That walnut sized organ: the Prostate

Justjens

Been on the oral hormone therapy, with a few steroids thrown in for good measure, for eight months now. Down to blood tests and oncology appointments every two months, potassium levels are holding their own so they are happy, lucky them. Ask them anything else and the default answer is 'I don't know' or 'Go to your GP', dread the place, passing the buck.

Tired? That's an understatement, can't sleep when I want to and want to sleep when I can't. If I wake to pee, which I invariably do now, more often than not I can't get back to sleep. Wide awake, good thoughts or bad, no differance. Asked oncology if there was anything I could do, guess what? 'Go to my GP'!!

Two years since diagnosis, PSA undetectable, mental strain taking it's toll though, feel it's a constant battle, waiting hours in oncology to be asked the same questions but no real answers to mine makes it worse. My partner can see it in me, poor woman putting up with this, we keep each other laughing.

I've seen a counsellor and it's definitely helped.

Keeping the business on the road is getting more and more difficult, find decision making the hardest part. I can manage the necessary but anything after that is beyond me, no energy after a few hours physical work. A good friend and a nephew stand up to be counted.

Discovered why my referral didn't go through the first time in Feb 23, he sends them by Fax! Who sends a Fax anymore? For a high risk cancer patient there was no follow up that it was received, little consolation but I've since discovered I'm not the only one. It would have taken less than a minute to hand deliver it and be back at their desk.

Had to go through Freedom of Info to access the letter from my file, another layer of bureaucracy I could have done without but now I have it.

Solicitor said suck it up, wasting money trying to get an answer as I'd get nowhere and might compromise any further treatment were it to become necessary in the future. I'll be writing my own letter, I'll be seeing the arrogant pr!ck again in a couple of months, say my piece then too.

So it's onwards and upwards, I'll keep taking the horse supositories and getting the hormone injections, seems like it's working…..and keep a positive frame of mind!

Will Graham

https://www.boards.ie/discussion/comment/121232329#Comment_121232329

I'm not sure I see the connection between that song and a DRE exam?

Calahonda52

https://www.boards.ie/discussion/comment/122296031#Comment_122296031

Take a walk on the wild side😀

Bob_Average

Hi all,

Time for another update from me.

I had my radiation sessions during February, this was 4 weeks (20 sessions) Monday to Friday at St. Lukes in Rathgar. Lovely hospital, can't say enough nice things about them.

I was lucky in that I didn't really get any side-effects (beyond tiredness) until the final week, but that week was like being run over by a truck.

As part of the routine prep before each radiation session, I had to taken an enema gel, which I had to squeeze into my backside from a little tube with a pointy nozzle. This was to ensure the bowel would be empty. But the instructions were to wait 30 minutes after inserting the stuff before going to the toilet, and those 30 minutes each day were a trial of patience, as the gel made you want to go immediately and urgently. Walking around helped, so if at some stage you encountered a man walking rapidly around the grounds of St. Lukes swearing under his breath, that was me.

Then of course, drinking a lot to fill the bladder and holding it full - that was easy some days, and difficult on others. By the time I was on the radiation table I would be desperate to go, and had to lie very still for 15 minutes. I developed some mental routines (thinking through sequences of items on lists of things) to help me through that.

As I said, I didn't have much in the way of side-effects until the last week. At that point my bottom end became fairly angry - and I can't say I blame it - and to be honest it was hard to tell what was being caused by the radiation treatment, and what was the result of constant enemas. But by that stage I could no longer tell when I needed to empty my bowels, I just felt a raging need all of the time, no matter if there was anything there or not. This slowly went away over a period of about 4 weeks during March.

Likewise, I needed to pee all the time, and would wake up six times a night to pee. This has gone away more slowly, I'd say I was almost back to normal by the end of May.

It hurt to sit down for the first few weeks, this too faded away over about 8 weeks.

I had my second hormone injection in April (it was due in March but I ended up in hospital with pnuemonia at the time it was due). The first injection had given me only mild hot flushes, but the second seems to have impacted me more. The flushes are mild but are more frequent - about 10-12 a day.

