot of problems. I completly agree that I would be looking for the absolute best sugeon I could find to do the operation if I was to get surgery given the pathology.

Re: ADT side effects

I think the suggestion for surgery is based on a faulty reading of the statistical situation. Those who are treated with surgery are typically those with a fairly early stage cancer. Thus their outcomes will look statistically better, just because they are getting treatment for milder cases. You should stick with the treatment that is most appropriate for your particular case.

Re: ADT side effects

Joe thank you for your reply, the first urologist, who also did my biopsy, was not keen to operate and sent me to an oncologist for a second opinion, after 1 3/4 hours with this man where he painted in plain and concise language what I faced, the options and the outcomes, I went home to chew over for the weekend as to the treatments available and the consequences of the various treatments. I decided to take the ADT, bracytherapy HDT & EBRT as this seemed the best way to kill all the cancer, my CT scan and bone scan was clear. The oncologist agreed with my choice and that in his opinion this would achieve the best outcome.
I have yet to see him again as to the necessity of ADT for 18 months, this opinion was given to me by the 2nd urologist that I saw, he is the one that will be doing the bracytherapy.
The side effects of the ADT if I know the mood swings will lighten or desist with time I will tough it out, the general tiredness? or lethargy? I can endure,the joint pains I have to wait and see if they worsen I train 4 nights per week, I hold a 3rd degree black belt in martial arts and instruct 2 nights per week the other 2 nights I am a student of ju jitsu, I am 64 years of age. Diet reform is something I went into almost immediately and feel that this has helped somewhat if only to give me a focus on something apart from my fears and woes.
I have yet to travel as far down the road as you have and can't help but be aprehensive as to what may happen to bladder and bowels, of course I have utterly no libido nor erectile function, this has not helped with those bloody mood swings, I do miss those intimate moments with my wife.....sorry just had a mood swing... must go now

Brisbane Australia

Re: ADT side effects

Aloha Warwick,
You've done your homework.
Exercise has/is playing a large part in my recovery. Hope you have understanding friends.
Hang in there,