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User
Posted 24 Oct 2015 at 12:06
Hi everyone. Going to see consultants on Tuesday for full results of MRI scan etc. Will discuss what options I have. I am compiling a list questions and would appreciate any ideas from the forum regarding what I should be asking as no doubt I will have missed something. Cheers Sandy.
User
Posted 25 Oct 2015 at 23:05

Hi Sandy,

Like you, I was diagnosed with Gleason 9 at 54, I am still here, going strong at 62.

Hormone therapy is a good starting point, it's not fun, but it tends to stop your tumour growing and give you time to research the various options and time to consider the pro's and cons of more radical treatments.  So if your Consultant suggests HT you might be well advised to go along with it.

The other thing to bear in mind is science is progressing faster than ever, many new treatment options are becoming available, and a lot of the orthodoxies we take for granted are changing.

I was 'lucky' in that my cancer was contained within the capsule, which meant I could have radiotherapy.  At the time I was told you can only have radiotherapy below the diaphram once, and if you have it for prostate cancer, you cannot then have it again if you later develop bowel cancer, kidney cancer etc.  That was held to be true at the time and no one on this site would have disagreed.

But radiotherapy didn't work for me, in the sense that five years later my PSA was rising again, but guess what I have just had radiotherapy again, (salvage HDR Brachytherapy to be precise).  A form of treatment unavailable 5 years ago. Whether it will be any more successful than the first blast remains to be seen, but the important thing is that the treatment is keeping me alive, 8 years on and I am still enjoying life and planing next years holiday.

So the important thing is to do your homework, learn as much as you can about treatment options, and don't worry too much about the long term, because there will be new treatment options coming along, so pick what you think is best and get on with life, adopt the philosophy that 'I've got cancer, but cancer hasn't got me!'.

:)

Dave  

 

User
Posted 26 Oct 2015 at 19:32

Generally speaking, it is true - radiotherapy makes the prostate too gloopy for surgery later so very few surgeons are willing to give it a go. However, data shows that RT as a primary treatment is just as successful as surgery and with possibly less side effects in the short or medium term so don't be disappointed if that is what is recommended to you.

The concept of choosing a treatment based on what would be possible if it failed is a flawed concept - statistically, if the primary treatment fails and salvage treatment is needed then the chance of getting a cure is significantly reduced whichever way round you do it. The idea is to choose the primary treatment that is most likely to succeed, whether that is surgery, RT/HT, brachy or surgery + adjuvant RT.

Good luck tomorrow

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

User
Posted 24 Oct 2015 at 20:36
Hi Sandy

We all understand how difficult it is to think clearly at a time like this. It is difficult to know what to ask.

I would ask about exact staging, which is a number followed by letters relating to how for the cancer has spread. For example

T 3b, N1 M0. You already have the last M0 as you have no bone spread, so that is a good start!

The T refers to the spread around the gland and the N as to whether there is any node involvement.

Ask about the treatments that are available. You may well be in the ' cure ' camp and have a choice of treatments, if that is the case ask if a multi disciplined team will be discussing your case.

If you do have a choice of prostectomy or RT, ask of you can meet the urologist and the oncologist to discuss the options.

Ask about side effects of any treatment.

Once you have an exact diagnosis, I suggest that you come back to the site for advice and if you haven't already get the toolkit from this site ( download or by post) and then you can home in on the parts relevant to you.

Also ask are you eligible for any trials. I know that this seems like a lot to take in at the moment, but with these you get additional monitoring and access possibly to new treatments, on top of the standard treatments. many of us on here can advise further if you are eligible.

Good luck, others will be along with more points to consider soon, I am sure.

All the best

Alison

User
Posted 25 Oct 2015 at 08:39

Hello Sandy and welcome if I haven't already said it before.

Agree with everything Alison says.

If you haven't already got the toolkit then it's probably too late to get a hard copy for the appointment Tuesday but you can still view it online and let it help you form questions to ask.

