Hello, I am here because my husband just got diagnosed with prostate cancer with metastasis to lymph nodes. Gleason 9, PSA 56, he is 54 years old. We are both in shock still and real scared. Did not expect to hear stage 4. Trying to get as much info as possible how to deal with this new reality. He was given bicalutamide for 30 days on June 20th and got his Lupron shot for 3 months. Just have been told he is probably gonna get RT soon. I appreciate any advice
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I know you put in most of the details in your post, but in order to get the best help from some of the fabulous people here, please post in your bio. After your first post disappears, most responders like to look at the bio to see if what they have to say is applicable.
Thanks, will do that
True, they are 'fabulous' lol. Be good stay on their grace side or else...you will be ignored.
I was diagnosed at 57 and we did not know mine had gotten out to pelvic lymph nodes. If I had a do-over, I would have extended pelvic lymph removal using the frozen section pathology method with my RP and not after my unsuccessful salvage RT.
If I was diagnosed 'today' with all I have learned, I would be certain to have multiparametric MRI, genomic testing of biopsy tissues, liquid blood biopsy, PSMA PET imaging, genetic testing and second pathology and imaging opinions before treatment discussions and decisions. My focus from diagnosis has been to delay ADT as long as possible. Hope this helps. All the best!
He is already on ADT. Surgical removal was not approved due to 2 lymph nodes are in a stomach area. He had 3 scans done. We are in Canada.Not sure if any of those are offered here.
I appreciate you are both in shock and scared. I shared because you asked for any thoughts (advice but I strive to not offer advice). My approach since my diagnosis nearly ten years ago falls into any/all ideas including I left the US for diagnostic and treatment method I could not get here in US.
Where did you get your treatments. I do like advice, just don’t know what is possible to do.
I have and still do face obstacles here in US to investigative methods and treatments I want because I am striving to defer ADT and thereby likely castration resistance, if my cancer comes to this, for as long as possible. My RP and salvage RT were in US. My genomic testing was in US but I did have to self-pay in 2015; today it is covered. My better mpMRI was in London, England, also 2015. My imaging after salvage RT was in Netherlands and my salvage lymph node surgey was in Belgium.
You do go extra mile. I would like to do that for my husband, but probably not possible with our finances.
Health care in Europe is stunningly less costly than US 'market pricing'. Considerably less expensive than many spend on fun luxury vehicles and luxury holidays.
Where are you in Canada . Toronto has some of the best cancer centeres of excellence in the world Princess Margaret , Sunnybroook , Toronto General and several others .
Did anyone suggest you buy Dr. Patrick Walsh's book : " Guide to Surviving Prostate Cancer " to educate your self . The gentleman who travelled to different countries and different doctors . How in hell could anyone realistically follow his medical progress in detail . Each doctor must have been rolling their eyes ?
Select a good team of experts -- And stick with them . Follow their team advice .
Calm down. We are high gleason and after 7 years post diagnosis still living large, travelling the planet and leading productive, happy lives. RT can deliver great outcomes. It has for us. We are what we eat, drink, consume. Be your own advocate and research like crazy.💜
sending you a hug. My husband was diagnosed in February of this year at 61 with Gleason 9, stage 4, Mets to bones and lymph. I remember how scared I was. Take a breath and don’t rush.
My first advice is get to a national cancer center and find a medical oncologist that specializes in prostate cancer. If you don’t gel with them move on to someone else. We fired our last oncologist. Make sure you find someone willing to answer questions and takes time to answer questions. Do not let a Urologist or Radiation Oncologist lead your husbands treatment. cancer.gov/research/infrast...
My second advice is to get genetic testing. Liquid/blood, germline ( spit) and somatic tissue tests of the prostate biopsy. These take weeks to months for results.
The liquid shows what is circulating. The germline shows if his DNA (family) carries a gene like BRCA that causes breast and prostate cancers. The somatic tests the tumors because believe it or not those little f’ers carry their own genes. There are some mutations that react well to certain treatments and some that are aggressive and it might open you up for a trials.
Third - read the posts on here. The good posts outweigh the bad. There are a lot of men here 5, 10, 15+ years out from diagnosis. There are discoveries being made daily. Many people here are on androgen inhibitors (Nubeqa and Xandi) that block the cancer from uptake of androgen. These drugs are recent additions to the war against PC that has advanced. This group has been great and very helpful. I’m wishing you and your husband all the best.
Thank you
Well said there Warrior. Well said
I was 53 when diagnosed. The shock will wear off...soon the retirement plans get moved forward and that's a good thing. I still work FT in IT which keeps the brain sharp....I would say I'm more on the hyper active side than most my age (58).Depending on how the husband responds to treatment, he could honestly be around for more than 20 years.
Thanks, I really hope so
It may be curable with whole-pelvic radiation, 3 years of Lupron and 2 years of abiraterone.
Surgical removal was not approved due to 2 lymph nodes are in a stomach area.
