I was diagnosed with prostate cancer in September 2017. My age at diagnosis was almost 77. I live with my wife in Orange County, California. My basic state of health was fairly good. I am not overweight--about 160 pounds and about 5'-9" height--and walk briskly about three miles every weekday. I have coronary artery disease and had five stents placed in heart arteries in mid 2016. I have been under treatment for benign prostatic hyperplasia (BPH) since my early 40's, which has consisted of a series of alpha blockers such as tamsulosin, etc. plus finasteride. My number of night-time urinations, which is a good indicator of the severity of BPH-related urinary difficulty, was typically 5.
My PSA had been running about 3. In my 2012 checkup, my PSA had increased to 4; and in 2013, it had increased to 6. Prostate biopsy probably should have been done, but was not recommended. We later learned that this was due to a new Medicare policy at the time (and possibly still) discouraging prostate biopsies. My PSA remained fairly constant for the next several years. Then, in September 2017, a lump was discovered. PSA at that time was about 5. A biopsy showed that it was Gleason score 8. Based on a bone scan and MRI, the cancer was diagnosed as stage 2C, which, my urologist explained, meant cancer was probably still contained in the prostate but had possibly broken through the prostate's outer membrane. Because we were away for the month of October on a cruise, we did not receive these results until mid-November.
We were very much torn between our urge to act quickly against this cancer, which seemed close to becoming stage 3, versus our desire to thoroughly evaluate all treatment options. A counselor at the Hoag Hospital prostate cancer center, who was very knowledgeable, advised me that prostate cancer, even Gleason 8, is very slow in developing; and a month or two would be unlikely to make any significant difference. She advised that we take the time needed to be very confident in our choice of treatment and treatment provider.
In meeting with various treatment centers, we found it useful to bring our own copies of the biopsy, MRI and bone scan reports and images. Each treatment center requires their own copies of these items in advance of the meeting. My urologist generally sent the required information to each treatment center; but such documents tend to get lost in each clinic's information system, and it is best to bring backup copies to each meeting.
Treatment options recommended for my case consisted basically of surgical removal of the prostate (prostatectomy) or radiation plus androgen deprivation therapy (ADT). Three types of radiation were recommended for our consideration - conventional external beam radiation therapy (EBRT), proton therapy (EBRT using proton radiation instead of conventional radiation), and high dose rate brachytherapy (HDRB). There wais also an advanced version of EBRT called stereotactic body radiation (SBRT), which employs multiple radiation beams in a computer-designed pattern that was thought to be more effective and efficient but at that time had much less track record than conventional EBRT and was thus still considered to be a developing treatment method.
In researching these options. It was very helpful to have the assistance of my daughter, who happens to be very skilled at using the Internet to determine best sources and harvesting the pertinent information to support our decision-making. She found YANA to be very helpful. For most people, not having a strong research assistant, I would recommend that you learn as much as possible from helpful websites such as the Prostate Cancer Foundation and YANA and then seek support from local prostate cancer treatment centers, particularly those affiliated with highly respected hospitals, in your region. In my case, Hoag Hospital's prostate cancer center was a very helpful source of guidance and information. Also, we found Sloan-Kettering in New York to be an excellent information source, especially their extensive database of the success rates of various treatment options and also the numerous studies they have sponsored (hint: the important findings are in the abstract of each paper).
Our first preference was prostatectomy. The first doctor with whom we met regarding this option was confident of a good result. However, in the course of meetings at other treatment centers, we found that more senior urologists with more experience with this particular surgery did not recommend this approach for my case. A major concern was that the surgery might result in serious incontinence, which can be very debilitating. We also learned that, overall, radiation is just as effective as prostatectomy and that approximately 50% of prostatectomies need to be followed up with "clean-up" radiation because surgical margins are not found to be cancer-free. However, for a good candidate, prostatectomy may be the right choice since it has the potential to totally eliminate the problem.
Proton radiation at first seemed very attractive since it is known to have much less risk of significant side effects while also being claimed to be equally as effective as conventional EBRT. However, we soon found out that the major practitioners of proton therapy do not reveal their cumulative results, i.e., their cumulative percentage of successful outcomes. This caused us to rule out proton therapy as a possible treatment option. Hopefully this will change soon and may have already changed. It would be worth checking with Sloan-Kettering about this and also with Mayo Clinic, who seemed to have made a major commitment to proton therapy for prostate cancer.
