Advanced Prostate Cancer
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APc diagnosis with mets at age of 43

This is my first post on this site, but have been reading posts here since my diagnosis in December 2017. So my background is that I'm 43, have a young family, lived a healthy lifestyle with lots of exercise. I had symptoms of lower back ache (mild) but had a car accident 18 months previuosly, I went to the doctor as I had family history with my dad going through this last year. Early December I had tests showing a PSA of 55 (now risen to 68), Gleason score of 9, Mets showing spread to pelvis, spine, ribs, sternum and shoulders. I was given a very bleak outlook from my initial specialist which literally threw me off a cliff for a while. I decided to get a second opinion on treatment which gave a very different pathway and life expectancy. I am now on monthly hormone blocker injections, daily Zytiga tablets, monthly bone infusions. I also take POMI-T and eat as cleanly as possible, no read meat/chicken, no alcohol/sodas, limited refined sugar. The side effects are currently ok and I'm finding swimming and walking are helping with energy levels. While I am very new to 'living' with cancer, I am determined that it shouldn't consume my family's lives. I am aware this is mainly an older mans cancer, but it does hit younger guys too, I am living proof of that, I would be interested to hear from people with similar experiences who are of a similar age.

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I was diagnosed at age 46, PSA 286, Gleason 9 with lymph nodes in pelvis and abdomen involved. There was a lot of disease in my pelvic area and tumor was pushing into my bladder. First doc gave me 3 to 5 years so lets just say I didn't feel a lot of hope either. Its not an easy path but there is plenty to hope for my friend. My scans are currently clean with an undetectable PSA.

The most important thing I can tell you is educate yourself because you are going to have to make things happen for yourself. That can be anything from backing up a disagreement with a doctor to even finding yourself the best care possible. Nobody cares about you more than you and nobody is going to meet you half way with anything. Get involved with what is going on with the most current treatment data. The treatment for this disease has shifted even in the 2 years since I was diagnosed. Just look at this site in general. The common denominator is these guys are all over treatment options, the science of it and the what is what with this disease. We have some heavy hitters in this group.

Your life will change but its not over. Seek the best care from a major research hospital and a specialist who knows this disease. Not one that knows it from 5 years ago, one that is helping to blaze a path to put this shit behind us. This site is the best I have found and you will get some great advice. The exercise and diet is a great start. Hormone therapy sucks and what you have started doing is essential in fighting the effects. By the sounds of it you have a great attitude and already working your way ahead of this. Hang in there brother.

Ron

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Thanks for the advice Ron, I have only found strength and positivity from the people posting messages here.

The information out there on PC is so varied with much info being based on older men. This seems different to what I'm being told by my specialist, it's really hard to digest, who to listen to and who to filter out.

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Completely get it. My father used the saying "cant judge a man until you walk a mile in his shoes". The guys on here are walking it and now your walking with them.

Having children and the fear of not seeing them grow up and the thought of not being there for them is what scares me the most. I did my share of crying when first diagnosed. As counter intuitive as it sounds I started accepting the possibility of what could happen. The less anxious I felt the better I could think things through. It's definitely a lot to take in. I didn't even know the function of the prostate until this happened. Check out the you-tube video of Dr. Kwon and his take on the treatment of metastatic disease. I couldn't believe when I watched it. It gave me a ton of hope.

Ron

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Wow! That dr. Kwon of mayo clinic really knows how to cure instead of just treat prostate cancer. i see why so many have been telling ron and i to get an oncologist instead of just our urologist which we currently have. Lots of hope for even CURE from this video. Thank you.

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Dr. Kwon does work in Mayo's Urology Department and there are more than just him that are top notch working there. The great thing about the Mayo Clinic is that they will use unconventional therapy to treat cancer. Whether its an Urologist or Oncologist or both on your team, you should have one that specializes in prostate cancer.

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Wow...thanks for posting this. I am going to try to get my doctor to be more aggressive...I have 3 or 4 mets in pelvic bone and 3 or 4 nearby lymph nodes ....Taxotere made some disappear...and the remaining ones have shrunk almost in half...I want them ALL to go away. HMMM.

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Old mans disease it is not. I was initially diagnosed at 42 with 'not aggressive' Gleason 6, but by 43 and a second biopsy 'they found some more at Gleason 7'. My father had it 58 and got a radical prostectomy, uncles did the same and they are all here in their 70s. Figured that was my route, so had the surgery in Aug 2016 at 43.

This past Nov 2017, got news of a 'biochemical re-occurrence', never even heard of that. Initial reaction, was this can be easily fixed, but the more I dug in and researched, I am basically at a coin flip with some radiation for a durable remission. After that, it is long term treatment. It took a few weeks for that to set in.

I started ADT in December (monthly shots of Firmagon, had the second yesterday). Will do radiation in March.

Also have a young family, 2 kids, 7 and 10. And I can relate to your statement of you not wanting to impact them.

This board is amazing, very positive people and great advice with a lot of cutting edge knowledge. I check this place every morning for information.

Stay as positive as you can. There are a lot of medical options out there. Get opinions/treatment from a major cancer center if you can. With your age, they will get aggressive.

