Need input on ADT, Brachytherapy, etc. - Advanced Prostate...

Advanced Prostate Cancer

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Need input on ADT, Brachytherapy, etc.

CarrotBoy profile image
21 Replies

Hi folks. I have a diagnosis of 3+4 with PSA of 21. I am on the fence and cannot decide which treatment to get. My doctor wants me to get the ADT (hormone therapy) to shrink the prostate so we can then do Brachy "seeds'. My family wants me to get it out with surgery.

I have locally spoken to 3-4 men who had their prostates removed. I dread having surgery and getting some tubes cut. But I cannot find anyone who had external beam or "brachy" to learn about their experiences. I fear one of these treatments may require a "poop bag" but I don't know which one?

If you were in my shoes would you get the ADT hormone therapy? How is life with that? For 2 months I have been taking a daily rotation of super anti-oxidants (including Quercetin, resveratrol, selenium, curcumin, K-2, apple cider vinegar, blueberry extract, pomegranate, beta carotene and more) in hopes of avoiding the above harsh treatments.

Some good news... I got a new PSA yesterday (April 24, '20) and my PSA went from 21 to 8.5 I know I have a long way to go, but I credit my improvement to eating totally wise and about 12 supplements, including horrible apple cider vinegar. Just got a great mushroom blend called ImmPower. Does anyone know if MSM is good for cancer? Thank you all. CarrotBoy in PA

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CarrotBoy
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21 Replies
timotur profile image
timotur

Carrot, a PSA of 21 is considered to be in the advanced-risk category of PCa, and you need to take some steps to determine your stage-- Stage 3 or Stage 4. A 3P-MRI would indicate if you have extracapsular extensions (ECE) of the tumor through the wall of the prostate or to the seminal vesicles, and a PSMA scan would indicate if you have metastasis to LN's or bone. That will give you more information on deciding which options to take. If you have +ECE or +SV, then radiation is a more likely choice by most, but not always.

I was PSA 29 +SV +LN Stage t3b at diagnosis and chose HDR-BT + IMRT + ADT (see profile). It worked out well with no side effects other than those from a year on ADT. YMMV.

Encourage you to search terms like "Brachy" on this site to spin up on the details to have a good discussion with an MO and RO about your options on the radiation side. Main thing now is to get some imaging and know your stage before making a decision.

BTW: diet is not a cure, but may slow down progression.

Tall_Allen profile image
Tall_Allen

Brachy does not shrink the prostate, ADT does. Seeds cannot be used on large prostates. If your prostate is too large for seeds, they will shrink your prostate for several months with ADT first. The external beam radiation (EBRT) part of the treatment can be done before or after.

There is another kind of brachytherapy, called "high dose rate brachytherapy" that can be used instead. The size of your prostate does not matter as much. It is not available everywhere - where are you located.

You should have already gotten a bone scan/CT. There is a new kind of PET scan that you can purchase at UCLA for $2784:

healthunlocked.com/prostate...

The most worrisome side effect is urethral stenosis, not rectal.

You have to stop taking all antioxidant supplements during radiation - it defeats the purpose.

I had robotic surgery, which is very precise and non-invasive. Find an experienced surgeon with a lot of procedures under his belt.

CarrotBoy profile image
CarrotBoy in reply toHopingForTheBest1

Thank you.

mcp1941 profile image
mcp1941

I was DX in Jan. 1996 with G 4+3 and PSA 95. I got 2nd, 3rd, and 4th opinions on treatment. All said surgery was not indicated due to high PSA. Bone and CT scans were negative. I chose combined radiation. But just as Tall Allen said about large prostate I had to do 8 months ADT to shrink the prostate. I had 5 weeks ebrt then 2 months later seed implant. Treatment was successful for 15 years. For the last 9 years I have been fighting recurrence. Zytiga is failing me now and I can't receive chemo at this time because I am recovering from a stem cell transplant due to multiple myeloma.

CarrotBoy profile image
CarrotBoy in reply tomcp1941

Thanks for your info. I am sorry to hear about your recurrence. Do you recommend ADT? A friend of mine who had his removed said don't go the hormone therapy route, for what that's worth. My doctor wants me to do ADT to shrink the prostate - then do radiation EBRT. Can you still feel any sexaul arousal with ADT? Are erections still possible? What is life like without testosterone?

mcp1941 profile image
mcp1941 in reply toCarrotBoy

I had 8 months of first line ADT and stopped Lupron and Casodex on the day I had seed implant. That worked for 15 years. NO SIDE EFFECTS. Testosterone rose to low normal and was able to have sexual arousal and erections for 8 years then needed viagra for an additional 5 years. Finally nothing worked anymore for sexual arousal and erections. When I had BCR MO put me on Casodex again but that only lasted 3 months before PSA started rising. Start 2nd line ADT (Lupron and Zytiga). Was on that combo for 9 months then went on a 2 and a half year holiday then I again had BCR and was back on Lupron plus Erleada. Only lasted 3 months before PSA started rising again. In June of 2019 I was DX with Multiple Myeloma and and had 4 months of chemo and in Dec 2019 I had a Stem Cell Transplant. In the meantime PSA was holding steady with only 1 or 2 hundred increases. Right now I am back on Lupron + Zytiga with a slowly rising PSA. I still don't have any detectable mets.

I was DX with PCa at age 54 and I am now 78 years young. Been married 51 years. The new normal is hugging, kissing and telling your significant other how much you love her.

Both. In 2003, I had 118 Palladium seeds and 25 sessions of IRMT as basic primary treatment . I was Gleason 7 (4+3). PSA - 6.8.

