Just getting started

[OldVTGuy]

Started my journey with a PSA of 13.7 in August of 2022.

October brought the discovery of a lesion on the MRI scan.

Later came the guided Biopsy with 12/15 cores positive with Stage 9 PC.

Lastly, we had a PSMA PET scan which showed no spread outside the prostate.

Ended up at MRiT3N0 M0 staging.

The location of the lesion makes RALP complicated. I am 99% going for radiation therapy just have not pulled the trigger yet.

RO is suggesting 40 sessions of IMRT/IGRT and 2 years of ADT. Not advisable to use a spacer due to the location of the extracapsular extension of the lesion. Lymph nodes to be treated. Will use fiducials with the possibility of a Brachy boost.

As explained to me he is being aggressive so we get this thing eliminated.

Any thoughts appreciated. About to start my journey.

[Derf4223]

I'm in pretty much the same boat and timing as you. I had RT in August and am now about 5 months on Lupron+Abiraterone+Prednisone with undetectable PSA. Good luck.

[Andy1569]

We are similar just check my profile.

Watch the attached video. This Doc is one of the good guys.

youtube.com/watch?v=81iAzYV...(Not working as expected?)

Don't ever be afraid to ask this group ANY question that you might have.

Fight On!

Andy

[OldVTGuy in reply to Andy1569]

Yeah I love this guy - learned a ton from watching him and am a total PSMA-PET fan. In fact, my insurance would not pay for it but I did it anyway.

One question I have now is why would a doctor choose IBRT when he has access to SBRT? I got the impression that he felt with an aggressive cancer the longer term but lower dose approach had a higher chance of success but was not sure. Not looking forward to 40 sessions when I could have had 5.

[Pop1959 in reply to Andy1569]

Hi Andy1569, lol nice to meet another Gleason 10, we are thin on the ground. Had my radiation Jan through Feb. One year into 2 years of ADT psa 0.1 and going strong. Best of luck.

[Jancapper]

You and I have very similar data. My PSA was 14.5 upon diagnosis. You state that you have stage 9 cancer, I assume you mean Gleason score of 9. This is my score too. I have only 3 positive cores however. My RO started me on 3 months of ADT to shrink and weaken the tumor before receiving High dose brachytherapy boost. I had my surgery yesterday. 18 needles were inserted into my prostate and 15 Gy were delivered all while I was under full body anesthesia. Next week I will start my 25 sessions of daily EBRT and then continue on my ADT for two years.

Best Regards.

[Trying-Times in reply to Jancapper]

I will be starting hormones soon and then on to HDR-BT. Would you mind telling me how goes it so far? I had brachytherapy in 2012 for prostate cancer it is now in the seminal vesicles. I hope for the best for you and all others who are fighting this beast.

[Jancapper in reply to Trying-Times]

My therapy treatment so far has been well tolerated and I have responded nicely so far. It did take a fair amount of time to work through all of the different procedures before deciding on my treatment plan. I chose ADT + HDBT + EBRT as my treatment. I received my first shot of Lupron (6 month) on September 6. The plan was to receive 3 months of ADT to shrink and weaken the tumor prior to my HDBT irradiation session. Yesterday, I had my HDBT surgery. It was more than I anticipated but I am happy to be alive and ambulatory. Urinating after HDBT is incredibly painful so just shout out before you pee as a distraction. Today, I am suffering from diarrhea but I have been told that this is uncommon and should subside soon. Next week I will start my EBRT. So far, so good. I have had a mix bag of fortunes. Gleason 9 cancer at 59 but no metastasis or lymphadenopathy.

[Trying-Times in reply to Jancapper]

Thanks for the response and pee warning. If you wouldn’t mind what went into working through your treatment plan and how much time between diagnoses and start of treatment. I haven’t met with the RO who will do my surgery so I don’t know his plan yet. He is the same one who did my original Brachytherapy in 2012 and my appointment isn’t until January 3rd. Since hormone therapy is already a given I’m wondering should I ask about starting the therapy before January 3rd. My latest cancer was found on November 11th I had kidney cancer in 2007.

