New diagnosis. What i thought was back pain just turned out to be Advanced Metastatic PROSTATE Cancer on a CT Scan with contrast and PSA of 56.
I've been blessed with excellent health til now. This is all scary NEW to me and my wife, we are in shock.
Oncologist/Urologist ordered a ultrasound guided TRUS Biopsy yesterday Sept 11th and ultrasound found its massive and across LEFT side and beyond the prostate, yet right side looks normal. WAITING for pathology results by Sept 18th appt with our Oncologist. Bonescan appt Friday Sept 13. They think I'm inoperable and not a candidate for radiation.
I am so tired and just listen to music and watch Youtube, Netflix. Only one recliner in the house is comfortable and it hurts to stand but I try to walk a little and move around, stretch daily. I like bands like ELO, REM, Bad Company, Rolling Stones, The Moody Blues, Donna the Buffalo, .....
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ELOfan
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Welcome to the club none of us wants to be part of! First things first, as soon as your back pain improves—and it will (I assume you've already started medication, likely Casodex)—it's important to begin exercising if you haven't already. Aim for 5-6 workouts per week, including both weight lifting and some cardio. In my opinion, the key is to "buy time without progression" because research is advancing rapidly. Clinical trials haven’t quite caught up with the pace of research yet, but they will eventually.
Here in this group you will find some support, some humour (one guy will tell you that it's the best medicine, ignore him! 😜 ) and a lot of useful info!
It sounds as though you are not on “triplet therapy”. Do you know why that’s the case? It’s my understanding that in most cases of NEWLY diagnosed metPC, triplet therapy is the standard of care.
You will have good days, maybe some bad ones too. But you will be fine. My father started, almoust 3 years ago, with a knee pain and we found out the same problem. We were desperate, it.s not easy, but you cand win time. Lot.s of it! Be safe, be happy for having solutions, make a little sport and be glad you have people that love you.
Very sorry you are dealing with this. My husband was just diagnosed in late May. Advanced prostate Ca with bone mets. Lots of back pain for months prior. It was a terrible shock to us too. But it does even out, particularly once treatment starts. It feels better to start to have something fighting back.
Although you may not be a candidate for radiation treatment for the prostate, you might benefit from radiation treatment to the spine which really helps the pain. For my husband it actually took the pain completely away at least for now.
I vowed we would try to live as normally as possible - as you will see others on here say, exercise is crucial. We already had a trainer and continued workouts 3X a week, modified for him until cleared for heavier weights. We walk and we bicycle and do rowing. Whatever you can do will help, both mood and your body. Get with friends, get out of the house, push yourself not to hide away. Read various posts on here - it helps give you and your wife hope. It really does get better. Wishing you and your wife all the best.
Thank you for these kind words. I dont know if radiation for my spine is being considered or not. Everything in me wants to get out of pain and back to my active life!
I also had bone pain relieved by targeted radiation. The goal was to buy me some time during a Pluvicto break but the best effect was the elimination of pain in my shoulder. I was taking morphine to relive the pain (together with naproxin) and now do not need them for that pain as it is entirely gone.
I think it took me 2 to 3 years before I stopped worrying as much about departing this world and leaving my family behind. It takes a while before adjusting to our condition. Some will adjust faster than others and some might never adjust. I am not very religious but there is a part of a prayer that rings true to me: "Grant me the serenity to accept the things I cannot change; the courage to change the things I can; and wisdom to know the difference."
Once you internalize this, it helps you live one day at a time.
Almost 7 years ago at age 58 I was where you are now. I had been diagnosed with metastatic prostate cancer. While I had no pain, my entire prostate was riddled with cancer and it had spread to the bones in my hip/pelvis. I was in absolute shock. Like you I had been in excellent health my entire life. I didn’t know how to be sick. I was sure I was done for and was praying just to live long enough to be able to see my youngest son graduate from HS in 2 1/2 years.
Now, 7 years later, I’m still here. My youngest son is now in graduate school. I still have cancer but it has not spread and I feel good. I’m still in good shape, albeit 7 years older. My quality of life is good. I don’t dwell on cancer much and life goes on.
