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Surgery, chemo or what?

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User
Posted 10 Sep 2015 at 18:47

Hi everyone. I was diagnosed yesterday - PSA of 8, Gleason of 9, possible spread towards the bowel. Obviously I'm shocked (55 years old and pretty fit, no health problems before).

First, thanks to EVERYONE on this forum. Best thing for me has been to come here accidentally and read your voices, your advice, your strength. Really uplifting.

My question:  I'm going for bone scans and chest scans in the next ten days but at the moment they are saying that surgery is not likely. Probably hormone treatment. But I have seen some comments on this forum which say a) push for surgery and b) push for early chemo.

So should I push for these in your opinion? 

Second: a few years ago I took out a critical illness insurance and it should now pay out a good sum. If the NHS does not offer me surgery and/or chemo, should I try to use that money to get surgery and chemo privately? What would you do?

This may sound a bit wacky and scared... but hey, I feel wacky and scared.

Any advice gratefully received.

SJB

User
Posted 11 Sep 2015 at 00:29

It would seem you have had the TRUS Biopsy (Trans Rectal Ultra Sound - Image Guided). This is where cores are taken from the Prostate through the Rectum. The other Biopsy for PCa is a more elaborate Template Biopsy where rather more cores are taken and the hollow needles are pushed through a template and into the Prostate via the Perineum, the area between the Anus and the Scrotum.

Men usually say they find it helpful to read the 'TOOL KIT' which is found on the main part of this Charity web site. You can also have a copy sent to you. This gives a good basis for understanding, study and onward research about PCa.

Barry
User
Posted 13 Sep 2015 at 12:36

I can't tell you all how helpful and encouraging all your replies have been. I suppose what I was lacking was some key information and although the medics have been brilliant so far, what you have all told me here has been massively helpful and reassuring.

The good news (I think) is that yesterday I got a letter for an appointment with a specialist later this week, and he may well tell me exactly why surgery is not useful, but thanks to you all I now feel better informed about how it all goes.

So thanks again to all of you - I will update the forum on what happens in case it helps the next poor s*d.

User
Posted 18 Sep 2015 at 16:15

Hi SJB
Its just great that you are feeling calmer and accepting . I think that is " key " to everyone's journey on here to be honest . Bazza taught me that . All you want is answers , final decisions , certainties etc , but the treatment tends to drag on and you realise a year or more has passed and you are still no more certain . So calm is good mate .
Good luck with the bone scan results
Chris

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User
Posted 10 Sep 2015 at 22:12
Hi

First of all sorry that you have joined our club. But as you say, this forum is a very good source of information and support.

You need to wait for the scan results before planning next move. If cancer has not spread beyond the prostate then my understanding is robotic surgery and radiotherapy is best, if cancer has spread then no point in having surgery and recent results of Stampede trial indicate that starting with hormone treatment and chemo offer longest survival times. But everyone's case is different and the oncologist will give you best advice based on your specific circumstances. But if you want second opinion always ask.

Wishing the very best

Martin

User
Posted 10 Sep 2015 at 22:36

Hi SJB,

Sorry you join us because of PCa.

Naturally you are wondering about the best way forward and certainly you want to consider all the options that are open to you. However, you need to have all the tests and scans deemed necessary done and assessed in order that a full and individualized diagnosis can be made. You should then discuss with your consultant the best way forward. (You may have been told that surgery is unlikely because the cancer has spread beyond where it can be removed by by this method or for some other reason.) With respect, I think you are not in a position 'to push' for anything until your consultant discusses the options open to you. Your circumstances may be quite unlike others who may have various treatments.

You can if you so wish seek a second opinion on your diagnosis and treatment either on the NHS or privately.

It is quite usual these days for a case to be considered by a MDT (Multi Disciplinary Team), so various inputs are taken on board before the patient gets the full diagnosis and is advised about treatment possibilities 

Edited by member 11 Sep 2015 at 00:06  | Reason: Not specified

Barry
User
Posted 10 Sep 2015 at 22:41

Hello sjb.
Just to say welcome to the site.

You will receive lots of help and advice on here.

You say your request for advice makes you sound wacky and scared. Nothing new there for most of us hen we were newly diagnosed, so you are not odd in that respect.

This is a very scary time for you but really you can't plan anything until you know the full story.

