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Advice before seeing oncologist

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User
Posted 10 Mar 2017 at 17:00

Hello all

My husband was diagnosed with prostate cancer in December (picked up during a rectal exam as PSA not particularly high c. 5) and had a non-nerve sparing RP in early January and has recovered well.  He is 63, semi-retired. His follow-up appointment was last week.  He was told that his Gleason Score had gone up from 8 pre-op to 9 (4+5), T3B, surgical margins negative, lymph nodes 3/13 positive, staging T3b N1.  The good news was that his PSA had gone down to <0.03. He has an oncology appointment in 10 days time and we would welcome advice about what to expect and what to ask. Despite being generally fit and healthy, he has had a history of recurrent ulcerative colitis since he was 26.  This means he cannot have radiotherapy in the pelvic area.  We know chemo and hormone therapy may be suggested and possibly targeted radiotherapy if there is spread outside the pelvic area, but assume that might be in the future if there is no evidence of spread to elsewhere in the body at the moment, according to the PSA.  Advice and or the experiences of others will help us to prepare for this very important appointment.

Anne

User
Posted 10 Mar 2017 at 23:47

Hello Anne,

Welcome to the forum, though sorry for the reason that brings you here.

Although we could provide some general advice on what for example to expect and how to prepare for say RT or Chemo, it is not really possible for us to say and speculate on what plan the oncologist will propose. Not only do oncologists sometimes favour different approaches, some being more proactive than others but this may be necessary where the patient has other problems or is dictated by other factors in an individual case.

Hopefully, there is no further spread other than was found when your husband's Prostate was removed and presumably perceived in scans. The fall in PSA is welcome but you should be aware that not all types of Prostate Cancer, of which there are many, demonstrate high PSA in affected areas or indeed cancer cells are so concentrated as to necessarily show up on scans. Often it is a matter of just waiting to check on an individual's response to a recommended treatment and if this is not working in the short or long term try something else.

Barry
User
Posted 11 Mar 2017 at 12:09

Hi Anne

So sorry that you are in this situation. Do hope that the consultation at least makes your options clearer and gives you a good dollop of hope.

I asked a similar question on the forum some while back andwas given a very useful list of questions to ask (and told to write down the answers):

1. What are the treatment options? 

2. In each case, what will be the potential benefits and how rapidly will it be effective?

3. How long is it likely to be effective? (best-case scenario so that we stayed positive!)

4. When will it start? How, where and how frequently is it administered?

5. What are the likely side effects and what could be done to lessen them?

This was a good starting point although the conversation wandered off point several times of course. I then came back on to the forum and asked people for their specific experiences of the options we'd been recommended. That was really helpful, particularly for cheering us up since there are so many determined battlers on this site who are giving the disease a real run for its money.

Plus, if you haven't already downloaded the Toolkit I do recommend it - very clear and thorough.

Good luck. Do let us know how you get on.

Hugs

Eleanor

 

User
Posted 13 Mar 2017 at 00:45

Hi Anne

Welcome and all the best in the coming weeks. I can't add much more than Eleanor. You seem to have in all in hand, do keep diary / notes.   See my profile for more background about me.

As you no doubt realise the next PSA result is key, up until them no one knows what has been accomplished.  There's no reason this won't be <0.01 undetectable, everything removed.    You are then into another decision making process and take further advice.   However cross each bridge , as it arrives.    

There is a product see http://www.spaceoar.com/what-is-spaceoar/    I know little about it and don't know if available on NHS. (or maybe not relevant).      

  You could ask in more detail about that product (or similar) ,  tumour(s) position, size and which lymph nodes, to get a better understanding of the 'overall' picture. Hopefully husband continues to recover well and temporary move goes to plan.     

Gordon

 

 

 

User
Posted 13 Mar 2017 at 08:50

With an upgrade to T3b and N1 I think the doctors will say it is likely he would need further treatment at some point. If RT is off the table then the question will be how long do you wait before starting HT - at the appointment I would want to know how far from the prostate the affected nodes were and whether the RT shielding gel is available in your area yet

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

User
Posted 13 Mar 2017 at 13:18
Originally Posted by: Online Community Member
Thanks for your replies, Gordon and LynEyre. Really useful information and advice in there particularly re lymph nodes and the Spaceoar gel. We had also decided to ask about possible genetic component as we have two sons, and both your bios confirm this is a good idea. I have a feeling you are right Lyn that further treatment will be advised.

Trying to get used to the new 'normal'. Have found out more in the past week (due to our own research as well as this conversation) and some of it not easy, particularly around the Gleason score (at least it is 4+5 not the other way round), but felt it essential not to go into next appointment unprepared.

