Proton Beam Graduate

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KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 3/6/2007 2:31 PM (GMT -6)   
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
 

pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 3/6/2007 4:41 PM (GMT -6)   
Hi Ken

Welcome aboard! Thanks for your comments on my postings. I am not here to push any kind of treatment, but to give objective facts about proton radiation and all other types of treatments to help readers in their choice of a treatment. I believe in the years ahead, many more men will elect proton radiation for their treatment when they become educated about it, especially with more and more proton centers opening up in the U.S. of late.

This is a fantastic message board for PC--I have not found any to equal it. The vast majority of men here have chosen surgery, but a few of us who are into radiation treatments have wormed our way into this website to tell our story too and to help others as best we can. It is important that we get more men who have opted for radiation treatments (i.e., IMRT x-ray or proton beam as well as seed implants). This way we will truly be a balanced message board which should be welcome to all PC patients, including those struggling with a treatment decision. We can all learn a lot from some of the great PC books that have been written, but having detail insight from men who have or are undergoing treatment is truly invaluable. We know what to expect and be prepared for it, for better or worse.

Please stay around to keep us informed of your progress. I would like to see many more members here who were treated many years ago so that we can chart their PSA progression and how successful they have been in staying free from their PC.

All the best.

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 3/6/2007 5:10 PM (GMT -6)   

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
Diagnosed with a Gleason 4X3. 1 out of 7 samples, Left Side. DRE showed Normal. Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. PSA at 1 yr. 1.7.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/8/2007 11:30 PM (GMT -6)   

Hi ~ KenW  & Loved Ones,

 

 

Caring Enough to Share…..

 

 

       A   “Special”  Warm Welcome  to  You!   yeah   

 

We are giving you a nickname:    “Our” Yearling  tongue  

 

This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey.  Thank you for joining all of us in the continued road to HealingWell…..

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

Your thread: Proton Beam Graduate is a wonderful gift you've given to all of us. 

 

This is so important ~ once the decision is made continue to move forward in a positive manner.  Your journey is testament to this.  We can’t tell you enough…. How happy we are that you Cared Enough to Share….

Thank you from deep within our hearts. 

 

                                                                 Continue to spread the WORD….. 

 

 

Our thoughts and prayers are with you.

In Friendship ~ Lee & Buddy

 

“God Bless You”

 

It's a little prayer  ~  "God Bless You"

...but it means so much each day,

It means may angels guard you

and guide you on your  way

 

 

Special Hugs to you…. .for a well traveled journey.

Post Edited (bluebird) : 6/13/2007 12:25:25 PM (GMT-6)


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 3/9/2007 5:34 PM (GMT -6)   

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


Diagnosed Feb 2001  (Age 65)
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 3/9/2007 7:30 PM (GMT -6)   
Hi Dutch,
 
Good to hear from you. I'm brand new to this forum. Just stumbled upon it, so I went back and read your post. Good stuff and just what all we Proton Beam "Guests" went through. Dave may know the meaning of Guest as it's part of what Loma Linda does. Good to see all this good info on a previously Taboo subject.
Diagnosed with a Gleason 4X3. 1 out of 7 samples, Left Side. DRE showed Normal. Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. PSA at 1 yr. 1.7.


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 3/9/2007 10:36 PM (GMT -6)   
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
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 3/10/2007 9:45 PM (GMT -6)   

Hi again Dave,

I asked about the Support Group as I though you were having your treatment at Loma Linda. The support there is amazing. There are usually 75 to 90 men at every meeting. Of course they treat upwards of 150 men per day, so that would explain the large group. They also have 2 very special people making sure the support is known. Food and drink and speakers most nights. Pot Luck Dinners, twice a week, at 2 locations bring the men together also. Good that you found this Site and the great support you get here. Prostrate Cancer Patients need as much as we can get.

I'm sure you are getting some of the best treatment available where you are. Your description was quite similar to my experience at Loma Linda. It's great that so many other facilities popping up. Traveling a long way does not work well for many.

I just turned 76 yrs. in February so not one of the young ones. We did have a few guys in there 50's. Most 60 to 75 year range.

Hope things are going well for you and side effects are minimal. Most guys I came in contact with called it their Loma Linda vacation as they suffered no effects and ran all over S. Calif. taking in the sights.


Diagnosed with a Gleason 4X3. 1 out of 7 samples, Left Side. DRE showed Normal. Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. PSA at 1 yr. 1.7.


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 3/11/2007 10:07 AM (GMT -6)   
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
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


Pete42
Regular Member


Date Joined Mar 2007
Total Posts : 114
   Posted 3/19/2007 12:50 PM (GMT -6)   
Hi- Im new to this site, recently diagnosed, 51, am considering Loma Linda. One observation - Almost all of you who have this procedure talk about "minimal side effects" or "none". When you dig a little deeper there is always the stories of having to pee 500 times a day during the treatment or "some bowel" problems, why is this a "minimal side effect"?

