Hi Wal,

I have a different type of cancer - but here are some pearls of wisdom anyway!

1) Statistics and advice on the web.
These should be treated with caution as much research is years out of date due to advances in treatment over recent years. Anything published before 2012 is probably based on data collated well before then (say between 2000 and 2010), so conclusions were reached about the effectiveness of treatments almost 10 years ago..

2) Survival rates - times.

See 1) plus these are usually "mean" figures of the population of people with a certain condition. These rarely take into account other factors such as age, fitness or other pre-existing conditions all of which can influence clinical outcomes.
e.g. 58 is relatively young and the fitter you are the more likely your body will be able to tolerate various treatments and recover from them.

3) Positive but realistic attitude

Essential for your sanity and for the sanity of those around you!

Forget the psycho-babble, there is evidence that being miserable contributes to a lowering of the human immune system and being positive raises it.

.

Hope this helps :-)

Dave

Hi,

I told my  GP about slow peeing in Feb. he did a quick check and said he thought he could feel something that needed checking out. I was totally unconcerned so waited 3 weeks for a blood test and another 3 weeks for the result. He said I had a psa of 14.5 and needed to be referred for further tests. The appointment came back for the end of July. Good-o,I thought, it can't be serious if they don't want to see me for 3 months.

Anyway, as time went on and I started to think a bit about it, I mentioned it to a friend who said "It's too serious to wait that long, get a private app". I got one in 2 days and quite by chance it was with the doctor I was booked in to see on the NHS. He was furious that my app was 3 months, he said I should have been seen within 2weeks! He also said I was to spend no more money privately and he will arrange tests quickly through the NHS. I had a biopsy (4+4) and a MRI. At the results app I was devastated to learn I had prostate cancer. I had a further test for bone cancer which luckily was negative.

I had a radical prostatectomy last Saturday and came home on Monday. The surgeon said it went very well an I could have the catheter out on Friday. Unfortunately, they can't do it 'till Tuesday. The catheter is something else! If you want to know about it, ask.

To conclude, I' ve been through this cancer thing relatively easily. I have had some very dark moments but I have always been positive. Luck has a lot to do with the result but a positive attitude will pull you through.

Hope this helps someone.

Jim

Jim,

If you hadn't already, it would be worth talking to your GP about the delay the practice caused in your diagnosis and treatment. Until last week I worked in the NHS and I know there is a quandary that GPs are often in. I had a similar issue with my Mum's treatment and, initially, with my own.

As I understand it, if they put "query cancer?" on the request it is put in as urgent and the two week rule/guidelines apply. If they don't, the 18 week guidelines apply. Their quandary is that they get censured if they put too many "query cancer?" requests in, as this clogs up the system and delays "genuine" cancer patients,  BUT they also get censured if a case goes through which turns out to be cancer - in which case the two week rule is applied retrospectively!

I discussed my case with my GP and, as a result she told me a month later me that she had subsequently treated a case with similar symptoms as "query cancer" which she said ordinarily would have gone in as routine. He had cancer too but it was caught at an earlier stage than mine.

Glad to hear that you've had a positive outcome :-)

Stay lucky!

Dave

Hi again,

Thanks gentlemen for sharing your experiences with me.

Overwhelmed (John), your circumstances and age etc sound very sililar to mine, so you know how I am feeling.

Countryboy - glad to hear it all went well for you and you have had the surgery and are recovering.

The latest events are:

The specialist Urology nurse e-mailed me with the results of my MRI & Bone Scan and said that they both showed no spread of cancer - phew - good news indeed! She also said that the cancer within the Prostate, although low volume, is right up against the wall of the prostate and this looks as if it is causing it to bulge, but due to some bleeding (from the 3rd set of biopsies!) it is not possible to assess this fully. Mmmmmmm a bit worrying.

