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User
Posted 26 Mar 2015 at 17:17

Hello, I wrote on here a few weeks ago about my 75 year old dad who was diagnosed with aggressive Prostate Cancer 6 weeks ago and had so much support and advice which I am so thankful for.  I've learned so much from this site! 

Just to recap, his PSA was 11.5 and Gleason Score was 4+5=9.

We finally had the results of his scans today after a torturous few weeks!  Thankfully his bone scan was clear but there looks to be a lymph node involved in the pelvis.  They said they couldn't be 100% sure if was Cancer or if it was swelling from the biopsy.  They also said that his kidney is blocked due to the prostate being very swollen.

They have started him on hormone tablets straight away and he'll be having hormone injections as well.  The consultant has referred him to an oncologist who will talk to him about clinical trials such as Stampede (I am pleased about this as I have heard it is worth looking at.)

He was a very friendly man but I just found his attitude quite negative.  My dad has always felt the same about him too.  He said to dad "I guess you want to know how long you've got?" or something like that and dad said "Not really" and he said "1 to 10 years".  I asked if there were any other treatments dad could have such as Radiotherapy and he said no. Dad asked about surgery and he said no because it's a very aggressive Cancer and a messy operation.

There have also been mistakes made.  In the letter we received with dad's initial diagnosis it stated that there was Cancer in 6 of 6 cores, but it is actually in 11 out of 12!  Also, apparently the Cancer was originally graded as 4+4 Gleason Score but then re-scored at 4+5.  I wonder why that happened as dad has only had one biopsy?

I asked about staging and he guessed at T3/4,N1,M0.  I asked if it would be classed as locally advanced or advanced and he said somewhere in between but he would err more towards advanced.  His PSA score was quite low as the Cancer is so aggressive which can happen sometimes apparently and it doesn't always reflect.

So basically we are under no illusions that dad has an aggressive Cancer but I wonder why it isn't being looked into further to see whether the lymph nodes are actually involved or not as surely this would make a difference to the treatment offered?  We are thinking it would be good to get a second opinion but not sure how to go about it.  Does anyone have any advice please?

Thanks in advance!

 

 

User
Posted 27 Mar 2015 at 00:24
Hi Chardonnay

I think the most important thing is to have confidence in your specialist and if you don't, then seek a second opinion. I wonder if the Elephant in the room here is your fathers age and not wanting to put him through aggressive treatments with the associated side effects, or the hospitals policy.

As regards the suspected lymph node involvement, the hormones should shrink these, which will show if they were cancerous, but if they don't shrink it maybe that this is not the case, so future scans will help determine this once the hormones have done their magic. The good news is there is no spread to the bones.

I was very similar to your father apart from age as I was 57 at diagnosis with a high gleason but a PSA of 99.4, and was told I would die of it , not with it. Now I don't mind plain speaking, in fact I admire it, as long as it is based on fact and not assumptions. I was told I had lymph node involvement and no spread to the bladder and the only treatment on offer was RT/HT so I did my research and sought out a well known specialist in PCa and opted for removal but had to go private, I had 32 lymph nodes removed and none were cancerous but there was bladder involvement, which was completely opposite to my previous diagnosis, so they don't always get it right. The point I would like to make is that regarding the gleason score change and the possible lymph node spread is that you are reliant on a persons interpretation of what they see, and no two people are the same and can make errors in judgement.

If you do go down the line of a second opinion then make sure they specialise In PCa, I search for the top PCa specialist in the field and came across an article in the Daily Mail listing the top 10 and research each one before I made my choice.

http://www.dailymail.co.uk/health/article-1325743/Who-best-surgeons-treating-prostate-cancer.html

Good Luck

Roy

Edited by member 27 Mar 2015 at 00:27  | Reason: Not specified

User
Posted 27 Mar 2015 at 18:33

Originally Posted by: Online Community Member

You can imagine how we felt and how I have subsequently felt, wishing I had pushed for a second opinion from the start. Sadly, it was too late for my partner.

Regards, Fiona.

Fiona,  I read this and felt for you, and sad for you, and for Neil.

BUT, hindsight, is not always necessarily a wonderful thing, not all the time.  You did, and would have done, and I do not doubt tried to do all that you could as far as you were aware, and so probably did Neil.  My view now, there is no point you beating yourself up about "what if's" and "maybes" not now.  Now is a time to look back and remember fondly.

