Dennis
Tomkinson and Joanne live in Alberta, Canada. He was 58 when he was diagnosed
in August 2005. His initial PSA was 9.1 ng/ml, his Gleason Score was 7 and although
he has not stated his staging it seems that it was T2b. His choice of treatment
was Cryotherapy. Here is his story:
This
is a diary of a man with prostate cancer (PCa).
I kept this diary not only
as a reminder for myself of my first major health issue but also as information
for men who have been recently diagnosed with PCa and for those interested in
learning a little something about it.
My name is Dennis Tomkinson, 58 years
old, married with two adult children. I have at this point four granddaughters
who I want to see one day get married. The oldest is currently 4 years old. I
have a long time to live.
I have 10 natural siblings. Six sisters and four
brothers. I am the youngest of the boys all 2 years apart. My oldest brother,
Ken, was diagnosed with prostate cancer in 1992. He was treated using radiation
brachytherapy but unfortunately this was unsuccessful and he suffered with complications
of PCa for the next 13 years. Ken passed away on August 23, 2005. My middle brother
Joe was diagnosed with prostate cancer in 2003 and was treated with conventional
radiation treatments. At this point all his regular PSA (prostate specific antigen)
tests prove negative with counts of well less than 1.0 ng/ml. Second oldest brother,
Frank, passed away in 1994 of heart failure. He was never tested for PCa by either
a PSA test or with a DRE (digital rectal exam). He, like most men including myself,
was too macho to have anyone stick his finger where it don't belong. We will never
know if he did or didn't have prostate cancer. Anyhow 3 out of 5 boys means our
family has a problem and our sons and nephews will be made aware of it.
My
prostate cancer journey started in April 2005. We were on our way home from spending
the winter at our favourite RV spot in Palm Desert, California. We had spent a
few days visiting with our daughter and son-in-law in Vancouver and on our last
day out we had stopped at an RV park near Blue River, British Columbia. Upon waking
in the morning my angioedema, strange swellings of different parts of the body
probably caused by some allergic reaction, had hit me big time. My tongue had
swelled up to fill the mouth and I was unable to speak coherently. Over the past
5 years this angioedema had affected my feet, hands, eyes, arms, scrotum, and
face and had given me terrible stomach spasms in the winter of 2004. I had never
had any of this checked out because the bouts only lasted for one or two days
and disappeared. My wife (Joanne) and I had sort of diagnosed this ourselves through
research on the internet. This was later confirmed by an allergist. Anyhow it
is not dangerous unless it gets into the throat and chokes off your airways and
you can't breathe. Well I figured the tongue is getting pretty close to the throat
so it is time to get this checked out.
I made an appointment with our family
doctor, for May 12. At this appointment, I explained my problem and he got me
an appointment with an allergist for June 9. He also convinced me I should have
a complete physical and we set the date of June 14.
The first thing the
allergist said was he had good news and bad news. The good news was that he would
confirm I have angioedema and the bad news was there was no cure and no medicine
to help it. He then proceeded to the allergy tests which consisted of 30 needle
pricks on each arm. We set up a follow up date for the results for July 26.
June
14, 2005 was my first physical in 20 years. Dumb! If I had swallowed my pride
years ago and had this DRE and PSA done consistently over the past 10 years or
more I would probably have not had such serious consequences as I ended up with.
More detail on this later. He also sent me for blood tests which included the
PSA test. His tests along with those required by the allergist amounted to 22
vials. The nurse said they do 400 people a day at her clinic and they may get
one a month where they suck out 22 vials. I guess if you never go to a doctor
when they finally get you there they really give it to you.
July 8,
I was back at the family doctors for the results of the physical. I was still
at this point dealing with trying to find some help for the angioedema. When I
brought this up the doc said we were not going to worry about that right now,
that I had other problems which may be much more serious. And I thought this angioedema
was pretty serious. He said because of my high PSA count of 9.1 ng/ml, his DRE
exam results which indicated an enlarged prostate on the right side and the fact
that I have 2 brothers who have been treated for prostate cancer we needed to
do further checks. We got an appointment for August 11 with a urologist. I still
didn't take this to serious and was a little annoyed that I didn't get anything
for the angioedema. I was leaving on a 2 week motorhome trip to B.C. with some
friends from the desert and was concerned I did not have anything for my allergies.
We
had a great 2 weeks travelling the interior of BC golfing and visiting with other
friends we had met in the desert and who have homes in BC. I must admit that as
the days wore on I was getting more worried about the hospital (urologist) appointment.
My
first appointment when we got back was with the allergist on July 26. He had heard
about the possibility of prostate cancer and said he was sorry. This was notice
to me that I should start taking this seriously. He also told me that I was allergic
to cats, dogs, dust and birch trees? I sort of knew the first 3 but birch trees?
Still nothing for the angioedema but I did convince him, with my wife's pushing,
to give me a prescription for an EpiPen.