One of the OP responses seems to indicate the lymph nodes are in the stomach area.... wouldn't this be outside the area that is typically targeted with WPRT? I wonder if the RT is for debulking and not curative.
The OP didn't specify which lymph nodes. NRG Oncology allows radiation as high up as the para-aortic LNs.
T_A, does that mean up to the para-aortic LNs or including those LNs? When I was getting my RT, the RO said the para-aortic LNs were not included.
The 2021 revised NRG Oncology atlas includes the para-aortics as the upper limit. I think one would normally irradiate as high as the common iliac LNs, but sometimes treat the para-aortics if they show up on a PET/CT. If cancerous, they are considered stage M1a, not stage N1. I'm unsure why that is historically. At some point, it is no longer part of the prostate drainage area, so the cancer must be considered to be systemic.
redjournal.org/article/S036...
Thank you
Urologist said he will contact radiation department and see if it possible to radiate those 2 nodes separately and whole prostate area. Also he did say that it would be at list 2 years on Lupron . I guess we will know more in September. They want to see first how he reacts to hormonal therapy and his next PSA test in mid September.
You should not be talking to a urologist about this - they know nothing about radiation. You would not radiate just 2 nodes. You have to find a radiation oncologist.
Thank you
Since you are new to the forum I thought I would pass the following onto you.
When you read a post by Tall Allen you are truly getting expert advice and he has a site which should be required reading.
There is another guy Retired Doctor who frequents the site as is very helpful. If you read daily you will get to know and recognize the other guys and gals who have a huge amount of knowledge and expertise.
We also have a stand up comedian who can be very witty at times and actually does have his s**T together also.
Good luck and one last piece of advice. Have your husband start NOW with a resistance and aerobics training program if he does not already do those religious.
If you ask some of the guys are do various diets. This can be a touchy subject and some are really opinionated. You might want to start by searching this subject on the site.
I guess that is all for now and it is going to be a long ride so buckle up.
Tall_Allen ,
What are your thoughts on NanoKnife ? I know of people here in Canada who have gone to a clinic in Germany where they have performed thousands of surgeries . Also here in Toronto many clinics are performing the NanoKnife .
TO DATE PATIENTS ARE REPORTING LOTS OF SUCCESS WITH MINIMAL AFTER AFFECTS
In and out the same day , followed by the typical PSA monitoring .
It doesn't work.
"E. Irreversible Electroporation/NanoKnife (IRE):
In a study of focal IRE, which is largely a non-thermal form of ablation, 4/25 patients (16%) were found to have residual cancer in the ablation zone. In another study that used mpMRI to detect residual cancer up to one year after treatment, 9/30 patients (30%) were found to have residual cancer in the ablation zone. Colletini et al reported in-field treatment failures by 18% of low and intermediate-risk patients detected via mpMRI-targeted biopsy after 6 months. Valerio et al. reported that 6/34 patients (18%) had residual disease. Guenther et al. reported that the recurrence rate at 5 years was 5.6% for Gleason 6, 14.6% for Gleason 7, and 39.5% for Gleason 8–10. Gielchinsky and Lev-Cohain reported that 4/13 patients had biopsy-detected recurrence. Zhang et al. reported that 6-months after focal IRE, 46% of low- and intermediate-risk cancer still had biopsy-detected cancer outside of the ablation zone and 17% still had cancer inside the ablation zone."
prostatecancer.news/2016/12...
(links are in the article)
I hear you Tall_Allen however patients who have had the procedure swear by it .
The clinic in Germany "Vitus Privatklinik " is in high demand worldwide , as is University College London - King Edward V11 under Prof. Dr. Mark Emberton is in equally high demand . North Toronto Cancer Institute plus numerous other clinics and Hospitals are equally busy performing NanoKnife . It's telling , at this juncture that Dr. Walsh does not mention this emerging procedure in his book . This of course could be in light of the medical field still considering NanoKnife a research project ( No 15 to 20 year post surgery history ).
With regards to residual cancer . Many treatments have the same issue -- even a RP if not performed by an Expert Surgeon .
How many patients have you heard "swear by it" versus the number of patients in all those trials? There are lots of "used car salesman" that you have been listening to. ONLY the results matter and the results have been awful.
The amount of residual cancer in the treated area for IRE is much larger than for modern radiation techniques.
Tall_Allen,
Do not insult my intelligence by suggesting I listen to any Tom , Dick or Harry -- or Tall_Allen . I have researched my work in the USA , UK, EU and Australia through independent sources and the TOP Urologists worldwide - Not local small town smuck Urologists , frozen in decades old procedures , who would not know what a Da Vinci Machine or Real time In-Bore ( Gantry ) Biopsy was .
They can't all be wrong . Do I smell a bias here ?
Your responde reminds me of the old adage : Research report proves" Eggs are Good for you " -- Research study funded by " The Egg Marketing Board " .
Have all the studies you referenced been " Peer Reviewwed " ? I suspect not .
