Post RP and SRT journey - oh joy

hewhositsoncushions

Hi all

Hi all

Quick update.

Day 13 of SRT. Staff are great and I have a routine now with most sessions just after lunch.

No bladder or bowel side effects as yet pain wise but getting looser by the day.

Main issue this week is extreme fatigue. I went back to the gym after a three week break at the end of last week, had a stinking cold over the weekend and since then my batteries are at about 4%. Dopey, hard to get moving, thick head and so on. Not sure if it is just the cold playing out slowy or actual RT fatigue but it sucks.

I want to go back to the gym but I am scared it will put me on my back.

Didn't hep the additional stress over the weekend that my son left to go to university on Sunday. Onlly an hour away but it still feels like I lost a limb.

Cushions

VascodaGama

Update

I am glad for knowing you have started the RT. Surely you will be experiencing some side effects but all will resolve within a couple of months once you have finished the treatment.

Best wishes for a good outcome, meaning the knockdown of the bandit.

VG

 

lighterwood67

High Functioning Pessimist

Well, you maybe a high functioning pessimist, but to me you appear to be a person with their head screwed on correctly and doing everything you can to thwart this cancer that pivots from time to time on us.  On the lighter side, high functioning pessimists, when things go right, are never disappointed and in most cases expectations are far exceeded.  I do not know you, but we have a common enemy.  I have read a lot of your posts.  All give me food for thought.  Thanks for taking the time to do those things.  Thoughts and prayers on your journey.

Georges Calvez

Radiotherapy

I went through 66 Grays of radiotherapy and it was unpleasant rather than painful, I think I was one of the luckier ones as others I know had it far worse.
Right at the end it felt hot when I peed and passed a log, my pull ups went a bit pink as well.
That went away after a few weeks, I had some funny pains from time to time after that but everything except this weird tingling in my legs when I wake up at night is gone and this is fading fast.
There is the possibility of long term side effects, some of which are quite nasty but they are thankfully rare.
With this bandit you have to live day to day at the beginning but as the weeks turn into months and years, the hope waxes that you have left him behind you.

hewhositsoncushions

Hi all

Hi all

Thanks for the kind words above.

Slight wobble this morning.

I woke up this morning to a small bloodstain surrounded by a pale stain where my penis would have lied when sleeping face down.

I did not wake for a pee overnight.

We could not find any skin damage to explain this.

I suspect this is an early side effect.

Have not noticed any blood in urine flow to date.

I will notify the Radiologist and wear pads overnight.

Three weeks in.

is this usual?

Cheers

C

Georges Calvez

Side effect

It is a possible side effect.
When I had the RT I was told to use Dove soap and put almond oil on the skin to stop the burning. I continued with my normal baby show gel, I have sensitive skin, and the Dove and almond oil stayed on the shelf unopened as I had no burning at all, the prostatectomy scars became a very angry red.
Some people have terrible side effects, there is no telling if a patient will go through the treament with few effects or lots.
I have several pages, unfortunately in French, listing all the possible effects, I looked them over and thought, Oh f**k, and then nothing much happened.
There is a link here to a page about bleeding, I hope yours clears up quickly.
https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/late-effects-pelvic-radiotherapy/blood-in-urine.html

hewhositsoncushions

Hi George

Hi George

Thanks. I am very lucky so far if all I have had is one bleed. Things feel a bit twingy down below and I need to pee a lot but that is it.

Main issue is mental - after an exhausing week I am felling vulnerable and so fed up at the moment reading about recurrence rates post SRT being quite high and mean survival time being a bit rubbish after SRT relapse. My brain is not my friend at the moment.

C

Josephg

Radiation and Bleeding

Bleeding is not unusual during and/or after radiation therapy.  I did not bleed during radiation, but I did so on more than one occassion after radiation.  Certainly, advise your Radiation Oncologist, to keep them informed, and to receive any feedback that they have pertaining to your own case.

You have chosen a course of treatment, so look only ahead, and don't waste mental and emotional energy on looking backward, or second-guessing any of your previous decisions (I know, much easier said than done).

I wish you the best of outcomes on your journey.

hewhositsoncushions

Joseph

Joseph

I'm more stuck worrying about looking forward to the unknowns.

Stupid, I know but I think the beginning of the side effects just hits home how out of my control all this is.

C

Josephg

hewhositsoncushions said:

Joseph

Joseph

I'm more stuck worrying about looking forward to the unknowns.

Stupid, I know but I think the beginning of the side effects just hits home how out of my control all this is.

C

Control

You are proactively working on what you can control, and that is all that can be expected from you.  If and/or when future situations occur, you will work at that time on what you can control.

Again, easier said than done, but that is the life of a cancer survivor (really, everybody).

