Centrepage

The Home Page for Bladder Cancer

My site may offer some information and thoughts

for those,who might possibly be also suffering.

time period November 1998 to August 2009

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Care and Attention

I have found a few articles on the Net and think they are worth
putting in one place for general information.
When I first had a problem I looked in the information pages
and found a " one-pager" which said----

--If you are over thirty --you do not have Cystitis-

-GO AND SEE YOUR DOCTOR!"

This advice is correct---go and see your doctor and explain
that there is blood in your water.
It may be only small amounts and only happen occasionally
and appear to give a pink tone It should NOT be there!

Next Give up Smoking!
( I am a former 50 year smoker! It is possible!)

I have been reminded that the above also applies to "Piles"
leaking blood from the back-passage may have
other causes, see your Doctor!

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Be aware of the mixed reactions you will get from friends
and relatives, when the problem is confirmed!
HIV, bypasses,stomas are all mentionable but Cancer can
be a no-no!

You will meet the person with same symptoms and prognosis
as you, who denies the fact that they have cancer.
Some people still believe it is contagious and they will now pass
by on the" otherside"
Unfortunately there are still some ,who when told, will go home
and lay down and await the end.

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My episode began on 1st November 1998,when the stream
turned Pink!

First Move---Call up the sites and frighten oneself!

Go and see Doctor----He outlined the usual course of events,
which would take place at the Hospital under the instructions
of a Consultant.

First procedure----blood and urine tests and a Flexible Cystoscopy.
Second Procedure---- I.V.U. and Ultra -sound to check tubes and for
Kidney Stones,which may cause bleeding.
Third procedure---Pre -op visit before admission to Hospital.included
Chest and Rectal examination to check state of Prostate!
Also first ever E.C.G., to prove that the Heart was working.

First Attendance

January 1999

Admission to Hospital for removal of offending item in Bladder and a
resultant infusion of Chemotherapy, in the Bladder, for an Hour.
The problem with "chemo" is that you will find your immunity to
common ailments has been reduced!

Beware of the Casual comment from those who work in Urology!

The junior registrar asked me to sign the "consent form" then
said she would translate the notations for me.

1 You have Cancer.
2 We are going to cut it out.
3 You will have chemotherapy.

If I hadn't already known that I had it-- I would probably have fainted!

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Follow-up routines:-
Renogram in Nuclear Medicine Department.
Again to follow up the state of the tubes and the state of flow.

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July 1999 In again---X-ray of Kidneys.

Flexible Cystoscopy under General Anaesthetic, in case
any thing had to be done. Nothing found!

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November 1999-- Next viewing as an Out-patient,a "red-mark"
found during the Flexible Cystoscopy.Consequently an invitation to
join them for a couple of days in December.
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At the pre-op session another E.C.G.was taken.
General Anaesthetic again in December and a "biopsy sample" taken
using the Larger Flexible Cystoscopy Tube.
Extensive Scan of the Bladder by X-ray Dept(?CT-scan),tilted in many
directions so the views could be recorded,seems a small "diverticulum" is
in situ.

January 2000,a follow-up visit to the Hospital,nothing untoward
was found ,so the next routine visit ,as a out-patient ,will
be in 3 months time.

March 2000,next visit as an Out-patient for flexible cystoscopy.Same items
visible as seen in December.
But they are now keen on "burning" the diverticulum,to prevent it changing
to something worse!
The diverticulum resembles the "blow-out" on a tyre wall and is awkward to inspect.

April 2000,end of month go in for the "burning" described as an "ablation" or
cleansing of the site, the burning done by diathermy.
The interesting thing is that since the bladder wall has no nerves nothing is felt.
Except the results of the insertion of the larger Cystoscopy tube
and the joys of the "catheter"!
Some material taken for biopsy.
home late the following day.

August 2000,next Cystoscopy due as an outpatient.Biopsy presumably satisfactory.
Inspection of work previously done.That looks OK,but two fresh marks have appeared,
could be the start of more toadstools,and they will need to be treated.
Now awaiting an invitation for a stay in hospital for insertion of the larger tube,with its tools.
They intend to do a biopsy on the marks,possibly burn them or "spray" them.
Depends on what they find!

September 2000 Invitation to join them for the investigation.
Book in and sign for a Flexible Cystoscopy,Biopsy and Cystodiathermy.
Once again put out so they could use large tube and tools.No chemicals administered and released from Hospital.
One week later an infection took hold,causing blood loss,apparently not unusual.
20 Cephradine tablets supplied for home consumption over 5 days,which should clear the problem.

October 2000 Invitation to visit Out-patients and get the result of Biopsy.

Current Biopsies found to be O.K.,therefore continue with the 3 monthly check-up.

December 2000 Invitation to my 11th Flexible Cystoscopy--mid-month---

as an Out-patient. Found to be O.K.(the red marks) are infection
so will not be required for another 6 months

June 2001 possible date for next Cystoscopy

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More Joy !

