Medical Forum / Diseases and Disorders / Prostate Cancer / January 2006
Radiation Treatment
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Jamie - 29 Dec 2005 17:14 GMT I was recently diagnosed with Prostrate cancer (hell of a Christmas present)! My PSA was 8.3, I am 50 years old and they believe that the cancer was caught early. I have been given multiple treatment options. I am leaning towards the beam radiation (Ithink that is what it is called). Primarily because I do not want to undertake the risk of surgery and even with the seeds I would have general anesthesia. ALso because I have been told that the beam radiation is the only form of treatment that also treats the lymphnodes. The risk of incontinence associated with surgery also scares the hell out of me.
Are there other risk that I should be considering? I am assuming that this form of treatment is not as popular as the seeds simply because it involves 8 1/2 weeks of treatment. But I would be most grateful if someone could tell me of other concerns with the beam treatmen tthat I should be considering.
Thank you for your time !
Jamie
John Loomis - 29 Dec 2005 17:20 GMT Hello Jamie, I am sorry for your diagnosis, and yet it is good to know about this early on, than find out later when cancer has spread. I was 49 when dx'd in a small town. The Dr. did the biopsy, DRE, etc. He wanted me to have External Beam Radiation. I was all set to go, got a hormone shot, (Lupron) all while I was studying this disease, and asking questions. I decided to go to a "Prostate Cancer Specialist" in the "Big City" I went to 2 with all my lab work and bone scan, and questions. I was happy I did, and finally ended up with a specialist Dr. James D. Brooks, Stanford Medical University. I am 6 years past now. I had RP in Nov. 1999. I did not have trouble with wetting myself, and erectile function took about 2 years to recover "fully" I would set up an appointment with a prostate cancer specialist near you. I would see one or more. Also make sure to line up all your lab work so these Dr.s can review them. Do not be afraid of intimidating the Dr. who did the original dx. Some Urologist do many aspects of Urology. Some are specific in dealing with Prostate Cancer. Any questions, please ask, and do know you are on the right track! John Loomis
I sent this letter to an earlier message /reply I would get more opinions..Do not be afraid of surgery at age 50. Best suited for younger men..... Good wishes.
>I was recently diagnosed with Prostrate cancer (hell of a Christmas > present)! My PSA was 8.3, I am 50 years old and they believe that the [quoted text clipped - 15 lines] > > Jamie jhhtexas@ieee.org - 29 Dec 2005 17:52 GMT You need to do a lot of research and go to a Pca "Center of Excellence" where you can talk to both radiation oncologists and urologists about the various treatment options. I opted for an RRP at Clarke Urology Center at UCLA and have fully recovered my sex life after 1 1/2 years. As I understand it, radiation will degrade your erectile function such that after 2 years you may be worse off sexually than you would with an RRP. Another advantage of an RRP is a complete pathology report on your prostate and surrounding lymph nodes so you know better where you stand.
Steve Jordan - 29 Dec 2005 17:56 GMT > I was recently diagnosed with Prostrate cancer (hell of a Christmas > present)! My PSA was 8.3, I am 50 years old and they believe that the [quoted text clipped - 6 lines] > associated with surgery also scares the hell out of me. > Jamie has a lot of work to do to prepare to make a decision.
A great deal of important information was omitted from the above paragraph: general health, whether a biopsy has been performed and its result in terms of Gleason score (expressed as, for example, x+y=z), clinical stage (expressed as, for example, T2b or some such). Any other staging tests?
Has Jamie consulted an oncologist?
An excellent place to begin the educational effort that is required so that an informed decision can be made is the website of the Prostate Cancer Research Institute at: http://prostate-cancer.org/index.html
> Are there other risk that I should be considering? I am assuming that > this form of treatment is not as popular as the seeds simply because it > involves 8 1/2 weeks of treatment. But I would be most grateful if > someone could tell me of other concerns with the beam treatmen tthat I > should be considering. > It appears that Jamie is referring to external beam radiation treatment (EBRT), a generic term for any radiation treatment (tx) that is applied from outside the body. There are several types: 3DCRT (three-dimensional conformal radiation therapy, which is outdated but still sometimes used), intensity-modulated radiation therapy (IMRT), the latest mode, much more accurate than 3DCRT, and others such as proton beam.
I assume that the proposed tx is IMRT. This can be accompanied by adjuvant androgen deprivation therapy (ADT), depending upon the risk assessment of Jamie's case.
All txs have side effects (SEs), which may be treatable if necessary. The usual SEs of IMRT are proctitis and temporary urinary and bowel urgency. Erectile difficulties may develop -- or may not. There is no certainty, however, that Jamie will experience any SE -- though he probably will. The unanswerable question is what SEs and to what extent. Each of us is different and will react to tx in his own unique manner.
If Jamie will go to the above website, which is objective and authoritative, he will find answers to his questions by use of the search function.
Another excellent source of information is the book, _A Primer on Prostate Cancer_ subtitled "The Empowered Patient's Guide" by PCa (prostate cancer) specialist and oncologist Stephen B. Strum, MD and Donna Pogliano, PCa warrior. It can be ordered via the PCRI site or any bookstore. It could be a life-saving investment.
Welcome to the club no one wants to join. Please keep us informed.
Regards,
Steve J
"We must tailor the treatment to the nature of the disease. We must listen to the biology." -- Stephen B. Strum, MD
JK@work - 29 Dec 2005 18:05 GMT > I was recently diagnosed with Prostrate cancer (hell of a Christmas > present)! My PSA was 8.3, I am 50 years old and they believe that the [quoted text clipped - 15 lines] > > Jamie Do alot more reading and research before you jump to any conclusions. So let me get this straight Jaime.... anethesia scares the hell out of you, but getting your family jewels fried and radiated is OK? There's a reason that EB is not high up on the list of primary choices for folks in your position. Let's start with very possible painful and severe side effects for months after treatment, and that once done you can't go back and have the surgery if the job isn't done. Keep in mind that the goal of any of the treatments is to completely get rid of your entire prostate. That means that WHATEVER you do, short of nothing, you won't ever be able to produce semen again. May be incontinent for awhile, and probably have some degree of erectile dysfunction. That said, why not choose an option that will give you the best chance of being cancer free for the rest of your life? You sound like a perfect candidate for RP surgery to me, but it's your choice. I had it 3 years ago, and am thrilled with the decision. My surgeon visually saw the whole picture with his expert eyes, and as soon as I woke up and he gave me the thumbs up, I knew the worst was over. Good luck!
 Signature "Don't be offended I'm just SNARKY" JK Sinrod Sinrod Stained Glass Studios http://www.sinrodstudios.com/ Coney Island Memories www.sinrodstudios.com/coneymemories/
Alan Meyer - 29 Dec 2005 19:57 GMT > > I was recently diagnosed with Prostrate cancer (hell of a Christmas > > present)! My PSA was 8.3, I am 50 years old and they believe that the > > cancer was caught early. I have been given multiple treatment options. > > I am leaning towards the beam radiation (Ithink that is what it is > > called). Primarily because I do not want to undertake the risk of > > surgery and even with the seeds I would have general anesthesia. I agree with JK that the risks of general anesthesia aren't too high. S**t happens but it's fairly rare.
> > ALso > > because I have been told that the beam radiation is the only form of > > treatment that also treats the lymphnodes. If your cancer has spread outside the prostate, but not far outside, I believe that radiation is more likely to be helpful. But it may not have spread. Whether it has or not, and whether radiation is advisable if spread is likely, are important questions to ask your doctors.
There is apparently also a risk of incontinence with radiation but it is very slight. Although I've seen references to it in the literature I can't recall any radiation patient on this newsgroup mentioning it. Difficulty urinating is much, much more common though, for most (but not all) of us, the problem went away within 3-6 months after the end of radiation.
Rates of impotence are said to be comparable between surgery and radiation.
