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Chemotherapy for Locally advanced PC

User
Posted 16 Mar 2016 at 12:45

Hi, New to this site so please bear with me.


I was diagnosed with locally advanced PC beginning of March...I'm 54


PSA of 24  Gleason 8 in all 12 cores


Bone scan clear....MRI scan showed no mets and that the cancer appears to be contained


in the prostate...it is heading to the bladder neck but told that even that is in the capsule.


Not suitable for surgery but on Hormone therapy ( Zoladex ) and planned for radical


radiotherapy to the whole prostate plus an area just outside the prostate with " curative intent".


Saw the oncologist yesterday, she said that having reviewed my data, the MDT think there will probably


be microscopic spread so they have offered a 6 cycle of chemo before the radiotherapy.


as well as the Hormone therapy.......again I'm told With " curative intent " I am under no illusions that this is highly unlikely.


My question is..has anyone else been down this route?  If so how you / they doing?


 


Shaun

User
Posted 17 Mar 2016 at 21:08

Sorry Shaun, I perhaps didn't express myself very well.

The public perception is that chemo cures cancer - many of the members here will have been in situations where, when first diagnosed, they had visions of having chemo or have had well meaning friends / family asking why they aren't having it. In fact, there is only a small group of cancers that chemo can cure on its own .... lymphoma, leukemia, some brain tumours, etc. There are many more cancers where chemo is used alongside other treatments, either before radiation starts or before surgery (some breast or lung cancers, for example) to weaken the cells and help the other treatments to work. In the case of prostate cancer, for many years it has been known that chemo does not make surgery or RT more successful so there was no point giving it. Like quite a lot of other cancers, chemo was only used when other treatments had failed.

The world of PCa is changing rapidly - every bit of new research or trial changes the landscape a little. Plus of course they keep devising new chemo drugs. My guess is that you are not being offered chemo because the MDT is confident that your cancer is contained - it is being offered (boldly and radically) because they have a sneaking suspicion that the RT / HT cannot do the job on their own. If your MDT is correct, how exciting that you are being offered a combination of three treatments that together could be curative. Much better than a shrug of the shoulders, the offer of only RT/HT and then 'cross your fingers and hope' mentality that some men would have to bear.

When I think of all the men that have come through here, have had the RT and then never made it to full remission - instead faced with permanent HT to control the cancer - I could weep. If this possibility - RT/HT/chemo - had been available perhaps we would still have some very dear friends with us.

Grasp it with both hands Shaun and I don't think I will be the only one cheering you on from the sidelines

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Mar 2016 at 08:19
Lyn
beautifully written and very well said ....Shaun I hope you take up this offer from your medical team, they are giving you an option to try something that they think will work. None of these things are trials they have all been used for many years but not necessarily in this order or together.
I spend a lot less time on this forum than I used to but I will follow your thread with excitement. This is ground breaking stuff and will be of interest to so many.
I honestly believe this is the best possible chance of a cure in your circumstances, all very well and good for me a Woman to say as I would never have to face that choice but I wish like hell my Husband or some of my friends here could have had that choice.

I wish you all the very best and the wisdom to make a decision that you are comfortble with.

xxx
Mo
User
Posted 19 Mar 2016 at 12:05

Perhaps I can help based on my experience. Advanced PCa just depends upon high PSA and Gleason scores. With those comes the likelihood based on experience across the world, that spread will have occurred outside the capsule. Not certainty, just likelihood. That is why chemo is a good early option, now approved by NICE and surely now standard treatment in selected cases nationwide. It may well.pick up any micromets that don't show on scans. I was Gleason 9 and PSA 62.3 over eight years ago. No scan ever showed spread. The evidence is that there has been no spread, but who knows? I had RT (of the prostate and seminal vesicles) and ADT, still on ADT.

