Effing cancer is an effing effer, frankly

[Wombat3]

billflin said:

Bernie_78 said:

Can relate to tge treatment being the biggest challenge.

I have been following your posts and your attitude to this is inspirational.

This sentiment really rings true with me too - I was never actually feeling "ill", the treatment (and the mental impact of the diagnosis) were the real challenge; and I had very moderate side effects and a single low dose of chemotherapy, so not even on the same scale as you.

Good luck with it all.

I'll echo the second part that. I'm 15 months down track from having the Melanoma on the back of my right eye treated with PB Radio. It seems stable (hopefully now just an inert mass) though there are some risks of a few side effects from the radio in the next 9-12 months.

The vision from it is better than it was but by no means good (won't get any better I am told) but so far it hasn't spread that I know of though I have another MRI in a week or so to check my Liver again.

Never really been ill or in any constant pain & save for the initial op, the treatment wasn't difficult. The mental side of it though is not quite so cut & dried. Black cloud / sword of Damocles, call it what you will.

Having cancer is one problem, getting your head around it is quite another.

[Hodgie]

Wombat3 said:

I'll echo the second part that. I'm 15 months down track from having the Melanoma on the back of my right eye treated with PB Radio. It seems stable (hopefully now just an inert mass) though there are some risks of a few side effects from the radio in the next 9-12 months.

The vision from it is better than it was but by no means good (won't get any better I am told) but so far it hasn't spread that I know of though I have another MRI in a week or so to check my Liver again.

Never really been ill or in any constant pain & save for the initial op, the treatment wasn't difficult. The mental side of it though is not quite so cut & dried. Black cloud / sword of Damocles, call it what you will.

Having cancer is one problem, getting your head around it is quite another.

I agree with the mental side being challenging, I am struggling with it to be honest. I had pretty bad anxiety prior to my diagnosis and am now in the midst of full blown health anxiety, any little pain/discomfort I'm convinced is a recurrence. On top of that I've convinced myself I've had symptoms of other types of cancer, currently its bowel cancer as I've had a few symptoms that are all likely due to nothing and/or anxiety. Been to the doctors and they have reassured me but the worry is still there.

Glad things are sounding positive and best of luck with your upcoming MRI.

[Siko]

Wombat3 said:

The mental side of it though is not quite so cut & dried. Black cloud / sword of Damocles, call it what you will.

Having cancer is one problem, getting your head around it is quite another.

Very true. I am still mentally struggling to get my head around it all 18 months on from my own cancer treatment finishing. I had counselling last year just to get it all off my chest which helped a lot, but feels like a sticking plaster over a gaping wound. I don't have a lot of patience at times and whilst I still rarely lose my temper, I find I need to distance myself from situations where I know I will start getting grumpy. I should be grateful for everything and truly I am, but I am incredibly bitter too. Can't explain it but my counsellor said I was grieving for the life I had before and have partly lost.

[TameRacingDriver]

It's my dad's birthday today and a little while ago he just posted his own farewell message on Facebook.

That has hit me hard in the guts

[Bernie_78]

Siko said:

Can't explain it but my counsellor said I was grieving for the life I had before and have partly lost.

Is exactly what my counsellor said. Been well the last 45 years but now were faced with a life of compromise and anxiety.

Appreciate the supportive comments, I'm busy looking for alternative trials and my next scan 8th Feb so hopefully an pleasant early birthday gift.

[Scrump]

TameRacingDriver said:

Speaking of treatment, my dad with terminal liver cancer has decided to stop the treatment as it was causing more problems than it solved - basically it wasn't working. So unfortunately I guess this will be the beginning of the end.

Keep positive. My father was deemed too far along for any treatment for his liver cancer, and almost a year later he is still here and still stable.

[TameRacingDriver]

Scrump said:

Keep positive. My father was deemed too far along for any treatment for his liver cancer, and almost a year later he is still here and still stable.

That's great to hear, I hope that will be the case, though he didn't look good at all when I saw him last. Fingers crossed though

[Damp Logs]

Siko said:

TameRacingDriver said:

Speaking of treatment, my dad with terminal liver cancer has decided to stop the treatment as it was causing more problems than it solved - basically it wasn't working. So unfortunately I guess this will be the beginning of the end.

Sorry to hear that My dad gets his results on monday from various tests but sounds 99% certain that he has prostate cancer, just hope it hasn't spread anywhere else of course as prostate looks to be reasonably treatable.

Please don’t let the consultant push your Dad for the ‘standard’ treatment of radiotherapy/hormone or removal.
Investigate the ‘non-invasive options, such as nanoknife, proton beam therapy, cryotherapy etc

All depends on age as well as size and location of tumours, but nhs won’t necessarily mention these options.

