Ever Decreasing Circles part three

I am so sorry that , in line with your own medical history, this research has potentially shown something which I suspect you have always considered a probability. I know you are a wonderful person who never seems to have any bitternees or angst about the things that have happened in your life. Indeed on finding this the first thing you do is share it so anyone who knows anyone that has had testicular cancer can also make them aware.

I rather think that there will be more and more evidence of other genetic or chemical links from one cancer to another and more manifestations of a new primary cancer being related but not the same as the first. Although that is a bit frightening it could also be seen as a warning sign for prevention as you so rightly point out.

I know you will pass this off as "there but for" but I still want to say that I feel for you right now my friend.

xx

Mo

Paul, I think that a link between the two seems likely now but how direct might that be? Certainly, our understanding of hormonal cancers has come on significantly in 32 years and what is known now could not have been imagined then (I just had that conversation with my children this evening about FaceTime - when I was young, tv portrayals of people using hand held communications where you could see the caller's face were reserved for Doctor Who or sci-fi films).

It strikes me that a man treated for testicular cancer must have a more consistent testosterone level due to medication than others whose T rises with maturity and then drops with age - could this increase the aggressiveness of what would otherwise be a pussy cat? In my mind, yes this must be a possibility. My guess is that if a young man is offered testosterone to enable him to be 'normal' but with the warning that this may increase his risk of another cancer many years in the future, that young man may conclude it is a risk worth taking. You came to supplementary T late on and maybe would have taken a different view if you had known.

Edited by member 26 Feb 2015 at 00:37  | Reason: Not specified

Really interesting post Paul, how many times do we hear that some  who has been cured of cancer many years ago and then it pops up some where else. The old adage that lightening doesn't strike twice certainly seems to be inaccurate where cancer is concerned. I firmly believe that hormones have a much bigger part to play in lots of different types of cancer, who knows maybe all cancers.

I have just read an interesting article on neutering male and female dogs at an early age. (I was researching this for a totally different reason) and one of the findings was that early removal of either testes or fallopian tubes and there by stopping production of Testosterone and Estrogene had a detrimental affect on bone growth platletes .  Here is the interesting bit , I would have assumed that by stopping the relevant hormones the bone growth would also stop but this was found not to be the case and these hormones in fact play a very important part in telling the body to stop growing after puberty. The outcome was that early neutering (reducing hormone levels to early ) results in bone growth growing out of control and multiplying without a stop sign and that is exactly what cancer does. There was also a higher incidence in later life  of cancers in dogs that had been neutered before they had reached sexual maturity.

So I know this is a bit out there but when you think that when boys are born there testicles are swollen due to an influx of female hormones from mum and girls are born with there ovary's complete with all of there eggs and we are all only here for one thing to reproduce then hormones are so important and yet so fragile. How easily that can upset the balance of our bodies.

Wow I said all of that without a smiley face.

BFN

Julie X

I am really sorry you have had/got another UTI. You must be quite fed up having thought you had got to the root of the problem and managing it so well for 6 months or so. Sounds like you have this one under control.

As to your test results I do not think it would skew the PSA/ALP figures in themself but you will possibly get some marginally errant readings in what I call the Ium values, potassium, calcium etc. Maybe CRP/ESR if they measure those for inflammation and raised protein levels.

I think the angst all you Men on here go through pre test and during the time that you wait for those results has an impact on your general well being.

I will be thinking of you as I always do and hoping that you get everything back to your version of normal asap.

xx

Mo

Bri is right a UTI can cause a slightly elevated PSA, The amount would be significant for anyone in the "Cure" camp but for someone with advanced disease ( and I was assured of this by Mick's medics) it not likely to be that significant.

I guess it is my bad for making a rather generic statement.

If you are at all concerned about the UTI having an impact but if you do not want to delay your routine consult, then maybe you could mention this and ask if you could have a PSA retest once you are clear of infection again. With the number and frequency of UTIs you have had since diagnosis I would think this has probably coincided with a PSA test before.

Sorry if I got this wrong but I was just trying to cause you a bit less angst when I know you are even busier than normal and dealing with other issues as well.

xx

Mo

Thanks for all the good wishes. I know it will recede but will be interesting to see if my uro, a new one, maintains the prophylactic dose.

I have been told in the past that PSA can be affected by an infection and by anti biotics but I was only taking the prophylactic dose on Friday when I had the blood test so I am hoping the impact will not be great.

Paul, I guess in this circumstance if there was a rise you would not know if it was the infection or the prophylactic dose of anti biotics or a combination of factors that caused it. In my (not necessarily logical) thinking if there is a rise that concerns you only a retest on no anti biotics and clear of infection would give you a truer figure and even then that could only be used as a comparison against the last known unaffected test result.

I am so sorry I have been rubbish at putting over what I thought in your personal circumstances was a valid observation.

All the very best for your consult I will be thinking of you as always

xx

Mo

Thanks guys I do appreciate your input and I'll let you know the outcome soon!

I wanted to say something about tests which expresses a different position than expressed by a lot of men on here. It may be helpful for some. I make a complete disconnect between the blood test itself and the results. I do not feel any anxiety about the next results until the day of the appointment and indeed usually when I am in the waiting room my mind begins to ask the What if questions. I have been thinking about this and whether I could articulate why this is so for me in the hope it may help those whose anxiety appears to be extremely high prior to their results.

Firstly for me I am not sure I want my PSA in isolation. What do I do with the info until I can discuss and share it with my consultant. I can speculate and if I come on here we can all speculate but this would create rather than reduce anxiety. So I see the test as no more anxiety provoking than making an appointment.

