Medical Forum / Diseases and Disorders / Prostate Cancer / July 2007
I Could Use Some Opinions At This Point Please...
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Paul - 07 May 2007 11:55 GMT Okay gang, I need some opinions. First a refresher:
45 yrs old PSA 4.7 2/06
Biopsy 12 cores Base - 3+3 10%,3+4 25%,3+3 25%,3+3 25% Mid - 3+3 25%,Benign,3+3 60%,3+3 50% Apex - Benign,Benign,Sespicious,Benign
Local urologist feels that based on numbers, there's a good chance that it is confined. Now I'm at the agonizing point of deciding treatment.
With consultations based on the aforementioned numbers (I have an eMRI and bone scan coming in a couple of weeks), for robotic surgery I consulted with a highly regarded robotic surgeon whom I felt comfortable with. I've consulted a medical oncologist whom also made me feel comfortable. I am about to speak with someone currently being treated with PBRT at Loma Linda.
My question is, what do we know of PBRT? I understand the science of the Proton vs. the Photon etc. has anyone here had this treatment as opposed to conventional radiology?
I am leaning towards robotic surgery for the reasons that at my age, I'm concerned about what collateral damage I'd incur from radiation, and I figure if I had the RLRP and start to show a PSA score down the road, then I could opt for radiation at that time. FWIW I'm 6ft 195 and I'm keeping a regular exercise routine, so I feel physically I am in a good position for surgery. I've opted not to explore cryosurgery or seeding.
Of course, my mindset is that if additional cancer shows in the eMRI and bone scan that I might change my outlook as I am ultimately trying to match the best possible treatment for my situation.
Thanks as always for sharing your knowledge and experiences. I've already started my part by chirping in guys ears and two actually went and got screened and were clean!
c palmer - 07 May 2007 12:19 GMT Okay gang, I need some opinions. First a refresher: 45 yrs old PSA 4.7 2/06 Biopsy 12 cores Base - 3+3 10%,3+4 25%,3+3 25%,3+3 25% Mid - 3+3 25%,Benign,3+3 60%,3+3 50% Apex - Benign,Benign,Sespicious,Benign Local urologist feels that based on numbers, there's a good chance that it is confined. Now I'm at the agonizing point of deciding treatment.
My question is, what do we know of PBRT? I understand the science of the Proton vs. the Photon etc. has anyone here had this treatment as opposed to conventional radiology?
I am leaning towards robotic surgery for the reasons that at my age, I'm concerned about what collateral damage I'd incur from radiation, and I figure if I had the RLRP and start to show a PSA score down the road, then I could opt for radiation at that time.
I feel physically I am in a good position for surgery. I've opted not to explore cryosurgery or seeding.
Of course, my mindset is that if additional cancer shows in the eMRI and bone scan that I might change my outlook as I am ultimately trying to match the best possible treatment for my situation.
==> hi paul - your thinking is a little bit off.
PBRT and radiation is basically the same thing. the body is going to react to it the same way. PBRT can control the depth of the penetration whereas the RT passes through the body. that is what if you have PBRT, i don't think that RT would be an option.
you are the one who is going to have to look at the man in the mirror and tell him that you did the best that you could for your body. in my case, i did not want the option i chose, but i knew that it gave my body the best chance for survival and i have a clear mind because of it.
as to your being concerned about collateral damage..... EVERY treatment has collateral damage. it just varies both as to what damage you will have and how long it takes to happen.
on surgery, choose your surgeon wisely because you are only going to have the one chance to get to not only get the cancer but to minimize the collateral damage.
hope this answered your concerns...
~ curtis
knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc
Paul - 07 May 2007 22:31 GMT >Okay gang, I need some opinions. First a refresher: >45 yrs old [quoted text clipped - 50 lines] >invariably fatal. Prostate cancer is only sometimes so." >http://community.webtv.net/PALMER_ENT/doc Curtis,
Thank you for your comments and the clarification on PBRT and RT. I do understand that every treatment has collateral damage, I just worded it poorly. Heck if there was one that didn't, I'm sure there'd be a lot less discussion here :)
All the best to you.
Leonard Evens - 07 May 2007 14:03 GMT > Okay gang, I need some opinions. First a refresher: > [quoted text clipped - 36 lines] > already started my part by chirping in guys ears and two actually went > and got screened and were clean! I think your choice of surgery makes sense. At your age you should recover quickly and, if the surgeon is skilled, the risks of side effects reasonably small. You should try to find the surgeon with the best track record you can find in treating patients like yourself and not get hung up on the surgical method. Recovery from RLRP may be a bit faster, but by itself that shouldn't be an argument for choosing it over straight RRP.
Paul - 07 May 2007 22:31 GMT >> Okay gang, I need some opinions. First a refresher: >> [quoted text clipped - 44 lines] >bit faster, but by itself that shouldn't be an argument for choosing it >over straight RRP. Thank you Leonard.
jloo - 07 May 2007 15:20 GMT Hello Paul, I was diagnosed when I was 49 and also had options on my mind. Being uneducated about all aspects I chose External Beam Radiation......... Thanks to this news group and becoming more educated I went on to see other Dr.s and avenues of treatment. I chose RP and now about 7 to 8 years out....I am glad I did. I do not know the differences concerning Robotic vs Standard RP but I do know it is best to choose a surgeon that is "highly experienced" in this field. I feel that the collateral damage was minimal. Where are you located? Good wishes on your decisions and outcomes. John Loomis
> Okay gang, I need some opinions. First a refresher: > [quoted text clipped - 36 lines] > already started my part by chirping in guys ears and two actually went > and got screened and were clean! Paul - 07 May 2007 22:31 GMT >Hello Paul, >I was diagnosed when I was 49 and also had options on my mind. Being [quoted text clipped - 10 lines] >John Loomis >> Okay gang, I need some opinions. First a refresher: John,
Nothing like facing this in your 40s huh.... I'm just outside of NYC, so the options are there for me. Thanks for your input.
