I'd been feeling tired for over a year and was getting up in the night 3 or 4 times to pee. I decided to see my GP.
24 March 05. My first inkling I was in trouble. Routine blood test revealed:
12 April 05. DRE.
14 April 05. Biopsy (by Cystoscopy)
18 April 05. Bonescan (Clear)
19 April 05. X-Rays of skull..Clear
(What? No brain?? Geez, can't be right...I'm a Geordie!)
26 April 05. Prostate Cancer confirmed. T4 with Gleason 3+3.(Later changed to 3+4 in Jan 06)
Urologist reckons I have 2 or 3, maybe even 5 yrs left, (miserable git). I am determined to prove him wrong!
He also seems to think my treatment plan will be hormone injections for the rest of my days.
It was at this point I turned to the internet and researched 24/7, looking for options.
I asked to be referred to an oncologist immediately - got to see one within weeks - and everything changed.
Dr. Ian Pedley (Newcastle Centre for Cancer Care) agreed we could try to beat this cancer.
Had 16 days on Cyproterene hormone tablets.
12 May 05. PSA 48.7
Also had first Zoladex injection.
15 May 05. Completely changed my diet after reading Prof Jane Plant`s books. Now totally non-dairy etc.
23 May 05. First MRI Scan. Cancer spread to seminal vesicle.
21 July 05. PSA 3.3
4th Aug 05. Second Zoldaex injection
9th Aug 05. Second MRI. Good result.Cancer
23rd Aug 05. Not great news. Oncologist says I am definitely a T4 because there is pelvic floor involvement and I have to have 7+ weeks(37 sessions) of Radiotherapy(3D-CRT) commencing 21st Sept, plus I must remain on Zoladex for the foreseeable future.
21Sept 05: RT Started..37 treatments totalling 74Gy, will end on 11thNov 05.
27 Sept 05.Oncologist
wants me to continue with the Zoladex for another 30 months.(3Yrs in total)
29thSept 05: PSA 2.01 Testosterone 1.4
13th Oct 05: PSA 0.9
11th Nov 05: Final RT treatment. No bad side-effects such as bowel trouble or skin irritation. Only thing was that urgency and frequency of urination started within a week of starting the RT. Have to take Flomax to ease the pressure and help the flow. Otherwise absolutely fine.
Jan 5th 06. PSA down to 0.2.
My body seems to be recovering well from the radiation. Sleeping pattern almost back to normal and the peeing problem is much, much improved.(Taking 1 Flomax around 8pm daily)
Jan 9th 06. First appointment with oncologist since the end of RT. He reckons I have cause to be a a bit more optimistic about the prognosis for this T4. He also told me that my original Gleason was, as I`d suspected, incorrect, and that it was at least a 7.
All during February and March I`ve felt extremely cold and tired, but blood tests are good, so I think it must be the Zoladex affecting me after 11 months on it.
March 30th 06: PSA 0.2
April 13th 06: 5th Zoladex Implant
June 22nd 06: PSA 0.2 (still)
July 6th 06: 6th Zoladex Implant
August 8th 06: Oncologist appointment.A bone scan is lined up for early 07,to check the effect that zoladex has had on my bones.
Another PSA Test: 0.12
14th Sept 06: PSA <0.1
21st Sept 06: 7th Zoladex Injection
After a really good few months, Ocober and November saw me completely exhausted, never felt tiredness like it.
A battery of blood tests revealed nothing obvious.
Dec 7th 06 DEXA SCAN (My first) NO OSTEOPOROSIS.
Dec 7th 06 PSA STILL < 0.1
Testosterone now down to 0.6, halved in the last 12 weeks. I'm wondering if this
lack of testosterone has caused the exhaustion? I see The oncologist on 12th Dec
12th Dec 06: I asked Oncolgist if I could stop zoladex in April 07, after 24 months on it. He was very much against it. Reached a compromise: If my PSA remains at <0.1 till August 07 (a full year at that level), then I can stop the treatment, but he warned that if the PSA was to rise again I could well be on zoladex or similar for life. My oncologist can't really help me with all my questions about hormone balance so I want to be referred to an endocrinologist. I've set the wheels in motion, as I want my energy levels raised somehow.
Dec 20th 06: Oncologist rang me and agrees that I can stop Zoladex as from now. Tomorrow's injection cancelled.
Dec 27th 06: Started CASODEX 150, one tablet daily. No other meds.
FULL LIST OF PSA RESULTS:
24 March 05: PSA 182
12 May 05: PSA 48.7
21 July 05: PSA 3.3
29 Sept 05: PSA 2.01 Testosterone 1.4
13 Oct 05: PSA 0.9
5 Jan 06. PSA 0.2.
30 Mar 06: PSA 0.2
22 June06: PSA 0.2
8 Aug 06: PSA 0.12 Tetosterone 1.3
14 Sep 06: PSA <0.1
7 Dec 06: PSA <0.1
Testosterone now down to 0.6,
4 Jan 07: PSA <0.1
down AGAIN: 0.3
1 Feb 07 : PSA <0.1
up, at last: 0.9
1 March 07:PSA <0.1
29 March 07: PSA <0.1
26 April 07: PSA <0.1
29 May 07: PSA <0.1
28 June 07: PSA <0.1
26 July 07: PSA <0.1
9th Aug 07: Saw an endocrinologist about tiredness. He diagnosed extreme exhaustion. Blood tests ordered, mainly hormonal.
