Received the shock of my life six weeks ago. Out of the blue I started having urinary issues accompanied by lower back pain. Finally after trying to ignore the issues I went to the doctor in town. He referred me to the hospital in Billings where I found out I have one foot in the grave. Let's see, PSA 450 or so, some sort of scan showed 3 places on my spine that are supposedly cancerous and another type of scan that didn't show much. They gave me a shot that stung like hell called Eligard and told me I need to start chemo or some kind of pills real soon. Men in Lewistown don't get this stuff. So now what? The doctor in Billings told me about this site so here I am.
I have what ???????????????? - Advanced Prostate...
I have what ????????????????
Read more about...
62 Replies
•
You came the right place and sooner was better than later. Did you also get a CT scan ? Are you working with a Medical Oncologist yet? If not find one asap.
• in reply totreedown
They gave me two different scans so I'm guessing one was a CT scan. The doctor I'm seeing is a cancer doctor at the Billings cancer center. He told me he treats a lot of this type of cancer. I'm wondering if I should do the chemo stuff or take the pills he talked about.
treedown• in reply to
Smarter minds will answer soon and I suspect where you are at you have options but based on the cancer being in your bones you may need both. If you tell us the name of the pills that will help and the more the you tell us the more info you will get in return. It is also good for you to wrap your head around what's going on if that's what you want. Many prefer just to be told what is going on and what to do. Your doctor most likely can set up a portal you can access online so all your test results and info are available to you. Its the start of what I hope is a very long journey for you.
I found this forum after I had made all my decisions on treatment which was disappointing, but I have learned much and have a pretty clear plan for what may come. This is often a slow moving disease so there's time for action and there's time for living your life to the fullest. This is a place for knowledge and a place for support which is often difficult from people that don't understand what your going through. The men and woman on this forum do. Welcome
• in reply totreedown
The pills are Zytiga. Allen jogged my memory.
treedown• in reply to
I said smarter minds.
Concerned-wife• in reply to
I am impressed by your doctor referring you to this site. It is so helpful but most of us had to find it ourselves.
• in reply to
You’ll find out shortly
Chugach• in reply to
consider jumping on a plane and getting a second opinion at a major cancer center. Seattle is great and close to you. Talk with a urologist, medical oncologist and a radiation oncologist. This kind of thing warrants the need for finding a top tier medical center for your care. I traveled for 4 years out of Alaska for appointments and treatment. I’m not sure I’d be here if I hadn’t done that. Stay strong brother!!
Welcome NAS .. what an ideal Farm pic. Unfortunately men get this all over the world. In my uneducated opinion it’s an epidemic . My brother lived in Billings years ago . Now he’s in Cody . Good Dr to lead you to us Others will ask for your age and gleason score . We all know that feeling of what???????? Hang in there. In a year you’ll be guiding newbies and you be well versed in this disease. Live healthy and keep rolling ! 🌵😎
• in reply to
Thanks Lulu, the picture is the old homestead, been in the family for over 150 years. Our cattle operations are a mile or so down our private road.
• in reply to
Very beautiful. Wow!
Savoy• in reply to
That’s God’s country, for sure
Hey Brother, you may be on Eligard for at least 18 months, expect hot flushes, mood swings. fat gain, muscle/bone loss.
Eligard will lower your Testosterone and those side effects are due to the low T.
Do cardio(esp weight bearing) and weights to offset the side effects.
Change diet to avoid fats esp animal fats, go plant based. I do IF(Intermittent Fasting) for 16hrs overnight.
Pills could be Zytiga (Abiraterone) or Xtandi (Enzalutamide)
Adding Taxotere chemo to Eligard may increase OS(Overall Survival) - _CHAARTED trial
oncology.medicinematters.co...
I had PSA @ 840.2 in 01/2015, started ADT(Androgen Deprivation Therapy) and then Taxotere two weeks later. MO(Medical Oncologist) allowed me to have 9 more chemos over the 6 protocol for a total of 15.
PSA hit 0.7 at the end on 2015, and a nadir(lowest point) of 0.1 in 2017. Then PSA crept up
Had 6 more chemos recently as both Abiraterone and Xtandi failed. The latest Axumin, showed a resolution of two pelvic hot spots. PSA hit a three year low.
