I have resisted having a PSA test but have had some waterworks problems for around 10 years (sudden urges, dribbles). GP added PSA to a recent blood test and came back 10.0 ng/ml - Saw a urologist and had an 18 point biopsy - Never again! Had to have the next day off work but no infections.
I don't think much of any of the treatment options but have read a lot of good info. I have made big changes to diet and am doing meditation, imaging and so on. I believe my own immune system is my best bet for a cure. All I need to do is get those killer T cells to recognise cells that express PSA. My brother was recently diagnosed as well. I will let him know about YANA - I am so glad I found this website. Thanks for being here. More news later.
I have changed my diet to include more selenium, omega 3, green tea, fruit and veg. I have reduced red meats and cut out sugar and reduced fats. By November 08 my PSA had risen to 11 (from 10 in July) and in Feb 09 it was 12. I wonder why I just get whole numbers and do they round it off to whole numbers? My uro says it just happens my PSA is what it is. Anyway both GP and uro are now saying its time to do something about it. Things are tense at home as the fear of an uncertain outcome hangs over our heads. I have now retired and am driving my wife nuts as we make the change to seeing more of each other.
I am still undecided about treatment but afraid if I do nothing and the numbers keep rising I may have left it too late. There is a lot of conflicting information, advice and opinion around. My brother has opted for surgery in April. I am leaning towards EBRT at this time but radical surgery would be quicker. I have ruled out brachytherapy. Uro says there is nothing to pick between the two but he is a rather clinical b... I told him I still have painful orgasms 6 months after the biopsy and all he said was it should be better by now. I wonder if he nicked a nerve or something. Maybe he figured it doesn't matter as this guy will probably have it removed soon. I guess at the end of the day you take your chances and accept what comes.
I retired at the end of January and a week later found I have an inguinal hernia. Doctor says 'so what'. it might be a common condition but still a worry.
Anyway - next step is to decide on treatment. I asked for an appt with the radiologist to discuss options and opinions.
Will post more in next update.
By April 2009 my PSA rose to 12.0, 2 points in 6 months. GP said its time to make a treatment decision and I must admit I too was worried as the rise was more than I expected. I saw a radiation oncologist and commenced on Zoladex for three months.
By July my PSA fell to 1.0 and I was very pleased with this. The hot flashes were a bit of a problem and my libido fell to zero. Then I had the second Zoladex shot. After considering the side effects of radiation and the need to drive to the hospital every week day for two months, I made an appointment with a GP in Brisbane, 800km from home. I knew this GP from my previous job and respected his judgement and opinions. He referred me to a Urologist also in Brisbane. This Uro recommended surgery and advised he could perform an RP in a public hospital (PA). That was in October.
Why surgery? Briefly my reasons are - WW and diet changes did not stop the rise in PSA. Zoladex reduces PSA but cannot be used long term without unwanted side effects. No libido and no sexual response was changing who I am and was having a negative effect on our relationship. The side effects of radiation followed by the uncertainty of a complete cure was a worry. While RP is not ideal, my surgeon has had some excellent results with minimal leakage and is experienced in nerve sparing technique. He did warn that it may not be possible if the PC is too advanced. At the assessment appt, Dr M arranged to meet Lyn and I for his last appt and spent a long time examining my biopsy results and films and explained the pros and cons in great detail. We later did some research and discovered that Dr M is a leading surgeon and has pioneered some new techniques. While he normally operates in private hospitals he advised that he can operate in a large public hospital in Brisbane. I had been admitted to this hospital once before and feel very confident with the hospital and staff and especially with my uro. Much different to my earlier experiences.
So, feeling confident that this is the way to go, I am booked for surgery on Thursday 19th November. My brother also had his surgery there in April and is going well, although he had a different doctor.
Thanks to all the people who have emailed their support and best wishes to those undergoing treatment.
More news after the surgery.
