Treatment options: I am 47 years old... - Advanced Prostate...

Advanced Prostate Cancer

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Treatment options

mtechguy profile image
83 Replies

I am 47 years old diagnosed with PC last month with Gleason score 9(5,4) and was advised ADT treatment with Bicalutamide and followed by Lupron 30 mg after two weeks. PSA was 77 in Jan and dropped to 23 after starting ADT treatment and already feeling better with much less urinary symptoms. I was advised to start radiation treatment but doctor advised to wait for PSMA PET scan (Still waiting for scan).

Just wondering if I can do without radiation treatment, since reading material it seems like it's going to have lot of side effects and since I am already feeling better with ADT.

Doctor already ruled out surgery because of spread to lymph nodes and one of the lymph nodes is 6 cm and radiation oncologist advised to wait it shrink before radiation.

Just wondering what are your thoughts for treatment plan?

Thanks

Update: Thanks for all thoughts, after reading all the posts, I think radiation is necessary and I will follow up with Radiation Oncologist once we results from PET scan.

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83 Replies
Tall_Allen profile image
Tall_Allen

You're only 47! Don't you want to be cured if possible? Hormone therapy alone is not a cure. Hormone therapy+radiation may be curative (you can drop the hormone therapy if so). A lot will depend upon what the PSMA PET/CT shows.

BTW, I had radiation 14 years ago with no lasting side effects, and my experience is typical.

mtechguy profile image
mtechguy in reply to Tall_Allen

Of course, I want to get cured, just looking at options.

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

Slow down and heed T_A 's advice.........

Good Luck, Good Health and Good Humor.

j-o-h-n

MomOfMaisy profile image
MomOfMaisy in reply to mtechguy

Thing is, metastatic prostate cancer isn’t really curable. But it’s treatable. And radiation is a good tool to use. Also, I would hope if you have a medical oncologist, he or she should prescribe a 2nd generation drug like abiraterone (Zytiga). My husband was only on bicalutamide (Casodex) for a short time. His urologist said when he met up with an oncologist he would be put on a 2nd generation hormone medication. And he was.

mtechguy profile image
mtechguy in reply to MomOfMaisy

I do have medical oncologist and he is also going to wait for PET scan before prescribing zytiga

MomOfMaisy profile image
MomOfMaisy in reply to mtechguy

Perfect. He’ll have a much better idea how to approach the treatment.

London441 profile image
London441 in reply to MomOfMaisy

His disease is only known to have spread to pelvic lymph nodes, so he absolutely is potentially curable.

Embracing Lupron and wanting to sidestep radiation for fear of side effects makes no sense. Side effects of Lupron are manageable but still are typically much more challenging than from radiation, and it eventually stops working.

Drago101 profile image
Drago101 in reply to London441

Im on Salvage radiation therapy. Today is my 27th session out of 39. No major side effects aside from gas and wanting to goto the bathroom more often. Doesnt mean I cant get other side effects after treatment (blood stool/urine). But so far good. Im 61 and already had radical prosectomy back in 2015.

j-o-h-n profile image
j-o-h-n in reply to Drago101

Old post!!!

My age at the time was: 68 + years old (Fried during Feb. March and April 2005).

I am now 87 years old.

Greetings: Radiation - I've posted this before so to those people who have already seen this please forgive me.

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n

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

So true about the gel spacer. My husband had Barrigel (another brand) as well as the gold fiducial markers inserted at the same time by his urologist prior to his radiation treatment. He was given deep sedation at the outpatient surgery center. He had no issues whatsoever.

MomOfMaisy profile image
MomOfMaisy in reply to London441

I went back and read it again, London441. Definitely sounds more promising than if his mets had spread to bones or even any organs, for sure.

milehigh profile image
milehigh in reply to Tall_Allen

Allen, I completely agree with you. On a separate aspect of mtechguy's post, I've seen numerous posts of people starting Casodex. Is that still the best option with all of the 2nd gen drugs?

Tall_Allen profile image
Tall_Allen in reply to milehigh

Casodex is not a 2nd gen drug. It is one of the oldest and weakest anti-androgens. It's only remaining purpose is to block the AR from the surge of testosterone for about 2 weeks when starting GnRH agonists (like Lupron). It generates a peculiar kind of AR resistance (the AR learns how to feed on it) and generates cross-resistance, so it's a very bad idea to take it long-term.

