My Turn...

User

Posted 01 May 2015 at 00:03

Hello, my name is Nevyn and I have prostate cancer.

Went to my GP just after Christmas with pains in the back and groin that had come on suddenly. I've had a dodgy back on and off for years (I'm 57) but this was a bit different. The groin pain was new though and was the main reason for my first visit to the docs in a long while (always been healthy, never been in hospital).

After a chat about symptoms, he gave me cocodamol for the back and sent me for a blood test ready for that chat in the new year. 3 days later I get a letter from the surgery, basically saying get your.... down here pronto.

His first words were "Remember that conversation we were going to have in the new year? Well we're having it now". From the results he was pretty certain I had PC. He did a DRE which told him it was enlarged. Gulp.

Long story short, he put me on the 2-week scheme. I've had an MRI, a bone scan (plus xray because the radiologist? saw something he didn't like) a biopsy and a flow test. Got the result end of Feb, confimed advanced PC. PSA 30.9, Gleason 4+3. Nothing in the lymph nodes but signs in the lower lumbar. .

I'm on hormone injections (Triptorelin) every 4 weeks, just had my 3rd today. Also had 3 weeks of Bicalutamide at the beginning. They want to see me in 3 months, i.e. End of May. No prognosis yet, I guess it's too early...

I must say it's heartening to read comments on here saying "still here after x years, I'm hoping to say the same. Thanks for listening.

User

Posted 01 May 2015 at 04:18

Hi Nevyn, sorry you find yourself here.

I don't know enough about your situation to make any comment about where you are but like you I was diagnosed recently, I was 49,(now 50) but have Gleson 9.

In our unfortunate positions it is so important to stay positive, live as much of your life as you can, eat healthily and try to understand what the doctors are trying to do for you. In terms of prognosis, you can get a broad one by asking next time you see the consultant however the good news is that whilst the drugs are controlling the growth they don't really know, I was given 2 to 10 years based on current knowledge. Fortunately they are learning more about PC every month so it is quite possible that it may be longer.

Next time you see the consultant it may be asking why you as in the drugs you are on and why not (for example) chemo, radiotherapy, any other drugs, or is there a trial that may make sense for you etc, etc I don't know the answers but they should explain so you are comfortable with the reasons.

You have already realised that this forum is a great place to come whenever, there are no silly questions of emotions in fact the worst we can do is bottle it up inside so do share your fears, thoughts and successes along the way. If you get the chance update your profile with PSA score and staging ie I am T4 M1N1a PSA now 5 (was 342 on diagnosis).

Take care my friend and look forward to reading more about you over time.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 01 May 2015 at 08:54

Good morning Nevyn and welcome

"Long story short he put me on the two week scheme" was that the GP only you don't mention any referral to hospital.?
Just curious, being that on here we are a really nosy lot.

Anyway, as Kevin says, ask any questions here that you want. Somebody is bound to know the answer

Best Wishes
Sandra

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

User

Posted 01 May 2015 at 12:01

Hi Nervyn

Just wanted to say Hi and welcome to this forum. Strange as that may sound when dealing with cancer but this is a great place for support and information.

I assume that the two week thing you mentioned is the fast track NHS referal scheme for any patient with cancer symptoms. That is good it sounds like your GP is a good one so keep him very much involved, having a supportive GP helps so much.

If you can add a little information in your profile on who you have seen so far ie just a urology consultant or an oncologist etc. That helps us to provide any appropriate info.

Kev has mentioned trials so you might want to ask your hospital consultant about any that may be available to you. If your treatment is private then trials may not help but if you are receiving NHS treatment there are some that can make a difference, check out Stampede trial as part of that is currently looking at advanced PCa. It is a huge trial that has been running for a long time. Some early findings and recommendations from it are coming out in early June which will show just how much it is helping.

Anyway just ask here about anything and someone will try to help.

Best wishes

User

Posted 01 May 2015 at 17:49

Hi all, thanks for the welcome.

