49, just got diagnosed last Wednesday. Go for Bone scan and CT tomorrow. Gleason 8/10. PSA was a 5.4 two months ago, 6.7 now.
Of course worried about the whole bone thing. Not looking forward to drinking the barium (vanilla, what a joke) tomorrow (so gross).
I'm kind of addicted to this whole breathing thing. I'm trying to find out survival rates for PC that passed to the bone. My doc said it was "aggressive". Well guess what buddy, I am too....
Is chemo as bad as I think it is? Does radiation destroy everything it touches?
Doc spoke of Estrogen treatments, great now I'll be going from action movies to romances.....
WTF? I'm 49....
Yes, I'm a noob to all of this. Pardon me asking so many questions. Thank you.
Written by
YouGottaBeKiddingMe
To view profiles and participate in discussions please or .
I hope you "pass" your tests I failed mine. 4 years ago this August. I tell everyone "nobody in going to work harder to keep you alive than yourself". Prepare a list of questions. Challenge your doctors. This site is a great source of inspiration and information. Good luck. Nothing wrong with a 2nd or 3rd opinion.
All you can do is deal with it as it comes. If you try to imagine future scenarios, you will just cause yourself unnecessary anxiety. I went for psychotherapy and Mindfulness classes upon receiving my diagnosis - they helped a lot.
Why are you drinking barium for a bone scan? in fact, you have to avoid barium and bismuth (pepto-bismol) before a bone scan. They inject a technetium radiotracer. It's only natural that your mind is racing with questions, but try to only focus on what is in front of you at the present moment. Let's see what the scan shows or doesn't show and take it from there.
Yeah, I hear ya. They're doing a CT scan on the same day (while waiting on bone scan to run through system), lower abs/pelvis. Guess they're having me do the bone dye, then to the CT. Should be interesting doing it on the same day. Yeah, also considering doing nothing, don't want to run up debt for the wife. We have insurance (Good job), but still would be a lot. We also of life of course, I would hate to see her have to use it to pay off medical bills when i'm gone.
I did this scan a couple days ago . Your body gets a little warm and you glow for a bit. No barium. Your advice given to our young friend is sage. You are on point as always.
I too was 49 when dxed with aggressive prostate cancer Gleason 10, so I know the feeling,I am 61now soon to be 62. You can see my bio in my profile Lets hope you get a clear bone scan, and go from there. Wishing you the best. Learn all you can, Knowledge is power. I am curious what estrogen he was talking about, as Estrogens have not been up front treatment in a while. Keep us posted on the bone scan
Will definitely do so. Waiting game for now. He mumbled off a bunch of treatment options, but all I heard was you have "prostate cancer"...lol. Need a dang tape recorder. Would have to look up half of his 50 cent medical terms anyways
You do absolutely need a tape recorder and a person to go with and take notes. I know very well how it is when the Dr. says the words “ You have Cancer” Often the automatic response is to go deaf, dumb and blind. I wish you the best.
Absolutely, download recorder app on phone . That's what I did for both my parents onco visits. Easy to forget when shock hasn't worn off . Read up on therapies so you have educated questions. Write them down and bring list to doctor. For now hoping your results are good and that you just keep riding, and doing what you do.
You need a translator for this stuff. You’ll be well versed before you know it, and handing out advice to other noobs. I was type A, go go go .. This will slow you down. .. I went from 53 to feeling like 83 overnight. They gave me 24 months on adt and 12 with chemo of which I skipped and did 5days a week for 2months...of targeted Radiation all of these treatments have side effects that we will be dealing with for the rest of our days. 50cent, that’s cheap. I’m here with Psa< .04 and no signs. I hope the same for you and good results or better after treatments.. this is a war of attrition and capitulation between ourself and APC . Keep active ,sane and happy.... tomorrow is not a givin for any of us.
I suppose it was prayer that gave me more time. I did seek out the best Medical Oncologist I could find, and immersed myself to learn all I could. I have always been in a support group like this one. I really did not do any supplements consistantly. I tried to eat right giving up dairy fat , egg yolks, red meat ect. I tried to keep doing the things I did befopre I was diagnosed. Are You in AK? I spent many years in the Chugach region.
