February 2012:
After PSA climbed slowly from 3.1 before 2009, it made a fluctuation down to 1.0 in 2010 and then back up to a high of 4.4 in January 2012. Nothing was felt on DRE, but difficulty in urinating was getting gradually worse, PCa3 test was 45 which was considered positive, so urologist performed a biopsy. I was 3 + 3 on less than 3 percent of 2 of 12 cores. Had a second reading of the biopsy done by Johns Hopkins Labs, they concur exactly. Meantime, while looking around in my bladder, they found some nodules that were cancer. The urologist surgically removed them, but warned of likely return. I was retaining 300 cc urine in bladder so urologist wants to do green light laser TURP. I have been taking Flomax for several years.
March 2012:
I was referred to an oncologist for prostate cancer treatment recommendation. He wants to do external beam IGRT. Says seeds would make my urination situation intolerable, and says I need the TURP to make any kind of treatment except radical prostatectomy tolerable. With my numbers, no one is recommending prostatectomy. Oncologist started me on Finasteride daily starting March 5, 2012 to reduce the size of my prostate in preparation for radiation which he wants to begin in August. At the time of the prostate biopsy, Feb. 8, 2012, my prostate size was 45g.
Shortly after being diagnosed with prostate cancer I purchased Doctor Peter Scardino's Prostate Book which is the most up to date I could find, and I recommend it to others as a comprehensive source of authoritative information on the subject. Dr. Scardino is the Chairman of the Department of Surgery at MemorialSloan-KetteringCancerCenter. My urologist and oncologist like him, although they warned me that he has a slight bias towards surgery which they do not share. Dr. Scardino's bias is not obvious, and probably well founded in his experience, but he does make a few remarks which seem rather optimistic about surgery outcomes. His chapters on radiation and other treatments ring true with other sources I have read, although he refers to some refinements in radiation treatment as still experimental which are already mainstream, evidence of progress since the book was written (prior to 2010).
April 2012:
Urologist performed a green light laser TURP. That went well. Now I can pee much better, but frequency is still a little high. I have to get up once or twice at night, but I took a road trip with some other geezers, and I made it longer between restroom stops than anyone else in the car. Six weeks after the TURP my PSA was 0.9.
September 2012:
Had a cystoscopy which showed that the bladder is free of cancer, but there is still a restriction in the urethra and another TURP would probably be needed if I want to have radiation. I have a friend who needed 2 TURPS to get the job done, so I guess this is not uncommon.
PSA is down to 0.7 and the prostate mass is now 18g. The doctors warn me to not get excited; the TURP and Finasteride apparently did a lot for the prostate gland, but the cancer is still likely the same as before. But at least my PSA didn't go up.
Partially due to his remarks on "very low risk" cancer in Scardino's book, and partly due to what I was reading from various sources on the web, I told my doctors I am considering active surveillance. They had not mentioned this option to me, but agreed that I am a good candidate for it, and had no objection. The oncologist did caution me that possibly one out of five low risk cancers become dangerous in a fairly short period of time, and that I would need to have biopsies done at least annually. He feels that PSA and MRI (even the most advanced) are unreliable indicators of tumor growth and aggressiveness. And he has been around the block a few times - trained at UCLA, and has been performing radiation therapy for over 20 years, developing and pioneering many of the techniques used in IGRT and procedures used in salvage therapies.
I had initially thought that AS would be a cakewalk mostly because of things I had read online about using MRI as an indicator of prostate cancer growth. There are a few doctors that state the reliability of state-of-art MRI is higher than a biopsy for tracking the progress of a prostate tumor. One well known HIFU specialist unequivocally states that biopsies are just too risky to perform. He implies that he uses only MRI to stage prostate cancer. (Obviously, my doctors disagree) I found that clinics where they do only focused therapy such as HIFU and cryotherapy seem to rely on MRI, and claim to have the most advanced MRI technology. I wondered if possibly since HIFU practitioners need a very good image of the tumor, they have therefore developed cutting edge techniques with MRI. I interviewed with a coordinator at Dr Ronald Wheeler's HIFU facility, "DiagnosticCenter for Disease" and was told that I was not a good candidate for HIFU due to my enlarged prostate. He told me they do not do a lot of support for people doing AS, but they would be happy to examine me and visualize my tumor with their MRI. Their MRI technique includes a 3T unit with contrast, spectroscopy, and 3D CAD analysis. They worked up a quote for this that would have run me at least $3,000 out of pocket, since they do not work with Medicare based insurance, and in any event they tell me that Medicare and most private insurance companies do not cover the spectroscopy because it is considered experimental. Since I am not a candidate for HIFU, the only treatment they would offer me at this time is nutritional coaching, including their product "Peenuts". I was not impressed by the 23 patient trial they quote in making claims for the product. Not only was it an extremely tiny trial, they have apparently not done any analysis of the patients' cancer progress other than PSA.
My doctors tell me that the HIFU facilities are just plain wrong in trusting MRI in lieu of biopsies, and that focused therapies of all kinds would not be a reliable cure for my tumor. To continue in AS, my urologist wants me to have a saturation biopsy in 6 months - 12 months from the initial diagnosis.
My initial reaction to this was that AS would not be acceptable to me if I had to let them use my bottom for a pincushion every year or so.
October 2012:
I discovered online the widely publicized doctors who claim to use MRI and/or color Doppler ultrasound imaging to reduce the number of cores needed for a reliable biopsy. I thought maybe this is something I could live with.
Searching the internet, there seemed to be only two places in the country doing this: Duke Bahn at Community Memorial in Ventura, California, and Fred Lee, at CrittentonMedicalCenter in Rochester, Michigan.
Both are some distance from SW Florida. A little more searching turned up the Dattoli Institute in SarasotaFL who uses both MRI and a 3D CDU. Contacting them brought a handsome package of information, including a neat little booklet, one of whose chapters made the case for not considering AS - no matter how small the cancer. They do brachytherapy whenever possible, and also have their own version of IGRT, referred to in their literature as "DART". During a phone interview with Dr Dattoli's associate, Dr. Sorace, he seemed to confirm their disdain for AS, but was willing to bring me in for an initial examination and consultation, including an MRI (performed at nearby SarasotaMemorialHospital), and a 3D CDU to be performed at their office. I asked if they would also do a biopsy guided by the CDU if it appeared that the cancer was much larger than suspected. He said that would be done at the hospital at a later date, if necessary.
