I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
ο»Ώ

'My 33 Days with Cancer'- radiotherapy following removal of prostate in 2017

User
Posted 07 Nov 2021 at 17:59
I agree, Dave. My central tattoo was much higher up. They're just fixed alignment points. Mine certainly wasn't over my prostate!

Cheers,

Chris

User
Posted 09 Nov 2021 at 21:47

Hopefully you are ok peter you have gone quiet  gaz πŸ€”

User
Posted 10 Nov 2021 at 17:22

My 33 Days with Cancer

 

Day 7

 

TGI FRIDAY. Pleased its Friday the end of my first full week of treatment because it’s felt like a long slog tbh. I really feel like I need a rest from it all for a couple of days and can’t wait for a lie in.

 

Ian made a comment yesterday asking why if I have had my Cancerous Prostate removed am I still being treated for cancer, great point I thought worthy of further explanation. I agreed to having my Prostate removed some four and a half years ago with the consultants promise at the time that he could ‘cure me’…It didn’t work as shortly afterwards my PSA (Prostate Specific Antigen) levels began to rise again.

 

PSA is a protein given off by the Cancer itself into the blood stream as it grows and they can measure the levels of PSA in your blood via a blood sample taken from your arm, which in turn can be a very good indicator of whether Cancer is present or in fact growing over a given period of time... I won’t go into detail here it’s too bigger subject, but a doctor will tell you that a raised PSA doesn’t necessarily mean that you have Prostate Cancer but knowing what I know about it coupled with my experiences if your PSA is raised its not a good sign.

So, this meant that the Cancer had somehow escaped my Prostate before they took it out. I have a theory about how and why this happened which I may talk about later. Apparently, men who ride bikes a lot can see a rise in their PSA levels.

 

Now it gets interesting because guess what they cannot tell you where in the body the damaged cancer cells are now.

 

Let’s just step back here a moment in simple terms Cancer is damaged cells in your body they grow and attack and kill healthy cells around them hence Cancer grows. The bad cells can be transported around the blood stream via the hundreds of lymph nodes deep inside your body. Anyway, Prostate cancer is particularly nasty as it turns into bone Cancer….and you don’t want that!!! This fact leading to my original decision to have it removed.

 

The thing is that I could have opted to have Radiotherapy treatment ‘instead’ of having my Prostate removed but I was warned that I would not be able to have it removed after Radiotherapy treatment if anything went wrong as the treatment itself ‘welds’ the Prostate to the bladder and the Prostate then cannot subsequently be removed. Having it removed first would effectively give me a second chance by being able to have Radiotherapy if anything went wrong which it did hence finding ourselves where we are today.

Radiotherapy can only be given once so I cannot go back and have a second go at this.

 

So, they are ‘guessing’ that the bad cancer cells are still there sitting in the area from where the Prostate was removed called the ‘Prostate bed’ situated one inch above my Willy and this is the area that they are now targeting with the Radiotherapy treatment. I won’t know if it’s been successful until the 11th January seems a long time to wait but I am able to put it out of my mind no point worrying about something that hasn’t happened.

 

The Radiotherapy cannot target the bad cells directly instead they ‘blast around’ the area in the hope of finding and hitting them which means that they also end up killing the good cells that surround them which in turn cause the side effects.

 

Should be successful….. unless of course the buggers moved!

 

How am I feeling

 

Ok still 1.25 /10 on the scale

User
Posted 10 Nov 2021 at 17:49
To clarify, Peter, what RT actually does is to damage the DNA of all the cells in the target area. Healthy cells can repair their DNA, but the repair mechanism is usually faulty in cancer cells, so eventually the cancer cells die. That why it can take up to 18 months after RT finishes for your PSA to reach its lowest level.

Prostate cancer doesn't "turn into" bone cancer. Prostate cancer can metastasise in both bones and soft tissues, but it's still prostate cancer.

Best wishes,

Chris

User
Posted 10 Nov 2021 at 19:00

Thanks for the clarification Chris appreciate that  whatever it is I don't want itπŸ˜‚

Regards

Pete

User
Posted 10 Nov 2021 at 20:21
"Apparently, men who ride bikes a lot can see a rise in their PSA levels."

It is true that a bit of European research showed that professional cyclists can have higher PSA readings than other men. However, there appeared to be no increased risk of these men getting prostate cancer. This led to NICE guidance that urologists should take into account that a man is a professional cyclist before deciding to do a biopsy.

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

User
Posted 10 Nov 2021 at 21:19

Peter 

I had the "very educated guess" conversation, possibly by the same oncologist. Have a look at my profile.

Thanks Chris

 

 

User
Posted 11 Nov 2021 at 20:37

My 33 Days with Cancer

 

Day 8

 

Here we go again!... Start of week 2. Remember what Tony the Radiographer said? Problems normally start to show / develop after 7-10 days well today is day 8 so I am starting the week a little apprehensive as to how things might develop from here and what the immediate future may hold.

