Posted 1/21/2007 8:23 PM (GMT -6)
http://www.healthboards.com/ Try this web site and do a search on positive margins got several hits.
Posted 1/21/2007 9:28 PM (GMT -6)

Hi Pontiac,

Thanks for the tip.

Someone (perhaps you) suggested that site to me a week or so ago. I have been there several times over the past week, lurking and reading postings. HealthBoards seems to have more high Gleason people posting than HealingWell so at first I thought that it might have good information for me. However, most of HealthBoards high Gleason posters have selected treatment other than surgery right from the start so I didn't spend a lot of time reading their postings. I will go back and check out postings related to positive margins.

Thanks for the suggestion.

Ben



DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Post Edited (BenEcho10) : 1/22/2007 6:27:44 PM (GMT-7)

Posted 1/21/2007 9:41 PM (GMT -6)
Here a few more threads that I found on the thread GLEASON 8 - 10. As before, I am only pulling out threads from people who had surgery first but (generally because of positive margins) but are considering / having further treatment:

Ben

**************************************************

Thread: GLEASON 8-10. Posted by: JEB187CHS. DATE: 11/16/2006

My Gleason was first estimated at 8 from biopsy but ended up 9 at post-op pathology. My PSA was over 16 before surgery, but...... because my bone scan, cat scan, pet scan, lung x-ray etc. all came back clear we decided on surgery. After the pathology though based on the pathology the doctors suggested I seek further treatment. My PSA post op has gone to 0.2 and stayed there for over a month. My Prostate cancer had penetrated the sheath and invaded the seminal vessicles and bladder neck..... but thank goodness had not spread to the lymph nodes that were also removed.

I start after Thanksgiving on a clinical study using hormone and chemo or hormone therapy alone. It does not preclude radiation and I expect to have it whenever my oncologist decides it is time. I am a big believer in second opinions and I will continue to have followups by at least two oncologists during my treatment. The way I look at it.... I am not giving up and I won't let them do it either. We had a problem with one radiation oncologist and consulted another and truly got a new lease on life and feel we are on a "good" path now.

Hang in there as our friend Bluebird says this is perfect place to find "rainbows" and "hugs" when your days are dark and gloomy. People here are blessed by the others in this forum.

John
________________________________________
Diagnosed Aug. 7, 2006
Age 56
Biopsy 8 of 10 positive
Gleason 8
PSA 16.2
Negative CTscan, bone scan and lung x-ray
Lapro Prostatectomy 9/7/2006
Capsule penetration, seminal vessicle involvement, clear lymph nodes.
Post op PSA 0.2
Followup Hormone Therapy

**************************************************

Thread: GLEASON 8-10. Posted by: JEB187CHS. DATE: 11/21/2006

Dreadnought,

The side effects of the study, which by the way I qualified for now that my PSA has held at 0.2. The hormone therapy is supposed to put the cancer cells "to sleep", supposedly the prostate cells most often do not continue to grow and multiply when the testosterone is reduced by what amounts to "chemical castration". The good thing about this compared to physical castration is that it can be stopped and allow the production of testos to start again. The side effects..... loss of sex drive, possible hot flashes, possible loss of muscle mass, and thinning of bones. Usually short term these side effects disappear after the treatment ends. The treatment usually runs one or two years.

If I get the chemo leg.... half get chemo half don't, the side effects of chemo can be loss of appetite, vomiting, and possibly loss of hair and anemia. But these last ones are less likely with the chemo for prostate cancer. The doctor says most participants have little or no side effects.

The radiation if we do it while in study, can add other side effects. Possibly affecting continence, sex drive, bowel function etc.

BUT the bottom line....... we'll be killing the little buggers, extending life, and delaying the possible reoccurance of the cancer. In my mind I have to do everything possible to achieve this. The nomograph based on my pathology, Gleason score, and pre-op PSA indicates a 95% likelihood of reoccurance of the cancer.

