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User
Posted 07 Oct 2014 at 11:57
Hi just been told my scan result shows cancer contained in prostrate, I have 2 appointments one with a surgeon who told me he would offer removal if this was the case and one with radio therapist.advice on what to ask would be appreciated .thanks
User
Posted 26 Oct 2014 at 23:59

Frustrating, yes - but not as devastating as if you had gone through 2 years of hormone treatment and 37 sessions of RT only to find that it was already in the lymph nodes and all had been in vain! Much better to have a short delay now and then make decisions based on the full story, methinks.

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

User
Posted 29 Nov 2014 at 16:52
Andy,

Just wanted to wish you the best of luck for the op on Wednesday. I'm sure it will go fine.

I wish my cancer had been caught early enough so I could have had an op. Had HT and radiotherapy (my only option) but have to wait 2 years to find out if it's been successful because of continuing HT.

Will be thinking of you on Wednesday.

All the best,

Steve

User
Posted 08 Oct 2014 at 18:45

Hi Teddyedward,

In both cases I suggest you take along a set of written questions to ask, which can be drawn from the Prostate Cancer Tool kit, your and your partners concerns, any other reading you've done etc. Then, at the appointment, write down the answers there and then.

I had a general set of questions and then specifics for each type of treatment, surgery vs radiotherapy (incl. breachytherapy, which I too was offered). After each appointment I then transferred each answer to a spreadsheet so I could compare (sorry, working in IT, I'm a bit of a propeller head in this respect).

In terms of general (non-treatment) questions, these related to the diagnosis e.g. agressiveness, tumour size, likelihood of spread etc. By asking the same question to each consultant gave me a level of reassurance.

In terms of specifc questions these related to the procedure, potential side effects, the surgeon's track record and of course chance of success.

If you have a partner / friend you may want to ask them to accompany you to help fill in any blanks when you get home.

 

Good luck with the treatment you choose.

 

flexi

 

 

 

User
Posted 11 Oct 2014 at 21:54

Thanks for your replies,which I will take on board ,I find the situation very strange as I have no symptoms and feel really well it was my wife who booked the blood test I would never had and she was right all men should be tested ,I will be spreading the word for others to get tested. Thanks

User
Posted 27 Oct 2014 at 11:29

Radical treatment is given to at least some men with spread to adjacent lymph nodes. Not necessarily all in vain.

User
Posted 27 Oct 2014 at 12:41
Hi

I was told I had lymph node involvement on my initial diagnosis but I questioned this, as the size was in my opinion within limits, but my oncologist was insistent that there was spread in that area, and RT was the only treatment I could have, so when I took my own path and paid for RP 32 nodes were removed but none were found to be cancerous, so in my opinion your surgeon is being very efficient in their approach as you cannot rely on scans alone as I found out.

Roy

User
Posted 28 Oct 2014 at 14:21

Originally Posted by: Online Community Member

Radical treatment is given to at least some men with spread to adjacent lymph nodes. Not necessarily all in vain.

 

My point was that if it isn't known to be in the lymph nodes and RT is planned only for the immediate area then it would in the long term have been a treatment in vain. Once it is known or thought to be in the nodes, the RT can be planned accordingly to capture the wider area. 

Similarly, most men facing RT go to a lot of trouble to keep their bladder out of the way (drinking copious amounts of water etc) plus the onco plans the RT carefully to reduce collatoral damage. In John's case, the RT was planned to include the bottom of the bladder as that was where the rogue cells were most likely to be. The same works for lymph - if they don't know to include it, there is a risk it gets missed.

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

User
Posted 18 Nov 2014 at 19:19

Hi

I find it strange that the consultant is only giving a 50/50 chance of success with the RP when the prostate appears contained and staged as T1. Did he explain why? Have you asked about his experience and success rates?

Bri

User
Posted 19 Nov 2014 at 13:10

Andy

Similar stats to you 10 out of 12 samples positive, Gleeson 7 PSA 7.7. Had the Da Vinci op 28th April, six months later PSA 0.03. Margins were positive so was told 20 to 30 per cent chance of recurrence. I was almost dry within 4 days post catheter and even after two bladder neck stretches and ISC continence and flow are good for now. The "50/50" could just be his way of saying you "may or may not" require RT and not a percentage risk. Post op make sure the catheter comes out slow and easy, my surgeon is convinced the catheter removal caused the stricture.

Thanks Chris

User
Posted 19 Nov 2014 at 20:52

Andy

I was a great believer in pelvic floor exercises and did them for about four months pre op. Post op I did a lot less in part due to the stricture and slow flow. Trying to hold my urine in before getting to the loo is touch and go sometimes , when I have got to go I have got to go. Restarted the exercisers again and things are getting better. continence is still good just the frequency and urgency need to improve.

