What to expect with no treatment

Old Salt

There are a number of misconceptions in this thread.

Six months of ADT is tolerable and it's extremely likely you will get to be your old self again afterwards. Six months may seem like a long time, but with appropriate exercise and a positive attitude (I will get better) shouldn't be a big problem.

You wrote:

Family begged me to “do something” so met with oncologist who said five radiation treatments and six months of A D T. This seemed tolerable (I refused 18 months ADT and 36 treatments) then I found out most people who do A D T get stuck on on it for life. 

Wrong! Lifelong ADT is only for patients with metastatic prostate cancer. Moreover, five radiation treatment (presumably SBRT) combined with ADT may well eradicate the cancer.

You seem to be unaware that not treating your cancer may lead to bigger problems down the road. How long do you want to be around?

reluctant_member

https://csn.cancer.org/discussion/comment/1714853#Comment_1714853

| How long do you want to be around |

Only as long as I have quality of life. I completed my "bucket list" a few weeks ago when I saw the total solar eclipse. I watched both of my parents live in pain for years, spending their last couple of years in the hospital more than they were out of it. Not interested in that path.

I look at it like this: I didn't exist for billions of years before I was born and it's not upsetting to me, and I won't exist for billions of years after I die so I can only assume that won't be upsetting either. Family and friends are pressuring me to get treated so I may as well give it a shot but I'm terrified of getting caught in the medical industrial complex where I'll get endless treatments each one causing side effects that need more treatments that cause more side effects until they've sucked all my $$ away.

reluctant_member

Thanks. If you don't mind me asking a personal question, do you feel you have quality to your life or are you just "hanging on"? My image of cancer is my father spending days on end in the hospital, then coming home and sleeping then pretty much going back to the hospital again for treatments that didn't accomplish anything.

dgrinnan

Again, do what is best for you. As long as treatment is not having a negative impact you always have the option to walk away once the reward is not worth the cost.

Clevelandguy

https://csn.cancer.org/discussion/comment/1714849#Comment_1714849

Hi,

If I were you I would find a different support group, neutered farm animal, smell like piss, what a sad sort for a support group. I had my Prostate out 10 yrs. ago and I let nothing slow me down. Don’t feel like a farm animal or a piss pot. I feel the radiation and ADT will extend your life for years but if that’s not what you want live it up now and die early. Your choice…….

Dave3+4

Clevelandguy

https://csn.cancer.org/discussion/comment/1714857#Comment_1714857

Hi,

If you do nothing ,let your cancer spread to other tissue/organs you will eventually end up like your father. If you do some kind of treatment now, radiation/surgery you should survive for many more years. Most people come to this forum looking for info on how to beat this cancer and live, why did you come here?
Dave 3+4

reluctant_member

| Most people come to this forum looking for info on how to beat this cancer and live, why did you come here? |

I came to find out if doctors are being truthful or not, if there ARE people who are actually cured (several doctors told me the CURE rate, not the REMISSION rate but the CURE rate) is 90% or if it's just a battle that can't really be won.

Clevelandguy

Great doctors+great facilities =great results, find the best you can afford. Prostate cancer is one of the best cancers you can get. Survival rates are in the 80-90% range with treatment. Something is gonna get me in the end, don’t know what it is? Know body knows what except the big guy upstairs. No battle can be won if you don’t fight. Fight the good fight my friend, be known as a fighter not a loser. Don’t have anything else to tell you, the rest is up to you.

Dave 3+4

Old Salt

https://csn.cancer.org/discussion/comment/1714857#Comment_1714857

No, I don't mind at all.

I have written about my situation before, but here it is in a 'nutshell':

Eleven years ago, cancer was found in my prostate after a rise in PSA (to 12 ng/mL) and a follow-up biopsy. Several cancerous sites were identified, mostly Gleason 9, but apparently organ confined. The urologist (bless his heart) recommended starting 'triplet' therapy (IMRT + brachy + ADT). I believe this was standard operating procedure (SOP) at the time. I had a hard time connecting to the radiologist who was going to do the IMRT; apparently he was super busy. I looked around some more and heard about SBRT (Stereotactic Body Radiation Therapy). This method (relatively 'new' at the time) was in use at Georgetown U Medical Center under the supervision of Dr Sean Collins. After some back and forth Dr Collins proposed to treat me as follows: Three SBRT sessions on CyberKnife equipment, followed by 25 IMRT sessions and 18 months of ADT. This was not SOP. As a former science lab rat, I liked this experimental approach and decided to enroll in his ongoing clinical study. Of course, it was tiresome and the ADT did affect me for a time. I exercised and tried to accentuate the positive. That was roughly ten years ago. I see Dr Collins once a year nowadays because I am still in his study and get to fill out several forms regarding my experiences. What is most important is that my PSA has stayed acceptably low (now 1 ng/ml) and that I have had no serious long-term side effects.