This is something that is shaped like a fat cigar and if you have an allergic
reaction to something that is serious enough to close off your airwaves you stab
yourself in the leg and a needle will insert some kind of chemical [Webmaster:
epinephrine is the drug released] into your body which will immediately
open your airwaves for 15 minutes giving you, hopefully, time to get to a hospital.
That's cutting it close. Hopefully I never have to use it.
My August 11
appointment with the urologist was quick and to the point. After about one minute
of getting to know me he did his requisite finger exam, a DRE for those who don't
like this term, and proceeded to tell me that yes, I did have prostate cancer
and that he could feel a small hard lump on the right front lobe and the whole
right side was enlarged. We needed to take some biopsies as soon as possible.
Well I live in Alberta and nothing in our health care system works quickly. My
biopsy appointment was set for September 21 and to allow time for the biopsies
to be processed we set a return visit for October 5. Almost 2 months to get a
biopsy and the results back to your doctor. Ridiculous but that's the system we
have here.
My biopsy tests were a whole other experience. First off the
urologist had forgotten to prescribe an antibiotic pill so my appointment was
delayed 45 minutes to allow this pill to take hold. I was then put in a small
3x5 foot change room with a nurse. I felt a bit nervous so I asked the nurse if
there was a calming pill she might give me as this was the first time ever in
a hospital for me. She said "You have never been in a hospital before and you
are here for a prostate biopsy." This was fair warning but I never did catch on.
Let me tell you something guys, if you ever have to go thru something like this
and you think the DRE is bad, swallow your pride quick because the prostate biopsy
is 10 times more humiliating. I have heard you can be put out for this.*1
Do it. There is not a whole lot of pain just awful uncomfortable. It took me 45
minutes to calm down after the procedure.
October 5 and I was back to the
urologist. Six needle biopsies had been taken, 3 on the left and 3 on the right.
The left half of the prostate was totally clean. The front lobe of the right half
was cancerous with a 3+4 score, the centre lobe was cancerous with a 4+3 score
and the back lobe was cancerous with a 3+4 score. These scores gave a Gleason
score of 7. The Gleason score is a method used by the biopsy pathologist to grade
the cancer. It has a scale of 2 to 10. I was on the low end of the serious side,
7 to 10.
At this meeting we discussed how serious this cancer was
and what were the treatment options. I indicated we usually spend the winters
down south and could this wait until we got back in the spring. He said I should
make a decision and get something down in the next few months but he would not
recommend waiting six or seven months. I asked him what were the available options
and he said radiation and surgery. He recommended surgery. He did not realize
that we had already done a fair amount of research on available treatments for
prostate cancer. We asked him what he thought about cryosurgery and although he
looked surprised we asked, he did say he had a friend in Calgary who provided
this treatment. I felt this interview was rushed, and although my wife didn't,
the meeting was over in about 25 minutes. I said I would let him know within the
month what I wanted to do.
Within 3 days I called his office and booked
a radical surgery date for November 15 at the Royal Alex Hospital. Later that
day I talked with my brother Joe and he asked if I had even considered radiation.
A few days later I called to have my records sent to the Cross Cancer Institute
(CSI) in Edmonton. The CSI specialises in radiation treatments for all cancers
and is recognized around the world as one of the best. As I had made an interview
appointment for November 28 at the CSI it was necessary to cancel my surgery date
for November 15. I felt good about this as it was going to give me more time to
look into other treatments. In fact within a few more days I had made an interview
appointment with the cryosurgeon in Calgary for November 30.
The CSI had
requested that before I come to the November 28 appointment I get another PSA
test. I was quite happy to do this because in late October I had started on a
heavy program of natural food supplements (Mannetech) with the hope that it would
get rid of this cancer. This PSA test was taken November 19 and showed a mark
of 7.2 ng/ml. I was naturally quite excited about this but was soon informed by
both the radiologist and the cryosurgeon that the PSA can move around a lot and
that I still had to do something about this. I listened to their explanation but
continued my double dosing of food supplements. I wanted this to work; I wanted
an easy way out. I don't think I am any different than any of the millions of
people who are told they have a cancer and hope for a quick cure.
Over
the next two months I learned a ton about the internet and how to search for information.
My wife is a great teacher and she was a huge help during this whole time. I learned
about all the other treatments available for prostate cancer victims and I have
files on each. I will not go into details here but if anyone is interested I am
willing to provide this information, but basic details are available on this site
at Treatment Choices.
I
had decided I was going to make a choice of treatment by December 5. It was close
as I called the cryosurgeon on December 6 to book the January 5, 2006 surgery
date. The reasons I had ruled out the others, which may not be the same for everyone,
are:
Watchful waiting: was not recommended by any of the doctors I interviewed.
I also thought I was too far advanced.
External beam radiation: I did not feel comfortable with the morbidity
rates. I was also told I would need to take a term of hormone treatments to reduce
the prostate size before the 8 weeks of radiation treatments. Total about 4 months
to finish.
