Prostate cancer. A useful resource.

[rod_vw]

My RT hasn’t started but I can’t get travel insurance , well I can but with virtually every permutation of medical issue excluded

Hoping it will change after RT

DavidG58 have you looked on the MacMillan Cancer Forum for travel insurance advice?

 

[rod_vw]

I'm just going with my ghic card

Yes I may well have to do the same, but I'll see what is available when my RT has ended.

 

[DavidG58]

DavidG58 have you looked on the MacMillan Cancer Forum for travel insurance advice?

I worked my way through a few on the list with sane result no cover while waiting for treatment , even worse they wouldn’t cover existing conditions , I really couldn’t understand that , as I take medication for high blood pressure it was excluding all related conditions heart attach stroke etc as well as cancer related

I might risk GHIC as well but it’s another worry

 

[DavidG58]

I now have a load of appointments, I am on top treatment in the trial, higher dose plus lymph nodes

I will be having a new MRI later this month, tattoos for targeting with an option to consider for insert pellets for better targeting of RT, procedure similar to biopsy. Optional but surgeon would have them if he had the treatment so I think that’s decision made

RT to start Weds 18/9 I thought it would start on Monday but apparently Sheffield always starts on a Wednesday to give an extra weekend off

To be followed by various follow ups, mostly telephone , so plans for a February get away can start

 

[rod_vw]

I now have a load of appointments, I am on top treatment in the trial, higher dose plus lymph nodes

I will be having a new MRI later this month, tattoos for targeting with an option to consider for insert pellets for better targeting of RT, procedure similar to biopsy. Optional but surgeon would have them if he had the treatment so I think that’s decision made

RT to start Weds 18/9 I thought it would start on Monday but apparently Sheffield always starts on a Wednesday to give an extra weekend off

To be followed by various follow ups, mostly telephone , so plans for a February get away can start

The very best of luck with the treatment David .

Ironically my RT started on a Wednesday like a few others at Shrewsbury but I believe it is not always the case there. I was grateful that I had an extra weekend although with hindsight there have been no side effects to rest from so it didn't concern me.

If your RT waiting room and its fellow patients as as relaxed and humorous as the one at Shrewsbury you will have a very easy time during your treatment. The camaraderie and friendship that I have received there has been wonderful, not to mention the jokes that have been flowing. Me and two fellow patients were caught out with bladders not full enough last Thursday when the radiotherapy team were trying to bring their schedule somewhat earlier that the previous days. Needless to say it didn't work, three 'Red Cards' were issued!

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[pagey]

Had 2 red cards 1 for bladder too full and 1 for gas ,I got dressed and went for a walk round St pauls to get rid of the gas the other one was easier

 

[DavidG58]

I forgot to ask today, roughly how long does each RT treatment take , I can ask my cancer team but you lot will be quicker

 

[Nirvanauk]

I forgot to ask today, roughly how long does each RT treatment take , I can ask my cancer team but you lot will be quicker

Once you are in then 5 minutes tops but often waiting around, that’s when the bladder feels like bursting.

 

[rod_vw]

I forgot to ask today, roughly how long does each RT treatment take , I can ask my cancer team but you lot will be quicker

I go into the RT room wearing shorts & loose trainers, whilst I lose both of those they confirm my DoB and address, I then climb on the 'sun bed' lowering underwear enough to reveal the three tattoos and have an ultrasound check of bladder contents. If OK the team align me manually to the tattoos etc. with alignment lasers, make their excuses leave the room. There is then what I understand to be a CT imaging scan which they receive in the office and overlay on the original planning CT scan then if necessary remotely adjust the position of the 'sun bed'. Following this is the actual RT scan which takes the machine head less than a minute to rotate around my body.
Once this has completed the machine stops and the team return to the room, lower the 'sun bed' down and let me climb down.
All told the process takes no more than ten minutes, normally less.

Next destination the toilet!

I hope that this gives you a basic idea of the process, other hospitals may of course be different.

 

[pagey]

Good description our m/c went round twice first was an alignment
and the second was the rt

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[Oldrat]

It would have taken much longer of there were German towels already on the sunbeds

 

[Dutch 68]

I am only a youngster, but my rising psa in combination with a severely bad family history meant that I just had a MRI, unfortunately they have seen something which they don’t like so a biopsy is next,
With my history of my body not reacting very well to sedation, as in needing much more then average and still being in too much pain, what are people’s experiences please, should you opt next time for general anaesthesia or local anaesthesia ?
All opinions welcome please.

 

[Oldrat]

I had my biopsies in 2019, they went through my perineum, not my backside.

I had a local anaesthetic and managed ok.

It was like having an old fashioned spud gun held against you when the trigger is pulled, not too painful but quite a thud.

On a scale of 1-10, 10 being the worst, it was about 3 or 4 for discomfort.