Yes, all studies I link certainly have been peer-reviewed. I would never mention a trial that hasn't been. In fact, they are all prospective trials.
If you have any trials that I have not listed, would you please show the links? I am not perfect and may have missed one.
Your sources seem to be of the used car salesman type, and yes, they certainly all can be wrong.
I guess if I consult with King Edward V11 in London , John Hopkins , Cleveland Clinic ,
UCLA , Sloan Kettering , Mayo Clinic plus the top hosppitalsin Sydney & Melbourne Australia etc . Accordingg to you they are ALL WRONG .
I will stick with the Professionally Trained "MEDICAL EXPERTS ".
Although I find this forum interesting : I take a lot of the Monday morning quarterbacking , by untraiined medical participants, seeking an unprofessional scenario which makes them feel good . Not necessarily the best medical solution for . " THEIR PERSONAL SITUATION " In fact we likely never know all of their medical history .
In a previous post, you wrote: "Have all the studies you referenced been " Peer Reviewwed " ? I suspect not ." While you were wrong in your suspicions, I at least respected that you knew that trials had to be peer-reviewed. I asked you to tell me which peer-reviewed trials I missed, and you weren't able to come up with anything.
This is a very heavily researched field and many equipment manufacturers have invested heavily in clinical trials. In the US, the FDA rejected HIFU as a treatment for prostate cancer based on similar poor results. They did subsequently approve it for removal of prostate tissue (not prostate cancer) as in a TURP. That loophole has become a gold mine for unscrupulous doctors who make a fortune duping patients like yourself. Insurance will not cover it and patients must pay cash, even though it's only a clinical trial.
Why then is it a growing treatment " WORLDWIDE AT THE MAJOR TREATMENT & RESEARCH HOSPITALS " . ?
Do you feel you know more than these "Centers of Excellence for Prostate Cancer " ?
Someone wrote " You have scarring with NanoKnife " -- Utter BS
You should interface with patients who have had this procedure .
I've personally talked to several patients who now resent being hoodwinked, as you are. None of the major physician guidelines - NCCN, AUA, ASCO, etc. - advocate its use - why do you, who haven't even found a single peer-reviewed trial favoring its use, believe you know better?
I know how to evaluate research, and to separate fake claims from actual information that patients should use.
You obviously suffer from confirmation bias, which leaves you prone to being duped.
I repeat " Leading Prostate Center of Excellence Hospitals " are performing the NanoKnife procedure WORLDWIDE .
Have all our eminent prostate surgeon's been hoodwinked per your analysis ?
Lets float the question to our forum members :
Do we have any stories from our forum members with personal experience from the NanoKnife procedure ?
Anecdotes prove nothing either way. That's why God invented clinical trials and why they are published in peer-reviewed journals. I guess your failure to show such evidence makes it obvious to patients that you don't have a leg to stand on. If you want to be duped into buying a used Corvair, that's your business. Protecting patients is mine.
Wow! Quite a claim you "protect patients'. And you insult members well outside of the guidelines for the rest of us. I do consider many sources for information, this is the last time I shall read you.
I agree with NanoMRI . -- You appear to be the con artist on this forum by setting yourself up as "The Oracle on Prostatte Cancer " and if someone disagrees with you you get down in the gutter , and insult them . The lowest form of sarcasm .
I speak to real NanoKnife patients , long after these: " Protect your ass " Trial Results are published . "
You never answered why the top Urologists are increasingly moving to this Focal Therapy over other treatments such as HIFU , Brachytherapy etc .
Finally : " What professional MEDICAL TRAINING do you have other than surfing the internet ? Are you an MD ?
I was neither sarcastic nor insulting. If you have a problem, take it up with the moderator. The only solution to the internet garbage you are spreading is peer-reviewed trials - which you cannot produce.
You did not answer the question " WHAT ARE YOUR MEDICAL QUALIFICATIONS " ?
There is nothing more dangerous than Monday morning quarterbacks , who have a little knowledge to be dangerous - GIVING MEDICAL ADVICE . Directing them to medical experts is fine -- Suggesting specific treatments or drugs - A NO NO .
I notice you provide medical advice . As a professional Engineer and Lawyer . I would suggest you may open yourself up to legal action from one of this forums members .
Especially in the USA .
Give it a rest, will you? We SO appreciate Tall Allen for 1) keeping up with clinical studies and clinical trials spanning the whole gamut of PCa issues, and 2) his conservative approach in responding to anecdotal evidence. We are able to know when his is erring on the side of sticking with the best known clinical approaches, and we don't look to him as a doctor but as a highly informed and very well read communicator of what's out there and what's coming. Don't mess with him!
Can Tall_ Allen not speak for himself . WHAT ARE HIS MEDICAL QUALIFICATIONS ?
If you prefer to take the advice of a Non Medically Trained Professional -- I have a ranch to sell you in Manhatten .