Try not to pay attention to statistical survival rates. They don’t really account for all the new therapies from the past five years or so. I’m 54. I’ve had visible bone mets for nearly eight years. You sound like a fighter. Let us know how you’re doing.
My Best Good Wishes for you and your family. Be kind to your wife even when you feel bad. Include her. It makes me sad that you have to worry about your family's welfare or your life....it should NOT be this way.
As men of course we worry about our families without us. We also should be kind during this ordeal not to take it out on the innocent ones we love. I’m guilty of that.. but improving.. take care erjlg3...
Your situation sounds very similar to what my husband and I faced 4+ years ago -- when he was diagnosed at age 52 with aggressive stage IV (bone mets in the spine, Gleason 9). Your "handle" has it right! "One day at a time" is no longer a quaint saying -- and it is good advice -- or at least one step at a time.
Here is what I can share from our start:
1) Get a notebook. We found a nice one with a special picture on it (so we didn't absolutely hate looking at it). Write questions before your visits and take notes during and after. I also always write down vitals and PSA each time -- makes it easier to track.
- parallel with this, get an accordian file to keep lab results and scans and all that organized. Again, comes in handy when you see someone new or you are trying to track what's happened.
2) Involve your wife. We always took the approach of going at this together. It's not always easy and the "together" part became challenging later (mostly side effect of certain drugs I think). But she's going through a lot too, already. There's a caregiver subsite for Prostate Cancer caregivers that she might find helpful.
3) Keep breathing. Do research. Even the most aggressive prostate cancers, I think you can take a little bit of time to sort things out and make your best plan.
4) I'm always recommending this to people on this site, but it was one of the best things we've done and continue to do: See an expert consultant. Shortly after we got all the scan results and had started standard treatment for advanced PCa, we consulted with an expert at UCSF (which is 2000 miles away for us) -- Dr Eric Small. He had read through everything and he came in to the appointment and first, got us to relax a bit, gave us a sense of the big picture (and fairly optimistic as there are lots of new things coming out for PCa), and then gave a reasoned recommendation for immediate treatment. We felt sooooo much better after this visit. We felt like we had a handle on things when it really seemed like WTF . . .
5) since you mentioned this -- check your insurance. You may have a max out-of-pocket amount per year. If not now, but you have an employer plan, you should be able to switch plans during open enrollment, so look into that. See a financial advisor -- get recommendations from friends if you don't have one. Fortunately I had one, and he had some really sound advice and recommendations for us. When you're ready, see a lawyer and get a will or trust if you don't have one. These actions actually (I think) can give you a sense of control when there's so much you feel you are not able to control. And it's good. Really, for us, we had been "meaning to" do a will for years, and a "living will" too -- so it was just incentive to get it done. They are good things to have, cancer or no cancer.
It's a scary time at the beginning - so much new info, so much in flux, just kind of dazed and confused. Actually I look back at the first few months and the scans and all that, and I honestly don't remember how we got through it, but we did.
When you find out your doctor's recommendations, seek opinions here. I didn't find this site until we were a couple of years in -- and it's been a lifesaver for me at times (esp. the caregiver stuff that has hit sometimes).
Wishing you the best bone scans you can get! You will get through this,
Hi my name is Chad ram and I am from India. I got diagnosed last 18months back with Gleason 8 stage IV metastatic spread in lymph node, vertebra etc. Do not worry and just accept first that prostate cancer IV stage is not curable but at the same time this candidate be treated and many individual in this group are living from many years.
I was 54 when I got diagnosed. I am confident that I can live many more years with latest treatments . Have faith in God and also your MO. You can have second opinion also on the treatment you have been suggested. Wish you a good response and healthy life.
