I am recently diagnosed with Gleason 7B (4+3), so I am still feeling my way through all of this. I will post updates as my situation and my treatment progress. I am a Medical Technologist MT(ASCP) and have been in the Medical Field for over 35 years, so the lingo does not intimidate me and I am pretty familiar with the pathology of the diagnosis. I never thought I would have a cancer, I'm breaking new ground in my family history. Two years ago (August 2015) my PSA was 3.5 and my DRE was normal. One year ago (August 2016) my PSA had increased to 7.8 and my doctor's opinion at that time was that the value of the PSA as a test was somewhat questionable and lead to many expensive and painful biopsies that were unnecessary. DRE at that visit was normal, so we opted for a wait and see approach. At my last annual exam in August 2017 my PSA had increased to 11.29 and my doctor's impression of the DRE was that the prostate felt somewhat spongy. Off to the Urologist who repeated the DRE and said the DRE was not suspicious at all to him, but in light of the doubling of the PSA he felt that a biopsy was the only prudent way to determine whether there was a cancer involved. He did 10 biopsies, not as unpleasant as I had imagined, but not a lot of fun either. At that time, he said that the size of the Prostate was about what he would expect for someone in my age group and that he saw no focal areas of concern. He assured me that he felt confident that all would turn out well. However, 2 biopsies returned as Prostatic Adenocarcinoma, Gleason Grade 4+3=7 (Prognostic Grade Group 3), one involving 88% of the tissue and the other 50%. I have an appointment with the Urologist to discuss treatment options on Wednesday November 8, 2017. I am leaning right now towards Robotic Laparoscopic Surgery but Gleason 7 might, from what I've read, require open surgery so that they can test a few sentinel lymph nodes for metastasis. [That is not correct -- all of that can be done using the robotic surgical techniques]. I will know more after I speak with the Urologist on Wednesday. I am most worried about the prospects of urinary incontinence, and of course the possibility of a metastasis. All methods have their upsides and their downsides. Surgery, if nerve sparing, seems to offer the best chance for full remission, assuming that the capsule of the prostate has not been breached and no cells have moved into the blood stream. At least with the prostate out of the equation, my PSA will become a better diagnostic indicator of metastasis. Other tests may be recommended, I will update this as soon as I speak with the Urologist and as my treatments progress. Many posts recommend a second opinion, even a second opinion with a different kind of doctor (i.e.: surgeon vs radiation vs Chemo). My Urologist is a surgeon and I assume he will lean towards some aspect of surgery. My Urologist is a little suspect right now since he described my DRE as not suspicious at all after my primary care doctor had reported slightly spongy. Maybe I'm being nit-picky, I have never felt of a Prostate so it is probably a real art.
Since my last update, I have spent three weeks anticipating all sorts of bad news and complications, none of which have come to pass so far. I met with my urologist, who refused to be anything other than optimistic about my prognosis. He said that I should not panic. Well, too late, that horse was already out of the barn. He spoke about my options, Surgery (traditional or robotic), Proton Therapy, Chemotherapy (not recommended at this point), active observation (not in my game plan, I want the tumor just gone), something called Cryoknife (experimental edge), radiation therapy, and on and on. Nothing he outlined made me doubt my decision to have robotic surgery. I asked him if either surgical method had advantages over the other. He said that robotic surgery had a much faster recovery time. I asked if the lymph nodes could be biopsied with the robotic surgery, and he said "certainly" (score one for Mr. Editor). I told him that I would go with the Robot-assisted radical prostatectomy. My reasoning is that I, personally, want the tumor removed. What I see as the advantages is that once removed, my PSA should go to somewhat undetectable (0.01ng/ml) or at least stable near the lower detectable limit and offer some reassurance that the tumor was contained. If my PSA does not go to undetectable then I know soon that there were possibly metastatic cells that escaped and I can start pursuing treatment sooner rather than later. I met with the surgeon, who looked amazingly like Jim Carey. He was very optimistic about the surgery and also tried to calm my fears. The three weeks before surgery seem to be when your mind wants to mess with you a little (or a lot). My dreams starred Jim Carey waking me from surgery and telling me the bad news. The day of surgery arrived all too soon it seemed. I will skip some of the pre-surgical details, not because I want to, but because I was given Versed (midazolam) prior to surgery and the memories just aren't there. I remember the surgeon pointing out the robotic device, but I don't remember seeing it. White goes to black. When I awoke from surgery, I remember intense nausea and tried to throw up (Versed apparently does not block nausea memories!), then things go black again until I am being moved from a gurney into a bed in my hospital room. I suppose the pain of being moved re-stimulated my memory center. I remember someone asking me to grade my pain on a pain scale by my bed, and sissy that I am I claimed the 10 ticket and promptly fell back into blackness. When I awoke again, I noticed I had a catheter and five new future scars on my belly. Four of them look like a dashed line along where my beltline is, and a vertical one above my naval, all about an inch long. Also, it feels as though someone inserted a golf ball under my bladder when I try to sit normally. I think I bit my tongue during surgery, as the left side is tender and swollen, and the anesthesia tube gave me a sore throat, but not intolerable. Later, the surgeon came to visit and I was told that the surgery went very well, that he felt that the tumor was completely contained within the prostate, and that he felt very confident that the Pathology report on the prostate would confirm that. He also said that he examined the lymph nodes and did not see any reason to biopsy them, said they appeared perfectly normal, and that he did not feel it was worth the risk of bleeding to mess with them. Post surgically, the catheter was pretty uncomfortable for the first day, and I felt like I had been punched in the gut. I walked around the hallway to prove to the nurse that I could, and then I walked a second because it made things kind of settle back into their slots inside. Sleeping in the hospital was beyond my grasp, too many lights, too much noise, too many things squeezing my legs, and too many aids checking my temperature. To make matters worse, my mouth was bone dry and I could not seem to work up any spit. I drank a few quarts of water and chewed ice until I was sore in the jaw. My mouth tasted ugly and I assume it smelled as bad as it tasted. The second day, I was getting used to the catheter and it wasn't such a big deal. The pain in my belly was much improved, at least until I had to cough. That episode felt like I was tearing myself in half. I walked about four laps every 2-3 hours on day two and catnapped between walks. I got sent home the second day, so less than 36 hours after surgery. Apparently all that walking paid off. I was feeling a little sleep deprived so I begged my doctor for some Ambien to take home and he prescribed five. My wife drove me home and I think she plotted a route that had multiple speed bumps to cross and at least one curb to jump, maybe I should have been nicer to her before surgery. However, I made it home, got in my bed, and fell asleep without taking the Ambien and slept for 11 hours straight. Day three after surgery, I was feeling much improved, the sleep seems to have mended a lot of complaints. I got to take a hot shower, and that made me feel human again. Now I will wait for the Pathology report to see if the tumor was contained. I feel like I am in the eye of the hurricane, the skies are blue!
