I was diagnosed with mucinous cancer of the prostate in January 2013 following a TURP for urinary retention. The diagnosis is rare and I have yet to find anyone else with it. [There is one other man who shares this diagnosis - Tom Randall - who was diagnosed in 2006.] There were meetings with several doctors before finding a team who could formulate a treatment plan. (Meanwhile I had several heart attacks and received a cardiac stent in February). I'm currently treated with Casodex and Eligard in an attempt to shrink the tumor. It was too large (11 cm.) to attempt surgery or radiation without risking damage to the bladder or rectum. I really didn't have too many options. A second and third opinion confirmed the treatment plan.
The side effects of the treatment have been minimal so far; I've been fortunate in that respect. There are hot flashes but I had more intense ones when taking Avodart. The worst part is the fatigue--I never know when I'm going to be overwhelmingly tired. It's different from any other tiredness I've felt before. The doctors tell me it could be due to the heart attack or the cancer treatment or, most likely, a combination of both.
My PSA was 3.83 at the time of the diagnosis but has fallen to 0.11 with the hormone therapy. I feel that the tumor has shrunk because sitting is more comfortable. That may be wishful thinking. Next scan is in July followed by meeting with a team of doctors to discuss next steps. It's about the time as I finish cardio therapy. I'll post an update.
I've finished cardiac rehab and hit all my marks in the exit stress test. Now, it's time to focus on the cancer treatments. I've learned that the cancer is stage 4 but seems to be confined to the pelvic region so surgery remains an option but with only a small chance of a cure. The hormone therapy seems to have kept the cancer from spreading to the bones or lungs. However, the mass is still larger than 7 cm so I am not a candidate for radiation therapy. There's no evidence that chemotherapy works on this kind of tumor so the doctors do not want to try it due to the side effects. The cardiologist says my heart is strong enough for the surgery, which surprised him as much as anyone else but my tests results were all terrific. The surgery will remove the prostate, probably remove the bladder, and may remove the rectum and result in radiation of the pelvis while I'm open. It's a heroic surgery, lasting perhaps as long as 10 hours. I'm trying to arrange a second opinion from the Cleveland Clinic but I don't seem to have many options available. I continue to try and follow a heart healthy diet and exercise regularly because it will help recovery from the surgery.
Last July, we decided to continue the ADT as long as it was working. The proposed surgery (pelvic exenteration) was heroic and gruesome and there was some hope that continued ADT would pave the way for a less drastic measure. In late 2013, the PSA had started rising at an accelerated rate so there was no point in avoiding the surgery. My heart was much stronger by then and the mass had shrunk enough that the docs didn't think the surgery would need to be so extensive. They still were unable to get a good picture but I agreed to the surgery.
In March 2014, I underwent the surgery. It was not a complete pelvic exenteration but was still heroic surgery. It lasted more than 12 hours and consisted of removing the prostate, the bladder, a thin sliver of the rectum, and some pelvic muscle. I ended up with a permanent urostomy and temporary colostomy. Part of the rectum was removed to provide better margins. Recovery was very painful and lengthy with several complications, including AFIB and MRSE. I was hospitalized for 14 days instead of 5 and was very weak and had balance problems. So, I went to a nursing home that is locally known for its PT and OT program. At this point, I was barely able to bring myself to touch the ostomies, let alone change them.
36 hours later, I was transported back to the hospital due to a bleeding ulcer. More surgery to close the ulcer. I spent 5 days in ICU and then moved to a room for a couple of days. Afterwards, I returned to the nursing home for 4 more weeks of therapy. While there, I got plenty of rest, lots of therapy, and some of the worst food known to mankind. I had friends sneak in coffee and ice cream as part of my own therapy program. I progressed from a wheelchair to a walker; after my balance returned to normal, I was able to walk without any assistence.
The pathology after the prostatectomy was different than that of January 2013. The Gleason score had moved to 9 (4+5) from 8. 26 lymph nodes were removed and there were no signs of cancer. The percentage invasion increased from 50% to 82% in just 15 months.
