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SRT - update - results 03/07/2019

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Hi all

I thought I would start a fresh thread as things have changed dramatically.

My PSA has rised to 0.24 and I have now started HT (casodex with two three monthly injections of Triptorelin).

Back story.

PSA rose to 4.0 early last year.

Biopsy suggested G7 (4+3).

RP surgery (bilateral nerve sparing) confirmed the Gleason with staging marked as T2c, with 3% of organ marked as tumour.

PSA rose to 0.17 at the end of Feb and 0.24 at end of March. Total 7 months

Aww crap.

Saw the onco on Tuesday.

Quite direct, told me straight out I was going on HT (6 months) and RT (months 4 and 5).

Flatly refused to discuss PSADT / nomograms / outcomes / forecasts on the grounds that "every case is different". Basically "we will treat you and respond / react / change treatment according to your blood tests as and when". Told me no scans as it would be too small to detect and could never tell if local of spread. I worry that he is pessimistic but won't let on because my records note my anxiety.

Got given all the info about side effects which I already knew.

Basically I feel on a conveyor belt now.

Unfortunately I am a high functioning pessimist at the moment so I have written myself off given the early (ish) relapse and the (relatively short) PSADT.

I need someone to shout at me and tell me to stop being a worrier and get on with it.

Cushions

hewhositsoncushions
Posts: 264
Joined: Mar 2017

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

hewhositsoncushions
Posts: 264
Joined: Mar 2017

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

Old Salt
Posts: 720
Joined: Aug 2014

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

hewhositsoncushions
Posts: 264
Joined: Mar 2017

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
Posts: 228
Joined: Sep 2018

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.

hewhositsoncushions
Posts: 264
Joined: Mar 2017

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
Posts: 3
Joined: Feb 2018

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
Posts: 264
Joined: Mar 2017

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
Posts: 228
Joined: Sep 2018

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
Posts: 264
Joined: Mar 2017

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.

 

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi there,

That sounds similar to me, some days it would come out soft and hot and sometimes it would just feel hot for about the last two weeks, luckily I never had any blood.
I had 66 Gy over 33 days which allowing for the odd weekday off when they tinkered with the machine worked out at a couple of of days over seven weeks.
The last week or so my urine felt hot as well and a couple of days the Tena was a faint pink.
Things did get a bit worse for a week or so after the treatment finished in terms of loose movements, intestinal pains, gas, etc, it is a bit like an oil tanker turning round, it takes a bit of time, after a couple of months I was pretty much back to normal. 
I had some funny transitory pains but no lumps, we had an intern on call all the time to chat to if we felt the need and a consultation every other week.
Have you the same system?
It is unlikely this is a lymph tumour, very likely something to do with the RT, I hope it is nothing.

Best wishes for the rest of your radiation,

Georges

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Hey Georges

I'm consistently runny and raw at the moment. No blood.

I am on 33 days too, with weekends a few machine maintenance days off.

I talked to the review specialist today and she said bowel plus RT irritation is the likely cause. She recommended I stop the enemas.

Bloody IBS is returning which is a plain.

I think that is stress as the diet is as it should be.

One can but press on!

C

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Hi all

Quick update ...

Stopped taking the enemas so the bowel trounle cleared up. Only side effect now is peeing every 20 mins with a little discomfort.

Mentally not so good. People on my UK forum are talking about SRT at 9 months BCR with a non slow rise being of uncertain value (in other words a waste of time).

Given that my onco flatly refused to discuss odds and made no effort to press for mets diagnostics. I'm kind of in a dark place thinking they are just ticking boxes on the journey to the crem.

My friend has not got much time left and her husband and sons will have Christmas without her. Knowing that I am heading down that route is tearing me up.

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi there,

I will say it again, keep the faith.
You feel bad at the moment because of the cumulative effects of the radiation, almost everybody does, but it will feel better a month or two after it stops.
Nothing is cut and dried yet, there is a possibility that the cancer is restricted to the prostate bed and the immediate environs* so the radiation is now killing it off.
Even if you do have recurrence, with prostate cancer in almost all cases it will be a long time to the crem, people go on for decades with intermittent hormone therapy, they adapt and live relatively happy lives.
It becomes a chronic disease like diabetes.
So chin up, you could be two decades or more worth of jumps from the crem!

Bonne chance et kenavo!

