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Medical Forum / Diseases and Disorders / Prostate Cancer / June 2005Recent Diagnosis of PC! Advice on Surgery vs radiation please?
I was recently diagnosed with Prostate Cancer (Gleason 6, stage T1C and a PSA of 13). I am trying to decide whether to go with surgery or radiation. I have been told that it will take up to 6 months to recover from surgery, and that afterward I will have 10% chance of being incontinent, and 60% chance that I will unable to have an erection, even with nerve sparing surgery. I got a second opinion from a radiation oncologist who felt that the adverse effects of radiation would be about that same, though some of the side effect might take longer to present themselves. His comment was that in my situation "you might as well toss a coin". Are these numbers realistic? Is there any indication as to which treatment option might be better? TIA ANO I had an RRP one year ago. My urologist also said that radiation and surgery would be about the same for ED problems after 2 years (with nerve-sparing). My erections are fine now using 20 mg of Levitra. I think the 60% figure for non-erections is high. My uro quoted closer to 20%. Advantages of surgery: (1) full pathology report on whether Pca was contained (not a guarantee it won't return), (2) second chance for salvage radiation if it does return. > I was recently diagnosed with Prostate Cancer (Gleason 6, stage T1C and a > PSA of 13). [quoted text clipped - 12 lines] > TIA > ANO For a third option, check out: http://www.prostateweb.com/pdfs/ASCO_PCF_02_2005.pdf Besides having better statistics that surgery and radiation, you have the option of going with high testosterone supplementation after the initial treatment. In theory this should result in a longer life expectancy than men your same age who do not have prostate cancer and do not receive the high testosterone. Ed Friedman I too was recently diagnosed, PSA 5.6, Gleason 6 and 7 (3+4), T1 and T2 and would like to explore all options available. I would be interested to read about Ed Friedman's 'third' option, but the site would not load (not available). Is there another way to the information? This may have been discussed before, but as a newcomer I will ask, - I thought the idea was to suppress testosterone, not to supplement it. Is this killing with kindness? ie., what is the rationale behind such a therapy? Thanks >> I was recently diagnosed with Prostate Cancer (Gleason 6, stage T1C >> and a PSA of 13). I am trying to decide whether to go with surgery or [quoted text clipped - 23 lines] > > Ed Friedman > I too was recently diagnosed, PSA 5.6, Gleason 6 and 7 (3+4), T1 and T2 > and would like to explore all options available. I would be interested [quoted text clipped - 7 lines] > > Thanks Sam, Something is definitely wrong with www.prostateweb.com. You can try dropping the www, that seems to work for now. The rationale behind high testosterone treatment has been demonstrated by my paper at: http://www.tbiomed.com/content/2/1/10. Basically, my model is the only one consistent with all known published experimental results, including the latest finding that obese men are more likely to develop prostate cancer "despite" having high estrogen and low testosterone levels. The paper is geared to the level or research scientists, so it may be hard for you to understand, but I will be glad to answer any of your questions. Playing devil's advocate against my own position, in the best case surgery or radiation may offer a 3% chance of dying from PCa within the next 6 years, but a 90% chance of being cured. In the worst case for intermittent triple hormonal blockade, you have 0% chance of dying from PCa within the next 6 years, but a 0% chance of being cured. It is possible that there might be a finite chance of dying within 15 years, but the most any patient has gone is 13 years so far (with none developing distant metasteses), so you will have to wait a few more years to know for sure. Of course, if you start with intermittent triple hormonal blockade, you always have the option of doing surgery or radiation later, after you pass 6 years with 0% chance of dying. Possibly, there may be a cure discovered by then totally different from anything now available. The question to me is, do you play "Russian roulette" with localized treatment, gambling that you'll be one of the lucky ones for the next 6 years, or do you take the sure thing with 0% chance of dying from PCa within the next 6 years? That is a decision that each individual has to make for themselves. Ed Friedman > I too was recently diagnosed, PSA 