My initial biopsy showed 5 out of 12 cores positive. They were all on the right side of the prostate. One core was 100% cancer, two were over 80% and the other two were over 50%. DRE revealed a suspicious hard spot. My Gleason score was 7(3+4). After my wife and I did a lot of research, we decided on the DaVinci surgery. I wanted to know exactly what I had, and surgery is the only way to know that. My surgery was in April of 2012. The surgery went well. I had a catheter in for 10 days. Initially, once the catheter was removed, I went through 3 Depends a day. I immediately began a walking regimen and could see progress with my incontinence daily. It took about six months to get down to using only one pad per day. Today; nearly 2 years later; I still use a very light pad, but only because of an occasional squirt every now and then. I probably go 2-3 days with nothing; but I never know when it might happen, so I don't take any chances. It mostly occurs when I am over-tired and I get up too quickly; or cough too hard.
The final pathology report was disappointing. My Gleason score was upgraded to an 8, and my stage was pT3a. That meant it had escaped the capsule. They also found cancer cells within the blood vessels of the prostate which meant that it "had opportunity to travel through my bloodstream". My doctor, therefore, told me to expect PSA tests every 3 months for the first year; and then decide how often after that. One bright side, was that my surgical margins were negative. However, to achieve that my surgeon had to cut aggressively. There was no nerve sparing. I had already dealt with ED since being diagnosed with Type II diabetes in 2001; but this surgery completely killed what function I had still had left. I think the fact that my wife and I had already dealt with the effects of ED helped me to get through that side of things.
That first 3-month PSA test; after the 6 week test; was very stressful. It was effectively 0, which was an incredible relief. Each test since then has also been 0. I have to say that even now, with my next one due in May, I still experience some anxiety as it approaches. However, each succeeding 0 does make the next one a little easier. After the first year of being in the "Zero Club", my doctor said that we could go to every 4 months for the PSA. I was surprised at what a victory that felt like. I had begun to see the PSA test as almost routine, so the relief I felt at being able to go to every 4 months was shocking to me. My doctor has said that we will stick with the 4 month interval for the next 2-3 years, at least, due to the Gleason 8 and staging. My research has led me to the fact that it takes, on average, 18 to 42 months for bone mets to grow large enough to put out noticeable PSA. That would explain the 2-3 years. So, while I have become more optimistic in my outlook, I still know that I am not completely out of the woods.
Living with cancer has certainly changed my perspective on things. As someone told me when I first got the diagnosis, once you are a member of "the Club", you are always a member. That is so true. While I do not wallow over the cancer; and the possibility of recurrence; it is always there in the back of my mind; especially when I know I am dealing with an aggressive G8 form. I have run the numbers through the Han table at Johns-Hopkins, and the chance of recurrence is high - 45% in the first 3 years; 63% in the first 5 years. But I do not let it have a victory over me - most times. I do have to admit that there are times when the beast looks unbeatable, and the darkness can get very bleak; but that is when my faith, and my family, strengthen me. I cannot tell you how much my wife has helped me to get through this. Having the support of a loved one is definitely one of the keys to overcoming this.
One of the hardest things I have noticed, as the date of my surgery gets further behind me, is that most people expect you to get over it by now. The surgery is past; it was a success; so quit thinking about the cancer. You are cured. Get on with your life. I wish it were really that easy. Every morning when I put that pad in my underwear I am reminded that it is not over. Every 4 months, as I realize I have to get that blood test again, I am reminded that this beast can be relentless. It can take its time, before it rears its ugly head again. Living with that is hard; and most people in my life, aside from my dear wife; do not have an understanding of how cancer affects a person, unless they have been touched by it in some way. Believe me, I would love to be able to just put it aside and say that I am cured. When those people say things like that, your best bet is to grin and thank them. I have tried explaining it to them; but have finally figured out it is best not to try; and pray that they never do understand it.