I was diagnosed 5 months ago. Surprise - Surprise, stage 4 in my bones lymph nodes plus other places. Found out how bad I was when I went to the ER getting 4 pints of blood to stay alive. PSA was 851. Got an oncologist at the hospital, ended up getting the chemo shot plus Zytiga, prednisone and infusions for the bones to protect them. Had lost weight, couldn't eat much. Guess what, PSA kept dropping, blood continued to improve, gained 10 pounds and I'm as active (very) as I always was. I'm 66 yrs old. Yesterday spent the day cutting and hauling firewood. I take my meds (calcium pills too) and ignore what can happen or how bad things may get. I know I'll die someday, from something, maybe from the cancer. Maybe not. I'm going to have a ball and do what makes me happy. They have all kinds of great treatments for prostate cancer. It is a slow type of cancer, so I was told, and I'm going to think that they can slow it down to a crawl so I can enjoy a bunch of years of fun life. Hope this info gives you some encouragement. Lincolnj
To lincoln8 , you have a great perspective and outlook.. have a ball and do what makes you happy.. Good job!! That is inspiring. Can’t let APC trample our spirits ...
Love your attitude. You mentioned a chemo shot. What is that called, because I only know there are pills and rounds of infusions. Educate me please and keep rockin your recovery xoxo
Getting a Lupron shot in the butt every 3 months. Every month I get an Zometa 30 minute infusion that keeps my bones strong. It counters the effects on the bones from the Lupron shot. Also taking Zytiga and prednisone daily. Also taking vitamins daily also. Calcium + D3 vitamins daily. So far doing great.
Hey 49. I was 54 when diagnosed. Same. No mets pre surgery, but mets found post surgery. I was in good physical shape at the time. Chemo isn't terrible if your otherwise physically healthy going in. Stay physically active despite diagnosis. It helps.
My husband was diagnosed a 49 this past August. PSA around 700 after diagnosis, Mets in pelivc lymph and spine. No pain though. He was diagnoised after a TURP his urologist did for a supposed benign enlarged and not having had a PSA before. Had you had issues that caused your doc to do a PSA?
I agree with everything caring7 said. We have done all of that. I also keep an excel spreadsheet of the lab results. I follow and track each important result. Along with how he is feeling and any other thing if note- so we can let his team know. He is on Lupron, finished 6 rounds if Taxotere in Jan (was not as bad as expected) and now on Zytiga. We also have him eating as nutritious as possible to keep his immune system powerful and he works out 3x a week and is active with our kids and in the yard.
Having someone go with you to all appts and keep good records/ask questions is key.
But also- love life. Enjoy each day as much as possible. My husband is feeling good so we try to enjoy each day despite the bills, cancer, and three teens (🙄). I have a bit of time I allow myself each day to research and read these forums. After that- I focus on life.
This group is fabulous for support nut also for concrete amazing advice and info. It's been so great to learn here.
Along with the great advice from this site, buy "Prostate Cancer for Dummies" and read it cover to cover. It is constantly updated so it will have current treatments plus you will soon learn all the terms and their abbreviations in this new world.
Aggressive cancer requires aggressive treatment, managed by a Medical Oncologist who specializes in your disease. Quality of care matters. Once you have decided on a treatment path, don't look back.
Dude, breathe. Sorry you're here, but welcome. No, chemo sucks, but it is not that bad, and you get over it. I got it when I was 50. (dx 44) They are very precise with radiation now and don't burn up everything in sight. Don't look for survival statistics for this disease, everybody is way too different. You are young, which is an advantage, and fortunately, there are more treatment options all the time.
And I have found cursing a lot helps me. FUCK CANCER
Lol.....im navy, cursing is natural. At hospital now for the tests. 4200 buck out of pocket, and i have good healthcare....well....Sprint says it is....lol. paid 10 percent. Hmmmm new car or bone scan and ct. Total is 29k.
Holy Crap ... I am suddenly really, really glad I live in Australia. I'm on a pension as my Superannuation all but disappeared in 2008, and from my diagnosis in 2013 aged 63 to now, with stage 4 and mets in spine, ribs, collar bone and lymphatic system, including ALL treatments and drugs, my out of pocket expenses would be no more than $3000 tops, which also includes accommodation and fuel for the 1500km round trip. ( I've done about 10 of those) I am on Zytiga @ $3306 per month and it only costs me $6-80, and the oncologist costs me zilch!
