PC newbie

User

Posted 23 Mar 2015 at 19:57

Hi everyone, being a recently diagnosed member of the pc club my story is as follows.

I had been having disturbed nights for the last 9 months with getting up every hour or so to go to the loo with a great sense of urgency and eventually went to my GP in September 2014, who put me on tamulosin tablets for three months to try to ease the problem. After returning to him with no improvement in December he gave me more Tamulosin together with another tablet, Finesteride, to possibly help and at the same time sent me for a blood test, "just to rule out things".

1 week later I received a letter from the hospital with an appointment to see a doctor.. No information of any sort was given. I saw a urology nurse who explained that my psa level was high and that I needed a bone scan together with a mri scan and would need a biopsy as well.
I had the bone scan first then the Mri and on the 23rd January had 8 targeted biopsies taken.

On 5th February I went to the hospital to see an understudy of the consultant who informed me that I had Prostate cancer, that I had a psa level of 63 and needed to start hormone treatment straight away and would need an endoscopy with a probable TURP and then radiotherapy after that.

I was with my wife and although I knew in my own mind that I was going to be told that I had cancer it was still a shock for it to be reality. We asked several questions and went home with a prescription for hormone tablets to be started immediately for three weeks and midway through the course I was to have a hormone implant.

Everything seems to have been quick and straightforward but we have also had to chase and follow up appointments rather than leave it to the slow nhs system, we have seen that it is slow to act but if you chase them they will fit things into their busy schedules.

On 19 February we saw the radiotherapy consultant who explained in a little more detail that I have a larger than normal prostate and that the cancer is confined to the prostate but is aggressive, all my biopsies were tested positive for cancer and that I will need radiotherapy 3 months from the start of my hormone treatment.

I have since had the endoscopy down the eye of my pump 17 march and will also need to have the TURP procedure asap, I have now been told that I cannot have radiotherapy until 2 months after the TURP. Now I am in the hands of the bookings secretary to get an appointment and cut the waiting time down for the radiotherapy.

User

Posted 24 Mar 2015 at 07:08

Good morning Puffingbilly, and sorry to see you here.

I'm absolutely sure that you will find many people more qualified than I to help you along this difficult path, and the website is full of useful information. Those that are well acquainted with both Pca and the website will advise you to go to the publications page and get hold of a copy of the toolkit if you haven't already, it really is very useful to have.

I not from you detailed description above that you don't mention surgery, has that been discussed/offered or do you or your doctors not consider it a viable treatment path?

Trevor

User

Posted 24 Mar 2015 at 07:33

Hi and you are welcome even though I'm. Sure you'd rather not be here.

Did they give you a staging eg T2a?

I too am surprised they didn't discuss options with you which would include surgery. That is of course unless you have health problems that rule surgery out.

One thing for sure it sounds like you are in the cureable camp with the PCa being contained to the prostate.

Ask any questions there are many experienced and knowledgeable people here

Bri

User

Posted 24 Mar 2015 at 08:12

Hi puffingbilly,

good news that the cancer is contained within the prostate.

Sorry that you are here, but in your situation, here is a good place to be.

atb

dave

User

Posted 24 Mar 2015 at 08:49

Hi
Your situation seems similar to mine, Tablets, hormone therapy (which I'm continuing now), TURP then radiotherapy. Have a look at my profile, I hope it will encourage you to see what can be done
Best wishes, Arthur

User

Posted 24 Mar 2015 at 08:58

Morning Puffingbilly (train enthusiast?)
Just to say welcome really. There is a lot of information and support on here, not just for you but your wife too.

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

User

Posted 24 Mar 2015 at 09:16

Welcome

Just make sure other options, Brachytherapy and surgery, are available to you and radiotherapy is YOUR choice. Make sure you read all the information on this site. Link below.

Paul

http://prostatecanceruk.org/prostate-information/choosing-a-treatment/what-are-my-treatment-options

Edited by member 24 Mar 2015 at 09:17 | Reason: Not specified

Stay Calm And Carry On.

User

Posted 24 Mar 2015 at 16:21

That seems a little more confusing as they would usually discuss all possible options if it is considered to be contained. Some men would rather avoid the toxicity of HT and possible side effects of RT and opt to have the prostate with the cancer removed. However there are also possible side effects from the operation which other men would rather avoid. But that decision should be yours.

To find the publications go on to the PCUK website and follow the links under publications

Bri

Edited by member 24 Mar 2015 at 16:24 | Reason: Not specified

User

Posted 25 Mar 2015 at 00:28

Puffing Billy, I too would encourage you to ask more questions about surgery - which is what most men would be offered in your circumstances / staging - but also to find out about whether brachytherapy is available to you. Whether you do this or not, please don't be concerned about a small delay before you start radiotherapy - research is showing that the longer you are on HT before the RT begins, the more likely you are to get a cure. Some oncologists now would want you to have the hormones for 6 months before rather than the old standard of 3 months. I hope that reassures you.

