Paul
Tweedy and Betsy live in Indiana, USA . He was 59 when he was diagnosed on February
4, 2010. His initial PSA was 15.1 ng/ml, his Gleason Score was 3 + 4 = 7 and it
seems he was staged T1c clinically. He is undecided and waiting to meet with the
doctor on March 5 when the bone scan results are available but leaning towards
robotic-assisted laparoscopic surgery as to his choice of treatment. Here is his
story. (Just an aside...Paul's wife, Betsy, is typing his story. She had a
total right hip replacement in December 8, 2009 and was busy recovering through
Christmas and early January 2010, and now healed up and pain free, she is totally
focused on Paul's Problem Prostate!)
In November of 2009, Paul went
to the Veterans Clinic in Scottsburg, IN for his worsening asthma symptoms. The
doctor gave him a complete physical which included a PSA blood test. His asthma
was improved with a change of medicine. He was encouraged to lose weight, being
6' and a husky 280 lbs. And he was asked to have another blood test in December,
2009. The Nov. PSA results were 13.5. December's PSA results climbed to 15.1.
At this point, the clinic's urologist, Dr. Holt, had Paul come in for
a January 2010 exam which included a DRE (Digital Rectal Examination). The results
were positive. Good Dr. Holt strongly advised Paul to have a biopsy done. Paul's
biopsy was set for February 4, 2010 at the Urology Clinic at the Veterans Hospital
in Louisville, KY. The biopsy wasn't NOT fun...Paul explained that the warmed
blanket that was draped over him was semi-comforting but he doesn't want to repeat
the biopsy experience, if possible. The sound of the "gun" clicks and the accompanying
needle pain was vividly described to wife, Betsy later on. [There
is no excuse for any man to feel pain with a biopsy procedure. Doctors should
provide local anaesthetics automatically. If they don't these should be requested.]
Betsy came along to drive him home but he insisted on driving and
even revived sufficiently for a stop at McDonalds for a breakfast. He entertained
himself and Betsy by rating the ebbing pain of the biopsy on the ride home.
The
biopsy results were received by Betsy on the phone from the nurse practitioner
working with Dr. Holt. She explained that all the 8 cores contained cancer, 60-70%
and that both nodules involved. For some reason, the Gleason Score was not given.
A bone scan was the next step. Betsy told Paul the results when he got home from
work. Both were quite shocked to hear the word cancer. The Veterans Hospital set
the bone scan for February 25 and an appointment with Dr. Holt and his team for
a discussion of Paul's treatment options on March 5th.
In the weeks since
the biopsy results and before the bone scan, with encouragement from his wife,
Paul requested his records from 2007 visit to a local urologist when he had blood
in his urine. A cytoscopy and a CT scan...nothing but a benign renal cyst showed.
But his PSA was 9.2 in Jan. 2007!! Paul seemed to think that the results were
due to BPH (Benign Prostate Hyperplasia) and did not follow up with more blood
tests until the VA clinic got hold of him in 2009. Betsy didn't get the memo on
the 9.2 PSA or he would have gotten follow-up blood test before that. Betsy also
called back to the VA urology clinic and obtained the Paul's Gleason score of
3 + 4 = 7.
As we have been doing the research on Paul's Problem Prostate.
we are thrilled to find YANA and overwhelmed with the wealth of information, support
and links to other sites. Thank you to all the men and their families who have
shared their experiences and knowledge. We will update OUR story when we have
meet with the urologist on March 5th.
Somewhat
after March 5, Paul and Betsy sent in a jointly written and very full update -
better late than never:-)
March
5th 2010 Consultation with urologist.