Later: November 25 2009 I finally feel up to updating my story. I had surgery as planned last Thursday. The nurses were very supportive as they wheeled me to theatre, asked who I was, dob, etc a dozen times and the next thing I knew I was feeling very groggy in a room full of faces and people asking questions. All I wanted to do was go back to oblivion. I had not slept for 2 days prior to surgery and Lyn and I had driven 800km 2 days before hand. They took me up to the ward where I saw my beloved wife's face anxiously waiting. It was 6 hours since she last saw me. I did not sleep that night as I had tubes for drips, a catheter and was checked every hour or so. I also had two spare tubes in case the first one got blocked.
Next day the physio came to teach me how to breathe and get me on my feet. I did not feel ready but they got me up anyway. I had stockings on and things pumping my legs to aid circulation. They were removed and we went for a walk around the ward corridors using a walking frame. After one lap I said I couldn't do any more so it was off for a shower.
Me naked apart from my tubes, blood all round my 'old fella' and a great tube sticking out through it. Two nurses gave me a wash down. I was beyond embarrassment and I felt safe with them (emotionally). After that I felt dizzy and next thing passed out. When I came to there were people everywhere. A doctor checked me over and a nurse said I had been out for 5 minutes. Back to bed and begin to recover.
A few words on recovery; The day of surgery I could not keep my eyes open and the room felt very glary. I asked for the lights out and blinds closed. I did not sleep that night. Pain was OK due to on demand pain control.
Second day I felt good about surgery, everyone was positive and told me it went well. I saw the registrar who said I had a tiny prostate due to Zoladex. I was his first patient who had been on Zoladex prior to surgery. I felt positive and ready to try to get mobile. The catheter was not as bad as expected and the abdomen wound felt OK. I could not sit up without help. I had a bit of pureed porridge and fruit for breakfast. Drinking lots of water. I had not opened my bowels for two days and felt the need to go. The nurses helped me to the toilet but nothing doing. It hurt like hell and blood came from around the catheter. One nurse said it would come when ready and try to ignore it.
Did not sleep that night either. I had pain in my shoulder and chest and was very aware of my body. I could hear my heart beating all night, very disturbing. Next day I felt like crap, depressed, sorry for myself and wishing I had not had surgery. Later that day Lyn visited and insisted I watch TV. I didn't feel like doing anything, but there was a very interesting doco on Foxtel that got my attention off myself and after an hour I was feeling better.
By afternoon I was back on track. It appears that the day after surgery you may feel OK due to adrenaline and relief that it is over. Next day, shock sets in and you feel rotten and loss of hope. Getting my mind off the condition was the best thing. With Lyn's support and a return of appetite I started to improve.
I was discharged after 4 days and am now with Lyn at a nearby motel. I go back on 30th to have the catheter removed. Feeling much better and glad I did it.
Lyn is an angel and is putting up with much. It is a shame the hospital did not give her more support. She was not given any advice or comfort while waiting for me to return from surgery. People generally acted as if she was not there. I cannot complain about my treatment, but it would have been good if she had been included as part of the team. She is now supporting me and caring for me and herself without any help.
My thanks to mentors who have emailed their support and advice and especially to Joe Hodge who rang me twice in the hospital to encourage me. Thanks to Terry and all at YANA. Sorry for long winded update- more later. Keep up the fight against PCa. Life is for living.
It is 7 weeks post surgery and I have recently returned from a follow up visit to the hospital.
The good news: Surgery is healing very well, no blood in urine, continence 99% but still wear pads just in case. Doctor say he was able to spare both erectile nerves but no joy yet. I think I am still suffering effects of Zoladex, hot flashes and no libido to speak of. I am feeling positive and well. My strength is returning and I am quite active.
The not so good news: There were two positive margins on examination of prostate and involvement of left seminal vesicle. The tumour was 25% of the gland. Doc has referred me to a radiation oncologist in 3 months.
The dilemma: They are not sure if cancer cells are still present or not. PSA at 4 weeks was >0.03. PSA will be monitored prior to seeing RO. I am wondering if radiation may do more harm than good at this stage, especially if PSA drops to a lower level. Should I put off RT and monitor PSA for a while? At what point would RT become worthwhile?
