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This member is a YANA Mentor This is his Country or State Flag

Barry Lewis and Dorrie live in England. He was 62 when he was diagnosed in February, 2011. His initial PSA was 4.80 ng/ml, his Gleason Score was 8, and he was staged T3a. His choice of treatment was External Beam Radiation+ADT. Here is his story.

More about me:
Construction Manager
Married; Three Children and a english bull terrier [Pebbles] and a cross called Ruby
love to retire!

Hobbies:
Motorcycling [gpz1100 95/98 TRASHED GPZ NOW GOT NEW {TO ME} BLACK GPZ 27000 mls
Touring Europe
Watching moto GP

Latest News:
My problems started about four years ago I first had pain on ejaculation ,passed it off as something not sure as it was mixed with pleasure and not quite sure what to make of it,pain right down at the area inside and below base of penis, then I started suffering less ejaculation until finally it turned to retrograde ejaculation,Then summer 2009 I went to my doctors about the need to get up 3/4 times to go to the loo not sure if he gave me a D R E but we had a blood test taken which came back at 2.9 and doc said quite normal for a man of my age ,and getting up to go to the loo a couple of times a night was just a problem with getting old, Fast forward a year ,i was involved in a construction job in Broomfield hospital and a young lady[head of dept] with whom I had to deal with on a daily basis advised me to go back to my doctor and ask for a referral to a urologist,i went to see my doctor and it took three big asks before he agreed ,missed first appointment June 2010 then seen uro on 8th Aug 2010 ,give me a D R E which was very painful he said that my prostate was hard and that it could me quite sinister! we then went on a course of antibiotics and also gave me tamulsion to help with urine flow and arranged for another blood test/ PSA four weeks later which came back at 4.1 borderline they said then followed a flow test, followed by a camera into my bladder uncomfortable they said {WOW] they need to try it, ultrasound on my kidneys followed in DEC 2010 with an appointment in March 2011 to see my uro which was then put back until April,upon which I protested and was assured that someone would have looked at my notes and decided that I was not urgent, I thanked the young lady and was feeling better when 20 minutes later my phone rang ,can you come in tomorrow please 1st Feb 2011 ,things then started to move very fast. Attended hospital 0n the 8th Feb 2011 my uro said I think we need to do a biopsy, when I said, tomorrow he replied.

9th Feb
Biopsy 8 cores too painful to take any more,

11th Feb
Test results Gleason score 3+3. also told all eight cores showed 95% positive
PSA 3.1

11th Feb
Told nurse that I was just starting to have some pains to my inner thigh when I rotated my hip was like a stabbing pain.
MRI booked for 4 weeks time
No MIR must be because I have stent [must ask]
CAT scan booked for 15th March.

21st Feb
Pain in right hip still there hope its muscle strain
15th March had cat scan will go back in a week for report and start my journey

22nd March
CN phoned me and told me CT scan did not show prostate clearly, and that I would need an MRI, so she will need to contact Barts to try and find out what kind of stent is in my heart[didn't know I had one]
She also said no spread to soft tissue or nodes and based on my low PSA 3.1 they don't suspect any spread to bone
But she is setting up a meeting with medics.

April
Met up with Onco nothing done about stent, crap service agreed to stage me T2/T3 and arrange bone scan and start me on casadex and Zoladex,had first injection no problems

May 4th had bone scan will see results in about two weeks,
Fast Forward
Bone scan clear,still feeling sick with flowmax and off food losing weight,
Appointment with urologist had urinre flow test flow bad,new appointment 25th june 2011 if poor will have rebore TURP,

16th 06 11
Appointment with unco, PSA now .7 Good news!!!! Told her flowmax was making me sick ect she said stop taking them did't give me anything else, she said after I have a rebore to prostate she won't give me RT until 3 Months have passed and after RT she wants to take me off HT sounds positive wants to see me in 3 Months and she will contact Barts And find out stent then give mre an MRI before RT then she can target the RT,

22nd 06 11
Had my third zoladex injection wow that one hurt different nurse.

