Incontinence, continued

I may have mentioned this in an earlier posting, but I have had incontinence three times due to prostate related treatments. 

The first time was 6 years ago after my original prostate surgery. I was catheterized for 3 weeks due to swelling, but after that subsided I learned how to do Kegel exercises and regained continence on my own. I don't remember how long it took. I continued to have a strong urge to pee but at least I wasn't leaking. I used the med Oxybutynin for quite a while but I gradually learned when and where not to drink lots of liquids, and only used Oxybutynin when we were on trips. 

The second time was January of 2017. I had a procedure called a cystoscopy (no fun) where they stick a tube up your penis to have a look at your bladder. You're awake and it is rather unpleasant. That night I couldn't pee on my own so we went to the emergency room and they catheterized me; I had the catheter in for a week, during which I had a UTI.  

We left for a month in South Carolina shortly after and I was incontinent while we were down there. I thought I could regain continence on my own but I was leaking the whole time we were in S.C. (no fun!). When we got back I found out that there is physical therapy for incontinence; by the time I started it was April, and continued it until June. I think it took long because: 1) I was 6 years older 2) I had the UTI complication. 

The third time was after my spine surgery on July 25th. The entire month of August was spent getting a catheter put in, having spasms where I couldn't pee, and going to the ER to get catheterized again. I got another UTI. At one point my pee looked like coca cola. After three trips to the ER, the catheter was finally removed. They taught me to self catheterize just in case. 

While I was healing from the surgery, my surgeon just wanted me to walk. I did the Kegels on my own. He finally agreed (at my prodding) to physical therapy for my back which helped my back a lot. I continued the Kegels. Finally I started PT for incontinence again in November. That was four months after my surgery, but I am counting three months since they stopped having to catheterize me.

My original therapist, a woman, retired. My new therapist is a guy. I liked/like them both. I was a little concerned that because of my spinal surgery, PT may not work as well now. My new therapist says that if you can control the defecation muscles, you can train the muscles that control urination. 

He also says that continence is regained in the following order: 1) sleeping, 2) sitting 3) standing 4) walking 5) lifting. I'm getting closer to controlling sleeping and sitting. I'm hoping that these will be in good shape by the time we leave for S.C in late January. I'll continue to work on it while we're in SC and most likely get another course of physical therapy in March. Hopefully I'll be squared away by spring!

XTandi, continued

The list of side effects from Xtandi keeps growing. 

My sense of smell and taste has been affected. My oncologist verified this and had a term for a change in tastes due to cancer meds. 

I used to like Dunkin' Donuts Coffee. I tried it in a couple of locations and it all tastes the same - blah! I tried Starbuck's and it tastes funny too. I guess I'll be a tea drinker for the time being (I couldn't tell you what good tea tastes like). 

I also have these periods of fatigue that seem to come and go. Sometimes I'll take a nap, sometimes I don't have time and that fatigue goes away. My oncologist calls it a "cancer fog".  

I am also on Lupron and that gave me hot flashes but I didn't notice any worsening of this side effect. In fact it seem to have subsided a bit. 

The latest side effect is very odd. If I sit for a while and then try to get up, I get a pain in my thigh (about a five on a scale of one to ten) and a feeling of weakness in that leg. If I walk around a bit the pain and sense of weakness goes away. This has been going on for about a week.  

This is kind of disheartening because my back stiffness, thigh numbness, and incontinence all seem to be improving (though slowly) and then I get another physical ailment. I was a little bummed out yesterday but I'm back on the optimism horse again today. I realize that some people have it so much worse. Plus as with the hot flashes, maybe this pain will be short lived.  

If I'm lucky, I'll be on Xtandi for 2 to 4 years before it stops working. Then it'll be on to another drug? I'm hoping that they'll have immunotherapy working for prostate cancer by then.

I mentioned some short term things that I wanted to accomplish going forward.

I was able to complete a Polish class, which will help my genealogical research.

I also completed a genealogy class. 

But I passed on tutor training for Literacy Volunteers for now.

My back was just too stiff for me to sit in class all day (the other classes were a couple of hours). Plus my continuing incontinence makes me nervous about being in public for long stretches.

My back is better now, and I start physical therapy for incontinence tomorrow.  I think I should be squared away to start tutor training in the spring.

Maybe others would be more determined than I am, but you have to be comfortable in your own skin while recovering from advanced prostate cancer treatment.    

I thought there were no side effects from Xtandi, the new high-powered hormone that I'm now on. I think I spoke too soon.

I take warfarin because of a heart defect - it reduces my stroke risk when I go into atrial fibrillation. I get monthly blood tests to check my warfarin levels, and they started getting inconsistent after being steady as a rock for a long time. My cardiologist checked the literature and sure enough, Xtandi can interfere with Warfarin. He made a dosage adjustment and it appears that my warfarin levels are now good.

I went in for a regular checkup with my cardiologist and my echocardiogram showed my heart rate to be elevated. He scheduled me for an EKG and possible holter monitor the next week. In the meantime he told me to up my metoprolol dose from 50 to 100 mg, and to check my heart rate on my home blood pressure machine.

While I was seeing some slower heart rates, I was still seeing several fast ones as well. The EKG showed my heart rate to be fast, and he increased my metoprolol dose to 150 mg, and sent me home with a holter monitor for a day. 

I haven't heard the results of the holter test, but I'm thinking I'll be stable again.

Bottom line: powerful hormones can affect your body in many ways. 

PS - my PSA has dropped from 20 to 10 to 7.5. Every month should show lower readings. This is due to the Xtandi.

A few things happened in November. I finished physical therapy for my back and it feels better. I still need to continue to walk and to do the exercises that I learned in PT. I'm not sure what my "new normal" will be, but I'm quite sure I'm not there yet and that I will have to do months of work. I also got a list of what I can and cannot do with 4 titanium rods in my back.

My thighs continue to be numb, but I think less than it was before. It's amazing how slowly things heal when nerves are involved. Time and exercise should fix this. I'm just not a very patient person.

I continue to do my Kegels religiously but three months since they removed the catheter post-surgery I'm still incontinent. I keep a log and I think things are improving but slowly. The good news is that I start physical therapy for incontinence tomorrow. It worked once before so there's no reason why it shouldn't again.

