Proton Beam Graduate

Hi All.

I just found this forum and was glad to see PCDAVES fine post.

He about said it all, so I won't repeat.

I finished my Proton Beam Treatment at Loma Linda on jan 30th 2006. My psa dropped from 6.4 to 3.2 on the 4th month and then to 1.7 on the 8th month. It's holding steady at 1 year and 2 months. Probably slowing down due to the BPH I have suffered with before the treatment. I still have urgencies and burning, but hopefully that will diminish with more time. Most guys had no symtoms while I was there and I set the worlds record for having to pee at our support meetings:)

My decision to choose PROTON BEAMS was similar to pcdave's. Quality of life. No diapers, Incontinence or Impotence. It still works:).

I hope more guys are finding out about this great, non invasive treatment. I'm doing my best to spread the word.

Best of health to all here regardless of what treatment they chose.

Ken

Hi Dave,

Thanks again for that Great Post. Much better than what I could do. I try. I just copied your post and sent it to a friend who has just made an appt. to talk about Proton Beam Treatment in Indiana. Hope it's OK with you. Wanted to give him some info so he could ask better questions. I'm afraid I'm Very biased about this method of treatment. I'm sure you know how I feel. The word has to get out. I've positively effected 3 guys lives by letting them know. Feel very good about that and want to do more.

How far along are you? Attending Support Group Meetings?

Ken

KenW:

Glad to hear from you and agree that PcDave does a great job on his thread.  I also have one about 5 pages back - A Proton Radiation Experience.

I have been very fortunate to have had no problems at all so far - will be having my 6yr PSA around August.

Take care,

Dutch

Hey Ken

Thanks for your posting below--I want to respond to your questions. Since being diagnosed with PC in early October 2006, my goal is not only to treat my PC, but to help as many men with PC as I can. I also want to warn all men that I come in contact with to monitor their PSA and get an annual DRE starting at age 40 or sooner, if there is a history of PC in their family. Therefore, I am delighted and humbled that you sent a copy of my proton thread on this website to a friend of yours.

I finished my 12th treatment today out of 40. I am certainly biased that proton radiation therapy was the right treatment for me. I am also biased that all men diagnosed with PC should become thoroughly educated as to the pros and cons of all PC treatments, including proton therapy, so that they can decide what is best for them. Because of the few proton therapy treatment centers in the U.S. until recently, proton therapy has not been in the forefront of PC treatment. I will do everything I can to make men aware of proton therapy and then they can decide if it is for them. I believe that more and more men with PC will elect this form of treatment in the future as more and more proton therapy centers are available to them. Proton therapy is not only used to treat PC, but to successfully treat many other types of nasty cancers. Where I am being treated each day, I also see many kids being treated with the proton therapy for brain and other cancers. When you see young kids being treated for cancer you know that life is not always fair. It humbles you and makes you count the blessing that you have had in life.

At this time, my principal support group is this website which I greatly admire. During my treatments there are weekly meetings for men currently under treatment, but not many attend. Many live locally and are working. I do get a chance to talk with some of the men briefly while awaiting my treatments each day. I know that the experience at Loma Linda is so much more encompassing, but I did not want to travel 3000 miles when the nearest proton therapy center to me is less than 200 miles away, and is close to where my married daughter lives. I have no reason to believe that my treatment will not be comparable to Loma Linda, at a minimum.

I am glad that you joined this website to help educate other men about proton therapy and to share in our fellowship (i.e., helping and encouraging others in need). I did intensive research for over two months prior to making my treatment decision. None of the research told me about the reality of each treatment in human terms. Here we get the real scoop which is very helpful in getting through the side effects during and after treatment, or to be fully aware of them before a treatment is decided upon.

Continued good luck in keeping you PSA to the bare minimum!

Dave

P.S. Ken, it would be most helpful if you would tell us your age! Age can be very important deciding factor in the treatment one selects. I always like to see if any younger guys select proton therapy. I know of some who have selected it in their mid or later 50's and have done well in the years following.


Posted 3/6/2007 6:10 PM (GMT -5)
Hi Dave,

Thanks again for that Great Post. Much better than what I could do. I try. I just copied your post and sent it to a friend who has just made an appt. to talk about Proton Beam Treatment in Indiana. Hope it's OK with you. Wanted to give him some info so he could ask better questions. I'm afraid I'm Very biased about this method of treatment. I'm sure you know how I feel. The word has to get out. I've positively effected 3 guys lives by letting them know. Feel very good about that and want to do more.
How far along are you? Attending Support Group Meetings?