Brachytherapy: I did not like the idea of having permanently implanted
seeds in my body giving radiation for I don't know how long.
Proton Beam: The people at Loma Linda were by far the most friendly and
helpful. I went so far as to get my treatment plan and the cost faxed thru to
me. It was not the non refundable US$56,000 cost of the program as much as the
treatment plan indicated I would receive 28 bouts of radiation along with 18 bouts
of proton. I was not aware radiation would be involved at all for this treatment
and although my RV park is about an hour from the hospital it would have meant
driving in every day for at least 10 weeks for the 15 minute procedure.
I
really liked what I learned about HIFU and either of the two procedures I would
have went with except that the Sonablate method would have required a three month
treatment of hormones to reduce the tumour size. Again the US$22,000 was non refundable.
The Ablatherm method would have cost a non refundable US$15,000 but more importantly
I would have required a TURP procedure (trans urethral resection of the prostate).
The usual use of the TURP is to ream out the urethra when a man is having trouble
passing urine (peeing). In my case it would be used to chew up about 60% of my
prostate (reduce it in size from 58cc to 20cc) before the HIFU treatment could
be done.
Right up until the last moment I was going to pick Laparoscopic
Surgery (LS) but both of these surgery procedures, LS and Radical, are still surgery.
I was not comfortable with the idea of sharp knives inside my body, both would
have required four weeks of a penis catheter and the recovery time for a Radical
is two months and for LS about one month.*2 For me these were
all negative.
In the end I chose cryosurgery for the following reasons:
1.
The treatment was available relatively close to my home, in case of any post surgery
problems
2. It was a max 3 hour procedure with an overnight stay in hospital
3.
Other than having needles inserted into the prostate it was a non invasive procedure
4.
The post surgery recovery time was to be less than a week and you are out golfing
5.
There would be little or no pain involved
6. Being continent after the procedure
had the highest rating of any of the treatments
7. The probability of being
impotent after any of the treatments is high. In fact cryosurgery seems to be
the worst in this department; however, being continent was more important to me
than being potent.
8. There was no penis catheter involved after surgery,
only a supubic tummy catheter which would be removed within the first week of
post surgery.
Keep in mind that the only place to get information to compare
different treatments is thru the internet, talking to health care professionals
and patients who have gone thru the different treatments. Information on the internet
is usually supplied by doctors and other professionals who may have their own
agenda. When speaking with doctors keep in mind that they are biased toward their
own speciality (a radiologist will of course promote radiation treatments). Try
to find a specialist who has experience in two or more types of treatments. The
doctor I chose actually was a surgeon first and also a cryosurgeon, in fact his
recommendation to me was I should have surgery but he would do the cryo if I chose
it. The third source of info is former patients and a list is usually available
thru the doctors you interview with. Again keep in mind that these patients are
usually the star patients who have gone thru the program with no problems, either
this or after time they seem to have forgotten any issues being too serious at
the time. This is one reason why I kept this journal, so I wouldn't forget. Webmaster:
and it is why we encourage men to tell of their experiences and post them on this
site - JOIN US.
The
next part of this journal is the surgery and recovery. At that time I hoped that
in one week I would be back in the desert golfing.
One week before my January
5 surgery date I had taken a third PSA test and on the morning we left for Calgary
I called for the results. I had continued to take the double dosing of food supplements
and was still thinking I would not have to go thru with this. It was 8.8 ng/ml.
Jan.
4, 2005............Joanne and I left for Calgary about 2pm. Took Marg (mother-in-law)
out to dinner, arrived at motel at 8pm. To sleep about 11pm.
Jan.
5............awoke at 4:30........gave myself two enemas. That's something
I had never done before. Not fun. Showered and to the Foothills hospital by 6:30
am. Checked in and was getting a spinal anaesthetic about 7:30 am. I do not remember
much until about 2 pm. I was feeling quite nauseous but with no pain. Apparently
I had some reaction to a medicine because by 3 pm I was throwing up and had dry
heaves. I am very loud when I get these dry heaves so I must have scared a lot
of people. A new nurse Carrie came on duty and we tried a new pain killer and
I fell asleep for 20 minutes, woke up as good as new. Shared a room with Lou,
also prostate surgery, second time around for him, and from Edmonton.
Jan.
6.........slept very little last night, not used to a tube sticking out
of my tummy and definitely not used to being a patient in a hospital. We were
checked out early, left the hospital at 9am. Joanne drove home and after a short
stop in Red Deer we were home by 2pm.
Jan 9.........woke
up at 3am with bladder spasms for 5 minutes..........5am again for 10 minutes....6am
came on again real bad for 20 minutes. Joanne finally got hold of a doctor in
Calgary who did not think this was bladder spasms and to take Tylenol 3. I tried
this and it was good until 11am when they were back only worse than ever. 20 minutes
long........at 12 noon the pain was so bad it knocked me to my knees in the kitchen.
