Welcome to r/ProstateCancer

2 years ago I had a prostatectomy. My entire prostate was full of cancer, edging into my bladder. 6 months later PSA started rising again. I started Orgovyx and had 20 rounds of radiation. About 1 year after starting Orgovyx I started getting arthritis. I now have it in my left ankle, left knee and lower spine. I've never had arthritis before. The lower spine arthritis caused excruciating pain all the way down my left leg (sciatica flare up). I am almost 61. I also gained 25 pounds after starting Orgovyx. Since I've never had arthritis before, I wonder if prostate cancer and/or Orgovyx is the cause. Anyone else have this experience?

I've read on some of the Facebook groups where people are saying Flomax (tamsulosin) can actually make prostate cancer worse or cause you to get an aggressive form or prostate cancer. I'm having trouble finding any concrete info on this linked specifically to tamsulosin. Does anybody have any information on this?

Well after 4 short months the enzalutamide and orgovyx aren't working. PSA went from 0.24 to 0.28 to 0.34 and now 0.87. Oncologist dropped my chemo with 2 rounds to go and wants me energize and get ready to apply to be part of a clinical trial.

New CT scans this upcoming week to check lesions/tumors on my bones. He's gonna compare measurements and see if there is anything new. Labs have been good but PSA rising so the prostate appears to resist the meds.

Any good options besides more chemo, radiation or this clinical trial? Let me know.

Everyone wants me to take ivermectin and fenbendazole. I'm sticking with his care plan for now. Just freaking out a bit.

Thank you.

Hey guys! So my dad was diagnosed with prostate cancer, he had surgery to remove his prostate back in October but was not successful because the cancer has spread to his lymph nodes. His doctor started him on Zoladex injections, my dad is starting radiation soon as well & he is also starting Erleada. I just wanted some information about any one or anyone who knows somebody who has taken Erleada and the success of this medication? The doctor has told me dad about possible hot flashes, fatigue and rash side effects but i know everyone is different. Thanks in advance!

I'm extremely grateful for all the replies to my previous.

The level of concern & helpfulness here is incredible. I had planned to reply to every post, but tbh found myself suddenly overwhelmed, and needed to walk away for a few days.

I think this is part of coming to terms with everything.

Obviously, I had tried to mentally prepare myself for a negative outcome. And, even when I got the bad news, I didn't panic, still didn't feel it was that serious.

I asked the Dr. as many rational questions as I could, and on my way home was thinking about how to approach everything logically. (as a programmer & tech professional for decades, one tends to believe one thinks exclusively in logical terms).

So far, I've only told one close friend and two family members, while still maintaining a degree of positive bravado.

But, in reading some of the replies, and then my own initial post, it suddenly struck me that I'm not just dealing with an exercise in logic. It's not like finessing some lines of code until I get the intended result. This is real.

It's odd and difficult to quantify, but initially, it seemed almost as if it was happening someone else. It wasn't until the next day I experienced something of hard landing into reality.

I guess that's part of the denial phase, which also came with a shower various other emotions.

I'm still not in a position to ask sensible questions - seems the more I learn, the more I need to know.

Having said that, I feel the emotional confusion has acquiesced, so I feel better positioned to start doing the grunt work on learning.

tbh, I was reluctant post this because I'm still coming to terms with things. But, I'm also mindful that I'm not the only one dealing with this new reality. Consequently, these comments based, on initial experiences may be useful to others, now or in the future. glta.

Hello. So the urologist has ordered a PSMA PET scan for my father. The radiology center informed us that it includes a CT with contrast. Is this standard procedure or can we decline the contrast as the urologist didn't specify it and my father had just undergone MRI with contrast?

Has anyone experienced an improvement in post-RALP incontinence by losing weight? Like a lot of guys I’m carrying too much abdominal fat, some of it due to a medication I was on. I’m off of it now and I’m wondering if my incontinence might improve if I can shed some pounds.

