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First post - finding our way

User
Posted 03 Jul 2021 at 19:10

Hi everyone,

This is NOT the site that I ever anticipated joining but here we are.  I’ve read through quite a lot of the Q&A’s and already feel a lot calmer reading your responses.  I didn’t realise that I’d have to look up SO many abbreviations but I’m getting there :-)

I’m Chris and my husband is James.  James is a fairly active 73 year old.

He has NO symptoms but he had his first PSA test in March 2020.  As this was at the start of the Covid restrictions, his GP advised just getting another test in 3 months and also explained that many men have prostate cancer with no idea they have it and that many post mortems show that men have died WITH prostate cancer rather than FROM it.  We were both reassured by this.

His results were

Mar 2020     PSA 7.49

Jun 2020      PSA 7.63

Oct 2020      PSA 7.02

May 2021    PSA 8.4

At this point another GP thought it best for James to have an MRI and a biopsy.

We got the results last week.

From 32 “cores” taken, 20 of them were cancerous.  It is all contained within the prostate which we understand to be localised.

His Gleason score is 7 (3+4) so grade group 2 and T stage is T1 or T2.

We left the urology department with lots of literature and here is where we started to get a bit overwhelmed.  I’m sure you all know what I mean by that.

His consultant phoned on Wednesday to say that “as it is intermediate” he would have to have treatment.  Surgery is not an option because James is already under the care of the haematology department for a blood disorder that, although doesn’t cause any problems, means he has a low white cell count (the cells that fight infection).  The consultant said his only option is to have hormone therapy and then radiotherapy 5 days a week for 6 weeks and has prescribed him Bicalutamide.  He is expecting to receive an appointment with an oncologist at the hospital where he would have the radiotherapy.

Having read about all the side effects for both HT and RT (see, I told you I was learning), James is reluctant to do anything and this is why we are now asking for your help and advice.  At this point, he’d like to put off any treatment and monitor it by having PSA tests every 3 months.  We aren’t necessarily agreed on this point but we welcome your input.

I realise I have gone on and on, I apologise, and thank you to the people who have read this far. I am a touch typist and it has probably taken you longer to read this than it has for me to type it.

Thank you, in anticipation.  Now off to enjoy/endure the football.  I’m English and James is a Scot!  All fun in this house.

Chris

Edited by member 05 Jul 2021 at 15:11  | Reason: To add age

User
Posted 03 Jul 2021 at 20:07

The problem with going on active surveillance is that if the cancer breaks out of the prostate and metastacises to other areas of the body it becomes incurable.

At the moment, with a T2, there's a (fairly reasonable) chance of a cure.

If the consultant says there's no choice but to have treatment, they obviously think it's big enough or close to the edge enough to want dealing with before it becomes a bigger problem. But you can always get a second opinion.

At the end of the day, though, the patient has the right to decline treatment. (Hard issue, that one).

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 03 Jul 2021 at 21:14
My father-in-law is aged 86, with a haematological problem who has just had a very successful replacement hip surgery, with a spinal anaesthetic, so don’t discount a surgical prostatectomy.

Get a second opinion. Both from a surgeon and an oncologist.

Best of luck.

Cheers, John.

User
Posted 04 Jul 2021 at 03:54
From what we have been told, I don't think AS has been been a suggested option, rather his consultant says he should have treatment. This does not surprise me with so many cores cancerous. The more extensive the cancer, the bigger the problem it is to deal with it. Certainly, if it is left to advance beyond the Prostate, it will have to be treated systemically and these treatments can restrain PCa from a few months to a number of years. Dying from PCa is a kind of death a man would not want and not just because it can shorten lifespan.

Many men with PCa didn't exhibit symptoms, I was one of them.