All the best Sandra (whose husband John has also been treated for prostate cancer)

We can't control the winds - but we can adjust our sails
User
Posted 10 Sep 2015 at 22:53

Hi SJB sorry you have joined our group, you will have to wait for your results to know your options ,also take someone else with you as you may forget to ask or remember what was said , post your results and ask questions here no matter how strange they may seem . all the best Andy

Edited by member 11 Sep 2015 at 07:50  | Reason: Not specified

User
Posted 10 Sep 2015 at 23:12

Hi SJB

Agree with other posts - wait and see what the other tests reveal. Naturally you will feel, like the rest of us, scared and confused when first diagnosed ..... it's like a sledgehammer hitting you .... very hard! You're not wacky .... just demonstrating a natural and normal reaction.

You need facts and also good advice. Make sure you take notes and preferably take someone with you when meeting consultants etc. Ask lots of questions ...... over and over again if need be to make sure you understand what is being said and what your options are. Make sure you see an oncologist as well as a surgeon. Read the NICE regulations so you know your rights re. who you can see and what you should be offered ( https://www.nice.org.uk/guidance/cg175 ) .... and don't hold back if you feel your not getting the advice etc that your entitled to.

I know you are early in your diagnosis but personally I preferred to stay in control of my own future as far as possible and asked lots of questions, asked for lots of clarifications and sought advice from 'other' specialists where I could. Perhaps your insurance could help with that. I didn't go with my first consultants advice and I don't regret it in my case.

ATM your PSA is quite low (mine was 16 when first diagnosed) but your Gleason is quite high (mine was 7 when diagnosed). What sort of biopsy did you have?

Always take good care of you and yours ....  and keep speaking to others e.g. family and folk on this site.

dl

 

Originally Posted by: Online Community Member

Hi everyone. I was diagnosed yesterday - PSA of 8, Gleason of 9, possible spread towards the bowel. Obviously I'm shocked (55 years old and pretty fit, no health problems before).

First, thanks to EVERYONE on this forum. Best thing for me has been to come here accidentally and read your voices, your advice, your strength. Really uplifting.

My question:  I'm going for bone scans and chest scans in the next ten days but at the moment they are saying that surgery is not likely. Probably hormone treatment. But I have seen some comments on this forum which say a) push for surgery and b) push for early chemo.

So should I push for these in your opinion? 

Second: a few years ago I took out a critical illness insurance and it should now pay out a good sum. If the NHS does not offer me surgery and/or chemo, should I try to use that money to get surgery and chemo privately? What would you do?

This may sound a bit wacky and scared... but hey, I feel wacky and scared.

Any advice gratefully received.

SJB

User
Posted 10 Sep 2015 at 23:51

Thanks everyone - really helpful to talk to people who have been there.

I take the point about waiting and finding out what the other tests reveal. I'm definitely jumping the gun. But I am a bit like devon_lad:

"personally I preferred to stay in control of my own future as far as possible and asked lots of questions, asked for lots of clarifications and sought advice from 'other' specialists where I could. Perhaps your insurance could help with that. I didn't go with my first consultants advice and I don't regret it in my case."

I kind of feel I want to be ready. I agree with you, Man_with_PC, when you say "With respect, I think you are not in a position 'to push' for anything until your consultant discusses the options open to you" - yes absolutely. But I guess I am a bit spooked by some of the comments on this site by people who regret that they didn't do X or Y, or they were given crap advice, and I'm just trying to get ready. Maybe that is my control-freak way of dealing with it.

But thanks to you I can and will chill a bit and see what the scans tell me. 

Um, maybe then can someone tell me what you think about whether it is worth pushing for surgery?:-)

 

Thanks, SJB

User
Posted 10 Sep 2015 at 23:55

Thanks - you ask "What sort of biopsy did you have?"

Sorry, what do you mean by this? I thought all biopsies for this would be the same? I had the horrible one when they take 10-12 shots direct from the prostate. Is that what you mean?

User
Posted 11 Sep 2015 at 00:29

It would seem you have had the TRUS Biopsy (Trans Rectal Ultra Sound - Image Guided). This is where cores are taken from the Prostate through the Rectum. The other Biopsy for PCa is a more elaborate Template Biopsy where rather more cores are taken and the hollow needles are pushed through a template and into the Prostate via the Perineum, the area between the Anus and the Scrotum.

Men usually say they find it helpful to read the 'TOOL KIT' which is found on the main part of this Charity web site. You can also have a copy sent to you. This gives a good basis for understanding, study and onward research about PCa.