Ken

Hi Ken

You are still just a kid at 76! I am being treated at MGH in Boston under the direction of their top radiation oncologist who has a great reputation. They only treat a maximum of 12 men for PC during each 8-weeks period because they allocate time for proton radiation therapy to many other types of cancers. I see many kids each day who are being treated for various types of cancers. I would have loved the Loma Linda experience, but it didn't make sense for me to go there (3000 miles away). I am enjoying my 6-month old grandson while staying with my married daughter and son-in-law close by. I am getting some urinary and bowel side effects which some men get during treatment--they are a little annoying, but I am taking them in stride! I hope some of your lingering side effects clear up and that you continue to do well. All the best.

Dave

Pete:

I consider those two things you mentioned minimal compared to: surgical incisions to heal, catheter, incontinence, impotence, swollen & black and blue testicles, swollen prostrate(seeds and cryosurgery), etc.

I am in awe of these young men on this board who are facing this Pca challenge and going thru the surgical process with the greatest of attitudes.  They are real heros. 

Dutch 

Okay Dave,  I think you are one of the experts, so I'll ask you:  In light of reports of pathology after surgery, posted here, in which so many have more cancer than shown by biopsy (B&B included), what assurance were you given that the proton radiation would eradicate all the PCa?  Is the proof in the PSA pudding after treatment?  In addition, what have you heard about continence and potency waning over time (5 yrs?) after radiation?  Why would anyone even have surgery if proton radiation is so minimally hurtful?  Yes, I have read some threads, but its getting awfully "thready" in here...I am ready for your short version, if you would.  Thank you, Becky

hi becky

i believe that all of your questions are covered in my thread "Proton Radiation Therapy - My Journey With Prostate Cancer".  However, I will give you the short version below, as requested.

"Okay Dave,  I think you are one of the experts, so I'll ask you: 

you flatter me, but i am not really an expert!  i try to do a lot of research and gain as much knowledge as i can about PC. 

In light of reports of pathology after surgery, posted here, in which so many have more cancer than shown by biopsy (B&B included), what assurance were you given that the proton radiation would eradicate all the PCa?

there is no doctor that can give any PC patient a guarantee that their treatment will eradicate or cure their cancer, including proton. there are no tests prior to treatment that can tell a patient with 100% accuracy what their stage of PC is.  the tests, while imperfect, are the best available stats that a doctor has to work with.  based on such stats, doctors can predict the probability of eradicating the cancer based on  historical treatment data.  the earlier the projected stage of cancer, the higher the probability of a cure.  these are only estimates at best.  because i am older and it is projected that i am in an earlier stage of PC, i felt i had as good a chance for a potential cure with proton radiation as with surgery with a much lower risk for negative side effects longer term.

the reason so many men decide to have surgery is that they want the cancer removed promptly and feel it is their best chance of a cure.  we know, of course, that even with surgery the cancer could recur if it was in the margins and the surgeon couldn't identify all of it for removal.  some believe that radiation might be better than surgery because an area beyond the prostate is radiated, hopefully killing any cancer that may have escaped the prostate into the surrounding margins.  again, there are no guarantees that the cancer will not recur. 

Is the proof in the PSA pudding after treatment? 

the PSA after treatment, whether it be surgery or radiation, is the key test to identify recurring PC. after treatment, men will have to be monitored with periodic PSA tests for the rest of their life, not knowing if future tests will show a rise in their PSA indicating a good probability that their cancer has recurred.

In addition, what have you heard about continence and potency waning over time (5 yrs?) after radiation?

i have not heard of any continency problems with radiation.  during radiation you can experience slower flow, more frequency and some mild burning sensation.  after treatment, these symptoms usually go away.  longer range continency and urination problems could well relate to an enlarged prostate.

there is no question that those treated with radiation (whether it be proton or photon (x-ray) may sooner or later reach total or some degree of impotence.  however, in many of these cases, it appears that viagra and other similar drugs will overcome the impotence, which is not always true with surgery. many men can go years before they have to deal with impotence after radiation. 