Meanwhile life goes on and it is still worth pursuing goals.
Thanks to all at YANA for your support and best wishes to all fellow sufferers and their families.
Later: Lyn and I drove to Brisbane to see the radiation oncologist. Latest advice is that because of 2 positive margins and involvement of one seminal vesicle, I should undergo a further six weeks of radio therapy, just in case. Alternatively I could participate in a clinical trial where I would be assigned to either a group watching their PSA or a group receiving 60 greys of radiation.
The side effects of radiation were described. None good. However no one could tell me what would happen if I decide to have no further treatment. It comes down to a toss of a coin. Given that so far I have lost so much of my quality of life to Zoladex and surgery, I am leaning heavily to returning to Watchful Waiting and we will see what happens next.
Actually, I am very pleased because my latest PSA was undetectable, which has to be a good sign. If it remains undetectable I reckon I can say I am cured and if not, lets deal with it when the time comes. Next PSA in April, til then life is for living!!
Thanks again to all YANA contributors for your support and good wishes.
My PSA is rising after surgery and now 0.44. Seeing a Uro soon and hope to provide a complete update then.
Thanks and regards,
I have just returned from getting my latest PSA. It is now 1.29. Doesn't sound too bad does it? Problem is, it is now almost tripling every two months!
In October 2010 it became detectable post surgery at 0.05. January was 0.15 March was 0.44 and now 1.29. I believe I am eating the right things, getting exercise, drinking green tea and trying to stay positive.
I am seeing a new urologist on Monday 30 May. If anyone can offer any suggestions, so I can at least ask some intelligent questions, I would be grateful.
Thanks again to everone for your support.
It's been an interesting year. In 2011 I went through the preparation for adjuvant radiotherapy as my PSA was rising. Rising? It was doubling every 5 weeks and I was getting a bi panicky about it. I have heard that some PCas are Tigers. Iwas convinced I had the daddy of the Bengals. Yet, Lyn and I both felt uneasy about RT. By July 2011 PSA was up to 3.1.(from 1.4 in May). Surgery had left some side effects, impotency but thankfully very minor incontinence. Extra problems due to radiation did not seem worth it, especially since they could not actually pinpoint any tumour. At the last minute my rad. onc. sent me for an MRI and identified a suspect lymph node.
We agreed to try Zoladex again, however it was suggested to wait a while. By Feb 2012 PSA; was 16 so started on 3 monthly Zoladex implants. March reading was 4.5 and May is 0.1. Maybe the tiger is just a pussycat!!
Side effects are just hot flashes and night sweats. Not too bad in winter, but I have to throw off the blankets. Uro has prescribed Androcur 25mg per day. Feeling a bit wary about added side effects, but think it may be worth a go. Uro wants me to stay on Zoladex for a year and if PSA stays below 1, may have a break. I handle hot flashes by thinking about how those ca cells are suffering!!! ("die you little buggers!!")
Thats it for now. Best wishes to all fellow sufferers. Meanwhile, life is for living, so visiting the family, camping, sailing and motorhoming are on the agenda.
Its been a while since my last update and things seem to be going pretty well. My PSA has dropped to undetectable. I want to stop the Zoladex treatment but my URO wants me to stay on it until May next year. He says he would like to see if it stays low for 12 months and then go intermittent. That's OK but Zoladex affects other areas of life as well. After about 6 months I began to experience what I call 'feelings of impending doom' at night when trying to get to sleep. This is always just before a hot flash. ('Flash' is not quite right, they last several minutes with a lot of sweating, throwing off blankets and clothing, often followed by feeling cold.) Hard to explain, but I guess it is kind of like a panic attack. The uro prescribed Androcur, but when I read the fine print. I was horrified. Bad enough on Zoladex, loss of libido, feeling nothing like my 'normal' self. Androcur sounded like it would just about finish everything else off as well. My wife suggested anti- anxiety meds. Spoke to my GP and he gave me 25 mg Dothep at night. Works a treat and no side effects to worry about. My wife still says I am not 'myself' and that is just something we have to cope with as best we can. I know she is right, but that is the nature of this Pca and its consequences. Better than the alternative though!!