Barry
User
Posted 11 Sep 2015 at 07:19

Sjb, if the scans show that the cancer has already spread then it will depend where. If it has only spread to the bladder you might be able to spend your money on having the op and have some or all of your bladder removed at the same time. However, if it has escaped to one place then there is a really strong possibility that tiny cancer cells have also migrated elsewhere and surgery would be a complete waste of the money that you and your family might need for more pressing things later. So no, probably not worth pushing for surgery privately if the NHS doesn't consider you suitable for surgery.

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

User
Posted 11 Sep 2015 at 11:07

LynEyre, thanks for this full and frank answer.

My logic was that if I have a great fat prostate full of cancer, then surely better to remove it at once rather than leaving it to spread its nasty bits out further? Isn't that likely to prolong life?

I couldn't understand why they would NOT recommend surgery - is it because it has bad complications? Or is it simply that they feel it is not worth the money!! I would rather spend the money if it has any chance of a longer life.

But I understand that it must be more complicated than that. I was wondering if anyone else had had to make that choice and had good or bad reports on what happened?

User
Posted 11 Sep 2015 at 11:33

Hi SJB,

The most important thing for you to do, is take your time to let all of this news sink in, and take time to find out as much as you need to know to make informed decissions.

Prostate cancer is a pretty slow growing thing, and you can easily slow it right down with hormone treatment.

I was diagnosed with Gleason 9 aged 54, so I know where your at, I am still here at 62 wondering if my savings will last me into my 90's, because I am fitter than ever!

So you really are at the 'act in haste, repent at leisure' stage, you have months to learn as much as you feel you want to, and months to make your mind up.

:)

Dave

User
Posted 11 Sep 2015 at 12:45

Thanks very much indeed. That is a really great relief to hear.

It is one thing hearing it from the medics, but so much better to hear it from people like you who can tell your own experiences. I'll hang fire and find out more.

User
Posted 11 Sep 2015 at 19:14
Originally Posted by: Online Community Member

LynEyre, thanks for this full and frank answer.

My logic was that if I have a great fat prostate full of cancer, then surely better to remove it at once rather than leaving it to spread its nasty bits out further? Isn't that likely to prolong life?

I couldn't understand why they would NOT recommend surgery - is it because it has bad complications? Or is it simply that they feel it is not worth the money!! I would rather spend the money if it has any chance of a longer life.

But I understand that it must be more complicated than that. I was wondering if anyone else had had to make that choice and had good or bad reports on what happened?

I don't know how many hundreds of members I have watched on this forum but I can only think of one person who had surgery where it was known that there was spread beyond the immediate pelvic area although there has been a small scale bit of research where men with mets had the prostate removed to see whether they lived longer.

It is certainly not about money. The side effects of surgery can be life changing in themselves and it seems rather pointless to inflict those side effects on someone who is not going to be cured or live any longer as a result. Same with radiotherapy. For a man with mets, the pressing consideration is to starve the cancer cells or disrupt their replication wherever they are in the body rather than treat just the immediate area while the distant mets run riot.

Regardless of all the above, you are running ahead of yourself as you may not be in that situation. There are two members here who were thought only to have bladder mets and had this treated at the same time as the prostatectomy. If it is only locally advanced, you may be offered radiotherapy targeted at a wider section of the pelvic area than usual. Be patient and try not to second guess - waste of energy anticipating decisions that you may never have to face.

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

User
Posted 12 Sep 2015 at 11:13

Hi SJB,

Sorry that you have to be here but it is the best place for advice.

I was diagnosed with aggressive cancer confined to the prostate and offered hormone therapy and radio therapy.

All I can say is that when I was told that I could not have surgery and have my prostate removed it was because my prostate was too close to my bowel wall for the surgery to be completely effective as some cancer cells may be left afterwards or that to get all of the prostate the wall of my bowel may have been breached.

Apparently all prostates are in a slightly different position inside us and that has to be considered when deciding what is to be done.

I hope you get good results and offered the best treatment so keep pushing and phoning to stay in their faces it seems to be a good way of getting things done. It takes ages if you just leave it for them to contact you and fit into their plans rather than chase to get action

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 12 Sep 2015 at 13:00

yep you need to take a big breath and wait for the scan results, which will seem like forever, always have a pen and paper to write down what you have been told, its awhirl in the mind

am on hormone treatment myself have metastatic cancer, diagnosed may 2015, first months worst of my life.

was offered docetaxel chemo now told unless I have more spread may not get it, on post code lottery for this

been told different things on each visit, so hope yours goes better

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 Sep 2015 at 18:31

Hi Stephen,

When I was diagnosed back in 2007, the consensus seemed to be that Prostectomy was not an option for guys with Gleason 9, because no matter how sharp the scalpel, some microscopic cancer cells would inevitably break away during surgery and spread about the body via blood and lymph systems, going on to cause metstastacies (never could spell that word) all around the body.