September 14, 2018. Almost a year has passed since my last update. A lot has happened as I travel this path. My pathology report showed clean margins, no involvement of the neck of the bladder. However, there were extra-prostatic extensions of the tumor and the seminal vessicles were also involved. My urologist says at this time that I have several folowup options to consider in light of the extra-prostatic extension and the involvement of the tumor in a gland (Seminal Vessicle) other than the prostate, which markedly increased the risk profile. Radiation therapy seemed to be at the top of his list, then chemotherapy which he did not think was even worth considering in my case. He continued to be optimistic in spite of this, saying that he was certain that they got all of the tumor and that my PSA would fall to undetectable. He said we could do the initial post surgical biopsy at 60 days rather than 90 so that I could stop worrying. As for the catheter after surgery, in hindsight it was not too bad, just stayed at home as much as possible and took it easy. When the time came to remove the actheter, my urologist warned me that I would have a period of incontinence lasting from a few months to as long as a year. If it persisted longer than that, then there were options that we could pursue. Upon removal of the catheter I was surprised to have some degree of control. I had a few close calls at first but after a few weeks those were few and far between. After a month I was more or less back to normal and feeling pretty optimistic since I had not had any period of actual incontinence. Perhaps things were going my way finally. He gives me a copy of my pathology report and sends me home.
On February 13, 2018, at 60 days, the Urologist ordered that a Free and Total PSA be performed. The result of the total PSA was 0.07 ng/ml. Well, that wasn't undetectable but maybe it was headed in the Right Direction. He would check it again in 3 months. Al else seems as well as he had expected. He was surprised that I had not experienced any incontinence at all, said I was beating the odds finally.
Skip forward to May 15, 2018 and the doctor orders a Total PSA. The result of this is 0.09 ng/ml. My doctor is "very concerned, now he feels that I should start thinking about possible rediation treatment. He gives me a copy of my report. When I look at the report, I notice that the PSA was done at a different laboratory than my previous one. The first report was ordered as a Free and Total PSA which the local hospital referred because they do not do Free PSA. The second was only ordered as a Total PSA, and the hospital performed this test in-house. Both reports have a disclaimer clearly printed on the bottom of the page saying that due to the ultra high sensitive nature of this test you can not compare results from different methodologies or from different labs. I brought this to my Urologists attention, and he did not seem to understand my concern. He said that a Free PSA was not indicated in my situation. I showed him the notice on the bottom of the page and he agreed that we should wait another 3 months. IAgain, I am a litle astonished that my Urologist seeems to be unaware of these improtant details.
Skip ahead to August 13th, 2018. Doctor again orders a Total PSA. After the results come in I ask that he also order a Total PSA from the reference laboratory that the hospital sent my original PSA to. He sighs, says OK, and off I go to have blood drawn again. At my appointment the next day, he tells me that my PSA from the hospital was 0.11 and from the reference lab it was 0.10, and that in his mind this was now a definite trend and that I should consult with a radiation oncologist and he will see me again in 6 months.
A physician friend of mine who had been treated at this facility for a Brain Tumor convinces me that I should pursue Proton Therapy as opposed to traditional radiation therapy. Hisreasoning is that Proton Therapy has fewer side effects and is able to deliver more radiation to the tumor with fewer side effects. I am pretty convinced that he is right after I read everything I can find on the internet about Proton Therapy and Radiation Therapy. I call a nationally renown cancer research hospital in Houston, opting at this time to forgo anymore small town doctors and go straight to the Ivory Towers. My appointment is set for September 11,2018 for multiple scans and more lab tests. The case nurse is astounded to hear that I did not have any scans performed prior to my surgery. Maybe it was a sales pitch about how thorough they are or perhaps the scans are god for a few insurance dollars. However, I have committed myself to being a good an compliant patient.
