Hi Guys, I am new to this group. My name is Paul, I live in Perth, Western Australia and I am 49 years old. I have no family history of PCa, but I have recently been diagnosed Stage IV, after being told by the GP and Urologist, that my rising PSA levels were 'probably nothing'. They both gave me antibiotics, expecting my condition and symptoms to be caused by an infection in the prostate. I was shocked beyond belief when the Urologogist did a biopsy and it came back that I had a large and very aggressive cancer, with Gleason scores of 8 in of the samples taken and 2 9's and one 10. I was sent off for a bone scan to check for metastasis and the nightmare continued when that came back positive for spread to my skeleton in 7 places.
I was only diagnosed a little over a week ago and although I am overwhelmed, I have found many, many inspirational stories that give me great hope. I have two beautiful young daughters aged 8 and 9 and I am determined to watch them grow up.
My purpose for joining this group is two-fold; 1 to learn as much as possible and 2, to reach out to survivors who have overcome the disease and plan to keep on going.
Thanks in advance,
Paul.
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Please stay strong! With treatment there is still hope! I am 58 years old and found out last Decmber that Out of nowhere I had high risk cancer that spread to the local lymph nodes. You are right, it is a shock when they tell you. Usually they do not want to do surgery if it has spread, but newer studies have shown improved 10 year results with surgery followed by radiation. Had to sweet talk my surgeon to operate. Had robotic surgery three days ago and I am at home recovering. The pathology report is not yet back but is is at least T3N2. In a month I will start radiation and hormonal therapies.
There are a lot of men in the group that helped me with their stories and information. Please know, YOU ARE NOT ALONE! We are all pulling for you.
Paul, I feel your pain, as only someone who was diagnosed at age 49 with stage 4 Gleason 10 prostate Cancer can, because that was me 10 years ago. There has been so many new therapies, and there is so much in the pipeline. You will go through hormone therapy, hopefully it works for a long time, and it can. It did for me. There are newer better drugs than when I started. Try to live every day. It is great that you have a goal to watch your daughters grow, that was the goal I had, now she is in grad school. Keep us posted on what is going on, there are many knowledgeable people in Prostate Cancer following this list, and they have helped many of us.
Dan
"If we are afraid of dying, we can no longer live"
Thanks Dan, I don't feel so alone anymore. I am meeting with the medical people soon, but I am also exploring other therapies, to boost my immune system etc. Cheers.
Diagnosed in 2004 with Gleason 3+4 followed immediately with radical prostatectomy, asked for adjuvant, Neoadjuvent coverage with antibiotic followed by radiation of the bed of the Prostate and hormone implants for 12 months - Zoladex Later went onto Lucrin intermittently in effort to not develop resistance ... Brought PSA down.
You might like to try Astragalus 8 which is an old Chinese treatment to boost immune system ... You need to boost your immune system. Japanese studies with Astragalon 8 brought great results for patients in Double blind study in a very large hospital.
I'm using Thompson's Astraforte which includes several other beneficial ingredients ... Available in Australia.
Cheers Aussiedad, I really appreciate the advice. My Naturopath has me on Vitamin D supplementation, plus RIBRAXX which is also an immune system booster (from Japan) which apparently has lots of studies backing up its efficacy.
Hi Paul. My story is much the same as yours: antibiotics for urinary track infections from a general practitioner prior to 2009. Inexplicable and excruciating back pain since 2009 but no other serious symptoms. No alert to the medics because I didn't fit the age profile for PCa, and also without an family cancer history, but energetic etc. Diagnosed Stage IV PCa 4 August 2011, aged 54, after a biopsy. Can't remember Gleason, but the PSA was 212 and bone mets chiefly in the neck vertebrae, skull and jaw, and right shoulder.
I had radiation treatment for the worst mets, and various bone-strengthening infusions for the next two years at 5-week intervals along with the usual hormone therapy. I'm convinced that I am a beneficiary of generations of Baby Boomers whose prostate problems led to intensive research - what gets funded gets researched. I'm so very grateful to the brothers who have preceeded me with the same condition!
I was also advised to see a cancer-specialising dietician here in Cape Town, South Africa. From 185cm 120kg ireduced to 89kg but am up above 126kg at present - with its own challenges! Exercise is essential - it does wonders for my mood, as does being out in the sun (I do also take serious Vitamin D daily) and I have found a natural immune booster often taken by AIDS patients. There is an interesting perspective on diet from one Ty Bollinger in the USA - perhaps you want to google him.