Despite my doctors' skepticism of the usefulness of their imaging, I decided to give them a go. The MRI at Sarasota Memorial is a 1.5T unit lacking 3D or spectroscopy, but they do use an endorectal coil with contrast and computer analysis, and even my urologist feels their MRI work is as good or better than at most other facilities. My insurance (United Healthcare (AARP) Medicare Advantage) agreed to cover the fees less the usual co-pays and deductibles.
I was pleasantly surprised by the professionalism and objectivity displayed by everyone at the Dattoli Institute. They had initially wanted to get right into a bone and full body CT scan series, presumably in preparation for radiation treatment, but when I told them I had had a CTS in preparation for my bladder surgery and that I was most likely going to end up doing AS, they agreed that the CT scans would not be necessary at this time. I was also expecting Dr Sorace to give a lecture discouraging me from AS, but instead, after the examination, he agreed that AS was not unreasonable for me. He assured me that the MRI showed to his satisfaction that there was no lymph gland involvement. During the CDU, they set up an LCD screen for me to view the scan, and they assured me that the small red dot, in the portion of the prostate where it was expected, was the cancer and that no other cancer was indicated. I was able to see the evidence of the TURP in the enlarged hole in the center, and they measured the overall prostate mass, which appears to be only 18 g now, indicating an excellent reaction to the finasteride. They did mention, as with all tests, the assurance of accuracy is not 100 percent, but their confidence was very high.
Dr Sorace recommended regular biopsies, and explained that although they use a CDU in the hospital to guide the biopsy, they would not recommend a reduction in the number of cores needed for assurance of cancer grade. They would do a saturation biopsy, ("template-guided transperineal 3-dimensional mapping 3-DMP") using the CDU to be sure they sample the known cancer. He recommended external beam radiation if I decide to go ahead with treatment. He feels that there would be a slight curative advantage to adding seeds as well, but in my case, the possibility of urinary distress might offset the benefit.
So at the moment I'm in Active Surveillance. Dattoli's opinion that the tumor is still small and low risk makes me feel better, but the more I read, the more I realize there is no sure way to know that the risk is really low and is going to stay that way. In Scardoni's chapter on AS, he points out that the longer your cancer remains low risk during AS, the more risk you have, not less. I am also realizing how complicated the decision making process is and the more I learn, the more I realize there is a fine line between being a well informed patient, and one who is trying to become a really amateurish self-doctor. Still, the advancements in diagnosing, tracking progress, and treating prostate cancer have been amazing, and there is every reason to believe this progress will continue. I believe that every month I wait there is a greater chance that better testing, imaging, and treatment will be available. I plan to wait a few months, and re-evaluate imaging and other tests and treatments, but I have to say I am really leaning towards getting IGRT sooner rather than later. Even the best of clinical trials seem to be flawed or irrelevant in ways that make it difficult to make a reliable judgment of my cancer development to my satisfaction. A good book about just the trials would be helpful, or at least a good report highlighting the strengths, weaknesses and the consensus of the significance of the outcomes. I am not aware of anything like that, and I don't feel qualified to interpret the trials on my own.
Other books I have found useful:
Your Medical Mind - Jerome Groopman, MD & Pamela Hartzband, MD
This book presents a few case histories of prostate cancer survivors as well as some of other high-risk diseases; how the patients reached treatment decisions and what their satisfaction level was, but its value is in describing and helping you develop thought processes and ways to look at facts and figures to reach a decision you will be able to live with. Written by two MDs with many years experience and research in patient decision-making and the consequences.
Johns Hopkins Cancer Outlook Report - 2012
This is a 56 page report available on-line as a download for $50.00. In my opinion, it is overpriced, but contains authoritative information from leading doctors in the field. I felt it at least provided reliable verification of information available from others.
I have known cancer survivors who have had a new awakening to enjoying each day and every simple pleasure that comes their way. I now know first hand what that is about, and I think that should be the most important goal for all of us.
Good health to all,
Homer Paul
Homer Paul Update, July 2013:
During my assessment by Dr Sorace at Dattoli in Oct 2012, they had taken a PSA assayed in their own laboratory which showed 1.16, but since all my other PSA tests have been assayed by LabCorp of Florida or NIH, I would assume the Dattoli test does not actually indicate an increase over the September test.
In February, 2013 my PSA was 0.9 as assayed by Labcorp.
March 2013:
Dr Bilik, my urologist performed another systoscopy which still showed no recurrence of bladder cancer.
At that time, I ran across a paper delivered by Dr Peter Choyke (head of radiology at the National Cancer Institute, National Institutes of Health) at the Genitourinary Symposium in Orlando, FL, in February, 2013. He told of a technique he calls MRI/US fusion biopsy in which he merges the images from an MRI with the ultrasound used in performing the biopsy in order to take cores from areas that are the most likely to be cancerous, as well as enabling repeatability in subsequent biopsies. He feels this will give a more accurate biopsy with a lower number of samples. He also wrote of a proposed regimen using MRI for following AS patients. http://gucasym.asco.org/sites/gucasym.org/files/GU%202013%20Proceedings%20cover%20to%20cover%20lores_0.pdf
Dr. Choyke also served on a panel of the European Society of Urogenital Radiology (ESUR) which formulated best practices for prostate MRI.
I phoned him, and he graciously agreed to do a 3T MRI using state-of-art techniques at the ClinicalCenter in BethesdaMD. I asked to have a biopsy as described in his paper and he referred me to the Urology Department for the biopsy scheduling but they told me scheduling a biopsy would not be possible for several months. After some discussion with Dr Choyke, we agreed that I would come in for the MRI, and he would get me into a biopsy if the MRI showed cause for concern.