Take a breath. All is not lost. Most likely you will not be cured (most of us aren’t) but you will live with it, and you can live well. Think of it as a chronic condition for which you are being treated. There are so many treatment options available. For me, surgery was not an option. It has been ADT (androgen deprivation therapy) medications and some radiation. There are many other options available beyond those should I need them. The ADT should greatly reduce your pain, if not completely eliminate it. Radiation may be an option in that regard as well.
Just hang in there. Learn as much as you can. Things will get better once you’ve absorbed the shock of it all.
Your 7 years of survival on ADT and relief from pain Encourages me! You are right, I will try to shift mindset to not being cured but instead "Think of it as a chronic-condition for which you are being TREATED. " I hope i have the opportunity to live with it.
Us ELO fans have to stick together. So I'll share with you song that you know well I'm sure. I hope that anyone reading the lyrics here or listening to them will see them as very positive:
Yes, thanks for reminding me. Hold on tight is a powerful song! Jeff Lynne is an amazing human being and composer, musician. I'm hoping that this ADT is the "Strange Magic" I need and that side effects "Dont bring me down". Instead I wanna "Shine a little love on my life".
ELOfan - almost 2 years ago I wrote two long posts because I found getting diagnosed with metastatic prostate cancer, while still my wife and I still had an at-the-time 14-year-old in high school, was overwhelming and devastating.
While I started in dire circumstances I'm very grateful to be doing very well, over 2 years later.
Here are the two posts (which are actually replies to an original post by someone else). I haven't looked at them in a while and they may be a little out of date - thinking about it now that's a happy surprise that I can say that.
The Beginning Of A Metastatic Prostate Cancer Journey - Part 1 of 2
This is very important - the baseline against which loss of bone mass is measured - I'm sure this has been explained to you. And then you'll work really hard to maintain the bone mass you have already. And then fiddle around with vitamin D and calcium and a little bit of this and that too see if that helps maintain your bone mass. More fiddling.
See you next item reply from MoonRocket with a correction on what kind of a bone scan we are talking about! Thank you MoonRocket!
Wrong bone scan. OP is getting the bone scan tomorrow to see if there are bone mets. Although, since he's certain to begin HRT, he should get a bone scan for BMD (bone mineral density).
A very good point MoonRocket. Needs to be highlighted! Because with new generation therapy there's the possibility of being alive for longer than what used to be expected. And so things like bone mass density loss and cvd need more focus up front!
(Neither here nor there - but about 6 hours ago I had my 28 day Firmagon injection by the nurse that comes to our home. And in the last hour and a half it's the regular "I didn't see that dump truck coming" response - again. I have hydromorphone but I can be bothered. I just put on four woolen blankets. I'll be better in 2 days,)
You get the chills from your injection? Interesting. MO put me on Orgovyx when I recently restarted ADT. No stomach issues so far after 2 weeks.
Speaking of BMD scans, had the yearly physical yesterday and received my script for my bone scan. This will be my 3rd since diagnosis little over 5 years ago.
Hi - my husband is almost 2 years in with stage 4 PCa - re bone scan, he was told to take calcium, vitamin D and vitamin K (plus he's exercising) - his bone density actually IMPROVED between first scan and second, a year or so later! We have all been in that "shell-shocked" stage - you will gradually get through it. This forum is a godsend - great info and great emotional support for both patients and their partners. There are many here who have been living with advanced PCa for many years. You will find your "new normal". Look into "triplet therapy" - it's the gold standard for newly diagnosed advanced prostate cancer.
HikerWife - such inspiration you and your husband are! And a super bravo your husband's bone density improving! And vitamin K2? Wonderful! (I'm assuming it's K2 you're referring to 😃) I was originally eating Jarlsberg cheese everyday because apparently it has the most K2. And in the last 6 months I switched to just pills.