5.6, Gleason 6 and 7 (3+4), T1 and T2 > and would like to explore all options available. I would be interested > to read about Ed Friedman's 'third' option, but the site would not load > (not available). Is there another way to the information? You should be very careful about information you glean from the internet. Ed Friedman has a Ph.D. in Biophysics and Theoretical Biology from the University of Chicago. He is currently a computer administrator in the Mathematics Department at the University of Chicago. His paper was published in Theoretical Biology and Medical Modelling. I'm sure he has thought carefully about the subject and brings considerable expertise to it. It would be ideal if the leading researchers in prostate cancer research were to read his paper and evaluate its significance, but I suspect that won't happen. Medical researchers tend to be somewhat deficient in mathematical modelling and seldom go beyond standard biostatistical methods. But it should be said that on the medical side, there are few who support the idea that hormone therapy, no matter how subtlly applied, should be a primary method of treating prostate cancer. Ed may be onto something important, and in time we may look back and see this as a significant departure. But laymen---and I include myself in this, despite being a professional mathematician---are not in a position to judge that at present. So we may just have to stick with the tried and true advice of the best medical authorities we can find. P.S. The fact that Ed is not employed doing biological research is of no relevance here. Job markets in recent years, coupled with personal considerations, often lead highly qualified people to work as computer administrators rather than pursuing the fields they earned their Ph.D.s in. > This may have been discussed before, but as a newcomer I will ask, - I > thought the idea was to suppress testosterone, not to supplement it. Is [quoted text clipped - 35 lines] > >>>> at http://www.TitanNews.com <<<< > -=Every Newsgroup - Anonymous, UNCENSORED, BROADBAND Downloads=- > You should be very careful about information you glean from the > internet. Ed Friedman has a Ph.D. in Biophysics and Theoretical Biology [quoted text clipped - 7 lines] > researchers tend to be somewhat deficient in mathematical modelling and > seldom go beyond standard biostatistical methods. Leonard is mostly correct in all that he states. However, a faculty member here has spread the word, and he showed me a copy of the e-mail he got back. Quoting from that e-mail: "Your prostate cancer article is creating quite a stir at UCSF and Stanford ... I have a whole string of emails from them, ranging from saying it is interesting and exciting to saying that it would increase cancer and do more harm than good, etc." So, I'm expecting that in the upcoming months experiments will be done by some of the leading researchers in prostate cancer research to verify my model. Also, while Leonard makes it clear that he is not himself a doctor, he has not yet found any doctor who has found any holes in my model or found any experiments that my model does not explain. My own doctor, on the other hand, understands my model and believes that it is totally correct. Ed Friedman > I too was recently diagnosed, PSA 5.6, Gleason 6 and 7 (3+4), T1 and T2 > and would like to explore all options available. Your description of the diagnosis is confusing. Either the tumor is Gleason 6 or Gleason 7 = 3+4. Similarly, either it is T1 or T2. In either case, there should be a letter after the number, e.g., T1c. Also, what is your age? There are a whole range of possibilities depending on the answers to those questions. For example, if you are in your late 70s and have a Gleason 6 tumor, I think most highly qualified urologists would recommend watchful waiting, i.e., no immediate treatment. On the other hand, if you are in your early 50s, with a Gleason 7 tumor, most highly qualified urologists would probably recommend surgery. If you are somewhere in between, surgery or radiation might be appropriate., or even watchful waiting in certain specified circumstances. A few ocologists recommend early use of hormone therapy, but if I remember correctly mostly in cases where the PSA level is higher. But they seem to be in a distinct minority. The overwhelming bulk of doctors who treat prostate cancer reserve hormone therapy for metastatic prostate cancer. Peter Scardino, a world recognized researcher and clinician in prostate cancer at Sloan Kettering in New York has written a book I've just read. I found it very comprehensive and quite well balanced about the choices that