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Proton Sites, Proton Therapy

Trew
Posts: 892
Joined: Jan 2010

There is a proton site in Indiana- here is the address;

http://www.mpri.org:80/

I will add more info on proton therapy as I have time.

-Trew

Trew
Posts: 892
Joined: Jan 2010

Link to Loma Linda Proton Therapy
This site is worth cnsidering:

http://www.protons.com/

Poke around, you'll find a link for requesting info, testimonials, other useful info. This is so much more fun than surgery.

And here is a link to former proton patients worth looking at for sure:

http://www.protonbob.com/proton-treatment-homepage.asp

And Mass General Hospital now has a proton Department- this is cuttng edge tech now being turned on PCa:

http://www.massgeneral.org/cancer/news/multimedia.aspx?id=46

The link above is past their home page. I typed in proton on their search feature and found this link. Proton therapy is new to Mass General. Most proton therapy units are modeled after Loma Linda's- LLU was the first in the US to install and use proton beams to fight cancer.

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AVDuke03
Posts: 10
Joined: Jan 2010

Here is a link to the Proton Therapy Center at M.D. Anderson in Houston. It has been there for 2-3 years.
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/specialty-and-treatment-centers/proton-therapy/index.html

Trew
Posts: 892
Joined: Jan 2010

Well, its not open yet, but it will be- its being built right now. The leading personality in getting this done was a patient at Loma Linda and had proton therapy there. He was so impressed he is bringing a new unit back to Michigan. Here is a news link:

http://www.mlive.com/news/flint/index.ssf/2009/10/mclaren_health_care_to_build_f.html

Proton is so much better than surgery on mid and low gleason score tumors.

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lewvino
Posts: 1007
Joined: May 2009

You hit the nail on the head with your Statement Mid and Low Gleason Scores.
So many think it works for all. My dad had proton back around 1997. They were treating about any Gleason back then as they were learning at Loma Linda. THey now limit it to Gleason 7 or below and then will also mix with Standard radiation.

Larry

Trew
Posts: 892
Joined: Jan 2010

Larry, that is exactly what I observed. I had other PC patients who were also getting radiation after some proton treatment, but they still had their prostates in. But those with mid and low grade gleasons- all proton- all happy campers!

chitown
Posts: 90
Joined: Mar 2010

Larry-You have greatly assisted me in the past so one more request.
Am 48 and atheltic, 3+3 Gleason, 6 of 16 core positive. Am set for da vinci but have an open mind. What would you suggest? Should I explore?

Trew
Posts: 892
Joined: Jan 2010

I'm not Larry.

But you can see the growing number of proton centers being built and they are not cheap. These centers are NOT being built on a whim of fashion. There are very good outcomes behind proton numbers. And proton patients are left whole- complete! And generally happy, continent, and sexually whole. No important parts missing.

I would recommend you get Robert Marckini's book from Loma Linda U- call their proton center info line and request the book and dvd they send out and read the book. Check out some testimonials. Surgery isn't the only option for treating PC.

Right now, on the post directly below there is a link to MD Anderson- no fly by night place- but one of the top notch cancer treatment centers- and they are committed to proton therapy which in itself is quite an endorsement.

I think all the proton centers now up and running in the US are listed on this thread about proton centers and treatment- so you have a lot of places to look into.

While at LLU I met a man who walked out of his urologist's office 3 or 4 days before surgery and came to LLU. This surgeon was a bit angry and told him to never come back to see him, but he didn't care- once he considered the risks and after effects proton was the choice for him.

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lewvino
Posts: 1007
Joined: May 2009

chitown - I'm no doctor just another prostate cancer brother. 6 of 16 core's imply to me the cancer is in several places. Did they see it in just one particular side or quadrant?

You ask if Proton is an option and yes it would be. If I were you what would I do? That I can not answer. I looked at Proton and Davinci, My dad had Proton and is doing great 12-13 years since his treatment. However I settle on Davinci even after having all my records sent out to Loma Linda and speaking with them 4 times on the phone.

At 48 you should have success with either treatment. What is important to you? After Davinci you will not have any fluid during orgasm. Does that matter? My wife likes it with no mess! That is some what different but getting more used to it.

I'm at 8 months post surgery (age 55) Have used only 1 pad since surgery. That is not per day that is 1 pad total. I Get a pretty good erection with Levitra 20mg (Not as good as presurgery) not complaining since the Doc said the cancer was in some of the erection nerve bundle and he took about 40% of the erection nerves on the one side. Last night was a blast by the way! Wife about kicked me out of the bedroom!