The other obvious thing is to have notebook and pen and preferably somebody with you.

Good luck on Tuesday.

I hope the outcome is the best it can possibly be

Edited by member 26 Oct 2015 at 09:15  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 25 Oct 2015 at 08:45

Hi Sandy think Alison has covered it well may be a idea to record conversation (on phone) as its hard to remember all that is said good luck with the results on Tuesday Andy

User
Posted 25 Oct 2015 at 22:40

Sandy

As you are a Gleason 9 at aged 55 I would be asking how hard can we hit it and with what combination of treatments. That's on the basis you're prepared for whatever side effects that might incur.

Ray

User
Posted 26 Oct 2015 at 17:23

Hi Sanders, I will repeat what I said to you on a previous thread - it will be worth asking the docs what the point is of you going through major surgery if you are going to need radiotherapy anyway. Double side effects are bearable but it seems a shame to put yourself through it if there is no benefit

Edited by member 26 Oct 2015 at 17:23  | Reason: Not specified

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

User
Posted 26 Oct 2015 at 19:53

Good luck tomorrow Sandy

We can't control the winds - but we can adjust our sails
User
Posted 26 Oct 2015 at 23:24

Hi Sandy,

I do not want to overburden you with too many unnecessary worries, but

Back in the 'old days' ie 2007 when I was first diagnosed, the consensus was that prostectomy was restricted to those with lower Gleason grades, the theory was that no matter how sharp the scalple, during surgery some cancer cells would inevitablly break loose and get into the blood stream, and being aggresive little Gleason 9's they were likely to latch on to something somewhere in the body and form a secondary tumour.  It is for that reason that I had radiotherapy, it was the only thing I was offerred, at that time I was considered too risky for prostectomy.

BUT, and it is a big BUT, as I said in my earlier post, science moves on and new discoveries consign yesterday's orthodoxies to the bin.

AND only last year Professor Hoskins suggested that I should consider a prostectomy as an alternative to salvage brachytherapy, my first blast of RT having failed, so I am not too sure that the concept that you cannot have prostectomy after radiotherapy is still true?

SO, putting all of this into some sort of logic, do not assume that prostectomy is necessarilly any better/lower risk than radiotherapy, your options would seem to be a) find a good doctor who you trust and do what he says, or b) do lots of research yourself. 

Sorry if I am posing more questions, when I should be providing answers, but this cancer business is hellishly complicated.

:)

Dave 

User
Posted 27 Oct 2015 at 17:15

Hi Sanders
I'm a relative newbie and you can click my profile if you want . I have had RP and was PSA 43 G9 T4 and Lymph spread and now need HT / RT . It was hard at the time to make a decision between surgery or Oncology . And the decision was taken away and I was forced to have surgery in the end . They didn't think my cancer was quite so aggressive and advanced . BUT , if I knew I had to have HT/RT anyway , then I would not have put myself through surgery . You could potentially have two more years of sexual normality by avoiding surgery , if that is something that is important to you .

User
Posted 27 Oct 2015 at 17:20

Hi Sandy,

No need to be downhearted, I believe what you are being offerred is designated 'curative' rather than 'palliative', which is a nice position to be in.

The side effects of the standard external beam radiation are not too bad if you prepare yourself, check out the merits of exercise and a low fibre diet etc.

Some hospitals are already geared up to provide HDR Brachytherapy instead of external beam radiotherapy, and it is relatively mild so far as side effects are concerned, quite an easy alternative.

In earlier posts you were worried about having a fall back plan, the beauty of recent developments is that if you have external beam radiotherapy, and years later PCa raises its ugly head again, then you can give it a second blast with HDR Brachytherapy.

So even if they don't come back and offer you prostectomy there are still plenty of reasons to be cheerful?

:)

Dave      

Show Most Thanked Posts
User
Posted 24 Oct 2015 at 20:36
Hi Sandy

We all understand how difficult it is to think clearly at a time like this. It is difficult to know what to ask.

