I have been on AS for just about 4 1/2 years. It has been somewhat of a bumpy ride. I say this because, in the beginning, my wife and I decided that we wouldn't take unnecessary chances. Therefore, I would follow the intent of AS, which was to monitor my cancer for progression and seek treatment when there was possible evidence of it. I haven't exactly done that however for reasons that I will explain below. I prefer to think that it is because I've become more knowledgeable and wiser about PCa than I was back then instead of it being a case of having my head so far up my butt that I could examine my own prostate.
My PCa story began on May 8th, 2007 with a prostatitis diagnosis. I had a bad case of the chills normally associated with the flu, but had no other flu-like symptoms. My family physician said that it sounded like prostatitis and had my PSA checked. The results showed a level of 46.8. I was given antibiotics, but when my PSA dropped no lower than 5, my Dr. set up an appointment for an examination with the urologist down the hall, which led to a biopsy on August 6th. My DRE was labeled as "unremarkable" (which has always been the case), but the biopsy results showed cancer in 30% of one of six cores. My Gleason score was a 6 and my clinical stage was T1c.
My experience with this urologist who diagnosed my cancer was all negative and taught me early on not to blindly trust what my "specialist" had to say. What happened was this: While I felt numb after receiving the diagnosis, I still kept my wits about me enough to tell the Dr. that I didn't want anything done to me that would adversely affect my sex life. Disregarding what I said, the Dr. told me that Gleason 6 was an aggressive cancer and that he would give me an injection of Lupron which would shrink my tumor and give me the opportunity to research treatment options. He had nothing more to say about the shot than that. So, I soon found out the hard way (by experiencing the side effects of the drug) that he had betrayed me by ignoring my wishes and putting me on hormone therapy out of what I can only imagine was either greed or ignorance.
My next step was to begin researching the various treatment options on the Internet. In doing so, I also found information on AS, which I was interested in since I had a real problem with the incontinence and impotence side effects of treatment that I had been reading about. This was because I enjoyed a very satisfying sex life with my multi-orgasmic wife and I did not want to lose that. Plus, I had one vice and that was that I drank an excessive amount of diet Dr. Pepper every day, which meant that I had a problem involving urinary urgency. From what I read, if I did not give the soda up, it would increase the likelihood that I would have long-term incontinence problems. So, I set up an appointment at the Dana-Farber Cancer Institute in Boston to talk about my research and these issues with a surgeon, a radiation oncologist, and a medical oncologist. The radiation oncologist told me that my urgency to urinate would be exascerbated by "RT". The medical oncologist talked to me somewhat about AS, but fell short of recommending it for reasons that I felt had to do with his working relationship with the surgeon, who is Chief of Urology. This surgeon did his best to talk me out of AS and, in the end, an appointment was set for an open radical prostatectomy (RP). I returned home, continued my research, had a heart-to-heart talk with my wife and subsequently canceled the surgery because I felt that, for the time being, AS was the right path for me to take. In the days and months ahead I would find no support among physicians and family for my decision, but I had my research to back me up and that was enough. For the record, one of the key factors in making my decision was a 10 year AS study, the results of which I posted on the YANA forum on January 31, 2012 (which you can find by using the index at the bottom of the page).
MY EXPERIENCE ON AS: Along with deciding on AS, I also decided to retire in case my strategy backfired and cause me to lose my retirement years down the road. I suffer from OCD related anxiety anyway, but after having made these two big decisions, I found myself experiencing a higher than normal level of anxiety to the point where I was feeling a tightness in my chest. Thankfully, this feeling was short-lived and I soon became quite comfortable with my plan. Over the next three years, I did my due diligence by having my PSA checked every six months and a biopsy done annually. For the most part, the results showed that I was on the right path. The exception was that my second biopsy showed cancer in 4 of 18 cores, but I told myself that the finding was acceptable because of the total number of cores involved. This was the first evidence of my deviating from my original intention not to take any unnecessary chances. Six months later, my PSA did something totally unexpected in that it dropped from 3.8 down to 1.5 (and it has basically stayed there with very little fluctuation ever since). The only thing I did differently in my life to account for the change was to make dietary and lifestyle changes, which included 20 lbs of weight loss. While on the surface, this drop seemed like a good thing, there was a possible downside. For one, I had read that for 25% of patients PSA is not a reliable indicator of progression. Also, my research showed that the more aggressive tumors tend to make less PSA. So, while I continued to have my PSA checked at regular intervals, I did not know how much I could count on it (and still don't to this day). This also had the potential of skewing other test results that were based on my PSA score. More specifically, my % free PSA was 25%, my PSA density was 4% and my velocity was a non-factor, but I knew that my "abnormally normal" PSA could make all of these stats irrelevant. This would play a role in my seeking further tests down the road, especially after I got the results of my January 2011 biopsy.