Not pretty but that's the way I understand it. If anyone else has any comments I'd love to hear them. I am determined to beat this.

John

**************************************************
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 1/22/2007 12:24 PM (GMT -6)
Hi Ben-
I'm the business associate mentioned earlier in his post-

My decision for aggressive treatment may not be the best for all to follow- the young oncologist we selected recommends a very aggressive approach in the treatment of PC.

Her thinking is to be constantly ahead of the curve rather than play catch-up.

I must say that I've been very lucky so far with my treatments- No unmanageable side affects other than ED due to the Hormone Therapy. I'm using the pump and taking Viagra. So far minimal hair loss, though I do have Chemo Brain for a week after treatment. Only one more Chemo to go!

R
7-11-06: PSA Jumps from 2.7 in 2005 to 6
09-06-06: TRUS Gleason 4+5, staged T3
09-21-06: Consults in Austin with Neurosurgeon and Oncologist
10-19-06: RPT in Austin
10-21-06: Discharged- post surgery Pathology 4+9 Gleason, T3B,Penetrated Seminal Vesicles and soft tissue, no lympth node involvement positive margins
10-30-06: Catheter Out
11-09-06: Total Body Bone Scan (normal)
11-30-06: PSA <.1
12-07-06: Oncologist treatment begins in Austin
Began Chemo (Taxotere)
Began Hormone Therapy (Lupron IM, Casodex) Two year program
12-10-06: Basically Continent

Radiation to begin around 3-1-2006

Posted 1/22/2007 12:56 PM (GMT -6)
Hi R,

I am glad to see that you found this site. I have found it to be pretty helpful. There is a lot of good information and advice here. It is also nice to talk about this stuff with people who completely understand what you are going through. It is a nice place to just let go and vent your frustation.

As you can see, I started this thread to help me (and I hope others with positive margins or other signs of impending future recurrence) to weigh the pros and cons of whether or not to attack any remaining cancer aggressively right now or whether to wait until our PSA goes up (which if we are lucky might never happen.) On the positive side, starting treatment immediately might save or extend your life by killing any remaining cancer cells before they move further away from the prostate area and are harder to treat. On the negative side, starting treatment right aways gives you a very high liklihood of significant side effects vs. only 50% chance (or whatever is the correct number) of recurrence.

When I first talked to you on the phone, your aggressive attack on the cancer kind of scared me. I was (and still am) having a lot of trouble dealing with the side effects and the idea of extending them or making them worse still terrifys me. However, as I have had more time to consider where I am right now I also realize that there is a very real possibility that the PCa could come back and kill me someday. I am now more receptive to consider all options than I was 30 days ago. I am not necessarily going to do it. I am just not ruling it out as strongly as I was 30 days ago.

So, I am gathering all the information that I can. I have already read Patrick Walsh's book and I just bought Dr. Scardino's book a few days ago and am about to start reading it. Of course these books mostly discuss round one treatment and we are talking about round two after you already did the surgery. Did you find any other books or resources helpful in making your decision or did you mostly go with recommendations of your doctors? I am kind of a high information person so getting multiple inforamation sources is helpful to me.

I intend for this to a major topic of conversation at my next urologist appointment and I am trying to learn all that I can in preparation.

As I have said on the phone several time, I sure appreciate your advice and support over the past few months. Thanks for joining the dialog on this thread. My best to you and your better half.

B


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Post Edited (BenEcho10) : 1/22/2007 6:31:13 PM (GMT-7)

Posted 1/22/2007 7:16 PM (GMT -6)
By the way- I discussed your situation with the oncologist I am using- her main comment was that you consider taking action as soon as there is any movement in your PSA- and not necessarily wait for any pre-defined level. Food for thought?

Unfortunately you and I will never be cured (based on our Gleason/Staging)- so we can only hope to keep it in check, and as my Oncologist says, ready for what ever improvements in treatment occur in the next ten years!

We both are fortunate to have partners who are helping to look after us!