With just one incision, the device was rotated around to take samples from different areas, 23 samples I think.
The whole process took about 30 mins.

If you can take a local, that’s what I’d go for.

Also, give a MacMilan nurse a call, just have a chat, they’ve been through it all before.

HTHs

Best of luck

 

[Dutch 68]

Tha

I had my biopsies in 2019, they went through my perineum, not my backside.

I had a local anaesthetic and managed ok.

It was like having an old fashioned spud gun held against you when the trigger is pulled, not too painful but quite a thud.

On a scale of 1-10, 10 being the worst, it was about 3 or 4 for discomfort.

With just one incision, the device was rotated around to take samples from different areas, 23 samples I think.
The whole process took about 30 mins.

If you can take a local, that’s what I’d go for.

HTHs

Best of luck

Thank you very much for your reply , much appreciated

 

[pagey]

as old rat above

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[Dutch 68]

as old rat above

Thank you

 

[The general]

three 'Red Cards' were issued!

i only had one ! That was bowel too full

 

[The general]

what are people’s experiences please, should you opt next time for general anaesthesia or local anaesthesia ?

I will give it 7 out 10 for pain /discomfort cause all depends what type of biopsy

 

[Dutch 68]

I will give it 7 out 10 for pain /discomfort cause all depends what type of biopsy

Thank you, it will be a transperineal biopsy

 

[rod_vw]

I had my biopsies in 2019, they went through my perineum, not my backside.

I had a local anaesthetic and managed ok.

It was like having an old fashioned spud gun held against you when the trigger is pulled, not too painful but quite a thud.

On a scale of 1-10, 10 being the worst, it was about 3 or 4 for discomfort.

With just one incision, the device was rotated around to take samples from different areas, 23 samples I think.
The whole process took about 30 mins.

If you can take a local, that’s what I’d go for.

Also, give a MacMilan nurse a call, just have a chat, they’ve been through it all before.

HTHs

Best of luck

That sound very much like my experience of the biopsy. The most painful part of mine was the local anaesthetic needle which was used a number of times. The biopsy instrument was inserted through the perineum like Oldrat had but I had two insertions, I believe one for each side of the prostate.
As Oldrat says if you can manage the local anaesthetic, which you will not be aware of anyway, I would advise taking that option. There is always the potential for embarrassment if you are that way inclined but otherwise I found the procedure quite discomfort free. The start of the procedure when I was in the very prone position, legs akimbo and raised was being asked if I would hold 'the dangly bits out of the way'!
There is always the chance for a laugh with the staff, I had a female nurse 'holding my hand' to whom I remarked at the beginning of the procedure, 'I haven't given birth recently' which caused a chuckle in the room.
The follow up before leaving the area was to ensure that patients could pass water OK then we were sent home, there were four of us there that morning for the same process.

Good luck with everything and keep smiling.

Rod

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[Dutch 68]

That sound very much like my experience of the biopsy. The most painful part of mine was the local anaesthetic needle which was used a number of times. The biopsy instrument was inserted through the perineum like Oldrat had but I had two insertions, I believe one for each side of the prostate.
As Oldrat says if you can manage the local anaesthetic, which you will not be aware of anyway, I would advise taking that option. There is always the potential for embarrassment if you are that way inclined but otherwise I found the procedure quite discomfort free. The start of the procedure when I was in the very prone position, legs akimbo and raised was being asked if I would hold 'the dangly bits out of the way'!
There is always the chance for a laugh with the staff, I had a female nurse 'holding my hand' to whom I remarked at the beginning of the procedure, 'I haven't given birth recently' which caused a chuckle in the room.
The follow up before leaving the area was to ensure that patients could pass water OK then we were sent home, there were four of us there that morning for the same process.

Good luck with everything and keep smiling.

Rod

Thank you, the smile hasn’t yet returned after opening the letter this afternoon

 

[fred_jb]

Thank you, it will be a transperineal biopsy

In that case the only pain is when they inject the anaesthetic, once in each side of the centre line in my case. A bit like the one before a filling at the dentist, if a little more uncomfortable, but they get it done very quickly. After that, as others have said you feel the thumps as the samples are taken, but no pain.

You will probably also have an ultrasound probe inserted with the live image from that superimposed on your MRI scan so they accurately target the suspicious areas.

 

[Dutch 68]

In that case the only pain is when they inject the anaesthetic, once in each side of the centre line in my case. A bit like the one before a filling at the dentist, if a little more uncomfortable, but they get it done very quickly. After that, as others have said you feel the thumps as the samples are taken, but no pain.

You will probably also have an ultrasound probe inserted with the live image from that superimposed on your MRI scan so they accurately target the suspicious areas.

Thank you

 

[DavidG58]

Thank you

The thought of it was the worst bit for me, a good banter in the room made it go quickly.

