It's the tumor stupid

[traxcavator]

I was dealing with a urologist in Nashua, NH when the panic started. He didn't answer the phone from March until November or December. During that time, my PSA went from quite low to fairly outrageous. That urologist then 'flew the coop'. Since I wasn't thrilled with that practice, I started looking elsewhere.

I went to Dr. Francis McGovern at MGH. I liked and trusted him. When he said I wasn't a candidate for prostatectomy, I was willing to accept his decision. He gave me Gleason scores and stages.

In August 2021 a significant part of the tumor was cooked with "Focal Laser Ablation". That knocked it back. However, over the past year, my PSA has been rising again. I don't believe repeating FLA would be effective at this point. I had no other treatment until August 2022.

I am convinced that any curative treatment will most likely involve hitting the tumor directly.

I'm extremely frustrated that the establishment is run by "Faucis" in Washington. They are the kind of people who will always choose the lowest perceived risk alternative no matter what. Their continuing to cling to the conventional means that 30,000 of us will continue to be marched off to die each year. We should be deciding what risk we're willing to take not bureacrats who have "no skin in the game".

I've been following the posts here on AMG 509 and LU-177-PSMA. I'd be willing to try the AMG 509 tomorrow. I may go to Europe for LU-177-PSMA. The bureaucracy says those and other treatments that may be curative are reserved for patients for whom castration and radiation have failed. The bureacracy also wants us to wait for five year survival numbers. That means even if there is a cure, another 150,000 of us will have been marched off to die in the interim.

[Dannyboy48]

firmagon or lupron hormonal treatment is my suggestion but I’m not a Dr.

When I was diagnosed it was about 6yrs ago and I had Gleason score of 9 , , , I believe and 3 Mets in pelvis . Took xgiva for 2 yrs which stopped the bone Mets till I got dead jaw syndrome 😂😂 which made many people happy🤬. Dead jaw syndrome was fixed two years later and it was no big deal. Have been living quite a normal life for the past six years my only real complication was ED and last year had problems with urination. My PSA started at nine and for the past six years it stays between two and three.

2 1/2 weeks ago I had green light laser ablation of the prostate. My only regret was I didn’t do it a year ago. A little discomfort nothing crazy that a few Tylenol could not handle. So happy to say I now piss like a racehorse have to teach myself to not stand too close to the bowl 😂 or else it will splash back when it hits the back of the seat. What a wonderful procedure and I had great results as a matter of fact the results were beyond my expectations😱🐴💦💦 it was the day surgery went home with a catheter and I got to pull it out myself the next day with the doctor on a video chat🤩😖😀 had it done in New York City at Lexington hospital by Dr. yanke ,wow what a name for a urologist doctor and it is pronounced Dr. Yank 😀😀😀no I did not make it up Google him up great guy great doctor with a wonderful sense of humor.he has an office in Manhattan New York and also one in Port Jefferson Long Island.

Have a great day everyone enjoy today like it’s your last you could get hit by a bus tomorrow and all of this worrying would be worthless🙏😂🇺🇸👍🍷🍺🎼🏌️‍♂️🫶👌🙏

[FormulaRob in reply to Dannyboy48]

I need to steal some of your positive LOL ! My father has a Gleason score 9. Unsure if any spread yet but with 226 PSA There’s a chance obviously . Or maybe the high PSA is because of the large Tumour in his prostate .. hopefully that’s the case rather than spread.

But they’re saying if any spread they only give my otherwise super healthy 65 year old father 5 years to live !! After hearing this a few days ago I haven’t quite figured out how to live a normal life with the nightmare of losing one my parents on my mind. My parents are everything to me. I’m super worried and just hoping that he can far exceed this 5 year BS.

We’re you given a life expectancy ?

[Dannyboy48 in reply to FormulaRob]

laugh out loud yes. When I was diagnosed and I looked on the web from all of these medical knowledgeable ( so-called knowledgeable) websites I read once it was metastasized in the bone the normal life expectancy was three years. thankfully I have to say that I have almost double that. If I really think about it it was probably in my bones three or four years prior because of the pain I was having in the pelvis. So if that’s the case I’m already probably nine or 10 years with metastatic Prostate cancer. Thanks for jogging my brain I didn’t think of it that way till now. The stuff doesn’t grow overnight so what I read was three years is probably now about 10 years.

Only the Lord knows what your life expectancy is, many of my friends who I served with in the military are dead now. Many of my friends who I worked with over the years are dead now. That’s why I live every day to the fullest even The days when I don’t feel super. No one really knows so my advice is don’t worry about it, deal with the medication’s and try to enjoy life to the fullest. I asked my oncologist six years ago how long did he think I had to live because I was very scared. He told me look both ways when crossing the street because there is a better chance of you getting hit by a bus than worrying about when you were going to die from prostate cancer. I did ask him if I had an aggressive type of prostate cancer and he said yes that’s why It is in your Bone already. He said don’t worry about it , there are so many new medicines coming down the line that there is no need to worry.

Don’t read too much, and then enjoy every day, each and every one of us from the day we were born knows that someday we shall leave this earth. Nobody knows the day so please enjoy each day

🎼 don’t worry, be happy👌

[CAMPSOUPS in reply to Dannyboy48]

It took a couple years after my dx but I had the same light bulb moment that really I was probably walking (dead man walking) around this earth with PC running thru me for a few years before my diagnosis so actually my survival rate can be upped lol.

[FormulaRob in reply to Dannyboy48]

Thank you Dannyboy I needed this. It’s amazing to hear how you’ve already doubled it !! And like you said likely more than just doubled it when you really think about it. No one is just a statistic but boy does the initial news hit like a ton of bricks.