Good luck and keep us updated!

Larry

Trew
Posts: 892
Joined: Jan 2010

I had De Vinci surgery done by Dr. Joseph Mashni in Lansing Michigan at Sparrow hopital on Marrch 23, 2009. I have not had a day without pads since. I was down to about 1 pad a day before rad and a pad at night, but started having problems after rad. I am back down to about 1- 3 pads a day a a pad at night right now.

Guys like Larry are so fortunate! But I know not every surgery turns out that way.

That is why I wanted proton therapy, but even Loma Linda advised me to go ahead with the surgery when they looked at my stats. It seemed then I had no options left so I went as a lamb to the slaughter.

Trew
Posts: 892
Joined: Jan 2010

MD Anderson has a nice page on their proton center.

http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/specialty-and-treatment-centers/proton-therapy/index.html

Proton treatment takes time, and is expensive. You need housing while you are away for treatment. So what? Look at what you are keeping with proton treatment! No surgery. You get to fire real "bullets" after treatment, no blanks, Ed is minimaul, so is incontinence.

Surgeons always prefer surgery over proton treatment, except for one guy I met at Loma Linda. Whenhe asked his surgeon what he would do if the Doc was in his position, the Doc told him he would go to LLU and get proton treatment. That was enough for that PC patient- he contacted LLU and got the proton treatment.

Treatment is usually 9 weeks- 2 1/2 months and look at what you save.

I see AVD has posted the same link above- I read his post earlier and then forgot about it. Eligard affects the momory. But this is worth posting twice. A big prestigeous cancer center like MD Anderson believes in proton Therapy, too.

Do the research guys.

Trew
Posts: 892
Joined: Jan 2010

Here is a new proton treatment center in Florida called the University of Florida Proton Therapy Institute

http://www.floridaproton.org/

This is a growing trend in the treatment of prostate cancer. More of these centers will be showing up in the years ahead and more and more men will be opting for proton therapy than surgery.

On this site there is a link to proton therapy by a leader in proton therapy.

http://mediasite.video.ufl.edu/mediasite/Viewer/?peid=7a3ec6851c4145389688ea45878f62ca

This is worth listening to, especailly abut 20 min into the presentation where the Dr begins explaining how proton therapy works. Very good. The doctor does a nice job explaining the difference between regular radiaiton and proton treatment. Very important information.

As proton patients know, proton therapy can be set to stop at a certain depth, with little spill over to other tissue. The tumor is hit direct like a rifle bullet (my definition now- not his) and the tumor gets killed, surrounding tissue survives. Do not think radiaiton and proton treatment are the same. They are not.

Swingshiftworker
Posts: 634
Joined: Mar 2010

FYI, I contacted the U of Florida Proton Therapy Institute.

They sent me an info packet and a FREE copy of Marckini's book. The book is definitely biased towards proton beam therapy and is a puff-piece for Loma Linda U. where Marckini received his treatment. But, it's a good read and gives a lot of info about proton bean therapy in general and the treatment experience at Loma Linda in particular.

Thought it was odd that the U of Florida would send out a book promoting treatment at Loma Linda to a guy in CA, but I guess they've got enough profit margin in the procedure to send out copies of the book to potential clients where ever they can find them.

Trew
Posts: 892
Joined: Jan 2010

Loma Linda was the pioneer in Proton therapy. Other proton centers learned about protons from LLU. the fact that other proton centers are being developed is evidence that the early stats is very good. If the stats were so/so other centers would not be spending their $millions to build new units.

Marckini's book is about his treatment at LLU but it would also apply to all proton centers. U of Florida canprobbly give the book out because they know that housing is an important part of treatment and they probably won't lose too many patients now to CA.

Trew
Posts: 892
Joined: Jan 2010

Orlando is also getting a new proton treatment center. The link is to an article annoucing the plans of MD Anderson to build a new proton center at their Orlando facility. The article says there are now 7 such centers in the US.

http://orlando.bizjournals.com/orlando/stories/2010/01/25/story2.html

A new one is now on track for Orlando, and as I mentioned above, one is being built in Flint, MI. That will bring the number to 9. This is good news for prostate cancer treatment.

