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User
Posted 12 May 2017 at 14:28

Hello all,

I am (or thought I was) a pretty healthy 59 year old male who a few weeks ago went to the GP as I had been needing to pee quite a bit during the night. About 18 months ago I had my prostate examined following some issues with my bowels, at that time the GP told me the prostate was a little larger than normal but smooth so I felt OK about that. The bowel issues were resolved. A few months ago I started to need to pee more frequently during the night and it reached the point where it was having an effect on my sleep patterns so I went to see the GP. He suggested a PSA test after examining me again. The PSA came back ridiculously high!

I have spent a long time trawling through the info on the site following the PSA result and subsequent MRI and Biopsy. Well, now the results are in and it has shaken us to the core!

All 6 sites from the biopsy show cancerous cells, my Gleeson is 9 and it looks as if it may have spread to the lymph nodes. Currently awaiting a bone scan and then appointments with the oncology/urology team. This has all taken place within about 8 weeks so it has been a rollercoaster to say the least. I don't have any other obvious symptoms, apart from needing to pee a few times during the night. I suppose I am looking for anyone who has received a similar diagnosis. 

I would add that the team at the hospital have been amazing and very supportive but one of the pieces of advice I have been given is to seek advice from those that have been through it. So here I am! I am a realist and know that this is not good so nothing is going to shock me. I suppose it has made me a bit of a cup half empty person right now!

User
Posted 05 Aug 2017 at 08:28

Back again with an update.

Saw the Onco on Thursday, PSA down to 1.9 from 54.7 (felt like Christmas!!!) fortunately, side effects of HT have not been too bad, hot flushes I can deal with but the tiredness is something I am just not used to!

Start Chemo in 2-3 weeks and then Radiotherapy. After all the scans it appears it is locally advanced so I feel lucky that it has not gone any further. In fact, having spent many hours reading through the on line community I feel lucky full stop. Have to say, the info on here has been so helpful and I hope that, in time, I can also offer the same help and support to others.

Like everyone on this journey, I have no idea how the next stage will impact upon me but I am still determined to live life normally and more importantly enjoy it! 

User
Posted 12 May 2017 at 19:48

Hi Bigferg ,my OH is slightly younger than you at diagnosis (55) his PSA was 23 but also a Gleason 9 ,unfortunately his had spread to the lymph nodes so was offered HT and early chemo and now on stampede trial arm j .At first we felt our lives were over but not so ,Gary came through chemo fairly unscathed only missing 1 day of work due to tiredness .we are now 18 months from diagnosis and even though the fatigue is a problem Gary is still working full time .
Yes our lives have changed but we appreciate things more ,we have had 2 new grandsons to keep us busy and still go on holiday .
Keep positive and strong ,any info you need just ask and someone will have the knowledge or experience to help
Best wishes
Debby

User
Posted 16 May 2017 at 18:14

Lyn, my PSA was 54.7 which, on reading through lots of the posts on here I felt was ridiculously high..my perception!

Debby and blueytrew, thank you for your advice and experiences.

I had my appointment with the oncology consultant today. My bone scan is all clear which was a massive relief to me. He has put me straight on to hormone treatment and is talking about taking an aggressive approach with the possibility of Chemo in 2-3 months. He believes that as I am fit and healthy...apart from the obvious....that it would be the best approach. I do have to have one more CT scan to check how far into the lymph nodes it may have spread although he believes it may well be confined around the pelvic area but wants to make absolutely sure.

 I now intend to build on my fitness in the next few weeks to prepare myself and take the advice about looking after me and mine. I am lucky to have my family around me so that is a real plus.

I have really benefitted from this site already and the information I was able to get prepared me for the conversations I have had to have over the last few weeks. I went to the dark places with the fears and worries related to the word Cancer like most people who hear it when it relates to them and theirs. I feel lucky now and fully intend to develop and maintain the positive outlook that so many on this site obviously have.

Once again, thanks folks, you really helped at what was a very difficult time! I know the road ahead still has it's rough bits but I already feel more positive about the prospects!

 

User
Posted 02 Jun 2017 at 14:17

Back again,

Been on Cyproterone Acetate for three weeks now and today had my first Hormone injection (Prostap). I am awaiting a further CT scan just to check the spread into the lymph nodes although the consultant was confident it was fairly loccalised. However, he has suggested going straight to Chemo using Docetaxel followed possibly by radiotherapy. We are determined to stay as positive as possible and I am lucky to have an amazing OH and family around me.

Just got to wait for side effects (if I experience any that is!) to kick in following the hormone injection. 

