Hi all, I'm 69 years young always been healthy and fit and was advised last Thursday via zoom call by my radiation oncologist that I have a prognosis of a 3 to 5 year lifespan. My Psa at the onset of the journey was 6.1 and subsequent, MRI, Biopsy, CT and Pet scans have shown advanced PCa, 2 small spots in bones and 3 lymph nodes. Certainly not what we wanted to hear. It hit my wife and I like a steam train and many tears and hugs later we have to somehow now have come to terms with and accept this timeline or do we? We are obviously still not over the shock and our fear of the future plus our current accompanying stress and anxiety. My immediate reaction was to hit Doctor google in order to verify or disprove his assessment. After many hours I found Malecare and have found some solace in the stories that have been posted and the extensive knowledge that so many people in this group have. I have always been someone that looks to what can happen generally settling on the worst case scenario rather than the best case scenario. We are both locked into and despairing of this time frame which seems so short and consequently my google searches tend to be centered around finding examples of where this time frame has been exceeded . I received an implant of 10.8mg of Zoladex on saturday (ADT?) Prescribed by oncologist and a meeting on Friday @ the urologist clinic. We realise that life will be different from now on in lots of ways impacting upon us and our children and a much longer prognosis would give us all a ray of hope. Three to five years is so hard to accept even though we know it's not tomorrow. I eagerly await any feedback from the multitude of helpful people within this group. Thankyou Mal.
RECENTLY DIAGNOSED STAGE4 ADVANCED PC... - Advanced Prostate...
RECENTLY DIAGNOSED STAGE4 ADVANCED PCa WITH 2 METS IN BONES & 3 LYMPH NODES - Prognosis 3 - 5 yrs. How to cope and is 3 to 5 years realistic
Screw 3-5 years. Who the hell appointed that doc G-d? I hate when doctors give life expectancy. With today's treatments I'm guessing you'll live 15 more years. L'chaim!
Hi Go Bucks, I am so grateful that you responded so quickly and so positively. I hope that you don't mind that I checked on your profile and it looks like you have been on your journey for over 4 years. I certainly hope that you continue your journey with the same positive attitude for years to come and some of that rubs off on me. Thankyou so much it really mean a lot to us.
I think the most important thing is to get to a center of excellence as soon as you can and you will need an oncologist/radiologist and urologist. Ensure everyone is communicating. I would start immediately in Triplet therapy, to arrest the cancer, set up a plan to radiate the pelvis and spot radiate the bone and nodal lesions if possible. This will reduce the burden while cancer is asleep. Next I would get genetic germ line testing to see if you have any mutations such as BRACA 1 or 2, etc. That can enable the oncologist to tailor the treatment. Get into full proactive mode and learn everything you can. I think you will have many many years. I have learned a lot!
I had a similar diagnosis and given 18 months. Come July 2 it will be 5 years and I’m still doing well, feeling good
Hi 6357axbz, My wife and I would like to thankyou so much for taking the time to reply, you have instilled so much optimism in us for the future. It is so gratifying to hear of someone that not only battled against an 18 month prognosis but is still strong, doing well and feeling well 5 years later. Long may it continue. Thankyou it has meant a lot.
Mine was 12-18 mo. with bone, lymph nodes, and a full spiderweb of cancer in my ab. All nervous and venous bundles out of prostate area were gleason 9. Positive margins all around. Pathology looked horrid. Well, It's been a long row to hoe, but 5 1/2 years in I'm still here. Current prognosis is again 12 -18 mo. but I beat it once and may again... All will hinge of finding another treatment that may work.. Best off luck to you. Hit it hard, hit it early and you should have a way to go.... Check to profile of those of us that have been here a while.. But if you don't quit crying and give up you won't last long... Love and the right attitude ++ a good MO can get you a long way.
Radiation oncologist may be a wrong person to deal with metastatic prostate cancer. You have a relatively low PSA with two small bone and three lymph node metastases. You would find many men here with much more extensive metastases who have been effectively dealing with their cancer for many years. You need to get advice from a reputable MO. If radiation is part of the treatment, then a RO should be involved. Nowadays there are many treatments for advanced cancer. I am 82 dealing with prostate cancer for the past 11 years, the last four years with metastasis in multiple pelvic and abdominal lymph nodes.
Hi dac500, I am amazed that so many have replied to my post and the positive nature of all of the responses. You are an prime example of a fighter and that is obviously what I need to be. I'm not yet up to speed with the abbreviations that are used am I correct that an MO is a Medical Oncologist? We are thankful that there are so many men wishing to help others on their journey whilst also dealing with their own issues. Thankyou so much.
Discuss triplet therapy with your oncologist. Median survival is unknown but it was longer than 6 years, even longer with debulking the prostate with radiation:
prostatecancer.news/2021/05...
Hi Tall_Allen, What can we say other than thankyou so much for your reply. I have read multiple posts that you have made and each one I found comforting and to know that there are men around that are so knowledgeable and willing to offer advice. I hope that I don't become a burden on this forum as I commence my journey. I have a follow up meeting with my oncologist on the 8th November and will press for answers re the triplet therapy. During my testing (CT/Pet) I was sent to a different imaging cancer centre to where my oncologist resides and they have separately arranged a genitourinary oncology appointment late October and a radiology appointment mid November. I don't understand why my oncologist had sent me down the path of ADT and the other facility that also treats PCa wants me to attend Genitourinary and then Radiology? It's a long shot but have you experienced what appears to be a conflict of treatments. Once again my wife and I are very appreciative of your feedback.
You will need to advocate for yourself to some degree. The good news is you found the best source of information to help you do that. Nobody knows what your timeline will be so try not to think about that. Learn what is Standard Of Care for your level of disease via this site and NCCN Guidleine as sources. From there you will know when your Drs are offering you something different and you can decide if that difference is worth investigating. As PBP and TA have said triplet therapy is taking a lead right now for what appears to be your staging but that doesn't mean your Drs are using it yet or sad to say, even aware of it. Wishing you the best. The best lesson I learned was to live one day at a time, enjoy it and don't live it waiting for the next test result.