R
7-11-06: PSA Jumps from 2.7 in 2005 to 6
09-06-06: TRUS Gleason 4+5, staged T3
09-21-06: Consults in Austin with Neurologist and Oncologist
10-19-06: RPT in Austin
10-21-06: Discharged- post surgery Pathology 4+9 Gleason, T3B,Penetrated Seminal Vesicles and soft tissue, no lympth node involvement positive margins
10-30-06: Catheter Out
11-09-06: Total Body Bone Scan (normal)
11-30-06: PSA <.1
12-07-06: Oncologist treatment begins in Austin
Began Chemo (Taxotere)
Began Hormone Therapy (Lupron IM, Casodex) Two year program
12-10-06: Basically Continent

Radiation to begin around 3-1-2006

Posted 1/22/2007 8:36 PM (GMT -6)
R,

Regarding your last comment on our wives, ain't that the truth. I could not have gotten through this without her. She has been by my side every step of the way.

 
Thanks for talking to your oncologist about my situation. I appreciate that. We have already decided to respond pretty aggressively if my PSA increases. The question that I am wrestling with now (and that you have already decided for yourself) is whether to initiate further treatment now even before the PSA increases. Both my surgeon and my urologist say to wait (but have never said for how long) but I am going to push this harder on my next appointment plus have my urologiest walk me throught the nomographs that calculates the odds of recurrence for my situation. I read the odds at somewhere between 50% to 75% chance of recurrence within 7 years. I am not sure that I am reading them right so I hope that it isn't quite that bad.

B


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 1/23/2007 9:25 AM (GMT -6)
First of all, Ben, this is such a great thread. When I found these wonderful people back in June/July, there were only 7 pages of posts! Most, if not all, here at that time had been on the fortunate side with a "contained" diagnosis. We waltzed in here with our little 10% postive in one core and thought we'd skate on through, too. Never did we imagine otherwise until the path report. So, it's good to have such a sold and well-rounded base of information here in each and every thread.

If our PSA had come back anything but undetectable, we would certainly institute some action. As long as it stays undetectable, we will watch and wait (based on advice from surgeon and what we know at this point). Swim also reiterated that undetectable means pretty much that it doesn't exist - and it may never return. Yes, this cancer will always be with us; we just hope it minds its own business and leaves us alone.

In the meantime, there is always the possibility of alternative treatments (as opposed to the aftermath and potential for further damage from radiation/hormone/chemo) arriving on the scene.
Husband age 65
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06
T2a (at biopsy)
T4c (at pathology) w/cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now
 

Posted 1/23/2007 3:24 PM (GMT -6)
GreenAcres,

I totally agree about what a great forum this is. I felt lost before I found this. It is so wonderful to be able to talk to others about our issues and concerns.

So far my surgeon and urologist say the same as yours - no further treatment at this time. My surgeon told me this in early November at the same time that he told me that I had positive margins so I was too stunned to ask any questions. My urologist told me this in mid December and I just wasn't ready to face the thought of further treatment at that time so I again asked no questions. My next appointment with my urologist is February 12th and I am going to do a lot of reading and research before that one. I have read Walsh's book twice and am now about five chapters into Scardiono's book which I just purchased. I will also do a lot of internet research including this thread.
 
I want to make sure that there is no downside to waiting until after your PSA increases (hopefully never) before initiating further treatment. I sure am hoping that is the conclusion that I reach on my second look at this whole situation but I am going to be a lot more knowledgible going into the discussion this time around.

Here's hoping that we all stay at <0.1.

Ben


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Post Edited (BenEcho10) : 1/23/2007 1:26:44 PM (GMT-7)

Posted 1/23/2007 10:37 PM (GMT -6)
Hi again guys,

I am continuing to read other threads and pull out items related to positive margins and also to follow-up treatment following surgery. I also want to be real clear that I am sometimes only extracting that portion of a much longer posting that relates to this thread and leaving out all the rest. It occurs to me that this might annoy or upset some of you whose postings I have “chopped up.” I really apologize if that is the case. I am only try to collect all related postings in one place and this seemed the easiest way. If someone wants me to delete a posting of theirs that I "chopped up" let me know and I will delete it.