Seasid profile image
Seasid in reply to Tall_Allen

Do you have any information about Bicalutamide long term use generating cross resistance with Enzalutamide etc. ?

Gabby643 profile image
Gabby643 in reply to Tall_Allen

thanks T A!

spencoid2 profile image
spencoid2 in reply to Tall_Allen

Also had radiation both Brachytherapy and IMRT. No side effects. Don't worry about side effects. Boost your immune system if you feel so inclined. With your PSA at diagnosis and Gleason 9 it is likely that the cancer has metastasized and that radiation will not get it all.

Being young you have a much better chance of living long enough to benefit from new treatments. I would investigate any trials that were not available to me 10 plus years ago. I think there might be some trials of nuclear medicine for the chemo naive.

Tall_Allen profile image
Tall_Allen in reply to spencoid2

I don't why you say unhelpful things like "With your PSA at diagnosis and Gleason 9 it is likely that the cancer has metastasized and that radiation will not get it all.." He will have a PET scan, which will determine whether it has metastasized already. He doesn't benefit from your comments. Also, you replied to me instead of the OP, I assume by mistake. Please take care who you reply to.

spencoid2 profile image
spencoid2 in reply to Tall_Allen

because the statistics support what i said. Dr Grim of the Seattle Cancer (I forget if it was foundation or ??? but whatever it dies with him) Told me what the chances of metastasis was at the time of my diagnosis His information was based on meta analysis of data from a huge variety of sources. Even though this was done 15 ? years ago it was very predictive. Enter the Gleason scale number of cores PSA at diagnosis and all sorts or information was generated. He provided graphs and all sorts of data that I largely missed the importance of. I sort of remember that with my gleason or 9 and psa at diagnosis of something like 27? that the chance that the cancer was contained in the prostate was quite low

others said essentially what i said that gleason 9 and high psa suggest metastatic disease why do you take issue with everything i say?

and scans will not pick up micro metastasis only time will

i replied to the thread and to your reply why do you have an issue with that

you are really such a pest i am likely to leave the group (which is probably what you want) because of you and your BS

TommyCarz2 profile image
TommyCarz2 in reply to spencoid2

You can't argue with someone who is always right, and won't engage in honest debate. Careful, the next step is to have the moderators "Moderate" YOU! I'm inclined to agree with you, as my Urologist cited my Gleason Score AND PSA as predictors of distant metastases , even prior to getting scan results. I've yet to have a PSMA after 5 years of hormone therapy alone. Some folks make better fiction writers than they do doctors. But, there's a seat for every *ss

Boywonder56 profile image
Boywonder56 in reply to TommyCarz2

my dad saying there was a sucker for evry seat..maybe pt barnum originaly..but he owned a l&m dealership...was appropriate when end of model year cars showed up in august...they just threw shite together...

inter100 profile image
inter100 in reply to spencoid2

Did PSMA scan exist during the period of compiling these statistics?PSMA scans take away the guess work

spencoid2 profile image
spencoid2 in reply to inter100

PSMA tests did not exist 11 years ago. There was something similar but not as good and i forget the name. They also did bone scans but both of these tests and also PSMA are not high enough resolution to detect micro metastasis. A healthy body can probably kill moat micro mets and I have no idea what the chance of them becoming lesions is. PSMA merely detects the level of uptake of the radioligand attached radio isotope. The ligands they use are not completely specific. There is background radiation so together with background and non cancer uptake due to the lack of total specificity PSMA can not detect micromets.

Tall_Allen profile image
Tall_Allen in reply to spencoid2

You replied to ME!! If you have something you want to say to the OP, reply to the OP, not me.. I don't usually read the comments others make to the OP, no matter how unhelpful they are. It is for the OP to decide if he wants to do something about it.

spencoid2 profile image
spencoid2 in reply to Tall_Allen

I replied to you because my main point was supporting what you said about radiation not having side effects. Another reply was similar the guy said he agreed with you and then went on about another related topic. You did not complain about that. What do you have against me? "Allen, I completely agree with you. On a separate aspect of mtechguy's post, I've seen numerous posts of people starting Casodex. Is that still the best option with all of the 2nd gen drugs?" This is a reply to you and then an aside to the OP. You did not complain about that. Are you afraid that someone else might have an opinion that does not completely agree with yours and you have to belittle them.