Most importantly, I do have quality in my life. I can still engage in the activities (sports and travel) that I used to enjoy prior to all of this; perhaps at a lower intensity because the aging process didn't stand still (I am 83 now).

swl1956

Reluctant Member,

I too have had thoughts of letting nature take it's course. One doctor told me even if I do nothing, I'm likely to live another ten years. What the quality of life would be is another question. We could just get the gun and end the misery!😜 (just kidding!) Anyhow, like you, I was diagnosed with 4+3 T2 at 67 and you at 64 we likely have quite a few years ahead of us. I've put off the decision for six months but have ultimately decided to endure some treatment. I am fortunate to be eligible for a focal treatment which has far less side effects than the standard of care RP or RT but with a slightly higher risk of recurrence. I figure if I just let it go, I'd likely become a burden to my family anyhow and maybe suffer more so than if I treat. So, I chose the minimalist approach first and I'll still have other options going forward. The SBRT and six months of ADT does seem tolerable and may cure you. Many men like us have been cured and for those not cured can still have a quality of life with additional treatments. Even between treating your Pca you could still travel and enjoy life. Pca has opened my eyes to my mortality. It'll be a worry either way. At worst we're kicking the can down the road and still be able to refuse treatment at some point. Sometimes I think that humans before all of our technology just died of unknown causes without all the worry of choices we now have. Hell, I get stressed out just going to the grocery store! 😁

centralPA

Five rounds of SBRT should be no big deal. The six months of ADT? I was in the military for 30 years, and repeatedly had to deploy for up to a year at a time. Think of your ADT as a six month deployment. Splurge on a few things, and it will be over in a blink.

lighterwood67

Well, I had a RALP in March 2018 (67 years old then, now 73). I always kept "Quality of Life" in front of me. My wife and I were camping at the time. I did not allow the surgery to stop this. As far as side effects, yes, I had urinary incontinence that started to slow down at around the 4th month post op and completely dry at the 6th month. Prior to the surgery did a many kegels. In my case, erection dysfunction was not an issue. The issue there was my wife, she is awfully fast, hard to catch. The surgeon had me taking Viagra around a month before the surgery. He said look at it as fertilizing. My last PSA was .03ng/ml (might as well say undetectable). There will always be decisions to be made. However, when it comes to a decision about prostate cancer or any cancer really. No decision is a decision in itself. Good luck on your journey.

Steve1961

just wanna say one more thing like the previous member stated stage four can live five 1015 years prostrate cancer is not sure average cancer like lung cancer bone cancer cancer pancreatic cancer …. the ones that actually die from it caught it way too late and it seemed like you caught it early so it’s up to you. You could easily with treatment live 10 1520 years, but if it’s untreated, well you know what’s gonna happen?

Steve1961

https://csn.cancer.org/discussion/comment/1714861#Comment_1714861

you are always in remiision with cancer because there is NO CURE …you can only beat it ..it your PSA is below 0.1 that means you have no evidence of cancer and if it stays there lets say for 12 or 15 years you can say you beat cancer i guess you can say you are cured ..but there is no cure …..

Steve1961

What type of cancer did you dad have ..prostate i watched my dad die miserably from lung cancer but thats not prostate cancer at this video on YouTube this Dr. Schultz has posted about 15 very informative videos. Maybe this will change your mind but after this, I’m done lead a horse to water but you can’t make them for it. Good luck but take a look at this video.

https://youtu.be/eTN2vXpSHd8?si=e4guspS67pbVqibw

kmaly1

This is your decision, and highly individualized. My GP tried to talk me out of my RP because a friend of his (50 y.o.) had an unfavorable outcome with incontinence and impotence 6 months out. I am 65 and now have different goals than I did when I was 50. I am looking at quantity - I am an officer in a non-profit animal rescue and walk among neutered farm animals and dogs who seem quite happy with life, and I need to stick around for them. I was led to believe that if there was residual cancerous cells, RP to radiation backup was better than radiation to RP. I just want this rebellious organ out of my body. We had fun together, but I cannot tolerate this.

eonore

The five radiation treatments proposed are really no big deal. As to the ADT, do the six months, and if your testosterone does not return get testosterone supplements. Easy, peasey, and you’re probably cured with probably no ill effects. Better than dying of prostate cancer while it spreads through your body.

Eric

Steve1961

https://youtu.be/eTN2vXpSHd8?si=F10bR-ofdPJSzeql

dgrinnan

Good video. The problem when you look at survival rates and even this video is it would help if they qualify what they are talking about. They could be giving someone bad information and false hope. Was this doctor speaking specifically about prostate cancer that is confined to the prostate and has not spread any? If so, they should say that up front. My prostate cancer has spread to my bones and lympnode. Does that optimistic outlook apply to me if I respond well to treatment? It has been tough to get a clear answer. My doctor is very frank about things. For the same reason this doctor talked about advances in medicine, my doctor won't speculate on my mortality. When I quoted to him the statics this video calls out, he flat out told me that was not correct.

jc5549

https://csn.cancer.org/discussion/comment/1714849#Comment_1714849

Just a thought, you are under the impression you will be on ADT, “for life.” I think that is bad information. You should expect to be on for 6-18 mos and then follow your PSA values.
What would members of this site gain out of being dishonest about the effect of ADT or recovery after ADT?
You can always refuse to go back on ADT in the future. Hope you will reconsider treating a disease that should allow you to be around for 10-15 years or more, plenty of time to enjoy retirement.