I'm in my 6th year (hit at 57) with #stageivpca and the old data said only a 29% chance.
Many men on HU(Healthunlocked) have endured for many years longer than I.
tehachapinews.com/lifestyle...
Fight on
Randy
• in reply todockam
Thanks!
The latest evidence is that doing both chemo and Zytiga has the best results:
prostatecancer.news/2021/05...
The closest top oncologist I know of would be Neeraj Aggarwal at Huntsman in Salt Lake. Maybe you can arrange a televisit and he can work with your local oncologist.
• in reply toTall_Allen
That's it, Zytiga. He wants me to use that or do chemo. Hell I don't what to do, The only time I leave the ranch is go to the bank once a month. I guess the boys are going to have to take on a larger role. So these doctors talk to each other in different states? the guy I'm dealing with is Shin Yin Lee.
Tall_Allen• in reply to
No reason you can't keep working.
• in reply toTall_Allen
I don't have a choice, we have 5,000 acres and God knows how many free range cattle.
Yambone• in reply to
My PSA was not as high as yours (14). I also had bone metastases. My urologist put me on Lupron/Eligard. My oncologist almost immediately recommended chemo, and Zytiga. Currently attacking the mother ship with radiation, even though my PSA has been undetectable for a while. Keep working that farm, it will be good for you.
treedown• in reply to
Lots of things to think about and discuss with family but it doesn't have to be figured out tomorrow. Initially the treatments may relieve your symptoms but you may also get side effects like loss of libido, smaller junk, hot flashes, fatique, and others that don't come to mind. Oh yeah brain fog. Sorry that was a poor attempt at humor which is j-o-h-n's job (another member).
• in reply to
You will do what best for you . You’re leaning much here. That will tamp down not knowing and that fear . It’s tmi so please don’t overload . Easy to do . You can get many answers here. Shin Yin Lee can help
Save your life . Self advocate always . All I know is that you’re not a snitch . That’s a rare quality that’s not often found today . Keep your head up .
MateoBeach• in reply to
Ask about the “PEACE-1” treatment adding BOTH the chemo (docetaxel) AND the Zytiga pills. This is the latest and by far the best for your type/stage of cancer (de novo metastatic prostate cancer). Worked much much better than either choice alone. Follow up with the televisit Tall Allen suggested in SLC. Welcome and good luck.
Hello Tall_Allen! Thank you for your continued wisdom and guidance. I am the wife of a man who doesn't want to know anything at all about his prostate cancer or available treatments and I'm left doing the research and trying to decipher what and when to mention what I *think* is important for him to know... and I am woefully inept at it, but I persevere.
My question to you is when is the use of chemo plus Zytiga indicated? Do we wait until the PSA rises? Is this the only time to investigate that regimen? Hubs is stoic (to his detriment) and I rarely know if he's in pain. I'm so afraid that it will be too late once it's obvious something is wrong.
Thanks for your response.
PEACE1 was in newly diagnosed men. You have nothing in your profile, so I don't know what his situation is.
Hello Not_A_Snitch,
Currently there is no cure for advanced prostate cancer, i.e., prostate cancer that has spread to many places in the body. However there are treatments that will suppress the cancer, holding it down, keeping it from causing pain, and increasing life span. Most men will live at least a few years, and some quite a few years, depending on the luck of the draw - how well their cancer responds to the drugs and treatments.
Research over the last few years has indicated that hitting the cancer early with a combination of powerful treatments gives a longer lifespan than giving a single treatment until it fails, then another treatment, until it fails, and so on. It is because of that that your doctor wants you to start taking more drugs in addition to Eligard. The most commonly prescribed drugs are docetaxel (a chemotherapy - brand name Taxotere), and abiraterone acetate with dexamethasone) (a hormone therapy - brand name Zytiga).
New research is occurring all the time and new treatments keep coming out. The longer you live, the more new treatments will become available to add more to your lifespan. Recently a clinical trial found best results by taking all three drugs at once. These drugs can be hard on the body but can add years to your life.
It sounds like your doctor is a good and honest one, though it also sounds like he handles all kinds of cancer - which limits the amount of time he has for studying all of the new research for any one type of cancer. You might ask him if he recommends that you see a specialist in prostate cancer. People here may be able to recommend some in your area, or you can have a look at the U.S. National Cancer Institute's list of "Designated Cancer Centers" - hospitals and clinics that NCI thinks do the best research and get the best results. See: cancer.gov/research/infrast...
