Earlier this year I was getting tired and annoyed at having to get up 2 or 3 times a night to pee. I blamed it on too many cups of tea before bedtime. Anyway, a few days before my 54th birthday at the end of March I decided to see my GP about the problem. On 24th March a blood test revealed a PSA level of 182.0 ng/ml.
From that day things moved on at such a speed it's almost a blur to me now.
April 12th: Urologist did a DRE and said he was 99% certain I had PCa. Ordered me in for a cystoscopy.
April 14th: Biopsy. I should have been able to go home after the anaesthetic wore off, but every damn thing went wrong. The blood just wouldn't stop clotting. I ended up with a catheter forced into me and remained in hospital 7 days even ending up having to have morphine and an emergency procedure to clear my bladder of clots. I had told staff constantly that the catheter wasn't working properly. They wouldn't listen. That was the first and last time I ever trust anybody in the medical profession. I now question every single aspect of my treatment and demand full involvement. This attitude has since paid off.
April 16th: I have a T4 and Gleason 3 + 3. The Gleason score is clouded in mystery. I had to demand it time and time again, but heard just flimsy excuses. Therefore I suspect it may be higher.
April 18th: Bone scan. Clear.
April 20th: X-Rays Pelvic area and skull. OK.
April 26th: Started hormone therapy: 6 x 50mg Cyproterone tablets daily
May 9th: I discovered the work of Prof Jane Plant regarding breast/prostate cancers and diet.
May12th: PSA level : 48.7 ng/ml The Cyproterone was stopped and I had my first Zoladex implant (12 weeks dose)
May 15th: I started the Jane Plant diet 100%. No more dairy food etc etc.
May 23rd: First MRI Scan. Showed spread to left seminal vesicle.
July 14th: My wife and I were invited to the home of Jane Plant and her husband. She is a truly amazing, inspirational woman, and for such an eminent scientist, a lovely down to earth person.
July 21st: PSA Level: 3.3 ng/ml
I spent the best part of July pestering my urologist and the specialist nurse to get me an appointment with an oncologist. There seemed to be a marked reluctance to do this and I discovered that the urologist had intended to just keep me on hormones and see me every 6 months. I wasn't going to accept this so I pushed like hell and finally got my wish. It really does pay to be very firm....but very (reluctantly) polite.
Aug 4th: 2nd Zoladex Implant
Aug 9th: Seconod MRI Scan revealed reduction in size of cancerous areas.
Aug 22nd: Finally got to see an oncologist, 19 weeks after diagnosis. He dismissed my theory that the tumour should really be a T3b by informing me that there was pelvic floor involvement.....first time this had ever been mentioned... most definitely T4 and that I must have Radiotherapy.
Sept 21st: Started RT. 37 treatments totalling 74Gy. Excellent machine: Siemens Primaton Linear Accelerator combined with CT scanner. Very accurate 3D-CRT , known as IGRT...Image Guided Radiotherapy.
Sept 27th: Saw my Oncologist again. He expressed amazement that I was still able to have sex, though not too frequently, after so many months on Zoladex. He sent me for another blood test. PSA: 2.01 ng/ml, Testosterone: 1.4. All is as it should be! He insists I stay on the Zoladex for a further 30 months. He also informed me that it is the right side of my pelvic wall which is cancerous.
Oct 1st : After only eight RT treatments my urine flow is very restricted.
Oct 9th: I started one capsule of Flomax a day to relax muscles around the urethra and ease the restriction caused my swelling after RT.
Oct 13th: PSA : 0.9 ng/ml
Oct 21st: Urine flow even more restricted. Now given 2 Flomax a day.
Oct 27th: Third Zoladex Implant
Nov 8th: Saw Oncologist and asked what happens next? He again insisted I must stay on Zoladex. He told me no scans were planned for me now and that 3 monthly PSA tests would be the only reliable markers of my PCa.
Nov 11th: Armistice Day...and it's ceasefire day for me too as I have the final RT session. I have to say the RT has gone remarkably smoothly. Very few side-effects: The increased frequency and urgency to pee, and a few days where I was extremely tired. No skin irritations or bowel problems whatsoever. I`m quite sure my diet helped me through this.
Dec 11th. It's a month since my last RT treatment, and the urination problems are fast clearing. From needing to take 2 Flomax tablets a day within a week or so of starting the RT I'm now able to go almost 48hrs before I feel the need to take just one tablet to ease the flow.
After RT ended, I'll have to admit to some days of depression. I felt really low for a while, as though the whole thing had finished in an anti-climax. However, I'm told that this is quite normal. I do have a few down-days now and again, but the optimistic days outnumber them.
I'll have a PSA test done in early January, then see the oncologist for the first time post-RT, and to round off a busy few days I'll be having the 4th Zoladex injection since my diagnosis in April this year.
Jan 5th 2006 I had my dreaded 3-monthly PSA test. Today (Jan 6th) my very friendly and super efficient specialist nurse emailed me with the result. It's down to 0.2 ng/ml.
I really didn't expect this result because I thought all the radiation might have given a distorted reading. PSA was 2.1 ng/ml at the start of RT in September and 0.9 ng/ml half way through my 37 RT sessions on 13th Oct 05.
When I think back to my very first result in March 05........It was 182 ng/ml, and I didn't have a clue what PSA meant or how serious a T4 was. Geez.........dont you learn a lot very fast when you know you just HAVE to do it! lol
On Monday 9th Jan I will see my oncologist for the first time since my RT ended, and the following week I have to go and get that 'orrible Implant injected. That will be my 4th 12-weekly Zoladex injection since diagnosis.
Doesn't time fly when you're having....ermmm....fun?? lol.
At the latest appointment with my oncologist on Jan 9th this year, I quizzed him about my original Gleason score, which I've always thought was shrouded in mystery. He agreed with me that it should definitely have been Gleason 7 at the very least. So, it seems my lack of faith in the urologist was well founded. Thank God I no longer have to deal with the man.
