Urologist gives me 2 years to live...... - Advanced Prostate...

Advanced Prostate Cancer

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Urologist gives me 2 years to live.....what????

Bradblue profile image
Bradblue

So let me tell you my story and ask for your thoughts. Diagnosed September 2020 with PC Gleason 4x4=8 on 12 cores out of 14. PSA was 43 which is what triggered everything. Just turned 59. No symptoms, only caught on routine physical. Never been to the doctor before for any condition. (daughter asked me to go to the doctor and make sure everything was ok) Never on medications. Very active lifestyle. So here is the story. After the biopsy my urologist was disappointed he would not be able to do surgery. Decided to go with radiation. with only the above information my urologist told me i have less than 2 years to live. Had a bone scan after that diagnosis...no mets. Met with radiation oncologist and he said 25 sessions and I had a 60% cure rate. got a 6 month shot of Lupron. Blew through 25 sessions...no problem...no side effects, nothing...I then was set up with brachy which was performed...50 seeds implanted...again no problems...a little burning with urination but that's it. Brachy oncologist says i have a 80% cure rate. very mild symptoms with ADT...mild hot flashes and I'm getting puffy...but still on my elliptical and lifting weights and working around my farm...so yesterday I'm scheduled for my next 6 month lupron shot. Go to the appointment...urologist asks how im doing I say im great....and I ask again about his 2 year death sentence again and he says he is sticking to the statement. I am devastated... I am doing everything I should be doing...I feel great no pain etc....i don't get it....what does he know that is not telling me....even when i asked him he just said nothing. I am a very positive person and always think i can win....but now i cant stop thinking about dying in less than 1.5 years....what am i missing? I just don't get it! Getting my first PSA - testosterone test June 1 since radiation and lupron shots to see where we are....thanks in advance for your comments. I appreciate this site....has helped me for sure! D

104 Replies

Welcome! No one really wants to join this elite group. My first Urologist said that I had 5 years. My wife and I fired him on the spot. That was 7 years ago. Find a good medical oncologist whose goal is keep you alive with a great quality of life. You have many options. Don't be afraid to get multiple opinions or travel to hospitals of excellence. Take control of your care. You will work harder to keep yourself alive than a doctor with several hundred patients. Keep informed. This forum is a great place to learn. Remember everyone is different and responds to treatment differently. Keep a positive attitude and enjoy life. Good luck!

Bradblue profile image
Bradblue in reply to noirhole

Thank you for reply. So i have not been able to talk or meet a medical oncologist. Supposedly their is one as part of the team University Hospital (Cleveland) but it seems everything is going through this urologist which has me a little worried. I can deal with his negative comments and just get my 6 month shot from his office but i do think I should be proactive and have some kind of plan if "what if" scenarios come into play....just my thought. Oh the other thing is he wants 2 years of adt....radition oncologist said 18 months and brachy said one year of adt.... someone is blowing smoke up my ........ i just cant figure out who!!!

WildRose6 profile image
WildRose6 in reply to Bradblue

Bradblue, sorry to hear about your experience. Sounds like gatekeeping to me... I'd make a stink about it, your #1 care physician should be a medical oncologist (MO), not a urologist.

It's unconscionable that as patients and advocates we have to fight the system to get the care we need for our selves and our loved ones, but keep insisting on seeing an MO! No one will fight for you like you can. Good luck and stay strong 💪

noirhole profile image
noirhole in reply to Bradblue

You may be able to go to the Cleveland clinic or at the university hospitals and ask them to assign to you a full care team that discusses amongst themselves to develop and track your treatment plan. My MO has a tumor board that has a Urologist, Radiation Oncologist, Medical Oncologist and a radiologist that meet as a group.

my.clevelandclinic.org/depa... is a self referral form at this link. I wasn’t clear if you were receiving care at the CC already but if not , you could try this. My husband and I have found other medical consults important to his decision making.

Vangogh1961 profile image
Vangogh1961 in reply to Bradblue

My urologist said much the same thing. After I saw a MO I realized it was simply out of his depth. Four docetaxel treatments in two to go, then radiation, stay on adt and then what next, according to labs and x-rays. But no talk of, time frames, everyone is different and responds differently. I've added since supplements after reading some good posts here. I still mountain bike on weekends and exercise bike weekdays. My time frames of planning are no longer years in the future, are more immediate for qol, but hoping I get there eventually.