I would ask about exact staging, which is a number followed by letters relating to how for the cancer has spread. For example

T 3b, N1 M0. You already have the last M0 as you have no bone spread, so that is a good start!

The T refers to the spread around the gland and the N as to whether there is any node involvement.

Ask about the treatments that are available. You may well be in the ' cure ' camp and have a choice of treatments, if that is the case ask if a multi disciplined team will be discussing your case.

If you do have a choice of prostectomy or RT, ask of you can meet the urologist and the oncologist to discuss the options.

Ask about side effects of any treatment.

Once you have an exact diagnosis, I suggest that you come back to the site for advice and if you haven't already get the toolkit from this site ( download or by post) and then you can home in on the parts relevant to you.

Also ask are you eligible for any trials. I know that this seems like a lot to take in at the moment, but with these you get additional monitoring and access possibly to new treatments, on top of the standard treatments. many of us on here can advise further if you are eligible.

Good luck, others will be along with more points to consider soon, I am sure.

All the best

Alison

User
Posted 25 Oct 2015 at 08:39

Hello Sandy and welcome if I haven't already said it before.

Agree with everything Alison says.

If you haven't already got the toolkit then it's probably too late to get a hard copy for the appointment Tuesday but you can still view it online and let it help you form questions to ask.

The other obvious thing is to have notebook and pen and preferably somebody with you.

Good luck on Tuesday.

I hope the outcome is the best it can possibly be

Edited by member 26 Oct 2015 at 09:15  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 25 Oct 2015 at 08:45

Hi Sandy think Alison has covered it well may be a idea to record conversation (on phone) as its hard to remember all that is said good luck with the results on Tuesday Andy

User
Posted 25 Oct 2015 at 22:40

Sandy

As you are a Gleason 9 at aged 55 I would be asking how hard can we hit it and with what combination of treatments. That's on the basis you're prepared for whatever side effects that might incur.

Ray

User
Posted 25 Oct 2015 at 23:05

Hi Sandy,

Like you, I was diagnosed with Gleason 9 at 54, I am still here, going strong at 62.

Hormone therapy is a good starting point, it's not fun, but it tends to stop your tumour growing and give you time to research the various options and time to consider the pro's and cons of more radical treatments.  So if your Consultant suggests HT you might be well advised to go along with it.

The other thing to bear in mind is science is progressing faster than ever, many new treatment options are becoming available, and a lot of the orthodoxies we take for granted are changing.

I was 'lucky' in that my cancer was contained within the capsule, which meant I could have radiotherapy.  At the time I was told you can only have radiotherapy below the diaphram once, and if you have it for prostate cancer, you cannot then have it again if you later develop bowel cancer, kidney cancer etc.  That was held to be true at the time and no one on this site would have disagreed.

But radiotherapy didn't work for me, in the sense that five years later my PSA was rising again, but guess what I have just had radiotherapy again, (salvage HDR Brachytherapy to be precise).  A form of treatment unavailable 5 years ago. Whether it will be any more successful than the first blast remains to be seen, but the important thing is that the treatment is keeping me alive, 8 years on and I am still enjoying life and planing next years holiday.

So the important thing is to do your homework, learn as much as you can about treatment options, and don't worry too much about the long term, because there will be new treatment options coming along, so pick what you think is best and get on with life, adopt the philosophy that 'I've got cancer, but cancer hasn't got me!'.

:)

Dave  

 

User
Posted 26 Oct 2015 at 10:33

Well done dave, thats just the sort of "realistic" post you want to hear.

Hope all goes well Sandy on Tuesday.