Tall_Allen profile image
Tall_Allen in reply to spencoid2

He is getting a PSMA PET scan, which will tell him if there are detectable distant metastases. No need to alarm the OP with data that does not apply.

spencoid2 profile image
spencoid2 in reply to Tall_Allen

detectable distant mets only not micromets. gleason 9 and psa 77 at diagnosis is considered high risk. at the time of the Grimm study the chance of recurrence with high risk cancer at 5 years was 16% later it becomes more likely. I am not trying to alarm anyone just point out the fact that there may be new treatments in the near future that might kill micromets. Pluvicto is only used in patients who have failed chemo but that is changing in trials now and it is even possible that much earlier treatment might be an option in the near future. Probably not with Pluvicto because of the nature of the isotope and ligand but actinium and copper (64 i think) might show more promise for earlier treatment especially with the new more specific ligands they are experimenting with.

Why make people with high risk disease think that they will be cured with the current treatments when the chances are significant that they won't be.

spencoid2 profile image
spencoid2 in reply to Tall_Allen

This is a link to the continuing study started by Dr Peter Grimm who was my first oncologist. He was a wonderful guy. There are graphs for low intermediate and high risk cancer with "predictions" of things like chance of cancer being outside of prostate and recurrence. The data for these charts came from years of meta analysis of prostate cancer studies. Dr Grimm's group treated over 10,000 patients including me. He went over the chatrs with me and explained that the chance of recurrence was pretty high due to my gleason scale and PSA at diagnosis. The OP is gleason 9 and had a high PSA something like 77. This puts him in a high risk group with a significant chance of recurrence. I was not being "unhelpful "I was suggesting that he might want to explore other options so he does not end up being in my position 10 years later with castrate resistant stage four PC. If you are too cheap to make a donation to get the PDF, I can send it to you but you will probably not read it because it is not a double blink controlled study just the work of a lifetime of one of the pioneers of Brachytherapy treatment.

prostatecancerfree.org/down...

spencoid2 profile image
spencoid2 in reply to Tall_Allen

I entered age PSA and gleason scale in this nomogram. i did not have staging information or number of cores positive and negative in biopsy. The prediction percentages are concerning.

mskcc.org/nomograms/prostat...

diatom profile image
diatom in reply to Tall_Allen

I also had radiation with no side effects

Better than surgery

God_Loves_Me profile image
God_Loves_Me

Please listen Tall_Allen and also build the team of Radiations Oncologist, Urologist , Medical Oncologist and also build plan base on their feedback.

milehigh profile image
milehigh

You really, really want to do radiation. For me, the side effects of EBRT 10 years ago were minimal compared to ADT side effects. Radiation technology has only gotten better.

mtechguy profile image
mtechguy

Thanks all for opinions, I will follow once I have PET scan. Any benefits of adding Zytiga since my oncologist gave me literature for reading on it.

God_Loves_Me profile image
God_Loves_Me in reply to mtechguy

my experience to start with Xtandi. I made mistake that I start Zytiga. if zytiga failed means you have higher chance that Xtandi will not work so doctor will prescribe you docetaxel chemo here is the similar discussion. Please read everything

healthunlocked.com/advanced...

God_Loves_Me profile image
God_Loves_Me

Do you have access to proton radiations treatment ? if Yes go it for it.

milehigh profile image
milehigh in reply to God_Loves_Me

Why? What data do you have that shows better results from Proton? I've had IMRT, SBRT and Proton therapy. I have seen no real documentation in favor of proton therapy.