[Jancapper in reply to Trying-Times]

Suspected pc back on 3/14/22 when first screening PSA was 11.2. Confirmed via biopsy on 5/11/22 with 3/12 cores positive. Bone scan and MRI done. Both negative for metastasis, seminal vesicle invasion or lymphadenopathy. Candidate for definitive treatment, either surgery or radiation. Several more scans ordered, another MRI and PSMA. Once again, both negative for metastasis. Tumor was judged to be in a good location for radiation with brachytherapy Boost. Received first Lupron shot on September 6th and my PSA has dropped from 14.5 down to 0.39 current, T is 15. My procedure was slightly unorthodox In that I received my HDBT first, having received 15 Gy yesterday. After a week for recovery, I will finish out my radiation therapy with 25 additional days of radiation. That should conclude my treatment plan and I hope that my PSA continues dropping and the stays low. If it creeps back up, either Cryoablation or HIFU will be considered at that time.

Best of luck to you.

[Trying-Times in reply to Jancapper]

Thank you for sharing this information with me it was very helpful.

All the best to you.

[OldVTGuy in reply to Jancapper]

Sounds like we are on the same plan you are just 6 months ahead of me or so. I look forward to checking in on your progress. Undecided at this point if I get the Boost.

[OldVTGuy]

Yes Gleason 9 - 4+5. This is very helpful for me thanks for filling me in - will let you know how I progress. Good luck!

[Tall_Allen]

Consider the following clinical trial:

clinicaltrials.gov/ct2/show...

[OldVTGuy in reply to Tall_Allen]

Thanks - My RO has told me I am a good candidate for this.

[Boywonder56]

Try erleada.....

[RMontana]

OldVTGuy, this is my 'if I could'da would'da should'da' list that I published a while back. Think and study going with radiation first...if you have any need for follow on treatment the side effects are a lot worst than RP first...you have a very complex case...if it were me thinking. I had a RP and my surgeon was surprised at what he saw; needed sRT (salvage radiation)...could not have done that in reverse. Will send 3 links, first my primal rant on what I would do differently then a podcast that looks at pros and cons of RP vs RT along with a great MAP showing what tools we have for our use and when to use them...hope everything turns our well no matter what...TNX

healthunlocked.com/active-s...

Here is a good podcast as well with a MAP of what we can use for tools...

healthunlocked.com/active-s...

[OldVTGuy in reply to RMontana]

Thanks for taking the time with the links. Very informative. I have been noodling over a second opinion because although I think my RO is good I have nothing to compare him to and I am in a "rush" to just get this thing started. Now I will do that.

[RMontana in reply to OldVTGuy]

heavens. If you do nothing else get a second, third, fourth, fifth as many opinions as you think you can stand and pay for. I worked in the Middle East for a good portion of my life. Many times you travel through the desert and I developed what I called ‘the Bedouin Rule.’ You see Bedouins are extremely friendly and they will tell you directions even when they have absolutely no idea where that location is. What I found was I had to keep asking until three people told me the same thing. Then I would follow that path I got lost less often

Sometimes I think healthcare is the same. We’re wondering through a desert and we’re asking people for opinions who really may have as much knowledge of its ultimate outcome as that Bedouin than did about where I was going. So I would keep asking doctors about what should be done until I get three to tell me the same thing. Just a thought.

[RMontana]

Here is a provocative podcast...RP vs RT...a 'comparison.' First up is RP and its bracing...but the RT RO's come right back and explain why the results of the RP study were what they were...if I were going into treatment now I would want to play this thing about 10 times and listen very carefully...there are pros and cons to each treatment.

I had a RP and found open surgical entry worst conditions than anticipated. Not leading with RT I could follow up my surgery with salvage...dont know...its the toughest call any man has to make in his life...there are no absolute outcomes here...all we can do is be knowledgeable, weight the odds and make the call, then roll with the punches that may come...good luck...let us know what you decide and how its progressing...TNX

youtu.be/NvFdcamy0wY(Not working as expected?)

[cancerfox in reply to RMontana]

Well, that was confusing! It was like the CEO of Ford arguing with the CEO of General Motors about who makes the better vehicles. The problem is, none of us is a statistic, and it's impossible to predict individual outcomes based on statistical studies of aggregate groups of people. You might beat the odds, or the odds may beat you. Also quality of life should be considered and the odds of attaining or not attaining it after treatment. Like you said, "all we can do is be knowledgeable, weight the odds and make the call, then roll with the punches that may come." 🦊

[OldVTGuy in reply to RMontana]

This part of my decision was not hard. My urologist - who is a talented guy who has done 500+ RALPs showed me on the MRI why he would not recommend RALP - basically that the tumor sits right on the wall of the rectum and he could never remove it all without leaving a margin making radiation and hormones necessary anyway.