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

User

Posted 25 Mar 2015 at 08:54

Hello again Puffing.

IF you haven't already sussed it out the Toolkit is available through the site's publication section. Go back to the home page, click on INFORMATION, scroll down to OUR PUBLICATIONS (bottom of middle column)

Hope that helps.

My husband, as well as a few other members, went for Brachytherapy, which is where radioactive seeds are implanted into the prostate and left to do their thing.

I'm not sure though that a naturally large prostate would be covered though although they seem to implant different amounts for different people so maybe I'm wrong. Mine had 57 which isn't very many compared to some I've read about.

Ask away any questions you need answers to

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

Show Most Thanked Posts

User

Posted 24 Mar 2015 at 07:08

Good morning Puffingbilly, and sorry to see you here.

I not from you detailed description above that you don't mention surgery, has that been discussed/offered or do you or your doctors not consider it a viable treatment path?

Trevor

User

Posted 24 Mar 2015 at 07:33

Hi and you are welcome even though I'm. Sure you'd rather not be here.

Did they give you a staging eg T2a?

I too am surprised they didn't discuss options with you which would include surgery. That is of course unless you have health problems that rule surgery out.

One thing for sure it sounds like you are in the cureable camp with the PCa being contained to the prostate.

Ask any questions there are many experienced and knowledgeable people here

Bri

User

Posted 24 Mar 2015 at 08:12

Hi puffingbilly,

good news that the cancer is contained within the prostate.

Sorry that you are here, but in your situation, here is a good place to be.

atb

dave

User

Posted 24 Mar 2015 at 08:49

User

Posted 24 Mar 2015 at 08:58

Morning Puffingbilly (train enthusiast?)
Just to say welcome really. There is a lot of information and support on here, not just for you but your wife too.

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

User

Posted 24 Mar 2015 at 09:16

Welcome

Just make sure other options, Brachytherapy and surgery, are available to you and radiotherapy is YOUR choice. Make sure you read all the information on this site. Link below.

Paul

http://prostatecanceruk.org/prostate-information/choosing-a-treatment/what-are-my-treatment-options

Edited by member 24 Mar 2015 at 09:17 | Reason: Not specified

Stay Calm And Carry On.

User

Posted 24 Mar 2015 at 13:37

Thanks to all that have put comments and support on, I will be getting toolkit if I can work out where it is and how to get it!! Not very computer literate..

I was told that surgery was not an option as was deemed not necessary as the cancer is treatable and confined to the prostate. The only surgery being the TURP to enlarge the inside of my urethera and this should be done before the RT.

I was not told what level it is and did not think to ask, looks like it will be on my question and answers sheet for tomorrow when I see the urology nurse (they are very helpful and considerate).

Will be checking your profiles to help with info etc and thanks once again..

Ps not a train enthusiast but do live above the severn valley railway, Puffingbilly was an old cb handle many years ago!

User

Posted 24 Mar 2015 at 16:21

To find the publications go on to the PCUK website and follow the links under publications

Bri

Edited by member 24 Mar 2015 at 16:24 | Reason: Not specified

User

Posted 25 Mar 2015 at 00:28

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

User

Posted 25 Mar 2015 at 08:54

Hello again Puffing.

Hope that helps.

My husband, as well as a few other members, went for Brachytherapy, which is where radioactive seeds are implanted into the prostate and left to do their thing.

Ask away any questions you need answers to

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

User

Posted 25 Mar 2015 at 19:51

Hi all thanks again for points raised and duly noted.
I have downloaded the toolkit ok and quite a lot of it has already been given to me in paper form from my urology nurses. I have seen them today and finally done a flow test (every time I have been to hospital nobody said arrive with full bladder so before going into waiting areas I had been to the loo and emptied myself only to be asked if I could give a flow sample)

I have found out that I have a T2 medium risk prostate cancer with a Gleason score of 3+4 =7 . It is totally contained in the prostate and at the experts meeting it was discussed and decided that surgery and Brachytherapy were not an option as the best course of treatment is HT and RT.

Also the delay in RT after the TURP is not detrimental as HT is containing the cancer.

I am not too bothered by no surgery as I do not want to risk being incontinent or end up needing a catheter permanently and equally with the RT treatment the radiologist is going to zap the Lymph nodes as well. My frustration is now waiting for the urologist surgeons to see me to discus when and how they are going to operate and then getting on the shortest waiting list of one of them.

Nothing seems to be straight forward these days, I will just have to be patient (so will my wife) I worry more about her and what she is going through in all this, we are both praying for a non complicated outcome.

Cheers Puffingbilly...

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