I will continue with November updates in the next day or so.

Living with cancer

I was hoping to really get involved in volunteering after I retired. One of the things that attracted me was Literacy Volunteers. I was supposed to start training last week, but I decided to notify them that I wasn't quite ready for that. It's a big commitment that requires a lot of work, and I think I need a better feel for how I'm going to feel and when I'm going to have the energy to do this.

I did sign up for an intro class in Polish - that's an hour and a half a week for 8 weeks. I also signed up for a geneology class that is two hours for 4 weeks that starts after Polish ends.

We love to travel, but I think we need to not plan too far out. This is a change for the both us. We're looking at an Alaskan cruise for 2018.

Right now, I think I need to think about short term interests. Maybe future meetings with my oncologist and cancer psychologist will change my outlook for the better. I hope so.

Some good news, some not so good.

My radiation treatments were completed in September, and I really didn't have much in the way of side effects except some minor fatigue. A few naps hear and there took pretty much took care of that.

My new hormone - Xtandi - does not appear to be causing me any new problems. It's supposed to lower my PSA - it has - my PSA was cut in half after a month's worth of treatment. I naively thought it would reduce my PSA to 0 in a month, but after reading about the experiences of other men with advanced prostate cancer, I realize that it may take 2 or 3 months. I have an appointment with my oncologist next week and I have resolved not to freak out (or not) until I see him.

I had an appointment with a psychiatrist who specializes in cancer patients, but he called me the night before and moved my appointment up. I was stuck in the middle of  Hartford traffic but made it on time, but then he didn't show up on time so I left. After I cooled off, I realized that my behavior didn't help me. His office called and apologized, and we set up another appointment. I think that I will need help dealing with my cancer.

My back continues to heal from the spine surgery. I am up to 1 3/4 miles walking. But my back is really tight. I asked my surgeon to recommend a physical therapist to help me regain strength, flexibility and balance. He is sending me a script to begin that process.

As I write this, it's 10 weeks since my spine surgery, and 6 weeks since they removed my catheter and I still am experiencing incontinence. This is normal, based on earlier experiences, but the impatient part of me is not happy. I continue to do my Kegel exercises regularly, and have started to (once a week at home) capture my pee (I have a couple of collection bottles), as well as weighing the urine pads. I am hoping that by comparing the totals, I should see the weight of the pads go down and the volume of  pee go up. This hopefully will help keep on working on this really bothersome problem. You may have to be anal to do this, but I need some measure of success to keep me going!

When I underwent spine surgery, they sampled some of my spine and the lab test showed a bacteria that sometimes affects people with "hardware" in their bodies. This usually happens 10 years or so down the road. My lab test came back positive, and I just had the hardware (titanium rods) inserted.

I met with an infectious disease doctor and he thought the positive test was due to lab contamination, but just to be safe, he ordered blood tests, which he'll go over with me next week. If the test was positive, I would need to have a port installed to administer an antibiotic for about a month. Here's hoping the test is negative.

I also made an appointment with a psychiatrist who specializes in cancer patients. I haven't suffered any depression yet, though I do admit that I was bummed when I heard that the average survival rate of someone with my cancer is three years. I've never been to a psychiatrist, but I think it would be a good idea to gain some coping skills because I will probably need them in the coming years.

I have been taking hormone XTANDI for a few weeks now and I don't have any side effects beyond those that I had with the Lupron injections. I had headaches for 3 or 4 weeks and then they went away when I started on Lupron. There were no headaches so far with XTANDI. I continue to have hot flashes but I kind of just ignore them.

I'll be getting blood tests every 6 weeks and my PSA should drop to 0, which would mean that my cancer is in remission.

I started radiation treatment on September 7th. I was surprised at how short the treatments were - 15 minutes. I have a total of 10 treatments so I'll be done by September 20th. The last time I had radiation treatment I was very tired by the time the Friday treatment ended; I had to have about 35 treatments and I was tired a lot.

I did take a nap after these two treatments, but then again I've been taking a lot of naps since I had the surgery 6 weeks ago. I don't think I'll have that level of fatigue that I had the last time I had radiation. I bought some calendula cream in case the radiation irritates my skin, but that doesn't seem to be happening so far.

It seems like there have been improvements in radiation therapy since I had it 6 years ago. Just so long as the radiation knocks out the cancer!

My catheter was removed (after four weeks) on August 28th. At that time, a nurse showed me how to self catheterize. It sounds awful, but I'm actually better at catheterizing myself that some of the ER nurses! I only had to do it a half dozen times - I found that between my own peeing and leaking that I wasn't retaining any urine - when I catherized I wasn't collecting much urine.

However I was incontinent for the third time in my life. There are three types of incontinence - in bed, sitting and moving. Unfortunately I have the first type - which means total incontinence. Fortunately I went through physical therapy for incontinence in the spring so I remember the correct way to do Kegels and I'm slowly improving. At this writing, it's been six weeks since spine surgery. It will probably take 3 to 4 months for me to regain total continence.

I am getting out but I'm afraid of an embarrassing leak - I wear a Depends and insert a pad inside when I do go out  This give me some confidence in social situations. As I continue the Kegels I will gradually only wear pads, and then lighter ones. I've done this before so I just have to be patient, which is not one of my strong points.

People have no idea I wear pads, but I am self conscious. I worry about odors, so I change pads often, take a lot of showers, and make liberal use of powders and cologne.

August 24th was a day that made me nervous. I had appointments with both my oncologist and the radiation physician. Radiation was something I went through 6 years ago for my prostate so I was familiar with what that involved. What I was more nervous about was my oncologist visit. He would be managing my stage 4 cancer going forward.

Dr Kamradt (the oncologist) is a really nice guy. He explained that I would now be taking a more powerful hormone called XTANDI. I'd be taking this orally in conjunction with Lupron which is an injection every 6 months. I'll be meeting with Dr Kamradt every 6 weeks; prior to that I'll be having a blood test to monitor my PSA and testosterone levels.  He ordered a blood test that day and my PSA was 19. The idea is to get it down to 0.

XTANDI is unbelievably expensive. He had the pharmacist submit our case to the Patient Advocate Foundation and we qualified for a much lower cost.