 

Now they get you to sign a ‘disclaimer’ document before treatment commences confirming that you understand that it’s likely that you will suffer from, (and this is all in their words) ‘immediate’ and ‘acute’ side effects…. now let’s hold on here a minute why have they felt it necessary to include the word ‘acute’ in the sentence because the word ‘acute’ to me means it’s going to really hurt as in ‘acute tooth ache” as opposed to “my tooth is playing up a bit” I am not great with pain; and this tells me that ‘I am going to suffer’ from ‘immediate and ACUTE pain’ no doubt about it… hence my apprehension.

 

Thought you might be interested in knowing what’s on the list of possible ‘acute’ suffering.

Nausea, diarrhoea, tenesmus? which basically translates as a ‘pains in the arse’ Bleeding from the anus or bum, bleeding from the penis or Willy, something called ‘urinary frequency bladder operation’ which basically translates to ‘pissing like a racehorse’, bladder urgency, skin soreness in the area being treated. Impotence…a bonus…scarring of the bowel and or bladder with possibility of long-term bleeding, Incontinence…great!. Not to mention the fact that the Radiotherapy can give you secondary cancers.

At the end of all this they have a statement that reads ‘confirm the patient is ‘happy to proceed’….Sign here!

 

Met Patrick today lovely old man aged 74 a jolly little rotund person. It’s fascinating because I find that nearly everyone I meet are more than happy to openly discuss how cancer is affecting their lives. He has stage 3 Prostate cancer, and his Prostate is still in place. The reason they don’t attempt to remove it from someone so old may be that the cancer is no longer contained within the Prostate or for whatever other reason depending on that individuals’ circumstances, but the main reason I think is because there is a cut of point when you are just considered too old for such a big operation.

 

Anyway, Patrick has made his mind up “if this doesn’t work, I won’t be having further treatment, they will want me to have chemotherapy, but I will refuse it,” his thoughts are that he doesn’t want to go through Chemo which he thinks will destroy his quality of life, so he is going for quality over quantity.

He told me that he is not ready to go yet but that he is not afraid of death and that “we all die every night” ‘meaning that when you lose consciousness through sleep that’s what deaths like you don’t know you are asleep as you won’t know when you are dead like you didn’t know life before you were born. I liked that.

I am finding it amazing what in depth personal conversations you can get into with people you have never met before in just a 10–15-minute period whilst waiting for your turn on the table.

Left wondering what choice I would make if I found myself in the same position. Hope I meet him again he was an interesting character.

 

How am I feeling?

 

Had a good weekend felt great to have a rest from it all, but at times felt slightly tired had to have a ‘nod’ during the day but immediately felt better after. I really think this is more from the fact that in the last two nights I have got up to go to the toilet 5 and 6 times respectively hoping this is just a blip but might be kidding myself here.

Aware of a dull ache in groin area most of the time especially immediately after treatment

Anyway, I am still at 1.25.

User
Posted 11 Nov 2021 at 20:59
An "acute" condition in medical parlance is one which comes on fairly suddenly, as opposed to a "chronic" condition which develops over a long period of time.

"Tenesmus", if you're interested, is the medical name for the feeling that you need to move your bowels even when there's nothing there to actually pass. It's a common side-effect of RT but should go away pretty quickly too.

I had a chatty oncologist who delighted in explaining all this stuff to me 😁.

Cheers,

Chris

User
Posted 12 Nov 2021 at 00:39

Originally Posted by: Online Community Member

Had a good weekend felt great to have a rest from it all, but at times felt slightly tired had to have a ‘nod’ during the day but immediately felt better after. I really think this is more from the fact that in the last two nights I have got up to go to the toilet 5 and 6 times respectively hoping this is just a blip but might be kidding myself here.

Consider getting a piss bottle. That is to say a bottle you can piss in without having to get all the way out of bed and to the toilet. You will get a better night's sleep if you don't have to walk all the way to the toilet.

1 litre innocent smoothie is the gold standard, wide neck and secure cap. Get the strawberry one, if you get the orange one someone may get a shock when they innocently drink the orange liquid from the bottle they thought contained orange juice.😝

Edited by member 12 Nov 2021 at 00:41  | Reason: Not specified

Dave

User
Posted 12 Nov 2021 at 13:58

Its ok dave I'm only two yards from the toilet and besides I wouldn't need a bottle with such a wide neck 😱

Pete

User
Posted 12 Nov 2021 at 13:59

My 33 Days with Cancer

 

Day 9

 

Ok day 9 and I can honestly say its feeling like Groundhog Day and becoming very monotonous. Problem is now that I am on this train there is no getting off although I would dearly love to.

 

I have had a bad, and seriously emotional morning this morning. Waiting in ‘the line’ I started talking to a young woman sat by herself looking at her phone. “Waiting for someone to come out” I asked. No, she said, “I’m in next” What!! I really didn’t expect that coming from such a beautiful, young woman when the majority of people I come across ‘in the line’ are elderly. Curiosity got the better of me, why? “I have cervical cancer” she replied. She is 34 and her name is Jenny.