>> 45 yrs old >> PSA 4.7 2/06 [quoted text clipped - 34 lines] >> already started my part by chirping in guys ears and two actually went >> and got screened and were clean! jloo - 08 May 2007 01:51 GMT Yeah.....I was amazed when I was 49 and dealing with the problem when other men were much older. Anyway I have learned since it can affect men at an early age.... Keep up the learning curve and you will beat this beast. Make sure you see a prostate cancer specialist. I am sure you are. John Loomis
>>Hello Paul, >>I was diagnosed when I was 49 and also had options on my mind. Being [quoted text clipped - 55 lines] >>> already started my part by chirping in guys ears and two actually went >>> and got screened and were clean! ron - 07 May 2007 15:47 GMT Hi Paul...My comments are inserted within your post...Best wishes and good health, ron
> Okay gang, I need some opinions. First a refresher: > [quoted text clipped - 5 lines] > Mid - 3+3 25%,Benign,3+3 60%,3+3 50% > Apex - Benign,Benign,Sespicious,Benign There is a significant amount of PCa in several of your biopsy cores. It would be prudent to send these samples out for an expert reading to make sure there aren't any higher Gleason grades, and that the apex is clean. Search "expert pathology" within this list and you'll get some names as well as info on how to proceed.
> Local urologist feels that based on numbers, there's a good chance > that it is confined. Now I'm at the agonizing point of deciding > treatment. Hmmm, assuming your you are T1c (no abnormalities found on DRE) and that your Gleason scores are correct, the Partin Tables (Partin II) put you at 52% chance of organ confined.
> With consultations based on the aforementioned numbers (I have an eMRI > and bone scan coming in a couple of weeks), for robotic surgery I [quoted text clipped - 6 lines] > the Proton vs. the Photon etc. has anyone here had this treatment as > opposed to conventional radiology? Take a look at
Int J Radiat Oncol Biol Phys. 2004 Jun 1;59(2):348-52; Proton therapy for prostate cancer: the initial Loma Linda University experience; Slater JD, Rossi CJ Jr, Yonemoto LT, Bush DA, Jabola BR, Levy RP, Grove RI, Preston W, Slater JM.
to get an idea of the range of experiences from "Proton Beam". BTW, most "Proton Beam" used in the above study at LL is actually a mix of proton and photon.
Further, you are a very young man. The risk of secondary cancers following RT is something to be aware of in your case. Also I assume that you have no urinary difficulties and no small vessel disease such as diabetes. RT would be contraindicated if such comorbidities were present.
> I am leaning towards robotic surgery for the reasons that at my age, > I'm concerned about what collateral damage I'd incur from radiation, [quoted text clipped - 3 lines] > in a good position for surgery. I've opted not to explore cryosurgery > or seeding. If you are talking to Menon, Tewari or other robotic practioners of that caliber, then you're in good hands. I still have a concern with lap and robotic procedures in that they can have margin problems at the apex. That was why I noted above that a clear reading in the apex would be significant. Being young and in good shape, even with the standard "open" RP, you'd probably be out of the hospital in two days, back at work in two weeks or less, and starting to work out again in 6 weeks.
> Of course, my mindset is that if additional cancer shows in the eMRI > and bone scan that I might change my outlook as I am ultimately trying [quoted text clipped - 3 lines] > already started my part by chirping in guys ears and two actually went > and got screened and were clean! Steve Jordan - 07 May 2007 18:13 GMT On May 7, Ron wrote. in pertinent part:
(snip)
> There is a significant amount of PCa in several of your biopsy cores. > It would be prudent to send these samples out for an expert reading to > make sure there aren't any higher Gleason grades, and that the apex is > clean. Search "expert pathology" within this list and you'll get some > names as well as info on how to proceed. Here's a list:
Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162 (Dr. Epstein does not do ploidy analysis) David Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839
I recommend that Paul consult the authoritative Prostate Cancer Research Institute (PCRI) at: http://prostate-cancer.org/index.html ....and see the section "Newly Diagnosed" for excellent information.
Paul might also find it helpful to meet with others in the same situation at the local chapter of the support group Us Too International. He can find a chapter on their website at: http://www.ustoo.com/
Regards,
Steve J
Paul - 07 May 2007 22:31 GMT >Hi Paul...My comments are inserted within your post...Best wishes and >good health, ron [quoted text clipped - 14 lines] >clean. Search "expert pathology" within this list and you'll get some >names as well as info on how to proceed. The slides were sent to Dr. Tewari (he's the Dr. that would do the procedure if I so choose) for further evaluation.
>> Local urologist feels that based on numbers, there's a good chance >> that it is confined. Now I'm at the agonizing point of deciding [quoted text clipped - 3 lines] >that your Gleason scores are correct, the Partin Tables (Partin II) >put you at 52% chance of organ confined. Which I guess isn't all that great, but considering that my Dad was diagnosed when the cat was out of the bag already, I'll consider myself lucky.
>> With consultations based on the aforementioned numbers (I have an eMRI >> and bone scan coming in a couple of weeks), for robotic surgery I [quoted text clipped - 23 lines] >as diabetes. RT would be contraindicated if such comorbidities were >present. No diabetes, and I had no urinary problems. The only thing that is different for me now, is that after 30 days of Levaquin, the head of my penis has gone from its normal skin tone to a more purplish tone. I still urinate without issue and lately have not been getting up during the night (it was once a night there for awhile).