Thanks a lot for your input and guidance. The more I walk this journey the more I learn about this beast and the treatments available. The triplet therapy advice is certainly one avenue I'll be following up with my RO at my follow up appointment in November. I am in Australia and hope that he knows about and has that as an option and employs that approach. My wife and I are still very unsettled by the prognosis and over time we do have to learn how to live one day at a time and try and put any timeline to the back of our minds. I hope to not become a serial pest on this forum as we undertake this journey. Once again many thanks for your post we appreciate it greatly
I shouldn't have assumed your in the states my mistake. Not sure what the Australian equivalent of the NCCn Guidleines is called. I doubt the RO (Radiation Oncologist), other than debulking the prostate, will have much to offer on the triplet therapy and you would need a MO or Medical Oncologist. At least that's how it would proceed here in the US in most cases unless a urologist plays the lead roll. My RO stepped aside after my radiation and my MO is my lead.
Mal-W wrote --- " last Thursday via zoom call by my radiation oncologist that I have a prognosis of a 3 to 5 year lifespan ... " AND " ... The more I walk this journey ... "
IMO, you should take solace in the fact that you are only crawling at this point since everything is so new and as you transition into walking you will find that medical technology and the input from well informed HU Members will be proving " ... my radiation oncologist that I have a prognosis of a 3 to 5 year lifespan ... " to be an absurd statement.
Please chill a bit, proceed cautiously AND GOOD LUCK. 👍
p.s. - travel out of Country if need be
Someone wrote something here that gave me hope when I had little and needed it most, so I'm paying it forward.
There WILL come a day when you will no longer think about your cancer every second of every day.
That day will come!
Both treatments are independently beneficial in cases like yours. I'd do the triplet first (give it about 3 months) because it will shrink your prostate and make a smaller target for the radiation.
New Zealand the my oncologist immediately recommended triplet therapy whilst also advising that the Zytiga is not Government funded. Luckily I can pay for it myself.
Allen:Are there any published articles comparing Firmagon & Nubequa together treatment with Triplet therapy?
My Urologist told me to get my affairs in order, because I wouldn't be a patient in 3 years time. Got an Oncologist and he said no such thing. Going on 6 1/2 years and the end does NOT appear to be in sight. My Mo said there are about 5 new treatments a year so over 5 years that is 25 new treatments and there is a good chance I will live to see a cure.
Many thanks for your reply it has meant so much to my wife and I. 6 1/2 years and NO end in sight certainly appeals to us as a preferred option to the one given last week. As you know only too well the shock to the system of being given what you'd term a short life expectancy prognosis is difficult to hear and deal with. I am not yet up to speed with all of the abbreviations can you please confirm what MO is.? During my journey I will no doubt be posting more and hope that I can get to a stage where I'm in a position to help others. Thanks again it means a lot.
MO =medical oncologist. RO =radiation oncologist. SOC =standard of care treatment. URO =urologist. PCP =primary care physician.
These people are right. I'm at 4.5 years now and still have a PSA of .014. Mets in the bones. I think five. The worst thing you can do is stress too much. That is not good for the cancer staying away. Good luck and you will be around for a long time yet! BTW - I'm 68.
Great advice gsun. That's added incentive for me to decompress and chill out. Receiving all of the positive feedback since my post has certainly lifted the clouds more. Hearing all of the stories where people appear to be so positive even after being on their journey for a long time gives us hope. This is such a positive platform that I can see I'll become a regular poster and at some point provide encouragement to others. I noticed your post re depression and FWIW I went through clinical depression during the GFC and came through it stronger than before thanks to my Doctor, psychologist and a hypnotherapist. I was strangely thankful for the experience of depression in my instance because of the joy of recovery and the tools of how to keep it at bay. I certainly hope you find/have found a way through that black tunnel giving you the strength to fight the fight. My wife and I would like to thank you for taking the time out to respond it has helped us greatly.
Followed by darolutimide or concurrent with?
Hi Pickleballplayer, We are so grateful that you took the time to reply to my post. I have found out an hour ago that I have a follow up meeting with my oncologist on 8th Nov and will press him for answers/action on triplet therapy. I hope I don't become a serial pest over my journey. Thanks again.
I’m nearly 5 years in. My RO gave me 2. Triplet therapy is SOC Standard of Care. If I could go back 5 years I would have done Lu177 outside the SOC box. One way or another zap those mets early . Look into it. I’m doing Lu177 now and my RO probably would not give me a time line if I asked him now…. However he did say he was happy he was wrong!!
Wow you are an amazingly successful survivor story nobaday. My wife and I really appreciate your reply and your advice, it gives me further information to challenge my radiation oncologist with rather just faithfully accepting his choice of treatment. As a newbie can you advice what treatment Lu177 as I need to build my knowledge base. I find this forum so informative and helpful and will become a regular poster during my journey, hopefully not to the point of being a pest. Thanks again it means a lot to us.
You need to do a PSMA PET scan to make sure your Mets are PSMA avid with a reasonable uptake (SUV). You slso need to research Lu177 by searching this site.You also need to decide whether you want to pay out of pocket for this treatment. $6500 in India per infusion, $10000 plus in Germany,and Australia $20000 in Austria. I would recommend India!
And I would suggest a minimum of 3 Lu177 infusions or a combo with Ac225. There are only a few people who seem to have done Lu177 while still hormone sensitive but these ‘pioneers’ had great results and are likely still doing GREAT years later. There is much new research and clinical trials going in in this field particularly in Australia and Germany which were using Lu177 like 15 years ago!!
This is my first post regarding my husband’s July 27,2022 advanced metastatic stage 4. The past few months have moved quickly. PSMA showed oligometastatic with a few pelvic lymph nodes involved, 1 rib lesion, and T5 lesion. He had his first and only round of docetaxel sept 1, and on sept. 9th was admitted to the hospital for an 8 day stay with neutropenic colitis. The goal was the triplet therapy to hit it hard as he is 57 years old. Now chemo is off the table and he is on Zytiga + orgovyxx. PSA was 30 before chemo and now is at 1.8 so drugs are working. However, he feels like he is not taking action against it with just the orals and we have asked the MO if he would order Pluvicto. Of course, it’s approved for use once ADT no longer works- I saw your post where some hormone sensitive patients had Pluvicto . Have you seen any studies of its use early on ? Our thoughts are why do we have to wait for it to spread since there are only a few lesions at this point? Thank you for any information you may have regarding Pluvicto being used in a hormone sensitive setting- it was very discouraging for chemo to have been taken off the table, but the risk is too high to try it anytime in the near future.
Just a few people taking it outside of SOC standard of care. No clinical trial … yet to my knowledge… they only just completed the big VISION trial for CRPC who have had previous chemo. If happening happening likely to be in Australia where a few new radioligand trials are happening.
