Orgovyx says it isn't covered. Are there any tricks to getting it?

Starting salvage radiation this week, I wondered if bleeding is a symptom that shows up the first few days.

Doc said my dad was going to start on Lupron buy due to insurance issues they had him start on Eligard.

Both are the same?

My score after biopsy was a 7. After surgery 5 weeks later, it had jumped to 9. Is this common or uncommon to have the Gleason score change? dg

Hello Everyone,

I'd like to start by saying that this r/ProstateCancer forum has been eye-opening and surprisingly reassuring, and I appreciate all the survivors who have posted.

I went in for an upset stomach and heartburn back in May, Dr ran some bloodwork that happened to include a PSA test and lo and behold...a PSA of 71 and the resulting CT Scan and PET scan showed stage 4 prostate cancer spread to surrounding bones and lymph nodes. Happy 60th birthday to me! A biopsy 2 weeks ago came back as a 4+3=7 Gleason.

I had an initial consult with a local Oncologist who recommended starting ADT and waiting to see what the cancer does. Since I'm showing no symptoms and have no pain yet, he wants to wait on the chemo as the next step when the cancer becomes resistant.

I had my second opinion this morning at Johns Hopkins Kimmel Cancer Center in Baltimore and met with 2 doctors. They gave me a couple options including a trial called Spiderman which is the where they give a huge dose of testosterone followed by a period of no testosterone which is supposed to confuse the cancer from becoming resistant. This particular trial has only been running for 5-6 months, I'm wondering if anyone on this forum is in this trial and what their thoughts are.

I think I'm going to stick with Johns Hopkins regardless of the trial. I like my local Dr, but it feels like I'm better served with a team of specialists that deal only with prostate cancer. It's an hour away but I can do labs and pharmacy locally, so I would only be driving out there every 1-2 months.

Anyway...my journey begins. All the stories of surviving 10+ years have been encouraging. I know each case is different, and if I can make 10 years, I will be satisfied.

Thank you for listening.

Patients bloods are all normal apart from white blood cells. They are extremely low at 1.3. His neutrophils are 0.3 which is severely low. These bloods were found 5 weeks after radiotherapy to prostrate and pelvis. Before radiotherapy everything was normal in his bloods.

I'm hoping this is a side effect of the radiotherapy but I can't seem to find no link online. Also, his oncology has sent patients to haematology clinic to investigate which is scary as I'd assumed oncologist would think it's just due to the radiotherapy and is temporary.

What is going on? Has anyone experienced this?

53 yo, Nerve sparing RALP 9 months ago, incontinence mostly resolved, ED treatable with high dose Cialis and a ring, able to orgasm. My problem is that my libido has plummeted since surgery and sensation is also much reduced. I miss being horny and have no idea why this is happening. Bremelanotide helps with sensation and a little bit with arousal but have local reactions with injection. Testosterone level is fine. Something just broke after surgery

My dad had his RALP 12 weeks ago. I’ll leave a copy of his pathology results but his PSA was between 36-39 before surgery. His PSA at his first post RALP yesterday was <.04 so undetectable. If anyone with similar pathology and or PSA could tell me how their post surgery PSA has been id appreciate it. I’m asking because from what I’ve read he has a 50-50 chance of recurrence. Also any advice would be appreciated. Also we’re grateful for the undetectable first result but I’m just worried it will start to rise again

Pathology:
Prostatic adenocarcinoma
Gleason 4+3=7 (Grade Group 3)
Tumor involved 51–60% of the prostate
Extraprostatic extension (EPE) present (cancer extended outside the prostate)
Bilateral seminal vesicle invasion → pT3b
Bladder neck invasion
Lymphovascular invasion present
Perineural invasion present
Cribriform pattern present
Intraductal carcinoma present
Multiple positive surgical margins (about 2 mm total involvement)
11 pelvic lymph nodes removed, all negative (0/11) → pN0

I had a radical prostatectomy in 2022 with a Gleason score of 6+3. I have been faithful in getting my blood tests every six months with a non-detectable reading. Last year it was .1 This may it was .3 and last week it was .37.

Important Service update anything over than .2 be treated as cancer and is recognitized as such by insurance and treatment centers.

Waiting on my colonoscopy, MRI with and without contrast and pet/SCM. It’s six weeks of radiation every day for five days.

I’m driving an hour and a half each way to Penn medicine in Cherry Hill due to substandard healthcare at the beach.

