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Advanced Prostate Cancer

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Orange95 profile image
99 Replies

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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Orange95
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Researcher50 profile image
Researcher50

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.

Orange95 profile image
Orange95 in reply to Researcher50

Thanks, will do that

Blueribbon63 profile image
Blueribbon63 in reply to Researcher50

True, they are 'fabulous' lol. Be good stay on their grace side or else...you will be ignored.

NanoMRI profile image
NanoMRI

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!

Orange95 profile image
Orange95 in reply to NanoMRI

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.

NanoMRI profile image
NanoMRI in reply to Orange95

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.

Orange95 profile image
Orange95 in reply to NanoMRI

Where did you get your treatments. I do like advice, just don’t know what is possible to do.

NanoMRI profile image
NanoMRI in reply to Orange95

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.

Orange95 profile image
Orange95 in reply to NanoMRI

You do go extra mile. I would like to do that for my husband, but probably not possible with our finances.

NanoMRI profile image
NanoMRI in reply to Orange95

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.

babychi profile image
babychi in reply to Orange95

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.💜

Orange95 profile image
Orange95 in reply to babychi

Thank you for your comforting message.

babychi profile image
babychi in reply to Orange95

You are most welcome. It is very easy to panic and stress. You are amongst folks who understand.💜⭐️👍🏻

Sunnysailor profile image
Sunnysailor

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.

Orange95 profile image
Orange95 in reply to Sunnysailor

Thank you

larry_dammit profile image
larry_dammit in reply to Sunnysailor

Well said there Warrior. Well said

MoonRocket profile image
MoonRocket

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.

Orange95 profile image
Orange95 in reply to MoonRocket

Thanks, I really hope so

Tall_Allen profile image
Tall_Allen

It may be curable with whole-pelvic radiation, 3 years of Lupron and 2 years of abiraterone.

MoonRocket profile image
MoonRocket in reply to Tall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply to MoonRocket

The OP didn't specify which lymph nodes. NRG Oncology allows radiation as high up as the para-aortic LNs.

Orange95 profile image
Orange95 in reply to Tall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply to Orange95

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.

Orange95 profile image
Orange95 in reply to Tall_Allen

Thank you

Conlig1940 profile image
Conlig1940 in reply to Tall_Allen

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 .

Tall_Allen profile image
Tall_Allen in reply to Conlig1940

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)

Conlig1940 profile image
Conlig1940 in reply to Tall_Allen

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 .

Tall_Allen profile image
Tall_Allen in reply to Conlig1940

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.

Conlig1940 profile image
Conlig1940 in reply to Tall_Allen

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 .

Tall_Allen profile image
Tall_Allen in reply to Conlig1940

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.

Pford62 profile image
Pford62 in reply to Tall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply to Pford62

There is a major ongoing clinical trial of 2 years of ADT and apalutamide.

Xavier10 profile image
Xavier10

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.

Orange95 profile image
Orange95 in reply to Xavier10

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.

Conlig1940 profile image
Conlig1940 in reply to Orange95

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.

Orange95 profile image
Orange95 in reply to Conlig1940

Rural Manitoba

Jpburns profile image
Jpburns

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.

Orange95 profile image
Orange95 in reply to Jpburns

Thank you

Pford62 profile image
Pford62 in reply to Jpburns

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.

Orange95 profile image
Orange95 in reply to Pford62

I hope your next appointment goes well.

countrymusic101 profile image
countrymusic101

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

Orange95 profile image
Orange95 in reply to countrymusic101

I am researching it now. Thank you

Conlig1940 profile image
Conlig1940 in reply to Orange95

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 .

Orange95 profile image
Orange95 in reply to Conlig1940

Not yet.

Conlig1940 profile image
Conlig1940 in reply to Orange95

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 .

Orange95 profile image
Orange95 in reply to Conlig1940

I am going to

Conlig1940 profile image
Conlig1940 in reply to Orange95

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 .

Orange95 profile image
Orange95 in reply to Conlig1940

Thanks

MateoBeach profile image
MateoBeach

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.

MateoBeach profile image
MateoBeach in reply to MateoBeach

Sorry about my spelling tonight

Orange95 profile image
Orange95 in reply to MateoBeach

Do not worry about spelling, English is not my first language. I make many mistakes too. Thank you

Lettuce231 profile image
Lettuce231

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.