Yes why wait, side effects are minimal, particularly compared to chemo which is why I have avoided chemo so far… even though it’s SOC and has benefitted lots of people.
Hi, just saw your post. You've already been given wonderful advice.
The PCa Band of Brothers here on Malecare via HU are incredibly supportive💙
I just posted that I had my 8th Anniversary of a PSA at 552.2 on 10/13. 840.2 in 12/2014.
I had a huge median lobe PCa tumor on the front of the prostate. And metastases to the L ureter lymph node chain. That closed off urine flow and now have a L atrophied kidney
But creatinine and GFR are great.
Have had 37 chemos, almost 8 years of Lupron shots. Upcoming will be Radiation. PSMA showed no distant Mets, but huge avid area in prostate and into perineum.
Did a 10k walk around Edward's Air ForceBase today🚶😁
Feel free to scroll thru my posts
Here are a couple of links about my journey
blog.athlinks.com/2017/05/1...
spanishforcamino.com/2019/0...
Fight On
Randy
Hi Randy, Thanks for taking the time out after your 10 walk to provide feedback to me. Everybody is so positive and supportive with a wealth of knowledge and advice. Congratulations on 8 years also. Additionally thanks for all the links I'll be sure to go through them. If you don't mind me asking have you been free of bone mets during your time with PCa and if so does that affect the treatment options? As a newbie to this beast I am progressively gaining an understanding of terminologies which will no doubt help me to understand the paths to follow. Thanks once again for your positive feedback it has helped us no end. Agreed...fight on.
Docs are there to cure the disease , not to predict the life span.
When I saw docs...I told them that I need your know how to cure the disease.
Anyhow, my experience is that after the news of PC, first a shock drowned thru good wine, then take my health in my hands... patient power. My APC made me young again, I told docs that I became a student again learning the mechanism of cancer and health span and joy of life.
One has to change life style which may have caused the PC...bit genetic and more of rusty epigenetics.
Nutrition: no sugar, no fat, no industrial diary, meat and food....go vegetables and olive oil
Go for local grown organic food, these stressed foods have all the survival ingredients for healthy life.
Exercise....every day and do whatever you can do. Idea is to stress the system.
Intermittent Fasting : Since 6 months I am doing 16 hours fast, 8 hours eating window, but eat 3 hours before sleep. Again we are stressing the system to activate the survival genes. In our consumer society, our system is overly fed and has lost all survival pathways. People do not know what it means to feel hungry. Eat only when hungry, not addicted hunger due to sugar.
Mindfulness and choiceless awareness....I am not the body, so look at the PC calmly.
Then regarding supplements....a personal journey. As our nutrition is without any nutritive value due to industrial production, soil is dead, smells of money....
There is a whole new breed of young researchers and doctors who have a different look on medical protocols. which they call stone age protocols...
A new look thru the window of epigenetics.....and senolytics.
These guys understand well the working of cells with high tech tools which the actual docs know not.
When young, we are healthy.....
When old we get all diseases and old age is a curable disease
Because our epigenetic is all screwed up . One can reset it thru change of lifestyle.
May be soon thru clinical therapies....
Enjoy the Now...past is gone and future is always Mañana
Hi, no bone Mets! Latest PSMA scan showed no distant Mets and only a huge avid area in Prostate going into the perineum
Up next is an RO cons. Radiation Oncologist on 10/28 to discuss options
For bone Mets, here is one option:
cancer.gov/types/prostate/r...
My Best to you on your PCa journey
Fight on
Randy
love to hear your success that’s amazing .. 8 years and going strong is amazing to hear !
My friend that is a tough thing to hear! Doctors give worst case scenerio and it’s based of statistics which also contains a lot of people have many other factors / issues before getting diagnosed with this.
My dad may be in a similar boat as you were are still awaiting final results. I’m scared because who wants to friggin deal with this unfair bullshit. But after finding this forum I see so much success
You said your active and healthy .. this alone makes you a candidate to far exceeed this timeline. There is a guy that goes by Billy on another forum.. he got diagnosed with something like 3500 PSA.. yes 4 digits. And the prostate cancer spread everywhere .. spine, bones , lymph nodes, shoulders you name .. he’s already on year 6 or more and no signs of slowly down.
I wish you the best my friend and hope you have many years left on this planet
FormulaRob, Many thanks for your reply and I hope you're father gets some good results. We are now thinking a lot more rationally about the future. This forum has been a major factor in this change. If you don't mind are you able to tell me the forum that "Billy" is on as I'd like to read what would be his amazing story. Good luck for your Dad.
Thank you my friend . Here is the link to Billy on another forum. Sorry it was nearly 1600PSA and spread everywhere. That was in 2004 .. and he still going here in 2022. Link to his bio but A LOT more info as you get to his actual posts that he has many of.
I agree doctors give worst case scenario which most patients must have it. I remember my father doctor told us clearly 5 yrs max. My father left us at 4.5 yrs. no other health issue ever.
Our Oncologist said “ you could get run over tomorrow or have a heart attack!” He is correct. After the shock, comes change. Cut out booze, eat organic, very little organic meat. We are 5 years NED and he is 76. Zoladex and EBRT. Lifestyle changes have delivered so much good for us. Weight training, cardio, travelling are all possible. Do not despair. You could be 45 and be given the bad news.🌺
We really appreciate that you took the time to reply to my post. I have made significant changes to my lifestyle since receiving feedback from this forum and feel much less stressed and more positive than one week ago particularly hearing of stories like your's. I'm still coming to understand all of the abbreviations and terminologies. Can you advise what NED means as this wasn't on the PCa abbreviation list ?
Hi Mal-W . Don't despair! My diagnosis was very similar to yours, though with a higher PSA. Although the triplet therapy suggested by Tall_Allen wasn't the recommended when I was diagnosed, my treatment was very similar. Check out my bio to see my last 5 years or so of history.
I was told 2 years back in 2014 , still here still running marathons and ultra marathons . Apologies for pushing my book (I make a massive 50 cents per sale so its not about the money !) but I wrote my story last year because 1) I sa so many like me told bad news and it may not be that way and 2) so my kids know what it was like , highs and lows because they were only 9, 14 and 16 so I didn’t feel right to share everything (even though I told them the truth about the cancer ) . Books called Dead Man Running if you are interested.