Georges

*Environs; immediate neighbourhood, I have always wanted to use this word since reading it in the first sentence of Finnegans Wake and now I have Laughing

VascodaGama's picture
VascodaGama
Posts: 2965
Joined: Nov 2010

Cushions,

I disagree with the opinion of your UK forum participants. SRT got its place in PCa treatments, has proven to provide high benefits and rarely we read about worse SRT outcomes. Surely it doesn't assure the end of a patient's struggle in the fight against the bandit but it provides an opportunity to get rid of cancer for good apart from debulking a great number of malignant cells diminishing the burthen of the cancer.

I understand this newer version surrounding the judgment of a feasible salvage therapy (post a prime treatment) that considers therapies done on guessing as a waste of time. They involve luck therefore may not be worth doing it. However, with the newer image capabilities using PET machines with more specific tracers one could just radiate what has been detected and continue the process radiating each spot as they popup. In fact, even the RT done as prime can be planned providing the same results if it involves radiating only what is detected in image exams (lesser side effects) saving the clean areas in the prostate. Such is the newer way of thinking for radiation therapies in this age of better image capabilities (PET specific techniques).

This is not what NHS follows at present so one should appeal on luck and think on the great benefits provided by SRT done in the dark. Each and every one of those ticking boxes have the bandit that is being smashed and killed. Let's cross our fingers to get all those boxes at the field of attack.

I am sorry for your friend's family but this is the time to think and prepare your own Christmas. Where are you going to have it with your family? Will you detonate the Christmas crackers at your table?

I wonder about the ADT component. Have you had your second shot?

So far 32 sections are gone and the 5 left will assure that the bandit will not standup again. You are a real survivor and many will like to know about your experiences.

Best wishes for a complete successful SRT.

VGama

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi there,

I kept a journal from quite early in my treatment, the first shot of Firmagon at the end of March, I have just had a look at the entries post the radiation and I continued to decline for the first week but started to get better in the second after the end of the radiation so if you follow the same pattern things should start to get better for you about the beginning of November.
So most of it is behind you and fingers crossed for you for the rest.

Best wishes,

Georges
 

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Hi George and Vasco

Thanks for your kind words and support. it is really appreciated.

It is my hope that the recurrence is localised. As Vasco notes, the NHS does not to target scans before SRT. I talked to a fellow UK forum member recently who has the same surgeon and oncologist as me and he said that they told him it was a "highly educated guess".

I am undergoing Volumetric-modulated arc therapy (VMAT) treatment. It is 33 fractions which I have been led to believe is the standard for SRT here. It appears to be a form of radation that follows the topology of the target area based on calculations made from a CAT scan. I guess the idea is to agressively focus on target areas and reducing exposure elsewhere. There is also a timed element as the projector slows down and speeds up as it passes around me.

I think this is the best I can get on the NHS so I cannot complain. The staff have been brilliant.

I had my second three month Triptorelin shot a few weeks before the treatment. Six months in total. The onco at the talk I attended implied this was typical for "low risk cases".

This leads me on to what has caused me the most issues. My head space. I am hyper-analytical and (as mentioned before) a high functioning pessimist. I have had so much confusing and conflicting information thrown my way with no real effort at communication (the surgeon said I had "a lot of tumour", the path report said I had 3% volume of tumour, my BCR stats look iffy, I get told on my GP letter "less than 6% of people die from PCa", onco says six months HT is "low risk" and more). One day I think this is a positive situation, the next, "f*ck! I'll be dead in a year!".

On top of this, the cancer has brough out a lot of buried issues which I am working through with my counsellor.

I am sure you can understand why I get stressed.

Luckily I am spending more time on my volunteer work helping other people which really helps keep my mind off things.

When the SRT is done next Monday and I can breathe, I am going to set up an actionable plan to get my head out of my arse and start positive actions - gym, diet, supplements, meditation etc. I've realised it is foolish to do that now with so much going on.

Vasco. yes you are right - I need to concentrate on my Xmas. I will be at home with wife and son, with parents and in laws a good bet. We will have a good time and for a few days I will lock the door on this damn bandit.

Thanks again guys

H

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Just had my end of treatment review.

A faster zap as the imaging kit was broken. As I had done so well on imaging and placement so far they were happy to go ahead based on markers alone.

One session to go!

Told Dr. that side effects were "OK apart from a couple of dodgy days".

No more HT. Apparantly with my pathology (T2C and just a PSA rise) the risks outweighed the benefits. I guess I can take that as a win.

PSA and Test check in four months.

Aspirin and keto - he basically said "up top you but meat keto is not good." I said I would be vegan / pescetarian vegan.

He commented that sometimes SRT does not work (I knew that!) and neither of us mentioned outcomes.