Betsy:
Up early, a hour drive, terrible parking to begin with. We enter a small exam
room. Doctor was busy reading Paul's records as we sat waiting in the room with
an intern in attendance. Four of us in a small exam room. Intern had to lean up
against the exam table as the doc had the desk/stool and Paul and I had the two
chairs. It was her first day with the doctor and she was just observing. Doc stayed
busy with the computer based records for quite sometime. Paul and I tried to jumpstart
the whole conversation by asking specific questions but felt like doctor was very
unprepared for us. As this was our consultation visit, we were expecting a concise
review of all the test results and then some direction of what to do, options
laid out, suggestions. Finally our VA doc did reassuringly state that the tumor
is contained and it was highly unlikely that it had spread anywhere (good news!!).
But he is having Paul do an additional CT scan on the lower back to reassure everyone
that a highlighted area in the bone scan on Paul's spinal cord is due to a previous
injury, not cancer(still some worry about that!!!) The doctor's recommendation
was to treat prostate with radiation or surgery. So then we asked for recommendations
of where to go for those procedures.
This is where the consultation got
tricky. The VA doc only recommended VA facilities - a VA radiation facility in
Louisville. But he said the only robotic-assisted surgery (Paul's preference)
VA option would be in Pittsburgh, PA! Out of the question due to distance (9 hrs,
1 way). Interesting fact came out in conversation, this doctor had surgery for
his PC and had it done by a private surgeon and not with the VA. I gave Paul "the
look" that said "Don't agree to anything until we talk about it." After 29 years
married, he can read my looks pretty well. So we left with an only an appointment
for the CT scan and nothing else.
On the ride home, we discussed how we
were discouraged with the quality of the consultation and that we needed more
from our doctor. I wanted him to consult with someone else that was prepared and
focused on him. He felt the same way. With Paul's "go- ahead", we made an appointment
with urology specialists group in Indiana to see what we can do in Louisville,
KY and southern Indiana. We will have time to get Paul's records sent over to
the next doctor. The VA doc didn't seem to be too worried about Paul's problem
prostate and assured us that we have plenty of time (several months) to decide
what to do.
Paul began going to the VA hospital in Louisville when he
did not have med. coverage last year. I had wanted to consult somewhere else from
the very beginning. I am not against VA facilities. They have been good so far.
Until this consultation. But now that his work's medical coverage has kicked in
from the job he has currently. We have choices and we are determined to consult
elsewhere and have more options for local facilities.
From the very beginning
of Paul's diagnosis, we had our eye on checking out the Metropolitan Urology group
close by in Southern Indiana. Before we posted here with this forum, I (Betsy)
contacted the two Indiana residents who had posted their PC experiences on YANA.
I asked if they had heard of the Metropolitan Urology Group in Jeffersonville,
IN. This was the interesting answer in a response to one of my e-mails! Ted
Larrison wrote me "...As you know my surgeon was Dr. Koch at IU (Indiana
University Hospital) and I highly recommend him, however the resident who actually
did the majority of the surgery was Dr. Goodwin who told me that he was headed
to join Metropolitan in Louisville in June or July. Koch also told me that Metropolitan
has a very high number of urologists who came through this program."
Dr.
Goodwin is the one we asked for Paul's consultation. The group also has a variety
of other physicians that specialize in other treatment approaches so a wide range
of information and choices. It just interesting how the puzzle pieces fall into
place - or at least you get an indication of the direction to go in. We will see
where this all leads.
Mid March 2010 MRI or CT
Betsy: Paul
went to the VA hospital for his CT scan of his back today (1 hour each way, to
and fro), a follow up to cancel bone scan concerns. Betsy stayed home to babysit
grandson, (busy 2 1/2 yr old). Betsy gets call from radiology dept nurse (scheduling
appointments), she says the radiologist reviewing Paul's case would prefer to
have an MRI done instead. Reason: Reserve the radiation exposure for future treatment.
Betsy calls Paul who is en route for CT appt. He goes on to hospital and reschedules
for MRI , not until end of March, earliest opening. He also requests that if there
is a cancellation in radiology can he be worked in. He states to the nurse that
he really needs to have a miracle when it came to scheduling. Taking off from
work can be tricky. The sooner the appt, the better. And he starts back home.