I guess you have to be careful about what you ask for. I asked him what the expected survival is for somebody who had what I have. He told me three years, but he thinks that because I'm younger and in fairly decent health, that I should be able to be on the outer range of that average. That is a sobering thought.

Angie & I also met the radiation doctor, Dr Boyd, who explained the treatment regimen. It'll only be two weeks this time.  He set me up for the initial assessment on August 29th where they take a bunch of measurements and set up the schedule for treatment. They'll start right after labor day.

On August 28th they removed my catheter again and this time I've seemed to have healed from the spine surgery (5 weeks) and my bladder is doing better. I will have to face incontinence once again. I'll address that in a future post.

My urologist's nurse wanted to check me out, but we were frankly tired of all the trips to Hartford and Farmington, so on August 17 she sent me to Manchester  which is closer to our home. We had the pleasure of meeting Nina. Besides being smart (she was an APRN) she was very empathetic.

When she heard that they had put the same catheter back in in the ER, she put in a new one. She also took another blood test, and extended my prescription of Keflex. We went home thinking our catheter nightmare was over.

But on  August 23rd around 10 PM, I started leaking around my catheter again. We called the on call urologist who once again directed us to the ER. This time we lucked out. We had a physician's assistant who flushed out the blood clots (this had been the cause for the last two ER visits), and a nurse who was one of 3 people who were really good at putting in a catheter (the other two were a urologist in the office, and Nina). all we had to do is lay low until August 28th, when the catheter was finally removed for good.

Having a catheter put in while you're awake is not painful, but unpleasant. Some of the ER nurses need to have one put in them and maybe they'd get better at it. Like I said, there are actually people who are good at it and the experience while not pleasant is better.  

Angie drove me to the Hartford Hospital emergency room on Friday, August 11 at 5:00 AM.

Based on an earlier ER visit, I told them that I was in a lot of pain, so we got attended to fairly quickly (it was uncomfortable - pee was building up in my bladder).We had warned the nurses that I required a smaller catheter (14) because of a stricture, but they knew better (sarcasm intended) and tried a medium catheter (16) with no luck and much to my discomfort. They then put in a 14 with better luck. We were back home by 7:30.

A day or so after that ER visit I developed a UTI (Urinary Tract Infection), probably to the multiple efforts to catheterize me  (unbeknownst to me at the time). The pee coming into the catheter looked like the river that Moses changed to blood in the movie "The Ten Commandments".  I got in touch with my urology doctor's office, and they thought it was due to radiation damage from 6 years ago together with having a catheter.

On August 15th I started leaking pee around the catheter, so I called the on call urologist. He instructed us to once again go to the emergency room. At least this time the pressure was being relieved by the leak. This visit was an exercise in futility. We got there at 10:00 PM, and waited for hours to get a room, then hours to be seen by a nurse. We went through the same routine about catheter size, but at least they used a 14 catheter. The only problem is that they removed the old one, cleaned it and put it back in.

One good thing that happened during that visit is that the doctor did a blood test and discovered that I did have a UTI. She got me on Keflex ASAP and that would cure the UTI over the next week or so.

BLADDER WOES

My back has been great - I celebrated 3 weeks this morning and there have been no issues or pain.

I wish I could say the same for my bladder! Spinal surgery can cause bladder and bowel issues. My bowels worked fine when we came home. The bladder was another story.

They had catherized me during spinal surgery, and they removed that catheter before I went home. I was "leaky" but able to urinate some. The problems were that I started having bladder spasms the second night home from surgery - Monday, July 31st. Dr Kesler's nurse Amanda wanted me to come to their office for a bladder scan, to see if I was  retaining urine. I told her that I was still too shaky/weak to come to their office. I finally was able to come in on Thursday and I was retaining urine ( 500 ml).

They catherized me that day (Thursday, August 3rd). This catheter stayed in until Thurday Aug 10th. This was fine with me because without the catheter my sleep was affected by nightly 2 - 3 hour bouts of bladder spasms. During the spasms my bladder "shut down" and as soon as they stopped I would/leak/pee. With the catheter, there were no bladder spasms and I slept like a baby.

Amanda did another bladder scan on Aug 10th and I only had 27 ml in my bladder, so they took the catheter out. That very night, I had bladder spasms again that started at midnight, and were still going strong at 5:00 AM. I called the on call urologist, and he instructed me to go to the Hartford Hospital ER.

To Be Continued on the next page

The next few days consisted of my getting stronger - I slept a lot and my appetite returned. My wife Angie was wonderful - helping me dress and bathe.

The words for me were "BLT" - no bending, lifting or turning. Angie had these signs all over the house.

Around two weeks after surgery, and had a follow up visit at my surgeon's office. They said I was doing great and they removed the staples. It was time for me to keep improving and start doing things for myself.

I was up and walking the day after spine surgery. They also had me walking a small set of stairs. Angie & I thought I would be spending a few days in a rehab center. The physical therapists were against it - they thought I was doing well enough to go home, plus we avoided the chance of infection.

I think that I received excellent care while in St Francis Hospital - from the doctors all the way down to the people that cleaned the room. I tried to thank anyone who did anything for me, and as a result I got a nickname - the "Rock Star Patient". I had the most serious surgery of the floor, and I complained the least.

Coming home was a little scary - the physical therapists showed us how to get in and out of bed, get in and out of chairs, etc. I didn't have much of an appetite after the surgery, and this continued for a few days at home.

I started having bladder spasms on the second day - these would wake me up from a dead sleep. We called my urologist, and they wanted me to come in for a bladder scan, which we resisted for a couple of days because I was so wiped out. We finally went to the office and the bladder scan showed that I was retaining urine. They put in a catheter.

I was nervous about the catheter because I had some bad experiences with a catheter in the emergency room. This was a piece of cake. I immediately felt better and started sleeping for 10 hours at a clip. I was also taking a daily nap - I was making up for months of sleep deprivation.    

July 26th was the date scheduled for my back surgery. There wasn't much time to prepare mentally - but I was ready. The past few months had been very painful. I had sharp pains in my hamstrings when I tried to get out of a chair. Sitting on a toilet seat was like sitting on a bed of nails. I woke up several times  a night with numbness in my right leg. As scary as the surgery sounded, I could not go on much longer in the state I was in.

