I am a member of an HMO (health maintenance organization). In late 2006, went to PCP (primary-care physician) with frequent night toilet trips. The DRE (Digital Rectal Examination) was slightly hard, PSA was 8.9. Recommended urologist. Dec 2006, Urologist found same thing, PSA tests were 10 to 12, from Jan to April 2007. Some problems with latex allergy, did not have biopsy until May 07. All 12 cores had cancer, 5% to 70%, Gleason Score 8-9.
Started Casodex for two weeks, then first Lupron Depot 3 month shot. Saw this urologist two more times before they quit the HMO. They were hard to contact to answer questions. So, for two months before EBRT (External Beam Radiation Treatment), I was not in communication with anyone. At this time I had haemorrhoids, but no-one talked to me about the frequent night toilet trips or the haemorrhoids. The radiation oncologist was a contractor.
Radiation started Sept 4 and would continue daily until Oct 26. After 3 weeks of pelvic cavity radiation, I could not take the pain of going to the toilet, both 1 & 2. The rad oncologist did not want to manage the pain. I showed him e-mails, where my PCP and I had contacted urology, and they said they could not help. I said I quit. He said what do you need. I said I cannot sleep, and the pain going to the toilet was to much. He gave me Valium and Vicodin. It took two Valium and six Vicodin for several weeks to manage the pain.
By mid October we were just targeting the prostate, and was able to cut back to one Valium and four Vicodin. I took this combo until Nov 19 and then was able to stop taking pain meds. It was recommended that I not have surgery for the haemorrhoids for three months after radiation treatment. So, waited until Feb 5, 08 for the haemorrhoid operation, both PPK (stapled hemorrhoidectomy) and surgery.
Things did not go well, I was now bowel incontinent. Since I still had voiding problems, I had a cystoscopy and urethra dilation May 8. At the hospital, there was blood in the urine. Was told to drink plenty of water. By the time we got home, about 7pm, had had 14 glasses of water, had to go, wife went to the guest bath and I went to the master bathroom. From clear across the house she heard me cry out. When she got to me I was sobbing from the pain, with blood dripping out. This happened four more times, on the floor, crying, even two Vicodin did not touch the pain. Just past midnight I called the hospital, got the advice nurse, she woke up a urologist, he said drink more water!!!!!!
Here it is June 08, still have five night trips to toilet, still have rectal incontinence, 8-9 toilet trips/day for bowel movements. Am trying to figure out how to use prescription sleep aids. Can not use them more than 2 times/week, they loose their potency if taken several days in a row.
On June 19, saw a new urologist, asked why I was seeing him, I said that communication with Honolulu urology dept was not very good, he looked at my record, and said "I can't take this case". I said it was difficult to fly to Honolulu and wanted to change. He said that he was calling his boss (my urologist!) and left the room. I did not handle that very well. Took the longest time for him to come back, I was an emotional wreck. The two urologist's agreed that the new one would manage my cancer, the boss (my urologist) would manage my voiding problems.
At this time, I'm still looking for that healing process that will allow me to be more normal. Every once-in-a-while I do see a brief, blurred light at the end of the tunnel.
Later: One of my urologists (the one managing my cancer) has stopped my 3 month Lupron Depot shots. I have been on LD for one year. My PSA is less than 0.05 and has been for the last six months. My Testosterone is now 0.19, (normal is 2.4 to 8.27).
There has also been an improvement in my sex life. I still can not feel anything, a little pain perhaps, but, we are healing very slowly.
August 25, 2008: Saw my cancer managing urologist last week. (I have two urologists, flow & cancer.) My PSA = < 0.5, Testosterone = 0.15 ng/ml (range 2.4 to 8.27). My last 3 month Lupron Depot shot was early April 2008. It has been one year since EBRT, 7 months since hemorrhoidectomy.
I still have BM incontenence, several times/week. I still have blood, blood clots, several times/week. I can hold my bladder to 340 cc now, but still am up to void at night if I drink 5 or more glasses of water during the day. Usually try to drink 4 glasses before 1 am. I have had a liver scan (HBV) and abdomen scan (kidney, bladder & prostate) this passed couple of weeks. I have a consult next month with a nephrologist to work on what my kidneys are doing at night when they are suppose to cut back on urine production.
