Big Decission

Hi John,

My name is Brian I am 46 & was diagnosed with Locally Advanced Prostate Cancer In January this year. I opted for the surgery & went into Hospital on the 25th March. The operation I had Was the Radical Prostectomy, Basically I had My stomach was cut open & my Prostate was removed, But becuase the Cancer had started to spread outside the Prostate I also had my Lymph nodes removed.

It has been a few weeks since my operation & I am still slightly sore, I also still get a little more tired than I used to, But I have lost Over 3 stone, Down to a health 15st 5lb, I also feel much better than I have in a long time. I should also point out that I am also slightly Incontinent & have no Erectile function at all at the moment. The Doctors have said both problems should improve!

I have also been informed that i will be starting Radiotherapy in a couple of weeks. Should be a barrel of laughs, But It only lasts for six weeks it shouldn't be too bad. I can't tell you which is the best way to go John, But I am relatively happy with My decision & I just wanted you to know that there are others here who have been there & are willing to help!

All the best.

Hello John,

Firstly welcome to the group that noone wants to be a member, However you will find a wealth of information and very helpful people, all of which have gone through the same procedure and have suffered,also the same feelings you are feeling now.  Secondly you seem to be a bit under informed about your Prostate Cancer and it would be helpful if you could expand on that a little.

There is no reason why you should have your prostate removed ! If the cancer is confined to the capsule, then you could well be a candidate for "Brachytherapy" this is where you have Isotope seeds implanted into the prostate and it has a 97% success rate.

Hormone therapy is to reduce the prostate and to starve it of Testosterone.

Radiation therapy is used in many ways as a firstline treatment and also as a "Holding Treatment". If I were you I would firstly contact your specialist nurse who will go through the programme of treatment you are going to have, they are most helpful. Thirdly get the "Tool Kit" from Macmillan and have a good read of it, it is a must do item!.  When you have done all this you will have many questions. Make a list out and ask both your Consultant Urologist and the Oncologist what is the best route for you, also what are the side effects of each treatment both short and long term.  if you need any help just post a question on this site and you will be amazed at the responses you will get to aid you in decisions you have to make..

Hope this has helped you a little, One more pearl of wisdom - You must stay positive in the long journey you have in front of you, Prostate cancer can be cured !! next post when you find out the figures post them up i.e PSA count Grade of cancer etc what is the extent of growth. Hope this has helped, all the best, David

I Hope this Helps , i'm 76 now and still going strong.....

ARE YOU PROSTATE CANCER AWARE

How I survived prostate cancer

 

From Mick Glover ..aka (Taxpayingoap)....aka (Asbomick)

I am 76 (77 in July) years old and a prostate cancer survivor. I survived because I had water works problems. I went to see my GP and on snapped the infamous glove.

Fear not, lads, this is more embarrassing than painful. A lot of 'uming' and 'aring' from the doctor followed.

 

After the rubber finger was removed, he referred me to the local hospital

.

At the hospital, I met some very worried looking men, all drinking water by the gallons to pee on demand into a machine which looks like a bucket with whirly bits in it. This measures the power of your pee, or lack of power as the case may be.

The resulting chart had a sudden descent downwards. I then had more embarrassing investigation of my rear end, including a student bum inspector who kept apologising as they took some scrapings for testing.

Again, this was more red faced than pain. I was then allowed to go home.

I received a curt letter which simply said, "You have prostate cancer". There was no doctor to break it gently to me here. The upshot was to attend the hospital daily for 6 weeks of radiotherapy, with weekends off for good behaviour!

So daily I attended the hospital. I had to lay down on a long platform and was trundled slowly into the jaws of a large machine. This is totally painless and you even get to meet a lovely bevy of caring nurses.

One problem with the scrapings that nobody told about was that a scab forms and when the scam becomes detached you get blood in your pee. Unfortunately this happened to me when I was using a public toilet urinal. I don't know who was more astonished as my blood/pee went slowly downhill past my fellow pee'ers. They all looked at me and I looked at the bloke next to me!