Orange95 profile image
Orange95 in reply to Lettuce231

That is great. Gives me hope. Thank you

Lettuce231 profile image
Lettuce231 in reply to Orange95

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 😋

Orange95 profile image
Orange95 in reply to Lettuce231

Thanks. How do I find your post from October?

Lettuce231 profile image
Lettuce231 in reply to Orange95

I think you tap on my profile and you should see posts. I hope 🙏

Lettuce231 profile image
Lettuce231 in reply to Orange95

I've just done it, it works, looks like I got some dates wrong though 🙃

Orange95 profile image
Orange95 in reply to Lettuce231

Okay, will do.

adam1967adam profile image
adam1967adam

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.

Jpburns profile image
Jpburns in reply to adam1967adam

Is that Croatian? Polish? I can’t easily translate it.

adam1967adam profile image
adam1967adam in reply to Jpburns

Da Hrvatski.

Orange95 profile image
Orange95 in reply to adam1967adam

I can understand few words in your message, because it is Slavic language not the whole thing. Thank you.

CoastalTex profile image
CoastalTex in reply to Orange95

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.

FortyWinks profile image
FortyWinks

sorry to hear your news, such a shock I’m sure. Hope things go okay.

Orange95 profile image
Orange95 in reply to FortyWinks

Thank you

CousinGrandpa profile image
CousinGrandpa

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 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

Orange95 profile image
Orange95 in reply to CousinGrandpa

This is an amazing group of people here. Thank you for your support

bw1963 profile image
bw1963 in reply to CousinGrandpa

Well spoken.

larry_dammit profile image
larry_dammit

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. 🙏🙏🙏

Orange95 profile image
Orange95 in reply to larry_dammit

Thank you

CoastalTex profile image
CoastalTex in reply to larry_dammit

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?

larry_dammit profile image
larry_dammit in reply to CoastalTex

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

NOCanceros profile image
NOCanceros

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.

Orange95 profile image
Orange95 in reply to NOCanceros

We will contact an oncologist and have a discussion about this. Thank you

vintage42 profile image
vintage42

"... 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.

Orange95 profile image
Orange95 in reply to vintage42

Thank you. Maybe it is too early to tell but he does not have any se of hormonal therapy so far.

NecessarilySo profile image
NecessarilySo

Sorry to hear of your situation. You might benefit from reading my bio. Just click on my name.

Orange95 profile image
Orange95 in reply to NecessarilySo

Okay. Thank you

Scout4answers profile image
Scout4answers

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.

Orange95 profile image
Orange95 in reply to Scout4answers

Will do, he exercises every day. In perfect shape and health, only prostate cancer. No other medications or conditions. Thank you

Scout4answers profile image
Scout4answers in reply to Orange95

I was the same when diagnosed

Xavier10 profile image
Xavier10 in reply to Scout4answers

Scout offers some of the best advice also, acknowledging the experts.

4tunate1 profile image
4tunate1

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.

Orange95 profile image
Orange95 in reply to 4tunate1

Thank you. I do find myself reading about this a lot, maybe sometimes too much.

tarhoosier profile image
tarhoosier

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.

Orange95 profile image
Orange95 in reply to tarhoosier

Thanks

yahussain profile image
yahussain

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.

Orange95 profile image
Orange95 in reply to yahussain

I hope your father stays as healthy as possible. Thank you

j-o-h-n profile image
j-o-h-n

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

Orange95 profile image
Orange95 in reply to j-o-h-n

You are right. Funny but not funny

j-o-h-n profile image
j-o-h-n in reply to Orange95

You just described me to a T......

Good Luck, Good Health and Good Humor.

j-o-h-n

Cheecha profile image
Cheecha

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.

Orange95 profile image
Orange95 in reply to Cheecha

Some of the tests were done there. Thank you

dadsdrdawn profile image
dadsdrdawn

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

Orange95 profile image
Orange95 in reply to dadsdrdawn

I do follow Dr. Geo channel. Thank you

Conlig1940 profile image
Conlig1940 in reply to dadsdrdawn

Dawn,

Your dad had life figured out to a T .

Blueribbon63 profile image
Blueribbon63

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.

JobViktor profile image
JobViktor

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

robert570 profile image
robert570

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.

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