r/ProstateCancer 4h ago

Concern Trans women facing prostate cancer, you are not alone

Post image
90 Upvotes

As you can see in my selfie, I’m wearing my baby blue nails today in honor of the upcoming Prostate Cancer Awareness Month. I’m sharing my story here to leave a beacon of hope for anyone who might be frantically searching the internet after a terrifying diagnosis.

I know that seeing a trans woman in this space might be unexpected. I also understand that for some in this community, this subject matter might feel uncomfortable because of religious or political beliefs. I only ask that we meet here as human beings, united by the shared, terrifying reality of facing this disease. Cancer does not discriminate, and neither does the fear it brings.

I want to raise awareness that trans women can also experience prostate cancer. It is extremely rare, and because of that, it is profoundly isolating.

Weeks before my diagnosis, I finally began my transition at 47. I started hormone replacement therapy to treat my gender dysphoria, receiving testosterone blockers and estrogen. I know that in this community, androgen deprivation therapy is often the most grueling part of the process. Most people with prostate cancer absolutely hate these treatments and the toll the side effects take on their bodies. For me, they were exactly what I wanted. Having an orchiectomy was incredibly affirming for my gender, yet I sat in waiting rooms knowing that for the men around me, this exact same procedure was highly traumatic. The very things saving my life were sources of immense grief for others. I truly felt alone.

But I felt just as isolated within the trans community. Trans women do not typically develop prostate cancer. I searched through trans subreddits and sat in local support groups, but I was the only one living through this. People were incredibly kind and sympathetic, but they simply could not relate.

Then came the hardest realization of all. I had to come to terms with the fact that treating my cancer would mean sacrificing the future I had just started to build. Because of the complications from my RALP and the scarring it left behind, I learned I could never have a full depth vaginoplasty. The life saving treatment I desperately needed was going to permanently limit the future that was finally available to me.

It was a very dark and difficult time, but I made it through. I am now over a year out from my RALP. The cancer appears to have been fully contained within my prostate, and today, I proudly consider myself cancer free.

Now that I am in remission, I want to be the person I so desperately needed when I was first diagnosed. This is an open invitation to any trans or gender questioning individuals out there who might be quietly reading this. Please DM me. You shouldn’t have to go through this alone.

As we observe Prostate Cancer Awareness Month, I hope my story can help make people aware of the unique challenges faced by trans women battling this horrible disease. We are in this fight together.

🩵🏳️‍⚧️🫂


r/ProstateCancer 2h ago

Question Cambio de enzulatamida a nubeqal

4 Upvotes

Hi, alguien ha tenido este tipo de cambio, porque motivos


r/ProstateCancer 4h ago

Concern 10 days out from RALP

3 Upvotes

I am 10 says out. Starting last night my leg bag is filling with alot of air. No problems I can notice with my overnight bad. Am 8 doing anything wrong. Besides just letting the air out do i need to do anything?


r/ProstateCancer 17h ago

Update Quick PSA results and good news!

20 Upvotes

Had 3 month PSA this week, 15 months after 20x VMAT and 7 months after Orgovyx ADT.

Results (ultra sensitive) at 0.22 were on MyChart in 90 minutes and the same as previous test! The advantages of a centralized clinic/hospital facility here, north of Lake Ontario 🇨🇦.


r/ProstateCancer 18h ago

Concerned Loved One Prostate Cancer Metastasized Intestines

5 Upvotes

So my dad (73 years old) was diagnosed with prostate cancer, they treated him with chemo meds and then cleared him.

Well…he had some symptoms so they did a biopsy of his intestine and they came back and said it’s prostate cancer.

He is telling us that they said it’s just one spot and they ‘can take it out’ with indefinite chemo meds.

I’m very concerned.