September 11, 2018 I pack my bags and head to the big city, sure that they will not find anything and I will be sent home with a diploma. They draw a bunch of labwork, including a chemistry panel, BUN, Creatinine, GFR, PSA, Testosterone, and a CBC with a manual differential. They consult with me and I learn that the treatment is about $150,000 and that most insurances do not pay for it. In my case, they are specifically not in network with my insurance company, so even if it is covered, I will pay 40% of $150,000 ($60K!!) plus the $2,000 deductible, I should check with mine to see if they do. WOW! Then she says that Medicare does cover Proton Therapy, so I am thinking perhaps I will put this all off for 6 months. She says I should continue the evaluation to see if I am even a candidate. Apparently I am a candidate if the scans indicate that the tumor has not metastasized to other organs. I go in for a CT scan with and Without enhancement, it goes a lot faster than when I last had a CT scan, or maybe they have better equipment. At any rate, it was not much different than getting a simple X-Ray except that now I glowed in the dark (OK, just kidding). The MRI was much more tedious, an hour waiting. another hour inside of a machine not much bigger than a coffin, a really noisy and uncomfortable experience that was about as fun as a colonosccopy. They actually make it more uncomfortable, if that even seems possible, by placing a "Coil Receiver" where the sun does not shine.
September 12th, 2018 I am to see the Radiation Oncologist to get her decision about whether I am a candidate. Once again I am nervous as a cat, wondering if she is going to tell me I lit up the scans. The doctor walks in, she is a 30 something year old supermodel We talk for a little while, she answers a lot of technical questions about how Proton Therapy works. She has probably tried to explain it to 500 patients before and the resignation to another round shows plainly on her face. I tell her that I havve been in the Medical field, and that I am pretty fluent in the language. Now she looks a little more enthused. My last question is "What if the scans all come back negative?" She says, that is a very good question, but let's come back to that. She brings up my CT scan and runs through it several times and says that she does not see anything in the way of a tumor or suspicious Lymph nodes, but that she would wait a little while to see if the Radiologist concurs. The MRI is not in her file yet, So I sit in the exam room for about an hour. Finally she gets the results. She says that neither scan shows any indication of a tumor or lesion of any sort, but one could be very small. Hooray, right? She says the good news is that they did not find anything, but the bad news is that the PSA is coming from somewhere and they can't locate the source. She then says that she needs to do a quick physical exam. I did mention that she was a supermodel, right? I say OK, she feels of my neck and looks down my throat, then tells me she needs to check my Prostate, assume the position! I am pretty certain that if I was 30 again I would have enjoyed that, maybe even asked her to marry me! As it was, I was an old man standing there blushing like a school girl as I pulled my pants down and submitted to an exam that I thought I would never have to go through after my Prostate was removed. Afterwards, while we both cooled off, I asked her if the fact that Vitamin B7 (Biotin) interferes with the ultra-high sensitivity PSA is something that could be causing a false positive bias on the PSA. I had read that it did actually affect it, see Mayo Clinic.org. She said that she had never heard of that and did not believe it. I showed her the article and even then she remained unconvinced. I think she thought I was grasping at straws to keep from having to accept that I have cancer. I noted to her that the PSA performed by all facilities, the reference lab, the home town hospital, and a second reference lab, even their lab were all done in the morning an hour or so after I took a B-Complex vitamin with Biotin stated specifically on the front label at many multiples of the recommended daily allowance. Also, I noted that her hospital did not even do a Ultra high sensitivity PSA, or they failed to report out a significant digit since they reported my result as 0.1. That got her about as flustered as I was when she probed me. She agreed to do the PSA, but said that no matter the result, the fact that I had seminal Vessicle involvement and an extraprostatic protrusion of the tumor, that she thinks I should have done radiation as an adjunct therapy after surgery. She said that they considered those two details as enough of a risk factor even without the evidence of the PSA
I am still probably going to get the Proton Therapy, but maybe after I turn 65 in April since Medicare will cover it. Meanwhile, in the months between now and April, I will have a Bone Scan to help rule out a bone lesion (although she says that bone scans are not really good at detecting small lesions. She has also ordered a more prostate specific test called a F-18 Fluciclovine PET Scan. If you need more information than that you can search that name or Axumin (brand name), or anti-3[18F] FACBC or F18 or Fluciclovine (18F) or F18. As it was explained to me, PET scans using a radioisotope tagged glucose molecule are not well suited for detecting slow growing cancers like Prostate. The Axumin protocol is a variant of the Pet scan protocol that is indicated for imaging in men with suspected prostate cancer recurrence based on a mildly elevated PSA level. Well, that describes my condition to the T. My physician also wants me to start "Hormonal Ablation Therapy" which is the technical term for "Chemical Castration". I wonder if she wants me to do that because of my reaction to her giving me the digit? She tells me that it will make me cry a lot, have hot flashes, make me moody, probably depressed, possibly suicidal, and generally fatigued. Oh, and perhaps I will grow Man Boobs. This does not sound even as fun as the rectal probing! It even sounds much worse than the Coil Receiver thing that I had to clnch and hold where the sun doesn't shine for over an hour during the MRI.
That is all I have at this point. I have a lot of questions, but no answers. My next update will be either as I get results of the F18 and the Bone Scan. My next appointment is in April when I am supposed to begin Proton Therapy.