April 2001 Just as one was relaxing ,I have been advised of their new thought that
due to my age I should have a :"Flexible Sigmoidoscopy"
Apparently this is a camera unit inserted via the anus to view the state of
the Lower Bowel and whether there are any problems visible.

3rd April Attended for the "tubing",a couple of "polyps" were found.
Consequently I have been invited for a "Colonoscopy",with a much longer tube,
to see if any more are about,before they commence treatment!
About the length of a drain cleaner!

8th May 2001 Exploration with the "Colonoscopy" apparatus
and removal of at least one "polyp". Tubes not clear enough to complete search
so have now to undergo a Barium Enema so they can examine the
system with a Fluoroscope.

6th June Barium enema and the joys of the fluoroscope together with four days
to get the barium out of the system!

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June 2001 Next Flexible Cystoscopy due!

Attended ,found to have bacteria in specimen,so cannot be examined as it would
be most unfortunate if it got into the bloodstream!
7 days worth of tablets and await the biopsy--indeed a problem.of red cells found in water.
Fresh specimen to Hospital after the event,this was found to be also infected
so another 7 days of tablets.
Still awaitng re-booked appointment--now going over the Six-months for
the flexible in out-patients
and 9 months since last major investigation!

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July 3rd Appointment to find results of Polyp removal etc.

Appointment moved to 7th August by Consultant
Apparently "Benign" so have finished for the moment.Should
the "leaking" re-occur they will give me another Colonoscopy!
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September 19th Finally got to the delayed Flexible Cystoscopy.
Nothing found ,so another 6 months relaxation.

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March 13th 2002 An invitation for a further look,this time a
different inspector,found to have a UTI !
Plenty of debris in the bladder,so booked for a second viewing in 6 weeks
after taking suitable pills to clear the infection.

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24th April Attend for next inspection,still not sure what they can see,so
will be invited in for an inspection with the large tube and a biopsy!
In the meantime will have a "waterflow" meausurement with Ultrasound of
the Bladder to see what retained water exists.
Also an Ultrasound inspection of the Kidneys! Still dump small "particulates"
at odd intervals.(probably from kidneys)

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30th May 2002 Due to enter hospital for latest cystoscopy.

Actually was called in on the 31st,when a bed was finally available.Down to the
Theatre that afternoon for a look through the Large tube, a Biopsy, and a flush out
with Antibiotics to remove a problem that was showing in tests
,but that was not painful!
Out on the Saturday morning once I proved water was flowing properly.

15th July 2002 Post operative meeting with Consultant.
"No Carcinoma found" see you in 6 months for regular check-up!

16th January 2003 Attend Hospital for a review of work
done so far! Expected a three day session.

Told Consultant that on the previous Friday had 7 pink streams in 6 hours
three containing clots!
He Frowned!

Turned into 6 days as further growths ( carcinoma in-situ)
were discovered,cut off and sites cauterised.
Now requires one visit a week to the Chemotherapy Dept
for the next six weeks.
Then another "rigid cystoscopy to check the effects after a
further 6 week healing period.

Supporting information:

Expand to view text!

I Thought it was "ALL RIGHT SO FAR"!

Five Years into the problem.
But they will tell you--that it does not go away!
See January 2003
Now Confirmed! (April 2004)

One visit for Mithmycin poured into the Bladder
and retained for an hour. 20 mins on sides and back
to move it about! Then its removed,for disposal or
cleaning before re-use?
Now been converted to 6 weekly treatments of BCG!
will report on that later!

19th February 2003 meet the Consultant for a discussion.

BCG needed as we have now arrived at "carcinoma in-situ"
which means the bladder lining requires renewing to see if
the problem can be removed!

Being treated with BCG is great fun,first you observe several hours
of no liquids and then they pop in a small catheter to ensure you
are empty.

Then in goes the "live" BCG to do its work,the catheter comes out so
you can be in the 4 positions,lying on 2 sides, and front and back.
Then you are given a glass of orangeade and presented with a litre of bleach
to use in the "loo" after offloading both BCG and orangeade.
Then you can go home.
Minimum effect on day of treatment,following day "woozy head"
and totally knackered!!

June 6th 2003 Back for a 24hr session

Put in the "stirrups" inspected and biopsies taken.Comment from the Consultant
that the inside of the bladder looked like a badly mown lawn!
Biopsies turned out OK,but am now to have an IVU to find out what the water
flow does and what might be in the way.

Late September 2003 Booked in for a Three or 6 day session

depending on what they find!
Went to see them,some biopsies were taken,but no visible problems.
Consequent upon the result of the Biopsy I am having a
maintenance set of 3 B C G's to keep the level up,which was set by
the original 6.