I could not stand nor lay, could do nothing to relieve the pain. Joanne called
a different doc in Calgary and this doctor prescribed some bladder pills, Oxybutynin.
Once on this pill I never had another attack.
Jan 10.....We
decided that I would stop the anti-inflammatory pill, Diclofenac (Voltaren), as
my angioedema was getting worse daily, today had moved onto my face. We also thought
the Tylenol 3 with codeine I had in the hospital may have triggered this.
Jan.
11.....doc said in one week I could try peeing. Well today is one week
and I got some dribbles and thru the day and the next day it got a bit better.
Each time I had pain in the penis and at times the pain seem to move pack into
the rectum. Like spasms in the anus.
Jan. 13.......tried
getting hold of the doc but eventually talked to his nurse. We discussed my very
swollen scrotum, blood in the urine and my inability to get a stream going and
the pain whenever I tried to pee. She said to stop with the bladder pills as they
were probably preventing the swelling from going down. She also said to stop trying
to pee over the weekend.
Jan. 15.....had one 2 minute
spasm at 2am, nothing major. I took a bladder pill that night as a precaution.
Jan.
16.....tried peeing again and for the next few days. Still a lot of pain
in the penis, bladder and rectum each time I try. This pain does not feel like
the spasms but more like having acid poured on the bladder and penis and everything
tightening up down there. I also began to develop what I think are haemorrhoids.
Never had these before but once I started using Preparation H it seemed to help.
Jan.
18....I am still having pain when trying to pee and there is at least 100
to 400 cc's of urine left after voiding (yes I measured each time using the tummy
tap and a measuring cup). The scrotum has gone down in size somewhat, now the
size of a large apple and not a grapefruit, but is still three times normal size,
colour is still black and blue. Nothing is painful just a bit of a constant ache.
I finally got hold of the surgeon today. I filled him in on what had been happening
the last two weeks. He did not seem to be aware of my discussions with his office
nor of any of my problems. The first thing he asked was when I had the suprapubic
tube removed; of course at this point I still have it. After bringing him up to
date he prescribed a pill to reduce the swelling (Tamsulosin- flomax) and to stop
attempting to pee for at least 3 days or until the swelling has gone down to normal
size. I still have a fair amount of blood coming out of the penis he said this
is normal and may continue for up to 6 weeks. I wear a men's Depends pad at night
and a women's Kotex during the day. Hey nobody said this was going to be fun.
Jan.
21.......The last few days have been less stressful with not trying to
pee and then waiting for the dreaded pain to hit when I did try. The size of my
scrotum has come down big time to almost normal whatever that is and the colour
has come back. At least from what i can see it is not black anymore. The amount
of blood leaking has also reduced. Now the BIG NEWS! I was determined I was going
to pee this morning and it worked. Guys you don't know what it is like not to
be able to pee until you can't. Nothing like standing up in front of a urinal,
letting it go with no pain. It is 5pm and i have gone 4 times today. No pain and
less than 50 cc's left each time. I am already thinking I can get this tube out
on Monday.
Jan. 22.........Spoke to soon about the
pain. I could not sleep in the bed, for some reason when i laid on my side or
back i had bladder spasm type pains starting in the penis then the bladder and
into the rectum. The only place that was at all comfortable was in my big chair
sort of laid out on my back. In between getting up to pee every 1.5 hours I did
manage to get some sleep. Bigger problem than this happened later half way thru
my shower. I wasn't quite finished when the spasms started. I barely got out of
the shower and hunched over not being able to move, my wife was able to get me
towelled off. This lasted about 12 minutes and the only thing I can attribute
it to was the fact that just before getting into the shower I peed and instead
of stopping when the bladder seemed to have drained itself, like the book says
to do, I pushed 2 more times to get the last little bit out. Hey I was enjoying
peeing like a man again. This pushing thing was confirmed later when........
Jan.
23..........I awoke at 3am with a very full bladder and half asleep went
to the washroom. Don't know why I did this but after voiding my bladder with no
pushing I pushed twice. Soon as I did it I knew it was a mistake. I was on my
knees within seconds and as my wife was upstairs sleeping, not that she could
have done anything anyhow, I moaned and groaned for about 10 minutes until it
stopped. I would not wish this pain on my worst enemy or hey maybe if Bush wanted
to end this war in Iraq he could arrange for all the bad dudes to get bladder
spasms. They would be out for at least 10 minutes and he could round them all
up. Aw he probably already thought of this and thought it would be too much pain
to inflict even on his enemies. I still wanted to get the catheter out but part
of the problem was the style of catheter that I had was real new and the doc said,
after he had installed it, that he could guarantee there would be no doctor in
Edmonton who had ever seen it and although he could explain it over the phone
he would prefer to take it out. He had explained all this to Joanne on the day
of my surgery but I could not even remember him being in the room and I sure wasn't
prepared to let my wife pull it out of my stomach. After talking with the doctors'
receptionist, again the doc was unavailable; I decided to make an appointment
in Calgary to have it removed. I had a lot of other questions and I figured the
only way I was going to get to talk to him was to make an appointment. The appointment
was set for Wednesday, January 25 at 2pm.