Husband had surgery on Thursday, Surgeon said everything looked good and that we’d have the pathology report in 48-72 hours.

I told him Friday was my birthday and that for my birthday I wanted a pathology report of clean margins and no lymph node involvement.

I didn’t mean I expected it by my birthday, just for those results in the final report.

He said he didn’t know if he could deliver that on time, and I went onto another question, didn’t clarify.

Then my husband didn’t have his sign in and password on his tablet at the hospital, so we couldn’t sign in to see any results. Didn’t think anything would show up before Saturday anyway, when he came home.

Well, he’s home. Signed in to check and there’s a pathology report showing clear margins and lymph nodes, even downgrading his cancer from a 4+3 to a 3+4, but it’s dated the same day of his surgery.

Did anybody get a preliminary pathology report and then a more detailed on a few days later?

I don’t know whether to celebrate or not. Missed the dr at the hospital post surgery both times and the husband doesn’t remember dr saying Great news, clear pathology report, but he missed a lot of his post surgery care instructions, too.

He’s doing great, BTW. Was really hurting the first 28 hours or so from the gas pain and maybe the drain, but I kept pushing until they switched his pain meds from narcotics to souped up anti inflammatories and he felt much better soon after that.

He’s home now, says he still has some gas pain, but just from the look on his face, sound of his voice and how easily he’s moving around, I know he’s not feeling too bad. Night and day’s difference from the first one after surgery.

—Teresa

Score was 0.64 what is it in regular and is it good or bad

7 weeks past prostatectomy and things are going pretty well. Still leaky, but things seem to be getting better. My question is diet. Being diligent, I gave up coffee, chocolate, pizza (the holy trinity for me), citrus, red and processed meats, dairy and spicy foods. My bladder has always been very tolerant of my eating habits but I want to make sure to give it a rest. The ultimate question is, when can I reasonably start bringing these things back in? I don't want to spend the rest of my life eating cardboard and drinking water.

I might be looking for reasons here. Has anyone had any type of candida infections while on hormone therapy? I saw females on estrogen have high incidence of yeast but nothing about males on ADT.

My husband had his last (2nd) Lupron shot in December. He still feels some side effects but it's getting better. His allergies have been acting up bc of the seasons and he saw urgent care twice for a raw, painful throat. They said it's post nasal drip but it got progressively worse. I got him into ENT and with a scope they found a very severe fungal infection. He's finally getting energy and clear headed again after radiation but he's in so much pain.

Is anyone using homeopathic methods to assist or replace traditional western methods! I’m 64, had surgery without radiation because “we got it all” 6 years ago, had a recurrence last year and did 6 weeks of radiation. This did not help and my psa is a .4 and rising. (With no prostate any psa means there are cancer cells.). The doctors say there is nothing they can do until the cancer lands somewhere. I’ve been told by the head of urology at a major Boston hospital that hormone therapy does not work. A homeopathic doctor consulted with me and said I need a very strict keto diet because sugars feed cancer, many expensive supplements, weekly vitamin c IVs and oxygen hyperbolic sessions. All very expensive ($5,000 a month) and not covered by insurance. The goal is to stop or slow the cancer cell multiplication to extend my life. Is there anyone that has had experience with this treatment and can share its effectiveness? I have no other choice but don’t want to just throw my money away.

I'm 37 years old. I drink between 2 - 3L of water a day. I feel I go for a wee every 2 hours. Other symptoms are lower back pain on some days sometimes can go days without any back pain. I'm tired every day and weird sensation in lower abdomen.

I had the finger up and prostate seems to be normal size but doctor found a lump. He's unsure if it's a lump on prostate or a hemorrhoid. This made him do a 2 week referral. My PSA came back 0.4.

What's the chances of the lump being cancer? Since finding the lump I've not been sleeping and not eating much all due to stress and worry of cancer. All I think of is leaving my little girl behind.

