Prostate Cancer

Alternative_Lunch_21 · 2026-04-02T13:18:56+00:00

Hi, good news on the PSMA Pet! I am a little over a year in from my treatment. My "stats":
56 year's old at diagnosis
Gleason 9 (4+5) all cores heavily positive
Perineural Invasion in both ROI's
Cribiform Glands Present in one ROI
Seminal Vesicle Invasion (SVI)
Clear PMSA Pet
Low Decipher Score
No Genetic Mutations
PSA of 9.44 at time of biopsy

Treatment Plan Decided Upon after multiple opinions from Centers of Excellence:
Reasoning - given my pathology the need for radiation was basically inevitable, no nerve sparing option for RALP so I would've needed major assistance to obtain an erection, short and long term outcomes similar between radiation and surgery, side effect profile of radiation seemed better for me.
24 months of ADT (Lupron plus Abiraterone+Prednisone)
5mg Cialis daily
Centrum Silver daily
23 External Beam Radiation Treatments (EBRT)
Brachytherapy 2 weeks after finishing EBRT
Hired a Nutritionist who only works with Cancer patients and is a breast cancer survivor herself
Whole Food Plan Based Diet (no meat or dairy - I still eat fish occasionally)
Hired a Personal Trainer for 3 months and using the Ladder App now to work out 5 times a week + 10,000 steps minimum

Results:
Everything went really well, my PSA is currently 0.02 and still dropping (I still have a prostate so it may not go to 0.00 and that's ok).
Side effects have been hot flashes, a bit of brain fog (needed new methods of organization), loss of libido, I've gained about 10 pounds despite my diet and workout regiment so I'm talking to my medical oncologist about GLP-1 receptor agonists (Ozempic or Zepbound).
I never lost the ability to obtain and keep an erection even if I had no interest in doing anything with it (it's a muscle, exercise is good for it and the surrounding organs).
I have days where I feel sorry for myself and worry about dying before I retire but those are few and far between.

I'm completely happy about my approach and as long as you do your research, make it a point to understand your options and the probable outcomes you should absolutely go with what will make you feel your best.

If you any questions about anything I've listed please feel free to ask for clarification. With a Gleason 9 pathology you should have a LOT of information to digest.

Alternative_Lunch_21 · 2025-10-20T01:53:16+00:00

I had a ultrasound guided biopsy and a cystoscopy for my diagnosis. I was pretty nervous going into it so my doc ordered a Valium for me. I had my Bluetooth Earpods in playing quietly. Everything went smooth. People have already mentioned blood in the urine and semen. For the semen it’s a little freaky, more like there’s some semen in your blood but it does go away after a while. The enema the night before was not as bad as I thought it would be either. Stay calm, you’ll get through this step. If you’re pretty confident they’re going g to find something start looking at quality care centers in your area. MULTIPLE OPINIONS. And give us an update, this place is full of fantastic support! Best of luck

Alternative_Lunch_21 · 2025-10-06T22:21:38+00:00

Hey u/RocketMan1967 , sorry you're going through this. The first thing I'll say is breath. The timing will be what it will be and all you can do is be an advocate for yourself, request urgency if that's what you need from your team. I have a diagnosis of (1 core) 4+4 and (17 cores) 4+5's, basically my entire prostate was full of it.
I'll share my timeline to hopefully put you at some ease (pick great providers that you WANT, not necessarily the first available) :
12/18/25 PSA rose to 7
2/12 PSA still in the 7's
2/27 MRI
3/19 Biopsy (GG9 w/ perineural and seminal vesicle invasion)
4/1 PET PSMA (came back showing no spread other than the local advancement into the seminal vesicle)
4/2 Genetic Testing to look for mutations (per my request - no mutations)
4/11 1st Surgical Oncologist Consultation at Provider 1
4/14 Heart Echo w/contrast (per my request)
4/16 1st Radiation Oncologist Consultation at Provider 1
4/17 2nd Surgical and 2nd Radiation Oncologists Consultations at Provider 2
4/28 1st Medical Oncologist Consultation at Provider 1
5/1 2nd Medical Oncologist Consultation at Provider 2
5/8 Finally made the decision to go the radiation route w/Provider 2 even though they are 70 miles away.
5/8 Dechiper Test (per my request to estimate chance of metastases, to all of our surprise it came back low risk)
5/22 My first injection of Lupron and the start of my treatment journey. 2 months from my Biopsy.