I had to meet with my urologist, my cardiologist, my general practitioner and get their approvals.
Angie drove me to St Francis Hospital early in the morning of the 26th. My daughter Lisa came down and stayed the whole day with Angie. My daughter Heather met them for lunch.

The level of support I got in the days leading up to the 26th was amazing - I think it helped me to gain strength to face the challenge - spine surgery is very serious. The surgery lasted over 5 hours. During the surgery they cleaned out a diseased vertebra, repaired a cracked vertebra, and fused everything together with 4 rods.

 

I do believe that I'm a certified hypochondriac. I can't tell you how many times a minor ache or pain led me to believe my prostate cancer had spread. This time, I was convinced it was a muscular issue because the pain was everywhere but the spine.

With spinal injuries, you can get nerve involvement. I've had pain in the butt, in my hamstring muscles, and numbness in my right leg when I'm sleeping. Some of this pain is pretty intense. My doctors prescribed a muscle relaxant as well as tamedol. I'm a little afraid of the tamedol as its an opiod, but there's been a few nights where I really needed something stronger than Tylenol. The good news is that these should all go away once my spine is repaired.

I met with a back specialist a few days ago, and was shocked to learn that the pain I've been experiencing is directly related to the prostate cancer that has metastasized in my spine. Dr. Kruger told me that my L3 vertebra has a significant amount of cancer, and my L4 is fractured. He strongly suggested back surgery and soon. I agreed to that - there really was no choice.

My surgery will occur on July 26th. Dr Kruger will use some sort of cement to repair the L4 vertebra, and screw a rod into about 5 vertebrae. I'm not sure how they'll handle the cancerous L3. This will be major surgery. The good news is that my doctors consider me a good candidate for the surgery,

I met with my prostate surgeon Dr Kesler the next day and he gave me another shot of Lupron. Since this hormone failed to stop the progression of my cancer, I will need additional hormones. So far there is no talk of chemo.

A few weeks after surgery I'll meet with my oncologist and he'll let me know what hormone(s) I'll need going forward. I will also meet with my old friend Dr. Boyd (he treated me 6 years ago), who will discuss the radiation treatments I'll receive.

I think I'm still in shock - I knew something was going on with my prostate cancer, but I was surprised how this all developed. I am remaining positive. As I said, they feel that I'm a good candidate, so they foresee me surviving for a decent amount of time. I really like all my doctors, and their nurse coordinators are the best. If you need cancer treatment, I think these things are important.    

Another disappointment has been my PSA tests since starting hormone treatment. The first one was around 4, which was a step in the right direction, since the previous one was 15. I took a second test prior to my doctor visit in mid July. I was expecting a PSA of near 0. I was shocked when it was 15!

I am not panicking but I am disappointed. I imagine that my doctor will mix up a new batch of hormones. New hormones may mean new side effects. But whatever it takes, I'll try to keep on moving forward. I'll post again after my doctor appointment.

I guess I may have been a bit premature in my optimism.

While it's true that I have worked hard and regained continence, I feel that those efforts led to a secondary problem. I was not working out regularly between January and April, and that affected my overall conditioning. I strained my back the first of May, reinjured it in June, and that led to yet another injury - Pyriformis Syndrome. This is caused by a strain of the Pyriformis muscle deep in the muscles of the butt. It's a small muscle, but it sure causes pain.

I have had a hard time sitting and getting up from a sitting position. Getting a good night's sleep has been a problem. It even hurts to cough, sneeze and laugh! I am currently getting some physical therapy which will take me through the end of July. The summer of 2017 has not been the best for me.

I guess the point is - no matter what stage of prostate cancer you're in, it's important to get exercise, as well as lots of quality sleep. I will work harder on these going forward.

It took a little longer than I anticipated, but I had my last physical therapy session two days ago. I  have regained  continence and can resume normal activities. I will continue to do Kegel exercises, but I'll be armed with the knowledge of how to do them correctly. I am sure that I'll have more encounters with prostate cancer down the road, but for now it feels good to feel normal again.

I finally saw the Physical Therapist, who did an assessment of the muscles that controlled urine flow, and she said mine were very weak. She thought that the triple whammy of a cystoscopy, a catheter, and a UTI did a real number on them. But she assured me that I would regain continence, but it would take 6 to 8 weeks.

During my first session, she placed electrodes in my anal area, and then told me to do some Kegels. The instrument gave me feedback that indicated that my Kegels were not very strong. After some coaching, I improved my "technique". Like any muscle, there is a right way and a wrong way to exercise.

I've had 3 sessions so far, and my incontinence is much improved. I am hoping that I will be continent by late May/early June. I will continue to do Kegels the rest of my life, except with an improved technique.

A couple of other things: so far my Lupron side effects consist of headaches (which seem to be fading, albeit slowly). I also have 3 or 4 hot flashes a day, but they are not too intense and don't last very long. I don't seem to have any problems with fatigue or weakness (any more than what I consider normal for a 65 year old).

I get more sleep now than when I worked. I go to the gym 5 days a week. I go on a hike just about every week. I am avoiding some exercises until I regain continence. Once that's resolved, I plan on doing more intense exercises for core strength and balance.

One more thing - I met the oncologist and he was great - he may be my new favorite doctor. He gave me some good news - the prostate cancer in my bones is very small, and should be halted in its tracks by the Lupron hormone. I asked him what happens if/when the Lupron stops working. He feels that they would add different hormones, and that as of now, I may never need chemo.

He gives me an excellent chance for living a long life, and as I have always felt, the longer I live with Prostate Cancer, the better the chances that new treatments will come along. 

   

I read an article today about somebody in my town who has been and is being treated for prostate cancer. I went back to my blog and realized that I hadn't posted since February - about 3 months. So I thought an update was in order.

Our month long Myrtle Beach vacation in February was affected by my condition - incontinence (see Feb post)- though I tried be as much fun as I could, I had good days and bad days. This was our first month long vacation since my wife & I retired, and I was pissed. I wanted to blame somebody for my condition, but in hindsight it was nobody's fault but my own.