Then Betsy gets another call from radiology - they have a cancellation for appt
at 4:00 THAT afternoon. The nurse says, "I think this is his scheduling miracle!"
So Betsy gets Paul on cell phone. Half way home by now. He turns around and heads
back to Louisville. He called me again about 4:30 after the MRI and on his way
home. Whew! What an afternoon!
Later in March 2010 After MRI First
consultation with Radiation Oncologist
Betsy: Another interesting appointment
with the oncology dept. at our local VA Hospital. Although, we debated not go
forward with treatment there, we decided that we would meet with the rad/ oncology
branch which is really staffed by docs from the James Brown Cancer Center, Louisville
KY. We were scheduled to meet the oncologist, Dr. H. and also find out the results
of the MRI done to confirm all was well in Paul's back. Two hours of sitting in
waiting room from the scheduled appt. time to actual appointment time. Good camaraderie
amongst patients, we were the youngest in the room, small waiting room, full,
and watching TV. Then VERY young doctor (NOT Dr. H.) comes for us. Into exam room.
Our first question was about the MRI results. He says, "Wait, I have a few questions
and then we will discuss results. "Grrrr". He runs through a series of basic health
questions. Prods Paul's neck and listens to breathing and heart. .(He is practicing
his "patient encounter" techniques, I think!!!) Then... finally after about 10
min, tells us that there was nothing to worry about with the MRI results, neg.
But he wants Paul to NOW have a CAT scan of pelvic/ trunk to determine where the
tumor might be - spread, size,etc. When I asked for possible radiation approaches.
He says that would be a discussion for later when the scan results came back.
Told us to relax and be patient. Appt. over in about 20 min. So the CAT scan is
set for next Friday. Then a date will be set for us to meet with the actual Dr.
H at the Brown Cancer Center.
Early April 2010 Consultation with Surgeon.
Betsy:
We went to a consultation with a Dr. Goodwin As a urologist/surgeon, we knew that
he would probably make a case for surgery. He asked Paul a lot of questions, looked
through all the papers we brought of every step so far. Gave us his recommendations
and his concerns. He mentioned the 8 of 8 cores being indicative of close margins
of escape (our terminology). He did say that he was concerned about the nerve
sparing issue due to the possibility that cancer was located in all areas of the
prostate and the "area" he would have to remove to affect a good outcome. He drew
pictures to demonstrate. Paul really appreciated that. Offered to set up a meeting
with an oncologist in their group if we wanted information on different treatment
approaches- radiation, hormone, etc. He also explained to Paul that dependent
on the pathology report, more treatment may be called for.
It was interesting
to watch Paul take in all the information that I had been talking about during
the last few weeks and ask questions of the doctor also. It was good to see Paul
being proactive. After a thorough unhurried discussion, I think Paul has decided
to stay with Dr. Goodwin. I still want to keep the discussion going with Paul.
Discuss the surgery results, what the surgery will leave us dealing with. Make
sure!!!!
Early April 2010 CT Scan done also!
Betsy: Paul
has a CT scan of the trunk and pelvic area on Friday at the VA hospital. Those
results will go to Dr. Goodwin's for review. We will be contacted by his staff
to set up a surgery date. I'm keeping a list of any other questions that pop up.
Interesting
connection: Our original urologist, Dr. Holt (in his 70's) was a med. student
years ago with Dr. Goodwin's father, a retired urologist. The world of urology
is a small one!!
Early April 2010 Second consultation with Radiation
/ Oncologist
Betsy: Paul and I had his consultation with oncologist,
yesterday. Radiation treatment was of course explained as the way to go. Paul
had already almost 100% decided on the surgery but we wanted to hear the other
option also. This was an interesting visit: Paul, myself, nurse with another nurse
(shadowing her for training), an intern, and then the doctor himself. What a crowd.