Live each and every day working on what you can control, and make the best of each and every day for you, your family, and your friends.

hewhositsoncushions

Thanks Joseph - I am trying

Thanks Joseph - I am trying to do so but it is hard.

hewhositsoncushions

Question on stats

Hi

If one is T2c N0 M0 and has RP then SRT and both fail, does that drop one into the 30% 5 year survical bracket alongside T3 and T4. I am struggling to reconcile this with the 90% 5 year survical rate for T2c and the 30% failire rate for RP and 50% failure rate for SRT. The numbers do not seem to add up.

Cheers

C

hewhositsoncushions

Cheers Old Salt

Cheers Old Salt

It is a bugger trying to find accurate numbers, I was more interested in the question "does a failed SRT lump you in with T4 / advanced / incurable" with the numbers just as paramaters around this. Is this a logical premise or am I talking out of my hat?

Georges Calvez

Statistics

The thing you have to keep in your mind is that the statistics are a lot rubbish.
Some of them are very old pre modern RT and ADT so they are not really relevant, some have very small sample sizes, etc.
As Vasco says elsewhere we know that prostate cancer is about 20 - 25 variants of a disease with some being a lot aggressive than others with the aggressive ones being in a small minority.
Some people achieve the gold standard of being completely cured, no cancer anywhere, never comes back.
Others have to live with cancer for a long time but it is controlled.
Only 3 % go on and die of prostate cancer, even some of the very serious cases die of something else, more men with prostate cancer die of heart disease than of the cancer.
It is not a you have got cancer, go say goodbye to all your favourite places, etc and get ready to die, illness for almost all of us.

Old Salt

Stats

Some of these 'statistics' are based on ancient data. 

hewhositsoncushions

Thanks George

Thanks George

I think one problem is that doing RT and being on boards such as this and seeing friends and family get ill with it, we tend to see the worst case and not the good ones. A bit like modern news, we only see the worst things in life.

Itis hard to keep afloat sometimes though. I have a relative and a close friend with cancer too, and this damn disease just seems to invade our lives. To  quote everyone else, F*CK CANCER!

LifePart2

Moving forward

Hey Cushions,

Just found this thread.  You need to stop calculating your chances and realize that, just like for me, when your time is up, your time is up.  The 3% of those that don't beat this pales compared to the 75% who don't and never seek treatment.

Just having the courage to face this like you have has GREATLY improved your chances.  Let your doctors worry about the rest; sounds like they are on the ball. 

Take it one day at a time, one hour at a time, if you have to.

Things are looking good for me (*knock on wood *), 2 years post-op, but we are never totally in the clear, and I remember well those gloomy days after diagnosis..

DISTRACT yourself with constructive things like family activities, work, gym, all the stuff you like. Read. Watch a film. Learn to play an instrument....List out everything you want to do in the next 3-5 years...

Next time you're in France Nord, we'll meet for a beer or a café if you like.(my advice: stick to beer or wine, and only 1 glass per meal or not at all, if allowed by your doctors)

cheers

hewhositsoncushions

Hey

Hey

I am an inveterate worrier - not a good combo for a cancer patient.

I am building up things to do to keep going - have tai chi 2 - 3 times a week and gym work. Have also gone back to writing.

As for drink, I have tried to be good but wifey is visting a friend next weekend so I may just cuddle up with a few glasses of red medicine and a take away. Long term I want to give up fully but I need something too look forward to whilst on RT!

Appreciate the offer of a visit - not been to France since Paris in 1997. Going back is on my bucket list.

C

Georges Calvez

Penn ar Bed

I live in the far north west of France where the land touches what was to the ancients the limitless seas of the Atlantic.
The Romans were foolish and called it Finistére as do the French, we know it as Penn ar Bed, the head of the world.
The place is full of standing stones or menhirs, it is not unusual to find them in churchyards so to some extent pre Roman paganism, Roman paganism and christianity stand side by side.
We know very little about what the Neolithic peoples believed but we can guess that the stones had some significance and they saw the sun setting in the west  as passing over into the next world so maybe they gathered at the solstices or bought their dead here so they would be closer to heaven.
Today we have our own language, Breton or Brezhoneg, and a distinct culture, this is a place of cider, whisky and beer, not so much wine. We have our own style of music that sounds more like pipe bands than anything else and lots more.
We are part of the great Celtic fringe of Europe with links to Cornwall, Wales, Ireland, Scotland, etc.
So if you want to see a place that looks like Cornwall but we speak French most of the time, drop by when you visit France or look us up on the internet!

hewhositsoncushions

Feeling a bit crap today.

Feeling a bit crap today.

Vindaloo bum has funally kicked in - the latter (watery) half of my motions hurt like hell coming out.

I also have a worrying ache to the right of Mr Stubby when I move in a way that puts pressure on my internal organs.

A furtle around and a squeeze shows no lumps per se but when I squeeze in a particular way that area does seem a tiny bit more solid than the other side and it causes more pain.

I am hoping it is referred pain or RT side effects and not a lymph tumour.