I had always gotten up to pee once or twice a night since my initial treatments in 2011-2012. I had a stricture, but I could still pee. This past December, when I learned I had advanced prostate cancer, I wasn't sleeping very soundly. I heard terms like metastasized and ocologogist. I worried that the prostate cancer had exploded in my bones (though I was in no pain, except for those that I felt because I am a certified hypochondriac!)

And what about the Lupron hormone? What if it had nasty side effects? What if it doesn't work and I need chemo? How much friggin' time do I have?

In hindsight, I believe now that with all the thoughts floating around in my head, no wonder I couldn't sleep. And when I lie there awake, I would have to pee (a little) so I'd get up so I could (hopefully) sleep for a few hours before I had to pee again.

I told my doctor that I seem to be peeing more, so he gave me a cystoscopy when he gave me my Lupron shot. Then I went home and couldn't pee at all , had a catheter put in, then developed a UTI. All before our Myrtle Beach vacation.

In S.C. I did what I thought were Kegels, which I learned 5 years ago. The incontinence continued through our month long vacation. When we got home, I had an appointment with the same office that had done the cystoscopy, which I cancelled. My reason? They want to measure volume, which made no sense to me because I was leaking so much.

I came to my senses, and scheduled another appointment, which the office had to cancel. I finally had an apt, where  I saw that they had procedures to follow during their assessment.  I finally saw a physician's assistant who referred me to a Physical Therapist. Yes, there is such a thing as physical therapy for incontinence!

This is getting long - I'll continue in another post.    

Part 9 - My personal experiences with Prostate Cancer

I wasn’t planning of posting to this blog while on a month long vacation, but since I’m laying low for a while recovering from an indirect problem related to prostate cancer, I will post some relevant information. 

One of the possible side effects of prostate surgery and/or radiation is a stricture.

A urethral stricture is a narrowing of a section of the urethra. It causes a blocked or reduced flow of urine which can lead to complications. There are various treatment options which aim to widen the narrowed section of the urethra.

I have had urinary issues since I received cancer treatments. In short, I pee a lot. This seemed to be getting worse in the month before we left on our vacation. My surgeon scheduled a cystoscopy about two weeks before our departure date (in hindsight, not a very good move on my part). 

A cystoscope is a thin tube with a camera and light on the end. During a cystoscopy, this tube is inserted through your urethra and into your bladder so the doctor can visualize the inside of your bladder. Your urethra is the tube that carries urine out of your bladder

The procedure is not extremely painful (they use an anesthetic) but still rather uncomfortable. It only takes about 5 minutes, but those are a long 5 minutes!

When the procedure was done, I looked at the cystoscope. It didn’t look very thin to me. It was also freaky because there was a good bit of blood.

I went home and realized that I couldn’t pee (the procedure had caused some swelling in my urethra). I gave it a couple of hours (probably not a good move). My wife took me to the emergency room, and the plan was to insert a catheter. Like any emergency room, there was a wait. After a while my bladder got very uncomfortable. .

Finally a nurse arrived and attempted to insert a normal catheter (not a pleasant experience), but it was blocked by the swelling. She tried a smaller catheter and that didn’t work as well. She had to page a doctor from the urology department and he was able to get it in (immediate relief).

I had to wear the catheter for 5 days; it was during that time that my back started to ache. I mentioned that to the nurse who removed the catheter, but he suggested some Tylenol.

I was nervous to fly to Myrtle Beach so soon after the procedure, but we made it just fine. We went on about the business of having fun. I had to pee a lot (nothing unusual about that given my history) and occasionally there was a little blood and a burning sensation (not unusual for a few days after a cystoscopy/catherization). But these symptoms persisted, along with the pain in my back.

Finally my wife took me to a walk in clinic, and a urine test showed that I had a urinary tract infection, which sometimes happens after a cystoscopy. I’m on a strong antibiotic and should be fine after another day or two.

I will think strongly about scheduling a procedure so close to a vacation in the future.

Life (so far) after initial treatments:

Over the past 5+ years, I have felt good and have been able to lead a normal life. I take good care of myself – I try to eat right, get a lot of exercise, get plenty of rest, and try my best to just enjoy life. I’ve been blessed in life – an awesome wife, a wonderful family, great friends, and a wide variety of interests.

I know this may sound weird, but in some ways prostate cancer has improved my attitude about life. I used to get stressed out by work and other pain in the butt things that happen in everyone’s life. Now I seem to be a little calmer (my family may disagree there), and I more clearly see what is truly important in life.

Knowing that I have cancer goes away from time to time, but it always comes back, tapping me on the shoulder, whispering in my ear. But I think this has made me more focused. I know more than ever that life is precious. Sunrises are more beautiful. Roses smell sweeter.

I hope that this experience has made me a better person. That will be for others to decide. But I have plans to accomplish many more things – no more wasting time!

As I mentioned earlier, My PSA rose dramatically during my latest test.  I officially have advanced prostate cancer. It had metastasized to my lower spine, but it wasn’t a lot of cancer. I'm in no pain. My surgeon decided to put me on hormones. This is not a cure, but a treatment that will prevent the spread of prostate cancer for now. My PSA will go down. When it goes back up (hopefully 15 years from now), the hormones will have stopped working.  I know that there are various chemo drugs that could be the next step. But I’m hoping that by then ongoing research will have found something that will make prostate cancer like diabetes – a chronic condition that you just live with. And if I run out of traditional options,  I will volunteer for every trial that I qualify for.

As the late, great Jimmy V said: "Don't give up, don't ever give up".

I have an appointment with an oncologist (scary word) in March. As I learn more things from him (as well as other sources), I will post here again from time to time. But before that, we’re going to Myrtle Beach for a month. I’m hoping my prostate cancer will stay hidden in my suitcase the whole time.      

Part 8 -My personal experiences with Prostate Cancer

Speaking of long term side effects from prostate surgery (and radiation), the two most common are erectile dysfunction and incontinence.

As far as erectile dysfunction, you need an honest discussion with your surgeon (and partner) prior to surgery. There are “nerve sparing” techniques they can use to prevent this issue (ya’d think that would be common practice, no?). Very often erectile dysfunction improves after some long term healing. If it persists, there are medications and other techniques that can return some functionality.