The wonderful thing, for me, is that with this condition has frightenened me so much more than anything before - in South Africa we think we're bullet-proof - so I prize relationships and experiences - fun and not - health and consciousness.
A Quaker, I find great solace in silence. i have a mantra I repeat when anxiety threatens to get the better of me at 3 o' clock in the morning.
My family were as devastated as I was at the diagnosis in 2011. It was as if I had to "get my affairs in order" - the diagnosis was that it was a very aggressive form of the cancer. In a sense they suffer more than I do now because they don't know how I am and they believe I'm putting up a brave face for them. So I try to be as honest and clear as possible with my wife especially. It's really brought us closer because there can be no secrets for us under these pressures.
The vital thing is to accept that there is no "right" way to deal with this. Do what works for you!
Take it easy. This community is a very supportive one - and a mine of valuable information. When I joined I didn't understand most of what they share, and I still am unclear about different protocols in different countries, but their presence was and is magic.
Hey Tony, thanks for your thoughtful reply, I really appreciate it. It seems as though you have done well so far and I hope that you continue to do well. I will definitely look into your suggestions. Can I ask what is the supplement they give to AIDS sufferers? I like your mind-body-spirit approach as that's what I'm working towards. I have never been a spiritual persona, but I do believe we are all connected at some level that science doesn't yet understand.
Keep fighting brother and Cape Town is very high on my to do list, so if and when I get around to getting to SA, I'll look you up for sure. Cheers Paul.
It's what I use but I'm not punting it - in fact this support site does not punt specific products to my knowledge. There are probably as useful immune boosters available from your local naturopath.
Go to the above site where you will find lots of mens stories with PC and you should begin to be able to see what others did after much research. Besides it was an Aussie who developed the site but now deceased. Get second opinions, research all options, decide and then you live with what you choose. Do not let anyone Dr or patient tell you what to do. Be your own advocate. My story is at the link look for Marr
Cheers, that is much appreciated. I learnt 5 years ago, when my mother died of lung cancer that you need to take charge and control your own treatment decisions. I will take advice, but I also do a lot of my own research and I will make the final decision. Keep fighting.
Hi Paul. Hang in there and stay positive. There are many options open to you. I too have a very aggressive cancer, Gleason score of 10-10 spread to the lymph nodes stage 4. My first set of doctors were pretty much doomsdayers so I did some research and found the best cancer hospital that had success rate with prostate cancer. Cancer hospitals are right on the edge of treatment and technology and they share there information word wide. You have some great cancer hospitals there in Australia so get on the internet do some research and set up an appointment with the hospital. Don't worry that your going to hurt your doctors feelings. At the hospital you will get a whole cancer team that will treat your body and your soul. You probably already been told that there is no cure for advanced prostate cancer, this may be true but they can control it.
I have been in treatment for a little over three years now at a great cancer hospital here in southern California and for now they have been able to control the spread of the cancer and reduce the size of the tumor. I am hormone therapy. I take Zytiga and a clinical trial drug ( no name just a number) and a lupron shot. I asked my doctor what we will do when this treatment stops working, he said don't worry I will find something else. Good luck Paul.
Thanks Ca-Darrell123, these are inspiring words. I live in Perth, but I believe Melbourne has the best facilities, so if necessary I'll go to Melbourne for treatment (It's only 3.5 hour flight). Thanks again.
I'd bet on St Vincent's hospital Sydney for best treatment ... See studies by A/Prof Emmett but especially watch the YouTube presentation by Professor Henry W at the University of Sydney ... The one which features the Gallium 68a scan (not the earlier Choline one which is out of date).
Get onto Astragalus 8 to boost your immune system.
Paul - the whole landscape in prostate cancer treatment is changing quickly and there's a lot of hope. I was diagnosed almost 4 years ago, with metastatic PCa (many lymph nodes in my chest, abdomen, and pelvis). I was 41 at the time, in great physical condition, and without symptoms. Like you, doctors attributed rising PSA to infection, and put me on antibiotics. PSA rose to 80 before anyone did any scans! I chose to be aggressive, and selected a treatment path that included Lupron, Avodart, and bicalutimide, followed by Zytiga and early course chemo. Once these drugs reduced my tumor burden, and decreased/stablilized my PSA, I had a prostetectomy. May doctors still won't do surgery in metastatic cases, but it is worth considering, as a method of tumor debulking. Recent studies have proven the benefit of early course chemo withn taxotere, as well. All of this resolved my LN activity, and brought my PSA to 1.0. A few months later, my PSA started to increase, so I quickly moved to Xtandi, which proved very beneficial to me, quickly dropping my PSA. I piled on this success with Provenge - the combination of continued Lupron/Avodart/Metformin, Xtandi, and Provenge has given me a undetectable PSA for two years, with no evident metastatic disease. As my story indicates, there's plenty you can do to fight the beast - like you, I have three daughters, now aged 14, 11, and 5, and am confident that I'm going to be around a good while yet! Paul
Cheers Paul, boy, age 41 with metastatic PCa, what a shock that must have been. Here I am thinking I'm way too young for this at 49. It sounds like you've had so many different treatments, but your results are truly inspirational. Well done and keep up the fight. I'm sure we'll talk again, Paul.
