50 yrs old. Just got diagnosed with prostate cancer. Gleason 9. Spread to pelvic and vertebrae
Took first casadex pill today. Will do injection (turpa I think) within 2 weeks
Pretty down as you can imagine because of words like incurable!!
Just saying Hi and will start checking out the site and posts. Hoping to hear some good news stories instead of the "death sentence" feeling I have. Awfully dramatic I know and I apologize 
The good news is that triplet therapy improves outcomes:
prostatecancer.news/2021/05...
If the number of bone metastases (on a bone scan/CT) is less than 4, debulking the prostate is also beneficial:
prostatecancer.news/2018/09...
Thank you for the reply. I will check it out.
I sure hope it shouldn't matter but want to make sure all understand i am in Canada in case it matters
I'm pretty sure Canada is onboard with triplet therapy and debulking.
I’m in Canada and got the triplet therapy in March 2022. My PSA is 0.01 and I exercise and stay active. Feel good. Had 6 sessions of chemo, take Zytiga and prednisone every day and lupron injection every 3 month.
I’ve been reading the triplet therapy results for awhile now. It’s widely available. Why then do we see numerous people coming to this site with doctors who are resisting this proven therapy? It’s gotta be malpractice. Are they idiots, ass holes, ignorant or stubborn? It’s shocking every time I see you having to send these people your blog on the subject to give their doctor.
Schwah
Yes, it is sad. I think some MOs just don't keep up with all the changes. To be fair, there are a couple of controversies:
(1) The two trials used docetaxel as a control- would they get the same improvement vs abi/daro? My best guess is it's still a significant improvement (as shown in my blog)
(2) There is a clear benefit for those with multiple metastases, is the benefit still there for oligomets? The oligomet subgroup is far from mature, so it is hard to give a definitive answer. The answer comes from research principles of subgroup analysis - when subgroups are immature, our best answer is always the total (see discussion in blog).
A zinger for sure YZinger.
Education is your best friend right now. Take a deep breath and revel in the fact that little pill you took is giving the pca cells a very difficult time even as I type.
This will give you a chance to learn and help guide you over the next while, until the shock wears off.
My one piece of advice from a guy diagnosed at 52, remember that much of the experience out there is for men 15-20 years older than you.
Push your docs to be aggressive.
If you are physically active, stay active. If you are not physically active become physically active. Get a tracker like a Fitbit Charge 5 or a smart watch like Apple Watch (waaay more expensive). Get to the gym 3 days a week, walk 10000 steps a day (about 4.5 miles, 7.2 km) when you can. Break the walks up during the day so not all at once. They will brighten your mood and help you think.
I am not going to try and provide false hope here but there are alot of treatments that when used in combination have the potential to make what you have be more of a chronic condition that can be controlled for a reasonably long time. There are men here that came in pretty banged up worse than you more than 10 years ago and are here dishing advice. Its not always like that but it is like that more often than you might imagine
One thing for sure I would ask about is genetic testing. If your PCa exhibits certain rare traits, there are very effective treatments available to you in addition to the standard of care (SOC) most everyone else receives.
This is such good advice!!! Fight as hard as you can while you’re young so the habits are ingrained as you age.
Do your homework. Your doc will only know so much. Ask good questions: make suggestions based on sound evidence and data: remember that the doc is your partner- (s)he is working for your health, but will likely never be as invested in you as you.
I wish we’d gone right to an oncologist once the urologist detected cancer…..
BTW: My Joe was diagnosed in November 2009: didn’t metastasize till November 2017. Getting tougher to beat it back each year, but it’s been nearly 14 years.
Thanks for reply. Does metastasize mean moved to bones?
I don’t know the formal definition, but he has masses seen on CR scans that he didn’t have before. A few in his right lung; one at the base of his spine and maybe 2 or 3 where he fractured left back ribs in a fall this spring. Each of these lit up on a PSMA PET scan, too, which is why he’s getting Pluvicto now. He’s has surgery, radiation, chemo (2 rounds, 5 years apart), Lupron, Casodex, Zytiga, Nubeqa….
First, my condolences, Yzinger. This stinks.
You'll learn the lingo, but yes - metastasis is whenever the primary form of cancer (whatever it is - prostate, liver, breast, etc.) has spread into a different tissue type. A lot of great information and support here - you are in a sympathetic and knowledgeable group. Just remember that your experience is singular.