Anyway, here are the new postings that I found:

Ben


******************************

THREAD: Low Testosterone. POSTED BY: JazzInJay DATE: 01/09/07

. . . I had my prostate removed now about 3 years . . . Feb 04 . . . (I am now considering) some radiation treatment because my PSA rose from 0.1 to 0.2 The doctor I have now is going for radiation because he stated better to be safe than sorry. To soon to tell what it might be (prostate tissue or few cancer cells)....but if it is cancer again it will kill those remaining cells. . . .


******************************

THREAD: Low Testosterone. POSTED BY: Swimom, DATE: 01/09/07

Jazzinjay,

. . . I question whether you need further treatment just yet with a PSA of .2. How long did it take for your PSA to begin rising and how quickly has it risen? I am thinking it should be watched a "little" longer to see if this really is a rise or perhaps a little prostate tissue left behind. Remaining tissue is always a possibility, especially where nerve sparing was done.

Taking care of yourself is certainly having a good effect on you so keep doing what you're doing. IF, there is a recurrence, you will be physically ready for any treatment. We'll all wish the best that treatment is a long ways away yet....or not necessary at all!
. . .

Swim


******************************

THREAD: Low Testosterone. POSTED BY: JazzInJay DATE: 01/10/07

swim

I was -0.1 psa for two years post op. Then at about two and a half years I tested at 0.2, and then at three years it actually went down to 0.12! The doctor still wants me to start radiation treatments. I'm not sure it is the right course of action just yet. But he seems to feel any reading other than -0.1 is a bad sign. So when you think about it I guess it is a big difference between -0.1 and 0.12...and let's not forget when it was 0.20. I just hate to go through radiation if it is not necessary. But no one can tell me that for sure...not even the doctor. His stand is better safe than sorry! Would like to hear any advice out there!!!

Thanks Jeff

******************************

THREAD: Low Testosterone. POSTED BY: Swimom DATE: 01/10/07

Safe than sorry? Jeff, are you sure you wouldn't like a second opinion on this? Maybe he's right but radiation is not like popping a vitamin. It's an invasive treatment with potential effects that aren't so fun to endure.

How long is your PSA doubling time right now Jeff? Protocols are saying sooner than later however, if it's a slow rise and you can buy a little more freedom by waiting until the PSA is .4 or .5 then buy that time. There are a lot of cases where a man's PSA edges up slightly but stays there for years or for good. If the rise is happening faster than 10 months then perhaps go ahead and do radiation now. In the mean time......and there is a mean time! Get into LEF (Life Extension Foundation) and read about Modified Citrus Pectin. I think you may be interested. Also, get a copy of your records and get a second opinion. Your Doc is the man you need to trust but a second opinion is still a smart thing to do. Hang in there Jeff.