Wow, a year has passed since I last updated my story. A lot has happened, and a lot has changed. When I last wrote, my plan was to go to M.D. Anderson and do Proton Therapy with Androgen Deprivation Therapy (ADT). When I last updated, I was scheduled for a Bone Scan, which came back negative, and the F-18 Fluciclovine PET Scan. The bone scan was routine, not a lot different than the myriad other scans that I was subjected to. The F-18 was a little different in that I was given a drug called Axumin (brand name) which had to be prepared in San Antonio, and then delivered by courier to the scan facility in Katy and administered within 4 hours. I had read too much about the possible side effects and adverse reactions to Axumin, and I was nervous. As it turned out, it had no noticeable side effects and the scan was so quick I thought they must have forgotten to start the machine. Much easier than a CT scan anyway. The result of that test was also negative. So, I had every possible scan M.D. Anderson had to offer and still no clue where the post-surgical PSA was coming from. All that was left was to get the radiation therapy. On February 1, 2019, I got my six-month Lupron injection and started the Celodex pill daily for 6 months. Lupron and Celodex apparently do about the same thing, but the Celodex kicks in faster. I basically went through Manopause within a week or so, and headaches and hot flashes became a way of life. My energy levels were at a new all-time low. I count myself lucky that I did not grow man boobs. I did become very emotional, something I could not really control any time I had to talk about my condition. It is amazing what testosterone contributes to quality of life. I was missing it after the first week and wanted it back.
In late February I thought about how disruptive going to Houston was going to be for me. I would live in a hotel room, not see my family as often as I wanted (this was a big deal to me), have the expense of eating out every meal, the expense of parking at the Proton Center on a daily basis, and only being home on the weekends. I talked to a doctor friend of mine who had a brain tumor and had spent a lot of time at M.D. Anderson. His opinions carried a lot of weight with me. He felt like perhaps Proton Therapy and M.D. Anderson was a bit of overkill for a condition like mine which was, as he put it, more of a bread and butter treatment for any reputable cancer center. He also told me his stories of how long the waits were as the Proton beam cycled through several treatment rooms. He advised me to at least talk to a local radiation group and get a second opinion. I made that appointment, liked the Oncologist there a lot, although he was not as pretty as the Oncologist at M.D. Anderson. Still, he came across as very knowledgeable and said basically the same thing, this was very routine, there would be minimal discomfort, their average wait time was about 15 minutes, and the treatment would take about a half hour. I decided that disrupting my life would not enhance my quality of life, and that a positive attitude was also important. I felt I would have a hard time being positive if my life was turned upside down. M.D Anderson was sad to see my wallet go, but I know that they are not holding a grudge because they send me a solicitation for a donation every month.
April 1, 2019: I begin Radiation Therapy at Texas Oncology. As promised, I spent very little time in the waiting room. In my simulation, I am told that I needed to show up for my appointment with a full bladder, an empty colon, and no gas, every day for eight weeks. I am wondering if that is even possible. How am I going to control all of that? On my first treatment I had a full bladder, way too full. Even the half hour treatment was going to be a challenge, especially with no prostate to help me out. Fortunately (I guess) I also had gas, so I was sent to the restroom to relieve that problem. What I found out was that with no prostate and a very full bladder, that you can't pass gas without losing your water. They were very patient with me, after all, I am a newbie. They make me drink six glasses of water fast, wait 15 minutes, and put me back on the table and off we go. They do 12 shots, each taking about 40 seconds. Then it is off to the restroom at a run to relieve my poor bladder. One treatment down! As my treatments progressed, I got better at knowing when to drink my 32 oz of water so that I showed up in a state where my bladder was full enough to make them happy, but not so full that I could not make it. I learned that beans and cabbage were off the menu for 8 weeks, and fiber supplements became a way of life to regulate my bowels. I also had to take a high dose of Simethicone to control any gas.
During the treatments, I did not suffer any side effects at all. It was a pretty mundane experience. I did not suffer any of the skin irritation or rash that I was told happens. None of the scare stories that other patients told me to expect came to pass. I can't say the same for what Lupron was putting me through, but if that is what it takes to conquer this thing, then so be it.
June 4, 2019: My last treatment. They gave me a diploma and threw confetti in the air like it was my birthday. In a way, I guess it was; it was the first day of the rest of my life. I was, and still am, pretty optimistic. They let me discontinue the Celodex, and I thought the Lupron would wear off by the sixth month and all would be good. Well, as it happens, the Lupron deprives you of Testosterone completely for 6 months. I am told that it will probably be a year before my hormones return to normal. I start noticing issues that I think are associated with either the Lupron, or the radiation. I am tired. I walk a short distance, and my legs feel like I have run a marathon. My tendons feel like they are about an inch too short and I notice I walk like a man 20 years older than I am. My strength is sapped, and my motivation to do any work is nonexistent.