For good summaries of recent research, I recommend looking at NCI's web pages on PCa, starting at: cancer.gov/types/prostate and at the blog maintained by our own expert Allen Edel's ("Tall_Allen") blog: prostatecancer.news/
Best of luck with your treatment. I hope we see you around for many, many years.
Alan
• in reply toAlanMeyer
Gee thanks Alan. I need information like that. Hell we all live to be 90. This is like something out of a movie.
• in reply toAlanMeyer
Nice post. I am finding it very alarming that members on this site( not this particular poster) are still using the single treatment to failure protocols in the clear and unequivocal evidence that treating the cancer early with combination ADT+(zytiga|xtandi|docetaxel) yields superior results. If MO will not change then get a new MO.
Welcome aboard. Hold on tight because PCa treatments are evolving rapidly. When I was diagnosed 4 years ago, with bone Mets, lymph Mets, and a large tumor outside the prostate gland, my urologist told me the best treatment was the “kitchen sink.” (Throw everything except the kitchen sink at it). This actually makes a lot of sense, because the most aggressive treatments may be the most effective while you are still healthy and strong enough to benefit maximally from them. So take the Chemo (typically 6 infusions spaced three weeks apart) and the Zytiga. Chemo side effects are easily manageable for most men.
Most of what you may want to know can be found on this site, so dig in. Let me, however, leave you with some guidelines that helped me immensely.
1. Educate yourself about every aspect of this disease with the understanding that you are the captain of your treatment team and no one cares more about your outcome than you do.
2. Get a second opinion from a Center of Excellence. Your closest options in addition to Salt Lake are Mayo in Minnesota and the University of Washington in Seattle. Your doctor will not be offended if you get a second opinion.
3. Lean on your family for support. Fighting this monster is not easy, and it is lonely. Now is not the time to be silent or secretive.
4. Opinions about diet and supplements are like a-holes, everybody has one. Study and draw your own conclusions, remembering that diet and supplements are not a substitute for conventional treatments.
5. Positive Attitude and mental toughness are highly underrated qualities that will serve you well.
I’m heading to our second home in Big Sky next week, so would be happy to meet you for a coffee or a beer in Bozeman. Yes, I still drink beer, this disease does not have to take away all our pleasures.
Excellent post, that is what I did almost 4 years ago and still here to fight on, congrats on your journey and still with us.
Not_a_Snitch, Canoehead's list of five are fantastic. Probably the most important are #3 and 5. Glad you made it here. Welcome to the fray my brother. Prayers to you and your family for healing and health.
Canoehead, great introduction to a new member. Can I use it outside of here. I have had people at work who have confided in me about a parent or loved one who has been diagnosed and when I talked to them, I thought I was all over the place. This is great!!
Nice Intro Canoehead and welcome to the newbie (which I was a half year ago my friend) Hidden . The experience of those in front of us on that journey in this group will really help you understand and relax - which is extremely important (stress is bad). Been there, done that with many in this forum - chats around modern meds aka standard of care (SOC) and supplemental activities proven to prolong life (diet, exercise, friends, faith, etc). After the shock of the diagnosis we all eventually say live life to the fullest... once you get past the "Oh shit" moment. You'll get past the "Oh Shit" and "Gratitude" will replace it.
Everybody's cancer is different, and reacts differently - but the crew here will share their stories openly. Don't be bashful to ask questions, weigh them just as you would advice at the coffee shop - some are "out there", some are "on point", your own research and discussions help YOU MAKE YOUR OWN BEST DECISIONS (with your care team). There's a search up top which is good once you figure it out.
I'm 59, strong and fit with a wonderful family.I was diagnosed 3 years ago stage IV, PSA over 1700, cancer already spread to bones and my liver (not a lot, but enough) and been through lots of treatments so far (you can click on our pictures and get a brief of our histories which usually includes which treatments). I've gone for a run two days after chemo treatment, it's not what the old folks had to go thru, you can power through it. But if you need to get your crew to stand up, take advantage of that - but keep moving and lifting heavy things with them.
