YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Kel Varnsen lives in Massachusetts, USA. He was 49 when he was diagnosed on June 27, 2007. His initial PSA was 4.0 ng/ml his Gleason Score was 3+3=6 and he was staged T1c. His treatment of choice was Radical Prostatectomy. Here is his story:

If you're reading this now, you are probably a lot like I was when I wrote these words - scared, upset and really angry. I've decided to contribute to Yananow today - even though I just discovered it a few days ago - because being able to read the experiences of others in similar circumstances has a strange calming effect, even when things didn't turn out just right. Its kind of like the devil you know, vs the devil you don't. Hopefully my experience can help another male going thru this crap.

First some background. I am a normal married 49 year old father of 3 in New England, where I was born and raised. I've been married for 26 years, and like most parents, worked hard to raise my own kids, give em a good life and get the family the things it needed. I don't smoke (anything), I do enjoy a beer now and then but a case lasts me a month or more so its purely occasional. I exercise regularly, and like the outdoors especially water- I scuba in it (up here in NE, the visibility is only 30ft and 45-65 degrees, so its not for everyone, swim in it, fish in it and boat in it.

My medical history is unremarkable. I do take external Testosterone after a small tumor was removed from my head 25 years ago, and I've always 'managed' my Testosterone levels to be on the low side knowing the effect on Prostate tissue. So it was with a shock that I saw my PSA numbers grow - from about 1.0 ng/ml in my 20's to 2.5 ng/ml in my late 30's to 3-is in my 40's. When it hit 4.0 ng/ml at age 48, my doc pointed me to a urologist. We did some prospective treatments for prostatitis (an infection) with some results but I was quickly advised a biopsy was next.

First of all, biopsy is a word I don't want to hear. I became obsessed with the event. For those of you who haven't yet had one, it is unpleasant - about 5 on the 0-10 scale - but perfectly well tolerated. Its not a natural feeling to have a cigar tube put where the sun don't shine, and the biopsy needles themselves do have a unique feeling - well described as a rubber band kind of snap - like when you snap yourself with one hard. I survived the 12 cores, and the post procedure discomfort resolved after 4-5 hours. If you are holding off of a biopsy - don't. Information is always better than dark space. and it really isn't a big deal - I would go back for another without a hesitation - cause I know now.

About 2 weeks later I revisited my Urologist who announced they'd detected prostate cancer in 2 of 12 cores, representing less than 10% of each core. Another core was positive for PIN, a malformation of cells thought to be co-incident with (but not a precursor to) cancer. CRAP.

I was already smart enough to know that surgery was really the only outcome. Most folks at my age (especially these days) are pretty healthy - active - and interested in life. Radiation sounds good (brachytherapy and external) but no radiation oncologist can tell you what will happen in 20 or 30 years - they just don't know. Plus, radiation weakens the DNA of all the 'good' cells in the area too, making salvage surgery difficult or impossible later on. the oncologist I visited said all of the above.

So I was off to surgery. A couple of words to all of you. First, the outcome of this operation is 90- 99% the skill of the surgeon, and 1-9% you. Find a surgeon who's done this operation before - a lot. In major metro areas, look at the medical colleges and hospitals associated with them. My advice would be to steer clear of the local Urologist, even if you like the guy. Its skill and experience you want, not a pretty face. You're not trying to get married (not that there's anything wrong with that - Seinfeld) - you're looking for a cure. My advice - look for a guy who does this specific operation five or more times a month. You want someone who could do this with a cigarette hanging out of one side of the mouth (figuratively) while watching the Red Sox.

I got my first diagnosis at New England Medical Center in Boston, MA, with Dr. Gennaro Carpinito, the Chief of Urology there. He's great. he's sharp, professional, to the point. He insisted I talk to a Radiation Oncologist, even though my mind was made up. I also got a second opinion with Dr. Jerome Richie at Brigham and Women's / Dana Farber in Boston MA, who I ultimately decided would do the surgery. What made it for me was the ability to see him actually do the surgery. Its not for everyone, but I was able to form an opinion of the man from watching him work for an hour. Plus with 2,500 under his belt thus far, and a rate of 20+ a month, I know I'm in experienced hands.

