Tag Archives: Prostate Cancer

UPDATE: 6-2020

(Some of this update maybe too graphical and upsetting… but it is all in light of my medical situation – apologies)

Well I can say a lot has transpired since my last update in October of last year.  Back then I was starting my Hyperbaric Oxygen Therapy treatment at UCLA.   That was a brutally long process of 40 days.  So that ended at the end of November and I was back home again in December.  Well… then after 5 days of being home, I was at work and shocked that I went to the bathroom and while urinating, I started to urinate a stream of blood.  I was a bit shocked and I called in Marcy to look.  That necessitated a call to my oncologist. He got me in the office within 2 days. 

Initially having “Gross Hematuria” (there is hematuria which is blood in urine you can’t see, and gross hematuria which you can see) is a concern with post cancer treatment patients because of secondary cancers due to radiation. So in lieu of a cystoscopy, which he said I should avoid due to the dysuria (pain) problems I have with my urethra, he ordered a new test called a CXBladder test.  That is a urine test that looks for bladder cancer dna.  The test result can back in about 7 days and it was negative for bladder cancer. Great!  In addition, I had a CT Urogram that looks for any issues from the kidneys down through the ureters to the bladder.  That also came back as good, with just a few cyst in my liver that has been seen before. (By the way, the CXBladder test was not approved by Blue Shield and I got a bill for $2,900.00… Since that time, I have been in a medical fight to say the test was medically necessary as my Oncologist ordered it.  As of this date, it is with the state of California medical review board).

So the end result was that I must have some cystitis (inflammation) issues somewhere in the chain and my body was expelling some blood from that. The normal treatment would be to go to Hyperbaric Oxygen therapy!  Well I just did that so my doc said we should just wait to see if something comes up again. 

FAST FORWARD TO MAY 2020

So I am at home and it is the middle of night… I get up to go pee (I don’t always, but I felt the urge) and behold a very long stream of blood.  I thought shit.. not again! Unlike before where it happened one time, this time I urinated blood for two day. Now what!

Not What You Want To See When You Pee! (Blood and Blood Clots!)

Now it was time to go see a specialist. I discussed it with my oncologist and the next step was to go get a cystoscopy. You know, the one that we were trying to avoid.  I ended up going to see Dr Karim Chamie who is one of the head Urologic Oncologist at UCLA.  Because of the COVID-19 issues, it was easy to get in to see him as there were a lot less patients going in. I was in within the week. 

I had a consultation with him and he ordered another CT Urogram that I had that day.  Again no issues were shown on that scan except they also reported some small kidney stones that may present an issue in the future.  He said we have to do a cystoscopy to look at the urethra and bladder.

It was scheduled for a week later.  In that time, I was urinating streams of blood for about 2 days and then off for 5 days, then 2 days again. So in a way I was looking forward to the cystoscopy. I mean, lets figure this out!

The day of the cystoscopy, Marcy and I went down to UCLA. It was so nice because of COVID-19 that the freeway was clear and instead of an hour and half drive we got there in 50 minutes.  I went into the room and the tech preps me by washing all of my front pelvis down with a betadine solution (you know the orange colored stuff).  Then he draped with me so just my penis was exposed.  Of course I asked Marcy to video the procedure so I can review it again.  (No I’m not showing you the whole video) Then the guy put a small syringe of lidocaine into the opening of my penis to numb the upper portion of my urethra.  It hurt… a lot. He told me to wiggle my toes to take my mind off the pain.  Within about 5 minutes Dr Chamie can in and got right in to using the cystoscope (a “small” flexible tube (Marcy even commented that the tube was a lot bigger than she thought it would be!). Well I could not tell that any lidocaine was working because as the doctor inserted the cystoscope it F’ing hurt. The tech said “wiggle your toes again”!