My energy levels were impacted badly, and have recovered slowly - the pnuemonia didn't help and really knocked me back. I would say I am at about 70% of my previous level of stamina, but I do sometimes get sudden incidents of fatigue and brain fog, but less than I did a couple of months ago.

PSA currently 0.03 and they say undetectable, so it's hopeful, but I've seen too many other people where it went away and came back to be complacent.

I'm just happy that I'm here, and that the impact on my life is far, far less than it could have been.

Bob

Calahonda52

Bob,

Thank you so much for posting this unedited description of the ray gun sessions.

As for the 0.03, here are my nerdy numbers, having been zero from the surgery in May 2016 so didn't make the 5 years

Am going to get tested annually for the next one

Dogsdodogsstuff

Never thought of coming here but there’s some great informaction.

I got diagnosed 3+3 Gleason , but when I heard it was kind of “the good cancer” (or that’s how I interpreted it) I sort of switched off. Two biopsies were as awful an experience as I had imagined they would be.

Monitor approach , no treatment but told I may need some in future.

I even have a book on it that I’ve sort of read but it’s quite technical so find it hard to follow. I’m told symptoms don’t really show and urologist won’t really chat about the ones I get (as presumably he only wants to talk cancer related stuff).

Sorry if this is not meant for here but do people get any Prostatitis symptoms or prostate symptoms ? I regularly have a pain , like a dull ache where I feel the prostate is located , testicle pain on one side (that I believe can be referred pain) and pain just below my stomach where a small hernia is located. Now I have 2 hernias but there are small and I was told they shouldn’t really be causing the pain I’m getting (which is near where one hernia is).

Sometimes after sex, I can have frequency to goto toilet and a sort of uncomfortable pain out front that can last for a few mins to an hour. Again feels like it’s related to the prostate in some form.

I guess I’m just looking to see if anybody has any similar story. I’ve been to specialists/GP, had scans etc, so I’m confident it’s not serious, moreso really bothersome and frustrating.

Calahonda52

Can't add anything here re pain as I never had any symptoms.

To repeat the question i was aked early on in the game:

When you pis, do you hit the wall or pis down your leg

3+3 …..

One of the key messages that I have for folk here is that 3+3 is what they found in the biopsy, which is essentially like throwing darts: D20 might show b3+3 but worse could be lurking in D5

Not being harsh here but you heard what you wanted to hear, been there. done that.

What age are you and how did you arrive at biopsies?

What is your PSA tracking like: two key number, the absolute figure and the rate of change

IMHO, I would be thinking about surgery

https://www.hopkinsmedicine.org/news/articles/2022/11/gleason-336-is-not-not-cancer

Dogsdodogsstuff

https://www.boards.ie/discussion/comment/122562497#Comment_122562497

Im mid 40s, which is part of the reason I’ve been advised against testament. The way it was explained to me was that I could be 75 and it’s not progressed anymore or I may need some sort of treatment in couple of years. When I say “the good cancer” I meant the sample they got appeared to be one that is the slower growth one and at least I’m in the system and being monitored.

They didn’t say “you are all good”, but what they did say is that after 2 biopsies and having PSAs that can be very low and maybe as high as 2, they feel a monitor approach is best. One of the doctors said that my results wouldn’t even be classed cancer in USA, although that didn’t really help.

It was only found completely by chance, which is why I feel lucky. I had been complaining of the symptoms I mentioned during a general health checkup privately and they decided to do a scan purely for that reason. Something showed up on the scan so I was referred to urologist.

At urologist session, he said my PSA was low and usually he’d send me on my way but the thing showing up on my scan had to be checked. He was nearly certain it would be nothing: They checked it and one sample had some cancer. They did another biopsy and found nothing anywhere else.

This was my initial biopsy:

A) Transperineal prostatic biopsy, target:

Three cores of prostate tissue showing a focal ASAP the appearances of which are most consistent with high grade PIN atypia.

B) Transperineal prostatic biopsy, left peripheral:

One prostate core showing an ASAP, the appearances of which are suspicious for prostatic adenocarcinoma.

C) Transperineal prostatic biopsy, left transition:

Prostatic adenocarcinoma, Gleason grade 3+3, score 6/10, (Grade group 1), involves 1 of 1 cores and 5% of tissue submitted. No perineural invasion seen.