Search Prof Mark Emberton and Alistair Grey at UCLH

I had cryotherapy 18 months ago and (so far) all good

Message me if you think I can help,

Good luck, and stay positive

[Bernie_78]

Scrump said:

That is a great way to approach this.
I am sure I am not the only one joining you in fingers crossed.

With regard to my father he had blood tests this week, first since April last year. Amazingly the results were the same as last time. Him being stable was the absolute best we could have hoped for, so he is now planning on where to go in February to escape the cold.

Thanks

[Siko]

Damp Logs said:

Please don’t let the consultant push your Dad for the ‘standard’ treatment of radiotherapy/hormone or removal.
Investigate the ‘non-invasive options, such as nanoknife, proton beam therapy, cryotherapy etc

All depends on age as well as size and location of tumours, but nhs won’t necessarily mention these options.

Search Prof Mark Emberton and Alistair Grey at UCLH

I had cryotherapy 18 months ago and (so far) all good

Message me if you think I can help,

Good luck, and stay positive

Thank you - will see how we get on on Monday. Appreciate the help

[Bernie_78]

Damp Logs said:

Please don’t let the consultant push your Dad for the ‘standard’ treatment of radiotherapy/hormone or removal.
Investigate the ‘non-invasive options, such as nanoknife, proton beam therapy, cryotherapy etc

All depends on age as well as size and location of tumours, but nhs won’t necessarily mention these options.

Search Prof Mark Emberton and Alistair Grey at UCLH

I had cryotherapy 18 months ago and (so far) all good

Message me if you think I can help,

Good luck, and stay positive

I've not heard of any if those treatments, but I'll definitely be bringing them.up if the news isn't ideal next month

[Damp Logs]

Bernie_78 said:

Damp Logs said:

Please don’t let the consultant push your Dad for the ‘standard’ treatment of radiotherapy/hormone or removal.
Investigate the ‘non-invasive options, such as nanoknife, proton beam therapy, cryotherapy etc

All depends on age as well as size and location of tumours, but nhs won’t necessarily mention these options.

Search Prof Mark Emberton and Alistair Grey at UCLH

I had cryotherapy 18 months ago and (so far) all good

Message me if you think I can help,

Good luck, and stay positive

I've not heard of any if those treatments, but I'll definitely be bringing them.up if the news isn't ideal next month

And unless you get a progressive consultant, you won’t be told about them - collectively known as Focal Therapy

And despite what you may be told most ARE available on nhs

[Bernie_78]

Damp Logs said:

And unless you get a progressive consultant, you won’t be told about them - collectively known as Focal Therapy

And despite what you may be told most ARE available on nhs

Very much this. Been wading through
https://www.canceractive.com/ which has a lot if interesting info in it.

[mike13]

Siko said:

Wombat3 said:

The mental side of it though is not quite so cut & dried. Black cloud / sword of Damocles, call it what you will.

Having cancer is one problem, getting your head around it is quite another.

Very true. I am still mentally struggling to get my head around it all 18 months on from my own cancer treatment finishing. I had counselling last year just to get it all off my chest which helped a lot, but feels like a sticking plaster over a gaping wound. I don't have a lot of patience at times and whilst I still rarely lose my temper, I find I need to distance myself from situations where I know I will start getting grumpy. I should be grateful for everything and truly I am, but I am incredibly bitter too. Can't explain it but my counsellor said I was grieving for the life I had before and have partly lost.

That's interesting Siko, I've no longer got any patience now, when in fact I was a bit too laid back before my cancer treatment. Like you I don't lose my temper but there's rarely a day I don't have an issue with something or another.

I do miss my old life, perhaps it's simply that.

[DETTRB26]

Hi all. Just back to vent a bit as I've had a tough few weeks with my stage 3 testicular cancer.
I have a non-seminoma germ cell tumour which based on the onset to spread time last year seems particularly aggressive. I have had the standard 4 rounds of "EP" chemo lasting 5 days each and initially had relief from pain and a fast reduction in the blood markers, all positive with some gastro side effects and hair loss but overall quite manageable compared to many people. After round 3 however, my markers basically stalled and I've just seen a small rise after round four which has prompted me to be called in for another round of the same 5 day slog.
Apart from that being very demoralising, I also cant see what doing the same thing again is going to achieve - its seems to me the tumours have evolved / become resistant to the drugs being pumped in to attack them. I can feel something again in my abdomen and kidneys which is how it all started last October.