In any case, don't settle for good enough. There are very competent surgeons out there - find one or two, and take the time to find them. Each doc told me the same thing: You have one body. you make the call. We understand there are reasons that make sense to you. Its not a personal thing.

My surgery is scheduled in 9 days, and I'll be sure to keep folks apprised of my progress. I've learned a couple of things already.

1) You have cancer. its a bad thing. We don't like bad things. Most guys are thinking "I'll never get a hard-on again". That's really the wrong point - you have to get rid of the cancer first. Having a hard on with no pulse isn't fun either.

2) Your experience will be different in some ways. I'm expecting it may take a couple of weeks to get to stability. Don't rush, this is a process, not a step. it can take 2+ years to get completely healed and functioning.

3) Talk to folks - talk to anyone. I've found this board to be useful because its got a wealth of experiences in one place, and I can draw conclusions from reading these.

In any case, I'll be back post surgery.

Later:

Hello again from Kel Varnsen.

Well I'm 9 days away from surgery and, to quote Jerry Seinfeld talking to Kramer " Well, I'm freaking out!!". I think the waiting is worse than the post surgery.

I had written a bit in my earlier post about surgeon selection. Clearly you need to find a surgeon you can talk to, have confidence in, and believe can help you. I think its hard to develop an opinion about someone in a few office visits, so its a challenge. Your're not in a state of mind to be doing profiling, you're panicked and looking for help. So its tough.

One thing I found very useful (it was a bit of luck) was to see if your surgeon has any video on line you can watch. I realize this may not be for the faint of heart, but for some of us, its strangely calming. You can form an opinon about someone pretty quickly as you watch them tear down an engine - you can see if they're confident, careful. You can (typically) hear them speak and react to challenge or questions.

As I mentioned earlier I selected surgeon Dr. Jerome Richie at BMW in Boston MA. I lucked out, because I found three separate videos of him - a total of about 2 hours of watching - and it helped me make my mind up. It won't work for all of you but its worth a google or three to check out all the page hits to read quotes, books and see random video of the guy you're looking at.

(For those of you in the Boston area still looking for a surgeon, take a look at the three links below. They're chock full of interesting information on prostate staging, treatment and alternatives in any case. The last is an actual surgery which may be a bit gross for some, so just listen to the audio if you like.)

a)Living Healthier, Living Longer (from a Harvard program session)

b) Brigham and Women's (you'll need Realplayer installed to see it - a free download)

c) Brigham and Women's (the actual surgery)

OR-Live.com has several hundred surgeries on like so use the SEARCH utility there to see if your surgeon is one of them. Google his name (or her name if there are any) in quotes with the word prostate as in "Fred Johnson" prostate (the quotes make the match be a proper name, versus just any Fred + any Johnson)

Anyway that's it for now. I'm sure I'll be back before my big day. I also plan to bring my PC to the hospital so I may have the energy to respond there too. that's it for now boys.

Later Still:

Another update with more thoughts. Now, we're 8 days out on surgery and I'm really anxious to get this over with.

A couple more thoughts crossed my mind that I wanted to capture for all you guys in the same straights.

First of all, if you're reading this, you've already read several other YANANOW postings and probably several dozen to hundreds of web page and other on line content. Most folks get panicked at the range of outcomes, choices, etc. and what I found (and hopefully you'll find) is reading the ordinary layman's words of folks in the same mess (like mine) is more helpful than focusing on some weird-ass protein synthesis experiment done at Johns Hopkins that is impenetrable.

Second, there are some useful online things if you look long enough. See my earlier post on Video and presentation topics on PC. FYI, there is a cool prostate cancer recurrence 'calculator' built up on the heuristics (trial and error) results of many, many patients. It works for folks contemplating Radiation, Surgery or Watchful waiting.

Check out Prostate Nomogram and see if you can enter the data fields from your own biopsy (or ask your Uro to do it for you).

Its just a math model, so don't read too much into a few percent here or there - but it gives you some sense of where you might be on the larger scale.