Weight loss seems to have stopped but still feel sick nausea most days, back on flowmax as it works urine flow is improved with it, so will tell URO and maybe he will come up with something else.

25th June 2011
New flow test less than 100mls in ten secs,
Booked in for TURP on 8th August

20th July 4th
Zoladex same nurse painful, need to miss next appointment and get back to my favourite nurse.

4th August
Going to hospital for blood test 2 weeks early as I am having TURP on 8th August, 4 1/2 months into ZOLADEX and just starting to feel fatigue get tired about 2PM every day.

Next Zoladex 18th august
Had TURP, worst experince of my life see my journey will go back in after about a week and have catheter out and send in a letter to Hospital.

18th August 2011
Went to hospital nurse who removed catheter was soooooooooooo good she restored my faith in the hospital
In the afternoon had 5th ZOLADEX injection.

19th August 2011
Felt OK slight pain on urinatiom

20th August 2011
Knocked for six bad attack of shingles very severe very painful Doc put me on anti viral drugs spending all day in bed lots of pain.

21st August 2011
Back down to docs with urine sample could be an infection
Spoke to him about weight loss, he asked about cancer in family ,I told him there is lots of bowel cancer in My mums side all brothers and sisters 10 of them died from bowel cancer,he told me flowmax would not cause nausea and weightloss made appointment for blood tests and consultant.
Hospital consultant wanted to do an endoscopy to have a look inside stomach as I have all the symptoms of a ulcer appointment for 5/9/2011 [fast foward]

5th Sept 2011
Just coming out of a dark place ENDOSCOPY showed two small ulcers which can be treated NO CANCER, Shingles getting better a tiny bit at a time only fighting CANCER on one front only, PROSTATE

8th Sept 2011
Had session with ONCO she is putting me forward for RT 37 SESSIONS 74 GYS early November, NO PROMISES BUT IT WILL BE CURITIVE TREATMENT. so good news
PSA still undetectable ,But been told histolagy on turp showed gleason 4+4 not good and looks like its moved to semenal vessles
Now on three monthly ZOLADEX.

15th Oct 2011
still feeling the effects of shingles taking 6/8 co-codamal but getting pins and needles in arms and fingers must speak to Doctor, have reduced pain killers four a day.

November
RADIO THERAPY, Started RT Early November no problems until 32 started to get urgency with urine could be an infection
Due to finish December 30th.
Finished RT as planned, urgency only towards the end of RT,next appointment with UNCO will be early April for first PSA test post RT.

Favorite Quote: Motorcycling introduces you to friends that you didn't know you had.

UPDATED

July 2012

Seen Onco on the 7th June was told I am still in remission 2nd since RT finished ,undetectable PSA,but she would like me to see a team for a rectal examination as bowel cancer runs in my mums family.

Treatment was 72 GYs EBRT and ZOLADEX monthly

Booked in for 20th July 2012

UPDATED

March 2013

? is it RT or Zoaldex or both.
June 20th Zoladex injection Monthly
July 22nd Zoladex injection Monthly

2nd August
Had colonoscopy today nothing found
Carried out because of mutant gene on my mums side all 9 siblings died from bowel cancer
20Th August Zoladex L/H side

15th Sept
update from Hospital on Colonoscopy
Offical letter nothing found in biopsies taken,
But I need tested every three years because of mutant gene in my Mums side of the family

17th Sept 2012
Seen new Unco
PSA still undetectable
now on six monthlys.

17th Sept
Zoladex RHS.

30th Sept 2011
Suffered urine retention went to A&E had catheter fitted Doc was very good talked me through it the whole way taught me how to relax, liquid gel to numb the penis was still stinging though.
all in all that is the way to insert a catheter.

Not sure of all the right Dates

Doctors have changed me from Zoladex to Prostap3 15th Oct

Between 30th sept and 23rd Oct I have suffered three more bouts of urine retention been cathered twice more once cleared itself.

