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Hello from a slighty less confident patient

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User
Posted 01 Aug 2014 at 00:54

Hi, I'm Steve, a 59 year old Freelance Photographer, who's worked for newspapers and magazines (as staff but last 19 years as a freelance), PR, Weddings for 41 years.

 Visited the doctor will pee problems, blood test results showed a PSA of 48.8. Had an ultrasound & biopsy at the Royal Berkshire Hospital at the start of June, results (mid June) showed I had cancer in nine out of ten samples with a gleason score of 4+3. Saw consultant end of June, MRI confirmed I had locally advanced prostate cancer, stage T3. Bone scan was negative, nodes were clear. Started on Casodex tables for 4 weeks, Zoladex injections started a week later. Was told I would have radiotherapy after 3 months hormone treatment but would continue on the hormones for 2 years.

Trying to be positive but at times it can be very difficult.  Things seem to be going ok but then I keep finding out new information which shakes my confidence.  Had a meeting with my oncologist on July 22nd, thought it was going to be fairly routine, (recent blood test showed my PSA was down to 18 after three weeks hormone therapy) but she suddenly asked me if I'd ever had a rib injury because even though when my bone scan was reviewed by the team they decided it was negative, she thought there was a shadow on one of my ribs which she thought could be signs that the cancer may have spread there.  Also when we were discussing the radiotherapy treatment I'll be getting, my wife asked what were the chances that it would be successful and the oncologist replied she thought there was a 50/50 chance of success.  I thought the odds would have been better than that so I was pretty down in the dumps for a few days.

I've just had the date for my radiotherapy planning meeting, September 26th.  I just feel in limbo waiting for things to get started, but nervous that my life could depend on how well things go with those four weeks of radiotherapy.

Feel very vunerable at the moment.  Perhaps it's the hormones.

Edited by member 01 Aug 2014 at 22:41  | Reason: Not specified

User
Posted 01 Aug 2014 at 14:59

Hi Steve,

Can't see where you have said you were having RT for just 4 weeks as one forum member thought, though you did mention you were on Cassodex for 4 weeks prior to starting Zoladex. This HT regime is likely to considerably reduce you PSA and help shrink your tumour(s) prior to starting RT and work with the RT thereafter. Incidentally, it is becoming more common for men to have 6 months HT before RT these days but but in your case it seems your oncologist feels the 3 month lead in is more appropriate.

I would try to ignore the 50/50 chance. Men respond vary differently to treatment and new drugs if needed further down the line which are now available or will be so in due course mean that men with PCa should be able to survive longer.

Hope it goes well for you.

Whoops! must have missed the ref to 4 weeks RT - sorry!

Edited by member 02 Aug 2014 at 12:34  | Reason: Not specified

Barry
User
Posted 01 Aug 2014 at 20:08

Hi Steve,

 

I'm going to take a different tack. I'd suggest you don't want further investigation of the rib question at this time.

If it proved to be a bone met you might loose the chance of localised treatment i.e the R/T. Men with proven bone mets don't usually get R/T to the prostate. That R/T will increase your chances of success.

Should the rib question turn sour for you , it could be treated with R/T as an isolated area after your main treatment. You will get further scans post R/T and any doubts can be checked then.

One step at a time usually works best http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

User
Posted 01 Aug 2014 at 10:07
Hi Steve, yes it is probably the hormones but also you are having to take in and process a huge amount of info very quickly so it is no wonder if you go into overload occasionally. There are a number of things that occur to me:

- the radiologists are highly trained to read and interpret scans so I would be tempted to trust the results for now rather than the onco

- when your wife asked about success rates, did the onco just say 50:50 off the top of her head or did she put your stats into a nomogram and work it out? There is a big difference in how seriously you can take each of these

- you say 4 weeks of RT which is unusual for radical RT .... are you on a trial of some kind? Is it 4 weeks at a higher dose than usual (my husband was on that trial). Usually, radical RT is 37 days (7 1/2 weeks) at 2Gy each, a total of 74gy but some research is suggesting that fit blokes can handle 2.5 or even 3Gy over a shorter time.

- have you considered getting a second opinion? It might be worthwhile to have another onco look at your results so far

- try to get this idea of "I want to get things started" out of your head. You have already started, those hormones are blocking and starving the cancer cells, preventing them from developing and weakening the ones that are already in your body so that the RT is more devastating to them.

