Showing posts with label Prostate cancer. Show all posts
Showing posts with label Prostate cancer. Show all posts

Monday, April 28, 2008

Monday, April 28th 2008

Well Mallow turned out to be a P.W. (Personal Worst), still I managed to keep several of my peers and, in particular, all except in the M50 category, behind me. I was happy enough with the run but I just seem to be running "through treacle". I can't complain (but I do) - I'm getting out and enjoying myself - not as much as before, but it feels good nevertheless.
Boy was I tired both Saturday (9 miles) and Sunday (12 Miles). 43 miles for the week.

Yesterday I found out that a neighbour had the same op, under the same surgeon, several years ago. I hope to talk to him over the next few days. I live in a small 'cul-de-sac' of 26 houses. It turns out that 5 of us have had prostate cancer, with 4 having surgery. Something in the air? I wonder what the stats people would make of that.

Thursday, April 24, 2008

What to do - The Decision

The Decision
The medical crowd give you a leaflet and send you off to make the decision. Between when Mr. L., gave us the bad news and our return two week later, I asked D. what she thought L. expected would happen next. She replied “He wants you to tell him what you want to do.” I said “That’s exactly what I thought.”
I reckon I’m pretty good at research. A lot of what I do for a living involves researching. My interest in genealogy is similar. Anytime I come across some theory or fact, I ask the question “How came we confirm or corroborate that?” So I’d done a lot of research on the net and come across a lot of good advice and info. Came across a lot of wacky stuff too. That’s the main thing; get to know when you’re dealing with crap and cut it out.

Watchful Waiting
For God’s sake, I’m just short of 55 and in excellent health and fitness – except for this ugly little “walnut” inside me. ..and the cancer appears to be a pretty aggressive bugger. Except for the cancer, I’d have a life expectancy of 35 years. Watchful waiting is for slow-growing cancers in people whose life expectancy is less than their mortality period for PC. No chance. Not for me.

Brachytherapy
Several people recommended this but I wasn’t convinced. You’re estimating the size of the prostate from ultrasound and trying to place radioactive pellets inside the gland. Apparently the pellets have a two mm “sphere of influence”. That’s fine if it works. There are plenty of stories about it not working, i.e. “It came back!” When I had the first consultation and DRE, I was told that I’d got “quite a large prostate”. After the first TRUS biopsy, it was “quite small”, and after the second TRUS, it was “on the larger size.” So….you expect to place pellets, 2 to 4 mm apart, throughout the gland and get full coverage. No chance.

External Beam
For a while EBRT looked like being the only show in town. Thankfully the MRI came back clear, so it’s still an option – one I don’t intend to take, but an option nevertheless. Btw, the fact that the MRI came back clear doesn’t mean that there is no cancer there, just that there is no gross malignancy.
I rejected EBRT for several reasons:
No pathology – can’t tell what Stage or Grade you have.
Extent – can’t tell if all of it has been eradicated.
Surgery – If you have EBRT, you can’t subsequently have surgery. Actually you can, but they don’t recommend doing it. Apparently it “bonds” the flesh in the region. Because of this, I reckon EBRT is too risky – you never know when, or for what reason, you’ll need surgery in the nether regions.
Long term side effects – Colon problems, painful and bleeding piles. Apparently the side-effects of radiation creep up on you. In my running experience, anything that creeps up on you is likely to be both chronic, have more side-issues and probably worse than the things that happen suddenly. As a medical advisor put it “The sins of surgery are upfront”.

IMRT
When it appeared that surgery wasn’t possible, I started exploring what options were available for radiation. IMRT was pioneered in the Tyndall centre in Cork, however it isn’t available for patients in Cork. The nearest centre is in Waterford.
IMRT, Intensity Modulated Radiation Treatment, is a more focussed form and can therefore be better targeted, resulting in less damage to surrounding tissue.

Surgery
Laprascopic
[i'll add more here later]

Radical prostatectomy
The thought of this scares the shite out of me. I really don’t want to go there. I’m fit and healthy. Why bring this on me? Maybe I should emigrate to the South Seas and live happily ever after in permanent sunshine. Dream on!
I want this gone. I want to live a full life. My father, mother and elder brother were deprived of this.
For many years I’ve planned my retirement. I had planned retirement for sometime in the next three to four years, and it was to be an active and fulfilling retirement. The idea behind early retirement was to travel and do things while D & I both had our health. Two things have upset these plans; the economic climate has put a big damper on our pension fund and my cancer is the other. Both are outside my control to a large extent.
The market will return. The immediate thing is the cancer, and the pension won’t matter a damn if I don’t get it sorted. I might even be collecting life insurance – and where would we be then?