God_Loves_Me profile image
God_Loves_Me in reply to milehigh

It’s accurate may be

Grommi profile image
Grommi in reply to milehigh

My husband had a proton treatment last year, no side effects and no damage, the PSA went down to 0.05

NanoMRI profile image
NanoMRI

What type of PET? And have you had genomic testing and multi parametric MRI? I based my treatment decision on latter two. Today, I would also have a blood biopsy before decision. I choose surgery and nine years later I remain most grateful I had the primary tumor removed. My focus all along has been to, if it comes to it, to defer ADT/CR/chemo for as long as possible. All the best!

mtechguy profile image
mtechguy in reply to NanoMRI

PSMA PET scan still waiting for it, since I am in Canada it might take a while. No MRI yet.

NanoMRI profile image
NanoMRI in reply to mtechguy

Opps, I see I missed your PSMA note in original posting. 'Even' here in US we often have to be strong self-advocates. There are good reasons to have both mpMRI and PSMA PET, for comparisons, and to get second opinions of the imaging. I learned to not give this beast time and obscurity. As a side note, and especially for young men, in addition to the more commonly understood side-effects, ADT can and does have long term harm to heart and bone health. I did one year on bicalutamide, an added insurance compromise. That was enough for me until a last resort.

WisdomSeeking profile image
WisdomSeeking in reply to mtechguy

Have you had genetic testing? (for BRCA1/2 and other mutations)

And you may look at TallAllen's blog. It's filled with knowledge. For example this posts about dealing with doctors: prostatecancer.news/search/...

MomOfMaisy profile image
MomOfMaisy in reply to WisdomSeeking

Yes, my husband had Foundation One genetic testing, as well as testing on his biopsy tissue. It helps with treatment plans; which therapies work well for particular genetic findings.

MomOfMaisy profile image
MomOfMaisy in reply to mtechguy

Usually the MRI is done before the PSMA PET scan. The biopsies also done before. The PSMA PET scan was what determined where my husband’s metastases are.

timotur profile image
timotur

Mtech, you’re quite young and could handle triplet therapy if needed: Lupron/Zytiga with HDR-BT/IMRT or SBRT, plus early Docetaxel. See what your RO says after your scan comes back.

Jp2sea profile image
Jp2sea

I know it's a bummer to be diagnosed young (I was 42), but there are some good treatments and this should provide extra motivation to enjoy your life now! Cheers

MomOfMaisy profile image
MomOfMaisy

My husband is also Gleason 9 with spread to lymph nodes, seminal vesicles, 2 ribs and scapula. He is on Zytiga (abiraterone) and Eligard injection every 3 months. (Same as Lupron). He finished 28 treatments of IMRT radiation last month with very little issues. Only thing was his urine stream was a bit narrower. But since then it’s getting better. His PSA went down to undetectable after radiation. And of course, with the continued hormone therapy.

mtechguy profile image
mtechguy in reply to MomOfMaisy

Thanks, that’s encouraging my treatment plan looks similar.

gsun profile image
gsun in reply to mtechguy

Where in Canada are you?

mtechguy profile image
mtechguy in reply to gsun

Toronto

SimMartin profile image
SimMartin

I had radiotherapy for Gleason 9 followed by 18 months of LHRH agonist goserelin. I was concerned about the radiotherapy given lots you read but like Tall_Allen it was almost uneventful and apart from the daily hassle of travel (for me into London) and feeling fatigued which quickly went I was almost with no symptoms. The real impact on me was the hormones which was and has been challenging with bone loss despite taking biphosphonates and managing my diet etc slight rise in fasting glucose.

But I am 73 and have polio muscle loss already and use a wheelchair sone if the time long before prostate cancer - so if I had no issues with radiotherapy it’s obvious maybe individual and oncologist and radiology skills that matter.

Also aim for curative intent after all your young and I was put off hitting hard early on and would have gone straight to RT/Brachy plus HT rather than delaying - but depending on the PSMA/CT and the discussions with your oncologist I was go all in now even if a tough journey for better longer term control and even possible full long term remission.

Good luck and just make sure you don’t get too scared off by others as we are all different. (PS get a baseline DEXA and Testosterone but guess you started the HT now so that ship sailed unless you did get one )

turkeyjoe1 profile image
turkeyjoe1

I am also Gleason 9. PSA at DX 106. I had 19 months of lupron and 44 IMRT treatments. Minor diarrhea for 3 days during IMRT. No problems after a few days from completion. PSA now .01

KaChava profile image
KaChava

No! Do the radiation, it will destroy the cancer cells in combination with the ADT.

