Which road to take...

User

Posted 10 May 2018 at 20:30

I'm 51 years old and presented at my GP's with the usual urinary symptoms, i.e. always going for a pee, up twice in the night, never felt like I'd finished etc etc. It was actually trip to Alton Towers with my family that prompted me to see my GP. My lad commented that I was constantly looking for a toilet and I should realise that might be a sign of cancer...

GP did an exam, reporting no hardness but blood test revealed a PSA of 12.2. He referred me for a biopsy, which I had in January, which resulted in a 5 week long urinary tract infection. Nasty, actually went a little mental for a couple of days and didn't really know which way was up.

Results showed ASAP (I think that's right) and as a result I was sent for an MRI scan. Hateful, worse than the biopsy, I get really quite worked up about being confined and they pretty much tied me down to the machine!!!

MRI scan showed an area of concern and I went for another biopsy. This time I was called back to see a Urology Nurse and mistakenly thought this was good news. If I had cancer they'd send me to see the consultant first. Wrong, they just give the dirty job to the poor bloody infantry! I mean no offence to nurses anywhere, my wife is a nurse and I know just how hard they work.

Turns out with a PSA of 12.2 from two of three cores in the target area I have a Gleason's Score of 6, which I understood from a long conversation with the two nurses I saw is not dreadful news.

I was sent away with leaflets describing the three treatment options currently suitable for me, Radical Prostectomy, Radiotherapy or Active Surveillance. The nurses seemed to be suggesting AS would be my favoured option but the Multi-Disciplinary Team need to meet to discuss my options and when I see the consultant in a week or two they will advise. Still waiting for an appointment.

I'm not a typical bloke, I'm a bit of a sharer (see above!) and like to discuss any problems or decisions I have with appropriate people, be they friends, family, colleagues the funny lady on the 110 bus etc. This time it's different. I have kept this from my children for now, they're 22 and 18 yrs and both going through important exams, job interviews etc. Too much on their plate for them to carry this too. I will tell them when I have to which will hopefully be after they've gone through all the current stresses.

Only my wife, my boss and three close friends all sworn to secrecy know. I'm finding it really hard to keep quiet, so I was glad to find this forum with so many inspirational strong people.

I guess only I can make the decision on treatment, but at 51 years old I am dreading the idea of surgery or radiotherapy affecting my libido and making my existing ED problem even worse. For now the little blue pills do a fine job, but I understand they may no longer help me? In addition I don't think my job, which is about 75% office based is great for someone suffering with incontinence.

Active surveillance does seem like the least worst option, but I don't know if I can face the stress of knowing there's cancer inside me and I'm doing nothing active to deal with it.

I'm finding it hard to sleep at night and as a result hard to concentrate during the day at work. I don't fly airliners or drive trains so being distracted wont hurt anyone but my career prospects.

Apologies for the download but I need to speak to someone who knows what they're about. I cant really discuss with my wife much as she understandably becomes very upset. She has told me already she feels overwhelmed by my diagnosis. I know how she feels. I absolutely worship the ground she treads on and if she doesn't want to talk about it then that's fine. She has of course been with me to all of my appointments so far.

I'm most concerned about making the right treatment choice. I dont wish to sound cold hearted and I dont want to offend anyone but I dont want to die of cancer. I've read up a bit on bone cancer, as the final stages of prostate cancer, and it scares me witless. I'm not afraid of death per se, but I am afraid of making the wrong choice and suffering a long, painful road to death. I dont want to go through it, and I dont want my family to have to watch it.

So there we have it, all downloaded. Happy to receive feedback or comments, specificsally from anyone who has had to make the same treatment choice.

Thanks for getting to the end.

User

Posted 10 May 2018 at 23:19

Hi Boston,

Welcome to the forum.. seems a strange greeting!

My husband was diagnosed at 54 also with a Gleason 6 (3+3).

We sat in shock listening g to the options as the potential side effects of the radical treatments are clearly significant, life changing and effect men’s mental health as well as physical.

One fifference is my husband had zero symptoms and was diagnosed instread following a company medical.

Everyone feels different about the options. My husband did not want to lose his prostatecfor the sake of a Gleason 6 as he was worried it was an over treatment of a low risk tumour..

Do you know the size of the tumours ( what sort of bippsy did you have?

My husband is in the private system via BUPA and the consultant he sees is a bid advocate of active surveillance. We were recommended surgery by the first consultant we saw who diagnosed the PCa . It appears surgeons recommend surgery etc!

My husband did opt for a trip to the USA for an experimental focal treatment but this was a big investment and no one Evers knows what the right thing is.

With a Gleason 6 I wouldn’t rush a decision however. Do lots of research and read the fab threads on here where people have shared there stories and experiences... in a very open way.

We didn’t tell our children. ( grown up) straight away as we got the diagnosis on 22nd December and did a Christmas Eve with all our oldest friends and family having told nobody. We had a holiday booked so spent 2 weeks researching and told the children when we got back which was easier as we had made a decision by then.