Aside from all of that, hang in there cobber, as scary as it feels right now, it feels a lot better once you know which direction you are going and what you have to do!
Involve the missus, and take on this bastard of a disease together. It helps her to cope as well.
My angel feels more able to cope if she is fully involved, and quite often asks questions at appointments that I have forgot to. She acts as my secretary/treasurer/booking agent.
As scary as this is for us guys, I reckon it's even worse for the wives.
Stay strong and positive, and take on life like a Jack Russel terrier ...if you can't eat it or screw it ... piss on it and walk away!!
I reckon you are right about the spouses. There happiness needs saving also.. glad your system is doing you right. No one should be in a position not to get the best treatment due to funding. Happens here all of the time.. For a wealthy country you’d think it could be much better.. 100 yrs ago a guy would just die in the ditch fromAPC and various other unknown diseases or just a simple infection without the invent of anti-biotics. We ve come along way. .
Damn! I still owe Mayo $11,000 for my scans in 2016. Insurance fortunately covered my chemo and Lupron, minus my $3500 deductable. Good luck today, keep us posted. You've found a great community.
I had that good health care and spent a boat load my first two years.. Many trade offs have come our way but adjusting to anything is possible if you are living and breathing.
Hello and welcome to the Brotherhood your treatments should be tailored to you unfortunately advanced prostate cancer sometimes says yes to the challenges it's given so a positive outlook which it sounds you are on the way to accomplishing is its worse enemy. The group you have found has a wealth of information so read and learn about all of our battles. My Gleason score was 8&9 across the board with bone mets and lymph nodes. My Doctor started me on hormone therapy ELIGARD injections along with Zytiga PSA went from being a 14 to 0.1 in a matter of weeks only side effects were hot flashes which are tolerable. I feel better then I have in years hopefully it will stay that way for along time. Talk to your doctor ask questions, do research it's not a one size fits all cure but it's working for me. Best of luck Brotherhood in arms. Leo
Ty sir. Estrogen was not what i expected to hear from doc, but good to hear its working. Man, i thought I was just being lazy....now i can blame the cancer....lol
You can check my profile to see my "aggressive" approach, I was diagnosed 4+ years ago at age 55 - G9, metastatic to bones and nodes. Treatments are no walk in the park but beat the alternative. And despite PCa I still enjoy each day.
Learn all you can, get a good oncologist who specializes in PCa (really important) and be your own advocate.
Hey Ed .... that's exactly what I'm doing tomorrow!! Reckon I've got a shit load of casts left in me yet .... might even get to be a half reasonable fly fisherman...... if I don't break the thing in half and throw it away .. it's worse than golf!!!
Fishing worse than golf!? How so?🤕 Fishing is fun. Golf is painful! But I’m a masochist 😮. Regarding your high risk PCa you have lots of ammo. I’ve been very aggressive (see profile) and have it under control.
Hi Bob .. Bob here too! Guess we've got our 2 Bob's worth then! Not Fishing as such ... I just get really frustrated with fly fishing on windy days....
As a point of clarification, the hormone replacement therapy (e.g., Eligard) is meant to suppress testosterone production. This inhibits growth of prostate cancer cells, and while not a cure, gives the other therapies (e.g., radiation ) a chance to kill off the cancer cells, and potentially curing the cancer threat.
Only ONE survival rate matters -- YOUR's. Sounds difficult, but try to get and stay positive. THIS is a BIG DEAL but PMA is best all around. Took me several months to now two years to realize how much happiness I can control. Best wishes and good luck to you!
I’m a work in progress .. just ask my wife... i didn’t even know what PMA stood for without you telling me . I’ve worked with a BMA for far too long. Everyone that knows us are the beneficiaries of PMA . Not just us. Thank you and keep up the good life!
