Bubba's journey

User

Posted 27 Mar 2016 at 12:29

I am 59 years old, happily married with three children, two grandchildren with another grandchild due in June. After quite a bad year in 2015 with various skin cancer operations. Two of which were malignant, caught just in time, thank god. I was looking forward to a better new year in 2016. This is my story and PC journey.

Over the past few years I kept getting a water infection. Having each time produced a water specimen I was issued with antibiotics. My PSA was never checked, and to be honest I never. Knew of this test. During the last quarter of 2015 water infections became more frequent. It became so uncomfortable in what I can only say I was drained from urine and blood followed.

I decided to change surgeries and immediately my new GP asked me general questions. I was told repeatable water infection was quite rare for men.

I was fast tracked to see a urology consultant. After many tests, the consultant tried to perform a endoscopy, and there was a blockage. At this time i informed the consultant my elder brother of two years had prostate and bladder cancer the previous year. This immediately raised alarm bells, with an MRI, more blood tests etc arranged very quickly.

After surgery on my utetha I went home with a catheter which was removed the following week. I was informed I had strictures (scar tissue) inside of my uretha, and for the test of my life, once per week o have to self catheterise, to maintain a clear uretha for passing of waster.

I had 19 biopsies on my prostate of which one had 12% of cancer. On February 4th 2016 I was informed I had prostate cancer. Wow I didn't expect to be told that, as my appointment was a bladder urology follow up. My PSA level was 1.2, I had a Gleason score of 7 (3+4) and T2 stage. This was mumbo jumbo to me. I met the urology surgeon and a week later the oncologist consultant.

In between this timeframe I read and read all I could about PC. I received great advice from my brother who is still in remission I guess with a PSA level of 0.0000!.

I am a very positive individual and believe with a strong mind, great family support and a journey which I have debated and finally chosen to get rid of this enemy inside of me.

On February 11th 2016 after meeting the oncologist consultant, together with my wife in attendance, I started my radiotherapy journey. One month of tablets 3/day., after two weeks I had my first of four hormone injections. One injection every 28 days, which will lead me up to may 19th.

I am scheduled to have 3 gold plated makers inserted onto my prostate Aoril 8th. All being well radiotherapy will start around 23rd May. This will be Monday to Friday for seven and a half weeks. Every day before radiotherapy o must have an enema and drink a lot of fluid.

So for now this is my story, I'll be in touch,

Edited by member 28 Mar 2016 at 21:11 | Reason: Not specified

User

Posted 28 Mar 2016 at 07:43

Hello Bubba and welcome from me too.

I was often asked how I felt once I was diagnosed and I used to say that I felt "very lucky that it had been detected ". Most people would look at me in amazement with this reply but that's actually how I felt. I came in with T3a and Psa 33.5 Gleason 5+4+3 .

My treatment plan was quite standard HT followed by 37 fractions RT. My Psa is now 0.2 having fallen from 0.5 post RT .

I initially had 28 day cycle of Zoladex which was then made 3 monthly. I've endured the usual side effects of loss of libido tiredness muscle loss and hot flushes. I also have occasional bouts of teariness too. I should complete 3 years of HT in August 2017.

I remained as positive as I could throughout the treatment and had nothing other than the most fantastic support from everyone ( family friends colleagues and my medical team). There were a few dark days though but I got through them - I didn't know about this site then - and now feel as optimistic as I can that the treatment I went through will have provided curative therapy.

Good luck in your travels.

John

User

Posted 27 Mar 2016 at 14:22

Hi Bubba, welcome to the site that no one wants to have to be on but now that you are here you will find that there are a whole host of guys and gals that can help you with information and advice. We all know what you are going through from diagnosis to treatment.

Your treatment plan is similar to mine, ie HT and RT. I am 66 and was diagnosed Feb 2015 with PSA 63 and Gleason 3+4=7 T2 aggressive PCa confined to capsule, I am on Zoladex for two years, with a short break for emergency op to remove burst gall bladder, then started RT Aug. My PSA is now 0.01 and undetectable and have been OK with all my treatment but side effects take their toll. HT brings tiredness,loss of libido, muscle loss, boob growth and extreme tearfulness for happy and sad things that I,previously took in my stride.

RT brings a bit more tiredness, extra weeing, urgency for pooing and wet farts, these all wear off after ending RT

Staying positive helps and taking spare underwear and a container to wee in when desperate will do you well.