Trew
Posts: 892
Joined: Jan 2010

One of the reasons I started this thread is because there is a heavy tilt here towards the surgery side of treatment. Men need to know there are other options. Robert Marckini who wrote the book You Can Beat prostate Cancer and you don't Need Surgery to do It began treatment at Loma Linda U medical Center in 2000 for his PCa. He is still a strong advocate of Proton therapy- with no after effects. While I was there for radiation in Dec/Jan 09/10 he came into LLU to talk to one of the support groups. I did not atend his talk, but he is still very much a pro-proton advocate almost ten years after his treatment. What pushed him to proton was seeing his brother come out of the gold standard surgery with tubes attached and the pads and all and Bob determined if ever he got PC he was not going the surgery route. You can request Bob's book free from LLU- just go on their web site and click the link requesting information. LLU will send you the book and a DVD on the procedure.

Balance, brothers, its all about balance! Surgery is not the only option.

Swingshiftworker
Posts: 634
Joined: Mar 2010

I read Marckini's book (which I got free from U of Florida)and, as I recall, he didn't say that there are NO after effects from proton beam therapy.

He mentioned urination urgency and a slight burning feeling during and for a short time after treatment, as well as some bleeding from his rectum about 1 year after treatment and some blood in his stools for 18 months following treatment, which diminished gradually over that time period. On the positive side, he reported no ED (for him) and a consistent reduction in PSA level (with one upward blip which is not uncommon) down to below 1 in 22 months. See pages 129-131.

These after effects beat the heck out of what happens after surgery -- ED for up to 2 years and incontinence for up to 1 year are just the tip of the iceberg for surgical problems w/the alleged "gold standard" of DaVinci laproscopic prostate surgery.

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lewvino
Posts: 1007
Joined: May 2009

Honestly as I have mentioned on other threads I really thought I was going with Proton. Then ended up with Davinci Surgery and happy with the results. Also There are problems with Proton and I know this first hand from my father and a man at the church I attend. My Dad had Proton back in 1997 (Loma Linda). Doing well but he still has very frequent need to urinate and has lost erection ability. Also at times will still get some mucus discharge.

The other man at Church had his Proton about 3 years ago (Loma Linda). He has since developed bladder cancer which he was told they are finding is 'common' after Proton treatments. Not sure on the correlation yet...Is it related to Proton or to the Prostate cancer but at any rate Loma Linda told him they are seeing more of this occuring.

I firmly believe that Proton does have a place for certain types of treatment but is not a 'cure all' for all men. Even Loma Linda told me I was a 'borderline' case for them.

My dad has tried to contact some of the guys from back in 97 in his treatment time frame and the majority have died. Remember though that back in 97 they were treating some very severe Prostate cancers with Proton as they were learning how effective it would be. My dad's cancer was found early and low Gleason.

I also watched a video on the web out of Florida Where a man had Davinci after Proton. It was interesting to see how much 'scaring of tissue' there was from the Proton beam. I believe this was a video from Dr. Patel (Is he in Florida?) They kept pointing out in the video the scar tissue and that it was an extremly difficult surgery due to the scarring.

Best wishes to all on deciding the treatment that they will follow regardless if it is watchful waiting, Surgery, Radiation, Proton, Seed implants, hormones. Gee what a plethora of choices we face with this cancer!

Larry age 55 Davinci in Aug. 2009

Trew
Posts: 892
Joined: Jan 2010

When I finally got diagnoised and all of my material in to LLU they told me to go ahead with surgery, too. My gleason was already a 4+4 and ended up a 5+4. Proton works best for men with mid to low gleasons.

RE the ED problem, it should be noted that older men naturally have ED problems even without being treated for PC. All those Cialis and Viagra commericals aren't just for PC patients. We sometimes forget this important fact. What works well at 60 may not be working so well at 75 naturally. And note, most of the ED and incontinency problems discussed on this borad are after surgery- NOT after proton treatment.

And Larry, as you point out, there are options.

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lewvino
Posts: 1007
Joined: May 2009

Best wishes to you Trew. When did you have your surgery? Have you needed any follow up yet with the Gleason 9?

I used to joke with my wife (Pre prostate cancer) Well at least I don't have a need for those TV ads! Well now I'm glad the little pills work!