Three rings on the bell tomorrow, a few glasses of wine and time to reflect that I have a good life and it could be a lot worse!

Here's to the future!

Thanks for all your support!

P

 

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi there,

You need something stronger than wine; stand, clink spirit glasses filled with rocket fuel made from apples, wild plums, etc, together, say 'Yeck Head Mat'.
Down in one, just done your first Breton toast.
Best wishes for your last day of radiation and your life without the dread hormone therapy.

Onwards and upwards,

Georges

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Cheers Georges

Yup, I hoisted a few last night.

Looking forward now - it does involve lots of gym and dieting but hey ho!

C

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Hi all

Just letting you know I rang the bell today.

What a relief.

Feels really odd in some ways but good in others.

Four months now to see what happens.

Smoke me a kipper!

H

lighterwood67's picture
lighterwood67
Posts: 184
Joined: Feb 2018

Great news.  Always great to have positives.  Very up lifting.  Go ahead and get fired up my friend.

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi there,

Hopefully six months down the line all you will have to show for your radiation treatment is four blue dots.
I am almost there after four months, I still have the odd digestive upset and I wake up in the night sometimes with this peculiar tingling in my legs.
My abdominal hair has not regrown completely but that is partly the fault of the Firmagon.
I found the first few weeks after the radiation stopped a bit disorientating. I felt that I was doing something about the cancer and I got into a routine.
Do you have a follow up visit to the radiation guy after six months or so to talk about any residual effects?
I have an emergency number to ring if anything really bad happens like my rectum falling out in the night, if it happens during the day I have to make my own way down there.
Only kidding about the last bit of that but the odd person gets late onset proctitis, etc.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 2965
Joined: Nov 2010

Hi Cushions,

A note in celebrating the end of your SRT; I recall your initial worries but here you are standing alive and kicking. I hope this was the end in your battle. Unfortunately you will have to wait more than four months to really see the fall of the Queen's chastity belt. At four months post SRT the PSA doesn't yet confirm the success. One needs to allow time for the complete end of cell's life cycle (about 6 months) to verify the effect of the radiation. Do not get nervous if the PSA doesn't match your wanted zeros at the four months mile stone. It will get there a little bit later.

OK and here we are. Let's get drunk.

VG   

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Yea, I am just going to have to accept the squeaky bum moments until it settles down :)

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Cushions,

The radiation is a gift that does not stop giving for most of us.
It gets better with time but  more than three months after my 66 Gys I still have days when things downstairs feel a bit rough.
Nothing serious and it is on the mend.

Best wishes,

Georges

hewhositsoncushions
Posts: 264
Joined: Mar 2017

I could not resist the joke as I just had my PSA and Test blood draw today for the review on the 12th. Yesterday I was very Zen about it but this morning I got right in my own head. I simply rode it out and have cheered up now. Que Sera Sera.

Snapshot of where I am (owing to the data loss)

Late 2016 / Early 2017 - PSA consistent at around 4 triggering referall

Early 2017 - MRI and biopsy giving G7 (4+3)

June 2017 - Robotic RP surgery giving:

  • G7 (4+3) N0 M0
  • Adenocarcinoma with 50% mucinous plus focus of cribriform
  • PNI but not extraprostatic PNI
  • No SVI
  • Lymh nodes clear
  • No other pathology concerns

Early 2018 - PSA on the rise (0.16. 0.17)

May 2018 - Recurrencee noted at 0.24 with HT/SRT planned as resolution - HT started immediately

September / October - HT and SRT (IMRT) with very few issues other than weight gain, mood swings, ED and fatigue

January 2019 - Recovering from treatment - more energy, Less ED but moods all over the place - swing to very dark places due to complex pathology - keep being told I have a good chance of a remission

1st Feb - PSA / T blood draw with review in 2 weeks - will be a long wait

Having just started reading "The Tao of Poo and the Te of Roo" I now realise I am an Eyore (George will underestand) in my mindset.

Game on.

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi H,

I am the opposite really, my resting penis is a bit shorter than it was but from time to time it works itself up to a spontaneous part engorgement which is not bad for size, I cannot get a full erection as the nerves are cut.
Due to the degarelix I am dead physically as far as sexual stimulation is concerned but my mind continues and it can have an erotic dream that presses the right buttons and I have an intense and painful orgasm.
My testicles have gone from plum size to small, rotten grapes, they will never recover.
I go for a blood test in the morning, collect my personal copy of the results in the evening, last time I saw Eeyore we had to use my copy as he had not received or could not find his copy!
Have you read 'Zen and the art of motorcycle maintenance', One flew over the cuckoo's nest', 'The cool aid acid test', 'Catch 22', Ulysses by James Joyce to be sure, et la pire, Finnegans Wake!
Trente points pour le dernier, dix ordinaire plus vingt bonus or a bang on the head!