So everyone has to make their own decision about what is right for them and this site really helps with gaining understanding of all the decisions made.

Feel for you.

Regards

Clare

User

Posted 11 May 2018 at 09:47

Hi, It's a tough decision. During the period of indecision it's easy to imagine all kinds of things. Yet once you make the decision you become more focused and forward looking. As you say, if you choose AS you might still be worried and in reality you'll probably have it at the back of your mind forever now whatever you choose. I'm a worrier but so far my post op results have been alright so I haven't lost any sleep. I don't know what it would be like if my psa started rising.

If I was 51 I don't know what I'd think but I feel that with a 3+3, depending on where it is, there's a good chance of having it removed or radiated and living happily ever after. ED and incontinence are a risk. Depending on where it is there is a good chance of nerve sparing. A lot of these things also depend on the skill of the surgeon.

Like you I've only told closest family and with only 2 days in hospital and able to get about afterwards no-one has noticed. I did wonder if I could hide 30 trips to the hospital if I had radiation. It's very tempting to tell people and it only needs you to do it once, but I don't want people asking how I am and talking about it.

No-one wants to die of cancer but we all die of something and it can strike at any time. It's common for a specialist nurse, from Macmillan, to give results and it's very useful as you get to know her and she's a very useful contact during diagnosis.

There are other who might tell you to try AS or RT, it's not an easy choice. Good luck.

User

Posted 11 May 2018 at 09:53

Hi and Welcome to the club,

It is very understandable the fear and shock that comes after diagnosis of PC and like you i felt much the same and had only one course to take, Lets fight it.

Firstly I must say I have had excellent service from all the Doctors Nurses and Specialists that treated me on the the NHS and the nurse that gave you the news would have been a qualified Oncology nurse so best not to knock them.

As for how you tell the rest of the family i think in most cases they are stronger than you think even the young ones.

You have been lucky to have a choice of treatments with such a low Gleason with every chance of success unlike some of our other members that have been less lucky but are coming back to the site for support and to help others in the same boat.

I am 72 next month and coming up to 20 months since having my Brachytherapy treatment at Mount Vernon,with PSA 2.19 and Gleason 3+4=7 if you click my avatar that will give you more idea of the journey so far.

My PSA was down to 0.44 in January with the next test in June with my Oncology nurse so fingers crossed.

To date i am very pleased with the treatment received and did i make the right choice about radical surgery or Brachytherapy i will never know and as for ED and the blue pills, better by the week but it will i will never be a 19 year old stud again but maybe in my dreams.

Good Luck John.

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User

Posted 10 May 2018 at 23:16

Hi Alistair,

Welcome to this forum though sorry you join us because you have been diagnosed with PCa.

Firstly, there is no chance anybody here would take offence at your saying you didn't wish to die of cancer. We know it can be a rotten way to go so do what we can to do to avoid it or at least delay it by by appropriate treatment when expedient.

We are not given a full diagnosis but from what you say in particular about being given the AS option, it seems there is no urgency in making a treatment decision. Therefore, I would suggest you download or obtain a copy of the 'Toolkit', available from the publications section of this charity. It details treatments and provides helpful information for somebody like yourself to gain a better understanding of PCa. This is important because it is you that has to decide whether/when to adopt AS or one of the other treatment options.

I wish you well whatever you decide.

Barry

User

Posted 10 May 2018 at 23:19

Hi Boston,

Welcome to the forum.. seems a strange greeting!

My husband was diagnosed at 54 also with a Gleason 6 (3+3).

We sat in shock listening g to the options as the potential side effects of the radical treatments are clearly significant, life changing and effect men’s mental health as well as physical.

One fifference is my husband had zero symptoms and was diagnosed instread following a company medical.

Everyone feels different about the options. My husband did not want to lose his prostatecfor the sake of a Gleason 6 as he was worried it was an over treatment of a low risk tumour..

Do you know the size of the tumours ( what sort of bippsy did you have?

My husband did opt for a trip to the USA for an experimental focal treatment but this was a big investment and no one Evers knows what the right thing is.

With a Gleason 6 I wouldn’t rush a decision however. Do lots of research and read the fab threads on here where people have shared there stories and experiences... in a very open way.

So everyone has to make their own decision about what is right for them and this site really helps with gaining understanding of all the decisions made.

Feel for you.

Regards

Clare

User

Posted 11 May 2018 at 09:47

There are other who might tell you to try AS or RT, it's not an easy choice. Good luck.

User

Posted 11 May 2018 at 09:53

Hi and Welcome to the club,

It is very understandable the fear and shock that comes after diagnosis of PC and like you i felt much the same and had only one course to take, Lets fight it.

As for how you tell the rest of the family i think in most cases they are stronger than you think even the young ones.

My PSA was down to 0.44 in January with the next test in June with my Oncology nurse so fingers crossed.

Good Luck John.

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