It was a lengthy consult. with lots of information. And after I left the room,
both intern and doc pulled on the gloves and gave a DRE!!!We did get the pelvic/trunk
Ct scan results. There are two noticeably enlarged lymph nodes located on each
side of the prostate but both are equally enlarged. Seem too symmetrical to be
enlarged by cancer (as explained by the intern). Cancer rarely grows equally.
We had a quiet (rather tense) ride home absorbing the visit's information. I didn't
push either treatment option. Paul stated later that night that he was still going
to have the surgery.
Radiation would mean 1 hour drive each way and 1 hour
of parking, checking in, setting up rapid arc scan and then the scan daily for
8 wks (Monday to Friday). If Paul wanted to do that, we would find a way. It would
involve about 3 hrs with the drive time everyday. He has two jobs...autoparts
store and pastors a small Methodist Church. Our lives whichever treatment he would
choose, will be disrupted for awhile. Cancer happens in the middle of our regular
lives and sometimes seems to invade so much!
So today, a packet arrives
from the urologist / surgeon with dates for pre-op visit, surgery date, etc.,
etc. We are sure heading into a whirlwind of activity.
April 2010 Decision
for surgery
Betsy: After a lot of deliberation, discussion, consultations,
fear and worry (since higher PSA in Nov'09), Paul decided on surgery to deal with
his PCa. Paul's date with Dr. Goodwin and his robot looms ahead of us on May 13th.
His pre-op tests were completed on Friday. I am thankful for the information,
experiences, feelings, etc. that you all have so openly shared: it just helps
so much.
I'm making a list (thanks for the great tips & lists shared)
and checking it twice to get everything prepared for taking care of hubby after
surgery. My secret weapon is my "emergency room medical tech/orderly" dear son
who lives close by. If things get rough, I'll call in my son. It has been interesting
to hear my son speak authoritatively to his dad about losing weight before surgery,
catheter care, and other medical issues. And Dad listens!! Listening to me can
be a different story.
May
12th 2010 Pre-surgery
Betsy:
It is the evening before surgery and Paul is waiting for the "bowel prep" to work.
Our little bag is packed and by the door. Clothes are put out for the morning.
We've been making a few phone calls to family and arranged for the dog to be checked
on. We will be off early in the morning to get to the hospital (an hour drive)
by 7:30. Surgery by 10:00. Every once in awhile the "butterflies in the tummy"
hit for us and Paul is actually laying down in the bedroom, which he often does
when he has things on his mind. I'm sure he'll be up and in the bathroom pretty
soon.
We are both anxious but sure that this is the right decision. Yesterday
after work, he did some heavy duty yard work and put in his garden and finished
up some odd jobs he had put off with no "encouraging" from me! I know he feels
the pressure and is concerned.
May 13th 2010 Thursday Surgery
Betsy: Whew! What a whirlwind of crazy activity since Thursday (may 13th).
Hard to believe the surgery is over and we are back home recovering. Out early
on Thursday morning( by 6:00 am) to get to the pre-op time of 8:00 and anticipating
early morning traffic into Louisville, KY(1 hour drive away). Wonderful staff
in the surgery prep area. Everything off but the socks and into his gown. One
sock (he pick them out!) had a huge hole in it so got a fun gray pair from hospital.
Paul's surgery was moved back to 11:30 (unscheduled emergencies in the queue).
They kept him comfortable and calm with a great sense of humour. Me, too. Our
pastor friend, Mike, came by for a few minutes of prayer during this time. Paul
prayed for him, too (pasturing even on his pre-op bed). Then Dr. Goodwin came
in to touch base with us about what he hoped to do: Cancer out, continence control
but no nerves spared: he felt it would be to much of a risk. He had a physician
from China with him to observe the robotic procedure. Paul was given a dose of
"feel good" meds. And the last thing I heard was Paul giving his name, birthday
and saying dreamily,…born in Taunton, Massachusetts,….as they wheeled him off.
I
camped out in the surgery waiting room.