After asking for further information, I have now been told that the T Stage is "early" T3a, no Nodes & no Metastasis, but due to the bulking of the Prostate they cannot say that it is definitely localised although there is no evidence of spread beyond the Prostate. Also, the Multidiscliplinary Team who discussed my case upgraded my Gleason Score from 4:4 (8) to 5:4 (9) which now makes it "high risk". Even more worrying!

These latest revelations are scarey, so I rang the nurse and she assured me that although it didn't read well, it is still good news that it hasn't spread.

I received 2 x appointment letters today; one to see the Urology Consultant next Thursday, 11th Sep 14 and one to see the Oncology Consultant the week after, Thursday 18th Sep 14.

I (and my wife) have already decided that I will opt for surgery, so hopefully this can be finalised and arranged next week - fingers crossed - and I won't even need to see the Oncology Consultant about possible Radiotherapy.

The waiting for the results and then the subsequent appointments is the worst part and I just want to get on and get it sorted out.

To be continued .........

Wal

Hi again

I so hope the surgery goes well -  keep positive and smiling. I have such faith in my own Oncology team that I could sound like an marketing advert for them, but the point is, keep talking to them and share your concerns.  My experience is that you are NOT being a nuisance, so share with them your concerns about "spreading" and the upgrade in the Gleason score.  

Oh how I can relate to the waiting and impatience to get things "sorted out"!!!!   No advice but just try to relax though (how easy is that - NOT!! - but try anyway please)

Best wishes

Overwhelmed (John)

Hi John,

Thanks for your message of support.

I hope you are doing OK and the Chemotherapy is doing for you what it should be doing?

In my case, I am being (and feel) remarkably upbeat and positive and it is my wife who is having trouble sleeping whilst worrying about what may happen.

The days really seem to be dragging by until I see the Surgeon this Thursday and then I will (hopefully!) have more information on the prognosis and more of an idea on the way ahead.

Onwards and upwards .........

Wal

Hi Wal

I haven't been here for a while, because I didn't to be. 

I was diagnosed with prostate cancer (3+4, T2b, PSA 5.6) in 2010 when I was aged 56.  I had a robotic radical prostatectomy, and the cancer was confined to the prostate.  My PSA dropped to <0.1 and has stayed there ever since - I had my most recent test a few weeks ago.  I am 99.999% continent, but I do have ED (although it's not a bad as I thought).

Your case is a little more advanced than mine, but there is every reason to hope that surgery will effect a complete cure.

Just to let you know that there is life on the other side of the mountain, even though the path seems a little perilous and frightening along the way.

Bob

Hi Bob,

Thanks for your words of reassurance - it is much appreciated and good timing at the mo as I am off to see the Urologist Surgeon tomorrow!

You really have been thaere and done that - glad it all worked out OK for you.

If it all goes to plan for me he will offer me the option of robotic surgery ASAP and I will gladly have it all removed - cancer and all.

However, I am a realist and I do understand that life doesn't always go as smoothly as we would like, so there could be complications before, during and after any operation - but I am an optimist and feel that everything will be OK in the end.

So thanks again for taking the trouble to put your comments and I will update online once I know what is happening.

Wal

Good luck Wal.

Let us know what they say.

FWIW I was treated at Southmead Bristol. I can't fault their treatment of me.

Bob

The latest update.

I went to see the Urology Surgeon this morning and I talked everything through with him in detail and I am suitable for surgery, so I signed the consent form for surgery there and then and am now on the waiting list! It should take place in the next four weeks.

He cannot give a full and detailed prognosis until 6 weeks after the surgery using the post-surgery biopsy results and a with new PSA test.

He thinks that because of the position of the cancer (up against the Prostate wall) he will definitely have to remove the nerve cells on the left hand side, but the right hand side should be OK and he may not be able to remove all of the cancerous cells, which will mean that I will also need follow-up Radiotherapy, but this will be confirmed if this applies and discussed in detail at the 6 week follow-up meeting.

So, more waiting around for a date for the Robotic Radical Prostatectomy and then all systems go.

To be continued .........

Wal