men like you have. One of the points he makes, echoing what other experts have said, is that it is often more important that the physician who treats you is highly qualified and has a good track record than that you use a specific method. The doctors you may have available may be restricted by where you live or by what your insurance plan will pay for. So that can be an important consideration. >> I too was recently diagnosed, PSA 5.6, Gleason 6 and 7 (3+4), T1 and >> T2 and would like to explore all options available. [quoted text clipped - 25 lines] > restricted by where you live or by what your insurance plan will pay > for. So that can be an important consideration. Thank you all for your responses. Leaonard- I was vague- I am 65, and beginning to feel it, although at heart I am 19. Left Side- Gleason Grade 3, Score 7 ( hence the 3+4 ) involving 2 of 4 cores, 10 mm and 5 mm of tumor line length, involving 95% and 50% of cores Right Side Gleason Grade 3, Score 6, involving 1of4 cores 5 mm of tumor line length, involving 40% of core. Pelvic MRI with coil shows 8x6x8 mm focus of low T1 and T2 signal intensity, and another 4x5 mm focus of low T1 and T2 signal intensity representing prostate carcinoma. I just bought the Scardino book. According to those I have spoken to so far, I am candidate for Surgical removal, or optionally IMRT radiation treatment, and separatelyI want to exlore Proton treatment. In answer to my question the surgeon said he reserves hormone treatment until after surgery, and the oncological radiologist (or is it radiological oncologist) said that he would give hormone treatment right away, for statistically proven better results. (Both are at the same institution.) Since I'm here, what is the story about HIFU, if anyone knows? sam wrote...snip... > Pelvic MRI with coil shows 8x6x8 mm focus of low T1 and > T2 signal intensity, and another 4x5 mm focus of low T1 and T2 signal > intensity representing prostate carcinoma. Hi Sam...I suspect the T1 and T2 mentioned above are related to signal relaxation times observed in magnetic resonance experiments and not the clinical stage. Ask your doc if you are T1c or T2a/b/c. If something was felt upon DRE the you are T2a/b/c/. if not then you are T1c. > Since I'm here, what is the story about HIFU, if anyone knows? You can find articles or discussions about HIFU in PubMed or in this newsgroup, respectively. In a nutshell, while it will probably get better with time, the short-term results available today suggest that recurrence rates with HIFU are higher than those attainable with surgery or radiation. It also has a high rate of causing impotence. It is not approved within the US, so you'd have to travel to Mexico, europe, etc, and your insurance won't cover it (and it is expensive)...Best wishes and good health, Ron >>> I too was recently diagnosed, PSA 5.6, Gleason 6 and 7 (3+4), T1 and >>> T2 and would like to explore all options available. [quoted text clipped - 35 lines] > 2 of 4 cores, 10 mm and 5 mm of tumor line length, involving 95% and 50% > of cores I think your tumor is Gleason 7=3+4 because that trumps the Gleason 6 on the other side. > Right Side Gleason Grade 3, Score 6, involving 1of4 cores 5 mm > of tumor line length, involving 40% of core. > > Pelvic MRI with coil shows 8x6x8 mm focus of low T1 and > T2 signal intensity, and another 4x5 mm focus of low T1 and T2 signal > intensity representing prostate carcinoma. I don't know anything about pelvic MRIs with coil. In the past MRIs weren't too helpful in diagnosing prostate cancer, but the newer methods with the probe inserted in the rectum are supposed to provide better information. "T1" and "T2" may mean something different from the usual meaning. The usual clinical classification distinguishes T1c, which means the doctor doesn't feel anything on digital rectal examination from T2a, b, or possibly c which mean the doctor does feel something with the letter indicating the size of what he feels and whether it is on both sides. The MRI terms may be somehow related. However, the biopsy does show that you have cancer on both sides. You should ask your doctors just what the terms mean and how they relate to DRE findings. The latter is useful to know because the Partin tables, which are used to predict the surgical outcome, are based in part on the T staging. > I just bought the Scardino book. > [quoted text clipped - 5 lines] > he would give hormone treatment right away, for statistically proven > better results. (Both are at the same institution.) I apologize for not discussing that in my previous response. Temporary use of hormone therapy is