It's a sunny day, so off now to enjoy it ☀️

Less than 10% of prostate cancers are thought to be genetic and they tend to be where the man and other close family members were diagnosed young and also have direct female relatives with breast cancer. Research suggests that the familial link is more likely to be environmental ... boys grow up breathing the same air as their dad, drinking the same water (with whatever additives the government feels appropriate) and eating pretty much the same food cooked the same way. John was only 50 at diagnosis, his dad was 79 so we don't suspect genes to be the problem, more likely his mum's tendency to burn things and to not change the chip pan oil often enough along with years of me giving him pre-prepared meals reheated in a microwave :-(

The best thing you can perhaps do for your sons is to make them aware of a prostate healthy diet - our urologist says if we changed the diets of young boys now we could eradicate PCa within a generation. Our son now eats no red meat and very little dairy but lots of garlic and cooked tomatoes. I also managed to get him onto filtered water.

If you do decide to ask about genetic testing get proper counselling first - a positive result could lead to your sons not being able to get insurance or mortgages in the future :-(

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

User
Posted 26 Mar 2017 at 20:37

Good news on results - fingers crossed it stays that way for many years. A holiday sounds like a marvellous idea.

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

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User
Posted 10 Mar 2017 at 20:05

Bumping your post for you Anne. Sorry don't have the necessary experience

Best Wishes

Sandra

***

We can't control the winds - but we can adjust our sails
User
Posted 10 Mar 2017 at 23:47

Hello Anne,

Welcome to the forum, though sorry for the reason that brings you here.

Although we could provide some general advice on what for example to expect and how to prepare for say RT or Chemo, it is not really possible for us to say and speculate on what plan the oncologist will propose. Not only do oncologists sometimes favour different approaches, some being more proactive than others but this may be necessary where the patient has other problems or is dictated by other factors in an individual case.

Hopefully, there is no further spread other than was found when your husband's Prostate was removed and presumably perceived in scans. The fall in PSA is welcome but you should be aware that not all types of Prostate Cancer, of which there are many, demonstrate high PSA in affected areas or indeed cancer cells are so concentrated as to necessarily show up on scans. Often it is a matter of just waiting to check on an individual's response to a recommended treatment and if this is not working in the short or long term try something else.

Barry
User
Posted 11 Mar 2017 at 09:36

Thank you Barry. I did not intend my post to imply we are asking for treatment advice as we realise this will be tailored to my husband, but we are hoping to learn from the experience of others who have similar levels of cancer. You raise an important issue that an oncologist may favour a particular approach, so have others on this forum sought second opinions, did it help or was it confusing? How soon does treatment usually start, what questions did people wish they had asked etc.

Any advice, reassurance, warnings gratefully received.

Anne

User
Posted 11 Mar 2017 at 12:09

Hi Anne

So sorry that you are in this situation. Do hope that the consultation at least makes your options clearer and gives you a good dollop of hope.

I asked a similar question on the forum some while back andwas given a very useful list of questions to ask (and told to write down the answers):

1. What are the treatment options? 

2. In each case, what will be the potential benefits and how rapidly will it be effective?

3. How long is it likely to be effective? (best-case scenario so that we stayed positive!)

4. When will it start? How, where and how frequently is it administered?

5. What are the likely side effects and what could be done to lessen them?

This was a good starting point although the conversation wandered off point several times of course. I then came back on to the forum and asked people for their specific experiences of the options we'd been recommended. That was really helpful, particularly for cheering us up since there are so many determined battlers on this site who are giving the disease a real run for its money.

Plus, if you haven't already downloaded the Toolkit I do recommend it - very clear and thorough.

Good luck. Do let us know how you get on.

Hugs

Eleanor

 

User
Posted 11 Mar 2017 at 17:46
Thanks Eleanor

Really helpful to know that we may be given options and therefore, presumably, time to think about them. We have a further appointment with the team 3 weeks after the oncologist and there will be another PSA test result then too. We will also be moving into temporary accommodation about then as we are refurbishing our house, so fingers crossed any treatment side effects are not too bad.

Anne

User
Posted 13 Mar 2017 at 00:45

Hi Anne

Welcome and all the best in the coming weeks. I can't add much more than Eleanor. You seem to have in all in hand, do keep diary / notes.   See my profile for more background about me.

As you no doubt realise the next PSA result is key, up until them no one knows what has been accomplished.  There's no reason this won't be <0.01 undetectable, everything removed.    You are then into another decision making process and take further advice.   However cross each bridge , as it arrives.    

There is a product see http://www.spaceoar.com/what-is-spaceoar/    I know little about it and don't know if available on NHS. (or maybe not relevant).      

  You could ask in more detail about that product (or similar) ,  tumour(s) position, size and which lymph nodes, to get a better understanding of the 'overall' picture. Hopefully husband continues to recover well and temporary move goes to plan.     

Gordon

 

 

 

User
Posted 13 Mar 2017 at 08:50

With an upgrade to T3b and N1 I think the doctors will say it is likely he would need further treatment at some point. If RT is off the table then the question will be how long do you wait before starting HT - at the appointment I would want to know how far from the prostate the affected nodes were and whether the RT shielding gel is available in your area yet

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

User
Posted 13 Mar 2017 at 09:29
Thanks for your replies, Gordon and LynEyre. Really useful information and advice in there particularly re lymph nodes and the Spaceoar gel. We had also decided to ask about possible genetic component as we have two sons, and both your bios confirm this is a good idea. I have a feeling you are right Lyn that further treatment will be advised.