May 2013:
I had the 3T MRI at Bethesda which included an endorectal coil, T1, T2, and diffusion weighting, MR spectroscopy, Magnevist IV, and axial T1 MR images of the abdomen. I also received a thorough exam, a DRE, and a variety of blood tests including PSA. Unfortunately, Dr Choyke had to leave town and was not able to meet with me. We remained in the area until he returned and he sent me a message saying "We reviewed your MRI study of the prostate and did not see any worrisome lesions. I don't think there is any urgency for another biopsy at this time." When I asked what my strategy should be for having a biopsy in the future, he said that he is sending all records to my urologist at home, and that it would be up to him to decide on future tests and treatment. There was no charge for any services I received at NIH.
The MRI report stated that a lesion in the right mid-base peripheral zone was positive on various tests, "making it moderately likely for prostate cancer." They measured the largest dimension of the tumor as 0.46 cm.
(My original biopsy in Feb 2012 identified the adenocarcinoma as being in the right medial mid, which agrees roughly with this MRI and the findings by Dattoli following their MRI and CDU last October. My prostate gland is now "small in size" - 12.4 cc measured at MRI, and PSA density is now .062. This seems remarkable in view of the fact that the size was 45 cc just a year before. My PSA was 0.77.
June 2013:
Upon returning to Florida I met with my urologist after he received the records from Dr. Choyke. My urologist is satisfied for me to wait 6 months to a year to have a second biopsy. He said that he could perform it or I could have it done in conjunction with another MRI at Bethesda. He did not care to comment on the results of the MRI, and did not view the CD ROMS of the MRI sent to him. I asked him if there was a downside to my prostate being shrunk down to the very small size of 12.4 cc, and he said that was fine. All things being equal, I would imagine that this would result in a very high PSA density - in other words, the gland is getting smaller, but not the cancer. I would like to find out more about this phenomenon.
I am considering either requesting a consultation with a urologist or oncologist at NIH, or finding a doctor here in Florida who would interpret all test results and imaging, and give me more guidance as to an overall strategy, as well as possible dietary advice. I plan to have another MRI at Bethesda early 2014, along with a "MRI fusion" biopsy.
I am currently in the process of reading Dr. Myer's dietary book and also the World Cancer Research Fund Second Expert Report. (http://www.dietandcancerreport.org/expert_report/recommendations/index.php)
So far, I am not satisfied that there has been shown a clear cause-effect relationship on prostate cancer in the dietary and especially nutritional supplement studies, but I have cut my intake of red meat, increased the use of olive oil, and increased my intake of fish and the suggested nuts and vegetables. Dr Myer's book seems to really aim toward a reduction of cardiovascular disease and colon cancer rather than a conclusive benefit for prostate cancer. I am surprised that the vitamin E fiasco (See SELECT Trial, [JAMA] October 12, 2011, Vol 306, No. 14) and now the Omega 3 in fish oil supplements question is not being addressed more openly by these and other authorities. (See also "The Cure Du Joure")
I am feeling more at ease with AS now, and with some really good professional support, I hope to continue for many years without treatment.
Good health to all,
Homer Paul
As I write this I received the sad, sad, news of Terry…..I can only dream of passing on a monumental humanitarian legacy such as he did. Love and support to all his loved ones….
I had intended to send an update in October 2013, but things started happening, and it seemed like I would have encouraging news in just a few more days. But things kept happening, so…..
October 2013
Experiencing greatly reduced sex drive, so urologist took me off Finasteride, restarted Tamsulosin, and ordered total and free Testosterone blood tests. I watched with interest Snuffy Myer's recent videos on adjusting dosage of Avodart and Finasteride by monitoring DHT, and I am wondering if I should have had a lower dosage of Finasteride. My only measurement of DHT was over a year ago, at which time it was 5.3 after 6 months on Finasteride 5mg/day . This is approximately the DHT level that Snuffy targets with his Finasteride/Avodart dosing. Before my reaction to Finasteride occurred, I had been ignoring the medication and hormonal aspects of PCa treatment. I have just now begun reading up - and find it is possibly the most complex and crucial piece of this puzzle. I would now recommend anyone taking Finasteride or Avodart have frequent DHT tests as Snuffy recommends, and back off the meds when the DHT level approaches a reading of 5.
Another interesting side note in one of Snuffy's Avodart videos is : (an apparent answer to my question of the significance of shrinking the prostate gland) - He says: "In general, the tumor just stays the same and the gland just shrinks around the cancer." But I have never seen where he addresses such a profound shrinkage as I have experienced. (Reducing in mass from 45g to 12g in a year) This surely brings the tumor closer to the surface of the capsule, which, it seems to me, can't be a good thing. I'm surprised there isn't research about this aspect, possibly leading to determining an optimum size for the prostate gland to be targeted.
I set up an appointment with NIH in Bethesda for MRI and fusion guided biopsy for May 2014. I'm still a little hazy on best way to coordinate the various services with NIH. Dr Choyke (MRI radiology) was willing to schedule me for a MRI without regard for the possibility of a biopsy. When I expressed a desire to have a biopsy, he referred me to the urology department there to set that up, and then scheduled the MRI the day before that. The NIH urologist said I really should have had the biopsy shortly after the MRI last year but Dr Choyke had deferred that decision to my urologist in Florida. My urologist had read Dr. Choyke's optimism over the appearance of my MRI to mean that no biopsy would be needed for a year. Since my PSA is remaining low, everyone agrees I should be OK. DRE is still negative.
January 2014
Had systoscopy for bladder cancer which showed there is still no evidence of disease returning there. Libido is a little better now, but still somewhat unsatisfactory. PSA is now 1.2 which seems fine considering the 2 months without Finasteride.
My testosterone tests came back with "total" T= 238, and "free" FT=5.1, both slightly below the normal range. My urologist wants me to wait a little longer to see if discontinuing the Finasteride will solve the loss of libido before prescribing additional medications. I told him about Snuffy's apparent success with dosing Finasteride by measuring DHT and he agreed to follow that regimen for me, but wants to wait a little longer before resuming any dosage of Finasteride or trying any other medication.