Seasid profile image
Seasid

Did you have a nuclear medicine bone scan? Some people with only PSA 4 have already bone Mets. Psma pet/ ct with contrast scan may find a psma positive cancer but may miss a psma negative cancer. That's why a nuclear medicine bone scan is a good idea. You could have false positives on the nuclear medicine bone scan.

I was actually diagnosed with the ct alone and the next day the diagnosis was confirmed with the nuclear medicine bone scan. I also wanted to have a psma pet ct scan in order to ascertain that the bone Mets are coming from the prostate cancer.

Survivor1965 profile image
Survivor1965

I was 46 Gleason 9 and PSA 50. This was in 2012. U of M Dr Kinety told me prostate needed to come out but only after 6 months of Firmagon and Docetaxel. 6 months later removed prostate, seminal vesicles, nerve bundles, 30 lymph nodes. All infected. I guess I’m wondering why they haven’t discussed removing your prostate and why mine had to come out, we are/were essentially the same starting point. Moved to Mayo later after a discussion about whole pelvis radiation. Dr Kwon said to hold off on radiation because the horse was already out of the barn, micro-metastasis in his opinion. Plus they told me we can only do radiation once and they thought it best to keep it as a potential future treatment. Now today on Lupron/Xtandi and my PSMA is reasonably clean, also PSA undetectable. It’s been a long haul.

MomOfMaisy profile image
MomOfMaisy in reply to Survivor1965

My husband was told by all the docs that “The horse was already out of the barn”, but that was regarding having his prostate removed. Too late for that with his mets. Instead, his radiation oncologist said that years past all they had to offer men with metastatic prostate cancer was hormone therapy. And more than likely next generation. However he said they’ve determined that radiation CAN have a positive effect, along with hormone therapy. So, he had radiation and continuing on Zytiga, prednisone and every 3 month Eligard injections. So far, his PSA is undetectable. But it’s early, so we know that can change. Keeping our fingers crossed that he continues to be castration sensitive.

EdBar profile image
EdBar

Radiation was pretty easy for me, I’ve had it 3 different times, probably one of the easiest of all my treatments. I too am Gleason 9, I was dx stage 4 at age 54. Gleason 9 is a very aggressive form of cancer, I decided to be very aggressive in my treatment, so far it’s worked out well, 10+ years since dx. You’ll need to wait and see what scans show, but personally I wouldn’t be afraid of radiation.

Ed

CowBellFever profile image
CowBellFever

Look into proton beam therapy as an alternative to traditional x-ray beam technology for your radiation treatment. The targeting with proton beam is more precise and not as much dosage gets delivered outside the tumor targets as with traditional x-rays (thus fewer side-effects expected to develop). There are now 45 proton beam centers located nationwide and more in development.

janebob99 profile image
janebob99

You might benefit from watching recent YouTube videos by Dr. Amar Kishan at UCLA. He is a world expert on the use of SBRT x-ray treatment (5 sessions) and gives great talks. The side effects of SBRT RT are quite small and manageable. You also may want to search for a combined MRI+Linac X-ray machine, which cuts the already small side effects in 1/2 (according to the MIRAGE trial results).

revchris77 profile image
revchris77

Brother, I’m a 46 yo with Gleason 9 and stage 4 at diagnosis over a year ago. Sounds like we had the same urinary symptoms from the start which ADT reduced.

I’ve been through 20 rounds of radiation to the prostate and adjacent bone mets 7 months ago. Don't fear radiation with a good diet (no junk food or alcohol) and exercise the side effects are minimal, and not lasting.

Teacherdude72 profile image
Teacherdude72

To be very direct: you only have two options; radiation or die.

anonymoose2 profile image
anonymoose2

Re: “Doctor already ruled out surgery because of spread to lymph nodes and one of the lymph nodes is 6 cm”

I think TA is speaking for himself and his past results and HIS cure.

Spreading into lymph nodes and beyond is metastatic and no longer contained in the prostate. To confirm that spread the PSMA scan will confirm if it’s spread into the bones. Once in the bones it’s non curable. Then you and your doctors will just slow down the cancer with treatments.

