My offered treatments for my intermed... - Advanced Prostate...

Advanced Prostate Cancer

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My offered treatments for my intermediate prostate cancer

BB_1 profile image
BB_1
49 Replies

1. Prostatectomy (Remove prostate).

2. External radiation beam(using spaceoar).

3. Sound waves-HIFU

4. Cryotherapy (Freezing )

1 is not an option for me right now. Leaning Radiation or Sound waves. Feedback is welcomed. Thank you.

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49 Replies
Tall_Allen profile image
Tall_Allen

Read these:

prostatecancer.news/2018/10...

prostatecancer.news/2021/03...

prostatecancer.news/2016/12...

Take your time.

BB_1 profile image
BB_1 in reply toTall_Allen

Thank you!

cesces profile image
cesces

None of the above for various reasons.

Take a look at sbrt / Cyberknife radiation therapy perhaps supplemented by seeds.

Hifu and cryo are sort of discredited.

Letting a urologist cut you up is the last option. They all minimize the side effects. Like buying a course from Trump university from Mr. Trump.

With sbrt you don't need the dubious spaceoar either.

Sbrt is least likely to leave you with surprise side effects or damage.

Study those links Tall Allen gave you. Its the best source of high quality predigested info on the subject you will find anywhere on the internet.

BB_1 profile image
BB_1 in reply tocesces

thank u

in reply tocesces

HIFU seems to have only been 'discredited' by those on this forum who haven't actually received this treatment.

cesces profile image
cesces in reply to

in what manner is it superior to sbrt or prostatectomy?

What does the research say as to how it compares?

in reply tocesces

I didn't say it was superior to anything; I just challenged your notion that it has been 'discredited'. It is less invasive than prostatectomy so little fear of the worst outcome -- incontinence. As far as SBRT goes, I've heard enough radiation damage stories on this site to steer me away from that and towards HIFU. To each his own as they say. OK, I did disparage cryo-ablation in another comment.

cesces profile image
cesces in reply to

I have an open mind. I just thought there was a reason that it has not seen wider adoption.

My recollection is that its sort of hit or miss.

I believe sbrt doesn't have the same radiation problems as imrt radiation treatment.

Thinking about it, if it is truly as innocuous as you indicate, maybe it makes sense to supplement ADT treatment if you are going to otherwise going refuse sbrt or prostatectomy.

in reply tocesces

I got one 6 month ADT injection as a prelude to radiation but I then chose the HIFU route instead. My local (not HIFU) urologist recommended 18 more months of ADT. Nope. I refused. How would I know the efficacy of HIFU if ADT kept my PSA suppressed? Why would I volunteer to be a eunuch again? I've been 5 years free of ADT. My prostate is still there. My PSA has slowly risen to 1.8 and hasn't budged in six months. HIFU has been great for me. Data point of one, admittedly. I have been taking metformin and supplements like DIM and IP-6 Inositol and MCP. At any rate my urologist commented that my Gleason 8 cancer "certainly isn't acting like an aggressive cancer".

cesanon profile image
cesanon in reply to

"How would I know the efficacy of HIFU "

I really think you are making a mistake here.

You aren't seeking knowledge. You want to kill it, and error on the side of over kill.

So if your doc is saying use ADT in addition, it would seem risky behavior not to do so.

He is the one that learns, by doing it over and over and over. You have only one instance on which to learn and failure is not an option.

And if in any doubt, in addition to HIFU, hit it with seeds plus ADT, as opposed to doing les.