Probably need to get my psa checked soon as I’m due back with urologist in month or two. Can’t remember my results but I don’t think they are ever much north of 2

Think my last PSA was January and it was2.58, am I supposed to get them more frequently ?

Any tips ; advice or questions you can suggest would be appreciated. I never really know what to ask the specialist when discussing this.

Calahonda52

Really cant add any more here as would be straying into med advice which I am not going to do beyond what I have said already

Iff I read your post correctly they took 4 samples

from the same link as before

A typical biopsy collects about 12 core samples from different areas of the prostate

Again, What is your PSA tracking like: two key numbers, the absolute figure and the rate of change.

Not being harsh here but these are key numbers so ask yourself: are you in semi denial by not being on top of this data and saying you think it was….

I would be getting a PSA test done every 6 months.

What about getting a MRI, I had one before the surgery, confirmed the size of the cancer.

beachhead

For anyone who has doubts about their diagnosis-consultant not answering all questions,continuing pain in the abdominal area,other concerns,a PET scan could be helpful.More comprehensive than an MRI.One poster mentioned 10-12 hot flushes per day(sweats at night time?).A course of Venlafex,(it is marketed as an anti depressant) but can/might help some with hot flushes/night sweats

Dogsdodogsstuff

https://www.boards.ie/discussion/comment/122565037#Comment_122565037

I had an MRI originally at a health check because of slightly elevated PSA (2.5) and pain in that area , that showed a dark spot that led to the biopsy.

When I got the diagnosis I pushed hard for answers and understanding. I had a claim in for critical illness benefit with a life office and discussed my case with them aswell (I work in insurance).

When I say “good cancer”, it’s my summary or layman take from what they told me, probably because I a more often then not, overly pessimistic and in this case wanted to try and be more optimistic. I get things can change but for now it seems like the bits they found are slow growing.

I’ve an appointment in November, didn’t think of getting psa in summer so maybe I will get psa now and again just before my consultation.

Since I’ve kind of always had urinary , stomach and IBS issues, it’s quite hard to know what is relating to what. Also have other medical conditions that make it hard to work out what.

In terms of biopsy, I’m Pretty sure they took a lot of samples. I remember the crunch’s both times and it didn’t feel like just 4 times! How can anybody have a biopsy without some meds ? My body is overly sensitive as it is (chronic migraines) but even with the medicine I felt a lot of pain during the procedure. Only found out the second biopsy that I wasn’t supposed to be pissing blood for over a month after the first one!!!

The second biopsy confused the specialist performing it. She asked me why I was having it done. From taking with specialist and insurance company , my first biopsy showed microscopic cancer that was technically cancer (this is how it was explained). The second biopsy was to see if it was anywhere else and to rule out it being worse (or something to that effect).

This is where the “you kind of have cancer but it’s really not that bad” narrative has come from.

Dogsdodogsstuff

https://www.boards.ie/discussion/comment/122565352#Comment_122565352

ha, no way, I get times where I just start getting really hot , sweat with my heart beating fast. I find them annoying but wouldn’t want to take any meds unless there’s some other thing to be concerned about them ?

I’m with my doctors a few times a year so I don’t bury my head like some. The problem for me is that there is quite often a lot of things going on physically and it’s been hard to get answers. Some physical stuff might be a somewhat related to mental health stuff.

When I’m with specialists , if my wife isn’t with me , I can forget alot or what they tell me.

I’ve been diagnosed with chronic migraines (neurologist), take regular injections and expensive medicine for that. But part of it is simply that my whole body is hyper sensitive to touch, sight , sound , smell etc. Some of my urinary stuff and pain can be caused by the migraine apparently.

I’ve had dull ache on/off for a long time where the prostate resides. I’ve had chronic testicle pain. Chronic pain where they say one of my hernia resides. But no putting together of what is causing what. Went to two specialists about the hernias and both said it’s odd to have the pain as the hernias are small. So what do I do? I have pain where a hernia is located , specialists saying it shouldn’t be painful?

My testicle pain could and probably is referred pain but there doesn’t appear to be any treatment for further investigations. I’ve had ultrasounds and they seem to be fine. Pain in my side/back could suggest Prostatitis (I have most of the other symptoms of Prostatitis) but when I goto the cancer urologist he says it’s a complex thing. Again, I don’t know if I’m supposed to try and see a urologist separately , it can be hard to know what to do when I’ve spit of moving parts.