My hips still hurt, especially after hiking 8 miles Saturday with a local group. Last night got 8 hours of sleep, first time in over a year. Had been averaging 5.5 hrs or less for the past year.
Sept 5, 2008. Saw a Gastroenterology Dr. yesterday for a Flex-Sig. I have been having some incontinence with BM's since the EBRT & hemorrhoidectomy. I have 2 to 3 normal BM's, then several gas releases that have fecal/blood/mucus several more times/day. What we saw in the area just above the rectum was areas of many-many small blood vessels, which is where the blood is coming from. The Dr. said that he sees about 10% of EBRT patients with this problem. Also that the full rectum feeling after a BM is from damaged nerves, and it is just a feeling, nothing is there.
The Doc started cauterizing these blood vessels with an Argon laser (big bucks) and said that it could take a couple of visits to stop the bleeding. It was a very painful (the gas) and messy trip home (fly Oahu to Hawaii). Sitting on the pot did not move the gas. Walking did, then the hunt for a lu to clean up the mess. No answer as to why the many BM's & incontinence, however, it probably has to do with the damaged nerves, mucus production, & blood. Just 30 minutes before the procedure, I had washed out the lower part of the colon, but you could still see large amounts of mucus in the lower gut. I also have nerve damage to the muscles of the anus, which causes the fecal incontinence. For the Flex-Sig, I needed two enemas, the first was ok, the second, I did not make it from the exam room to the bathroom. What a mess. Did not feel very good about that.
Last week I admitted that I needed help and have made an appointment with Behavioral Health which is not until next month :( There are just too many restrictions on my life right now, I need help.
The testosterone level is 0.7 (scale of 2.5 to ?) and the PSA is still undetectable at < 0.05. So, there are no feelings down there, but it is ready to use when the feelings come back. In Sept & October there was some pain associated with an erection. But that seems to have passed.
Things sorta got out of hand before my first therapy session in October. After talking to a friend, he suggested that I get help right now. The therapy session was 2 weeks away and my wife had taken me to ER after an uncontrolled crying session. It was a Saturday night, right after a football game, so ER was full of in-pain students. After 3 hrs of waiting, could not get an estimate of when we would see a doc, I had stopped crying, so we left without being treated.
I had lost all hope, I though that my God had abandoned me, the only person I could connect to was Sandy. She was the last of my stability.
Next week, I called my PCP, in tears, and pleaded for help, she gave me a prescription for an SSRI (Prozac), and cautioned me that I could have some bad thoughts (like hurting myself) when starting this medication. For the first 10 days, nothing changed, could not sleep, still had uncontrolled crying spells (Sandy sat me through these).
Then, I had a night where I was only up to void once! Then, a week of sleep, finally after two years, I was getting good sleep! Oh-Joy!!!
The BHS Psychiatrist suggested that my anxiety had limited my kidney production during the day, and at night when I relaxed, the kidneys ramped up production so that I was voiding (200 to 350 cc) every 1 to 2 hours at night …i.e. no deep or dream sleep (needed for healing).
So, all of a sudden, my continuous sadness abated, my ability to sleep through the night returned, and I found that by not eating bread, I did not have the explosive toilet trips …. WOW!
Three less problems … I started feeling much better.
As I go through the process of therapy, I'm discovering that how I react to various types of information is based on my data base of past experience. The information can be real or imagined. You have a broad view of what information means. It could be a stop sign, or walking into a radiation treatment session. Last year, in the third week of EBRT, I associated walking into the rad treatment room with the painful #1 & #2 toilet trips, so on top of being irradiated, I was compounding my fears and making the situation much worse than it probably was. What ever is triggering your response could be a fantasy of something that will happen in the near future. The information could be real or fantasy (to you it is always real).
For the present, the initial elation of getting sleep has come way down, and the past three weeks have been more like you would associate with depression. Just saw my PCP today (12/22/2008), and she wants me to double my SSRI dose to 20 mg/day. Hope this helps. I still have more physical constraints on my life than I can handle, so the SSRI meds and therapy will probably continue for a year. Meanwhile, Sandy and I are working on getting our personal lives back together for when the testosterone returns to normal.
My last test result for Jan 09 was PSA = 0.12 & Testosterone = 2.03, so the effects of the last ADT shot are beginning to dissipate after ten months (last Lupron Depot shot April 08). I am waking up with more erections, there is some pain associated with too much rubbing, still no release. Sandy & I have been practicing some intimate routines, which we both enjoy.