I am a 72 year old man with prostate cancer (Gleason 8,4+4). Cancer is encapsulated in my prostate, no metastasis. I'm about 10 pounds overweight but am an avid cyclist (last summer for example averaged about 250 miles per week) so in pretty good shape. I've been on ADT since the end of February. Next Monday I go in for fiducials and saline filled balloon insertion. A week later a dry run of EBRT and about 10 days later actual EBRT begins. I'm wondering if anyone out there has gone through this stuff and if so what their experience has been.

Specific questions; 1. What will the level of discomfort from the fiducial markers and balloon be. Will they impede my riding? 2. My radiation oncologist originally wanted to do 28 treatments but has suggested that if I did more treatments at a lower dose the likelihood of post treatment side effects is diminished. Any thoughts or experiences that validate this? 3. What day to day effects can I expect from the treatments. Will I still have the energy to ride?

Im 41 years old. Underwent a TURP 3 weeks ago and Im having a tough time afterwards. Got frequent urgencies and I can’t under no circumstances hold urination, got max 5-10 s reaching a toilet, and the pain during the end of urination is really rough. Infection has been ruled out.

Im aware its kind of early to complain but I just want to know other experiences. Frustrating as I want to go back to work ASAP.

Thought I would share as I have found it useful. I have been on this journey since last December. Getting my head round the information from test such as biopsy results has been all a bit confusing. Speaking to the professionals is all very good and I think I understand what has been said, but get home and think I should have asked this or what did that mean etc. I have found if I copy/paste or type the information into CHATGPT with the opening line of explain to me in layman terms it all becomes a lot clearer.

Today my husband made his decision on treatment. He is going ahead with brachyboost plus 6 months ADT. I want to thank everyone that encouraged us to take time to research the options. Had we not, he would have jumped into surgery right away and after doing the research it seems that may not have been the best option for him.

I will share the reasons he made this choice, with the hope maybe it will help others wade through these waters down the road. When he was first diagnosed two months ago, we knew nothing about prostate cancer. Now I know way more than I ever wanted to! It’s challenging to make these decisions because there is no right answer. There are so many things to weigh. So I am not saying my husband’s decision is the right decision for everyone who is high risk. This is just why my husband made the decision he did.

My husband is 59, his cancer is localized Gleason 9, confirmed with a PSMA scan, and his PSA is 5.9 (didn’t change from December to May). We consulted with a urologist, a robotic prostatectomy surgeon and a radiation oncologist, and also talked to a trial manager for the GUN trial. Everyone we asked said his cancer is high risk for recurrence, because of his high Gleason score.

The surgeon and the urologist recommended surgery, but both said studies demonstrate there is a 50%+ risk of recurrence with high grade localized prostate cancer, which would require salvage radiation and 24-36 months ADT, and even after this there is 50% chance of additional recurrence. This means 25%+ of high risk localized cases recur despite going through surgery, radiation and ADT. Everyone we talked to seemed to agree on this stat. The surgeon also said he wouldn’t be able to spare the nerves because it was too risky - leaving the nerves would result in a higher risk of recurrence.

The radiation oncologist recommended brachyboost - EBRT, LDR brachytherapy and 6 months ADT (based on a recent Japanese study that demonstrated 6 months worked just as well as 24 months when combined with brachyboost in high risk localized cases at 9 years follow up). The outcomes from this study as well as others suggest a 10-15% risk of recurrence for high risk localized cases after brachyboost plus ADT. There are other risks with radiation for sure, but with my husband’s Gleason score there is a high likelihood he would end up needing radiation plus extended ADT after surgery anyhow and then have the side effects of surgery, radiation and the additional months of ADT. The radiation oncologist also mentioned the benefit of brachyboost is the EBRT targets the cancer more broadly and is better at catching stray cells that may have escaped locally; the brachytherapy targets the bulk of the disease in the prostate and can go directly after the tumour itself as well as the rest of the prostate; and the ADT works more systemically. The combination of these three hits the cancer hard from multiple angles right at the start. This made sense to us and in combination with other factors contributed to choosing this option.