But nobody - not anybody - ever mentioned take K2 too along with vitamin D! I'm thinking of starting actual post instead of just replying all the time. And on this topic. And find out when and how and how much people take of D3, K2 and calcium. And of course these are important for vascular health too!
May I ask please how much weight lifting or resistance exercise that your husband does? And I can't remember if he has any Mets on long bones?
Oddly I was slightly shell-shocked to read about your husband's bone density!
Yup, K2, should have mentioned that. We're on vacation this week so usual info not at my fingertips. Nobody mentioned taking K2 to us either - learned that here on HU. We were surprised his bone density improved too - but we'll take it - want to put off the bone-building meds as long as possible. Meanwhile he's had a ton of dental work done (to catch up) "just in case". He bikes 5x per week and does some light weights. So far so good. As far as bone mets, literally has them from skull to toes - "innumerable". That was scary to find out for sure.
HK, great mention of triplet therapy! There's a very important point to mention about triplet therapy though. And this point applies to a number of people who have joined on this forum. (You're likely are familiar, unfortunately, with all this, but it's worth noting for other readers.)
Triplet therapy must be given close to diagnosis. Triplet therapy of course is basically "let's do chemo with your doublet therapy, all together at once". So after the chemo is finished, for all intents and purposes we're back to doublet therapy. But we benefited from the slash and burn of prostate cancer cells by the chemo.
Docetaxel (the chemo is almost always Docetaxel it seems) only works on fast-dividing cells. I haven't noticed hair loss commented on much concerning Docetaxel, but that's why your hair falls out - because your hair roots are also fast dividing cells.
However, if you don't do Docetaxel before your cancer cells begin to respond to hormone therapy, then it will be too late.
Because your cells will have gone to sleep or something and aren't fast dividing anymore. Some of them may even have died but unfortunately not all of them.
Sadly, one can't decide to pursue triplet therapy a year later. This fact should be known by people newly diagnosed with stage 4 PCa. This is the big news of the big clinical trials - there's no sequencing and "keeping something in reserve" - we hit the cancer with everything we've got up front. Bam Bam Bam. 1 -2 -3.
I was just lucky to get triplet therapy. I didn't know about this form and I didn't know anything medically. Just lucky lucky. But I get the sense in some jurisdictions that patients get to discuss with their doctor what they're going to do. And so if they're going to advocate for themselves, then they need to know that if they're advocating for triplet therapy - which in some circumstances they should absolutely do - that they need to understand you can't wait.
Totally correct. I believe there are guidelines about how closely initiating chemo with ADT therapies should be - there is a little wiggle room but not much.
By the way ELOfan - I also have had no surgery or radiation. It has been a blessing. And possibly like you, the reason for no surgery or radiation for me was "it was too late".
At my diagnosis I had extreme pain in the beginning, and a PS over 1700, and metastases in my hips, lymph nodes, ribs and most alarmingly significantly to three vertebrae and masses beginning to press on my spinal cord: the only thing left was hormone therapy. (I'm not including as realistic here exotic therapies like immunotherapy and radioligand therapy etc.)
And there are arguments that hormone therapy is really the best approach, especially in circumstances of serious metastasis!
I'm not sure I like sharing scary medical history with you - but being told one is "inoperable" is likely quite discouraging. So I'm presenting a different perspective which hopefully can be perceived as positive.
While I can't guarantee my own continued success, or anyone else's good results in similar circumstances, nevertheless I'm a data point of one which is a pretty good data point. There are at growing number of people in my situation on the newest hormone therapies and treatment regimes that are doing pretty well.
Again of course no guarantees, for me or anyone. The initial period in the days and weeks to my diagnosis was exceedingly difficult for my wife and I. It was a big boon to discover MaleCare here on Health Unlocked.
So a big success for you and strength as you navigate through these first days.
I am in Toronto and go to to Princess Margaret hospital for treatment.
I was diagnosed in 2015 with cancer ( 4 -3).I decided not to get chemo or anything invasive and I was fine until June 2023 when I had severe back pain.
For the last 9 years and now , I have been taking a lot of supplements.