Just one man's opinion

in reply tocesanon

My PSA went to undetectable after HIFU and the ADT wore off. That's what I meant by efficacy of the surgery -- I wanted to see where my PSA went absent the effect of ADT. My HIFU surgeon was in agreement. That was me seeking knowledge and not blindly following doctor's orders. BTW that 2 years total ADT treatment? That is SOC for RP. It is easy for them to prescribe that, not so easy for someone to deal with it and why make that quality of life sacrifice? My T came back and I was good to go. Many who suffer the two years of ADT never get their T back ... and good luck getting a doctor to prescribe artificial T treatments when you have prostate cancer. My urologist has been monitoring my PSA all along, for the last six years now. An Axumin scan last December showed no activity. I'm not living dangerously. I'm fine. I don't believe in over-treatment just as I didn't believe in over-engineering a problem when I worked that field.

cesces profile image
cesces in reply to

WSOPeddie

One too many confounding variables on a trial on n=1.

Oh, and how do you know the real cause wasn't prayer?

Personally I'm just not into faith based medicine.

in reply tocesces

What are you even talking about?

cesces profile image
cesces in reply to

Faith based medicine?

I don't know how to say it with more clarity.

Well let me try.

There are certain demographics of people who

(1) Search out information to reaffirm emotionally comforting pre-existing views.

(2) Are unaware they are doing so.

(3) Engage in risky or self destructive behavior. And

(4) Most notably proclaim "they have done their research" ans then attempt to proselytize or impose their views on others ( which I don't think you are doing by the way).

And when challenged to justify the beliefs on the basis of fact... revert to some version of "I did my research, you do yours".

I hope that was of sufficient clarity.

maley2711 profile image
maley2711 in reply to

TA documents less than impressive study efficacy for HIFU/TULSA PRO.....of course we must be careful to agree about what we are comparing....focal ablation or whole gland ablation...they would have different efficacy results. Side effect s are not zero with those alternative treatments. Any single patient may luck out and have great long-term results with any of theses treatments... TA publishes on studies that provide probabilities of success....unfortunately, randomized studies are lacking, so we're left with non-optimal comparisons.

in reply tomaley2711

TA is no more a doctor than you or I. I did my due diligence before I chose HIFU. Enough said.

cesces profile image
cesces in reply to

"I did my due diligence"

uffff

Where have I heard that refrain before?

in reply tocesces

When you can't debate, type out a snarky response. Got it.

cesces profile image
cesces in reply to

"I prefer not to speak. If I speak I am in big trouble ' and I don't want to be in big trouble." Jose Mourinho

Sorry, I have been asked to refrain from certain topics.

maley2711 profile image
maley2711 in reply to

I said nothing about TA or anyone here being a Doc... yet I will not reflexively reject

the studies someone cites, just because that person is not a Doc. Did I say anything about your having done or not done your own due diligence......unfortunately for me and others, we are unaware of the type of due diligence you did. With someone like TA, we see actual studies with data... conclusions can be accepted or rejected by each reader....just as we accept or reject the advice from any certain Doc.

in reply tomaley2711

I talk to and trust real doctors. Not someone who pretends to be one on the internet.

maley2711 profile image
maley2711 in reply to

So, posting studies is pretendingto be a Doc? We disagree. Who here pretends to be a Doc ?.....I respect most Docs, but don't worship them. A paper I wrote in an appeal to Kaiser had some part to do in a change in protocol for PCa patient diagnosis....at least that is what I was told by a 3rd party.

I'm very thankful to all those who post topical studies here, and I've never observed anyone pretending to be a Doc? where do you get that??

Seasid profile image
Seasid in reply to

i think it makes a hifu "crust". I belive hifu is for less agressive cancer. I am not an expert. I would think twice.

in reply toSeasid

It is for cancer that hasn't escaped the prostate. Due to the focusing limits of the equipment it is also limited to prostate sizes approximately 40 cc, as I recall. Crust? The tissue is heated to a temperature high enough to kill it but well below the boiling point. It does cause temporary swelling hence the need for a 'supra-pubic catheter' SBC. Drilled right through your abdomen directly into your bladder. mmmm ... 😁

cesces profile image
cesces

given the quality of advice you are getting, double check that you are starting with good diagnosic tools. You probably aren't.

You need 2 scans. One looking for psma cancer cells, and a second looking for non psma cancer cells.