Second thought - I've noticed that there aren't many GOLD YANANOW members, and those that are there are frequently fighting with some recurrence of PC. I've rationalized that to be that 1) folks that are 'cured' probably don't contribute as fervently as those still fighting. So there aren't as many entries for 'good' success stories - but its a statistical flaw, not a measure of outcome. YOU ARE RIGHT - IT IS DIFFICULT TO GET THE MEN TO CONTINUE TO CONTRIBUTE AS THEY GET ON WITH THEIR LIVES - ANOTHER ASPECT IS THAT THE SITE HASN'T BEEN GOING FOR TEN YEARS YET

Third thought: I found myself first focusing on the P part of PC. when I finally realized I ought to be focused on the C part. Men - you guys have cancer - real, big bad, man killer cancer.** It just happened to be in your man gland, (and not your brain, which most folks require on some basis). stop focusing on your other head, and get rid of the cancer as soon as you can. Find a good high volume surgeon at a major care center in the city. Don't like him? Find another one. They're out there by the hundreds. Try Boston, or San Fran, or UCLA, or NY, or Kansas City.

Afraid? natural reaction but not helpful. This is fight or flight time. and there's no flight - the C is in you. So don't be afraid for long. Think of C as your enemy, to be beaten into the ground with the tool you select - your surgeon and your energy.

UPDATED

August 2007

 

 

Day of Surgery Thursday August 16. A day I will dread in infamy. I chose the Brigham and Women's hospital in Boston MA USA and my decision was a good one (Thank God for all the hospital choice and doctors available in the east coast of the US. BWH formed in 1980 with the merger of three of Boston's oldest Harvard teaching hospitals: the Peter Bent Brigham Hospital, the Robert Breck Brigham Hospital, and the Boston Hospital for Women. Its not just for ladies, guys.)

My wife and I arrived at 6 am, a half hour after requested but still well in the curve for arriving patients. After screening I was given a bed and the obligatory blue 'johnny' in the post anesthesia care unit. Modern health care these days is fast, efficient and beyond the attention span of the frightened patient at the moment of surgery. Several medical staff with varying positions greeted me, all of which were locked into short term memory and most of which were lost to the fog of later surgery . IV's are set in place, then the first two anesthesiologists show up - Dr. Dan Dietrich and Dr. Mike Connelly who went over the process, the drugs and the likely recovery time. Their demeanor I realized only later was both information and also to occupy my time and help with Anxiety, both of which were achieved.

I was wheeled into the OR at about 7 AM. (Its weird being wheeled into anywhere, cause you have a perspective of the ceilings and high walls that no one has otherwise. Light fixtures. pipes. Conduits. Occasional dirt. And you hear disembodied voices directed at you with no way to look at the speaker, let alone respond.)

More voices greet me - the crew inside the OR - nurses, assistants, etc. I'm sure this was again anxiety relief and also a measure of my response to the increasing intravenous agents being applied. I never saw my surgeon arrive. My next foggy moments are back in the PACU, waking up at about 11:30 AM. No sense of pain or discomfort.

I note two things. My sense of time is way off. Minutes last for hours, and yet as the clock measures hours going by I have no sense of time. My surgeon arrived bed side at 6 PM to explain that the surgery was successful, that both nerves had been spared, that the prostate+seminal vesicles plus other stuff weighed 45g - about 1.6 oz - and that some lymph nodes were also sampled. I mumbled a few questions I don't even recall now, but I'm sure I sounded punch drunk. I thanked him and he left. (How many times must he do the same thing with every one he treats - doesn't it get routine?). He leaves me saying he believes the disease was almost certainly contained in the organ, and that he wants me walking once tonight, and 3-4 times tomorrow. Then he's gone.

My main bed wasn't ready until 7 PM - an hour later- but I had no sense that I had surgery over 8 hours previously

OK, so now it starts. I learn I have a Foley catheter in me. (In medicine, you do something good, they name an instrument after you. This guy Foley must have been a harsh side too- who wants to spend all his time in a bladder?)

A Foley is two tools in one. Its a balloon inflated with Saline via an external injection, and its a drain. The large balloon anchors it in the bladder, at the neck, providing some small traction as well - to keep the surgical joint together (note: these are all my opinions - I never went to medical school) The second function is key - draining your bladder. For some reason, I was thirsty and kept drinking quarts of water. Mr Foley to the rescue. Next to my bed, in a two part bag mated with a measuring cup, was the proceeds of my thirst. Today was Fruit Punch day - the color of the fluid looked like the best that Welches or Zar-rex could muster up.