I am now on hormone therapy like you ( cancer is everywhere in my bone ).
Not in pain, just some hot flashes .
Waiting for some kind of new med for when hormone therapy will stop working.
I'm going to take this opportunity to comment more broadly on our ongoing discussion, including references to other posts.
My comment relates to how we support newly diagnosed people who have just joined the Malecare forum on advanced prostate cancer hosted by Health Unlocked.
I've seen comments on our forum that our purpose is just to be supportive. One person movingly and poetically put it as "walking with a person on their way home".
The implication is that there should be no criticism of particular choices or advocacy here. I strongly disagree. An online forum is a pretty thin kind of support. Real life and family and friends and neighbors is where people "get walked home". Of course it would be unusual if any of them knew anything about mPCa. And so we come here.
And so we come here to learn about medicine, science & the practicalities of being a cancer patient.
Unfortunately on our forum we also encounter advocacy of dangerous and unproven therapies, often folk therapies, reflecting popular ideology about health. This is not science and not helpful.
A challenge of course is knowing the difference! How do we know something is dangerous advocacy? That's what debate is about! Maybe lycopene is a good idea or a bad idea. Let's find out.
In another thread someone claimed that reaching 75 years of age, which is apparently the median life expectancy for men in Canada, is a pretty good result from taking supplements for 8 years. As Tall Allen pointed out though, this claim about 75 years of age being pretty good is to completely misunderstand life expectancy. 75 years life expectancy at birth. But for a man who has already lived to a certain age, the life expectancy at that age can be much higher. Life expectancy at 75, all things being equal, is quite easily 85!
In my own case I have calculated, based on my own actuarials and life expectancies with metastatic prostate cancer, that I may lose between 11 and 19 years of life because of my late diagnosis of metastatic prostate cancer!!
For anyone to conclude from that other thread on the Forum that taking supplements "works" is sadly wrong. Supplements might be helpful - I take some supplements - but only as an adjunct to a proven therapy plan. Relying on supplements as opposed to embarking on a program of research-based therapy for prostate cancer will fail.
I am probably a case in point. When I was diagnosed I had a PSA of 1700, high volume stage 4B metastatic prostate cancer with mets to my spine and serious risk to my spinal cord. Oh, and extreme pain. And thankfully because of triplet therapy I'm doing really really well.
But why am I a case in point? Because it took a long time for my cancer to get to this terrible place. Probably 8 or 10 years even!
Outrageously the Canadian jurisdiction that I'm in does not support PSA testing. And my general practitioner doctor just did the usual not-that-helpful annual DRE. If I had had the PSA 8 or 10 years ago my prostate cancer would have been caught before it had metastasized. I kick myself for not being more responsible about my health and knowing that I should ask for a PSA test.
It takes a long time, a decade maybe, give or take, for prostate cancer to become full-on massively metastasized. We will never know but most likely supplements made little difference.
Supplements are certainly not a magic bullet. If there were supplements, especially based on traditional herbs, that would stop prostate cancer in its tracks, do we not think that everybody would be using them? And articles in journals and newspapers and magazines would not be reminding us of this everyday?
I have never written a post like this before. I think I should make this a full-on original post. Newly diagnosed visitors to our site don't need encouragement to fear Docetaxel or that avoiding castration is a real option, or case in point that supplements can be a primary response to a diagnosis.
Shell-shocked newbies most of all need help understanding the specifics and the complexities and the decisions that they are confronted with. And maybe a little help managing the new job they have been given, which is managing metastatic prostate treatment, side effects, logistics and ongoing life. It's so time-consuming. And we are tired.
And newbies need to know that metastatic prostate cancer therapy has significantly improved in the last 5 years. We see time-and-again doctors who are not up-to-date and have never heard of triplet therapy.
And there's also so much discussion about this and that exotic treatments, which often are applicable - if they even work - to only a small segment of our population. And people bounce around playing whack-a-mole from this and that treatment. I think a lot of this is unhelpful noise, a distraction from getting the major therapy options right. (I should be sympathetic here, because my cancer and treatment has been stabilized. Who knows what happens when I reach - heaven forfend - resistance or progression or skeletal event or therapy-driven cardiovascular event? I want to live and no doubt I will probably be susceptible to the latest fancy therapy.)