Try to enjoy the summer and get away if you can before the RT starts.

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

User
Posted 01 Aug 2014 at 10:25

Welcome Steve. What the others have said is very true. Hormones can have your emotions all over the place which in itself is frustrating and depressing.

For some peace of mind why not try and get the appointments brought forward.

Perhaps you could consider speaking to one of the specialist nurses on here.

Whatever you do - good luck.

Nobody wants to be a member of this site but we are and it's the best place to be for support and information and camaraderie.

Best Wishes to you and your wife.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Aug 2014 at 10:29
I have been thinking a bit more about this 50:50 comment. There are so many variables in the question your wife asked and the answer your onco gave.

'Success' in terms of PCa is considered by the medical profession to be 10 years of undetectable PSA following radical (aka 'curative') treatment. There are plenty of members on here that have made it to 10 years and are officially considered to be 'in remission'. There are many 000s more who had their treatment years ago, PCA is a distant memory for them and they don't need to belong to a forum like ours.

My guess is that when your wife asked about success she was thinking more short term, as in knowing at the end of the RT or in 2 years time whether or not the treatment eradicated the cancer. Unfortunately, they won't be able to tell you that with absolute certainty. That might be what the onco meant.

50:50 could be interpreted at its most basic ...either or. If the rib is affected, your current treatment plan will not be successful but if the rib is healthy, the RT/HT combo will probably work.

At a more complex level, when urologists or oncos are predicting outcomes using a nomogram, they input a whole range of data including your age, PSA, biopsy results, and local data such as outcomes in that particular hospital or region. The nomograms are based on research in New York. When my husband was diagnosed (age 50, PSA 3.1 T1 G3+4) he should on the face of it have had a great chance of being cured. However, he was given a 55% chance of recurrence based on his stats and the fact that men in Yorkshire tend to be diagnosed later and then don't do as well as men in New York. The nomogram was correct and his first treatment did fail but he had salvage treatment and hasn't looked back.

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

User
Posted 01 Aug 2014 at 12:55
Dear Steve

Your post suggests that your diagnosis is very similar to my OH's.

Have a look at our profile.

He was diagnosed in December 2011 with G3+4 but (unlike you) it had just start to spread to the nodes.

Therefore they said that RT would be better than RP so we went down this route.

We too were told that the chance of 'cure' was 50/50. I tried to focus on this as a positive in that - there is the chance of a cure, some others are not so lucky.

We decided to opt for the STAMPEDE trial and my OH also took Abiraterone for 2 years on top of the standard HT and RT.

That has finished now and he is just on the HT.

It is certainly a very difficult and sobering time and I must be honest and say that things will never be the same again. It has changed our lives completely in many different ways.

However - I asked the onco again about 'cure' and Lyn is correct, they will only say that you are cured after 10 years. So the worry does not go away. And who is to say what ailment you will get after that!! Could spend your whole life worrying about PCa then die of a heart attack.

I try to focus on the adage that 'any of us could be run over by a bus tomorrow' and that it is good that you CAUGHT this thing before it spread any further.

You are in a difficult place now but it will get easier. The RT will not be as bad as you think I promise.

Keep in touch.

Alison x

User
Posted 01 Aug 2014 at 18:23
Hi Steve

Sorry you find yourself here but you will find good advice and support.

I agree with Lyn about the 2nd opinion. The MDT have agreed on a clear bone scan but the oncol has shed some doubt on that. You need clarity.

I also thought the preferred option was 6 month HT before RT. Worth checking that out.

One thing I have learned since my dx is to be proactive and that you don't just have to sit back and accept what the 'experts' say.

Barry he did say four weeks of RT

All the best

Bri

Edited by member 01 Aug 2014 at 18:23  | Reason: Not specified

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User
Posted 01 Aug 2014 at 10:07
Hi Steve, yes it is probably the hormones but also you are having to take in and process a huge amount of info very quickly so it is no wonder if you go into overload occasionally. There are a number of things that occur to me:

- the radiologists are highly trained to read and interpret scans so I would be tempted to trust the results for now rather than the onco

- when your wife asked about success rates, did the onco just say 50:50 off the top of her head or did she put your stats into a nomogram and work it out? There is a big difference in how seriously you can take each of these

- you say 4 weeks of RT which is unusual for radical RT .... are you on a trial of some kind? Is it 4 weeks at a higher dose than usual (my husband was on that trial). Usually, radical RT is 37 days (7 1/2 weeks) at 2Gy each, a total of 74gy but some research is suggesting that fit blokes can handle 2.5 or even 3Gy over a shorter time.