23rd Oct
Attended hospital today to have a new test
Attended Hospital on the 23rd Oct to have a urodynamic test ,and although I had read up on this test nothing could have prepared me for it.

Appointment time was 1.15 pm 1.30 Uro/nurse came charging down the corridor ,sorry im late been at a meeting, come in she said,
do I have too I joked.
Got undressed down to pants and socks and put on gown walked through to couch, nurse said Barry you need to remove your u/pants, Only kept them on because I leak round catheter so I am wearing a pad and I didn't want to dribble across the floor.
Started to take off my underpants and somehow the lever on the bag got caught and it must have opened and half a bag of urine flooded out.

Because I am on Zoladex I just broke down in floods of tears

When the floor was cleaned up I got on the couch feeling really sorry for myself, Nurse removed catheter quite quickly and as usual it was a stinging pain. Nurse told me I am going to put a tube back up your penis, inserted Gel I asked her to leave it for a couple of minutes to allow antiseptic gel to take effect, might as well talked to myself as the next moment I had been rodded. F++++++ pain seared all through my penile area, roll over onto your side I need to put another tube up your rectum, that was carried out no pain. Right Barry can you get off couch and walk over to this machine and I will connect you up. As I looked down at my hormone shrunken penis dripping with blood I thought to myself is this the way it always going to be, is this my journey. Completed the procedure then got back on couch to have tubes removed more F+++++G pain, tubes out now I need to fit new catheter, can you just give me a few moments nurse I pleaded through watery eyes, sorry Barry I have got another patient waiting, in went the antiseptic gel can we just wait a couple of minutes nurse (see guidance for numbing penis for inserting catheter). Nurse just said it's better if the catheter is fitted straight after gel. Argheeeeeeee More F+++++G pain only more intense.

Got dressed, never felt so traumatised in all my life. Made new appointment to see URO in fortnights time and somehow made my way home.

This is a **** Cancer and some of the treatment is barbaric.

Nov 2012.
Just back from latest appointment attended TWOC clinic, Training without catheter, passed OK three urinations very little residual,

They explained all about self catheterization ,watched video all about it URO nurse wanted me to do it as she watched, as we were talking all about it, a medical emergency developed and it was all hands to the pumps for them, I suggested to nurse that she join in and help as they were calling for her. I asked for two catheters size 12 and I would do it at home , so here I am at home with two catheters but problem is I am still very sore from having a indwelling catheter for about six weeks, but I need to try in case I go into urine retention, one for practice and keep one for real.

Dec 2012
Well four days after removal of catheter and bag, I have gone into retention each following morning, but on each occasion I have managed to self void with a size 12 speedicath after having been taught at the hospital. I would never say that this is the most pleasant experience but I am getting used to it and it is a lot better than a catheter and bag. For those who are setting out on this stage.

I scrubb up in the shower and standing up with penis held up towards belly button I slowly insert pre/lubed cath into penis as I reach the bladder and it won't go in I straighten out my penis and I cough very hard a couple of times and gentle push the catheter until urine flows , when the bladder is empty I slowly withdraw the catheter and I am done for another day,

Much better and far less pain than the Hospital. I am in control.

Dec 13
Latest news for the last 4 days no need to catheter as I have not gone into retention.

Dec 20th
Caught another urine infection, nurse said quite a nasty one ,need to drink more water during the day.

March 7th 2013
Six Monthly PSA test
Still undetectable 0.04 next test Sept 7th stay on HT until xmas 2013.

March 18th 2013
Back into Hospital for a camera job, they found a stone in the bladder and a narrowing in the prostate uretha caused by RT, surgeon dilated uretha and I was kept in overnight and left with a size 16 catheter to be removed in a fortnight, but I don't think this is the end of my urine retention.