Newbies need real support based on science. And that's how we tackle fear and depression. By learning about and understanding and sharing about the material reality of metastatic prostate cancer.
What about the kind of discourse we have on this forum? Kindness is a notable feature of Malecare on Health Unlocked. We are human beings, from around the world. We are not robots. Or prison wardens. I myself have found comfort in participating here now for over 2 years. I appreciate the knowledge that people have shared with me.
One of my fears is being rostered by not-up-to-date, not to say incompetent, medical professionals. Fortunately I have been guided to triplet therapy by knowledgeable and humane medical professionals. Triplet therapy apparently is not even standard of care yet. The stats are without triplet therapy given my diagnosis I would have left my family already.
When people say, "don't criticize past decisions", this intended kindness has a lousy result. Because we interpret this injunction as "don't criticize bad choices around metastatic prostate cancer".
My note here is not an ad hominem. I am not criticizing any persons. I know I have regrets about things I have done in my life. Probably most of us do. Those regrets can be debilitating. And we live with the consequences certainly.
But let's not confuse criticizing bad ideas with criticizing a person. We are where we are now and we hopefully are trying to do our best. Most religions or philosophies such as stoicism encourage us to do our best from where we are now. And become even better versions of ourselves.
And in the meantime, in the sweet years that Heaven enables, let's continue to make this forum the solid resource that it is for metastatic prostate cancer. A resource uniquely accessible. And oddly more helpful than many well-marketed alternatives.
This is a well-written comprehensive note that helps me in understanding how the forum can be used effectively. I am currently waiting for more diagnostic information than just my PSA. But like John in the middle here, I feel like my opportunity for discovering this much earlier has been missed. And I take this as a lesson to share with other men because it seems like at least in the United States that PSA testing is not a clear guideline for men 50 and above.
So as John says here, it's up to all of us to share information and not feel as if we're discrediting any other person on this site.
As a friend of mine likes to say, science is all about questioning and continuing to confirm and update the data. As soon as you disallow this continuing exploration and discussion, you shut down what could be productive conversation.
Do research, heed advice from the others here, always do some QoLing to give yourself a lift. Mine was Beach Therapy, but oh wow, Spain has me swooning.
I changed diet to plant based, fasted prior to chemos, did 16 hr daily Intermittent Fasting, worked out at least 2x/day and QoLed
Okay I guess I didn't answer your question yet about how long it took to leave shock behind?
There are different stages of one's emotional and cognitive response to a diagnosis of metastatic cancer, but it took me about 8 months for me to begin to think that I wasn't going to die right away. And might be able to live for a while. The fact that my body responded positively to my therapies was a big help. (And while I had been referred to and had multiple meetings with palliative care, after a while they didn't want to see me anymore 😂)
There's also a different kind of being overwhelmed which is not related to emotion. This being kind of over whelmed by a cancer diagnosis shows up in terms of logistics and meetings and decisions and research and one's ongoing life and balancing it all. This probably a took a couple of months just to get into a new rhythm.
I'm listening to Donna the Buffalo now on your recommendation - thanks for that! So far they remind me a little of the Grateful Dead. I'm a big Prog Rock fan myself.
I'm sorry to hear about your advanced diagnosis. "Cancer Panic" is almost universal, but it does diminish over time. There are some great medicines now that can keep your cancer managed for a very long time, and they get rid of the pain. The current standard-of-care for men newly diagnosed with bone metastases is called triplet therapy, which you can read about here:
My husband discovered his had metastasized a year ago due to what he thought was just a back injury. He has had back problems his whole life. We were devastated. He also had multiple other bone lesions. They were able to do 10 rounds of radiation on the tumor on his spine that helped tremendously. Because he is stage 4 he is not considered curable. He is on orgovyx and keytruda and doing well. Just had a bone scan a few weeks ago and all is clear. Don't give up!