We also considered the GUN trial and while interesting, it’s still unknown whether the neoadjuvant drug treatments would have any beneficial impact prior to surgery. If they didn’t, then my husband would be left in the same position as if he had done surgery. The risk didn’t seem worth it to him.

It was a really hard decision and it took a lot of research and asking a lot of questions to arrive at this point. I wish there was a higher likelihood that surgery could catch it all in one go, but the statistics weren’t in my husband’s favour. He considered gambling with the hopes of being one of the lucky ones that wouldn’t need salvage radiation and ADT, but in the end decided he didn’t want to take that chance. He wanted to go at it hard from the start, with the hope recurrence risk will be low.

Now the challenge is not looking back! I’m great at doing research and asking a lot of questions - taking action! Not so great at sitting back and letting things happen in situations like this. I know there is no benefit to second guessing things though, because you never know what the outcome would have been on the other side. We did our due diligence, got multiple opinions, asked a lot of questions and spent a lot of time talking to each other; we’re both on the same page. Now we hope and pray for the best outcome! I hope his treatment goes smoothly and that he won’t have any complications. Thankfully he is otherwise healthy and relatively young, so hopefully that will work in his favour.

Thanks again to everyone for all the support. I couldn’t have got through the last two months without you! 🙏🏻 Onward and upward! All the best to everyone in the midst of making these hard (major understatement!) decisions. Do your research, know there is no one right decision for everyone and make the decision that feels right for you.

I was shocked that I didn't have a chance to speak or meet with my prostate surgeon to discuss my surgery & what happens to me in the future. The hospital made appointments for me to see the surgeon's nurse practitioner & said the surgeon is very busy & that is how it works. Did this happen to you? Were you able to speak to your surgeon after surgery to discuss your future?

Why isnt anyone talking about it on here?

Has anyone used either Gemtesa or Mirabegron (generic for Myrbetriq) for urinary urgency?

Was it beneficial?

Neither one is covered by my insurance so I’m looking at alternatives like GoodRx, etc.

Hi Blessed Family, I will make this very concise

08/23 Biopsy show 2 out of 12 core with acinar type Carcinoma. Prostate size was 120cc. I immediately opted for RALP but with advice from well meaning people on here and my quick thinking Urologist. He steered me away from RaLP considering my being overweight and overall side effects post op. He opted for HOLEP. PSA pre op was 24.

Oct 24 HOLEP done. After 3 months prostate size down to 35 from 120. However post op PSA was 4.8 and 5.2. Surgeon was worried that there may still be a significant amount of Cancer left in Prostate. Ordered MRI. 03/24 MRI shows PiRads 2 but no lesion. Urologist Surgeon says my PSA may be a reaction to the major surgery and will continue to go down. I asked for a PSMA PET, they agreed and the result is as follows.

Findings: HEAD/NECK: Dedicated brain imaging is not preformed. No radiotracer avid lymphadenopathy. CHEST: No suspicious pulmonary nodules or lymphadenopathy. Focal uptake in a non-enlarged left axillary lymph node likely related to isotope injection and possible extravasation at the injection site with increased vascular activity also noted in the left arm. ABDOMEN/PELVIS: Liver, pancreas, kidney, urinary bladder and bowel activity is physiologic which may obscure underlying lesions. Status post HoLEP procedure with diffuse low-level radiotracer activity within the remaining prostate tissue without dominant focal uptake. No radiotracer avid lymphadenopathy. SKELETON: No radiotracer avid osseous lesion. A 0.8 cm sclerotic focus in the left sacrum is favored to represent a bone island. PS.The surgeon and my original Urologist are yet to view or explain result to me.

I just wanted to share my experience and where we are at so far. I still have some drip drip but that is attributable to my laziness with the kegels. I am getting better anyhow.