For my 49th birthday, I was gifted a similar diagnosis, Gleason 9 with lots and lots of mets. I am reaching my 7th year post-diagnosis with a lot of treatment behind me and more in front (e.g., I am scheduled for Image-guided radiation therapy (IGRT) for a tumor in my right scapula in a couple of weeks).
A note on therapy. I've learned that I just need to educate myself on the process, consider whether this is "for me", and show up. It's hard not to be confused. At the end of the day, we are not doctors here. We are only experts on how things make us feel about benefit/risk. This includes looking at treatment mechanisms, statistical outcomes and side effects in order to make a decision on whether it is for us. But all of this is still "a feeling." I've seen many men try to mask "a feeling" as some sort of intellectual breakthrough.
I use my homegrown "ACRE" acronym to keep track of treatments (see: cancer.org/cancer/types/pro...
Androgen (i.e., Testosterone) suppression. This is forever treatment for us with a host of different therapies with the same goal, i.e., to deprive our cancer the testosterone it needs to grow. It's the (crappy, IMO) foundation of our treatment.
Chemotherapy. A systemic therapy that preferentially kills rapidly dividing cells like cancer. Under this category I place "targeted therapy" like Pluvicto because I've had it: It was a drug that was infused into my system, and it still had the same side effects.
Radiation. Speaks for itself, but its goals can either be for tumor suppression or palliative relief (tumor pain).
Extras. Ah, this is where it gets interesting. Genetic testing. First line immunotherapy like Provenge. Lifestyle changes. Studies. Pursue them with as much vigor as you would like, but remember that they are indeed extra, i.e., an "extra" does not take place of focused treatments above.
My only recommendation for you at this time is to start developing a flexible perception to keep things from going off the rails: This is a fight within a journey within a life. I have found that they are related, but different. Each has its own scale, focus, and priorities.
Feel free to reach out at any time - in general or to an individual if one of their experiences seems like something you'd want to follow up on. There is a private "chat" function above. Good luck, brother! - Joe M
Good Morning!I just saw your reply regarding genetic testing. I have a question that's been rolling around in my head for a few days. If father died of aggressivePca 18 months after diagnosed (age 65.5) then two sons later diagnosed at exactly same age 65.5; one chose RP, the other too late, dealing with multiple mets. Genetic test results says it's NOT the genetic variant.
We're dumbfounded, however plan to advise all our sons (x5) tested nonetheless, all now in their late 30s & 40s. One already has BPH ~ PSA 14 ~ Age 47.
Make sense?
Thank you. Funny you mention genetic testing....the Urologist also mentioned that but in those moments i thought that just meant maybe my dad had it, his dad etc...sounds like there might be more to it than that....I am physically active and a very positive person so hoping that can help.
Funny story, the same day I learned of this diagnosis I closed on a peice of land my wife had wanted for long time. Its those type of things that really make me angry (not at anyone, just the situation) - but hearing of others living for several years sure helps.
Once I was referred for a biopsy I had accepted that I might have prostate cancer - and I transitioned to welcoming it as challenge to beat....but with this spread I no longer feel that way - like I cant beat this prick!
Genetic testing of the tumors themselves to see if they contain one of a small number of features that allow your dr to treat with immunotherapy drugs like Keytruda to great effect. The features are rare but if you have one the results can be stunning.
I was Dx'd about May/18. Closed on a piece of land in Aug./18. I worked for two years and built our dream house on an island where we have lived since. I had the attitude that I was building it for my wife after I was gone. That still is true but five years later, I'm still here! Since then I built a smaller house on the property for my wife's sister. Gives me great comfort knowing she will be here for my wife. Now that all that is done, I'm just enjoying life and not letting cancer run it. Keep busy and the clouds will clear.
Get a MO that knows prostate cancer in particular. A Uro can only do so much. Mine was an idiot (those are my GP's exact words too) and I moved on.
Speaking of beating this "prick", you have to get the info on keeping your penis in shape just like the rest of your body. It needs exercise even when the drugs say no. Do your research on it. And remember, the desire for sex is not only in your little head, but in your big head. Get used to it and you will be fine! I don't know about NS but in Vancouver, we have a prostate centre and there is a supportive health centre within it. One of the services is a sexual health support centre.