For the last 3 nights I have
continued to sleep downstairs in my big chair. When I do sleep I sleep sound.
The problem is every 90 minutes or so I wake up to pee. By the way, do not take
a sleeping pill to help you sleep. I tried this Saturday night and 5 hours later
woke up ready to burst. Had trouble standing up to get to the washroom.
Jan.
24.....Had a decent sleep last night. Still waking up too often to pee.
Good day today with no spasms. Have continual penis pain, like burning sensation,
for about 30 minutes after peeing. All day uncomfortable feeling in the rectum.
I think I now have haemorrhoids. I will get this all checked out tomorrow at the
doctors.
Jan. 25.......We were in Calgary well before
the 2pm appointment and after waiting another 40 minutes I finally got in to see
the doc for the first time since the surgery Jan. 5th. He got me up on the bed
to remove the suprapubic catheter and said I wouldn't feel a thing, which I didn't,
for a second or two. The pain started in the bladder and immediately turned into
a full blown 4 minute spasm. I really didn't want this but seeing that it was
here I'm glad it happened in front of the doc. My feet were on the bed and the
pain lifted my pelvis up off the bed. In the background I could hear the doc saying
that if I could relax and press my butt down on the bed the spasm would ease up.
I had to suppress a laugh because here I was stiff as a board not being able to
even think about moving and he wanted me to press my butt down. He left for a
moment and came back to ask if I per chance had a "spasm enema" as he did not
have anything in the clinic to help me. I didn't' even know what this enema was
but found out that for the past 3 weeks I could have been using it to stop my
almost regular spasms. During this attack the doc kept saying that the spasm would
not last long as he had never seen one go for more than 10 or 15 seconds. After
mine eased up I told him I had never had a 15 second spasm, they were at least
3 to 25 minutes. I said if there was a 15 second spasm I probably experienced
it every time I walked for more than 10 minutes or after every time I peed. He
seemed surprised at this 4 minute one and I told him it was a pretty small one
for me.
We talked for another 10 minutes and he answered a lot of my questions.
He said that the spasms should stop now that the catheter was removed. Hallelujah!
I told him I thought I had haemorrhoids and he did a digital exam after which
he said he could not feel nor see any haemorrhoids and that the prostate was still
quite swollen. He said that the pain I felt in the rectum was really coming from
the bladder and that this should also stop once the swelling goes down in the
prostate. One good thing, I may not have haemorrhoids after all. This swelling
of the prostate could take from 1 to 4 months to disappear. The pain I feel, like
burning, in the penis during and after I pee is caused by the swollen prostate
and the blood clots I get from the bladder. This tends to keep the urethra raw
and will all take time to heal. If I was able to take anti-inflammatory, which
I can't because of the angioedema, all of this swelling would go away a whole
lot quicker. Joanne will check with her natural food supplement guy to see if
they have anything that will work.
He also said that once the swelling
has gone down in the prostate it will sort of shrivel up and be replaced by scar
tissue. I asked if there was any chance any of the nerve bundles would have been
saved. He said definitely the right side would have been destroyed and a good
possibility the left side also. I wouldn't know for at least 6 months and maybe
longer. He said he did a huge ice ball on the right side as that is where the
cancer was and went slightly outside the prostate on the left side to insure that
he got everything. I am glad he did it this way. My bunkmate in the hospital was
in for a second treatment because 18 months earlier the doc didn't give him the
full blown treatment on his one good side and the cancer came back to what was
left of that side. After this second treatment his last bundle is definitely gone.
Second time around you definitely do not have the same problems as the first but
my experience has been 'once is enough'. Get it all done the first time. It is
not worth the risk.
Our trip home that afternoon was great. With no more
tummy tube I was definitely feeling better. We talked about looking for a flight
back to the desert next week.
Jan. 26.......Not
a whole lot of sleep last night. Maybe 4 hours. No major problems just couldn't
sleep. Waking up every couple hours to pee. Doc said this will improve.
Jan.
28......Not getting much sleep at nights, maybe 4/5 hours per night. Still
have some on and of again penis and rectal pains. We have decided to hold off
returning to the desert until some of this has eased up.
Jan.
30.…..As I said before if there is a possibility of complications with
this cryosurgery, I'm going to get it. For the past 2 days I have been running
into problems passing large blood clots. During the surgery there is a possibility
the urethra can be partially frozen and subsequently the blood vessels will bleed
until they are healed. This is where the blood comes from during peeing and leakage
during the day. Until this heals I will need to wear a pad to catch the leakage.