Most likely due to the irritation I already had in my urethra it hurt a lot! He puts the scope all the way into the bladder and he extracts some urine for testing.  Then he looks around in the bladder and then back out in the urethra.  As you can see with the picture below, the bladder looks good but there was a lot of blood at the “bladder neck” and upper “prostaic” urethra area.  Lots of blood with blood clots.

The Cystoscope that is inserted into urethra
Image of inside my bladder
My Bladder Neck (The bladder neck is a group of muscles that connect the bladder to the urethra. The muscles tighten to hold urine in the bladder, and relax to release it through the urethra).

The entire procedure is about 6 minutes. (Too long!)

After the procedure, he told me: “Good news, your bladder looks really good. No issues there. The bad news is that you have “radiation induced hemorrhagic cystitis” of the bladder neck and upper urethra and there is not much I can do about it now”. He stated that it is a degenerative issue with necrosis (death) of the cells from the radiation and that it was another progressive downward step. He told me that I can come back and see him when it gets worse. I asked “what does worse mean”? He said if I bleed for 5 days or if I get blockages when I urinate. He stated that I was kind of lucky in that if the blood clots were in the bladder I could already be getting lots of blockages, but because they are in the bladder neck and upper urethra areas that the pressure at least gets them pushed out. Probably because I take Flowmax twice a day that also helps.

So that is where I am today… every week or so I have some blood while I urinate. I am reading a lot about the issue and who the experts are if I need more procedures in the future… which will eventually happen. It sucks, but what I am going to do but be prepared. It has been a journey.

So until next time my friends…..

12-5-2016: Blood Glucose Issues

Last week I visited my Medical Oncologist for my monthly visit.  We did the blood draws and and flushed my chest port.  After that we talked about my care.  I told him that I have had success with the bowel program that Dr Weiss at UCLA put me on so that is a plus. One item that Marcy brought up was my blood glucose levels either crashing or going really high randomly.  As an example she explained, on the weekend we walked the dog and I told her I wasn’t feeling well and we stopped the walk short.  She went to do something and I went to the kitchen.  By the time she walked in, I was sitting down with my head hanging down, my mouth slightly open and I couldn’t move my legs.   She asked if I was alright.  I told her no and to get the blood glucose monitor.  She did the test and I was in the low 50s.  She got some orange juice for me and I ate some ham.  It was really weird and if she wasn’t there, I really don’t know what would have happened as I couldn’t really think or move.  So that has happened to me a few times over the last couple of months. The doctor took my A1C measurement in June and stated that it was normal.  So he recommended I go see an Endocrinologist.  He recommended one in Ventura that he knows but she is a one doctor office and is booked for 2 months.  Plus they had me on hold for 25 minutes before I had to hang up.  I started thinking, how good of service and I going to get there?   So instead I called UCLA for and appointment.  They have availability next week.  So I think it was a good call.

So who knows what lurks inside causing this issue.  It is a little scary so I guess I got to get it checked out.

Onward…

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11-14-2016: Update

I know it has been awhile since my last update.  I have just been dealing with the side effect issues that I already discussed however a I may be on the road to getting to the bottom of this.

First, I had my monthly appointment at my Medical Oncologist office on November 1st.   I had my normal chemo port flush and blood draws.  Simple things to do now.  I talked to the doctor and told him I was going to get a 2nd opinion at UCLA’s digestive diseases center. He thought that was a great idea and even knew the doctor I made the appointment with.  Other than that, I got my Lupron shot and was on my way.

On November 9th I went to UCLA.  I saw a Dr. Weiss who is a Gastrointerologists.  I brought all of my MRIs, reports, etc.  We discussed what has been going on and what my current GI doctor diagnosed me with.   He thought that I may have the radiation interitis and that the section of the large bowel affected was not moving my stool through.  But, he stated that will cause the next issue which he believed to be “overflow diarrhea”.  He did not think I had bacterial overgrowth syndrome.   The root cause of the overflow diarrhea is actually constipation.  The stool stops and your body naturally absorbs the water from it.  If it sits there too long, it hardens and you become constipated.   It is probably doing this in the section that was damaged.  So the hardened stool sits there and diarrhea builds up behind it.  On occasion, the diarrhea comes past it with force.  So not only do I get bloated, stomach pain, back pain, with the constipation, I also get diarrhea that I can’t control.  Horrible cycle.