At my latest appointment with the oncologist he said he was very happy with the way I'd gotten through Radiotherapy, and the fact that my PSA was now down to 0.20 ng/ml. He said that if I can provide stable PSA levels over the next year or so, while on Zoladex, I should be able to stop the treatment and perhaps go intermittent when my full three years is up.
Ah well.............only 26 months to go...and at least the "little blue pills" (Viagra) continue to work well enough....not fantastically, but good enough I suppose.
On 30th March I had my 3-monthy PSA test, in advance of the next Zoladex implant on 13th April.
I'm delighted to report that it's again 0.2 ng/ml, as I come up to one year since diagnosis on 12th April 2005 with a PSA of 182 ng/ml.
For the last 2 months though, I've been feeling very cold and tired, and it seems this is a side-effect of the Zoladex. I have none of the more common side effects such as hot flashes etc.
I'm still able to have intercourse with the help of the little blue pills, but it's been about 6 months since I was able to have an orgasm.
I appear to have survived the 37 RT treatments with no bad effects whatsoever, for which I'm truly grateful.
Today (July 6) I had my 6th three-monthly zoladex injection. Following my latest blood test, I'm pleased to report my PSA is still stable at 0.2, and I'm told my blood has never been as healthy for years. I'm sure I owe this to the Jane Plant diet. I feel fit and healthy and the coldness and tiredness has passed. Prof Plant published an updated version of "Your Life In Your Hands" in June of this year and I was honoured to be included in the book as a case study. She also has a new website dedicated to cancer patients, and this comes fully online on 1st August. The site is called Cancer Support International.
PSA now < 0.1 ng/ml. My local hospital lab only works to one decimal place, and I was told that this latest level is too small for them to quantify. (I did have another test at my main hopital 6 weeks ago, and the result there was 0.12 ng/ml)
At last! I never thought I'd get down to this level. It has taken 17 months to get from 182 ng/ml to here, and I feel today is an important milestone in my journey. I am still adhering strictly to the Jane Plant diet, absolutely NO dairy or processed foods at all, and I continue to have 3-monthly Zoladex injections. However, I will have been on these jabs for 2 years come April 2007, and I'm going to try and persuade my oncologist that I should go intermittent with the treatment from then. I will see him in October and I'll report my progress then.
I'm willing all of you to get encouraging results too. Don't forget, I am always willing to answer any emails.
December 7th 2006: Latest PSA: still <0.1 However, testosterone has now fallen to its lowest ever level: 0.6 It was around 1.4 back in August. I have now come to the conclusion that this depletion of testosterone has been the cause of the extreme fatigue I have suffered since October. From June thru September I felt so well and full of energy, even starting to work out 3 times a week at a gym. Then I began to feel a tiredness I have never before experienced. I felt as though my body was being totally drained of every ounce of energy and vitality. In the past I had suffered a few tired days before and after each 3- monthly zoladex injection, but this was different. I was worsening day by day.
December 12th 2006. Today I saw my oncologist and told him bluntly that I wanted my testosterone raised somehow. I was hoping he would agree to me stopping Zoladex in April 2007 after 24 months of it, but he warned strongly against this in view of my high T4 cancer staging. However, we reached a compromise. If my PSA can stay at <0.1 till Aug 07 (12 months at that level)) then I can a chance and stop treatment.
December 20th 2006. My oncologist rang me at home. He said he's been reconsidering my case, and agreed that I was suffering badly because of the low testosterone. Apparently he is surprised at how well I have done in the last 20 months and has suggested I now cease Zoladex and begin Casodex 150, one tablet a day.
Apparently this doesn't destroy the testosterone, but allows it to access only the brain receptors, not other parts of the body. He reckons I should soon regain my energy, and even my libido!! WOW!
I am now awaiting a call from the hospital where I was very soon due to have another Zoladex injection. Hopefully the new regime has been arranged.
I will keep you posted. I must admit, I could not have stood this exhaustion much longer. I just couldn't funtion normally at all, every day started with an energy level of zero, and it was soul destroying. I am truly praying that I may now be on the road home, fingers crossed!
Feb 1st 2007. After 6 weeks on Casodex 150 alone, PSA level remains stable at <0.1. but Testosterone has at last risen: Now 0.9. It's now 20 weeks since the last zoladex injection (12 weekly) and I'm only now beginning to feel some energy returning. I feel sure that stopping Zoladex was right for me. The tiredness was just too much to cope with after 20 months.
It seems to me that it's only guys who have had the combination of radical radiotherapy PLUS the hormone injections who experience such extreme fatigue. I've known others who have been on Zoladex alone for 5 years and not experienced this type of exhaustion. Just my own theory!! Gotta blame somebody or something for almost 4 months as a Zombie!
MARCH 1st 2007 Latest Blood Test: PSA remains at <0.1 Testosterone 0.8!
Just got results again. PSA is stable at <0.1 for the 8th consecutive month. I am aiming for Christmas this year to be able to tell my onco that I wish to stop all treatment. (Keeping everything crossed of course). That would be quite some result after the T4 with such a poor prognosis!
May 29th 2007 Results: PSA < 0.1 Testosterone now climbing: 1.9.
July 26th 2007 Results: PSA < 0.1 Testosterone 7.1 nmol/L.
August 9th 2007: Saw an endocrinologist about my tiredness which has been worsening. He diagnosed extreme exhaustion, probably due to the effects of testosterone depriviation for so long. Seven specific blood tests ordered, mainly hormonal. Have to wait over 3 weeks for results.
August 23rd 2007: PSA < 0.1 Testosterone now up to 10.4 nmol/l.
Sept 18th 2007: Big BIG news...Both delighted and terrified now!.
My oncologist agreed to see me three months earlier than planned as I wanted to ask if he would agree that I could stop or maybe reduce my current treatment of Casodex 150. I'd been on it for 38 weeks. Also, for 13 consecutive months my PSA had been stable at < 0.1
To my amazement there was absolutely no argument from him. From today I am off all treatment!! I will obviously have regular PSA tests and remain vigilant, but maybe, JUST MAYBE....the beast is beaten. It's incredible that 30 months ago I was told I had maybe 2 or 3 yrs left to live.