It’s called buying time and hopefully a QOL you can live with. At age 47 you have a fighting chance. If you do have it spread to bones on average you have 7-12 years. Many have less and a few are pushing 20 years or more. Most likely this was just starting to fester at age 45 before any symptoms. If you would have caught it then most likely you would be a lucky one like TA.

Cured!

addicted2cycling profile image
addicted2cycling in reply to anonymoose2

anonymoose2 wrote -- " ... If you would have caught it then most likely you would be a lucky one like TA. Cured!"

Please keep in mind that at the time of diagnosis, luck might or might not prevail. As per T_A's bio info -- " ... I had SBRT for low-risk/high-volume prostate cancer in 2010. Cured. No residual side effects. "

If I recall correctly, T_A was 3+3 with a better chance for a cure.

Scout4answers profile image
Scout4answers

I have chosen therapies based on the following assumptions:

ADT shrinks cancer but does not kill it. Radiation kills cancer but does not necessarily kill all cancerous cells.

My advice is to treat it aggressively up front.

My PSA was lower but also Gleason 9, I am older. See my profile for my results so far.

Magnus1964 profile image
Magnus1964

I was 47 when diagnosed, 31 years later, I am still here. I started with an orchiectomy. That lasted a few years. Then moved on to casodex.My advice is don't let your doctor put any limits on how long you should be on casodex.

Read my biography.

chefjlu profile image
chefjlu

6 years ago diagnosed with Gleason 9. After several scans opted for Radical Prostatectomy. 3 years no treatment as PSA was undetectable. My surgical pathology was 3aPN1 - meaning 1 lymph node showed cancer positive from many removed. At about 3 years a blip in PSA, sent for PET Scan. 1 spot shown in the pelvic region. Put on ADT and scheduled for Radiation. It is now 2 years since that and will be ending Abiraterone in May. PSA undetectable and consensus is in consultation that I am "cured" - remission as it often called. I had little to no side effects from any of it. The PET Scan will determine where the radiation needs to be focused. - I am now 65 and all of my doctors say the same thing - "You're going to be around for quite awhile." ------ Information is great, but be careful, it can become overwhelming and muddle decisions that are based in science and use. There are ways to mitigate side effects in many cases. You need to talk with your doctors and keep them informed. As for radiation, follow the advice they give in regards to dietary changes and needs.

FrostGyre profile image
FrostGyre

(after reading the replies:) Goodness me; the things people put themselves through!

The treatment plan I suggest is:

Stop eating anything that isn't fatty meat. Stop drinking anything that isn't water.

What do you eat and drink in a typical week?

MomOfMaisy profile image
MomOfMaisy in reply to FrostGyre

Did you mean stop eating anything that IS fatty meat? My husband has cut down on his red meat consumption considerably. Drinks almond milk now and eats limited dairy products such as cheese. There are some good meat substitutes at Trader Joe’s that I’ve bought that taste pretty darn good. He also will eat chicken and fish in moderation. You want to avoid processed meats like salami, sausages, lunch meat, ham, etc. In Europe they’ve labeled them as a carcinogen. Too many lobbyists in the U.S. just as there are for tobacco to use that label here.

mtechguy profile image
mtechguy in reply to MomOfMaisy

I don't eat any kind of meat anymore and do use dairy products mostly milk and cream for coffee or tea and lots of yogurt.

Eagleandme profile image
Eagleandme

Hi, I think that you're an amazing person to reach out, take a risk, and ask for this community for treatment options. Good for you! You've taken some flak already for it, but it will be worth it. Personally, I was diagnosed with prostate cancer in 2017 after a path report following a TURP revealed a Gleason 9 (5+4) result. PSA was very low, however, at 1.75. I started on Lupron right away, and went through 50 radiation treatments despite no one finding a definate tumor. A year later, I had back pain and scans revealed large bony tumors in my low back. I underwent Doxetaxel treatments (chemoport is extremely helpful) for four months along with Lupron every three months. Since then, a rib tumor has fractured a rib and I've undergone four more radiation sets at various times in attempts to shrink the tumors (three worked, the last one didn't). Recent scans revealed more bony tumor activity and I have lots of difficulty walking due to pain and loss of control of left leg. I'm now taking Xtandi which has been challenging due to mental side effects. I'm now in palliative care due to cancer and some serious heart problems, made worse from the Lupron. Oncologists have said since the beginning that my cancer, like yours, is not curable but treatable - and they have been proven right. I'm saying all of this because our cancer journeys are just that - journeys - and while some PCs can be cured metastatic PCs stand almost no chance of being cured but can be treated. It is a major adjustment to one's life, and I'm sorry that it's happened to you so young (I'm 73). However, I'm a professional wildlife/nature photographer and I can still get out to enjoy the fantastic beauty that surrounds us. Also, take into account your loved ones - they many suffer even more than you are. I know my spouse does. Take care.