Dear Paul, My wife's mother was born in Kellerberrin and lived in Perth after they lost a station after a 5 year drought. We have visited Australia a number of times: Perth is a beautiful place to be.
Please talk to your doctor(s) about the CHAARTED Trial results that were reported by Dr. Sweeney, Dana-Farber Cancer Institute. The combination of hormone therapy and chemotherapy, when taken together, has produced dramatic results for several of the men involved with the Maine Coalition to Fight Prostate Cancer mcfpc.org who are facing your situation. There is an arsenal of new drugs for men in your situation: Provenge, Xtandi, Zytiga, Jevtana, Radium 223, et al. Please recognize you and your doctors have a lot of options. The doctors have gotten clever and smart about how to keep extending lives. Terry, tkungel@mcfpc.org
Hi Terry, Wow, Kelleberrin, is 2 and a half hours drive from where I live, out in the wheatbelt (half way to Kalgoorlie, which is in the gold-fields).
Thanks also for your words of inspiration. I have actually heard about the Chaarted study and it's results. Chemo scares me a little as my mother died from lung cancer 5 years ago and in my opinion, the chemo hastened her death. I will look into it further though, Cheers Paul.
It's a shocker, alright. The big surprise is that one just gets used to their new normal. Never expected to spend my "golden years" like this, but I'm thankful for every day.
So true Peter, I'm rapidly adjusting to my 'new normal'. Less than three weeks ago, I spoke with a guy in the waiting room at the hospital where I had my biopsy and he was about my age and had a radical prostatectomy 1 year earlier. I remember thinking, poor guy, what a thing to be dealing with (expecting my biopsy to come up clear) and now I would trade places with him. Actually, that's not true, as you say we each have our own challenge to deal with and I am rapidly coming to terms with it and plan to get on with the fight.
Magnus, congratulations, thanks for sharing. What was the treatment 24 years ago. And, if I may ask, what are you doing today as far as treatment/protocol?
I started with radiation, that lasted for 3 years. Then moved on to Casodex, That worked for 5 years. I tried Flutamide and Nilandron. I had a bad reaction to both. Moved on to DCA, which lasted for 4 years. Then Zytiga (3years), Provenge (took care of some spots in my lungs and now on Xtandi. As of yet I have not had chemo (Taxitere). It seems new drugs come down the pike and just keep on them. I have been very, very lucky so far. I feel blessed to have made it to 70 years old.
I forgot to mention, along the way I have taken a lot of herbal treatments and natural substances. To begin with I became a vegetarian right after I diagnosed. I do eat fish, eggs and diary in moderation. I have taken selenium and vitamin E, Essiac Tea, Vitamin D3, Garlic, and more. You can find a hundred anti cancer claims on the internet. Just do some research and use some good common sense.
Hello Paul, We fight this battle together. Keep encouraged, do all you can do and trust in the protocols that are available to us. I don't buy into dire possibilities, but live each day to the fullist. I too have kids and grandkids that I WILL see grow up. Thinking of you and walking together!! Gary
I was diagnosed 5 years ago. PSA of 105, quickly rising to over 200. Lytic lesions in 6 places, back, ribs & pelvis; so a very aggressive prostate cancer. I thought it was the standard "Don't buy any green bananas". Some things have worked; some haven't. But even so, I'm still here five years later and still looking to the future. You should be too. Calm down: learn everything you can about Prostate Cancer, especially as it relates to your specific situation; and you should be around for quite a while. I leave in a few days to attend my daughter's college graduation. Never expected to see that & yet here I go. You will too.
Hi and thanks so much for your message of inspiration. I am so glad you got to attend your daughter's graduation, I hope to attend both my daughter's graduations - and see them get married too! Cheers Paul.