Stay Strong

User
Posted 26 Oct 2015 at 11:24
Thanks to all who replied. Dave I really appreciate your input as we seem to be similar in our diagnoses. Especially like your saving "I have cancer but cancer doesn't have me". Good to see that you are still active after the past few years. I have an idea of what treatment that I am going to go for, if offered, that being removal and radiotherapy. This was advised by specialist nurse. Thanks again to all, will post my outcome tomorrow after meeting with consultants etc.
User
Posted 26 Oct 2015 at 17:23

Hi Sanders, I will repeat what I said to you on a previous thread - it will be worth asking the docs what the point is of you going through major surgery if you are going to need radiotherapy anyway. Double side effects are bearable but it seems a shame to put yourself through it if there is no benefit

Edited by member 26 Oct 2015 at 17:23  | Reason: Not specified

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

User
Posted 26 Oct 2015 at 18:37

Hi Lyn

One of the questions that I will be asking the consultants is the one you raised previously about radiotherapy post surgery.

When I spoke to the specialist nurse she suggested that the best way would be this route as it seems that the cancer (T3b) has started to protrude outwith the prostate but not to any of the nodes yet, she did say that the seminal vesicles would probably have to be removed as well. The specialist nurse gave me the information when I asked her as the time was passing far too slowly. The doctor wouldn't give any information over the phone.  

The stage of cancer and how far it has spread has still to be confirmed by the consultants, this to be done tomorrow when we meet up to discuss treatment/surgery. 

Like everyone out there I only want to get rid of it if possible, I have been told if you get radiotherapy first and it doesn't work then you may not be able to get the prostate removed as it would become difficult for the surgeons to get access to it, don't know if this true but it one of the questions that I will be asking tomorrow.

Will keep you informed.

Sandy

User
Posted 26 Oct 2015 at 19:32

Generally speaking, it is true - radiotherapy makes the prostate too gloopy for surgery later so very few surgeons are willing to give it a go. However, data shows that RT as a primary treatment is just as successful as surgery and with possibly less side effects in the short or medium term so don't be disappointed if that is what is recommended to you.

The concept of choosing a treatment based on what would be possible if it failed is a flawed concept - statistically, if the primary treatment fails and salvage treatment is needed then the chance of getting a cure is significantly reduced whichever way round you do it. The idea is to choose the primary treatment that is most likely to succeed, whether that is surgery, RT/HT, brachy or surgery + adjuvant RT.

Good luck tomorrow

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

User
Posted 26 Oct 2015 at 19:53

Good luck tomorrow Sandy

We can't control the winds - but we can adjust our sails
User
Posted 26 Oct 2015 at 23:24

Hi Sandy,

I do not want to overburden you with too many unnecessary worries, but

Back in the 'old days' ie 2007 when I was first diagnosed, the consensus was that prostectomy was restricted to those with lower Gleason grades, the theory was that no matter how sharp the scalple, during surgery some cancer cells would inevitablly break loose and get into the blood stream, and being aggresive little Gleason 9's they were likely to latch on to something somewhere in the body and form a secondary tumour.  It is for that reason that I had radiotherapy, it was the only thing I was offerred, at that time I was considered too risky for prostectomy.

BUT, and it is a big BUT, as I said in my earlier post, science moves on and new discoveries consign yesterday's orthodoxies to the bin.

AND only last year Professor Hoskins suggested that I should consider a prostectomy as an alternative to salvage brachytherapy, my first blast of RT having failed, so I am not too sure that the concept that you cannot have prostectomy after radiotherapy is still true?

SO, putting all of this into some sort of logic, do not assume that prostectomy is necessarilly any better/lower risk than radiotherapy, your options would seem to be a) find a good doctor who you trust and do what he says, or b) do lots of research yourself. 

Sorry if I am posing more questions, when I should be providing answers, but this cancer business is hellishly complicated.

:)

Dave 

User
Posted 26 Oct 2015 at 23:43

DK, after all these years did you forget that naming professionals is not allowed?