To test this theory, I told him I just had diarrhea that morning.  He stated that if I just had normal diarrhea, there should be no stool in my bowels.  So we took some xrays.  He stated that we have to keep the stool moving so that section can heal.   So today I got the xray results, sure enough, I had stool and gas in there.  So the constipation was already building up again.   So I am taking miralax twice a day and other stool softeners that he prescribed.   It seems to be keeping things running.  If I get any buildup, I have to take more.

So this isn’t the thing I want to be writing about or having you read about but I have to tell someone!  At least I am not posting pictures!!

Anyway, other than all of this, I am continuing the fight.

Onward…

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10-20-2016: GI Doc Update & Another Issue

So I went to see my Gastroenterologist.  She told me that they didn’t see anything unusual on the MRI for my bowels.  She diagnosed me with Radiation Enteritis and Bacterial Overgrowth Syndrome.  That was a new term for me.  She stated that she wants me to start a new antibiotic called Xifaxan.  Apparently it is a fairly expensive antibiotic and will need approval from Blue Shield.  She stated that it has very little side effects – sure.  I haven’t had anything yet that doesn’t.  But I will give it a try.  I read up a little more of the Bacteria Overgrowth also called Small Intestine Bacterial Overgrowth (SIBO) and Small Bowel Bacterial Overgrowth Syndrome (SBBOS).  So it seems that I got the Radiation Enteritis, and that lead to the Small Bowel Obstructions and Diarrhea.  With months of diarrhea, it lead to the bacterial overgrowth.  So one thing lead to another.  Still, I was a little dismayed that she didn’t try to give me any other education while in the office or suggest some additional diet things to try and stop the overgrowth.  I had to read it on my own and I am wondering if I am getting the care that I want.  With that, I made an appointment at UCLA and their Division of Digestive Diseases.  I feel like I am doing all the work on this.  That appointment is on November 9th.  I will update again after the antibiotic and the appointment.

Now the next issue… my left shoulder.  So last year around April my shoulder was hurting as I tried to lift it and at night. So much so that I went to the ER one Saturday morning.  That ER doc (at Kaiser), put me in a sling and referred me to an Orthopedic doctor.  Well in that healthcare system, it takes two months to see an Ortho doc.  So it was not until June when I went in.  In that time, my shoulder slowly had less and less motion and lots of pain. When I finally got to see the Ortho doc, the first thing the doc says is they should have never put you in a sling, that just makes it freeze up more.  Which is why he said I had Frozen Shoulder.  He told me I may have some underlying issues, but that he couldn’t do anything except give me a shot and refer me to physical therapy.   That seemed to help and then the PCa thing took over my life. Well in June I started to have shoulder pain again.  I started to do exercises like I did before but that didn’t help. The pain actually is constant.  So I made an appointment with an Ortho doc again.  He told me it was not a frozen shoulder again and sent me to get an MRI.

Here is a picture of my MRI

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Well I just got the report back and here is what it says:

1: Focal intrasubstance tear within the distal footplate of the anterior supraspinatus tendon involving 50-60% of the tendon thickness.

2: 2. Mild subacromial-subdeltoid bursitis. Mild acromioclavicular osteoarthritis with associated capsular hypertrophy.

3: Mild biceps tendinosis and tenosynovitis.

Just reading it makes my arm and shoulder hurt.  So a damn tear… I understand that they typically want to do surgery for anything over a 50% tear.  I have my follow up appointment with the Ortho doc on Monday.  I will see what his game plan is.  Then I have to pass that on to my Medical Oncologist to see if he is okay with that plan.

Well the hits just keep on coming.

I will update again next week.  Onward….

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