I am two years out from my surgery. I have been a member of the "Zero Club" for two years. I do take pleasure from that. But I will never relax my vigilance against this beast. I have learned how to live with the tension between depression over what might happen, and the thrill of still being alive and free of the beast for a season. I consider that to be a victory. There is life after prostate cancer; but it is a different life from what it was before the cancer. In some ways, it is more vital and alive than it ever was before. I now know what it is like to stare at the abyss of death. That is an experience guaranteed to change you. How you ride that experience out determines whether you find joy on the other side; or despair. I have chosen joy. :-)
It has now been just over a year since I wrote my initial story. A lot has happened, and it has been hard to try and put it into words; but I guess it could be helpful to others who are traveling this road. As I stated in my original story, I had gone two years in the Zero Club. That continued until January of this year. I had finally gotten pretty laid back about my 4-month PSA testing. I remember that the week before my appointment, I almost forgot about getting my bloodwork done. For the first time, I was absolutely certain that I would walk into the Urologist's office and hear him say: "Still undetectable, Mr. L. See you in 4 months". When I got to the doctor's office, the nurse asked me if I had gotten my bloodwork done, and I said that I had. They had not received the results yet. She called the lab and asked for a verbal result. I heard her repeat it, and it was 0.08; not the < 0.06 I was expecting. My PSA was no longer undetectable! It was quite a shock for me. Always before, I had gone in to these appointments dreading to hear that the PSA was rising. Now, for the first time, I did not expect that; and instead that is what I heard. Another thing to mention, that added to the distress, was that my wife had grown as complacent about it as me. She did not go with me to this appointment, since she was doing some part-time work. So, there I was; alone; with no notepad (another practice I had dropped); and I was being told that my PSA was no longer undetectable.
By the time the doctor entered the room, I was still trying to digest the news. He looked at the report and seemed concerned by the number. He went to great lengths to try and reassure me that this was still a very small number; and could be just a glitch at the lab. But he still seemed concerned that it was now detectable. He scheduled another PSA test for me in 8 weeks, and said he would decide what to do next depending on whether that showed another rise. He said if it stayed the same; or rose some more; that I might want to consult with a radiation oncologist to see if salvage radiation would be an option. He looked over my surgical and pathology reports, and said that it did not look likely that this would be a local recurrence; but a distant (think metastasis) recurrence. Because of my high Gleason score, stage of pT3a, and negative surgical margins; he did not hold out much hope that this was a local recurrence. He did give me a DRE to see if he could feel any tumor; but said he felt nothing, not even scar tissue from the surgery.
So, I left his office and went out into my car to call my wife and give her the news. She was extremely upset with herself for not having come with me this time. I reassured her that I was alright, and that it was just more of what we had become accustomed to, with this Beast - hurry up and wait. Now we had to wait 8 weeks and worry about whether it would rise even more. That eight weeks was the fastest; and at the same time; the slowest eight weeks I had ever had. I got the bloodwork done on Monday, and saw the doctor on Thursday. This time my wife came with me. I don't think she will ever miss another appointment of mine! When the doctor came in, he told us that the PSA was still at 0.08. In one aspect it was a relief that it had not increased. On the other hand, it confirmed that the PSA was now detectable. The previous reading was not a fluke. The urologist reassured us that not rising was a good sign; but that it was concerning that it still showed as detectable. He reiterated that it was a very low number, and still not proof positive of recurrence. He did suggest that it might be a good idea to see a radiation oncologist and get their opinion on radiation treatments; but he said he would leave it up to us.
My feeling was that I agreed with my uro; if this was the beginning of recurrence; then it was distant, not local. My numbers are indicative of metastases, if recurrence occurs. I asked him if it would be good to switch back to having my PSA tests every 3 months, instead of 4. He agreed that would be a good idea. We declined the referral to a radiation oncologist, until we saw the next PSA in June. We left his office quite depressed at the idea of us probably looking at the beginning of recurrence of the Beast. It was quite a shock for me. I didn't realize how much I had come to expect those zeroes. We both tried not to get too depressed about it; after all, it hadn't risen in those 8 weeks. That seemed like a good sign, and perhaps indicated that it was not the aggressive type. So, we endeavored to wait for the next test, and not get overly worried. Have you ever had anyone tell you not to think of something? What usually happens? You can't STOP thinking about it! I tried to go back to my everyday life; but that 0.08 number kept weighing on my mind.