September 2, 2019: I get my three-month follow-up PSA and Testosterone drawn. My PSA comes back undetectable, but my Testosterone is also low. The Oncologist tells me that the PSA being undetectable is a good sign, but since the Testosterone is still low that it is possible the Lupron is still suppressing the PSA, so the jury is still out. A few weeks later, I am crippled up with a sudden onset of sciatica. I can't sleep, I can't lay down, I can't sit down, walking and pacing all night becomes a new routine. My mind immediately wonders if maybe the mystery of the tumor is finally manifesting itself in my spine. I make another appointment with the Oncologist. He does not buy in to that theory, saying that if it were a bone metastasis, even while I was on Lupron, that my PSA would be way up. That is comforting. He tells me to see my primary care doctor, who prescribes drugs for the pain, a steroid shot, and physical therapy. None of this helps but over the course of a few weeks I get somewhat better. Then the back pain moves to my other side and I start over. I start getting a nervous twitch in my legs, like jumpy leg, and my toes ache. I am still dealing with all of that as I write this update. I now think it is probably either a side effect of the Lupron, of a side effect of the radiation therapy. I have also begun to have moderately uncomfortable bowel issues. Going to the bathroom has become a daily challenge, I feel as though my bowels have lost their coordination and just cramp instead of move. All of this is background noise that I can deal with.
In summary, I live on, things are looking up, I'm not out of the woods, and I have a few minor side effects that I can live with. I am scheduled to have another PSA at 6 months and at a year, then yearly for 5 years. I will post those as they happen, but hopefully those updates will be much shorter. I feel like I have climbed a mountain and now I am going down the other side. It still isn't easy, but I am spending less time worrying. My blood pressure has become more predictable and I am hoping that my doctor can reduce or delete some of my blood pressure meds. Whether the elevated BP was stress, or Lupron I am not sure, but I feel less stressed regardless. Cancer no longer dominates my every thought, and for the first time I am starting to think that maybe life is getting back to normal.
It has been a while since I updated my story. At this point it has become pretty mundane for the most part, but there have been a few exciting moments. My PSA briefly went to undetectable shortly after I finished external beam radiation therapy beginning at age 65 so Medicare could cover the expenses. However, my optimism was mitigated by the fact that Lupron still had my testosterone suppressed. In August of 2020, my PSA level returned at a very low 0.045. Three months later (Nov 2020) it was 0.047. Not much change, so I was cautiously optimistic. I had been taking Biotin in the form of a B-Complex vitamin trying to boost my energy a little, but it hadn't had any noticible effects. As it happens, the Ultra Sensitive PSA procedure used by the lab I use is a sandwich assay and the carrier molecule is Biotin. This made me wonder if Biotin was causing either a false suppression or elevation in my PSA levels. I spoke with my doctor, he had never heard that, read about it, agreed that maybe possibly it could have had an effect but he was kind of doubtful. However, he agreed that the B-Complex vitamin probably wasn't adding anything to my treatment and recommended that I stop taking it. My next PSA in Feb 2021 was 0.104, a definite increase. But the lab inforemed me that they had changed methodology, so I wondered about that. We are, after all, looking at billionths of a gram, and I am suprised that technology can even offer precision at those levels. A few years ago, I would have still effectively been undetectible, but now we can look even closer at PSA levels and see slightly more than nothing. After another three months of worry, in May of 2021, I return a result of 0.108, and three months after that (Aug 2021) I repeat the exact number, 0.108. My oncologist is pretty low key about that, I think he is getting a little bored, but I choose to think he is optimistic. However, he says we will stay with the active monitoring. Three months later, in Oct 2021, my PSA is elevated again at 0.167. My Urologist says enough, we have a definite trend, I need to switch from the radiation oncology to a medical oncologist for chemotherapy assessment.
In December of 2021 I get to worry in a whole new manner. I have been having no problem urinating. It was real nice to actually be able to go on demand at any time. One night I went to empty my bladder, had a mild urge. But...nothing happened! I thought that was pretty weird, maybe a few hours of sleep and go in he morning. About 3 in the morning I had definite urgency, but still no joy. I decided I had better wake up my wife and have her take me to the ER. That was a good call, but I should have gone before I even went to bed. My advise is, if you can't go when you think you should, get to the ER like you are having a heart attack. By the time I got to the ER, I was in a LOT of discomfort. By the time they ultrasounded my bladder to see if I was faking it, I was in pain, and by the time the doctor finally decided to come visit, I was in agony. And by the time the doctor repeated the ultra sound, I was ready to jam a large bore needle through the through the wall of my bladder to relieve the pressure. I was pretty irate about all of the delays to what was, in hindsight, a pretty critical situation. Anyway, I finally got a catheter, got relief, and was off to see my urologist early Monday morning. He used a cystoscope to look for the issue and found nodules in the neck of the bladder where the urethra is located. He suspects that there is possibly a tumor of some sort in the neck of the bladder. I suspect I finally found my errant metastasis. He says surgery is the next step so they can biopsy the nodules and at which time they will also remove them. Surgery is scheduled and done. He says that upon closer examination that the nodules were scarring probably as a result of the radiation therapy. The biopsies confirm his diagnosis and I am told to move on. So, a bad experience but a good outcome. The unpleasant episode in the ER apparently stretched my bladder, or damaged the nerves, or both. For the next six months bladder control is bad, bladder spasms are frequent, and my urinary flow has never returned to its post surgical splendor. Now, almost a year after what they called bladder retention, my bladder is becomming somewhat compliant with normal life again. Still not working great, but tolerable finally. My recommendation is, if you need to go but can't, get to the ER immediately, not later. That is serious stuff.