I
called the nurse today and explained that up until Jan. 29 I was voiding well
and expunging small blood clots. Yesterday I had trouble passing any urine, very
small amount each time until about 1pm when after expelling a small amount, a
blood clot the size of the end of my thumb came out and I immediately emptied
the bladder. There was no pain just spooky. From that point on and till this morning
I was not able to fully void again. At 10am I decided to call the doc and instead
got put thru to the nurse. That is when she explained that the blood and the clots
were coming from the urethra and not the bladder. I was hoping there was a pill
or something I could take to break up these clots as I was concerned that if I
couldn't pass one of these clots what was I to do. She said the only thing would
be blood thinners and that was not possible after the surgery. She did say to
make sure I was drinking at least 8 cups of water a day and sometimes sitting
in a warm bathtub a couple times a day would help. If this did not work I was
to get to the ER as quick as possible, explain that I just had cryosurgery and
they would probably insert a penis catheter. I was not happy with this possibility
so drank some more water and jumped into a warm tub.
It is now about 8pm
and I have still not fully voided. Hopefully I do not have any problems during
the night. I will have another warm tub before I go to bed. If nothing else maybe
it will help me sleep thru the night.
Jan. 31.…..did
not get much sleep thru the nite. Up every hour or less trying to pee. Very week
stream. At 3am took a 1 hour warm tub. Didn't help the peeing nor move any clots
but did sleep solid from 4:30 to 7am. At 11am talked to the doctor. He indicated
I would need to have a penis catheter put in to relieve the blood clots. I would
have this for about 2 days. He would arrange for this to be done in Edmonton to
save me the trip to Calgary.
Feb. 1.…..the Edmonton
office called first thing in the morning. We discussed what I had been going thru
and she said that as long as I was partly voiding they would not do the catheter.
YES!!!! I was not looking forward to that procedure. She did say however that
if I was not able to void to get into the ER and they would insert the catheter
to relieve the pressure. Even though I do not have a full stream I am still able
to completely void most times. It is now 3:40 pm and the day is looking good.
Feb.
14.….About a week ago I talked with the doc in Calgary to go over some
of my concerns. Although the rectal pain has almost disappeared I was having,
and still am, some pain in the urethra. He indicated the urethra would have sustained
some damage from the ice ball and the pain was part of the healing process. It
will go away.
I was also concerned about the possibility of 'sloughing'.
This is where dead tissue from the prostate or bladder is expelled thru the urethra.
I was concerned about it plugging me off quickly and having to get into emergency
to get relief. He said that if this happened it would not happen quickly and I
would have lots of time to get on a plane to Calgary to get the 'roto route' job
done. He does not want another doctor trying to fix this in Palm Springs or Edmonton.
Besides it only happens in 5% of the cases and as I have no signs of this sloughing
at this time I should probably not have a problem. Maybe this will be one of the
issues I will avoid.
After this conversation I decided any more recovery
time I needed would be better served in the warm climes of Palm Springs. We booked
our flight tickets for Fedruary 17.
I have been asked, knowing what I know
now, if I still would have picked cryosurgery as my first choice of treatment.
After
reviewing my reasons for choosing cryo in the first place I can honestly say I
would have probably picked it again based upon those reasons, however, when taking
into account the following I may want to reconsider.
The problems I had with penis and rectal pain and recovery time were mostly caused
by my own other issues. I was unable to take anti-inflammatory because of my angioedema.
Not being able to take anti-inflammatory slowed down the healing process of the
urethra and was not able to speed the process of reducing the swelling of the
prostate. I would have needed anti-inflammatory drugs for every other treatment.
The bladder spasms were caused by the catheter. Other than radiation, all treatments
made use of a type of catheter. I still preferred the tummy catheter over the
penis one.
My sickness in the hospital was again a reaction to an anti nausea pill.
And last and most important was my stupid decision to not get annual checkups.
This would have been a simple PSA and DRE test. By the time the cancer was noticed
the tumour was very large and required a more aggressive treatment. All the treatments
would have required some type of hormone or TURP to reduce the size of the tumour
before the treatment started. Only cryo did not require some type of pre-surgery
treatment. However because of the larger than usual tumour a larger than usual
ice ball was needed. This caused more damage to the urethra than was usual thus
taking a longer time to heal.
I seem to be totally continent, other than
some light blood spotting, which was most important for me. I expect once the
urethra heals the blood spotting will stop. I also have a constant ache which
feels like biting. Sometimes sharp enough where I stop to catch my breath. This
is the urethra healing.
I will have another PSA test and meeting with the
cryosurgeon in April. I will update this journal at that point.
If you
have managed to get through this short book and have found some interesting parts
please pass it on to any man or woman you feel would benefit from reading it.
If there would be one person who decides to get a routine physical exam after
reading it then it was well worth exposing some very personal stuff.