That's about all my news - changed email some while ago so apologies to anyone who has tried to contact me.
God bless all of us sufferers.
Not much to tell at the moment - just waiting on next PSA and due to see uro next month. No real changes since last update except did not have Zoladex implant in May. It's just wait and see. I am feeling good, doing a bit of work and saving for another cruise. Went on an 11 day cruise in March, first time- It was GREAT!! My advice - Do something you have always wanted to do but kept putting off.
It is now 9 months since my last Zoladex implant. PSA was 0.08 in July and 0.8 a week ago. While I am naturally concerned about this rise it is too early to panic so I will wait and see if the rate of increase improves. I plan to monitor at 6 week intervals for a while. On the good side, some small improvement in EF (erectile function). Could be some nerve regeneration but too early to say. Has anyone tried "Black Salve"? I read a bit about it and saw some results on a video. I am thinking about giving it a try internally, starting very small and see if any effect on PSA. I may as well be my own guinea pig! The medical options don't seem to hold any better prospects. Will keep you posted.
Best wishes to all fellow sufferers and your families.
Can't believe it's over a year since my last update, apologies for that. Let's get the bad news out of the way first. Around March my PSA started to rise- by June/July it was doubling every 4 weeks. Saw my uro in August and decided to go back on Zoladex 3 month implants when PSA estimated to reach around 20.
Mid September it was back for the big needle- my GP is gentle and anaeshetises my belly before she does the implant.
The good news - Last PSA early November was 1.35 so looks like Zoladex is still effective. I expect it will fall further. Otherwise health is not too bad for a 67 year old. I am back at work for 6 months for a stint as a part time employee. Looking forward to a cruise in February.
PCa does not dominate my thoughts any more. I often go for days without even thinking about it. I still have some confidence that a more effective treatment will be found before too long. On the other hand, the way the world is going, an early exit might not be so bad (just kidding!!)
Best wishes to all fellow sufferers and your families.
Early 2015 my PSA was around 1.7 and I started taking Casudex tablets daily. By July PSA had risen to 3.4.
In December PSA had risen to 11.7. I now see only my radiation oncologist as he is better equipped to monitor progress and I don't plan to have surgery anytime soon. I have now stopped Casudex and continuing Zoladex. I have been referred for a psma scan. This is fairly new technology and can see very small metastases. This should happen this month.
I will post an update after I see the scan results. Meanwhile I feel good and have no physical symptoms of pca.
Best wishes to all readers.
Last PSA was a bit of a shock, up to 22.9. Rad Onc referred me for a psma scan, very interesting day, no discomfort. They gave me a CD-ROM to take home. Clearly shows a bright spot in left hip area. I have noticed some pain in that area that I put down to back strain. Felt worse after I saw the scan! Psychosomatic?
Now I am to have 6 shots of radiation to left hip starting March 4. No other mets seen so that is something to be thankful for. Not sure if radiation is the best way to go but don't have many other choices so we will give it a bash and see what happens.
Best wishes to all
End of Feb, PSA up to 29.2 pre radiation. Mar 4 commenced 6 sessions of radiation, 5 greys per session. I did not experience any skin burning, however hip has felt weak ever since. I tire easily and walking is no fun due to discomfort in my hip.
I am due to see my rad onco next week. Just have to wait and see. Meanwhile I am taking a mix of bicarb soda and maple syrup. Google for details. It is supposed to kill cancer cells. Hit em while they are down I say. Anything worth a try. Don't fancy having chemo though. Will update after seeing onco.
Best wishes to all.
I visited my onco two weeks ago. PSA has dropped to 11.2. Hopefully will continue dropping. I did not realise how weak I have become until I put a new clutch in my daughter's car a few weeks ago. Took me two days and after that I was buggered. My hip is feeling better and I can walk a couple hundred metres now. I did some research into the bicarb maple syrup thing and it confirms my suspicion that all gets broken down long before any sugars reach the cancer cells. By the way, my onco says I probably have millions of them floating around even though they can't see them. Do something you enjoy he says.