Two local radiation-based treatment centers had been recommended by my urologist. Both offered EBRT, SBRT and HDRB. The first one we met with quickly ruled out HDRB because my prostate was too large and I was already having substantial urinary difficulty, which HDRB would exacerbate. They recommended either 45 EBRT treatments with 2-3 years ADT or 25 EBRT treatments plus one SBRT treatment with 2-3 years ADT. The second treatment center recommended 25 EBRT treatments plus HDRB with 2-3 years ADT. This treatment center employed high-pressure sales tactics, which was a complete turn-off for us.
One issue that arose during our conversations with the two local treatment centers was the use of SpaceOAR hydrogel technology. This substance, which is highly absorptive of radiation is injected into the space between the prostate and the bowel in order to protect the bowel from radiation and thus enable a stronger dose of radiation to be administered to the prostate. After radiation, the hydrogel is gradually absorbed and eliminated by the body. In considering my case, Hoag Hospital prostate cancer group ordered an advanced type of MRI, called 3T parametric, to assess the possibility that my cancer had gone beyond the prostate membrane and concluded that it most likely had and therefore recommended strongly against the use of SpaceOAR for my case. We also sent this advanced MRI to the Mayo Clinic-Arizona prostate cancer group, and they also recommended strongly against SpaceOAR for my case.
UCLA seemed to be the most advanced prostate cancer treatment center in our region, so we scheduled a meeting with that center. UCLA recommended either 45 EBRT treatments or 5 SBRT treatments with only 4 months of ADT in either case. The shortened ADT course was recommended because of concern about my heart. Although the SBRT option would place me in a research trial, UCLA stated with confidence that the success rate for either of their proposed treatment schemes for cases like mine was about 70%.
My daughter and I had both been researching the treatment options with the main focus being on probability of success, which in our minds meant the PSA remaining low and steady for 10-15 years, for stage-2, Gleason-8 cases. Our research included accessing pertinent articles and reports via the Internet and meetings/phone calls with treatment centers in the region. Based on information in the literature, we concluded that the best option seemed to be a combination of HDRB with EBRT plus 2-3 years of ADT, which one very convincing study found to have a 90% success rate for aggressive prostate cancers such as mine. In comparing this 90% success rate to the 70% success rate for UCLA's proposed treatment scheme, I looked at it in terms of the risk of failure, i.e., 10% versus 30%--less by a factor of three!
In further discussions with Hoag Hospital's prostate cancer center, who had been very helpful to me, I learned that they had excellent experience with a certain HDRB radiologist who had recently joined the staff at UCLA's prostate cancer treatment center. We then returned to UCLA and met with this doctor, and he was in agreement with our finding that the HDRB-EBRT-ADT scheme that we identified offered the best option for success and furthermore did not feel that the risk of serious after effects, given the size of my prostate and the extent of my urinary difficulties, was too high. UCLA did however continue to advise against 2-3 years of ADT in view of my heart condition. My heart specialist was actually less concerned than UCLA about the ADT and advised me to do whatever was best to cure the cancer. UCLA finally agreed to a one-year course of ADT. The ADT began immediately (January 5, 2018) with a hip shot of Lupron.
On February 7, I returned to UCLA for a procedure to prepare me for the radiation. This was performed by the HDRB doctor. First, several gold markers were placed at certain locations in my prostate. The next step was the injection of the SpaceOAR hydrogel. This doctor, unlike those that we met with at Hoag Hospital and Mayo Clinic, had apparently concluded that the cancer had not gone beyond the prostate. During the procedure, I asked him about this; and he took a long look via the ultrasound visualization being used for the procedure and stated that the cancer appeared to be confined to the prostate. He then injected the hydrogel. The third step in the procedure was a CT scan, which was to be used for detailed planning of the radiation.
The EBRT consisted of 25 radiation treatments--one treatment per weekday over five weeks beginning mid February and ending late March. This was supervised by a different doctor, who specializes in EBRT. The HDRB was done April 2, 2019. At that point, the HDRB doctor took over my case, Also, a consulting urologist had been added to the team to manage my urination problems, which had become severe during the latter part of the EBRT.