The therapy sessions this past couple of months have had problems, first session in Feb, she was sick, second session, the baby (her baby, one month early) beat me to the appointment. Her replacement (flown over from Honolulu) is the Chief Clinical Psychologist. But, the replacement would only be here once/week. Since the case load was large, that would mean only getting one session/month, then after 3 months, returning to the first therapist, what a mix up. I had one session with the Chief, gave her a hard time about timely sessions and elected to change therapists, and will start driving to Hilo for weekly sessions on 3/27. Therapy has helped my relationship with Sandy, where before, I would let my emotions, and filters affect what I could talk about. Now we can talk about most everything. She told me that I was on her watch to make sure that I would not hurt myself, early on when my world fell apart. As to my fears about the medical community, I have made no progress. Sandy & I do practice being happy, practice, practice, and it does help, much more fun to be happy than sad.
The mind medication, at higher doses, was very bad for my sinuses, set me back over two months (my fears of the medical community). I am on a low dose that I can tolerate. Am finally able to do some farm work on the coffee trees, the weeds got way out of control. Am able to put in 3 to 4 hrs/day, pruning, hoeing, fertilizing, and mowing, plus the little things needed to keep a place/home running.
When the little things go right, it sure helps.
Our 98 Buick was needing parts, and the rubber door seals were leaking air & water, which did not help my sinuses. On a trip to Hilo to get parts, the car dealer parts shop was closed, so we looked at some cars, a salesman came out, asked what we wanted, gave him a price range, and he said what about that one, just came in today. A 2000 Caddy, 60k miles, looked new, smelled new, all the rubber seals looked new, gave them the 98 Buick + $9,600 and drove the Caddy home, WOW! Nice car, 4.6 liter, Northstar, 32 valve four cams chain driven timing, V8, really hugs the road, plenty of power, lots of bells & whistles, 17 to 18 mpg, we love it, any reason at all and we are on the road. Had a few Jaguars & Rovers, but never had a Caddy before.
Life is better, still feels like a house of cards, but it is definitely a big improvement since last summer.
Trip to Oahu for second argon laser treatment of rectum ulcer. WOW, I could see healthy tissue where the first laser treatment had been performed. Just a few more bleeding areas around the good tissue to cauterize. Still have blood & blood clots, but less often.
The therapy sessions are not going so well. Still have issues I'm not able to accept and BHS does not seem to help. Deep down, I know it is up to me and my thoughts, but so difficult. Sandy is getting better at suggestions. We do practice being happy, still much better than being sad.
I made contact with a different (same HMO) urologist who is also an oncologist. He has set me up with PSA every month. This month PSA=0.15, still very acceptable. He also agrees that acting on just the PSA is not so good, considering past side effects of ADT, and will work to find some other test to provide a clearer indication that the PCa is returning.
The complications in my life are decreasing. I have stopped therapy & drugs for depression/anxiety. I can see that my thoughts were not helping the situation and have been successful about living in the present. A year ago, my life was very complicated and frustrating with a number of physical limitations which were from conditions prior to prostate cancer and its medical treatment. Given my poor response to ADT and EBRT, I felt overwhelmed by what I was facing. I still have the original food & air problems, but the cancer treatment problems are much less and becoming more & more manageable. In all of my searching about what would happen next and when it would happen, no one was able to predict what did actually happen. Our intimate life has returned to normal, and hopefully will remain so until ADT becomes a forced choice.
At this time I am choosing to go the watchful waiting route. If necessary, I would argue to try adjust the amount of ADT given to a value that would control the cancer, yet reduce my personal side effects. I owe this line of thought to Terry, and thank you Terry for sharing your experience and insightful guidance.
Joe 67 Hamakua Coast.
Last month I learned that I have radiation damage to my bladder; the cysto showed a clump of red areas which the urologist says is associated with EBRT/IMRT. This is two years after EBRT. Each time I've had a cysto and urethra dilation to enlarge a perineum stricture, the post cysto pain has been severe. This time the doc gave me the choice of a catheter, and I accepted. The pain was not as bad but lasted about 3 days. Each time I sat down or had a BM, it set off a spasm of pain contractions. After the Lidocaine wore off I could not ride in a car, as each little bounce set me off. Rolled up a towel and bent it into a horse shoe to sit on, helped a lot. The pain spasms were like an orgasm, you could feel them coming, but could not relax or stop the racking spasms.