Best of luck with your treatment

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 27 Mar 2016 at 14:30

Welcome to the site Bubba.

Hard to believe that you have been "lucky" isn't it ?
What would it have been like had you stayed with the same surgery. Doesn't bear thinking about.

Good luck with the treatment and please stay in touch

We can't control the winds - but we can adjust our sails

User

Posted 27 Mar 2016 at 17:14

Hi Bubba,

You have had a lot thrown at you and were unfortunate that your original GP was not more proactive. But at least you are on track now. The HT and 7.5 weeks of RT is quite usual but there are sometimes differences between treating hospitals. The Gold seeds serve as good markers, though not all all hospitals use them. Similarly, not all hospitals require enemas or specific amounts of water to be drunk before each fraction (session) of RT is given. Also, patients are often required to have HT for anything between one and three years post RT so that will be something for you to ask about if you have not been told already.

Side effects can vary in scale and intensity from one patient to another but the most frequently experienced ones have been mentioned.

If you have been correctly staged, your cancer is contained within your prostate, so hopefully will be successfully dealt with there.

Edited by member 27 Mar 2016 at 17:54 | Reason: Not specified

Barry

User

Posted 28 Mar 2016 at 21:05

Thanks Chris/Woody for your welcome and great advice. Looking forward in a strange way in keeping my dialogue going,,

Best regards, Bubba

User

Posted 19 Apr 2016 at 18:17

Bubba,

It won't be long until the RT starts and I wish you well with it. This in between time was for me the worst part. I just wanted to get it started !

One tip if you garden do as much as you can before and in the early days of treatment before any fatigue builds up. My treatment was over winter 14/15 and I worked really hard in the autumn before cutting back as much as possible. It paid dividends as I was still fatigued / lethargic the following spring and was grateful I did not have as much to do as I would usually have to.

Good luck .

John

User

Posted 19 Apr 2016 at 22:06

Bubba, glad you are reading up and doing all the right things in preparation for RT.

Depending on how far you will be travelling to and from the hospital for your treatment, be aware that going for a wee on the way home becomes more urgent with sometimes the need to go every ten/fifteen minutes and also your bowels will become a little bit looser after a couple of weeks and you will suffer from wet f***s. I found that first thing in the morning before leaving home I had to go at least twice for a poo and the need was urgent then I could travel after going.

Possibly take a container with you to wee in if there are no stopping places, you can get a "URIBAG" on prescription from your GP to help.

Take a spare pair of underwear also.

Hope it all goes well.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 19 Apr 2016 at 22:52

On the other hand, John had none of these problems. There was no bladder training beforehand and no enemas. He had his RT on the way to work each morning, drank a bottle of water in the car on the way, saw no change to urinary function at all and only had loose bowels for a couple of weeks at the very end of the treatment. He worked every day but needed a nap some afternoons, went to the gym every evening on his way home and continued playing rugby.

I hope you breeze through just as smoothly, Bubba :-)

Edited by member 19 Apr 2016 at 22:55 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 19 Apr 2016 at 23:02

Thanks John for the good advice. Believe it or not I'm just doing as much as I can now before RT does make me weak. My brother advised the same as he had been on his own PC journey.

I'm also struggling at the same time with my lower back. Last Saturday I went into the Royal London Hospital for a procedure which has slightly hindered my movement.

But I'm a person who never gives up or gives in to things. So I'll be up and running back to normal soon.

I wish you well John and sincerely hope everything is now good for you.

Regards

Bubba

Edited by member 26 Apr 2016 at 15:20 | Reason: Not specified

Show Most Thanked Posts

User

Posted 27 Mar 2016 at 14:22

RT brings a bit more tiredness, extra weeing, urgency for pooing and wet farts, these all wear off after ending RT

Staying positive helps and taking spare underwear and a container to wee in when desperate will do you well.

Best of luck with your treatment

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 27 Mar 2016 at 14:30

Welcome to the site Bubba.

Hard to believe that you have been "lucky" isn't it ?
What would it have been like had you stayed with the same surgery. Doesn't bear thinking about.

Good luck with the treatment and please stay in touch

We can't control the winds - but we can adjust our sails

User

Posted 27 Mar 2016 at 17:14

Hi Bubba,

Side effects can vary in scale and intensity from one patient to another but the most frequently experienced ones have been mentioned.