There are many benefits to others of your posting now of your experiences.  

dave 

User
Posted 27 Mar 2015 at 06:39

Morning Chardonnay
When I read your post and before I read Roy's reply my first thought was probably your dad's age. IT may also be to do with his relative fitness.
Does your dad have other medical conditions which aggressive treatment for cancer might make worse?

Personally, if you are unhappy or have no confidence then approach either your GP or the hospital and seek another opinion.
The change in grading was possibly the result of a meeting by the Multidiscipline Team (MDT)

If you have no confidence, and the outcome further down the line is poor then you will always wonder whether that outcome would have been different had a different approach to the cancer been made in the first place.

As Roy says, these results are interpreted by experts but it doesn't mean that two experts will interpret them the same.

Good luck and best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Mar 2015 at 08:21

In retrospect I always wish I had sought a second opinion for my partner soon after his diagnosis. He had low PSA but very aggressive disease. Our first oncologist was not very amenable to discussion and all along I felt his treatment was far too conservative. Nine months later after Neil had broken his arm and scans I insisted on identified spread to liver and more bone involvement I paid for a second opinion. The second opinion consultant who I wish we had had from the start was spot on with clinical trials and up to date research. First thing he said was that PSA in our case was largely irrelevant and Neil should have had chemo with HT from the start. You can imagine how we felt and how I have subsequently felt, wishing I had pushed for a second opinion from the start. Sadly, it was too late for my partner.

So go with a second opinion if you are not happy, irrespective if your Dad's age, you need to feel you have had the best advice and options possible,

 

Regards, Fiona.

User
Posted 27 Mar 2015 at 09:59

I'm not sure about the consultant sharing a prognosis when it wasn't requested. Having said that I could have had a stab at that random prognosis.

It's not unusual to have the staging regraded. Some of the ambiguity will be because of the lymph node involvement and uncertainty about what that is.

As Roy says if it's Pca the HT will likely shrink it. I would have thought that RT of the pelvic area would be a possible treatment option taking in the lymph nodes based upon his dx, but I am not a medical professional.

He has referred your dad to an oncologist which is good. Before paying for a 2nd opinion why dont you discuss his dx with them. You could enquire about possible radical treatment at that point

Bri

User
Posted 27 Mar 2015 at 19:28

If you click on my name you will see my diagnosis details in Profile; not that dissimilar except for a higher psa.

The radiotherapy, although with side effects certainly gave me extra years. As has I suspect, but cannot prove, the diet changes.

So I'd definitely be going for a second opinion with a specialist in radiotherapy. I'd agree that surgery might be a bit too much but your Dad sounds fitter than many and would likely cope with R/T treatments. Usually considered most effective three to six months after start of the hormone treatments.

 

User
Posted 27 Mar 2015 at 20:22

I think the comments on here about second opinions have muddied the waters. Why are you considering requesting a second opinion now? Better to see the oncologist that dad has been referred to, and then think about a second opinion if needed after that, I would have thought. Could the urologist have just miscommunicated? He is probably not in a position to discount RT as it isn't his area so I am wondering if what he was trying to say was that he doesn't do RT rather than that dad couldn't have it.

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

User
Posted 27 Mar 2015 at 20:29

The other possibility is that they are thinking dad might meet the criteria for Stampede arm J which includes primary RT if he turns out to be node negative.

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

User
Posted 28 Mar 2015 at 07:38

I believe that if you do not have trust in your professionals you will never be happy with their reponses .

 

You need to find people with your area and speak with your local support group, here you will be able to ask personal questions direct to people who have gone through it. They will know the health professionals with in your area , their strengths & weakness .

 

I used both the forum and the support group received both positive & negative comments that made the decision.

 

I was surprised how many people who have recovered their personal words made me realise that prostrate cancer is not a killer more people survive than die.

 

But to recover you need the right attitude , your family needs the right attitude supported by good professionals (it does concern me your professional said 1 or 10 years, mine said very simply most men over 60 have prostate cancer when they die but do not die of prostrate cancer)

Good luck be positive.