Because I was given a urostomy, I had none of the problems with incontinence that so many men report. The urine just flows--constantly, so I have to empty the bag every 1-2 hours. I finally found the combination of appliances that made the colostomy and urostomy manageable. There was a lot of experimentation and several phone calls to local WOCNs.
The worst part of recovery for me was the fatigue and weakness. Every little movement seemed to take an enormous amount of effort. Over time, things got better and I returned to work 8 weeks after the prostatectomy/cystectomy. Being away from work convinced me that I needed to retire; it was time to leave and work was no longer important to me. I retired at the end of June and haven't looked back.
I continue to have problems with ED but the docs assure me they expect functionality to return. (It's not really "problems with ED", it's the lack of any sensation.) For now, though, not even a twinge but there's signs of returning libido; the testosterone, at its lowest, was 15. However, it's early in the recovery and I expect things to approve.
I was able to return to everything I had been doing before the diagnosis (if you don't count sex and sitting on the toilet). I needed more sleep but was no longer napping regularly. About 8 weeks after the surgery, I returned to the gym but took things very slowly. After 5 weeks, I had returned to the level I had reached prior to the surgery.
Now, for the next surgery. I had mentioned that the colostomy was temporary. In July, I had surgery to reverse it. I'm still in recovery with the usual expectations--fatigue and more pain than I expected. There seems to be more pain than from the prostatectomy/colostomy but I'm home and taking care of myself. The wound is large (3 x 4 x 7 cm) and requires cleaning and packing twice a day. The docs assure me that I should be back to normal after 4 weeks, which is a good thing because I expect to leave for a 2-week vacation in Bulgaria and Greece at the end of September. So, I'll have a little time to get back to the gym and see where I end up.
I had the colostomy take down on July 21, 2014 but recovery was very slow. At the end of August, the surgery sites opened up and a sticky fluid oozed out. A trip to the ER revealed I had MRSA from the March prostatectomy. I had more surgery and began to feel better immediately.
As for now, it's 18 months since the prostate and bladder were removed. I've retired and adapted to a more leisurely life. I highly recommend retirement! The lasting effects are ED and fatigue. I can no longer have an erection without an injection. I had thought that giving myself a shot in the penis would be hell but it turns out to be no big deal. It's just another thing I've had to adapt to. My testosterone is only about 115 (240-800 is normal) and the docs think it will probably not improve substantially. The thought of giving myself an injection is far worse than the actual event. The erections are not what they used to be but they are serviceable. But, then, I'm not twenty years old any longer. And, sex is no longer spontaneous since the meds have to be thawed first.
The fatigue continues to be a problem. I nap for about 30-60 minutes every day. Exercise helps a little but I've been limited due to recurrent infections and fever. I've changed diet to plant-based diet with occasional chicken and fish and that helps too. Even so, the fatigue is not nearly as bad as it was a year ago. With all of this, I've gained about 35 lbs and that doesn't help the fatigue.
My last update was quite a while ago. Here's a summary:
2013 Jan. Diagnosed with Stage IV mucinous cancer, Gleason 8 (4+4), involvement is 50% PSA=3.83. Cancer had invaded the bladder but no lymph invasion and no bone metastases.
2013 Jan.--June. 8 trips to the ER with new Foley catheter. 14 weeks of first half of 2013 included me wearing the catheter. The invasion of the bladder kept causing expulsion of large blood clots with subsequent blockage.
2013 Feb. Major heart attack; received stents. Started hormone therapy to shrink tumor to manageable size. Heart too weak for prostatectomy.
2013 Apr.--July. Cardiac rehab and continued with hormone therapy. Tumor shrank from 11 cm to 7 cm. PSA = 0.11
2013 July-2014 March. Continued hormone therapy. Doctors at Johns Hopkins and Cleveland Clinic recommend treating symptoms and focusing on quality of life. They recommended no surgery and no radiation. In late 2013, PSA started increasing rapidly.