I was diagnosed last year with a gleason 8, 1out of 12 sample cores from biopsy was positive. PSA 7 then went to 9. which meant I had aggressive too. I had received the Lupron hormone shot and radiation 40 treatments. the shot stopped the cancer and radiation eradicated it. my PSA last two times have been .1
I am in remission , but I did catch my pc early, sounds like you did too. God Bless!!
Early is important .. I didn’t catch it , it caught me and almost killed me. My own doing , by being my own doctor and my own stubborn ignorance. I too have no visible signs, if my scans come back clear on 4-30 , likewise a low Psa< .04 I hope. Still I don’t use remission or cure. I look at it as a successful first round that could have been the death of me. This is a continuous project for life for me. There can be many chapters in the saga once a Stage#4... Count our lucky stars every day without brutal pain. Build your strength to counter osteo and cardiac risk now greatly increased for us. Enjoy life... it ain’t over until the fat lady sings.... And I feel that that’s not anytime soon for you.. Make the most of this time that we are given..
Lots of good advice and personal stories here already. As people mentioned, get more information about your specific disease (genomics profiling would be great). Go to a reputable cancer institute if you can (Mayo, MDA, MSK,..) and build a medical team around yourself (cardiologist, urologist Rehab, etc..). And because of your age, I would look into he most aggressive (and sensible) treatment your body can tolerate. Look hard into your diet and exercise regiment - and last but no the least, stay on top of your mental health.
Also learn about the current standard treatments, and what's in the pipelines, and learn about the supplements (This site is a treasure trove for those). I know it sounds like a lot, but as you go thru the experience, you'd get a lot more comfortable with it.
Do not pay any attention to the published prognosis. They are backward looking and outdated. New treatments are coming out at an accelerated pace. This is the beginning of a very long journey for you. Keep us posted
Greetings... First of all, chill out. As suggested above, bring a tape recorder or a scribe (your wife, if she doesn't want to go bring your girlfriend) to every consultation with your doctors. As far as romance movies, try pornos. Don't worry about window shopping for a new car cause, soon you'll be window shopping for ladies shoes. Buy a training bra. But most of all listen to the astute gentlemen and/or their caregivers here. And I'm not kidding you. My story is that I looked up at the sky and said "but why me?" A booming voice from above replied "CAUSE YOU PISS ME OFF".
Tank da lord for the woods! If it wasn’t for the trees , no oxygen , therefor no us.
• in reply to
I live in a giant Saguaro cacti forest.. A different type of woods , but we love it.. too.. appreciation of nature is the best APC drug that I’ve found so far..
John..that is huge..you got God to talk...normally he only listens...11 months ago I asked for help with an oil stock in Brazil that I have been unable to sell..just got a big check today...He takes His time but He comes through...but if you piss Him off you get mCRPCa with a doubling time of 3 days...so, you may be in trouble
Lips only.. what a square... I appreciate a fine pair breastisess. I used to consider myself A leader of men and a follower of women. Now I’m no leader, but I’m still loving my wife’s ass . She’s a foxy momma and I’m a lucky S O B To be with her.
Stormy weather!! On all sides just living for the days the fog lifts .
Welcome to the ranch amigo! A place none of us wants to be.You are not alone in this. The fact that you found this site so early on will be to your extreme Beni fit. I found it after 2yrs of no one to talk to about this sociopath APC .Its out to eat our manhood alive. It takes Frankenstein’s formula for us to survive along side APC. . Keep humor in the front of the lobe... your youth does give you the strength needed to do what must be done to live and love family and life to the fullest. My dx was 3yrs ago I was 53 and my then love (now my wife ) we we’re both devasted by a bad prognosis of possibilities.. stats from the dr are just that. My opinion is that you can live decades if you do everything to help yourself from this point on. I changed everything..it’s a new life and I’m telling you that you will live and adjust in order to walk this earth .. fear and self loathing have taken up way tooo much of my past 3yrs. Don’t waste you precious resources on that. Do as I say. Not as I’ve done. Ive gone thru every range of sadness, depression , suicidal thinking. Save yourself and your family from that. I belive from your own words that you could be the one to conquer this bullshit. I’m tracking your progress.. it notgoing to be a walk in the park .. but it beats pushing daises!