So the surgery: Why?
It will be gone, gone, gone – I hope. Mr. Q says he will be taking the Prostate and seminal vessicles and may be taking the lymph glands. I’m not clear but I think he’ll only take the Lymph glands if he feels, during the surgery, that they’re affected. I presume that they’re going to do path on biopsies immediately, otherwise how are they going to know? Whatever is taken, I will have the path three weeks later, when I go back to get the catherer out. One of the main benefits of surgery is that the surgeon can see what he’s dealing with and will take more than the gland, if he feels/sees that it is warranted.
Sure, I don’t want to be pissing my pants and I’d rather be having sex until I’m in the box, but if I don’t get this done, I may be in a box in 10 years or so anyway – and I probably won’t be in great shape leading up to my demise.

Incontinence & Erectile Dysfunction
These are very real prospects. Mr. Q made no bones about it “You will be incontinent and impotent.” “Don’t think you’ll be the first to be fully functional.” I know I’ll be both incontinent and impotent – Full Stop! I’m going for nerve-sparing on one side – the other is almost certainly gone – and research shows that nerve-sparing offers the best prospects for both incontinence and E.D.

I’m hoping that my fitness and general health will stand to me and that I’ll recover a relatively degree of bladder control within the convalescence period. I understand that the best I can probably hope for is “female level of bladder control”, i.e. that I will have stress incontinence – a little leakage when I cough, sneeze or laugh. I can live with that – the operative word being live – maybe I’ll feel differently when the op. is over and I’m home with the catherer out.

According to my G.P., Dr. C., a lot of the erectile function hinges on psychological well-being. He says that any problems prior to surgery will be magnified afterwards. Hopefully this is the case. I also understand, from research, that early intervention following surgery, is warranted, particularly in the form of drugs, e.g. Viagra, Cialis and Sildenafil, along with any/all other forms of stimulus.

Wednesday, April 16, 2008

Proactivity

Prostate cancer is reputedly to be slow growing…….NORMALLY!
From initial PSA check in April 2006 until diagnosis with what now appears to be either T2a or T3a cancer – we’ll find out which when the post RP pathology is available, just 21 months passed. That’s not slow growing!

My advice to anyone with a short doubling time is to “take the bull by the horns” and run with it. YOU need to get on top of this as fast as possible. Nobody, except yourself, is going to push this for you.

You will need to get as much information as possible about your (possible) condition. Remember “Knowledge is power!” …and “Time is Life!”

Armed with knowledge, you should have tests as frequently as possible, I would suggest 3 monthly, and have a DRE every time you visit the Urologist – if he doesn’t do it, then ask! Other tests are also possible, like the PCA-3 test. You need to catch this as early as possible. Waiting for the medical bods to consult each other is like waiting for the plumber to call…You’ll be there a while!!! They will dictate reports to each other, wait on results of tests etc. Every step of the way, there will be a delay of a day or two, at best, and this is all robbing you of time.

You can shave a day or more off every ‘leg’, if you pick up the phone and get a push on everything.

Get all contact info for every person/hospital/clinic you attend; name(s), phone no(s), fax no(s) and email address(es). If one test centre can’t do things quick enough, go to another.
For example, I was asked to go for an MRI and, instead of waiting for Mr. Q to dictate a letter to Mr. L., who in turn would dictate one to me, asking me to contact his clinic to arrange the MRI. I rang around all the local hospitals/clinics doing MRI, and also those in the two nearest cities, asking for the earliest possible MRI. For all in Cork, except one, there was a 3 week waiting list and a 5 day wait in one of the other cities. I got a slot within 3 days, made a tentative appointment, pending referral from my G.P. or Urologist, then both the G.P. and Urologist and had both fax through a referral letter. In doing this I probably saved myself at least a week, if not more.

Insurance
If you are reading this and have no have critical illness insurance or Life Insurance, then think long and hard before deciding against taking out cover.

Critical Illness normally only covers a relatively small number of illnesses, and even then there are restrictions on what is covered. The chances are that you will never develop one of these illnesses, so paying for CI cover will be a complete waste.

If on the other hand, you do develop one and you have NOT got cover, then, I’m sorry, but you are uninsurable. You will NOT get CI insurance after the event. Neither will you be quoted for Life Insurance. The horse has bolted!

Third PSA Check and First Biopsy

April 2007
April came round and I scheduled the PSA check ahead of the Urologist appointment. Of course, it had to be fitted round my busy work, running and racing schedule. A week or so later I got a message from the Doc, saying that the “PSA is 6.8, whatever that means”. Not a good sign.

I saw Mr. L. and he recommended a biopsy. I didn’t have a DRE this time, and didn’t ask for it either. The biopsy was scheduled for Tuesday June 4th, the day after the Cork City Marathon, where I was running one of the relay legs.