 

Pinny

User
Posted 28 Mar 2015 at 08:10
Originally Posted by: Online Community Member

I think the comments on here about second opinions have muddied the waters. Why are you considering requesting a second opinion now? Better to see the oncologist that dad has been referred to, and then think about a second opinion if needed after that, I would have thought. Could the urologist have just miscommunicated? He is probably not in a position to discount RT as it isn't his area so I am wondering if what he was trying to say was that he doesn't do RT rather than that dad couldn't have it.

My thoughts exactly Lyn

Bri

User
Posted 29 Mar 2015 at 14:18

Fair comments from Lyn but I went on " That's what I thought about the RT and was surprised when I asked and the consultant said it wasn't possible.  "

I'd certainly be wanting to know why not and a second view from an Oncologist might put R/T back on the table via an independent view away from the initial consultant. If local nodes are positive R/T could still be viable although a higher risk of side effects of course. That was my initial R/T treatment of the surrounding area plus prostate.

User
Posted 30 Mar 2015 at 01:00

Stampede has a new arm which is for men who need RT but Dad might not meet the criteria. Most trials are completely randomised but that doesn't mean that there aren't trials within trials so there have been projects for men with bone mets, men who have already had chemo, men who haven't had chemo, men that have had all available treatments and men that are newly diagnosed and haven't had any treatment yet. What is important about it is that no patient can be randomised onto an arm that would give them less treatment than they need so it is certainly worth seeing that oncologist for a chat before you decide anything about a second opinion ( which would actually be your third opinion!)

Edited by member 30 Mar 2015 at 01:00  | Reason: Not specified

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

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User
Posted 27 Mar 2015 at 00:24
Hi Chardonnay

I think the most important thing is to have confidence in your specialist and if you don't, then seek a second opinion. I wonder if the Elephant in the room here is your fathers age and not wanting to put him through aggressive treatments with the associated side effects, or the hospitals policy.

As regards the suspected lymph node involvement, the hormones should shrink these, which will show if they were cancerous, but if they don't shrink it maybe that this is not the case, so future scans will help determine this once the hormones have done their magic. The good news is there is no spread to the bones.

I was very similar to your father apart from age as I was 57 at diagnosis with a high gleason but a PSA of 99.4, and was told I would die of it , not with it. Now I don't mind plain speaking, in fact I admire it, as long as it is based on fact and not assumptions. I was told I had lymph node involvement and no spread to the bladder and the only treatment on offer was RT/HT so I did my research and sought out a well known specialist in PCa and opted for removal but had to go private, I had 32 lymph nodes removed and none were cancerous but there was bladder involvement, which was completely opposite to my previous diagnosis, so they don't always get it right. The point I would like to make is that regarding the gleason score change and the possible lymph node spread is that you are reliant on a persons interpretation of what they see, and no two people are the same and can make errors in judgement.

If you do go down the line of a second opinion then make sure they specialise In PCa, I search for the top PCa specialist in the field and came across an article in the Daily Mail listing the top 10 and research each one before I made my choice.

http://www.dailymail.co.uk/health/article-1325743/Who-best-surgeons-treating-prostate-cancer.html

Good Luck

Roy

Edited by member 27 Mar 2015 at 00:27  | Reason: Not specified

User
Posted 27 Mar 2015 at 06:39

Morning Chardonnay
When I read your post and before I read Roy's reply my first thought was probably your dad's age. IT may also be to do with his relative fitness.
Does your dad have other medical conditions which aggressive treatment for cancer might make worse?

Personally, if you are unhappy or have no confidence then approach either your GP or the hospital and seek another opinion.
The change in grading was possibly the result of a meeting by the Multidiscipline Team (MDT)

If you have no confidence, and the outcome further down the line is poor then you will always wonder whether that outcome would have been different had a different approach to the cancer been made in the first place.

As Roy says, these results are interpreted by experts but it doesn't mean that two experts will interpret them the same.

Good luck and best wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Mar 2015 at 08:03

Hello Roy and Sandra.  Thank you very much for your replies!

Yes, I did wonder if it was to do with dad's age.  To answer your question Sandra, dad doesn't have any underlying medical conditions that we know of.  In fact, he is very fit for his age, which the consultant does know as dad has told him about the amount of running he does.  Dad goes to the gym 3 times a week and also runs regularly.  He has ran a few half marathons, his last one being in October.  However, he has been getting a bit more tired lately and getting a bit slower but still very fit for a 75 year old!  