If you ever get to the point of having the op, you will be only the third person I have heard of. Most surgeons are far too concerned about the impact it would have on their league tables of outcomes/side effects

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

User
Posted 27 Oct 2015 at 00:52

Hi Lyn,

I am sorry, I didn't realise we had such a rule, are there others I should be aware of?

:)

Dave

User
Posted 27 Oct 2015 at 08:10
Thanks Dave. The prostate removal was suggested by pc nurse but I know from doing my research that by having a high gleason score this may not be an option. Will find out shortly this morning, Totally dreading the outcome. I will let you know how I get on. Sandy.
User
Posted 27 Oct 2015 at 11:01
Originally Posted by: Online Community Member
Hi Lyn,

I am sorry, I didn't realise we had such a rule, are there others I should be aware of?

:)

Dave

The rules are stated when you first join but in your case that is so many years ago it is understandable that you might not remember. This new hosting arrangement for the forum means that all of our posts are now open to public viewing (through Google for example) so I guess it is important that nothing is written that could cause any claims for libel or slander. The only time we can name a doctor or nurse is if we are quoting something they have published or is already public knowledge (like when Prof De Bono publishes the findings of research or Chris Eden speaks at the international PCa conference etc)

Interestingly, the membership rules also say that we must not name hospitals or GP practices etc but I think we all ignore the naming hospital bit. My guess though is that if a member posted about poor care at a particular hospital the moderators would remove the name of the hospital just in case. The only other rules I can remember are about using offensive language, making offensive comments about each other, spamming/trolling or joining to promote a particular company (like the American company that joined last week and then posted a link to alternative treatments on Julie's thread)

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

User
Posted 27 Oct 2015 at 12:40

Hi all, just a wee update from my meeting with the consultant today.

Just as I thought all samples were reading high on the cancer front with a Gleason score of 9. all samples taken were found to be cancerous and 40% of prostate affected.

Bone scan clear, MRI scan not showing any damage to surrounding area although it has started to protrude from the prostate, at least some good news.

Treatment offered was limited to HT for 6 months (2 injections) 1 per 3 month period followed by radical radiotherapy.

I asked about surgery but was informed that due to the aggressiveness of the cancer this may not be available to me, but the consultant would contact the surgeons to see if this could be an option.

I thought the surgery route would have been discussed at the team meeting last week, but anyway the surgery on its own will not be a cure as I would still require RT to clear up any residue left behind. Need to wait another 2 weeks for information from surgeon to see if this is possible.

As you stated Lyn why go through a double douse of side effects if the outcome could still be the same.

I had my mind set for surgery but I am now thinking on HT/RT. Totally confused now.

Another couple of weeks of waiting, just seems to be dragging on and on.

Sandy.

 

User
Posted 27 Oct 2015 at 16:51

Hello Sandy
Sorry the news wasn't better but at least you (sort of) know where you stand now.

It's a real nuisance having to wait around when you just want something done and dusted isn't it.

Hope you hear back from them sooner rather than later

We can't control the winds - but we can adjust our sails
User
Posted 27 Oct 2015 at 17:05
Thanks Johsan. Yeah it's the waiting game that is the most annoying part. Had originally been told that surgery would be best, but that seems to have been taken away now. Hormone treatment looks the way ahead ,deep joy. Can only look forward now.
User
Posted 27 Oct 2015 at 17:15

Hi Sanders
I'm a relative newbie and you can click my profile if you want . I have had RP and was PSA 43 G9 T4 and Lymph spread and now need HT / RT . It was hard at the time to make a decision between surgery or Oncology . And the decision was taken away and I was forced to have surgery in the end . They didn't think my cancer was quite so aggressive and advanced . BUT , if I knew I had to have HT/RT anyway , then I would not have put myself through surgery . You could potentially have two more years of sexual normality by avoiding surgery , if that is something that is important to you .

User
Posted 27 Oct 2015 at 17:20

Hi Sandy,

No need to be downhearted, I believe what you are being offerred is designated 'curative' rather than 'palliative', which is a nice position to be in.