To YGBKM, sorry I’m lazy... we need to find a zen mode because we are being zapped of T.everything will change. So get into your own path. Do whatever you think is right. Don’t listen to negative reports or stats . APC is a steamroller.. Keep getting up and roll back. Also you will adjust and roll with the flow. If that takes putting on a moo moo and baking , so be it. Don’t let APC define you as a person. It’s just our lot . Go thru greiving but don’t get stuck. Peace in the madness. Keep the faith in what you belive.
I am dumbfounded by the amount of responses to my post. I really appreciate all the kind words and the wisdom from the group. Was really surprised that the site was this active, but it also tells me, "There's a whole hell of a lot of us dealing with this stuff"!
Hell to pay by the male population and their spouses .. Epidemic rings true.
Welcome dude.....you have arrived at a good place. There is something for every man that carries this weight on this site. Take from it what you need.... I hope things go well for you . May God bless you and give you strength... Keep smiling and most of all, FUCK CANCER
don't ever say fuck cancer...the last guy that did was cancer sucks and 3 weeks later he was dead...last I read our friend Mr. Cancer has killed 1 billion people
Hello, I am 51 years old and diagnosed on 08/17. I continue in the mental turbulence of accepting this new situation. But I'm progressing and stabilizing my thoughts. Since the beginning my obsession has been trying to be the best I can physically. I have made a daily routine of walking at the maximum pace I can, I have no difficulty in being 2h with good physical activity.
I have changed my diet. Mainly I have introduced more vegetables and fruit. And I have removed red meat and sugar.
My current medication is Zytiga + Prednisone.
Where I started last August, with a PSA of 1300, weight loss, back pain, etc. And now I have recovered 17lb, lowered PSA to 0.20 and no pain from the beginning.
Turbulence ! Nice word word for it. I relate to that.. I’d say that you have the right spirit and attitude .. Very refreshing in this sea of turbulence . It sounds to me that you are on good path . I wish you continued good days ahead..
Thank you very much Lulu700, very difficult to accept. It has stopped me and totally changed my life. My job was a professional basketball coach in Spain, I had to leave it. But it is necessary to fight to continue living good things.
good luck
Ygbkm, that’s does sound like a demanding and rewarding career. Viva Espana!! APC is life or death to me. We’re here to live not to die.Im a fan of the greatest race tv show A recent episode they were in Prague and the guitar from the local famous author was . “The meaning of life is ,,,,that it ends.... at first I thought , that’s morbid . But in my translation I took his words to mean ..Life is brief..Make the most of it. . We need a strong reason to live in order to endure the hardship and losses associated with APC treatments and their side effects. mine is my Persian spiritual advisor on blushing bride. I need nothing else but her love. We’re all going to check out of this hotel someday . Give and get love while here. May sound feminine ,but that is the best female characteristic that we need to promote...and one of the greatest .Like the Beatles said. “ Love is all there is . You will get thru this .Keep up Your physicality and you’ll be around to enjoy what’s really important to you.
You impress me as a fighter, survivor. Survivors survive. And you shall survive. Slow the pace of the game. Take all available pathology and medical opinions into consideration before to deciding which of several clinical paths to take. Gleason 10 is yes, aggressive, the most for prostate cancer. However, by definition, prostate cancer is a slow growing cancer as compared to much more rapidly lethal cancers like pancreatic, lung. You did not mention any suspicion from the biopsy that there has been some regional metastasis. If the cancer is in fact contained entirely within the prostate gland, then it is possible a radical prostatectomy would be curative.
Lol. Love your personality and nice bike btw which you'll be riding for many years to come. These guys are amazing some 10 to 15 years past your diagnosis. My dad was ok on chemo until his last two treatments. But he had a bad response and had to stop nevertheless lupron, exgeva, docytaxel chemo, and in a year and half cancer has not progressed. He'll also be doing immunotherspy. And estrogen is an option. For any femine side effect, such as breast growth there is a med to stop it.
