HealingWell
Search Close Search
☰

proton beam therapy

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/25/2008 2:00 PM (GMT 0)

Hi All,

I am new to this site and am hoping that someone has some information on proton beam treatment.  My fiance, Ron, was diagnosed about 3 weeks ago with prostate cancer.  His biopsy was positive for 3 of 12 samples.  Gleason was 3+3.  The options his doctor gave him were surgery and radiation seeds (probably not using correct terminology).  We are really concerned about the side effects.  Someone told him about proton beam therapy, which from our research, claims to have less side effects and similar success rate as surgery or radiation treatments.  There are very few places that offer this type of treatment.  He has sent his records to both Loma Linda and MD Anderson, where they are in the screening process to see if he is a candidate.  Everything we have read and heard just claims "less side effects."  I am sure once he gets info from LL and MD Anderson, they will have more side effect info.  Just wondering if any of you have more info.  Thanks!

P.S.  Ron had a heart transplant 5 years ago.  Not sure how the meds he has to take for that will impact whatever treatment plan he chooses.

Posted 9/25/2008 5:26 PM (GMT 0)
Hi,

There are a few of us here who have chosen Proton Beam Therapy. It's been almost 3 years post treatment.
The side effects are much lower compared to surgery from what I see here and what I have experienced personally. Same with the hundreds of men I met during treatment at Loma Linda. I cjhose it for quality of life.

There is an excellent thread by Dave, here. https://www.healingwell.com/community/default.aspx?f=35&m=1002871 Also check the testimonials at protonbob.com.

Ken
Posted 9/25/2008 5:35 PM (GMT 0)
Ken, thanks so much for your reply.  Can you tell me exactly what side effects you or others have had with the proton therapy?  We just haven't been able to find anything other than "less side effects" than surgery or traditional radiation.

Posted 9/25/2008 6:01 PM (GMT 0)
Side effects for me and many others are frequent urination during treatment tapering off afterwards. Some have minor bleeding from the rectum which doesn't last long, but not usually. I had no problems there at all. The balloon and lots of water usually spares the rectum. Later on I developed some scar tissue in the urethra which had to be opened up. Minor operation. ED is usually not a problem. Dry ejaculations happen no matter what proceedure is done.

Ken

Posted 9/25/2008 6:23 PM (GMT 0)
Ron wanted me to ask this question: If insurance reimbursement, travel costs/time, etc. were not issues, would any of you have chosen proton therapy over opting for more traditional treatments. Thanks!
Posted 9/25/2008 6:37 PM (GMT 0)
I know with me those things were not at issue. It was a matter of looking first at what had the greatest potential for cure and especially long term. Now, everyone's situation is different, and so is everyone's diagnosis. I think you are on the right track of gathering information. I have heard good things about Proton, but I do not know anything personally about it. I would suggest you read the responses to my struggle on this issue back on about page 13 "Between Radiation and Surgery." Although not about Proton, some of the same issues are the same, and there are some great responses from those with a lot of different experiences.

Good luck to you - you will ultimately come to your decision, and I am confident it will all work out to your favor.

RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04
Posted 9/25/2008 6:41 PM (GMT 0)
Hey Ron's Fiance,

Sorry you and Ron have to be here but you will get the experiences of those who have been through treatment.

I chose surgery because I wanted the cancer out of me, wanted a definitive pathology report so I knew where I stood and wanted to keep future options for treatment open in case it came back. I was dry the day after the catheter came out and have an active sex life with the help of Viagra (generic) and Trimix injections.

We all make our decision based on our desire for a better life after cancer. For me the priorites were: 1) kill the cancer, 2) get dry and 3) have sex in that order...

Jim
Posted 9/25/2008 7:32 PM (GMT 0)

....my reasons are pretty much dead-on just like Biker's.....my age had something to do with it as well. I couldn't be  happier at 71/2 weeks out.....like so many before told me, research and educate yourself as much as possible, and then..... make your decision and don't look back...