 

Edited by member 03 Jun 2017 at 10:48  | Reason: Not specified

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User
Posted 12 May 2017 at 19:06

Okay, so what was the PSA. In terms of prostate cancer, 'ridiculously high' could be anything from 10.0 to 13,000

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

User
Posted 12 May 2017 at 19:48

Hi Bigferg ,my OH is slightly younger than you at diagnosis (55) his PSA was 23 but also a Gleason 9 ,unfortunately his had spread to the lymph nodes so was offered HT and early chemo and now on stampede trial arm j .At first we felt our lives were over but not so ,Gary came through chemo fairly unscathed only missing 1 day of work due to tiredness .we are now 18 months from diagnosis and even though the fatigue is a problem Gary is still working full time .
Yes our lives have changed but we appreciate things more ,we have had 2 new grandsons to keep us busy and still go on holiday .
Keep positive and strong ,any info you need just ask and someone will have the knowledge or experience to help
Best wishes
Debby

User
Posted 12 May 2017 at 21:40
Ten years ago my OH was in a similar situation as you. But we are still here! I know that it's a huge shock but we kept going through surgery adjuvant radiotherapy and hormone treatment. But, most importantly, things are changing, cancer treatment has become more refined so try not to look on the darkest side. Look after yourself and your loved ones, ask lots of questions, dowload the great toolkit on this site, take a deep breath, you are not alone.
User
Posted 16 May 2017 at 18:14

Lyn, my PSA was 54.7 which, on reading through lots of the posts on here I felt was ridiculously high..my perception!

Debby and blueytrew, thank you for your advice and experiences.

I had my appointment with the oncology consultant today. My bone scan is all clear which was a massive relief to me. He has put me straight on to hormone treatment and is talking about taking an aggressive approach with the possibility of Chemo in 2-3 months. He believes that as I am fit and healthy...apart from the obvious....that it would be the best approach. I do have to have one more CT scan to check how far into the lymph nodes it may have spread although he believes it may well be confined around the pelvic area but wants to make absolutely sure.

 I now intend to build on my fitness in the next few weeks to prepare myself and take the advice about looking after me and mine. I am lucky to have my family around me so that is a real plus.

I have really benefitted from this site already and the information I was able to get prepared me for the conversations I have had to have over the last few weeks. I went to the dark places with the fears and worries related to the word Cancer like most people who hear it when it relates to them and theirs. I feel lucky now and fully intend to develop and maintain the positive outlook that so many on this site obviously have.

Once again, thanks folks, you really helped at what was a very difficult time! I know the road ahead still has it's rough bits but I already feel more positive about the prospects!

 

User
Posted 16 May 2017 at 22:45

Well I am relieved for you! PSA in the 50s isn't too bad and more important, the onco believes it may only be locally advanced. Early chemo is an interesting prosoect - you may have picked up already that chemo does not cure hormonal cancers and so until recently was only given in the last stages of the disease to try to make men more comfortable for a while longer. But recent research has shown that for some men, chemo given early makes the hormone treatment more effective so fingers crossed for you.

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

User
Posted 02 Jun 2017 at 14:17

Back again,

Been on Cyproterone Acetate for three weeks now and today had my first Hormone injection (Prostap). I am awaiting a further CT scan just to check the spread into the lymph nodes although the consultant was confident it was fairly loccalised. However, he has suggested going straight to Chemo using Docetaxel followed possibly by radiotherapy. We are determined to stay as positive as possible and I am lucky to have an amazing OH and family around me.

Just got to wait for side effects (if I experience any that is!) to kick in following the hormone injection. 

 

Edited by member 03 Jun 2017 at 10:48  | Reason: Not specified

User
Posted 02 Jun 2017 at 17:06
User
Posted 02 Jun 2017 at 17:36

Good luck with the treatment Bigferg

****

We can't control the winds - but we can adjust our sails
User
Posted 02 Jun 2017 at 19:20

Hi bigferg,

I had similar experience 2 years ago on dx. My symptom was also peeing more than usual and after initial tests was told was Gleason 9 psa 294 with mets in bones. Looks like same treatment as you with HT and then onto chemo 3 months after. Got through that a lot easier than expected and go PSA down to 3.6.
After all treatments felt fit and well and still feel that. It's seems ridiculous that it was only peeing more was and is really the only symptom! Have a look at my bio and you can see timescales for my treatment.
All the best
Steven

User
Posted 05 Aug 2017 at 08:28

Back again with an update.

Saw the Onco on Thursday, PSA down to 1.9 from 54.7 (felt like Christmas!!!) fortunately, side effects of HT have not been too bad, hot flushes I can deal with but the tiredness is something I am just not used to!

Start Chemo in 2-3 weeks and then Radiotherapy. After all the scans it appears it is locally advanced so I feel lucky that it has not gone any further. In fact, having spent many hours reading through the on line community I feel lucky full stop. Have to say, the info on here has been so helpful and I hope that, in time, I can also offer the same help and support to others.

Like everyone on this journey, I have no idea how the next stage will impact upon me but I am still determined to live life normally and more importantly enjoy it! 

 
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