Don’t worry about what May or may not be in time to come , as my wife says , if you wake and feel ok then it’s gonna be a good day ! In years to come you will never say “I wish I spent more time sad “ but you might say “when I felt ok I wish I went out more and did stuff with my family “
You choose
Hi Irun. We really appreciate you taking the time out to reply. You can add another 50c to your piggy bank as I will be purchasing your book. I've also viewed a lot of the videos that you've taken part in and have taken a great deal of comfort in the fact that there are guys out there that have met this head on in such a determined manner. You my friend are an inspiration and long may you continue.
ah thank you . When I wrote the book it was really for my kids as they were 9,14 and 16 and I worked hard not to share the rubbish that is prostate cancer with them (I did tell them of course that I had incurable cancer).
What has happened is that my kids now 17, 22 and 24 have never read the book (maybe when they are 60!) but so many others have with doctors here in the UK frequently suggesting people read it when they feel life is over on a diagnosis.
I hope you enjoy the read and like me have a go at everything you want to do . Take care and stay fit my friend .
Remember the stats are overall, you can be different. My personal mindset getting diagnosed at 45 years old is I’m making it 20 years +. Get the best team of doctors around you and get second opinions if needed as well.
Hi countrymusic101, We really appreciate the advice. You have reinforced the theme of all replies of defiance and determination.
Six years and still here, the doctor's have no timetable, keep fighting, never give in and never give up. Get a good oncologist that has your back and know the most up to date treatments. Good luck.
Hi Muffin2019. Thanks for taking the time to reply. Your advice is hitting the right notes with us. Keep well
Hi Mal-W
Doctors like to give pessimistic forecast either to make you feel good when you exceed it or for their responsibility’s sake.
PC will definitely change your life but by keeping balance and active there are still many years to enjoy.
I am now in my 5 th year and not yet resistant. My initial PSA was 240.
So I would believe your horizon is still beautiful. Raise your eyes. Adapt wisely to the change. Keep focus on your moods, excercice, love yours, pray and thank him for every minute in this journey
All the best
Hi. I'm a wife that follows this board and passes information on to my spouse. He was diagnosed 5 years ago with locally advanced PCa. I'm writing because of one of your replies to Tall Allen. You seem puzzled by your referrals to both Urology and RO. There's a lot of new treatments even in the 5 years since my husband was diagnosed. His PSA was 44 and he had 3 lymph nodes close to prostate involved- no bone mets. The MO started him on Casodex and Lupron in February 2018. Those are both anti-androgens. Three months later when those medications had somewhat debulked prostate, he had 39 radiation sessions. Your case is different because of the bone met. It's also different because of timing- you have a good option of triplet therapy as many have suggested. I'm just passing on this information so you know that it's not contradictory to be evaluated at this point by both an MO and an RO.
As a side note, the men on this site are very kind and responsive to posts by a patient's partner, as well as children who are concerned about their loved one and wanting to advocate for them. My best wishes to you, your wife and family. Mary
PS my husband's PSA has increased in the past 2 months after a 2 year break from ADT. He's in the midst of scans and will have PSMA this coming Tuesday. I know that I can come here with questions. That is comforting to me. I know it's not a time to panic regardless of the scan results because men on this board have taught me that.
I can feel your shock, felt the same! But after the shock we all start our second life. You’ve got a lot of advice alread, follow TA & Co, their advice is second to none.
What I‘d like to add is life style, life style and life style: Start CV training, whatever suits you most: walking, jogging, cycling etc. Start weight lifting today as you will lose your muscle mass from ADT. Then switch to a whole food plant based diet. Try to eliminate stress as good as possible from your life and maybe start meditating. I also believe in time restricted eating, doing 18:6.
You will get used quickly to all new habits and enjoy your new life. For any questions please don’t hesitate asking. We can also chat if you prefer. All the very best!
Hi Nusch, We'd like to thank you for your advice. I have changed my diet to exclude processed foods, red meat, alcohol and other undesirables and have increased my exercise routine. If you don't mind I'd like to send you a few questions via the 'chat' if that's OK?
Well it looks like you got a very authorative answer - nicely summed up by "screw 3-5 years". To me it seems that there are as many variations of this cancer as there are people who are diagnosed with it. Also for me it was important to ditch the immediate "how long have I got" question and reorientate my life around "how do I get the most out of this day". I dont call my PCa a desease - but a natural state of the body as we get older. When asked about survival I reply - "anything from 2 to 20 years". In 20 years I will be 92 and if - and I sure expect to have many full and active years behind me. So living with PCa - or living without thinking about PCa is what its all about- its every 3 months we take a PSA check to monitor how things are going - but besides that life is great - go for it
HI Mal-W, I was diagnosed with prostate cancer 8 years and 4 months ago with psa going from15 to31 in 2 weeks , Gleason 9, stage4, very aggressive and very adaptive. Had a radical prostatectamy with some lymph nodes removed that were cancerous as well, 2 years on zolodex and psa wentto 0.1 then the urologist took me off all meds to see the doubling time ( how long it takes for the psa to double ) in 6 months it was growing again so they put me on firmagon which was only partially successful so they added cosudex as well . I felt like shit a lot of the time and was glad to have a family or I might not be here now. At the beginning of this year my psa started going up again and my oncologist wanted me to do chemotherapy, I wasn't keen on that as I thought it was the start of the last lap and I thought it would make me feel even worse, I had been following some natural medicine cures and the oncologist said it had added years to my life expectancy. The alternative medicine practitioner I was seeing told me of a clinic in Thailand that treated cancer Patients and I went there . My psa was rapidly on the move up and reached 61 at the clinic before it started down, after 11 weeks at the clinic my psa went to 28 . After a month back in Australia my psa went to 1.6 and 3 months later is now 0.06. A psma scan showed there is still some activity in a met in my pelvis and the three mets in my back have little to no activity. It's been a roller-coaster of a journey but it looks like I'll get a few more years. Things I've learnt on the way, doctors are only human and make mistakes, get a second and perhaps a 3rd opinion. Do your own research, read a book by Jane McClelland called how to starve cancer, pubmed is a good resource to find the latest research , the clinic I went to is Verita Life in Thailand, it cost half my super but my wife and family said they would rather have me than the money. Diet is extremely important There are no guarantees in life but it is important to do your best even when you don't think there is a way forward because there is always hope. There is a lot more to my story than what I have written but this is the bones of it.