> > Are there other risk that I should be considering? I am assuming that > > this form of treatment is not as popular as the seeds simply because it > > involves 8 1/2 weeks of treatment. But I would be most grateful if > > someone could tell me of other concerns with the beam treatmen tthat I > > should be considering. I personally thought the risks of surgery were higher than radiation and chose radiation in part for that reason. A friend of mine almost died after scar tissue created during his surgery migrated into his lungs. The idea of a guy wielding a knife in my innards scared me more than the idea of xrays zapping them.
Long term risks of radiation however are not zero. There are risks of long term bladder or bowel irritation, long term impotence and, according to some researchers, a small but non-zero increased risk of secondary cancers in bladder, bowel, or rectum.
Unfortunately, all of the treatments are potentially dangerous. All of them do considerable violence to the body. It's important to find a very good, very experienced doctor to apply whichever treatment you choose.
> Do alot more reading and research before you jump to any conclusions. So > let me get this straight Jaime.... anethesia scares the hell out of you, but > getting your family jewels fried and radiated is OK? If by "family jewels" you mean the testicles, they probably don't get much radiation. When I had external beam radiation the beam was aimed perpendicularly to my body, with the radiation emitter moving around in a circle. I don't _think_ much radiation went outside the treatment band (but hey, what do I know?) The testicles seemed to be just outside that band.
> There's a reason that > EB is not high up on the list of primary choices for folks in your position. [quoted text clipped - 10 lines] > whole picture with his expert eyes, and as soon as I woke up and he gave me > the thumbs up, I knew the worst was over. Good luck! Jamie,
As you can see from this and other posts, there are a lot of very strong opinions about the value of surgery vs. radiation. I think there is some emotion centered around this issue since a man feels that he is betting his life on his choice, and all of us have a deep need to believe that we have made the right choice. It's very hard for most of us to hear someone say that the other treatment option may be a better choice than the one we chose.
My first thought after learning I had cancer and I had to choose a treatment was that I would do research and choose the best treatment - the one that science pointed to as best. But it turned out not to be as simple as that.
I came to the conclusion after my research that radiation and surgery have similar outcomes when done well - with significant but very different advantages for each one. Choosing the particular set of advantages that appeal to you seems to me as much a personal as a scientific choice.
Study what you can, ask all the questions you can, talk to both a radiation oncologist and a surgeon - the best ones you can find. Move quickly, but deliberately. Don't waste time, but don't jump to conclusions either.
Best of luck.
Alan
Ed Friedman - 29 Dec 2005 18:51 GMT > I was recently diagnosed with Prostrate cancer (hell of a Christmas > present)! My PSA was 8.3, I am 50 years old and they believe that the [quoted text clipped - 15 lines] > > Jamie Jamie,
If you are looking for an alternative to surgery, you should consider systemic treatment as detailed in: http://www.prostateweb.com/pdfs/ASCO_PCF_02_2005.pdf
The downside of the treatment is that there is no chance of a "cure". The upside of the treatment is that side effects are temporary and at this point (patients having been treated for 5-14 years) the chance of dying from prostate cancer are 0% (they list it as 0.6%, but the one patient who died actually had ductile adenocarcinoma and not primary adenocarcinoma of the prostate).
If you want to better understand the theory behind all of this, you might want to read my article at: http://www.tbiomed.com/content/2/1/10
Ed Friedman
ron - 29 Dec 2005 21:04 GMT Jamie...Here is a table from a study that compared the long-term QOL effects between men selecting brachytherapy, external beam radiotherapy and surgery as their primary treatment, along with age-matched controls who do not have PCa. This table compares the men at a median follow-up of 6.2 years post-treatment. The study was highly powered as it involved 1,014 men (including controls) and was multi-institutional (J Clin Oncol. 2005 Apr 20;23(12):2772-80; Long-Term Outcomes Among Localized Prostate Cancer Survivors: Health-Related Quality-of-Life Changes After Radical Prostatectomy, External Radiation, and Brachytherapy; Miller DC, Sanda MG, Dunn RL, Montie JE, Pimentel H, Sandler HM, McLaughlin WP, Wei JT.).
Age-adjusted, Long-term (median 6.3 years) EPIC Domain Summary Scores HRQOL Domain BT 3-D CRT RP Age-matched Control Men Urinary Irritative 81* 84 91 89 Urinary Incontinence 78* 86 80* 92 Sexual 28* 35* 39* 63 Bowel 86* 84* 94 96 Hormonal 87* 89 91 93 Denotes significant change in HRQOL domain score from 2 to 6 years of median f/u (p=0.05) * Denotes significant difference in HRQOL domain score at 6 yrs of median f/u vs. controls (p=0.05)
As others have pointed out, where an individual man will fall, in terms of side effects, is impossible to predict, but this statistical sampling will give you some idea of how things turn out on average.
As to other risks, younger men, such as yourself, are often discouraged from XBRT for the following reasons: 1) Secondary cancers resulting from the radiation are a known side effect. These secondary cancers are expected to reach maximum incidence 10-20 years post-treatment. Hence, younger men, who will live longer, will have a greater probability of developing such cancers. One good study (Cancer Volume 88, Issue 2 , Pages 398 - 406; Published Online: 20 Nov 2000; Second malignancies in prostate carcinoma patients after radiotherapy compared with surgery; David J. Brenner, D.Sc. 1 *, Rochelle E. Curtis, M.A. 2, Eric J. Hall, D.Sc. 1, Elaine Ron, Ph.D. 2) put the rate at 10 years post-treatment at 1 in 70, again the number would be expected to trend upwards over the next decade. Another study (Gastroenterology; 2005 Apr;128(4):819-24; Increased risk of rectal cancer after prostate radiation: A population-based study; Baxter NN, Tepper JE, Durham SB, Rothenberger DA, Virnig BA.) put the odds ratio for rectal cancer at 1.7 when an RT group is compared to an RP group. Some on this NG argue that newer, more focused forms of RT, such as IMRT, are less likely to give rise to secondary cancers. The literature argues otherwise (Int J Radiat Oncol Biol Phys. 2003 May 1;56(1):83-8; Radiation-induced second cancers: the impact of 3D-CRT and IMRT; Hall EJ, Wuu CS), expecting IMRT to roughly double the rate of secondary cancers. 2) In addition to secondary cancers in other body parts, the cancer can reoccur in the prostate. Generally speaking RT leaves more prostatic tissue behind than surgery. This is why men treated by XBRT usually still have ejaculate. Neglecting the possibility that cancerous cells remain in this tissue, whatever genetic / environmental effects produced prostate cancer in the first place, still have prostatic tissue available in which to induce further mutations that could lead to the redevelopment of new prostate cancer 10-20 plus years down the road. Again, something of more concern to younger men with more years in front of them.
While the incidence of secondary cancers is relatively small (in an absolute sense; they can be large when compared in a relative sense, note the odds ratio in the rectal cancer reference) it is another factor to be considered in making a treatment decision. Hope this information helps...Best wishes and good health, Ron
I.P. Freely - 29 Dec 2005 21:54 GMT I always have a helluva time trying to plow though these erudite statistical analyses (despite doing very well in several graduate courses in Bayesian statistics), and this one's no exception. Makes me wonder how much the average non-technical bear gets out of them. Maybe that explains why I don't understand why this seems to imply that RT, beam or seeds, produces more bowel SEs than RP does. I've always read the opposite, I thought, and my rad onc advised me to have surgery rather than RT the minute I told her I'd rather risk urinary incontinence than bowel incontinence.
Who the hell wouldn't?
Back to the topical question: Jamie., you need to do a GREAT deal more reading before making this decision, maybe the biggest of your life. Study several PC books, several of the websites recommended here, and the last year's archives of this forum, then YOU tell US whether RP or RT or BT is YOUR best choice, and tell us why. Only then will you be qualified to make this decision, IMO. If you're not motivated to put that much work into it. your next best choice is to consult for four oncologists at great length: a surgical onc, a rad onc, a med onc, and then a fourth onc -- all prostate experts -- for a reality check on the decision you reach after those first three consultations. Now if THAT's too much work, put your decision in the hands of whomever you like but realize that you will second-guess your choice for the rest of your life unless you get REAL lucky and totally forget you ever had cancer.