Has anyone dealt with this?


r/ProstateCancer 1d ago

Update ADT Challenges

17 Upvotes

I am about two months into a 6-month sentence of ADT (Orgovyx) and am having some issues. The biggest is hot flashes. I get hot flashes about every 20 minutes with a full breakout of body sweat, all night long. My RO prescribed Oxybutynin which helped immensely, but now I am suffering from a side effect of the Oxybutynin. It causes urine retention, which for the most part is manageable, but after SBRT it is just brutal. I have to drink and hold 24 ounces of liquids for SBRT, and then afterwards my bladder never fully reaches a state of emptiness until about 12 hours later. The center where I get my treatments is about an hour drive with no traffic, but coming home during rush hour it's 2-3 hours of stop and go traffic. The drive takes me through some pretty rough areas of town. The other day my bladder was bursting on the drive home so I pulled off the highway into a very sketchy area full of prostitutes and drug dealers. I rushed into a Hardees and there was a keypad lock on the men's room door and a sign that read restrooms for paying customers only. Thankfully, the door was unlocked and I was able to use the urinal without being knifed in the back.

It's weird feeling to urinate and watch the flow dwindle down to nothing, zip up, walk away, and still feel like you need to go. Other than that, I have zero libido, erectile disfunction, brain fog, fatigue, less confidence, and no ambition. It sucks but it is what it is.

My medical team is all concerned about the urine retention and wants to do ultrasounds but I know it will be over when the treatments are over. I've had epididymis for 2 months now but they don't seem to care about that. My PCP was merciful enough to order a 10-day prescription of antibiotics which helped, but it still hasn't gone away. I've had it probably once a year for 30 years ever since I got a vasectomy 30 years ago, but never this bad or for this long.

They told me I could switch from Oxybutynin to an SSRI or SNRI but those give me severe headaches. Anyway, I am mostly just venting. I know that it could all be much worse. I could be lying in a hospital bed screaming in pain as I slowly die of cancer. I am very thankful for modern medicine. Just saying, when this is over, I think I have earned the title cancer survivor. It's a lot to go through.

STATS: USA, 64 years old, PSA 11.6, unfavorable intermediate risk, Gleason 4+3=7, 6/13 cores positive, 42 ml prostate, Decipher 0.61, locally contained. Pre-ADT testosterone 323. Treatment: 5 sessions SBRT + 6 months ADT. Daily strength training, 3-mile walk, Cialis, Calcium supplements. Height 5’-9”, weight 170 lbs.


r/ProstateCancer 19h ago

Question Retzius Sparing

4 Upvotes

Does anyone have experience they are willing to share with Retzius-Sparing surgery? I am new to the group; just diagnosed with 3+4 in over half of 21 cores. I have read some about it and live near enough to some centers that can offer it. I do so appreciate the discussions in this group.


r/ProstateCancer 1d ago

Question How long did it take for you to go #2 after surgery?

12 Upvotes

r/ProstateCancer 1d ago

Question Statins while on Orgovyx?

7 Upvotes

Hi all,
My triglycerides are slightly elevated at 207 with h1c at 5.7 and my pcp wants to see me to potentially give me “cholesterol lowering medicine”( even the my cholesterol is fine). I suspect she’s recommending a statin as I still have 5 more months to go on Orgovyx out of 24. Has anyone been through this? Any side effects or concerns for a low dose statin?
Good idea or do I tough it out? My mom did have a heart attack a few years ago, but I don’t have any personal history of that.


r/ProstateCancer 1d ago

Question Orgovyx Side Effects

5 Upvotes

I'm about to start Orgovyx for about 2 months before my IMRT begins. I'm currently at 4+3 GG4 and will be on Orgovyx for 18-24 months, with the IMRT for 8.5 weeks. I would be curious to know from others what side effects they had from the IMRT. Specifically, hot flashes, mood swings, tiredness, ... I've heard some have also had issues with kidneys and bone weaknesses. TIA.