That urologist is... pardon my French... a jerk. Who does he think he is, God?

NO ONE knows how much time you have. No one.

My husband was diagnosed only after his cancer had metastasized to "innumerable" bone mets, and five years later, he is still alive. He's decided to end treatments but we had at least three years we didn't think we'd have. (Thankfully, his oncologist never tried to predict the future and gave us no life expectancy numbers whatsoever.)

If it were us--unless we had no other options--we'd be shopping for a new urologist.

This ^^^

My urologist after horrible pathology report after prostatectomy and fast rising PSA gave me 12-18 mo. max. Looked right at the time..... now 4 yrs later I am still here... Don't think urologists have any idea. See your MO for treatments.... May you stay active and have a long life.... Life is good...

"Go see your Urologist and tell him you will be a pallbearer at his funeral in 10 years" 🤣

My urologist told me almost the same thing in Nov 2019 when at age 51 he told me that I had between two to seven years left on this world. Now my new oncologist thinks I could have 20 or more depending on how well I respond to treatment. Don't give up hope. No one truly knows when your time will be up. You could have more than a decade ahead of you.

Z06505hp profile image
Z06505hp in reply to Mascouche

Hi, I am new to this forum. I am 50 years old. I was diagnosed in March with Advanced PC. My initial PSA score was 216 and climbed to 400 in 2 months. My Gleason score was an 8. I just received an ADT shot(s) last month and am starting on Zytiga this week. If you don't mind me asking, what were your levels?

Mascouche profile image
Mascouche in reply to Z06505hp

Gleason 8 with small metastasis in the pelvic region. At the time of diagnosis I was has a psa of 79 and three months later it was 116. Got it down to 2 after water fasting for 18 days and getting a shot of Lupron but it eventually went back up to 55 or something like that and I can't fast for that long anymore as I am now fairly thin with not sufficient reserves. Longest fasts I have been able to do since I am thin is about 5 days. Started adding Zitiga to my Lupron a month ago and I am now at 5. Began radiation 4 days ago.

Z06505hp profile image
Z06505hp in reply to Mascouche

Thank you!! Your post gave me hope.

Mascouche profile image
Mascouche in reply to Z06505hp

Then I am glad to have written it as having hope is the only way to find joy in life despite anything it can throw at you. Don't you ever dare go hollow my good man.

Lulu700 profile image
Lulu700 in reply to Mascouche

Just get through it and recover well

.✌️

maley2711 profile image
maley2711 in reply to Mascouche

are there studies that show fasting to be curative for PCa?

MateoBeach profile image
MateoBeach in reply to maley2711

No there are not. And no reason to think fasting would cure PC. I do intermittent fasting daily for health enhancement along with keto diet. Perhaps it might slow the progression of cancer through genome maintenance and reducing inflammation. But not curing it. There are studies on short term fasting (36-48 hours) with chemotherapy infusions to reduce side effects of chemo.

Lulu700 profile image
Lulu700 in reply to Z06505hp

Good luck young man !

Work in our greenhouse everyday and getting ready to cut hay.... thank you for the encouragement!

Get yourself a medical oncologist who specializes in prostate cancer, at a “center of excellence” (typically a teaching hospital). You are being given incomplete and incorrect advice.

Ha Ha Ha Ha...Spooked you ! Buy more stuff now. My Onco told me 2 years ago that I may be gone in 2 to 3 years. That was on May 15, 2019. Its already over 2 years and I am alive and kicking with happiness and good quality life. Still walk/run 5 miles every day. Don't get spooked...Its not Happy Halloween.

😀😀😀😀

On a serious note: Telling a patient that he will live only 2 years is a risk management tecnique for Doctors..taught by Lawyers.

You mentioned Cleveland--I would make contact with the Cleveland Clinic. Or better yet to get a Name, Do a Post[Searching For a Great Medical Oncologist at the Cleveland Clinic]--that could be your title---and there are a number of men here that go there for their Pca.Again as others suggested you need a Medical Oncologist--who preferentially, treats just Prostate Cancer.

Nalakrats

Bradblue profile image
Bradblue in reply to Nalakrats

Thank you! With University now but I think you are right...Cleveland Clinic is where I will be looking. Will keep you posted.