First
PSA test and meeting with cryo surgeon post surgery. I had my blood test for PSA
taken in Vancouver on April 28 and so knew my results before the meeting. The
results : <0.01 ng/ml Needless to say we are very happy. Doc says that the only
reason they show <0.01 is because they cannot measure 0. So basically at this
point the cancer is gone.
Today I still have some 'biting aching' feelings
going on and an area that is numb but at the same time overly sensitive to the
touch. Doc said that this is all good and these problems are an indication that
things are healing. Could take up to a year to completely heal.
I have
no problem with leaking or being incontinent. I have been like this for at least
one month.
I do not have haemorrhoids. Those problems have disappeared.
Potency has not returned. Doc says it could anytime up to 2 or 3 years
later. Maybe never. We will see. I knew this going in so I am not too worked up
about it. However I will say that if you need to make a decision regarding impotency,
make sure you know what being impotent means. It does not mean that you lose desire.
Suffice to say that I am struggling with this but if you would like to discuss
this further I will on a one to one basis. Just email or call me. At this point
I do not feel comfortable in discussing this on a very public diary.
Doc
says I need PSAs every six months for the next three years and every year after
along with my annual physical exam. Something that I now will take serious. I
hope to give further updates to this journal at each of these points for years
to come. Hopefully many, many years.
I am willing to be a prostate cancer
mentor to anyone. If you or someone you know are dealing with prostate cancer
and would like to talk about it or have some questions please feel free to contact
me.
Had
my 2nd psa taken post cryosurgery October 14, 2006. Family doc ordered it along
with tests and a physical and forwarded the results to the urologist/cryosurgeon.
I do not think I will need to meet with him as the test came back with a count
of 0.04. Up a hair from May but basically negligible. Doc says they won?t get
excited unless it reads above 0.10. As I have not received a single call or inquiry
on my health from the cryosurgeon it will be interesting to see if he calls once
he receives the latest results. My one year check up with him I will do in april
2007. By the way did you know that you still get the digital exam even if you
no longer have a prostate. They check the colon this way. I guess that is the
one test we will never get away from.
Funny
how these major health issues are now showing up in my life. I knew from my first
physical last year that I may have a high cholesterol problem (count of 3.2).
Well this year it is 3.7. This combined with the fact my 4 brothers have all had
heart problems means I have to do something about this. Doc wants to put me on
Rosuvastatin for the rest of my life. I have an appointment tomorrow with a natural
food doctor (herbalogist) to see if there is an easier way on the body. Maybe
I need to look around for a heart web page to publish my next journal.
Back
to pc info. For those of us who get head sensitivity problems after the surgery
I found 2 things that helped big time. Firstly I went from boxer to bikini style
under shorts 2 sizes too small. These bundled stuff up and held it all in tight
to the body. Secondly I bought and wore a hockey cup for the period of time, maybe
4 weeks, when it was overly sensitive. A bit uncomfortable to wear all day long
but better than walking around with my hands in my pockets trying to hold my pants
away from rubbing. Even wore it a few nites to bed as the weight of the covers
were even giving me a problem. This extreme sensitivity has gone on for at least
4 months although I now only have to wear the tight shorts. I have 2 almost new
hockey cups for sale. Cheap! I would start selling off the slightly used bikini
shorts but I'm thinking if I lose a few pounds I could look pretty good. Which
brings up another issue.
Impotence!
Potency
still has not returned. As one of the fellows who emailed me said he has a very
understanding wife. I guess I do too but in all honesty guys I think we overestimate
the importance of sex to our partners. I over heard a conversation recently where
one lady thought my wife would be the envy of women around the world. Any activity
we have in that way is centered on her enjoyment As there is no pressure to please
me the focus is all for her. It doesn't happen often but when we do get amorous
I really do enjoy it.
As
I mentioned in my May update the desire is still all there but there is just nothing
physical on the outside that happens. Surprisingly it is not overly frustrating.
I
have had 2 or 3 what I will call dry dreams. Similar to when you were a kid and
the testerone is running high and in your sleep you wake up with wet bed sheets
after a dream about an encounter with your favorite girl. Well same things with
a dry dream except there are no wet bed sheets and there is definetly nothing
hard happening. The first time this happened, sometime in June, I woke up thinking
wow this did not take long to get this back. Well after feeling no wet spots and
definetly nothing hard to the touch I thought it was kind of spooky. After the
last time I am getting kind of used to it and if that is what it is going to be
like I could be ok with it. No mess and all. Now if the hardness returns does
the ejaculate too? I don't think so. Maybe one of you guys who already know the
answer could clue in me and others new to this experience. And we will thank you
in advance.
I
have not resorted to any appliances yet. Can't get my head around it. Scares me
to think of sticking a needle into the little fella. Or even using a pump and
rubber band. I would think it would kinda take the edge off. That's how I feel
today. We'll see how I feel next spring. That's when I am due for my next PSA
test and GOD willing I will still be here to give you all another update.