For most cases, the EBRT and HDRB are essentially painless procedures. However, for men suffering from BPH, increased urinary difficulty and some associated discomfort is to be expected since the radiation causes swelling of the prostate and makes urination even more difficult. In my case, I had to have a Foley catheter installed, which entails an in-dwelling urinary catheter connected either to a collection bag strapped to the leg or to a night-time collection bag located beside the bed. This was needed during the last week or two of EBRT and again for about two months following the HDRB. This was followed by intermittent self catheterization for several more months until my urine retention returned to an acceptable level. Foley catheterization is not too bad. I was able to engage in most of my normal activities. There is, however, a problem with urinary tract infections (UTIs), of which I had several. These infections were difficult to cure since they now resist all but a few antibiotics and are extremely miserable in terms of intense itching and burning in the urethra. Intermittent catheterization is a little uncomfortable but quite tolerable and, most importantly, did not cause any UTIs. It is important to be aware that there are two types of intermittent catheters--silicone and vinyl--and also a variety of tips. In my case, I was prescribed silicone catheters with standard tips, which proved to be the wrong type for my badly constricted urethra and led to a serious puncture wound that required a trip to the ER and three weeks of Foley catheterization to heal. I then requested vinyl catheters with "coude" tips, which are designed for a badly constricted urethra; and these worked much better.
The HDRB was also far from painless in my case. However, I believe that this was mainly due to an error that occurred in the targeting scan done February 7. Basically, the nurse had forgotten to administer water to me so that my bladder would be full at the time of the scan. At the beginning of the EBRT treatments, I was informed that my bladder indeed was much larger than it was at the time of the targeting scan and was thus receiving more radiation than it should have. I then experienced a terrific amount of pain during the HDRB radiation and also a lot of bleeding in my (over-radiated) bladder. Another hospital error was that although I was in terrible pain following the HDRB radiation and bleeding profusely in my bladder with blood clots threatening to plug my Foley catheter, they sent me to the Observation Ward, where the nurses had no idea what was going on or what to do, and left me there in great pain for quite some time. However, upon reaching the Medical Floor, care was very good and the pain and bleeding were brought under control. I was kept in the hospital for two more days and even needed a transfusion, both of which are highly unusual for this type of radiation.
Here is a cautionary note to keep in mind when undergoing procedures and treatments: Know as much as you can about what is to be done and how it is to be done, read the instructions that you are given, make a handy list of key points, some details may matter a lot. Do not place total trust in nurses and technicians. Only your doctor has a real stake in the outcome. Although some nurses and technicians may be truly professional, others may function more like hourly workers. If anything seems not right, make sure you or a companion resolve your concern directly with your doctor, and do not take the word of staff members unless they acknowledge and correct the error or do have a good explanation that totally satisfies you. For example, I should have contacted the doctor February 7 when I realized that water had not been given to me until just before the targeting scan. It is, of course, helpful to have someone with you to watch for problems, however they cannot be with you the entire time. If possible, avoid being given any drug that will reduce your mental acuity until the doctor arrives and is in full control.
Here is a useful anecdote illustrating the importance of seeking out an experienced doctor before making any important decision: Soon after the HDRB radiation, the UCLA urologist who had been assigned to my case began recommending that I consider a common surgery that is used to improve urination, known as transurethral resection of the prostate (TURP). Since this doctor did not seem to be a very senior member of the UCLA urology staff, we decided to get second and third opinions on this from two urologists at the urology practice near our home, both of whom regularly perform TURP surgeries--one a fairly young doctor and the other a much more experienced doctor. The recommendations that we received from these two doctors were starkly different. The younger doctor was in full agreement with the UCLA urologist while the more experienced doctor cautioned strongly against the proposed surgery, saying that I should wait at least a year for natural healing to occur before considering TURP surgery because of the high risk that TURP will result in serious incontinence in post-radiation cases. We then requested a fourth opinion from a more senior urologist at UCLA, who told us exactly the same thing as the more senior doctor at our local urology practice. At that point, we requested that the more senior UCLA urologist replace the younger urologist as the consulting urologist on my case.
The ADT ended in January 2019--i.e., the last three-month shot was given in October 2018. ADT bothers many men for various reasons, but did not affect me very much. In fact, at the end of the course, I suggested that the ADT be extended since the normal practice with the treatment scheme that I had been given is 2-3 years. The HDRB doctor gave this some serious thought, but decided not to extend the ADT. This marked the end of my EBRT/HDRB/ADT cancer treatment.