Larry

Trew
Posts: 892
Joined: Jan 2010

Larry, I had De Vinci surgery in Lansing by Dr. Mashni on March 23, 2009. On march 30 I had the cath removed and got the path report. Dr Mashni informed me I had positive margins (bladder neck invasion) and would need radiaiton. That was the last time I saw Dr Mashni. 3 weeks later in April I got my first hormone shot. Basicly, on a life changer trreatment, I was given no overview what the shot was for, or the side effects. This was the office PA who basicly said,"You are going to get a shot today, lay down on the table and the nurese will come in and give it to you in your stomach." That was my intro to my 1st hormone shot. the emotional impact of the shot hit me hard and with no preparation for what was coming. I went off to Loma Lina in November and finished 15 proton and 24 radiation treatments on Jan 15. Came back from CA for my first appointment in early Feb- still no Dr- just the PA. I am scheduled to see Dr. Mashni on April 22 for the first time in 13 months and get my 3rd 6-month shot of Eligard. All that for a T4 stage cancer.

I am hoping the radiation finished off the cancer- hopeful thinking, but the eligard is powerful stuff and my PSA is still holding at .01. I am thinking seriously about changing doctors but I am uncertain if it is a wise thing to do at this stage of treatment or if another doctor would want me as a patient. Dr. mashni was highly recommended to me and that is why I had him do my surgery but it has not been what I expected.

I am still leaking, but that is because of the radiation and the steroid treatment I was on after radiation for bladder swelling. I was about 98% dry before radiaiton except when I was very active or backpacking.

With some PC patients it seems everything just falls into place perfectly. That has not been my case. Sometimes things just don't turn out like we hoped or planned.

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lewvino
Posts: 1007
Joined: May 2009

What a rough road you have been down. There were two basic reasons I did not go with Proton.
1. Insurance denied even on appeal
2. Borderline decision on my treatment with Gleason 4+3 7. I Did have a positive margin in right appex but doing OK so far at 7 months post surgery.

My wifes brother actually works at Loma Linda in their computer area as a DataBase administrator for the tranpslants that are performed so I am very familiar with the hospital plus my dad being a patient out there in 97. (My wifes brother Started with the Heart Transplant team but he now keeps stats on all the transplants)

I had made arrangements to stay with my Wifes Brother if I had the Proton treatments. I was a little turned off by the financial aspect at Loma Linda when I found out that my insurance wouldn't pay. Loma Linda was 'we will finance treatment' but at 24 month payment plan auto deducted from your account - No if's and's or negotiations about the 24 month repay plan.

As you say sometimes things just don't turn out like we hoped or planned!

I remember now reading your post about the 'shot' with no warning.

Larry

Trew
Posts: 892
Joined: Jan 2010

From missed PSAs right on down the line, it has been one missed step after another. You could say I am getting a little spooked by now.

And what I know about The Shot I picked up from the internet- not one word from my doctor's office. Back to see the PA again in July 09 for my next 3 month blood draw and check up I mentioned to the PA I was getting hot flashes and my testicles were shrinking. The PA srugged off the hot flashes and told me the other was my imagination. That was the end of his credibility in my mind. I know smaller when I see and feel it. When I got to LLU I mentioned casually to my LLU Dr's nurse I was a little forgetful. "That's the Eligard," she told me. The internet verified that fact. So it has been.

When I see Dr Mashni in April I will tell him, no more PA, I would rather see no one.

My first doctor in Battle Creek didn't even look at the 3rd page of my biopsy report and completely missed the 4+4 gleason- how does a doctor do that? When I got home I called his office and asked about the missed score on the 3rd page- could I please get a return call/explaination. I was ignored. That is why I went up to Lansing and Dr Mshni. and so it goes.

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erisian
Posts: 109
Joined: Dec 2008

Oh, did we forget to mention the side effects?
Interesting to hear that I wasn't the only one who was not told ANYTHING about the side effects from hormone therapy. The doctor said nothing, and I did not receive a drug information sheet or any written info at the time. Then later, when all these weird things start happening, I find (from the internet) that these are all known side effects. Hot flashes, crying fits, loss of muscle, loss of libido, impotence, shrinkage of testicles, shrinkage and deformation of the penis. But you won't find shrinkage listed in any of the "official" information. I guess if they told patients prior to starting treatment, a lot of them would refuse to do it. And it's not like these side effects only happen to a small percentage. If you're on this stuff for long enough, they WILL happen.