Posted 9/25/2008 10:57 PM (GMT 0)
I struggled with the decision.  I wrote up my research and decision process.  I WANTED Protons to be the right answer for me.  I actually cried when I called Loma Linda to cancel my appointment.  Cost, distance, and time were not the deciding factors.  Protons were covered by my insurance.  I have hundreds of thousands of frequent flyer points in my airline account, and a supportive spouse who said she would manage and bring the kids to visit if I had to be at Loma Linda for 3 months.  I had selected an apartment that would have been suitable for working remotely near the hospital.  I was all set.

Then I met my surgeon, one of the premier Prostate Cancer surgeons.  In an hour consultation with him, it was clear I was going to do surgery.  I was scared of the outcome and risk of incontinence and ED at 41, but the fear of still having a prostate as is the case with radiation that carries the chance of getting the cancer again with limited options post treatment didn't make sense for me.  And this was assuming that the Proton Therapy was successful.

That being said, had I been older with other competing health issues that complicated surgery, it is certainly a viable option with seeming good outcomes and less risk of serious side effects.

So research, weigh the pros/cons, and follow your gut.  Intelligence and a good decision making process will lead you to the right answer.

Good luck with your decision.

Posted 9/26/2008 1:37 AM (GMT 0)

41diagnosed said...

but the fear of still having a prostate as is the case with radiation that carries the chance of getting the cancer again with limited options post treatment didn't make sense for me.  And this was assuming that the Proton Therapy was successful.

I have a question about this.  When I shared my concerns about not having any options should I develop Prostate Cancer after radiation treatment, I was told there were many option.  The Cryosurgery (Iceballs) can be used to destroy the prostate, there is heat (don't recall the name) and salvage surgery is a viable option as well.  Was I given bad information?

Posted 9/26/2008 1:54 AM (GMT 0)

"as is the case with radiation getting the cancer again"

There is the possibility that any treatment will not cure your cancer.  You may get it again with surgery, or seeds, or proton, or radiation.  Or, you may not. 

Google is your friend. 

Proton is great.  So is Image Guided IMRT.  Google IGRT and IMRT.  Check out protonbob re: proton. 

This is a great place with great folks, but most of them are surgery guys.  They are biased toward their choice of treatment.  As they should be. (As am I.) Your urologist is a surgeon.  He does surgery.

I suggest that you do what you want to do.

Regards,

Bill

Posted 9/26/2008 1:07 PM (GMT 0)
I am going to step in here. I agree with Bill, we all have our prejudices. I also struggled over the issue of radiation or surgery. I think when it came right down to it, after all the research, it seemed that surgery was the ultimate effort to achieve a cure. What I mean by that is that I felt if I had radiation I would always wonder how involved the cancer was in my prostate - always be living a little more on the edge. I wanted to know if I had negative margins and a pathology report was the only answer to that. Now, I understand regardless it can still come back under any treatment. But, it can be argued that if it does come back you have better options with surgery than with radiation.

This whole issue is extremely tough. The doc's who do radiation will preach it, and the doc's who do surgery will preach it. So will all of us who had one or the other. I had one non-surgeon urologist tell me that it was 6 of one and a half dozen of the other. Either way it should come out the same. I also have a doctor friend who is not a urologist who told me I should not be afraid of doing radiation (back when I was making my decision). So if I have further confused you, I am sorry. I know your difficulty in wrestling with this - ultimately we all have to make our decisions and then live with them. Blessings.
RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04
Posted 9/26/2008 1:47 PM (GMT 0)
Thanks to all of you for your thoughtful responses. I have been involved with family members and friends with other types of cancers, but there didn't seem to be so many options. I guess having so many options is a good thing, but makes "wrestling" to make a decision very difficult.
RB, I have a follow-up question. What was your experience with the DaVinci surgery as far as side effects?
Posted 9/26/2008 2:52 PM (GMT 0)
The surgery itself was almost nothing from a pain standpoint, and I was up and around almost immediately. All of that part was really relatively easy, and ongoing I have had no pain or system distress. I work out hard, and have returned to normal living.