The bottom line is this: Over all, I am back to normal after a few difficult months and would definitely choose the same treatment scheme again. It was well worth the extra pain and difficulties to know in the end that I had received the best treatment available for my particular case. Furthermore, I believe that the mistakes made by hospital staff made the pain and urinary difficulties that I experienced much worse than would normally be the case.
ADT freezes the cancer growth by depriving it of testosterone, which this type of cancer needs for growth. Once the ADT ended, the care plan became a series of follow-up appointments with the HDRB doctor every three months to monitor the progress of the testosterone and PSA levels in my blood versus time, which informs the doctor of whether or not the cancer is still present and growing. The first follow-up appointment was in April.
April 22, 2019 -- Follow-up appointments with the HDRB doctor and the urologist: My PSA and testosterone were both undetectable and urine retention was at an acceptable level.
July 18, 2019 -- Follow-up appointment with the HDRB doctor: My PSA was still undetectable, but the testosterone was now 160 ng/dL. The normal range of testosterone is about 300 - 1000 ng/dL.
October 14, 2019 -- Follow-up appointments with the HDRB doctor and the urologist: My PSA was still undetectable, and the testosterone was now 164 ng/dL. Both doctors were very pleased with the PSA still being undetectable, as, of course were my wife and I. The urologist commented that my testosterone level would probably be very slow in returning to normal.
Follow-up appointment with the HDRB doctor: My PSA is still undetectable, and the testosterone is now 175 ng/dL. The undetectable PSA was, of course, welcome news. The doctor said that it was now time to change my appointment frequency from quarterly to semi-annual (more good news). My urination has now become noticeably weaker, which is not unexpected since the ADT is known to improve urination in BPH cases and I am now one year post-ADT. This is not actually an after-effect of the treatment since my urination is still no worse than it was before the treatment. I am also having occasional bowel urgency, which also is not unexpected (bowel problems show up as late as several years post-HDRB). It now seems likely that my testosterone level will remain quite low. At our age, living with low testosterone is not a problem for either my wife or myself. It doesn't seem to have any effect on me other than a virtual absence of sex drive.
My July 2020 blood test showed PSA was still below the detection limit (0.1), so that was great news on that front once again. Some incontinence problems have begun to appear. This is in the form of diminished ability to hold back urine flow when I have the urge to urinate. With my long history of benign prostate hyperplasia (BPH), I have had the sudden-urge problem for a long time, so the diminished control is the new thing. My cancer doctor (the surgeon who performed the brachytherapy) did not seem surprised or show any concern about this since it is not really a significant problem for me. My testosterone still seems low, however, the blood lab (Quest) forgot to measure it this time. Since I am almost 80 and have five stents in heart arteries, I don't really worry about testosterone.
January 14, 2020 semi-annual checkup. PSA undetectable, testosterone still low at 180. Some urge incontinence has developed since last checkup. Also some stress incontinence. However, with my long history of BPH, this may not be related to the radiation. I just have to plan ahead or wear a diaper to avoid leakage, which I have learned to do.
Sorry, I just submitted an update, but entered the wrong year. Please change the 2020 to 2021. Thank you
PSA is still non-detectable. YAY!!!
PSA test January 2022 showed .05 ng/mL, which my doctor says is essentially a non-detect. Testosterone still low at 178 ng/dL.
I have not had any additional treatment related to prostate cancer since the radiation and am very thankful that the cancer is still in remission or may have been totally eliminated.
Beginning last year (2022), I began to experience increased urgency regarding need to urinate. This may be expected since I have a long history of benign prostate hyperplasia (BPH), but the intense radiation that I went through may be a contributing factor. Will discuss with my urologist in July and update this sometime after that.
I have increasing frequency and urgency of urination. I do not know to what extent this may be due to the radiation or is just the expected result of the enlarged prostate as I age. One undesirable result of the cancer treatment strategy that I chose is that various options for treating my urinary problems, such as TURP, UroLift, etc. are now closed to me because of the radiation therapies that I had. Also, I now have serious bone loss (osteoporosis) in my spine, which is uncommon in males and is known to be aggravated by ADT therapy.