Back to my routine, in February of 2022 I have a new oncologist specializing in chemotherapy. He repeats my PSA and it has fallen to 0.132, so he wonders why I have come to see him I think. Actually, he is pretty upbeat about the lower level, and he isn't nearly as concerned about these extremely low PSA levels. He want to continue active surveillance and will see me again in 3 months. In June of 2022 my PSA has popped back up to 0.160 which is higher than 3 months before, but lower than 6 months before. He is a little perplexed, saying that usually when there is a metastasis, that the PSA trends up a lot faster. He hesitates to put me back on Androgen Deprivation Treatment (ADT) because, in his words, we would have a bunch of side effects of that which is worse than the disease at this point. He explains that when my PSA get up to between 2 and 4, we will need to make some decisions, but that at the rate my disease is progressing, that may be a long time. He advise is to keep up the 3 month worry cycle and try to relax.
And that is where I am today. The reason updates have been few and far between isn't because I don't think about it all of the time, I still think about it a lot. Mostly I reside in a state of confusion. They don't seem to know what is happening, so they downplay my worries. I don't have any answers to my questions, I am now in the long term wait and see. Other friends who were diagnosed because I was diagnosed and they got worried, have all had undetectable PSA levels after their various procedures. I definitely didn't draw the short straw, but I definitely didn't draw the long one either. I will try to update more regularly, but not much of interest happens in this phase. So, until next time, good luck in all of your treatments. We can get through this together.
At my six-month follow-up appointment in December of 2022, my PSA had a spike up to 0.299. The medical oncologist is unconcerned (a bit too unconcerned for my liking). He says that there is really nothing he will do as far as treatment goes until my PSA goes to 2.0. I am somewhat nervous about waiting until the metastasis gets worse before doing anything, but he is adamant that I am worrying needlessly. I am wondering whether perhaps I should return to MD Anderson for evaluation as I felt they were more aggressive in looking for metastatic lesions. I decide to wait one more visit before making that decision, since my PSA has been up, down, and sideways at this particular junction. Even my paranoid mind is having trouble seeing a distinct trend, but this last jump definitely has me on edge.
Six months later, I am now in June of 2023. I am celebrating my 4th year of survival post radiation. Yay, me! My PSA this month was 0.794, more than double my last value of 0.299. A quick calculation in my mind comes up with a doubling time of about 110 days. I wonder if the increase is linear (doubtful) or logarithmic (seems likely). If I extrapolate linearly, I will be around 2.0 in April of 2024. If I extrapolate a log curve my brain gets tied in a knot, but the number will be much higher. I look for literature on new scans to bring to my Medical Oncologist’s attention. Earlier I mentioned the Fluciclovine PET scan that was ordered before I had radiation therapy. It was leading edge then and boasted a success rate of 60% at locating the errant cells. Now PSMA (Prostate Specific Membrane Antigen) is showing upwards of 80% detection rates. It is said to be effective at PSA levels above 0.2 (check) but some sources indicate that the test has better detection rates above 1.0. When I go to my appointment my doctor comes right out and suggests a PSMA scan without me even bringing it up. I get an opportunity to be a compliant patient and agree, and as a bonus my researching the exact treatment he recommends allows me to ask smart questions and appear well informed. I wonder if I should wait 2 months, at which time I should be over 1.0 if the progression is simply linear. My doctor doesn't feel there is a reason to rush, but I want to find an answer as early in the progression as possible. My next update will be after the PSMA PET Scan, at which time I can tell what it was like and what, if anything, they find. I am hopeful that perhaps I will finally get a definitive answer as I am tired of wondering when the other shoe will fall.
Time for my annual update. Time flies when having this much fun. Spoiler alert! This last year has been a trial, so I may not be as chipper as I have been in previous updates.
After my last update, I spent a lot of time wondering if my Oncologist was being aggressive enough. He certainly wasn't as aggressive as I wanted him to be. His advice so far has remained the same; wait until my PSA reaches 2.0 and we will make some decisions. As a physician, I really liked the man, his demeanor and his communications. He was a medical oncologist with many published articles to his name and many studies he was co-sponsoring. However, most of his interests seemed to revolve around leukemia, not prostate cancer. After a long discussion with my wife, whose counsel I take seriously since she has been a nurse for 44 years now, I decided to move my care back to MD Anderson where I can see an Genitourinary Oncologist who more or less specializes in my condition. My previous experience with MDA was positive, they were very aggressive and attuned to early diagnosis and treatment.
08/18/2023: I am visiting MDA for the second first time, and they are all about starting from square one. After my new initial visit, I am back in the well-oiled machine that is the only way to describe MDA.
08/31/2023: I meet my new Medical Oncologist. Wow, he is young. It brings to mind an old TV Series called Doogie Howser, M.D. OK, maybe he isn't that young, but he is younger than my children and only slightly older than my oldest grandchild. He orders a bunch of lab work, and my PSA is now 1.8. I guess I wound up waiting until it almost reached 2.0 after all. Maybe I owe my previous oncologist an apology. I am immediately scheduled for a PSMA Scan (Prostate Specific Membrane Antigen MRI Scan). I guess it is the latest and greatest tool for locating errant metastasis.