You have a long road ahead.

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easytiger -

I was recently diagnosed stage4 w/bone mets at 52. Zytiga+ADT+Prednisone.

I agree with the rest of the posts: Diet/exercise/build a medical team/take charge of your treatment, and most importantly positive mental attitude - I know, easier said than done. I started meditations as well, and as skeptical as I was prior to my diagnosis, I do find them useful now. I have twin boys 12yrs old, and find myself teary eyes at times thinking about the future. But the good news is that I'm getting much better at handling the distress and anxiety - and so will you with practice. I got this book on the mental game of PCa that I found useful for myself, and also my wife:

amazon.com/gp/product/B0164...

Your young age and the aggressiveness of the cancer may indicate a genetic mutation is at work. Mine is a BRCA2 mutaion. I HIGHLY recommend you do either a germline (hereditary) and/or somatic (tumor specific) genetic profiling. There are targeted therapies specifically for certain mutations that did not exist 5-10 years ago - and they are CONSTANTLY improving.

DO NOT look at the survival statistics. They are outdated, and backward looking. Read thru the pace of advances in immunotherapy and gene therapy in other cancer types, as well as PCa. There's a lot to be optimistic about.

stay positive - you have a long life ahead of you -

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Hi I was diagnosed last year Gleason 9 with PSA in the 30s with lots of infected lymph nodes to the chest area at the age of 47 My oncologist was not the greatest the first visit giving me stats of 1 year to 7 years. I remember leaning against the wall outside the clinic and having trouble breathing. It was a hard few months but I’ve realised on this site it is possible to live long happy lives with this type of cancer. I also had a dull ache in my back but no other symptoms. I feel gratitude they found it when they did as its meant that with aggressive treatment I have many many years ahead of me. I met a guy in the cancer clinic who had been diagnosed 16 years ago with G9 and metastatic who was still going strong that lifted me no end. I’m fit healthy and have always trained and had a healthy diet and weight so the diagnosis shocked me! I’m on Zytiga, Zoladex and steroids and I’m currently on 0.01psa. The fatigue is hard occasionally but I still walk miles and do weight bearing exercise. I take many supplements and eat an organic diet but I’ve still piled on a few pounds round the middle. I have 4 children so they keep me busy which in turn doesn’t give me a lot of time to dwell. Your on a good site here with many warriors on the same path. If ever you need any advice or just to chat we are all here. Your going to be ok and ignore stsys they are years old and don’t reflect age, new treatments etc👍

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Hey easeytiger, another young guy here. I was diagnosed in April 2016 at age 49, but based on symptoms, I must have had PCa at least two years before diagnosis. The physical aspect of the disease I can handle (pain, erectile dysfunction, no interest in sex, pain, loss of energy etc.). The mental and emotional challenges are harder to deal with. I too have young kids (now 10 and 11) and I get upset when I think about them growing up without a Dad. Hopefully that won't happen, but the thought creeps in from time to time. At the beginning, every little ache and pain was depressing and had me thinking the worst, but now, I'm prepared for whatever this condition throws at me. I think that PCa will one day become a chronic, but manageable condition, rather than a killer - hopefully in time for all of us in this group. Cheers from Australia.

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Hey man, I got diagnosed in 2010 at 44 because of major family history: 9 uncles and my dad with pc, all but one are still alive. An incredible amount of treatment options changed just in the first 1-2 years after I was diagnosed, and exponentially more since. Previous comments are right on. Dr. Kwan pointed me to chemo, which was NOT an option when I started, and after 6.5 years and forward I have bèen tumor and psa clear. You have options now and will have more all the time. Kick it's ass!

Take care, Bill

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I was 53 now 57 and I felt early to the party. I did hear of a sixteen yr old with APC. How brutal. .My theory is that the younger a man is the tougher the transition to no T would be. You seem level headed. The family hopefully gives you a lot of love .You have a lot to live for. So young hopefully young enough to benifit in upcoming breakthroughs. Sounds like you pulled yourself back from one Cliff doctor. You are doing what is nessesary to be with your family for decades..My dad had this also and I stupidly ignored and self medicated symptoms for yrs. instead of getting checked .He didn’t die from pc had surgery and took care of it until passing from an unrelated issue .I thought the worst case was to remove the prostate, didi’t know it could get worse than that. Follow your own path. It sounds pretty good. Good luck!

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Hi, my husband was diagnosed Jan 2017, age 43, with stage 4, psa 72, gleason 7 ( 3 +4 ), spread to lymph nodes and one spot on the ribs. Yes those first few months were not easy - researching different types of treatments and just wondering which way to turn. We also have a young daughter ( she is now 2 ), so there was the thoughts of how life can just be so unfair and throw this at you when there is also someone so young to worry about.

Anyway - we went the chemotherapy route ( 6 sessions of docetaxel ), along with monthly hormone injections ( Firmagon ), and xgeva for the bones. PSA came down to single figures, but never below 4. My husband then went to India for Tomotherapy and cyberknife radiation , was there 7 weeks in total, and he was then started on casodex as well. Latest psa tests have been 0.72 and 0.36, so looks like progress being made.... As i write this my husband is now back in India for antoher PET PSMA scan, and we are just keeping our fingers crossed that is shows significant reductions in the tumours.....

