Searching for Treatment Feedback / Supplements

NewPCA_GatheringInfo

Hello I am age 51 (in great shape aside from this) recently diagnosed PCA and biopsy showed combination of 3+4 and 4+3 Gleason so definitely intermediate risk. PET scan on 4/19/24 showed cancer is on left side of prostate only has not spread. No symptons aside from PSA level 4.3 and get up pee 1 or twice at night. I am still trying to learn the terminology of everything

PROSTATE VOLUME:
Prostate measures: 4.3 cm TV x 3.4 cm AP x 4.3 cm CC, volume 31 cc.

Prostate volume calculated in DynaCAD Prostate Boundary segmentation: 32 cc

I have received a consults at Johns Hopkins & Potomoc Urology & Jacksonville Mayo Clinic

I havent decided yet at on treatment. My thought process is want to try balance risk with quality of life

1. Surgery - I am still considering removal but side effects/quality life worry me

2. Brachy Seed Therapy or Cyber Knife - Long term radiation effects worry plus aside from hormone therapy doesnt looks only plan B option

3. HIFU - I am leaning towards this even those possible higher rate of re-occurence and if doesnt work go Radiation or Removal as Plan B

4. TULSA Pro - Based on my MRI Mayo sent not a good candidate due to 1) Possibly Multi focal and 2) Bladder calficiation. However, I am having them re-review as PET scan done on Friday seems to refute this

I am learning each Doctor has their own bias on the treatment so I am just trying to get feedback from other people on their experiences and if there are even more options to consider.

Also, are there any type supplements that help reduce spread or ones should take

I always to try eat healthy and have reduced my alcohol intake to only a few drinks ocassonly mostly due it's much harder to deal with when wake up hung over depressed on having cancer.

I have a 15 year old son and I am very good terms with his mother in Co-parenting. I havent told them yet as want to decide treatment course first

Thank you for your feedback.

Steve1961

have you sent out your biopsy for decifer testing ..this is a must if there’s any cribiform involved we are dinding out that cribiform is radiation resistant i am living proof there was Cribiform involved with me and I chose radiation and it didn’t work. I am three weeks out of having salvage prostrate surgery.

Steve1961

personally at your young age and at my young age I was 57. I wish to God I took it out. I personally know about six men that have had surgery. All of them are fine. None of them have any incontinence they can still get erection and they are cancer free 678 years later, don’t listen to horror stories. You might hear a lot of them on here. The gold standard for prostate cancer that is confined to the prostate is surgery look it up the; you always have radiation as Plan B if it happened to come back on my case since I already did radiation if it comes back now I’m screwed. I can’t do radiation a second time,… just my opinion.

On_A_Journey

Hello @NewPCA_GatheringInfo, welcome aboard.

I was only 52 when I had mine out. I first started getting my PSA tested when I turned 50, and it was in the 5's. It took me three biopsies over two years before I was officially diagnosed in Feb 2015 and I had my surgery in June that year after my PSA spiked to 10.6 (it was still only in the 7's when I was diagnosed).

I would suggest for now to make sure that you get 3-monthly PSA blood tests and follow-up appointments (also known as active surveillance) to see if there is a trend emerging with your readings. If the readings only go up slowly over time, you might just get away with not having to consider any treatment at all for a few years yet. This will give you plenty of time to carry out some extensive research and enable you to consider your options. Time will tell.

I did end up with incontinence issues eventually, mainly thanks to the follow-up 'salvage' radiation that I needed six months after my surgery, but I am dry now thanks to a procedure that I underwent last year.

I was already suffering from ED before my surgery but to be honest things weren't any worse after my recovery from surgery.

jc5549

Hey there sorry you’ re dealing with all this at age 51(or any age for that matter).

I was diagnosed at 58 and had prostate out three months ago at age 59. I was intermediate risk with 3+4 and no 4+3.