09/01/2023: The PSMA scan is rather easy, I'm not particularly claustrophobic, but I'm still glad when it is over. They did use contrast media, but I've never before had any reaction to that and I didn't this time either. When the Radiation Oncologist contacts me with the results, I am informed that I am the proud owner of not 1, but two baby bone lesions. One resides on the right scapula (shoulder blade) and one on the 4th rib on the right on the inside surface near the lungs. Although I knew academically that I had a metastasis, up until this point it was all academic. Everyone knew something was amiss, but nobody could figure out what. It was just a wait and worry time. I thought that was too stressful. Now I had entered a new phase of my diagnosis, and I was not happy to be here. I knew that my prognosis had just taken a nosedive. A word of advice if it isn't already too late...never ask Google what the survival statistics are for your particular diagnosis. Trust me, you don't really want to know no matter how strong you think you are. Focus yourself on surviving regardless of what any other patient may or may not have experienced. Do what you can to increase your own odds.
09/18/2023: I have a biopsy of the bone lesion on my shoulder. They would like to biopsy the rib lesion but I am told that they would need to do it through a scope in my R lung and biopsy through the lung membrane to reach it. They feel the risk vs reward is too high and decide to settle for a biopsy of the scapula and assume both lesions are derived from the same source. I agree. The procedure is apparently done under full anesthesia, which is OK with me since I seem to handle anesthesia well. After the procedure I am feeling fine. I mean really, really fine. It seems they gave me some Fentanyl as part of the anesthesia. That is some good stuff. I can see why it is so addictive.
10/06/2024: I get a 3-month Lupron Shot which will be repeated in 3 months, and I am placed on Abiraterone (Zytiga) 500 mg twice daily and 5 mg of Prednisone every morning for 6 months. Thank God I have a pharmacy plan on my Medicare, that Zytiga is expensive even with Medicare paying 80%
10/20/2023: I have an appointment with my Medical Oncologist to learn what my treatment plan will be. The only problem is, I am sick. I feel as though I am constipated but nothing happens. Horror stories run through my mind, maybe a metastasis has formed in my intestines, a lot of "what ifs" dance through my head. I go to see my PC physician and expect him to tell me to eat more fiber and take a laxative. Instead, he examines me, pushes around on my belly, and hits my knee with a rubber mallet. When he is done, he tells me he thinks I need to go immediately to the hospital ER and have an abdominal ultrasound. He tells me that he thinks he can feel my gall bladder under my ribs. He says he has never actually felt one like that before, but he will bet me a steak dinner that my gall bladder needs to be removed. That was out of left field, and I took him up on that bet and headed towards the ER. One hour later he calls me back and tells me my gallbladder was indeed positive and did I want him to schedule a surgeon locally. I had nothing against the local surgeon in this one-horse town, but I had friends in the city that practiced surgery, so I gave him the name and phone number of a general surgeon I had known personally for years. Twenty minutes later, my friend called me and asked if I had had dinner yet. I told him I had eaten a light meal. He said that I needed to be in surgery first thing in the morning. I told him I had to be at MDA first thing in the morning to set up for radiation treatments. His response was to cancel that, insisting that I would not make it that far before I would need an ambulance. So I took a detour, and the next morning I got my gall bladder removed. The good news was it wasn't cancerous. The bad news was it was about the size of a grapefruit and ready to go necrotic. In hindsight, after removal, I felt 5 years younger. I guess it was toxic or something. When it rains, it pours.
10/27/2023: I finally get scheduled for a simulation of radiation therapy on my two bone lesions. The radio oncologist feels certain that he can zap both tumors without burning a hole in my right lung. I get fitted with a thermoplastic radiotherapy mask. They placed me on the table and covered my upper torso with a wet plastic netting material that hardens as it dries. Then they heated the mask and it hardened, making a hard plastic body mold that has tiny holes to breathe through. I could see a little bit of what was happening around me, but not much. Then they run a bunch of test X-rays and MRI scans to take measurements I suppose. After that I was released until the actual run in two weeks. Thiat gave them time to develop the radiation plan, the angles and the doses, I guess.
11/13/2023-11/14/2023: Radiation therapy was scheduled and boy, what a trip that was. As I may have mentioned before, I am not particularly prone to claustrophobia. I can relax anywhere, anytime. Or so I thought. I climb back onto the gurney, and they bring out the mask they made at my previous visit. It wasn't soft and pliable any longer; it was hard as a rock. They put the mask over my upper torso, and then to my surprise they drew it down tight to the table. Very tight, as in there was no way to even open my eyes or blink. Then they put me in an X-ray machine and lined up the mask with markers they had determined previously. Meanwhile I sat idle for perhaps 10 minutes that felt like 30 minutes in total silence. Just as I was wondering if they had all gone to lunch and forgot about me, they X-Rayed again to make sure they were aligned properly then pulled me out and I waited another really long 10 minutes while they checked all their calculations and alignment points one last time. Then they slid me into the radiotherapy machine for the real deal. They shot the lesion on my scapula for perhaps 30 minutes from 10 or 12 different angles, but it felt like hours. I was on the verge of going insane at that point. Then they pulled me out and I THOUGHT I was done. It turned out I was only done with the scapular lesion. They put me back through the entire process again getting ready for the rib lesion and then another 30 minutes of radiation, all the while I am screaming inside my head. When it was over, I literally crawled off the table. When I came back to my senses, they said everything had gone well and that the Radio Oncologist would meet with me the next day before round two. I did not see how I could possibly do another round of radiation. When I saw the radiology oncologist, I pleaded with him to loosen the mask some, and to either play some music and/or interact with me during the procedure so I would know how much time remained. The mask the first day had been so tight it had given me a severe headache. He agreed to loosen the mask slightly and told the radiologist to not use the forehead strap cinches. Then it all started again with round two. Round two went better as the techs made it a point to talk me through everything and loosening the forehead straps was a tremendous help. They should know that silence is the worst part of being strapped down and unable to move. Still, after I was done, I am pretty sue I had PTSD. I was shaking from head to toe and crying like a baby. Perhaps I was crying in relief that I was done, but that was one day I hope not to have to repeat ever again. Something deep inside me, though, knows the chances are high that I will. Next time will have to involve a tranquilizer or anesthesia, I hope.