LH 9.9 (normal 2 - 9)
FSH 9.1 (normal 3 -12)
23rd Aug 07: PSA <0.1
Testosterone 10.4 nmol/l
18th Sept 2007: Miraculous!! Oncologist agreed I can stop my medication, Casodex 150, immediately. I now hope to see a rise in PSA up to a reasonable plateau, and then keep everything crossed that it will stay at that level.
I'm going to make sure I continue having monthly PSA tests until I feel confident that the level has stabilised. Perhaps then I can have 3-monthly tests. But I definitely wouldn't go longer than that without testing.
22nd Sept 2007:
PSA < 0.1
Testosterone now 15.2
18th Oct 2007
4 weeks since all meds stopped)
8th Nov 2007: PSA 0.3
6th Dec 2007: PSA 0.4
20th Dec 2007:
TV Documentary 'I Can't Believe I'm Telling You This' (2007/2008), view at:
Jan 4th 2008
Jan 30th 2008
Feb 20th 2008
PSA 1.52 (Ooooops! Doubled)
PSA 1.1 (Down again, Phew!)
(Now 30 weeks of no meds at all)
(50 weeks off all meds)
Sept 16th 2008:
Well, I've made it. One full year without meds and today's results:
Oct 14 PSA 1.0 Testosterone 18.9
Nov 25 PSA 0.9
Jan 6th PSA 1.2 Testosterone 15.9
Jan 14th PSA 1.36 Testosterone 20.3
Feb 24th PSA 1.1 Testosterone 19.1
Apr 6th PSA 1.3 Testosterone 18.9
May 18th PSA 1.26
June 29th PSA 1.4 Testosterone 23.4
July 6th PSA 1.3
Began to take antidepressant pills (Venlafaxine), and look what happened next:
Aug 18th PSA 1.7
Sept 15th TWO YEARS since end of cancer meds.
Sept 15th: PSA 2.35
As soon as I heard that result I threw away the Venlafaxine pills, and asked for a re-test in four weeks.
Oct 13th: PSA 1.7 Testosterone 23.7
Nov 10th: PSA 2.74
Dec 8th: PSA 2.2
Jan 26th: PSA 3.29
March 2nd: PSA 3.0
March 29th: PSA 3.6
April 26th: PSA 4.8
May 21st: PSA 5.6 Testosterone: 24.5
June 1st PSA 5.87 Testosterone 19.5
June 28th PSA 5.2
July 26th PSA 5.4
Aug 16th PSA 5.7
Sept 20th 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 forseeable future.
OCT 4th 2010
PSA 6.79 Testosterone 20.3
Well, what do you know? A fall in the PSA this time.
This might give me another 3 or four months before the oncologist says 'Time for the scans'.
9th Nov. PSA 7.5
13th Dec. PSA 8.4
4th Jan: PSA 9.3
Oh dear! (well, that's better than my first response, which was FFS!!) :)
Had Bone scan and CT scans for first time since 2005.
Pain in shoulders and neck is Arthritis,NOT METASTASES.
CT scans revealed 'opacaties' on the lungs, but these are less than 5mm in size, and are the result of chest infections, NOT cancer. (Phew!!!)
Jan 25th: PSA 10.1 Testosterone 21.9
Feb 4th: PSA 10.65 Testosterone 23.3
Feb 28th: PSA 11.9
Mar 29th: PSA 13.2
Apr 26th: PSA 15.9 Testosterone 25.3
May 13th: PSA 19.07 Testosterone 24.5
May 17th: Oncologist has arranged more scans (CT & Bone)because of this rising PSA level.
I've opted to take Casodex 150 until I see him again on July 5th, by which time I'll have had another PSA test and the scan results can be discussed.
So,today I had my first Casodex 150 tablet in three years and eight months - to the day!
June 1st: Bone scan - no evidence of mets.
Jun 10th PSA 7.9 (after 25 days of Caodex 150)
June 17th CT Scan
No good evidence of mets, but liver cysts and nodules on lungs.
July 1st PSA 3.35
July 5th Oncologist Appointment:
Liver cysts benign, have arthritis in neck, shoulders plus a bit in the spine.
Lung nodules were larger than in January...MDT to discuss these in 2 days.
Staying on Casodex 150 for now.
8th July: MDT findings...uncertain, but very unlikely to be cancer in lungs. Must nave a repeat CT scan in 3 months, and see what that shows.
Probably will have to be referred to a lung specialist.
Jul 19 PSA 2.0
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?
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 Oncologist 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 doctor I 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. 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
My personal viewpoint:
IF YOU HAVE THIS CANCER STOP ALL DAIRY FOOD IMMEDIATELY.
Please learn all you can about a diet rich in PHYTOESTROGENS and shun all processed foods. Have lots of fruit and veg drinks daily,organic if at all possible. Use only filtered water, and never allow food to remain wrapped in thin plastics.
I believe Prof.Jane
Plant has proved beyond doubt that this diet is the way forward for anyone with breast or prostate cancer.
As for the medical profession...
`s your body they`re messing with. Never be fobbed off. Be very polite, but very, very firm with all the medics.