The dreaded return of the disease - Post Op PSA rising

User

Posted 08 Sep 2017 at 12:06

I was diagnosed aged 45 in September 2014, Gleason 7, (4+3) PSA 8.0, Stage T2(c)

I underwent Robotic Surgery in November 2014 and am currently recovering

PSA tests 3 monthly until 2016 then 6 monthly as PSA <0.1

Slight issues with urinary incontinence after operation, needed a small pad for a bit but completely recovered after 6-7 weeks

Problems with ED after operation, but slowly recovered to just about pre-op status after 6 months

All in all everything going far better than expected

Feb 2016 - PSA < 0.1

Aug 2016 - PSA < 0.1

Feb 2017 - PSA < 0.1

Update September 2017 alarm bells !!!

PSA - 0.1 ⏰⏰⏰

The dreaded moment that has lurked in my mind since the operation - that the cancer will come back - PSA risen to 0.1 and now detectable

Back on the next dip of this horrible rollercoaster. Another PSA test in October, I guess they will monitor it as it continues to rise until it reaches 0.2 then Radiotherapy I imagine

Damn..........

Edited by member 09 Sep 2017 at 09:59 | Reason: Not specified

User

Posted 08 Sep 2017 at 19:37

Or they just forgot to include the < sign, or the secretary didn't know what it meant so didn't bother to mention it (we have had both of those situations)

Technically, you have still not relapsed even if the score is 0.1 - the NHS determines chemical recurrence as 0.2 or above, or three successive rises above 0.1. John has been at 0.1 or 0.11 for the last 3 tests but for the time being they are still saying it may just be his natural level.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Sep 2017 at 19:56

That much sex could have pushed it up slightly - I think we had 3 successive years when John's PSA was higher in August than the rest of the year and we put it down to the sex, French cheese and barbecues.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Nov 2017 at 20:36

You'll go for a planning CT scan. In preparation you'll have to use a micro enema, empty your bladder and then drink a set amount of water around a half hour before the scan. Once the CT scan is analysed you'll be marked with three very small tattoos to line you up each time for treatment. They are so small but the staff can see them and line you up using laser beams.

I had to use a micro enema before my first ten treatments.

At each treatment I emptied my bladder (and bowels) then drank three cups of water. This is to have your bladder filled to as consistent an amount before each treatment.

I had treatment on a Varian RapidArc machine where I would lie on the bed and my tattoos were lined up to the laser. A 3D image was taken and the staff compared my image each day with the planning scan and then made tiny adjustments to my position before the radiation was fired. The machine rotates 360 degrees as it delivers the treatment. The actual treatment part is quick but I was on the bed for an average of ten minutes in total. After treatment with a filled bladder most men run to the loo! The staff are brilliant and really look after you.

Ido4

User

Posted 08 Sep 2017 at 21:06

You would see results over 0.1.
E.g. 0.12 , 0.14 etc
There is simply no point in super-fine testing anymore below 0.1 as most labs have realised the instruments accuracy is not reliable enough. For example you could take exactly the same blood sample to 2 different hospitals and use the best machine , but get two different results. One could be 0.03 and the other could be 0.07 !! Both results are under 0.1 so are considered undetectable and ok. I have experience in lab work having worked on a refinery and these machines have to be calibrated each day using a sample recognised as having a certain value. But which machine tests that value etc etc. You could go round in circles ......

User

Posted 09 Sep 2017 at 18:15

Originally Posted by: Online Community Member

Or they just forgot to include the < sign, or the secretary didn't know what it meant so didn't bother to mention it (we have had both of those situations)

Just to clarify Lyn

Did you mean that you had the lab send the result omitting the < sign? Or just the GP receptionist?

Sorry. Once, the receptionist didn't mention it because she didn't know what it was. The other time, the GP practice recorded it on his medical records as 0.1 but when we saw the oncologist it was actually <0.1 - the < just hadn't been transferred from the lab report to the medical record.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Oct 2017 at 13:17

Hi Bill
Very much sounds like you have just remaining small cells in the prostate bed area. But nobody really knows where it it is to be honest. A rise to 0.2 slowly is not urgent at all but shows recurrence and they WILL offer salvage RT. And it will technically still be a cure path although nearly 50% of men who have salvage RT then get further recurrence. Obviously there is the risk of side-effects on top of the surgery ones , but not all men get them.
Best wishes

User

Posted 06 Oct 2017 at 16:57

Have a great holiday Bill and deal with the sh1t when you get back. They may recommend that you have HT before the RT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Oct 2017 at 17:07

Hi Bill, Sorry to hear that your PSA has risen to 0.2.