swim



******************************

THREAD: Low Testosterone. POSTED BY: Pete’s Co-Pilot DATE: 01/10/07
Jeff,
I hope you'll take Swim's advise and consider a second opinion. Radiation soft tissue necrosis is one of the possible side effects and it's definetly one of uglier ones to endure and treat.
Research your options, be pro-active in your health care program and THEN decide with your doctor which option(s) might be available to you. If it turns out radiation IS the right choice, then at least you'll KNOW it, can make an informed, educated decision and won't be left feeling "What if...If I'd only...would've, should've, could've".
A little "doctor" story for ya.. Once upon a time, I was caring for a young horse (5 yrs old) that was exhibiting symptoms of Cushing's Disease. Cushing's in horses is considered to be a more common condition in the "geriatric" horse - not unlike the PC problem in older men attitude, "Most of them will eventually get it"
Anyway, I had the vet come out, told him what I knew and requested he draw blood to confirm my dx. (no, I'm not a vet). He argued all the points - horse too young, never see Cushings @ this age, might be this, might be that.... "Humor me, will you doc? Just pull a couple vials and sent them off to Cornell, ok?"
When the blood work came back positive for insulin resistance, you better believe that vet was absolutely floored! But to his credit, he sucked in the "Dr." ego and said "Thank you! Sometimes I get "tunnel vision" and set on a certain path, not seeing or LISTENING to the caregivers who know my patients so well". He then proceeded to prescribe pergolide mesylate, a common treatment option for the condition. Already having done my research, my immediate reaction was to wait. I told him, "No, I 'm going to change his feed program - strict diet of beet pulp, (no grains) orchard grass/timothy hay (no alphalfa allowed), no carrots, cookies, treats of any kind. Let's re-test in 6-8 weeks and see if his glucose/cortisol levels come down". They did (but you knew that!) and 2 years later this horse is thriving and leading a wonderful life as a police mount!
The moral of the story; be a skeptic, get informed, weigh your options and then make your choice - in the end that's what it is...your choice.
Stay strong! ________________________________________
Pete's Co-pilot,
Lisa

******************************


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Post Edited (BenEcho10) : 3/10/2007 11:46:50 AM (GMT-7)

Posted 1/31/2007 2:05 PM (GMT -6)
I am going to bump this up to the top so Hawkfan can easily find it.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 3/4/2007 4:13 PM (GMT -6)
Here is an update on my research:

#1: From what I read, based on my positive margins and Gleason 10, my odds of recurrence within 7 years are about 96%. Having radiation (and perhaps hormone and chemo) will reduce the odds of recurrence. However (and this is very important) even though your reduce your odds of recurrence my online research shows no consensus that this has any for certain impact on long term survival.

#2: My locals docs indicate that I should consult with an oncologist (and probably have radiation) and we are still debating whether or not to do this.

#3: However, my Johns Hopkins surgeon says that Johns Hopkins reseach suggests not to have radiation (and near certain damage) until after the PSA rises. We flew half way across the country for the expertise of Johns Hopkins and we are leaning towards doing it their way.

We are still considering what to do but we are currently leaning towards doing nothing until the PSA rises.

Please note that a critical factor in my personal situation is that the cancer escaped my prostate (as evidenced by the positive margins) but it did not show any signs of having taken hold anywhere outside the prostate. If you have signs that your cancer took hold somewhere outside the prostate (the most common symptom would be seminal vesicle invasion) then waiting may not be a good idea. You may need further therapy right away even if your PSA is 0. Obviously you should talk to your doc about this and possibly see an oncologist.

Good luck to all,

Ben


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Post Edited (BenEcho10) : 3/4/2007 2:17:49 PM (GMT-7)

Posted 3/5/2007 11:16 AM (GMT -6)
Very good thread--- I'm a "periodic" poster, so I just came across your thread....
 
My 2 cents worth....
 
I'm in a real similar situation, just a bit ahead of you on timeline...   the "positive margin" thing is a dilemma because there are conflicting opinions .....
 
After reading through all the information, I drew the line at a PSA post-surg of over .2, which I had 5 months after my RP.  My oncologist/radiologist seemed more concerned over my young age and high pre-surgery PSA than he was over the PSA reading... we decided on 36 IMRT treatments two 3-month shots of Zoladex...
 
I'm a month past the IMRT and just had the second Zoladex shot on Friday.   Am pleased to report the radiation was not bad at all--- limited side effects so far (they can acculate for quite some time), but nothing horrible.   HT sucks (hot flashes, loss of libido), but in the grand scheme of things, nothing horrible... plus I'm only on it for 6 months...other than that, I feel great --- HAPPY TO BE ALIVE!
 
Have no idea if this helps --- but I did a lot of reading and posting and feel very comfortable with my treatment course so far.....Looks like our reasoning is about the same--- GOOD LUCK! 

