In a standard blood test for something else, my PSA came back at 4.2. My GP's physicians assistant (PA) was concerned that it had risen from 3.8 in January of this year. He put in a referral for a urologist and I made the appointment. I had seen my GP the morning of the appointment but didn't feel there was anything to be concerned about. Meeting the urologist that afternoon he expressed the same feelings. But since I was there, he did a DRE. I could feel him pause and finally say he felt a lump on the right side of my prostate. In an instant my world changed. We made an appointment for the biospy pending the referral and I drove home. I cried like a baby.
Because I have a blood clotting disorder, I take Warfarin for the rest of my life. To have a biopsy I have to stop taking that, shot myself up with Lovenox and usually a day or two before any cutting into my body am on nothing. My blood level dropped to 1.0 (my therapeutic range is 2.5 - 3.5) and I was amazed I woke up that morning. I had a pulmonary embolism (PE) that started in my heart in 2007 while taking 10 mg. a day. I had dropped they told me to 1.1.
The biopsy actually went fine. There was no bleeding or as the tech said, you clotters are very efficient at stopping blood flow.. A week late on a visit to another doctor, I found that she could access my records and the report. It said that I tested positive on all three cores on the right, was negative on the left. I was in shock and literally drifted aimlessly until the Thursday meeting with the urologist.
He noted that I was not a candidate for surgery and recommended radiation giving me a referral to a radiation oncologist. End of story. So I started reading up on all this and decided that I did want to at least talk to a surgeon who in fact confirmed the original DRE. In meeting him he too agreed that I was not a good candidate for surgery but it wasn't until I spoke to the radiation oncologist that I realized it wasn't my blood holding everyone back, though it WAS a consideration, but the Gleason 8. At this point referrals have been given but there is no bone scan or MRI. The Radiation oncologist explained why the reluctance and on reading many of the stories here, radiation was still required. There is still too great a chance of cancer being left behind.
So I meet with my hematologist / oncologist Monday to get his take on all this. I am also getting a referral to the City Of Hope for a second opinion. The radiation oncologist has a 3 prong attack:
- Lupon for 2 - 3 years (I will become of one the Terminator's girly men)
- 25 courses of radiation two months after starting Lupon
- Seeds in the prostate.
Other than the seeds there is no cutting or need to get off meds. However, not sure the long term affect is that great. Am now starting several books on PC starting with a book by Jay S. Cohen, M.D. called PROSTATE CANCER BREAKTHROUGHS. We will see.
Met with my hematologist / oncologist yesterday and we discussed the tests, the readings and what to do next. Because I have a severe clotting issue, surgery for me is dangerous. I would have to go off my drugs and while I might be saved from cancer die from a clot. I have had two PE's so I know what I am talking about.
He recommended hormone therapy regardless of what I decide. With a Gleason of 8, they want to cut off the hormones to the cancer and hopefully shrink it as well. My frustration in getting tests is beginning to wear on me. Finally got the referral for the bone scan but not before Dec. 2., the MRI people, after 5 minutes, were still helping other people. I hung up and will try again later.
Everything points to hormone and radiation treatment. When I ever get the tests we will know for sure.
It seems that after the biopsy and the confirmation that I have cancer, I've entered a place where time stands still. First getting the referrals for the bone scan, and MRI took a week. Then getting a time for those tests is long and frustrating. Going to my hematologist/oncologist, he seemed to sense my frustration and while ruling out surgery due to my being a bleeder on meds or a clotter without, and. Gleason of 8he could see no reason not to start part one of my treatment...hormone therapy. I started Casodex, 50 mg a day a week ago and got my first shot of Lupron this week. So far I don't notice any changes though I am urging friends to keep their large and lovely catalogs and from I've read here may need a visit to the "King of Bras" soon.
My bone scan is Monday, the MRI a week later and a second opinion at The City of Hope after that.
What is so frustrating is that I feel nothing different. The colitis that developed over the summer has been far more frustrating. My hematologist doesn't realize how happy he made me.