- have you considered getting a second opinion? It might be worthwhile to have another onco look at your results so far

- try to get this idea of "I want to get things started" out of your head. You have already started, those hormones are blocking and starving the cancer cells, preventing them from developing and weakening the ones that are already in your body so that the RT is more devastating to them.

Try to enjoy the summer and get away if you can before the RT starts.

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

User
Posted 01 Aug 2014 at 10:25

Welcome Steve. What the others have said is very true. Hormones can have your emotions all over the place which in itself is frustrating and depressing.

For some peace of mind why not try and get the appointments brought forward.

Perhaps you could consider speaking to one of the specialist nurses on here.

Whatever you do - good luck.

Nobody wants to be a member of this site but we are and it's the best place to be for support and information and camaraderie.

Best Wishes to you and your wife.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Aug 2014 at 10:29
I have been thinking a bit more about this 50:50 comment. There are so many variables in the question your wife asked and the answer your onco gave.

'Success' in terms of PCa is considered by the medical profession to be 10 years of undetectable PSA following radical (aka 'curative') treatment. There are plenty of members on here that have made it to 10 years and are officially considered to be 'in remission'. There are many 000s more who had their treatment years ago, PCA is a distant memory for them and they don't need to belong to a forum like ours.

My guess is that when your wife asked about success she was thinking more short term, as in knowing at the end of the RT or in 2 years time whether or not the treatment eradicated the cancer. Unfortunately, they won't be able to tell you that with absolute certainty. That might be what the onco meant.

50:50 could be interpreted at its most basic ...either or. If the rib is affected, your current treatment plan will not be successful but if the rib is healthy, the RT/HT combo will probably work.

At a more complex level, when urologists or oncos are predicting outcomes using a nomogram, they input a whole range of data including your age, PSA, biopsy results, and local data such as outcomes in that particular hospital or region. The nomograms are based on research in New York. When my husband was diagnosed (age 50, PSA 3.1 T1 G3+4) he should on the face of it have had a great chance of being cured. However, he was given a 55% chance of recurrence based on his stats and the fact that men in Yorkshire tend to be diagnosed later and then don't do as well as men in New York. The nomogram was correct and his first treatment did fail but he had salvage treatment and hasn't looked back.

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

User
Posted 01 Aug 2014 at 12:55
Dear Steve

Your post suggests that your diagnosis is very similar to my OH's.

Have a look at our profile.

He was diagnosed in December 2011 with G3+4 but (unlike you) it had just start to spread to the nodes.

Therefore they said that RT would be better than RP so we went down this route.

We too were told that the chance of 'cure' was 50/50. I tried to focus on this as a positive in that - there is the chance of a cure, some others are not so lucky.

We decided to opt for the STAMPEDE trial and my OH also took Abiraterone for 2 years on top of the standard HT and RT.

That has finished now and he is just on the HT.

It is certainly a very difficult and sobering time and I must be honest and say that things will never be the same again. It has changed our lives completely in many different ways.

However - I asked the onco again about 'cure' and Lyn is correct, they will only say that you are cured after 10 years. So the worry does not go away. And who is to say what ailment you will get after that!! Could spend your whole life worrying about PCa then die of a heart attack.

I try to focus on the adage that 'any of us could be run over by a bus tomorrow' and that it is good that you CAUGHT this thing before it spread any further.

You are in a difficult place now but it will get easier. The RT will not be as bad as you think I promise.

Keep in touch.

Alison x

User
Posted 01 Aug 2014 at 14:59

Hi Steve,

Can't see where you have said you were having RT for just 4 weeks as one forum member thought, though you did mention you were on Cassodex for 4 weeks prior to starting Zoladex. This HT regime is likely to considerably reduce you PSA and help shrink your tumour(s) prior to starting RT and work with the RT thereafter. Incidentally, it is becoming more common for men to have 6 months HT before RT these days but but in your case it seems your oncologist feels the 3 month lead in is more appropriate.