I think you need a new urologist. As others have suggested, find an oncologist that specializes in prostate cancer. Many others have received a worse diagnosis but were given better predictions. I was diagnosed almost 2 years ago at age 56 with G9, all but one core (of 14) had cancer. Decided on surgery which revealed EPE and lymph node involvement so I completed radiation 8 months after surgery. I'm now 1 year after radiation and the start of a 24 mth ADT plan. My PSA remains undetectable.

Sloan Kettering has a nomogram online where you can enter your information and receive a cancer specific mortality likelihood after 5 and 10 years. The results are statistics-based and not necessarily how your situation will progress, but I bet will be more reliable, and based on actual data, than the timeline given by your urologist.

mskcc.org/nomograms/prostate

I'm no doctor, but based in what you posted, it sounds like you have a longer life than you were told. You need a positive attitude to bolster your physical health. Thinking you only have 1-2 years of life left is the wrong message for a doctor to send unless there is very good rationale for it.

Just my 2 cents. Best wishes to you

Fire him! Prayers.

No chemicals...all organic... always have been really careful about chemical exposure but who knows. Swimming in Lake Erie when I was a kid in the 60's was probably not good either.

Your urologist obviously knows nothing about the success of brachy boost therapy. 80% cure rates is correct.

Where do you get the 80% cure rate from? I had the boost and was shown the stats for my G9 pca as 93% chance of re-occurrence within 5 years. Bu was told emphatically that I would die with pca not of pca. Now 6yrs out and on palliative treatments and feel great!

In the ASCENDE-RT RCT (discussed in the article below, among those with high-risk (i.e., non-metastatic) prostate cancer, 9-year biochemical progression-free survival was 83% for the brachy boost cohort.

prostatecancer.news/2017/03...

The stats you heard were probably for surgery.

Nope, the stats covered both surgery and radiation. I had hdr boost after 25 sessions of IGRT and was told 93% chance would return within 5 yrs. It did in 18 months and has just recently become castrate resistant with Lupron monthly.Now on to Nubequa.

No mets as of this point but started with G9, 5+4, psa 20.61 in Dec 2015.

In this study of brachy boost therapy across top institutions, 10-yr metastasis-free survival was 87%

prostatecancer.news/2018/03...

Now, with PSMA PET scans, the results will be much better.

Do you have a link for the stats you saw?

Adding in the mets free I am im my 6th year and expect, with Nubequa should reach the 10th yr. My rad onco is very, very confident pca will not take me out.Thanks for the details. Mets free is not cure but darn close. I made it 40 yrsfor my first Cancer and plan on the same for this one.

My first surgeon told I had 5 to 10 years, that was 29 years ago. I think you should fire that urologist. Any doctor who thinks he/she can give a prognosis like that is an ego too big for credentials.

noirhole profile image
noirhole in reply to Magnus1964

Agreed. Or the Urologist knows that if you stay under HIS care you will be dead in 2 years. 🤣🤣

maley2711 profile image
maley2711 in reply to noirhole

bingo!!

Welcome to the group no one wants to be part of. Remember, you are NOT a statistic. I strongly believe your urologist needs to be replaced. If you keep him, let your Oncology doctors help you make decisions about care. For what it's worth, I was given 4-5 years by my Urologist 11 years ago. I'm glad I didn't listen to him. Find yourself a good Oncology professional and map out a plan.

Your urologist is an idiot. Get to Cleveland Clinic and see Dr. Eric Klein. He's a superb urologist, and will not BS you. Good luck!

Lulu700 profile image
Lulu700 in reply to garyi

👏🏼👏🏼👏🏼

Wife32 profile image
Wife32 in reply to garyi

Dr Klein is an excellent urologist! However, he refers to medical oncologist for metastatic men, although he consults on structural issues. He usually referred everyone to Dr Jorge Garcia, who has just moved his office from Cleveland Clinic to University Hospitals of Cleveland. They together form the Case Comprehensive Cancer Center in Cleveland and the docs all work together.

You already know your Doc is wrong. You can have your shots at an oncologist's office. Yes, go to Cleveland Clinic and see Dr Ornstein. He's an oncologist. Dr Klein is great too. Good luck. You'll probably live to see the Browns win 2 Super Bowls. 🤪

leach234 profile image
leach234 in reply to GoBucks

Nobody here will be alive long enough for that to happen! LOL!

Yes, I can remember walking into the oncologists room for my very first interview & he drew a line with a curve & the letter D at the end & I was over half way there. I was shocked. mortified! There it was, MY Death!Soo, He had to go & my psa is probably 20 by now & having yet another psma Galium scan next week but I have outlived that big D on the end of that line.