As with everyone that has surgery, I have incontenence, and ED. The incontenence has improved to a point of near dry most of the time, but I am still not completely there. It is kind of like having a leaky washer that ocassionally drips. Thankfully, this too with the modern convenience of pads is not a big deal. ED - the long term effects are not known by me yet. To further complicate my situation, I had a 4 month Lupron shot, which I am really just getting beyond now. From what I can tell by others, most of us recover on ED, if we do, very gradually. Most of my nerves were not spared as my biopsy was unclear if it had spread, and so the doctor felt he had to cut a little wider margin. I am still very positive about all this because there are also aids and remedies for ED as well, and I fully expect to get back into the game. I have not explored any of that yet simply because I think it is too soon for me. I will be addressing that soon. For now though, there is no action down south, and I am content with that and my wife of 38 years doesn't seem to love me any less.

RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04
Posted 9/26/2008 3:44 PM (GMT 0)

Hi...I'm a new member also, having lurked and read postings for the past couple of weeks.  I can appreciate what you're going through, as I was diagnosed two weeks ago, T1C, Gleason 4 +3, 2 of 16 cores.  My wife and I have pretty much spent 24x7 on the internet as well as reading Walsh's book and going to various docs. 

Re proton beam, I have had the same experience as you as the claims are for "lower side effects".  After talking with a radiation oncologist friend, as well as the radiation doc to whom I was referred by my urologist the answer I've gotten is: "the lower side effects were true even 5-6 years ago, but with the improvements in other types of radiology and surgery, that is probably not true today".  In the absence of any clinical trials or current proof, and not withstanding the anecdotal evidence provided by www.protonbob.com, I have personally come to the conclusion that proton beam is no better or worse than the other options...that may or may not be factual, but that's where I am so I have eliminated proton therapy from my list of options.

FYI, since you are concerned about side effects, there is an excellent ariticle in the New England Journal of Medicine, www.nejm.com, March 20, 2008, entitled "Quality of Life and Satisfaction with Outcome among Prostate-Cancer Survivors".  It costs $10 if you are not a NEJM subscriber, but it is well worth it to have up to date info on this important issue.

Finally, I still have not made a final decision...but, I'm down to 2: brachytherapy or robotic surgery.  I have found docs who have done over 500 of each procedure respectively and I'm confident that whichever one I decide on will do it well.  Frankly, I'm leaning toward the surgery...I have always told my daughter that OPTIONS are important in life.  The fact is that if, God forbid, the cancer is not completely cured by the first procedure, there are more options later if you have surgery first rather than radiation.  Anway, I'm still mulling it over...

Good luck as you work your way through this.

Posted 9/26/2008 4:14 PM (GMT 0)
There are more options than just radical surgery and radiation. There's also HIFU although it's not yet approved for insurance in the USA. Along with cryotherapy be it done to the entire prostate or targeted focal treatment like I received. Although the latter is a clinical study being done here only. It's true most of us are advocates for the treatment we received if it was successful. Thus I'll state mine seems to have the least amount of side effects. In my case there has been no incontinence and ed has faded after what my doctor prescribed a "kick start" to the nerves with viagara. On ED, cryosurgery there I'll guess is like radical surgery for it depends on how close to the nerves it takes place. I was told the freezing wasn't too close to the nerve bundles which were monitored during the freezing process. Also if cancer returns all options are available.
Tell Ron to take his time deciding, there are no do overs afterward. I know it's overwhelming at times. That's when I recommend he take a few days off and just put it out of his mind the best he can. When he does opt for a treatment I also recommend before finalizing take a week to reflect on it. Then after that go ahead without second guessing yourself. His heart transplant needs to be taken into account I assume too. I have no idea how that may or may not have an affect on the treatments
Posted 9/26/2008 5:12 PM (GMT 0)

Well, nothings changed. A question about Proton Therapy and mostly answers from surgery patients about how they have to have it OUT. That's fine if that's the way you feel, but are you influenced by most here that have stated that?

When you're sitting down with a Surgeon, that's what he's trained to do and what he will recommend. Of course it's money out of their pocket if you go elsewhere. Some have just walked out of the room and refuse to discuss it when someone mentions going another way. Most don't really know much about any of the other options except what they've heard and have not done any indepth study. They've called protons "Black Magic" and experimental after more than 15 years and 15,000 patients That are very happy with what they chose.