>> I am leaning towards robotic surgery for the reasons that at my age, >> I'm concerned about what collateral damage I'd incur from radiation, [quoted text clipped - 12 lines] >back at work in two weeks or less, and starting to work out again in 6 >weeks. As previously stated, it is Tewari. I was very pleased with my initial visit with him and his staff. Thanks for the insight!
>> Of course, my mindset is that if additional cancer shows in the eMRI >> and bone scan that I might change my outlook as I am ultimately trying [quoted text clipped - 3 lines] >> already started my part by chirping in guys ears and two actually went >> and got screened and were clean! CW89134 - 07 May 2007 15:53 GMT > My question is, what do we know of PBRT? I understand the science of > the Proton vs. the Photon etc. has anyone here had this treatment as > opposed to conventional radiology? Hi Paul:
My husband (also named Paul) is currently undergoing proton treatment at Loma Linda. Therefore, I can't tell you the end results but I can tell you what our thinking process was in coming to this treatment decision.
First of all, my Paul is older than you. He will be 65 in a few days. He is not an ideal candidate for robotic surgery (weight, hypertension etc.) so we eliminated that option. We met with a medical oncologist who specializes in pca. He recommended IMRT and/or seeds. Paul spoke to about 10 men who had been through proton treatment at Loma Linda before coming to a decision. Without exception, all had positive things to say. They all said that they had experienced few, if any, side effects during and after treatment.
So far, Paul has received 25 out of a total of 42 treatments. The normal course is 44 (or 45, depending on which doctor is treating you) treatments but Paul has an artificial hip and therefore has a special treatment plan. His PSA was 3.5 (3.14, two days before the positive biopsy) and so the LL doctor feels that the slightly reduced total dose will provide good control over the pca. Time will tell.
The only side effects, so far, are minor urinary ones. Flomax is helping with that.
Paul suggests that you visit the Proton Bob website if you have not already done so:
http://www.protonbob.com/proton-treatment-homepage.asp
If you go to the Contact Us page, there is an email link to Bob Marckini - aka "proton Bob". Bob gave Paul names, phone numbers and email addresses of men who had already gone through proton treatment at LL.
I have set up a blog that chronicles our time and adventures here. The address is:
http://paulsprotontreatment.blogspot.com/
If you read this, start with earliest posts and work your way to the present.
Hope this helps.
Paul - 07 May 2007 22:31 GMT >> My question is, what do we know of PBRT? I understand the science of >> the Proton vs. the Photon etc. has anyone here had this treatment as [quoted text clipped - 45 lines] > >Hope this helps. Thanks C for sharing your experience and the links. I will certainly check them out.
Alex - 07 May 2007 16:25 GMT > Okay gang, I need some opinions. First a refresher: > [quoted text clipped - 36 lines] > already started my part by chirping in guys ears and two actually went > and got screened and were clean! For DaVinci robotic laparoscopic surgery, you probably should include Dr. Mark Kawachi at City of Hope among those you investigate. He's done many, publishes his findings regularly, and is regarded as one of the top folks in the nation in DaVinci LP.
Alex
Paul - 07 May 2007 22:31 GMT >> Okay gang, I need some opinions. First a refresher: >> [quoted text clipped - 43 lines] > >Alex Alex,
I'm in consultation with Dr. Ash Tewari of NYPH Cornell, who supposedly has upwards of 1000 of these under his belt. Thank you for your suggestion.
chasjac - 07 May 2007 17:53 GMT > Okay gang, I need some opinions. snip]
> ...I figure if I had the RLRP and start to show a PSA score down the > road, then I could opt for radiation at that time. That, for me, was the ultimate deciding factor. Most of the literature seems to suggest that cure rates and SEs for the major treatments are comparable, so I figured that with surgery, if it was going to fail, I'd know that it had failed sooner than I would with radiation, and could make the next round of treatment decisions that much sooner.
[snip]
>I've already started my part by chirping in guys ears and two actually went > and got screened and were clean! Hey, good for you! I've spoken here at the college about my own experiences, and have gotten a few of my male colleagues to get themselves checked out. I've also become a sort of unofficial counselor for men with various prostate troubles. It's a good feeling to be able to help out, especially when the news is good, eh?
--charlie
Paul - 07 May 2007 22:31 GMT >> Okay gang, I need some opinions. >snip] [quoted text clipped - 21 lines] > >--charlie Charlie, I've gotta tell you it made me feel good to see a couple of guys go. Some guys my age yes me and think I'm just blowing smoke, but I'll still do what I can to increase awareness.
glassman - 07 May 2007 19:16 GMT > Okay gang, I need some opinions. First a refresher: > > 45 yrs old > PSA 4.7 2/06 Paul you sound like you've already done your research on this. Bravo.... most that post here on diagnosis aren't half as together as you are. In my opinion surgery is the way to go. At your age you should come out of this just fine. Keep us posted.
 Signature JK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com
ronju99 - 08 May 2007 00:18 GMT Hi Paul, Looks like your surgeon has done on average one every working day for the past four years since RLRP has been around. Of course if he does more than one a day then he wouldn't have to have practiced as long. Do we know when he started RLRP?
Just an observation.
Ron S.
Paul - 08 May 2007 11:50 GMT >Hi Paul, > Looks like your surgeon has done on average one every working day for the [quoted text clipped - 5 lines] > >Ron S. Ron,
Here's a URL that includes a brief biography link on him:
http://www.theehealth.com/
Steve Kramer - 08 May 2007 01:24 GMT > Okay gang, I need some opinions. First a refresher: > [quoted text clipped - 9 lines] > that it is confined. Now I'm at the agonizing point of deciding > treatment. Very few here have undergone PBRT. I think only four:
cwarman89134@gmail.com CW89134 wborglum@sbcglobaldot.net Desert Denizen keith340@webtv.net Keith Lundy jeffbalfoort@yahoo.com surfdog
None of these was less than 55-years-old. None have reported failure.