The moral of the story is- If you do not like your ONC, Find another one.

Sometimes i wonder if these doctors are just trying to get your attention to get serious

Hello Bradblue. F that urologist! Anyone telling you that is wrong for doing so. You don’t have an expiration date stamped on your ass. My uro told me I’d be done in 36 months at the best . I’m on working on 5 1/2 years clear of pc . Still on adt however . My uro waspissed that I wasn’t a candidate for surgery and he told us so. We were horrified. That guy let me go into kidney failure resulting in bi lateral neuphrostimy tubes and a foley for over a year and a half . I let that same uro chop my balls off 18 months later. Threw him bone. He was so happy . Last time I saw that dude. I got a pc specialist that changed my trajectory from chemo to 8 weeks imrt and double adt . Put this pc down . Ditch that uro my friend.

My father was given 3 months to 3 years at age 67 and did not succumb to his stage 4 PC. He passed at age 90 & not from the PC.

j-o-h-n profile image
j-o-h-n in reply to ann1919

ann1919,,,,,,,,,, if you're a Christian (and Catholic or Orthodox) light a candle for your Dad from me. If you're not, eat some Chocolate chip ice cream (two scoops) in honor of you dear Father. 90 God's buddy.....

j-o-h-n Saturday 05/22/2021 7:29 PM DST

ann1919 profile image
ann1919 in reply to j-o-h-n

Thanks & I will light a candle and eat some ice cream😊

I think the message is clear here. Get a second and third opinion with the best uro you can find. I think you're in for some good news. Then go with the new uro.

If I stuck with my first (or second) urologist I’d probably be dead. I dropped by once and he was surprised to ‘see’ me. Get another opinion and also a consult from a medical oncologist, if you have not done that. From what I read in your post - it sounds like everything was contained and not metastatic? Did you have a CT to look for any soft tissue involvement (lymph nodes, ..)? I don’t think your missing anything other than a need for a new doctor. Stay Strong and don’t worry so much- it does no good.

Tell your urologist to Sod Off !

But before you do find another, do you have something like the " league of cancer " in the states, if so ask them if they could recommend a better urologist.

I had a similar experience to you, 7 years ago, to make matters worse I saw a doctor in 2012, I had PSA of 103 and he said there was nothing wrong !

He, your current urologist has absolutely no right to suggest such a thing to you, it's a pity that you can't sue him for the mental trauma he's giving you, which isn't going to help in the long run either.

You are going to do well, you mind set is good, keep us all informed of your PSA and testosterone results, we wish you a long and happy life with your family.

Phil

I'm a lucky one. I wanted my uro to tell me how long I had to live. He wouldn't tell me anything except it could be a long time. He had me on eligard for 3 years but did agree to a vacation to see where I stood re pca.

Bradblue,

The brothers and care givers have spoken.

I am just going to share that no one knows when our time will be up, so fret not.

Your Drs’ look only at numbers and stats, every man is different. Stay in the present and do your utmost to get yourself in a good shape and always think clearly, and seek good opinions.

You have got this, we are all here to support.

My very best to you and loved ones

Stay safe 😷

Haniff

Lettuce231 profile image
Lettuce231 in reply to Haniff

Hi Haniff,

You are so right, if we were all governed by the numbers and stats in theory we would be dead.

I hope that cheers everyone up 😉

Phil

where the H ... did he get the 2 year number? ask him directly......a reliable nomogram? Check out the Memorial Sloan Kettering nomogram.........based on 10,000 of their surgery patients!!

healthunlocked.com/api/redi...

Input your biopsy info and let us know the result? Is there anything important to an evalutaion that is not incorporated into their nomogram? I suspect you will find at least 90% for 10 year cancer specific survival..ie CSS. None of these things are predictions...just probabilities...your Doc is an idiot and I'd run, not walk, to find someone competent. He shoud find another field...one where interpersonal skills are not needed...he has none apparently!!

Is there anything at all that necessitates your sticking with him???