I.P.
Jamie...Here is a table from a study that compared the long-term QOL effects between men selecting brachytherapy, external beam radiotherapy and surgery as their primary treatment, along with age-matched controls who do not have PCa. This table compares the men at a median follow-up of 6.2 years post-treatment. The study was highly powered as it involved 1,014 men (including controls) and was multi-institutional (J Clin Oncol. 2005 Apr 20;23(12):2772-80; Long-Term Outcomes Among Localized Prostate Cancer Survivors: Health-Related Quality-of-Life Changes After Radical Prostatectomy, External Radiation, and Brachytherapy; Miller DC, Sanda MG, Dunn RL, Montie JE, Pimentel H, Sandler HM, McLaughlin WP, Wei JT.).
Age-adjusted, Long-term (median 6.3 years) EPIC Domain Summary Scores HRQOL Domain BT 3-D CRT RP Age-matched Control Men Urinary Irritative 81?* 84 91 89 Urinary Incontinence 78?* 86? 80* 92 Sexual 28* 35?* 39* 63 Bowel 86?* 84?* 94 96? Hormonal 87* 89 91 93 ? Denotes significant change in HRQOL domain score from 2 to 6 years of median f/u (p=0.05) * Denotes significant difference in HRQOL domain score at 6 yrs of median f/u vs. controls (p=0.05)
As others have pointed out, where an individual man will fall, in terms of side effects, is impossible to predict, but this statistical sampling will give you some idea of how things turn out on average.
As to other risks, younger men, such as yourself, are often discouraged from XBRT for the following reasons: 1) Secondary cancers resulting from the radiation are a known side effect. These secondary cancers are expected to reach maximum incidence 10-20 years post-treatment. Hence, younger men, who will live longer, will have a greater probability of developing such cancers. One good study (Cancer Volume 88, Issue 2 , Pages 398 - 406; Published Online: 20 Nov 2000; Second malignancies in prostate carcinoma patients after radiotherapy compared with surgery; David J. Brenner, D.Sc. 1 *, Rochelle E. Curtis, M.A. 2, Eric J. Hall, D.Sc. 1, Elaine Ron, Ph.D. 2) put the rate at 10 years post-treatment at 1 in 70, again the number would be expected to trend upwards over the next decade. Another study (Gastroenterology; 2005 Apr;128(4):819-24; Increased risk of rectal cancer after prostate radiation: A population-based study; Baxter NN, Tepper JE, Durham SB, Rothenberger DA, Virnig BA.) put the odds ratio for rectal cancer at 1.7 when an RT group is compared to an RP group. Some on this NG argue that newer, more focused forms of RT, such as IMRT, are less likely to give rise to secondary cancers. The literature argues otherwise (Int J Radiat Oncol Biol Phys. 2003 May 1;56(1):83-8; Radiation-induced second cancers: the impact of 3D-CRT and IMRT; Hall EJ, Wuu CS), expecting IMRT to roughly double the rate of secondary cancers. 2) In addition to secondary cancers in other body parts, the cancer can reoccur in the prostate. Generally speaking RT leaves more prostatic tissue behind than surgery. This is why men treated by XBRT usually still have ejaculate. Neglecting the possibility that cancerous cells remain in this tissue, whatever genetic / environmental effects produced prostate cancer in the first place, still have prostatic tissue available in which to induce further mutations that could lead to the redevelopment of new prostate cancer 10-20 plus years down the road. Again, something of more concern to younger men with more years in front of them.
While the incidence of secondary cancers is relatively small (in an absolute sense; they can be large when compared in a relative sense, note the odds ratio in the rectal cancer reference) it is another factor to be considered in making a treatment decision. Hope this information helps...Best wishes and good health, Ron
ron - 29 Dec 2005 22:10 GMT I.P. Freely wrote...snip...
> Maybe that explains why I don't understand why this seems to imply that RT, beam or > seeds, produces more bowel SEs than RP does. The study does suggest that men choosing either RT treatment have more bowel SEs than men choosing RP (86%, 84% of the RT men didn't have bowel SEs vs. 94% of the RP men not having bowel SEs (higher numbers mean better outcomes, look at the controls)
> I've always read the opposite I don't follow that, did you say it "backwards"?
> I thought, and my rad onc advised me to have surgery rather than RT the minute I told > her I'd rather risk urinary incontinence than bowel incontinence. yep, now we're back on the same page again...Ron
I.P. Freely - 30 Dec 2005 00:53 GMT "ron" <wrote
> The study does suggest that men choosing either RT treatment have more > bowel SEs than men choosing RP (86%, 84% of the RT men didn't have > bowel SEs vs. 94% of the RP men not having bowel SEs (higher numbers > mean better outcomes, look at the controls) Oh ... DIDN'T have problems. I assumed those were the numbers of pts who DID have problems. TOLD ya these things confuse me.
Thanks.
I.P.
Alan Meyer - 29 Dec 2005 23:04 GMT Ron wrote (I've changed this to fixed font spacing): ... Age-adjusted, Long-term (median 6.3 years) EPIC Domain Scores HRQOL Domain BT 3-D CRT RP Age-matched
Urinary Irritative 81* 84 91 89 Urinary Incontinence 78* 86 80* 92 ...
Ron,
Am I reading this right?
Do men with RP have _less_ urinary irritation than men who have never had cancer treatment at all?
Do men with brachytherapy have _more_ urinary incontinence than men with RP?
Both of those seem surprising, especially the second. I can't, for example, remember any radiation patient on this newsgroup ever mentioning urinary incontinence.
Alan
ron - 29 Dec 2005 23:52 GMT > Ron wrote (I've changed this to fixed font spacing): > ... [quoted text clipped - 11 lines] > Do men with RP have _less_ urinary irritation than men who have > never had cancer treatment at all? Alan...The numbers are correct. I've gone back and inserted the 95% confidence intervals up above. So while the urinary irritative means are different numbers for the controls and the RP men, the difference is small and at the 95% confidence level it is possible that the difference is due to chance rather than real effects.
> Do men with brachytherapy have _more_ urinary incontinence than > men with RP? Same thing here, there is only a 2 point difference between the BT and RP means. At the 95% confidence level one cannot say that the means are significantly different.
> Both of those seem surprising, especially the second. I can't, > for example, remember any radiation patient on this newsgroup > ever mentioning urinary incontinence. Two more points Alan. First, this data reflects the situation at a median time of 6.2 years post-treatment. I suspect that the median time post-treatment for this NG is shorter than that. Whether or not that's significant I don't know, I'm just noting the difference. Second, the median ages of the men in the study were: controls=69.1; BT=70.4; CRT=75.7 and RP=67.2. On average, the RT men are older than the RP and control men. I suspect age doesn't help any of these QOL issues. Further (as Steve K. notes from time to time), the men in this NG are probably younger than those in the study. This may tend to lessen SEs.
I think the key points to the study are those numbers marked by an asterisk in my initial post. As noted in the footnotes to the table, these numbers differ significantly (at the 95% confidence level) from the controls. Hope this helps...Ron
> Alan ronju99 - 30 Dec 2005 00:12 GMT Jamie, I'm a lot more blunt than most on this forum but that doesn't mean I'm lacking in education. Just a different profession ,(law enforcement).Bluntness comes with the turf. I was 62 with Gleason 3+4=7 and PSA 6.7, T2b. Chose LRP 2 1/2 years ago and still undetectable. If I had to do it over again I would choose RLRP. It's seem to be quicker and easier on nerve sparing. I would not recommend LRP as it can take quite awhile to perform. Mine was 10 1/2 hrs. RLRP was not available when I chose. As for EBRT, my cousin was 50 with psa of 9.0 and he went to Methodist in Indianapolis and they gave him a choice; surgery or EBRT. He chose EBRT and died 12 years later two years ago at the age of 62. You can do all the research you want but in the end you will find there is no cure for prostate cancer. Prostate cancer is something you don't mess with. I hear it can be a very painfull death. First of all, taking into consideration your biopsy, psa, DRE,any scans and your age, one will try and determine the probability that the cancer is confined to your prostate. If there is a high probability that it is confined then removing the prostate with the cancer inside is your only choice. Any other choice is trying to kill the cells wihin the prostate. There is no long term evidence that radiation or freezing has been successful in doing this. Long term means over 15 years. Don't be fooled by short term or intermediate term studies. They try and project future success. Most men will live 10 to 15 years even if they choose to do nothing. In my view all past attempts at radiation have failed and there is no reason to believe they have found the magic bullet yet. There are a lot of MD's that claim to be specialist but few that deal with prostate cancer exclusively. You need to contact a prostate cancer specialist at one of the major cancer centers for advise as to what course of action is best suited for your perticular case.I believe you will find that if your cancer is confined to the prostate as best they can tell, your only realistic option is surgery reguardless of the side effects. Side effects should not be a determiner of your choice. Life expectancy should. Ron S.