More info:

http://www.harvardprostateknowledge.org/new-options-for-treating-erectile-dysfunction

Incontinence is also a major concern. Most men need to wear “pads” after surgery and/or radiation. Kegel exercises will help make this a temporary problem pretty quickly in most cases.

More on Kegel exercises:

https://www.nafc.org/kegel?utm_source=google&utm_medium=cpc&utm_term=how%20to%20do%20the%20kegel%20exercise&utm_content=92065425991&utm_campaign=&gclid=Cj0KEQiAh4fEBRCZhriIjLfArrQBEiQArzzDAbowOW-lqmAECF3-wCt_1PJEThEC6oGik3sDbj6vMokaAvML8P8HAQ

I was lucky that I never had any long term “leaky” incontinence; I have continued to do Kegels to this very day. However I have suffered long term “urge incontinence” (you have to pee often), due to the scarring that resulted from radiation. I have become adept at timing rest room stops. If I need some extra help on plane trips or long car rides, I have relied on the prescription Oxybutynin, which is a bladder relaxant.

These side effects should not prevent you from enjoying life!

Part 7 - My personal experiences with Prostate Cancer

While I was recovering in the hospital room after surgery, the surgeon gave me one of those “good news/bad news” talks. The prostate removal had gone well, but he told me about the suspicious cells that he had found. I would need follow up radiation as soon as I had time to fully recover from surgery.

There are two types of radiation for prostate cancer, adjuvant and salvage. I had the adjuvant variety – radiation that is performed within 6 months after a prostatectomy.

More about radiation:

http://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

My radiation treatments started in February, and ended in March. I had heard some horror stories about radiation. I have to admit that my experience was not too bad. I followed the instructions faithfully, and the only new side effect that I noticed was that I was very tired after a treatment.  After a treatment I peed so often that I worked from home – I could not make the half hour drive to Hartford without stopping once or twice. Lucky for me I had some understanding managers.

Part 6 - My personal experiences with Prostate Cancer

During Da Vinci surgery they lay you on your stomach, with your head lower than your feet. After 6 hours, my wife said I came back to the room with a face looking like the Pillsbury dough boy. By the time I came to, my face had normalized.

When I awoke, I was higher than a kite. I think they give me OxyContin for pain, which I usually cannot tolerate. The anti-nausea medicine they gave allowed me to tolerate it. As a result I was incredibly goofy even though I didn't remember it later. My poor wife - she waited through the surgery, and then had to put up with a comedy routine by the Pillsbury dough boy!  She was exhausted, and slept for a few hours in the room. Suddenly I had an incredible thirst and tried to wake her for some water. My mouth was so dry that I couldn’t talk higher than faint croak. Thankfully a nurse came in with water eventually.

As the meds wore off, a nurse came in and said “I’m going to make your day – I’m going to remove your catheter”.  Luckily my wife was there and set her straight. Putting a catheter back in without being drugged would not have been fun. This highlighted the fact that it’s always a good idea to have a family member to be your guardian angel during surgery – people can make mistakes!

My surgery took place during the night and by early morning they asked me if I could walk. I jumped at that chance, because I know that as soon as you could walk (and fart) you could go home. I walked several times during that morning, working up to multiple laps. During one of my walks I heard two nurses talking – one of them said “that’s the one”. I guess the news of my OxyContin-fueled comedy routine got around!

I was home in less than a day after surgery, and initially I felt pretty good. The pain was not so bad - I got by on high test acetaminophen They said to keep on walking, and I did laps around the rooms in the house. I felt well enough to attend Thanksgiving dinner the next day – hey this surgery thing is a piece of cake!

Remember that nurse’s warning about “some swelling”?  I remember back one fall marveling at a sheep’s udder at the Big E Fair – it looked so disproportionate on such a small animal. Very quickly I had what looked like a sheep’s udder between my legs!

I had left the hospital with a catheter, and the normal time that a person needs a catheter after prostate surgery is about a week. I had a one week visit with my surgeon and learned (no surprise) that I would need additional time because of all the swelling. It took a total of 3 weeks before it could be removed, and not before I was prescribed some strong diuretics. Those were 3 of the longest weeks of my life.

Once the catheter was removed, I was back at work in a about a week. But my treatments were not over yet…

Part 5 - My personal experiences with Prostate Cancer

People have all sorts of reactions when they learn they have cancer. I remember a discussion I had with a friend who had a very low stage breast cancer. She said that she often thought “why me?”  I don’t blame her for thinking this way, even though at the time I found that sentiment odd – one that I honestly never had. I was grateful to have a type of cancer that was treatable and very likely survivable. I know that life doesn’t work that way, but I thought if every family is touched by cancer, then I am the willing representative of our family with this type of cancer. 

A week or so before surgery we were invited to a preparatory meeting at Hartford Hospital. I was amazed at the number of men (and spouses) who were in the auditorium. It gave me a better idea why my surgery was not scheduled earlier - we were lined up like planes on a runway.

One thing from that meeting has always stuck with me. The nurse who was moderating the meeting said that “there may be some swelling after surgery. I leaned over and told my wife “that will probably be me”. Little did I know…..

Finally the day for surgery arrived, a few days before Thanksgiving. We checked in early, but had to wait until mid-afternoon because my surgeon faced a difficult surgery with a very large man before mine. When the time near, they gave me some very effective drugs. My doctor showed up to talk to me and I, very high and very nearsighted, asked him if he was the anesthesiologist. We had some laughs about that later.

What happened next was a little blurry. I was wheeled into the operating room, which I remember to be cold, so they gave me a blanket.  As they gave me my final meds, I saw the Da Vinci robot and asked if it had a nickname.  That was the last thing I remembered. After what seemed like a few seconds later, I woke up in my room.

My surgery actually took about 6 hours. My prostate was removed easily, but my surgeon found some suspicious cells outside my prostate bed. He had to do more than typical prostate surgery. These cells had to be biopsied, and they proved to be cancerous. My surgeon then had to remove a little more of my urethra than is usually done. During a follow-up meeting later I got my final answer to what stage I was – “2 ½”.