Sterd82
Age 46
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sesions of IMRT Ended Feb 1, 2007

Posted 3/5/2007 12:39 PM (GMT -6)

Hi Ben,

in about an hour I will be in front of my oncologist.  I have three margins positive, and the the seminals fully involved.  I don't believe I have a waiting option.  Today we are deciding on what to do.  The doctor will give us our three options, radiation, Taxotere, HT and what order would be best. We may decide on the "dam the torppedoes" approach.    We are considering experimental treatment as well.  Will keep you posted.

Age 44

Surgery 2/16/07

Post Op

T3B N0 Mx

Gleason 4+3=7

Three margins positive, seminals involved

PSA on 2/28 is .9, hopefully falling.

Posted 3/5/2007 5:20 PM (GMT -6)

BenEcho:

It appears that you have done alot of research.  Have you checked into the www.protonbob.com website.   They do alot of surgery salvage at Loma Linda and I'm sure there are some testimonials on the website with telephone numbers where you could talk to men who have had the proton after surgrery.

Best of luck with whatever decision is best for YOU.

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.

Posted 3/5/2007 9:19 PM (GMT -6)
Unfortunately, a significant number of us RP patients have positive margins.  People tend to look at the odds, and assume that it will not be them, but it appears to be many.  I had one positive margin but my seminal vesicles and lymph nodes were cancer free, so I opted for "adjuvant radiotherapy"  beginning about three months after surgery.  I had a total of 65 Gray of RT.
 
The research I found indicated that RT is better sooner rather than later.  For example, see JAMA, March 17, 2004--Vol 291, No 11.
 
It is well established that hormone therapy does not cure cancer, but may slow its growth.  Since my PSA has been undectectible since surgery, I elected to not have the hormone treatment.  My surgeon recommended against the hormone therapy and I will not consider it unless my PSA rises.
 
Best to all.
 
Allan
Posted 3/5/2007 10:32 PM (GMT -6)
Sterd82: Thanks for your comments. It is very helpful to talk to others in our exact situation isn't it? Did you research the different types of radiation available? I haven't really started looking into that yet?

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 3/5/2007 10:35 PM (GMT -6)
TC,

If my seminal vesicles had been involved, I think that I would not be 50/50 about radiation like I am right now. I think that I would be about 90/10 in favor. I hope that you have a productive meeting with your oncologist.

I will be curious to hear what your oncologist suggests. Do you know if oncologists specialize like in Prostate Cancer or do this do all kinds of cancer? So far, I have been told that they do not specialize but I was curious about this.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 3/5/2007 10:36 PM (GMT -6)
Dutch,

Thanks for the info. I will look at that web site. I keep hearing about Loma Linda. It must be a top notch place.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 3/5/2007 10:40 PM (GMT -6)
Hi Alan92,

I know what you mean. There do seem to be more guys with positive margins than I would have expected. I will look at the JAMA article that you mentioned.

Thanks for the information.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 3/6/2007 7:40 AM (GMT -6)

Ben,

I did some comparisons between IMRT and proton radiation.  I spoke with people at both Loma Linda and at Indiana University Medical Center in Bloomington, Indiana regarding proton radiation.

As an aside, has anyone else noticed the "sales pitch" you tend to get when you're really just trying to get information from these places?  I'm in sales myself --- so maybe I just noticed it more!

This is my (imperfect) take on things:

Loma Linda has the most experience of any place in the Unitied States -- because they were the first to do proton radiation.  Bloomington (whcih is 3 hours away from my home) has been up and running around 5 years-- give or take.  I really liked what I heard on the proton side of things --- POTENTIALLY fewer side effects in that the treatment field can be more finely controlled.   Most of the prostate cases at both insitutions were guys in for PRIMARY treatment, with a minority in for salvage treatment like I was exploring.  There's a newer facility in Florida, and I THINK facilities in Texas and Boston --- I didn't check into those.

I opted for IMRT for the following reasons:

1) IMRT radiation is widely availalbe -- I live in a city with "regional" facilities, so my treatment center was 10 minuntes from my home.