MomOfMaisy profile image
MomOfMaisy in reply to Eagleandme

Thank you for mentioning the spouses. I know as the wife of a man with Stage lV advanced metastatic Gleason 9 prostate cancer, I don’t take this lightly. I also feel the need to help with the management of his ongoing treatments (filling his pill containers and reminding him at times.) Asking him how he’s feeling and so forth. He’s not a man of many words. But also to be there with him at crucial medical appts to lend support and to take notes, even if mentally.

Right now because things are going well after radiation and continued hormone therapy, I feel like I can breathe a sigh of relief. But, I’m realistic enough to know because his cancer is NOT curable, this will be a lifetime journey with many adjustments along the way. Hopefully, he will be one of the lucky ones to co-exist with this disease for a long time to come with minimal side effects/health issues as a result of ongoing treatment. Time will tell.

RodofGod profile image
RodofGod

Diagnosis:

Prostate Cancer Ductal Variant Stage IV.

Gleason score 8.

Have you considered chemotherapy?

After RP surgery I went from clear to spread in under a year... Lower abdominal lymph nodes affected.

Course of action:

Lupron quarterly. Six Taxotere Chemo treatments. One every three weeks.

Followed with 1000 mg of Abiraterone Acetate daily, chased with 5mg of prednisone twice daily.

Results thus far < 0.1

I liken Chemotherapy to ROUNDUP for the body... It circulates through the system killing those little bastards regardless of where they are hiding... The trick is to be stronger than the treatment.

Regards,

Ron

SeosamhM profile image
SeosamhM

You certainly brought out the crowd, mtech! I won't necessarily repeat what has been said because you are already thinking intelligently about your path. However, I will reinforce the opinions here with my own: You need to go for the brass ring of cure/long-term remission without ADT. Be aggressive now while metastasis count is low and you are young.

You are in a better spot than I was at 48 to avoid the draining reality of forever ADT. To be clear, I am going on 8 years post diagnosis and am very thankful to be here. And while it has been an unpleasant treatment journey at times, I have been able to tolerate all treatments and I worked for 5+ years after diagnosis.

But if I could have avoided ADT and the multifarious side effects it has by just going through temporary ADT, surgery, chemo, and radiation, I would have done it. Instead, with ADT forever taking my legs out from under me, I am working my way through all of the other treatments: So far, early chemo (taxotere), repeated met radiation, Provenge (immunotherapy), Zytiga, and Pluvicto. Honestly, none of these have had side effects that match my experience of systemic weakening caused by years of ADT.

Good luck, brother! - Joe M.

MomOfMaisy profile image
MomOfMaisy in reply to SeosamhM

May I ask when this systemic weakening from ADT and ARPI begin? My husband has only been on abiraterone (Zytiga), prednisone and Eligard injections every 3 months for maybe 4.5 months, but he has responded VERY well. No side effects except a few hot flashes early on. Even then he didn’t even know if it was the portable heater causing it or the meds. Either way, he’s felt great. And that was also after radiation. He exercises regularly and eating far less meat and dairy. So, is it a cumulative thing? The longer he is on them he can expect more side effect or health issues? So far his metabolic lab results every 2 weeks (liver is the key test) have been within normal range. I just want to know what to expect going forward and if ALL men experience what you described regarding the side effects.

SeosamhM profile image
SeosamhM in reply to MomOfMaisy

Hi, MOM. I am really speaking about long term effects (years). Every man's specific response to ADT is, of course, unique.