 

Thanks Chris

User
Posted 19 Nov 2014 at 22:51
Hi Andy

Now that you have made your decision to proceed with op to remove prostate I wish you well on 3 December.

It look like our situations are very similar. I was 60 when diagnosed and had my op in November 2012. My next PSA is early next month - so far results have been "virtually undetectable". As you can see I am still alive so I hope this gives you some hope!

It would be good advice to start the PFE now but it is advisable not to do them whilst you have the catheter in place. You can resume them of course after the catheter has been removed.

Kind regards

User
Posted 28 Nov 2014 at 15:41

You need to remove number 3 come what may. You have made your decision now based on the information you have. Focus on the number 4. Have a pampered Xmas with your feet up recuperating.

Good luck for next week

Bri

User
Posted 28 Nov 2014 at 17:36

Good luck with your op Teddyedward.
Hope it all goes well for you.

PS I've got a vinyl record of a kids story of Teddy Edward read by Richard Baker !!!!!! Shows how old I and the record are.

We can't control the winds - but we can adjust our sails
User
Posted 29 Nov 2014 at 17:34

Andy

Good luck for Wednesday, take it easy for the first few days at least.

 

Thanks Chris

User
Posted 29 Nov 2014 at 18:12
Wishing you all the best on Wednesday Andy.

I have travelled the road you are now travelling so I know exactly how you will be feeling.

Will be thinking of you.

User
Posted 29 Nov 2014 at 20:37
Good luck Andy been through it so know how you are feeling
User
Posted 02 Dec 2014 at 21:42

Andy,

Good Luck tomorrow.

I'm sure it will go well.  Let us know when you can.

Steve

 

User
Posted 03 Dec 2014 at 09:07

Good luck Andy for today - let us know how you got on when you feel up to it.

dl

User
Posted 05 Dec 2014 at 23:55

Hope you doing ok Andy .... speak soon mate.

dl

User
Posted 06 Dec 2014 at 15:33

Home from op all seems ok .spoke to surgeon who is hopeful for bladder control, said prostrate was small with lumps within he cut wide to try for best result, he has arranged for catheter out in a fortnight and appointment with him in 6 weeks . Feel a bit sore and bruised but to be expected. Going to take it easy for insides to heal. Will read posts while I've been in .hope things are improving for everyone. Andy

User
Posted 06 Dec 2014 at 17:08

Glad it's all over for you Andy.
Hope you continue to make a speedy recover. Take it easy and let your body heal. All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Dec 2014 at 22:05
Thanks for posting - sure lots of folk have been thinking about you. Take care, rest ..... And look after you.

dl

User
Posted 07 Dec 2014 at 10:13

Hi Andy,

Glad everything seems to have gone well.  I was wondering how things had gone.

Make sure you rest and give things chance to heal.  Can be frustrating (I know after my recent difficulties) but it's best in the long run to follow the advice giving to you by the medics.

Best Wishes,

Steve

 

User
Posted 07 Dec 2014 at 18:39
Hope all is well.

Kind regards.

Show Most Thanked Posts
User
Posted 07 Oct 2014 at 20:27

Hi
Great news it's contained as you are in the cure camp. Have they said these are your only two options. May be worth enquiring about other available treatments eg brachytherapy.

If you are considering surgery you need to think about and discuss which type of surgery is best for you ie open, laprosopic or robotic. You need to discuss the surgeons results re Side effects ie how sucessful is he re continence and EF. How experienced is he in his chosen method of surgery....experience is essential. Can nerve sparing be performed if not, why not.

Re RT you may want to ask how long you would be on HT prior to and following RT. What method of RT would it be.

If you haven't already download the toolkit from PCUK. This give loads of useful.info.

I'm sure others will offer other words of wisdom

Bri

User
Posted 08 Oct 2014 at 18:45

Hi Teddyedward,

In both cases I suggest you take along a set of written questions to ask, which can be drawn from the Prostate Cancer Tool kit, your and your partners concerns, any other reading you've done etc. Then, at the appointment, write down the answers there and then.

I had a general set of questions and then specifics for each type of treatment, surgery vs radiotherapy (incl. breachytherapy, which I too was offered). After each appointment I then transferred each answer to a spreadsheet so I could compare (sorry, working in IT, I'm a bit of a propeller head in this respect).

In terms of general (non-treatment) questions, these related to the diagnosis e.g. agressiveness, tumour size, likelihood of spread etc. By asking the same question to each consultant gave me a level of reassurance.

In terms of specifc questions these related to the procedure, potential side effects, the surgeon's track record and of course chance of success.