If you have been correctly staged, your cancer is contained within your prostate, so hopefully will be successfully dealt with there.

Edited by member 27 Mar 2016 at 17:54 | Reason: Not specified

Barry

User

Posted 28 Mar 2016 at 07:43

Hello Bubba and welcome from me too.

My treatment plan was quite standard HT followed by 37 fractions RT. My Psa is now 0.2 having fallen from 0.5 post RT .

Good luck in your travels.

John

User

Posted 28 Mar 2016 at 21:05

Thanks Chris/Woody for your welcome and great advice. Looking forward in a strange way in keeping my dialogue going,,

Best regards, Bubba

User

Posted 28 Mar 2016 at 21:07

Hello everyone who made contact with me. Just to say thank you for your welcome and great advice. Looking forward in a strange way in keeping my dialogue going,,

Best regards, Bubba

User

Posted 19 Apr 2016 at 14:51

Part 2 of my journey:

Since I last blogged I've had my second hormone injection in March. My third hormone injection is scheduled this Thursday April 21st.

In between injections,

I had the "Gold seed Insertiion procedure (fiducial markers for RT planning).

Also had a pre information meeting with the Oncology clinical nurse at hospital. This was a very informative session. It was stressed that as from starting the next morning after emptying my bladder, I am to drink 50mls of water. And not to pass any water in the toilet for at minimum 45 minutes . This I was informed was to help educate my bladder in preparation for radiotherapy. Then at least by evening time I should have taken 2 litres of water, that is not including any tea etc.

This I said to the nurse this wasn't ever going to be a problem for me. As I drink a lot of water and soft diluted fluids daily. Whereas in some cases for other PC patients, drinking and retaining water is a problem. Drinking 2 litres of water a day is a requirement until the end of my course of treatment.

I was given a prescription for a month supply of micro-enema (Relaxit) sachets. On May 3rd I am scheduled to have my radiotherapy planning CT scan. To establish measurements setup criteria to ensure my body is aligned each day to the same setup during therapy. 3 days before the RT planning CT scan I am to start using the enema sachets, to start my body preparing for what lies ahead each day. So the theory is on each day my bowel is empty and my bladder has emptied then replenished with 50mls of water. "Full bladder and empty tectum."

The journey started at a good pace but now I feel it cranking up, the momentum is gathering.

For now that's where I am on my journey.

Regards to all fellow PC colleagues together with their wives, partners and family.

Bubba 🙏😊

Edited by member 21 Apr 2016 at 22:53 | Reason: Not specified

User

Posted 19 Apr 2016 at 14:57

Sounds like your hospital follows the same pattern as the one where I had my radiotherapy - North Middx

Hope it goes well

Arthur

User

Posted 19 Apr 2016 at 15:08

Than you Arthur,

I guess most hospitals follow a general format. Sounds like your in good hands at Nth Midx.

I've had several procedures completed at King George's, Goodmayes, Essex. My main RT will be at Queens oncology dept, Romford.

Good luck to you

Bubba

User

Posted 19 Apr 2016 at 18:17

Bubba,

It won't be long until the RT starts and I wish you well with it. This in between time was for me the worst part. I just wanted to get it started !

Good luck .

John

User

Posted 19 Apr 2016 at 22:06

Bubba, glad you are reading up and doing all the right things in preparation for RT.

Possibly take a container with you to wee in if there are no stopping places, you can get a "URIBAG" on prescription from your GP to help.

Take a spare pair of underwear also.

Hope it all goes well.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 19 Apr 2016 at 22:52

I hope you breeze through just as smoothly, Bubba :-)

Edited by member 19 Apr 2016 at 22:55 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 19 Apr 2016 at 23:02

Thanks John for the good advice. Believe it or not I'm just doing as much as I can now before RT does make me weak. My brother advised the same as he had been on his own PC journey.

I'm also struggling at the same time with my lower back. Last Saturday I went into the Royal London Hospital for a procedure which has slightly hindered my movement.

But I'm a person who never gives up or gives in to things. So I'll be up and running back to normal soon.

I wish you well John and sincerely hope everything is now good for you.

Regards

Bubba

Edited by member 26 Apr 2016 at 15:20 | Reason: Not specified

User

Posted 18 May 2016 at 17:29

Part 3 of my journey.

Hi all to those I've had chatter with, just to give you all an update.