Best wishes,

Georges

hewhositsoncushions
Posts: 264
Joined: Mar 2017

George

I am actually feeling a lot more va va voom at the moment (did 30 minutes treadmill and some weights yesterday) but my plumbing is still mediocre. I am sure it is a lot in the head particularly at the moment as I am waiting for my results on Tuesday. I feel like Anne Boleyne waiting for the headsman at the moment. I just want a result one way or the other so I can move on. I keep flipping from hope to hell every other day.

I have not read any of those books but they are on my bucket list. I did see the Catch 22 movie as a child (silly me) and the scene in the B17 where the lad's innards spills out still gives me flashbacks. An early reminder of our mortality.

H

hewhositsoncushions
Posts: 264
Joined: Mar 2017

T - 3 days and I am struggling a bit with negative thoughts. One minute I can see the postive options, the next I pain the worst outcome. Either one is as likely. This sucks. Even knowing the hourglass is on its last inch is better than this uncertainty,

VascodaGama's picture
VascodaGama
Posts: 2965
Joined: Nov 2010

Cushions,

I did worry as much in my fifties but now I am so close to my nominal span that I tend to accept easier what karma has been reserved to me.

This doesn't mean that I lay back lazily on the facts but simply that I manage to presence them from a different perspective. It relaxes me allowing me to enjoy the little details of life and the occurrences surrounding us all. Brexit, the Chinese Moon mission and trials of corrupted ministers are inclusive in the equation. What I may miss the most will be the moment when men steps on Mars.

Think about it. Your score is still far but you will get there too.

Enjoy.

VG

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Cushions,

When did you finish ADT / HT as you should have a zero PSA for some time afterwards, it takes at least a few months for the systems to switch back on and the testosterone to reappear.
No testosterone, no cancer activity, no PSA.
It is very unlikely to the point of impossibility that your cancer is independent of testosterone at this point so I reckon even if you have some cancer it will be sleeping!
I am T - 6 weeks and I am doing a list; PSA, glucose, etc, I got Dr Pooh to give me some amoldipine 5mg today and she warned me not to be naughty and double up before at least a fortnight.
You will be zero mate and so I will I at the end of March and that is a stone ginger, promise
So kick off your shoes, pour a big glass of red, drink and then repeat until you feel better.
I have snagged myself some kippers so I am having them fried tonight with fresh homemade bread and Brittany butter, washed down with Old Speckled Hen, mmmmm

Best wishes,

Georges

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Thanks guys

As always, your kind words help. My inner "Mr Catastrophe" is running at full revs at the moment.

My situation has precipitated a real existentual crisis which is leading me to a new way of thinking, that your words confirm.

I've prayed to God, dabbled in Bhuddism and Taoism and other such notions. Of course, it was like talking to a brick wall with the words "I do not care" graffitid on it. Your words, my personal counselling and my own inner reflections are making me finally realise the solution only lies within each of us to help ourselves and each other. Whatever the circumstances, I just need to fully absorb the fact that I can either change things or accept them as they are but either way it is down to me. I'm slowly getting there.

H

hewhositsoncushions
Posts: 264
Joined: Mar 2017

T - 24. Let the sqeaky bum commence.

Georges Calvez
Posts: 228
Joined: Sep 2018

What does that mean?

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Wassup yourself :)

First post SRT test tomorrow afternoon. The term squeaky bum is used on my UK forum to accurately describe the feelings of impending impendingness :)

H

Georges Calvez
Posts: 228
Joined: Sep 2018

Sorreee,

I have just been digging in the garden so I was feeling a bit out of it,
OK D - 1 or as the French would have it J - 1.
Best of luck, old chap, you are going to be fine!
I take it that drinkies are on ice ready for wild celebrations, Eeyore style sorrow drowning, demain?

Best of luck again,

Georges

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Cheers George

Champagne only - no more negative thinking for me!

H

hewhositsoncushions
Posts: 264
Joined: Mar 2017

No champange tonight - there was a letter cock up over a clinic cancellation and I actually have an appointment in two weeks. Poorly worded letters not explicitly referencing each other or actually saying there was a cancellation. I forgot rule #1. Never assume the NHS will get your paperwork right - CHECK, CHECK and CHECK AGAIN.