Also, and just as importantly, there are also injections of a capsule into the stomach. This is slightly painful. The only drawback is you tend to put on a lot of weight - don't let anyone tell you it's because you eat too much! And the cost of new trousers is a bind. Every 12 weeks I would toddle off to the local clinic so another nice nurse could inject the capsule into my tummy. I also had regular blood tests to check everything was going OK but I always had very good results. This is also carried out by the same nice nurse at the clinic.

 

That all happened Many  years ago and as I look at the smiles of my grandchildren (And now 2 Great grand children)

 

I think "Thank God for the doctor with the rubber glove!"...I hope the above Masterpiece will finally convince the lads to get checked out. I also believe that testing should be offered by you GP as a standard test when you are at the age of most risk from this Bloody awful disease

 

Hi John.

I had the RP 14 months ago and am now fully recovered and have been told that the cancer it totally gone as my PSA readings are unrecordable.

Wishing you all the best.

Dave.

Hi John

I was 69 in April.  My prostate journey started in 2008 and my GP refused to examine my prostate.  Then when he did refer me to Urology he informed them I had no urinary symptoms but was concerned about prostate cancer.  The Urologists proved very helpful and between then and 2010, arranged various tests and imaging to check why I was having problems such as passing blood, discomfort and felt like I had repeated urinary infections.   My PSA levels were high but that was explained as due to another operation I had in 2009.  In 2010 the consultant urologist explained my prostate was still relatively small and benign so there would be no more need for PSA tests and clinics.

In 2012 I requested another PSA test when I discovered that the consultant urologist had written to my GP following the 2010 clinic advising him no more clinics were necessary but another PSA test should be done in April 2011.  That test was not done so in May 2012 I requested a PSA test.   

That 2012, PSA test was again high and I was given an appointment for the usual flow tests and then an examination by a urologist.  So once again I was informed my prostate gland was smooth and benign so nothing more would be done.  But when I questioned this and referred to continuing discomfort and my thoughts on infection/inflamation the urologist said he would arrange another blood test, a testicular scan and another clinic in February 2013.  The scan was negative and the letter of appointment for the next clinic arrived within a few days.

But a week latter another letter arrived informing me the blood test taken after the last clinic had shown yet another rise in my PSA so a transrectal ultrasound and biopsy would be done.   As my prostate was small benign and smooth feeling I was informed the biopsy was not expected to find any problems.

Two weeks latter a McMillan Nurse informed me a small number of low grade malignant cells had been found in the right side of my prostate, Gleason score 6.  As the small number of cells were confined within my prostate the nurse advised that 'Watch Full Waiting' was appropriate and in accordance with NHS policy for cases like mine.

Having had four years to consider my options and investigate I informed the nurse that I wanted my prostate removed surgically within the cancer waiting time limits.  Her reply was I would first have to be assessed for a minimum of 10 years life expectancy and to my surprise have an MRI scan and Nuclear Bone scan to prove the cancer had not spread to other parts of my body.

So it now seemed there was some doubt about the cancer being confined to a very small area in right side of my prostate!  The assessment cleared me for10 years, lucky me and I had the two scans.

I then received appointments to see a Surgeon and then an Oncologist.  The surgeon said he understood I had already made my decision to have my prostate removed surgically.  However he advised that I should see the Oncologist to discuss the alternative options.  The Oncologist advised the two scans had confirmed there was no spread of the cancer outwith my prostate and the MRI images combined with my medical files indicted that the problems I had experienced since 2008, were due to undiagnosed prostatitis.  The more important result from the MRI scan was that the malignant cells were not confined to a small are in the left side of my prostate but were spread throughout my prostate.  The explanation being that the very fine needles used to take the 18 needle samples was like looking for a needle in a haystack!  