3
Hours later Dr. Goodwin came in and met with me in a little side room. He was
pleased with the outcome. Said that the prostate was " more attached" then he
expected. More of a challenge to get out and that he took "large margins." Lymph
node biopsy checked and found negative for cancer. Pathology report by this coming
Wednesday and we will know where the cancer had gotten to!!
After the
doctor left, two friends showed up to see me through the next 3 hours (!!) of
recovery room time. I was ready for company!!! My nerves were kicking in about
the 2nd hour of his surgery recovery so it was good to have them there. They both
worked in the medical field so had some good comments to make to calm me down.
Paul's blood pressure and pain control were issues for the recovery nurses. Finally
I was allowed back there to be with him; another hour to wait for a room (probably
why they allowed me in there, he had be asking for me for awhile). Room hold up
due to emergency admittances. Finally up to his room and settled by around 8:00.
As you have all experienced, nights are busy in the hospital. I dozed
in the recliner chair in his room, Paul slept in drugged peacefulness unless his
vitals were being checked. He walked that night and in the morning several times.
Early, at 6:45 am, Dr. Goodwin came by and checked Paul over. We will see him
on Wednesday for catheter removal, etc. and path report
Paul:
Great staff in pre-op, they kept my spirits high, with fun and prayer. An ordinary
day for them but an unusual one for me. Knowing my body would never be the same,
I do remember thinking of making an escape (in gown and socks!) but the support
of wife, staff, pastor settled me down. Last thing I remember was settling to
the operating table and seeing the doctor looking over instruments and the "long
armed spider" robot beside the table. Post-op: intense pain/discomfort from bladder
area, finally become used to it and became distracted with my new issue-gas pains.
May
14th 2010 Friday Recovery at Home.
Betsy: Headed home by around 1:00(afternoon).
Paul is a big guy at 265lbs and 6 ft. He didn't fit comfortably in the passenger
side very well. I have a feeling that no car would have been comfortable. Felt
every bump and corner. Had to stop for a train crossing of course. We have never
met a train at that crossing before!! It was a loooong hour drive home.
HOME!
Yeah! Settled in and Paul is happily shuffling around and then laying down or
sitting in his comfy chair. Between incisions and catheter no position is great
for to long. So there ends our Thursday medical marathon: 2 hrs in pre-op, 3 hrs
in surgery, 3 hrs in recovery and 1 extra hr waiting for a room to open, then
settling into hosp. room for overnight stay.
Friday and Saturday: Paul
has really felt gas pains. The catheter has not bothered him too much. I think
he has been focused on his sore tummy and gas pains. I may hear more about the
catheter when he gets over the gas and has a bowel movement. Fun times!!!
Sunday:
He was up early with gas pains. Trying to walk it off and has some gas-x. He is
sleeping on the couch. He has had success "pooping." This guy has kept me quite
busy. I did run a word check on "gas pains" on YANA.
Paul:
Recovery for me was all about gas pain; probably a stomach flu, Betsy had the
similar symptoms 5 days later.
About
a week later, Recovery continues:
Betsy: Paul's system is finally settling
back to normal. He had a miserable 6 days dealing with his bowels, painful gas
from the rib area and down. Read someone on YANA who wrote, "don't underestimate
the pain of gas," and someone else described it as "nuts and bolts" rolling around.
The catheter was almost a none issue in comparison to the digestive system problem.
The catheter is gone, and the other has at last "passed". Thanks for the suggestions
for help in that area. We had the grandchildren (3 & 5 yr olds) for the weekend
since our son was working night shift at hospital and d-in-law with a college
group trip to Europe. Paul weathered it all pretty well. He is still a little
tired. He is finding that he has to watch his liquid intake and go to the bathroom
on a regular schedule; can't wait until he is having to run, now using the guards
for men. Depends on Sunday when we were out all morning and early afternoon just
to be reassured. But I think we are being overly careful; he wasn't too wet. He
has commented on the "length" difference. I'm thinking that it won't be so "withdrawn"
once things heal up and relax. So the healing continues. We can breathe a little
more easily.