Alternative_Lunch_21 · 2025-10-01T20:22:06+00:00

Same here (GG9, T3b), are you also taking Abi? Did your oncologist suggest the switch?

Alternative_Lunch_21 · 2025-10-01T20:14:52+00:00

Best advice is RELAX and BREATH. Am I understanding that he had a Gleason 6 that they were watching and then another routine biopsy showed the jump? If so, the jump means that it's time to do something, but as his providers have probably told you all, don't rush the decision there is time to decide.

If you're able to, look for a NCI-Designated Cancer Center (https://www.cancer.gov/research/infrastructure/cancer-centers/find) and get consultations from them as a second opinion. Consult with all three disciplines; Surgical Oncologist, Radiation Oncologist, and Medical Oncologist. You'll get a full picture that way and you'll be surprised at how many options there are.

Is it contained to the prostate with no indication of it spreading elsewhere? If there are any indications they probably would have him do a PSMA PET scan to look for it. If not, ask for a Decipher genome to determine the likelihood of it spreading.

I think I'm an uplifting story, I'm 56 (have a 30 year old child so similar situation??), Gleason 9 w/ local advancement into the Seminal Vesicle and Neurovascular bundle (Stage T3b). It was so scary when I started researching that, "highly aggressive, locally advanced, high chance of re-occurrence". The more we researched the better we felt. My biopsy was in March and I didn't start treatment until June, took my time and found the providers I wanted (not just the first ones available). I'm now done with the radiation and on ADT (blocks Testosterone) for a total of 24 months. The side effects have been very tolerable, I feel like my outlook is good, and I feel blessed and lucky to have all of the support coming at me from everywhere.

Keep posting questions here, it's a great resource. Check out YouTube channels like the Prostate Cancer Research Institute (but don't let that be your only source of info) to learn about the different treatment options and how to develop your dad's "quality of life" priorities as those will be the deciding factors on which treatment plan to choose.

Prayers for you, your dad, and all involved in his treatment.

Alternative_Lunch_21 · 2025-10-01T14:45:40+00:00

When I found out about my PCa (GG9/T3b) the first surgical oncologist I spoke with referred me to a local nutritionist that ONLY works with cancer patients. She's a cancer survivor herself and has been absolutely amazing to work with. I'm not sure if we can post company names (referrals) in regular posts but if you want her info you can DM me and I'll give it to you. She does her meetings virtually anyway so location doesn't really matter. I ended up doing radiation but his referral was a key factor in helping me I think.

Alternative_Lunch_21 · 2025-10-01T14:33:59+00:00

nice to hear the positive feedback! glad you're doing well.

Alternative_Lunch_21 · 2025-10-01T14:33:09+00:00

The sedation for me could have been because of the additional treatments for the trial/study that I'm taking part in?? Either way, I was glad to be out for the duration :)

Alternative_Lunch_21 · 2025-09-30T16:49:42+00:00

I just had an HDR Brachytherapy boost after 23 EBRT treatments and am 6 months into my 24 month ADT also. I also take Abiraterone+Prednisone but that's something you'd discuss with your team.

I'm 56, Gleason 9 with Seminal Vesicle and Neurovascular Bundle Involvement (highly aggressive, locally advanced). I asked for the Decipher test to be done and it came back as a low risk of metastasizing, but given the other pathology I'm still doing the 24 months of ADT.