The side effects of the standard external beam radiation are not too bad if you prepare yourself, check out the merits of exercise and a low fibre diet etc.

Some hospitals are already geared up to provide HDR Brachytherapy instead of external beam radiotherapy, and it is relatively mild so far as side effects are concerned, quite an easy alternative.

In earlier posts you were worried about having a fall back plan, the beauty of recent developments is that if you have external beam radiotherapy, and years later PCa raises its ugly head again, then you can give it a second blast with HDR Brachytherapy.

So even if they don't come back and offer you prostectomy there are still plenty of reasons to be cheerful?

:)

Dave      

User
Posted 27 Oct 2015 at 20:30

Hi all

I'm not really downhearted Dave just a little confused that one person tells you that surgery is the best way forward only for another to tell you that this may not be possible, It's true that at least I am in the curative category unlike others out there who must be suffering a lot more than myself.

Will ask about HDR Brachytherapy when I meet up with the ucologist at cancer clinic in a couple of weeks to see if this possible. 

Chris I read your timeline and it seems such a long journey for you and your family to take, and I appreciate your comment about surgery and 'if only you knew better at the time'. As it is a certainty that I also would need RT/HT even with the removal, hence I am now going down the route of HR/RT. Didn't really want to go down this route as first option due to the fact of the hormonal side of things but it now seems my best and probably only option. Also the sex life side is very important to me, I know that there are still side effects with RT.

Sex life has taken a bit of a battering in the past couple of months since being diagnosed due to biopsy, blood etc. Need to get back on track with that side of things and hope the side effects of HT/RT don't kill it off completely.

Also thanks to Lyn for making me take a step back and rethink surgery as against HT/RT, it made me reassess the pros and cons.

Like I posted earlier the consultant sent a request to the surgeon to see if surgery was possible. I could've started HT today but decided to wait a few days for confirmation that surgery would not be possible, at least then there would be no option.

Ah decisions decisions.

 

Sandy 

User
Posted 27 Oct 2015 at 21:36

Hi Sandy

We all don't suffer the same from side effects so this is just me. I'm now 11 years post RT - 7 years post HT. On a scale of 1 - (poor) to 10 then sex scores 2; incontinence 10 although that comes with frequency issues; bowel score 9.

Even if surgery was deemed feasible at the time I still would have opted for RT/HT on the basis why have 2 treatments. But then although forewarned I didn't except the long term issues of RT/HT.

Think carefully on what will give the most chance of a cure or longer term control.

Ray

User
Posted 27 Oct 2015 at 22:54

Hi Sandy,

As a sufferer of PCa you are entitled to Viagra and/or Cialis etc, but often GP's need prodding before they will issue a prescription, so if I was you I would get off to your GP and get some soon.

Personally I found them a great help in the first few months on HT, although it has to be said that eventually HT tends to kill off your desire.

However it isn't permanent, I do not know how long your Consultant intends giving you HT, in my case it was 3 years in total, and I think the consensus is that you should stay on HT for at least one year after last session of RT?

If you want to understand the science behind it look up 'adjuvant hormone therapy'.

After I had finished 3 years of HT it took a good 12 months before I regained anything like full sexual vigour, and even then I could never guarantee a quality performance, but hey ho, anything is better than nothing.

I think the problem is we tend to look back on our youth, compare our current performance and blame PCa for the difference, if I am honest my powers had been gradually declining long before I was diagnosed. 

Best of luck.

:)

Dave 

User
Posted 27 Oct 2015 at 23:17
Cheers Dave

Your right if we are honest with ourselves we are not as virile as e were in our younger days.

The consultant recommended 6 months HT then 7 weeks RT followed by another 2 years HT.

Just not looking forward to moobs, plan to up my exercises at the gym to try and stave off the weight gain etc.

It's good to hear of others out there going through the same, although it would be better if we didnt need to be here.

Really good support and knowledge.

Sandy

 
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