My PSA returned at 0.3 just over a year after surgery and then quickly rose to 0.7 within 2 months.

PSA result at 0.3 was 1/9/16.

I wasn't offered a bone scan but had a gadolinium enhanced MRI in October followed by a choline PET scan in December.

Both confirmed tumours on the prostate bed and a seminal vesicle remnant. At the time of the scans there wasn't any sign of spread but who knows.

I started hormone therapy last December followed by salvage RT March/April this year. PSA is back to undetectable but it is still early days.

Have your holiday and enjoy it.

I wasn't permitted to start HT until all the scans had been done as it shrinks the recurrence which can then be missed.

Keep in touch, best wishes, Ian.

Ido4

User

Posted 16 Oct 2017 at 07:22

Really soryy yiu feeling it at the moment Bill. It’s relentless it seems the worry. But I do think you could still be on a cure route if the bone scan is clear. The most likely scenario is localised recurrence at such a figure and not a distant met.
The family thing breaks you. We have a 7 yr old boy as well as two grown ups , and he will be the real victim here , with my Onco anticipating maybe six yrs of treatment. I’m in a permanent state of not knowing where to turn or what to do for the best.
Try and enjoy the rest of the holiday and face it when you return. Plenty of the local Rioja should do it

User

Posted 16 Oct 2017 at 19:49

Bill and Chris - it is the family thing that's hard. My daughter just started university and my son is about to do GCSEs. I'd love to be around for them for a very long time. This disease is hard for anyone, but the feeling/suspicion you won't be around for your kids is really the hardest part. And no, I'm not being negative - just stating my reality.

Ulsterman

User

Posted 25 Oct 2017 at 13:19

Hi Bill, the waiting is difficult, I had scans last October and then December and tried to put things out of my mind.

You are right to try and be optimistic until told otherwise.

Wishing you all best wishes, Ian.

Ido4

User

Posted 02 Nov 2017 at 18:00

Hi Bill, It's good that you are commencing HT when the PSA is still that low followed by the radiotherapy. The evidence is that salvage treatment has a greater chance of success when the starting PSA is low.

You will get through the treatment. I found the salvage radiotherapy exhausting but we are all different.

Wishing you all the best as you embark on this next round as you say. Ian.

Ido4

User

Posted 02 Nov 2017 at 21:25

Bill

I am about six months in front of you. Started salvage RT three years after RARP. Almost identical procedure to Ido4. I did not have HT but had 33 sessions over a 7 week period in April and May 2017. Pre treatment PSA was 0.27 three months post treatment PSA was 0.08. I did not suffer any fatigue, presumably because I did not have HT (something to do with my stricture). I live about 20-25 minutes from my hospital so no too bad a journey.I soon got into a routine,but it did get a bit tedious doing the same trip 33 times. The staff were great and looked after me really well.

The staff will advise you about your diet so you do not get too much wind during treatment.

Hope all goes well.

Thanks Chris

Added

Five months post treatment Bowel and bladder back to my normal.

Edited by member 02 Nov 2017 at 21:29 | Reason: Not specified

User

Posted 02 Nov 2017 at 21:26

Not everyone has an enema - it depends how good you are at emptying your bowel naturally.

Not everyone has all the side effects - John had his RT at 8.30ish each morning on the way to work - he never needed to take any time off and he carried on going to the gym after work every day and rugby etc.

RT induced fatigue tends to kick in towards the end of the programme and linger for a couple of weeks after but it didn't stop him doing anything.

No urinary or bowel problems at all. You may not get ED but you are likely to lose your libido.

Breast swelling depends a bit on which hormones they put you on - you could ask whether you can have a shot of RT to the breast buds before you start on hormones.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Nov 2017 at 13:32

Thanks Lynn, I agree it is a postcode lottery. I was told the enema was also to make sure the rectum was clear of gas and not moving anything from the planning scan.

Thanks for the advice on using quotes too, I hadn't realised.