It's been awhile since I've written because in many ways, the time between diagnosis and decision took time, then once made the wait for surgery itself.
I didn't want surgery. I didn't want to be cut, suffer the long term pain of that. However, the more I read and I encourage you to read as well, I wasn't so sure. I became messenger boy taking tests, retrieving results and taking to other doctors. Sometimes the wrong tests, other times not aware I was to take a test. (There was NO current blood work the morning of my surgery so they did that first).
They started the hormone treatment and by the day of my second shot, 12-28-2013, I had the worst case of acne ever seen. It looked like the pox and I refused to leave the house. As I write this today, 1-29-14, I still have blotches on my face.
The bone scan was clear, but ultimately the MRI was iffy. My GP, sensing my frustration gave me a referral to The City of Hope and we met with their surgeon, Dr. Satterthwaite. He went through the procedure and made sense. He said I can give you all kinds of statistics but I can't give you yours.
He knew all my doctors by first name, promised to call them for a heads up, and said his staff would get referrals and set operating date. We saw him Friday evening; by noon Monday ALL was arranged. It was a relief. SOMEONE was in charge. And gently they followed up just in case.
While I had a DVD of the MRI my urologist wouldn't give me the report till I met with him, Monday afternoon after meeting the surgeon Friday. He was SO ADAMANT about no surgery I left shook. My doctors were now for or against with no middle ground. I had already planned to meet my son and we had a long frank discussion of my options. Finally, he noted that if I felt confident about the surgeon and City of Hope hires no losers, that was probably my best option.
I had made an appointment already with the radiation oncologist who would be treating me for the next day. My wife and I got into a heated discussion about all these visits (never back down-it's your body). I explained I wanted to find EVERY option I had. Of course, he too was against surgery, cited statistics heard a 100 times. But, when he finally admitted that no one would truly know about my cancer until they had it, I interrupted him with "thank you." He looked at me and I told him, "You just helped me make my decision. I'm going to have surgery."
For the first time in weeks I felt calm, truly calm. The hardest part was waiting. I had several problems that could have delayed me, a drug reaction, sinusitis, but each email from surgeon said we were still good to go.
The surgeon said no more hormones though the hot flashes continue. I pre-registered for surgery two weeks before so on January 23rd we arrived at 6 am, they had me prepped by 7 and I woke up around 2 that afternoon in my room. Using robotics I have 5 holes, four are glued shut, one was used a day for drainage. By late afternoon I was walking WITH NO PAIN. Discomfort but manageable. You can't leave till you fart and by 2 am the next day I was bloated. They me a little something and an hour later I farted myself awake. I laughed and felt SO good.
Even though it was jello, clear broth and apple juice the next morning anything beat ice chips. However, I found they put your stomach to sleep and no food won't stress it. I survived.
The catheter is a drag but they gave me lessons on care. The surgeon removed the drainage bag and said I could go whenever I wanted. They didn't push us out and after a nap we left by early afternoon.
I never dreamed it would be this easy. I've had flu's that were harder to live with. I've had a few tense moments when my urine got darker but emails and calls explained what was happening. I wondered does he ever sleep? I still can't sleep more than a few hours at a time.
He gave me a short review of the pathology report that showed lymph nodes and seminal vesicles were clear though there was a small breakout on the impacted side. We go in today for catheter removal and next steps. PSA tests will become common but I have a new urologist, one I implicitly trust.
READ READ READ! Get as many opinions as you can. Talk to every doctor, several times if needed. Find someone to guide you through the process. You are too shell shocked to do it alone.
This being 2-1-15 my surgery was just over a year ago. 2014 was a terrible medical year for me and towards the end of 2014 it got worse daily.
Before each PSA test I am extremely anxious. While my readings have been undetectable I wait for the other shoe to drop. There appeared to be leakage from the capsule so we wait. Other than the incontinence, it hasn't been too bad. I have a one mile walking bladder which sucks unless I come home, go and then able to go farther. I still wear a light pad each day
I know men want to know about sex after treatment but I have none. After the disaster in November where I had successful spinal surgery and then two strokes later that day 5 hours apart then two weeks later viral pneumonia where my body literally shut down, each day I wake up is a good day.