The results of the January 2011 biopsy found that I had cancer in 4 cores (out of 12), all of which were 45% cancerous. My previous two 12 core biopsies had consisted of two cancerous cores that were 5 & 30% cancerous in 2008 and 1 & 15% cancerous in 2010. As a result of this dramatic change, my cancer was once again in the forefront of my thoughts as my comfortable plan seemed to be on the skids. I could no longer dismiss the 4 cores as I had done before, and the 45% findings were very close to not meeting AS guidelines either (in that you should have no core that is more than 50% cancerous). While I knew that there could be reasons other than progression for the change, such as needle placement, I also knew that there was no way to know for sure. Therefore, I felt that the risk of continuing on AS had become too great and I went ahead and made a consultation appointment with Dr. John Libertino, a noted surgeon and Chairman of the Institute of Urology at Lahey Clinic. However, rather than make a definitive appointment for surgery, I asked the Dr. if he would give me a six month shot of Lupron so that I could enjoy the upcoming summer with my wife. He agreed, but what it came down to was that the surgery was never scheduled because further research revealed additional tests that could give me insight into the location and aggressiveness of my tumor(s). I felt that, if I did well on them, then I could continue on AS with some degree of comfort, particularly since two of the tests would actually give me a look at my tumor(s) for the first time. This would enable me to check for progression when I went in for a follow-up. These two tests were the CDU (Color Doppler Ultrasound) with a targeted biopsy and the MRI with an endorectal coil. Ultimately though, I was holding out hope for the release of new genetic testing that held the promise of being able to tell a person whether they ever needed treatment at all. To date, the only genetic tests I am aware of are the PCa3, ProstaVysion and DNA ploidy test, and to the best of my knowledge, these three tests do not have the ability to give that kind of insight. In fact, while I have not had the DNA ploidy test as yet, I did take advantage of the PCa3 and ProstaVysion test. The results of the PCa3 test were good with a score of 19.4, and the ProstaVysion results were just okay in that I was labeled a moderate risk for aggressiveness with a score of 4 out of 10. However, neither test came close to telling me that I would never need treatment.
Before the CDU and MRI scans, though, I had my 2011 biopsy slides sent out to Bostwick labs for a second opinion. On the positive side, they agreed that I was a Gleason 6 and even dropped the percentage of cancer in the cores from 45% down to 20%. However, there was bad news on two fronts. First, they concurred that I had cancer in four cores. Second, they found evidence of PNI (perineural invasion) in the left base. I had never heard of this term before and, when I researched it, I found that it is defined as the presence of PCa tracking along or around a nerve within the perineural space. Also, I read that PNI extensive enough to be sampled on needle biopsy MAY signal an increased likelihood of extraprostatic extension or, ultimately, of cancer recurrence. As a result of the finding, I arranged to have the biopsy slides sent to Johns Hopkins for a third opinion and, thankfully, they did not find any evidence of it. Still, even though Bostwick was the only one of three labs to find PNI, they are still a highly respected source for second opinions, and that made the upcoming CDU and MRI scans that much more important. That is because both of them are reported to be capable of finding evidence of extraprostatic extension. I talk about my CDU and MRI scans in the next two paragraphs; so for now, I will just say that, while I can't be sure, it looks like I dodged a bullet as far as PNI is concerned.
The whole CDU experience with Dr. Bahn was a roller coaster ride of highs and lows. When I left his office, I was on a high. Based upon the scan, he told me that I was a good candidate for AS, and added that he doesn't say that to a lot of his patients. He didn't even feel it was necessary to do a biopsy. In fact, the only reason he did do it was because I stressed to him how important it was to me. Unfortunately, the low came when I got the results back. They were not good, and I could tell that surprised even him. The good news was that I was still a Gleason 6 (and I'd seen a video by Dr. Charles Myers in which he talked about how if Dr. Bahn finds you to be a Gleason 6, then the chances of you having a higher Gleason score are low). The bad news was that the biopsy revealed a small tumor (5% of the biopsy core) that did not show up on the CDU scan. The problem is its location in that it is right up against, but not outside of the capsule near the left neurovascular bundle, which is a common pathway out of the gland. To add weight to the severity of the finding, it was his recommendation not to save the nerves from the left neurovascular bundle if I were to have surgery. (This finding raised my clinical stage from T1c to T2a, which is still within accepted AS guidelines, but just barely). Also, while the Dr. said that there is no convincing evidence of extraprostatic extension at this time, he added that he could not be sure. Still, due to my Gleason 6 finding and my favorable vascularity (blood flow), he was not opposed to my continuing on AS, but he was certainly less enthusiastic about the option after the biopsy findings than before. One other bit of positive news was that my visible tumor "crossed the border" between my left mid lobe and left base and Dr. Bahn felt that this could account for the finding of four cancerous cores in my 2011 biopsy.