I had worn shorts for the drive and plane ride to the HMO clinic near Honolulu, so was not prepared for the ride home with a bag strapped to my leg.
For the last 10 months, my PSA has varied from 0.1 to 0.16, so that is definitely good. The oncology and uro docs have not identified a PSA above which, action would be suggested. The thought of going back on ADT is frightening.
As we age, it seems like we find more problems each time we go through a test or procedure. I now have an aneurism on the descending aorta, and peripheral neuropathy in my toes which is beginning to affect the way I walk and exercise.
The urologist has scheduled a minor operation for December 14. She wants to remove a stone that was in the EBRT damaged area and biopsy the tissue below it. I'm hopeful that this is not a tumor and that the biopsy will show nothing but bladder tissue.
I am still practicing meditation each morning. I believe that it is controlling my night voids and blood pressure.
Sandy and I have declared that our coffee picking season is over for this year. We have gotten so much rain, it has been difficult to dry the coffee parchment. It did not rain 6 days in November! We moved into this area as it had a record of being dry, and we are set up to irrigate. We have irrigated perhaps twice this year. At the end of October, we were over 60 inches.
Peace on Earth,
Joe 68 from the Hamakua Coast
June 20, 2010 The rain stopped in April and the weather has been more like it was when we first moved to the Hamakua Coast. Had to start irrigating the coffee again. Thankful that the lower Hamakua Ditch was repaired and has been running for the last two years.
In January 2010 the night voids returned. Meditation did not accomplish what I had hoped. They had not bothered me since October 2009. Why did they return? In February made an appointment for therapy and an evaluation to possibly start medication again. They are understaffed and over worked, two months to see a doctor. So the Appointment was not until April.
In April, the doc called in sick, and the next appointment was in May. Also made an appointment to see a therapist, that was a 7 week wait. Night voids getting worse. Finally saw the doc, he wanted to try one of the newer drugs, but it had sucrose & sugar spheres, and chronic sugar intake is very hard on my sinuses. So, awaiting the next appointments with Behavior Health Services.
The last PSA was very good, 0.09, lowest since it came back from not detectable. So far this year the PSA's have been between 0.1 and 0.16.
The bad news is that in April, this year, it started to be irritating to void the #1 plumbing system. Within two weeks, the pain level had reached 5 after a void and 3 between voids. It feels like the whole urethra is on fire. Within a week I was afraid to use the toilet. At this time I was making 15 to 18 toilet trips/day. Urology could not help and suggested that my PCP schedule a consult with the Pain Clinic. Luckily, a week later I had my four month appt with oncology.
The night before the appointment, voiding pain reach a level 7. He started a pain management program, plus he wanted an MRI to see if anything else was happening down there. Could not get MRI for four weeks (not an emergency). It feels like the #1 system is falling apart. Occasionally I get small amounts of blood after a void. It feels very raw when the flow begins to stop. There is no pain in the bladder, if the urine gets into that first sphincter, it is very difficult to hold it back. The pain is all along the length of the urethra. The first few weeks on pain management were wonderful, no longer afraid to use the toilet.
The EBRT/IMRT was 2.5 years ago, confirmed bladder damage just showed up November 2009. If the good body cells were regenerating, why is this happening? No one seems to know. Urology feels that this type of pain flares, then after a few days, goes away. I wish!
The pain clinic was a consult with one doctor. He took the time to ask around if any other doc's had experience with this problem. No one could help. He did suggest hypnosis and acupuncture. My HMO does not cover these forms of therapy.
Had the MRI June 21. The evaluation indicates no problems with the plumbing, but there are some spots on the spine, so a bone scan is recommended. I think we went through this just after the PCa diagnosis. The oncologist wants to confirm that nothing is happening. So, July will be a busy month.
I know that this is just part of life's difficulties. I blame no one. The cancer treatment in all probability gave me more years to share with Sandy.