Local anaesthetic jabs were the worst part, the Gandhi pants were useful not being allowed to leave before peeing was worrying having been told to empty bladder before starting biopsy as I might accidentally wee. How was I supposed to wee now , but the threat of a catheter forced the issue in the end

These guys do these procedures day in day out , you will be well supported

 

[Dutch 68]

The thought of it was the worst bit for me, a good banter in the room made it go quickly.

Local anaesthetic jabs were the worst part, the Gandhi pants were useful not being allowed to leave before peeing was worrying having been told to empty bladder before starting biopsy as I might accidentally wee. How was I supposed to wee now , but the threat of a catheter forced the issue in the end

These guys do these procedures day in day out , you will be well supported

Thank you

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[Spara4042]

I see my RT consultant tomorrow after what seems a very long 4 and a bit months since I saw anybody

Hoping to be given a start date for RT and which level I am going into on the trial I have been accepted on to

Started hormone treatment just after my last appointment , not suffered too badly, lot of hot sweats, swelling where I have been injected and nearly a stone heavier

I keep telling myself treatment is better than being told it’s too late

Sorry to hear it's taking so long to get treatment. I hope you get some firm dates, soon

I was given my first hormone injection within 30 minutes of being informed that I had Grade 5 Prostate Cancer & from diagnosis to completing treatment was just less than 4 months for me.

Are you on the PACE-NODES trial?
I was assigned to the non lymph nodes group, had 5 treatments which ended on 13th May. After a 3 week tour of Europe, I had my blood test on 4th July & spoke to my consultant on 11th. PSA less than 0.01, meaning it was undetectable

I'm on 12 weekly hormone injections for two years, with blood tests every other injection.

3 injections in; my belly is expanding, I've got slight moobs & the hot flushes are happening more frequently. I'm booked in for Auricular Acupuncture, which will, hopefully, help to combat the hot flushes.

Post treatment I suffered with "radiotherapy bowel" for about a month before things settled down. Nearly 3 months down the line I still suffer with increased frequency, including nocturia -which wasn't really a problem before - but the flow is definitely better.

 

[68c]

Two and a half months on from radical prostectomy - sadly they could not spare cutting the nerves. PSA 0.01
Get up to pee twice a night but the Tena pad stays dry. Still using two pads during the day as small dribble when I lift things or bend over suddenly. Feeling positive.

 

[Spara4042]

Three months into my hormone treatment , I have had concerns about what is actually happening , allegedly my cancer is being shrunk due to lack of testosterone, but my oncology team do no blood tests to check anything

Trying to get into our doctors is a joke , so I found an online self test option and ordered one. Arrived today , I didn’t realise (or read properly) when ordering but it only says positive or negative , above or below 4

Test done , it’s a bit like a Covid test but using a blood prick sample , 10 mins later confirmed negative

Definitely put my head in a better place

£25 well spent annoying that its so hard to get done as part of my treatment

My main concern was that the cancer wasn’t reducing and if PSA isn’t below 30 I can’t start the RT trial

All good now

View attachment 913206

Hi David,
I was advised to have my first blood test, post treatment, a week before my telephone call with the consultant.

I was told I had to have two hormone injections before being scheduled for RT & no blood tests prior to RT.

As a participant in the PACE-NODES trial, they did MRI scans prior to each treatment. I'm presuming that these will show the prostate is shrinking, due to the hormone therapy, as well as confirming they are still treating the correct area.

If there's any other information I can help you with, please give me a shout.

 

[Dutch 68]

So, had the biopsy today at 4, as most other people say the pain was not too bad 2/3 out of 10 ( classing my vasectomy many years ago as 8/9 out of 10)
Walked home and was shocked at the amount of blood and huge blood cloths at first visit to the toilet. So keep drinking fluid is the advice, alcohol no problem I was told, but that is no attraction to me anyway, I drink about 1 cider a month lol.
Now see what’s happens when the the injections wear off.
So now it is a waiting game, apparently they take about 4 weeks to get the results to me, when I asked why the answer was that’s the NHS for you.
Great staff at Cheltenham general

 

[pagey]

So, had the biopsy today at 4, as most other people say the pain was not too bad 2/3 out of 10 ( classing my vasectomy many years ago as 8/9 out of 10)
Walked home and was shocked at the amount of blood and huge blood cloths at first visit to the toilet. So keep drinking fluid is the advice, alcohol no problem I was told, but that is no attraction to me anyway, I drink about 1 cider a month lol.
Now see what’s happens when the the injections wear off.
So now it is a waiting game, apparently they take about 4 weeks to get the results to me, when I asked why the answer was that’s the NHS for you.
Great staff at Cheltenham general

yes it gets a bit sore( dont ride your bike for a while) i had my biopsy on 18/12/23 and i was phoned with an appt on the 02/01/24 so they already knew the result, dont think you will wait 4 weeks for the result the bleeding stops quickly but it is quite a shock

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