Part 4 - My personal experiences with Prostate Cancer

My urologist went over the typical sequence of treatments if prostate cancer progresses:  surgery, radiation, hormone therapy, and chemo. For someone in the early stages like me, the usual options were surgery or radiation. I opted for surgery and I wanted it tomorrow.  Hold your horses big fellah. I wouldn’t have surgery until November – four months after that meeting with my urologist.

I did meet my surgeon in August. I had a choice of the surgeon who had developed the robotic program for prostate surgery at Hartford Hospital, or one of his associates. I had hear that the “head honcho” lacked bedside manner so I chose the associate. I have no regrets doing that, as I feel my surgeon is excellent. But I met the “head honcho” later on and I have a lot of respect for him. I don’t think I could have gone wrong either way.

It was during this initial meeting with my surgeon that I learned in detail what prostate surgery entailed. He told me about the benefits of robotic surgery (less invasive, faster recovery time) over traditional surgery.

More about robotic surgery:

http://www.roboticoncology.com/robotic-prostate-surgery/

Before any treatment, my doctors had to determine for certain that my cancer had not spread out of the prostate bed.  I was subjected to a series of scans in August and September.  

I had a CAT scan of my abdomen and pelvis, and a whole body bone scan. I also had an MRI of my thoracic spine, followed by a CAT scan of my thoracic spine.  While these scans in themselves were not too bad, I found the waiting for results to be maddening. Most of the scans were scheduled on a Friday, and I had to sit through the weekend on “pins and needles”. I also had one more biopsy in the abdomen. Finally all the tests were in and all indications were that my cancer was confined to my “prostate bed”.  A November surgery was a go.

Part 3 - My personal experiences with Prostate Cancer

I met with my urologist a few days after that phone call and he gave me the details of the test. The biopsy had found that 7 of the 12 samples had cancer. Four of the sample had a Gleason score of 6 or 7. I had me some cancer.

A Gleason score is used to estimate prostate cancer’s aggressiveness — meaning its potential to grow and metastasize, or spread, to other parts of the body — using the Gleason grading system.  A tumor with cells that appear close to normal is assigned a low Gleason score (six or below); low-grade tumors are less likely to spread. A tumor with cells that appear clearly different from those of a normal prostate is assigned a high Gleason score (seven or above) and is more likely to spread.  The fact that they assigned four of my samples 6 or 7 indicated (to me) that they really weren’t quite sure about my cancer.

More about Gleason scores:

http://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html

To be perfectly honest, I didn’t pay much attention to a Gleason score – it seemed way too arbitrary and mumbo jumbo to me. I was more interested in what stage cancer I had. I remember a discussion I had with a insurance company nurse during my treatment. She asked me about my Gleason scores and I told her I wasn’t sure and I’d get back to her. I was working in the systems department at the time and I could take a peek at her notes. She was flabbergasted at my heretical attitude about Gleason scores.

My official stage at the time was T1c – non palpable (in a DRE test) but PSA elevated. I could live with that. I would later find that T1C was not quite accurate.

Part 2 - My personal experiences with Prostate Cancer

Right around the time of my biopsy, my youngest daughter was very close to the end of her pregnancy.  On the day that our youngest grandson was born, we were in the hospital visiting my grandson and his proud parents. My cell phone rang. I knew it was my urologist, so I went into the bathroom to take the call. He told me that I had cancer, and I was in shock. I went back in the room with my best brave face, but they all knew the prognosis. My daughter, already very emotional on this special day, began to cry. I felt so awful to be such a downer on this of all days.

The picture of my grandson and me always reminds me of this significant day – July 21^st, 2011. I’m welcoming our fifth grandchild into the world, and a few minutes later I receive my life changing news.

I would remiss to not mention the wonderful support that I have received from my family. My wife of 39 years has been my rock when I’ve been down. My two grown daughters and their husbands have been very positive when I’ve needed a boost. All of my grandchildren were too young when I went through my initial treatments, but I’m confident that my grandchildren will lend additional support in the future. There’s nothing better than family!  And friends are great too!

My personal experiences with Prostate Cancer in more detail

When I reached somewhere around the age of 50, my family doctor began the dreaded DRE’s (digital rectal exams).  Although not painful, DRE’s are just plain uncomfortable. Some prostate cancers are found via a DRE. My exams never showed any signs of potential prostate cancer. My family doctor did several DRE’s, and the two urologists that cared for me also did several, but they never found any signs despite multiple exams.

Here is more about DRE’s:

http://www.webmd.com/colorectal-cancer/digital-rectal-examination-dre#1

My family doctor noticed that despite being low, my PSA values had been slowly climbing. He referred me to an urologist, who continued the DRE’s, but had no concern about my rising PSA scores. I had a couple of appointments with him. I didn’t care for this urologist, so I asked my family doctor to refer me to another. This would prove to be a good move.  I want to emphasize that if you don’t have a good relationship with a doctor, find another. This has always worked out well for me.   

My new urologist was part of a group practicing out of Hartford Hospital. He was rather dry initially, but unlike the rushed, rather arrogant demeanor of my previous doctor, I knew that he would be fine to work with.

He quickly became concerned about my PSA. Though it wasn’t terribly high (4.5) it had been steadily rising over the course of the last couple of years. He set me up for a biopsy.  Just the word “biopsy” sent shudders through me. This was the first time I realized that I could have cancer. I don’t care what type of cancer a person has – cancer is a scary word.

The biopsy was quite an experience. Samples were taken between the scrotum and the anus. Some people claim that this type of biopsy is very painful. I found it to be a little uncomfortable, but not too bad. I liken it to getting a small electrical shock in a delicate area. I flinched whenever they took a sample (they took a total of 12). I apologized to the technician when I first flinched. He told me not to worry – by the time I flinched his instrument had already taken a sample.

Here’s a little more info on prostate biopsies:

http://www.webmd.com/men/prostate-biopsy#1

Here are some misconceptions about prostate cancer:

https://www.pcf.org/c/10-myths-and-misconceptions-about-prostate-cancer/

PSA testing

I’m going to repeat this from time to time…. I am not an expert. If you have any thoughts that you may have prostate cancer, please consult a physician.

One of the tools that urologists use to diagnose and monitor prostate health is the PSA test.

Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most men without prostate cancer have PSA levels under 4 nanograms per milliliter (ng/mL) of blood.