My my advice after diagnosis is read, read, read. I have a blood clotting issue that makes surgery risky. I chose it anyway. Not a day of pain using robotics. I may need radiation they say. We will cross that bridge when we get to it.
Life has been hectic and crazy for a year now. I received an email from someone asking how I was. I had forgotten the site but felt I needed to answer his question and update now.
During a routine PSA test in June of 2015 the first detectable PSA showed I was .3. I had a meeting with my urologist and he highly recommended radiation since the reading was low and most likely more treatable. Another reading in September showed .3 so a referral was made and I had 8 weeks, 5 days a week of radiation. My radiologist was confident this would eradicate the cancer finally but the first reading showed it stubbornly at .3. Another reading a month after the treatment showed it edging down to .2. It continues to work and can take up to a year to become undetectable again. We shall see. I kept going to the gym for six weeks but then diarrhea hit and I became afraid to go very far. Luckily I could walk to my daily treatment and come home and nap. Usually I was fine the rest of the day.
During this I initiated a divorce and moved to Palm Springs, CA where I currently live. Because of this move I had to change all my doctors and this has not gone smoothly. I feel good for a man of 70 though I have not gotten back any normal erection function. Cialis taken daily didn't help.
I notice that my last report was in February 2016 shortly after I moved to Palm Springs, CA. A PSA in March and September 2016 showed that my PSA remained undetectible. I will be going to my doctor again this month (March) to learn the results of a blood test taken in February 2017.
At my last meeting with my urologist/oncologist he pointed out that since I have had both my prostate removed ( January 2014) and 8 weeks of radiation (Sept-Nov 2015) if it should come back, there is little in the way of treatment left. He suggested hormones. I had a terrible acne reaction to the Casodex and refuse to take that again and that leaves Lupron, something I had been given once before the surgery.
I completely unable to get an erection without a shot. It works for about 4 hours but is somewhat painful especially when wearing clothes. There is the pump option but since I am on blood thinners for a blood condition that causes blood clots, that is not an option for me. However, it is better to wake up everyday than the other alternative which has caused pulmonary embolisms that nearly killed me twice.
I will try to remember to report after my doctors visit later this month.
Nothing really new to report. My April blood test showed no PSA. The lingering effects are that I leak now and then. Depends on how much fluid I intake ... which here in the desert if a lot. Alcohol also seems to have an effect. However, I feel fine and have been able to travel to Hong Kong twice this year. Going from San Francisco is a 15-hour flight.
There is nothing much to report. At the last checkup my PSA was still undetectible in March, about 2-1/2 years cancer free and counting. I have a doctor's visit and PSA test later this month.
My recent PSA test shows that I am still undetectable at about 3 years from by radiation treatment. No news for me is good news.
This is November 1, 2019 and I just met with my Urologist and I still remain undetectible. Because of the nerve damage I have not much control over and lack of an erection and in the 5 years since the operation, then radiation 18 months later, bladder control has become an issue. "Depends" and I have become friends often at night as I might wake up in the middle of the night all wet. During the day I started wearing padded underwear that catches the occasional leaking. The other side effect is that when it's time to go, IT'S TIME TO GO. Once the flow is started I can't stop and wait until the end.
Health wise I am doing well and able to take long trips as I just returned from China which is a 12-14 hour flight there and 10-12 hour flight back.
I have noticed for several years now that I am having incontience issues. I first bought pads to line underwear and then during more troubled times I needed Depends for men. Not all the time at first but increasingly. I had a kidney stone removed last December, 2021, and the problems seemed to get worse.
My urologist gave me the CAPA Free Diet to follow which pretty much says about the only thing to eat was grass and bark. It hurts to pee and I have little warning when it is time to go.