However, being 45 (or in my case 46) mitigated the agony of deciding. Because, at that age, surgery is the only answer when your numbers permit it.
That's my opinion, but I am not a doctor.
Paul - 08 May 2007 11:55 GMT >> Okay gang, I need some opinions. First a refresher: >> [quoted text clipped - 24 lines] > >That's my opinion, but I am not a doctor. Steve,
Well I pretty much feel the same way. Btw, I've never asked anyone this, what symptoms did you have leading to diagnosis? I'm not kidding myself that pathology lies, but I feel remarkably good for a guy with cancer....
Steve Kramer - 08 May 2007 19:13 GMT > what symptoms did you have leading to diagnosis? In 1994, I had this nagging feeling in the gut of my stomach... you know that one where you feel like you are underinsured?
I was asymptomatic. The only thing that caused me to get a PSA in 2000 was life insurance. I applied for life insurance in 1994 and had to have a physical. I passed the physical, but the doc said with my family history, I should start getting checked. I had another in 1998, just to follow-up on the first. Then, in 1999, I had diverticulitus, so I sort of skipped the PSA. Then in 2000, I had another. It went from < 4.0 in '98 to 16 in '00. Biopsy followed, and the rest is history.
Wanna know how the Atkin's Diet killed me? :-)
> I'm not kidding > myself that pathology lies, but I feel remarkably good for a guy with > cancer.... You are in great shape for having cancer. Since I've been on this NG, only 2% of its members have had a Gleason lower than yours and only 15% with a smaller PSA.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum
Paul - 10 May 2007 11:22 GMT >> what symptoms did you have leading to diagnosis? > >In 1994, I had this nagging feeling in the gut of my stomach... you know >that one where you feel like you are underinsured? Not hard to feel that way in this day and age :)
>I was asymptomatic. The only thing that caused me to get a PSA in 2000 was >life insurance. I applied for life insurance in 1994 and had to have a [quoted text clipped - 3 lines] >PSA. Then in 2000, I had another. It went from < 4.0 in '98 to 16 in '00. >Biopsy followed, and the rest is history. Interesting. Since both my grandfathers died from PCa and my Dad currently is taking Chemo because of it, and his brother has it, I hedged the surest bet in my life and started screening when I was 40. This past December, I missed my annual checkup because I was busy, so when I ran out of my Statin and my PCP said I owed him blood work, I said check off the PSA box just for sh.ts and giggles... Well the joke came back on me...
Btw, my Dad had Diverticulitis, this was back in the early 80s, I hope you fared better than he did with his operation and subsequent quality of life issues.
>Wanna know how the Atkin's Diet killed me? :-) I could've told you that, my wife's a renal nutritionist. She's always bitching about so called "diets" vs. healthy "lifestyle changes" in eating. Maybe if I listened a little harder I'd not be in my predicament. I like to eat :)
>> I'm not kidding >> myself that pathology lies, but I feel remarkably good for a guy with [quoted text clipped - 3 lines] >2% of its members have had a Gleason lower than yours and only 15% with a >smaller PSA. Thanks for the encouragement. I'm doing everything I can to have a postive outlook on this.
Steve Kramer - 10 May 2007 12:17 GMT > Interesting. Since both my grandfathers died from PCa and my Dad > currently is taking Chemo because of it, and his brother has it, My father died of it at 50. My grandfather had cancer wrapped around his spine when he died of a heart attack at 72. It might have been PCa.
> Btw, my Dad had Diverticulitis, this was back in the early 80s, I hope > you fared better than he did with his operation and subsequent quality > of life issues. On Friday (Oct 17 1999) they were concerned with my life. On Saturday, they were planning my surgery. On Sunday, they were reconsidering. On Monday they released me. I've never had a problem (or peanuts or popcorn) since.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum
I.P. Freely - 10 May 2007 22:48 GMT > <Paul> wrote
>> Btw, my Dad had Diverticulitis. > > On Friday (Oct 17 1999) they were concerned with my life. On Saturday, they > were planning my surgery. On Sunday, they were reconsidering. On Monday > they released me. I've never had a problem (or peanuts or popcorn) since. That advice may have fallen by the wayside. I read in some health newsletter just last week that "they" no longer associate diverticulosis or -itis with nuts'n'seeds'n'thelike. If you really miss them, you might want to Google that ban to see whether its demise is mainstream or merely one new study without consensus.
My doc, looking at my barium enema film evidence of diverticulosis, told me to quit eating strawberries decades -- and over 50,000,000 strawberry seeds and 15,000 servings of extra crunchy peanut butter and barrels of walnuts -- ago.
I.P.
Steve Kramer - 11 May 2007 12:29 GMT > That advice may have fallen by the wayside. I read in some health > newsletter just last week that "they" no longer associate diverticulosis [quoted text clipped - 3 lines] > seeds and 15,000 servings of extra crunchy peanut butter and barrels of > walnuts -- ago. When I was undergoing my issues, they had just debunked the strawberry seed, et al. myth. My surgeon said any nut the size of a peanut or larger and popcord. I had popcorn the day before my symptoms began.
However, that was 7½ years ago. I will check on it.
Thanks.