I’m not looking for medical advice from anybody. I see my doctor regularly and always run things by professionals if unsure. My problem has been that there’s been so much continually going on with me, it’s been hard to pin down what pain I’d be caused by what condition.

Only sharing my experience in case anybody else had something similar or even a clearer path to get more definitive answers.

Calahonda52

This bloke is only 48

Am posting this here as a prompt for

1: dont ignore symptoms.

{ to repeat a question I was was asked when I said what do you mean by symptoms:

are you hitting the wall or pi$$ing down your leg}

Get the PSA test done, and for added peace of mind and especially comfort😎, the DRI annually

So on your bike

https://www.bbc.com/news/articles/cj4dr9xdxgro

Calahonda52

https://www.rte.ie/brainstorm/2024/1111/1480273-prostate-cancer-risks-signs-symptons-mri-scan/

JupiterKid

I'll be doing my 4th Dickie Dip tomorrow with several hundred other brave lads (some of whom are prostate cancer survivors) to raise funds for prostate cancer care via the Mater Foundation. 🥶🌊🌊💪💪

https://www.materfoundation.ie/event/dickiedip/

Wish me luck, lads! 😁

Bob_Average

Haven't seen this mentioned here, but there is a really good series on BBC Radio 4 (now available as a podcast) called "John Holmes Says The C Word"

John (comedian, formerly on The Now Show and former BBC 6 Music presenter) talks through his progression from diagnosis with Prostate cancer through the treatment to afterwards. He talks to other men who have made the same journey, and some with other cancers too.

There is an episode for each stage of the journey - investigation, biopsy & diagnosis, choosing treatment, tell other people, undergoing treatment, and Afterwards.

Apart from being very honest and informative, it is quite funny too. It's fairly explicit, and definitely would have helped prepared me if it had been around before my treatment rather than afterwards.

Fascinating to see that both John and Stephen Fry had pretty much the same prostate biopsy experience that I did :-)

I would strongly recommend it to anyone on here.

Bob

Calahonda52

Another prompt for vigilance and routine testing.

A pity its silent on the symptoms, if anybody find them pls post them

https://www.rte.ie/sport/motorsport/2024/1212/1486113-jordan-reveals-aggressive-cancer-diagnosis/

Silent Running

I just found this thread today, I thought I'd add my experience.

I was having blood tests every 6 months for chronic illness monitoring. At the start of this process, I asked the nurse to include PSA in the test. Her answer was "sure why would you want that?" I politely asked her to tick the damn box.

Fast forward a few years and I'm answering a call from my doc to come in to see him due to the results from the bloods. I knew that second what he wanted to see me for, and he gave me a gentle DRE. All seemed OK but he referred me to a urologist, who sent me for an MRI to be sure. The MRI showed an enlarged prostate, but little else. He was on the fence to do a biopsy, so I pushed him over and the trans perineal biopsy was done in January of this year. It was a breeze and reasonably pain free.

When I met the urologist for the results in February, I was already convinced that I had cancer, but was hoping for BPH. When I heard the word cancer, I still went a bit numb. Gleason was 3+4 but 8 of the 12 cores found a lot of cancer. Being fully convinced that the biopsy would reveal cancer, I had been furiously reading up on my options and had decided on surgery. I just wanted the cancer out of me. Killing it in situ was out of the question in my mind. Both of my parents had died from cancer at around the age I was then (68) and I wanted it gone.

I was referred to a Surgeon for a consult and he did a REAL DRE! I asked him to check my tonsils as he was up that way. This was in March this year. He checked me over and decided that I was a candidate for robot assisted surgery. He said that his calendar was full up to the end of May and that he'll put me on his list. A couple of weeks later I got a letter to attend CUH for the surgery in the middle of April. I didn't argue! The anesthetist met with me on the way into the operation and offered me an epidural. He said that he has found that it puts the whole area asleep and aids recovery. I agreed.