11/30/2023: I visit my Medical Oncologist after missing my last appointment. He orders a bunch of lab work. Apparently, Lupron made my Low T into near zero T, and the Zytiga made it absolutely zero T. However, I am also told that Zytiga suppresses cortisol also, hence the Prednisone to bring that back up. It also suppresses my estradiol (estrogen) to zero. My fasting glucose went to 165 and my Hgb A1C to 6.4. My doctor says that is a temporary effect of the Zytiga and that this should all return to normal after I get off the cemo. My testosterone level is lower than any woman's, my estrogen is lower than a post-menopausal woman's, and now I am, at least temporarily, a diabetic. Life is good. The doctor says that I should continue my exercise program if I can in order to keep my bones healthy. He also wants me to see a cardiologist after I get a biopsy on my bone lesions because Zytiga also screws up the heart. Of course it does.
01/04/2024: Happy New Year to me! I meet with the Cardiologist that specializes in mitigating the damage done by Zytiga therapy. He is running a study, and I am now enrolled. All I must do is exercise four days a week with load bearing weights and walk 7,500 steps a day. They gave me a spiffy new Fitbit and told me to wear it at all times for the next six months. That sounds like fun...not! Oh, well, I have been exercising anyway, so I plan to just stay with my routine. The routine I had established was prior to Zytiga. Carrying on with it while dealing with a Testosterone of zero will probably be a challenge. My doctor then pulls up a copy of my PSMA scan and shows me where I have developed a calcified nodule in the Left Anterior Descending artery right at the bend where it is hard to get to. That artery is commonly referred to as the LAD, and the slang term for it is the widow maker. He explains that the calcified lesion is irreversible and there is really nothing short of a stint or a bypass to correct it. Due to it's location, I will probably have a bypass somewhere in my future. Perhaps 5-7 years down the road. I'll take 5-7 years. I hope I am around to need that bypass. He says the actual size of the calcification appears larger than it probably is. Since the PSMA scan isn't really designed to picture the heart, the beating of the heart puts the plaque in a different place each time a picture was taken. He wants me to have a specialized CT Angiogram, where the picture is synchronized with my ECG so that the picture is taken in the same relative position each time. He says this procedure is much better than a heart catheterization, which is the only other option. I am all about non-invasive. I am apprehensive about being placed in an MRI machine again. He says this procedure won't take very long though, so we set it up.
04/17/2024: PSMA Scan Post Chemo shows that PSMA avid osseous lesions in the right scapula and right 4th rib have resolved and there are no other lesions noted anywhere else. So far. My Testosterone is still zero, as is my PSA. My oncologist is hopeful that we have successfully resolved this bout of metastatic lesions. He is somewhat more guarded about insinuating that I am cured or that there will not be future lesions. He says that until we see the Testosterone come back up to my version of normal that we really don't know for sure that something else won't make itself known. The goal is to have a normal (for me) Testosterone and a zero PSA. If my Testosterone rises and my PSA again begins to manifest, then we start over again. For now, he rescinds the Zytiga therapy, and the prednisone, and says I don't need another Lupron shot at this time. He says I should start to feel a lot better, but in truth I have not been feeling bad. I have managed to keep up my exercise routine throughout the treatments. But for now, I look forward to getting my hormones back.
05/02/2024: CT Angiogram Day. The Angiogram went quick. The report showed a 25% blockage of my LAD, a couple of other calcifications we didn't know about but that were too small to assess. My Calcium score is 149, which sounds kind of bad. My ascending aorta is mildly dilated, and there is fluid in the pericardial recesses. I'm not sure what the significance of all of that is until I see my cardiologist next month.
Today is July 2, 2024. Almost a year has passed since I got my metastatic diagnosis. Am I cured? I won't know for another few months or years. My journey continues. After getting off of Zytiga and Lupron and Prednisone I thought I would feel somehow normal, and by normal, I mean better. So far, the last two months have been notable only for aches, pains, and discomfort that I never experienced while on the hormonal suppressants. My back has developed a "hitch" right below the right rib (T12-L1 vertebral area) that is not as debilitating as it was at first but it has persisted for over a month. My mind wonders if the lesion they said was gone is back, or maybe a new one is taking root. My mind always assumes the worst. My hands have become arthritic, my knees, especially my right knee, has become tricky. My energy levels have crashed, and my desire to workout is no longer there. I still manage to make myself go, but my routine is spotty at best. My muscles are weak. I had thought that getting off the Chemo would be a blessing but so far it has not been. That depresses me, which is yet another sympton since I am not a person that has ever had to deal with that. I feel older than 70 years old, which I turned in April. Later this month I have appointments with my care team and perhaps I will get some answers then. I will update this again once something changes.
For now, I just keep on keeping on.
Mike's e-mail address is: mgmccoy AT gvec.net (replace "AT" with "@")