My welcome advice is this: get as fit as you can. Being fit, healthy, and strong helps get through the side effects that the modern meds bring. I delayed my chemo for 2 months so I could focus on getting in the best shape and as healthy diet as possible be (and finally do the things my dentist was bugging me about - do that NOW). My side effects were minimal. Also, forget about the worst case scenario the Dr's. have to tell you, focus on surprising those bastards when they have to retire and you're asking for their replacement.
Hi pardner:
It’s possible after complete and thorough diagnosis, option may include all 3 treatments at same time: zytiga, chemo and radiation. Cowboy up and stay strong!
The failure free survival for abiraterone (Zytiga) plus prednisone and ADT is 4.3 years, according to the last analysis of the Stampede trial.
(Failure free survival=period of time to PSA increase, radiographic or clinical progression, or death.).
urotoday.com/conference-hig...
Abiraterone plus docetaxel and ADT has a radiographic progression free survival of 4.5 years.
Men all over the world get this disease and yes men in Lewistown DO GET THIS DISEASE! You had a PSA of 450 and you don’t even know what scans you had? What pills they recommended! A lot of people here will sugar coat it but to be blunt you better start getting your shit together and start getting up to speed on your cancer!
I am the odd duck here in that my treatment was before silver bullets came along like Zytiga. In my case, a chemotherapy with hormone therapy clinical trial for six months. Two different chemo infusions alternated with an oral to match and then with Eligard or Lupron. I preferred the Eligard. Yes it stings only fir a short time vs Lupron where I was sore for a day or two, the important part as Tall Allen and Alan pointed out combine the chemo with another drug like zytiga. There are new results published on combining the treatments,
I was Metastatic in the spring of 2004.......
You can do this. Gather the studies mentioned and share with your MO. I recommend a genitourlogic specialist for a MO. However, it sounds like your guy will work with others,
Don’t panic and you will have plenty of years to work your dogies.....
Gourd Dancer
Beautiful photo of your ranch? Anyway, welcome. I didn't see that you gave your age and Gleason score. Those do influence treatment plans, as does your access to prostate cancer oncology specialists. It is a complex disease that plays hide and seek by changing its survival methods. When it changes, so do the meds.
Treatment is much better and meds are much more effective but first you need to educate yourself and a family member or friend should take on the advocate role and educate themselves about the latest treatments. Always use reputable websites, like Johns Hopkins, Sloan Kettering, MAYO, UCSF, Prostate Cancer foundation, NIH studies, American Cancer Society, etc. Between treatment side effects, stress and brain fog, having someone to take notes, ask questions at appointments is really a good idea.
This won't sit well with you but a plant-based diet is one of the recommended lifestyle changes (occasional red meat is okay...but do your own research on that). There are often men's PCa support groups too, in almost every community.
We will be waiting to hear how you are doing. Good luck!
What a wonderful family legacy .. One foot in the grave? The other to kick pc in the ass. Please don’t listen to negative stats or life expectancies. You can do better, you’re not a stat. When I got my dx six years ago I felt as if I was hit in head with a 2x4 .. I was 53. Just turned 60. We give it our all to survive . You’re in the hardest part . Good luck finding your way through the noise and anxiety that can arise .
I have being living well with the disease for 14 years now, based on very intensive treatments all the time. But I remember the terror of receiving the diagnosis.You may find some comfort and inspiration from watching this documentary film, which I produced last year, based on the stories of six men with prostate cancer (one of them being myself) who were all diagnosed at a very young age:
"Faces of Prostate Cancer"
vimeo.com/eybenfilm/dupd202...
I agree. This is a good film to watch.