Now will you be crying at romantic movies, well only if you are a sensitive guy. . it's menapause...in this case manapause, so hot flashes,needing something to sleep and irritability do occur but not one man on here turned into a girl, so I think you'll be fine. Lol. If you start wanting chocolate and binging on romcom, then I have to kick your ass, because that's my turf, and I don't share my chocolate.
You have an excellent attitude and it will make all the difference. Xoxo
Found some good news today. It's not in the bone as per this report that was released on the hospital's website. Haven't met with doc since bone and ct scan, but found this on the portal. That's a plus!
EXAMS: Reason::
001670871 NM BONE SCAN WHOLE BODY C61
Bone scan
INDICATION: Prostate cancer
TECHNIQUE: The patient received 21.83 mCi of technetium 99m MDP via
the left antecubital vein. Whole body planar imaging was then
performed
COMPARISON: None
Findings there is normal, symmetric renal activity. There is no
suspicious focus of radiotracer accumulation on today's examination.
Activity in the acromioclavicular joints bilaterally is likely
degenerative.
IMPRESSION: No scintigraphic evidence of metastatic disease.
oh yah! Thank god. That’s what we want to hear. You may be coaching men some day how to live life with APC with happiness in your heart .Its a tuff road. But it’s possible to eeck out some hope and joy while under this APC umbrella. Take this standing up ... whatever comes up. You ll handle it . God bless ..
Just thought I'd chime in, better late than never. I was diagnosed 2 years ago age 49, Gleason 10, multiple bone mets. It's a rollercoaster of a ride, so hold on. Learn as much as you can, question everyone and everything and become your own advocate. I'm convinced PCa will change from being a killer to a manageable disease, I just hope it happens in time for all of us here. You've found a great support network, best of luck.
Got my Robot date. May 29th. Guess they're using the robot to go in an take it out here in Atlanta, well north of Atlanta. They're saying only one week with the cath, less side effects, and better healing with the robot.
I've had my "issues" with opioids (Vicodin) in the past. Let's just say "I didn't hate them", like I do now. I know I'll have to use them, and to be honest, I want to on this one. I'm not doing this Rambo style, F that. Luckily it should only be short term (in the hospital and guessing the week of the cath). Doc said there shouldn't be any detox with the short term use. Which has me as nervous as the surgery itself.
Anyone who's done the detox thing knows where I'm coming from. Never again.
I'll do the whole play by play thing once they take the telephone pole out of my @#$%....lol.
Doc says this with the incontinence:
3 months - 70% of people have it
6 months - 50% of people have it
9 months - 25% of people have it
1 year - 3% of people have it, and get to keep it. ARgh....come on man...cut me some slack...rofl
Hahaha, what? They take that poll out? Thought it was permanent. You just might be the guy that does not have bad incontenece, I’ve heard that they can give you physical therapy and kegal exersises to help incontenance. You ve got bigger fishes to fry. Like suppressing PC. #1 . It’s that basic . We choose to live and take treatments over doing nothing at all . We all suffer basically the same . Break those stats and projections that you might hear. You can take excellent care of self and in my view change your odds of successful treatments and longevity. Peace
Here's what I've learned. You have a set of muscles that you don't know you use, but you do, between your prostate and your bladder (actually in the bladder). When they take the prostate, they remove a piece of your bladder as well. Unfortunately, those involuntary muscles come with it. Those muscles open and close your bladder without you even knowing it, but you have another set of muscles that pretty much lay up against the back of your "junk" on the outside of your pubic area.
That's the one you've/we've got to master. That's the one that let's you cut off mid stream when you're trying not to over fill the cup at the docs. That's the one we have to get good with in order to not wear pads all the time.
I'm still learning, but getting good at using this set of muscles will definitely help with incontinence issues. I'm guessing the time table that I was given above is a person learning to use that set of muscles, but I can't be sure of that.
I'm just regurgitating what my doc told me. I honestly don't know, and won't be able to tell anyone first hand until the "telephone pole/cath" comes out.