Steve Kramer - 30 Dec 2005 01:29 GMT > I'm a lot more blunt than most on this forum but that doesn't mean I'm > lacking in education. Just a different profession ,(law > enforcement). Private eye? Sam's son? :-)
 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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 Non Illegitimi Carborundum
ron - 30 Dec 2005 02:32 GMT ronju99 wrote...snip
> I was 62 with Gleason 3+4=7 and PSA 6.7, T2b. Chose LRP 2 1/2 years ago > and still undetectable. If I had to do it over again I would choose RLRP. ...big snip...
> Side effects should not be a determiner of your choice. Life expectancy should. > Ron S. Hi Ron...Your comments caught my eye. There is no long-term (not even 5 year, much less 10 or 15) bNED or survival data for LRP or RLRP. Even Guillonneau, the pioneer of LRP, says biochemical recurrence probabilities and survival data are still too immature to draw conclusions about how LRP or RLRP compares to open RP in terms of these important factors. Your post seems to suggest that survival / biochemical recurrence is important to you. Why then did you choose LRP (or would choose RLRP today) when there is no data saying that biochemical recurrence and survival rates are equal to or better than open RP. Hope I'm not poking too hard, but I'm curious about the thinking behind this. I know many people "expect" LRP or RLRP to be at least as good as RP in terms of recurrence-free probabilities, but there simply is no longer-term data to allow comparison today. Reminds me of a car I once bought, it was supposed to be like the one I was driving at the time, only better; but then that's another story...Ron
ronju99 - 30 Dec 2005 12:55 GMT The goal is the same as RP; to remove the prostate while the cancer is still confined. Only the technique is different. I agree that RP is the best proven choice of the three. When I chose LRP it was with limited research and I bought into the hipe that it would be easier on me than RP. I was wrong and even today after doctors have had more experience at doing it, I still wouldn't recommend it. The learning curve is very difficult for surgeons and they often don't tell you the truth about there experience level. You will also be subjected to anesthesia for a much longer time than with RP or RLRP. My blood loss was 5 pts. Not much better than RP or maybe even worst. Obviously any new technique takes MD's time to perfect and when I chose LRP they hadn't acquired enough experince to do a satisfactory job. RLRP seems to be much easier to learn and the time required to perform the procedure seems to be acceptable. Also most patients won't be going to one of the major cancer centers and won't be recieving the same level of expertise but will expect the same results. That's why I mention having mine done at Indiana University Hospital, Indianapolis, In. The surgeon trained at Washington University at St. Louis but mislead me over the phone as to his experince level. So when people go to these major city hospitals and even some universities it doesn't mean they will be getting the advise and care that the major cancer centers would give them. I believe RP is still the first choice and RLRP would be a close second provided they both are performed by experienced prostate cancer surgeons. Both techniques remove the entire prostate without compromising the cancer cells if done properly. Ron S.
Alan Meyer - 30 Dec 2005 17:47 GMT ...
> As for EBRT, my cousin was 50 with psa of 9.0 and he went to Methodist in > Indianapolis and they gave him a choice; surgery or EBRT. He chose EBRT > and died 12 years later two years ago at the age of 62. ...
Unfortunately, there are many men who have been treated with surgery, radiation, or both, who have died of prostate cancer. It's a mistake to generalize from one case.
> ... If there is a high probability that it is > confined then removing the prostate with the cancer inside is your only > choice. Any other choice is trying to kill the cells wihin the prostate. > There is no long term evidence that radiation or freezing has been > successful in doing this. Long term means over 15 years. ...
The most common radiation techniques used today are only 15-20 year old, but high energy x-rays have been used on cancer at least since the 1950s. They are used on many, many types of cancer, including breast cancer, brain cancer, retinoblastoma, bone cancers, and many others. A lot of experience has been gained and there have been many long term cures.
Radiation really is a well accepted technique. There are pretty good studies of how and why it works, how much radiation is required, and so on.
I know a lot of people think surgery is the only option, and believe they are saving lives by telling people not to use radiation.
Maybe they're right but, if so, there are lot of highly educated doctors and scientists out there who are fooling themselves and everyone else.
Alan
Steve Kramer - 29 Dec 2005 21:34 GMT Welcome, Jamie, to the club for which no one ever applies.
I have not read all the replies yet that you have received, so I will only skim the surface of what you need to know. No one here could possibly advise you based solely on your age and PSA.
However, assuming you have a Gleason of say 6 or 7 and you have a Stage of say T1a, b or c, and no indication of extracapsule involvement, then you have to consider surgery. You don't have to decided on it (though every other 50-yr-old here with your numbers has). But, you do have to consider it.
You have to consider everything. You have to research. You have to ask questions (here is a good place for that). But, even if it is the first and only time in your life, you have to spend a lot of time with a few books, the Internet and more than one doctor. I'd suggest starting with Dr. Walsh's and Dr. Strumm's prostate cancer books.
 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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 Non Illegitimi Carborundum
>I was recently diagnosed with Prostrate cancer (hell of a Christmas > present)! My PSA was 8.3, I am 50 years old and they believe that the [quoted text clipped - 15 lines] > > Jamie kh - 30 Dec 2005 00:12 GMT > I was recently diagnosed with Prostrate cancer (hell of a Christmas > present)! My PSA was 8.3, I am 50 years old and they believe that the [quoted text clipped - 15 lines] > > Jamie Good evening Jamie,
I'm a little older than you and had slightly worse numbers. I was 57 when diagnosed. I chose the 3 phase approach, sometimes called the "Rudy Giulianni" treatment.
I had 2 four month Lupron shots, the first shot was a month before the start of IMRT at the Inova Cancer Center in Alexandria, VA.
The rad doc prescribed 25 sessions of IMRT, the advanced form of External Beam Radiation. This is a shorter protocol than the usual.
The rad doc and the rad nurse both said that side effects usually start about the 4th or 5th week and that I might escape that altogether.
I had 97 Palladium 103 seeds implanted a few weeks after the end of the IMRT. They gave me the option of having a local anesthetic for the seeding.
It is, after all, just the insertion of a dozen needles.
This is similar to the trans-rectal biopsy that you probably had.
I was looking forward to seeing and hearing the procedure but unfortunately, when the anesthesiologist touched my feet, I was able to tell him which foot he was tapping so he knocked me out.
I would not count on the External Beam Radiation treating anything that the doc doesn't plan to treat. This device is very focussed and precision aimed.
They should have explained that they will use a CAT scan to locate your prostate and will tattoo tiny alignment marks on you. Both the CAT scan machine and the IMRT robot are in rooms that are gridded with laser alignment beams.
The CAT scan and the IMRT robot are precision calibrated to the same co-ordinates such that when you receive the External Beam Radiation, the beams will intersect precisely to your prostate and tumor.
During the treatment you feel nothing. The Robot will move to the appropriate angle and you hear the motors that move and focus the beam. It takes about 10 minutes.
Side effects? Fatigue, urinary urgency and frequency after the 4th week. This should quickly resolve.
Possible bowel issues but I didn't have any. Donno what 8 1/2 weeks will bring.