Clarence Crow - 12 May 2007 01:09 GMT >> That advice may have fallen by the wayside. I read in some health >> newsletter just last week that "they" no longer associate diverticulosis [quoted text clipped - 7 lines] >et al. myth. My surgeon said any nut the size of a peanut or larger and >popcord. I had popcorn the day before my symptoms began. I've had diverticulos(it)is for decades and after many white-knuckle barium enemas (in the holding pattern), plus a further colonoscopy, the verdict was similar re any coarse fibre (river gravel may be OK). The 5 litres of GoLytely for the prep is not the best to party on :(- I'm up for another colonoscopy in a month or so, to see if the PCa radiation left any obstructions. (can't wait for that one!)
-Please reply to group as my email addr is fake!
-Regards CC
Paul - 10 May 2007 22:57 GMT >> Interesting. Since both my grandfathers died from PCa and my Dad >> currently is taking Chemo because of it, and his brother has it, [quoted text clipped - 9 lines] >were planning my surgery. On Sunday, they were reconsidering. On Monday >they released me. I've never had a problem (or peanuts or popcorn) since. My Dad has had to limit certain foods over the years and has one hell of a scar to remind him of the intestines they pulled out of him. Considering the era, I'd say he was lucky they didn't screw him up altogether.
I.P. Freely - 10 May 2007 22:35 GMT > my wife's a renal nutritionist. She's always > bitching about so called "diets" vs. healthy "lifestyle changes" in > eating. Maybe if I listened a little harder I'd not be in my > predicament. I like to eat :) So do I, and I do. But as your wife can tell you, there's quantity and then there's quality. I eat all I can hold -- and that's a lot -- but it's all based on the Mediterranean eating paradigm so it's prolonging, rather than shortening, my life. It's not a diet; it's an eating lifestyle -- the only one proven to extend both our lives and our health. All I omit is sat and trans fats and refined carbs, and I'm not a purist on those. I think your wife would praise my eating regimen; other professional nutritionists have, and I still eat a large pizza now and then. (Notice the "a"; When I eat pizza, I get serious about it; there's no reason "healthy eating" and "sacrificing" have to be synonymous.)
OK, I miss Haagen Dasz. It's been a whole week since I had any. And I'm about due for that pizza.
I.P.
Paul - 10 May 2007 22:55 GMT >> my wife's a renal nutritionist. She's always >> bitching about so called "diets" vs. healthy "lifestyle changes" in [quoted text clipped - 8 lines] >health. All I omit is sat and trans fats and refined carbs, and I'm not >a purist on those. I think your wife would praise my eating regimen; Yes sir, those are the three biggies, that are absolute no nos.
>other professional nutritionists have, and I still eat a large pizza now >and then. (Notice the "a"; When I eat pizza, I get serious about it; [quoted text clipped - 5 lines] > >I.P. I'm a softserve guy myself and I just came back from my two slice a week limit. I readily admit it tastes better when you don't eat the whole pie :D
quihana@yahoo.com - 28 Jun 2007 13:30 GMT Yes, I would like to hear what you have to say about Atkins!
> Wanna know how the Atkin's Diet killed me? :-) Steve Kramer - 28 Jun 2007 16:41 GMT > Yes, I would like to hear what you have to say about Atkins! >> >> Wanna know how the Atkin's Diet killed me? :-) Wow! This was a while ago.
Okay.
MAY 1999 -- I started the Atkins diet. SEPT 28, 1999 -- I had severe constipation from the diet and didn't get my PSA/DRE on or near my birthday. OCT 17, 1999 -- I ate popcorn and ended up in the ER due to Diverticulitis caused by a diverticuli (no doubt from the constipation) blocked by a kernel. OCT 20, 1999 -- released from the hospital and told no PSA for at least a couple of months. OCT 17, 2000 -- (okay, it was more than a couple of months) my PSA was 16. NOV 1, 2000 -- Biopsy NOV 3, 2000 -- Diagnosis DEC 15, 2000 -- Surgery and the cancer was "at" the margin. fast forward -- JUL 2003 -- PSA on the rise again after SRT -- cancer declared terminal.
So, if I had been operated on before DEC 15, I probably wouldn't have needed SRT. If I had had my PSA in 1999, my cancer would probably have been discovered when I was curable. If I hadn't been on Atkins, I woulnd't have missed my PSA appointment.
Really, I understand it's all a fantasy.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04 (06/12/2007) Non Illegitimi Carborundum
Peter Headland - 29 Jun 2007 17:10 GMT > So, if I had been operated on before DEC 15, I probably wouldn't have needed > SRT. If I had had my PSA in 1999, my cancer would probably have been > discovered when I was curable. If I hadn't been on Atkins, I woulnd't have > missed my PSA appointment. Nah it wasn't the Atkin's Diet - it's your dad's fault. He just had to send that XY sperm zipping along and make you a boy.
-- Peter Headland
glassman - 04 Jul 2007 04:11 GMT >> Yes, I would like to hear what you have to say about Atkins! >>> [quoted text clipped - 8 lines] > PSA/DRE on or near my birthday. > OCT 17, 1999 -- I ate popcorn and ended up in the ER due to Diverticulitis I never heard this story Steve. What a mess! I'm wondering if you really followed the plan according to the book? Many don't, and overdo the bacon & eggs stuff instead of eating high fiber carbs like veggies along with the rest. Where did you get the popcorn from? Those are empty carbs and never a part of the plan. I'm now on 8 years lowcarbing it. Still lazy and fat, but enjoying eating as much as ever.
 Signature JK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com
Steve Kramer - 04 Jul 2007 11:34 GMT > I never heard this story Steve. What a mess! I'm wondering if you > really followed the plan according to the book? Many don't, and overdo the > bacon & eggs stuff instead of eating high fiber carbs like veggies along > with the rest. Where did you get the popcorn from? Those are empty carbs > and never a part of the plan. I'm now on 8 years lowcarbing it. Still > lazy and fat, but enjoying eating as much as ever. Rest assure, Glass, it was 100% my fault. I went on a family outing in September where I ate nothing that wasn't off the grill, except for the eggs, bacon and sausages in the mornings.