I would also seek another opinion on whether a Prostatectomy could be done despite your husband's blood condition, before opting for RT, although this might also be needed if the cancer has been been found to spread

Barry
User
Posted 04 Jul 2021 at 10:24

Honestly, I think he just needs a bit of time to process this new situation. Whatever he has read about RT may have been unnecessarily doom & gloom - most men get through it without major problems. Which bit of having RT is he most concerned about? No one can make him have treatment if he doesn't want it but if left, the side effects of advanced cancer are far worse than the side effects of treatment.

It isn't clear from your post - has he had a bone or PET scan yet to determine whether the cancer has spread?

Just as a comparison, my father-in-law was diagnosed with almost identical stats to yours. He refused treatment and lived for 4 years.

 

Edited by member 04 Jul 2021 at 10:25  | Reason: Not specified

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

User
Posted 05 Jul 2021 at 16:08

Hi Chris,

I too can touch type and with 8 fingers and 2 thumbs.  I learnt 45 years ago and it never went away, yes you can start with a single line and next thing there's a page.  It then gets a bit much to check what you've written.

His psa isn't rising very fast which is often a good sign and could mean he could wait 3 months and perhaps another 3 months and so on.   Although psa isn't a good way of judging a case and it's better to keep the psa lower and in single figures. 

There is a risk in putting it off.  It would be a nightmare if they suddenly said it's incurable if curative treatment had been offered.

HT usually lasts about 3 months and usually starts almost immediately and is followed by another period of HT which could last longer.

I didn't want HT or RT and opted for surgery.  When it comes to having no treatment or HT/RT there is no choice if you want to survive long.   If his psa kept rising at about 12% a year it could take years to get serious although 20/32 cores and Gleason 3+4 is reason to think it might be bigger than it appears from psa alone.

Although as other people have suggested there is brachytherapy, I think that includes HT as well and it involves invasive treatment.

The consultant seems a bit one sided in saying it's 6 weeks of RT, which is longer than many.   Also perhaps in saying that surgery isn't possible.  I'm not medical though.

There's a lot to ponder. If it was me I'd be wanting treatment now and feel happy that I'd got ahead of the game,  but there are those who play a cooler game.

All the Best, Peter

 

Edited by member 05 Jul 2021 at 20:00  | Reason: Not specified

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User
Posted 03 Jul 2021 at 20:07

The problem with going on active surveillance is that if the cancer breaks out of the prostate and metastacises to other areas of the body it becomes incurable.

At the moment, with a T2, there's a (fairly reasonable) chance of a cure.

If the consultant says there's no choice but to have treatment, they obviously think it's big enough or close to the edge enough to want dealing with before it becomes a bigger problem. But you can always get a second opinion.

At the end of the day, though, the patient has the right to decline treatment. (Hard issue, that one).

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 03 Jul 2021 at 21:14
My father-in-law is aged 86, with a haematological problem who has just had a very successful replacement hip surgery, with a spinal anaesthetic, so don’t discount a surgical prostatectomy.

Get a second opinion. Both from a surgeon and an oncologist.

Best of luck.

Cheers, John.

User
Posted 04 Jul 2021 at 01:38

Yes it is a difficult choice. The psa is not rising too rapidly, but the 20 cores out of 32 is a little high and G7 is worthy of attention.

As you now know most men have got prostate cancer but something else kills them first. So how old is he? If he is in his 80s and the 3 monthly psa test only increased by about 1.0 per year I would hazzard a guess that something else will kill him before PCa, so just monitor it. If he is in his 50s with G7 and a PSA which keeps increasing even slowly, I think the cancer if left untreated will probably kill him, but possibly not for ten or more years. If he's in his 60s or 70s then the judgement will be a finer call.

Has anyone mentioned brachytherapy? It can reduce the side effects of RT. Do you know how long he would be on HT? Six months would barely be noticeable, three years would be less pleasant.

Will the RT or HT affect the blood disorder? Unlikely but worth asking.

I always think active surveillance is best if offered, there is no point in rushing in to treatment if it can be delayed. But it doesn't sound like any of the medics is that keen on offering active surveillance so it might be time to bight the bullet. 