I'm pleased you were able to find another specialist Roy and it's interesting to see that you had surgery in Birmingham.  Dad lives just south of Birmingham and we were considering trying to find someone in Birmingham.  That link you sent over is very useful so thank you very much for that.  We had considered that we may need to go private so that is something we are definitely going to look into.

I agree Sandra, if we don't do all we can to try to help dad now, we will always look back and wish we had done more.  Mum died two years ago from Bowel Cancer and it was our first experience with Cancer in our close family and we learned a lot from our experiences there.

Thanks again for your replies, they really are appreciated!

 

User
Posted 27 Mar 2015 at 08:21

In retrospect I always wish I had sought a second opinion for my partner soon after his diagnosis. He had low PSA but very aggressive disease. Our first oncologist was not very amenable to discussion and all along I felt his treatment was far too conservative. Nine months later after Neil had broken his arm and scans I insisted on identified spread to liver and more bone involvement I paid for a second opinion. The second opinion consultant who I wish we had had from the start was spot on with clinical trials and up to date research. First thing he said was that PSA in our case was largely irrelevant and Neil should have had chemo with HT from the start. You can imagine how we felt and how I have subsequently felt, wishing I had pushed for a second opinion from the start. Sadly, it was too late for my partner.

So go with a second opinion if you are not happy, irrespective if your Dad's age, you need to feel you have had the best advice and options possible,

 

Regards, Fiona.

User
Posted 27 Mar 2015 at 09:59

I'm not sure about the consultant sharing a prognosis when it wasn't requested. Having said that I could have had a stab at that random prognosis.

It's not unusual to have the staging regraded. Some of the ambiguity will be because of the lymph node involvement and uncertainty about what that is.

As Roy says if it's Pca the HT will likely shrink it. I would have thought that RT of the pelvic area would be a possible treatment option taking in the lymph nodes based upon his dx, but I am not a medical professional.

He has referred your dad to an oncologist which is good. Before paying for a 2nd opinion why dont you discuss his dx with them. You could enquire about possible radical treatment at that point

Bri

User
Posted 27 Mar 2015 at 18:10

Thanks Zarissa for taking the time to respond.  I'm so sorry to hear that it was too late for your partner.  I feel just like you that the treatment being offered is too conservative.  I just had a look at your profile and can see that like my dad, your partner's PSA was relatively low but the disease aggressive and that HT may not work.  That has strengthened my resolve to see if they can offer dad anything else.  It has to be worth a try!

Thanks for your reply Bri.  Yes the prognosis was very random and not of much use at all really!  How long is a piece of string basically!  Yes I can see why the ambiguity could be down to the possibility of lymph node involvement.   That's what I thought about the RT and was surprised when I asked and the consultant said it wasn't possible.  

Dad is up for trying a second opinion so we are all going to talk about it over the weekend and make a decision as to a way forward.  I feel in my gut that it is the right thing to do and don't want any regrets.

Thanks again to you both for taking the time to respond.

All the Best.

User
Posted 27 Mar 2015 at 18:33

Originally Posted by: Online Community Member

You can imagine how we felt and how I have subsequently felt, wishing I had pushed for a second opinion from the start. Sadly, it was too late for my partner.

Regards, Fiona.

Fiona,  I read this and felt for you, and sad for you, and for Neil.

BUT, hindsight, is not always necessarily a wonderful thing, not all the time.  You did, and would have done, and I do not doubt tried to do all that you could as far as you were aware, and so probably did Neil.  My view now, there is no point you beating yourself up about "what if's" and "maybes" not now.  Now is a time to look back and remember fondly.

There are many benefits to others of your posting now of your experiences.  

dave 

User
Posted 27 Mar 2015 at 19:28

If you click on my name you will see my diagnosis details in Profile; not that dissimilar except for a higher psa.

The radiotherapy, although with side effects certainly gave me extra years. As has I suspect, but cannot prove, the diet changes.

So I'd definitely be going for a second opinion with a specialist in radiotherapy. I'd agree that surgery might be a bit too much but your Dad sounds fitter than many and would likely cope with R/T treatments. Usually considered most effective three to six months after start of the hormone treatments.