Possible erectile issues but my theory is that this is related to the reduction of prostatic fluid. This happens as the prostate tissue is absorbed.
They should have discussed the staging and the Gleason with you. Your PSA is below 10, both my docs indicated that they use 10 as the cut-off. Below 10 is much better than above 10.
Good luck to you.
ronju99 - 30 Dec 2005 01:03 GMT You might also be aware that more often than not you will have more than one tumor and not all will be detected . The CT-scan is not that sensitive. The reaon many have recurrence after choosing radiation is because they don't see all the tumors. That's why they have started seeding all the prostate to try and catch the one's they have been missing. The learning curve for using radiation as a treatment option has not been very successful in the past but may someday prove itself. Ron S.
Alan Meyer - 30 Dec 2005 15:54 GMT I'll add a few comments on KH's report thorough report.
The 25 sessions of EBRT is shorter than the 40-42 usually prescribed for pure external beam treatment, but it's normal for men receiving implanted seeds. The major dose of radiation to the tumor itself is coming from the seeds with the external beam being used primarily to treat the area around the tumor and around the prostate. I think pretty much everyone getting both seeds and EBRT (some only get one or the other) is now getting 25 treatments.
Also, there is a lot of scanning done prior to administration of the EBRT. I don't think the main purpose of this is to locate the tumor so much as it is to precisely locate the prostate. Aiming a few millimeters off can be a significant mistake, so they try to get it as exact as they can. They then treat the _entire_ prostate, as well as the areas immediately around the prostate.
Just as a surgeon does not try to just excise the tumor and leave the rest of the prostate behind, so too I don't believe the radiation oncologist is trying to just radiate the tumor and leave the rest of the prostate untreated.
Both types of treatment, surgery and radiation, aim at the entire prostate and, in the case of radiation, often a little beyond.
Alan
Doug Taylor - 30 Dec 2005 21:47 GMT >I was recently diagnosed with Prostrate cancer (hell of a Christmas >present)! My PSA was 8.3, I am 50 years old and they believe that the [quoted text clipped - 13 lines] > >Thank you for your time ! Hi Jamie.
Get enough opinions yet?
You are about the same age as I when diagnosed, and we are "youngsters." Double edged sword: young enough to withstand the rigors of surgery, but halos having a long life expectancy to live a few decades with the inevitable side effects of the choice of treatment. Plus more time in which to develop recurrence at some later date.
The cop said he was blunt. I'm more blunt (a lawyer!).
All treatments for PCa suck, because:
a) none is perfect at "curing" PCa. There are a huge number of factors which determine what is the statically the best treatment for "cure" for each patient, such as age of patient, stage of cancer, gleason, psa, etc. etc. There is always some chance of recurrence, and if so, the treatments options will be different at that point. Only you and your doctors can decide what is best for YOU.
b) no matter which treatment, your quality of life - sexual for sure, and urinary continence, bowel function possibly - life will NEVER be the same as now. Don't listen to anybody who tells you differently - it is pure bullshit. You will lose the ability to ejaculate ranging from zero for RP to not much with radiation. Your erectile function will depend on how the nerves, if any, left over from treatment react to the hard-on drugs. If the nerves are not spared, you're f.cked because you won't be able to :-) Even if you can achieve erection, sex will be less pleasurable. Those who differ with this truth must confront this fact: If sex is supposedly BETTER after treatment (some yahoos insist on this) then why is it that in the history of the world nobody ever volunteered to get their prostate removed?
Here is a simple generalization that has some degree of truth:
Men who are concerned with mortality first and "want the cancer out" choose surgery. Quality of life is secondary.
Men who are concerned with quality of life first, choose external radiation or seeds. Mortality is secondary.
You can't get much more personal than that; it is gut instinct.
Here are some recommendations I believe all patients can agree on:
1) Don't panic and make a rash decision for treatment based upon fear.
2) Read and educate yourself until you puke. Walsh's book for sure; many other resources on the net and in the library.
3) Consult more that one physician, at least 2 but don't stop there!!!. You MUST talk to a surgeon with a long track record, and you MUST talk to a radiation oncologist. They will tout their own treatments, but you must hear them both out.
4) Check out the newer stuff: robotic, lathroscopic surgery. IMRT radiation (which I chose). Proton beam radiation. I heard a rumor that Bristol Myers is researching chemical prostate removal! Maybe you can volunteer :-)
5) After all that, make your OWN decision. Don't let the likes of me (a radiation guy) or all the RP guys peer group you. The relevant people are you, your wife, and your doctors.
6) Once you choose, NEVER second guess yourself. As long as you made this difficult choice based upon the best information available, then live with it. Coulda Shoulda Woulda? Fuggedaboudit!
Good luck and god bless.
I.P. Freely - 31 Dec 2005 03:17 GMT "Doug Taylor" wrote>
> Men who are concerned with quality of life first, choose external > radiation or seeds. And even that's debatable and highly personal, considering the bowel threat of radiation relative to that of surgery. There ain't no free lunch in this sport, so we must each choose our own poison.
I.P.
Glassman - 31 Dec 2005 06:25 GMT Let me add something to consider that I left out. I was a very very poor urinator before surgery. I would be at the urinal 4-6 times during a cold winter football game, and stand there for 10 minutes at a clip. I was up several times a night, every night. This may seem trivial to some, but I really had a miserable quality of sleep for years. Immediately following cath removal, and now 3 years later, I pee like a wild Rhino in the bush. I sleep through the night. To me this was a just another reason for surgery.
 Signature "Don't get me wrong... I'm SNARKY" JK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories
Brian - 31 Dec 2005 14:37 GMT > Even if you can achieve erection, sex will be less pleasurable. Those who > differ with this truth must confront this fact: If sex is supposedly > BETTER after treatment (some yahoos insist on this) then why is it that in > the history of the world nobody ever volunteered to get their prostate > removed? This part is defective reasoning.
There are reasons why hysterectomy is not popular even though menstrual periods are less popular: it is major surgery, and things can go worng. For this grand reason, I would not volunteer.
Also, as wonderful as sexual intercourse is, it is a lousy "reason to live", and few people would volunteer for prostatectomy even if it were guaranteed that orgasms would be twice as long and twice as intense.
Doug Taylor - 31 Dec 2005 17:03 GMT >> Even if you can achieve erection, sex will be less pleasurable. Those who >> differ with this truth must confront this fact: If sex is supposedly [quoted text clipped - 11 lines] >live", and few people would volunteer for prostatectomy even if it were >guaranteed that orgasms would be twice as long and twice as intense. Brian, please turn up your irony detector.
The point is and will continue to be that a PCa patient's sex life inevitably suffers and decreases after ANY treatment. It is a physiological fact of life and all patients must be aware of this going in. Pollyanna claims about "no" sexual side effects or that sex life is "better" after any treatment is just so much complete bullshit, AFAIC, and patients should reject them out of hand.
Therefore, indeed, a patient should NOT base a treatment choice upon projected future sexual function. If ALL treatments decrease function, then this factor zeros out.
After mortality and cure projections, quality of life issues after treatment should focus more upon urinary incontinence, bowel function, etc. than sex life.
As a multi sport athlete, my treatment choice of IMRT was greatly influenced by my refusal to accept ANY risk of urinary incontinence post treatment. Sorry, but there was no way I was going to face the next 20 or 30 years of my life with a potentially leaky bladder while cycling (road and off-road), skiing (downhill and x-c), and speed skating (ice and inline). Better dead than a couch potato :-)
I was also admittedly more or less mislead into wishful thinking that IMRT would result in little or no sexual side effects. Wrong. Erections not much without Vitamin V; ejaculation volume paltry and weak; libido pathetic. Of course, not walking around with a hard on all the time or bugging my poor wife for sex 4 times a week has certain advantages for 50 something aging baby boomers :-)
As I continue to recover from my radiation treatment three years ago, I will see how the bowel function is affected. But as of now, no incontinence, no urinary frequency or urgency, no bowel problems.