In my heart I believe that I was just plain stubborn (and lucky) that I decided to fight the urologist's treatment plan, and that the combination of HT, 37 Radiotherapy treatments PLUS keeping strictly to Prof Jane Plant's suggested diet all worked together beautifully.
I am too sensible to say I'm cured, as I know the beast could return with a vengeance, but for now I can feel at rest for a while.
20th Sept 2007: Another Blood test: PSA < 0.1 for the 14th month. Testosterone up to an amazing 15.2 UMOL/L. This was the result of changing from Zoladex(Lupron) to Casodex 150 in December 2006 when my lowest ever testosterone count of 0.3 had me on me knees with complete exhaustion.
Sept 20th 2007 Sept 20th 2007 PSA <0.1 Testosterone 15.2nmol/l
Oct 15th 2007 (4 weeks off meds) PSA 0.18 Testosterone 20.00mnol/l
Nov 8th 2007 (8 weeks drug-free) PSA 0.3 Testosterone 16.4nmol/l
Dec 6th 2007 PSA now 0.4ug/l Testosterone 19.6nmol/l Still no PSA "surge" and I'm feeling so relieved about that after 12 weeks without any form of treatment.
For some reason, this 3-month marker was a real milestone for me. I worried more about that result than all my previous ones.
Jan 4th 2008. PSA now 0.47 ng/ml after 16 weeks off all medication. It's rising at a rate of 0.1 per month, something which doesn't worry me. I just wonder how long it will take to reach that fabled plateau...and just what that plateau figure actually is for me.
Jan 30th 2008 PSA. 0.7 ng/ml....a slightly higher rise this month. Testosterone 25.3mm/L....Never seen this as high!(and never imagined I could get back to a normal level after all the ADT)
Feb 20th 2008 PSA 0.7 Testosterone 22.6 nmol
March 25th 2008 PSA 1.52 Oh? Doubled?? Oncologist expresses concern, but I reckon it's OK...I DO have a prostate, after all. Testosterone 20.7 nmol It is now exactly half a year, 26 weeks since I ceased all meds.
April 22nd 2008 PSA 1.1 (Phew!) Testosterone 18.0 nmol (down again this month).
May 9th PSA 1.1 Testosterone 20.7 nmol
June 3rd PSA 0.9 Testosterone 17.3 nmol
July 1st PSA 1.2 Testosterone 22.3 nmol
(41 weeks off all meds now)
July 29th 2008 PSA 1.0 Testosterone 18.6 nmol
On Sept 16th I saw my oncologist, and it marked one full year with no meds. Results?....PSA 0.94 Testosterone 22.9. ?... the onco is astounded!!! He can't believe it's actually down on previous appointments.
Recent blood tests:
Oct 14 PSA 1.0 Testosterone 18.9
Nov 25 PSA 0.9 Testosterone 20.2
Had a troublesome few months but continue to have excellent PCa test results.
Persistent eowel problems have been a real 'pain in the ass' but all tests showed nothing sinister. I had a colonoscopy done in late January, 3 polyps were removed and it was found I had a prolapse. I see the gastroenterologist in a few weeks time to discuss what's to be done - if anything.
Here are the last few PSA results. I'll keep the figures just to PSA, as testosterone has remained consistent - at normal and healthy levels - since I stopped hormone therapy in Sept 2007.
Jan 6 PSA 1.2
Jan 14 PSA 1.36
Feb 24 PSA 1.1
Had a good chat with gastroenterologist last week and the news is good but annoying.
Polyps removed were benign, no inflammatory bowel illness or worse, just that damn prolapse, but even that doesn't require an op at this stage. Trouble is, she is convinced I have IBS (Irritable Bowel Syndrome), probably brought on by the radiation. I think she may be right, but the annoying part about it is that there is no 'cure' and I will have to restrict my diet even more.
I'd noticed that steering clear of certain fruit and veg gave me better days. At the moment I'm having 4 good days and 3 bad each week, a definite improvement.
Geeez, I'm gonna be so thin I'll be disappearing soon, lol.
April 6th PSA 1.3.
Monday 18th May 2009: PSA 1.26 Another good result, and it's now one year and 8 months since I ended treatment.
The only downside had been this past year of bowel troubles - but I'm very hopeful that I'm near to solving that problem after experimenting with different types of pills and tinkering with my diet a little.
As the old saying goes...'Watch this space'..
1st October 2009 Recent PSA test results:
June 29 PSA 1.4 Testosterone 23.4
July 6 PSA 1.3 Testosterone 21.6
Aug 18 PSA 1.7 Testosterone 22.1
Sept 15 PSA 2.35
On September 18th I celebrated two years since the end of treatment. This past year has seen me hit unexpected troubles - bowel problems and a spiral down into depression which lasted much longer than I'd have wished. The GOOD news is, I am finally over those problems. Frankly, I was beginning to despair, but at long last I am back to my 'normal' crazy self : )~
After a lot of trial and error, the bowel problems have gone simply by taking one Loperamide capsule every other night. Amazing! I could have avoided all those darn scans, 'scopes' and blood tests.
As for the depression, I took Venlafaxine (Effexor) for a short time, but decided to stop quickly when I saw my PSA had risen. I think (personal opinion) that those meds caused BPH (Benign Prostate Hyperplasia) type symptoms. As soon as I stopped, those symptoms eased. To be on the safe side I am having PSA re-tested on 13th October. I'm confident it will have stabilised.
At least those pills kick-started me back into action, and I am very grateful to my oncologist who referred me to an excellent clinical psychologist who deals mainly with cancer patients. My meetings with her have helped greatly, and I hope my mood will stay as stable as my PSA. I don't wish for much, do I? lol
I hope this update may help any one of you who has experienced such an unexpected downward turn when everything seems to be going so well in your life. It happens, and you CAN get through it. Hard as it may be at the time, you just have to accept that it's part and parcel of our battle, and just one more skirmish to get through safely.