My urologist here in Florida now has a 3T MRI and does fusion guided biopsies, so I will rethink having these done at NIH in the future. I will also continue to study the literature to look for justification to discontinue biopsies all together. My urologist is disappointed with his MRI scans, says he frequently gets false positives. The scan shows a tumor and the biopsy is negative. NIH just completed a small study to see if they could grade PCa using only MRI and PSA data. So far the results don't look all that impressive, but I would want to look at just the cases with very low PSA to see if that would at least give a good indication of when a Gleason 6 becomes more aggressive. Should I decide to postpone biopsies indefinitely, I would definitely seek regular CDU in addition to MRI. I asked Dr Choyke if they did CDU as well as MRI, or if they would evaluate the CDU I received at Dattoli. He said no to both.
March 2014
I had not read "Invasion of the Prostate Snatchers" because of the whimsical title (and the obviously arrogant subtitle - ("NO MORE UNNECESSARY BIOPSIES, RADICAL TREATMENT OR LOSS OF SEXUAL POTENCY") - and because of the reviews which cautioned against taking the author's advice without further reading. Now that I have read it, I believe it is a valuable resource, although I was put off by the author's experimentation with unproven illogical alternative treatments; the way he glosses over the catastrophic results of some men who would be "refuseniks"; and, most important, his emphasis on the "worst case scenario" of each of the treatments he investigated. Still, I wish I had read it sooner, at least for the better understanding of the emotional process a cancer patient goes through, and the authors' very hard look at probable benefits vs the downside of the various treatments. The controversial idea of using androgen deprivation therapy ("ADT", also called "TIP" by the authors) as a primary treatment for low and medium risk cancer certainly sounds interesting, and they have, as I understand it, had at least 10 years of experience with it to back it up. I notice, however, a study done at Rutgers that shows no benefit in using ADT for primary treatment, and sites the harmful side effects as making it unsuitable for elderly patients. (http://www.medscape.com/viewarticle/828204?src=wnl_edit_tpal&uac=187445PT)
His description of his feelings experienced during loss of libido is certainly the most vivid I have seen, and validates my own very mild experience. The authors both disclaim any authority to advise anyone to try the same thing they are doing, but I am uncomfortable with their implied claim to know more than most mainstream physicians. His disclaimer on page 7 should be in bold caps, and should say "I was extremely foolhardy to ignore a palpable lump in my prostate gland for 9 years and wait until my PSA was 18.3 to get treatment." I feel the subtitle should read - "One Man's Controversial Approach to Living with Prostate Cancer" instead of the one used, which essentially states that they have a better solution for diagnosing and treating prostate cancer than does mainstream medical science.
March 28, 2014
My PSA is 1.6, which would be a fast rise if not for the withdrawal of Finasteride in October, 2013. Sex drive still improving slightly, but not nearly back to prior 2013. We have satisfactory sex, but infrequently, and I very seldom have the endurance for full-on coitus.
May 2014
Returned to NIH, Bethesda, MD, for MRI and biopsy. They now have discontinued the use of an endorectal coil, and instead are using a flat coil pack strapped to the abdomen. This is more comfortable, of course, and they say is just as effective as the endorectal coil with the 3T MRI.
Apparently I had been enrolled in a very general MRI study until now, and I have now signed permission to be enrolled in two separate studies - one involving the study of genetic aspects of prostate cancer; and the other for the MRI fusion biopsies.
Dr. Peter Pinto performed the biopsy under a triple local anesthesia, and the pain of the needles was much less than that experienced with my original biopsy 2 years ago in Florida. I was placed in a position to view the screen being used for the procedure, but except for some superimposed graphics which seem to show the outline of the gland and the site of the suspicious tissue, I couldn't make anything of it. I could clearly see the needle being inserted, however. They mentioned the tremendous advantage of being able to repeat the precise needle placement in future biopsies, and the likelihood that the most significant cancer will be found in the suspicious area.
While on the table, Dr. Pinto discussed my past treatment and offered his opinion agreeing with my decision to go with AS instead of radiation. He said the MRI shows that my cancer is still very small, and, at worst, if my Gleason score is upgraded, he would recommend my having focal laser ablation of only a very small area. He also voiced his unequivocal opinion that Finasteride probably causes prostate cancer to become more aggressive, and thought I would have done just as well without it, whether or not I was going to have IMRT.
My PSA is now 1.82, and Gleason score from the biopsy is 3 + 4 = 7. My prostate gland has increased in mass from 12 gm last year to 16 gm.
Two weeks after the biopsy, an NIH doctor, Dr James Farrell called me to discuss the results. He said that the MRI shows no increase in size of the main tumor since last year, and that it is still confined to one area in the right base, but my Gleason score is now 3 + 4 = 7 - still low volume, and not a cause for immediate concern. He didn't seem to share Dr Pinto's confidence in the MRI accurately measuring the size of the tumor, although he said that the biopsy is consistent with the area of suspicion on the MRI.
I asked him about laser focal ablation and he said they are not running a laser program right now, but did not have a problem with my having that done at another institution if I wanted it. He offered to have me come back to NIH soon to discuss treatment (or non-treatment) options, but that if I was comfortable with my urologist here in Florida, he could discuss it with me.
So my PSA is now 1.82, and the Gleason is now 3 + 4 = 7. Not wonderful news, but since it has been two years since my original biopsy, and I had been hearing stories of guys who had aggressive cancer with low PSA, I was a little concerned that it might have been worse. This means I will pull out all the stops on a cancer diet, and really buckle down to re-investigate all therapies.
June 2014
Visited my local urologist, Dr Bilik, but results have not arrived to him. Based on my notes from the NIH telephone converstation, he agrees continued AS is reasonable. My T has now increased to 283, and DHT is 25. Sex drive is only slightly better now than before withdrawing Finasteride. With PCa knocking on the door, he says it would not be a good idea trying to raise either of these to try to regain sex drive. He disagrees with Dr Pinto as to any harm in taking Finasteride, but also doesn't think Snuffy's protocol of using it to depress DHT does any good. So for now. I'll leave it off until I re-think the Finasteride/Avodart studies. I told him I thought an erection enhancing drug might help, so he prescribed Cialis.