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 3/19/2007 3:16 PM (GMT -6)   

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 


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 3/19/2007 3:30 PM (GMT -6)   
Hi Pete

Dutch said essentially what I would have said to you. I have the deepest empathy for the guys who have had surgery and have to deal with the side effects which are many times worse than any short-term side effects from proton radiation. I am almost 50% through my 40 treatments. Early on I have had to deal with some urinary and bowel side effect--they are annoying at times, but manageable (I would define this as minimal side effects). Also keep in mind that any side effects during treatment are expected to go away or subside after treatment. Flomax and Advil are helping with the urinary side effects and Metamucil is helping with the bowel side effects. It is true that some men have no side effects (I have talked to them!) and others do. Some also get fatigue, but I have not experienced that yet. Proton therapy is the only treatment I considered other than surgery. You can read more details of my experiences with my treatment in my thread entitled "Proton Radiation Therapy -- My Journey With Prostate Cancer. Good luck to you on whatever treatment you eventually settle for.

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 3/19/2007 3:34:17 PM (GMT-6)


B&B's World
Regular Member


Date Joined Mar 2007
Total Posts : 120
   Posted 3/19/2007 10:33 PM (GMT -6)   

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


Age 51

Gleason 3+3

PSA from 3.2 to 4.3 in one yr

Biopsy 11/06

DRE negative

4 of 12 cores positive, one lobe, less than 10%

Inflammation only second lobe

Stage T1C Clinical Dx

PSA prior to surgery: 3.9

Da Vinci Prostatectomy 2/27/07:

PCa in BOTH lobes 5-10% of gland

Gleason 3+3

Negative tissue margins

Bladder, seminal ves, vas deferntia negative

Two inguinal hernia repairs

Catheter removed 1 wk after surgery

Full continence (no pad needed) 1 wk after surgery

Full potency, 12th day after surgery
 
 


KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 3/19/2007 11:16 PM (GMT -6)   

Dutch about summed it up, but where did anyone see someone say anything about having to pee 500 times a day? I said I set the record for having to pee and it was due to BPH which I had for years previous to the Proton Beam Radiation. Once an hour maybe.

Becky,

Don't believe anyone gets assurances no matter what treatment.

Yep, the proof is in the pudding.

11,000 Plus Patients and 15 years. Too many have never heard of it.

Ken

 


Diagnosed with a Gleason 4X3. 1 out of 7 samples, Left Side. DRE showed Normal. Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. PSA at 1 yr. 1.7.


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 3/20/2007 10:20 AM (GMT -6)   

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

 



68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.

Post Edited (pcdave) : 3/20/2007 7:49:28 PM (GMT-6)


B&B's World
Regular Member


Date Joined Mar 2007
Total Posts : 120
   Posted 3/20/2007 10:46 AM (GMT -6)   
Dave,
Thank you very much...getting your answers in this way is very helpful, I am sure, to me and others hunting and pecking in here!
Becky

Age 51

Gleason 3+3

PSA from 3.2 to 4.3 in one yr

Biopsy 11/06

DRE negative

4 of 12 cores positive, one lobe, less than 10%

Inflammation only second lobe

Stage T1C Clinical Dx

PSA prior to surgery: 3.9

Da Vinci Prostatectomy 2/27/07:

PCa in BOTH lobes 5-10% of gland

Gleason 3+3

Negative tissue margins

Bladder, seminal ves, vas deferntia negative

Two inguinal hernia repairs

Catheter removed 1 wk after surgery

Full continence (no pad needed) 1 wk after surgery

Full potency, 12th day after surgery
 
 


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 3/20/2007 1:03 PM (GMT -6)   

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


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


TonyB
Regular Member


Date Joined Mar 2007
Total Posts : 37
   Posted 4/6/2008 7:29 AM (GMT -6)   
In have read that University of Pennsylvania Health System in Philadelphia, PA is opening a new center soon called "The Roberts Proton Therapy Center". It's a part of The Perelman Center for Advanced Medicine. This center will be the first such facility in the mid-Atlantic region. Does anybody know when this center will open for business?
robotic LRP Jan2007


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 4/6/2008 6:25 PM (GMT -6)   
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.

fredlp
New Member


Date Joined Jan 2007
Total Posts : 14
   Posted 4/7/2008 8:05 AM (GMT -6)   
Hi everyone

Just a short note on Proton Therapy. I completed treatment at Loma Linda in June 07. My initial PSA was 38.3, gleason 3x4=7 and staged T1C. I also had Proton, Photon and 5 months Lupron, ending June 07. My first post treatment PSA in September 07 was 0.1. Just received second post treatment PSA April 08 = 0.3. Not sure Lupron from last year is still a factor, It must be! regards to all, Fred

TonyB
Regular Member


Date Joined Mar 2007
Total Posts : 37
   Posted 4/7/2008 10:19 AM (GMT -6)   
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.
:-)
SYMPTOMS: PSA Velocity=2.6 to 4.7 over 12 month period; DRE=Normal