Next, came the nurses to get me comfortable, and introduce Mr. PAC. a PAC stands for Patient Administered Anesthetic - a push of a button, and you're relief arrives intravenously. Its controlled to limit requests over a certain frequently to prevent abuse. You push more, you get more. Mr PAC was mounted on an IV pole, next to my bed, along with some antibiotic drugs and some saline. I am in moderate pain, nothing I can't deal with but I recall from this post not to let the pain get ahead of you. I make a few punches of the PAC - probably 15 or 20 on day one- and its perfectly tolerable. My body knows its been messed with - I don't want to move my lower unit - there little real pain - just a general sense of discomfort.

Next the menu lady comes, and I pick a few largely water oriented things - like chicken soup, fruit, coffee and crystal light. (I had changed my diet 2 days before surgery to only fruit, hearing about the post op issues with gas and that first BM. I wanted to get a jump start on the diet - I would strongly suggest you guys also do this - Get rid of the fried chicken and Lasagna two days earlier - eat nothing but water based drinks and very lightweight digestible stuff that doesn't form cinder blocks in your colon. You'll thank me later.)

I had asked my family to stay at home, knowing that its only a 2 day stay and not wanting to be seen at a weak moment. My kids insist on coming which ends up being fine.

Day one ends with 'THE WALK'. A lovely nurse (why are they all so lovely and I've got a plastic wand coming out of my pecker.) comes to assist. Now I am not a modest person anyway - modesty is really overrated. And the jonny was invented by a magician, cause it disappears immediately after moving. My family jewels, and my now brown and red bruised private member, speared with Mr. Foley right in the middle of his head. He was trying to retract to new levels of small. Of course I had also been shaved pre-op so the whole thing made me look like I was in 2nd grade again. No impressing this lady with inches of strength today.

I take about 5m to slither off the bed, all of the time spent on not stretching the lower unit. I would suggest guys get used to using a Pillow or even a well placed hand - it relieves some of the sharp pangs from stretching. I finally get out of bed, and stretch to 'full height' - my normally 6 foot stature now reduced to something much less - like 5' 3". I line up behind the nurse and my wife for a quick spin down the hall. My stride is a robust 6 inches, and I feel like I'm 100. It takes a good 90s to go 100 feet. I return to my room and collapse (actually another 5 minute operation) back into bed. My family leaves and I fall asleep. Amazing how much energy I had expended.

The next two days I'll collapse to "just the facts".

1) drink lots of water and fruit juice and watery stuff. It will clean out the bladder and help keep the blood clots flowing out of you.

2) pick your foods carefully. Remember what goes in comes out. And we want those first few experiences to be good ones. I chose carefully. I did pick some sliced turkey and quiche which were cheating a bit but on the whole I ate mostly what your average 8 month old does, in solid form - fruit, vegetables and really easy to digest solid foods.

3) There are gas pains. Remember they peel the back of prostate off of the rectum, dividing the Denonviller's fascia which divides the bladder/prostate from the lower part of your food tube (Note: another name. Denonviller must have been a real people person to get this tissue named after him). The Fascia is a dividing layer of connective tissue that both connects and divides the organs, located over the common area they share. That division area needs to heal. While it does, gas and hard stuff irritate the healing area. So gas feels like you're emitting half inch bolts with nuts and washers attached. Eat light and pick your foods carefully. I found the gas while uncomfortable was infrequent - which I chalk up to my choice of foods pre and post op.

4) Modesty - forget it. I haven't shown my pecker to more women since College. And about as many were interested in it.

5) Walking - do it. The movement moves the gas and food down the "food tube". Plus it feels good when your done. And it keeps your strength up.

6) The FOLEY. Others have written about this and I will repeat my personal findings. You want to keep the end of the foley immobilized to your leg. I was given several "multi purpose non-slip tube holders with non slip loop". (I'm reading the package now. Why didn't someone get named for this medical equipment, huh? Not important? It has to be called a MPNSTHWNSL? OK, so I'll name it. I'll call it the Fred device).