Best wishes,

Ian

Ido4

User

Posted 04 Dec 2017 at 17:12

Are you on bicalutamide and then Prostap Bill? I was on bicalutamide for 3 weeks I think. After 10 days I had my first prostap injection. Hormone therapy for two years after finishing radiotherapy seems to be standard. It's also good that you are starting treatment while your PSA is still 0.2. Outcomes are much better when the salvage treatment starts at low levels of PSA. Best wishes with your treatment, Ian.

Ido4

User

Posted 04 Dec 2017 at 17:21

Best wishes to you. Kind of in the same boat as you know. I’ve totally refused RT on a whim but it’s different for you with a cure chance. I’m putting off any treatment for as long as possible if I’m incurable , and will then take the HT and Chemo route as necessary. RT for pain possibly. It’s a great persuader I guess. Stay strong

User

Posted 04 Dec 2017 at 23:52

We all unfortunately have to make our own decisions. At 65 on a pad a day and having to use caverject is a price for me worth paying for being diagnosed and treated. If a 'cure' is available, ask yourself where you'd like to be in 5, 10, 20 and 30 years.

What will life's opportunities offer you? What could you miss? I watched my dad die a painful death with PCa that could have been avoided as he left his treatment too late.

It may seem harsh, but ask yourself these questions. It will help your decision.

Paul

Stay Calm And Carry On.

User

Posted 05 Dec 2017 at 09:35

Sounds like a similar set up to me. I had the RT very soon after the RP, and Bical prescribed for 2 years. To be honest, the RT was horrible, but I don't know if all people have that effect. I've just had the 6 month post RT results, PSA is now <0.0003, Tamoxifen is doing a sterling job and the Bical leaves me with a bit of fatigue. The onco says I can stop Bical at 18 months if I want. Very tempting!

The RP was full nerve sparing, and erections were trying to come back until I started getting zapped. Now it's pump use daily, no libido (which in some ways is a bit of a blessing as my bits can't/won't play anyway) slight dribbles but nowhere near full incontinence.

Was it worth it? Dunno. My take on life is that I'm not too fussed about it. Life is a terminal disease anyway, I've had a good one and am personally happy to bow out as and when required. I've certainly come very close on many occasions! However, my 10 year old daughter would like me to be alive, as would my wife. I could bin the treatment and have a better QoL for me, but I'm now bigger than just me as I have my family. The thought of being able to walk my daughter up the aisle, to see her perform on the big stage, to be there when she falls, these are the things that have guided my choices.

Hey ho, the sacrifices of being a parent and a husband. If I'd known that when I signed up to those roles, would I have still signed up? Yes. Sex life is on hold (hopefully temporary), slight annoying leakage daily but manageable, and I get to share the love and life of two fantastic people. I get to smile and enjoy my two roles. It seems life is bigger than just me.

User

Posted 05 Dec 2017 at 13:11

It is a difficult call. I am 57 and had the op July 2015 followed by HT starting December 2016 and RT March/April 2017.

I found the RT tough, very tiring, but it went well, no issues with preparation etc. My oncologist was really worried about bowel and bladder problems, bowel more so. Once the planning scan was done with a full bladder the risk scores were all well within tolerance.

I now have a little incontinence issues with dribbling and a bit of leakage whereas after the op I was quickly dry. I have zero libido and no erections which I have found really tough but I wanted to grab the final chance of a cure and my wife agreed with that decision.

Like others have said only time will tell whether I have made the right choice. I am on PROSTAP until end April 2019.

I have a horrible feeling given my histology I am not done with this vile disease yet.

But I know the evidence points to having had the RT will slow down progression.

Your PSA doubling time seems quite slow, mines was 1.2 months.

You have to weigh up the risks and benefits of treatment/ no treatment.

There is no right or wrong here unfortunately.

Ian

Ido4

User

Posted 05 Dec 2017 at 19:14

Good one !! It can only be your decision. And a great wife helps. I guess however frightening, if the word cure is still being used.....
good luck friend
Chris

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User

Posted 08 Sep 2017 at 19:37

Or they just forgot to include the < sign, or the secretary didn't know what it meant so didn't bother to mention it (we have had both of those situations)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Sep 2017 at 20:07

Thanks for the info Lyn

I did really hope that the lab omitted the < sign but then found myself just praying but doubting they could make such an error

Now that you have said that it happened to John my fingers are crossed tightly

Oh and the GP secretary and the Urology Nurse specialist both read that it said 0.1 so unless it is a lab error then it has risen from < 0.1

Your post gives me some hope but I feel dread as it reminds me of 3 years ago when I was in denial that it could be cancer until I heard the words from the nurse

User

Posted 08 Sep 2017 at 20:15

A quick question please...