If you have a partner / friend you may want to ask them to accompany you to help fill in any blanks when you get home.

 

Good luck with the treatment you choose.

 

flexi

 

 

 

User
Posted 11 Oct 2014 at 21:54

Thanks for your replies,which I will take on board ,I find the situation very strange as I have no symptoms and feel really well it was my wife who booked the blood test I would never had and she was right all men should be tested ,I will be spreading the word for others to get tested. Thanks

User
Posted 26 Oct 2014 at 22:40

Saw surgeon and he confirmed that it's contained in the prostrate , but will do lymph node biopsy this Tuesday as they show slight enlargement on Mir scan , the RT consultant has canceled appointment until mid November , not to pleased with delay so told surgeon to arrange for op but got told I must see RT. Frustrating isn't the word

User
Posted 26 Oct 2014 at 23:59

Frustrating, yes - but not as devastating as if you had gone through 2 years of hormone treatment and 37 sessions of RT only to find that it was already in the lymph nodes and all had been in vain! Much better to have a short delay now and then make decisions based on the full story, methinks.

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

User
Posted 27 Oct 2014 at 11:29

Radical treatment is given to at least some men with spread to adjacent lymph nodes. Not necessarily all in vain.

User
Posted 27 Oct 2014 at 12:41
Hi

I was told I had lymph node involvement on my initial diagnosis but I questioned this, as the size was in my opinion within limits, but my oncologist was insistent that there was spread in that area, and RT was the only treatment I could have, so when I took my own path and paid for RP 32 nodes were removed but none were found to be cancerous, so in my opinion your surgeon is being very efficient in their approach as you cannot rely on scans alone as I found out.

Roy

User
Posted 27 Oct 2014 at 20:21

Thanks for your posts , didnt say that surgeon doesn't think lymph nodes and PCs are linked he wants biopsy to try find reason he has put me on his list for surgery in mid November the frustration is with the RT consultant that the appointment has been put back to 2 months after pc was confirmed. Teddy

User
Posted 28 Oct 2014 at 14:21

Originally Posted by: Online Community Member

Radical treatment is given to at least some men with spread to adjacent lymph nodes. Not necessarily all in vain.

 

My point was that if it isn't known to be in the lymph nodes and RT is planned only for the immediate area then it would in the long term have been a treatment in vain. Once it is known or thought to be in the nodes, the RT can be planned accordingly to capture the wider area. 

Similarly, most men facing RT go to a lot of trouble to keep their bladder out of the way (drinking copious amounts of water etc) plus the onco plans the RT carefully to reduce collatoral damage. In John's case, the RT was planned to include the bottom of the bladder as that was where the rogue cells were most likely to be. The same works for lymph - if they don't know to include it, there is a risk it gets missed.

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

User
Posted 28 Oct 2014 at 14:51

Thanks Lynn ,been for my lymph node biopsy today , went ok they took one away for testing so awaiting results

User
Posted 12 Nov 2014 at 13:16

Hi good news today lymph node biopsy came back clear. . Saw RT consultant who went through options told me my recent blood test psa was 5.2 lower than before bizarre as had no treatment. Also Gleason confirmed on retest as 7 and T1 and n0 ,decided to have prostatectomy Told may have RT after 50/50 chance just awaiting date .Andy

User
Posted 18 Nov 2014 at 18:21

Saw surgeon today ,given dec 3 for prostatectomy , feeling slightly apprehensive but think it's the right choice. Andy

User
Posted 18 Nov 2014 at 19:19

Hi

I find it strange that the consultant is only giving a 50/50 chance of success with the RP when the prostate appears contained and staged as T1. Did he explain why? Have you asked about his experience and success rates?

Bri

User
Posted 19 Nov 2014 at 09:09

Hi Bri it was the RT consultant who he thought there was a 50/50 chance RT would be needed after due to the prostrate biopsy showing cancer in 11 from 12 .the surgeon yesterday was more positive as the MRI shows it contained in the prostrate and lymph node biopsy clear. Anyway not long to find out who's right . I do have confidence in surgeon his success rate is good and he wants to do my operation before going away and has change his list to accomadate this thanks. Andy

User
Posted 19 Nov 2014 at 13:10

Andy

Similar stats to you 10 out of 12 samples positive, Gleeson 7 PSA 7.7. Had the Da Vinci op 28th April, six months later PSA 0.03. Margins were positive so was told 20 to 30 per cent chance of recurrence. I was almost dry within 4 days post catheter and even after two bladder neck stretches and ISC continence and flow are good for now. The "50/50" could just be his way of saying you "may or may not" require RT and not a percentage risk. Post op make sure the catheter comes out slow and easy, my surgeon is convinced the catheter removal caused the stricture.