Atkins actually worked very well for me until that three-day lapse. I mention it has having killed me half in jest.
glassman - 07 Jul 2007 01:31 GMT >> I never heard this story Steve. What a mess! I'm wondering if you >> really followed the plan according to the book? Many don't, and overdo [quoted text clipped - 9 lines] > Atkins actually worked very well for me until that three-day lapse. I > mention it has having killed me half in jest. Thank goodness for that. Us Atkins defenders have been having a rough time since he died.
 Signature JK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com
A. Black - 08 May 2007 12:40 GMT > Okay gang, I need some opinions. First a refresher: > [quoted text clipped - 9 lines] > that it is confined. Now I'm at the agonizing point of deciding > treatment. ...
> I am leaning towards robotic surgery for the reasons that at my age, > I'm concerned about what collateral damage I'd incur from radiation, [quoted text clipped - 3 lines] > in a good position for surgery. I've opted not to explore cryosurgery > or seeding. I will address the surgery part only as you indicate you are leaning that way.
1. Assuming you have decided on surgery you need to decide among RP, LRP and RLRP. Open surgery has advantages for cancer control:
- for higher Gleason score. A GS of 3+4 is borderline. - the higher chance of apical involvement. (This seems likely but unconfirmed in your case.) - the smaller the prostate.
2. Also you need to think about the lymph node dissection method and that may be as important as the surgical method.
3. hernia is a common side effect of prostatectomy 1 or 2 years later that is rarely discussed although you can reduce the chance if your surgeon repairs any subclinical hernia at the same time.
There are posts on my site (link is in signature) of all three of these. Under Labels on the right hand side click on surgery to get a list of surgery posts and these include a 4 part post entitled RP vs LRP vs RLRP, a post on Lymph Node Dissection methods and a post on Inguinal Hernia. I would at least discuss these issues the doctor. Under Key Posts in the right column click on Prostate Cancer Calculators to get a list of various online calculators into which you can plug your lab results and get prognoses. Also under Key posts on the right click on Case Histories for links to hundreds of histories on Yananow and some other longer histories from other sources.
Hope that helps.
--- The Palpable Prostate http://palpable-prostate.blogspot.com
prostatecncr@yahoo.com - 08 May 2007 13:07 GMT > I will address the surgery part only as you indicate > you are leaning that way. [quoted text clipped - 31 lines] > links to hundreds of histories on Yananow and some > other longer histories from other sources. You forgot one important thing for this young man. His penis will be shorter after surgery. Yes the bladder neck will come down a little and the penile urethra will meet up when the surgeon join the two ends together, but the lost of an inch or two where the prostate and prostatic urethral used to be got to be made up somehow, Most surgeon will not even mention this SE.
ron - 08 May 2007 14:15 GMT > You forgot one important thing for this young man. His penis > will be shorter after surgery. Yes the bladder neck will come down [quoted text clipped - 4 lines] > > - Show quoted text - I'm not sure I agree with your mechanism, or that 1-2 inches is the norm; but the bottom line is that it does occur. BTW, it occurs with RT too, at least when ADT is administered before hand to shrink the prostate see
J Urol. 2007 Jan;177(1):128-30; Penile length changes in men treated with androgen suppression plus radiation therapy for local or locally advanced prostate cancer; Haliloglu A, Baltaci S, Yaman O.
"Penile shortening was statistically significant at a mean followup of 18 months (mean 14.2 to 8.6 cm, p <0.001). "
...best wishes and good health, ron
cmdrdata - 08 May 2007 17:54 GMT > "Penile shortening was statistically significant at a mean followup of > 18 months (mean 14.2 to 8.6 cm, p <0.001). " 14.2 cm = 14.2 cm x 1 inch / 2.54 cm = 5.59 inch 8.6 cm = 8.8 cm x 1 inch / 2.54 cm = 3.38 inch
What do these numbers mean?
ron - 08 May 2007 23:54 GMT > > "Penile shortening was statistically significant at a mean followup of > > 18 months (mean 14.2 to 8.6 cm, p <0.001). " [quoted text clipped - 3 lines] > > What do these numbers mean? the mean (flaccid, stretched) shifted from 5.59" before, to 3.38" after...ron
kh - 17 May 2007 12:29 GMT > > > "Penile shortening was statistically significant at a mean followup of > > > 18 months (mean 14.2 to 8.6 cm, p <0.001). " [quoted text clipped - 6 lines] > the mean (flaccid, stretched) shifted from 5.59" before, to 3.38" > after...ron 5.59" before to 3.38" after????
Yikes!!! Mr. Pokie is barely 5" when fully alert and awake.
A few gals have mentioned that they prefer a bigger, longer, stretchier, more probing experience. One discovered that if she gave him a few kisses, he reciprocated in a pleasing manner. Decades later I still remember her words in the back seat of the old rusty car, "I'll get him nice and big. Yummy. Mmmm-mmmm. There. Let's go."
If the doc took 2" from Mr. Pokie, we'd be talking eraser nub, thimble, the small Tootsie roll, maybe 3" left????
A scary thought - Way back in the last century, when I was in college, I dated a gal, pretty, smart, classy, slim, older woman, about 30. She had one biological anomaly, her girl-button was, well, about the size of the tip of my little finger. That's down to the 1st joint.
I can't imagine sitting face to face with her, joined together below, a 3" Mr. Pokie with her 1" shiny pink worm on top of him.