Brian - 31 Dec 2005 17:50 GMT >>There are reasons why hysterectomy is not popular even though menstrual >>periods are less popular: it is major surgery, and things can go worng. [quoted text clipped - 5 lines] > > Brian, please turn up your irony detector. I recognize a smiley when I see it, but not irony.
(I use an irony when the shirt is wrinkly)
> The point is and will continue to be that a PCa patient's sex life > inevitably suffers and decreases after ANY treatment. That's at least partly because we age...
...at least we hope to continue to age...
> It is a physiological fact of life and all patients must be aware of this going > in. Pollyanna claims about "no" sexual side effects or that sex life is > "better" after any treatment is just so much complete bullshit, AFAIC, and > patients should reject them out of hand. It appears from anecdotal testimonials in this group and other mailing lists I'm on that the post-treatment sexual function change is variable. Most experiences are of a decrease in sexual capacity and feedback, meaning enjoyment, but some are positive! Unless we assume them liars, the change due to treatment is both positive and negative (for surgery: heavy emphasis on negative, emphasis on heavy negative).
> Therefore, indeed, a patient should NOT base a treatment choice upon > projected future sexual function. If ALL treatments decrease function, > then this factor zeros out. Disagree unless worded: "if All treatments decrease function EQUALLY, then this factor zeros out". That assumed/asserted equality of degradation in quality is NOT asserted by many.
> After mortality and cure projections, quality of life issues after > treatment should focus more upon urinary incontinence, bowel function, > etc. than sex life. I agree emphatically! This because we engage in those functions more, and because dysfunctionality in those excretory processes affects a life more than (an increase in) loss of sexual function.
> As a multi sport athlete: Better dead than a couch potato :-) There are many things I'd rather, than diapers for the next 30 years. (and I'm a mouse potato)
> I was also admittedly more or less mislead into wishful thinking that > IMRT would result in little or no sexual side effects. Wrong. This varies person to person. Skill of the phaser-jock may come into play, the exact extent of the disease, and the ability of the body to recover from being stuck in a well-aimed microwave oven turned up high for a few minutes a day for 35 days out of 50 will differ physique to physique.
Doug Taylor - 31 Dec 2005 23:11 GMT >> I was also admittedly more or less mislead into wishful thinking that >> IMRT would result in little or no sexual side effects. Wrong. [quoted text clipped - 4 lines] >high for a few minutes a day for 35 days out of 50 will differ physique to >physique. I'm sure this is the case for surgery and seeds as well: there are innumerable variables to consider.
While I still maintain that it is counter intuitive that removing or radiating to smithereens the prostate and damaging or destroying the nerves that enable erections won't have a deleterious effect on sexual function and pleasure experience, I will concede that it is pointless to argue. All experiences are subjective and there will be as many different outcomes and opinions as there are patients.
In counseling a newbie who is trying to decide on a treatment, my main point is that the patient should resign himself that his sex life "very probably" or "most likely" or "more often than not" will be impaired by any treatment. Choose a treatment based upon other factors first: age of patient, extent of tumor, gleason, psa, and the other side effects, etc., with sex near the bottom of the list.
Then when the surgeon or the rad. onc. has done his or her job, and lowered the psa to negligible, the patient will have the opportunity to be pleasantly surprised with a good sexual performance outcome than devastated by a bad one, eh?
I.P. Freely - 01 Jan 2006 01:34 GMT > As a multi sport athlete, my treatment choice of IMRT was greatly > influenced by my refusal to accept ANY risk of urinary incontinence > post treatment. Sorry, but there was no way I was going to face the > next 20 or 30 years of my life with a potentially leaky bladder while > cycling (road and off-road), skiing (downhill and x-c), and speed > skating (ice and inline). Better dead than a couch potato :-) Potato, potahto; and potential, schmotential: my leaky bladder hasn't cost me one minute of play time. Diapers work fine for dry land sports, and in the water ... well ... what's the difference? Although I am still getting a LITTLE drier after 14 months post-op, I doubt I'll ever be wearing khakis sans pads, especially since I'm still wearing ordinary Depends, not just pads, 24/7 when not in the water (they deteriorate like a roll of TP in the water). Ain't my problem, and nobody knows anyway unless I tell 'em.
It strikes my as odd you chose a treatment more likely than surgery to give you bowel problems, even if they take years to show up. It was exactly that threat that led my rad onc to advise me against radiation as soon as I answered her question, "Which would bother you more, urinary or bowel in continence?"
Believe me when I say I far prefer damp diapers to lumpy or splooged diapers.
I.P. and that ain't all
Doug Taylor - 01 Jan 2006 21:15 GMT >It strikes my as odd you chose a treatment more likely than surgery to give >you bowel problems, even if they take years to show up. It was exactly that >threat that led my rad onc to advise me against radiation as soon as I >answered her question, "Which would bother you more, urinary or bowel in >continence?" My rad. onc. advised that long term bowel problems are possible but not likely (less than 20% of patients).
So far (3 years post) so good. And I'm not losing any sleep worrying about it.
You choose your poison and then you should never second guess or look back, eh?
I.P. Freely - 02 Jan 2006 03:03 GMT > My rad. onc. advised that long term bowel problems are possible but > not likely (less than 20% of patients). > You choose your poison and then you should never second guess or look > back, eh? You've heard 20, I've heard up to 50 ... but I wouldn't accept even the 20 given any other options. Personal choices.
I.P.
Doug Taylor - 02 Jan 2006 20:25 GMT >> My rad. onc. advised that long term bowel problems are possible but >> not likely (less than 20% of patients). [quoted text clipped - 3 lines] >You've heard 20, I've heard up to 50 ... but I wouldn't accept even the 20 >given any other options. Personal choices. All the different opinions and information available is why all men must make their own treatment choice after consulting their own physicians who have actual medical degrees and get paid for their opinions; not be influenced by hearsay, myth, and bullshit from unqualified non-professionals; and never second guess their choice after making it, because that it is completely counter productive.
I.P. Freely - 02 Jan 2006 22:40 GMT >>You've heard 20, I've heard up to 50 ... but I wouldn't accept even the 20 >>given any other options. Personal choices. [quoted text clipped - 4 lines] > opinions; not be influenced by hearsay, myth, and bullshit from > unqualified non-professionals; You've misunderstood, and are preaching to the choir. My "hearsay, myth, and bullshit" sources are among the most revered 20-40 sources of PC clinical data I could find in 6 months of full-time, trained digging with the help of this wonderful group. You've probably heard of, and maybe read, every one of those sources, ranging from Walsh to the ACS. I don't do anecdotes, don't make IMPORTANT decisions based on a mere handful of uro oncs. On the contrary, I changed the mindset of an entire university/VA joint teaching hospital oncology review board with the facts I gleaned from my sources -- including their own PC book. The half-dozen uro-oncs I consulted personally before I even came to the attention of that board were just a drop in my research bucket.
> and never second guess their choice after making it, > because that it is completely counter productive. It was only because of my research that I haven't second-guessed my choices, even though one of them left me in Depends and another willingly increases my risk of dying FROM PC. Had I been willing to place my trust in "merely" 8-10 senior interdisciplinary oncology reseachers/ professors/ practicioners/ authors working together on my case, my past 14 months would have been dramatically different and my second-guessing would have made me miserable.
NOW IF ONLY THAT LEVEL OF EFFORT WOULD MAKE OUTLOOK EXPRESS WORK, I'D BE HAPPY. (Don't even say it: Thunderbird's giving me fits, too ... stuck in password hell even though I don't WANT no steenkin' password.)
I.P.
Brian - 04 Jan 2006 01:46 GMT > NOW IF ONLY THAT LEVEL OF EFFORT WOULD MAKE OUTLOOK EXPRESS WORK, I'D BE > HAPPY. Outhouse express DOES work, as well as it works.
What's happening is that YOU are expecting O.E. to be a well-designed and well-implemented mail tool, that is expecting properly processed sow's ears to be the same as silk purses.