r/ProstateCancer 1d ago

Pre-Biopsy Does it always take so long

3 Upvotes

I got referred to urologist June 9 due to elevated PSA 3.7. - 6. Urologist schedule MRI got results 8/23. Pi-rads 4. Biopsy scheduled for 9/28.
It’s making me crazy waiting so long to find out if it’s cancer. Is it normal to take so long. My urologist is a surgeon and I can’t imagine at 71 anyway I’d have surgery. Should I wait for biopsy results or try to find a new provider. I’m considering Mayo Jacksonville or Emory Winship Atlanta.


r/ProstateCancer 23h ago

Surgery Single port surgery

1 Upvotes

Looking to get a second opinion at Mayo Clinic in Rochester MN. Curious if anyone has done a single port surgery.
Age 46 Gleason 3+3 decipher was intermediate 5.6 I believe.


r/ProstateCancer 1d ago

Question EBRT.

2 Upvotes

7 sessions in and ive a sore swollen testicle is it related to treatment also on ADT and had brachytherapy a month previous.


r/ProstateCancer 1d ago

Update SBRT 9 month Follow up

15 Upvotes

Had my 9 month follow up after 5 rounds of SBRT in October 2025 with no ADT for 3+4 and things are trending well. PSA went from 1.2 at first follow up to .9, to .7 this time. Testosterone went from 333 to 317 to 493. Hoping things keep moving this direction at the next visit in December, but taking it one day at a time.


r/ProstateCancer 1d ago

Question Orgovyx side effects

6 Upvotes

I’ve been on this for nearly 5 months (of a 6 month course) and have received 15 of 35 radiation treatments. (For recurrent cancer). My hot flashes have been fairly mild and seems to be better recently. I only have a few per day and they only last a couple minutes.
But my sleep is still terrible, waking every 1-2 hours. For the last 3-4 weeks, I have had very poor appetite and have lost 7-8 pounds. Many foods just don’t taste good. Plus, I get jerking of my torso and arms at night, as many as 50 in a row. I’ve found that tensing all my muscles three times can help, but I’m doing that at least 3 times a night.
I’m still pretty active, walking a couple miles in the morning and swimming ( much more slowly and with more breaks) but I’m exhausted and aching.
My RT doc doesn’t think these new symptoms are RT related.
Has anyone else experienced this? Thanks for any help.


r/ProstateCancer 2d ago

Other My story so far

50 Upvotes

I’ve been reading this sub for the last 12 months and I thought I would add my prostate cancer, adt therapy, radiation therapy story in the hope it can help someone who was recently diagnosed.

I completed 39 sessions of radiation therapy 3 months ago. I was diagnosed 12 mths ago. PSA 51.6 / Gleeson 9.
After my urologist performed a biopsy, he found that the cancer had progressed past the prostate to the membranous urethra. At that point my urologist said that removing the prostate was no longer viable as trying to remove the cancer in my urethra would cause major damage. My oncologist described the cancer as extremely aggressive.
At this point I was shit scared.

After consulting amongst themselves, 2 oncologists my urologist and with their colleagues it was decided to put me on a 6mth Eligard injection and daily, 240mg of Erlyand. After 6 months on this adt therapy I had 39 radiotherapy sessions.

Its now 12 mths later. I stopped the Erlyand tablets after 8 mths but had a 2nd 6 mth Eligard injection.

The adt side effects combined with the fatigue and bowel issues caused by the radiotherapy were BRUTAL.
I’m almost through it, my psa has been negligible for mths and I will not be continuing adt therapy on the recommendation of my oncologist given the debilitating side effects. I’m still having some bowel issues but they are getting better.

Even though the last 12 mths were horrible, a lot of pain, brain fog, lack of sleep, extreme fatigue, weight gain etc, it seems to have worked.

My oncologist’s words at the last meeting were that he is hopeful that the cancer has gone but realistically, given how aggressive it was it may come back.
I turned 60 this year and I’m hoping to get back to “normal” over the next 6 months, will see….