Brrrrr. 5" to 1" was OK but 3" to 1" is too much equality. Hey, who's poking who here?
For the future, hopefully even on Lupron and Casodex, with a little, proper encouragement and some Vitamin-V, Mr. Pokie will have an occasional adventure.
-kh Wonder where she is now. 70? Retirement home, maybe?
Paul - 08 May 2007 16:14 GMT >> I will address the surgery part only as you indicate >> you are leaning that way. [quoted text clipped - 38 lines] >the prostate and prostatic urethral used to be got to be made up >somehow, Most surgeon will not even mention this SE. Thank you and I am aware of this based on comments in this newsgroup, which is what makes this forum so valuable.
I.P. Freely - 08 May 2007 18:29 GMT > You forgot one important thing for this young man. His penis > will be shorter after surgery. Yes the bladder neck will come down > a little and the penile urethra will meet up when the surgeon > join the two ends together, but the lost of an inch or two where > the prostate and prostatic urethral used to be got to be made up > somehow, Most surgeon will not even mention this SE. I've never noticed that except when it emerges from its constrictive pad in my boxer briefs. After a minute of freedom, or a shower, it looks pretty normal to me.
orchids58 - 16 May 2007 20:07 GMT On May 8, 7:07 am, prostatec...@yahoo.com wrote:
> > I will address the surgery part only as you indicate > > you are leaning that way. [quoted text clipped - 38 lines] > the prostate and prostatic urethral used to be got to be made up > somehow, Most surgeon will not even mention this SE. ***********************
" the lost of an inch or two where the prostate and prostatic urethral used to be got to be made up
> somehow, Most surgeon will not even mention this SE." So guys, you think the surgeon doesn't know about this?
I think that a lot of side effects are left out, but this was a big surprise to Ike, don't worry it works even if it is shorter. It was just a shock, advance warning would be nice, but I had to ask, if it had happened to anyone else. The group let me know it had. Ike is on his 15th RT today. He is tired, but stays upbeat about it. Good luck, Charlotte, wife
Burney Huff - 16 May 2007 22:58 GMT Hi Charlotte!
I'm glad to hear Ike is doing OK. If his experience is going to be similar to mine, and he's about half way through, he's probably going to feel a LOT more tired over the coming weeks. I hope he's happy that he has you there to support him so well. If he doesn't show his appreciation now, he probably will later. At least that's the way it worked for me.
I may be a bit more charitable toward docs than some; but, I believe they don't fully disclose the side effects because they are concentrating on treating the disease in the best way they know how. I imagine there are more than a few men who would hit the door in a heartbeat if the doc told them their #1 tool was going to be shorter, as well as maybe not working well, as well as the potential incontinence problems, etc. You might get different opinions from others in this group; but, I'll respect their opinions, too. And, I'm thinking the level of disclosure varies a lot from one doc to the next. And, when we are sitting there talking with the surgeon, our brains tend to glaze over and we don't hear a lot of things. I'm NOT saying this happened in Ike's case; but, I imagine quite a few people in this group will admit that their brains sort of froze up and they didn't reall hear much of what the doc was saying, anyway. I think it's called shock.
Keep hanging in there for Ike. I'm sure he does appreciate it, although he might be like I was and not be able, or aware, that he needs to do a better job of showing it. Feed him steak, liver, raisin bran, whatever it takes to make sure his red blood cell count doesn't drop too low. Stay away from iron supplements if possible. The constipation they can cause can be sort of troublesome when the bottom of the colon and the opening down there have been "nuked" like they are - and will continue to be. It's much better to keep "things" free-flowing than to have to try to force things along under those circumstances!
Take care, Charlotte.
Burney
>On May 8, 7:07 am, prostatec...@yahoo.com wrote: >> [quoted text clipped - 59 lines] >Good luck, >Charlotte, wife Steve Jordan - 17 May 2007 01:07 GMT On May 16, Burney replied to Charlotte, in pertinent part:
(snip)
> I may be a bit more charitable toward docs than some; but, I believe > they don't fully disclose the side effects because they are > concentrating on treating the disease in the best way they know how. We are *not* just prostates, breasts, other anatomical parts. We are *human beings*
We hurt. We fear. We weep. We ask for help from medics who won't give us more than about 15 minutes per visit.
Medics should treat not only the affected part, but the whole person. They often don't.
> I imagine there are more than a few men who would hit the door in a > heartbeat if the doc told them their #1 tool was going to be shorter, > as well as maybe not working well, as well as the potential > incontinence problems, etc. I cannot bring myself to believe that Burney actually believes that medics should not brief their patients re: the SEs of tx, but simply condemn patients to try to cope as best they can when the SEs manifest.
Burney is a brother in adversity. Surely he does not mean *that*
If the patient cannot bear the thought of these SEs of tx, he has yet to grow up; his brain still resides in his glans, as it did when he was 17. He will come around. Or die.
> You might get different opinions from others in this group; but, I'll > respect their opinions, too. I hope I'm first in line :-)
> And, I'm thinking the level of disclosure varies a lot from one doc > to the next. Indeed it does. There are honest medics and there are the others.
> And, when we are sitting there talking with the surgeon, our brains > tend to glaze over and we don't hear a lot of things. Maybe I'm dreaming, but it seems to me that it is the medic's professional *duty* to make sure that the patient understands.