By
the way, when I published back in May and volunteered to be a mentor I thought
I may be swamped with e-mails. I have received only 2 inquires both in early August.
I am still in touch with a guy who had cryosurgery on July 25th. He seems to enjoy
knowing what he can expect in his recovering and I enjoy the contact because as
you can see I like to ramble on.
Stay
tuned for the next update in May, 2007.
May
4, 2007 pc update
Good news! May 4 had blood taken and the doc called a
week later with results. 0.01 ng/ml so it looks like we got it. Nice birthday
present. My 60th is June 20.
Cholesterol was also down and back in line.
Doc figures it was the drugs he wanted me to take. I never filled the prescription
instead took natural herb pills from my herbologist.
Still wearing the
bikini shorts. Not because I lost some weight and look good but still have some
sensitivity problems. Its getting better but the problem is still there. It will
be interesting to hear what the urologist has to say when I see him.
Potency!
Becoming a bit of a head issue now so I don't feel comfortable with putting it
all out there for everyone to read. I wish I had really understood what this was
all about before I picked cryotherapy.*3 I may have made a different
choice of treatment. If you are dealing with this today or are worried about it
and going into treatment drop me an e-mail. I will tell you where I am at and
what I am doing about it. I am currently communicating by e-mail with six more
folks since last update. With each of them this issue has come up and we talk
about everything. Nothing is taboo.
By the way. Two of these six contacts
are wives of men who have prostate cancer . I hope you all have such caring partners
as these two ladies have shown to me.
I have very recently had a close
friend be diagnosed with prostate cancer After doing research and making his choice
of treatment I asked him if he had considered cryotherapy. He said after reading
my story he did not go any further with it as he was not convinced the problems
I had were not because of the treatment I chose. Interesting. I hope my story
does not turn people off of considering cryotherapy as a definite option. I still
believe it is the most successful treatment for getting rid of the cancer permanently.
It also has the best odds for being continent. I am happy on both counts.
There
is a new treatment in the works for prostate cancer . It is called TOOKAD. A certain
drug is injected into the blood stream then a needlelike probe with laser light
fibres is turned on near the tumour. The light activates the TOOKAD to cause the
blood vessels to clot around the tumour and choke off the blood supply. Apparently
it works anywhere in the body and on any size tumour. It is in trial stages now
but looks very promising for possibly all cancers. Want to learn more? Google
TOOKAD. Or, better still go to the link to Photo
Dynamic Therapy (TOOKAD is one of the drugs used in this type of treatment)
or read the piece I wrote about this
option.
Well kids, that's all for now. Be good to each other.
In six months look for another update..
Update
January 24, 2008
I had a bit of a scare in late November when I had a scan
done on my lower back because of lifelong back problems. The scan showed I now
have 5 protruding discs, up from one 12 years ago. But it also showed cysts on
my kidneys. The one on the left kidney was 5.9 mm and on the right was 1.8 mm.
These tests were done at our winter home in La Quinta California and as I was
going home for Christmas I would get it checked out further then.
My family
doc sent me to a urologist and he said that 40% of the population walk around
with this type of cyst and to not worry about it. As the one cyst is larger than
normal he will do an ultrasound when I get back in the spring. I am not worrying
about it.
I am having daily treatment for the back problem and I no longer
have the constant back ache. I wish this new equipment was available 40 years
ago when I first did damage to my back.
Now, I also had my PSA checked
at Christmas and as I haven't heard from the doc I am assuming the test was all
good. Again I am not to worry about it. Life is good. Taken up a new sport, Pickleball,
and recently made a motor home trip to Mexico with friends. Drank margaritas and
ate 7 inch shrimp on the beach. Great time.
Often I meet new cancer friends
thru YANA and although we have never personally met I do consider them friends.
I forwarded the YANA page to a friend here in the motor coach park and he will
forward to his friends who are now dealing with prostate cancer. We may never
know whose lives we can affect by not being afraid to project out a bit.
When
I was in Mexico a friends brother passed away. He was 62. He started with prostate
cancer the same time as I was diagnosed. He had read my story. It went to his
lungs and when they found it in his brain they called it lung cancer. Life is
so short. We should all have time to go to the beach with friends, drink margaritas
and eat shrimp.
Take care of each other,
Dennis
My
email address is dennis.t@telus.net. Write
'Prostate Cancer' in the subject line.
*1
This is based on Dennis' personal experience. Many men have reported no problems
with biopsy procedures. Others have requested or been given a local anaesthetic.
It is certainly recommended to make this request.
*2
Again this reflects Dennis' personal views. The experiences related on this site
by some men who have had both forms of surgery differ considerably from what he
relates here, especially those who elected to have Laparoscopic Surgery.
*3
Unless focussed cryotherapy is used, which is aimed at nerve sparing, but increases
the chances ofsome tumour cells being missed, the erectile nerves will be destroyed,
along with the other cells and erectile dysfunction will occur.