Later: 13th October. After seeing my PSA rise yet again last month, this time to 2.35, I had a re-test done today. I am relieved to be able to report that it has GONE DOWN to 1.8.
I am now certain that taking antidepressant tablets caused the two unexpected rises. I stopped them immediately on seeing the highest PSA result in years and luckily for me, my figures are now heading back to normal.
The oncologist is have me re-tested again in four weeks time, and I'm hoping to see a return to my 'normal' PSA of around 1.3, a level which seemed to be maintained throughout the 2 years since I ended ADT.
I'm no expert, but I would like to warn everyone to be very careful before taking any anti-depressants such as Venlafaxine (Effexor).
Nov 10th 2009 PSA 2.74 A rise I didn't expect.
Dec 8th 2009 PSA 2.2 Testosterone 23.5
Jan 26th 2010 PSA 3.29 Testosterone 21.5
My oncologist has said that although my PSA is also rising, he'd wait till it reached 10 then send me for CT and MRI scans before considering what steps to take next. I have a urology review on March 4th so will have another PSA test done two days before that.
March 2nd 2010. PSA down again. Now 3.0
March 24th 2010: Today marks FIVE years since that first PSA test revealed a score of 182. That was just three days before my 54th birthday. The rest, as they say, is history. I never thought I'd be here today typing this update.
I have to consider myself very lucky that so far I seem to have made the right choices, and have had some accurate and appropriate hospital treatment, I must also stress that the most important factor in all of this has been the fact that I found YANA so quickly in those early dark days, and that the internet allowed me invaluable contact with fellow sufferers around the world. We have all travelled the path together, helping and supporting each other through some very hard times and some surprisingly good times. Thank you everyone, and in particular, thank you Terry for this unique, priceless site.
I have now had no cancer meds in over two and a half years, and have stayed faithful to the Jane Plant diet since a month after my biopsy and MRI scans confirmed a T4 tumour in April 2005
God Bless You All, But let's never forget those friends who have now sadly left us. The battle goes on, day by day. We must stay ever vigilant.
I've seen a gradual rise in PSA over the past few months, but as yet I'm not worried, neither is my oncologist. After all,I'm coming up to three years without any treatment, I have an intact prostate gland, my testosterone levels are always high, and for a guy of my age a PSA of 5.87 isn't unusual.I feel healthy and am symptomless.
Latest results have been:
March 29th PSA 3.6
April 26th PSA 4.8
May 21st PSA 5.6
June 1st PSA 5.87
The plan is still for me to have MRI, CT and bone scans IF PSA reaches 10. Then I will be 're-staged'. I have only just discovered what that means. At diagnosis I was T4N0M0, but now, five years later, and after all the RT and HT in the first few years, the oncologist doesn't know what my staging is, so I'm classed as TXNXMX. Only scans can give us all a clearer idea of what is happening.
For all I know, my staging is far better than it ever was. Fingers crossed.
Later: June 15th 2010: [George is not happy!! And who could blame him. This part of his story shows clearly why oncologists, NOT urologists, should be the 'lead specialist' in deciding on treatment options and why every man should consult an oncologist - as women do for breast cancer] I was called in to see my urologist, a guy I had never seen in five years. This was the same pessimistic, unhelpful consultant who 'wrote me off' in 2005, and even said of my diet change "It's a little too late to help you George...but if it makes you feel better..."
I'd better explain that I am monitored by two hospitals. The first is where the urologist did my biopsy in April 2005 after my first ever PSA test on 24th March of that year came back at 182.
The second (and best) is a specialist cancer treatment centre where I met the oncologist who gave me hope and put me in for 37 RT treatments alongside my hormone therapy. My urologist's treatment plan would have been Zoladex (Lupron) injections only, and he said at the time that I had 2 or 3 'decent' years left. The way the urologist spoke to me that day was diabolical. He offered no hope at all. Frankly, he did me a favour, because it made me so angry that I vowed to make him eat his words. But, I wonder how many men have been through the same experience with him, and left the hospital feeling totally defeated? it wouldn't surprise me if all the fight was knocked out of them. It makes my blood boil thinking about it.
For the last five years, the only reason I have had to visit the urology department has been for 3-monthly reviews by the same specialist nurse who saw me through the HT. She arranges my PSA test before each visit, and we discuss the results, and my general health, at each review. After she saw a rise in my latest test, she said that the urologist would probably want to see me about 're-staging'. As I explained in my update, my oncologist had mentioned this to me at our meeting on 8th June. But he said we would wait till my PSA reached 10.
My urology nurse was right, and I received a letter to see the Uro. I thought 'Why not?'....I'd probably be offered scans, and it would put my mind at rest having a scan for the first time since my very early days after diagnosis five years ago. If there was something amiss, then I'd have a great opportunity to have it treated early. I was wrong.
First of all he said of my PSA rise.."Well, we did say five years ago that you had slim to nil chance of a cure". No mention at all about how I had confounded his prediction over those years. Then he said he could offer me Zoladex injections or Casodex again, but said I may want to choose quality of life over such tiring treatment. By this time, smoke must have been billowing from my ears!! I simply asked 'how on earth can you sit there and say that?'. Nobody has seen a scan of my body in five years. How the hell would he know that there was any return of aggressive cancer? My PSA is only 5.87 for heaven's sake. Furthermore, he dismissed my suggestion that I have PSA tested every four weeks to keep on top of any rise. According to him, a 3 monthly test is adequate.
I said goodbye to him there and then. I certainly won't ever see him again. In fact I would discharge myself from that urology department if it wasn't for the fact that my nurses there are worth their weight in gold. I have been given any test I asked for in times when I've had worries. The uro doesn't even realise that I've had four weekly PSA tests there at times of change, such as when I ended all treatment, or when I've seen an unexpected rise.