I emailed Dr Pinto at NIH to see if there is any chance I might get Laser ablation there. Dr George from NIH called to talk about my request. He furnished more details about my MRI/biopsy and says besides a small amount of 3+4 at Rt Base which could be treated with laser, there is a very small amount of 3+4 in the Right Mid, which the MRI missed. (10% of one core) He says that since that is a separate area, and especially since the MRI is not detecting it, I would not be a candidate for laser ablation at NIH. He recommends continuing AS and getting a repeat MRI and possibly another biopsy in one year.
June 20, 2014
This Cialis is great stuff! I had not realized that my loss of libido was so dependent on the mild ED I was experiencing - I had thought it was the other way around. It totally restored my confidence and performance - I feel 10 years younger! Turns out Cialis also helps with BPH, so that should be another plus, as my gland is now increasing in size since withdrawing Finasteride last October. I had been taking a mild blood pressure med, and found I had to discontinue that to keep from getting dizzy when exercising. The Cialis is doing a good job of lowering my BP by itself.
August 2014
Treatment options have been on my mind a lot now since the realization of my increased Gleason score. Getting back to reading YANA journeys is comforting. I filtered the stories to read only the ones with the same Gleason as mine. I especially found the one written by "John" in BC, Canada to be very enlightening. (http://www.yananow.org/display_story.php?id=1077) Among his many comments that were helpful to me, I think he has made a very insightful evaluation of some of the many statistics that I have found difficult to make sense of. But I disagree with his decision to stop monitoring his cancer, and planning to never get treatment.
PSA came in today still holding at 1.8. That's good news, takes some of the pressure off, although my urologist, who now is urging me to get treatment, left me with a cheerful reminder, "Don't trust the PSA, it might not spike until it is too late!" Still, it is an important piece of the puzzle, and better stable than climbing.
Since having the bout with bladder cancer, I am very concerned about radiation causing a secondary cancer. Radical prostatectomy is starting to look better to me. Mentor John Vig laid out the rationale for RP as succinctly as anyone could - it does have some advantages; and Snuffy recommends it for someone in my position. For robotic RP, my urologist recommended Dr Patel, in Celebration, FL. If I come back around to photon IMRT, I like Dattoli the best so far, and if I go for proton, it will probably be University of Florida in Jacksonville. I am just beginning to investigate Cyber Knife, and made an appointment with a doctor at Tampa Bay Radiation Oncology Center to discuss it. Since NIH suggested laser, I am talking to centers who do that, but am thinking more and more that focal therapy is not for me. I am really leaning towards proton, but am mystified how there can be so many happy proton patients when the stats seem clear that there is no advantage over photon IMRT. Any insight on that would be especially appreciated, as well as any general support in my decision making process.
Thanks and best wishes to all of you!
Homer Paul
December 2014:
Realizing that many of you may want the short version of my decision process, I will sum it up here:
After nearly 3 years of Active Surveillance, and after consulting with 8 different doctors, all recommending different treatments, and after spending many waking hours reading studies of each type of treatment, I have enrolled in proton beam therapy at the University of Florida Proton Institute, in Jacksonville, Florida. As I write this, I have just completed the 39 treatments of my protocol. My doctors and the support staff here are extremely competent and this is an altogether excellent facility, where your entire body and mind are cared for. I was surrounded by caring professionals and hundreds of other cancer patients who also felt this was the best treatment they could find. I am not experiencing any side effects, although many of my fellow patients are experiencing moderate urinary restrictions, excessive frequency and urgency, burning, and tiredness. I credit my doctors in Sarasota with correctly accessing my need for a TURP and a course of Finasteride three years ago as preparation for any type of radiation treatment. (Although, note below, confirmation of my doctor's earlier warning that a TURP will make a prostatectomy practically impossible.) I practiced Keegle exercises for several months before starting treatment which also may have helped. I will continue making updates to this report every 6 months to let you all know how it goes.
For those who would like to read the details, more than you probably would care to know about it follows:
September 2014
I jumped into the final phase of my treatment selection process. Since Dr. Pinto at NIH had given me great hope of having laser treatment, and my urologist here in Florida feels laser has great promise, (although not ready for prime time) I tried to set up consultations with some of the centers where that is done. One was here in Sarasota, Florida, but it was just getting set up, and I did not feel good about being their first patient. I applied at Emory U in Atlanta for laser treatment, whose doctors said my NIH MRI images are not of good enough quality to work with. I would have to come to Atlanta and have them do a new MRI before they would say I might be a candidate for FLA (Focal Laser Ablation). Texas U has been recommended to me as one of the best FLA centers, but, in either case, I would have to make a long journey to start the diagnostics over again for an uncertain outcome. The same with MSK in NY.
In any event, I am getting soured on the idea of any of the focal therapies after looking at the moderately high probability of the cancer having at least a microscopic start out past the usual margins, as well as knowing that not all of my cancer is showing up in an MRI. I set up a consultation with Cleveland Clinic to discuss cryo ablation, but could not find much encouragement from anyone on that, so cancelled the appointment.
I next set up an appointment with Dr. Vipul Patel, noted robotic prostate surgeon at Florida Hospital, Global Robotics Institute, in Celebration, Florida. Although my urologist did not recommend surgery for me, I still wanted to avoid radiation if it made sense at all.
Dr. Patel and his assistant both examined me, and said that since I had had a laser TURP, the chances of sparing my erectile nerves were somewhat less than otherwise. They explained that since the laser would have fused the nerve bundle to the adjacent tissue, it would be a little like peeling off wet tissue paper (my erectile nerve bundle and urethra being the wet tissue paper). However, Dr. Patel said he had done it many times with good success. The assistant had said it might reduce my chances of potency to 60 - 70%. Even that would be considered optimistic according to most studies.
Dr. Patel said he believes that any kind of radiation would greatly increase my chances of having a recurrence of my bladder cancer history. He said with my bladder situation, he would rather see me do nothing than get cyber knife. And he wouldn't be opposed to me doing AS longer. More AS sounds tempting, but now that I have thought more about the stats that show a much better treatment success rate in low risk cancers, and less need of more radical treatment than after it becomes more aggressive, I would like to do something now if it makes sense at all.