As they say " A little piece of knowledge can be dangerous " -- Moreso in health related matters . I'm sure this forum was never intended for members to be prescribing Medical Advice / Treatments recommendations . Rather a vehicle to lower the stress level of participants and sympathise with their condition which MAY be similar -- but never the same and direct them to the attendant sources of :" Medical Excellence " -- The operative words Medical Expertise for their next steps .
Rule # 1 . You can never diagonose a patient whom you have never met . Fools try to.
Haha! Of course TA can speak for himself but I think the point is that others can speak for him also. He has gained our trust by his dependable and informed advice. My MO even has trouble keeping up with all the trials going on. You, on the other hand, could never sell me a bridge or a remedy for anything.
You both avoid the question " What is his professional training to give medical advice ?
Until recently there was a guideline to speak from one's own experience. That guideline has been dropped. Very interesting!
Your "don't mess" comes across as a threat.
As for "best known clinical approaches", this is a misconception as there is no singular best know approach.
No threat intended… like “Don’t mess with Bill, leave my Billy alone…” I’ll respond without passion in the future!
no no no passion is why we live 
Just know not all of us share your 'trust' and we should be allowed to passionately share our views.
Heck, so many of us question our docs, we should be able to question each other. Is this not "unlocked"? If I trusted TA as you do, I would not be regularly having ultrasensitive PSA testing, imaging and liquid blood biopsy testing as I do, nor would I have had the Ferrotran nanoparticle MRI when I did, at 0.11, nor my IMO successful salvage ePLND with frozen section pathology method.
I think you missed the entire significance of what TA showed you - for low Gleason, it was pretty good. Not good for higher Gleason score patients whatsoever. I was scheduled for a biopsy and Ablation by a very well regarded prostate center and doc. When he found out I was 9.5, he told me he couldn’t help me. VERY different treatments for differing circumstances…
I’m thinking many of these low Gleason people could likely not do anything for years except active surveillance (albeit I’d likely have done the ablation, but not sure now).
Hi, my dad is doing it on Tuesday - travelling there tomorrow - this will be our 2nd visit, as on the first one they've done only ECT a few weeks back... he will also get an infusion of keytruda 1/2 (a new approach they are doing of only giving 2 doses 3-4 weeks apart, first one at IRE procedure), as the blood tests they've done in another clinic in Cologne showed it would be beneficial. Glesaon 7 & 9 ... despite negative comments we've decided this is best route for his specific case. I agree that also statstics of traditional treatments are variable and by so risky, so hope for the best ... will be back with results.
If your dad is willing to risk his health on an experimental procedure that has already been proven to be ineffective, it is his body.
that's what i'm doing now. any chance to get off one or the other prior to the 2year mark? my sleep deprivation is pretty bad on this stuff.
There is a major ongoing clinical trial of 2 years of ADT and apalutamide.
You raise a valid question about location but do listen to what Tall Allen says; he has a lot of knowledge and research. I remember when I was considering a treatment I opted for a new procedure called Tulsa Pro that he discouraged very vociferously. I didn't listen to a thing and wasted $30,000 on it and risked spread to the pelvic area by the length of time fooling with it and others did too. It didn't work for any of us with the 7(4+3). So I wish I had followed his advice at the time.
We have been into unreal emotional ride with this diagnosis. My husband went for regular yearly check up. Tell family dr that he urinates more often, that was November 2nd,2023. So dr treated that as UTI and gave him antibiotics. So middle of December second doze of antibiotics. Then my husband went to see him again in February and ask to send him to urologist, family dr said it will take close to 2 year, huge waiting list. He also did PSA test(not done here till 55 years of age). Test came at 56,9. So my husband got to urologist a week later. Urologist did finger test and said it is inflammation and 100% not cancer. Gave very strong antibiotics for 1 month. Then end of April PSA test came at 52,0. So just to rule out cancer biopsy was done on May 30th. Results were terrible all 16 positive, Gleason 5+4. So on June 20 hormone therapy was started. First scan was on June 17, second June 23 and last one on July 5th. We got phone call on July 15 telling us great news, no spread, only prostate is cancerous. Then urologist calls us and says they reviewed it again and now see spread to lymph nodes around prostate and 2 in a stomach area. So the hell of a ride from happy to bad.
Where do you live in Canada . Re : Your PSA I insisted with my GP to have a PSA and pay for it - the 1st time it cost under $30.00 , if you pay today it is around $80.00 although I'm not sure - I have been getting it free in Ontario under OHIP for years .
I currently see 3 Urologists - Zero problem making appointments . One is the head of Urology at a Major Toronto Hospital . A wait time of 2 years is BS - Change your Dr.
Rural Manitoba
If you’d like to know what radiation is like, I wrote a comic about my diagnosis and treatment. It’s available here on this site.
malecare.org/prostate-cance...
Gleason 9, stage IV with spread to my pelvic lymph nodes. I had 28 sessions of EBRT, have been on ADT (Orgovyx) since December. Added Abiraterone (Zytiga) and prednisone starting in May. This is sometimes referred to as “Doublet Therapy.”