Agree with people here that it is all about coming to terms with it, and learning to adapt your lifestyle a little so that we can live with what has been handed to us. We are so positive that my husband is not going anywhere soon - and I believe that mental strength is a big player in this fight. My husband also takes turmeric daily, eats apricot kernels , drinks white tea, has cut out red meat and the majority of beer ( he now drinks red wine and soda instead - he could not give up everything ! ), and just generally makes sure his meals are healthy, full of colour and goodness. He has also started walking at least 4 times a week ( having never done any exercise more ). The side effects he suffers are manageable - hot flushes, and he does get joint stiffness as a result of the chemotherapy, but we are trying to find the best way to deal with this. All in all the side effects seem a small price to pay for the fact that he can be with us, and I am confident that at some point on the near future, there will be a way that this can become a chronic condition that can be lived with.

In the meantime, we enjoy life - he now treasures EVERY moment with his daughter, and we are looking to the future with hope...

Best Wishes X

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I was diagnosed in January 2015 at age 45. PSA over 5,300 (can't remember the exact number) with a Gleason 8 score. Still have moments of shock and awe when thinking about the onset of the symptoms and how quickly they went from tolerable to downright challenging. Started ADT and chemotherapy as that was the "standard of care" at the time. Had a reasonable PSA response and after 11 months hit a low of 1.25. Started to progress slowly and at 18 months was deemed to have progressed to next line of therapy which for me was Provenge. Actually had a PSA decline for first few months on Provenge and then 6 months later PSA started marching back up. Started Zytiga about a year ago and have had an amazing response - PSA now 0.04 - yeah!!

I was reasonably fit prior to Pca diagnosis but decided to level up after and switched to a vegan diet and active exercise regime. Also practice meditation and feel these changes have been a gift from the disease. Feel better than I ever have felt and am thankful for everyday.

Like others have stated being extremely active in your care is valuable. I see my oncologist every three months for 15 minutes. He's an amazing person and is always available when i have questions, however, the rubber hits the road for us day after day. This community is an amazing resource and I'm happy you've posted and shared your story.

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Hi howardroark

Would you mind sharing your exercise regime? I’m a keen swimmer and cyclist (although my specialist has said to shelve cycling for the moment), thinking of adding some resistance training/gym Work onto this too.

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When I was first diagnosed my frame was extremely weak so I was very careful. Primarily the elliptical runner, rowing machine and stationary bike. Over time I've benefited from a reduced cancer burden from the prescribed therapies and my bones have strengthened. So I've switched to cycling, running, mountian biking, cross country skiing and if at the gym I like the stairmill. Feels good for me to target about 60 minutes of moderate cardio and then some light strength training if at the gym. Recommend to start slow and be mindful of your bones. I broke 8 bones in 2016 - hit a tree mountain biking and then fell a few months later cross country skiing. Modified my behavior afterward to be much more careful and mindful of the damage cancer did to my bones. I started zytiga about a year ago and have a bit less energy as a result. Found that I really need my sleep and have lost the "man strength" that testosterone provides. Also find that extra pounds find their way to my waist if I eat much over 2,200 calories a day despite an active lifestyle. I think the hormone therapy slows our metabolism a bit which for me means eating much less than I was accustomed to eating. Enjoy the experimenting!!

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I was diagnosed one month after my 50th birthday. I too have a young child - 11 year old daughter. Hang in there,

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Go easy there Tiger.

Good Luck and Good Health.

j-o-h-n Wednesday 01/17/2018 9:22 PM EST

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Thanks to everyone who has posted following my message this week. It's been good to get direct accounts from people living with similar conditions and circumstances. I'm looking at getting a third opinion on treatment at a specialist hospital in London (The Royal Marsden).

Thanks to all.

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Good luck in the Marsdon it’s an excellent hospital. 👍

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Hello, everyone! I just wanted to express how grateful I am for this site and for all of you guys sharing your stories... I stumbled upon it very recently. My husband has been diagnosed this past Dec 2017 at the age of 44. Gleason score mostly 8's, one 7 and one 9 out of 12 samples. Metastases to pelvic bones, spot on the right rib, PSA 244. He is currently on Lupton and going through chemo, just finished #4. It is devastating since we are newlyweds who were hoping to start a family... but we banked his sperm via testicular biopsy and will proceed with IVF in July. His PSA went down to 1.7 on Feb 28th but is now up to 3.1, so I am trying not to panic. We went to John Hopkins in Dec and are now staying with my sister in Arizona while he is going through chemo at Arizona Oncology. Has anyone had any good experience with Mayo Clinic in AZ? Any docs anyone would recommend? I am wishing everyone a very happy Easter. You guys are CHAMPIONS!!!

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Thanks for sharing.

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Sloan Kettering and Mt Sinai in NYC are pretty good also. Stay away from "Cyber Knife" or any branded cures they tend to be oversold and not that good.

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