often used in conjunction with radiation therapy. It may shrink the prostate making it easier to radiate and it may also make tumor cells more susceptible to radiation damage. This is different than using hormone therapy as a primary method to treat early prostate cancer. From what I've read, I stick with what I said. As of now, few oncologists consider this appropriate. It is quite possible that with better understanding of the mechanisms involved, that things will be different in 10 years. But unfortunately, you have to make a decision now. > > Since I'm here, what is the story about HIFU, if anyone knows? Scardino comments on it. I don't rmember just what he said, but I don't think he was very positive about it. By the way, at age 67 I had a T1c diagnosis with PSA 4.5 and Gleason 7=3+4. That is not too different from your diagnosis. I had surgery 5 years ago and so far I've been PSA free. I never had any significant incontinence, but I was impotent for 18 months. At present, I can sometimes manage without anything, but 50 mg of Viagra improves the situation. Of course, you may do better or worse, so you shouldn't use my case as a guide. The one important thing to keep in mind is that with a Gleason 7, you don't want to fool around. For some Gleason 6 cases in a man your age, it is possible to argue that it is not clear that treatment is really necessary and is better than the possible side effects. But for Gleason 7 cases, it is pretty clear that treatment is likely to benefit you. Scardino has some charts showing the likelihood of dying from prostate cancer as opposed to from all other causes for various times after diagnosis. For Gleason 6 case, the majority of the deaths are from other causes. For Gleason 7, the great bulk are from prostatee cancer. On the other hand, early aggressive treatment in most cases appears to produce a cure for Gleason 7 cancers. > ................................................................ > Posted via TITANnews - Uncensored Newsgroups Access > >>>> at http://www.TitanNews.com <<<< > -=Every Newsgroup - Anonymous, UNCENSORED, BROADBAND Downloads=- Our expert on HIFU was Canada Bob. He doesn't talk to us anymore, but his address was robert01942@hotmail.com  SignaturePSA 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 PSA .07 .05 .06 .05 non Illegitimi carborundum > >> I too was recently diagnosed, PSA 5.6, Gleason 6 and 7 (3+4), T1 and > >> T2 and would like to explore all options available. [quoted text clipped - 57 lines] > >>>> at http://www.TitanNews.com <<<< > -=Every Newsgroup - Anonymous, UNCENSORED, BROADBAND Downloads=- > I was recently diagnosed with Prostate Cancer (Gleason 6, stage T1C and a > PSA of 13). [quoted text clipped - 12 lines] > TIA > ANO Your age and health are also factors in your decision. Also did the Radiation option include Hormone Therapy??? All the below assumes you are in reasonably good health and have no pre-existing impotence or incontinence issues. If you tell us your age and give us a clue about your health status, weight, etc., we can offer much better comments. > up to 6 months to recover from surgery Around 6 weeks for "open" "RRP" surgery. A lot less for laparascopic surgery. > 10% chance of being incontinent With a really good surgeon, <2% of having no control at all. Another 3% of "leaking" when you cough, sneeze, etc. Another 15% of leaking a few drops per day (small stain on your underwear, but no need to wear a pad). > 60% chance that I will unable to have an erection Starting with excellent function pre-op, with a really good surgeon, and if both nerve bundles can be spared, 30% chance that you will be unable to have an erection sufficient for intercourse (you may need something like Viagra or other forms of assistance, though). This decision is one only you can make. Read books (Scardino, Walsh, Strum). Ask questions. Shop around for the very best treatment. Be prepared to travel. Reasons I chose surgery (I have the same numbers as you, age 47, thin, fit): - After surgery you get a pathology report that tells you how likely it is that they got all the cancer and how aggressive/widespread it was. If the pathology is good, you get a significant psychological boost. If it is bad, at least you know you need to take further action. - It is hugely easier to "mop up" left-over localised cancer using radiation after surgery than it is to attempt surgery after radiation has failed (radiation causes scarring that makes surgery very difficult and surgical side-effects much worse). SignaturePeter Headland Relax,don't let those Drs. bully you. Study all available options then make your decision. Our