Trying to get used to the new 'normal'. Have found out more in the past week (due to our own research as well as this conversation) and some of it not easy, particularly around the Gleason score (at least it is 4+5 not the other way round), but felt it essential not to go into next appointment unprepared.

It's a sunny day, so off now to enjoy it ☀️

User
Posted 13 Mar 2017 at 12:23

Hi Anne

I have 2 sons (26 / 30), 1 daughter all are PSA test aware.  Both my brother (he is 70 lives in Australia. PCa dx this year) and myself have taken part in :

http://www.icr.ac.uk/our-research/research-divisions/division-of-genetics-and-epidemiology/oncogenetics/research-projects/prostate-cancer-research/ukgpcs

  My saliva sample was taken my hosp. Paradoxically without my dad dying so quick back in 1976 PCa  I wouldn't have been aware about prostate at all. Lucky really that a friend spoke about PSA in the 1990's to me.  Like many I was asymptomatic.  Gives me a far better chance than dad had.    You may have been given info sheets via GP/Hosp ? ..  assuming they are still looking . Their target is to recruit 26,000 gentlemen into the UKGPCS by 2017. There's a simple family tree to complete and an optional life history 'tome' ! I sent info via email. 

On a positive things have been caught in time for your husband.   I did find quite a difference re. Australia and NHS, ie my brother is being given loads of info, online access to scans if he requires (so easy should he want 2nd opinions etc).  He is using 'std' Medicare. Me and wife (UK)  had to ask a lot more, rather than info ventured  and had 10 to 15 minutes 'slots'.  NHS have been excellent may I say. 

You could explore specifically if any RT possible at all (obviously there's no prostate for any gel to push bowel away) and would they target 'just' the prostate bed or build a specific profile program for your husband ?.          

 

Gordon

 

 

 

User
Posted 13 Mar 2017 at 13:03

Thanks Gordon. That's a point re. gel! M is being well looked after at Guys as we were still living in their catchment area on diagnosis. Although now a bit of a journey, have decided to stick with them for now.

User
Posted 13 Mar 2017 at 13:18
Originally Posted by: Online Community Member
Thanks for your replies, Gordon and LynEyre. Really useful information and advice in there particularly re lymph nodes and the Spaceoar gel. We had also decided to ask about possible genetic component as we have two sons, and both your bios confirm this is a good idea. I have a feeling you are right Lyn that further treatment will be advised.

Trying to get used to the new 'normal'. Have found out more in the past week (due to our own research as well as this conversation) and some of it not easy, particularly around the Gleason score (at least it is 4+5 not the other way round), but felt it essential not to go into next appointment unprepared.

It's a sunny day, so off now to enjoy it ☀️

Less than 10% of prostate cancers are thought to be genetic and they tend to be where the man and other close family members were diagnosed young and also have direct female relatives with breast cancer. Research suggests that the familial link is more likely to be environmental ... boys grow up breathing the same air as their dad, drinking the same water (with whatever additives the government feels appropriate) and eating pretty much the same food cooked the same way. John was only 50 at diagnosis, his dad was 79 so we don't suspect genes to be the problem, more likely his mum's tendency to burn things and to not change the chip pan oil often enough along with years of me giving him pre-prepared meals reheated in a microwave :-(

The best thing you can perhaps do for your sons is to make them aware of a prostate healthy diet - our urologist says if we changed the diets of young boys now we could eradicate PCa within a generation. Our son now eats no red meat and very little dairy but lots of garlic and cooked tomatoes. I also managed to get him onto filtered water.

If you do decide to ask about genetic testing get proper counselling first - a positive result could lead to your sons not being able to get insurance or mortgages in the future :-(

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

User
Posted 14 Mar 2017 at 09:05

Thanks LynEyre. Will pass on tips to sons. Hadn't thought about genetic testing as such, but should it be suggested will bear warning in mind.

User
Posted 26 Mar 2017 at 16:17

Just to let you know that the outcome of the meeting with the oncologist was good as there is currently 'no cancer to treat' (despite spread to lymph nodes), as PSA is undetectable.  We are now into the watchful waiting and hoping that the PSA stays that way, but know the odds.

So all good at the moment.  Some frustrations with the way the hospital run things generally, but that's the current state of the NHS.  We are just lucky that M had such a good surgeon so he has no incontinence and his margins were clear.  M is therefore overdoing it as usual, digging up trees today for example. We could do with a holiday and will need advice on the logistics of that too, but perhaps in another conversation! 

Thanks for all your advice.

User
Posted 26 Mar 2017 at 20:37

Good news on results - fingers crossed it stays that way for many years. A holiday sounds like a marvellous idea.

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

 
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