So, now here it is; June. I had a business trip the week before I had to get the bloodwork done; so that helped me to keep my mind off of it. Finally, Monday rolled around, and I went to the lab to have my blood drawn. I wasn't too nervous. I had fallen back into the trap of expecting another 0.08. I figured it hadn't changed in those 8 weeks, so it probably wouldn't change much; if at all; this time. Maybe 0.09. My wife and I got to the doctor's office on Thursday, and the nurse went through her routine of checking my vitals. I found it odd that she did not mention the PSA result, because she usually told me what it was. When the doctor got in, I found out why. He told us that it was now at 0.11. You cannot believe how big a difference it makes between a zero and a one in the tenths column! I figured it out, and that was a 37.5% increase in 3 months. If that continued, it meant a doubling time of less than a year. All of the books and web sites will tell you that a doubling time of less than a year is very bad. Again, I was shocked by the result. No change for 8 weeks, and now this!
The doctor said that it was probably time to consider talking to a radiation oncologist. He again said he did not think it was local; but it would be good to get another opinion. We agreed, and he made out orders for a referral. Again, he told us that it was still a very small number; but I could tell that he was concerned. He did schedule me for another PSA test in 3 months. My wife and I left his office very concerned. On the ride home, we discussed about seeing the radiation oncologist, and I suggested that maybe it was time to start looking for a medical oncologist who specialized in PCa. She agreed, and said she would start making inquiries. We did find a medical oncologist who specializes in Prostate Cancer, and I am scheduled for an appointment the first week of July. They have requested all of my medical records; including the surgical report, pathology report, and all slides from my biopsy and pathology. They will re-evaluate all of them, and see if they concur with my Urologist's findings.
So, once again, it is a waiting game. Now I have 2 weeks to worry and wonder what comes next. It does appear as if the Beast has returned, and I will have to walk the Advanced Prostate Cancer journey. I am struggling to hold the fear at bay. I keep telling myself that it is still a very slow growing cancer. But I do realize that I am still young enough that it could actually kill me. This is a battle that continues to plague me; but I am determined to continue the fight against it. I am glad that I have my wonderful wife along side me to walk it with. One of the hardest things about this Journey has been seeing the toll it takes on her, and on our kids. The worst of the battle is not the pain; whether from surgery, bone mets, or treatment side-effects. The worst of it is all mental. If I lose the battle in my mind, then the physical battle becomes even harder to bear. I am grateful for the faith I have in my God, because that helps to sustain me for the mental struggle. And I am grateful for the love of my wife and kids. That also gives me strength to keep fighting. I find myself, once again, staring at the abyss of death. This time it seems more tangible; but I know that I still have the choice between despair and joy. As hard as it is; I still choose joy. I will continue to fight this Beast for as long as I can; and with the help of my God and my family; I will fight this battle with all that I have. I will try to keep this up to date, and report what the medical oncologist has to say.
I know it has been a while since I updated my status. I suppose I could give many plausible excuses; but the truth is that I just don't want to have to deal with this Beast anymore. I am tired of it. Even though the news is good, for now. Even though I am back in the Zero Club. Maybe it's because of those things that I don't want to revisit all of this. It would be nice to be able to just lay back and believe that THIS time I really am cured. But I am getting ahead of myself. In my last update I talked about the rise in my PSA, and having scheduled a meeting with a medical oncologist. I did have that meeting. It started out on a bad note; as my wife had come down with the flu, and was not able to go with me. Fortunately, my oldest daughter was able to meet me there, and went to the appointment with me. It is always good to have another set of ears to make sure you catch everything the doctor says.