I next paid a visit to Dr. Steel, a well-known Cyberknife man here in the SW Florida area, at the Cyberknife Center of Tampa Bay (Tampa Bay Radiation Oncology). Although he does Cyberknife, and feels it has a good theoretical advantage over other modes, he feels better about doing EBRT plus seeds for me due to their high marks on the Grimm study. (http://prostate-cancer.org/PDFs/Is14-2_p3-11.pdf)
Dr. Steel patiently answered all my questions about his recommended procedure and a host of others as well. He is a strong advocate of being guided by the Grimm studies, and showed where each of the treatment modes I was interested in did in those studies. The study shows an impressive curative advantage for EBRT plus seeds, but does not look at side effects of any of them.
I told him I was especially concerned about the likelihood that radiation would cause secondary cancers, to which he confidently replied that the large studies showed no evidence that this was happening. He said that only one relatively small study done at the University of Miami showed secondary cancers could be caused by radiation therapy. He explained the difference between high intensity radiation used in therapy, and low intensity, such as victims of atom bomb residual radiation experienced. He said that short term high intensity radiation destroys cancer, and long term low intensity radiation tends to cause cancer.
He pointed out the poor showing of cryo ablation in the Grimm study, and mentioned the high impotency rate of that mode. He said that the incontinence rate of cryo is also high, the opposite of other sources I have seen. He also pointed out that the 10 year recurrence rate with radical prostatectomy is also around 50%, as well as EBRT without seeds, as shown by that study. I ultimately discarded Cyberknife due to the extremely high dose per session, which some researchers think could lead to a greater occurrence of late side effects. (Again, thinking of my latent bladder cancer)
Finally, I focused on proton beam therapy. I requested information from eight of the US proton facilities, all of which responded. University of Florida Health Proton Therapy Institute in Jacksonville, Florida made an enthusiastic and friendly response, which included 2 books written by proton patients - one written by Bob Marckini (who later founded the "Brotherhood of the Balloon", a proton therapy info and support society). These books, and a third one obtained later, are filled with unbridled optimism as to the patient outcomes from proton therapy. They are all written by patients with no medical training, and all of which give you the impression that any treatment failure or side effects are extremely rare. They do mention the actual statistics from studies, which show the cure rate of proton is slightly higher, and the side effects somewhat lower than with other treatments, but it is still puzzling to me why there is such a wide discrepancy between proton's mediocre showing in many studies on one hand, and the large number of happy patients who have undergone proton beam therapy with excellent results on the other. Of the 74 YANANOW.org website contributors who have had proton, there are three cases of a biological recurrence, (only one of the failures was in a low risk category) and their incidence of side effects was remarkably low.
I read a number of studies comparing proton treatment with other modes, some of which support the idea that proton therapy is just not worth the high cost plus the inconvenience of traveling to a distant center. Then I read a response posted on the UFPTI website which explains at least part of the disparity. A large part of the confusion stems from the fact that it is considered normal and not particularly troublesome for many proton patients to have some rectal bleeding for a short time after treatment, caused by the small area of damaged normal tissue being restored by the body. This is picked up on some studies as a significant side effect, even though the rectum is, in most cases, in much better condition than when X-ray treatment is used. The largest study that concludes proton causes excessive trauma is based solely on Medicare billing records.
Still another report, done at Harvard, is not a source of confidence in proton therapy. (http://www.semradonc.com/article/S1053-4296(12)00112-9/abstract) I believe this report was the main reason Jon Nowlin (See YANANOW.org) chose Cyberknife instead of Proton. It contains diagrams that seem to that show proton treatment actually delivers significantly more radiation to the rectum and bladder, as well as to the "femoral heads"- the flesh and bones in the hips. Later, when I showed these diagrams to my doctor at UFPTI he said that they now control the radiation pattern much better than the ones shown in the Harvard diagram, and that in any event, the diagram was deceptive as to the exact placement of the rectum and bladder.
After reading the new report from UFPTI which shows a 100% five year cancer free rate for men in my risk group and very low damage to healthy tissue in the rectum, urethra, and bladder, I began to feel more in favor of proton treatment. However, this study was extremely small - only 211 total patients, so I was still looking for some reinforcement of the findings. (http://www.redjournal.org/article/S0360-3016(13)03310-5/fulltext)
A study done by James Metz, MD at the Abramson Cancer Center of the University of Pennsylvania (http://www.oncolink.org/treatment/article.cfm?c=&id=211) indicates a much lower incidence of side effects for proton than with any other treatment. I don't know why this report is not more widely circulated. On the downside, this and other reports mention that there is no means of tracking exactly how much of the proton beam Bragg peak will actually hit the targeted area, although they say if sufficient compensation is used with accurate treatment design, this is not a significant concern. Another concern is that stray radiation from a "neutron scatter" effect from proton beam is possible, which increases the amount of radiation to healthy tissue (except with pencil beam delivery). Again, the amount of neutron radiation in actual practice has been shown to be quite small, and has not been shown to be a problem.
I noted the potential advantages of the somewhat newer proton beam technique called "pencil beam", which is said to allow better placement of the dose, but which may not provide as wide of coverage as conventional delivery. I was told that UFPTI does not have pencil beam technology, and that they do not believe pencil beam has any advantage in treating prostate cancer at this time. (Later, in an email, a fellow YANA mentor told me of having had proton at MD Anderson where he was told that although they have pencil beam there, they use it only on higher risk cancers. He did not qualify for pencil beam, was given the standard proton treatment, and has had a very good outcome.)
I discarded the idea of consulting with pencil beam proton facilities since there have been no studies which show superiority, and since pencil beam is not available to me within a convenient distance. I see in the literature that pencil beam has the potential of being a quantum improvement over the conventional method, but being fairly new, I wonder if it is too early to go a great distance to try it? I'm thinking it might be better to use older technology with a team that is good at it, than be on-the-job training for a newer technique. At least one paper I have read agrees with UFPTI and MDA that pencil beam may not have any advantage for prostate cancer.