I know a few here have been through the testicular cancer journey, if anyone can offer any thoughts / reassurance it would be welcome as there isn't much communication from the team at the cancer centre and obviously my prospects appear to be dwindling which makes interaction / keeping the brave face with my wife and son quite challenging.

As usual all the best to anyone else going through this sh*t either directly or indirectly.

[Siko]

Sorry to hear that mate, all I can suggest is something I thought about a lot while I went through it, as Churchill said "When you're going through hell, keep going".

[FactoryBacked]

DETTRB26 said:

Hi all. Just back to vent a bit as I've had a tough few weeks with my stage 3 testicular cancer.
I have a non-seminoma germ cell tumour which based on the onset to spread time last year seems particularly aggressive. I have had the standard 4 rounds of "EP" chemo lasting 5 days each and initially had relief from pain and a fast reduction in the blood markers, all positive with some gastro side effects and hair loss but overall quite manageable compared to many people. After round 3 however, my markers basically stalled and I've just seen a small rise after round four which has prompted me to be called in for another round of the same 5 day slog.
Apart from that being very demoralising, I also cant see what doing the same thing again is going to achieve - its seems to me the tumours have evolved / become resistant to the drugs being pumped in to attack them. I can feel something again in my abdomen and kidneys which is how it all started last October.

I know a few here have been through the testicular cancer journey, if anyone can offer any thoughts / reassurance it would be welcome as there isn't much communication from the team at the cancer centre and obviously my prospects appear to be dwindling which makes interaction / keeping the brave face with my wife and son quite challenging.

As usual all the best to anyone else going through this sh*t either directly or indirectly.

Sorry to hear this. Sounds like you're in the thick of it on a pretty brutal journey at the moment.

Around 3 years ago I had my lefty out and then 3 x BEP followed by an RPLND operation.

As others have said, the mental side is tough. Try not to worry about what you feel in your abdomen until any scans confirm one way or another. Even now, nearly 3 years on from the end of treatment I still get random pains and the subsequent worry that coemes with them.

Just keep focusing on how treatable this type of cancer is and how the percentages are stacked massively in your favour. Trust the doctors on the extra round of chemo but are you able to make use of any other resources to help you get some more information to help you make decisions or put your mind at rest?

Not sure where you are but in the South West there is a testicular cancer charity called 'It's In The Bag' who work very closely with the hospitals and have a support network for people who have / have had testicular cancer. I also got offered help if needed from the Macmillan nurses at the hospital.

I would imagine (hope) there would be similar support services where you are.

Thoughts with you and your family and if I can help or support in any way, please get in touch.

Edited by FactoryBacked on Tuesday 23 January 07:07

[Hodgie]

DETTRB26 said:

Hi all. Just back to vent a bit as I've had a tough few weeks with my stage 3 testicular cancer.
I have a non-seminoma germ cell tumour which based on the onset to spread time last year seems particularly aggressive. I have had the standard 4 rounds of "EP" chemo lasting 5 days each and initially had relief from pain and a fast reduction in the blood markers, all positive with some gastro side effects and hair loss but overall quite manageable compared to many people. After round 3 however, my markers basically stalled and I've just seen a small rise after round four which has prompted me to be called in for another round of the same 5 day slog.
Apart from that being very demoralising, I also cant see what doing the same thing again is going to achieve - its seems to me the tumours have evolved / become resistant to the drugs being pumped in to attack them. I can feel something again in my abdomen and kidneys which is how it all started last October.

I know a few here have been through the testicular cancer journey, if anyone can offer any thoughts / reassurance it would be welcome as there isn't much communication from the team at the cancer centre and obviously my prospects appear to be dwindling which makes interaction / keeping the brave face with my wife and son quite challenging.

As usual all the best to anyone else going through this sh*t either directly or indirectly.

Sorry you are going through this DETTRB26.

The lack of communication from your cancer center doesn't sound acceptable, are you able to schedule an appointment with the consultant to review the treatment status and hopefully give you some reassurance?

On the whole my care has been very good but there are times I have had to ask them to explain things as they have assumed I either know or don't need to know whatever is going on. I found recording the consultations on my phone very useful, there's a lot going on in them and I can digest it later when there is less anxiety and emotions.

As factorybacked has said, it is very treatable and you will get through this. There is a charity called check em lads, the owner Phil contacts everyone directly tot talk to them about where they are with treatment etc if you want. I haven't done this but found their website, stories/videos very useful.

https://www.testicularcanceruk.com/

Best of luck mate

[Bernie_78]

How's everyone holding up?

[smifffymoto]

Well more st news for our family.
My mum’s husband was diagnosed with throat cancer about 4 months ago,spread to his lungs.
He was given about 6 months.
February is going to be a short month for him.