Our Oncologist/ Radiologist said “you could have an accident and die so don’t worry!” 4 years after G8/G9 and EBRT and Zoladex we are having fun, eating clean and travelling in Oz ( bugger the expense! )😜

Chulagirl profile image
Chulagirl in reply to babychi

My husband has a Gleason score of 9 and metastasis in his spine. We have an appt with oncologist/radiologist next week. What questions do we ask??

babychi profile image
babychi in reply to Chulagirl

We asked what our treatment options were. When we were given options we asked what outcomes we could expect. Then we researched everything we could. Then we got a second opinion. Took a lot of time but was an investment in his future. We chose EBRT and Zoladex 3-4 years ago and so far no evidence of disease. Great outcomes to you both🌺

I was in a similar position as you with high Gleason score and like you sacked my then urologist. I had radiation and hormone therapy. I also have started with a personal trainer. I get hot flashes but feel otherwise OK. I try to keep a positive attitude. I hope all goes well for both of us.

There is a lot of good advice already from experienced members.

I can briefly relate my experience to show you that only a foolish doctor would predict 2 years in your case. I was diagnosed around 2.5 years ago with PCa. My PSA was 250 and Gleason 9-10. I have been on ADT for 23 months and had RT 19 months ago. I had no visible nodes in PSMA Pet Scan or anywhere else. There was one extra capsular extension and seminal vesicles were involved.

For the last 6 months my PSA is< .04. So two years was almost a walk in the park. In your case you have a great chance of a long remission based on RT and Brachy. Aim for minimum 10+ years. Who knows there might be some good developments during that time that will improve life expectancy!

Best of luck.

so, with the MSK nomogram, the worst result I find is......93% cancer specific survival, and that is assuming you have already been diagnosed with invasion of the capsule or seminal vesicle. If those are not present, then higher nmbers for cancer specific survival.ask Doc why that nomogram doesn't apply to you?? and please let us know what he says...orwhat any new provider says re applicabiity of MSK's nomogram. You probably have much more than 2 years if you do nothing.....MSK has a nomogram for "do nothing" also. It is quite likely that sometime in next 10 years you will need additional treatments after recurrence.

When I was diagnosed, the doctor gave me the same brutal message - 1-2 years survival.But that is now exactly 14 years ago when I was 51 years old - and I am still going strong.

So they don’t have a clue and should not give that kind of estimate!

What they SHOULD do is to start very aggressive treatment (as they have done in your case) and maintain that while closely monitoring the disease. You cannot be cured, but the disease should be seen as a chronic condition and treated as such.

Get a new urologist. It's like he's trying to put a voodoo curse on you.

All the above are right!!!Each of us follow a different path.

I suggest that you meet one more time with him and point out that if his track record with Prostate Canceris a 2 year survival that he is doing it all wrong.

Then go to the Cleveland Clinic and see an Oncologist. That onco doc will not give you an end date.

You have to be Comfortable with your doctor is a blog post I just read. And if not then change docs. They need to root for you not give up on you.

Me, started in 2015, G9, radation 25 sessions, 2 Brachy boost, 24 month Lupron. 18 months ok then back on the ADT. PSA on the rise again just now but lots of new meds/treatment ahead.

Read the stats for you at the locations others have posted but remember they are stats only.

Be Positive and enjoy living.

Hello BradblueI had a similar journey...never visited any doc ...healthy but by chance had PSA first in my life at 78. It was 30 no symptoms whatsoever...Went to see URO He took 2 min to do DRE and says with no hesitation happily that I have T3 stage cancer...still standing beside the table...

saying may be 5 years...Told him I did not ask that ...Your job is to recommend treatment

But he said I will be your friend during. Left his office and got drunk.

PC is so very heterogeneous and same initial symptoms but then different journeys.

Every member of this APC tribe has his own unique journey, and we share it together.

A fantastic lovable tribe......

No body knows the path my PC will take...there are statistics if one fits in them

There are scorched earth protocols as all chemical medicine is...a screwed treatment path based on Toxity...Disease may be cured but one dies of Toxity.

But still we have to follow protocols, no choice right now, and use our mind body to take care of ourselves thru diet, exercise and supplements even if one may call it snake oil....This forum is blessed with this information where each person shares his own clinical trial.....

Change URO , find some good prostate Onco....there are not many....

It is wild west... all the scans and reading them , body lighted up in PSMA, ADT how long,

then one takes his journey of treatment, second reactions but life is there as ever....

Welcome to this tribe and you will live long enough to see your URO shedding his robe .....

Enjoy farming where one knows the art of cultivating life....

