Prostate cancer. A useful resource.

[The general]

Remind him to check that the toilet door is locked when he does the enema thing. I forgot once and a young lady walked in at the crucial time. Ooops! Came out of there with a red face.

Not everyone needs an enema its a very individual thing i didnt need one , only had the red card once when scanner showed bowel too full so i had to have a dump and then it was ok after drinking more water , 2mins for RT ? Maybe just for the actual radiation ‘ shoot ‘ . The whole procedure for me was , undress in cubicle put on dressing gown wheel your clothes in with you to the treatment room , take off gown and then lay on treatment bed take down boxers , nurse arranges your legs so the machine can ‘ spot ‘ area they then leave room , scanner scans area for bowel (empty ) and bladder ( full ) if ok the linear machine rotates and gives you the radiation,while this is happening music is being played . From time to getting on treatment bed to the nurse coming back in it was roughly 15 mins .

 

[big bertha]

the radiotherapy is not an issue it only takes about 2 mins and is totally painless but you are there about 1,5 hours while you do the enema and drink some water. i dont know where your husband is having the rt but he wont be on his own there will be others there and it ends up like a club all talking about the same subject and having a laugh and having a beer when its over ps has he had his 3 little tattoos yet

He's taken me to radiotherapy before everyday for 30 days to same hospital. No enemas in my case as it was other end my tongue. He won't be joining any club it's just not him he'll be sitting alone reading.

 

[big bertha]

Not everyone needs an enema its a very individual thing i didnt need one , only had the red card once when scanner showed bowel too full so i had to have a dump and then it was ok after drinking more water , 2mins for RT ? Maybe just for the actual radiation ‘ shoot ‘ . The whole procedure for me was , undress in cubicle put on dressing gown wheel your clothes in with you to the treatment room , take off gown and then lay on treatment bed take down boxers , nurse arranges your legs so the machine can ‘ spot ‘ area they then leave room , scanner scans area for bowel (empty ) and bladder ( full ) if ok the linear machine rotates and gives you the radiation,while this is happening music is being played . From time to getting on treatment bed to the nurse coming back in it was roughly 15 mins .

So you don't need a plastic cage thingy moulded to the shape of your nether regions. I had one that covered my whole face.

 

[Nirvanauk]

I certainly didn’t and I don’t know anyone that did. Hope that helps.

 

[DavidG58]

Hubby had his biopsy so will get results in 3 weeks, we now know it's cancer as CT showed an involvement of a lymph node but good news is it has not spread to bones. Seemingly he can't have a Gleason score as already been put on Hormone treatment. We're upbeat about it. I reckon it'll be radiotherapy.

It’s odd that hubbies treatment is in a totally different order to mine and others

My consultant rang me after my CT scan to say I almost certainly had cancer from what he could see but he said he couldn’t confirm without a biopsy, so I went four weeks through Christmas 23 wondering

Biopsy mid Jan, results 7 days later (positive) bone scan following day hormone treatment started with tablets a few weeks later

My treatment was RT, enema first thing every morning before leaving home, bit scary till first one confirmed very effective first time

Staying hydrated was my problem at pre treatment scans, but that was my wake up call, resolved by taking a glass of water every wee overnight, only had one day where I had to drink more after pre RT scan . Twice I needed a wee just before going in, couldn’t hold on any longer both times bladder still full enough

It quickly becomes a routine and the same faces will help even if not engaged with, we have a WhatsApp group with 5 of us regularly updating each other

Best of luck to him, he might still have a while to wait, my consultant starts RT 6 months after hormone treatment starts

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[gus-lopez]

I see Finasteride, a drug commonly prescribed for prostate problems, is in the news today. Seems it’s also used for hair loss but can have some serious undesirable side-effects.

That is on gov.uk site back in april 2024

 

[big bertha]

It’s odd that hubbies treatment is in a totally different order to mine and others

My consultant rang me after my CT scan to say I almost certainly had cancer from what he could see but he said he couldn’t confirm without a biopsy, so I went four weeks through Christmas 23 wondering

Biopsy mid Jan, results 7 days later (positive) bone scan following day hormone treatment started with tablets a few weeks later

My treatment was RT, enema first thing every morning before leaving home, bit scary till first one confirmed very effective first time

Staying hydrated was my problem at pre treatment scans, but that was my wake up call, resolved by taking a glass of water every wee overnight, only had one day where I had to drink more after pre RT scan . Twice I needed a wee just before going in, couldn’t hold on any longer both times bladder still full enough

It quickly becomes a routine and the same faces will help even if not engaged with, we have a WhatsApp group with 5 of us regularly updating each other

Best of luck to him, he might still have a while to wait, my consultant starts RT 6 months after hormone treatment starts

We're in Scotland we do things back to front lol. I was surprised he was put on hormones before a positive cancer diagnosis.
His PSA was high but his Dre only showed an enlarged prostate. Even his urination frequency isn't that bad he doesn't always have to go in the night. Everything has been very quick and can't fault our NHS.