As far as doctors pushing their proceedure, you won't find doctors pushing Protons as they're are long lines of men waiting and not too very patiently. You will find a whole lot of guys who have been through it,  pushing. Just like me.

Out of all the men I know, and that's a lot, who have had proton therapy, not one has any regrets. Can't say that for surgery.

Anyway, off my box. I just get very sad hearing a lot of misinformation and the problems that a lot of guys have after "getting it all out"

Posted 9/27/2008 12:33 AM (GMT 0)
My husband had seeds and conformal radiation...plus lupron for one year after.....We were happy to have it hopefully taken care of, and after four years , he was finally getting his ED under control....then the PSA started rising. We went for salvage surgery....A devastating surgery after radiation that I would not advise anyone to have.....Because of the radiation four years before, he got a fistula...a connection between rectum and bladder, needed another operation for that, a catheter in for one year, many cystoscopies because of scar tissue closing up....and then complete incontinence for one year....He just had an AUS implant 2 weeks ago.... plus, the psa is rising again......Now he tells every man he meets to have surgery and get it out.....But this is just one more story. There are many others on the other side that could say the same thing about surgery probably... Di
Posted 9/27/2008 2:43 PM (GMT 0)

KenW said...
Well, nothings changed. A question about Proton Therapy and mostly answers from surgery patients about how they have to have it OUT. That's fine if that's the way you feel, but are you influenced by most here that have stated that?

t all out"

I know I'm in a small minority here, but along with a few others I have corresponded with, this site really turned me OFF to having radical surgery. I was seriously considering it until all the horror stories on the after effects. I know many here have had few or short lasting ones too, I acknowledge that. But one must weigh quality of life versus possible longevity. If I was in my 40s I probably would lean towards radical surgery, If I'm in my 70s if I could I'd do nothing or if I had to, radiation. I personally would not want my last years revolving around incontinence and wearing pads. At age 59 now it comes down to life style for me. My life has returned to what it was before that surprise diagnosis a year ago. That alone has validated my choice in my personal opinion. But as KenW mentioned this site is heavily weighed towards those who choose surgery. Partly because those who have problems after their treatments post here much longer and more often than those who don't. Take that into consideration.
Posted 9/27/2008 3:04 PM (GMT 0)
Well, another reason I am so glad that I had surgery, a definitive post-op pathology and zero PSAs for the 20 months since surgery is that I have developed lung cancer also. My history with successful treatment of prostate cancer opened up all the possible treatments for lung cancer. I'd hate to have to fight both at the same time even if it was possible. For example, I'm in chemo therapy now for LCa and those meds do nothing for PCa. I doubt they would put me in chemo for a second cancer. Untreated, I was told I had 2 - 3 years with LCa. How long would I have if PCa went stage III or IV?

BTW, the most important thing that happened to me is that my family doctor caught both cancers in their stages. Both are stage II. So get tested. Got cancer? Get rid of it!!!!

Jim
Posted 9/27/2008 4:17 PM (GMT 0)

Real Ziggy,

Glad to hear you are doing well and your psa is .3. Won't it be great when they find out that your proceedure is as good as any and admit it? rolleyes Hope it doesn't take 15 yrs. You are definitely a gutsy guy.

Biker90,

Glad to hear you caught your lung cancer as a result of your prostate cancer and are taking care of it. My best buddy's proton doc found his colon cancer while in treatment. He was at Loma Linda right after me after finding out I had chosen Protons. Now he's clear of both.

Posted 9/28/2008 4:33 AM (GMT 0)

KenW said...
Real Ziggy,

Glad to hear you are doing well and your psa is .3. Won't it be great when they find out that your proceedure is as good as any and admit it? [img]/community/emoticons/rolleyes.gif[/img] Hope it doesn't take 15 yrs. You are definitely a gutsy guy.