 

Her mother joined us with her coffee. Now Jenny like nearly everyone else I meet around here is more than willing to discuss why they are having treatment. She has had her cervix removed but the cancer has spread into other parts of her young body. She is a lovely outgoing person and I instantly liked her she tells me that she has a 4-year-old child at home oh and not forgetting her new recently born twins. Jenny has 2 weeks left of an extensive course of treatment. The main problem for her is the fatigue. She is finding that basically all she can do is sit on the settee all day she has it that bad. As Jenny shares her story you can tell looking into her eyes that she is frightened, frightened of what the future might hold.

 

This affected me if I am honest as I cannot imagine what she must be going through mentally as well as physically at such a young age with such young children. I admit to ‘having a moment’ when I got back to the car.

 

A clear message here to all women putting off having a test, thinking you will be ok because it always happens to someone else doesn’t it?..... Go get tested!

 

I think for anyone contracting Cancer the problem is (generally speaking) there is no quick fix you can be living with it for months maybe years before you know whether the treatment you have undergone has been successful. As I mentioned previously, I won’t know until 11th January so it’s vital that you keep your head right otherwise, I can imagine the whole process could become a nightmare for you especially if you let your mind run wild in imagining what might happen. Personally, I have trained myself not to think about it as there is no point worrying about what ‘may or may not happen’ I can imagine it would only serve to drive you mad although I admit it’s not easy, I have had my moments.

 

However, it is ‘pretty fkn difficult’ not to think about it when you’re having to get up to go to the toilet literally 6 times in a night every night over the last three nights for a pee. Anyone with Prostate cancer will tell you that it really messes with your ‘Willy function’ and over the last three days this has got worse, much worse!

 

“Your drinking enough aren’t ya” asked nurse Rachet. They advise you to drink loads but at first, they didn’t explain why, it’s to help stop infection when your immune system is struggling to keep up with the damage done by the Radiotherapy and they don’t want stale urine sitting in your bladder, so you need to constantly flush it out. So, you drink a lot and then pee even more…a vicious circle. Needless to say, I can never make it home now without a stop at one of my pee stops, and guess what? more bad news, my mate Shaun’s gone missing. However suppose I can finish with some good news, at least I am not a sheep!

 

How am I feeling?

 

Ok well having to increase to 1.5 / 10 today because of the toilet problems I am having otherwise much the same apart from a dull continuous ache in my lower left groin area.

 

NB: I have changed the names of all the people I meet in my blogs.

 

#prostatecancer

 

 

 

 

User
Posted 16 Nov 2021 at 01:56

Hi Pete,

Thanks very much for this diary. I'll echo the call for more information on your history in your profile though. That would make the whole thing much more useful.

I've had my own preliminary planning scan, prior to a scheduled 20 days of SRT following my robotic op in 2017. I haven't been advised when that is going to start as yet however.

I await further diary entries with much anticipation!

Jim


Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 16 Nov 2021 at 07:30

Sorry, I think my reply went to the wrong place.

Edited by member 16 Nov 2021 at 07:35  | Reason: Wrong place

User
Posted 16 Nov 2021 at 19:00

As I mentioned previously, I won’t know until 11th January so it’s vital that you keep your head right

Just to warn you, they won't be able to tell you whether the treatment has been successful on 11th January. They will have a good idea in about 18 months and a more confident prognosis in about 5 years

Edited by member 16 Nov 2021 at 19:00  | Reason: Not specified

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

User
Posted 16 Nov 2021 at 21:44

Get a urine bottle, Pete (Amazon). It'll help enormously with the tiredness if you don't have to get out of bed to pee. You get back to sleep much more quickly. I speak from personal experience!

Cheers,

Chris

 

 

Edited by member 16 Nov 2021 at 21:45  | Reason: Not specified

User
Posted 17 Nov 2021 at 10:14
Following this with great interest as I start my radiotherapy in a couple of weeks time. Really enjoying your posts and hope that it all works out for you
User
Posted 17 Nov 2021 at 13:22

Hi Keith,

Thanks to pestering my oncology nurse I've just discovered that my first dose of SRT is due to be administered in Truro this coming Monday! See the end of my "Leo Robot" thread for further details.

Can I repeat my request to Pete? Please fill out your profile with more detail about your own history up to this point. That way you will attract much more informed commentary on your personal situation.

Which leads me to pose a question to both you and Pete. The powers that be here in Cornwall sprung "hormone therapy" on me at the last moment following a change of consultant. Have you had that discussion, and if so what was the conclusion?

My best wishes to you and Pete for the next stage of your own PCa journeys,

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 17 Nov 2021 at 14:37
It's unusual NOT to have HT as an accompaniment to RT, Jim. HT great improves the success rate of RT by blocking the ability of the cancer cells to divide while the RT kills them. It's usual to start HT several months before RT. In my case, six months prior to RT.

Best wishes,

Chris

User
Posted 17 Nov 2021 at 20:03
Hi Soulsurfer

I never had a conversation about what treatment to have due to speed and urgency at diagnosis. Had mri, next day urgent phone call to come in following day for radiotherapy to my spine. While there for that I was started on Degarelix straight away. Couple of weeks later after biopsy and bone scan oncologist phoned me to say he was putting me on Abiraterone and Prednisolone alongside the Degarelix. Also said I would have the course of radiotherapy towards year end.

Cheers Keith

 
Forum Jump  
©2025 Prostate Cancer UK