I am a retired MD in Radiology (I read CT's, MRI's, Ultrasound, Plain film's, Mammogram's, etc. .... I have no expertise in Oncology but know how Medical Specialties' work) & I believe I would take the word of an Oncologist over the word of a Urologist concerning how long you MIGHT have (remember this is only a GUESS based on PAST observations which are by definition are OLD findings and do not reflect the survival of patients who are receiving todays more advanced treatments).

Urologists are surgical specialists.

Oncologists are cancer treatment specialists & deal with people coming to the end of life WAY more often than Urologists. Consequently, Oncologists are more up-to-date on all the new treatments and their effectiveness.

Just some thoughts.

DenDoc profile image
DenDoc in reply to rscic

rsic has hit the central point. Urologists are trained as surgeons, oncologists are trained to treat all cancers. I am also a physician with a 25 year history of prostate cancer. I have not seen a urologist in 12 years and that was for a repeat biopsy.

Getting to the right source of care will ease your mind, not cure your disease but they should be steering the ship. A urologic oncologist is a bonus but a well trained medical oncologist will be capable of managing your care.

No doctor in Ohio will be able to give you your needed treatment . That is what I was told in 2007 after my urologist said I had to have surgery right away because of my Gleason 4 + 4 . Not knowing anything about prostate cancer and no family history he scared me into having surgery . Then afterwards he gave me the 5 year death sentence and said nothing I would do would help with my survival . So do no more treatment because of the quality of life issues with further treatment . If I was you right now I would contact the Dattoli Cancer Center in Sarasota Florida. Or Doctors Sholtz and Lam in Marina Del Rey California . Send your medical records to either one and you can do a phone consult with either one to determine what they think is the best course of action . I myself went to Doctor Charles " snuffy " Myers junior in 2008 and he treated my cancer as a chronic disease until he retired in 2017 . Since then I just went to the VA since my cancer is from exposure to Agent Orange from serving in Vietnam 69/70 . But the VA in Ohio is just as bad . I've been on continuous ADT since then on second line treatment as each failed . MY mind and body has aged 15 years in 3 years due to testosterone <7 ! I got complacent and depressed and just did what the VA doctors told me . Anyway I am now on Lynparsa because I have a brcc gene that allows me to be treated with immunotherapy . Dr. Dattoli put in a order for a PSMA scan that I just completed at the University of Michigan Ann Arbor hospital last Tuesday . Just waiting for someone to explain the results to me because I never seen words describing my cancer like this before . So good luck and hope the best for you !

That’s why once you’re diagnosed unless you’re going to have surgery you no longer need a urologist and should opt for a skilled medical oncologist, preferably one who is experienced in treating prostate cancer.

Ed

HelloKeep searching for second opinion to save your life or at least to live longer, when i did a biopsy of my prostate i had 9 cancer cells of 12.The urology and the oncology in sweden said you have to remove your prostate gland even i had a little prostate gland.

I went to special clinic in Cologne in Germany. They made a HDR and external irridiation but unfortunately the cancer moving from that part to another part.

On 27/05/2021 i will do my Pet to see if there are some enemies in my body.

I'm struggling to defeat my internal enemy ,you have to do the same until the last opprtunity you get. There are here a good people who have knowledge to inform you and me , DO NOT GIVE UP.

George

You are clearly dealing with an incompetent IDIOT.

My case was MUCH worse than yours !!!

That was 4 years ago - I also opted for radiation and ADT.

You have a lot of runway ahead of you - relax and start living again .....

Hello Bradblue. I was given 2 years, 3 years ago. I'm still playing golf 4 days per week - even with fractured spine (radio) and fried gut (radio). Look to Tall Allen's advice. Noirhole is right. We all have different disease and the outcomes are dependent on many things - disease aggressiveness is but one. Don't get angry and don't give up. There are plenty of options for treatment and my last comment is to ditch your urologist and find one (or more likely an oncologist) who will join your team and fight for your life. All the best. Harry

Wow, dump the urologist and find a good oncologist, there has to be more to the story than the urologist is telling you. 55 months at stage 4 here. No expiration date 😖😖😖

Some doctors are trained years ago and read statistics based on older medicines and treatments and also from a time when diagnosis was usually later than at present times. In any case, as the many replies here tell you, doctors should not predict death. Keep being positive and have faith that you are getting better and will live much much longer than predicted as you are getting good treatments upfront and there are no mets. My husband was diagnosed in mid 2020 Gl.8 and urologist did not say it but behaved as if there was no point in doing anything for him. If he had done his job properly when monitoring PSA for my husband in 2019, there might have been no mets. We do not see him any more and go to a medical oncologist and a radiation oncologist for our treatments and questions. The company selling ADT is happy to send a nurse home to give the injection. What matters is how you feel and it looks like you are doing well. Keep up the good work with good food, exercise and positive thoughts.

