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The b******s back

User
Posted 01 Nov 2014 at 05:46
We had an appointment with the urologist yesterday and he confirmed that my husband's cancer has returned. First time around he had radiotherapy and the options put forward yesterday were hormone therapy or a PET scan (in London) followed by prostatectomy, Richard is 56.

Feeling terribly scared and fearful for both of us and it seems so terribly unfair. The side-effects of the surgery will be awful for him but hopefully not all of them will be permanent.

Is there anyone there that has had this who could give me some information and advice please?

Thanks

Stand by your man.

Love is the greatest thing.

User
Posted 01 Nov 2014 at 05:46
We had an appointment with the urologist yesterday and he confirmed that my husband's cancer has returned. First time around he had radiotherapy and the options put forward yesterday were hormone therapy or a PET scan (in London) followed by prostatectomy, Richard is 56.

Feeling terribly scared and fearful for both of us and it seems so terribly unfair. The side-effects of the surgery will be awful for him but hopefully not all of them will be permanent.

Is there anyone there that has had this who could give me some information and advice please?

Thanks

Stand by your man.

Love is the greatest thing.

User
Posted 02 Nov 2014 at 22:03

Hi Maggie,

Very upsetting news. There are some surgeons who will do a prostatectomy after RT but many will not do so because what is an intricate and major operation anyway, is made even more difficult after RT has caused severe damage to the prostate. Nevertheless, if your surgeon considers this would be beneficial in your husband's case it should receive careful consideration as he is fairly young. HT can hold the cancer back for a matter of months or years; even some of the best oncologists can't be sure for how long. There are of course drugs and chemo to help provide further defence possibly helped by a strict diet. (I believe Rob's the best person to speak about this here as he has researched and adopted a strict diet and I think had surgery after RT).

Edited by member 02 Nov 2014 at 23:31  | Reason: Not specified

Barry
User
Posted 02 Nov 2014 at 23:27

Originally Posted by: Online Community Member

I have heard it said many times that you can't have the op after RT, even the lead guy in my support group said you can't have the op after RT. I told him I was sure I had read somewhere you can, but couldn't remember where, but this seems to prove my point.

Many people believe and base their treatment on the fact that if you have the op first you can have a second bite at the cherry with RT. This seems to be wrong, and if it is, people should be informed that you can indeed have the op after RT.

Has anyone else heard of someone getting the op after RT?

 

 

Gerry, I can think of only one member here who has had salvage RP - generally speaking the medical position is that it is not possible and this is stated in the NHS leaflets, most books and the PCUK toolkit. There are two reasons for avoiding this way round - a) RT makes the prostate sticky and ill-defined which makes a clean surgical margin and total removal unlikely and b) the risk of life-changing and permanent side effects is much greater than for surgery followed by RT. Having said that, it is highly likely that the reason most surgeons avoid RP after RT is the fact that they have to publish their success rates and salvage RP has poor outcomes. If a surgeon is willing to give it a go, the thinking from countries where it is more common is that sometimes, it works :-)

 

* Amended to say that the idea of salvage RT after RP as a "second bite of the cherry" is flawed - the fact is that if RP fails and a second bite is needed, the statistical likelihood is that the outcome for that man will not be very good i.e. he is unlikely to get to or maintain a remission 

Edited by member 02 Nov 2014 at 23:31  | Reason: Not specified

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

User
Posted 04 Nov 2014 at 20:20

Have made contact with MM Barry.

 

Just to add that salvage treatments include surgery; Cryotherapy, HIFU & HDR Brachytherapy as possibilities.

 

My surgery was no different to a standard robotic RP experience & I was home the next day. Rarely the prostate might be more difficult to remove & open surgery might ensue to help the surgeon. Newer scans give a better picture of the likelihood of problems prior to treatments.

The NHS is unlikely to offer salvage treatments unless  benefit is anticipated. This may only be extended survival but this can be important to some. For others the higher risks of side effects may put them off.  A personal decision.

 

In other cancers. it is common for one treatment to follow another immediately. e.g. surgery, then R/T , then chemo. Or,chemo, then surgery, then R/T.Or, surgery, chemo & then R/T . Recurrence is not waited for. Each treatment adds to survival chances/time.( See NHS Predict website for example for B.Ca. ). I doubt this is viewed as a second bite of the cherry by the medical world who follow such tried protocols. We are just way behind with P.Ca. on the best types & sequences of treatments for each case. We are often offered choices at diagnosis simply because the medics do not know which treatment will give the very best result .

R/T statistically still shows a higher recurrence percentage  than surgery cases  for P.Ca. Even if figures include less aggressive cases on the surgery side. So there is a place for salvage treatments post R/T and these are being evaluated for best results.