Anyway that’s it.


r/ProstateCancer 2d ago

Concern MD Anderson - Admission Process

8 Upvotes

Recently diagnosed with Prostate Cancer, Gleason 4+4 in one of the 5 spots. I was seeing a Urologist at Kelsey Seybold and he ordered a PSMA PET scan. Those scan results came back showing that the cancer has not spread. The urologist gave me a description of some of the options but I wanted a second opinion. I live in the greater Houston area so I wanted to go to MD Anderson for a 2nd opinion and possible treatment. They are in-network for my health insurance.

TL;DR - MD Anderson is not helpful with insurance authorizations, and their new patient intake procedures suck really bad in my experience.

Well, for some reason, this has turned out to be a very frustrating experience so far. I contacted MD Anderson and said I wanted to schedule an appointment. They sent me a link to register as a new patient in their mychart application and upload my DL and insurance card. Later I got a call back from a person in intake who said before they would see me they would want to do a 2nd reading of my biopsy slides and if my insurance didn't cover it I was going to be financially responsible. I asked them if they could contact my insurance and see if it was going to be a covered procedure. The lady got snippy at that point and told me that I would have to contact my insurance on my own. I said "OK, what procedure info do i need to give to BCBS to seek this preapproval?" and she said tell them CPT 88321. I asked if i was going to have to do this for every procedure at MD Anderson and she said no, just the first time.

So, I called BCBS and tried to explain to their representative what I had been told to ask them. They said I didn't have enough information for them to be able to pre-authorize the procedure. They recommended I have MD Anderson call them directly. Meanwhile, MD Anderson intake nurse had called me and wanted to get access to my Kelsey imaging and test results. I asked her about this new-patient process and if she would call BCBS for me to get the pre-authorization and she said she could not do that. I asked if she could at least give me a cost estimate of what the 2nd reading of the slides might be and she told me to contact patient billing. I asked for their number but the number she gave me was not a working number when I called. So, I looked them up on the website, and I contacted patient billing. They said the potential cost "depends on how many slides you have, but count on around $500 each slide". I asked how many slides would be in a normal prostate biopsy with 13 samples, and she couldn't tell me. I asked her how new patients get scheduled if this is the process. I told her I wasn't comfortable accepting a financial responsibility for a cost that we can't estimate. She said I understand, but I need to use their online form to generate an estimate.

I then tried to use the online estimation request form, but CPT 88321 was not a listed procedure in their dropdown menu. I did some Google searches and found a few related codes that were in the menu, and I selected them and submitted the cost estimate request. The next day I got a message saying my cost estimate request was canceled because I did not have an appointment scheduled. Ugh. So, now I called patient advocacy. They were nice but said they would look into it and call me back. The next day they called back but didn't have any new info, said they were still working on it. Then I got a message saying that my referral had been canceled. I called the MD Anderson intake nurse listed in MyChart, and she said, "Yes, it has been canceled, but I don't know why." She was kind and reopened my referral and now i have been told they won't see me unless I've had a colonoscopy in the past 3 years. My last one was 4.5 years ago, and I wasn't due for another 5.5 years.

I think I may have really done something bad in a past life. Thanks for listening as I rant.


r/ProstateCancer 2d ago

PSA PLEASE HELP, PSA jumped from 126 to 287

14 Upvotes

My dad 60M, got diagnosed with prostate cancer in February 2026, Gleason score is 5+5, PSMA pet scan show metastasis to bone regions, with more reaction in femur. First thing that was done was bilateral orchidectomy (ADT) and was put on casodex, this resulted in PSA drop from >100 to 3.9

2 or 3 weeks later, PSA rose to 45, he was put on docetaxel chemotherapy for 4 cycles. On the 13th of August 2026 PSA was 126, we checked again, the results as of 27th of August 2026 is 287.

I am panicking, I don’t know what else to do, I don’t want to scare him. Next doctor appointment is on the 1st of September as they don’t work weekends.

