The dreaded return of the disease - Post Op PSA rising - - Page 2Localised cancer

User

Posted 16 Oct 2017 at 06:22

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

If life gives you lemons , then make lemonade

User

Posted 16 Oct 2017 at 18:49

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 19 Oct 2017 at 16:29

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 16:40

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 14:25

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 22:39

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 12:19

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

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 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

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 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

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 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

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The dreaded return of the disease - Post Op PSA rising

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