I received biopsy confirmation of my advanced prostate cancer on Aug 29 and PET in September confirmed node positivity. I'm 43yo. No distant metastasis. I am working with a multidisciplinary team (UO, MO, and RO) with Kaiser in Anaheim, CA.
Based on an analysis of the PET, the team believed it was unlikely that a RP/Lymph disection would be able to completely remove the PC. This is partially due to a small bit in a pararectal lymph. Based on this they ruled on RP and started me on a triplet therapy of Lupron+Casodex and in the coming weeks Zytiga and then Radiation in a few months.
I visited City of Hope for a outside opinion and the Dr confirmed the triplet was the best non RP route, but I was encouraged to see more opinions on RP and to not be quick to rule it out. My case was also discussed at a socal regional tumor board due to my age and extent of my PC and my team told me that not everyone was in agreement on whether RP should be considered or not.
From what I gather, Dr's are of two opinions: 1.) Based on my age, be aggressive as possible and eliminate as much as the PC as possible via RP+ADT+RAD, or 2.) Based on my age, the additive side effects of RP+ADT+RAD may take quite a toll/ quality of life impact on someone who has "lots of years ahead".
Its my understanding that RP is typically done prior to RAD.. but the decisions and differing opinions are a little overwhelming. I am wondering if anyone has faced a similiar dilema and how they worked through it, how great are the additive impacts of RP+ADT+RAD, and whether adding RP really will give me any better chances of survival or not.
Any advice is appreciated.
Kent
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I don’t have an answer to your question (I did triplet therapy), but want to say I’m sorry you have been diagnosed at such a young age. As I’m sure you know, you’ll find lots of great information here, as well as support should you need it.
The radiotherapy doesn't worry me as much as the hormone treatment My husband had rp then his psa rose a few years later and here in UK the hospital doctor scared my husband and said he should have radiotherapy and ADT or he would die I said hold on the NHS doctor more or less said if you don't have radiotherapy we won't continue to scan you
He had a scan which didn't show anything
In your case at least you have a target
You could have radiotherapy on the prostate and where it has spread
Or you could have rp but you are young and may have issues due to that
My advice is don't have hormone treatment just have rp and rt or rt but if you have all rt you won't be able to have rp as you well know
Initial gleason was 7( 4+3) and PSA of 29. I will be following the triplet therapy per the NCCN guidelines. Just havent decided whether to add RP on top of that.
I don't understand why you imagine that RP is better. There is no age at which the side effects are better with RP, and survival is definitely no better. Planning RT after RP is particularly egregious. Do it right the first time.
Do it right the first time then is to stick with the triplet therapy only then? This is generally the thought process of my team, but they have been open with me that there are other Dr's that think surgery first may increase overall outcomes. Id happily rule out RP and its side effects but I want to ensure best odds for OS. Are you aware of anyone else being overly aggressive the first time at this stage? If I gain nothing from RP I will stay the course.
Nobody knows what any treatment will do for them until they have the treatment. No two cases are the same, and no two human anatomies are the same. Side effects can be minimized by ensuring your treatment providers are world class on whichever treatment you have.
There is no data to support that belief. There is an ongoing clinical trial of debulking with surgery instead of radiation, but so far, we only have data on radiation. I don't know that your characterization of debulking with RP as "overly aggressive" has any basis. IMO, radiation is more "aggressive" because it treats an area outside of the prostate. The clinical trials using RP for debulking are shown in the last paragraph.
I am truly sorry that you have to go through this at such a young age. I had a small amount of node involvement after RP ( they were very surprised when it showed up). I had 2 yrs of ADT and 18 months of Abiraterone with radiation done while on the ADT. PSA has been <.01 the whole time.
I cannot imagine having to live with the side effects at your tender age. Off ADT for six months still having hot flashes, no muscle tone. The radiation did cause urinary issues after those from the surgery were gone. I suspect that I will have them for the rest of my life (71 now. And of course sex is non-existent.
I would have gone the radiation route if my family was young and I was your age. Just my opinion. I wish you the wisdom to make the right choice for you and your family.
Thanks for the input. 1 month of ADT down and have not felt the impacts of ADT too much.. just a slight hot flash every once in awhile. We will see once they add Zytiga.
I was diagnosed at age 54, and very glad that I decided at the beginning to use every tool in the tool bag every step of the way. My cancer has been on the aggressive side but I've gotten mileage out of every treatment I've had. The worst side effects I've had were from ADT. My primary goal is to avoid ADT as long as possible.
Don't let any doctors put you in a box. Every case is unique. Mark Scholz in Marina del Rey would be a world class addition to your medical team.
From fellow patients you can obtain their experience and knowledge, but take their treatment advice with many grains of salt. Only you can determine your current and future priorities on quality and quantity of life.
I was diagnosed with an aggressive PCa variant in late 2019. My urologist performed a TURP as the first step of my treatment. My Oncologist asked me if I had any bleeding after the TURP and I replied that I had no post operative bleeding. She said “oh good, they got all of the cancer”. I then had ADT and radiation. The ADT lasted two years and my past previous PSA was 0.10 after three years post diagnosis. I have no idea what will happen next in my journey but I didn’t have a RP (and neither can I at this point), but I have done well with ADT and radiation so far. I’m much older than you are and and sympathize with what you are going through at such a young age. I wish you all the best on this journey.
I had 25 Proton radiations in 2009 but they also did, 20 3D conformal, I think the 3D was the problem since others that have done Proton don't have the side effects I have. I had 14 pretty good years but I've had two years of problems with bleeding and blocked urethers. They relocated my ureters and gave me 30 HBOT treatments and right now I'm pretty good. If I stay this way I'll be ecstatic. I would not do RP under any circumstances, I have several friends that did it and were miserable from day one and still are. I would avoid ADT if I could, they gave it to me because I was gleason 9, mr. happy hasn't been very happy since, Viagra is ok but at 79 it's not the most important thing in my life. Have you looked into robotic surgery, I have three friends that did that and one of them has has a recurrence but the other two seem fine.
43 years old?..... I'm twice as old (87), I am not a doctor, I can't even spell the abbreviation of the word doctor, I did play a doctor when I was around 5 or 6 year old, I do look handsome in a white coat.....with that background here is my advice to you.
Do not Panic, Don't hurry up the works cause you do have time. Never ever look back at any of your decisions and say "I shoulda , woulda or coulda"..... cause it's too latea....Does (did) anyone (male of course - that's my silliness butting in) in your family have Prostate Cancer (Pca) - think back?
My short story, at 66 my Urologist said I had a PSA over 4.0 and went in for a biopsy and sure enough I hit the Fucko (Pca lotto). So as a typical male who doesn't know shit, I said three things to the doctor 'TAKE IT OUT, TAKE IT OUT AND TAKE IT OUT' . Sink that M.F. mothership now, now and now. Guess what buckaroo? They took it out!!! So I was lucky and have been around for 21 years fighting those little fucking bastards. Taking meds and not in too bad of a shape but with my share of side effects. I do Not want you to think I'm giving you advice because you'll get loads of it here and everywhere. You will get tons of information regarding supplements (from swallowing's marbles to eating raw yellow canaries - only yellow ones) which I refuse to include in my daily two scoop chocolate chip ice cream dessert.
I just want to leave you with these thoughts.....You and you alone can only decide on how to treat your Pca...... so read, read and read, research, research and research and make sure you go to a top notch Cancer Center for treatment with top notch doctors and get second opinions (don't be shy). Do Not take shit from any doctor(s) because you are the paYtient...
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