Keep your sprits up. You will be around for a long time!
The above reply sounds like good advice, exercise, diet & mental attitude all are very important now for you.
It shocked me when I was told the same thing & looking at a line drawn on a blackboard was a D at the end, like an idiot I asked what it was. Shock horror, I was going to die. 12 years down the track I am still here.
You are just entering a new phase of your life so learn all you can, survive & fight on!
You folks are amazing. Thanks so much.
so sorry to hear about this. You are very young. Where abouts in Canada are you located?
Nova Scotia
As others have noted above, it is normal to feel shell-shocked at this moment. I sure did. Learning about PC and treatments from this site and others will help you gain perspective and see options that you do not see now. Hang in there, and buckle your chin strap for a contest with lots of ups and downs. You have lots of teammates here.
Some great advice above..the only thing I would add...if you haven't already, bring in an Oncologist to your team. Even though you may trust your urologist completely, you need that oncologist perspective.
Yep seek out a Oncologist forthwith. If not sooner.😜 Better still, seek the top cancer treatment specialist centre, you can. Diet is key. More than anything I believe. Cut down/out booze, any processed foods. Eat cruciferous veges. We are 6 years on and travelling like there is no tomorrow! You are going to be ok💜
My husband was diagnosed at 50. First step was get an oncologist on board and go for aggressive therapy as he was fit and young. He has since had triple therapy and then radiotherapy to prostate. He tries to exercise as much as possible, has cut out meat and dairy. Good luck to you,
Listen to the guys that are able to fight through the fatigue of the drugs with exercise. You have a long time left to work in front of you. Makes it harder or easier I’m not sure. The drugs kicked my butt. Others do great. You need to be one of those guys.
I have nephews in your age group, so thought about that when reading your situation. I must ask, had a Doc ever asked if you wanted A PSA test at anytime prior to this discovery.? I think 50 , maybe 45, is the age when Docs should mention that test to you.
Well, cancer or not, of course evryone has a D at the end of that line. I hope your Doc didn't actually do that ? Yes, like evryone here, most but certainly not all older, we all have this cloud hanging over our heads. AS others have written here, while studies provide us with survival probabilities for our PCa situation, none are predictive for you.....
I too was diagnosed at 50 in March this year with metastatic prostate cancer and first few weeks were not the best specially when there are no symptoms. Stage 4 sounds scary but like others said, I educated myself and with cool head laid down treatment options and discussed with my MO. I agree with others that aggressive is the way to go at this age.
Sorry to hear your news. I was 60 when diagnosed. Very similar scores but get how being 50 is even more of a shock. Three years on Firmagon and Xtandi and still here and believing that I’ll have more years. PSA undetectable and mets stable. Side effects are a challenge somewhat. Keep talking and understanding. Best wishes for your journey.
When I was diagnosed with gleason 9 in 2013, I too was anxious and pessimistic. The cancer had not spread beyond the prostate. Due to the location of the tumor surgery was not an option. Both the Radiation Oncologist and Oncologist reassured me that something other than cancer would ultimately be the cause of my death. They talked about how rapidly research was producing improved methods of treating cancer. The RO in his British accent said that through treatments they would be kicking the cancer can ‘down the road”.
Now my current treatment is Lupron, Zytiga and Prednisone and I lead a pretty normal life that includes travel, golf and saxophone playing. Hang in there and trust the treatment process.
Hi Yzinger - heart goes out to you brother - the shock of an APCa diagnosis is something no-one is prepared for. It took me a long time to get my head around it - if you ever really do. The advice you’ve been given here is all very wise; take your meds, exercise, try to maintain a healthy diet, a realistic mindset - you’re living with APCa, support from & to your family & friends are all important. Still try to have fun & smell the roses. I’m 41months into the journey after a high volume bone met diagnosis, Gleason 4+4, psa 680. Oncologist had to provide life expectancy to my pension fund & gave me 60% chance of living for 3years but explained this is pretty meaningless on reality & he would keep me alive as long as he could. I’ve been very lucky my psa is undetectable (🤞🤞🤞) & still on ADT + Xtandi. Good luck my brother
Kind Regards
Darren
I'm relatively new to this group (and you're in the right place, btw), and am mostly just trying to learn in case my RP treatment fails. What I can tell you is how blown away I am at the number of guys here who have had PCa for years and years. Also, if I could make a bet on it, I'd bet there's going to be a drug breakthrough in the next few years that will impact your life and turn being 50 from a bummer to an asset (you'll be young enough to benefit from the drug for a long time). Good luck.