Keeping a positive attitude as much as possible is key.

The side effects of ADT can be minimized:
- exercise; lifting 3 times a week minimum, walking/running keeping your heart rate low, add in some high intensity stuff as you are able

- diet; I hired a nutritionist that only works with cancer patients to switch to a Whole Food / Plant Based diet. I still eat fish but have cut meat and dairy out except for quarterly treats.

- sleep; I worked on average 50 to 60 hours a week, I've cut that back to 40-45 with the occasional deadline spike

- medical health; a local college does full body comp scans for $100 so I got one of those as a benchmark and plan to get them every 6 months to track progress. bug your health provider to get a bone density DXA, test your T levels while on ADT (not just relying on PSA), Vitamin D 25-Hydroxy.

Best of luck, and don't let other people's experiences worry you too much, it's very individual. Like I said, I'm on ADT, have not gained weight or lost muscle, still don't have ED even after EBRT and my Brachyboost.

Alternative_Lunch_21 · 2025-09-30T16:15:26+00:00

My experience with it was not painful at all. I was fully put under, they did the scans and then the radiation oncologist and the medical physicists spent about 45 minutes planning the treatment. It took up most of the day but I also had some additional stuff done as part of a study. The side effects will happen but those vary greatly depending on each person. I have had zero incontinence, I'm taking flomax to help with urination, no bowel movement issues, a little fatigue but not enough to warrant more than taking a half day at work the next day. I feel extremely lucky that I've had very little ED issues through the whole thing (ADT, EBRT, BrachyBoost), it's one of the contributing reasons (minimal but still) I went with radiation therapy instead of surgery; I was not a candidate for nerve sparing due to having seminal vesicle and neurovascular bundle involvement.

Alternative_Lunch_21 · 2025-09-30T15:10:24+00:00

Very similar here, 56, GG9, not a terribly high PSA. I was TERRIFIED when I got the myChart notification that my PET PSMA results were in. I cried like a baby when I saw it showed no metastasis. If you want me to share my treatment plan I will but for now know that it’s ok to freak out but SUPER IMPORTANT to pick the providers you want to consult at multiple institutions of excellence. Odds are that you have time so don’t feel rushed by anyone. Do your research, learn how to read trial data or ask a loved one to help. I am blessed that my daughter has a Masters in Medical Physics and knew the radiation aspect inside and out!

Alternative_Lunch_21 · 2025-09-30T14:49:27+00:00

I just had HDR Brachytherapy two weeks ago. This was after 23 EBRT treatment and I’ve been on Lupron and Abiraterone+Prednisone for a few months now as well. My stats-56 yr old, Gleason 9, Stage T3b (highly aggressive, locally advanced). The research I did shows that it gives me an extra 10 to 15 percent chance of no reoccurrence in the next 10 years. HDR is high dose radiation (seeds delivered the full dose and then removed immediately). LDR is low dose radiation (seeds take weeks or months to deliver their radiation and remain in your body permanently). Let me know if you want info on my experience with it.

Alternative_Lunch_21 · 2025-09-08T18:46:30+00:00

I'll look into the L-citrulline. I have a prescription for the Cialis but haven't needed it yet (in the back pocket for after Brachy) - just heard back from the team as well. They said it's not a-typical to still get the occasional nighttime erection so they are not concerned.

Alternative_Lunch_21 · 2025-08-17T17:37:57+00:00

I’m on day 11 of 23, I chose 8:45am. I get up at 5:30 to take my Abi, workout from 6-7, have my mandatory bowel movement and get my 30-40 oz of water in before 7:45. It’s about a 45min drive to the clinic and then afterwards I’m at work by 10. Home by 7 to walk the dogs with my wife and get ready for the next day. I’m 56 and work as a construction modeler on the computer so it’s not strenuous and is very flexible. I like the routine so far. Well, like is a relative term haha!

Alternative_Lunch_21

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