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My husbands recent diagnosis of advanced prostate cancer

User
Posted 06 Sep 2021 at 00:44

I agree Dave and we have talked about the fact that when the decision is made…no regrets and no looking back. We do what we think is right for us (him) and be confident in that.

User
Posted 06 Sep 2021 at 07:53
ART targets the gap where the prostate was + local lymph nodes if the Onco is concerned about them.

User
Posted 06 Sep 2021 at 19:26

Hi Elaine,

I would consider moving nerve sparing higher up the list. At the moment you are at the start of a very scary journey. And your husband is on HT which means he is perhaps not remembering how much fun a fully working penis is. So your thoughts will definitely be "avoid death by cancer whatever the cost". After all the treatment is over then hopefully death will be avoided, then in the cold light of day you may wonder, could we have avoided death and kept a working penis? I agree no looking back, but what I am trying to do is give you the benefit of hindsight now rather than in the future. Don't forget RT can have an adverse effect on bladder and rectal health, but it is more likely to be later in life. 

I would also say that an ebullient surgeon is not unusual. A man who cuts people open to make them better needs a lot of self confidence. Winnie the pooh's friend Tigger has a lot of positivity, but I wouldn't want him to operate on me.

I should point out I was not offered surgery and I didn't push for it, so I did not have to make the tough decisions you and other members have to make.

I'm only raising all the above points to help you look at the problem from different angles. 

Dave

User
Posted 06 Sep 2021 at 20:40

Hi Dave,

Yes I really appreciate all the advice thank you.

The nerve sparing is definitely something we will highly consider but if it’s at the risk of them leaving more cancer then we just don’t think it’s worth the risk….I do understand what you are saying though.

This guy is not the first urologist/surgeon we have seen and I can assure you they really are not all happy chappys and I really feel it has a detrimental affect on my OH, so when you have someone who it feels is on your side it makes such a difference. He does come with a fabulous reputation too but I know everyone is different and will have different side effects and results.

We are still undecided, it’s driving us a bit crazy at the moment. Still got a few people we need to speak to first but hopefully decision will be made soon.

I see you’re from Manchester Dave. Do you still live in the area? We are also Manchester 

User
Posted 06 Sep 2021 at 22:17

The information posted by Dave and Lynn is spot on and really helped me make my decision to take the hormone therapy and radiotherapy route which up to now has gone really well  hopefully your husbands treatment goes well to good luck and stay positive gaz

User
Posted 06 Sep 2021 at 22:28

I think with T3a and one or two lymph nodes involved, you will have to accept that some cancer will be left behind by surgery, nerve sparing or not. The RT will be required to sweep up what is left.

I will try and give you an analogy. Think of the nerve bundles as the wooden branches of a tree, and think of the leaves as cancer cells. So this tree is a bit weird, as I'm saying it is completely healthy if it has no leaves, you will have to bare with me on this one. If the surgeon spots leaves on this tree he will have to cut it down, OK you might be lucky there may only be leaves on one side, so you will have partial nerve sparing. 

Now think of RT as the Mother of All Hurricanes. It is going to blow through that tree and strip out all the leaves, you may lose a few small branches as well. If you are unlucky one or two leaves may survive and if that is the case then you still have cancer. 

Now I think you have no choice than to have RT whether you have surgery or not. So that hurricane is going to be blowing through that tree, and it has a high chance of stripping all the leaves. Sure the surgeon can definitely chop the whole tree down, but he may leave some leaves elsewhere so you need that hurricane whatever.

Not a perfect analogy but I hope you get the picture.

Now I would argue that if you are having RT anyway, forget the surgery. RT alone may do the job. Alternatively I can see a strong argument for saying well let's get rid of as much cancer as possible because the prostate is pointless if you don't want children and if you remove that pointless gland and all the cancer in it you only have to worry about the cancer which has escaped. The problem is the damage done in pulling the prostate out, and if the RT has a good chance of killing all the cancer why take the risk. 

Though I am happy for everyone on this forum, unless someone is ten or fifteen years post treatment take their success story with a pinch of salt, that includes me I am only one year post HT. Anyone with my diagnosis has a 98% chance of surving prostate cancer for five years anyway. Rather than celebrate my prostate cancer survival I should be celebrating not having a road traffic accident as I was more likely to die from that than PC in the three years since diagnosis. 

You're right some urologists are a bit miserable, but I think I would be if that was my job. 

Yes, I live just outside Glossop, I had treatment at Christie's. I probably remember the names of the miserable urologists but we won't discuss them here. Do you live near by? I am not averse to having a chat over a pint of beer.

Hi gaz, just spotted your post as I was typing, thanks for the vote of confidence, and for acknowledging, we can only talk about success of treatment to date. We don't know the future, but if your an optimist like me no reason to think anything will change. 

Dave

User
Posted 12 Sep 2021 at 13:12

Hi Dave,

Thanks again to you and everyone for all your help of info.

We have finally made the decision to go for surgery, not sure when that will happen yet but meeting up next week to discuss the finer details. We feel a bit relieved just having made the decision. Think it will be 6 to 12 months after op before RT.

Having a few days away next week too, can’t wait for the break!

We’re about 4 miles out of the centre, close to Oldham & Tameside borders so probably around 10 miles from you.

 

 

 

User
Posted 12 Sep 2021 at 18:13

Yes, once you have made a decision it is such a relief. Turning that M1 in to an M0 was the best thing you could do. It has taken your OH from guaranteed HT for the rest of his life, to treatment with curative intent. A cure is always a tall order, but postponing the disease by fifteen years is just as good in a 73 year old, and even five years is not a bad result. So let's hope things all go well. The Christie have RT machines set up in Oldham, so you won't have far to travel, it's not so easy for people who need to make 100 mile plus round trips for 20 treatments.