I recently had a PSMA/PET scan that showed good results from the RT.
Ask me anything.
im in that boat exactly. gleason 9 stage 4 pelvic.lympnodes (low Volume) started Lupron in May, Abiraterone /prednisone in april. Hard time with sleep. legs gittery like restless leg syndrome. small belly pouch that i never had. other than that, on my way. next meeting Aug 6th for PSA test /Bone density scan.
Do your research on treatment options.
Get second opinions. Use PSMA Pet/CT imaging to determine where the cancer is.
Get a good team of specialists together, urologist, medical oncologist, radiation expert, etc.
Treat it with intent to crush it!
The shock will wear off. Many here have been living many years with stage 4 pc. Sorry for the sad news and keep positive at all times.
Stay 💪🏼 strong
I am researching it now. Thank you
Did you purchase Dr. Patrick Walsh's Edition 5 book : " Guide to Surviving Prostate Cancer " . The best money you will ever spend . It will educate you across the board on prostate cancer .
Not yet.
Orange 95 .
You will wish you read it front to back and back to front . This is really an amazing introduction and educational book for newly diagnosed prostate sufferers .
It will answer 99 % of the questions posed on this site .
I am going to
Good decision .
A Caution : Dr. Walsh is the world's foremost authority on prostate cancer , he is the Distinguished Professor of Urology Emeritus at the Brady Urological Institute of the John Hopkins Medical Institutions in Baltimore , Maryland .
Accordingly , while many of the responses from this site ( Healthunlocked ) will make you feel much better and are well intentioned : 99 % plus ARE NOT FROM THOSE TRAINED IN THE FIELD OF MEDICINE .
While you will see similarities between current sufferes and your husband .
EACH CASE IS DIFFERENT . Also do not put your blind faith in every Google search proporting to have the golden bullet answer to every question .
Best to temper these well intentioned suggestions for your husbands case .
Educate yourself via Dr. Welsh's book . Equip yourself to consult with the medically trained professionals in the treatment of prostate cancer . Urologists , Pathologists , Radiation Oncologists etc . -- Ask your doctors lots of queestions . Get 2nd opinions .
Good luck .
Thanks
Hmmm. Difficult predicament but not impossible. Disease is I. The prostate of course but also spread to limb nodes near the. Prostate (pelvic) plus two sites near the stomach. Presume this is on a PSMA scan. Difficult but not to impossible. Whole pelvic radiation should be deployed along with definitive treatment of the prostate, either by surgery or radiation. The stomach oligometastasis lesions can be targeted by SBRT RADIATION. Them select an adjunctive ADT regimen of six months to two years
That could be a pathway to a cure worth pursuing.
Sorry about my spelling tonight
Do not worry about spelling, English is not my first language. I make many mistakes too. Thank you
MateoBeach.
Please clarify the following .
I have been on Dutasteride for 4+ years for BPH to shrink my prostate . My PSA at the time of my recent prostate diagnosis was 8.2 . Knowing that you have to double or multiple by 2.5 times your PSA reading if you are on Dutasteride for years .
What is my "TRUE PSA NUMBER " ? Is it 4.1 or 16.4 ?
PSA is produced by the normal glandular prostate tissue as well as by most prostate cancers. Your PSA drops as the normal prostate shrinks from Dutasteride. PC Cancer cells may also reduce PSA production. It does not mater what the PSA is now. You have cancer in the prostate and need to have the prostate definitively treated by surgery or radiation and then followed by whole pelvic radiation therapy (in my opinion). The PSA level after treatment will be much lower and is the important benchmark for you to follow.
I understand however , Are you saying without the Dutasteride my PSA would have been 16.4 ?
Also . Has anyone on this forum commented on or have had the NanoKnife procedure
Thanks foor your timely reply .
Hello, I too had a similar diagnosis to your husband, PSA 150, cancer spread to lymph nodes, age 56 years, no operation viable due to possibility of the cancer spreading further. Now here's the bit to cheer you up, that was over 11 years ago.
I have been on Lupron from day 1, Zytiga and prednisone for more than 6 years, my wife and I can't remember exactly. With the correct treatment he will lead a fairly normal life and so will you, the shock at first is awful, but it will wear off over time.
He will feel pretty sick for a while as the medication kicks in and begins to work, but that too will pass, hold on to each other, seize every day, the day's become weeks, then months and then years. Above all stay positive and look this beast straight in the eye and tell it where to go.
My wife and I send our love to you.
That is great. Gives me hope. Thank you
I wrote a post in October of last year, the responses were amazing. It may help you and your husband to take a look. The strength of our brothers and sisters is incredible. The future looks brighter with our shared experiences. Someone once said to me " Hope makes a good breakfast, but a poor supper " I'm still eating breakfast and I didn't like the guy much anyway.........But I love breakfast 😋
Thanks. How do I find your post from October?