So sorry you've been diagnosed- hoping this group is as much help to you as it has been for many of us. My husband was diagnosed at 49 (he is now almost 56) with Gleason 9 and metastasis to several bones- you can see the treatments he's had in my profile and posts/comments. If he were diagnosed now we'd definitely do triplet therapy. We tried to hit it as hard as we could in the beginning given my husband's age and otherwise good health.
Other than meds my husband works out with weights, still surfs when he can, and eats to fuel- while realizing his diet won't cure him it does make him feel better. Not to say he doesn't enjoy a drink and pizza too!
Very sorry to hear this news. I have a similar situation, rapidly spreading gleason 10 went to numerous bones even though I had RP to try and stop it. Only 64 years old myself. On triple therapy now and half way through 6 rounds of chemo. PSA has already dropped from high of 156 in late May to 1.2 last week in late July just prior to Docetaxel infusion #3. I take one day at a time and try hard to enjoy each day. One piece of advice … get yourself to a dedicated cancer center or a well qualified medical oncologist. I stayed way too long (6 months) with just a urologist and surgeon and that cost me. These initial doctors I had pretended to be prostate cancer specialists but they were not. Don’t make that mistake.
I have been where your at. It is a shock. Proper medications/ treatments, diet and exercise will extend your QOL. I am now 7 years past diagnoses and doing well. I can’t tell you how your cancer or body will react to the treatments you and your team select will react. I can tell you that in my case life has continued with manageable adjustments. Surround yourself with the things and the ones and you love. It helps.
Diagnosed 2002 (age 64) Had RPD 2002, radiation of the prostate bed 2005, Lupron and Casodex for at least 15 years (replaced Casodex to Nubeqa 3 months ago). Age now 86 (87 in October)...... There's many many years ahead for you...... Post here, great site..... Sic em tiger....
BTW A male Yiddish vocalist is called a Yzinger...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 08/07/2023 7:18 AM DST
I want to be the first to tell you happy birthday (October)
Welcome to the old as dirt club. 😬
Wow!!! Thank you, you beat my wife to it......(but not my girlfriend)....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 08/07/2023 10:20 AM DST
😂😂
Yeah, happy dirtday
“Incurable,” yes, BUT, they have. So many fighting meds on the shelf that you can be “in the game” for a very long time. Hang in there.
Dx’d at 51, Gleason 7, just turned 65. Soldier on and most importantly, be your own advocate. Research, research, research, I can’t say it enough so you can make an informed decision that’s right for you.
Done in bold print and for a good reason. This is very very good and important advice.
Lots of great advice here, so will just add my advice to find a good medical oncologist, preferably one who specializes in prostate cancer! My husband's local oncologist is very good and the head of the oncology department, but she is a generalist. We consult with an oncologist at Dana Farber in Boston who does nothing but prostate cancer. He is up to date on all the latest treatment protocols. And yes - we do get different (more aggressive) treatment advice from him. Strongly advise hooking up with a major cancer center. Much can be done remotely once the connection is made. Hang in there - that surreal, shell-shocked feeling will subside. All the best to you. And you are definitely in the right place here!
Some excellent advice here from those who know first hand what you’re facing. It took some time before we could change our thinking from dying from cancer to living with cancer. It’s been 10 years since my husband’s diagnosis. We treat it like a chronic disease now. And are thankful for advances as they come. May you feel support and hope from this group.
Get over your shock and fear ASAP. It's happened to everyone here but those things will cloud your judgment. Get a good medical care team, particularly an oncologist who listens to you and answers ALL your questions in a way you can understand.
I don't know where you live but I recommend MD Anderson in Houston. You should be able to google it and find how to contact them.
Best wishes and best of luck.
Please pay close attention to Tall_Allen's posts. I have been going through this journey for five years and he bases his answers on credentialed medical research.