To end, I have to warn any newcomers here, please don't let a urologist take charge of your treatment. Demand to see an oncologist. When I first met mine, everything changed for the better. He has been unstintingly supportive, encouraging, and has always filled me with hope. My urologist? The only thing that man knows how to dispense is despair. If I had taken his word as infallible back in April 2005, I would not be here today passing on this message.
18th September 2010 It is now exactly three years since I've had any cancer treatment. I feel well and am more than happy to be still around.
The last five and a half years have been eventful - and a definite learning experience. This illness seems to have no pattern to it. Every prostate cancer is different and every single one of us responds in different ways to treatment. [The late Aubrey Pilgrim - he passed away from an unconnected brain tumour - always used to caution newcomers about what he called the Golden Rule of prostate cancer: There Are No Rules!] My own treatment had me tired out and feeling cold even in warm weather.
However, these three years following the treatment have been full of surprises, some welcome, some not. The best thing was finding I had made a full return to a normal sex life within a few weeks of ending hormone therapy in Sept 2007. The worst 2 things were probably connected:
1) In 2008 I had severe and persisitent bowel problems for over a year, which I eventually discovered was a late side effect of radiotherapy. Those problems were really ruining my days. I had a host of blood tests and a colonoscopy, and all was well, apart from a few polyps (removed during the procedure) and a weakness in blood vessels caused by RT. Happily, those problems are now gone, thanks to taking one loperamide capsule every other night. I only discovered that solution by trial and error.
2) From Nov 2008 till May 2010 I was in the grip of the worst depression I had ever experienced. I lost all energy and zest for life, and felt no emotion but despair and failure - because I couldn't seem to fight my way out of it. My oncologist was very supportive, and said that although most men are hit by that depression earlier in the illness, it's not uncommon for it to strike when treatment is over. Thank God that problem is now gone. And once again it was through trial and error that I found a medication to help me over it. I had tried every other avenue, but it was finally finding an antidepressant that suited me which resolved the problem. It seems we all react differently to various types of these pills. I would certainly advise, that if you hit that dark place, as I did, then please don't give up just because a particular pill isnt working for you. Try another, and another...till you find the one that's the ideal one for you.
Finally, as for my PSA levels: They remained at around 1.0 for the first 18 months after the end of treatment. For the next year they rose very slowly but surely to around the 3.0 mark In these past 6 months they have settled (I hope) and now come in at between 5.0 and 6.0 each month. I would love to think that I have finally reached that fabled 'plateau' - a normal PSA for a man of my age (60 next March). After all, I have an intact prostate, high testosterone, and have gone these past 3 years without treatment. Time will tell, but I DO intend to be around causing mischief for many more years to come.
One other thing....At diagnosis we had only 3 grandchildren, now we have 8. Would anybody like some of them? (Please!!).
Finally, I never tire of telling everybody I meet that YANA was the first site I ever found when I was in a state of shock and disbelief back in April 2005. Long may we all continue together here.
Very best wishes to you all, George
PS. A 2011 date for the diaries of any UK guys here. Saturday 25th June: Another get-together of PCa friends, again at The Mill On The Soar in Leicester. 60 of us met up last Saturday, many of us staying over for the weekend. It was good to be amongst so many fun (crazy) people.
Since my last update I've stayed well, physically and mentally, and it's now 3 years and 3 months since my treatment ended.
I've kept to the Jane Plant diet which I began soon after diagnosis and I still take the same supplements as I have done throughout the last 5 and a half years.
My PSA level has continued to rise this past year, but it's a very slow, shallow trend upwards. The plan remains the same. If PSA reaches 10 then I will have MRI, CT and bone scans before any further treatment is considered.
Latest blood test results have been as follows:
July 26th 2010 PSA 5.4 Testosterone 25.6
Aug 16th 2010 PSA 5.7 Testosterone 24.8
Sept 20th 2010 PSA 7.3 Not the result I was hoping for, just two days after my third full year since treatment ended. I'd been optimistic that it would stay between 5.0 and 6.0 for the foreseeable future.
Oct 4th 2010 PSA 6.79 Testosterone 20.3 Well, what do you know? A fall in PSA this time. This might give me another 3 or four months before the oncologist says 'Time for the scans'.
Nov 9th 2010: PSA 7.5 Testosterone 21.2 So, all in all, I'm happy with results so far. I'm not at all worried about the 7.5 figure, BUT...I continue to ensure I have a monthly PSA test done. I believe it's best to be 'on top' of things, ready to ask for immediate investigations should I see an alarming rise.
It's my own personal opinion, but I would certainly not risk waiting 3 months or more between tests. Too much could happen in that time, and I never forget how poor my initial prognosis was. I suppose VIGILANCE is the key word - we can never let our guard down.
I hope my story so far gives hope to anybody here who is newly diagnosed with an advanced tumor staging. And if your urologist or oncologist is an uncaring pessimist...dump him! Go for someone who actually does care about his patients, still has a keen interest in the many PCa treatments now available, and most importantly, someone who will fill you with hope and the confidence to fight this damn thing.
I had another bone scan on Friday 21st January 2011, and rang my lovely onco nurse for the result. She said the report states 'No good evidence of metastases', but there is some wear and tear damage to the shoulders and spine. I went for the CT scans on Mon 31st January 2011. I was pleased I had all these scans booked in advance, because my PSA finally went passed the 10 mark on Tuesday. 10.1 to be precise, and it was 9.3 three weeks previously, so I knew for sure it would hit the onco's 'magic number' before I was due to see him next.
That has gained me some valuable time. If all scans are clear, then I'm thinking about hanging on to see if my PSA stabilises over the next few tests before I return to any treatment. I suppose the onco will be very sceptical about that when I see him on the 8th February 2011...but then again, he always has been, but he's a great guy and admits he now thinks I made the right choice in the past, despite his doubts at the time.
This may be crazy, but I'm wondering if my PSA will find its 'norm' and settle at 12 - 15. I've now been off treatment for 4 years, 4 months.
Oh well, que sera.
Later: I've only just got back in the house an hour ago, and the news is a big relief.