I think you tap on my profile and you should see posts. I hope 🙏
I've just done it, it works, looks like I got some dates wrong though 🙃
Okay, will do.
Imao sam 53 godine kada mi je dijagnosticiran rak prostate. Gleason 7. Proširilo se na limfne čvorove zdjelice. S PC-om se mučim već četvrtu godinu. Imao sam RP, zračenje i prije 6 mjeseci sam završio 3 godine ADT. Sada je PSA 0,00. Testosteron mi se još nije vratio. Želim vam dobro zdravlje i vjeru u ozdravljenje. Pozdrav Adame.
Is that Croatian? Polish? I can’t easily translate it.
Da Hrvatski.
I can understand few words in your message, because it is Slavic language not the whole thing. Thank you.
English Translation from Croatian in Google:
I was 53 when I was diagnosed with prostate cancer. Gleason 7. It has spread to the pelvic lymph nodes. I've been struggling with the PC for four years now. I had RP, radiation and 6 months ago I finished 3 years of ADT. Now the PSA is 0.00. My testosterone is still not back. I wish you good health and faith in healing. Hello Adam.
sorry to hear your news, such a shock I’m sure. Hope things go okay.
Thank you
Firstly, I am sorry to hear about your situation. We’ve all been there.
Second, take a deep, deep breath. He is more likely to die in his old age from heart failure or something else than from prostate cancer (PCa). That is true because you are getting it treated now, and we live during a time when there are MANY treatment options, and even more coming soon. In fact, there is more research and more treatments “in the pipeline “ for PCa than all other cancers, combined.
So in that regard, there has never been a better time to deal with this disease.
Thirdly, recognize that you’ve started on a journey. It’s a journey of learning and waiting and being your own best advocate. This forum( Malecare malecare.org ) and organizations like PCRI.org, the Prostate Cancer Foundation, and Zero Cancer all provide excellent info and guidance.
Finally, realize you are not alone. You have a new family of supporters here, and I encourage you to be involved in your choice of a faith community too. Support and prayers are critical to those times of “you’ll get through this”.
One more thing… 1 in 2 men, and 1 in 3 women, get cancer during their lifetime. Of that, about 1 in 7 men get PCa. You are fortunate because you know what yours is, and you will be helpful to others on the same journey.
May God bless you on the journey.
Cousin Grandpa
This is an amazing group of people here. Thank you for your support
Well spoken.
number 1. Don’t panic and give up , I was diagnosed withe almost the same issues as of Aug 2016. I have a real good doctor. He changed up the normal treatment for me. I do the bone shot and anti hormone every 28 days. But we started with 6 rounds of Taxotere chemo first to slow down the Mets , then he put me on Xtandi every day since then. He did not remove the prostate as he said that once the cancer has left the host there was no benefit in removing it. . My urologist just blew the cancer as he had me on drug to lower the PSA. I love my oncologist he has saved my life 8 years as of August 6 th. Keep up the fight Warrior. It’s a long battle if we’re lucky. 🙏🙏🙏
Thank you
Larry...I'm also on Xtandi (just started) and Firmagon every 28 days. I have some bone pain in my pelvic area....never had any chemo or radiation, although I will be talking to a Radiation Oncologist this week. What are the 'bone shots' you mentioned?
While I was going thru chemo they gave me a shot Neupogen the day after the chemo for the blood. Now I’m taking Elagard and Xgeva shots every 28 days Hope this answers your question. Good luck Warrior
Hi
I did a radiation to my Lymph Nodes by a special Oncologist in Germany he radiated not only
the Lymph Nodes he took an area surrounded by the Lymph nodes like a rectangular and then
i started Bicalutamide 150mg ( intermittent ) yes Mr. Tall Allen he recommended an Oncologist.
We will contact an oncologist and have a discussion about this. Thank you
"... metastasis to lymph nodes. Gleason 9, PSA 56, he is 54 years old... was given bicalutamide for 30 days... got his Lupron shot for 3 months... get RT soon."
You are doing it all correctly, and have a chance for a cure since you doing it at the beginning. ADT to shrink the tumors, in preparation for radiation. Then doublet or triplet systemic therapy (he is young enough for triplet).
I was diagnosed almost 4 years ago at 78, PSA 7, Gleason 3+4 with perineural invasion. My MO did not explain the importance of hormone therapy after prostate radiation, and said it was reasonable to avoid the ADT due to age. I blame that for my being Stage IV 3 years later, with mets to nodes. So then I had pelvic radiation and chose doublet therapy with oral Orgovyx (relugolix) as ADT, and abiraterone (generic Zytiga) with prednisone as ARPI. I did not choose to add the chemo Taxotere (docetaxel) for a triplet, because I did not know how I would tolerate it at 81.
I can say that neither the prostate nor the pelvic radiations caused me any discomfort, and nor has the doublet therapy. With hindsight, I should have started ADT immediately, and could have tolerated triplet therapy.