The next thing for me is do I have a good RO and is the hospital and team top notch? After doing my homework on that front I think the answer is yes. Treatment plan seems sound and within the current recommended Standard of Care given my condition.

Onward - Need to kill this thing off and get on with life.

[RMontana in reply to OldVTGuy]

I had the same situation but did not now it until I was operated on...but mine was with the bladder neck. My tumor encroached on the bladder neck and so as you said there was no removing margin or I would loose my bladder. But they found an extension that was not shown on the MRI and removed margin on that successfully. Then I had to do sRT as you said. The other thing not mentioned on the podcast was the removal and testing of Lymph nodes. When my surgeon saw the extra EPE and invasion he removed a total of 11 nodes; 3 is normal. That was helpful in that they were all negative on biopsy; gives me an extra margin of comfort knowing they had not been invaded. So for me surgery had advantages first, then sadly I had to do sRT after...followed by 21 total months of ADT...why? My post op Decipher score.

The other factor for me not mentioned in this discussion was that surgery allowed me to do a Decipher test on the bits and pieces removed...it came back a whopping 0.97 out of 1.00...was expecting a 0.50-0.60 per the visual GS...this meant I had a lethal tumor genome and had to be very aggressive...again another advantage of RP first...now if you dont have a Decipher and wanted one the cores taken form the Biopsy can be used and they store those for years. You may want to consider a genome test like Decipher to see what 'flavor' of tumor you have...GS does not tell you about the aggressiveness of the cell type but the pattern of growth, speed versus direction as I would call it...TNX

[OldVTGuy in reply to RMontana]

Definitely will do the decipher score on my retained biopsy samples. Probably as part of a clinical trial anyway.

[Derf4223 in reply to RMontana]

I have a strong family PCa history. They lived with increasingly poor QoL as they neared their nineties before succumbing to any of a variety of serious ailments that had accumulated. On the basis of that I decided a Decipher analysis was almost certain to yield info not at all likely to alter my SOC-based aggressive PCa treatment plan. I also am certain that God has gotten me through many potentially fatal scrapes thus far and am ready for whatever his plan for me is.

My PCa-succumbing family were tough people of faith and duty from the great WWII generation, they smoked and drank (in moderation) and ate what they ate. As they became elderly they quit smoking and cut back on drinking but did not make exercise a part of their daily lives. My choice is to make a high level of mixed exercise a daily habit, to eat a modified Vegan diet, take researched supplements and vitamins -- as much for the large QoL benefits as any potential help with PCa.

[Iambass]

The doctors will take care of the cancer. You take care of yourself- body, mind, spirit. Be well.

[Hidden]

Sounds like you are in good hands and they got a good plan. It's a hard path to walk but it leads to a healthy outcome. Wishing the best to you in your fight. Never lose hope or faith, there are people who need you.

[ctflatlander]

Welcome to the club no one wants to join. Where in Vt are you. I'm in Burke.

[MateoBeach]

Good plan.

[dadsdrdawn]

Just a note of positive thoughts. My dad was diagnosed 16 years ago with advanced prostate cancer. Prostate removed then. Did ADT for 15 years. Still going strong, golfing, traveling, living a full life, and now will be starting a new journey with a new treatment.

Here are my thoughts:

Stay active, strength train, get outside a lot, and enjoy every day.

Do yoga.

Don't define yourself as a cancer patient.

Travel.

Eat well, and take supplements.

Spend time with those you love.

And...these are things I support for everyone, every day!

Wishing you a lifetime of happiness, and stellar health.

[Teacherdude72]

I am in my 8th yr since diagnosis of G9, aggressive, prostate Cancer. Stage 2c. IGRT 25 sessions plus two HDR brachy.24 months Lupron.

Presently on Nubeqa & Lupron with <0.02 psa and nod T at all.

Exercise and living life fully.

My attitude is exactly like my blood type - B+

[cancerfox]

See my reply to RMontana. 🦊