May I ask Jeep, what jurisdiction you were in? Over 2 years ago I was diagnosed with metastatic prostate cancer stage 4b. On a different therapy than you, but as you say "don't give up"! 😃
Glad you tried Donna The Buffalo Try their songs, "Ancient Arms" Sailing" Me and Depression" "Life is Strange". I especially like their cajun/zydeco influences.
What Prog Rock do you enjoy maybe Emerson Lake and Palmer's "Lucky Man"?
I just made a short YES playlist a couple months ago. Also put the songs in the order that I found went well together. But of course to each their own. Its art after all lol.
Never was a big YES fan. However, Michael Smerconish from CNN had a morning talk show on 1210 WPHT in Philly and he would go on for days talking about YES.
I took a deep dive into the blues beginning in the early 90's. It has everything I liked about rock afterall. Lasted till early 2000's then and till now back to my all over the board interests.
Funny story. Moved to Chicago suburb in late nineties. New job. One of the guys says getting together at a bar nearby Friday evening. "Usually live music kinda jazz or something".
I drive about 6 minutes from my apartment and walk in the entry and there are all the posters on the wall for upcoming artists--Koko Taylor, Buddy Guy upcoming, and Magic Slim and the Teardrops were playing that night. Holy shit I thought. Wow. I live next to a gold mine. My new work associate was clueless lol.
I love Blues too - there is no rock 'n roll (Rolling Stones, Led Zeppelin, etc.) without it. I used to go to Blues clubs back in the day, when that was a thing. I saw one of Miles Davis' last concerts.
Hi I was diagnosed in April this year when my PSA was over 300, Gleason 4+5. I had back pain also but virtually no other symptoms. I think you’ll feel a little more at ease once you start on some treatment. This Will almost certainly help with the back pain. Mine has gone. I’m no expert but listen to Tall Allen, he recommended Triplet therapy when I first posted and that’s what I’m currently on. Docetaxel, Darolutamide alongside Hormone therapy. Best of luck with it all anyway.
Great question ELOfan - I honestly think it took me 2years of successful first line therapy (ADT + Xtandi) before I started to come to terms that I may live for several years. I wish I had the wisdom to advise you how to accelerate this but I don’t. All I can advise is that until then live for the day my friend - have some short term fun things planned - an old adage I like is : don’t look back unless you can smile, don’t look forward unless you can dream. Another is; don’t borrow tomorrow’s sorrow. Good luck brother
Mr. Trolley - you "sold all your stuff" which you kind of need again - this almost humorous throwaway comment is so inspiring! But also aggravating is you already know! Because a lot of us are also now still here! When I started in 22 the median stats for stage 4B and my situation (which were really hard to find) were a year and a half or maybe two. I was referred right away to palliative care. It's different now.
I can imagine how you feel. I felt the same when receiving my diagnosis although it pales in comparison to what some of these guys are burdened with. After reading all the horror stories I figured to be in the 3-5 year range and my uro wasn't much help as he simply refers you to either surgery or radiation and drops a few names. So for about 3 weeks I had evil thoughts. I sold my car collection. My backhoe. 2 race cars. I miss my backhoe!!! lol. I felt these were things my wife would know squat about and probably give them away. I lined up my buddies to liquidate my automotive machine shop and explained pricing in case things went sideways. Updated the will. The lesson I learned is that the only thing that went sideways was me. You listen to these guys on here and you won't go sideways.
I've been reading about PC for 5 years now (started with serious urinary issues) and I've had it for 3. I'm glad I did get a bit wobbly...it helped me seek the best treatment for me and the best providers to do it. Use your fear as a motivator. . I don't miss the cars. I eventually sold the machine shop and don't miss it as well. I now spend my extra time with my family. I still miss that damn backhoe tho!!(JD310D Turbo 4x4).
Get something good out of this experience I've lost 70lbs and none of it was due directly to cancer. Cancer was just the motivator. Wife and I are better connected now than the past 35 years...kids too! I hope the same for you.