Yes, it was the GP who referred me and he is a good one. When I first saw him he looked at my notes on screen and said "We don't know anything about you. So the fact that you're here means there's something bothering you". It was nice to be taken seriously straight away. He called it the 2 week scheme, saying I would be seen quicker. Turned out to be an accurate description, every appointment at the hospital was 2 weeks away, then another 2 weeks :)

At the initial consultation at urology, the doctor was rattling off the tests he wanted and the nurse/assistant was sticking orange 'Fast Track' stickers on eveverything.

I've already had an invitation to a DNA trial and spoken to the specialist nurses at the hospital. I have many more questions lined up for the consultant...

Edited by member 01 May 2015 at 18:11 | Reason: Not specified

User

Posted 01 May 2015 at 23:39

The 2 week treatment sounds like a great service, under these worrying circumstances, others on here have had very different experiences.

This has given you a good start into finding out more quickly the extent of the problem, at least you can get stuck into a treatment ASAP.

Best wishes,

Alison

User

Posted 02 May 2015 at 17:44

Nevyn

Sorry I spelt your tab wrong last time predictive 'text' seems to do its own thing sometimes!

Do you know the name of the DNA trial you have been approached for?. I am particularly interested as, based on my own experience I have always believed that this approach would work for prostate and other cancers.

I had heard that a trial for a DNA targeted drug for PCa was iminent.

I think it is for a drug called Olaparib which is in a group of drugs called PARP inhibitors.

Please can you let me know?

Best wishes

User

Posted 12 Jun 2015 at 18:56

Mo,
Profuse apologies for the long delay in replying, my mind has been all over the place.

The DNA trial is the "UK Genetic Prostate Cancer Study: Epidemiology and Molecular Genetics Studies" - Ethics committee No. 06/MRE02/4.

So far I've had to fill in a family tree with any history of cancer and other major illnesses. They ask for permission to access my samples etc. which I'm happy to do, especially if it helps someone somewhere.

In other news, had the 3-month appointment with the consultant today (slight delay, should have been end of May).

My PSA is down to 4.3 (was 30.9) but I wonder if they were expecting it to be lower? I'm being referred to Leicester (currently attending Kettering General) for possible chemo or radio therapy. He said they were trying to be more proactive with patients by doing this earlier instead of waiting for the PSA to rise again.

I'm getting a pain in the groin at the top of my right leg and another pain in the back higher up on the right that has got slightly worse in the last two weeks.The consultant said there was nothing showing on the MRI for either area (The bone scan said L2 lower lumber so not the same place).

Now waiting to see what Leicester says.

Staying Positive!

User

Posted 12 Jun 2015 at 21:55

Hi Nervyn

glad you posted again. The genetic trial you are involved in is the one that is triggering a lot of interest in targeted therapy This is where the medics can look at the cancer geentically and actually see which process is behaving abnormally. It is very clever and incredibly leading edge but it does mean that if they pinpoint it accurately treatment can be so much more specific. If that means avoiding some of the horrible side effects of other treatments then it will be a big bonus.

One of the links they have already found is with BRAC gene 1 & 2 responsible for many cases of breast and ovarian cancer in Women and breast cancer in Men (yes it can happen)

Your PSA is coming down really well so the Hormone injections and Bicultamide are doing their job for now having chemo or RT and even both is considered to be the new Gold standard treatment for young otherwise fit men diagnosed with advanced PCa. Look at Kev Irun"s profile for a really great case file of a truly amazing man.

The groin pain may be down to changes in your testosterone my husband had a lot of trouble with this right through his illness, bicultamide seemed to make it worse. Hopefully your proposed treatments will take you away from this but you should mention it at your next review.

I have enrolled on a specialist course all about targeted treatment of cancer through genetic mapping it is something I really believe holds the key to a better future for late diagnosis PCa sufferers my Husband was one of those and regrettably this reseacrh and trials did not come soon enough for him.

I guess you can appreciate why i am really grateful that you have posted again

Best wishes

User

Posted 12 Jun 2015 at 23:11

Hi Mo,
Sorry to hear about your husband.

I've been Googling and it sounds really interesting. I'm one of the target groups, under 60 and no family history.

By the way, I was only on Bicalutamide for the first three weeks. The Triptorelin is due to change to 3-monthly at soon.

I'm also on Tamsulosin, which is working, but does sometimes drop my BP a bit low.

TTFN

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