Dave

User
Posted 04 Jul 2021 at 03:54
From what we have been told, I don't think AS has been been a suggested option, rather his consultant says he should have treatment. This does not surprise me with so many cores cancerous. The more extensive the cancer, the bigger the problem it is to deal with it. Certainly, if it is left to advance beyond the Prostate, it will have to be treated systemically and these treatments can restrain PCa from a few months to a number of years. Dying from PCa is a kind of death a man would not want and not just because it can shorten lifespan.

Many men with PCa didn't exhibit symptoms, I was one of them.

I would also seek another opinion on whether a Prostatectomy could be done despite your husband's blood condition, before opting for RT, although this might also be needed if the cancer has been been found to spread

Barry
User
Posted 04 Jul 2021 at 09:57

Hi Chris,

I can not advise you on what option you should take but it maybe an idea to look at Brachytherpy as an option and it is less invasive and you are in and out of hospital normally with in two days.

If you click on my avatar you can read the full journey and my feeling about that choice.But the short version is i was sent for further tests after microscopic blood was found in my urine in a private medical for my 7.5 ton driving license at 70 in September 2016, it came back as PSA 2.19 Gleason 3+4=7 and five of twenty cores positive.

I had the choice of Robotic surgery or Brachytherapy and i went for the Brachytherapy after some time thinking about it but also it looked less invasive and maybe it would have less side affects.I will let you read my bio and see what you think.

I have had a good journey so far and will reach five years in September 2021.The ED side is not so good but that part affects all men differently over time depending on life style etc.

If you need any other information i log in everyday so willing to help all.

Good Luck John.

User
Posted 04 Jul 2021 at 10:24

Honestly, I think he just needs a bit of time to process this new situation. Whatever he has read about RT may have been unnecessarily doom & gloom - most men get through it without major problems. Which bit of having RT is he most concerned about? No one can make him have treatment if he doesn't want it but if left, the side effects of advanced cancer are far worse than the side effects of treatment.

It isn't clear from your post - has he had a bone or PET scan yet to determine whether the cancer has spread?

Just as a comparison, my father-in-law was diagnosed with almost identical stats to yours. He refused treatment and lived for 4 years.

 

Edited by member 04 Jul 2021 at 10:25  | Reason: Not specified

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

User
Posted 05 Jul 2021 at 14:37

Hi Dave,

Thank you for replying.  I forgot to mention that James is a pretty healthy (apart from the obvious) 73 year old.

I’ve just looked up brachytherapy, and although it doesn’t appear to be what the consultant said – 5 days a week for 6 weeks which I’m guessing is the EBT, the hospital James will attend does offer this too so it will be added to the list of questions to ask. 

I will try and contact his haematologist to double check that he is able to take this Bicalutamide HT.  It’s always amazing to me that neither consultant was aware of his other condition as they “didn’t have his notes” in front of them, the first chap we saw (that gave us the results) did look on his computer and then organised another blood test but the consultant that phoned didn’t even mention it and it completely slipped my mind to ask.

I don’t know how long James will be on the HT, it’s all such a steep learning curve that, again, I didn’t think to ask. 

This site is great for making us realise what we should be asking.

Thanks again for replying.  We do appreciate it.

Chris

 

User
Posted 05 Jul 2021 at 14:54

Hi John,

Thank you for replying.  Can I ask if you only had the brachytherapy treatment or did you have to take HT too?

Regards,

Chris

User
Posted 05 Jul 2021 at 15:06

Hi Lyn,

Thank you for replying.

Yes! You are absolutely right.  He does need time to take it all in.  SO much information.  I realise that all the side effects have to be mentioned but the literature doesn’t state what proportion of people have them and at first you just think OMG, so time is definitely needed to process all the information.