Hamakua Coast, I love it,
June 2011: Aloha Terry - Hard to believe that a year has passed since I last updated this experience. I have been on pain management since April 2010. The blood and blood clots from the urethra and bladder continued to get worse through 2010. It was clear that this is delayed radiation damage to soft tissue. The uro-doc agrees and in October 2010 she installed a Supra-Pubic Catheter (SPC) to completely bypass the urethra where there is an open wound that is not healing and getting worse.
By December the blood and clots continue are bad. We discuss my options. She feels that the bladder is so badly damaged that it would be best to go directly from the kidneys to an outside bag, such as an uro-ostomy. After much research (including YANANOW contacts) I find that Hyper Baric Oxygen Treatment (HBOT) has an 80% recovery rate for this type of soft tissue damage. Making daily trips to the nearest HBOT facility presents some severe problems. I found a mild HBOT home unit that operates at 4 psi/90% O2. The uro-doc writes a prescription and submits it to my HMO.
They decline as it is still an experimental/unproven treatment. My wife and I decide to invest in a home unit. The unit delivery is delayed 7seven weeks and I'm really getting worried about the blood loss. The reason for an uro-ostomy is uncontrolled blood loss. After 100 hours of mild HBOT use, we can see a trend toward less bleeding and fewer clots. Unfortunately, the SPC is prone to UTI's (Urinary Tract Infections) and I start to get them every 3 to 4 weeks, no matter how careful I am, they still happen. At first, we don't catch them very fast and there are several days of severe pain.
The last UTI, I was able to start the anti-biotics on the second day of symptoms and I only had a half day of uncontrolled urine flow and pain. The pain management program does not help the initial pain surge, one to two minutes. But it stops the continuing pain that can last 20 to 30 minutes after a urethra leak.
July 4, 2011: I have over 230 hours of "Dives" and clearly we have a good trend toward healing. I feel like I've been able to recover my life. I'm sure that if I would have chosen the uro-ostomy back in December 2010, the pain would have stopped at that time. Who knows, with this treatment, perhaps the bladder will heal sufficiently to eliminate bladder cancer. It is odd that there has never been any bladder pain, even when there are so many blood clots that the catheter gets plugged (have worked our way up to a 20 Foley which has not plugged). My episodes of depression have become very short and usually are caused by UTI's. Both anti-biotics and pain management give me constipation, so when I'm able to stop one or the other, I get UTI's for a day or so. Even UTI's can be good!!!
Happy Independence Day 2011,
July 5, 2011: In March of this year I was diagnosed with Gynecomastia. This is a swelling, tenderness, and sometimes painful condition of my left breast. The only factor that this condition seems to correlate to is the return of my Testosterone to normal levels. The doc does not have an explanation for this condition as it is usually related to breast feeding. One of the professionals I see suggested holding raw cabbage leaves to the affected breast. Sort of amazing, but it does seem to help. I can't do this all the time because I get heat blisters from the device that holds the cabbage in place.
Over the past few months I've been trying to get my HMO to perform a uro-ostomy (often referred to as a urostomy) . As a result they have given me several tests, one of which, a nuclear bone scan showed an anomaly in the pelvic bone. This week I was on Oahu again to get a detailed MRI as a follow up to the bone scan. Initial discussions with a uro-oncologist included several anomalies in the pelvic bone and hip ball joint. He said that about 25% of metastatic prostate cancer patients have a very low PSA.
Yesterday I got a copy of the MRI report. No metastatic cancer. The anomalies were bone damage caused by the EBRT/IMRT 4.5 years ago. My PSA continues to be low, 0.34. Testosterone is just in the low normal range. A blood panel test showed my white blood cell count to be about ½ normal, no explanation.
I am continuing to ask for a uro-ostomy as the mild HBOT (Hyperbaric Oxygen Therapy) has not stopped the daily occasional pain from urine leakage into the urethra, which can be sever. Pain management does work for these random events. I don't start pain management until the pain cycle happens frequently. My last UTI (Urinary Tract Infection) was bad. Took way too much pain meds, which was not helping. UTIs happen once per one or two months. I can only stop the pain cycle by starting antibiotics.
A lot has happened since my last update:
Right breast diagnosed with Gynecomastia.
After 3 months of testing my uro doc said that a uro-diversion (ostomy) was too risky and did not want to perform the operation. So in late April she referred me to a uro-oncologist (same dept, different doctor).