Oh one more thing, I asked about the mental aspect of all this and the guy looked at me like I was a freak or a sexual predator. My question was pretty simple. If you have ED, you can't reach orgasm. I brought up the suicide rate for men that have been castrated, and asked if this was in line with that. I said, "Guys are visually stimulated, and sometimes when a man is stimulated, he wants to "get rid of the feeling" be it masturbation, sex, whatever. I asked what happens when you can't do that. The guy looked at me like I was some kind of rapist. Kind of pissed me off. You're supposed to be this famed robot doc, but no one's ever asked you about this????
I don't think he fully understood that I considered the arousal a burden some times. My wife has IC (Interstitial cystitis) and that limits our sex life as it is. I'm not saying, OMG I need to have sex all the time. I'm talking about reality. You see a picture, video, ect.... if you can't get rid of the urge/feeling due to ED, how does that weigh on you as a person? Why is that such an odd question? Don't tell me it doesn't impact a person. I don't buy it.
He said that removal of the prostate will end ejaculate, but not the orgasm. Ok, that's great, but if you can't get an orgasm due to ED, that's a cruel joke/issue. He said, don't worry. I can fix any ED even if it's a pump. I do not want my junk to be controlled like a Nike Air Jordan, pump pump it up....
Anyways, I was only asking about the mental weight of this kind of thing and the guy looked at me like I was a goof. In all fairness, my wife was there and said she didn't quite understand what I was saying either. I don't think either of them got the fact that I consider arousal a burden. I described it as a "tax" for seeing something that arouses you, but obviously that was the wrong word to use. I should have just said "burden". There was so much going on though, it's hard to think straight. I should have written out the question before I went, so I would have been able to get my question across without looking like a sexual predator. Grrr, this stuff is such a pain in the ass.
My understanding is that you will not even get an "arousal". Once you have your surgery, those feelings will more or less vanish. Like it or lump it.
Correct me if I am wrong, folks.
Whoa nelly! Hold on to the reins.... you probably had double the macho of the regular guy...I know what youre feeling . I was 53almost 54 . That’s been 3yrs now.. Da Vacini, Mama MIA!!! Good luck ! You’re caught up in the whirlwind right now. A scary thing facing a terminal cancer. Honestly, you are going to kick PC now and if lucky you’ll suffer treatments and their CRZy life changing side effects . You might cry when the wind blows . I went thru fear and self loathing, why me? Poor me .,, even suicidal thoughts as Im no longer the man I was. This is surely true. My body and my chemistry are permanently altered. So acceptance has taken me 3yrs. Maybe you can adjust more quickly. I believe with good Drs advising you that you will break PC out of your system for now and keep it down for decades. In that time something better will arise maybe even a cure for young men trailing behind us. You are so young that I believe you and I ,,,if we take care of ourselves we should see some advancentsin the meds.. welcome to the twilight zone.. you’re going to live long riding along with the rest of us in the same raft.. Treatments suck for some ,for others theyre not so bad.. Do what ever you feel is right to live your life with enjoyment and quality of life.. I still have my prostate. Can’t say much about surgery. Being that you are a candidate speaks well for your projected success of the da Vinci. Good luck young man. You can do this? Doing nothing is not an option... Love your life ..ygbkm.......keep,truckin!
Sorry about that. Praying it s going well... wow May flew by. Hope your time in recovery will show that you are done with APC. Live long and prosper ..
Your not alone. I was Gleason 9/10 at 46 PSA of 30- now 48 with a PSA of 0.1. My initial treatment was hormone therapy (Lupron), radiation and chemo. Radiation is not bad and probably saved my life. I did pretty tough chemo and that sucked, but I was strong and otherwise healthy and did fine. I hated chemo but bounced back super strong when that was done. Here is my post treatment plan - Drink lots of water, low carbs, no simple carbs, no sugar, good diet, more plants, red wine and strong black coffee. Most important exercise ever damn day weights and running till you sweat and your muscles are tired. loose any weight you can. Personal commitment and follow through key - don’t rely on doctors only, it takes personal work.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lu177 expeiences in Germany
PSA stable but Cancer spread to liver
PSA Testing Intervals
Two questions re Prostate systemic disease.