 

[DavidG58]

Even his urination frequency isn't that bad he doesn't always have to go in the night

I had no symptoms at all either, my overnight weeing went to bits post biopsy 12 months ago , went from rarely up to typically 6-8 times per night

That is now under better control with meds

 

[big bertha]

I had no symptoms at all either, my overnight weeing went to bits post biopsy 12 months ago , went from rarely up to typically 6-8 times per night

That is now under better control with meds

I'll pass that on already told him about enemas.Did you find you were able to drive yourself back and forward to radiotherapy or were you tired. I gave up my licence at 70 but daughter will make herself available if necessary, it's 45 minute drive into Edinburgh.

 

[The general]

So you don't need a plastic cage thingy moulded to the shape of your nether regions. I had one that covered my whole face.

No ,the beam locates the tattoo marks. I dont want to comment to much i am not an oncologist / radiologist but isnt the face mask used for other cancers ?

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[The general]

It quickly becomes a routine and the same faces will help even if not engaged with, we have a WhatsApp group with 5 of us regularly updating each other

Oh yes it helps a lot same faces everyday some finishing course some just starting ,i found 20 fractions went very quick !

 

[DavidG58]

I'll pass that on already told him about enemas.Did you find you were able to drive yourself back and forward to radiotherapy or were you tired. I gave up my licence at 70 but daughter will make herself available if necessary, it's 45 minute drive into Edinburgh.

I found that even in our small group we all reacted a bit differently , but mostly ended up with the same issues eventually

I would have been fine to drive myself and did a couple of times , our biggest issue was parking so Bev came so I could bail out if needed and leave her to park

My tiredness didn’t really cut in till after my RT and I still get tired very quickly with very little effort and I finished RT three months ago

 

[The general]

Did you find you were able to drive yourself back and forward to radiotherapy or were you tired

Obviously depends distance but take a pee bottle /towel and get a toilet card ,note where toilets are on route . In the last 10 fractions i had to pull in twice on way home to pee and that was only 2miles , BUT everyone is different

 

[big bertha]

Obviously depends distance but take a pee bottle /towel and get a toilet card ,note where toilets are on route . In the last 10 fractions i had to pull in twice on way home to pee and that was only 2miles , BUT everyone is different

We could take our 5mtre camper but carpark a bit tight.

 

[The general]

, our biggest issue was parking

Yes can be stressful ,Southampton general gives a flat rate for parking cause you can be there sometime ie with the machine breaks down

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[big bertha]

I found that even in our small group we all reacted a bit differently , but mostly ended up with the same issues eventually

I would have been fine to drive myself and did a couple of times , our biggest issue was parking so Bev came so I could bail out if needed and leave her to park

My tiredness didn’t really cut in till after my RT and I still get tired very quickly with very little effort and I finished RT three months ago

There was a special oncology carpark 14 years ago so hopefully still in use as we always had a place.

 

[Speve]

Hi I thought I would give a brief resume of my problem how it started and what was done.
Originally went to GP re a minor incontinence problem doc referred me for MRI of lower back as he thought that may be that was the trouble nothing showed up on MRI except that my bladder was enlarged and full even after I thought I had emptied it.
I was having what I thought was a resumption of an old problem of a stricture in my urethra however on investigation was found still had stricture but suggested I catheterise myself regularly to keep tubes clear after doing this for roughly four months with numerous water infections I was sent back to my specialist who said he needed to do TURP procedure which widens the urethra and take a bit of your Prostate away on having this done in July 2024 I was called in to say that the biopsy showed cancer and I would need a further biopsy in January of this year giving me time to recover from my TURP .I was given an MRI of my prostate which showed a leasion so biopsy will be done tomorrow. Prior to my TURP my PSA was 11.5 and since has reduced to 5.5 and in Sept 24 it was 5.
The TURP did not solve my peeing problems and still have do catheterisation three times a day to prevent my kidneys from being swamped as my bladder is twice the size it should be and I am retaining between 500/700mls each time.
I am told that my cancer may be non aggressive and if biopsy has good results I may not even need any treatment but I will be monitored on a regular basis.
I’m hoping that’s the case and that I can carry on nearly as normal but it’s the not knowing that is difficult but I’m trying to be positive about this and fingers crossed.
I would never have known about the cancer had I not had the TURP, I consider myself lucky that I have had a great urology team dealing with me at Salisbury District Hospital and they are still on the case.
Thanks for reading this.