Discovered my prostate cancer, Gleason 8 in 2008 at the age of 60. Had it removed (Da Vinci robot) but there was more cancer outside of the prostate than in it. I was given about 4 years longevity.And radiation was not an option. Started out on hormone therapy which kept my PSA at or near 0. Stopped hormones after 4 years. Taking xgeva now but my PSA has begun to rise. Still under 2.0 but climbing every visit. Have been able to do more or less everything I've wanted to do health wise except for sex. That ended with the operation. I've gone 3 1/2 years beyond what they had projected and still feel good. Three things I recommend to give you the best results. (1) Eat healthy as much as possible, (2) Stay active, exercise as you can, (3) Stay close to God, He gives a peace and helps far above the doctors. Appreciate every day and keep a positive attitude.
Thanks for your wise words of wisdom Jim. I appreciate your comments and advice. I've never been a spiritual person, but I am truly glad that your connection with god brings you peace. Keep up the fight.
Hi Paul. I live in Sydney and had proton Beam radiation for my Gleason 7 PCa in Korea in 2013. I wrote a best seller book on PCa in 2014. I have a second addition with 70 new pages and many upgrades going to printers in two months time. I am a regular speaker at prostate support groups in NSW. My 75 year old brother has stage 4 PCa with lymph nodes and about 30 bone lesions. He had HD braccy + EBRT 10 years ago, but had a recurrence three years ago for his Gleason 9 PCa. Presently on Enzalutamide. It probably dropped his PSA by half to 9. Zoladex,etc no longer effective. The oncologist wants to start chemo, but my brother and I are are sure that would wreck his immune system and send him down a slippery slide. I have spent hundreds and hundreds of hours researching alternative treatments. I am convinced that a suitable treatment regime is available to him that will banish his PCa. He is talking to a Gold Coast clinic that will put him on the Dr Rath protocol that is having outstanding results. Dr Matthias worked with Dr Linus Pauling who won two Nobel Prizes for medicine in the 1990's. Download his book "Victory over Cancer".
In the interim, his regime is:
1. Numerous sessions with a "mind" doctor who has unearthed traumatic events in his paste that he has now "resolved". (Unresolved trauma is an early catalyst to Cancer staerting). Accupunture and meditation
2. Alkalised his body pH to 7.3
3. Daily breakfast of flaxseed oil with cottage cheese blended with berries, nuts. This alone has saved others.
4. Removed all sugars, red meat, dairy (other than CC above), etc from his diet.
5. Takes vitamin D and other supplements. (Some are mushrooms extracts).
6. Green tea + cruciferous veggies, fruits, etc.
7. Dental amalgams replaced with porcelain
8. Daily 30 minutes exercise
The Rath protocol will continue the above, but will add high dose IV vitamin C, with lysine + proline + casein, etc. Hyperthermia etc may be added. Time will tell.
I don't know whether or not I am allowed to do this but I would be happy to open a direct dialogue. I'm contact able at anabcofprostatecancer@gmail.com.
I believe it is critical that you review Dr Rath's free book. Look at my web site or Amazon to confirm my integrity and background.
Hi Alan, thanks for your detailed message, there is a lot of info in there for me to look into. I will look into each and every suggestion you've made. It's great as I've already come across much of what you've suggested but I still have more research to do. The cottage cheese flaxseed mix is very similar to the Budwig protocol I've read about. I will be in touch again, thanks very much for taking the time to offer your suggestions. Cheers Paul.
Our kids are 5 and 8 years old. They were already getting weekly therapy due to recent divorce. I am the ex-wife and the PCa diagnosis swiftly healed our strained relationship as we now must really focus on our kids, but was also a devastating reality. I recommend counseling with a child therapist and open discussion about diagnosis. Our kids are aware of prostate cancer and that Dad is getting sicker but what they really understand is unknown. Now we spend time together instead of fight....the only positive cancer gave us. Ex-husband is involved in 2 cancer support groups and individual therapy as well.
We did start docetaxel right away with lupron. Read the Stampede and Chaarted trials....
Hi Cancersucks. Thanks for your thoughtful comments. At this stage, my wife and I have agreed that we don't want our kids to know. I am absolutely determined to beat this, using the best of traditional and alternative treatments, so hopefully we'll never have to tell them.
