He was persuaded to have Laser treatment, more normally used for BPH (Benign Prostatic Hyperplasia).
"A Word of Warning for men diagnosed with Prostate Cancer"
When I arrived in Spain 10 years ago I was not covered by the National Health, so like many Ex pats I took out private medical insurance which I still have and use - here is my warning get as much information as you can before you decide on anything.
Last year I had my usual blood test and my G P said that my PSA count had risen to 9.77, and advised consulting a Urologist to get more information. I am 67, both my parents died from cancer in their early 60s! When I made the appointment I was not prepared for what he was about to tell me... Looking at the page concerning the PSA count, he said "You have a Prostate Cancer!!! I am going to prescribe a tablet that you take for one month [which was saw palmetto], then you will have another blood test and come back to see me with the results". One month later the count was 7.77.
"You need an operation to remove the Prostate and the cancer", he said and explained the usual operation which is invasive and means about 14+ days in hospital followed by a range of side effects that may or may not affect me afterwards.
He then went on to say that he could perform the operation using modern Laser technology that is less invasive and with a stay of only 4/5 days in hospital! but that would cost me an extra 1000 Euros. I weighed up the two and decided that the latter was the best option!... or so I thought.
The operation was planned for the following Wednesday, I was admitted and later taken down to the operating theatre. I was given an Epidural and all went well I was linked up to the usual drips and so commenced the healing process, the catheter was removed on the 4th day and when I satisfied them I could pass water OK and was allowed home. A further appointment was made for one month later for another blood test to check the PSA which I assumed now would be ZERO! To my horror it was roughly the same as before - 7.86, my biggest mistake was to have paid him first.
When I questioned this I was told I would now need further treatment and he would give me a letter to see an Oncologist... When I raised the point that he had said he would remove the tumour he got quite defensive giving me no real answer to my questions other than I still had Prostate Cancer! He told me to make another appointment so he could give me my report which contained the operation results plus the Biopsy report, also a letter of introduction to see the Oncologist.
I won't go into the why's and wherefores but it took three visits as each time he had forgotten or had some other excuse, I was very angry on my third wasted visit as he took a personal call on his mobile! Seeing I was annoyed he ended the call and said he would FAX it that evening to the surgery! I called and nothing had been sent. I complained to the receptionist that now he had his money that was that, she apologised and said she would call and get the FAX sent! I made an appointment to see my G P for the next day.
When I explained the whole situation he was concerned but being professional did not pass judgement but said that I must now see the Oncologist. An appointment was made and once again the results of the Biopsy was explained, when I said that I had paid extra on the understanding that it was to remove the Prostate she then told me that they only remove part of it and as my PSA was still high the Cancer was still present.
She was very polite and helpful and a couple tests were carried out, she then recommended a M R I scan of the pelvic area that way she could pinpoint any cells present, probably going onto the next procedure which was hormone and radiotherapy. The following week I arrived at the Radiology reception desk only to be told that it would be next week. I said after fasting for almost 20 hours that was not going to happen! I asked her to check with the Oncologist!!! After a somewhat irate phone call she found my appointment booking.
To say any confidence I had in the beginning at my first visit to the up market private hospital were now very, very low concerning the liaison between departments.
The scan went without problems and I was told to make another appointment for one week later and the report would be sent to the Oncologist, so I did not have queue up on the day. My appointment was for 10.30am. I arrived as usual 15 minutes before - the receptionist told me to take a seat and I sat and waited, and waited, and waited. The nurse told me the Dr was with the Radiologist.
At 11.16 I confronted the receptionist assuring her I was not aiming my complaint at her but I was still waiting and no one has explained WHY! The doctor appeared from another door and she came over and apologised for the delay and she understood my anger. This of course did not look good with other patients waiting, so I was taken into her office where she apologised yet again and said she had been to see the Radiologist to get the disc and the report - the disc was to show me on the computer screen the findings. But she said "I'm sorry but he has not finished the report."!!! I pointed out that it was a week ago the exam was done and it would have only needed a telephone call to change the appointment day if there was a problem.
So instead of a certified report from which to read and an on screen detailed chart to explain my results it was left to pen and paper to draw and explain that the tumour was on the left side of the prostate. I then explained after my first episode I had now lost any confidence in any information being given and demanded my Report and CD so I could get a second opinion.