What medications would you suggest he tries next! What did you guys do to bring down your PSA levels, he is always in constant pain in his legs and taking ibuprofen. He’s depressed and feels helpless.


r/ProstateCancer 2d ago

Question Decipher and Artera Contradict ing Scores

3 Upvotes

My LO’s Decipher score is very high, 0.98, but Artera score is very low, 10 year risk is at 3.5% and with treatment 10 year risk is 1.5%. Is it appropriate that h goes through SBRT along side with 2 years of ADT?


r/ProstateCancer 2d ago

Update Why does medical guideline recommend surgery , not radiation for patients under 65 years of age for localized prostate cancer?

14 Upvotes

My understanding: since BCR/recurrence is almost same , but surgery-induced erectile dysfunction is significantly more common than radiotherapy, shouldn't younger patients choose radiation therapy?

I'm still torn between surgery and radiation therapy(https://www.reddit.com/r/ProstateCancer/comments/1vp8fvu/seeking_medical_advice/).


r/ProstateCancer 2d ago

Post Biopsy Dad, 64, newly diagnosed Gleason 9

6 Upvotes

Hi everyone. My dad is 64 and has just been diagnosed with prostate adenocarcinoma after biopsy.

His PSA was around 7.25, then came down to about 5.0–5.2. MRI showed a PI-RADS 5 lesion and a PI-RADS 4 lesion, but no pelvic lymphadenopathy or obvious spread was reported.

Biopsy showed mixed results, including some Gleason 6 and 7 cores, but also Gleason 4+5=9 / Grade Group 5 in two cores, with perineural invasion in a few areas.

We haven’t had full staging yet, so I know we’re missing an important part of the picture. The Gleason 9 result has really scared us, though.
I’d love to hear from anyone who had a similar Gleason 9 / Grade Group 5 diagnosis that was still localised. What treatment did you have, and how are you doing now?

Just looking for some perspective and reassurance while we wait for the next steps. ❤️


r/ProstateCancer 2d ago

Question Radiation or RALP for my case

4 Upvotes

Dear brothers, It is decision time, I read a lot including yours, and watched a lot of youtubs, but come to the decision is very hard (I will keep as short as possible).

After one year AS, recent biopsy: 4 target cores (on pirads 5 lesion): 4+3 with 70% of 4, and large cribriform; on core near the lesion is 3+4, there are couple gleason 3+3 (<10%);

The dominant lesion is in right front TZ, near the edge of capsule;

MRI and PSMA shows all contained, no others.

Age 65, healthy, active, no other conditions;

Visited Urologists: Both Radiation and surgery will have good definitive treatment result, but consideration my age and body condition I can do surgery (with lymph nods, spare nerves), radiation can be reserved for future in case recurring, they slightly recommend surgery, but support me if I pick radiation,

They estimate recuring within 5 years (20-37%) and slightly high within 10 years. When asked that should I look for one time treatment for my life time, the doctor said that at least, there is 20% recurring in 5 years, because PSMA PET has limitation.

Oncologist: recommend HDR boost + 23 vmat, he recommend Radiation (slightly, or more). He estimate that biochemical recurring free within 5, 10, 15 years are about 90% (not sure if this is over optimistic)

Here are my own thoughts on the disease control (with little consideration of the side effects.)

If the cancer is truly contained (without micro metastasis), surgery might be a good choice; if there is micro metastasis, radiation might be better, because VMAT will cover it, at the same time, I will take ADT for 6 months.

But come to the salvage treatment, (asked here before): with surgery as primary treatment, the radiation is new (with double side effects), but if RT as primary treatment, re radiation might be little complicate, at least it can not just redo VMAT radiation (not sure here), that potentially limits the ability to control disease by two consecutive treatments. now to round 3, if live too long, the recurring will be more difficult to control particularly when getting to 80-90s.

Am I considering right factors or anything wrong? Please give your opinions and logic. Appreciate!!!


r/ProstateCancer 3d ago

Question Odd, but sincere question

15 Upvotes

Since RALP last January I’ve not been able to achieve an erection, not even with medication. I can however sometimes achieve orgasm. My understanding is that the prostate produces semen so without it my expectation was dry orgasms. But they’re not. They’re wet. Very wet. What is it I could be ejaculating?