Two weeks ago I went through the measuring up to machine process including 3 tattoo dots. Three days before I started an enema each day and empty my bladder then refill with 500mls of water.

Today I started 1/37 my first day of radiotherapy. before I left for the hospital (only 15 minute drive luckily) I went through the enema process which I stated from Sunday to today.

Well all seemed well I had 2 X-Ray's followed by the RT. My PSA from a blood text after my 3rd injection was 0.1 which was brilliant.

So for now, day one done tomorrow and Friday then 2-days off until start again on Monday.

Good luck to all who are still either starting, or ending your therapy's.

God bless

Bubba

User

Posted 18 May 2016 at 17:51

Bubba,

Been there and done all of that ! Have the t- shirt too. Sounds like you're remaining positive which is great . I found the RT sessions less tedious by asking for the lights to dimmed so I could see the progress of the beam reflected in the Perspex screen above the table. It helped me know how far through the session I was. That became more critical to me towards the end to escape to empty my bladder.......!

John

User

Posted 18 May 2016 at 19:18

Bubba the sessions fly by and no sooner have they started then all of a sudden you will be half way through then next thing you know there will be three days left then all done, job jobbed deal done goodbye RT crew.

I too was watching the machinery as it went round me and was getting desperate sometimes and as the machine ended the crew came in to get me off the slab and I had to make a run for the nearest loo!!

Glad it is all over for me and hope you get through yours with minimal s/e's

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 08 Jul 2016 at 23:24

Part 4 of my journey.

Hello all, today I completed my Radiotherapy treatment. Starting on 18th May I started my 7 & 1/2 weeks (37 sessions) of therapy. Monday to Friday every week, with each session starting with an enema then followed by a few hours later with RT. I won't miss this at all.

I have always been very positive from the very first day through to today and will continue being positive into the future.

I have had brilliant support from family and friends throughout my journey. Especially by my lovely wife for being my support and rock. Not just since my diagnosis but for always being my soulmate and best friend. She has been by my side every day during my hospital treatment. I cannot say what that has meant to me.

My next consultant review is 25th August, and for the next several weeks I must continue with using E45 cream on the RT areas. Plus keep up drinking lots of fluids especially water.

So everyone my RT treatment is over and I'll start to get on with my life with some normality. Here's to a brighter future in health and wealth for us all. I'll be in touch again.

Regards to all PC friends,

Bubba

User

Posted 09 Jul 2016 at 07:03

Hi Bubba
Great news and great spirit , and I hope the results come back good.

User

Posted 09 Jul 2016 at 08:31

Interesting that you had to use an enema for every session, obviously something your centre does but I don't think most do. I certainly had days when my bowels weren't properly empty and had to get off the table to sort them out - I eventually decided to sit on the loo just before I got changed into my gown to get rid of any gas and that seemed to do the trick. The only time I had an enema was for my transperineal biopsy.
You will certainly be relieved it is all over (I only had 20 sessions myself but it still seemed an eternity) and hope the side effects don't linger too long.

User

Posted 09 Jul 2016 at 08:59

Hi Bubba, good that RT is now done and dusted without too many problems, I always feel sorry for those that had to have the enema every day before being zapped. In the Worcester Health Trust they do not have it as part of standard daily procedure but will give one if needed. So glad I did not have to have one daily.

You will probably have a PSA test just before you see the onco, on Dx my PSA was 63 and after RT dropped to 0.01 and officially undetectable so let's hope you have the same.

Best wishes for August appt and fingers crossed the worst is over, have you finished HT now?

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 09 Jul 2016 at 09:32

Thank you Chris J 👍

User

Posted 09 Jul 2016 at 15:46

Bubba,

Great news you're free from the daily rigours of the RT routine now but it can take a little time to adjust to life without it ! Hopefully any residual RT fatigue will cease for you soonest. Mine went after about 6 weeks.

My RT centre prescribed enemas for daily use one hour before RT sessions. At my first RT appointment for the insertion of the gold fiducial markings I was given a package containing 42 enemas . I still have some of them! It's interesting how different each of our treatment plans are for something very similar.

I hope that your first Psa test results are as good as Chris PB's were.

Keep in touch ,

John

User

Posted 09 Jul 2016 at 16:29

Thanks John for your valued comments

Bubba

User

Posted 09 Jul 2016 at 16:31

Ps! I will of course keep in touch with my PC friends.

Notification

Join the online community now.