I've learned to ask a lot of questions and to ask for detailed, specific information on any new drug they want to try on me. If you don't pester them for info, they won't volunteer any. The Lupron isn't the only drug that I didn't get info for when I started treatment with it. High dose dexamethasone was used during radiation treatment for a bone met. They didn't bother to mention that it might make me psychotic, so when I started getting psychotic, we didn't immediately connect it to the dex. My wife thought I was losing my mind, which I was, of course, but we had no idea that it was drug-related. Due to the lack of information, it took much longer than it should have to get the problem taken care of, and it caused a substantial amount of suffering, not only for me, but for my wife and others as well.

Trew
Posts: 892
Joined: Jan 2010

Erisian, we are brothers in this. When I get to my doc's office in April I plan to discuss all this with him. I am a real person- NOT somehting simply being processed. I have real emotions, real feelings, and thehormone treatment was really set them on edge. One could never imagine unless they experienced it.

A good friend had radiation at U of Michigan combined with hromone therapy. Before his first shot, he told me, this oncologist told him what he was going to be getting, why he was getting it and what to expect as side effects. So when the mood swings and crying hit, he was not taken by surprise. I told him about my experience and he was, "Trew, that is terrible! The shot is a life changing experience and to give the shot with more advanced warning of what to expect is just terrible! If with the warning, yu can't imagine what's coming until you get into it." Very true.

Trew
Posts: 892
Joined: Jan 2010

I have a son who lives in Yucaipa and my wife and I stayed with him for 4 weeks, then we rented a duplex near the hospital and away from the kids and dog so I could sleep more, or try to.

My son and his wife graduated from LLU School of Dentistry.

Trew
Posts: 892
Joined: Jan 2010

Laterst News Letter from the Proton Fellowship of LLU alumni:

"Dear Members,
The opening quotation reminds me of something I've heard from Golf Professional, TV Personality, and BOB Member, Ken Venturi on several occasions: "The world will not remember you for what you take from it, but for what you leave behind."

No one that I know of has done more to give back than this great man. Ken has raised almost $3 million for the Ken Venturi Endowed Chair at Loma Linda through his annual Proton Charity Golf Tournaments. This year's tournament is planned for May 17, and I'm planning to be there. Space is limited; the event is always sold out, so make your reservations soon. Details and information for registering are provided below."

The letter then goes on to links for this month's latest from LLU proton graduates. BOB stands for Brotherhood of the Balloon- a technique used at LLU to help protect the rectum from damage during treatment. This is a fine program and alternative to surgery.

Trew
Posts: 892
Joined: Jan 2010

News from LLU:

The February 1, 2010 paper, published in the Journal of Clinical Oncology is titled, “Randomized Trial Comparing Conventional-Dose With High-Dose Conformal Radiation Therapy in Early-Stage Adenocarcinoma of the Prostate: Long Term Results From Proton Radiation Oncology Group/American College of Radiology 95-09.”

http://jco.ascopubs.org/cgi/content/short/28/7/1106

hopeful and opt...
Posts: 1331
Joined: Apr 2009

I attended a support group tonight. Asked the doc running the group to discuss IMRT verus proton......anyway, he said that loma linda , a few weeks ago came out with information showing proton was doing very well......do you know anything about this?
Ira

Packman2
Posts: 1
Joined: Mar 2010

The proton therapy site in Bloomington Indiana is associate with a company called ProCure. They just opened another center in Oklahoma City in Jul 09. I completed treatment there for prostate cancer last month. It was a great experience. Have a follow-up in May, and am expecting my PSA to be <1.

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Evagirl
Posts: 60
Joined: Mar 2010

I was wondering if your gleason scores are mostly 3+3 and 3=4 total 7
and a 18 on the PSA CA contained in one side of prostate.

Has anyone heard if Proton would be effective here?
and if radiation would be combined?

I would be willing to spend $25 thou to avoid complications

to me money is to be used for something you really need~~

Trew
Posts: 892
Joined: Jan 2010

You should contact a proton site near you or in a place you would like to visit and get info directly from them. I contacted two sites and had info back within 24 hrs from both places. They will want copies of biopsy and path reports and lab reports. Not hard to provide. And then go from there. Your DH looks exactly like the majority of men I saw at LLU. His scorces look like the scores of many men there. DH is lucky that the higher number on his gleason is the back number- that is in his favor.

You have nothing to lose- pick a site and call or email. Why not?

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lewvino
Posts: 1007
Joined: May 2009

EvaGirl, Of course we are not doctors just former patients but I would think Proton would be worth exploring. The 3+3 as Trew mentioned is in your favor. Some insurance companies won't pay for the treatment but others do.