Although PSA is almost 11 now, we can wait till (IF) it reaches 20 before taking action. Because.......the bone scan showed arthritis, NOT metastases (I'd been getting worried about the pain). And....The CT scans were clear except for small nodules on the lung, definitely not cancer, and probably caused by the serious chest infections I suffered bewtween October 2010 and January 2011.
So, on both counts......Phew!!!!!!!!!!!!! Anyway, I'm having a 4-weekly PSA test from now on, and see the ocologist in three months time, unless I see a big rise, in which event I have to ring him immediately to arrange more scans before then.
LATEST PSA RESULTS:
February 4 2011 - 10.65
February 28 2011 - 11.9
Time for action again after these latest results:
Mar 29 PSA 13.2
Apr 26 PSA 15.9
May 13PSA 19.07
As you can see, the level has kept rising, and the rise is increasing in speed.
I saw my oncologist on May 17th and we both agreed it was decision time. More scans are required. He asked if I'd like to wait till after the scans to decide what course I should take, but I opted there and then to recommence HT, even if only as a temporary measure to halt that PSA rise. Rather than Zoladex, I specified Casodex 150, which worked well for me towards the end of my two and a half years of HT. At least I've had a long break. It was 44 months to the day between my last Casodex tablet back in 2007 and my resumption of them on 17th May.
My scans were very quickly arranged - I had the bone scan on 1st June, and have the CT scan on June 17th. Now here's the dilemma I find myself in - and I know of many other guys who face the same. What on earth should I do if both scans are CLEAR? I'd have to be totally convinced that I had active cancer before I agreed to another long haul on HT. If I'm lucky enough to have good results from those scans, I'm strongly tempted to cease the Casodex and once again watch and wait for that PSA level to climb. I've always said that a 'highish' PSA didn't necessarly mean I was in trouble.
Oh well, 'watch this space' as they say. In the meantime I'm keeping everything crossed that I'll be able to post a good update here before the end of June.
I'd be very interested to hear from anyone who has had a PSA of around 20 - 30 for years without any resurgence of cancer. (Always the optimist)
Stay well my friends, George
Well, I live to fight more battles. I had a good appointment with my onco yesterday - I love the guy! lol He wasn't as concerned about my CT results as his nurse had been, thank God.
Liver cysts: BENIGN
Spine, neck and shoulders: Wear and tear & Arthritis (He says I'm an old git and can expect no better!).
Lungs: Nodules and scarring: Very very unlikely to be cancerous, more likely the result of infections and whooping cough in early years (and smoking of course!)
PSA: Now fallen to 3.35 I'm to stay on Casodex 150 for a while, but will be re-scanned if PSA rises.
An MDT team will discuss the lung results, and will pass it on to the appropriate field of expertise if there is some chest illness. I must admit, I had feared some bad news. And yes, I know...I MUST quit smoking. [Indeed!!]
Later: I now have the findings of the MDT which discussed my scan results on Thursday. My onco nurse (who was at the meeting) says the bottom line is that none of the consultants are sure what the lung nodules are:
Findings. Lung nodules are certainly bigger than in the January scan, but they can't decide if it's linked to PCa. If it IS - then I'm doing well on Casodex, so I'm on the right track. If the nodules AREN'T caused by PCa, then they're too small to to require any action at the moment.
Decision: Another scan in 3 months. If they've stayed the same size - no need to intervene. If they are larger and my PSA has risen, then I need the specific cancer treatment, If they are larger but PSA is low, then I'll be referred to a lung specialist.
One last thing....Why on earth would my Testosterone come back as 31.2 (British units) while Casodex 150 brought my PSA down to 3.35? I have NEVER seen such a high figure. During my 44 months without treatment my usual Testosterone level ranged between 19 and 25 every month. I believe the normal, good level for a fit guy is around 25.
My oncologist wasn't at all concerned, but I find it strange - or am I forgetting something obvious? Any ideas?
[When he isn't having tests and scans and dealing with his family's issues, George not only helps me considerably with some of the management of the site, but he also runs an irreverent site Bollocks-To-PCa. Apart from the exchange of some fairly scatalogical material, the boys and their partners get together once a year for a celebration of their continued survival. Here's the group from the last meeting earlier this month.]
Thanks for inserting the photo of 'The Crazy Gang', Terry. My wife and I are on the far right in the back row.
It saddens me that three of our friends have lost the fight since that photo was taken just five months ago. It shows what a horrible, 'sneaky' disease this is, and how we must always remain vigilant, and as pro-active in our treatment as it's possible to be.
My results since the last update are as follows:
Jul 19 PSA 2.0 Testosterone 31.9
Aug 16 PSA 1.6 Testoterone 27.6
Sept 21 PSA 1.0 Testosterone 31.2
Sept 22 CT SCAN Good result this time. Patches on lungs have now shrunk to the same size they were in January, after a worrying increase in size in June. And after six and a half years I still have no bone or lymph node metasteses.
Sept 28 PSA 0.91 Tesosterone 28.4
Oct 8th: PSA 1.1 Testosterone 29.9 I'm having to take a Tamoxifen 10mg tablet twice a week to help ease awful 'breast sensitivity pain'. This didn't happen last time I had Casodex in 2007, but then my testosterone level was tiny after 2yrs of Zoladex. However, this time my testosterone is very high, hence this side effect (so I'm told).
5th DEC: PSA 1.0 Testosterone 34.4
14th Dec: I stopped Casodex 150 because of side effects. The swelling and sensitivity in the breasts was too uncomfortable,and it seemed to me that I had all the symtptoms of Interstitial Lung Disease (ILD) a very common SE of Casodex. As my PSA has been low for a while, I felt it was safe to stop the treatment, and my oncologist agreed.
I have an appointment with him on Jan 10th and will discuss other options, should they be necessary. My own feeling is that I'd like to stay on 'Active Surveillance' for as long as possible, having my PSA checked every month.
Jan 4th PSA 2.68 Testosterone 34.0
Jan 10th Oncolgist agrees time for action if PSA hits 10
4-weekly tests necessary.