My intention was to have an MRI (with an endorectal coil) after my CDU/targeted biopsy. I was keenly interested to see if the small tumor located near the left neurovascular bundle appeared on the MRI images despite not being seen on the CDU scan. This is because it is my understanding that these MRI images tend to miss insignificant tumors and pick up those that are possibly aggressive. So, if the tumor was revealed on the images, I would be looking at a possibly aggressive tumor located in a high-risk area for leaving the capsule. Also, I wanted to see if the MRI images, like the CDU scan, would find no evidence of extraprostatic extension. Unfortunately, I gained no insight at all from having the MRI due to the fact that the images were unreadable because my prostate was still hemorrhaging from the biopsy that I had one month earlier. This upset me greatly because I had been concerned about having the two tests so close together and, therefore, called three major medical/cancer centers in the Boston area to talk with technicians in their MRI departments to get their input. I explained my situation and each one of them said that I could go ahead and make the appointment because the MRI would be unaffected by the biopsy. This bad advice has put me in the difficult position of having to wait six months down the road before I can be retested to find out this important information (unless I can get the hospital to take responsibility for their mistake and retest me at no charge, or get Blue Cross to agree to pay for another MRI sooner than six months once I explain to them what happened).
So, that's my story to date. With only an MRI scan and a DNA ploidy test outstanding, my decision to remain on AS comes down to two things. One is the belief that I am a true Gleason 6 (although I realize that it is not possible to know for sure). I base this belief on the findings of four TRUS biopsies and one CDU/targeted biopsy, as well as on the second and third opinions I sought out. The second thing is that, even though my test results have not been ideal, there is still no clear evidence of either progression or extraprostatic extension. As I go forward, I do so with the knowledge that I will be able to use follow-up MRIs or CDUs, and an occasional targeted biopsy, to gauge progression better than ever before (and who knows, maybe one day there will be a genetic test that comes along that can tell me that I never have to concern myself with my cancer again).
One last added note. If I do find evidence of progression or extraprostatic extension, I am more ready for treatment than I was 4 1/2 years ago. I say this for two reasons: 1) I kicked my habit of drinking too much diet soda and, therefore, I no longer fear that I will be more susceptible to long-term incontinence problems. 2) Ever since my wife became pre-menopausal, our once great sex life has been on life support. So, if I am temporarily or even permanently impotent, things will not be a whole lot different than they are now. In fact, with these changes in my life, I sometimes ask myself why I still wait and take the risks I'm taking, especially since a lot of the feedback on the YANA forum regarding treatment is from men that consider life after treatment to be good (or even great). The only answer I have to that is that I still consider my quality of life now to be better than it would be after going through treatment. For example, despite the lack of sex these days, I still appreciate my erection and would miss it if I had surgery and afterward found it to be smaller, softer, or nonexistent. Plus, as far as incontinence is concerned, while I have an excellent surgeon lined up, there are those people for which surgery does not go well. So, why take that chance that I could be one of them if I don't have to, at least for the moment. For those who would ask why is it that you don't seem to be considering radiation therapy as a better way to go. My answer is that I have not ruled it out, but there are two main problems I have with it that have to do with my age (55). One is that I am concerned about being around long enough for the radiation to give rise to tumors in my bladder or colon. The other is that the longer you are alive after treatment, the more susceptible you are to recurrence, and I don't like the options available if this were to occur after "RT".
Please feel free to e-mail me if you have any questions or comments. I will be more than happy to help!
It is July 23, 2013 and I am updating my story a little late, but better late than never as the saying goes. Last August, I finally had my second MRI after getting approval from Blue Cross, and the results were disappointing. The MRI detected NO cancer at all, and I have a rather large visible tumor that can be seen on the CDU. I was disappointed and felt that it was a waste of my time. From my research, it was my understanding that these MRI images tend to miss insignificant tumors and pick up those that are possibly aggressive. On the positive side, one could argue that my large tumor was not picked up because it is not aggressive; hopefully, that is true, but for the MRI to have any value I believe it still should have detected it.