Actually my procedure is better than any others so far. I have to restate what tft is. It's like a lumpectomy where only in theory only the tumor is destroyed not the entire prostate. Thus there is never much of a risk of incontinence because nowhere close is the freezing near the urethra, and the natural valves are all still there and working. As far as ED went it was true I've been mildly affected but the viagara after a few times has "kick started" my erections with them becoming harder and some occuring without viagra now. Also unlike most here i don't have dry orgasms, but so far somewhat decreased wet ones. The latter is a nice bonus but my biggest fear was always the possible incontinence. Now with my regular golfing foursome I urinate the least on any given day. One has bph and he always did more than me even when I had Pca.
Radical surgery was always referred to the gold standard when I first started checking on treatments last November. It was, but time moves on, the next step logically has to be just the removal of the tumor leaving the gland intact and working. With the 30 odd tft successes after a year I know of and my experience the past 5 months I firmly believe the tft will soon be the gold standard for those detected early with low risk PCa such as I had. Of course tft's only for those with low risk early detected PCa such as mine. With more screening being done now that's a majority of new diagnosis
Posted 9/28/2008 4:38 AM (GMT 0)

As a surgery guy, let me break the mold, and recommend Proton.

All treatments can have problems, and the problem with radiation is that the side effects can come on slowly, well after the treatment is over. We may well ascribe later problems in our nether parts to "growing old".

By contrast, the surgery has the problems up front and they generally get better with time, rather than worse. Consequently there is no doubt about the cause of the problems, and so the surgery guys will post here. This will all give a misleading impression about the extent of the problems after surgery. 

Also, when I consider the number of prostatectomies done each year in the US (100,000+?) and the small number of people who post here with problems, I conclude that the overall results of surgery must be pretty darned good.

As is often mentioned here, the choice of treatment is a very individual thing. How important is the chance of a "cure" compared with the risk of side effects? It varies with the individual, so there is no one treatment to suit all.

Protons are just not available where I am, so surgery was my best option. However if Proton was available and I could afford it (it's expensive!), I would have strongly considered it. So I'll say it again -- if you have the chance of Proton go for it. 

Posted 9/29/2008 1:12 PM (GMT 0)
This is great dialogue because I think for most the issue of what direction to take is the major event. Once that decision is made all else becomes a policing up action.

Those of you that took routes other than surgery God bless you. I think you are stronger than I am. I had a urologist initially who did nothing but surgery who is now convinced (as many of you are) that radiation was the only way to go. He did everything but call me a fool for not following his advice. I cannot argue whether he was right or not. I even talked with one of his patients who had seeds 9 years ago and the man said he was perfectly happy with the outcomes. What weighed heavily on me was that I had a friend who had seeds back in the mid-90's and the cancer came back on him and got him. Now, I know that was before a lot of the current process was perfected, and outcomes are much better now. Still it weighed on me. On the other hand, I have two friends that had RRP more than 15 years ago with no return. Regardless, I am sure there are some out there that can record stories that are just the opposite.

Well, I suppose with all of us there is a type of justification of what choice we have made in our own mind. Here I am today with some incontinence and ED (less than 5 months out from RRP), but I have no regrets - not yet. I have hope of improvement in both, but even if there is no long term improvement, I don't think my mind would change. My own justification was that I had to give the best shot I could aim at the cancer, and I did buy the idea of the gold standard. I still do, but I may be wrong maybe there is a better shot and I just don't know it or have enough faith.

On the other hand, I am happy for those who have taken other routes such as proton, seeds, freezing, etc.. I hope all these things succeed to the point that RRP will become a thing of the past. Whatever someone decides to do, each person must be convinced in their own situation they have done the very best thing. No one can tell someone else their choice was wrong, nor should we. It is a matter of getting the facts and making a decision.

RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04
Posted 9/29/2008 4:39 PM (GMT 0)

Tony1951 said...

 

I have a question about this.  When I shared my concerns about not having any options should I develop Prostate Cancer after radiation treatment, I was told there were many option.  The Cryosurgery (Iceballs) can be used to destroy the prostate, there is heat (don't recall the name) and salvage surgery is a viable option as well.  Was I given bad information?

 We were told the same thing although not regarding salvage surgery. We also questioned the Cyberknife since my husbands radiologist does that also but he suggested we didn't go that route since my husband is only 53 and there is not enough statistics on it yet. The radiologist has 4 men that did it so far and they are doing well however they are much older.  There is no sure cure on whatever you choose you just hope for the best and go on with your life.

Gail

✚ New Topic ✚ Reply
12