Next PSA is in three weeks and I see the onco again. Will update story soon.
God bless all of us living this nightmare.
Best wishes to all sufferers and your families.
I visited my radiation oncologist today, PSA is down to 8.0. My weight has only dropped 1.5kg. RO is pleased with results and will see me again in 4 months. I am to continue on Zoladex as he believes most of the pc cells are still responding to treatment. I will check PSA with my gp in 2 months. So far a good result and worthy of a celebration. Thank you to all of you who are supporting me with your good wishes.
God bless all of us sufferers and our loved ones.
Latest PSA today is down to 5.03 from 8.0 6 weeks ago. No lasting side effects apart from tired and weight loss. I have lost 5.5 kg this year. It could be due to other factors as l have reduced appetite. I am having a gastroscopy and colonoscopy tomorrow to investigate.
Meanwhile, all smiles.
Thank you to all my supporters.
God bless all fellow sufferers.
Since my last update I have moved to Canada. The details are not really suitable for these pages.
Today I received my latest PSA and it is down to 3.4 and it appears it will continue to fall. The change has meant that I no longer have access to the wonderful health care system provided in Australia. However I have been happier since moving and I feel this has improved my overall health. I brought a 3 month Zoladex 10.8 depot with me from Australia. It would normally be due around now, however I have decided to save it for when and if the PSA begins to rise again. The cost of doctors and medications is very high here and my insurance won't cover a pre-existing condition. I plan to continue the maple syrup/baking powder as it is not doing any harm and may well be doing good. I plan also to try black salve internally. Has been tried by others without ill effects.
So, today I am very happy and feel cause to celebrate!!
Best wishes to all fellow sufferers, life is for living, so live while you can!!
With some trepidation I have decided to commence taking black salve, also known as cansema, internally. This treatment is not supported by the medical fraternity so it is well to note that I take it at my own risk. Those who may be interested can learn more by researching the internet. I plan to take one dose (about the size of a pea) daily for 10 days, then stop for ten days and repeat until I have taken 30 doses. I will then check my PSA.
I started by loading gel capsules with a dose measured by a plastic syringe. Next day, the black salve had dissolved the capsules, making a bit of a mess. Not such a good idea. It would probably be ok if the capsules were taken soon after filling. However, I took the salve with a piece of bread and followed by a good meal. It tastes a little bitter but no ill effects after 20 hours. Actually I feel quite good. I am also continuing with maple syrup and baking powder. If nothing else it helps pH levels.
Further information is on the web for anyone who may be interested. I have discontinued Zoladex ADT for now. I have one 3 month injection in reserve. Meanwhile life is for living, best wishes to all.
I have just taken the last dose of the first lot of 10. I have not noticed any adverse effects at all. Actually, I feel quite well. The black salve tastes terrible and looks worse. I tried it with bread but it burns my tongue for a while. Now I load a capsule using a plastic syringe just before I take it, followed by a good meal. The dose is around 0.3 cc by volume. No taste at all! At night I meditate and imagine the salve destroying cancer cells. The first pharmacy quoted 30c each for empty capsules, the second sold me 30 plus a pill bottle for $1.35. Go figure!! According to unknown internet sources I will wait 10 days before starting another course of 10. There is no science behind this. Just a hope that it will make a difference.
Best wishes to all, and thanks to all my supporters.
I stopped taking the black salve 2 days ago. Last night I felt a pulsating pain in the area that was radiated for a bone metastasis earlier this year. The pain could have been due to walking, however I choose to believe it is the salve doing its job and mopping up any remaining cancer cells in that area. No one really knows how to cure cancer at this stage and I see no harm in exercising faith. I visualise the salve in my bloodstream attacking all those little buggers. I also take vitamin B1 and a multi vitamin each day. A feeling of well-being, staying positive, eating healthy foods, laughing and having supportive people around me is so important at this time.