The Foley is not an elastic. Where it goes, your penis does too - usually complaining along the way. The FRED devices are really good cloth tape that attaches to your thigh, and a Velcro loop that wrap around the Foley. The part of the Foley sticking out of you will have two connections arranged like a Y "fork in the road" or an exit ramp on the highway. The "straight thru" path is for the fruit juice you'll be making for export over the next few days, and the exit ramp is for the saline to be injected to inflate and later deflate the balloon.

With both the leg bag and night bag you'll want to tie down Mr. Foley. The arrangement that felt the best was to put a left hand bend in Mr. Foley, putting the Y connection on my thigh. I located the FRED loops (use two FREDs next to each other to get two loops) One loop around the main FOLEY, the other between the two forks in the road to contain the Foley from moving left right and east west.

ASK THE NURSE FOR SOME EXTRA FRED DEVICES FOR HOME. You will need two per use. They do fall off and then Mr. Penis will be VERY ANGRY at you. Put one on either thigh to switch off catheter duty from leg to leg.

7) I found the leg bag really uncomfortable. First its small. Like having a 2 gallon tank in your car kind of small. Two, it is vinyl, which means your skin gets wet from its own sweat underneath it. But you perceive it as piss over your leg. Three, it needs to be removed to be emptied, which means the pants and stuff need to be removed each time I mean, if you like it or need it fine. But I went with the night bag while I was home for the first few days.

8) Plan on sleeping a lot. I slept something like 12-14 hours a day on day two and three.

9) eat light.- remember nuts and bolts and washers.

10) Gas is reduced after a few days. But it still hurts.

11) Sitting down has a new feel. I can now distinctly feel the Foley in the middle of my bottom, and an empty space. I'm sure one gets acclimated over time but it hurts. So I lie down or pick well padded chairs.

Anyway, that is it for days 1-2. I will be back with more later. What a relief to get that over. Soon, incontinence and impotent need to be addressed. But we have some time for that.

Later:

Hello friends I thought I would provide an update.

I visited my uro to have my newest friend, MR. FOLEY removed. That went well. I've been on pads since with no control while walking but ok control at night and while sitting in a chair. I've been doing kegels for several times a day. I swear I can break walnuts with my sphincters, but I can't stop a freaking leak. Most folks have just said, it takes time. I have little other choice at this point.

Got the final pathology report back. I was originally diagnosed as 2 of 12 cores positive for 10% of each core, score 3+3 Gleason, T1c. Path came back regrading as a 3+4=7 Gleason, T2C, with no involvement of any other structures and no positive margins. Interestingly the dimension of the largest section of tumor was 1.6 cm - which makes me feel I should have acted sooner - thats a large sized piece of tumor My surgeon sampled but did not remove local lymph nodes.

Days 3-11 have been spent by me doing Kegels, walking (I'm up to 3-4 miles/ day) and isometrics in bed. My stomach incision caused me to throw my back out as I could not stabilize my back and some other muscle did so and was stretched. That hurt much worse than the surgery. That's resolved itself but I need to get back to the gym for more sit ups and push ups.

Right now the incontinence is what's bothering me now. Mostly cause I can't stand the adult pads - its like fast forwarding to the old age home.

I've budgeted 4 weeks to heal before I return to work and I'd suggest to all the same .

 

UPDATED

September 2007

I'm back to work after 3 weeks, and could have started back in 2 weeks had I needed to. After sitting at home and doing long walks, you begin to go stir crazy. I countered with puttering around in my basement and doing small manual jobs, but after awhile, you need to get back to work.

My incision has become "itchy" which I attribute to the stitches being absorbed. The incision had a bumpy external feel which I guess were the suture knots. The feel is getting smoother. Still have a large 6-7 inch scar, a lot more than the 8 cm length that was advertised.

Incontinence is improving. I am down to one pad a day, and am dry unless I do something "athletic" like vigorous walking, running or mowing the lawn. I've started hitting the gym, doing the elliptical and the stair master, and just playing with sit-ups and the weights. It's remarkable how much a month of down time has reduced my stamina. My thoughts for others are to get back to activity as soon and as vigorously as your surgeon and circumstances allow. It helped my healing and mental recovery. I had aggravated a previous back injury with my inactivity and have been much better off by getting active again.