m2m support group (over 400) have tried everything and now favor Triple Hormonal Blockade as the least invasive and most sucessful. You have a lot of time...use it wisely good luck bob r "Bob r" <snuffy913@webtv.net> wrote . > Our m2m support group (over 400) have tried everything and now favor > Triple Hormonal Blockade as the least invasive and most sucessful. Wow!!! All the trials and meta-analyses of all the trials I've read, verified by a team of oncologists and offered for rebuttal to this forum, emphasized that THB, CAB, TAB -- whatever acronymn one wants to use -- is proving of no advantage and sometimes even harmful, compared to simple ADT monotherapy. Has some new evidence overturned that finding in just the past three months? I.P. Our evidence of success is not a statistic but rather the happiness of the many wives whose spouses are now cancer free or have psa's under.4 Stats & surveys aren't always what they seem to be but our results are real... I am not trying to convert you to THB (triple hormonal blockade) just telling you that it worked very well for us. yours truly, bob r > Our evidence of success is not a statistic but rather the happiness of > the many wives whose spouses are now cancer free or have psa's under.4 [quoted text clipped - 5 lines] > bob r > Bob r, If you are going with THB, then you might be interested in the recent paper I have written (http://www.tbiomed.com/content/2/1/10). Basically, what I have found is that anyone on 5AR2 inhibitors must avoid all soy products (and any other foods that bind selectively to estrogen receptor-beta) in order to maintain a decent level of apoptosis. Also, after the initial THB, my paper makes it clear that your best bet is high dose testosterone replacement therapy (coupled with 5AR2 inhibitors, of course). While currently this just holds the cancer in check, as soon as the FDA approves estrogen receptor-alpha blockers, this has the potential to lead to a cure. Ed Friedman Hi. You always will get great responses here and Peter H. really spelled out the options well. I had the open RRP in March. I'm 57, T1c, Gleason 3+4=7 which after surgery was 3+3. My path report was really good with no positive margins or vesicles or lymph nodes. 5 week post-op PSA was undectable. Just more info for you as seen through my own prism. Study, ask, read...get as much info as you can...and THEN...as these great guys taught me...try and find peace with your decision. All the best, Ron B. Chicago Thanks for the replies. Some of you asked M age: 61 Weight: 40lb overweight. General health: Bi-polar and MS. As you can see PC is just one more crappy hand, but I'll bid 1 no trump on it and see what we can do. From the answers I received it looks as though most of you went with surgery, for the same reasons that I am leaning that way. TIA ANO > Thanks for the replies. > Some of you asked [quoted text clipped - 7 lines] > From the answers I received it looks as though most of you went with > surgery, for the same reasons that I am leaning that way. I think more men your age in this group have gone with surgery though I myself went with radiation and, so far, have been happy with the outcome. From the point of view of quick treatment and recovery, and lack of dangerous side effects, brachytherapy may be the best - or maybe not. It's very hard to say. One important factor to consider is the skill of the doctor. Whether you go with surgery or radiation, you want a doctor that treats a lot of prostate cancer and has a good reputation for it. All urologists know a lot about prostate cancer, but not all actually specialize in it, or specialize in surgery for it. The first urologist I met was actually a specialist in female incontinence. He didn't tell me that, but I read it in the resume on his website. He was probably properly trained and acceptably competent, but prostatectomy really was a kind of sideline for him. On the other hand, some members of this group have had prostatectomies done by doctors who have done hundreds of them every year for years and years. I won't say they could do it in their sleep, but when they open up a patient they're not likely to see anything they haven't seen before, or have to fumble through the more difficult parts of the operation. Radiation oncologists also need to know a lot about prostate cancer and have experience with it. Different docs appear to get different results. I think you should also evaluate the doctor using some personal judgment. Does he seem interested or off-hand? Does he appear meticulous and detail oriented? Does he spend time with you or move you in and out of his office