June 3rd
Cork City Marathon. I was Deputy Race Marshall but thankfully the Marshall was fit and able to cover the event, so I went off and took photos of all the Eagles I came across and also some around the mile mark and again around the two mile and three mile stages – these were all within 200m of each other.

With that done, off I went to my relay handover point; Victoria Road. I was to run the fourth stage, 6 miles, to Leesdale on the Model Farm Road. Probably started out too strongly but felt good. Nobody passed me, relay or marathon runner, until Ballyphehane Church. I’d been battling with someone from the South Link, having made up about 300m very, very quickly. Coming across Ballyphehane, I found the going heavy and thought “I measured this! This is the hardest leg! How the fuck did I end up doing this leg!!” Shortly after this the guy I was battling passed me and by Hartland’s Avenue had gained about 5m on me. I kept repeating the mantra “You can beat cancer!” in my mind. Going down Glasheen Road, towards the 18M mark, I had the upper hand but was mindful of the impending hill coming up onto Wilton Road. That was a tough hill and ‘yer man’ caught me just before the top and powered down Wilton Road, gaining about 15m in a short space of time. I thought he had me buried but, after we turned on to Model Farm Road, he seemed to tread water. He must have thought that he was only going to the turn…but we had another 1.5 miles to go, with about ¾ of that uphill – and the weather was scorching – about 22oC! I poured it on, maintaining my mantra and, very quickly, I felt him drop away, though he made a good early effort to stay with me – heard his laboured breathing. I thought the handover would never come – the handover straight seemed endless and I couldn’t pick out Paul until, it seemed, the end stages of the changeover ‘chute’. I looked back but, unfortunately, couldn’t pick out the guy I’d been battling. The 6.5 mile leg took me 36:15 and I was happy with that. The team, Golden Eagles, ended up in 14th place, in 2:48:xx. Not bad for a group with an average age of 48!

June 4th, 2007
Biopsy today. Not too bothered about this. I’m in good health. As P. says, “You’re running too well to be ill!” I reckon that this won’t show anything and then we’ll have to go looking for other causes of the elevated PSA.
I didn’t find the biopsy too bad. Dr. C did the biopsy and I got little or no info from him. During the insertion of the probe, I reckoned that he didn’t use any/enough lubricant. It felt rough. For the next 6 to 8 weeks, I still had soreness in the anal area. Preparation H and Daktarin (not both at the same time) helped. The discomfort wasn’t there all the time, though. Some time later, my G.P., Dr. C, suggested that the discomfort might have been due to micro-piles. Maybe so, but I reckon that the other Dr. C was too rough and probably didn’t use enough lubricant.

June 2007
I had a long wait for the biopsy results. Mr. L is on holidays for three weeks, so I won’t see him until he gets back. My appointment is for July 27th, however some pleading/grovelling got me in on July 4th. July 4th is a good day for us. I proposed on July 4th 1975 – I call it Dependence Day (it’s Independence Day in the U.S.A.). In hindsight, I wouldn’t advise waiting so long between the biopsy and getting the results. I found the wait very, very stressful!

July 4th, 2007
D & I went for my 10:00am appointment. I was up to high doh! Mr. L. ushered us in, making small talk on the way. Once we were seated, he started speaking about something – I don’t recall what, when I blurted out “What are we dealing with?” D said later that she was amused at my reaction. He told us that “there is no evidence of cancer.” This was a huge relief. We saw the pathology report and there was no indication of cancer whatsoever found. He said I was statistically “well outside the norm”, so I asked what the standard deviations were. He said more than three. I was hugely relieved. No cancer! D had always maintained that my metabolism is “not normal”: My resting pulse is normally in the region 46-48 and when I strolling around, will hit around 58-60, while my blood pressure is consistently 110/70. So she wasn’t a bit surprised that I was clear. At the end of the consultation, Mr. L. advised another PSA in 6 months.

Afterwards, I again started thinking “Doubling Time!” There had to be an explanation for doubling time, “odd metabolism” or not. In hindsight, I think we missed something crucial at this stage. I think that another DRE should have been carried out, irrespective of TRUS biopsy and its findings. I would also do another PSA check after 3 months. If either or both of these had been carried out, then we could have gained a possibly crucial 3 to 6 months advantage on the disease. Hindsight is a wonderful thing!

I’m just an Engineer, not an Urologist, but, in my job, I regularly find problems that I have to extrapolate on and ask the question “Where else are we likely to have this?” and “How can we detect it sooner?” If we’d adopted this type of thinking here, I would have certainly looked for intermediate examinations/tests.