They word incurable seems to be used. Incurable but treatable. My husband is 4 years after Lupron, radiation and Lupron for anther 1 1/2 years and his PSA is under 1. So far so good.we heard the 5 year mark is when cancer can raise its ugly head…
Ask your drs. About erleada .....had same dx 6.5 yrs ago.......doing lupron/ erleada ...werent doing triplet ...in " the old days"....attitude.....and build the house on the land.....make evryday the best...and after a bit the shock wilm wear off.....and your grey world will have color ...once again....
Welcome to the club none of us wanted to be in.
I was diagnosed at 52 last May 2022 also with Gleason 9 with lymph node Mets and one bone met. (Right hip). I completely get the overwhelmed feeling. It will start to feel better once you have a treatment plan.
I pushed for triplet therapy based on advice from great people on this board. I also pushed for an aggressive course of radiation to my prostate, all pelvic lymph nodes and my bone met. My PSA steadily declined from a high of 34 in May 2022 down to the last two (April 2023 and August 2023) being undetectable (<0.1).
There are many treatment options out there and more coming all the time. There is hope. Educate yourself as much as possible using materials from reputable sources. Ask questions of your doctors and push back if you don’t get the answers you need. Don’t go Google life expectancy charts for PC as many of those sources are based on treatments not in use anymore and old data.
I’m happy to chat about my experience if you need it.
I think all of us were shocked when initially diagnosed. I know I was. While no 2 cases are exactly alike, there are a good number of us who have survived more than 10 years with this disease and I believe there are some who have made it 15 and even 20 years. And, some of those, like myself, (I am at 11 years and was diagnosed at age 54) haven’t benefited from the newest treatment (Triplet therapy) because that therapy was NOT the standard of care back then. Treatment has its unpleasant side effects, which hit everyone differently. Just, Eat healthy, exercise, try and enjoy life with a positive outlook and hopefully you too will have a great response to treatment.
Read. You'll find that there are ways to delay progression. We might even see a cure in the near future.
I have a similar diagnosis but I didn’t get it until 65 so I can imagine you would be hit pretty hard. After a certain amount of doom-scrolling (which I still do from time to time) I had to settle into the notion that I just had to live my life. The treatment symptoms are real (and present their own emotional battle) but in no way debilitating (for me I should say), so day to day you’ll feel pretty normal, so you might as well just be normal.
It’s a bit gallows humor perhaps, but I tell myself how many ways I could still die before I die of cancer. You still don’t know what’s going to happen in your life, so try to push back on feeling like your life has been decided.
I think what a cancer diagnosis really does is bring the notion of mortality into sharp relief. It was always there, but it’s a little harder to avoid now. But it really hasn’t changed. Before you were diagnosed you didn’t know how long you had to live. It was a vague concept. Well, now it’s less vague, but you still don’t know, so live your life, do your treatments, love your wife, have some fun, and don’t let the whole thing consume you.
Good luck!
Joel
Great post! Exactly my philosophy.
Just the BEST advice ever!!I have lost friends & family in so many other ways since diagnosed....heart attacks, aneurysms, car accidents, other aggressive illnesses, etc, over the past 4 years, that no one saw coming. And I'm still kickin' it.....lucky me! Enjoying every single minute, still working, vacationing, and enjoying a new art hobby at 70. (Planning for retirement in a decade or so. . .) 😉
I was diagnosed with PC with bone mets in February of 2017. I am still walking, talking, riding my bike, throwing bags in the corn hole plate and playing with my grandchildren. 6 years and 6 months and I feel like I hate the side effects, but the cancer is of little consequence on my day to day life. The worry is still there. Exercise, be happy and live life fully. That is all the advice I have, and push the doctor to be proactive, not reactive.
IMO you've come to the best "home" you could come to for OUR disease. I've asked some really dumb questions on here and always got kind and patient responses. Someone above stressed staying informed and being your own best advocate and I couldn't agree more and this is a wonderful place to stay informed and to keep from ever feeling alone. I know exactly how you feel but from experience I can tell you things aren't as bad as they may seem. Stay strong.
HI Yzinger,
I am in a similar boat, except dx at 62 (high volume/high risk) last November, in Vancouver.
---------
The following links are the most up to date guidance for PCa treatments in Canada (Canadian Urological Association). These guidelines form the backbone strategies for the types of treatments that are approved in Canada:
1. Guideline for mHSPCa
ncbi.nlm.nih.gov/pmc/articl...