So I think your husband would have an excellent prognosis with radiation and triplet therapy.
Sorry to hear of your situation. You might benefit from reading my bio. Just click on my name.
Okay. Thank you
Similar Diagnosis read my profile for my path. Once you get over the shock there are a lot of good choices that can give one another 5-20 years of life. Love and resistance exercise are two of the most powerful drugs at your disposal. Pay close attention to Tall Alan and Mateo Beach, they are in my opinion 2 of the most knowledgeable posters.
Will do, he exercises every day. In perfect shape and health, only prostate cancer. No other medications or conditions. Thank you
I was the same when diagnosed
Scout offers some of the best advice also, acknowledging the experts.
So sorry to hear of your husband's diagnosis. Our journey started in February of 2024, so we're about 6 months in. 1000mg abiraterone and 5mg prednisone daily. Lupron every six month. PSA was 466 and doubling every month or so. Bone mets, pain. As someone said to me upon diagnosis amid all of our worry and confusion - no one tells you you're not going to die in 3 months. Well, he's not going to die in 3 months and hopefully not for a very long time. It's an adjustment and flurry of appointments and learning. 6 months in (including failed chemo as I could not tolerate docetaxel) I'm doing great. PSA went undetectable within 2 months and testosterone is well below castration level. Enjoying every day. Working out. Lost some weight. Cleaned up the diet.
You and your husband are now 'in the club' and it's a journey everyday for a long time. Learn, take action and own your care. If you don't like your Oncology team, find another one. We didn't like ours at first but we gave it time and have a better relationship with them now. I am under good care. There's a plan B, C and D as my disease changes. I felt better after I learned to literally tell Cancer to F** Off! Defy, fight and win!
I also got to a point after months of reading, researching, reading, researching - that I was tired of the subject owning my day. Yes, read, research and learn - but live. You'll know when you're there.
This HealthUnlocked team is a great resource for support and information. No dumb questions and lot's of opinions. You care team will say 'everyone is different' which can see uncommitted at first, but it's true.
Thank you. I do find myself reading about this a lot, maybe sometimes too much.
IMO, it's just part of the process. Initially, we were totally consumed with understanding this - talking to family in the health profession, friends of friends with this condition, the usual websites, clinical trial info, drug manufactuer websites...everything. It's necessary. My wife and I still consume some information pretty much every day. But, it's no longer the scared-as-hell pursuit it was a few months ago. You'll find your spot one day soon. By all means, do learn everything you can!
Based on your location prepare yourself for travel. If you run a farm or ranch think about management during absence. In MY case it was worth finding the best medical oncologist I could afford and regardless of location. I had no trouble transferring oncologist recommendations to a local doctor who carried out the plan. This is all U. S. based experience.
I had surgery for G9 18 years ago, lymph node spread, Rt six years later, several drugs over time at varying dosage, some off treatment time (not too much), and now cruising with a daily pill for the last 7 years. My experience is not normal.
Why would YOUR man be normal.
Thanks
Hi, unfortunate news. My father had pretty much same diagnosis at 63. He too had effected lymph nodes a little higher where they couldn’t radiate.
What they ended doing was radiation of prostate and whole pelvic region, and hormone therapy. He gets a shot of lupron every few months and takes daily pills of xtandi. Thankfully these treatments has put him in a full remission for the last couple years.
Rural Manitoba? You might as well be living on the moon..... Ask here where is the best and closest Pca treatment center and make arrangements to use that facility for your dear Husband. There are a lot of new meds and procedures to treat Pca.
Good Luck, Good Health and Good Humor.
j-o-h-n
Get your husband to Cancer Care Manitoba in Winnipeg for his doctors and treatments. Educate yourself. This forum is great for support. PRCI (Prostate Cancer Research Institute) has many video’s on YouTube. Watch them. They were a great educational source but also gave us a lot of hope. They also helped calm our anxieties. And if you haven’t already done it, purchase Dr Patrick Walsh’s, Guide to Surviving Prostate Cancer.
First of all - I know we ALL understand the fear part.
So, I'm wishing you strength, optimism, and to keep looking at your husband as "your husband" and a man. Not a patient.
My dad lived for 17 years after being diagnosed with advanced prostate cancer at 71. He lived a very full, adventurous, optimistic, life - while he took in and learned as much as he could about his disease. ( actually, that's where I came in.) the "Dr. Dawn" of the family.
Not a doctor. But very passionate about lifelong health, wellness, strength, mindset and how to take care of our bodies "when they don't work right."
I urge men, and families here to follow Dr. Geo > An all around amazing man, and medical specialist in men's urology. > drgeo.com/about-dr-geo/
Learn about conventional AND holistic and naturopathic treatments.
My dad did conventional treatments, had his prostatectomy early on as his first diagnosis was that it had already spread.
He was on Lupron, then 15 years later, radiation. And never did chemo.