I would try to ignore the 50/50 chance. Men respond vary differently to treatment and new drugs if needed further down the line which are now available or will be so in due course mean that men with PCa should be able to survive longer.

Hope it goes well for you.

Whoops! must have missed the ref to 4 weeks RT - sorry!

Edited by member 02 Aug 2014 at 12:34  | Reason: Not specified

Barry
User
Posted 01 Aug 2014 at 18:23
Hi Steve

Sorry you find yourself here but you will find good advice and support.

I agree with Lyn about the 2nd opinion. The MDT have agreed on a clear bone scan but the oncol has shed some doubt on that. You need clarity.

I also thought the preferred option was 6 month HT before RT. Worth checking that out.

One thing I have learned since my dx is to be proactive and that you don't just have to sit back and accept what the 'experts' say.

Barry he did say four weeks of RT

All the best

Bri

Edited by member 01 Aug 2014 at 18:23  | Reason: Not specified

User
Posted 01 Aug 2014 at 20:08

Hi Steve,

 

I'm going to take a different tack. I'd suggest you don't want further investigation of the rib question at this time.

If it proved to be a bone met you might loose the chance of localised treatment i.e the R/T. Men with proven bone mets don't usually get R/T to the prostate. That R/T will increase your chances of success.

Should the rib question turn sour for you , it could be treated with R/T as an isolated area after your main treatment. You will get further scans post R/T and any doubts can be checked then.

One step at a time usually works best http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

User
Posted 01 Aug 2014 at 23:38
Good point Rob
User
Posted 02 Aug 2014 at 08:13
Yes Rob - good idea to consider.

User
Posted 03 Aug 2014 at 00:26

Hi,

 

Just like to thank everyone for making me feel so welcome to your community and for your valuable support.  I was feeling quite isolated, not really knowing who I could talk to about my true feelings about my situation.  It's sometimes difficult to express your fears with those closest to you (ie wife and family) because they are worried enough already.  My son just got married in March and my eldest daughter is expecting our first grandchild in October (the month my radiotherapy is due to start!) and I think it's awful that they should be worried about me at what should be a really happy time of their lives. 

 

One real positive thing that has resulted from the cancer diagnosis is that my wife and I have become much closer again.  After 31 years of marriage you do tend to take each other for granted, something like this makes you face the reality that you may not always have each other.

 

It's going to be a difficult journey but with your support it will be much easier.

 

Thanks everyone.

 

Steve

Edited by member 03 Aug 2014 at 00:30  | Reason: Not specified

User
Posted 03 Aug 2014 at 17:08
Originally Posted by: Online Community Member
Hi Steve,

I'm going to take a different tack. I'd suggest you don't want further investigation of the rib question at this time.

If it proved to be a bone met you might loose the chance of localised treatment i.e the R/T. Men with proven bone mets don't usually get R/T to the prostate. That R/T will increase your chances of success.

Should the rib question turn sour for you , it could be treated with R/T as an isolated area after your main treatment. You will get further scans post R/T and any doubts can be checked then.

One step at a time usually works best [img=http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif]

Good point, Rob. I think I may have made the wrong move already because when I was asked about the rib during the meeting with the oncologist, I asked if I could have an x-ray to check it out. I just wanted to know what was happening if they could tell at this stage. I had the x-ray two days later and haven't heard from them since about the results but I have been booked in for an oncologist appointment on the 30th September, several days after my radiotherapy planning meeting. Hopefully this means my radiotherapy will go ahead as planned.

Steve

User
Posted 03 Aug 2014 at 17:10
Steve,

On the subject of isolation, being on here is an enormous help. However, once you start RT and really see and interact with fellow sufferers you will fell like you have just joined the local social club.

Sure, no one elects for RT for the social but it is a big secondary benefit.

I was sorry to leave!

Best wishes

Kevin

User
Posted 03 Aug 2014 at 17:59
Originally Posted by: Online Community Member
Hi Steve,

I'm going to take a different tack. I'd suggest you don't want further investigation of the rib question at this time.

If it proved to be a bone met you might loose the chance of localised treatment i.e the R/T. Men with proven bone mets don't usually get R/T to the prostate. That R/T will increase your chances of success.