Thanks and God Bless

Hello all, I deleted my account two weeks ago, but was active on this Reddit page for PC.

My Dad was diagnosed with PC in October. He is 60 years old, PSA 9.1, Gleason 4+4=8.

No metastatic disease, thank God.

He got surgery in November & has had 2 follow up PSA checks, both undetectable thank God.

After he got RALP, he was complaining about low energy, and being unable to do specific activities for awhile, that he previously was able to do. As a gym junkie he believed it had to do with his testosterone levels.

He asked for a testosterone level test for every PSA test (every 3 months).

For his first PSA test, alongside it came his testosterone levels..which was a WHOPPING 25! Dangerously low testosterone..similar numbers to someone who is literally on Hormone therapy. We were concerned, but Dad told me as long as he stayed as far away as possible from the Cancer, he didn’t care. Prostate Cancer is his priority & says he doesn’t feel as if he has THAT LOW of testosterone in his day to day life considering his levels are that low.

His 2nd PSA test, also undetectable. Testosterone levels somehow dropped even MORE! Now they are at a whopping 17! Still concerning.. so his Urologist gave him some Testosterone injections to take if he would like, my Dad said due to studies of Testosterone “fueling”, or essentially playing some factor, or role in Prostate Cancer, he doesn’t want to even take a risk. I told him I understood and we can find ways to deal with the low Testosterone. Maybe later on he can take it, unsure.

His health overall is pretty good, he’s in decent shape, goes to the gym and does what he can, 60 years old, his PSA is still undetectable after 2 tests, & I forgot to mention is pathology report was also good nothing bad on it at all besides his Gleason score (8) but negative margins & all invasions negative, however the testosterone is still concerning.

What could this be from? Does prostatectomy lower testosterone (don’t believe it does) could he have always had low testosterone without knowing? But THIS LOW?

Please let me know your guys thoughts, advise, or opinions. I am thankful for you all. God bless & thanks again. What should we do?

This post is for Black Men diagnosed with PC. Data shows that we are 2.5x likely to be diagnosed with PC & die from it then other groups. Reasons are irrelevant for this post, I only care about the bottom line. All information shared will be greatly appreciated.

1. What was your age at diagnosis? How old are you now?
2. What was your PSA when diagnosed?
3. What was the size(s) of your lesion(s)? Prostate Size?
4. What was your Gleason Scores? Any spread?
5. What was your selected treatment & why?
6. Any recurrence? How long after your initial treatment did your recurrence occur?
7. How are you doing now?
8. Anything that you would do different?

Hi, I just found this sub, my dad was recently diagnosed with advanced prostate cancer. It has spread to his hips. And I justbfound out he is refusing treatment. I'm sorry if this is morbid but how long can I expect for him to be around? He answers none of my questions and I'm just scared I'm going to lose him quicker than I realize. Sorry

So I'm curious as to how we all alleviate/deal with the constant or at least periodic fatigue that comes with PCa. For me exercise helps for a while but it comes back afterwards. I've tried melatonin for hopefully a better sleep but it's not working. I suspect fatigue is one of the biggest symptoms we all face with this. Yet, it's not really discussed. Sometimes just having the energy to do tasks around the house is lacking. It's a vicious cycle because things have to be done.

I am a 65 yr old PC survivor, I have learned so much from forums on Reddit. It shocks me to read post from 19-30 yr olds posting about not having erections, low T and prostate cancer. It seems these things are striking men younger and younger. When I read how much testosterone these men are taking it seems insane. They state they are trying to extend their lives or work out. It seems none of them have study this stuff. I had two blood clots and a local urologist that was giving me so much T my prostate surgeon told me I was lucky not to have had a heart attack. I’d like to know whether members of this forum noted these changes and how many of you feel about your cancer standard of care.

49 yr old M. PSA started out at 2.7 when I 33, have been monitoring them every year. They fluctuated up and down for years and they have never been below 1.9.