I'm also in it (the first appearing youngster) 
• in reply toDanish-patient
Bravo for life! 💪
a little trick my GP told me. As soon as the needle is withdrawn hold a finger on it applying some pressure for a couple of minutes. It helped big time and no bruising. regards Glenn
Welcome fellow warrior, stage 4 prostate cancer. Scarey stuff. I was diagnosed with this monster August of 16. My oncologist and I agreed on the aggressive battle plan. 6 rounds of taxotere chemo, with a bone shot monthly and eligard shots monthly. So far so good. PSA. 0.05 and stable cancer. This monster won’t go away but will get worse as we go. But I’m on the right side of the grass so far. Oh and I was put on Xtandi a cancer drug after chemo. Keep up the fight. There’s no question you can’t ask as we have some really good guys here 👍🙏🙏🙏
Welcome Brother, you are experiencing the shock of diagnosis we all went through in time you will adjust. You being a Rancher is probably the best medicine for you. The treatments we are all prescribed work best with staying active and with running a ranch I'm sure you will. I've been on Zytiga for over four years now and it has been a rough time but it does work for most of us. It's definitely a life changing experience for us but the key word is "Life " Never give up Never surrender. Leo
Is it better to live in a valley or on a hill? Your home is beautiful. I'm wondering if the location protects from harsh winters or obscures your view. Yes, a little cryptic for sure, but your mindset will depend how you move forward. The most important question you must answer is are you living with cancer or dying from it.
• in reply toJvaughan0
This house being 150 years old was most likely built for what you stated and I would I imagine that wells strike water in the low valleys better than on top of hills.
Welcome. Great photo. I live a rural lifestyle as well. I was diagnosed almost 3 years ago. Others have posted some great advice. I just wanted to add that you may find the next few months to be a period of great emotional ups and downs ... anger, bewilderment, questioning, crying, disbelief, etc. It's all completely normal and it gets better with time, especially with more knowledge about the disease. I read voraciously during the first few months. This forum has been great for me.
You have received a big shock. Cancer is now going to be a part of your life. It will probably mean a few changes for you but it isn't difficult to adapt and carry on. Best of luck and feel free to ask questions here.
Others have given you a ton of good information, and you are fortunate to have been directed to this site early on. I wish I had been. I would only add that life expectancy numbers are just averages over a wide distribution, with a long tail to the long-lived side. With good treatment, a strong attitude, family support and a bit of luck, you can be way out there.
Welcome.
Welcome Not_A_Snitch to a club none of want to be in but benefit from. I’m 81/2 years in and enjoying life as I always have with some physical challenges along the way , mostly from aging. I think it is important to consider getting a second opinion at a major cancer center as others have suggested,very strongly consider taxotere chemo plus zytiga to aggressively treat this disease and keep working for as long as you can on that beautiful family homestead, and never lose your sense of humor . (When I saw your monicker I was afraid you were living so rural because you were in the witness protection program, even though you claimed you weren’t a snitch 🤣)
Men in Lewistown do get this stuff. Once I had my diagnosis, others with it, nearby, came out of the woodwork. About 1/2 of all men will have it sooner or later. There is a lot to do that will help. Just this week new research came out that showed great results. Ask about the Peace1 study just released at the big Oncology meeting last week. It showed that in addition to Eligard (or Lupron - the same thing), a combination of chemo plus plus pills (abiraterone) may be twice as good as just Eligard and chemo, for men with metastatic disease, like in bones. If it's only a few spots, radiation may be part of the mix too. Make sure the biopsy gets BRCA testing and PL-1 testing. Those will influence other treatment besides current standard of care with androgen deprivation (Eligard or Lupron), chemo and/or abiraterone, and androgen receptor blocker (like Xtandi) among other things. I am 3 years out from diagnosis and the new treatment comes up all the time. My PSA went from 148 to 0.16 with the early treatment with Lupron and chemo and it's now 0.13 with addition of Xtandi. I have moved on with my life in retirement, traveling, spending time with friends and family, and doing things I enjoy. I still feel fit and well and I'm looking forward to more good stuff. If I were starting now, I would ask my doc about Lupron, chemo and abiraterone (again, see Peace1. Ask the oncologist to look it up from the ASCO meeting). Stay on top of it and take care of your health overall. Stay physically active. Check in on this site for questions. I have found Tall Allen especially reliable and informative.
My advice would be to buy some books on Amazon or other online bookstore. That's what I did when I first learned I had the beast in 2008. What seemed really good of the several books I got was "Patrick Walsh's Guide to Surviving Prostate Cancer" Seems it has been updated in 2018. Just thumb through the book or check the index on what you are thinking about day-by-day if you aren't a steadfast reader. Other than that, Scardino's book seemed good to me but there are many others. You might also google whatever comes to mind as you go through it. Don't take every word as gospel because every case is different. Being with bone mets you might go to other books or online sites. Read carefully the med sites for the meds you are taking. Pay attention to the diet recommendations and try to implement them into your life. Having 5000 steers and being unable to eat beef is a bummer but you want to survive, right?