I was seeing the head of the Prostate cancer center at the University of Michigan. Thay had a very good reputation, and my wife and I wanted the best. It was a 2 hour drive for me; but worth it to get the best advice. Before the head doctor saw us, one of her staff talked with us, and went over my records. He noted the G8 score and pT3a stage. He mentioned that the PSA assay my lab used was unfamiliar to him. Their assay only registered down to 0.1; and he said that only this last score would have registered as an increase for them. He noted; like my uro had; that it seemed to be a very low number, and indicated that it was most likely a local recurrence. He said that distant recurrence usually rises much faster. He told us that everything in the records indicated that salvage radiation was my best chance at this point. He was still not overly optimistic - he said that, with my numbers, there was less than a 50% chance that the radiation would cure me. He did say that it could slow things down, though. He left us to chew over that, and said he would go bring back the head doctor.
My daughter and I waited a few minutes, and he and the head doctor returned. She was very personable and polite; but I could tell that she was busy. Still, I felt like she was willing to stay there with us for as long as we needed her to. She reiterated what her colleague had said, and went into a little more detail on studies that showed the slower the PSA rose, the more likely it was a local recurrence. She gave us the same odds of the radiation curing me; but thought that was the next best step for us. She said that they could do the radiation there; or we could seek someone more local to administer it. She said that what was needed was pretty routine, and most local cancer centers would be just as good as the university. She then wished us luck and that was that.
After I compared notes with my daughter, and consulted with my wife on the phone, I headed home; still worried, and not very comforted by this trip. My wife and I agreed to see the radiation oncologist that my uro had recommended. The earliest I could get in was late August, so I made an appointment for then. Again, it was hurry up and wait. The time passed quite slowly, and I had thoughts of bone mets running through my mind. One thing I have learned with this battle; the mind generally tends to go to the darkest place it can, and conjures up all kinds of terrifying pictures. Once again, it was the mental battle that was the worst!
The day finally arrived to see the rad-onc. I was nervous, as was my wife. The doctor was very kind; but seemed awfully young to me! He was very friendly, and greeted us kindly. He went over my medical records again, and looked at the notes from the medical oncologist. He then told us that he agreed with their findings; but thought their odds were rather low. He said that they had been having much success with the salvage radiation and thought there was a very good chance that this could cure me; as long as it really was a local recurrence. He said that, unfortunately with a PSA as low as mine was, there was no way to be sure if it was local. I was already aware of that from my own research, and told him so. He then went through what the procedure would entail, and said that they would set up a time for me to go through what he called a "simulation". That would be where they would have me measured for a saddle for my legs so that I would be able to be in the same position for each treatment. There would be 37 treatments; one per day, five days a week; for 7 weeks, and then 2 extra for the 8th week. He said they needed time to prepare everything and thought it would be the middle of October before they would be ready for the simulation. That worked out well, because my 40th wedding anniversary was in October, and our adult children had purchased a week's vacation at a beach in North Carolina. The simulation would be the Monday after we got back.
The day arrived for the simulation, and I ended up going alone, since my wife was working again and they expected everything to take some time. Along with the simulation, they did a bone scan and a CAT scan. Once those two were done, they took me back into one of the rooms where they administer the radiation. They had me disrobe and put on the "hospital gown". Then I had to lay down on the bench of the machine. I put my legs up onto a bean bag and they got me positioned where they wanted me. They then sucked the air out of the bean bag, which caused it to form a hard shell around my legs. They then marked this with my patient number, so it would be available for the treatments. One thing they had not mentioned to me beforehand, was that they needed to shoot some dye through my urethra so that they would know where to shape the radiation waves to avoid causing urinary problems. To do that, they partially inserted a cath tube. That was very unpleasant!