When I turned 45 I started checking my psa’s every 6 months. October 2023 they reached 4.1, doc said let’s wait 2 months to see if they go down. 2 months later they jumped to 4.71. 12/2023 referred to urologist and he did a DRE and felt a small nodule on left base of prostate.

Doc said let’s do a biopsy. I asked if we could do a MRI first and he said considering my psa’s and nodule via Dre he recommends doing a biopsy. Mid January 2024 biopsy performed no cancer.

Results:

Final Diagnosis A. Prostate, right, core biopsy: Patchy acute and chronic inflammation with atrophic changes No evidence of malignancy B. Prostate, left, core biopsy: Patchy acute and chronic inflammation with atrophic changes No evidence of malignancy

Got another opinion and the other urologist states they should have done a mri first and he suggest considering my psa’s over 4.0 weeks schedule a mri, however since I just did a biopsy we have to wait 2 months due to all the blood around my biopsy. 9 weeks later MPMRI performed (pelvis w/w/o contrast.

Findings: LESION 1: There is a T2 intermediate signal lenticular mass in the right anterior transition zone. This mass demonstrates marked associated restricted diffusion and a diffusion pattern different from the background transition zone. There is associated capsular bulging. Extraprostatic Extension (EPE) Grade: Grade 2, both capsular contact length ? 15 mm and capsular irregularity or bulge. Lesion PI-RADS Category: 5 - Clinically significant cancer is highly likely to be present.

External urethral sphincter: Normal. Seminal vesicles: Unremarkable. Neurovascular bundles: Unremarkable. Lymphadenopathy: There is no lymphadenopathy. Bones:No aggressive osseous lesion. Other pelvic organs: N/A

Scheduled a 2nd biopsy (different type) perineal core sample for 4/8. Insurance denied the biopsy twice, they said they don’t cover investigational procedures. So on Monday we are doing the other biopsy, (standard one) whatever it’s called. Same on I did back in January but this in the transitional zone.

Last week I decided to go get my psa’s checked again out of pocket and my psa’s have dropped to 4.4. Anyone ever had a situation like this specifically in the transitional zone of the prostate? I’ve read that bph can mimic prostate cancer and have also read that only 20 percent of prostate cancer is found in this area. I have also read the the capsular bulging could also be hemorrhaging from the previous biopsy that performed 9 weeks prior and could be mimicking a tumor.

This has been going on for 8 months now and I’m yet to have an accurate diagnoses.

We don’t have the pathology report back yet, but the surgeon said everything went well and that he found it easy to get the prostate out and reconnect everything. He thinks he got everything, which included some cancer at the base of the prostate.

Two or three days until we see the official pathology, but I feel such a huge sense of relief that the surgery over. I can not even describe how much better I feel.

My husband just turned 66, a 4+3, 4+3 Gleason, 7/13 biopsy cores positive and a heavy volume of cancer cells in those cores. From the start, scans only, I just wanted it out.

He was feeling a lot of discomfort in the first two or three hours after surgery, from the gas they use to expand the abdominal cavity so they have room to maneuver, but he was still coming in and out of consciousness, and I’m not sure how much of that he’ll even remember.

And then the catheter started getting uncomfortable, but he wanted to be up and walking around within two hours after surgery. Didn’t happen quite that fast, but he was taking laps around the ward by late afternoon and again when I texted him about 9 am, so I’d say he’s feeling better.

I was good until two days before his surgery, and then I woke up wanting to just cry and hang onto him all day. Couldn’t get close enough long enough.

Went to see my granddaughter instead. She’s 10 months old and delightful.

It was better Wednesday, just kept thinking come on, get it over with. We went to bed very early because we had to leave the house at 4:45 am, and I think we were both calm going into the day.

And now the surgery part is done, after months of tests and waiting and worrying.

I hope those of you who choose surgery soon feel the kind of relief I do today.