Should the rib question turn sour for you , it could be treated with R/T as an isolated area after your main treatment. You will get further scans post R/T and any doubts can be checked then.

One step at a time usually works best [img=http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif]

Actually, it wasn't in my mind to have further exploration of the rib question; I was thinking that options such as RP might also be available and/or that a second opinion which agrees with the current treatment plan would provide reassurance.

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

User
Posted 03 Aug 2014 at 20:39
Steve

I was also curious why there was no mention of RP, I was Gleeson 4+3 PSA 7.7 age 62 10 of 12 cores positive. I had non nerve sparring Da Vinci RP April 28th 2014 and PSA was undetectable in June 2014. PSA confirmed undetectable last week.

Thanks Chris

User
Posted 03 Aug 2014 at 21:48

Originally Posted by: Online Community Member
Steve I was also curious why there was no mention of RP, I was Gleeson 4+3 PSA 7.7 age 62 10 of 12 cores positive. I had non nerve sparring Da Vinci RP April 28th 2014 and PSA was undetectable in June 2014. PSA confirmed undetectable last week. Thanks Chris

 

Hi Chris,

Thanks for your message.

RP was mentioned to me during the meeting with my consultant following the bone scan and MRI but I was told that it had been decided that due to the fact that the cancer had broken through the side of the prostate that it would be too risky to perform a RP and RT would be a safer option and probably more successful.  Also in my case my PSA was 48.8 at diagnosis. 

I hope that your recovery continues to go well.  Best of Luck now and in the future.

Steve

 

User
Posted 03 Aug 2014 at 22:02

Originally Posted by: Online Community Member
Steve, On the subject of isolation, being on here is an enormous help. However, once you start RT and really see and interact with fellow sufferers you will fell like you have just joined the local social club. Sure, no one elects for RT for the social but it is a big secondary benefit. I was sorry to leave! Best wishes Kevin

 

Thanks Kevin,

 

In some ways I'm looking forward to the RT getting underway, at least it would seem that an attempt is underway to try and "cure" the cancer.  I was a little surprized when I was told it would only be 4 weeks RT rather than the usual 7 weeks.  I know it's going to be a higher daily dose but I'm scared of the idea that if this doesn't get rid of the cancer cells, I can't have it again at a later date.  This is my only chance of a possible cure.  Otherwise future treatment offered will only slow down growth of the cells to try and give me a longer life.

 

Hope everything is going well with your treatment and those PSA figures are staying down.

 

Keep in touch.

 

Steve

 

User
Posted 03 Aug 2014 at 22:33




Hi Lyn,



Thanks for your message and the previous messages.



I haven't had chance to consider getting a second opinion yet. I'm going to try and speak to one of the specialist nurses on this site and see what their thoughts are on what's happened so far. I'm reluctant to consider causing any delay to my treatment especially if there's a chance that the RT option could be withdrawn if the situation with my rib does turn out to be bad (as has been suggested in one of the posts).



I've always been healthy throughout my life, the last major thing I had done was having my tonsils out when I was 5 years old so this diagnosis has come as a real shock. I'm not certain of anything anymore. It's amazing how lonely you can feel even when you're surrounded by a loving family and friends. Thankfully, I feel being in this community helps because people here know exactly what I'm going through.



I do appreciate your kindness in contacting me. Stay in touch.



Steve



Edited by member 03 Aug 2014 at 22:34  | Reason: Not specified

User
Posted 04 Aug 2014 at 19:36

" This is my only chance of a possible cure."

 

Well no it isn't actually.

Post R/T salvage treatments are happening. Admittedly early days but  certainly on the books. The newer HT treatments + possibly other additions with those look useful in some cases. Chemo might improve once timing & combinations are sorted ( as they are more-so with B.Ca & other cancers ). Perhaps above all is the approaching knowledge of when to act and in what order. Up until now it has been just moving from one treatment to another with just traditional approaches. Individual treatment tailored to the case will come.

P.Ca research has moved in the last few years & benefits should follow.

User
Posted 05 Aug 2014 at 19:16
Thanks Rob, for the encouraging reply. You have had a real battle, looking at your profile, you are a hero. I am still a bit shell shocked at the moment, still finding it difficult to see the light at the end of the tunnel.

Keep on touch.

Steve

 
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