I see some labs use a more sensitive PSA test to several decimal points but mine has only ever said < 0.1, and nothing lower

Does this mean my lab only works to 1 decimal point? And that I would only see 0.1 scores until it gets to 0.2? (Assuming it was rising)

(Hope that question makes sense?)

User

Posted 08 Sep 2017 at 21:06

User

Posted 09 Sep 2017 at 00:10

Originally Posted by: Online Community Member

Or they just forgot to include the < sign, or the secretary didn't know what it meant so didn't bother to mention it (we have had both of those situations)

Just to clarify Lyn

Did you mean that you had the lab send the result omitting the < sign? Or just the GP receptionist?

User

Posted 09 Sep 2017 at 11:55

Yep, happened to me. The "bod" at the other end of the telephone at the GP surgery, failed to mention the "<" sign. I went from <0.03 "undetectable" to 0.05. Caused me no end of worry at the time even though the rise was very very small. I also decided to get a retest privately (as I was abroad at the time) and they made the same mistake as well.

Now, luckily, I can access all my local test results on-line and as long as I see the "<" sign I'm kind of happy. Maybe such a scheme exists in your area?

Flexi

Edited by member 09 Sep 2017 at 12:02 | Reason: Not specified

User

Posted 09 Sep 2017 at 13:21

No, the < sign is definitely not on the result - as confirmed by the receptionist and the nurse specialist who accessed it as well

So it's either 0.1 and rising 🙁

Or desperate hope that the lab omitted the < sign

(I'm still unsure if that was what Lym meant also happened to her husband )

User

Posted 09 Sep 2017 at 13:28

One more thing, I've read that there are other sources of PSA in the body - like Cowper's gland

When I got the last PSA test done, I had been on holiday and me and the wife were having sex every night and most mornings up to the evening before the test. Even though I can't ejaculate anymore, I still get loads of that pre-cum fluid when aroused / having sex

So I wonder if that could somehow elevate PSA?

(You see my desperation for it not to be cancer returning eh?)

User

Posted 09 Sep 2017 at 18:15

Originally Posted by: Online Community Member

Or they just forgot to include the < sign, or the secretary didn't know what it meant so didn't bother to mention it (we have had both of those situations)

Just to clarify Lyn

Did you mean that you had the lab send the result omitting the < sign? Or just the GP receptionist?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Sep 2017 at 19:01

Ah ok I see

I had hoped that the lab made the error rather than the GP practice

So I'll just enter the "watch & wait" phase and see what the 3 monthly results show

Thanks

User

Posted 09 Sep 2017 at 19:41

Hi Kayaker
My psa is climbing rapidly since the op. Yes psa can be made in other parts of the body. Your adrenal glands can make it , and I have a lump on one of mine but I've been assured it's not that. I was interested in your Cowper's gland comment ! Me too. Lots of it still which I'm not sure is a good or bad thing :-)

User

Posted 09 Sep 2017 at 19:56

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Sep 2017 at 21:04

It's a weird world we inhabit after diagnoses like this 😂 The things we discuss

I'm an optimist but get crushed occasionally by reality, it's my wife more than me that I feel for, the thought of not having our longed for retirement / end of our lives together kills me. But I will hope for the best till any worse happens

I'm not in as bad a position as others like Chris (guy deserves a medal tbh) so I'll watch & wait

Thanks Lyn & Chris 👍

User

Posted 06 Oct 2017 at 09:57

Well bad news really, received the result of PSA test on Tuesday

0.2

I’m assuming that salvage radiotherapy is next up for me, I have contacted and left a message with the excellent Nurse Specialist who has been managing my case since this nightmare started 3 years ago

Does anyone know if this means things need attending to urgently? I have an appointment with the Nurse specialist on the 26th and am going on holiday next week for 10 days if I’m wondering if they might want to refer to oncology sooner?