Jan 30th: PSA 7.0 Testosterone 27.1
Oh bu@@er! Not really what I wanted. Rang oncologist and have opted to try Prostap injections this time round.
Will probably commence those next week.
Feb 27th: PSA 11.8 Not good.
Not on HT yet, but see onco on 13th March and will agree to start it immediately.
PSA has quadrupled in 2 months, and has gone up from 1.0 to 12.0 in 3 months.
March 9th PSA 12.77 Testosterone 26.9
March 14th. Started 3 week course of Cyproterone tablets ahead of HT injection.
March 22 MRI scan done.
March 22 first injection of PROSTAP (3.75mg, one month's dose).
March 24 SEVEN YEARS since PCa journey began
March 28th 2012: MRI result: 'Bone marrow signal a little heterogenous'.
March 29th Blood tests reveal red blood cell (RBC) and Haemoglobin counts have fallen below normal range. Calcium is also surprisingly low.
April 12th PSA 2.7 Testosterone 0.4
April 19th 2nd one-monthly Prostap jab.
I'm being treated with ferrous sulphate capsules to combat anaemia, and with tablets to try and get my calcium level back to normal
May 15th PSA 0.7 RBC and haemoglobin still falling.
May 17th 3rd Prostap injection.
That Prostap injection on May 17th was my last one.
It became obvious to me that I had only started getting falling red blood counts and other odd blood test results since I had started that HT drug.
Although Prostap worked incredibly well in bring my PSA down fast, it worked just too fast in flattening my testosterone.
That had fallen from 27.0 nmol to 0.4 in five weeks, whereas Zoladex had taken 16 months to bring it to that level during my first round of HT in 2005 - 2007.
I honestly think that this recent and sudden sudden testosterone deprivation was a shock to my system.
For a lot of guys I know, Prostap has worked exceptionally well, without side effects, but as is usually the case, we all react differently to medication. We are each unique in the way our bodies deal with treatments.
My anaemia worsened during three months on Prostap, and iron supplements presrcibed by my GP played havoc with my bowels. Frankly, I couldn't stand taking the stuff.
On 14th June I had my first Zoladex jab since 2007. I opted for just the one month dose at first, to see how I felt on it. Amazingly, all my blood test results returned to normal after the four weeks, so I gladly chose to have Zoladex 3-monthly for the foreseeable future.
In June, I did something I wish I had done years ago.....I asked to be referred to a consultant at my local hospice. I felt I needed someone else to bounce questions off. For months I had been worried about that 'dubious' bone marrow signal spotted on the MRI in March, as well as with the increasing pain in my neck and shoulders - plus severe pain in my right leg when walking, and neither my oncologist nor my GP could come up with any answers.
I would strongly recommend that any guy here with similar worries asks about local hospice involvement.
Like many others, I'd always felt that these places were only for the terminally ill.
Yes, I know that a lot of us were given a dire prognosis when we were first dianosed with PCa, but there was no way we would consider ourselves terminal, no matter what the 'experts' told us. We refused to accept that notion.
The doctorI see monthly at the hospice is actually a Palliative Care consultant, but he has done more for me in a few months than other consualtants have done in years.
Within minutes of seeing him for the first time, he had examined my right leg and immediately diagnosed artery trouple (claudication) when only days before my GP had said it was sciatica and was about to refer my for physio (and that would have been disastrous). Incidentally, he also said to throw the iron supplements in the bin. That suggestion alone made my day!
I have now seen a vasular surgeon and a scan of my right leg is being arranged. This should happen in the next few weeks, and then I return to see the surgeon to discuss the results. I am hoping to avoid surgery (and yes, Terry....I have cut right back on the ciggies, and hope to quit smoking completely). [About time, George. All it takes is a tad of willpower:-) ]
As for the neck and shoulder pain, I guess I have to live with it, like so many people. One thing is for sure, it isn't cancer in the bones. I consider myself extremely fortunate to be still riding my luck after seven and a half years.
Recent PSA and testosterone results:
July 9th: PSA 0.3 T 0.2
Aug 13th PSA 0.3 T <0.1
Sept 7th PSA 0.27
Oct 1st PSA 0.2
One last thing......this time round, Zoladex isn't tiring me out in the way it did in the past. Perhaps those 37 RT treatments in 2005 contributed a lot to the fatigue I suffered for over two years back then.
Good luck my friends, and never never never give up.
Time for another update. The good news is that I DID quit smoking, and the even better news is that I won't be having surgery for my vascular problems as long as I stay 'smoke-free' and active. [Good on you George!!]
Latest PSA results (I've been back on Zoladex for nine months):
Oct 3rd Zoladex jab (3 monthly)
Nov PSA 0.2
Dec PSA 0.2
Dec 27 Zoladex jab (3 monthly)
Jan 11th PSA 0.15
Feb 18th PSA 0.1
Mar 18th PSA 0.2
Mar 22 Zoladex jab (3 monthly)
March 24th: EIGHT years since my very first PSA test came back at 182.
Wishing you all the very best,
An end of year update from me:
Apr 15 PSA 0.2
May 15 PSA 0.14
Jun 10 PSA 0.1
Jul 22 PSA <0.1 Testosterone 0.1
Lowest PSA so far on this, my third time on HT (been on it for 17 months now).
PSA <0.1 Testosterone 0.1
PSA 0.12 Testosterone <1.0
Nov 1st PSA 0.1 Testosterone 0.1
Dec 2nd PSA 0.1 Testosterone 0.1
(Still sticking with the Jane Plant Diet)
Feb 3rd PSA 0.12
Feb 11th Oncology appointment.
Chronic fatigue has struck again, so it's time to take a 'hormone' holiday.
This third time round on HT has lasted 23 months, and the last 12 months have shown a stable PSA of between 0.10 and 0.12
No Zoladex for a long while (I HOPE). Fingers crossed.