Finally, the simulation was over. All tests had been done, and everything was ready for me to start the treatments. I started them the end of October, 2015, and the last treatment was over on December 10. The treatments were not difficult. It only took about 10 minutes for the actual treatment. Changing in and out of the hospital gown and getting me lined up for the treatment took longer. Altogether, I was in and out of the hospital within 45 minutes. I was told to expect any side-effects from the radiation to begin within 2-3 weeks. The most likely SEs were fatigue, bowel problems, and urinary problems. About halfway into the third week was when I began to feel the fatigue. About half an hour after I got back to the office, it would hit me. I would begin to feel very sluggish. It got worse as Friday approached. Friday evenings I would go to bed at 8:30. I was trying to be at work at 6:00 AM every morning, since I was gone about an hour and a half every day for the treatments - that included the 20+ minute drive each way. As I said, the fatigue would get worse as the week progressed. Also, I noticed that the severity of the fatigue increased each week until about week 6. From that point it never get any worse. My wife was very good at leaving my weekends free so that I could rest and recuperate until the treatments started again on Monday. Our children were very considerate of my needs, as well, and would not bother me during the weekends. They still checked up on my progress through my wife; but they did not want to tax me any more than was necessary. That was probably the longest 7 and a half weeks of my life. By the end, my wife commented that I looked very pale and drawn on the weekends. The only other side-effect I had was diarrhea. That didn't start until after week 6. I took a a pill every day to help control that, and that seemed to work nicely. I never did experience any urinary problems; the most common being urgency, and incontinence. Overall, except for the fatigue, I thought I tolerated the treatments fairly well.
After the treatments were over, they waited 6 weeks before doing a PSA test. The rad-onc told me not to expect instant results. That sometimes it took several months for the PSA to go down. He did say that the SE's from the treatments should wane the longer I went post-treatment. The fatigue seemed to linger for about 3 weeks, each day being better than the day before. It has now been 8 months since I finished the treatments and I no longer feel any effects that are not just part of the fatigue that I normally feel after a long week of work. Anyway, the 6 weeks of waiting for that first PSA test were another test of my mental battle. Would the PSA be lower? Was it really a local recurrence? If not, then my PSA would not change; or could even be worse. It was a long 6 weeks. Finally, I had the blood drawn, and my wife and I went to see the rad-onc. Unbelievably, the PSA was < 0.06. It was undetectable again! The recurrence must have been local! What a relief that was! My wife and I were ecstatic. We went out to dinner that night to celebrate. The rad-onc wanted to see me again in 6 months. That would be July of this year. In the meantime, I was to see my uro every 6 months, as well; but set it up so that I was seeing one or the other every 3 months.
This has gotten long, so I'll wrap it up. I did see the rad-onc again in July, and my PSA was still undetectable. He said that as far as he was concerned, I no longer needed to see him. I was cured of the recurrence and I should go back to just seeing the urologist. That was very welcome news! One less doctor to see is a blessing. It would be good to go back to just seeing my uro. And so, life is returning back to the "new normal". Once again, I go back to periodic PSA tests. I have experienced recurrence and lived through the treatment, and appear to be "cured" once again. Did you catch that? I said "once again". They told me I was cured for almost 3 years after my prostatectomy. Now they were saying I was "cured" again. One thing I have learned in this battle, is to never count the Beast out. I have looked at the nomograms. I've done my research of medical papers. The cold hard fact is that Gleason grades 8-10 almost always metastasize. The average time for bone mets to show up after a recurrence is 8 years. So, have I lost my vigilance? Never again! While I will not let this Beast rob me of my joy for this moment; I will never be able to see myself as "cured". I will enjoy whatever respite I am given; but in the back of my mind I know it can still come back. And I will be watching for it. I still live my life as always. We have had new grandchildren; new celebrations of life; and life goes on. I celebrate that life; but I will always be in "the Club". People still don't get that. Those who have never had to face this Monster. Again they ask me why I don't just get over it. It was a local recurrence. The radiation took care of it. You are cured. Quit dwelling on it! Again, I just smile and thank them. I thank my God that He has again given me more time to enjoy my life. I still choose joy. But I remain vigilant. And as I said at the beginning of this update; I am tired. I don't want to be vigilant. I want to just believe what my well-meaning friends say. I don't want to have to write more updates of how I'm doing. But I will. I remember how good it was to read some of these stories, and know I wasn't in this battle alone. If my story can help someone else who is facing this Beast for the first time (or the second, or third time!); then I want to do that. Keep fighting, guys! But don't forget you can choose how you fight it. Choose joy.
Bob's e-mail address is: firstname.lastname@example.org