I was taken to the Radiology reception and told to wait my turn and ask for the report and CD after showing my card and NIE... I'm very sorry but they are not ready, can you come tomorrow...
This was my first experience from the very newest purpose built Hospital on the Costa del Sol, as I pointed out to the Doctor it's not about health now it's all about "MONEY"... Now living on my pension and the Pound/Euro farce, my last Direct Debit showed that the premium had risen by almost 33% as we age the premiums increase.
I have yet to decide what to do after I see my G P ...
I visited my G P and explained the situation I had experienced, he made a comment that other patients had similar problems with the Hospital, but made no further remarks. I asked for a receta to have another blood test just to see what may or may not have changed, the test was very positive in most areas as I have hypertension and diabetes 2, but the one that I was more interested in was the PSA count which was now down to 5.37.
I made another appointment with the oncologist to see the report and be shewn the results on the P C but that did not happen, I was told again I needed to start the hormone therapy followed by radiotherapy! I then showed her my new PSA count, she made no comment about it but said, "I have explained to you the alternatives. You are the patient; some patients decide to have treatment others prefer to wait - it's up to you, think about it over the weekend and then decide."
I arrived home and went onto the Internet to check for more information, I wish I had found the YANA site before I had been rushed into things! I found it by accident I read the on line book and found it very reassuring and the information was much easier to understand so I'm now thinking along the more positive lines and will now look at other alternatives and decide against further treatment and do a regular PSA check...
P C D (retired)
Hola! Well, Spain has done us proud again ( I say that because it's now my adopted home ) not that my family approve of back in the U K. It was Nadal for the Tennis, and last Sunday the World Cup - for me the best team won.
So it's update time, a few months after joining YANA I started to look at alternatives and started my own regime of taking anti-oxidants that have a significant effect on retarding the growth of prostate cancer cells. I still have the small tumor on the left side, but I tend to forget about it.
OK, so my regime it's not a 100% proven medical but my GP goes along with it keeping a keen eye on any changes that up till now have not happened. I think any alternative is worth a try, for some it might seem like a snake oil cure, but I decided to try it and up until now my 3 monthly blood test that includes my PSA has hovered around the 5.34 to 6.72. The supplements I take along with a few others for my hypertension and diabetes are all natural extracts no petrochemical garbage! The main ones are all strong anti-oxidants namely Selenium, Grapeseed, Pomegranate and Goji Berry. Taken at different times during the day, they are easy to take with no side effects so for me I have managed to keep it stable without the nasty side effects of hormone and radio therapy.
I have my diabetes under control, along with my B P which has an occasional blip! But the old saying it never rains but it pours reared it's ugly head during last year's check up they found I have an AAA (Abdominal Aortic Aneurism) which will probably take me long before the cancer.
At the moment I'm on watchful waiting having a CAT scan every 6 months. Other than that I live each day to the full, I'm off on Sunday visiting friends in Portugal (but I won't mention the game) LOL...
Take care Best Regards
Peter in Spain.
Well after managing myself for over two years my last check up caused some concern. [Although Peter does not say why, his PSA was 12.4, so presumably that was the 'trigger'.]
In a matter of days I had been to see three specialists and had two scans! The one they rushed through was the Gamma ray scan. They were sure that the cancer had migrated to my bones, but it had not it only showed my osteoarthritis was worse.
I had agreed at my first interview that if there was any changes I would start the treatment. When I saw the Oncologist, Urologist and Radiotherapist they all said it was now time to start and had already penciled a start date! - which surprised me. The oncologist said to wait in the waiting room and he would see me in a few minutes, he called me in and went through all the options. [Peter evidently chose hypo-fractionated EBRT (External Beam Radiation Treatment) similar to CyberKnife®] He said they had been testing double dosage with good results so instead of 40 sessions over 2 months they were doing 20 over 1 month. As it involved a lot of early morning traveling I said yes.
This is now my sixth session, so far I have felt no ill effects, but I do seem to drop off during the evening for a little while.
Well here I am posting what I think is my last update!...