Right around this same time, I began to do research on drugs and supplements that have been shown (in small studies) to possibly slow the growth of my cancer. Neither my urologist or my oncologist would weigh in on my findings, except to point out what I already knew, and that is that the studies were too small to draw any solid conclusions. While I couldn't argue with that, I also didn't care. My feelings are that if they could possibly do some good and have not been shown to do any harm, then why not. Ultimately though, the ones that I chose were supplements because the drugs I researched had too many potential unpleasant side effects, and in the past, I have been that kind of person who experiences the side effects that other people do not (so much so that my wife calls me: "Mr. Side Effect"). I've been taking the supplements for some time now and have experienced no side effects whatsoever. It's hard to say whether they help, but I will say that my latest CDU showed no progression and my PSA and free PSA continued to be positive. In fact, while my PSA is stable at around 1.2, my free PSA has actually gone up from 25 to 30%. If anyone reading this story is interested in these supplements, I will be glad to e-mail the information to you.
Now, onto my latest CDU, mentioned in the paragraph above, which was on May 15, 2013. As I said, the good news is that there is no evidence of progression since my last visit, while the bad news continues to be the small tumor right up against the prostate wall near my left neurovascular bundle. In Dr. Bahn's review of my visit, he pointed out that I would have a stage T3a malignancy if that tumor had penetrated the prostate wall. Still, this time around the Dr. chose not to do a repeat biopsy even though it is the only way to attempt to gauge whether that has happened, short of having the prostate removed. Apparently, he felt that since the larger tumor was not progressing, then it was likely that the smaller tumor (which may, in fact, be a part of the larger one) was not either. (Also taken into consideration was the important fact that I am a Gleason 6 and that I have a consistently low PSA). Of course, I could always choose to get another TRUS biopsy locally, but I've had four to date and I feel that my prostate has been beat up enough, (which is something my urologist agreed with on my last visit just about a year ago). Also, I am someone who believes in the possibility of "needle tracking", and I don't want that needle to help the cancer leave the gland through that neurovascular bundle. So, here I am a little over a year since I wrote my story with a different frame of mind. Back then, I said I am more ready for treatment than I was 4 1/2 years ago. Frankly, at this point in time, more and more I see myself waiting for evidence that the cancer has penetrated the gland before I actually do anything in the way of treatments. Still, I wonder where the cancer would likely go once it exits the gland and how long it would take to spread to the point where these treatments will have minimal or no effect. In other words, if the cancer escapes the gland, how many good years can I be expected to live in light of today's varied treatments. I will say that I am encouraged by the seemingly positive information on the various HT treatments and the like that I read about on the YANA forum. Still, the question of how long I would have is a hard one to answer and has to be weighed against my age. In the meantime, I will continue to take my supplements, eat the right foods, maintain my weight, exercise and dutifully go back to California on a yearly basis for my CDU. In addition to all that, I have read about two new prostate tests, namely Prolaris and Oncotyp Dx, and I will be taking advantage of those as well.
Since I have last updated my story over a year ago, I am glad to say that my situation remains unchanged. My PSA is steady at 1.4, and has been for almost 5 years now. I also did my due diligence by returning to Dr. Bahn in May for my third CDU scan. The latest image continues to show no evidence of progression. I am not saying that my circumstances are ideal. It's just that the risks that I have chosen to live with, which have talked about in my story, remain the same.
I am happy to report, once again, that Dr. Bahn found no evidence of progression on the latest CDU scan, and my PSA continues to be stable at 1.5. So, I will be entering my ninth year of AS. If it all changed tomorrow, it would be hard not to be happy with eight treatment-free years, but obviously I'll take as many as I can get. I will certainly continue to do my part to make that happen.
I did not return to California for my yearly CDU scan, as I said I would, and I am still undecided as to whether or not I am going to take a year, or more, off. I know that the renowned Dr. Klotz, an AS pioneer, believes that a biopsy should be done only once every 4 years (after the second, which should be done 9-12 months after the first), and I am thinking that why should the CDU scan be any different? I am going to try to get some objective feedback on the subject before any definitive decision is made though.
In the meantime, my PSA continues to be positive, in that the last two results were 1.3 and 1.4. Plus, it has been stable for the last 7 years. Now, I know that, according to the NCCN, PSA is not a reliable indicator of progression, and that some of the more aggressive cancers produce very little. That being said, though, I take heart in the fact that all of my five biopsies revealed nothing more than a G6 cancer, and that my four CDU scans have shown no progression. All of those positive results have added weight to my decision to hold off on another scan, for now.
Alan's e-mail address is: firstname.lastname@example.org