Secondly, I have to keep living my life and stay focussed on that and I try and limit speculation and my future to my consultation. I do think about it but it's not my waking thought, my life and what I need to do today is much more upfront.

Thirdly I learnt a technique when I was a young probation officer which enables me to create some distance and perspective. I did this because as a 25 year old entering such a challenging job I was taking it home with me, worrying through the evening and night and rushing to work to check some disaster had not occurred. I realised that I could not function in this way and with my supervisor I learnt to put it to one side until I could next do anything about it. So I worried whilst with a client and by the time I was home I had parked it. (I think that was one reason I got into soaps as I found them relaxing, easing the day away, music or a bath or even a drink might do that for others) and this was reaffirmed many years later when I became a single parent and was multi tasking frantically. I had so many pressures on me I needed to find a bubble which was just me and shut the world out for a while.

I know we are all different and I can fully understand the sense of anxiety which precedes a new consultation and I do feel it acutely on the day. But I also get some distance from it if I can.

Hope these thoughts might hit a button for some of you out there.

I was going to give blood for my PSA test before we came away, in fact I've had two lots of blood taken a week ago and on both occasions the GP first and then the nurse asked if I wanted the PSA adding. I refused.

The reason was two fold. I usually have the PSA tested at Sheffield but more importantly I knew I wouldn't be able to wait for my results until my appt on the 24th. I've not really given them a 2nd thought...but I know I will get nervous as I wait to see the oncologist on the 24th. So I do fully understand your point of view Paul. You will have seen my recent photos that show a man who isn't worrying at the moment. However, if my PSA is ok it will feel like I have got another 6 months of life.

By the way my other bloods were all normal apart from glucose being borderline at 6.3..but I hadn't fasted for that

Bri

Edited by member 03 Mar 2015 at 15:23  | Reason: Not specified

Bri, what a lovely quote. Actually in terms of PCa you will have far more than six months even with a bad result. But I do not want to remove the increasingly drunken looking smile on Facebook it's your birthday, enjoy without reservation.

How wonderful to see Paul , Brian and Trevor living with their Cancer in such a positive and pragmatic manner. It is so true life is for living. Some times I think it takes a threat of some kind to mobilise us into doing just this. I for one have wasted too much time worrying about things that may never happen without savouring the present . Cheers
Georgina from Oz

Edited by member 04 Mar 2015 at 01:48  | Reason: Not specified

Don't know what you mean Roy ;-)

Hope you are doing well

Bri

I want to share a theory with you all to see if it has any merit. As regular readers will know I have suffered from urine retention discovered in early 2012 only a few months after diagnosis whilst I was very ill with numerous urinary tract infections. When I was well again and had got rid of my catheter I had to train myself to self Catheterise (ISC) as I was retaining over 500 mls and at one time was having to do ISC four times a day. Over a period of six to eight months the amount retained reduced and in the end I was drawing off consistently less than 100 mls and with my uro I ceased to do ISC. 15 months later I realised that retention had returned and have now been doing ISC for 8/10 months. At first it was over 500 mls but has steadily reduced and in the last few weeks it has gone down to less than 200. I continue to ISC morning and night for now.

Now my theory is this. I saw a stylised picture of a prostate recently which showed normal prostate than a cancerous prostate which was swollen and squeezing the urethra. Now given those undertaking RT start with HT to reduce the size of the prostate, though I had bone met spread and therefore no RP or RT, I started HT. if one impact of the HT was a reduction in prostate size this would have coincided with that period when I reduced ISC from four times a day to ceasing altogether. Gradually over 2014 my PSA went up, probably indicating activity and maybe my prostate swelled again thus causing increased retention, hence my second bout of ISC. Now I have been on casodex since Jan and it appears for now to be working my retention rate is lowering, I am sleeping through the night with no nocturnal accidents.

My question - is this relationship a likely explanation or mere coincidence? Also could I predict when the casodex stops working if my retention starts to increase again. Or am I just talking nonsense.

Answers on a postcard please!

Thanks for feedback. I am interested because I have never had a conversation with my uro which has put the two issues together. At this rate of I mprovement I might even be able to have a drink at Mill in the Soar without retreating constantly to the loo!

Edited by member 14 Apr 2015 at 22:25  | Reason: Not specified

If you sit reasonably close to the toilets, we could just fix you up with a long piece of tubing and a funnel? 

I've had a difficult week or so with a pain in my right leg that has caused me some distress. Though I did not think it was connected to any bone met growth you never know. I had a busy week and have limped around London twice. It wasn't until today I could get to the GP. I got my doctor's appointment but with a locum. She was helpful but did not really know what the problem was. After consulting with a colleague she thought that my leg pain might be a DVT (blood clot), apparently more likely as a cancer sufferer so I learnt that today. So I,m off to the hospital. NHS swings into action brilliantly when there is a life threatening problem. Six hours later, yes it took a while for ultra sound scans etc but I am cleared of a DVT so no major problem. Yet ironically I am not yet any closer to resolving what is wrong, though have the pain relief better organised. I think it is a muscular problem and hope it will continue to improve, if not back to the doctors. I will ask my GP to send a note to my uro consultant suggesting a bone scan just to be sure. They are reluctant to do them when the PSA is falling but I think it would be good to confirm (or not) things have not spread further.

Strange though I feel better, even though I still have the same problem. Sat in the Acute Medical Unit today surrounded by potential stroke victims, heart attacks etc etc I felt much better off. (I was surprised to see no one from the forum given our recent spate of heart problems!) I have felt really down this week and still have to resolve it all but it's the weekend, so I hope things will improve. Strange day indeed.