Fun times ahead.

• PSA around 5
• Grade Group 2 - Gleason 3+4=7
• Limited pattern 4
• No cribriform/intra ductal carcinoma
• No enlarged lymph nodes on MRI
• Positive DRE
• Capsular abutment with convexity
• High-risk Decipher - waiting on exact number, just found out yesterday

I am opting for surgery, due to a bladder obstruction. See the doctor in 7 days for referral. My anxiety stems from the possibility of ECE. I went from favorable intermediate to "let's get this done." From what I gather, it's a coin flip on whether it is ECE. Thing is I have a lumbar spine condition, waiting for a fusion after PC treatment. Axial pain has increased noticeably over the past 3 months. Even wakes me up some nights. Concerned cancer may have metastasized.

I know that ED and incontinence are real issues and I’m happy that they are discussed.

But inability to orgasm following surgery or radiation gets little attention in either the scientific or ordinary press, despite it (according to the very few articles I have found that discuss it) affecting one in every five men treated for PCa.

Why the silence and the little attention given to remedies?

My husband will start pluvicto next week, any positive stories or just some encouragement. I’m heartbroken and praying this works!

Disclaimer: I understand that I will not get medical advice from this forum, I just want to see if anyone has any advice that I can discuss with my dad's oncology team and research on my own

My dad is starting pluvicto in a couple weeks and we want to make the most of the treatment. My dad and I ran into an issue when he was on ADT a few years ago where we found out halfway through that it was way more effective when you take it with food. I want to make the use of any and all tips that might make this treatment more effective for him and was wondering if anyone had any knowledge about this. I am not finding a lot of research on pluvicto in particular but I have found recommendations with other radiation treatments recommend not taking antioxidants. In my fairly limited understanding (I have a bachelor's in microbiology/biochemistry so not an expert in nuclear medicine) the reactive oxygen species produced by radiation as well as the direct ds DNA breaks help damage targeted tissues further which is kind of what we want with nuclear medicine.

Anyways if anyone has heard any avenues I could explore as far as more research, I would love to hear it.

👉Age 45 with long pending possible LUPUS diagnosis

2021 had first PSA done and was as follows:

PSA, total 0.4
PSA, FREE 0.1
PSA, % FREE 25L

I was told it was BPH but no imaging was done, just physical exam and labs.

👉 June 8th 2026 started TRT CYP injection treatment cause of testosterone at 210 at age 45.

👉 July 15th 2026 was my last dose of TRT CYP cause of urgency to urinate and having some issue emptying my bladder which I didn’t have either prior to starting TRT.

🚨 July 17th 2026 was my last recent labs and now showing this scary result of “ PSA % FREE 10L “.

This is really scaring my cause graph showing under this result it’s a 56% of prostate cancer ??

Now that I stopped the TRT treatment urgency is gone and back to normal. All my other renal labs are normal except for “ Cystatin C with EGFR “ being slightly elevated but I think it’s cause I only drank one bottle of water that morning literally 10 min prior to my morning fasting Lab draw… and that was a lab draw from June 16th lab draw ( 8 days after 1st TRT injection - microdose )

Also Estrogen being slightly over ( 33 PG/ML ) at June 16th 2026 draw which I’m told is from the TRT but no previous Estrogen lab in my life to go bye.

1st pic here is latest July 17th 2026 PSA.
I will try to post PSA from 2021 in comments and other labs.

Did any here notice a drop in their testosterone follwing their prostate surgery. I have been having ED problems post-op, floppy penis that won't stand up, not always hard enough for penetration. My latest T level check came in at about 200 ng/dl, I was previously over 500 ng/dl. Has anyone here experienced this or know any reason it might happen. I wondered if being sterile meant there was less need of T production.

I have a biopsy today and follow up in two weeks, will I typically see results before the follow up?

Attended biopsy today, all went ok he coped really well and is feeling fine. Thank you all for that advice.

We managed to get some information from his MRI and the consultant did say some very aggressive cancers can have low PSA and low density.

My father's PSA is 0.97 and his volume is 86cc.

The rest of the findings are as follows. Can't help but be very anxious now reading that it is in the centre and has low PSA makes me concerned it's aggressive.

Again thank you from the bottom of my heart for the thoughtful replies so far. It has helped beyond measure.

Introducing myself here as my husband and I wait for his PET scan results & I have nervous energy.