2. Guideline for mCRPCa:
ncbi.nlm.nih.gov/pmc/articl...
3. ADT Adverse event and management strategies
ncbi.nlm.nih.gov/pmc/articl...
4. CUA Best Practice Report; Bone Health in prostate cancer
ncbi.nlm.nih.gov/pmc/articl....
5. Recommendations for Genetic Testing for PCa in Canada
ncbi.nlm.nih.gov/pmc/articl...
-----------
The following link describe what physicians are actually doing in the clinic, which may vary significantly from what PCa specialists are doing / recommending:
1. A description of management practices of community-based physicians and prostate cancer specialists
ncbi.nlm.nih.gov/pmc/articl...
-----------
Some advice:
1. Figure out the financial side of your treatments, quickly.
By default, NS doesn't cover PCa treatment that is not delivered in the hospital. This means your drugs may not be covered by your provincial plan and you will have to cover the cost with some combination of private insurance and out-of-pocket. My costs (CDN $) of treatment in BC (which does cover primary PCa treatments) is roughly $6,000 pa for Firmagon (degarelix) , $48,000 pa for Erleada (apalutamide) and $800 pa for Prolia (denosumab).of which I only have to pay out of pocket for the Prolia.
2. Consider getting a referral to the best PCa clinics in NS which are probably QE2 and DalHousie. Do your research here.
3. Push for RT (radiation therapy) of the prostate gland and bone mets of the pelvis and spine. For mHSPCa in Canada this is usually prescribed for palliative intent (relief of symptoms) so you need to present with problems urinating and/or bone pain (trouble walking etc).
4. Push for Genetic Testing, the results may dictate an alternate best course of treatment for your condition.
5. Get a DEXA scan as soon as possible to test for Osteopenia/Osteoporosis. If you have it you will need to go on Prolia now and Xgeva later when you progress to m CRPCa.
-----------
Here are the treatments you can expect to receive based on the guidelines for mHSPCa high risk/ high volume disease:
1. Doublet: ADT (Lupron or Firmagon) + 2nd gen ARAT (Apalutamide, Enzalutamide, Abiraterone)
2. Doublet: ADT + Chemo (Docetaxel)
3. Triplet: ADT + Chemo (Docetaxel) + 2nd gen ARAT (Darolutimde or Abiraterone)
In Canada right now the preference is for #1 based on the thinking (maybe outdated) that that there is no evidence that #3 outperforms #1 in any significant fashion. You can push for #3 but you may need to make your case to your doctor.
-----------
Final thoughts
Casadex (bicalutamide) is a 1st generation ARAT and was probably given to suppress Testosterone flair of your initial lupron injection. 2nd gen ARATs are more effective than 1st gen so make sure that your doctor plans to switch you over to one of those (as listed above).
There is a lot of information here so take your time to digest it. Be aware you need to be your own advocate in Canada's various provincial health care systems, and if you want the doctors to pay attention to what you're saying it needs to be evidence based (as they understand the term) and not some foolish internet quackery.
Also be aware :
a) There are men here on this forum from various countries (UK, USA, CAN AUS) on various treatments. Each country has its own approval processes. Treatments that are available in one country may not be available in another. So factor that in when getting advice on this forum.
b) There are men here on this forum whose cancer is not the same stage as yours. Each stage of PCa has its own set of approved/recommended treatments so again factor that in when getting advice on this forum.
Cheers and good luck.
Very informative post. Thanks for taking the time. Good luck.
Thanks to EVERYONE for the comments. Wow.
Stay positive - lots of PCa patients are living more than 15 years + from diagnosiz
sending lots of good wishes, my hubby recently diagnosed in March, Gleason 9 with mets, lymph nodes etc..huge shock to both of us he’s always been really healthy. Good news for us, so far so good started treatment, zodalex injections and just started Enzalutamide x keeping fingers crossed not too many side effects. We’ve managed to realise, things have changed, but that death sentence thing has moved away from our minds, planning a trip to see grandson in USA and a couple of cruises…things we should have done years ago. He’s still working running our gallery buisness, and we’re getting on with life! Stay positive and ask lots of questions x good luck xxx
please, whatever you do, don’t look at the internet. It will scare the bijeezuss out of you.