If you have not done both scans, no one can make an intelligent and informed treatment decision.

TA's website has lots of info on this subject.

nofearmfd profile image
nofearmfd in reply tocesces

Age and life expectancy are also important subjective criteria. I was 70 when I made the decision for RP. Genetically, there is a very good chance that I will live into my late 90's. Since I had another 25+ years and didn't want to be dealing with more prostate issues in 10 years. I had intermediate cancer in the prostate and membrane, and it was growing rapidly (based on several years of scans and biopsys). Easy decision. So far after 2 years, my PSA is still non-detect. The downside is that I am still slightly stress incontinent during the day and 100% impotent and Viagra doesn't work. Just enjoy massages with your significant other. You don't lose any of your benefits from manhood.

maley2711 profile image
maley2711 in reply tocesces

what is the non-psma scan named?

cesces profile image
cesces in reply tomaley2711

I don't remember. Take a look at Tall_Allens blog site.

in reply tomaley2711

Axumin?

MobilityTech profile image
MobilityTech

You really need to go talk to a eurologist, an encologist, a radiologist, and your doctor, and maybe more than one of each.

What finally made me go for surgery was when my radiologist said, " what you need to know, is eurologists prefer surgery, and radiologists prefer radiation. And what I am saying as a radiologist, is you should have surgery."

That pretty much answered my question.

MSPCF2021 profile image
MSPCF2021 in reply toMobilityTech

same, here.

Pintor profile image
Pintor

I had a robotic prostatectomy on June 3rd,2022, because in the results of the biopsy there were areas of tissue that the pathologist considered to be "aggressive". I did not want to go through radiation because of the inconvenience, long term side effects and no certainty that it would work. Surgery was successful. Uncomfortable for 2-3 weeks post op. I am 75 years old. My PSA after 2 months post surgery was "undetectable". At this point I only have stress incontinence. Went from using 4-6 depends a day to only one a day. Much improved. Still, it's the 6 months post -op PSA that really counts, but my Urologist is very confident the tumor was contained to the prostate, so he considers me "cured". Hope so. Hope this helps.

BB_1 profile image
BB_1 in reply toPintor

thank you. I will try radiation over removal at is time.

Pintor profile image
Pintor in reply toBB_1

Good luck to you!

maley2711 profile image
maley2711 in reply toPintor

Let's be honest...no guarantee that any treatment will "work". Many men with failed surgery are participants here...as are men whose radiation failed.

BB_1 profile image
BB_1 in reply tomaley2711

let's see what will happen

arcflashed profile image
arcflashed

years ago this month I had a gleason score of 3+4. I chose to have a protatectomy . My PSA has remained .0019 which is more or less undetectable. The radiation therapy sounded easier and less invasive but as I looked into the side effects that others were dealing with from the radiation therapy especially after about 10 years I chose to have it removed.

arcflashed profile image
arcflashed in reply toarcflashed

Five years since my surgery

ron_bucher profile image
ron_bucher

Your age and life expectancy are the most important factors to consider. Count on a lifelong battle regardless of which treatment(s) you select. Diagnosed with Gleason 7 in 2006 at age 54, I've had RP (non-robotic), external beam radiation two separate times, and Taxotere. My worst side effects are the 20 pounds gained from Lupron. Glad I used every tool in the tool bag at each step. Planning to shoot my age in golf.

jfoesq profile image
jfoesq in reply toron_bucher

Ron- we have a few things in common. I had my prostate removed (along with more than 30 lymph nodes a few months after my DX in 2012 at age 54. I have basically been on Lupron and Zytiga for most of the time, except for 3 vacations. I just had my largest tumor, located in my left hip, radiated a 2nd time. I was never on Taxotere , but I too gained about 20 pounds (along with 'manboobs" that I really detest having). One diff between you and me is I have no chance of shooting my age in gold, although I would like to get back to shooting in the 80s again, following my recent return to the game, after several years off. Bethpage Black killed me last week after I somehow was able to par the 1st hole. Boy- taht's one tough course to play and to walk. When I was younger I once got to play the Black 6 times in 8 days carrying my bag. Nowadays, I walk it once and need a few days to recover both mentally and physically. Good luck in shooting your age.