2) IMRT has a good reputation for few side effects --- I'm only a month past treatment but am happy to report I had very few side effects (SO FAR!)

3)  The main side effect I'd be concerned about is maintaining long-term potetncy.  Incontinence and bowel damage are a lot less frequent.  My RP was non-nerve sparing (pre- surgery PSA of 39 convinced me to go this route) -- so potentcy was not in my equation.

4)  Loma Linda had a fair amount of data on patients seeking salvage prostate therapy.  Bloomington did not seem to have a lot of patients in their history for salvage therapy.

5)  Sometimes traditional radiation is used in conjunction with the proton therapy.

6)  IMRT was definitiely covered by my insurance.  Proton thereapy was going to have to be submitted --- it was a maybe/mayebe not proposition.  My employer also self insures a lot of our medical.  IMRT was through the roof on cost--- I couldn't imagine what proton beam would have been. 

Overall, I think proton beam therapy is superior due to fewer side effects.  In the end, the "tie breaker" for me was being treated local.  I could have, but just didn't feel like camping out away from home for 7 weeks for the additional potential benefits of the proton radiation.  But that's ME --- I also had my RP locally for similar reasons ---(plus the fact that my PSA jumped from 24 to 39 in a one month intreval --- I was in a rare prostate instance where time REALLY was a factor in my view). 

Also, I didn't see a "cure" advantage in one method over another.  If my disease progresses from here, I'm willing to bet that it's because cancer cells had already escaped the pelvic region and had already begun metastasizing --- NOT because of my choice of radiation treatment.  I DID opt for a six month hormone therapy course in conjunction withy the radiation treatment in the hopes of weakening the cancer even more so the radiation could have its best shot.... and MAYBE starve out any little beasties on the run!

Hope this helps....GOOD LUCK!

 

  

 

 


Sterd82
Age 46
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sesions of IMRT Ended Feb 1, 2007

Posted 3/6/2007 7:06 PM (GMT -6)
I had the IMRT (65 Gray) and the side effects were mild fatigue late in the treatment plus more frequent urination.  It also seems to have stopped my recovery of erections.  So, you do pay a price although I don't have the fatigue or frequent urination anymore.  I expect to be taking screw shots (Trimex) for the forseeable future.  But I will have no complaints if I continue to be cancer free with normal urination. Sex is fine with the Trimex, you get a full erection in a few minutes.  Better than walking around in a blue haze from the pills, IMHO.
 
I would encourage everyone to consider RP, especially at Johns Hopkins, but get the best "staging" you can to make sure the cancer is organ confined.  I think the MRI has a lot of promise for better staging but right now diagnosis is subjective.  I had three oncologists and two urologists tell me than my disease was organ confined.  Go figure.
 
Best to all.
 
Allan
Posted 3/6/2007 11:41 PM (GMT -6)
Ben
As you can see form my new thread and signature below, I had good news - PSA 0.01.  I talk to my doctors next week, but from what I've read, it's now time to get healthy and keep the other eye on the PSA.  Since I'm a gleason 7 (3+4), Dr. Walsh's book and studies from John Hopkins indicate that waiting until a possible rise in PSA won't change overall cure rates.  Of course, I'll listen to all the doctors, but my feelings right now are to wait.  Thanks for putting this thread together - we know how scary it is when that post surgery pathology report is much worse than ever expected.  I thought I was being over agressive by choosing surgery when my initial biopsy showed only a very small amount of cancer and my PSA 4.7.  Put that with the fact that it was the other side, the one with clear core samples, that had the most cancer and the positive margin.  Anyone choosing watchful waiting for early stage prostate cancer is playing Russian Roulette with their lives!
Thanks again for keeping this thread going, and I'll keep all in here in my thoughts and prayers. 
PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006
1 of 10 cores positive 5% LEFT Side
2 others questionable (small gland proliferation)
Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology
     Stage T3a, Gleason 3+4, positive margins and
     capsular penetration RIGHT Side
Post Surgery PSA:  March 5:  0.01

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