He never took pain meds, but did find a LOT Of relief from nausea , fatigue and pain by small doses of THC/CBN gummies.
He was VERY open to things without side effects...and with small dosing at night, did REALLY well for 5 years.
My parents traveled to British Columbia, Italy, and then Ireland in the last two years.
He worked at 87 years old completing the renovations of an Epic mall in Troy Michigan, that he was the architect that designed 30 years prior.
He ALWAYS had something to look forward to and kept planning his LIFE.
Never did he talk about his illness, unless there was something new to learn, and even when the news was not good - he made a new plan to keep his sprits up and his mind busy.
My dad also did 2 X yearly, telemedical calls with Dr. Geo. Expensive, but a complete different angle on health and what the body is capable of.
Stay informed.
Stay active.
Stay optimistic and hopeful...it helps, and it works.
If you don't like your doctors or team, find a new one.
Look at conventional and other methods to stay well, fight the disease and LIVE.
thats all for now.
Sending you love and strength. Here for you!
Dawn
I do follow Dr. Geo channel. Thank you
+1 on Dr. Geo
Hello, I was a lot of similarities with the age at diagnosis, initial meds treatment and, radiation. I will share this just so that you get another point to consider. At about four years after I got 35 sessions of radiation, I just started to get horrendous side effects from it. Radiation pretty much burns you inside, the side effects can not be immediate but they can appear up to ten years after getting the treatment. I am not in a good place, I am almost 61 now and I do not see myself injuring my body with all the toxicity the current and more 'popular' medications do to your body. So, my comment is not really advise but sharing things you need to know. Good luck.
Thank you.
Hello, I am exactly the same age with your hubby when i got diagnosed PCa at 54 with PSA level 60 and GS 5 + 4 based on biopsy paper which is call very aggresive tumor. But i was a bit lucky that the tumor not yet metastasis anywhere. I got 39 round of radiation and ADT for 2 years. My prayer and my hearth for the recovery of your hubby. Keep the spirit on and less stress. Thank you
I was diagnosed with a Gleason score of 9 and stage 4 in 2014 and I was 52. All my lymph nodes were taken out in my pelvic area and I have bone Mets. It's been 10 years and I'm still here. Too many medicines and treatments to list. Keep a positive mind and go on with your life between treatments. You have to be strong and it's not easy. Don't accept that it's going to get you. Good luck! I'm 62 and going strong.
I have been reading Tall-Allen on this site for years. I find him to be incredibly well informed about the science and medicine involving PC. He can be a bit curt sometimes, but I wouldn’t throw the baby out with the bath water. I would give great consideration to any information or advice he provides.
I would be very cautious giving someone advice who is NOT Medically Qualified .
This forum is good as a motivational tool - as all cases of cancer are "Individual " best to stick with medical professionals who are familair with ones family medical history .
My advice is educate
That is all good, but nothing is worth following when he gets an it's my way or the highway approach. That has been my experience in most of my interactions with him. In real life I don't put up with that. I've had a lot of POC with whom I just have to fire on the spot for being obnoxious. I am convinced that we all put up too much at fighting PC, I refuse to add aggravating people to the mix.
First take a deep breath. There are a lot of treatments out there. The important thing is to educate yourself of what they are and most important what's best for his situation.
I had a Gleason 9 at 57 and was also stunned. I found "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer" the most comprehensive primer for understanding the disease and how to assess treatment options, as well as many statistics. Here is a link to the latest version on Amazon:
amazon.com/Patrick-Walshs-S...
Wait to decide on a treatment (regardless of what your RO or MO recommendations) until you read this and visit reputable websites, such as: May Clinic, UCSF, Prostate Cancer Foundation and NIH and others.
One size does not fit all. This disease is a very unique to each patient. Be informed, question your doctors and get second opinions when you feel unsure about a treatment plan being proposed.
There is also the Malecare Prostate Cancer News Letter but for now focus on your understanding the disease, its progression and stages and then appropriate treatment options for each.
It's not as bad as it first seems. I have had stage 4 PCa for 8 years, had a radical robotically assisted prostatectomy, chemotherapy, ADT, targeted SBRT and I am now on Zytiga (abiraterone). Take it a step as a time and enjoy life. Hit the disease hard but also value the quality of life over the long-term.
Keep us posted and goodluck!
I’m a Gleason 9.5. Pretty much same boat. Let’s update each other on this journey. After months of delays and tests, hopefully Friday I begin some form of actual treatment - too many visits, time with NOTHING done treatment wise so stay on these people (but they all bill right away - not being cynical- it’s simply the way it is)…
Worried about Mets because of the incessant delays. The MO tried to put me off until next Thursday after telling us this Friday - we politely insisted and she kept Friday.
My opinion is the vast majority of the “desk workers” are the issue- everyone treated the same. So far, love the nurses, techs and MOST docs (had one I’d not send an enemy to).
And I am one with great insurance and well off - I shudder thinking about others in less fortunate circumstances.
Good luck!
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