User
Posted 04 Nov 2014 at 21:27

I am also contemplating what (if any) salvage treatment I may be offered following a slowing rising PSA after RT back in 2008. I doubt surgery will be offered but I should know more tomorrow evening after a telephone appointment with my consultant to discuss the recent Endorectal MRI scan I had. I will post about this in a separate thread eeer sorry, conversation. Meanwhile I have been doing a bit of research on Salvage treatment. There are some interesting parts in this link which the OP may find helpful. http://www.harvardprostateknowledge.org/how-to-handle-a-relapse-after-treatment-for-prostate-cancer

Barry
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User
Posted 02 Nov 2014 at 15:38

Sorry to hear your news , on the positive side they seem to be looking for cure which surgery may give, I am awaiting results with possible prostatectomy later this month .You are not alone Andy

User
Posted 02 Nov 2014 at 19:24

HI  I had OP 31/03/14 IM swimming, walking and doing more or less everything I was before OP. I had incontinence for around 2 weeks, I am totally dry now also able to get erections even though they took nerves from left side. Anything you want to know about OP just ask will give you any help I can. I know how worrying it can be waiting for OP.

Frank 

User
Posted 02 Nov 2014 at 21:29

Hi Maggie May sorry to hear your husbands cancer has returned, I know you will both be on a bit of a downer but please try and stay calm and just take each day as it comes. You will both get through it.

Very interesting to me that your husband had Radiotherapy first and is now being offered the Prostatectomy.

I have heard it said many times that you can't have the op after RT, even the lead guy in my support group said you can't have the op after RT. I told him I was sure I had read somewhere you can, but couldn't remember where, but this seems to prove my point.

Many people believe and base their treatment on the fact that if you have the op first you can have a second bite at the cherry with RT. This seems to be wrong, and if it is, people should be informed that you can indeed have the op after RT.

Has anyone else heard of someone getting the op after RT?

 

User
Posted 02 Nov 2014 at 22:03

Hi Maggie,

Very upsetting news. There are some surgeons who will do a prostatectomy after RT but many will not do so because what is an intricate and major operation anyway, is made even more difficult after RT has caused severe damage to the prostate. Nevertheless, if your surgeon considers this would be beneficial in your husband's case it should receive careful consideration as he is fairly young. HT can hold the cancer back for a matter of months or years; even some of the best oncologists can't be sure for how long. There are of course drugs and chemo to help provide further defence possibly helped by a strict diet. (I believe Rob's the best person to speak about this here as he has researched and adopted a strict diet and I think had surgery after RT).

Edited by member 02 Nov 2014 at 23:31  | Reason: Not specified

Barry
User
Posted 02 Nov 2014 at 23:19

Hi Linda,
at diagnosis the specialist thought that the cancer had already started to move and your OH's PSA has risen steadily since his RT so although I am sad to hear the news, I think you were prepared for this? What happened to the plan for salvage cryotherapy? I am assuming that the medical history that prevented him from having surgery when he was first diagnosed has now been resolved? The longevity of surgery side effects will depend partly on what his medical history includes and how much or how little his continence, bowel habits and sexual function have been affected by the RT / HT.

In your shoes I would snap their hands off at the offer of a PET scan - not always easy to get and would perhaps make it much easier to decide whether to risk surgery or whether hormone treatments are the most realistic option.

Stay strong

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

User
Posted 02 Nov 2014 at 23:27

Originally Posted by: Online Community Member

I have heard it said many times that you can't have the op after RT, even the lead guy in my support group said you can't have the op after RT. I told him I was sure I had read somewhere you can, but couldn't remember where, but this seems to prove my point.

Many people believe and base their treatment on the fact that if you have the op first you can have a second bite at the cherry with RT. This seems to be wrong, and if it is, people should be informed that you can indeed have the op after RT.

Has anyone else heard of someone getting the op after RT?

 

 

Gerry, I can think of only one member here who has had salvage RP - generally speaking the medical position is that it is not possible and this is stated in the NHS leaflets, most books and the PCUK toolkit. There are two reasons for avoiding this way round - a) RT makes the prostate sticky and ill-defined which makes a clean surgical margin and total removal unlikely and b) the risk of life-changing and permanent side effects is much greater than for surgery followed by RT. Having said that, it is highly likely that the reason most surgeons avoid RP after RT is the fact that they have to publish their success rates and salvage RP has poor outcomes. If a surgeon is willing to give it a go, the thinking from countries where it is more common is that sometimes, it works :-)

 

* Amended to say that the idea of salvage RT after RP as a "second bite of the cherry" is flawed - the fact is that if RP fails and a second bite is needed, the statistical likelihood is that the outcome for that man will not be very good i.e. he is unlikely to get to or maintain a remission 

Edited by member 02 Nov 2014 at 23:31  | Reason: Not specified

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

User
Posted 03 Nov 2014 at 14:52

Hi Lyn,

Thanks very much for the excellent explanation on salvage RP and why it is not common practice post RT.