It sounds like you and your husband are already thoughtful on the topic, so I will let you perform your own research. Here is a great summary of ADT's physiological effects:

ascopubs.org/doi/10.1200/JO...

And here is a good article on the psychological effects (less understood but as relevant):

urologytimes.com/view/neuro...

As for if and when your husband may encounter such side effects is uncertain but, anecdotally at least, I think the vast majority of us here on HU have encountered a significant ADT side-effect that requires a specific coping plan/action. For me, the cumulative ADT "brain fog" is particularly unpleasant. I have many of coping mechanisms and habits, but it is still like being stuck in mental molasses at times.

This forum is a great resource to search for specific topics like "ADT side effects" to see posts on the spectrum of men's experiences. Or feel free to make your own new post to ask about ADT side effects - I'm sure that it will be popular! A lot of us really do like to (over?)share here! - Joe M.

MomOfMaisy profile image
MomOfMaisy in reply to SeosamhM

Thank you, SeosamhM, (Joe)

I was referring to long term effects. Just wondering when and if these side effects start becoming more of a problem. Of course, as you said, it just depends on the individual. Sometimes when I read about the brain fog, mood changes, and extreme tiredness among men on ADT and ARPI, I look at my own husband and wonder why he’s been spared from these issues—for now. I keep wondering if this is the calm before the storm. It’s easy to almost be in denial when he’s feeling so well and his PSA is undetectable—at this point. Thank you again. And feel free to share away! I’m here to absorb it all. :)

SeosamhM profile image
SeosamhM in reply to MomOfMaisy

You are very welcome, MOM. You obviously are seeing the PCa playing field very well - your husband has a great partner in this journey!

Professorgary profile image
Professorgary in reply to MomOfMaisy

I have been on Abi low dose with food since Sept 23 and Lupron since May 22. My labs are good. Psa dropped from 5664 May of 22 to 1.02 Mar of 24. Great quality of life. I hunt, fish and do my work around the house. My Dexa scan showed normal bone density, it was taken Dec. 23. These drugs are hard on the body so I researched supplements that help the heart, liver, bones,nerves, insulin resistance as well as slowing the cancer. I came up with curcumin and magnesium. The first thing the doctor wants you to do is take calcium for bone health. If you take calcium without magnesium the body can’t process the calcium and it can end up in the arteries, well that’s not gonna help. Please do not take my word for this. Research it for yourself. You will soon find that few people are calcium deficient and over half are magnesium deficient. I have never had a doctor suggest taking magnesium. Also google curcumin and magnesium for blood pressure. God bless.

mtechguy profile image
mtechguy in reply to Professorgary

Did you do radiation also and what was your gleason score?

Professorgary profile image
Professorgary in reply to mtechguy

My Gleason was 3+3 back in 2000 and again 2003. I had no treatment until 2022 when Psa skyrocketed after Covid and pain got severe. No surgery or radiation or chemo. To God be the glory. Psa went from 900 in Nov of 21 to 5400 in May of 22. God bless.

garyjp9 profile image
garyjp9

Your update is spot on. If your medical oncologist does not specialize in genito-urinary medical oncology, you may want to find such a doctor asap. They are not plentiful, but depending on where you live, T_A and others here can suggest some good ones to you.

Tommyj2 profile image
Tommyj2

glad you made the decision to radiate……it’s the only way to substantial improvement if fortune smiles upon you.

Hohman profile image
Hohman

I was diagnosed in 2016 at the age of 54. I did have mine removed but then it had already spread so i did 37 rounds of radiation and started lupron which took psa to 0.01 from starting at 69. That treatment of the 3 month depot shot of Lupron worked for about 5 yrs...then they added Darolutimide (Nubeqa) after my psa started to rise. That took it back to 0.01 for about 2 yrs. Now it has Quadrupled, dupled up past 40 and I am currently awaiting to begin an immunotherapy trial! I hope this helps to give you insight to know there is usually one more thing they can try!! I think its best to blast it with all that you can! I am not an expert

Bodysculpture profile image
Bodysculpture

I was diagnosed Gleason 9 in 2019 They did the stampede trial

Docataxal, then radio therapy followed by ADT within 6 months

I have had a good response PSA now 00.7

Hope this helps

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