I.P. Freely - 04 Jan 2006 05:56 GMT > Outhouse express DOES work, as well as it works. > > What's happening is that YOU are expecting O.E. to be a well-designed and > well-implemented mail tool I just want it to post messages when I hit SEND and receive them when I hit SEND & RECEIVE. About 50% of the time it refuses, for anywhere from minutes to a day or two. Many times it won't even open at all. So far, neither Dell nor Microsoft have been able to fix it for two years.
I.P. on Dell
kh - 06 Jan 2006 01:50 GMT > > NOW IF ONLY THAT LEVEL OF EFFORT WOULD MAKE OUTLOOK EXPRESS WORK, I'D BE > > HAPPY. [quoted text clipped - 4 lines] > well-implemented mail tool, that is expecting properly processed sow's > ears to be the same as silk purses. Yes, as someone once said, "I'm guessing you'd be surprised how many people here are totally convinced, to the point of getting angry about it, that one man's experience outweighs peer-reviewed statistics based on 10,000 patient histories."
O.E. is not a well-designed or well-implement mail tool but some folk will stick with obsolete technologies and get angry when that's pointed out to them.
kh - 03 Jan 2006 13:28 GMT > My rad. onc. advised that long term bowel problems are possible but > not likely (less than 20% of patients). [quoted text clipped - 4 lines] > You choose your poison and then you should never second guess or look > back, eh? My rad-doc cautioned me that there was historic evidence for serious bowel injury from seeding and EBRT but that they had modified their treatment protocol to reduce this. Since they did that 10 years ago, in their thousands of cases, they have not had a single serious problem.
I didn't press for clarification but I'm guessing that they did not include occasional diarhea or constipation as a "serious" problem.
The modifications to their treatment protocol included,
Drugs, both OTC and prescription, to reduce bowel problems.
Precision guiding of the seed implantation. Palladium-103 only.
Improved dosage calculations.
IMRT replacing 3D-CRT and older, less focussed external radiation.
A weekly debrief during the external radiation.
Patient directives to avoid bowel irritating foods, eat smaller meals.
Each item contributed an insignificant "edge" but the probabilities add up.
My experience - I had NO bowel issues. No bleeding, no bowel incontinence, no urgency. I looked for problems.
I am at seeding + 16 months. If anything, I am more regular and go better than before. I eat a varied diet now and am not especially careful to have balanced meals. I do have a green salad for one meal a day, and enjoy many items that were forbidden during the 3 months post seeding.
I come here and read rants about colon problems from surgery advocates. Well, at our age, anything can happen but I believe that the colon-bowel problems were solved 10 years ago. It is in the literature but it is no longer an issue.
I also believe that you and I are past any "radiation-as-a-trigger" bowel problem. Things can happen but, here is the touchstone:
I've read this group for about 2 years, I don't recall ever seeing any Rad-grad asking about colon-bowel problems. I've also dragged the archives at "seedpods" and not found anything.
There are many discussions on urinary stoppage at the 4-6 week point which suggests that rad-grads are discussing what happens to them.
I believe that the distribution of guys choosing surgery and rad-seeds-EBRT is about equal. Given that there are no other discussions of rad side effects, I infer that there are no other serious side effects.
There are lots of minor ones. I had fatigue for about 6 months but there were other things going on, including an employer that was going under, management clawing and fighting for their jobs, halucinating about revenue and customers.
My libido is WAY down but 9 months post-Lupron, I'm still clocking low-normal Testosterone levels, 299, 279. I can manage a serviceable erection without resorting to chemical help so I guess I don't have any complaints.
As you say, the issue is how effective was the treatment. One can only hope for the best and live life to the fullest.
I.P. Freely - 03 Jan 2006 18:27 GMT > I do have a green salad for one meal a day I hope that doesn't mean primarily lettuce, which is a pretty useless food, not much more than a way to package water. We need all the colors of veggies and fruits we can get -- there are even some blue ones available, I've heard -- for a well-rounded diet.
> I come here and read rants about colon problems from surgery advocates. I've not noticed that. The primary advantages I've seen mentioned for surgery were related more to post-op pathology, leaving the window open for adjuvant radiation if necessary, the emotional boost from "getting the beast the hell out of our bodies", the chance for a compete cure with more tolerable (by personal choice) permanent SEs ... things that play a big and justified part in making advocates out of some people.
But attaching the "advocate" word implies undeserved bias, which is not evident in many or most surgery recommendations I see here ... but is still why I try to avoid advocating any treatment. Most mentions of bowel problems I see here are responses to rad advocates' unsubstantiated claims that rad presents no bowel threats. In fact I've seen "surgery graduates" point out that rad fits some scenarios very well, based on the literature.
> I believe that the colon-bowel problems were solved 10 years ago. > It is in the literature but it is no longer an issue. Then please explain why my rad onc, who is part owner of a new high-end cancer rad center with state-of-the-art radiation bells and whistles, advised me against rad the minute I said bowel problems were near the top of my $#!+ list. And present some proof that the bowel threat is history, because I'm going to need that for my own decision if and when my PSA starts up again; my docs advise rad for me at that point and I want all the facts -- not anecdotal claims; FACTS and statistics -- before choosing my next step.
> I also believe that you and I are past any "radiation-as-a-trigger" > bowel problem. Tell that to the trials and books that say your BELIEF is premature at 16 months. And if you want rational, informed, pragmatic people to share your BELIEF, please back it up with facts. MANY of us need to see them for ourselves, since a pt's BELIEFS are of almost no use in others' big decisions.
> Given that there are no other discussions of rad side effects, > I infer that there are no other serious side effects. That's a stunning admission. Not only have you drawn a PC-world-shaking conclusion from a buncha guys and gals hanging around the keyboard, but it is based on assuming that if it isn't discussed, it doesn't exist. Tell that to the legions of osteoporosis pts whose docs didn't mention it until their bones began snapping.
> My libido is WAY down but 9 months post-Lupron, I'm still clocking > low-normal Testosterone levels, 299, 279. I can manage a > serviceable erection without resorting to chemical help so I guess I > don't have any complaints. I would have ONE complaint with those T levels: my Lupron is not suppressing my T to castrate levels. What the heck good's ADT if it doesn't do its job of driving T to castrate levels? Why should we tolerate the med's cost, discomfort, and some SEs without getting its cancer-fighting benefits?
> As you say, the issue is how effective was the treatment. > One can only hope for the best and live life to the fullest. I suggest a third element: One should learn a ton of facts to support their actions and their hopes, and provide those facts when advocating a choice for others, lest the advocacy ring hollow.
I.P.
Doug Taylor - 04 Jan 2006 02:16 GMT >> I do have a green salad for one meal a day > >I hope that doesn't mean primarily lettuce, which is a pretty useless food, >not much more than a way to package water. We need all the colors of veggies >and fruits we can get -- there are even some blue ones available, I've >heard -- for a well-rounded diet.
>I suggest a third element: One should learn a ton of facts to support their >actions and their hopes, and provide those facts when advocating a choice >for others, lest the advocacy ring hollow. I suggest that it is not the role of survivors and members of a support group to advocate a choice for others at all. The ONLY proper advocates of a treatment for a particular patient are his own personal physicians and his wife.
The role of survivors and support group participants is to tell their own story, period. Certainly, to cite the facts and resources that supported their treatment decision, but not to extrapolate to others, which is both presumptuous and suspect. The last people I listen to in the context of PCa treatments - as well as religion and politics - are True Believers who are convinced that Their Way is the Only Way, for everybody.
It ain't.
I.P. Freely - 04 Jan 2006 06:05 GMT > I suggest that it is not the role of survivors and members of a > support group to advocate a choice for others at all. I don't, even when asked to do so, because I agree with you.
> The role of survivors and support group participants is to tell their > own story, period. Certainly, to cite the facts and resources that > supported their treatment decision, but not to extrapolate to others, > which is both presumptuous and suspect. NOW you're asking for it!!! '-) I'm guessing you'd be surprised how many people here are totally convinced, to the point of getting angry about it, that one man's experience outweighs peer-reviewed statistics based on 10,000 patient histories.
I.P.