More testing. Big disagreement about what was causing the pain. By June, the UTI's were happening every two weeks. Just finish a round of antibiotics, pain meds, withdrawal, and would need to start over again. Not getting much done on the coffee farm.
Finally in mid July, the uro-oncology doc tested the bladder in OR. It would not hold 50 cc & the prostatic urethra was clearly damaged. Yes, he agreed to remove the bladder & prostate. Was on the operating table July 23.
I am now pain free after 2+ years. The toilet is no longer a place of fear, anxiety, & pain. There are some other minor pains after surgery, nothing compared to before. The 6 hour operation was completed with no complications. The bladder was small hard & inflexible. The prostatic urethra was badly damaged. There was no cancer in the prostate or bladder. The surgeon had other surgeons ready to "chisel the prostate away from the rectum", but that was not needed.
I now have an external bladder.
Some of the things that were not clear to me about this kind of surgery were:
- Day before only water, started taking antibiotics 6 tablets/2 hours. After third set, you sorta loose it, very messy. Then the bowel prep. Hunger.
- 5:30 am day of surgery, disinfectant wipe whole body, epidermal to the spine before you go under.
- Wake up, greet wife as they take you to your hospital room that evening.
- It took 7 days before I passed gas, nothing by mouth until that painful event of farting. Started clear broth that day. Before that, food was that bag hanging from the post, breakfast, lunch & dinner.
- Next day food, after that long even hospital food was good.
- Discharged day 9. I had been walking in the hospital, but needed a day of rest at home.
We are now home (hospital is on the island of Oahu in Honolulu) on the Big Island of Hawaii. I continued walking, made it around the coffee trees. No lifting of anything for 5 weeks. Prior to surgery, I had been doing lots of exercise, off road bicycle 6 miles/week, floor routines, lots of stomach crunches.
It is possible to have surgery after EBRT/IMRT.
It has been a month since the hospital discharge. I am slowly getting use to the uro-ostomy appliance. There are problems with blisters near & under the adhesive that holds the urine bag to my skin. We seem to be getting that under control. Still not comfortable with the skin irritation.
When we got home, I called 5 different ostomy manufactures. They sent me samples. After evaluating these products, I agree with choice of appliances that they use in the hospital.
Thanks for your support.
Ongoing checkup by oncologist was normal. The PSA prior to the operation was 0.62 ng/ml. The PSA test for this visit was 0.62 ng/ml, so the removed prostate was not producing any PSA. Other blood test results have not changed. Both red & white counts have remained about 20 to 25% below normal since PCa was diagnosed.
I have not used any pain meds since the operation. The external bladder seems like a part of me and I am getting 7 to 10 days between appliance changes. The skin irritation around the appliance is minor. I am able to do farm work and continue to exercise. I've got my life back and am doing more volunteer work as well as keeping up with the coffee farm. I'm also ready to finish this house we built and moved into ten years ago.
I am thankful to be alive,
My oncology appointment is every six months & there are no regular appointments with urology. The PSA is still rising. The next three values are 0.87 ng/ml (9-2013), 1.12 (10-2013), & 1.68 (3-2014). I see the oncologist April 10. Since there was no detectable cancer in the bladder or prostate, I don't know where or what the PSA increase means.
Currently, my life is very busy maintaining our coffee farm, volunteer work, and trying to finish a 10 year old house which has more & more routine maintenance problems. Both Sandy & I are basically happy and if we only had a year to live, there would be no rush to change our current lives. We both handle our "old age" problems with smiles, realizing that our bodies can't keep up with what we could accomplish 5 or 10 years ago.
Yes, we did loose some years of our lives to cancer treatment and have stopped trying to make up for what we were not able to accomplish. We both accept where we are, we are active in our community and are trying to live lives that help other people whenever the opportunity arises.
I also believe that we were lucky to have a uro-oncologist, even though we disagreed with what the problem was, that helped me get back to a life without serious cancer/treatment pain. I also think that regular exercise was and is a major help in facing very difficult times. Having a life partner is also right up there at the top for survivorship.
Hang in there,
[23 July 2014 - Sadly, Bill G wrote to let us know that Joe Mac passed away in Hawaii about a week ago. He had been living well right up until a massive brain hemorrhage caught him unexpectedly while at home. He and his wife were involved in the community in many ways so I know she'll have good support going forward. Thanks to all on this site who were also a part of Joe's community of friends.]