I wish you well on your journey
Mal-W, I recall when my surgical biopsy came back and I sat with my Dr looking over my Decipher genome score; my GS grade was mid range in staging, but the decipher came back a whopping 0.97 out of 1.00. Basically, my 4-3 turned into a 5-5 on the genomic scale...it told me I had 60% of MET (metastasis) in 5 years and 30% of death in 10...but, that was if I did nothing...there is the key.
You have started on ADT; see how that works and if it keeps your PSA low then your cells are not growing...it kills androgen dependent PCa cells, not not the entire clone of cells that make up your tumors...so the fight has just begun and I would not despair, not at all...there is a lot you can do and you have started with the first, most important thing; study and know your disease. You are your best advocate; do not leave your health care to your Doctor...they are not doing anything wrong, but they are swamped and tend to practice medicine like a kid does Wacka-mole at Chuckee Cheese...you dont want to participate at that level if you dont have to...lots of stuff to consider...
I recently wrote up a uber list of 'what would I do differently if I had a chance to,' and posted it on this forum. You can find it and all the other tirades I heap on hapless readers at this LINK...you may find some research there that may help. #1, #2 and #3 to remember is that you are driving this car...your not in the back seat. Always and never forget that...
...#4 erectile health...I know this is the absolute farthest thing in the universe for you right now; I remember as well I did not give it 2 seconds thought at first...but you will do better than you think, you may last much longer than the experts say and you will need to think long term about your body, your whole body...in the next 6 months ADT will do a number on your penile tissue; know what is coming and do what you need to do to preserve your future! Dont give up on eventually beating this monster, living with it and later enjoying life fully...dont give up Brother...never give up...TNX
healthunlocked.com/user/RMo...
PS if you have not had a PSMA PET get one A.S.A.P....do NOTHING until you have that image...then if you have not the tumor tested via genomic methods, so that next; decipher is my choice...see the link for more ideas...come back if you need more...TNX2
Hi Mal-W. Unfortunately, as you are in Australia (as I am) you will not be able to avail yourself of the triplet therapy that others have recommended. It would be a good plan, but it's not available on the PBS .
You are taking an ADT (Zoladex) and you can, and should, add chemotherapy (Docetaxel) soon. Both are available on the PBS for HSPC (your stage PC) and both will be very effective in knocking your PC and PSA down significantly. The chemo will usually be 6 sessions 3 weeks apart. Don't be afraid, the side effects are very tolerable and definitely worth doing.
Recently the PBS approved some of the 'third' of the triplet therapies: apalutammide and darolutamide but only for nMCRPC. So at this point being already metastatic you would not qualify even when sometime in the future you became castrate resistant. I'm in the same position. On the other hand both Abiraterone and Enzalutamide are available on the PBS for MCRPC.
The ADT I'm on is Firmagon (Degarelix) which is an antagonist. Zoladex and other ADTs available on the PBS are all agonists. Firmagon requires a monthly injection which some find difficult, but I stick with it because of the known benefits of an antagonist over an agonist (CV issues, knocking out FSH). I suggest you research the differences. You can switch if you want to.
I'm still here almost 5 years post Dx with many more mets that you and a starting PSA of 168. I'm doing fine and I expect you will too for many years. There are also other treatments possible beyond those I mentioned above and many trials ongoing so there will be more available in the future. There's much you can be hopeful about.
Two other possible treatments that would apply to you given you are oligometastatic : SBRT (a form of directed radiation - not a lot of treatments required - need to get approval from a radiation oncologist ) to the few mets you do have and Olaparib which has been trialed and proven to be beneficial for those in your position (HSPC oligometastatic). It's not on the PBS, but maybe you could ask if it could be available on compassionate grounds based on the results of clinical trials.
Hope that all helps. Cheers.
Mal. 6 years ago I was diagnosed with stage 4 and given a 50/50 chance of 5 years. I have done everything the doctor has asked all the way through. That being said, my semi annual Ct and MRI are today with the reading tomorrow. Hopeful that the cancer is still stable and he tells me all is still well. I have spent my time here staying close to my kids and grand kids. Making my final plans and buying the plot ( in my case starting a family cemetery) . But 3 years ago I started building hot rods and old trucks, a passion from my youth that I had to give up due to being a adult bread winner. Dying is always ion my mind but getting up and working on my old junk is what I live for. Not to say loving my lady first. Never give up 🙏🙏🙏
G'day Mal-W
I started out my journey in May 2013 with my prostate fully involved and both seminal vesicles also involved. My PSA was 9, and the biopsy revealed cancer in 11 of the 12 samples taken.
My urologist at the time did not give me any options but Radiation therapy. ( I should have picked the warning signs then, but I missed them)
Fast forward to February 2018, my PSA was back to 10 and I was stage 4, with mets to both sides of my pelvis, both collar bones, T5 vertebra, and right 7th rib. I also was given 3-5 years to live, and I must admit that knocked my wife and I around for a few days, until I came to realise that I was the one who was in control, and ultimately the doctors estimation was little more than an educated guess.
I found an excellent Medical Oncologist at the Royal Adelaide Hospital, Dr Hsiang Tan.
By whatever means, he put me on Zytiga with 6 monthly Triptorelin jabs.
Within 4 weeks my PSA was down to 1, and a few months after that it was down to .05, where it stayed for about 8 or 9 months, before it slowly started to climb again in increments of .01 every couple of months.
I have been on Zytiga ever since and my PSA is still only 4.1.
I had a rapid spike in PSA earlier in the year when it got to 5.33 after we tried Dexamethasone instead of prednisolone.
We went back to prednisolone and my PSA dropped b y 0.5 in 4 weeks.
I have tried to stay as active as possible, and this will be my first fire season not on a fire truck.
And, yes, Zytiga does have side effects, but I have been able to adapt, except for weight gain. Tried to diet but suffered from Hypoglycemia (low blood sugar) so that made dieting difficult.
Sorry to rabbit on so long cobber, but what I am trying to say, is don't give up. Stay positive, active and keep your lovely wife involved in everything on your journey, because it all affects her as much as it affects you.
Find a good Medical oncologist and Urologist, and even a radiation oncologist, You will have a team on your side to help you with your decisions.
Finally, read up on as much as you can about this insidious bloody disease we are going to have to live with for quite a while.
Remember cobber, that in Australia, most of the expensive prostate cancer drugs are available on the PBS to pensioners for $6-80 per script (instead of the full $3446 per script for Zytiga for example).