The thinking was that with lower grade Gleason scores this didn't matter because the individual cells were not very cancerous, they were not as aggressive as Gleason 9's and 10's so didn't have the potential to cause so much trouble.

The idea was for Gleason 9's that you would have 6 months of HT to shrink the tumour and then give the whole thing a good blast of external beam RT, and keep the HT going for another couple of years, to give the tumour plenty of 'teddy' so to speak.

Now obviously science has moved on and I was recently offerred a prostectomy as a salvage treatment, however to my way of thinking there is something in the old science, the logic being that if you have Gleason 9 and it is contained within the capsule, it is really a good idea to keep it within the capsule?

I guess there may be some Gleason 9 guys on this site who have had surgery and can give you a more modern view of the pro'sand con's.

:)

Dave 

User
Posted 12 Sep 2015 at 19:00

Gosh its all so confusing ! I was offered surgery or Oncology in June . They both said they could fix me . I was officially G8 T3. At the last moment Oncology was removed and they advised surgery , only to find I was G9T4N1. I had spread already to Lymph and bladder , and all margins were positive. I can only sit back and believe they did what was right after their MDT meetings . Im not angry and have no reason to be.
But yes I was offered 3 months HT , followed by HDR Bracchy and RT ( 5 weeks ) and then 2 1/2 years HT. Not nice whichever way you look at it. I'll soon find out what fate has been dealt me after LRP and a recent Choline PET -CT scan .
Chris

User
Posted 13 Sep 2015 at 12:36

I can't tell you all how helpful and encouraging all your replies have been. I suppose what I was lacking was some key information and although the medics have been brilliant so far, what you have all told me here has been massively helpful and reassuring.

The good news (I think) is that yesterday I got a letter for an appointment with a specialist later this week, and he may well tell me exactly why surgery is not useful, but thanks to you all I now feel better informed about how it all goes.

So thanks again to all of you - I will update the forum on what happens in case it helps the next poor s*d.

User
Posted 17 Sep 2015 at 14:08

My route to surgery was straightforward and until I joined this site I never realised how wide and varied the subject of Prostate Cancer is. All that happened to me was that my GP noticed my PSA was rising, I had a biopsy and from that cancer was diagnosed. It came down to me to choose between surgery, or go for a radiotherapy/chemo type treatment. I saw both consultants and from that I chose surgery. What swayed me in the end was to be told, if I chose radiotherapy and the cancer came back I could not then have my prostate removed. If I chose surgery first and the cancer came back I could still possibly have a shot at radiotherapy. I'll know more when I see the surgeon at the end of this month.

I do not regret my surgery decision because I have had no problems since, no medication or anthing else to worry about, except that I now have a hernia. I've bought a truss which works and my lifestyle is back to my normal, hiking and off road running is now back on my agenda.

I still find it a novelty that I can now pee so easily and freely. Even up to a couple of years ago I knew every lay-by and gap in the hedge over the whole of southern England and all of them became my loos, it became amazingly depressing for me!

If my cancer has started to spread I will have to face that hurdle very soon, my latest blood test was done a couple of days ago.

User
Posted 18 Sep 2015 at 16:00

Thanks very much for this. It arrived while I was waiting to see the surgeon, so it helped me a lot to understand what he was discussing.

Just to report, in case it helps someone else.  The specialist was great, and explained things very clearly. He told me that surgery was not ruled out (because I am still relatively young at 55) but that they first wanted to do more tests to see how far it has spread.  So I had a bone scan today to see if it has got into the bones and will do more tests later to see if it has got into the ureters (which they suspect).

When I asked him directly about my life expectancy, he went through an online tool and we put all my data into it, and it said that 91% of men with my type and severity survive for 10 to 15 years more, assuming that all else is well. That at least made me feel a bit better, even if it is optimistic.... All in all he made me much calmer and more accepting, as I feel I am in safe hands.

So thanks for all your advice and massive support. I am much calmer now! Let's see what happens.

SJB

User
Posted 18 Sep 2015 at 16:15

Hi SJB
Its just great that you are feeling calmer and accepting . I think that is " key " to everyone's journey on here to be honest . Bazza taught me that . All you want is answers , final decisions , certainties etc , but the treatment tends to drag on and you realise a year or more has passed and you are still no more certain . So calm is good mate .
Good luck with the bone scan results
Chris

 
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