PSA test results are not foolproof. Many people with elevated PSA scores do not have cancer, and a low PSA score does not always mean a man doesn’t have cancer. It’s almost as if there is some art with that science. Common practice in the United States has been for men with a PSA score higher than 4 nanograms of antigen per milliliter of blood to get a biopsy to look for cancer. Prostate biopsy can be an unpleasant procedure, involving the insertion of a probe in the rectum and retrieval of several tissue samples from the prostate. Among men in their early 50s or younger, a PSA score of more than 2 tends to raise red flags for urologists.

There are a lot of varying opinions about PSA testing.

Prostate-cancer mortality has been declining slowly since 1996. The decline was anticipated to start at about that time after PSA tests were introduced in the late 1980s.

In recent years, several medical groups have come out against previous recommendations for PSA testing.  Here are a couple of articles about PSA testing:

http://www.cancer.org/cancer/prostate-cancer/early-detection/acs-recommendations.html

http://www.uptodate.com/contents/screening-for-prostate-cancer

Even when prostate cancer is found, a patient and his doctor are confronted with the bedeviling question of whether and how to treat it. Doctors agree that many of the cancers represent no health threat.

However, they also know that prostate cancer kills 29,000 men annually, and there is no way to differentiate between tumors that kill and those that do not. The number of prostate cancers caught before they spread to other areas of the body has increased dramatically in recent years, a trend some attribute to PSA screenings.

My cancer has now metastasized, but I am quite confident that with current treatment regimens, and with research that may lead to future treatments, that I will be “on this side of the grass” for several more years. From personal experience, I am convinced that without PSA testing, and subsequent treatment. I might have either been very sick or have already died.

A brief anatomy lesson

Prostate cancer death rates are down over the past 20 years due to advances in detection and treatment. Here’s hoping that ongoing research will convert all prostate cancer (actually all cancers) into a chronic disease like diabetes – a disease that a person can live with.

What is a prostate gland and what is good for?

The prostate gland is a male reproductive organ whose main function is to secrete prostate fluid, one of the components of semen. The muscles of the prostate gland also help propel this seminal fluid into the urethra during ejaculation .

The prostate is a muscular gland that weighs about three-fourths of an ounce (20 grams) about the size of a small apricot. It surrounds the urethra just beneath the bladder .

If you want additional information, check out more of this article:

http://www.livescience.com/32751-what-does-the-prostate-gland-do.html

Here’s a visual of the prostate:

http://www.medicinenet.com/image-collection/prostate_gland_picture/picture.htm

When I first met my surgeon to discuss surgery, I had little idea of the exact location of the prostate gland, and what surgery entailed. When he told me that he was going to cut the prostate out near the bladder, and also at the urethra, and then reattach the urethra to the bladder, I was stunned. So if you are considering surgery for prostate cancer, spend a little more time than I did researching the procedure!

More information on prostate surgery:

http://www.cancer.org/cancer/prostate-cancer/treating/surgery.html

Here is a rough timeline of the events that I experienced:

I received my prostate cancer diagnosis on July 21^st, 2011. I had a prostatectomy in November of 2011. I received radiation in February and March of 2012. My surgeon then monitored my PSA’s every few months, which held steady at 0.1 until April of 2014, at which point they started slowly rising. I hit 0.2 (considered an indication of biochemical recurrence) in September of 2014. My surgeon believed that any cancer in my body would be undetectable at a PSA level of 0.2, so we continued to monitor my PSA’s. I then had successive readings of 0.3, 0.6, and 0.7.  My doctor ordered a CAT scan and bone scan when my PSA read 1.1 in July of 2016, but these were negative.

I thought that my gradual ascent would continue for quite some time – maybe 5 years or more. Let’s keep kicking than can down the road. I was shocked when my next reading jumped to 11.2. I figured it was a mistake, based on the last 5 years of readings. The PSA test was repeated, and it was even higher.  I had crossed the threshold – I now had advanced prostate cancer. I will share in more detail a little later how I got here.

I make jokes about my prostate cancer from time to time, but that’s just my way of handling it. Cancer is no joke. I have had my dark moments but I refuse to give into it. My cancer is always whispering in my ear – not every day, but quite often. At least I’m alive to hear those whispers.

Prostate cancer is considered one of the ‘better cancers” – it tends to grow slowly. When caught early, many men appear to be cured – I personally know a few men who have had no problems 15 years after treatment – there may be others who have gone longer. Autopsies of elderly men have shown that a large number had prostate cancer, even though they didn’t show symptoms and they died of something else. In a majority of cases, it grows slowly.

Some prostate cancers are more aggressive. If these prostate cancers are not treated and they metastasize, they can morph into very serious cancers. This is not a pleasant way to die. There are some men who choose to “watch and wait”, their cancers do not spread, and they live out their normal lifespan.  The problem is that it’s sometimes difficult at the onset to determine what type of prostate cancer a man has.

Here are a couple of articles that go into more detail on this subject:

https://www.verywell.com/what-happens-if-prostate-cancer-is-not-treated-2782034

http://www.news-medical.net/news/2004/06/09/2271.aspx

First blog - intro

My name is Mike Dziadzio and I live in Enfield, CT.

I created this blog to share some of my prostate cancer experiences with other men who have it, and also to let family & friends know how I’m doing.  Initially this blog will be mostly retrospective – how I got here from there. Then I plan to continue to post as events unfold.

I’ve learned a little bit over the years, discussing prostate cancer with doctors, with friends who have had it, attending support group meetings, and reading a lot of stuff online. Doctors tend to not want to prognosticate – they like to deal in facts. My friends have mostly been ”clean” for years and seem to have beaten prostate cancer. The support group meetings sometimes have not applied to what I’m currently going through (though I strongly recommend them).  A lot of medical  internet articles tend to be very technical – some of them make my head spin. So I decided to start a blog of what I knew – maybe it will be of some help to someone who just found out that they have prostate cancer. Since I started collecting my thoughts for my blog I found a bunch of other blogs (why I never looked for any before this is beyond me).

 I will also not assume that my readers know anything about prostate cancer (even though I’m certainly no expert). So if you’re looking for experts, try these other blogs.

http://www.healthline.com/health/prostate-cancer/best-blogs-of-the-year#7