I completed my radiotherapy treatment end of May, which went very well just the usual side effects for a couple of weeks. After seeing the radiologist in Malaga he advised me to leave having my blood test for about a month just to allow thing to get back to normal.
After seeing my GP today I can say it is down to an all time low 3.37, and to expect further reductions as time goes on. My last visit is to see the Urologist next month to confirm all is well.
My best regards to all... Peter
I had my blood test end of October 2011 and my PSA is going down, 1.37! I see my Oncologist and Urologist this month to see what they say.
The only down side was my Uric Acid count was to high so I'm now on another pill (shakey shakey). My GP said it could be due to the Radiotherapy, or just another knot on the cord of getting old.
Take care, be safe.
So a year ago this month I finished my Radiotherapy, due to the Laser treatment I had 2 years previous they decided to do 20 double doses instead of the 40 lower doses.
Had my blood tests every 6 months and each time my PSA has risen slowly, on the 22nd May I saw my Oncologist who said they had expected it to be zero this time.
So I'm booked in for another blood test in September, if it's passes the 4 mark she said that I would probably have to be re scanned to find out if there is something still there.
As a further word of warning on medication we get prescribed, my cholesterol was always to high regardless of my diet. I found some of my meds were to blame! so I was put on Statins which worked great, in no time my numbers dropped into the safe zone... but boy did I suffer.
I checked out some forums and found that I was not alone, there must hundreds of thousands of us taking this miracle drug, but suffering debilitating side effect, which can lead to death.
So if you are over 60 and on Statins you must start to take Q10 which in itself is needed to maintain health.
The daily recomended intake of 100mg to replace the damage done by the Statins, don't just take my word for it check it out the web...
I will check back in October (hopefully with some good news)...
So here we go again, I knew things were wrong when the 3 crows came and sat on my terrace...
My last PSA showed just over 3, my Urologist & Oncologist agreed that things were not as they should be and said if the next blood test is over 4 I would need further treatment.
My next test was set for early September, for some reason the first PSA test was rejected and I had to do a follow up that week Thursday 13th! I arrived home did my usual things and forgot about it.
I went for a pee later, my normal flow ended then it changed to blood and a sudden plop as a large clot ended my pee! I managed to salvage the clot which resembled a small slug and put it in small tub and put it in the fridge (only me so no worries).
Over the next few days more blood more clots, I kept one more just for luck my Doctors appointment was on the Monday to check the PSA... it's high and you need to see the specialist as soon as possible prescribing an antibiotic to help things along (which really did nothing).
Due to the last PSA my Urologist had pre dated my next visit for the 25th September and the normal proceedure was to see the Oncologist 1 month later.
This was changed later by the Oncologist to the same date at the C D S Hospital in the evening,
My appointment was for 2.10pm, CARE the specialist hospital called the day before and asked me to get there around 10am, I gave the receptionist my papers and was seen almost straight away! he explained all the relevant info and said that I needed further treatment would now be on a 30 day hormone treatment called Casodex.
After 15 days I was to have an injection of another hormone! then at the end of the 30 days to have another blood test PSA + Testosterone.
My evening trip to Marbella went well, my Oncologist backed up what the Urologist had set up and did a few tests as I have quite a bit of pain in different areas! first he has set up another bone scan then another Nuclear which I can't decipher, which means I see him early November.
I started taking the Casodex 50mg yesterday and have to collect ampule for the injection today.
So I guess thats it for now... Oh and with that all done the crows have now gone...
My first month of hormone treatment went as well as can be expected, had a lot of pain on the injection site for over 2 weeks, but was told it will fade (but if I rub it it's still there) but I believe it will gradually go away.
I have had no more blood in my urine scares, although I have to be honest when it happened it did scare me passing so much followed by the large clots, until they blocked the bladder.
My PSA is down to 5.6 from my last test, and the testosterone count is 0.67 which going by the normal count is not even in production, so pretty good I think.
My next appointment with my Urologist is in January when I'm down for another injection called PROCRIN? [This is Leuproreline/Leuprolide a synthetic hormone, more commonly known as Lupron] will know more when I see him.
It's now November 1st, I had my CAT scan yesterday, and my next appointment with my Oncologist for the results is in 2 weeks time, so I'm keeping fingers crossed that the scan is clear.