Why would anyone even have surgery if proton radiation is so minimally hurtful? 

younger men (40's and 50's), in particular, often don't want to take what they perceive as a risk in being treated with radiation (i.e., they feel that surgery offers them a greater chance of eradicating their cancer).  part of the problem is one of perception and fear of radiation.  another problem is that, other than Loma Linda, there are not really definitive long-range studies of the success rates with proton radiation, especially relating to younger men who undergo this treatment. 

proton radiation for treatment of PC and many other cancers has been around for several decades, but only on a very limited basis.  with many new proton centers now opening up in the U.S., proton radiation will undoubtedly come to the forefront of cancer treatment, including PC.  proton therapy has therefore been somewhat hidden and many PC patients are not led in that direction because only a minority of PC patients have been treated that way.  also, most urologists talk their patients into surgery. 

when i first started to read about proton therapy for PC i took notice and decided to explore its potential for my treatment in depth, including talking to those who have been treated with proton radiation.  I became convinced early on that it was the right treatment for me.  I know that many PC patients, even in their 50's have chosen proton radiation.  it really boils down to becoming an educated consumer regarding the various type of treatment for PC and narrowing it down to what you believe is best for you.

Yes, I have read some threads, but its getting awfully "thready" in here...I am ready for your short version, if you would.  Thank you,"

i guess i ended up giving you a long answer!  all the best!  dave

Becky

A couple of things to add to Dave's eloquent post.

An Aug. 2005 letter published by John Hopkins Medical stated that "newer forms of radiation are as effective as surgery".  I personally think that as more proton centers are built it's use will increase rapidly.

As for a promise of a cure - there is no one treatment modality that can claim that distinction.  I was never promised a cure, but I was told my side effects would be minimal and that was delivered. 

Dutch

This article http://pennhealth.com/perelman/proton/ says 2009. Remember that in order to treat they must obtain FDA approval and certification for the gantry and the cyclotron, which is why it can take as long as a year after opening to finally start treating more than just a trickle of patients.

I can't share anything about having a personal experience with proton therapy treatment so I won't try to guess about what that journey is like. I can speak with some accuracy about my experience with robotic surgery. My surgery was not even close to being as brutal as some have described it on this thread. If a newbie were to read some of the posts here, they would come away frightened to death about their choice of surgery as an option. It's not fair, in my view, to pass judgement about a therapy you have absolutely no first hand experience with. I'm about 15 months post-op and I have nothing but positive things to say about my experience. All of my functions have been restored to pre-op condition. I wouldn't dare criticize or defame, in any way, the various treatments that are available for PCa unless I had first hand knowledge about them. I am, however, very stoked about proton therapy. I wish it had been offered to me as a treatment option. It deserves serious consideration by those trying to choose a treatment. I believe the future is extremely promising for those who have proton therapy available to them.

Good to see this thread pop up again. Thought this "Brotherhood" Link would be of interest to those who don't know much about "Protons"

MEMBERSHIP — 3,312

We added 39 new members last month. Our membership now totals 3,312 from 50 U.S. States and 24 countries. Because of the patient backlog at Loma Linda, a growing number of our members are from UFPTI Jacksonville, MD Anderson, MGH Boston and MPRI Bloomington. In the not too distant future, we will be seeing members from the new proton treatment centers in Virginia, Pennsylvania, Oklahoma, Michigan, Washington, and other parts of North America, not to mention the new facilities being built in Europe, Asia and Australia. Today, there is only enough proton treatment capacity to treat about 1% of the men who are being diagnosed with prostate cancer. This may explain why the waiting lines are getting longer. All this will change as proton therapy is being discovered and new facilities are constructed to handle the patient demand.

Ooops here's the rest of the newsletter. http://www.protonbob.com/newsltr.asp

Thank you all for taking the time to inform those of us still stumbling in the darkness. I also found Yana so very helpful, and by just sitting for long periods reading personal accounts and letting them sink in, I kept getting different feelings, mostly depressing, regarding the incontinence that too frequently seemed to follow surgeries. Ditto reading accounts of radiation. So the Proton Beam suddenly appeared as a magic bullet, with minimal down time, minimal pain and suffering, and minimal side effects. If I am still contained, that is. Am I forming a picture that is too optomistic?

My search is nearing a close, as I have a urologist appointment next Thur. I am looking for the down side of the Proton Beam treatments so I can make a decision. I'm about 370 miles from Indianapolis, and about 500 from Jacksonville, so I'll be contacting one of those for info soon. Anyone have experience with these treatment centers?

Thanks again for all your efforts to educate us.....

charley coryn/70/east tennessee