After many struggles I got a referral for a second opinion and the conclusion was:
1. I had light chain disease, either an infection or cancer of the bone marrow
2. The 8 weeks of radiation in 2015, 18 months after the cancer, returned, were causing the death of the nerves that takes 5 - 10 years to show up. I am in my seventh year.
At this juncture I am not sure what can be done. I read that there is a device that sends electrical charges to nerves around the bladder that is placed inside your body. The battery has a 15 year life and is covered by Medicare. I am waiting for yet another referral and hope that we can alleviate to some extent this issue. It makes it very hard to be very far from home.
When I had my surgery the only options were surgery or radiation along with various medicines that I reacted violently too. I would urge anyone today to consider newer treatments and forego radiation until a last resort. It HAS consequences that may not show up for years.
In December of 2021 I had kidney stone removal and that started the chain of events that led to surgery of January 2023 to remove a blockage in my urethra. I had been leaking more and more until I started to depend on Depends in 2022.
On Thanksgiving day of 2022 I went to Immediate Care as I could not urinate. When they tried to catherer me, they found I had a blockage. Somehow, unknown to me, at times, the urine would flow into the Depends. After the surgery things would improve and then get worse. I had a series of UTI's and my second opinion urologist explained what radiation can do. It can take from 5-10 years to happen, but the radiation that kills the prostrate cancer cells can, as in my case, also kill nerves. I was a 7 years and it was starting. After the surgery didn't make things any better my primary turned me over to Home Health Care and they taught me how to catheter myself as my bladder only empties about 50% each time I urinate. They encourage me to do it at least twice a day, morning and night. I hate it. It makes you pee, but it also makes it hurt to pee for a few hours afterwards. I have little control on urinating and once it starts I have to let it stop itself as I have little control over it. But because it doesn't empty I go more often and go through about 2-3 Depends a day as well.
Catheters and Depends or some form of male diaper will be my routine for the rest of my life.
December 22, 2023 & January 17, 2024 Surgeries. Reprt June 13, 2024
After 13 UTI's in a row and increasing the need to self catheter in order to urinate I was finally told the radiation I received in 2015 had killed the nerves in my bladder, a common occurance I found out. It takes 5-10 years for this to happen and I was at year seven. My PSA remains "0".
The pain in my urethra was common and getting worse it was at times so intense it dropped me to my knees. it seemed worse at night and by December of 2023 my PCP andd urologist convinced me to have a Super pubic catheter. Basically this is a tube inserted through your abdomen directly into your bladder that goes to a bag strapped to your leg. You wear it 24/7 and its changed monthly. You open a spigot in the bag every few hours.
Oddly in daily use it rarely hurts or bothers you. The original surgery creates a hole for a 12 gauge tube. A few weeks later you get it resized larger to lessen it becoming plugged. As easy as the first out patient surgery was, the re-sizing was ... I screamed the whole 5 mintes as the nerve to my urethra ignighted and the pain was overwhelming. It went away soon enough and I returned home soon after.
I returned to the doctors office for the first monthly exchange and while there was little pain they could only replace the 16 gauge with a 14 gauge that has been done now 5 times. Home Health comes to my condo and we exchange it there.
This has made my life so much better. However, I will never swim again because of the tube and bag. You can take showers and pay a bit of attention to the permanent wound. I have had to change my dressing habits as the bag and a nifty sleeve i found on Amazon hangs below the legs of my shorts, especially the emptying spigot, so I have taken to wearing my men's Capri's for a Tommy Bahama look to hide the bag and still keep me cool in Palm Springs, CA where it can be 122 degrees.
As awful as it sounds it is DEFINITELY an improvement over the self catheter. Despite doing it perfectly, as my home nurse watched and agreed, I could not avoid the UTI's. I have had once since and this was because the tube was not positioned correctly and it backed up. Since we realized this I've had few problems. My PSA remains zero (0).
Alan's e-mail address is: awkrug AT gmail.com (replace "AT" with "@")