Georges Calvez
Posts: 228
Joined: Sep 2018

Merde, merde, merde!
Suffering suckercats Batman, over to plan B, large Glenfiddich, try and avoid worry mode.
I have been up to Roscoff today with the wife to buy some local seed garlic that is adapted to Breton conditions, bloody swimming and then boily warm.
Mission accomplished

hewhositsoncushions
Posts: 264
Joined: Mar 2017

That is the polite version :)

I devided to take it all out on the Imperials in Skyrim this evening. I feel much better Cool

Josephg
Posts: 151
Joined: Jan 2013

I'm pleased to read that you are feeling much better, Hew.

We can't impact the cards that we are dealt, but we can manage how we play the hand.

We can manage, for the most part, how we react and maintain our mental and emotional stability.  What works for one person, may not work for another person.  When you find something that works, stick with it, but do not stop searching for something that may work even better.

One day at a time.

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Hi all

Results today.

PSA 0.07 (was told OK as less than 0.1)

Test 14nmol/l (was told back to normal)

SRT finished in October

So I would say encouraging given that this is an unmasked reading with no HT in my system.

Next reading in four months.

Nadir in 14 months.

Thank you all for your support and kindness.

H

VascodaGama's picture
VascodaGama
Posts: 2965
Joined: Nov 2010

Cushions

PSA=0.07 is fantastic. The testosterone is back to the normal range (14nmol/L = 400 ng/dL) indicating that your testis are functioning again. This will take you out of most ADT side effects too. I wonder why you say that the Nadir is in 14 months. Is this the threshold used by your doctor to access predictions in RT patients with your similar status?.
The unmasked PSA is already pretty low. It would be considered remission by many.

OK, Let's just have a preliminar celebration for the risen T and lower P.

At our health ... hip hip Hooray......

VG

hewhositsoncushions
Posts: 264
Joined: Mar 2017

Hi Vasco

Yes, I feel much better now. I suspect a lot of the issues recently were in my head rather thean biochemical. My libido has returned (but my ED is still a minor issue) and my armpits finally smell like a locker room (odd how I missed this) but energy levels are still low - I suspect that will recover as I get fitter.

Regarding the PSA levels, on my UK site, I am told by the experts there that it can take a year to 18 months for PSA levels to hit nadir as cells die off slowly. You are right that I am in a good place which will hopefully continue but it may take time to drop and level off giving my baseline for montoring. I've seen lots of PSA profiles that follow this pattern.

I did ineed hip hip hooray last night with some wine and beer but that is it now as I am on a health kick!

Thanks again for your advice and support!

H

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Hew,

Definitely a step in the right direction.
Monitoring PSA profiles and guessing at a possible baseline is a game in itself.
But I reckon you have a good chance of negligible PSA for a long time to come.

Best wishes,

Georges

hewhositsoncushions
Posts: 264
Joined: Mar 2017

I hope so - could have without that post about PSA doubling time but as that did not appear to factor in salvage, one has to look on the bright side.

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Hew,

Hard to say what to factor into salvage.
Your case should have been nice and simple, out with the prostate, bye bye cancer.
But it was not as obviously some of the little demons had escaped but it is looking good now.
I had a shot of Firmagon this morning so it hurts, I am on the rum and ibuprofené tonight.
Tigger at the end of month, I am going to tell him that if he cannot come up with a good reason not to stop then 18 months of this **** is enough.

Best wishes,

 Cap'n Georges, chief pirate of Quimper, arrrrgh!

hewhositsoncushions
Posts: 264
Joined: Mar 2017

It is looking good.

I did sh*t kittens for a minute reading that bl**dy journal but then sanity kicked in. I had tell *myself* the journal was 20 years out of date and did not factor in salvage. Note to self - STOP READING STUFF!

On an interesting note some thing was bugging me and I logged on to my private blood test site and looked at my T results from 2 years ago. 2 years ago at the start of this journey, my T was 9 nmol/l which is right at the bottom of the scale. Right now it is 14. Which means that I have had a positive reaction in a more testosterone rich environment than prior to my surgery. Intuitively that seems to me to be a good sign. I also suspect that the T is up due to a better lifestyle.

Keep on the rum and borrow on my cushions for a while (assuming you had the jab in your bum!)

H

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Hew,

Firmagon is injected under the skin of the abdomen, I am an expert now and have trained several visiting nurses on the technique.
I am on the Jersey Reds  v Doncaster Knights rugby match tonight via the internet.
We are winning!
Wife out, cat sleeping on her beanie!

Nuit,

Georges

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