your concerns are well received, there is no intervention for this disease that comes without life-changing after effects. I am still leaking urine and do not have erections, however, my expectation is I will recover function, I just have to be patient because recovery can take a year or more. I am tremendously improved today compared to where I was when my catheter was removed one week after surgery.
Whatever you decide, I think it’s really important to consider your specific characteristics of your disease and life expectancy after treatment, things that come to mind from what you have said in your initial message are the following: You are only 51 years of age, you already have 4+3 in some of your biopsy cores, and you are a healthy man.
No matter what you choose for an intervention. It’s going to have to successfully treat you for the next 25 to 30 years of life. Intervention like focal therapy may seem desirable for the sake of side effects, however, a healthy man of 51 years with intermediate risk disease will quite likely have a recurrence and require follow on treatment. Radiation or Removal after failed HIFU is not the same as one or the other as primary therapy. You should expect to lose at least one of your neurovascular bundles (side of disease) If not both with follow up therapy after focal. Excellent nerve sparing surgery is what it’s all about to minimize side effects, same goes for very experienced radiation oncologist should you choose that route.
I encourage you to use the MSK post treatment calculator. This will give you an idea of expected long-term PSA cure when you put in your numbers overtime after surgery.
For me, the MSK calculator (nomogram site below)was very sobering, my 10 year expected PSA free cure is only 58% after surgery. This is why I chose surgery first, I chose my intervention based upon how many years I expect to live after treatment and what would be the best follow up adjuvant therapy should I have a recurrence.
Good luck to you, my friend, I hope this makes sense and helps, bottom line, this disease sucks and there just is no free lunch.

jc

https://www.mskcc.org/nomograms/prostate

PS: I do not believe there are any supplements that decrease your risk of recurrence. You are doing all the right things by tightening up your current lifestyle.

Josephg

My recommendation to you is to find a Medical Oncologist who specializes in prostate cancer (PCa), and let that person be the leader of your medical team. A Medical Oncologist has no predisposition toward surgery, radiation, or other therapies, and can give you a non-partisan opinion on what treatment would best apply to your specific case. Further, a Medical Oncologist is an expert in hormonal treatments, should those become part of your treatment package in the future.

I have had surgery, IMRT, SBRT, and hormonal therapies, and in each case, my Medical Oncologist made the recommendation, and with my concurrence, set me up with the appropriate very experienced professional to administer each of these therapies. I value having one medical professional (Medical Oncologist), knowing me and my situation extremely well, being by my side for my entire PCa journey, 13 years and continuing.

Old Salt

I second the recommendation from Josephg. You can also go to a center of (prostate cancer) excellence. There you will be evaluated by a team of specialists who can advise you on the best treatment for you. Typically, they have no particular axe to grind.

NewPCA_GatheringInfo

I appreciate everyone's feedback! What is considered a center of prostate cancer excellence? Isnt Johns Hopkins a leader? I have another consult in a few weeks with Dr. Pavlovich who was referred to me.

Old Salt

https://profiles.hopkinsmedicine.org/provider/Christian+Pavlovich/2703813

Certainly a very impressive resume, but he is a urologist with special expertise in prostate SURGERY. It would be great if you could get another opinion from a radiation expert. I searched the Johns Hopkins site and found Dr Patel who specializes in urologic oncology. Perhaps you can make an appointment with him on the same day.

https://profiles.hopkinsmedicine.org/provider/Sunil+Hemant+Patel/2700315

Alternatively, you can contact Dr Sean Collins at Georgetown U Medical Center. He is one of the best known in the US prostate radiology field with at least 1000 SBRT procedures under his belt and more than 100 (refereed) papers on the subject.

NewPCA_GatheringInfo

https://csn.cancer.org/discussion/comment/1714868#Comment_1714868

Thank you for the information. As I mentioned am still weighing if the side effects from surgery out and weighing possible sideffects / quality life of Radiation long term that being said whichever treatment I want to make sure have the best Dr and will set up a consult with Dr Collins

Another option considering still is HIfU even though there is not a lot of long term data Do you know of any Drs that specialize in HIFU? Also looking to here from other people that have had that treatment

swl1956

https://csn.cancer.org/discussion/comment/1714872#Comment_1714872

HIFU being just one of several ablation techniques are typically used for Focal therapy. Often used for salvage treatments, but can be used for initial treatments as well if the cancer has not metastasized. Focal therapy can be a good alternative (lesser side effects) to the standard of care RP or RT, but only on select patients having low to intermediate grade cancers and a lesion that is in a accessible position and other factors. HIFU and Cryotherapy are available at most centers of excellence. I'm scheduled to have IRE nanoknife in a few weeks at Fox Chase Cancer Center. Because Focal therapy only treats the index lesions there is a higher chance of recurrence because they are not ablating the entire gland. I choose IRE which is a non thermal process which supposedly leaves less damage to surrounding structures. It's not for everyone, but because I've been told I am a good candidate, I thought I'd give it a go. If it fails I still have the options of repeat IRE or RP, RT. Anyhow, I'm not promoting it, but it may be another option to think about if you're a good candidate? I've found like others have mentioned having a multi disciplined team is a plus. Ultimately though the decision is one we have to make and god knows it isn't an easy one.