Best wishes to all.
I have completed the second batch of 10 black salve treatments. As I have no proof of any effects, my report is purely subjective and based on my personal experience.
First 10 day period: The day after I took my second capsule I experienced some looseness in bowel movement. Otherwise, no symptoms at all for the entire period. In fact, I felt quite well.
Second 10 day period: I now load each capsule just before taking it. I increased the dosage to 0.3 cc. The day after the second capsule I was loose in the bowels again. Otherwise normal. The night after the 4th capsule I felt pain in my hip in the area where I had radiotherapy earlier this year. I was also experiencing a strong metallic taste in my mouth and I was not sleeping well. The pain continued each night for the next 3 nights and has now eased, however I can still feel discomfort. I reduced the dosage to 0.2 cc. and the metallic taste has reduced.
It has been 6 weeks since my last Zoladex was due and I am back in the land of hot flashes, most noticeable at night. No corresponding increase of libido though.
I feel positive that the salve has produced some good effects, however will not know until my next PSA in December.
Thanks and regards to fellow sufferers and to all who are wishing me well.
Life is for living!!
On November 25 I took the final capsule of black salve. I had commenced 50 days earlier. My protocol was to take the capsules one per day with dinner for 10 days, none for 10 days, repeat and then the final ten for ten days. This is how it went; I felt no ill effects at any time, however I did feel some sensation around the area in my left hip where i had been radiated. I loaded 0.2cc of the salve into a gel capsule that I ate with food. I used a large plastic syringe to store and measure the salve. On the second day of each ten day group I had loose bowel motions. By the 8th day of each group I was tasting a metallic taste in my mouth that stopped when I stopped the capsules.
A few days after the final capsule I began to feel some itching in my back. I noticed there were hundreds of tiny, scabby feeling tiny sores all over my back. That would have been around December 1. The little sores spread all over my back and upper arms. They are not uncomfortable or weepy and only itch a little. They are now diminishing in number and should soon clear up altogether.
The question now is, are they due to prostate cancer cells being eliminated through my skin? I like to believe so. I had a PSA test December 16, however I cannot get the result until after January 3. I think that will tell the story.
Meanwhile, best wishes for Christmas and the new year for all of you who follow my story. Thank you for your support.
Just received my latest PSA and it is 12.9, up from 3.4 three months ago. This indicates a doubling time of 6 weeks which is a bit of a worry. My doctor suggests that it may be a rebound from ceasing Zoladex, so will have another test in 2 months. I plan to contact my oncologist in Newcastle to ask his advice, and we will see what develops. As for the black salve, who knows? I remain positive at this time, still hoping it will help. Meanwhile, I am grateful for the support of all those who love me. It is too early to be making plans at this stage, so we just take life one day at a time. Otherwise I am well.
I visited my doctor last week to get the result of my testosterone test. It was zero, undetectable. It is 7 months since my last Zoladex implant so the implications are that I have been chemically castrated and no longer need Zoladex. Dr is concerned about the effects of no testosterone on bone density, muscle mass, depression, weight gain etc. I am currently 77 Kg so no concerns there. Testosterone treatments are out of the question due to PCa. On the positive, ceasing Zoladex can have had no influence on PSA, which leaves my theory that the black salve has stirred up the cancer cells. More news in March when I will have my next PSA. Meanwhile I feel fine, so staying positive.
Today received the latest PSA. 48.6. Not what I was hoping for by any means. I feel well and have no symptoms. I do tire easily, but that could be due to an ongoing sinus infection. To look at me no one would suspect that I have cancer at all. I cannot obtain treatment in Canada unless something extraordinary happens so it will soon be decision time. Do I stay and take my chances? Do I return to Australia and have treatment? I plan to have another PSA in a month and see how it trends. I have contacted my oncologist in Australia, waiting his reply. Miracles still happen, don't they?
Les's e-mail address is: firstname.lastname@example.org