Good luck to you sir....I'm sure you will be pleasantly surprised when you get busy with treatment.
The shock of this diagnosis is something that most experience. I think it took us about 2 years to change our thinking from dying from cancer to living with cancer. When I told my brother about this shift in thinking, he was able to achieve that shift in a few months. Now my husband is 11 years past diagnosis. It's been a roller coaster and some tough times, but we are grateful for the time together. I hope you can see the support, wisdom and compassion you can receive from participants on this site who are on the same journey you're on. Our best to you.
I was diagnosed with Stage 4, Gleason 9 cancer over ten years ago, age 54. I’m still here still clicking along, God willing. For me it was early aggressive treatment, seeking out top docs who specialize in PCa even if I had to travel, and most importantly, the power of prayer. I try and take it a day at a time and I’m grateful for every day God blesses me with.
You can read my profile to see what my journey has been.
Just saw ELO in Indy last week! Amazing concert, third time seeing ELO. Going on my sixth year of dealing with PC started at 60. Stay positive and try to be as active as possible which I know from experience is difficult at the beginning. You should start to feel better physically as the ADT starts to work. You may be fatigued but hopefully some of the physical aches will subside. Lots of options to pursue if so inclined, which can be found on this site. Best of luck with your treatment.
All the responses you are getting are spot on. I'm about 9 months into this. On zytiga/predniose, Lupron shots every six month and Prolia every 6 months for bone density issues. Feeling good! Fatigue is an issue. Rest, but fight it. Hit the gym regularly - multiple times a week. Adjust your diet. This battle requires some change to your routine and habits.
I've said it before but you get to the point where you tell the cancer to F off. You won't beat me and you won't victimize me. Not saying you won't have good days, and bad, but releasing the fear and going into fight mode helps.
Learn as much as you can. Lean on family and friends for support. They are truly there to help you. Learn from this group and lean on them. We are all in it at various stages and KNOW what you're going through.
My issues started with back pain. Had bone mets de novo. 10 rounds of radiation knocked that out and I have no pain.
Can't add much to all the great info and advice. A few points of emphasis;- Get baseline numbers: Testosterone, DEXA (bone density score), genetic testing - both somatic (the tumor) and germline (blood or spit test). They will help you make more informed decisions down the road as these numbers will change.
- Get 2nd opinions anytime you have a major treatment decision to make. You may have a terrific Oncologist, but they're all human
- Exercise, both some weight/resistance bearing and some cardiovascular to get your heart rate up. Do this several times a week, especially during difficult treatments. I celebrated my last round of chemo with a 5K race. I found energy is best first thing in the morning. Maintain a constant weight if you can.
If your goal is a many-year journey and because you're still young, the research shows going aggressive out of the gate (triplet therapy) is a good choice and may have rewards such as treatment vacations down the road. Every case is different, which is why your Oncologist is SO important.
Good luck and we're all here on this journey with you!
I was on crutches when I started treatment over two years ago. Now I live a pretty full life with only occasional minor pain. I’m blessed with very mild side effects. God bless you and yours.
From day one. Do not succumb to fear nor listen to the fearmongers here and elsewhere. Be careful about whom you tell among family and friends as well.
3 oncologists told me in 2020 that I have 3 to 5 years to live which meant to me some men die sooner, some men survive longer. Indeed, you'll hear on this list from men who say they've had stage 4 prostate cancer for 20 years. Take the attitude that you'll be one of them.
Find the best doctors you can find; if the doctors don't talk to you and/or don't listen, find other doctors. There are plenty. Take the best course of treatment, medically-indicated, to give you the best quality of life for the longest time possible.
I was diagnosed in April 2020 with several tumors on the ribs. For the last 3 years the scans have shown no tumors. I continue the same treatment with regular blood tests and annual trips to MD Anderson Cancer Center in Houston. My story is not typical and it won't be your story. Whatever the case, look forward, not behind, and ditch the fear ... it'll kill you as surely as cancer will.