2014 March. Because of recommendation of staff at the James (Ohio State University), I agreed to a prostatectomy/cystectomy with removal of small sliver of rectum. 13 hours surgery. Received temporary colostomy and permanent urostomy. Many complications; I was released 2 weeks aftdr surgery but so weak I needed to go to rehab facility for therapy. New pathology is Gleason 9 (5+4) with 82% involvement. I learned after the surgery that the normal protocol would have indicated no surgery but a surgeon and oncologist got creative and determined surgery was worth the risk. But, due to lack of lymph involvement and distant mets, they though surgery might give me a few good years. Due to their success with me, they did two similar surgeries in the next 24 months and have received funding to develop a more refined protocol. They tell me I'm a "miracle" and a "landmark".
2014 April. Bleeding ulcer took me back to the hospital 36 hours after leaving. Hemoglobin was down to 4 and BP was undetectable. Ulcer was fixed and I received 6 units of blood. Also diagnosed with MRSE. After a week, back to the rehab facility. I spent 4 weeks in rehab before going home. Stopped hormone therapy.
2014 July. Colostomy takedown (AKA colostomy reversal) but recovery was slow. I felt weak and generally just awful for several weeks.
2014 Aug. Incisions for prostatectomy/cystectomy open and viscous fluid starts oozing out. Back to the ER where I waited for 8 hours before seeing a doctor, meanwhile dripping fluid around the waiting room and soaking my clothes with it. More surgery because the infection (MRSA) was about 7-8 cm inside my belly. Docs say I was septic. I began feeling much better in a couple of days.
Mid-2015. I finally began feeling "human" again and stopped taking so many naps. No treatment for cancer during this time.
2015 July-2016 June. PSA began doubling, going from undetectable to 0.14 in period of a year. Doctors recommended IMRT radiation; still no lymph involvement and no bone metastases. Hormone therapy (Eligard and Casodex) resumed.
2016 July-August. 33 radiation treatments completed. Lots of fatigue and some diarrhea. PSA at end of treatment is 0.04 (which is considered "undetectable" with the lab that is being used). We can only hope and pray that the reason for the decrease in PSA is due to radaition and not just due to the hormone therapy. I am likely to be on the hormone therapy for 2 years.
Now, I'm busy reclaiming my life. I take very few naps now and can eat just about anything I'd like without diarrhea. The big hurdle I'm facing is the unintentional gain of 50 pounds over the last year. I've started eating more healthily and have resumed light exercise.
My last update was optimistic but not so much now. I'm still on hormone therapy but my PSA has started to increase, having doubled since mid-August 2017. In November 2016, I was diagnosed with a UTI but the antibiotic was not as effective as expected. Therefore, I spent Christmas Day in the ER but the antibiotic worked this time.
However, the fatigue continued to increase and I lost my appetite. I've lost 35 pounds but I've been significantly overweight so the loss was good. Beginning in April, my blood tests began showing abnormalities. My hemoglobin dropped quite a bit and my kidney numbers revealed some kidney problems. In June, July, and August, I was given transfusions to beef up the hemoglobin but it kept dropping. I was admitted to the hospital 3 times this summer due to the anemia, kidney problems, and multiple hernias. I also spent four weeks in a rehab center. Seems I now also have problems with blood pressure that drops rapidly. The docs think all of this is related to side effects of cancer treatments but not the cancer itself.
In any case, I'm scheduled for all-day surgery on Nov. 17 with four surgical teams. The lead surgeon told me that, on a scale from 1-10, this surgery is a 9. I have a peristomal hernia that was cutting off urine and bowel movement. I also have 2-1/2 ventral hernias that will be fixed during the surgery. (I'm not sure what 1/2 hernia is but it's on my list of questions.) Recovery will take 4-6 weeks barring any complications.
I'm close to freaking out about the surgery. The docs have no idea if the surgery will improve the anemia and kidney functions. Looks like I continue to be in for a long haul. I've been sick for about 5 years and I'm sick and tired of being sick and tired. The fatigue is overwhelming.
Rich's e-mail address is: greener1081 AT gmail.com (replace "AT" with "@")