March 3rd PSA <0.1 T <0.1
April 1st PSA <0.1 T 0.1
May 1st PSA 0.14 T <0.1
May 27th PSA 0.157 T 0.1
June 25th PSA 0.2 T 0.1
For some reason testosterone isn't returning to normal as quickly as it did during previous 'hormone holidays'
Aug 4th: PSA: 0.25 T <1.0
Sept 15th: PSA 0.429 T 3.3 (UK units of measurement)
Finally, T is rising, for the first time in 2 years
Testosterone 5.4 (UK values)
Nov 10th: PSA 1.29
Testosterone: 9.2 (UK values)
Dec 8th: PSA 2.2 Testosterone 9.5 nmol/L
Jan 5th: PSA 3.09 Testosterone 10.6 nmol/L
Feb 3rd: PSA 4.39 Testosterone 8.5nmol/L
That PSA level is now increasing at a higher rate, but I'm hoping to get at least 3 more months of this 'hormone holiday' before I have to dash back to treatment.
Have decided to take action if PSA climbs to 10.0
Feb 17th PSA 6.1 T 9.6 nmol/L
Oncologist has referred me for a CT scan.
March 10th PSA 7.62 T 9.0 nmol/L
Tuesday 24th March 2015
Well, what do you know? I'm still here, 10 years after being told I was on my way out.
My luck is holding, RT was effectively delivered, the first round of hormone therapy worked well, and intermittent HT has worked equally well for the last 7 years.
I'm about to return to treatment after a 15 month break as PSA is rising quickly again.
Results of a CT scan I'm having on April 1st (International Urologists' Day) will decide whether I'm able to try Zoladex yet again.
My mantra remains the same: No dairy produce, no red meat, and I have daily veg juices, green tea, and a mountain of supplements.
And I stay very pro-active in the fight against those 'tiger cells', as they were called. Monthly PSA tests and double checking that any referrals for scans or whatever made by doctors has actually reached the department involved.
Too many errors still occur between you leaving a consulting room and waiting for a hospital letter to arrive.
If I don't hear anything in 14 days, I ring up the secretaries involved.
One annoying side effect of my 10 year battle is this:
My memory and concentration is appalling. I'm never sure what month it is, never mind what day.
But hey, it's a small price to pay for my unexpected, continued survival.
And as I sit here thanking God I have survived such a bad prognosis, I don't rejoice. I just feel incredibly lucky to be still around.
I have now lost 40 good PCa friends in the last 8 years, and most of you will have lost many too, but to anyone 'newish' on here, I would say, look around the members of these forums. When you click on their profiles, you'll be uplifted and inspired to see how many long term survivors are amongst us now.
Hoping I'm here in March 2016 for another update (I'd better be...I've already booked the B2PCa 2016 annual 'do').
Stay well my friends,
April 4th PSA 8.73 T 9.5
April 21st PSA 9.9
April 28th Oncologist appointment. CT scan with contrast (April 1st) result – All clear.
We've agreed to let my PSA rise to almost 20 before resuming hormone therapy.
But to keep on top of it, next appointment will be in 8 weeks.
I had a bit of a surprise today too. I was fully expecting to have to go straight back onto HT (PSA has climbed to 9.9), but my oncologist, who I trust completely, has suggested I take a longer break.
Since the PSA has been rising at a slow rate (between 1.0 and 1.5 a month) he suggests I wait till it approaches 20.0
Given my history over the last 10 years, he thinks I'm more likely to get greater benefit from Zoladex by staying off it as long as possible. I fully agree with his thinking. It will do me good to delay the inevitable.
June 2nd PSA 12.0 T 12.7
Well, my hormone holiday is coming to an end.
Saw my onco yesterday and as PSA is now up to 15.5 and rising at a faster rate, I'm due to start cyproterone tablets on 22nd Aug, then have a Zoladex jab on 29th.
So this time round, my body has been free of the drug for 18 months.
It's nowhere near as long as my very first 'holiday' of 44 months, but I certainly feel better for the break.
Happy with that!
All the best,
20th July PSA 16.9 Testosterone 12.9nmol/L
Aug 17th: PSA now 20.9
Aug 20th: Started three week course of Cyproterone tablets.
Aug 27th: First Zoladex (10.8) injection since Nov 2013
Hello again my friends,
I had bloods done yesterday and got the results today.
Intermittent HT is working well for me yet again.
In just 4 weeks my PSA has dropped from 21.9ug/L to 7.16ug/L while testosterone has shot down from 12.9nmol/L to 0.9nmol/L
This through just the 3 weeks course of Cyproterone and a Zoldadex injection done on 27th Aug.
It's always a worrying time for me when I end a hormone holiday and resume treatment.
I always wonder, will it still work?
Well, for the fourth time in ten and a half years it has.
I know I'll never beat this cancer, but I will take it to a high scoring draw!
Oct 12th: PSA 3.00 ug/L, Testosterone <1.0/nmoL
14th Dec: PSA 1.02ug/L, Testosterone <0.4nmol/L
4th Jan: PSA 0.71 ug/L, Testosterone <1.0/nmoL
15th Feb: PSA 0.575
18th Feb 3 - monthly Zoladex jab
14th March PSA 0.410, Testosterone <0.4nmoL
PSA 0.33 Testosterone <1.0nmoL
May 9th PSA 0.323
May 17th 3-monthly Zoladex Injection
6th June: PSA 0.284
18th July: PSA 0.197
4th Aug: 3-monthly Zoladex injection
26th Aug: PSA 0.17
23rd Sept: PSA 0.148, Testosterone 0.4
20th Oct: PSA 0.139
16th Dec: PSA 0.17
Oncologist and I agreed it's time to have a 'hormone holiday' again. Cancelled the Zoladex injection due Jan 2017.
Suffering from pneumonia from mid December.
I'd had a pneumonia vaccination, but apparently you can be hit my another strain of it.
16th Jan: PSA 0.212
17th Feb: PSA 0.126 Testosterone 0.4 nmol/L
George's e-mail address is: firstname.lastname@example.org