Pretty gutted tbh

Bill

User

Posted 06 Oct 2017 at 13:17

User

Posted 06 Oct 2017 at 13:40

Thanks Chris

That’s what I thought, just spoke to the Nurse and I’ve an appointment on the 26th October then going for bone and MRi scans

Feels like deja-vu back to 3 years ago really. I’ve been lucky with ED and side effects but not feeling that will last after radiotherapy

All I can now hope for is that it’s coming from the prostate bed area and not spread anywhere else - but this disease is unpredictably, difficult to stop and unforgiving as most people here know far better than I do

User

Posted 06 Oct 2017 at 16:57

Have a great holiday Bill and deal with the sh1t when you get back. They may recommend that you have HT before the RT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Oct 2017 at 17:07

Hi Bill, Sorry to hear that your PSA has risen to 0.2.

My PSA returned at 0.3 just over a year after surgery and then quickly rose to 0.7 within 2 months.

PSA result at 0.3 was 1/9/16.

I wasn't offered a bone scan but had a gadolinium enhanced MRI in October followed by a choline PET scan in December.

Both confirmed tumours on the prostate bed and a seminal vesicle remnant. At the time of the scans there wasn't any sign of spread but who knows.

I started hormone therapy last December followed by salvage RT March/April this year. PSA is back to undetectable but it is still early days.

Have your holiday and enjoy it.

I wasn't permitted to start HT until all the scans had been done as it shrinks the recurrence which can then be missed.

Keep in touch, best wishes, Ian.

Ido4

User

Posted 15 Oct 2017 at 22:28

Hi all,

Thanks for the replies and comments. I’m currently in a lovely south Spain urbanisation village holiday - weather is perfect, food and wine superb

Kids (11 and 13) absolutely having a ball

Problem is - me !!

Can’t stop the damn WORRYING about what’s ahead

I look at my kids - in blissful ignorance of life’s great difficulties and I feel so damn guilty about them having to face losing their dad, it absolutely terrifies me to infict that on them

Then I get a grip on the panic, tell myself I may have 10+ years left and my psa is only 0.2 - then I’m OK for a bit, THEN I think about this goddamn strange ache/pain that has appeared out of nowhere in my right shoulder/upper arm over the last 3 weeks and feel scared that I’ve bone mets there or something and the fear runs rampant once again

I almost can’t wait to get home for the bone scan and MRi to settle my mind - but another 5 days to go

Just want to find a way to settle my mind and enjoy the holiday time with my wife and kids and stop fretting unnecessarily

I feel also pathetically worse because I see others in far worse positions than I find myself - but I had started to feel “hopeful” after 3 years - then this bombshell

So I’m sorry to all you folks

User

Posted 16 Oct 2017 at 07:22

User

Posted 16 Oct 2017 at 19:49

Ulsterman

User

Posted 19 Oct 2017 at 17:29

Well I’m having a good enjoyable holiday, 2 more days left and lovely weather ☀️

Wine helps, of course, not having as many dark thoughts. I guess as a species we are resilient and adapt to adversity - time makes it easier

Still very difficult times ahead but I’m not catastrophising the way I felt last week

More 🍷 and 🦐 🍤 tonight

User

Posted 19 Oct 2017 at 17:40

Excellent although I can't work out what you are having with the wine and prawns 🤣🤣🤣

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Oct 2017 at 15:25

Originally Posted by: Online Community Member

Excellent although I can't work out what you are having with the wine and prawns 🤣🤣🤣

Oh loads of different tapas really 😂

And more 🍷👍

User

Posted 24 Oct 2017 at 23:39

Well MRi yesterday and bone scan today

Waiting game now for 7-10 days to find out if it has spread

Depressing time but I’m going to try to hold an optimistic viewpoint till I find out otherwise

User

Posted 25 Oct 2017 at 13:19

Hi Bill, the waiting is difficult, I had scans last October and then December and tried to put things out of my mind.

You are right to try and be optimistic until told otherwise.

Wishing you all best wishes, Ian.