November/December 2003

So am currently enjoying catheter and infusion!
Expect to see them again early next year for another inspection.

2004 Here we go again!

March 22nd 3 day session.Biopsies taken.Probable 3 more BCG's
June or July

April 16th result of Biopsies,no carcinoma found!
Todays specimen found to be clear of infection but
some traces of blood. Suddenly BCG is first week on June!

4th June 1st session system has now moved to an introduction of
               BCG by catheter,no longer laying on stomach for quarter of an hour
                         2 more sessions done to finish this series.

September 13th   for the next "Examination"!
            Some biopsies taken and a small stone found!

November another three BCG treatments to come

That takes us to 6 years since it appeared!

BCG's completed---the commercial sets with slimmer catheters

make it less arduous!

Into the Seventh Year!

2005 Current expectation,per consultant:

"six months from September 13th for next Rigid Cystoscopy"

So back we go in March for next viewing!

Date has arrived in the post!

now for the joy of another "rigid cystoscopy" with no current
indication of any problem!

22nd March upended again for a "Rigid".
Biopsies taken but only scarred tissue found.

Now will enjoy another three infusions of BCG starting end May.
Completed 10th June 2005

Have found that we have another infection which is
lacking in feeling and symptoms, to be cured before BCG

Next visit will be for a Flexible Cystoscopy since that technique
plus updated Histology should enable control to be
established that way!
Rather than by General Anaesthetic and Rigid

10th August Flexible Cystoscopy
plenty of scar tissue,nothing found,see yoiu in 3 months!

2nd November Flexible Cystoscopy
scar tissue,another flexi in three months,possibly followed
up with a "rigid" to obtain a fresh set of biopsies

18th November start next set of 3 bcg's

2006

22nd February 2006      another Flexible Cystoscopy  (No 10)
               some dark patches showing on dome of bladder.
               Will require "biopsies" to ascertain what is occuring
               so awaiting an early appointment for a "rigid"

Possibly the BCG has held it off until this date and different
treatment is now required.

21st March 2006   Day surgery Unit for a "Rigid" (No 13)
            " looks alright"      3 maintenance BCG's in May
              A fresh I V U subsequently    Next Flexi July/August

Currently been running "ivu's" and scans to sort out Kidney Stones!

BCG end November 2006

3 treatments,will be moving to"annual" dose

2007

3rd January 2007 Next Cystoscopy "flexi" (12)
no visible problems.

Take another "KUB" on 31st May to check flow

15th June 2007 next "Cystoscopy" Flexi ( 13) new gadget
took small biopsies.took some time to report findings

13th July no problems found,mild inflammation only
no Cancer cells discovered.urine test also OK!

9th November BCG New annual dose with adhesive compound
Previous nurse specialist has gone from NHS.

2008

23rd January 2008 Flexible Cystoscopy (14) charming lady!
no problem seen.

Treatment has been interesting as the "BCG" technique was developed!

10th April "itchy" for a couple of days

next "flexi 15" on 17th September same charming lady
no problem seen

2nd Annual BCG infusion 13th November 2008

Completes Ten years of having the problem!

2009

15th April 2009 Flexible Cystoscopy (15)
Looks O K ! Check Glucose levels for Diabetes 2

Next Flexi no communication yet!

Update on techniques!

This press extract (Daily Mail) will be of interest"

In addition I am advised that the new generation of "flexis"

incorporate differential light sources--one of which shows

"carcinoma in situ" as distinct from other items on the bladder wall.

Question via Group difference between Rigid and Flexible Cystoscopy

Flexible is a tube like a drain cleaner for viewing content of bladder,about
3 sixteenths of an inch wide,with end optical viewer

Rigid is just that-- rather like a vertical drillmount,over quarter an inch wide fitted
with viewer and tools.Line you up,having hung your legs in the stirrups
and then insert and view on Screen!

Does that cheer you up??

So Keep your appointments! it might be lurking!

FOR THOSE WHO HAVE HAD "CHEMO"

The Immune System collapses and leaves you open
to all sorts of problems!
Don't forget to get your Flu and or Pneumonia jabs!
They can get you even if the Cancer has vanished!

Gloom:

There are side-effects from "Chemo" and the reason for it.
Some of our group in the USA have been given anti-depressants
to cheer them up,but have not been offered them so far!

Oddity:

There seems to be possible changes to prescription glasses
brought on by BCG,but no firm information as yet!
Suppliers deny the side-effect!

Asked the Opthalmic Consultant when I saw him !.
He was non-commital,perhaps to avoid litigation

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Web-sites

http://www.cancerbacup.org.uk

has just been revised and has even more information!

Just been there for info on "Urostomy"!

We started a fresh group in November 2005:

enlist via

bladder_and_prostae_cancer-subscribe@yahoogroups.com

or if already a member of Yahoo Groups call up

"bladder_and_prostate_cancer"

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