Get in touch if you would like to ring, I am only too happy to have a chin wag with you any time of the day or night.
yo.
maybe it is 3-5y???
if so what will we do with that 3-5???? I'm 49.....
clocks started!
you done great finding this site quickly, I got caught in some pretty hopeless and dispairing websites looking for guidance....
For me not looking at a long stretch of clinging on to life for life's sake(like holding on to the hand rail of the wrong side of an escalator) but finding acceptance, quality, enjoyment, happyness with what'sleft on offer.....
hope you find a path.
ps, make sure your wife/partner gets support, you still buy her flowers,
Hi Mate i live in Sydney eastern suburbs.I was diagnosed with prostrate cancer that had got into the blood stream into the lungs and bones.I had a PSA of 370.Like you you fit and healthy, never been in hospital.Also i am 73.I was started on Hormone therapy 9months ago .I just completed chemo 4 weeks ago (6) rounds.Now my psa down to .1.will see Dr Anthony Joshua from the Kinghorn Cancer Centre in Darlinghurst in a weeks time to see if i go onto Zytiga or another medication.I was told i had a very good response to the treatments.Do not worry about time frames.If you want to stay in contact let me know and stay positive.During all this time i have worked and ,kept a good diet with light exercise.Regards Brian
Mal-W I have posted you a private message
I started down the same path you are on 13 years ago. You will come to many dead ends and forks in the road in your journey. Study extensively, do your own research and most of all, be your own advocate. Get second opinions and don’t hesitate to change doctors, it’s about your life, not theirs. Work on getting your stress and mental outlook turned in a positive direction. Lose weight if needed. Exercise and eat a healthy diet. Find peace within yourself and savor every day as a gift. Godspeed and decades of life ahead for you.
My diagnosis was as bad or worse and I was given the same life expectancy back in 2014! You can read what I did for treatments in my profile. Time to learn all you can, and get with an oncologist who specializes in prostate cancer that is very important, even if you have to travel to see him/her.
Ed
RO, Radiation Oncologist. MO, Medical Oncologist. Don’t let the word oncologist confuse you. With metastatic lesions, you should have a MO managing your treatment.
Case in point. When I was first diagnosed with prostate cancer by a Urologist, I decided against surgery. I moved on to the other primary treatment guy for radiation. A RO. When I developed metastyleadoon to me spine, the RO have an injection of Lupron and told me that any physician could give ADT.
I asked what he would do if he was on my she’s with advanced prostate cancer. He replied that he would find the best damn medical oncologist available; someone who us on top of their game, a professor who teaches and researches if possible. recommended a MO
So with a PSA 32.4, and two metastatic lesions to my spine in 2004, my cancer treatment has only been through my MO. I am 75 years of age today.
My first treatment with the MO was in a clinical trial, chemotherapy with ADT.
All the written stats on longevity in 2004, with men like me said, 3 to 4; maybe 5 years. Get a medical oncologist on top of their game. You will find them in the larger cities, not in the small towns. Travel if you have to. You will do fine.
GD
You case similar to mine , September 2013, I’m still here with more than 20 mets to bones. Quality of life was my priority all the time. good luck that you have many years live.
HiMal, Look up my bio. Late 2016 I felt crook. My psa was 9000 and I had Mets in every bone including head. Life expectancy was 2020 if I was lucky. 5 months later psa <0.001 and Mets in lymph nodes gone and Mets in bones barely evident. Now psa steady at 0.15 for last 10 months. I feel well, sleep 7 hours every night without waking. So there is hope. Family love, attitude and exercise obviouslyhelp. 61 years married.
No chemo, no radio, no biopsies, choice.
Keep the chin up.
It’s important to perform a NGS in order to know your mutations, it’s easier to have the best sequence of medication afterwards.
my husband at 73 was told by one of the top cancer doctors at Memorial Sloan Kettering the average age to live for a male is 80 and he wouldn't live to be 80. He gave him 5 yrs that was until he repeated biopsy of tumor found he had a rare mutation, put him on keytruda and psa undetectable for 3 years. Now if the same doctor would be asked he would say he doesn't know how long he will live because he doesn't know, better answer. I Doc Googled at first Gleason 10 psa was low mets wasn't good so finding this group you are in good company. I wish you many many more years, the human spirit is much stronger than any
Yeah the urologist said the same to me. Here I am 10 years later. Lupron, Xtandi basically and lots of supplements.
my suggestion is to focus on enjoying every day you have left. To maximize function and happiness you might consider intense exercise and weight lifting. It will minimize drug side effects and allow you to feel you are doing something to fight back. With the way medicine is advancing who knows how long you will live.
Mail-W,
You will find many of us have beaten the time lines given us. You most likely will be doing chem at sometime. ( it’s not horrible). I will be celebrating 9 nine years at stage 4 next Feb. been a rough road sometimes but having. A strong partner is also very helpful. Lastly find a Cancer Center of Excellence near you . You want to work with Docs who function as a team .
JackPine
Of excellence
I went to a urologist even after my diagnosis, it seems like weeks before they would start ADT even though that's the basic treatment. Their radiation oncologist advocated for RT, but because of the lack of one physician taking control I went to MD Anderson. (I'm a cardiac nurse, what did I know?) They were the Godsend, them and this board. It gave me the updated SOC and I had chemo, radiation and started on Abiraterone in sequence. Find a good MO and let them run the show. The rest are the supporting staff.
3-5 years? how irresponsible. When I was first diagnosed my doctors wouldn't give a time frame for survival. Instead they said, "each case is different, and treatments are more advanced now than ever before, and improving all the time" 3-1/2 years ago I was diagnosed with Stage 4, aggressive metastatic prostate cancer with widespread bony metastasis, bone marrow involvement, pelvic lymph node , and metastasis to both lungs, with Gleason score of 9 and a PSA of 629.
I've responded well to ADT + Zytiga and prednisone and by all accounts have several years ahead of me.
The latest official statistics for stage 4 cancer patients is 70% die within 5 years this is from 2018. Individually cancer effects people differently. Some may live 20 years with treatments and some will live just 10 months from diagnosis. I know some people cite new treatments saying it greatly expands life expectancy but then you dig deep into the studies and some extend life by just 3-4 months on average or the study is flawed by excluding certain types of patients. People are naturally curious about how long they have left to live and really all a doctor can do is cite the latest stats and should qualify that every case is different. The best you can do is keep up to date on the latest treatments and advocate for yourself. You'd be surprised on the number of doctors who are set in their ways and don't keep up with the latest treatment options. So yes todays and tomorrows treatments could have better outcomes so keep up with positive thinking but really you should be living each day as it could be your last. More people die in car accidents than from prostate cancer.