One thing that helps is how my friends always call if they don't see or hear from me after a couple of days, I just say I have good days and bad days! so if tomorrow is good I will see you for coffee or lunch if it's bad I keep busy at home although simple chores take longer now.
Today was a Fiesta day the rain had stopped and the sun shone, it was a good day! so I had lunch with two lady friends one is 78 the other 84 with talking about everything and anything and of course eating it lasted over 4 hours... it was a very good day.
As the year ends my update is the best news this year, after my episode in September my medical team have kept a close eye on me.
When my PSA shot up after the blood incident I was put on HT straight away, in November I had a CAT scan which showed some blips, another Nuclear bone scan was given and showed more degeneration in my arthritis. My blood test showed my PSA had almost halved, so I'm was now on the right track! I had the usual side effects not that I like them and apart from the flushes coping OK. The best was yet to come! my Oncologist shook my hand with the news I wanted to hear... the *C* had not migrated to my bones.
I saw my doctor earlier this month as my Blood sugar & Blood pressure were all over the place so a change in meds and another blood test was given.
I will be seeing both Urologist & Oncologist roughly every 4/5 weeks until they are happy that everything has settled down and going to plan.
Today 26/12/12 I had my good news, my PSA was down to 0.89, but after checking the rest of the test results she has put me on a new program due to the effects of last few months. A change in my Blood pressure & Glucose medication, and a new 6 month x 2 weekly visit to the medical centre to have them both checked out.
I also have to take my Blood pressure and Blood sugar every morning before breakfast, and take the meters each time for them to cross check and monitor.
So that is the best Xmas & New years gift I have to date...
All was going well until September 2012 I started passing pure blood and large clots over 3 weeks, treated with antibiotics but had no effect rushed into A&E after my bladder became blocked.
Spent 2 days in emergency ward having my bladder flushed with 5 gallons a saline solution that took hours to complete each day.
My PSA had shot up to 12.32 while my testosterone level was still way below 1.
In May this year I had my second Hormone injection, the original was Lupron Depot, but this time I was given Procrin, 2 days later I was taken ill with sickness and diarrhoea.
I could not eat and even drinking was an effort, this went on for over 7 months I lost over 20kg! I had scans and tests but no one was able to give me a satifactory answer as to what had happened.
As a result of the last scan they found 3 squatters, 1 in my bladder, and one either side in each lymph node, resulting in I'm now waiting for Surgery on the one in my Bladder.
As said before no one could give me an answer, either they did not know or felt it best not tell me, So I set out to find an answer myself.
Afrwe visiting many forums and "Q&A" sites I found a link that took me to a very technical amswer, after more searching and e mails to experts I was given an answer.
The FDA had at least 7 complaints after using Lupron, it had been found to alter and created an imbalance in the Hormone that controls the Gastric tract.
It brought on involuntary starvation burning up calories so fast that like the others I had no interest in food, the weight just fell away my usual Xlarge dropped back to a Medium.
CACS or Cachexia is diagnosed in terminally ill cancer patients who's prognosis is less than 3 months, I have lost all muscle tone and body mass which I now know is ireversable.
At one point I looked so ill my friends now admit they were sure I only had a few weeks to live, I saw my Oncologist afew weeks ago and she prescribed another Hormone treatment called Borea.
It is designed to trick the gastric / stomach into wanting food, I was now so anemic and depleted in several other minerals and vitamins, so more medication were prescribed to try and put back what was missing.
I think it started about a week ago, where anything other than porridge or milk suppliments were the only thing I had existed on! my tastes were slowly returning, not everything but mainly spicey or strong flavoured.
This week I had kippers for breakfast, even cauliflower cheese, and some fruits that had not passed my lips since May, even water and fruit juices tasted vile.
I see this as a turning point the first sign of feeling well my energy is improving slowly, short walks or simple tasks were so tiring it could take more than an hour to change a duvet cover.
I still have to find out the results of the bone scan, and what the lymph node squatters mean?
[Sadly, we were notified by Peter's daughter that Peter lost his battle in November. Her father shared his updates and she was immensely proud that he took the time to share his story and also with how he never gave up fighting and trying alternative approaches.]