Thanks Bob, I will. The latest is I'm getting a second opinion from a new Urologist. The new guy has sent me off for a pet scan (PSMA) and MRI as he thinks I might be a candidate for a radical prostatectomy. I'm not sure if I'll go with the RP if he recommends it, but just doing my homework at this stage. The Urologist who gave me the diagnosis, said he could not operate and didn't request extra scans. The new guy tells me there is a survival benefit from an RP (even with advanced cases) but the literature I've found seems to indicate that while this is true, the research's authors stated that it could be down to a selection bias.
Cheers Maack1. I had a Zolodex implant today and it looks like I'll be getting Docataxel in about 1 month, for 6 cycles every 3 weeks. Thanks for taking the time to send your message.
You may want to discuss additional ADT medications being prescribed to continue as well as accompany eventual chemotherapy. See: tinyurl.com/nmwh2s4 . Please feel free to visit my website theprostateadvocate.com and particularly the menu word "Observations" where well over 200 papers explain the variety of issues that can accompany prostate cancer and considerations to counter those issues.
Hey there, I did the early lupron/docetaxel treatment. psa started at 750, lymph node involvement, 3 mets. one year later psa is at 0.15 and dropping. I continue to lift weights and run 3,4 miles at a time. Went 100% vegan, no vegetable oil, sugar, etc.
You are just getting started, talk to you again in 5 years or so.
Thanks Hidden I love your attitude. The shock and overwhelm has worn off and I now see this as a problem to solve. I also have gone vegan (occasional seafood) and given up sugar etc. I'm glad you're doing well.
I am in stage 4 bone cancer 4 yrs now. When first diagnosed I had a tumor where my prostate had been 5 years ago. I went thru radiation and all,it's side effects. Now I do hormone therapy and I have changed my diet to cancer fighting foods. I also use natural treatments with exercise everyday. I just completed immuno therapy 2 months ago and feel great.
I would suggest that you do research and ask your doctors a lot of questions. The side effects from some of the Meds is worse than the cancer. I flat refused to take some because of the side effects. I would suggest a combination of treatments. Meds and treatments from your Doctor. Use natural treatments (suplaments) where you can. Get a ninga bullet and drink smoothies and chage your diet to cancer fighting foods. Exercise exercise exercise is very important. And lastly good spirituality will help reduce stress. It is you body and you will have to find what works best for you. So far that is what has worked for me.
Never give up. Never give in. No matter how bad you might feel always get up and show up. It seems exercise always makes me feel better and always be optimistic and positive. Beast of luck to you. I know you can beat this.
Hi Jorton, not too bad thanks. I'm on a Zolodex implant at the moment, while I consider other treatment options. Fairly free of symptoms, feeling positive about the future. Thanks for asking.
I wish you the very best with your treatment. All I can really say is start doing all the research you can before you get any treatments or drugs. Don't trust the doctors to know everything. You will become more of an expert than most of them before this is over and you have to. Many of us learned the hard way not to just do as told. There are so many people on this site who have been there and you will get a great deal of information and help from them. Thankfully you found a good resource. My prayers are with you.
Thanks Charlean, wise words. I have already taken charge of my treatment decisions. Thanks for your kind words.
The iniial treatments are pretty well scoped out. You even have somme time before you need to start. But after treatment starts, start to think what to do about the longer term, and you can learn about this as you go, and the answers will be changing during that time as well.
Bonjour Paul, je m'appelle Anne-Marie, je suis française, je suis infirmière. Im 52 ans. Je vis dans le sud de la France près de la frontière espagnole avec mon beau mari Philippe 53 et nos deux filles Marion et Julie. En 2014, après le premier PSA 15,52, prostatectomie gleason 4 + 3 adt ENANTON 3 mois de traitement, radiothérapie, Enantone pendant 6 mois, radiothérapie sur un ganglion lymphatique APRES TEPSCAN CHOLINE, adt zoladex 3 mois, décembre 2017psa, 1,09 février tepscan psma Bruxelles.3 ganglions lymphatiques. Aujourd'hui PSA 13 .... demain casodex pour une semaine et puis Zoladex ... que dire ... nous apprécions toujours la vie et nous apprenons à garder le calme et se détendre (nous essayons) ,. Nous recherchons un traitement lu 177 psma en allemagne. Nous sommes en contact avec l'université de Heidelberg. Je crois aux avancées de la science. In France we say "life isn't a long and quiet river". We are on the rapids, We need to keep on s balance
Hope and enjoy life!! Take care
PS i know you beautiful country I've been to Australia years ago i
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Father 67 was just diagnosed with stage 4 that has spread to bones! 
Let me introduce myself.
Scary PSA results
should I stop Zytiga early?