I was wondering how the hell could I love day to day being happy when I feel like there is an expiration date over my fathers head but you helped me realize that it doesn’t have to be that way. No one knows what tomorrow brings . I love you positive vibes and optimism and the success you’re having !

You’re awesome dude !

[Dannyboy48 in reply to FormulaRob]

good morning, happy to hear you are looking at this PC from a different view.👍and yes we all have an expiration date 😂😂😂but none of us know when .

Headed out to church in a little while and looking forward to football and happy hour this evening 🍷,hope I don’t get hit by a buss or have a heart attack before happy hour 😂👌👍

[anony2020 in reply to Dannyboy48]

Great post. My Urologist also told me to be more concerned with my heart than PC, even though I do not have a heart problem!😊

[Teacherdude72 in reply to FormulaRob]

Diagnosed in 2015 Gleason 9 (5+4), aggressive, common pca. Now into the start of my 8th year on Nubeqa and Lupron. Oligometastatic treated radiation. Psa presently undetectable at <0.02. My radiation oncologist stated clearly I would not die of prostate cancer but with prostate cancer. No end date suggested except to say a long life. Now just 2 months away from 75 my PC says I will beat my grandfather's 92. B+ is my blood type and attitude.

[FormulaRob in reply to Teacherdude72]

Thanks Teacherdude that is fantastic to hear. It certainly helps to have such a confident team of doctors around you as well. I hope m,y father gets the same success as you despite his PSA being in the 200s

[Kaliber in reply to Dannyboy48]

lol

❤️❤️❤️

[Tall_Allen]

The non-FDA-approved therapy you chose for your prostate cancer, focal laser ablation, often doesn't .cure prostate cancer. One of those long (10-year) follow-up studies you dislike, showed it did not cure the cancer in 41% of the low/intermediate-risk men who tried it.

auajournals.org/doi/pdf/10....

This compares to about 5% with SBRT with a similar side effect profile.

The reason that it takes so long to prove that a treatment is effective for PCa is that it is usually so slow-progressing at first. It progresses faster later. That's why therapies are often proved first in men with advanced PCa. But there are hundreds of clinical trials (run by Faucis and other great doctors) you can join, including some for earlier use of Pluvicto.

[MarkBC]

While it may be frustrating for those of us desperate for more treatments, there are good, solid reasons why standard procedures are followed in scientific research. You should read about the 1950's "wonder drug" thalidomide that was marketed publicly in Europe and Canada before it had been thoroughly studied. (Fortunately for the USA, the FDA did not approve its use) Horrible human suffering was caused by inadequate research. I, for one, want to trust that proper research is done before new drugs are certified for use by the general public.

[maley2711]

amen here..... on the other hand, I guess some (here? ) would argue that no agency should be allowed to dictate what they are allowed to imbibe or what treatments they are allowed to receive? As long as they don't expect an insurer or government entity to cover the cost?

I am befuddled as to the demonization of Fauci?

[addicted2cycling]

traxcavator WROTE --- " .... I am convinced that any curative treatment will most likely involve hitting the tumor directly .... "

April 2015 immediate castration upon diagnosis then my right half Gleason 10 was completely cryo'd followed up with a non-FDA approved Immunotherapy in-situ injection 7 months later. Went out at 3:33AM this morning Temperature @ 62 ℉, Wind Speed @ 16.2 mi/h and some rain for a 11.11 mile bicycle ride. Just *Stayin' Alive* the best I can

youtube.com/watch?v=lZ3GoHw...(Not working as expected?)

Dannyboy48 wrote --- " .... only the Lord knows what your life expectancy is .... "

NOT a believer in *the Lord or of something after death* and doing quite well with being prepared to end it on my terms at my time of choice - damn predictions and living life to the max.

[Dannyboy48 in reply to addicted2cycling]

happy that you are living life to the fullest that is so important. Don’t have time to post too much more I’m headed off to church and I will pray for you as I do for everyone on this PC page🙏🙏🙏

[traxcavator]

I was very aware beforehand that laser ablation didn't have a great chance of curing my cancer. However, it bought me a year to look for something better. If I can buy a year of genuine health at a time, I'll take it. Other than minor plumbing issues, I'm as healthy as before the treatment.

I also am very, very aware of what others diagnosed around the same time have gone through after saying "Yes Doctor". At this time I'm substantially better off than they are, and I still have all of the 'Harumpf, standard of care' options open. Reading here there are more than enough other examples of where I don't want to go.

It baffles me that substantially all trials are for MCRPC, when it seems obvious that something that works after SOC will likely work much better as an early treatment. AMG-509 would seem a likely candidate. The Orca trial in Ontario also sounds like a promising pre-MCRPC treatment.

Like many of us, I was around for the thalidomide thing, and have known people with abnormalities as a result. I see a substantial difference in risks between a drug that is associated with birth defects, and treatments or possible cures for a fatal disease. (An interesting side point is that the same FDA has approved thalidomide for cancer treatment.)

Danny Boy, Thank you for your prayers. My prayer book has been Pubmed. Hopefully our prayers will be answered one way or the other.

John

[MateoBeach]

choosing a less effective treatment has provided your cancer a year of progression, not a year of health. That is an unfortunate delusion. The window for possibly curative treatments is closing or closed.

Would suggest a careful assessment of your current situation via scans including a PSMA PET scan and multi parametric MRI of Prostate. This could possibly demonstrate that you could still be potentially curable by aggressive salvage radiation treatment (IGRT) to prostate, prostate bed and pelvic lymph node fields. And that combined with short term ADT up to 24 months. Or you can just keep ranting, and unfortunately we know where that will lead. Meant to encourage best possible outcome for you, not to criticize.