UPDATED

April 2014

7th April 2013 - What a waste of time that was. Attended the hospital for a TWOC all ok. That was Friday flow was good but a bit painful. Went to bed about 10.00 PM at around 2.00 AM got up for a pee, shocked urine retention again, stuck a catheter in and went to bed holding what's left of my wille as it was painful. went to sleep and got up around 6.00 am and went to the bathroom, more urine retention stuck in another catheter solved the problem. During Sat I had to self catheter four more times same during the night and so far three times today. Where do I go from here,as I now seem to be totally Incontinent as well. Really fed up getting upset at really small things.

21st April 2013 - Just got through a box of catheters will order another two boxes tomorrow and ask for a sample box of size 14 incontinent well that has stopped its all through a catheter, my two passions two cups of coffee and wine in the evening will now have to be cut back don't want to irratate the bladder. Well tried size fourteen and found it too painful so will stay with the size twelve, feeling depressed.

30th April - Phoned Clare Turner CN Nurse told her all about the trouble I have been having, don't think they really listen but she says she will get me an appointment with consultant. we will see.!! Took the beast out for a spin today think I might have broken the speed limit!!

3rd June - Appointment with URO today to see if way forward RE Intermittent self-catheterisation and incontinence/retention. Attended today no Mr M just a member of his team, Mr M was probably doing his private work. He asked me was everything OK , I looked at him with a shocked look on my face and said no everything is not OK I am passing 5/7 catheters in a 24 hour period because I have gone back into retention, which happened soon after I passed a TWOC clinic. URO said that they removed a stone in my bladder and dilated my prostate uretha and I was structurally sound , so it could be my bladder had no ommph to push urine out, I told him that I had a urodynamic test carried out some months ago, have you he said It then dawned on me that he had not even read my notes!. I forgot to add he also told me that I was structurally sound, not sure what that meant [http://www.thefreedictionary.com/structurally] I was then told that there nothing else that could be done for me.

23rd July 2013 - I had a full blood test last Friday as I was feeling fatigued, Doc put down for a PSA test while they were at it. Phoned up today 0.04 [do me] next Six monthly scheduled PSA test is in September

9th August 2013 - Today went to doctors to ask for a referrel to th RM. Based on the following. As you know we all live to some extent with hope and denial. Today I got some really interesting news. Approx eighteen months ago my Unco left under a cloud, stress call it what you want she was always away with the Fairies. [Old Irish saying] After my DX I had a Turp and Histoligy showed my gleason score went up to 4+4 from 3+3, I had been on ADT approx 4 1/2 months by this time. Fast forward to today, Last week I went to the PCUK meet an I asked the Clinicl Nurse a Question about biopsies during ADT, she did not know the answer but promised to look into it, I then sent her some trial results sort of. Here is her reply !

Hi Barry - Since we spoke on the phone I have asked one of our research analysts, Ali Cooper, to look into the effect of hormone therapy on Gleason grading in more detail. She in turn has asked a couple of pathologist that have helped us with some of our publications in the past. Thank you for bringing it to our attention. This is really interesting and has been very informative for all the specialist nurses at the charity. Ali has had a look at the published evidence. The publication highlighted in your email (1) does contain the statement "Gleason grading after androgen deprivation therapy is potentially misleading and is not recommended". One of the publications cited as a source of this information is a randomised study of the effect of androgen blockade on prostate cancer tissue. The study showed the changes which can occur to prostate cancer tissue following hormone therapy can result in a higher Gleason grade. It is thought this stems from the fact that the remaining tumour is usually composed of numerous isolated single cells. The residual tumour cells, however, present few histologic features of high-grade malignancy (2). This same conclusions are also contained in a review of 'Therapy-associated effects in the prostate gland' from 2012 (3). The pathologists Ali emailed also confirmed this. One said after "a few months of hormone therapy the score can be misleading". Another pathologist said "basically hormone therapy shrinks the glands which means that the morphology of the gland changes. The Gleason score is based on morphology - so a pattern 3 goes to a pattern 4. "He went on to say "some pathologists do score after (hormone) therapy - others like me, don't for the reasons above. Sometimes the clinicians don't tell us that a man is on hormones so that is when we grade by mistake!" I know communication with your team has not been ideal but you may want to discuss the reliability of your current Gleason score and risk category with your consultant, although I appreciate it is not long now until you finish your hormone therapy. I hope that has given you a bit more detail. It has certainly been enlightening for us