My prostate was removed by laprascopic surgery on 11 December 2012.  Before the operation the surgeon was very confident that removing my relatively small and smoothy prostate gland would not be a problem and full nerve sparing would be possible.  However immediately after the surgery I was informed that the nerve bundle and lymph gland on the left side of my prostate had to be removed.  The explanation being that the left side of my prostate had been found to be in very poor mushy condition and to ensure the cancer had not spread the nerve bundle, lymph gland and some tissue had been removed.  The tests proved no malignant cells had passed beyond the margins of the tissue removed.

The poor mushy condition of the left side of my prostate gland was then said to be the probable reason why the needle biopsy had not found any malignant cells in that side of my prostate.

My recovery has been slow but now 5 months later I am feeling better and more active,  The first PSA test in January gave the minimum possible reading, and I am waiting for the results of the second PSA test two weeks ago.  I have asked why another MRI scan is not done with the response there is no clinical reason for another MRI scan.

My recovery has not been as straight forward as all the leaflets and advise suggested but I am happy that I opted for surgery.  My reasons for doing so was my understanding that further surgical corrections were often not possible following the none surgical options.  But had I not opted for surgical removal the problem with the left side of my prostate and the lymph gland and nerve bundle would not have been discovered.  Or at least as far as I am aware the problems with the left side of my prostate, lymph node and nerve bundle were not known prior to the surgery!

Obviously every case is different but I hope this gives you some basis to make a decision.

 

abprops

 

Hi John,
Welcome to the group, although I'm sorry you need us.
I've gone down the route of hormone therapy and radio therapy and have been told that I am now clear of cancer. Most people on being told that they have cancer want it surgically removed, but that is not the only option and success rates for removal compared to HT/RT are similar.
The toolkit mentioned by Dave above is available from the Prostate Cancer Charity. It is free and you can get a copy by phoning the free helpline on 0800 074 8383 during office hours.
It gives lots of information on treatments and their side effects which should help you decide.
Good luck with your treatment, and if you need further help, just ask and we'll do our best.
Let us know what you decide,
Colin

Hi John, I can only comment on my Dads treatment but, He is too 57 years old, PSA of 5.6, Gleason score 7 (3+4). We were told the devastating news on the 25th March 2013. He was advised he could have active surveillance, brachytherapy, radiotherapy, or removal. Initially Dad was set against removal because of the after effects and was more gearing towards Brachytherapy. After a lot of thinking and a volume scan to actually see if Brachytherapy was possible. It was decided he would go for removal. His reasons were, should the Brachytherapy fail, the only treatment he could have after Brachytherapy was hormone treatment and for a maximum of 2 years. He said if he had been older then he might of considered this but not while he was so young. He has now opted for removal and we are just waiting for the appointment but we are expecting it sometime in June. Yes the after effects if he gets them are not pleasant but we will deal with it together. His thinking is, the cancer has been removed its hopefully all gone, removal defiantly has physiological benefits. Claire.

Hi John,

My name is Mark and diagnosed Dec 2011 aged 55.

 PSA 18 (increased to 23)

Gleason 3+4

 Contained within the gland

The reason I’m contacting you is because I was presented with Radio Therapy or removal. However, I wasn’t happy with the side effects and decided to research further. This is when I came across HIFU (High Intensity Focused Ultrasound) you will find more information on either this or the Prostate Cancer UK sites under Alternative Treatments.

I successfully had the HIFU treatment on half of my gland 8^th August 2012 I’m fully recovered and without any side effects and my PSA is 3.8 – within normal limits.

I’m not suggesting this is the route you should go, however, it may be worth a look. There is also more info on my profile LordL.

I will gladly answer any questions you may have.

Mark

LordL said:

my PSA is 3.8 – within normal limits

Within normal limits for someone who has never been treated; but not, alas, indicative of a cure.

What was your TNM score at diagnosis?

Can you bring us up to date on your progress?