In 2004 my MO told me, as a Gleason 9 (5+4) that I had 2 to 3 years. I am still here after hormone treatment, 43 radiation sessions, etc. I also work out regularly....

Did you have any metastasis? My husband does in his spine and Gleason of 9

Yep,

Your urologist sounds upset you didn't get surgery and give him his way. Good for you! Like others have said, it's your life, not his. Get a MO...one with whom you can have real conversations about your health.

I'll say it again...treatment may be the doctor's income but it's your outcome that matters!

😂

Look i sm going to be simple cause i am on AS and alot more knowledgable people here

Though you have a serious situation no one can really predict survival until they see youre responde to treatment. Thats the reslity of the situation with this disease

Having ssid that i have read about men in a worst situation who have been around 10 years or more

Not sure if cure is likely but definitly can be treated as long term chronic disease

I would reconsider another urologist an/MO

Early on, I replaced my doctors more than once. We need positive energy and not "doom and gloom" from our doctor. Plus they need to competent and up to speed on the current treatments.

Agree with so many as above. You don’t need a urologist right now. You need an oncologist for monitoring while you are on the 18 to 24 months of ADT and after. You are more likely than not to never need another treatment for PC. Never go back to that ash hole. He is trying to poison your life mentally rather than helping you.

Ya five years ago my oncologist gave me two years. Went for second opinion at CTCA, and was told by the oncologist that being treated for cancer by a urologist is like having my car repaired by a dentist, they may be able to do it but it probably won't be right. The level of care by an oncologist and their care team is so much better, they changed my diet, got me working out and have improved the overall quality of life. As of 3 months ago my mets have shrunk and one has disappeared. Will I be cured? Not counting on it, but I have had five of the wildest, most productive and beautiful years of my life and am looking forward to many more.

At the two year point, invite the urologist to your funeral, play dead in a casket for awhile, then sit up and give him a raspberry!😀

I had same thing 5 years ago. My PSA is .07 as of 2 months ago. Exercise, supplements, plant based diet and minimal stress. Also been doing the COC protocol as well. My advice to you is 1. get a new oncologist and 2. GET A NEW ONCOLOGIST. Keep up the fight and get busy living.

hi Bradblue ... so sorry to hear what your urologist is adamant about ... your attitude is super super super important ... you must fight for yourself ... you must believe what you believe is true and you must fight to make that belief a reality ... you must be in control and not be controlled ... it is your life and you and God are the captain of your life ... if you feel that it's needed ... i suggest that you consider checking-out this resource ... envita.com ... best wishes ... Nous :)

You came to the right place. I had a different experience with Drs and glad of that. I had a PSA 156 clean bone scan, CT with LN involvement and will be 2 yrs from diagnosis in a month. Stayed physically active the whole time and like you no problematic side effects from ADT or radiation, no brachy for me. Keep doing what your doing and find a MO as mentioned above and stay on this forum.

My friend I was diagnosed originally with a gleason score 10 2 mets to my bones I've been on and off hormone therapy for the last 3 years ... Expect to live another 10 years

Chulagirl profile image
Chulagirl in reply to Startanew

My husband has 9 Gleason score and met to his spine. He was just diagnosed. How were you treated?

University Hospital, Cleveland (Case Western Reserve University), is a darn good hospital. However, I agree with those that suggest a second opinion, and that definitely would be Cleveland Clinic.

We too are in Cleveland. My husband was diagnosed 3.5 years ago at age 52 with no symptoms like you. But he was Gleason 9 and has had bone mets. He is doing great....working full time and enjoying life. Go see Dr. Jorge Garcia at UH Main campus in Cleveland. He was at Cleveland clinic and is a world renowned prostate cancer oncologist. He runs multiple trials and tells us that Chris has “many, many years” to come. We have been aggressive with treatment and keep up with new options. Looks like UH will also be adding LU-177 in the future as well to deal with mets.....so many options. Feel free to contact me for more info.

Bradblue profile image
Bradblue in reply to Wife32

Thank you. I will reach out and get more information about your doctor. Sounds like the doctor I need.