A doctor at UFPTI referred me to some other studies, most of them easily accessed via the www.pubmed.com site. The best one I found was not overly optimistic about outcomes of proton therapy, but it ultimately helped me make my decision to have proton. It was "Proton Beam Therapy for Localized Prostate Cancer 101: Basics, Controversies, and Facts" by Eric S Wisenbaugh, et al. (Search "prostate proton therapy" on the pubmed site)
This paper included a "Dose Distribution" graph, which clearly shows the characteristics of the "Spread-Out Bragg Peak", alluded to often by both proponents and critics of proton. This seems to explain the heavy dose imparted to the hip area shown in dosimetry plans shown in this and several other papers. I had noticed the concern some researchers voiced about possible late trauma to the hips, especially in bones, in regard to this unavoidable rather heavy radiation dosage to the hip area. (See discussion I initiated in YANANOW forum - "LATE TRAUMA TO HIPS WITH PROTON THERAPY?".) As you will see there in references to studies and actual experiences of several of our members, there doesn't appear to be much cause for concern. A small five-year study run by UFPTI showed that there is no more hip trauma than in an untreated population, and a mentor with the protonbob.com website responded that they are not aware of any trend of hip trauma within their thousands of members.
The Dose Distribution graph also made me feel that the dosimetry plans of modern photon IMRT treatment which sometimes appear to show superior control of that mode were deceptive in that they are not 3D representations, and probably don't show a large amount of radiation given to the rectum which a well-executed proton treatment would avoid. Also, it appears that the healthy tissue usually recovers from proton radiation in a reasonable amount of time.
Finally, the Bragg Peak graph found in the Wisenbaugh study seems to show that the prostate gland would receive a higher percentage of the total dose than with photon, therefore potentially doing a more complete job of killing cancer cells.
After looking at the credentials of the people at UFPTI, and looking at many excellent recommendations for them, and, since they are the closest to my home, I decided to go to them for a consultation.
The entire staff and organization is as professional and friendly as I had been told. The examination and consultation was a very positive experience. The doctors here did not try to oversell me on the potential benefits of proton treatment. They did tell me that they see only 1% side effects with proton, rather than the 3% that is experienced from photon EBRT and seeds. Certainly the disclosure forms you sign do not make any promises, stating possible side effects occurrence rates worse than the average statistics of any radiation treatment anywhere. There are no guarantees with this disease, but I believe this treatment will provide my best chance of becoming disease free with the least detriment to my quality of life.
My Retrospective of Active Surveillance
Since the diagnosis of my prostate cancer, I have sought out and read every study of treatment outcomes I could find. Besides helping to make this difficult decision, this review of the studies has given me a little more critical look at active surveillance. When I went into AS, I looked mostly at the stats showing that, on the average, there is no treatment that offers a definite benefit in longevity, and possibly even successful later treatment, but I had overlooked the difference in treatment outcomes of men with GS6 vs GS7 and higher. It appears that most of the patients with higher Gleason scores required more aggressive treatment and have a greatly higher recurrence rate, even though the cancer may be controllable. The more aggressive cancer grades more frequently need androgen deprivation therapy (ADT) in addition to whatever else they get, and I now realize that would be no cakewalk. One friend recovering from a failed radical prostatectomy stopped his ADT after 6 months, saying he would rather die than suffer the side effects of having no testosterone.
On the other hand, active surveillance has given me 2 years with almost zero side effects, has brought me the availability of better studies and technology, and possibly the benefit of more experienced physicians.
There is no perfect, risk free treatment for prostate cancer. Despite the lingering questions and drawbacks to receiving treatment, I think my chances for a successful outcome from treatment at this time are the best that will be available. I think the chances are very good that I will have an excellent 10 year outcome in remaining disease free and being free of serious side effects with proton treatment.
A side note about Cialis:
My urologist believes that the generic Cialis (Tadalafil) is just as good as the brand name. He also has no problem with generic Cialis being produced only in India and not being sold in the USA at the present time. The websites I found which will provide generic Cialis have all had a storm of frightening reviews - many cases of slow delivery, wrong meds, and sometimes switching prices - often with no successful recourse. I mentioned this to my urologist, and he suggested a brick-and-mortar store nearby that will order it from overseas for you at the same price as the on-line stores. (about 1/3 of what pharmacies charge for the brand name) Telephoning several discount pharmacies listed in the yellow pages and on line located two such offices in my area. It takes about 3 weeks to receive the product from one of these, but I have had no problems.
As I mentioned previously, I have had a good response to Cialis. (Daily 5Mg dose). Besides restoring erections, and in my case libido, it will also help ward off BPH. With most prostate cancer treatments physicians will recommend its continued use during and after treatment, and they tell me here at UFPTI that sex is a "use it or lose it" proposition at this stage. My doctor recommends having sex as often as comfortable to help avoid ED and possibly loss of libido. There is also some evidence that good nutrition, controlling one's weight, and getting aerobic exercise will help restore testosterone and overall sexual performance.
I have never tried Viagra, so cannot comment on that.
My, how the time flies! My one-year checkup was done March 8, 2016 at the University of Florida Proton Treatment Center, and I am doing great! I scheduled my exams to coincide with special "alumni" dinners and lectures in Jacksonville, meeting up with many of the new friends I made while having my proton treatment.
My PSA is rock steady at 1.0, I have no bleeding, soreness, or any side effects whatsoever. The spots on my hips, which were never pronounced, are now just faint "suntanned" spots. I continue to take daily Cialis for mild ED, and as mentioned before, this also helps to keep blood pressure under control. I continue to take tamsulosin (Flomax) which makes urinary flow a little better, but I skipped it for 3 weeks while having eye surgery, and had no problems (see note about Flomax side effects, below). I have no perceptible difference in urinary, bowel, or sexual functions, than before treatment: all good.