Doug Taylor - 04 Jan 2006 14:25 GMT >NOW you're asking for it!!! '-) >I'm guessing you'd be surprised how many people here are totally convinced, >to the point of getting angry about it, that one man's experience outweighs >peer-reviewed statistics based on 10,000 patient histories. One man's experience is valid for that man, whatever the statistics for most men.
For example, I am suspect when a man claims his sex life is BETTER after PCa treatment. I believe that is counter intuitive. But who am I to gainsay someone else's experience?
I repeat: your experience is yours and you are free and encouraged to report to others what it is do that others may profit by it. But as soon as you begin preaching and advocating that your way is THE way, you are overstepping your bounds.
I.P. Freely - 05 Jan 2006 02:06 GMT > I.P. wrote >>I'm guessing you'd be surprised how many people here are totally [quoted text clipped - 5 lines] > One man's experience is valid for that man, whatever the statistics > for most men. Why do I begin to think you're TRYING to be obstinate? What these people have said is that one man's experience means more TO EVERY PC PATIENT IN THE WORLD'S DECISIONS than large-scale statistics. (I don't know how they select this "one man", in one case it was a husband, another was a brother-in-law or some such choice.)
> For example, I am suspect when a man claims his sex life is BETTER > after PCa treatment. I haven't seen that, but, as you say, it's his opinion, and someone probably requested it.
> I repeat: your experience is yours and you are free and encouraged to > report to others what it is do that others may profit by it. But as > soon as you begin preaching and advocating that your way is THE way, > you are overstepping your bounds. I agree. That's why I not only avoid doing that, but also usually object when others take that stance. There are some PC scenarios which lead to no-brainer choices, but they are few and far between and STILL subject to personal priorities.
I.P.
Pops - 05 Jan 2006 17:07 GMT Thought I'd throw in my two decrepit bits
Your decision.
I'll tell you how mine went...
First I set priorities: 1) Quality of Life 2) Length of Life 3) Non QOL or LOL affecting SE's 4) Losses of Functionality or Options due to Treatment
(#4 turned out to be a big one!!)
Then, research, research, research...
1) Found most statistics to be useless. Controls not convergent (too many changes in diagnostics, treatments, demographics over the statistical time frame), Not enough time/data (standard deviation pukes!).
2) From information available and my situation (yours will, of course, be different) the major treatment options. EBRT, seeds, RP, LRP,RLRP) showed no confirmable (screw the statistics) difference in rate of success for treating the PCa. I was not particularly concerned about the standard SE's (sexual or continence). Just wanted to get rid of the cancer (see priorities).
This left me with lower priority items to evaluate and that evaluation was how the proverbial sh.t-hit-the-fan for me.
1) Recurrence treatment: If surgery (ANY form) doesn't work, salvage radiation is possible. If radiation doesn't work, surgery is generally not an option. At this point there are only two "curative" treatments for PCa: surgery and radiation. Seemed to me that I ought to maximuize my "curative" options so surgery went to the top of my list. Someone posted here that there is NO cure for Pca. They are statistically right, and that can be said for almost any (probably all) cancers. So, if you "screw the statistics" you're left with this as a qualitative decision. Options are still options, as many as you can gather around you.
2) OK - which surgery? This one was tricky. Most surgeons will not argue about the benefit of being able to feel as well as see. LRP and RLRP eliminate the ability to make tactile analysis and decisions. Having said that, what are the downsides of RP? Recovery, infection, blood loss - all temporary. Any permanent? Yep!! (I'm not completely competent in explaining the following phenomenon so feel free to jump in) A vertical incision the size of RP - from the belly-button to the you-know-what - severs many small and medium size blood vessels, both arterial and veinous. Al these vessels don't generally "grow back", but some must if the tissue they nourish is to survive. Some of the load is taken by "going around" but much is though less-than-perfect bridging of the incision during healing. Think of it like the difference between normal and scar tissues. Anyway the idiom might be stated as "not a good idea to cut twice in the same place". Twice may be viable, three times, from what I understand is a definite no-no. That has certain implications if you need to undergo successive surgeries in the same organ area - like the colon or the stomach. I was lucky (and unlucky) to be provided with an example with my mother-in-law. She had severe gastro-intetinal problems all her life (her own fault). She had her stomach REMOVED, part of her Colon removed and one other (can't remember what for) - all in the same general area. Her third incision (same area) never really healed. Her final downfall necessiated surgery to correct a blood flow problem - in the same area. They couldn't do it! There was no way they could make any kind of an incision and not induce overwhelming tissue death (they got a better name for that but I can't think of it now). Anyway, she died. When you think of it, it makes simple sense - cutting into ones flesh never has an overall positive impact - there is always trauma - some is always permanent (scar tissue at the least). The less cutting that has to be done, the less trauma is sustained. Makes common sense to me.
There was a final decision. Who and where. Everyone wants the best surgery/surgeon possible, however IMHO the length of a surgeon's credentials is asymtotic to the benefit derived. My local oncologist had executed 100's of successful LRP's and `1000's of successful RP's. His bedside manner was less than optimum. He was direct and concise - I had to remember to ask lots of questions - he didn't offer much outside the "necesssities" unless pressed, but then he was always forthcoming and accurate. He could perform the surgery locally and that meant my familiy and friends could be around me. Back to attiude and support is everything. The facility was top notch and state-of-the-art surgically (not so great post care/recovery, but ya can't have everything). I chose that option. I could have gone to Sloan, or Roswell, or a dozen other highly recognized facilities - my insurance would cover it, but I would be alone (except fo rmy wife - of course). What was available locally was significantly better than "just good enough". I chose to opt for my support network. I'd do it again - it meant everything.
A quick story before I leave you (I hear you say, "Thank God!!").
At my six month follow-up my uro gave me a memo that stated that he was leaving the area for a new teaching position. At the end of the appointment (we had become relatively good friends) I asked him why.
He smiled, "I can't get this hospital to invest in a robot!"
My retort, "You have always said that LRP was as good if not better than RLRP!!"
His reply, "It is, in my hands. A computer can't make changes to adjust for the unexpected."
"So why?" I repeated.
"Because that's what the patients want, no matter what I tell them." he replied, "There are lots of less experienced and less capable surgeons our there, and the robot doesn't make mistakes if everything is as expected. In my opinion robotic surgery provides me with less information and ability to analyze the situation than LRP does, and of course much less than what RP does, but you got to be good for those, really good. I think I am..."
"So the paitent rules?" I quipped, smiling.
"Yep!"
He's now at Mass General...
See Ya!!
DonC - 05 Jan 2006 17:35 GMT > Thought I'd throw in my two decrepit bits > 2) OK - which surgery? This one was tricky. Most surgeons will not [quoted text clipped - 6 lines] > you-know-what - severs many small and medium size blood vessels, both > arterial and veinous. I'll add my two bits here.
"A vertical incision the size of RP - from the belly-button to the you-know-what......"
My vertical incision was one third that size. Less than 4" long. I feel NO after effects from the cut blood vessels.
I'd like to hear from others going the RRP route what size incision they had. Do I hear 3" ?? : )
JK@work - 31 Dec 2005 17:59 GMT Sex is great..... even limp sex is fun.... it's getting old that's a drag. Hey guys we're all in our 50's-60's.... plus our wives aren't 23 anymore either. Our sex drive has been on the downslide for awhile now, and PCa treatment has just made it that much quicker. Let's not forget that sex is just another thing to do. Exactly where it falls on your top ten list may vary. For some it's way at the top, along with drinking beer until you puke. For others it's somewhere between having a good bowel movement and shooting animals.
 Signature "Don't be offended I'm just SNARKY" JK Sinrod Sinrod Stained Glass Studios http://www.sinrodstudios.com/ Coney Island Memories www.sinrodstudios.com/coneymemories/
Steve Kramer - 31 Dec 2005 21:59 GMT > The cop said he was blunt. I'm more blunt (a lawyer!). Blunt? Ever heard of an emination of a pernundrum? I think there is nothing blunt in a lawyer's world. ;-)
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