Thanks Chris

User
Posted 19 Nov 2014 at 18:00

Chris Thanks for the advice post op with catheter ,did you do any exercises to prepare for op.Andy

User
Posted 19 Nov 2014 at 20:52

Andy

I was a great believer in pelvic floor exercises and did them for about four months pre op. Post op I did a lot less in part due to the stricture and slow flow. Trying to hold my urine in before getting to the loo is touch and go sometimes , when I have got to go I have got to go. Restarted the exercisers again and things are getting better. continence is still good just the frequency and urgency need to improve.

 

Thanks Chris

User
Posted 19 Nov 2014 at 22:51
Hi Andy

Now that you have made your decision to proceed with op to remove prostate I wish you well on 3 December.

It look like our situations are very similar. I was 60 when diagnosed and had my op in November 2012. My next PSA is early next month - so far results have been "virtually undetectable". As you can see I am still alive so I hope this gives you some hope!

It would be good advice to start the PFE now but it is advisable not to do them whilst you have the catheter in place. You can resume them of course after the catheter has been removed.

Kind regards

User
Posted 28 Nov 2014 at 13:24

Been for the preassement today , everything ok so onward to next wensday for op ,my mate said there are 4 outcomes 1 they cancel the op ,2 they screw up and where burning you ,3 your saying why did I choice this option ,4 everything went swimmingly What was I worrying for.
Will post which outcome obviously number 2 someone else would have to inform you. Staying positive Andy

User
Posted 28 Nov 2014 at 15:41

You need to remove number 3 come what may. You have made your decision now based on the information you have. Focus on the number 4. Have a pampered Xmas with your feet up recuperating.

Good luck for next week

Bri

User
Posted 28 Nov 2014 at 17:36

Good luck with your op Teddyedward.
Hope it all goes well for you.

PS I've got a vinyl record of a kids story of Teddy Edward read by Richard Baker !!!!!! Shows how old I and the record are.

We can't control the winds - but we can adjust our sails
User
Posted 28 Nov 2014 at 19:48

Bri I would love to put my feet up but her indoors says that I will need to be active after op and she is not going to pamper me.
Johsan will try to look up record thanks

User
Posted 29 Nov 2014 at 16:52
Andy,

Just wanted to wish you the best of luck for the op on Wednesday. I'm sure it will go fine.

I wish my cancer had been caught early enough so I could have had an op. Had HT and radiotherapy (my only option) but have to wait 2 years to find out if it's been successful because of continuing HT.

Will be thinking of you on Wednesday.

All the best,

Steve

User
Posted 29 Nov 2014 at 17:34

Andy

Good luck for Wednesday, take it easy for the first few days at least.

 

Thanks Chris

User
Posted 29 Nov 2014 at 18:12
Wishing you all the best on Wednesday Andy.

I have travelled the road you are now travelling so I know exactly how you will be feeling.

Will be thinking of you.

User
Posted 29 Nov 2014 at 20:37
Good luck Andy been through it so know how you are feeling
User
Posted 30 Nov 2014 at 07:35

Thanks for all your support. ,Steve I have been reading your posts and wish you all the best and hope things get better for you . Thanks Andy

User
Posted 02 Dec 2014 at 21:42

Andy,

Good Luck tomorrow.

I'm sure it will go well.  Let us know when you can.

Steve

 

User
Posted 03 Dec 2014 at 09:07

Good luck Andy for today - let us know how you got on when you feel up to it.

dl

User
Posted 05 Dec 2014 at 23:55

Hope you doing ok Andy .... speak soon mate.

dl

User
Posted 06 Dec 2014 at 15:33

Home from op all seems ok .spoke to surgeon who is hopeful for bladder control, said prostrate was small with lumps within he cut wide to try for best result, he has arranged for catheter out in a fortnight and appointment with him in 6 weeks . Feel a bit sore and bruised but to be expected. Going to take it easy for insides to heal. Will read posts while I've been in .hope things are improving for everyone. Andy

User
Posted 06 Dec 2014 at 17:08

Glad it's all over for you Andy.
Hope you continue to make a speedy recover. Take it easy and let your body heal. All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Dec 2014 at 22:05
Thanks for posting - sure lots of folk have been thinking about you. Take care, rest ..... And look after you.

dl

User
Posted 07 Dec 2014 at 10:13

Hi Andy,

Glad everything seems to have gone well.  I was wondering how things had gone.

Make sure you rest and give things chance to heal.  Can be frustrating (I know after my recent difficulties) but it's best in the long run to follow the advice giving to you by the medics.

Best Wishes,

Steve

 

User
Posted 07 Dec 2014 at 18:39
Hope all is well.

Kind regards.

 
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