 

User
Posted 27 Mar 2015 at 20:22

I think the comments on here about second opinions have muddied the waters. Why are you considering requesting a second opinion now? Better to see the oncologist that dad has been referred to, and then think about a second opinion if needed after that, I would have thought. Could the urologist have just miscommunicated? He is probably not in a position to discount RT as it isn't his area so I am wondering if what he was trying to say was that he doesn't do RT rather than that dad couldn't have it.

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

User
Posted 27 Mar 2015 at 20:29

The other possibility is that they are thinking dad might meet the criteria for Stampede arm J which includes primary RT if he turns out to be node negative.

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

User
Posted 28 Mar 2015 at 07:38

I believe that if you do not have trust in your professionals you will never be happy with their reponses .

 

You need to find people with your area and speak with your local support group, here you will be able to ask personal questions direct to people who have gone through it. They will know the health professionals with in your area , their strengths & weakness .

 

I used both the forum and the support group received both positive & negative comments that made the decision.

 

I was surprised how many people who have recovered their personal words made me realise that prostrate cancer is not a killer more people survive than die.

 

But to recover you need the right attitude , your family needs the right attitude supported by good professionals (it does concern me your professional said 1 or 10 years, mine said very simply most men over 60 have prostate cancer when they die but do not die of prostrate cancer)

Good luck be positive.

 

Pinny

User
Posted 28 Mar 2015 at 08:10
Originally Posted by: Online Community Member

I think the comments on here about second opinions have muddied the waters. Why are you considering requesting a second opinion now? Better to see the oncologist that dad has been referred to, and then think about a second opinion if needed after that, I would have thought. Could the urologist have just miscommunicated? He is probably not in a position to discount RT as it isn't his area so I am wondering if what he was trying to say was that he doesn't do RT rather than that dad couldn't have it.

My thoughts exactly Lyn

Bri

User
Posted 29 Mar 2015 at 14:18

Fair comments from Lyn but I went on " That's what I thought about the RT and was surprised when I asked and the consultant said it wasn't possible.  "

I'd certainly be wanting to know why not and a second view from an Oncologist might put R/T back on the table via an independent view away from the initial consultant. If local nodes are positive R/T could still be viable although a higher risk of side effects of course. That was my initial R/T treatment of the surrounding area plus prostate.

User
Posted 29 Mar 2015 at 20:13

Hi, sorry for the delay in replying but I just wanted to say thank you all of your replies.  They have certainly given me food for thought.  It may be that we have jumped the gun with wanting to get a second opinion too quickly.  My mum died from Bowel Cancer two years ago and we often wished that we'd looked into things more.  We are all just desperate to help dad and sometimes you have a knee jerk reaction but need to go about things the right way, I know.

Rob, it does sound like RT may be a suitable treatment in dad's case.  It may be that I'd got it wrong when I mentioned it to the Consultant but I had thought that he said HT would be the only option, along with maybe one of the trials.  It's good to see how well you have done after being diagnosed with the same Gleason score as dad.

Lyn, the Stampede trial was mentioned as a possibility but I was under the impression that you were given an arm at random, so dad could still end up with just HT.  Have I got that wrong?

I've spoken to dad and he had already arranged for his GP to give him a call on Tuesday with the view to getting a second opinion but he is now going to see what the doctor says as to whether it would be better to wait to see the oncologist first.

This is a difficult journey and it can be so hard to know what to do for the best.  Hopefully one way or another we will get the best treatment for dad.

All the best to you all and thanks again for taking the time to reply.

User
Posted 30 Mar 2015 at 01:00

Stampede has a new arm which is for men who need RT but Dad might not meet the criteria. Most trials are completely randomised but that doesn't mean that there aren't trials within trials so there have been projects for men with bone mets, men who have already had chemo, men who haven't had chemo, men that have had all available treatments and men that are newly diagnosed and haven't had any treatment yet. What is important about it is that no patient can be randomised onto an arm that would give them less treatment than they need so it is certainly worth seeing that oncologist for a chat before you decide anything about a second opinion ( which would actually be your third opinion!)

Edited by member 30 Mar 2015 at 01:00  | Reason: Not specified

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

User
Posted 30 Mar 2015 at 08:07

Thanks for the info Lyn.  That's really useful!

 
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