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newbie new diagnosis!

User
Posted 19 Jul 2019 at 18:43

Hi all, 

I'm sure this topic has come up many times before, but all new to me! Some of you might find it useful as some of my numbers don't add up..... apologies if a bit long winded, but any advice appreciated. (I have read loads on here already and find it useful) here goes:-

Grandfather died from PC, and Father has had it diagnosed at the age of 75 and been treated with RT and Ht and is in remission with some side effects.

I was a top level competing cyclist until recently, (retired now) and I still cycle thousands of miles on the bike at a high standard.

I went for my 1st psa test aged 49, and then followed it 6 months later with an examination - all good. (I never had one above 1.3)

went for psa followed by exam every 6 months until I became ill in 2017 (unrelated viral infection) so missed a couple of checks.

when everything settled again after my illness, I noticed blood in my semen, (early 2018) so  I went for a check up with GP who noticed a small lump (very small- it was that small that follow up struggled to find it)

So here started the investigations...

note:-Psa no higher than 1.3 anytime even riding the bike to blood clinic.

Urologist struggled to find the lump, but confirmed and things progressed rapidly, MRI scan next day! which showed the abnormality, (but no obvious breakout) so was referred for TRUS biopsy.

TRUS biopsy all negative, and in the follow up with consultant I was ready to let it lie and 'keep an eye on it' but after a bit of a discussion he steered me towards template biopsy just to be 100% sure.

So on Monday this week I went fairly confidently for the results, only to be told it was a positive, but nothing to worry about:- 1 biopsy out of 30, Gleason 3+3. 

so in terms of catching it early, its the earliest of early!

Specialist nurse was great and explained all the 3 options with a mild suggestion of AS. which seemed a good option at the time, but I think I was in a bit of shock...

nobody will tell you which option is best for you as everyone is different.

I would imagine most of you will have had similar reactions when it starts to sink in, and I have been reading all the facts from the toolkit and the leaflets that she gave me, gathering the facts. I rang her today explained that I was struggling to decide which route to take and asked loads of questions, outcome of which is I have been referred for discussion with surgeon and oncologist.

I have a good idea which way I am going to go but I won't say until I've heard your comments, and I will say later.

A few key facts in here for me that anyone wondering about getting checked should consider:-

1. psa test on its own is not conclusive (i think fairly well known now but not pushed enough) 

2. TRUS biopsy can be inconclusive.

3. I would imagine my case is fairly rare.

I'm fairly positive at this point and I have to say all medical staff have been amazing, but I have also been very proactive myself and i'm sure this helps.

Hope this makes sense and some of you will find it useful, and do I need to post it in another category?

let me know your thoughts.....

 

 

User
Posted 19 Jul 2019 at 20:47
Hi and welcome Robin

It reads you're aware of not bike riding before blood test. Don't let a low PSA persuade you it's ok to. For as you point out PSA is not conclusive but neither is it a guide to how aggressive PCa is.

Certainly take note of Grandfather and Father but not overly so.

1 core out of 30 at G6 and blood in semen suggests it needs monitoring but more than that at this point is your choice.

Ray

User
Posted 19 Jul 2019 at 21:10

Hi Ray and thanks for your reply,

yes I was aware that you arent supposed to ride before a psa, have tried with and without it made no difference with mine but thats just me...

spot on with your reply i think, 

many thanks,

Robin

User
Posted 19 Jul 2019 at 21:34
Some consultants do not even consider a 3+3 Gleason as being cancer so in the majority of cases men with this diagnosis would have time to be monitored (AS) and only have treatment if the it changed to a 4 element or was close to breaching the prostate. However, there are no certainties with PCa and a small number of men diagnosed with a 3+3 who have surgery have been found to have an upgraded Gleason when their removed Prostate is examined in the lab. So, it really comes down to whether you wish to delay treatment and likely/possible side effects or maximize the chance of ridding yourself of a cancer that may never be significant or at least for a considerable time. So it's your attitude towards risk and quality of life.
Barry
User
Posted 20 Jul 2019 at 00:46

Hi Robin

Welcome,

I assume the blood in semen was a one off then ?  (although I assume you had blood in semen for a while after biopsies ?)

My input :  Neither 'parent'  presented with early onset .  Why do you say rare?  On what basis ? Where was the 'lump' then?    This is currently low risk on this data, as you will have been told no doubt.   

What options if not 'AS' have you discussed or considered then ?    I (you asked for advice !) would wait 3 months (ie another PSA test), then review.  PSA trend is a fairly good indicator (ie NOT specific values) once a 'base' is established.  Can you post / update your profile with PSA values to date and dates taken etc.   From my understanding recent 'prostate activity' before PSA bloods taken makes very little % value diff, (ie 10% or less, IIRC from a source I can't find or quote at the moment).  