Ido4

User

Posted 02 Nov 2017 at 15:00

The MDT meeting re: my case was this morning and I got a telephone call from the lovely and helpful Specialist Nurse to keep me updated

Thankfully the bone and MRi scans came back clear. The decision is to now to go for hormone treatment and salvage radiotherapy (as Lynn thought was likely)

Should receive an appointment from Oncology in the next few weeks

Hey ho - next round of my fight with this disease

Edited by member 02 Nov 2017 at 15:02 | Reason: Not specified

User

Posted 02 Nov 2017 at 18:00

You will get through the treatment. I found the salvage radiotherapy exhausting but we are all different.

Wishing you all the best as you embark on this next round as you say. Ian.

Ido4

User

Posted 02 Nov 2017 at 19:14

Thanks

Tbh I don’t know anything about HT or RT. Does anyone know about the timescales etc?

How long does the HT take before starring RT?

Bill

User

Posted 02 Nov 2017 at 19:22

I was on HT for three months prior to RT. I will remain on HT until end April 2019 (2 years after RT finished).

As has been said recently some oncologists like you to have 6 months HT before RT.

Ian

Ido4

User

Posted 02 Nov 2017 at 19:26

Ah thanks, gives me a bit of an idea what’s ahead 👍

User

Posted 02 Nov 2017 at 20:36

I had to use a micro enema before my first ten treatments.

At each treatment I emptied my bladder (and bowels) then drank three cups of water. This is to have your bladder filled to as consistent an amount before each treatment.

Ido4

User

Posted 02 Nov 2017 at 21:17

Jeez that sounds a bit rough eh?

I’ve been reading a bit about hormone therapy and radiotherapy - and the possible side effects that each have

Looks like a double dose of side effects might mean it takes a bit out of you?

Urinary and/or bowel problems

Fatigue from both treatments

Back to the old ED probs after having regained full function early after surgery

Breast swelling?

(Emotional/psychological impact?)

All seems to add up to a difficult 6+ months ahead 🙁

Worried about work as well but might be able to have a sone time off as my work is supportive during this time

User

Posted 02 Nov 2017 at 21:25

Bill

The staff will advise you about your diet so you do not get too much wind during treatment.

Hope all goes well.

Thanks Chris

Added

Five months post treatment Bowel and bladder back to my normal.

Edited by member 02 Nov 2017 at 21:29 | Reason: Not specified

User

Posted 02 Nov 2017 at 21:26

Not everyone has an enema - it depends how good you are at emptying your bowel naturally.

RT induced fatigue tends to kick in towards the end of the programme and linger for a couple of weeks after but it didn't stop him doing anything.

No urinary or bowel problems at all. You may not get ED but you are likely to lose your libido.

Breast swelling depends a bit on which hormones they put you on - you could ask whether you can have a shot of RT to the breast buds before you start on hormones.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Nov 2017 at 21:41

Originally Posted by: Online Community Member

Not everyone has an enema - it depends how good you are at emptying your bowel naturally.

RT induced fatigue tends to kick in towards the end of the programme and linger for a couple of weeks after but it didn't stop him doing anything.

No urinary or bowel problems at all. You may not get ED but you are likely to lose your libido.

Breast swelling depends a bit on which hormones they put you on - you could ask whether you can have a shot of RT to the breast buds before you start on hormones.

Thanks Lynn, that alleviates a bit of my concern

User

Posted 02 Nov 2017 at 21:56

Originally Posted by: Online Community Member

Not everyone has an enema - it depends how good you are at emptying your bowel naturally.

Where I had the RT everyone was asked to use the enema for the first ten days. It was their protocol.

There were no deviations unless the enema was causing major issues.

But each centre seems to have its own protocol. I had the radiotherapy over 20 days (higher dose each day) whereas some centres do it over 30+ days.

I was told not to use standard shower cream or moisturisers as they have metal compounds in them and interfere with the radiation. Baby wash and zero shower stuff were the order of the day.

I was told to stop taking any supplements like vitamin D etc. during the radiotherapy and for a while afterwards.

I'm not trying to make you feel bad or put you off Bill, just letting you know what you might experience and I can only tell my story.

Sorry if I gave TMI.

Best wishes to all, Ian.

Ido4

User

Posted 02 Nov 2017 at 22:15

Originally Posted by: Online Community Member

Not everyone has an enema - it depends how good you are at emptying your bowel naturally.

Where I had the RT everyone was asked to use the enema for the first ten days. It was their protocol.

There were no deviations unless the enema was causing major issues.