8 yrs this month, and still kicking, you will get use to it, best of luck to you my friend
I’ll ask a contact currently on triplet therapy to confirm, but found this with a quick search, which if I read correctly says they’re all at the same time.
Conclusion: Our results support a clear survival advantage of adding an ARSi to ADT in mCSPC patients treated with docetaxel, mainly when the ARSi was administered concomitantly to chemotherapy and in the subgroup of de novo mCSPC.
hI sorry to hear what u r going through...I went through the same thing...I'm free today of the beast...6 years now.
u can call me at 2013629062 if u want and I can tell u what I did to save myself....I also had a bone lesion and another lesion I. Prostate bad...both gone today.
Hi Mal-W, your doctor is reciting old statistics. Just a rote reply that he, probably, doesn't believe. In any case it is wise to get your final affairs in order now, while you aren't in ADT/Chemo fog.
As for life prediction: in 2014 I had Gleason 9 (5+4) with extensive mets throughout my ribs, spine and pelvis. My oncologist at the time said: "5 years, mayyyyybe 10, definitely probably not 15." Then he explained that the studies this information was based on was over 5 years old and so did not reflect a) the impact of those who were still alive and b) more recent developments in treatment.
Last year an oncologist told me I had 1 to 2 years. I just stared at him. My new oncologist is only looking at treatments available to me and has no opinion on life expectancy for this very active 73 year old with little to no pain.
All I know is that eventually I will die. From what, who knows? But I am prepared, document wise, and I hope that when the time comes I can pass at home in my own bed (or instantly in some accident).
One thing to get through your panic is that you are now free! No worries about what others think or if you look foolish doing what you want! The fear of judgement of others is of no matter now that you have a literal expiration date, which you will, in all probability, live well past.
Attack that bucket list with gusto! And exercise. And avoid stress, so stop watching cable news. Concentrate on things that make you happy. Be happy, it is a conscious choice you can make.
Really helpful list. thanks for posting.
First thing. You are NOT a statistic. Second, a great attitude can only help so keep your chin up. 3rd. get yourself in the hands of a good medical oncologist. From what I see, you have way more than 3-5 years given the advanced treatments of today. 3-5 years was based on old data. Take a deep breath, live each day to its fullest and stay positive!
I was Dx'd in Canada in 2016 with stage 4, Gleason 8, PSA 20, one bone met and likely lymph node involvement. I was given the same long-faced prognosis as yours. I was basically offered palliative care. I felt I had been misled and by various "experts" and, motivated to go to war, I was lucky enough to find a person who turned me on to a prostate cancer center of excellence in Florida. There, I received aggressive treatment with curative intent. I've been in remission since then, with undetectable PSA. I'd suggest to seek out second opinions from Pc a specialists who have proven track records of excellence. I expect you will find some in responses here from fellow warriors. Best of luck, and please don't despair.
Mal-W, I asked this question of my doctors when I was first diagnosed. Two refused to answer. When I asked the third doctor why no one will give me an answer, he said "because they cannot know until the very end and even then it's a guess". He then said I can quote you median numbers if you like but everyone is different. Keep the faith brother. When I worked in nursing homes as a young lad, doctors often wrote GOK under prognosis in a residents chart. It simply means God Only Knows.
Hello Mal-W, You say at age 69 you found out you've got cancer, right? So, ask yourself, When did this cancer start, yesterday, last week, a year ago? Ask yourself, how long have I been living, "young, healthy and fit" with cancer? The answer for me was probably 10 to 20 years. So, you have been fine for years not knowing you had cancer! I just turned 85 and guess, I have been dragging this cancer around for a couple decades and didn't know it. The cancer did not kill me before I knew about it, and it has not killed you! You sound a lot like me, with a strong body and a great immune system. Like the others say get yourself some good doctors and get the best treatment. I'll check in with ya in a few years, to see how you are doing. The best I heard is you will die WITH cancer, BUT not from it. Cheers Bill Weismann ( lopwillie)
Hey Mal-W, fellow Aussie here. Can I suggest you make contact with the Prostate Cancer Foundation of Australia (PCFA). They have amazing resources including specialist Prostate Cancer nurses who can answer most of your questions and refer you to local resources in your area, including support groups in all states.
i was diagnosed with stage 4 multiple bone mets Gleason 8 and 9s across the board. That was five years ago. I'm still going strong and living life to the fullest. I don't know how some of these Doctors put an expiration date on you especially with so many treatments now available to us. My suggestion get another Doctor with more knowledge and compassion. My Doctor literally saved my life and his team are the best. ADT treatments since first month PSA 0.1 . Leo2634
Hi Mal-W,
My husband Bob has had PC since 2005, in 2014 Bob was diagnosed with 5 metastases on his spine and possible lymph node involvement, started intermittent ADT which worked until May 2017, when metastases diagnosed in lymph nodes, Bob then started on continuous triple ADT and his PSA is still undetectable. Bob is very healthy and leads an active life, so we definitely wouldn’t accept this 3-5 year time limit, and are expecting to continue keeping the PC in remission for many years to come. God bless you and your family.
Dear Mal no one can truly say how long we have left just forget the facts and figures. My husband got 3 months with pancreatic cancer but hes still with me.30 years on.Helping me get through my journey first of a brain tumour & now ovarion cancer incurable but l say enjoy life enjoy the things you always enjoyed. We are on holiday in Tenerife we make the most of each day we are always positive its the only way to survive l asked the question and was told 1 to 3 years but its 5 years since l started this horrid journey yes lve had my ups and downs but more up s than downs thankfully we can do this stay positive dont check things on Google read the amazing brave men ,& womans stories on this forum it certainly gives us all hope for the future . God bless you all and please if your not happy get a second opinion it can make all the difference in your recovery. SheilaFx
find a good MO. With todays treatment options you should go long past the radiation drs forecast.
Hi Mal-W, welcome... as you've read (below) our life expectancy isn't in the hands or minds of other's. We should prepare for the worst, hope and pray for the best.