Regards,
Steve J
"'MD' does not mean 'Medical Deity.'" -- Stephen B. Strum, MD
Burney Huff - 17 May 2007 16:40 GMT Steve, I totally agree with you that all docs should fully disclose all side effects. But, we know they don't. I believe sometimes the docs are not fully aware of the SEs. (Although they should have full knowledge of the shortening effect.) I think they often just see their job as getting rid of the cancer and don't worry as much as they should about what comes next. And, I agree that we all should be able to handle the knowledge of the side effects and make rational decisions based on full knowledge. But, most of us realize, after the fact, that we did not have full knowledge, or we didn't have a full understanding of what we "knew". I think I was too much in shock to really comprehend some of what was said.
I was meaning to say that I believe most docs do the best job they can. Some are simply much more capable or willing to give their patients and their families full information. There are many reasons for this. Some of it certainly is dependent on the personality of the doc! Some of it depends on what they know. (A doc that graduates from med school with a C average is still called "Doc".) That's why I believe it is of utmost importance to find a doc with whom you feel comfortable in in whom you feel confidence. I place a lot less importance on the hospital where the work is done. An artist can do excellent work in a "dump". A klutz will do bad work in a palace with all the bells and whistles.
Anyway, Steve, I think we are in agreement. I didn't mean to imply differently. I could have worded my thoughts better. I'll keep that in mind next time.
My best to you and our partners in this club - as well as all their partners. They are patients, too.
Burney
>On May 16, Burney replied to Charlotte, in pertinent part: > [quoted text clipped - 50 lines] >"'MD' does not mean 'Medical Deity.'" >-- Stephen B. Strum, MD orchids58 - 19 May 2007 18:32 GMT > Hi Charlotte! > [quoted text clipped - 99 lines] > >Good luck, > >Charlotte, wife Hi Burney,
Ike got bloodwork done at his regular Dr. and this is what it showed. WBC 6.7 K/UL 4.1---10.9 RBC 5.6 M/UL 4.7--6.0 HGB 18.2 G/DL CRITCAL HIGH 13.5--18.0 HCT 53.9 % HIGH 42.0--52.0 MCH 32.4 PG HIGH 26.KK0--32.0 PLT 154.0 KK/UL 37.0--92.0 CO2 MMOL/L HIGH 23.0--29.0 TRIG 182 MG/DL HIGH 35--160
URINALYSIS BLOOD TRACE NEGATIVE
WHAT DO YOU THINK GUYS, They don't draw blood where he gets RT. They do weigh him once a week. 167 lbs , now. in birthday suit with gown on.
Do we need to get an oncologist, besides RT oncologist?
Paul - 08 May 2007 16:14 GMT >> Okay gang, I need some opinions. First a refresher: >> [quoted text clipped - 30 lines] > likely but unconfirmed in your case.) >- the smaller the prostate. I have been told that my prostate is small, as the doctor commented on this when performing the TRUS Biopsy.
>2. Also you need to think about the lymph node >dissection method and that may be as important >as the surgical method.
>3. hernia is a common side effect of prostatectomy >1 or 2 years later that is rarely discussed although [quoted text clipped - 17 lines] > >Hope that helps. I've been to your excellent site before and will revisit. Thanks very much.
>--- >The Palpable Prostate >http://palpable-prostate.blogspot.com Lud - 08 May 2007 15:56 GMT > Okay gang, I need some opinions. First a refresher: > > 45 yrs old > PSA 4.7 2/06 ............
Hi Paul
What an awful diagnoses at such an early age - this cancer is a real bummer. I was diagnosed with a PSA of 34 eight years ago at age 59, yet of 8 cores I had much smaller percentage and fewer cores than yours, so I would be concerned as to the total extent of the spread. Because of my high PSA and good chance of cancer spread, I chose IMRT radiation - it was a major mistake. Three years after radiation, the major cancer nodes were gone but there was residual cancer at the apex, base and seminal vesicles - this confirmed but a Prostascint-CT fused scan by Dr Sodee in Cleveland. Dr Sodee has over 10 years experience with this scan and is the best person do it. From his experience, he has found that often even with low PSA levels and clear margins, patients have had small remote mets. Selecting a treatment is a difficult decision to make. Dr Horst Zinke study at Mayo may help. His study found that the patients who had surgery even with extensive mets had better long term outcomes. I saw this study years after I had my radiation. The advantage of surgery is that post surgery pathology report will give an accurate definition of the type and extent of cancer cells within the prostate area. Follow-up radiation is then possible, best planned on the findings of a Prostascint-CT fused scan. Some patients with aggressive cancer have even done early chemo. Then for the last decision, you must find the best artist of that treatment. For robotic surgery, look up Dr Tewari as he is highly regarded. Forget about doctors bedside manners and look closely at the doctors track record with other patients and how many procedures he has done in total and how many is he doing recently - 'practice makes perfect'.
You are fortunate to have discovered it early - chose a treatment and practitioner wisely and hopefully you will not have to worry about it again.
Lud
Paul - 08 May 2007 16:14 GMT >> Okay gang, I need some opinions. First a refresher: >> [quoted text clipped - 36 lines] > >Lud Lud,
Sorry to hear about your battle with this monster, and yes I am very concerned about the spread. In retrospect, I suppose my cancer was growing even though my PSA scores and DRE were turning up nothing concrete until I clocked in at 4.7. Tewari is who I'm consulting regarding RLRP and the direction I am leaning towards for reasons you have communicated Thanks for your comments.
Lud - 08 May 2007 16:24 GMT Paul
For peace of mind, you could go for a Prostascint-CT scan by Dr Sodee. After 4 Prostascint scans by 3 doctors, Dr Sodee is the only one that I would recommend. He was faulted for finding too many false positives in the surgery patients he had scanned. What he later found out was that 80% of these so-called false positives where real and these patients had PCa recurrence. With this scan, your surgeon would be aware to search for cancer in the indicated areas. Best wishes for success.
Lud
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