Hey buddy! Gleason 9 in Fall of 2011, I was 46.
Many mets, chemos, surgeries, hormone therapy, etc
PSA undetectable with no progression on the scans.
Just rode my motorcycle to the gym as I do 5 days a week.
I strongly believe attitude is everything (and the penile implant doesn't hurt either)
Stay active, this is not the death sentence it was 20 years ago, its just a new normal.
Peace, Johnny
lol @ penile implant. I must look into that or Viagra
Hey Zinger, you might not be there yet but I found Viagra a bit rough on the old ticker so now a little prick of papaverine makes things happen for hours.
Also I gave the urologist the sack after he showed me his new knife he was going to use on me. Get a good oncologist you trust & explains things & dont be afraid to ask questions.
I did viagra for a few years and it wasnt getting it done. Moved to the penile pump. After a few years of that the area at the base of my penis began to degrade. Moved on to the shots at the base of the penis, not fun, and only worked 8 out of 10 times. Went with the implant, its great and on demand. Not a fun surgery and non reversable. But it was either that or give up completely and thats not my game.
As you can read in this forum you have many many years and there are so many medications available. Take control over cancer by intermittent fasting, eat broccoli, baby sprouts, cooked tomatoes, Matcha tea, green tea, coffee, lemon, blue berries, kiwi, pomegranate, olives, some nuts, vegetarian, fish, use Curcumin and garlic in your food. I am walking 30 min. each day and I do int. fasting and watching the food intake. Wishing you good health.
I'm on about 5 1/2 months of treatment after finding high PCA a year ago at 57, with Nov biopsy showing Gleason 8 in 1/2 the cores. I believe in hitting the pca hard early (I'm otherwise healthy so easy to say) and am on clinical trial administering pluvicto, with 3rd of 6 planned infusions next week. PSA is down to 0.008 from high of 49 in Feb before I started treatment. Low PSA could be from ADT alone.
Waiting for bone/CT scans to see where I'm at today before next infusion (I had about 5-7 spots at the start, fewer after PSMA CT scan.
To reinforce what others have said exercise everything (use it or lose it): your cardio (some should be reasonably intense), your muscles and bones (strength training), and your muscle of love (viagra etc works, depending on where you are maybe only a periodic low dose to "help your body get in the mood"). My MO implied that erections are "mind over matter", but a good one (pill-induced or not) can do wonders for the mind.
If you are in NS, be as proactive as possible for pushing for care. I keep hearing from people there that the physician shortage is worse there than out west in BC, and thus the medical system won't necessarily jump up to be your friend. Even here, the RO didn't admit they had stereotactic radiation treatment available until I brought it up. That was a consideration if I didn't get in the treatment arm of the PSMaddition trial, though I was a met or 2 more than they would do in Canada at the time.
Shock and Fear; totally reasonable reaction.
"Terminal" means that what you have is not curable...but it is manageable. That's what we all hope will happen, for many years.
The paleontologist and historian (and statistician) Stephen Jay Gould wrote the following commentary after he was diagnosed with A Very Very Serious Cancer--so serious that his doctors would not tell him how much time they thought he might have (spoiler alert--for what he had, The Median was 8 months.)
journalofethics.ama-assn.or...
It's something I think anyone with a serious diagnosis should read.
Double-Spoiler Alert: Stephen Jay Gould lived about another 20 years from date of diagosis.
What you are experiencing we have all been there
It get better before it get worse
I am going 4 years Gleason 9
Stage 4
PSA 0.04
It's different with everyone
You are not dying you are loving with an illness
A friend of mine got struck by a
beam at work and he is in a coma
Give thanks
Have a good cry pull up uiur boot straps
You are gonna be fine
I was scared toothed best site in the world
Healthunlocked
First of all, I am praying for your healing, and strength. My dad is 88 and has lived with PC for 17 years a VERY ACTIVE AND FULL LIFE!
This group is informative, and a bit overwhelming with the medical info....but we are all here together to share our journeys.
Sending you love, and hope,
Dawn
A positive attitude is key. My advice is to get multiple opinions…and find a really good radiation oncologist in addition to your MO. My experience is that most MO’s do not recommend RO’s until it’s too late. Radiation kills the tumors…surgery removes them….but everything else just slows progression until it doesn’t
Here are some things I would have liked to have known at the beginning. They might be relevant to you. It's also a bit of a diary.