"It is difficult to make predictions--particularly about the future."

--attributed to Niels Bohr.

Do yourself a favor--don't take any stock tips from that guy.

His is an opinion, not a fact.

I have just turned 70 and I had a PSA test in May 2020 that revealed it had gone from 4.2 to 4.6. What they didn't check was whether I had a urinary tract infection, which would affect the result. I was sent for an MRI scan which showed an area of diffusion on the right side of my prostate. They told me that for my age, I had a small prostate - 26cc. I then had biopsies where just one core from 15 revealed PCa, Gleason 8. Sent for more biopsies where 8 from 13 cores revealed PCa Gleason 9. Prescribed hormone treatment, which had dreadful side effects so I stopped having that. I had a consultation with an oncologist over the 'phone, due to Covid-19 in which I asked for a prognosis. I was told I could live at least another 10 years without any treatment. I decided not to have any surgery or radiotherapy and my urologist 'phoned me out of the blue and said he thought the oncologist was wrong and that I should have radiotherapy. I had a second phone call from the oncologist in which she inferred no treatment was necessary. I am really concerned as to whether these people know what they're talking about. I have decided to change my diet and have become a lot more active - I am reading a book called The Rainbow Diet by Chris Woolams, a biochemist. He started researching cancer after his daughter was told she had the disease, which he was told was terminal, with just 2 years for her to live. He got her to change her diet, as a result of which she got rid of her tumour/s. I believe she is still alive today. He cites lots of evidence to show that changing your diet can slow down the growth of tumours and aid conventional treatment. I am keeping a positive attitude and will do all I can to ensure I can defeat this disease. I wish Bradblue all the very best with his battle.

Stanford gave me from 2-5 years to live, with it being closer to 2. I'm now at 2 1/2 years. My score was gleason 4x4 with a psa of 367. I've since become a Christian and I'm thoroughly prepared for my death. I'm currently stable and no longer go to Stanford.

Bradblue...call me if you want George 2013629062

My urologist gave me 2 years to live in 2000, 21 years ago. Way too many variables to predict. Ignore the predictions. But do not ignore treatments and keeping up with advancements in treatment.

Hey Brad don't be blue......Simply tell this doctor that you come from a long line of Quakers and you wish to tell him/her something in Quakerish....tell him/her "fuck thee" and FIRE HIM/HER,,, Get yourself a good M.O. by recommendation from friends or from someone here. Remember, you're the boss and your doctor is the horse...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/22/2021 7:54 PM DST

Your urologist is a fool. I suggest you forget about his foolish prognosis. Not a good idea to ask anyone how long is a piece of string. In any event, change your urologist.

j-o-h-n profile image
j-o-h-n in reply to Poowater

Answer to how long is a piece of string? "A piece of string is twice as long as from 1 end to the middle".... now, How far can a dog run into the woods?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/22/2021 11:21 PM DST

My husband's urologist at MD Anderson JAX just "removed" himself from case unless we need him--he said he really no longer has a role since the MO is directing ADT and any further chemical treatments, and the Proton Radiation Oncologist at another hospital is directing the proton treatments. He said this would be one less doc visit we have to schedule; really appreciated that because we were wondering why we were seeing him when he was just the leader who assembled the other docs in beginning and now they are driving the treatments. FIRE the urologist and tell him why! your other oncologists are the ones treating you and have the attitude you need. FIND a good MO to deliver whatever chemical treatments you need. Best of luck and keep your positive attitude

Dump your urlogist and get a reputable MO.

I was diagnosed with APC in Nov 2018, with mets in the spine, femur,etc...My initial PSA was like 162...and went thru ADT, chemo ( docetaxel), Zytiga...PSA dropped to 0.232 and recently PSA started to rise with a scan showing some good progress in some areas of the bones and lymph nodes...but some of the lesions are growing too. Going for LU177 treatment in June.

Do get yourself a good Medical Oncologist. BTW, when you are physically and mentally well, half the battle won....God bless

Hi Bradblue! Not sure why your urologist would say such a thing. Your hormonal treatment would last at least 2years and it is very rare to have progression during this time. If everything is ok by then, it is very probable that you would be without disease progression in 5 more years (like 85%) and around 60% in 10years. And remember: disease progression is not a death sentence! It only means you have to do another treatment!

Bradblue profile image
Bradblue in reply to BrazilianRO

Thank you! I agree. Appreciate your words.

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