This has made things a lot clearer for me as I wasn't sure why one surgeon might do it and not another. What you have said including the reasons makes good sense.

I was just a bit confused because I had definitely read that this had been done before, but everyone I spoke to said it couldn't as no surgeon would do it.

Gerry.

 

 

User
Posted 04 Nov 2014 at 20:20

Have made contact with MM Barry.

 

Just to add that salvage treatments include surgery; Cryotherapy, HIFU & HDR Brachytherapy as possibilities.

 

My surgery was no different to a standard robotic RP experience & I was home the next day. Rarely the prostate might be more difficult to remove & open surgery might ensue to help the surgeon. Newer scans give a better picture of the likelihood of problems prior to treatments.

The NHS is unlikely to offer salvage treatments unless  benefit is anticipated. This may only be extended survival but this can be important to some. For others the higher risks of side effects may put them off.  A personal decision.

 

In other cancers. it is common for one treatment to follow another immediately. e.g. surgery, then R/T , then chemo. Or,chemo, then surgery, then R/T.Or, surgery, chemo & then R/T . Recurrence is not waited for. Each treatment adds to survival chances/time.( See NHS Predict website for example for B.Ca. ). I doubt this is viewed as a second bite of the cherry by the medical world who follow such tried protocols. We are just way behind with P.Ca. on the best types & sequences of treatments for each case. We are often offered choices at diagnosis simply because the medics do not know which treatment will give the very best result .

R/T statistically still shows a higher recurrence percentage  than surgery cases  for P.Ca. Even if figures include less aggressive cases on the surgery side. So there is a place for salvage treatments post R/T and these are being evaluated for best results.

User
Posted 04 Nov 2014 at 21:27

I am also contemplating what (if any) salvage treatment I may be offered following a slowing rising PSA after RT back in 2008. I doubt surgery will be offered but I should know more tomorrow evening after a telephone appointment with my consultant to discuss the recent Endorectal MRI scan I had. I will post about this in a separate thread eeer sorry, conversation. Meanwhile I have been doing a bit of research on Salvage treatment. There are some interesting parts in this link which the OP may find helpful. http://www.harvardprostateknowledge.org/how-to-handle-a-relapse-after-treatment-for-prostate-cancer

Barry
User
Posted 05 Nov 2014 at 07:22
Thank you all for your replies. Whilst we knew Richard's PSA was rising a little it wasn't a continuous rise, but rise and fall and the oncologist didn't seem unduly concerned. It was only a few weeks ago when we noticed Richard had blood in his seminal fluid, saw the urologist and had yet another mri that we thought something else might be amiss, so no Lynne, we certainly weren't expecting it and it has come as something of a shock.

Brachytherapy as salvage is out as you can only have one lot of RT, we've bee told that HIFU is very experimental, as is cryotherapy, but obviously we'll check all the options out. We live near Bristol and whilst salvage RP isn't common, the surgeons have performed some procedures. We should hear in the next week or so if the PET MRI has been approved and we'll head off to London double quick and that should give the clearest picture possible of what we are dealing with.

There is one guy on this site who has had salvage RP and has contacted us privately and it is very comforting to have that support as well as the other messages on here.

Will keep you informed of our progress. 😃

Thanks

Linda

Stand by your man.

Love is the greatest thing.

User
Posted 05 Nov 2014 at 10:47

I am so sorry Linda. Because you had written in 2011 and 2012 about his PSA rising and the possibility of salvage cryotherapy, I assumed you had been expecting this latest news for a long time. If his medical problems made him unsuitable for surgery in 2009/10 have those problems now been resolved?

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

User
Posted 05 Nov 2014 at 18:12

" Brachytherapy as salvage is out as you can only have one lot of RT"

 

Actually no.

HDR Brachy is viable for some cases. More likely depends on area/hospital practice/ availability /funding etc.

 

 

User
Posted 05 Nov 2014 at 20:53

I have a post currently with Modulators, that covers my conversation with an assistant of my Consultant at the Marsden today regarding salvage treatment. One question I asked was "As i have had my full dose of RT, is it possible that I can be given further RT of any type, including Cyberknife as salvage treatment.' The answer was in the negative. So as Rob says, it must depend on the hospital because the Marsden have all types of RT (except Hadron) and as much experience as any cancer Hospital in the UK.

Barry
User
Posted 06 Nov 2014 at 20:50

I think Guys hospital & The Mount Vernon Centre would be a couple of places to ask about salvage Brachy post R/T. There may be others.

It's not a route I choose so further research would be needed.

 

 
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