Urologist Referral

January 2007
I saw Mr. L and he carried out a DRE, finding nothing unusual. He discussed the scenarios and options with me but suggested that my PSA readings “should return to normal” at the next test. Whilst the illnesses around the time of the previous tests shouldn’t affect the PSA result, he felt that my level of fitness and activities might have a bearing on the matter. I was to have another blood test in May, 6 months after the previous one.

Prelude

PSA doubling time is significant. I have a very short doubling time; 15 months. I don’t know where this cancer came from. I’ve always looked after my health. I don’t (very rarely) drink. I don’t smoke and I’ve never taken illicit drugs. I rarely get sick – 19 days off work sick in a 33 year working life. I run – nowadays it’s 30 to 40 miles a week. It used to be over 100, and I’ve been running for 24 years. As a friend and colleague P says; “The health benefits of running by far outweigh those of not running.”

So where did this come from? Well the relationship between stress and illness is well documented. I have my own beliefs. The body reacts to stress and hormone levels in the body are heightened. A prolonged period of extreme stress is not good. 1999 was a noteworthy year for me;

Firstly, our son suddenly developed a mystery illness that was nipped in the bud and short lived
Then I fell at work and broke every rib in my back, just 1½” to the left of my spine. I’m lucky I can walk, let alone run – Thank God!
At the end of October, my elder brother, Pat, died unexpectedly.
During all this, my employment was at risk – the company lumbered on for another 3 years before finally going into liquidation.
The year following Pat’s death was a very traumatic time. I was one of his executors and that created major difficulties.

Following these events, I went through a prolonged period of very high stress – I reckon I was up at about 450 points on one of these life events stress charts. Anything over 150 points is regarded as high and warranting medical supervision. As a cousin said at the time, “uncontrolled stress will eventually affect your health. It will come out somehow”.

How does this fit in with my prostate cancer? Well doubling time is used to predict how one’s PSA is likely to develop. I used the doubling time to work backwards to ‘normal’ levels. Starting at current levels, I reckon that I would have been around normal, general population levels….in 1999!
Of course this is all conjecture and assumption. But it fits the ‘evidence’.

I believe that there is a strong likelihood that this period in my life was the starting point in the initiation and growth of my Prostate cancer.

Tuesday, March 11, 2008

Background

I've been running since July 1984. My original intention was just to keep my weight in check - over a period of 4 or 5 years, it had been gradually creeping up, from my "normal 10 stone 4 pounds to nearly 13 stone.

I started out with the cheapest of the cheap tennis shoes and used to run about a mile in roughly 7:15 and I thought anyone running a marathon was an absolute lunatic.

I entered my first race, a 10k, in October 1984: 46:44 and three weeks later ran 45:21. That Christmas I ran my first of, so far, 25 consecutive Goal miles. That one was 6:21 and remains my slowest.

Early in Spring 1985 my brother-in-law asked me if I would run for a charity in a local Marathon. He had been planning to run it with three friends, however the three friends had all dropped out, injured. I said "OK!" and off I went and increased my training to 15 miles a week. I did actually do one week where I did a 13 mile run and brought my mileage for that week up to 18. Stop laughing as you read this!!

Marathon day arrived and Joe & I set off, running together all the way to 18 miles, until I stopped for water. After that I walked and jogged, to the finish. I went through 20 in 2:48 but it took me 4:10:03 to finish. I reckoned I was beaten by the event - not distance or time.

And so I'd caught the marathon bug, and with it a real love of running. Six months later I ran my first of 15 Dublin City Marathons, on 56 miles a week, in 3:11:17.

Since then running has been a major part of my life and has helped me through many of life's crises. It has also help me maintain a high level of fitness and health........until now.

Monday, March 10, 2008

Beginnings.....

Where do I start?


I suppose with myself and how this came about.


I have prostate cancer.


I'm a 54 (nearly 55) year old runner. Been running for 24 years and never been ill in my life. Never hospitalised and rarely sick. Prostate cancer has raised it's ugly head and previous records are worth nought.



Over the next few posts, I'll outline the journey to date and I'll try to follow that with what I'm doing about it and why. Interspersed, I'll post bits and pieces about my running and my hoped for comeback after Radical prostatectomy - scheduled for May 22nd, 2008.

Why have a blog about Prostate Cancer and running?

Well, when a routine PSA prostate check in May 2006 showed a slightly high reading of 4.3 for a 52 year-old, and a subsequent test 6 months later showed a rise to 4.9, I started checking things out and found little or nothing on the Net relating to runners or running.


I was convinced that vigourous competitive running influenced the PSA reading, in a fashion similar to cycling but found little to back the hypothesis up. Googling found little relating to running after Prostate surgery.