No, he hasn’t had a bone or PET scan but he did have an MRI and he has been diagnosed with “organ confined prostate cancer”.

We’re due to go on a little mini break in a couple of weeks and James will have made a decision by then hopefully.  Currently his thinking is that he will start with the HT on our return but that could change.

Regards,

Chris

User
Posted 05 Jul 2021 at 16:08

Hi Chris,

I too can touch type and with 8 fingers and 2 thumbs.  I learnt 45 years ago and it never went away, yes you can start with a single line and next thing there's a page.  It then gets a bit much to check what you've written.

His psa isn't rising very fast which is often a good sign and could mean he could wait 3 months and perhaps another 3 months and so on.   Although psa isn't a good way of judging a case and it's better to keep the psa lower and in single figures. 

There is a risk in putting it off.  It would be a nightmare if they suddenly said it's incurable if curative treatment had been offered.

HT usually lasts about 3 months and usually starts almost immediately and is followed by another period of HT which could last longer.

I didn't want HT or RT and opted for surgery.  When it comes to having no treatment or HT/RT there is no choice if you want to survive long.   If his psa kept rising at about 12% a year it could take years to get serious although 20/32 cores and Gleason 3+4 is reason to think it might be bigger than it appears from psa alone.

Although as other people have suggested there is brachytherapy, I think that includes HT as well and it involves invasive treatment.

The consultant seems a bit one sided in saying it's 6 weeks of RT, which is longer than many.   Also perhaps in saying that surgery isn't possible.  I'm not medical though.

There's a lot to ponder. If it was me I'd be wanting treatment now and feel happy that I'd got ahead of the game,  but there are those who play a cooler game.

All the Best, Peter

 

Edited by member 05 Jul 2021 at 20:00  | Reason: Not specified

User
Posted 05 Jul 2021 at 17:37
I found RT and HT to be entirely tolerable. I'd be happy to answer any questions you may have about it. I finished my RT in March 2019.

Best wishes,

Chris

User
Posted 05 Jul 2021 at 17:56

Originally Posted by: Online Community Member

No, he hasn’t had a bone or PET scan but he did have an MRI and he has been diagnosed with “organ confined prostate cancer”.

 

It can be organ confined and still have metastasised to bone, lymphatic system or organs. Add to your list of questions - are they going to do a bone scan or other detailed scan to check? 

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

User
Posted 05 Jul 2021 at 20:15

Thank you, I wasn't aware of this.  

Yep, another question added.

Chris 

User
Posted 09 Jul 2021 at 11:06

Hi Chris,

Thank you for replying.  Your treatment sounds exactly the same as the recommended one for James.  Can I ask if you had any side effects from the Bicalutimide, and if you did was it straight away?  I understand that not everyone will have all of the side effects but it is pretty off putting when you read through the list.

Regards,

Chris

User
Posted 09 Jul 2021 at 11:44

Hi Chris,

Sorry for late reply,  I just had low dose Brachytherapy but had the choice of Robotic surgery as well that the first surgeon was pushing me towards but luckily there was a Brachytherpy surgeon in the hospital at the same time so i asked to see him before i made a decision.Looking back i think both the surgeons believed there's was the best option but it is up to you to make the decision and if you are like me and many other members on here you will never know if you took the best option.

Good luck John. 

User
Posted 09 Jul 2021 at 17:04

Hello @LynEyre,

That comment you made really did struck a chord with me. I have just been diagnosed with PCa and was told it is contained within the gland and has not metastasised. The capsule is intact (during DRE the urologist could not feel any nodule). Now I have to worry that it could have metastasised... gasp! 

I better mention this when I consult with the surgeon before deciding on treatment.

 

One day at a time...

User
Posted 09 Jul 2021 at 20:08
Have you had a bone scan? If so, the results of that along with your mpMRI probably your urologist enough data to say that you are not metastatic. If you haven't had a bone scan, all he can say is that the probability of you having mets is quite low.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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