Prostate Pathology report:
Betsy: We have
the pathology report from Paul's surgery.
Some key points:
An upgrade
of 4+ 3 = 7 (rather then 3 + 4).
Tumor location: Bilateral Gland Involvement
at the Apex, Mid, and Base
Tumor Quantitation: About 50% of submitted tissue
involved by tumor
Extent of invasion: Carcinoma is organ-confined, no extraprostatic
extension identified.
Lymph -vascular invasion: not identified
Perineural
invasion: present
Margins: all surgical margins are negative for carcinoma
Bilateral
seminal vesicles; negative for carcinoma
All seven lymph nodes negative for
carcinoma
AJCC pathologic stage: pt2 n0 mx
Betsy looked
this up:
T2c: the tumor is in both lobes(see tumor location)
N0: there
has been no spread to the regional lymph nodes
MX: cannot evaluate distant
metastasis(seems a little iffy; would like a M0 - no distant metastasis)
We
also did not like the perineural invasion...the nerves in the prostrate...pathway
out? But we will take the reassurances of our doctor and return for PSA blood
test in a month and start the watch from then.
Recovery continues:
Betsy:
Paul is now 18 days post-op. If you remember I mentioned he had quite a bit of
gas, bowel and stomach pain after surgery (for about 7 days). Well, I just got
over a bout of stomach "flu" this weekend and I think that he might of had that
same tummy" bug" along with the usual healing up aches and pains and then passed
it on to me. We are both feeling good now. Paul also isn't as dry as he is hoping
he would to be but its still early. He claims to be Kegelling faithfully. He always
wears a guard/pad. Probably changes about 3 to 4 each day. Each night is different,
sometimes wetter, sometimes dry. I have mentioned watching what he drinks in the
evening. I had an interesting day yesterday with both Paul and "almost potty trained"2
3/4 yr old grandson...a busy bathroom!!
Paul is back to his pastoring duties;
preaching, calling and visiting. His other job at the auto parts store will be
another week or more before he returns due to the need to lift heavier items.
I've
noticed that once these guys start feeling better they start to notice things
to do around the house, like the wobbly fence and gate post to our picket front
fence. Paul complained that his belly felt sore and swollen about 3 days ago.
He never mentioned any new activities. I notice as I was leaving the house for
work the next morning, the tools on the front porch. Immediately, I knew he had
been up to some home repair that he shouldn't have been doing. He has now backed
off the home repairs during recovery!
Three and half weeks after surgery:
Betsy:
Paul is going back to work to his auto supply company job tomorrow. Since it involved
lifting, he has not rushed back. He is still experiencing some dribbles when getting
up and down, lifting or changing positions. He does get awfully discouraged about
it. I don't think it is really as severe situation as he thinks, just a 2-3 pads
in 24 hrs. He just didn't think it would still be happening 3 1/2 weeks out of
surgery. I had him get on the internet again and do some more reading of other
men's experiences. His response was,"Well, I just have to keep up with the exercises.
It will take some time to get better." While dealing with the dribbling issue,
we have been working up to dealing with the non-nerve sparing results of surgery.
Paul hasn't even wanted to venture around that part of the situation and his reduced
anatomy. We are going to have to relearn some ways of "loving" each other.
September
1010- 4 Months after surgery:
Paul: Almost back to normal. My new
normal. Leaking has abated to close to a acceptable minimal level. Except when
lifting large items. Still have to get up at night. Hope this gets better. Glad
I went through with the surgery. Perhaps if I had done something sooner in 2007,
I would have had explored different options of treatment. But I felt that for
me surgery was the best choice in my circumstances. God bless you all in your
decision-making and be with you in your course of action.
June 2010 First
post-op PSA 0.03
Sept 2010 Second post-op PSA 0.01
Next in January
2011. Report then!
Paul's
e-mail address is: btweedy57@yahoo.com