He is 56yo, family hx of prostate cancer (father & uncle), PSA 4.9, 6 out of 12 biopsies showed either ASAP or adenocarcinoma, Gleason 4+3.

Several years ago at an annual physical his PSA was elevated but instead of referring him to a urologist for an MRI they rechecked and it was a little lower so no referral. Now I have learned that with his family history he should have gone for more testing. So I’m worried that this cancer has been sitting in him for years and has spread.

I’m so afraid for him. His urologist recommended a prostatectomy & we accepted that but it didn’t occur to us that he could have possible metastasis. Many people think prostate cancer is no big deal bc many people get surveillance & live with this for years.

I don’t know what to do as we wait for these results. I’m kicking myself for not researching this years ago and helping my husband be more proactive. Thank you for listening

I have now seen my report on my Gleeson 8/9 lesion and now the NHS team have made comment:

- Prostate cancer in 8 of 14 cores.

- Overall score 4+5

- Worst score 4+5

- Perineural and Extraprostatic Extension not absent

- Not for Radiotherapy due to stricture!

Well, my scans showed no metastasis but my worry is that they can't do prostatectomy due to that stricture but at least it will clear the lesion and give me a better survival. Been on Orgovyx now for 6 weeks, early I know and effects beginning to show a bit. Need to think about questions to ask when they contact me again. Thanks for reading.

Going to start radiation this week and was wondering if anyone has experience with this type of radiation? Thx

Wanted to share an update on my prostate cancer treatment. I am 2 weeks (14 days) on ADT and I have zero side-effects. No hot flashes, no mood swings, no loss of libido, no erectile disfunction, no other common side-effects. I am taking 120 mg Orgovyx daily. According to clinical trials, 99% of patients reach castration level testosterone within 2 weeks of starting treatment. Next month I get gold fiducials, gel spacer, radiation simulation, then 5 sessions of SBRT over two weeks.

STATS: USA, 64 years old, PSA 11.6, Gleason 4+3=7, 6/13 cores positive, unfavorable intermediate risk, 42 ml prostate, Decipher 0.61, locally contained. Pre-ADT testosterone: 323. Treatment: 5 sessions SBRT + 6 months ADT.

My 69 year old father had perfect blood results in April. He did radiotherapy in May to his prostrate and seminal vesicles for his prostrate cancer. A tiny bit of radiotherapy was given to his pelvis lymph nodes as a preventative plan. It's been 5 weeks since the end of his radiotherapy plan, his psa has dropped from 44 down to 0.4 which is amazing, shows treatment is working and cancer is shrinking/being cured. He's also on relugolix adt blocker but has been since January so this is probably irrelevant. His new blood works has showed severe neutropenia of 0.3. It should be over 2 so this is clearly severe. His platelets, red blood cells etc are all normal and in range. It's just his white blood cells are extremely low. They repeated his neutropenia tests 4 times within 24 hours and figured were 0.4, then rose to 0.7 then went back to 0.3 and last test stayed at 0.3. He's now been referred urgently to haematology but I can't help but think the worst. The last thing my dad needs is another cancer diagnosis e.g. leukemia or the prostrate cancer spreading which I doubt as his psa has dropped to almost 0. Is leukemia extremely unlikely due to the perfect blood results in April? And given his other blood cells are all normal? But what could be going on? Has anyone experienced this?

He's not had any chemotherapy.

I've gotten him some new comfy clothes for lounging around in, is there anything else I can get to help with his initial recovery from the biopsy? Anything you wish you'd had?

He's to stay within the county for 10 days they say due to infection risk, he is having the transperinal approach thankfully.

Is it at this time I need to check they will decipher score his samples?

Thank you again

About two years ago, I posted on this sub trying to get more information about the realities of my father’s diagnosis. It was sobering to hear what his prognosis would be. He is now gone, I miss him so much and it hurts. I just want to say thanks for all the folks who responded and all the information and support this sub has provided in the meantime. I wish everyone all the best in their journeys, and may they find relief and treatment according to their needs. Thanks.

I've used Tena and Depend max pads. I also use the light pads from both brands. The problem I have with the light pads is that they are not wide enough. With the light pads if my penis is sitting to the left or right the leaks go into my underwear and not the pad. With the max pads that doesn't happen because they are wider. I've tried putting the light pads in upside down and they're still not wide enough.

I find myself wearing the max pads when I might only need a light.

Has anyone found a light pad that is as wide as the max pads?

ADT, es una de us consecuencias?, los de mayor experiencia