Surgery went well. I was in early in the day and was walking around the ward that afternoon with a catheter and a bag of pee. I was again pain free, but they insisted on giving me pain relief. I was released 2 days after the operation and the catheter was removed 10 days later. That was fun! The woman that removed it was obviously a keen gardener with a pull start lawnmower!

The pathology on the prostate showed a blemish on the capsule. The bastard was trying to escape! A PSA test at 3 months was <0.006 and on December 2nd was again <0.006. The relief is incredible and long may it stay at that level!

I've suffered very little incontinence and was pad free when I plucked up the confidence to go bareback. ED is another matter, but I'm working on that. Using the penis pump doesn't help much. As soon as the suction is released, it's back to flacid Freddy. Work in progress.

I was thinking recently what would have become of me if I hadn't insisted on adding the PSA to the blood tests. I have been symptom free throughout. To repeat what others have said above: get tested… insist on it if necessary.

Just as a footnote. Expect to lose all dignity. It's the first real casualty.

Calahonda52

No longer Silent!

Worth repeating from your post

I was thinking recently what would have become of me if I hadn't insisted on adding the PSA to the blood tests. I have been symptom free throughout. To repeat what others have said above: get tested… insist on it if necessary. 

Just as a footnote. Expect to lose all dignity. It's the first real casualty.

All in your head to be honest when the Big C calls

Silent Running

I dunno, it's a bit strange when a young woman is staring at your bits and telling you to pull your penis up. I suppose she's used to it as a physiotherapist. I wasn't used to it… at all.

Good username btw, I lived 50km from there for 12 years.

Dogsdodogsstuff

https://www.boards.ie/discussion/comment/122951912#Comment_122951912

I’ve had 2 TP biopsies and neither were pain free, quite the opposite, think I’ve just a sensitive body to be honest!!!

Calahonda52

https://www.boards.ie/discussion/comment/122951912#Comment_122951912

Didn't have any of that, as relevant nerves were cut

Found this on France 24: screen shot only😂😂

Keep well and thanks for posting

Justjens

Bit of a milestone yesterday, last of my six 6 monthly slow release hormone injections….it's also three years since my MRI and when I started this journey.

Now roll on October and hopefully I'll be finished these bastarding steroids and oral hormones, and be rid of the side affects, bloody things are as big as a horse sepository, only I have to swallow them.

Calahonda52

Eddie Jordan RIP: from RTE website

It was on that platform late last year that he opened up about the health issues he was confronting having been diagnosed with an "aggressive" form of cancer.

As was his way, he ensured it came with valuable advice: "Go and get tested, because in life you've got chances and there is so much medical advice out there and so many things that you can do to extend your lifetime. Go and do it."

https://www.rte.ie/sport/motorsport/2024/1212/1486113-jordan-reveals-aggressive-cancer-diagnosis/

Calahonda52

My own PSA number unchanged from last year: 0.13

Heighway61

https://www.boards.ie/discussion/comment/123289896#Comment_123289896

Mine is rising a bit too fast… .14 to .2 in 6 weeks.

Calahonda52

https://www.boards.ie/discussion/comment/123303507#Comment_123303507

Go again, you didn't have a DRE by any chance

Heighway61

https://www.boards.ie/discussion/comment/123304379#Comment_123304379

I'm 7 years post op. 0.2 should have been the signal to start radiation but it's likely I'm not suitable. Further treatment pushed out to 0.5.

Calahonda52

Thanks,

early on after my PSA started rising, Nov 2021, I penned a post here about radiation and the level at which it might start as per two consultants. You might scroll up if interested.

In summary one wanted to start there and then, the other said wait as they don't know where it is , they assume its the surgical bed.

What did they say about possible side effects and expected results from the ray gun?

Personally, I have no interest in being the 1% that end up with a worse quality of life, but its your call.

Calahonda52

Lions great McGeechan diagnosed with prostate cancer

https://www.bbc.com/sport/rugby-union/articles/c2lknq4d21ko

"I don't want to make a big thing of it, but it is important to get the message out about urging people to go and get tested," he said.

"I said that to our players here, to make sure they get themselves tested.

[My rinse and repeat emphasis]

As an aside, had the surgery 9 years ago this month.

As mentioned earlier, the test extended my life, no test would have been dead by end 2017 max.