Gourd Dancer

CarrotBoy profile image
CarrotBoy in reply to

Thank you. But is that working for you? Are you in remission/recovery?

in reply toCarrotBoy

I was too late. I already had micro-metastasis. So when I developed Mets at 11 months confirmed, I enrolled in a six month clinical trial of chemotherapy plus hormone therapy plus some orals in 2004. I have been undetectable since 2005. Able to stop Lupron in 2010. Still undetectable. I was most fortunate. After primary treatment in 2003, j had monthly PSA and T to track. This enabled me to get the jump when Mets developed.

Good luck in which course you choose.

CrowMama profile image
CrowMama

My husband had a psa of 2, but a gleason score of 7--he had intraductal cancer, which is rare and aggressive (though it doesn't raise PSAs very much at all). They offered him a prostatectomy plus external beam radiation, or brachytherapy plus external beam radiation. He was 52 at the time, and once his bone scan and MRI/CAT scans came back clean, he opted to go for brachy therapy and external beam radiation. The surgery for brachytherapy was not fun, (he came home with a catheter for a day, which wasn't ideal) and he had some side effects for the first year (moderate ED, exhaustion, soreness in the prostate which made sitting on hard chairs impossible). He had minimal side effects from the external beam radiation besides chronic fatigue. He needed to take flomax for about three years as well.

But, he's 57 now and though his PSA hasn't gone down to 0 yet (he's had some post-radiation swelling, that after another CT scan, MRI and PET scan was determined to be just inflammation and not cancer), he's doing great. He still takes vitamin E and trentol for the radiation swelling, but stopped taking flomax about a year ago and his PSA has continued its slow slide toward zero. (We were told that with brachytherapy/radiation as opposed to a prostatectomy, we may never get to zero because there are still living prostate cells).

All this to say: we spoke to a lot of doctors at the beginning and did a lot of research before choosing brachytherapy/ebr.

Best of luck to you!

CarrotBoy profile image
CarrotBoy in reply toCrowMama

Thank you very much. Your message was helpful to me. What is PET? So he is glad he got the brachytherapy?

CrowMama profile image
CrowMama

PET was a scan—it can see at the molecular level. He is glad he got brachytherapy over surgery but I also know it isn’t for everyone. I’d definitely advise speaking to a lot of doctors before deciding.

Tall_Allen profile image
Tall_Allen

Makes more sense :-)

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

First of all you will not require a poop bag unless you have a dog and live in the city.

Now take it easy do not panic... Pca is slow growing. Tell us more info about yourself age? location? and you present health (excluding Pca)? All info is voluntary but it helps us help you and helps us too.

Ask here for a recommendation for the best MO in your area.

RPD = surgery.... Most of the time (unless you have a great surgeon) you can forget that 3 letter word SEX. Also incontinence can be a problem. I don't want to paint a grim picture but it is what it is.

Seeds are another story and I did not go that route... but ask here.

UO will Operate

MO will Medicate

RO will Radiate

Keep Posting here, Keep eating those carrots but not the peels.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/23/2020 7:03 PM DST

Govend profile image
Govend

I had Gleason score of 6 and psa of approximately 9 prior to brachy.Managed to bring psa down to 4 but then it metastases into glands.Started 3mthly hormone injections and psa dropped to below zero.Last year started treatment with xtandi to keep metastasis in check.Everything going well so far.Had chronic severe pain for about 24mths post brachytherapy but apparently this is very rare.No incontinence.

Surgery I feel should b ur last resort as it apparently has horrific side effects notably incontinence.

Horse12888 profile image
Horse12888

To answer your question re: ADT SEs: There are people, like the guy above, who experience none whatsoever. They are rare, perhaps 10%. At the other end of the spectrum, there are people for whom ADT is torture, and become suicidal. I was one, but this too is rare.

Everyone else falls somewhere in the middle and, as far as I'm aware, there's no way to know in advance what the experience will be like, which is one of the reasons doctors gloss over the subject.

IMO, the biggest factor is the length of time you're on the treatment. I was hit hard when the SEs kicked in (~1 month in), but I was tolerating them fairly well until about 8 months in, at which point I went downhill into depression and physical misery in a hell of a hurry.

I believe that literally anyone can stand it for 6 months. By the time you start to suffer, you'll be seeing light at the end of the tunnel, though it takes 4 - 6 months for your T to recover, so a 6 month treatment is actually about a year of the SEs.

I would get another opinion to verify that the benefit is worthwhile. It's a distinctly unpleasant experience for most men, and it can have a nasty effect on a romantic relationship. The lack of sexual desire and capacity means that women are no more attractive than garden equipment, and some wives have issues with that.

If you're going in this direction, I recommend you get Dr. Wassersug's book, and read with with your wife/GF.

CarrotBoy profile image
CarrotBoy in reply toHorse12888

THanks for writing. I followed some of your message, but the abbreviations on many posts are leaving me at a loss. What is IMO? And SEs? (Seed implants?) I figured out GF, girlfriend?

45RPM profile image
45RPM in reply toCarrotBoy

abbreviations list is a Pinned Post, top of this page on the right side

Hope59 profile image
Hope59 in reply toCarrotBoy

In my opinion and side effects

ctarleton profile image
ctarleton

I concur with the suggestions for you to take some time while you consider all your initial treatment options. A lot of general back ground information and terminology can be found in various prostate cancer Patient Guides. Here are free links to just a couple of them:

nccn.org/patients/guideline...

If you may be worried about things like managing your expectations about sexual functions following any of the typical initial curative-intent treatments for early prostate cancer.

You might also find some "gathering your thoughts" value in reviewing some "questions to ask" entries on Tall Allen's "Prostate Cancer News, Reviews, and Views" website. Here's a good place to start for the various types of Interviews you may have with various initial prostate cancer treatment specialists.

pcnrv.blogspot.com/search?q...

Charles

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