If you'll read this board regularly it will help you. The people that come here are informed, tough, strong , resilient and very very thoughtful . It's a given you're going to have "down days" along the way but the key is if you NEVER GIVE UP you'll always have a lot more good days . Godspeed on your journey.
I didn’t get depressed right away. DX at 64, stage ,4 Gleason 9, Mets to bones. I went about four years feeling OK as I could be. Then it hit. I was so down, I couldn’t get up. Saw a shrink, went on anti depressants. I would come up for air and then back down the rabbit hole. My wife was great and not wanting to leave her made me stay alive. I slowly pulled out and today am good. No anti depressants either. My PSA is creeping up but still very low. I still have time to enjoy every day with my wife and family. I am getting rid of stuff that I collected over the years that I no longer need. Mainly because I don’t use the stuff anymore. Built my last house the one we are in) and no major projects left. Enjoy every day. It’s not worth getting down because it is what it is.
In my experience the worst thing is anxiety and fear of the unknown. Please get therapy so you have someone aside from your wife to help deal with all this. Second, you have come to the right place to get information. So do some searching here and don't rely on Google!
And consider that in 2014 I got Medicare and went in because my kidney was bothering me. After the doctors stopped freaking out (WAIT, here's a 65 year old man who's never had a colonoscopy???!!!!!!!) my Gleason 9 (4+5) stage 4 prostate cancer with extensive bony metastases with rapidly increasing PSA was discovered. They declined to remove the kidney (unrelated, stage 1 renal cell carcinoma) until they were sure I would live (did I mention that I was sole caregiver for my 90-something parents who were gone withing 6 months of my diagnosis -- therapy was really, really helpful).
I responded to treatment (PSA dropped from over 50 to below 1.0), they took out my kidney and I planned on 5 years.
After 5 years, I moved to near where I'll be buried and settled in for the end.
It's been 10 years and I just saw a urologist who refuses to believe that I'm terminal.
Exercise is good, stress is bad. You will be tired and lack motivation due to low testosterone so you'll need to just get off your a$$ and do it! Again, do whatever you need to improve your mental state.
Nowadays, you're probably looking at a chronic condition rather than a death sentence.
Almost 5 years in with a prostate that had 11 from 12 positive and spread to pelvic lymph node as well as in the belly, Erleada/Lupron with no changes other than the well documented side effects, but working full time and just got back from a 7 day 5000kms motorcycle ride from Mission BC to Rapid City South Dakota to see a friend with pancreatic cancer. It’s not the end, but a beginning of a new journey. Stay positive, write down all the questions for any Dr appts and use the knowledge from this site to assist your travels with this disease. Stay strong
So much good in these posts, I could easily just say Amen and leave it at that. But a couple of things come to mind that I wish we had understood better. You and your wife should become familiar with the side effects of ADT on your mood and ways to mitigate that - and give yourself grace in those areas. Talk to the doctors about intimacy. There is wisdom out there, but the doctors don't always discuss it.
This forum is where I've garnered the wisdom I've needed to talk intelligently with our medical team. And many of us pray - praying for you today to find the right path and peace of mind.
Friday the 13th of Sept BONESCAN result online shows mets thru ENTIRE spine, ribcage, scapulas, pelvis, femur....now we have to wait 5 days with this news til Oncology appt Sept 18th.
Try not to dwell on the scan results. Not sure what the weather is like where you are but getting outside for a bit each day may help. It always does for me. You'll start treatment soon and you'll start to feel better.
Thank you for the reassurance. I did go outside today for a daily walk. Trying to get fresh air each day. Yesterday some dear friends came over for a calm visit and we sat outside together. So good to know that others care about us. 🌳
Electric Light Orchestra. ELO Now I get it.... all the while I thought you guys were regressing back to your childhood when you had trouble asking "Please Mom, more Jello"....
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Metformin
recently diagnosed and gathering info
Advice: Fiducials Marker's
Seafood Lunch with an OLD friend, Prostate Treatment choices (revisited) and "what would the urologist do?" (differently than he'd advise?)