Larry

hopeful and opt...
Posts: 1331
Joined: Apr 2009

In the US TOO Prostate cancer education and support Hot sheet 1800-80-us-too or www.ustoo.org , March 2010 there is an article - a rwiew by a task force at the mass general hospital on the results of various treatments for men withlow risk prostate cancer.
(Psa less than 10ng/ml witha glason score less than 7.)

Part of the results---"Proton Beam therapy is most costly without any evidence it is better"

Frankly I notice that some on this site go on and on about Proton Beam therapy without providing any scientific evidence that it is better.....I know that I will get some responses from this, in the responses please provide concrete reproducable information that it is better, not the sales literature that the Proton Centers provide, or that doctors have been patients of proton, or any thing else of that type.......Simple scientifically show that Proton is better.

Ira

Trew
Posts: 892
Joined: Jan 2010

Perhaps proton Beam Therapy is only equal to surgery in some ways, But consider the outcome: far less incontinence and ED problems. For a younger man he can still father a child after proton beam therapy- try doing that after surgery. And the risks of mistakes during proton beam therapy are far far less than in surgery where nerves or bladder neck or... can be damaged. To escape those conequences some search the country for the best surgeon because they know full well what the outcome of surgery could be. And surgery is expensive, too. A little more and one can bypass all the risks associated with surgery.

So surgery and Proton beam therapy are equal? How so?

hopeful and opt...
Posts: 1331
Joined: Apr 2009

By the way its comparing active surveillance, radical prostecectomy, brackys therapy, IMRT and Proton Beam'''''''''''the article is lengthy , so you really need to read it, but below is another quote.....

"there are different risks for certain side effects and complications, but no treatment stands out as superior overall."

Ira

Trew
Posts: 892
Joined: Jan 2010

Hopeful, can you post a link to this article? Not that I doubt you, I'd justlike ot read it if I can.

hopeful and opt...
Posts: 1331
Joined: Apr 2009

"Hi
In the US TOO Prostate cancer education and support Hot sheet 1800-80-us-too or www.ustoo.org , March 2010 there is an article - a rwiew by a task force at the mass general hospital on the results of various treatments for men withlow risk prostate cancer.
(Psa less than 10ng/ml witha glason score less than 7.)"

By the way, I do not take any ownership in one method or another, I simply think that it's a good idea for us all to work together, so we can improve as a group.

I think that it's ok to doubt and ask why and how.........thats how we develop knowledge.

Ira

Trew
Posts: 892
Joined: Jan 2010

Evagirl, You and DH should look at the proton sites, select one and then call their information number and request a consult- very easy. They seemly consider your path, lab and biopsy reports and they will let you know what they can do for you. Proton stats are building in number every year. I go on the testimonial page for Loma Linda and I am amazed at the number of very educated people that use proton therapy. When I was starting proton therapy I shared the walk with a dentist from WA who was just finishing his full course of 45 proton treatments. He was out goling 3 times a week and enjoying the dining in and around the Loma Linda area. And all systems were still intact.

Here is link to the testimonial page for LLU:

http://www.protonbob.com/proton-treatment-homepage.asp

Look on the menu box on the left side and you will find it.

BOB refers to the Brotherhood of the Balloon. LLU inserts a balloon up the rectum and then fills it with water before treatment to help protect the rectum from damage. All men share this expereince and from that comes the name of the fellowship we share.

Make the call- investigate.

hopeful and opt...
Posts: 1331
Joined: Apr 2009

"Frankly I notice that some on this site go on and on about Proton Beam therapy without providing any scientific evidence that it is better.....I know that I will get some responses from this, in the responses please provide concrete reproducable information that it is better, not the sales literature that the Proton Centers provide, or that doctors have been patients of proton, or any thing else of that type.......Simple scientifically show that Proton is better."

Trew
Posts: 892
Joined: Jan 2010

It was never my intent to show proton beam as superior to anyting- just to present it as an alternative to surgery and list sites where proton therapy is available. It is worth noting that proton sites are increasing in number even though they are expensive to build. I understand the new site being built in Flint, MI is being driven by a man who had proton therapy for his prostate at Loma Linda U in CA and he was so enthused by the treatment and what it allowed him to escape from he was determined to get a similar site built in MI. And so it goes. There are far more happy proton patients, percentage wise, than there are happy surgery patients percentage wise. No, no hard facts- I just watch this board and note the number of men who have had complications like incontinency and ED problems after surgery. Those side effects are rare with proton beam therapy. Ten years down the road what is the rate of recurrance for surgery and proton therapy? Even if it is the same, for ten years a man as a better quality of life after proton therapy than after surgery, generally.