Like you I am a newbie at this too, and at 67 yo this is becoming my new normal. At first i was angry at my Dr for not flagging me with a PSA of 85. He called me a year later after a blood test showed 1499.. that was 4 months and a different Dr ago.
2 weeks later I was informed I was Diabetic, 4 weeks later I had 2 minor heart attacks. And all of my life I walked / lived the straight and narrow, and was in GREAT health!
Fast forward to today. I see that there are some incredible testimonies within this forum!!!! This gives us a peace for today and a great hope for the future, wouldn't you agree?
It's a BIG world and we're all in this together. Myself, I am a man of God and am at Perfect Peace about all of this. With the exception of finalizing a property transfer to my kids, my affairs will be in order, a good thing. While today is still called today, there are some big things I want to accomplish in this life, so I give it my best.
Brotherly love to you and yours,
Steve L.
Oh, one more thing; you can probably get some of your expensive meds free.
The neutropenic colitis shut down the intestines(ileus) and for a few days we were having surgical consults with possible obstruction. It was very touch and go and he is still dealing with GI recovery 6 weeks later. According to MO, he is the less than 1% that had a severe reaction to the taxane therapy- so that is why other things will be tried before going down that road anytime soon.
thank you so much for your input ! Your advice makes perfect sense to let the initial, very emotional phase to not be our guide for making rash decisions too quickly . The drugs are working right now - thank you for the prayers!
i think 3-5 is what it used to be .i am in a similar situation and after rp ,f-18,rd and 2yr adt i lift weights 3 times wk and chase elk ,4 years after stage 4 , G9, lymp. & pelvice spots.
3 to 5 year is median life span for these patients. There are multiple example of person surviving much longer than that. Each individual has a different story to tell. Your survival depends on multiple factors which includes biology of your cancer, how your cancer is responding to the treatment and what are the treatment options you choose. So don't be disheartened, hope for the best.
Sorry brother, I am in a similar boat. Been should searching a lot this year w the list. Take care man.
Mal-W
That radiation oncologist gave you a prognosis that is not even close.
Your tumor burden seems pretty light, and your PSA is low enough.
I'm not a doctor and would never set a deadline, but take his prognosis and triple it.
If you do wish to talk, my number is (401)624-6415.
Get to a renowned cancer center. I go to Dana-Farber in Boston.
Keep fit - very important. Also a healthy diet.
The two of you plan what to tell the kids.
I'm going to take license here and include a blurb about me.
My Journey
I have terminal prostate cancer, but I would like to share how my emotional relation with cancer has progressed.
Phase 1. Denial, Anger, Bargaining, Depression, Acceptance.
Acceptance is now so far in the rear view mirror as not to be a factor.
Phase 2. Peace, Love, and Joy.
I am so grateful for my wife and all therapists, doctors, and staff. Through their ministrations I have been given, and continue to receive, Peace, Love, and Joy.
Phase 3. Giving Back.
Using the knowledge and empathy I have gained, I have been able to make some supportive comments to other patients and care-givers. This incentivizes me to keep learning. Not much time for novels or Netflix. I get pleasure from learning.
Phase 4. Soul?
I no longer regard cancer as an existential threat. I know it will take my body, but I begin to feel that there is another essence it can’t destroy. I’m beginning to understand the concept of soul.
I will still fight cancer with all the capability I have and all the help I can muster. But I regard it as a job, not an existential threat.
For all cancer patients, God Bless Us, Everyone
my husband was diagnosed in 2004 and had 3 options. He chose RAD. They said it was outside his surgical margin. So we are into 20 yrs plus 🙌🏼🙌🏼🙌🏼. So many new procedures that have been approved and much research in the pipeline! No one but God tell you the amount of time you have left! Remember every day is a new day!
Please tell your sweet wife to look for a support group or I would be happy to listen to her and let her know the feeling I have had, frustration, fear, anxiety and how I have lived through it. Caregiving is a blessing and it is tough , because she love you so much she can’t imagine her life with you change!
Sending prayers!!!
Mary
Hi
I am in Sydney and attend St Vincent s hospital in Sydney.
Quick rundown i have 4+4 in the bones and lungs I was originally put on Hormone therapy and then followed up with chemo six rounds .My PSA went from 374 down to 0.008. I am not on any other medication at the moment.4month ago it did rise a little.I will see Professor Anthony Joshua in 3 weeks he may decide on other treatment .I am also due for a PET Scan.
Do not panic stay positive keep active .There are many new drugs and trials out there.It will depend on your genetics.I just turned 75 and have a first aid business and depending on how busy i am work 2 to 5 days a week.If you need some one to chat to leave a note.There a few experts here and not a bad idea to get a second opinion 3 to 5 years is just a figure .There are guys here a lot worst than you who have had it for 15 years. Regards brian
Hi Brian,
Thanks for taking the time to reach out to me. My initial post was 18 months ago and your recommendation of positivity has been a common theme amongst all respondents. I have taken that to heart and also exercise regularly. I immediately changed my diet and life has been good since then. I've gone through radiotherapy, Zoladex and I'm now on Eligard. PSA did drop to 0.1 but has risen to 0.5 recently. I have an appointment this friday with an MO @ Peter Mac here in Melbourne following a recent PSMA Pet Scan and will no doubt find out if they will offer me anything different from their bag of tricks. I have noted your comment re 15years and I'd be more than happy with that. Good luck with your ongoing treatment and once again I really appreciate your feedback.
Regards, Mal.
Apologies i did not realise it was an old post .Sounds like you are coping pretty well. Keep well
Only four months ahead of you on the journey, but here’s what I have learned. Working out—lifting, walking, whatever you like to do—is critical, even as you figure out your treatment plan. Don’t wait! It’s the best thing to combat the side effects of the treatments. It will also help with your mental health and give you some sense of control when you feel like you’re losing it. As you can see on the forum, many guys are doing well. Your mindset matters!
Please do this;
Next time you see this ‘doctor’, write out and hand him a contract that states if you life longer than his five years he agrees to pay you $10,000, and ask him to sign it. If he refuses, you know he is only guessing and parroting old statistics. Then change doctors! Ask him to point out your expiration window printed on your body.
He has NO idea when you will die - none! He may not even know what newer drugs/treatments you may take in the future that could greatly affect your cancer and longevity. I hate these guys.
FWIW, I am 29 years post diagnosis, radical Prostatectomy, SBRT to recurrent abdominal lymph nodes and still chugging along! Expect many more years!
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