Sept 4th - Six monthly appointment - Seen CN PSA still undetectable 0.04

26th Sept 2013 - Went to the Royal Marsden for second opinion as I thought that I was being over treated. We all live with hope and denial. Well went to the RM today and hope and denial was well and truly kicked in to touch. DX with 3+3, all biopsy had been positive three years ago. After TURP went to 4+4. Royal Marsden now 4+5.

21st Nov 2013 - Well just got appointment back at the RM Sutton 10th Dec [water works problems]

10th Dec 2013 - Seen consultant only treatment offered was Urethroplasty, Gulp, need to think about that,they will access my records from Broomfield hospital then have a look at where my stricture is then develop a plan.

UPDATED

July 2015

Hi All

Jan 2015 I went for a diliation as I have got scar tissue about halfway up my uretha caused by RT and a rebore, I was meant to pass a size 16 catheter everyday for 12 weeks and if it has stablized they will fit a AUS, I found it rather too painful so I was using a size 12,

Fast forward to July 9th and I am having it done all over again, only in for day surgery.

Not sure if I want an AUS, if I go into retention I have to get my AUS deflated but only by someone who can do it,

Latest PSA was up from 0.04 to 0.09 but I was carrying an infection so I am going in for a retest when infection has cleared.

UPDATED

November 2015

Well it looks like I did not have an infection. Six months later my PSA has gone up to .06 doubling every 1.5 months my appointment with the royal Marsden is on 24th Dec 2015.

UPDATED

January 2017

Jan 26th 2015,
Jan 14th was cancelled so I went in to day surgery today and had a dilation and left with a size 16 catheter in place will be removed next Monday and I will have to self catheter for three months and if it stabilizes they will fit an AUS

Just to bring things up todate AUS with UCLH looks like it a no no,

June 2015 PSA six months after ht finished its 0.09 from 0.004 thats a big increase doubling in each month unco says its because my testo is returning to normal.

Nov 2015 had another Psa this time 0.6 thats inline with doubling every month.

24th Dec 2015
Attended the Royal Marsden today armed with my latest PSA up to 1.14 almost doubled in a month from .6, my Onco says it could be a recurring infection [nice thing to say at Xmas put me at ease dont think so]. We carried out a urine test and booked a pet ct scan in six weeks time if its a urine positive result will cancel Pet- CT scan if not will have scan and work out next treatment path.
Scan laid on for 21st Jan 2016.

4th Feb 2016
Well,
That was a surprise went down to the Royal Marsden today, took the wife with me for support, really thought we would have some news of spread,
In came a consultant and the news was good no sign of spread, the Onco said that because my testo has come back to normal within a year it has pushed my PSA up to 1.2 within a year and if it goes to 2 then 4 then we will do another scan, but he is looking for it to level out around where it is now. He has asked to see me in three months with another PSA test in three months but I am maybe thinking of getting one in a months time.

Xmas 2014 0.04, last Prostap

20th June 2015 0.09,

15th Nov 2015 0.6,

15th Dec 2015 1.14,

15th Jan 2016 1.2 slowed at last.

22nd Feb 2016 0.9 going down testro 16.04

Appointment at the RM back on six monthly

5th May 2016 PSA 1.11 Testro 16.6

Update on the UCLH ,in London my efforts on getting an AUS fitted takes another step this Friday 22nd May 2016. I go in for another stretch as it is closing up again.

27th May 2016
Had a stretch at the UCLH , when I came home I went straight into retention cathetering a couple/three times a day.

10th August 2016 PSA 1.15 up .04

Oct 2016 1.73 PSA up .6

Nov 2016 1.52 PSA down .21

Barry's e-mail address is: barry.lewis AT talktalk.net (replace "AT" with "@")


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