at high speed? Best of luck with your decision. Alan PS, when you wrote "M age: 61", did the "M" stand for "Male"? I hope so, because if not, the radiation or surgery might be performed on the wrong organ :) Quite often, the only difference, other than psychological, between surgery and radiation is age. Those less that 50 years old almost have to do surgery. Those older than 70 or 75 often cannot handle surgery. At 61, it's a matter I think of patience. If surgery works, your PSA goes straight to 0.1 or less. With radiation, it takes up to two years to get to nadir and then rarely below 0.1. Academically, you know there's no difference, but I would imagine radiation is tougher on the psyche. SignaturePSA 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 PSA .07 .05 .06 .05 non Illegitimi carborundum > I was recently diagnosed with Prostate Cancer (Gleason 6, stage T1C and a > PSA of 13). [quoted text clipped - 12 lines] > TIA > ANO > I was recently diagnosed with Prostate Cancer (Gleason 6, stage T1C and a > PSA of 13). > I am trying to decide whether to go with surgery or radiation. Talk it through with your docs. Mine (the rad-doc and the uro) said that I was a "terrific" candidate for either and it was *my* decision. I went Rad (8 months of Lupron, IMRT + seeds) with better than textbook results. My main complaint are side effects that I attribute to the Lupron. These include fatigue, joint pain, zero libido for a year. I spiked a fasting blood sugar of 300 but am almost back to normal, 4 months after declining the 3rd Lupron shot. I'm losing weight and taking two 500 mg glugophage pills. I see fasting numbers like 115-125. Not great but I still need to take off 10-15 pounds. The main side effect from the Rad and specifically the seeding was having to pee about every 2 hours during the worse of it, that's a month after the implant. Now, I'm almost back to normal, which is drinking a 20 ounce glass of water before bed and sleeping through, 8, 9 hours. I stopped the Flomax about a month ago. I still can feel some stinging but going or stopping are not a problem. ED? I manage a serviceable erection on 25 mg Vitamin-V. I'll be talking to my primary doc on Monday. He should have the 3rd PSA results for me. The Rad-doc has already cautioned me that this is when the PSA-bounce occurs. We'll also be knocking around the Lupron, blood sugar, issue. I see the Uro in about 3 weeks. I've been cranking up my exercise, my weight is down a bit more, we'll see. My numbers were similar to yours. My open radical retropubic prostatectomy was almost one year ago. I was out of the hospital in three days, walked nearly a mile my next day home. I had excellent urinary control upon removal of the catheter. I enrolled in a drug test for protection my nerves during surgery -- don't know if that is what it was, but had erectile response within a month after coming home. It's not perfect, but it's better than I expected it to be at this point. I have read over and over again, and it was true for me, excellent surgeons produce excellent outcomes. One thing I learned was that men who wanted to hear from the doctor that he "got it all" (or not) -- who wanted an aggressive treatment that allowed a pathological report on the cancer -- these men chose surgery. Other men, who were more comfortable with long-term treatment, and who perhaps were averse to surgery, chose radiation. Both treatments can be extremely effective. One thought: I now consider myself very fortunate that my cancer was caught at a stage that I had this choice to make -- instead of the cancer making it for me. SignatureAge 46 (at surgery) PSA: 1.4 (12/00), 2.0 (7/02), 10.3 (3/2/04), 6.0 (retest 3/18/04) Biopsy 4/5/04 cancer in 10% of one core Gleason 6 (3+3); clinical stage T1c Bone Scan negative; pre-surgery PSA 2.8 RRP 7/27/2004 Pathological stage T2a, Gleason 6 (3+3) ³Tumor confined to prostate" and "Surgical margins free of tumor² On 6/8/05 2:10 PM, in article Xns966F904068888blackholehotmailcom@140.99.99.130, "axolotl" <blackhole@hotmail.com> wrote: > I was recently diagnosed with Prostate Cancer (Gleason 6, stage T1C and a > PSA of 13). [quoted text clipped - 12 lines] > TIA > ANO > I enrolled in a drug test for protection > my nerves during surgery What was the drug? What was the protocol? SignaturePeter Headland >>I enrolled in a drug test for protection >>my nerves during surgery > > What was the drug? What was the protocol? According to Peter Scardino's new book, drugs used to prevent rejection of transplanted organs are being investigated to prevent nerve damage. |
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