A word on incontinence. I was surprised how long it took to become aware of the "right’ muscles" to use to control continence. I became aware of two different sphincter muscles - a " big set" that we all have (this is the emergency "I gotta go" gate which is strong but with little stamina) and a small set that I visualized as inside and adjacent to the bladder that seemed to have better stamina. I was dribbling constantly until I discovered and controlled smaller set, which I could control independently. Its hard to maintain control while running so its not perfect. I'm not a doctor, and part of what I say above may be perception and not reality. But I found more control by localizing and controlling the small set from the large set.

Impotence is 100% at 4 weeks. Shit. Further, my "private parts" have retreated into submission, frequently in the "frightened turtle position". Having enjoyed substantial natural gifts in this dimension, I found this reduction in size to be alarming. It's like being two years old again kind of size. Sometimes during shower or early morning I see more length but entirely flaccid. No reaction that I can control or encourage. I've not tried to engage my wife yet as there's nothing to play with. It's very frustrating. I read where it takes time but I'd like more early results to show progress. Thus far I see no progress toward any potency or any erectile results. I plan to talk to my Dr. about external drugs as a bridge in a couple weeks when I return for my "one month" appointment.

I've come to the conclusion that healing "just takes time" and some of what's happening is your body reprogramming itself to deal with the surgery and change in plumbing. Exercise helps, and positive outlook helps too. Just roll with the punches, and don't get too frustrated early on.

 

UPDATED

January 2008

 

January 2008 - 5 months and counting.

An update. First, there is life on the other side of prostate surgery. At 3 months, my incontinence just went away - I attributed it to healing, swelling going away and becoming acclimated to the new plumbing. I must say - for a guy - there is little more disturbing than the thought of involuntary peeing of the pants. Others have said it and I'll repeat it - get the DEPENDS man pads - they're about the size of a small jock strap front but padded - and you'll be fine. I went from catheter to full depends week 3 and 4, then to the man pads until about week 10, and then nothing. Its gradual but you feel yourself getting better and better. Now, I'm fine - absolutely freakin' fine. But I did panic the first few weeks when I envisioned a life of Depends and trips to CVS to get them.

Impotence. Its real. First, your member tries to climb inside you for the first 3 months. Its cold to the touch. Its flabby. Then, slowly, you see a change at 3-4 months. It's a little bigger. Not normal but bigger. Then, you notice some inflation one morning - nothing you can control or encourage - just a little show. At 5 months, I'm seeing real progress although still not ready for an armed missile launch sequence.

Viagra - It did absolutely nothing at all, unless you count a four day headache. I took one and won't take another. I now have Levitra ("Levitate - get it?") and will test drive in a day or so.

Looking back on the first few months now, I have some perspective on the event. For those of you facing this, here's what I observed:

Most women don't quite understand this panic we feel. Our equipment is part of who we are - how we think - its really part of the ego, psyche and ethos all at once. Losing it or part of its function is really troublesome for us.

Yananow and other sites are helpful - talk to as many men as you can - it helps because we've been there and you're thinking about getting there. Contact them - they'll understand and respond. A number of folks have contacted me - and I've been more than happy to respond.

There are more than a few opinions how to treat this condition. Only you can make the call - but understand your reasons and fears and keep them straight. Fear is a powerful emotion but it can be controlled with facts and reason. And when its over, Fear disappears- and facts and reason are left to stand. Find your facts, and reasons, and leave your fears behind..

That's it - I'm looking forward to the rest of this year. As usual, please write with your questions and I'll be happy to respond.

Kel Varnsen

Those interested in writing, feel free to do so at KELVARNSEN*YAHOO.COM (subsitute @ for * in the address - keeps down the Spam)

** THESE VIEWS ARE KEL'S PERSONAL ONES AND ARE NOT NECCESSARILY SHARED BY OTHERS. MANY MEN DIAGNOSED AT PRESENT MAY NOT REQUIRE TREATMENT BECAUSE IT IS FAR FROM CLEAR THAT ALL WILL BENEFIT FROM TREATMENT. SOME EXPERTS SAY BETWEEN 25% AND 80% OF MEN IN THE USA ARE OVER-TREATED.