Have a nice few days away. 

Dave

User
Posted 12 Sep 2021 at 18:41

That is so true Dave, the best thing we could have done was to get the second opinion. And the best money ever spent on the PSMA pet scan. 
I don’t suppose we’re expecting miracles but we have so much more hope than we did before and more options. 
I’ve got to try this week to get the referral for the op as our GP has said they can’t refer out of the area! I’m going to email ccg & NHS England to see what they can do. Not sure if anyone has had this problem before?

 

User
Posted 12 Sep 2021 at 18:43

And yes we’re definitely lucky have Christie’s on our doorstep, it must be so difficult having to travel so far for treatment over a long period of time.

Thank you…it will be nice to get away from everything 

User
Posted 23 Nov 2021 at 20:12

Hello,

I get a bit confused with PSA scores and what they mean. Could anyone please explain 0.083 to me? I often see that <0.1 is undetectable….and although this number is I don’t think it is undetectable if that makes sense 🤷🏻‍♀️? Sorry if this is a really stupid question.

User
Posted 23 Nov 2021 at 21:33

That is a good score. The definition of undetectable is confusing. Strictly speaking a number with a < in front means below the limit of the machine used to to test it. So if a hospital bought a really old testing machine which couldn't measure PSA below 10 even your husband's original PSA of 8.2 would have been reported as <10 and hence on that machine it would have been classed as undetectable. Of course such a machine would be useless and whoever bought it should be sacked. About 20 years ago test machines were able to measure down to 0.1 so anything below that was <0.1 so undetectable. Newer machines were introduced capable of measuring down to 0.03 so on those machines undetectable was defined as <0.03  these machines can be described as ultrasensitive. 

The problem with ultrasensitive PSA tests is that they pick up tiny amounts of PSA created by adrenal glands so even women would have a detectable PSA. So now some hospitals have gone back to reporting anything below 0.1 as <0.1 even if they know exactly what the number is, to avoid stressing the patients. So your OH's PSA at 0.083 is delightfully low, and if it had been reported as <0.1 you would have been very happy. At his next test it may be 0.085 and that may cause some anxiety, but again if it were reported as <0.1 you would be happy.

All of my PSA tests whilst on HT were reported as <0.1 . I presume the hospital I was under had modern machines capable of reporting to two or three decimal places but they chose not to, as there is no point in having patients worry about an increase of 0.001 on a test.

The only time reporting to more accuracy than 0.1 may be relevant is for someone who has had a prostatectomy. A change from 0.03 to 0.08 might be a cause for concern. But for someone with a prostate on HT anything below 0.5 is good, particularly if it is falling staying the same or only rising slowly. For someone post RT and no longer on HT a figure under 2.1 is good again as long as it isn't rising rapidly.

So your OH's PSA of 0.083 is to all intents and purposes undetectable and if in three months time he is still on HT and it is still <0.1 it is still to all intents and purposes undetectable. All undetectable results should be celebrated so get down the Christmas markets and have a mulled wine.

 

Dave

User
Posted 23 Nov 2021 at 21:46

Thanks so much Dave for your detailed explanation, really helpful. 
Rob had blood tests for some other things but they reported PSA aswell on the report I received. I was a bit surprised it being that low to be honest. He had his 2nd prostap 3 injection today. 
His RARP is booked for just before Christmas so we better hurry with those mulled wines 😂 nerve wracking time of course but waited a fairly long time for this.

Hope you are doing well Dave and thanks again.

User
Posted 23 Nov 2021 at 22:04
Don't stress about undetectable PSA Elaine, it is irrelevant unless the man has had his prostate removed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2021 at 22:37

Thanks for your response Lyn. No for once I’m not stressing ha! I just wasn’t sure if I understood the numbers properly. We weren’t really expecting a psa result until after protatectomy.

Could I please ask if you know anything about CRP levels and if HT can affect this figure? 

User
Posted 24 Nov 2021 at 00:11
CRP is linked to so many things - high levels can be down to infection, liver damage, arthritis, rheumatism, etc. People who have had covid can have high CRP readings for a while, as can someone who has had a heart attack.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Nov 2021 at 00:25
Thanks Lyn.

I’ve emailed the gp surgery for more info.

Rob’s CRP was 2.6 in august and now 17.5….but it says satisfactory result next to it even though it is recommended to be <5

He’s never had any health worries before being diagnosed (which we are thankful for) so everything seems scary at the mo

User
Posted 24 Nov 2021 at 09:53

Interesting paper on PSMA scans after HT initiated, it looks like HT may actually increase the sensetivity of PSMA PET scans.
https://link.springer.com/article/10.1007/s00259-019-04529-8

Regarding the <0.1 result after HT but prior to treatment that is a very good indicator so all good news..

Edited by member 24 Nov 2021 at 09:56  | Reason: Not specified

User
Posted 24 Nov 2021 at 10:50
I’ll take a look at that, thanks Jonathan.

And yes fingers crossed it’s the start of things coming good 🤞🏼

User
Posted 24 Nov 2021 at 20:31

Getting a referal "out of area" is something the specialists can do.  I had the same problem, funding is the issue. NHS England agreed to pay and everything went ahead smoothly. My treatment was Brachytherapy and was not available in my area. Get cracking with those emails!  John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

 
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