As others have posted, it's your attitude to risk.  Knowing you must be a fit guy and at 52 young, do not rush.  Danger of 'over treatment' ? Do you agree ?    The term 'aggressive' is relative and frightens folk I feel.  I know at the time of my dx your head is all over the place (I didn't understand the terminology much at all)

I do understand this can be 'masked' by BPH, prostatis, infection, injury etc   (see my profile, which includes my brother, his PSA was 18, then 3.5 just before RT, with no treatment at that stage)    Although our 'scores on the doors' were very similar (he is 8 yrs older than me) , I was asymtomatic, whereas he had had TURP and poor flow for some years) . My lesions were all over my prostate, yet very small, I remember asking the consultant, why ? .  I had assumed incorrectly that it was a tumour (ie lump) that grew larger over time.   My brothers was unifocal. 

Hope this helps a little

Regards

Gordon

 

 

Edited by member 20 Jul 2019 at 00:51  | Reason: Not specified

User
Posted 20 Jul 2019 at 10:18
What was rare about the diagnosis?

Gordon, you are correct, the research suggests that cycling and orgasm can falsely raise the PSA by about 10% but only for a very short time.

There was a really interesting research data set that showed professional cyclists often have a higher than normal baseline PSA but are at no increased risk of getting PCa. It led to NHS guidance to all urologists that intensive cycling should be taken into account when deciding whether to offer biopsy / MRI, to try to reduce unnecessary testing.

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

User
Posted 20 Jul 2019 at 11:21

Hi Lyn

I suppose nothing rare about diagnosis really, just thought it might not be common to be diagnosed with my circumstances.

Bear with me its all new to me!

Your ref to professional cyclists and psa is interesting, I have asked the question all the way through consultations etc. about cycling and links to Pca, most will say there is no conclusive proof, and its better to to stay fit and healthy than worry about it.

Thanks for your input

User
Posted 22 Jul 2019 at 18:57

Hi Rob, thanks for your reply 

new to all this so bear with me, and yes a bit daunting.

In answer to your questions (I don't really understand some of the abbvs. terminology yet but no prob)

Blood in semen was a one off yes, (apart from biopsies which have been like a blood bath).

As regards parents, father wasn't checked until he was having fairly serious problems, Grandfather died from it.

as regards rare I see what you mean, I worded it wrongly -i was just meaning unusual to have no raise in psa, but maybe its quite common.  I never documented my readings as I never though it to be relevant at the time, but I can say that it has always been between 1 and 1.6. 

lump (chronic inflammation) is left peripheral if that makes any sense.

I have opted for AS at the moment, but only as a temporary measure until I decide which way to go - I don't think I want 'a cancer' no matter how insignificant and harmless living inside me.

Specialist nurse has referred me for discussion with surgeon to discuss robotic surgery, and oncologist to discuss RT. and has re-checked up on my Mri scan, and biopsies at the team meeting. 

At this point i will be gathering as much info as I can so I can decide which way is best to go.

thanks for your input and hope you are ok.

 

 

User
Posted 22 Jul 2019 at 20:52

I see what you mean, it is true that when you read on here of PSA tests ranging from 3 to 13,000 a result of 1.6 seems very low. However, one positive core out of 30, and G6 at that, is a very tiny cluster of cells so it may be more fluke than anything else that you have been diagnosed. The specialists may advise you that surgery or external RT with HT is akin to taking a sledgehammer to a nut (no pun intended) - if you are intent on treatment, perhaps also ask about brachytherapy and laser treatment.

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

User
Posted 24 Jul 2019 at 10:33

Been reading your posts Lyn, you seem very well informed, and all your replies are very helpful.

Thanks for all your work! 

User
Posted 24 Jul 2019 at 23:25

hi Robin 

Reading this in more detail, definitely don't rush.. 

Any treatments have life changing side effects . I agree with Lyn consider / check out full range of options. 

See 'Claret' member / profile on here.  other option .. not just surgery or RT. Ask more questions of MDT.

PSA change is usually a good indicator of what could be changing..  ie 6 monthly PSA tests, Active Surveillance.  

That's basically all I did.. See profile. As my GP was quite neutral about my tests, ie over years it was me pushing and asking.

 

 

 

 

User
Posted 25 Jul 2019 at 11:57

Thanks for your reply Rob,

I'm not rushing, at the moment am just gathering info to weigh up the options.

1st meeting on Monday to discuss with surgeon, then a further with onco. 

I don't even have any clear details of exact location / size shape etc. Yet, so all to be considered. What I do know is that I have something there that wasn't there 12 months previously so in that respect things moved fairly quick which may or may not be significant. 

I will be asking questions about everything that is available, and will keep my options open. 

I find it ironic that I'm willing to risk my neck on a race bike, at 60 mph on a descent, but am not that great on risking a tiny bit of something growing inside me! We will see... 

On a side note, template biopsy, has anyone had (apart from usual side effects) stomach ache, or stomach a bit unsettled? I have a feeling it could be anti bios as they don't always agree with me. 

Thanks again. 

 

 
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