Histbuff profile image
Histbuff

BB-1--I'm afraid I can't be much help. My prostatectomy was back in 2008, a long time ago. I was pretty anxious about it but it went well. I was playing basketball within two weeks of the surgery. The worse part was when they took that tube out of my penis.

I almost had my cancer licked. My surgeon said that the surgery went well and that my lymph nodes were clean (though he took them out anyways). One problem--he found 3 pin-prick holes on the right side of my prostate and he said everything would be depend on whether or not any cancer cells leak out through those holes. Of course they did and that's why I've been fighting off prostate cancer ever since.

Good luck with whatever treatment you choose.

I chose HIFU and I am doing just fine 6 years later. No negative quality of life consequences. HIFU provides precision temperature and position feedback during the process. By comparison Cryo is a blunt instrument. HIFU being somewhat new in this country be sure to find an experienced practitioner if you go that route. Oh, and go with full gland ablation. Focal ablation is too likely to leave areas untreated that could then become problematic. I had TURP surgery for BPH prior to HIFU. You might need that for full gland ablation.

BB_1 profile image
BB_1 in reply to

Than you

addicted2cycling profile image
addicted2cycling in reply toBB_1

cesces wrote --- " .... Hifu and cryo are sort of discredited ... "

Just sayin -- 2015 GL10 right half taken out with Cryoablation. Working so far.

John347 profile image
John347

I'm 70 and was also diagnosed with moderate PC (Gleason 3+4=7). I opted for radiotherapy with SpaceOar. Just finished 20 sessions of IGRT. Minimal side effects of fatigue and frequent urination which will diminish over a few weeks.

I had a single 3 monthly lupron jab in mid June. My PSA reading decrease from 28.5 to 0.57 (tested on 2 September). My oncologist said there's no need for a 2nd lupron jab if PSA<1.

I researched extensively on the internet before deciding on radiotherapy. The following video is one of many that helped convinced me to take the radiation route:

youtu.be/Pya8N78bR7s

BB_1 profile image
BB_1 in reply toJohn347

thank u

in reply toJohn347

Check out his book too: "Invasion of the Prostate Snatchers".

reillybars profile image
reillybars

I was diagnosed with aggressive PC in Oct 2014. My urologist said his uncles used the seeds. My decision was to have the surgery in January 2005. I went to Dr Patel in Orlando Fl as he had performed over 7000 of these.My experience was excellent , however 3 months later PSA was detected and began doubling every month. Radiation was the next step but I declined. A well respected Radio Oncologist told me I would be dead in 5 years. I started Lupron and it was effective. Did not like the side effects so I went on an all green diet and dropped 30 Lbs and felt great, however the cancer was still there as I had stopped getting my 3 months check ups. It went into my bladder and for the 1st time I now understood that I had cancer, because I had to pee every 25 minutes. It was scary. I resumed treatment with Lupron and told my oncologist in Clearwater Fl that I wanted to go with Lupron and Zytiga ( learned about this from heathunlocked). My PSA went from 77 in November 2017 to being undetectable . It has remained so as of my last test aug 2022.If surgery is chosen then be sure to have them do a chemo regimen after. That was not done for me but I believe more oncologist are doing this. I eat regular food but try and limit sugar intake to occasional deserts. Also drink alcohol in moderation . I exercise by walking daily and I am a positive thinker who loves engagement . Also believe in a higher power ( am a J.W. ). Each person must decide what they are comfortable with, do the research , select the best practitioners , eat a balanced diet, and enjoy life with those who you love and love you back. In this world we must recognize calamity affects everyone ( the good, the bad, and the ugly)🤓

BB_1 profile image
BB_1 in reply toreillybars

Thank you.

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