Also try heat pad and hot showers on spine. 106 degrees kills cancer cells.
Keep working, keep living and don't become the disease. You sound like you have a good Dr and he will likely welcome specialized help from bigger centres. This site will help you so much with well researched, thoughtful advice that is always centred on the life of the individual. Stay strong and stay connected as you now have many brothers in your life. You are not alone and sometimes that is simply enough to know. Post any questions, no matter how silly that you think they are as we have all asked them before. Good luck on your journey.
You got this!! If you have a significant other...... be as kind as you possibly can. These drugs can change how you treat them. Don't allow it. You may have to start thinking before you react. Best wishes.
🌻
• in reply toerjlg3
❤️❤️
Welcome to this site. You might want to consider asking your doctor for tamoxifen to combat gynecomastia. My eligard (ADT) shot created that problem for me -- boobies. I even had the indignity of being subjected to a mammogram. Gee, wasn't that fun.
It’s a ride on a mean-ass mule. Hold on and don’t forget to whoop every now and then. I also have an unrelated lung disease which will probably take me out first (I am 73) so PCa is just a nuisance, but it’s A hell of a nuisance. I get my treatment through VA so I feel sure I’m not enduring unnecessary treatments. Standard stuff. Chemo, Lupron, Xtandi. Because I also like to think I can do something on my own to help I do intermittent fasting which in my opinion shows some promise in starving cancer cells. So did the Nobel committee a few years ago. Worth a little personal research I think. I also take Turmeric to please my wife’s feeling that she can help. I know only a little but I do know treatment has helped me stay alive these past four years. And no matter how tough it has been it’s not as bad as a catheter up the old Johnson. Once was enough for me.
If the boys you referred to are your sons they need to be educated about this disease and start monitoring their psa. Having a father with the disease doubles their risk getting it
Not_A_Snitch, so much good guidance here so far... but I'll add my perspective from being the wife of a member of the "PC club."
If you have a spouse/partner/significant other (SO), she is going to be making her own journey at your side. This site isn't just for the guys: she can find support and information here, too.
The most important tool in your toolbox when it comes to your relationship is communication! Start off talking about everything: your hopes and fears, how this is going to affect your relationship & your sex life, everything. Put it all out there. Keep talking. Keep listening. Be honest with your spouse. Be patient and kind with each other, as much as you possibly can. This terrible disease will put you both to the toughest tests of your lives, but there is also the opportunity to grow closer in ways you may not have ever imagined possible.
And: it's not a death sentence, far from it! Even at stage IV, you have a chance at many more years of good life. There will be really, really rough times, and there will also be times when life is the sweetest it's ever been.
Ask for help, even when you think you can do it alone. Your family needs you to be strong but they also need the support of other family members, friends, and your community to get through this.
Blessings and strength to you and your loved ones 🙏🌟❤️
Nobody likes a rat....pc is a rat.....im waiting for j.o.h.n. to chime in. You might inquire to adding erleada to the eligard/ lupron...you say you work a farm thats hard work ...but believe me you need to get tje heart ratr up... and watch the potatatoes....lifes about to change but with good team of docs and the braintrust here...the ridd can be as smooth as possible. Start doing some things for you! Buckett list stuff.....bw
You didnt say if they did a biopsy. For a diagnosis that is mandatory.. Did they do a DRE? I guess no one gave you a routine PSA test. You presented with symptoms which could have been avoided. But we dont have a complete picture. Its just a stop gap at this point.Make sure they send your biopsy slides to 3 known pathologists. We hope you are hormone sensitive and the cancer can be rolled back and managed for a very long time. I have 17 years in it and I want to help.
You have received great information from this group. The only small thing I will mention, as someone else already has, is the tamoxifen to help prevent "manboobs". I wish my doc told me about it when I was diagnosed 9 years ago. I am thankful to still be kicking around but I HATE my "manboobs" I use to go to the beach all the time in the summer. Since my treatment, I haven't taken my shirt off in public. I know I shouldn't be self-conscious about it, but I am. I wish you the best.
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