These are my opinions. IF I could have caught my cancer earlier I would have taken all proton therapy and never looked back. Surgery was NEVER my first choice. I am living the reasons why right now. But I also had some complications with my cancer, so who am I to say anything?

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lewvino
Posts: 1007
Joined: May 2009

It will be interesting to see where PROTON goes in the future. I'm not sure why some insurance companies deny paying for it and others will pay. When I talked to Loma Linda and Told them I had BCBS-Tennessee they straight out told me that it would not be covered and they had dealt with other patients with BCBS/TN before.

Also I'm curious with the new health care plan being passed how that will impact Proton centers and all. I have great respect for Proton since it did the trick for my dad back in 1996 (still living cancer free) and also have great respect for DaVinci since I had the surgery in 2009.

Larry

hopeful and opt...
Posts: 1331
Joined: Apr 2009

I live relatively close to Loma Linda...in fact, I had contacted them.........around here there are several support groups, and I've been to a few......this is not scientific, but I met a man who has been on active surveillance for a few years and goes to all of them, and in my opinion is consummed with this, instead of living his life.....this guy is very well educated and is really smart, taking copious notes whereever he goes, and is really knowledgeable.......we had a conversation , and he said that he went to a proton support group at loma linda.....basically he mentioned that the people there really support prorton...in fact, he actually said he thought that they were on kool aid..........who knows, maybe its the atmosphere and the surrounding of the place where the therapy is given, or what ever.

Ira

Trew
Posts: 892
Joined: Jan 2010

Hardly. But it does foster a strong bond of friendship and support among those in treatment and the medical care was always very considerate of kind, at least to me. I did not bond real well with the proton patients myself since I only had 15 proton treatments and then finished with radiation- but there was a good sense of support among the radiation patients, too. I would sit and listen to patients tell me of their experiences- all very positive.

In my cancer journey so far- it has been my most positive and encouraging part of treatment.

Certainly no kool aid- but lots of care, support and sympathy.

And Hopeful, I'm sorry I missed your link above to the article. My mistake- not yours.

hopeful and opt...
Posts: 1331
Joined: Apr 2009

the ones who have success...

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

and such a self fullfilling prophecy. However the more I stay on here and the more I read...I feel like I am starting to get a bit paranoid that my cure may not be a cure at all...and only just a non-reading of cancer for several years.....who knows? My better half says I better get off here and stop reading so much into everything I read on here and other research efforts. Sometimes it seems the more you learn and find out, the less you really know about this beast....its exhausting if you let it be...but I like to think the following:

1. I did my research
2. I found the treatment and person to do it
3. It was a good experience
4. Got the best results I could expect - no postive margins - non-detectable PSA
5. I need to be Happy and believe I no longer have prostate cancer in my life...other than posting on here

That's my plan and I'm sticken to it!

Randy in Indy

Trew
Posts: 892
Joined: Jan 2010

Randy, you can't do better than what you have done. I am still apprehensive. My gleason was a 9 with bladderneck involvement. I am still concerned even after surgery and radiation and shots. I think that concern comes through in a lot of my posts. I am sorry. Its just me in a hormonal imbalance.

;)

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

My wife said sort of the same thing Randy.....You do have to take the forums and literature with care since sometimes these can tend to be more critical conditions and you do not hear about all the ones that are doing great.

I personally enjoy the forum and as you do helping those that are just being diagnosed with this beast. It also helps keep me grounded and knowing that with my positive margin that I'm not out of the woods yet.

It helped me tremdously the support given when I first found out about my prostate cancer.

Larry

Trew
Posts: 892
Joined: Jan 2010

:)

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You have been all over your situation and I feel done what you need to...I hate the hormone effects on you and wish I could get rid of them for you. It makes me hurt to see and feel your pain brother...I pray you get through this on the right end of the stick! I really do feel so lucky so very lucky!

randy in indy

Trew
Posts: 892
Joined: Jan 2010

Randy, thank-you. I am always delighted to hear success stories like yours, too. I do think in the end I will be ok- good to think that. Along the way I hated surgery, I hated the the shots- radiation part of treatment was a bit rough but the proton part was pretty good. And I like the way my PC has actually drawn my wife and I closer even though there are some serious physical problems right now.

And randy, I am just up the road from you in southern MI.

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