Even though I know that a steady PSA of 1.0 is no cause for concern after radiation treatment, I couldn't help but feel a little envious of others I talked to who have nearly unmeasurable PSAs after treatment. At one of the lectures at the 6 month checkup, my doctor admonished proton patients (and those having other forms of radiation) to not get into contests with other patients who have lower PSAs, especially if you are advanced in age. He reminded us that even if the treatment is completely successful, we still have a functioning prostate gland, and even in those with no cancer or treatment, a moderate, steady, PSA number is no cause for concern.
I am adhering as closely as I can to Dr. Snuffy Myers' cancer diet, although I must admit, I am eating much more red meat, dairy and corn products than he would like to see. Myers' cancer diet is mainly deep-sea fish, poultry, cruciferous vegetables, and tomato-based dishes, with moderate amounts of starch, and only rarely, a little grass-fed red meat. I have started taking a supplement containing sulforaphane which was recommended by a nutrition counselor who spoke at a local Ustoo cancer support group meeting. She said it was developed by Johns Hopkins, and seems to deliver a consistent supply of the beneficial substance found in broccoli thought to reduce growth of cancer. My take on reading the ads for various products containing sulforaphane was that a product called "Broccomax" was the best, but, of course, these things are not FDA approved or clinically tested very well, so the ingredients and track records are hard to pin down.
I continue to do a brisk one-mile walk every day, and enjoy all the things a guy would want to do at my age. I will continue to have PSAs every 6 months, and annual DREs. I will continue to post at least annually.
A note about side effects of tamsulosin (Flomax): I was unaware, and it is not widely discussed by doctors, of a well-documented side effect of this drug. In most men, it will permanently reduce the size of the pupils and make the eye muscles "floppy" making cataract surgery difficult. I was told that laser eye surgery might be impossible for me, so I elected to have conventional surgery (via scalpel) rather than have laser attempted and having to convert while on the table. I was told that discontinuing the Flomax prior to having the surgery would not help, but I decided to stop taking it for the 3 weeks before my second cataract was removed, and the doctor said the second was somewhat easier than the first. In retrospect, I would probably not have refused Flomax even if I had been told this beforehand, as it greatly improves bladder health when needed, but I might have looked a little closer at other options.
Low PSAs to everyone!
Homer Paul
On 2/10/2017, I elected to have a phone interview with my nurse at UFPTI, Jacksonville, for my two-year check-up, rather than make the 200 plus mile overnight trip to Jacksonville. They sent guidelines to my local urologist for doing future cystoscopies and DREs. I miss getting together with my medical team and all the great friends we made while under treatment there, but my wife and I have a very full life of travel and hobbies with old friends and family.
My PSA is still 1.0, which, as I pointed out in my previous post, is considered "no evidence of disease" with any type of radiation treatment. I have discontinued Flomax (tamsulosin), as I had noticed very little effect from it when I stopped it for a few weeks to see if that would help with cataract surgery. (it may have) I have increased my daily dose of Cialis to 10 mg per day. Libido seems a little off, but hey, I'm not 20 years old any more! I still feel fine, am very active, and have zero side effects from the proton treatment.
Low PSAs to everyone!
- Homer Paul
Now, three years out from Proton treatment, my PSA is still gradually going down. On January 19, 2018, it was down to 0.5, all is good! Still no side effect. I reduced my Cialis back to 5mg daily, am more comfortable with that, and urologist cautions that 10mg dose may be associated with greater incidence of skin cancer. I attended a lecture by a representative of the Proton Center, and I notice that they are now confirming studies that indicate proton treatment is associated with a lower rate of secondary cancers than with other types of radiation treatment. Also, they are now improving the technique to reduce the incidence of rectal side effects, which have been about the same as with other radiation treatments. I have not experienced any side effects of any kind. On my annual bladder checkup, I was found to have no evidence of cancer there.
Low PSAs to all, Homer Paul
Now, four years out from Proton treatment. After a steady decline down to 0.5 in Jan 2018, I made the mistake of having it taken at a different lab in July 2018, which showed it was down to 0.39. Yeah, celebrate, right? But now I went back to original lab, and that says 0.46. up .07 from the previous, but still down from Jan 2018. This is much ado about nothing, but when you're on a roll, you hate for it to level off. Have to keep in mind, that even if the treatment is completely successful, with proton treatment, we still have a functioning prostate gland, and even in those with no cancer or treatment, a moderate, steady, PSA number is no cause for concern.
Low PSA's to all!
Homer Paul
Had PSA taken at original lab in January. Slightly lower, at 0.5. Still no side effects, feeling fine. This is five year anniversary of my proton treatment. I'm still very satisfied with my decision and the care I received at University of Florida Proton Center in Jacksonville, Florida. I'll be having PSA done only annually intstead of at six-month intervals from now on.
Good Health and Low PSA's to All!
Homer Paul
Had PSA taken at original lab in February. Still 0.5 and still no side effects, feeling fine. This is six year anniversary of my proton treatment. I'm still very satisfied with my decision and the care I received at University of Florida Proton Center in Jacksonville, Florida. I'll continue having PSA done annually.
Having cystoscopy done to monitor for recurrence of bladder cancer every two years. February cystoscopy was negative.
Good Health and Low PSA's to All!
Homer Paul
How the time flies! Missed 2022 report, October 2022, PSA was down to 0.3 Yea! Then in September 2023 had PSA taken at original lab and it was still 0.3! I still have no side effects, feeling fine. This is eight year anniversary of my proton treatment. I'm still very satisfied with my decision and the care I received at University of Florida Proton Center in Jacksonville, Florida. I'll continue having PSA done annually.
Having cystoscopy done to monitor for recurrence of bladder cancer every two years. September 2023 cystoscopy was negative.
My Testosterone is fairly low, 195, and I believe that I would have more energy and alertness if I had it boosted. My Primary Care Doctor thinks it would cause cancer to come back (I disagree), and my Urologist thinks that there would be a moderate risk of cardiac problems. (I think that is correct.) Since I have more energy than most geezers (I'm 80 this year) and my sex drive is still satisfactory, I think I'll forgo getting T boosted.
Good Health and Low PSA's to All!
Homer Paul
Homer's e-mail address is: homerresearch AT aol.com (replace "AT" with "@")