1. My diagnosis is almost the same as yours although I am in my late 60's.
2. You need to get a medical oncologist as soon as possible.
3. In Canada it may be possible to get triplet therapy - the criteria is related to your health and probably your age is in your favor. Triplet is NOT SOC across Canada yet.
4. If you can stand it you need to do a lot of reading. And find out why triplet therapy works. My sense is that the things that doctors recommend are all over the map because the research has moved fairly quickly and many doctors are not up to speed. The difference between therapeutic recommendations typical of 5 years ago and now can be measured in years of life.
5. People will say stay active and exercise. This is terrible advice - the real advice which research is revealing as that a lot of exercise especially resistance exercise but also aerobic exercise is more than just good for you - it's really really important.
6. But exercise is a problem if you have metastases invertebrate. And then they say "don't twist" - which advice is almost useless. How to figure out how to exercise and not break a bone.
7. We're fighting more than just metastatic prostate cancer. Your battles are (1) prostate cancer, (2) cardiovascular disease related to prostate cancer therapy, (3) skeletal fracture risk related to prostate cancer therapy, (4) any particular metastasis driven disabilities associated with an organ.
8. When you start reading about prostate cancer the majority of the stuff you will randomly come across is related to prostate cancer which is not metastasize and it is about living with a cancerous prostate. And all the things associated with that. Metastatic prostate cancer is almost like a different disease. And a lot of the information about the former is a bit of a waste of time when you have the ladder.
9. In Canada there are two forums for advanced or metastatic prostate cancer enjoyers - the Toronto prostate cancer Warriors group, the BC now National advanced prostate cancer forum.
10. You have a lot of work to do - and it's likely a very good investment.
11. Sophistication of pain management is all over the map. I had one doctor who was a pain specialist actually politely expressed surprise at the painkillers I was on. I had crazy pain. Then I went on hydromorphone (aka Dilaudid) - it's a big help. No issues with dependency and then I just stopped because I didn't have any more pain.
12. You can read my profile - started off with my spinal cord at risk and metastasis causing a lot of pain. And the beginnings of walking stability problems. Fortunately no actual prostate functionality issues. Gleason 9 and PSA > 1000 (!). Now PSA is zero. And aside from fatigue life goes on. Monthly Firmagon injections because I don't want to switch to Lupron etc. I'm trying to exercise. Looking for employment again. Also started and amphetamine for more energy.
13. I'm fortunate to avoided surgery and radiation (it was too late). And I have avoided so far any obvious organ impairments. And so far my spine didn't collapse.
14. Psychologically has been really tough on me - and more importantly my family.
15. It's interesting that you were diagnosed with metastatic prostate cancer. Elsewhere on this form I wrote a note on the scandal of not having regular PSA testing. It's water under the bridge but it might be interesting. And I do what I can to advocate for a policy change.
Hope this helps. My prayers are with you.
Thanks for the reply. I was getting confused on your exercise comments but I think I get it.
By any chance as huge milk drinker might i be in a better position bone wise? I only drink milk and water.
Great point also on the prostate cancer without METS being different than prostate cancer with METS.
Yes, I have been reading tons and will continue to read tons. Thanks for forum recommendations.
Incidentally I don't drink milk at all, although I eat a fair amount of cheese. My bone density scan a year and a half ago was the best. And I have been doing a fair amount of exercise which conceivably on my next bone scan well mean I'm okay still.
The whole calcium and vitamin D thing is a big deal and it's pretty complex.
A prostate cancer diagnosis was a shock to every single one of us. Welcome to the club none of us wanted to join. You will find good advice and support on this site.
HiI'm in same boat.
YOU ARE NOT ALONE.....
Breath.......
I've found out this much!
We will not die tomorrow, but will snuff it at some point!!!
Clear your pointless unimportant Todo lists.
Get busy living.
Just focus on this day only....
Not yesterday
Not tomorrow
Just today! ( Forme Today has been a beautiful day)
Breath......
It's going to be ok.
Newly Diagnosed
Newly diagnosed !
Newly Diagnosed
Newly diagnosed