 

[rod_vw]

From my experience I had no need for the enema, I used one for the first treatment and confirmed that it was not necessary. I did keep up using them for a few days into the treatment.
As I am less than three quarters of an hour from the hospital and found that my bladder worked perfectly after taking on 500ml of water just before leaving home. The treatment was almost always later than scheduled but only three times during twenty sessions did it cause a problem.
The actual treatment time in the treatment room was, in my case, around five to eight minutes, perhaps eased by arriving wearing shorts and boxers so never having to bother with a changing cubicle or a gown.
I liked comments above about the almost club atmosphere of the small RT waiting room. I walked in on the first morning and said to four or so others "Good morning, I'm the new boy" (I'm no 'boy' as I was 75 at the time). That broke the ice and from that point we all exchanged jokes, stories and treatment experiences whilst not all being the same gender or obviously not being treated for the same disease. The best part of this was becoming friends with fellow suffers.

Post treatment I must have been lucky as I have not suffered from tiredness and apart from minor bowel problems and the hot flushes from the hormone therapy I seem to have escaped the problems that some others report.

big bertha if you are a member of the Macmillan Prostate Cancer Forum (where my forum name is Osca2023) you can read my profile which is written as a diary of my journey through PC from diagnosis to date. If you or your other half have not joined that forum I would suggest that you do as there is a huge amount of support available there.

Best wishes to you both,

Rod

 

[big bertha]

Hi I thought I would give a brief resume of my problem how it started and what was done.
Originally went to GP re a minor incontinence problem doc referred me for MRI of lower back as he thought that may be that was the trouble nothing showed up on MRI except that my bladder was enlarged and full even after I thought I had emptied it.
I was having what I thought was a resumption of an old problem of a stricture in my urethra however on investigation was found still had stricture but suggested I catheterise myself regularly to keep tubes clear after doing this for roughly four months with numerous water infections I was sent back to my specialist who said he needed to do TURP procedure which widens the urethra and take a bit of your Prostate away on having this done in July 2024 I was called in to say that the biopsy showed cancer and I would need a further biopsy in January of this year giving me time to recover from my TURP .I was given an MRI of my prostate which showed a leasion so biopsy will be done tomorrow. Prior to my TURP my PSA was 11.5 and since has reduced to 5.5 and in Sept 24 it was 5.
The TURP did not solve my peeing problems and still have do catheterisation three times a day to prevent my kidneys from being swamped as my bladder is twice the size it should be and I am retaining between 500/700mls each time.
I am told that my cancer may be non aggressive and if biopsy has good results I may not even need any treatment but I will be monitored on a regular basis.
I’m hoping that’s the case and that I can carry on nearly as normal but it’s the not knowing that is difficult but I’m trying to be positive about this and fingers crossed.
I would never have known about the cancer had I not had the TURP, I consider myself lucky that I have had a great urology team dealing with me at Salisbury District Hospital and they are still on the case.
Thanks for reading this.

Thank you for your story hopefully all goes well tomorrow.

 

[big bertha]

From my experience I had no need for the enema, I used one for the first treatment and confirmed that it was not necessary. I did keep up using them for a few days into the treatment.
As I am less than three quarters of an hour from the hospital and found that my bladder worked perfectly after taking on 500ml of water just before leaving home. The treatment was almost always later than scheduled but only three times during twenty sessions did it cause a problem.
The actual treatment time in the treatment room was, in my case, around five to eight minutes, perhaps eased by arriving wearing shorts and boxers so never having to bother with a changing cubicle or a gown.
I liked comments above about the almost club atmosphere of the small RT waiting room. I walked in on the first morning and said to four or so others "Good morning, I'm the new boy" (I'm no 'boy' as I was 75 at the time). That broke the ice and from that point we all exchanged jokes, stories and treatment experiences whilst not all being the same gender or obviously not being treated for the same disease. The best part of this was becoming friends with fellow suffers.

Post treatment I must have been lucky as I have not suffered from tiredness and apart from minor bowel problems and the hot flushes from the hormone therapy I seem to have escaped the problems that some others report.

big bertha if you are a member of the Macmillan Prostate Cancer Forum (where my forum name is Osca2023) you can read my profile which is written as a diary of my journey through PC from diagnosis to date. If you or your other half have not joined that forum I would suggest that you do as there is a huge amount of support available there.

Best wishes to you both,

Rod

I haven't joined but I do read it often. My OH is not a people person no small talk whereas I would have everyones life story.

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[big bertha]

Thank you guys for being helpful and telling your stories.

 

[Spara4042]

I'll pass that on already told him about enemas.Did you find you were able to drive yourself back and forward to radiotherapy or were you tired. I gave up my licence at 70 but daughter will make herself available if necessary, it's 45 minute drive into Edinburgh.

I drove myself to & from treatment, similar sort of distance as you.
As I was on a clinical trial, I only had 5 treatments over 12 days but never noticed any tiredness after each session.
I took the opportunity to empty my bladder before leaving hospital & was able to get home without stopping.
Hope all goes well with the treatment.