PRE-OP STAGING: Biopsy=1 in 12 cores positive; Gleason 3+4=7; T1c; Bone scan=clear; CT scan=clear; da Vinci robotic LRP Jan2007 (@ age 58)

POST-OP PATHOLOGY: Adenocarcinoma; Gleason 3+3=6; T2c; Extra Prostatic Extension=Clear; Seminal Vesicles=Clear; Margins=Clear; Post-op PSA's=undetectable

Post Edited (TonyB) : 4/9/2008 5:42:51 PM (GMT-6)


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 4/7/2008 10:39 AM (GMT -6)   
Hi Tony
 
Well said!  I like your objectively.  I am so happy to hear that your robotic surgery went well and that your side effects have been minimal.  It is refreshing to hear this and hopefully we will see more postings like yours so as not to frighten off those who are considering surgery.  It would be very helpful if you could add a footnote to your postings so that we have some background information about you (see example in my footnote below).  Continued good luck!
 
Dave
-69 years young!
-29 core biopsy 9/27/06 at age 68
-PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area], Gleason 6 [less than 5% in two other areas], Negative DRE, bone scan and Endorectal MRI. 
-Completed 39 Proton radiation treatments 2/22/07-4/18/07.   
-PSA History: 7.1 pre-treatment; post treatment: 2.1 (3 mo.), 2.4 (6 mo.), 1.7 (9 mo). Radiation oncologist said the 3-mo. drop of 70% exceeded expectations and the slight 6-mo. movement upwards was not a cause for concern now.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.  
 
 


KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 4/8/2008 9:40 PM (GMT -6)   
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



Diagnosed with a Gleason 4X3. Second opinion at Stanford came back as 3X4, 1 out of 7 samples, Left Side. DRE showed Normal. Before Biopsy Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. 1st PSA 4 Months 3.4, PSA at 8 Mo. 1.7. - 1 Yr. PSA 1.8 ( Different Lab ) 4 th PSA Slightly up at 2.19- Free PSA at .33 probably due to BPH. 1 year and 11 mo. Urologist discovered Scar Tissue in the uretha causing frequent urination with burning. Bladder not emptying completely.
Scheduled ( 12/17/07 ) to have the scar tissue sliced to open up the restriction. Good news is PSA is down to 1.14.
Urethrotomy performed. Flow much improved. No more burning.

Post Edited (KenW) : 4/8/2008 9:47:11 PM (GMT-6)


TonyB
Regular Member


Date Joined Mar 2007
Total Posts : 37
   Posted 4/9/2008 1:32 PM (GMT -6)   
Best wishes to all of you Proton Therapy pioneers. You are my heros!
yeah
SYMPTOMS: PSA Velocity=2.6 to 4.7 over 12 month period; DRE=Normal

PRE-OP STAGING: Biopsy=1 in 12 cores positive; Gleason 3+4=7; T1c; Bone scan=clear; CT scan=clear; da Vinci robotic LRP Jan2007 (@ age 58)

POST-OP PATHOLOGY: Adenocarcinoma; Gleason 3+3=6; T2c; Extra Prostatic Extension=Clear; Seminal Vesicles=Clear; Margins=Clear; Post-op PSA's=undetectable

Post Edited (TonyB) : 4/9/2008 5:42:10 PM (GMT-6)


corynski
Regular Member


Date Joined Apr 2008
Total Posts : 63
   Posted 6/17/2008 11:29 AM (GMT -6)   
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
_____________________________________________________________________________

Pre-Diagnostic PSA record, begun 1995 at age 58..... now 70:
1995 - 1.2, 1997 - 1.7, 1998 - 1.4, 1999 - 1.7, 2000 - 3.4, 2001 - 2.0,
2002 - 4.6 on 6/6, 4.1 on 7/24, 3.5 on 10/1 at urologist's office
2003 - 2.3, 2004 - 2.7, 2005 - 3.2 on 7/15, 2006 - no test????
2007 - 5.8 on 2/5, 5.7 on 6/16
2008 - 10.4 on 2/29, 8.8 on 4/21 --- Scheduled biopsy for 5/6/2008. On a graph, the PSA rise looks exponential, i.e. a growth function.

*****************************************************************
5/22/2008 -- Results of biopsy
4 of 12 cores show adenocarcinoma:
LLM - Gleason 3+3=6, PTI=10%, LM - Gleason 3+3=6, PTI=2%
LLA - Gleason 3+4=7, PTI=25%, LA - Gleason 3+3=6, PTI=20%
Clinical Stage: T2a
Comments:
RLB - There is focal acute prostatitis
LLM - There is focal perineural invasion
LLA - There is focal perineural invasion
Partin Table:
OC - 33%, CP - 52%, SV+ -10%, LN - 4%
No treatment selected yet.....

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