But each centre seems to have its own protocol. I had the radiotherapy over 20 days (higher dose each day) whereas some centres do it over 30+ days.

I was told not to use standard shower cream or moisturisers as they have metal compounds in them and interfere with the radiation. Baby wash and zero shower stuff were the order of the day.

I was told to stop taking any supplements like vitamin D etc. during the radiotherapy and for a while afterwards.

I'm not trying to make you feel bad or put you off Bill, just letting you know what you might experience and I can only tell my story.

Sorry if I gave TMI.

Best wishes to all, Ian.

Not at all, I appreciate as much info as possible Ian

👍

User

Posted 02 Nov 2017 at 22:22

Yes, baby wash or zero products very important, as little perfumery as possible.

Ido, like everything else it is a postcode lottery. Our hospital only requires enemas if the man isn't emptying well by himself.

When you want to reply with a quote, start your writing a line below the final ] symbol and then it doesn't get lost among the italics

Edited by member 02 Nov 2017 at 22:24 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Nov 2017 at 23:30

I read about anti-oxidant supplements interfering with radiotherapy

Well I’ve been on (daily)

Pom juice

Pomi-T

Green tea

Lycopene

Since my operation - so waste of time and money now that my PSA is on the rise again - I’ll stop it all and mention it to the Oncologist

User

Posted 03 Nov 2017 at 13:32

Thanks Lynn, I agree it is a postcode lottery. I was told the enema was also to make sure the rectum was clear of gas and not moving anything from the planning scan.

Thanks for the advice on using quotes too, I hadn't realised.

Best wishes,

Ian

Ido4

User

Posted 20 Nov 2017 at 23:51

Appointment with Oncologist on 4th December

Plan is for Hormone therapy then radiotherapy apparently - I will get an idea of the timescales then I guess

Really sucks to be a cancer patient (again)

User

Posted 04 Dec 2017 at 12:07

Had the Oncology appointment this morning. A very nice Consultant

She fully informed me of all the risks, which, although I knew them, it felt like a blow from a sledgehammer and going back in time to 3 years ago approaching surgery

Plan is to start on Bicalutamide for about 6 weeks then radiotherapy early in the New Year

Then staying on the hormone therapy for 2 years (gulp)

I thought it wouldn’t be as long as that as I hadn’t taken that in from some above posts

😟

Edited by member 09 Dec 2017 at 15:30 | Reason: Not specified

User

Posted 04 Dec 2017 at 17:12

Ido4

User

Posted 04 Dec 2017 at 17:21

User

Posted 04 Dec 2017 at 22:30

Originally Posted by: Online Community Member

Are you on bicalutamide and then Prostap Bill?

No, I’m going to stay on bicalutamide 150mg tablets for the entire 2 years (because I’m youngish at 48 apparently)

I will be asking for Tamixifen as I don’t want any breast pain/growth type problems

User

Posted 04 Dec 2017 at 23:39

Originally Posted by: Online Community Member

I know our situations are different Chris but I’m really struggling with the idea of RT. The oncologist was very candid, laying out the likely nerve damage and possible incontinence - not to mention possible bowel problems with RT - jeez

I’m 48, don’t want those problems. I’m fine now, no ED and fully continent - just some small growing cancer cells somewhere. I mean, there is a chance of cure, BUT only a chance, I’m now worried about going for the radiotherapy and then finding out a few years down the line that it hasn’t worked, but that I’m incontinent and impotent too?

This is a tough time, part of me wants to avoid RT and hope for as many years as I can get whilst fully functional

Goddamn I hate this disease

User

Posted 04 Dec 2017 at 23:52

What will life's opportunities offer you? What could you miss? I watched my dad die a painful death with PCa that could have been avoided as he left his treatment too late.

It may seem harsh, but ask yourself these questions. It will help your decision.

Paul

Stay Calm And Carry On.

User

Posted 05 Dec 2017 at 00:09

I’m being selfish I think, I have a lovely wife, 3 daughters, 20, 13 and 11

I want to be around for them as long as I can but the selfish part of me can’t stand losing continence/potency and would rather die - I guess that’s the irrational and emotional part of me

I would love 20 to 30 years more life - which might be possible but man, if after radiotherapy I get the bad issues I’m gonna really struggle

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