I had bladder cancer four years or so ago and after other treatments including chemo, opted for bladder removal and with it the prostate and several lymph nodes. In the bits that were removed there was no sign of bladder cancer, thankfully, but interestingly no sign of PCa either, save in the bladder neck (which would not have been irradiated). The urethra left behind showed clear at the time but unfortunately must have contained some cells because subsequently the PCa has shown up there (again, a site that was not irradiated) and I have crumbly bits in my pipe! Now that met or local spread, whichever you may prefer, never showed on scans.

The likely next stage in my treatment after abiraterone is docetaxel. I think anyone who has it offered at an early stage in treatment of local advanced PCa (which perhaps mine was) should take it. Would that it had been available to me years ago!

AC in Northants

User
Posted 16 Mar 2016 at 12:45

Hi, New to this site so please bear with me.


I was diagnosed with locally advanced PC beginning of March...I'm 54


PSA of 24  Gleason 8 in all 12 cores


Bone scan clear....MRI scan showed no mets and that the cancer appears to be contained


in the prostate...it is heading to the bladder neck but told that even that is in the capsule.


Not suitable for surgery but on Hormone therapy ( Zoladex ) and planned for radical


radiotherapy to the whole prostate plus an area just outside the prostate with " curative intent".


Saw the oncologist yesterday, she said that having reviewed my data, the MDT think there will probably


be microscopic spread so they have offered a 6 cycle of chemo before the radiotherapy.


as well as the Hormone therapy.......again I'm told With " curative intent " I am under no illusions that this is highly unlikely.


My question is..has anyone else been down this route?  If so how you / they doing?


 


Shaun

User
Posted 16 Mar 2016 at 21:43
I also have locally advanced cancer, psa 135, gleason score 9, 5+4, cancer in all 13 cores. Have been on hormone treatment since Christmas, starting chemotherapy next Wednesday. Then radiotherapy. So lucky to have this treatment, since the results of the stampede trail have been so encouraging, thank you to all the people who did the trial. This is my first post!
User
Posted 18 Mar 2016 at 13:01

Thanks Lyn
That's all starting to make sense now and info like that is very very valuable to the far less informed of us. It sounds a plan Shaun. An ordeal , but one that could save your life and lead the way for others.
Very best wishes
Chris

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User
Posted 16 Mar 2016 at 20:28

Hi Shaun,
this is very, very interesting. Exciting if rare that a hospital might try chemo as part of a curative package but if you are fit and well, then perhaps now is the moment! You might become part of the next breakthrough in treating this type of cancer.

Good luck!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Mar 2016 at 20:35
Wow, this is the first time I've heard of this and I'd take the chemo, anything that kills the little beggars off before they get going is fantastic. Very interested to see if this is a new tack by oncologists in some cases.

Good luck
Devonmaid
User
Posted 16 Mar 2016 at 20:47
Shaun
be ground breaking and if you think it is the right thing to do go for it.

I am very excited that your team are being this innovative.

All the very best
xx
Mo
User
Posted 16 Mar 2016 at 21:06

Shaun, welcome to the site from me as well.

Sounds too good to be true but great that you have a team with their finger on the pulse and prepared to go ahead with new treatment methods.

Go for it, hope all does go well for you

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 16 Mar 2016 at 21:43
I also have locally advanced cancer, psa 135, gleason score 9, 5+4, cancer in all 13 cores. Have been on hormone treatment since Christmas, starting chemotherapy next Wednesday. Then radiotherapy. So lucky to have this treatment, since the results of the stampede trail have been so encouraging, thank you to all the people who did the trial. This is my first post!
User
Posted 16 Mar 2016 at 22:06

Hi Shaun
It sounds great you are being offered some variance on the normal treatment. I didn't actually realise Chemo was only normally given when incurable. I'm not sure why !
I don't understand why you have been diagnosed as locally advanced ? No spread to bones , contained in the capsule , no lymph node involvement , and although heading for the bladder , not there yet. Also why would they say you are unsuitable for surgery if it is all contained ? Am I missing a trick here ? I'm sure the elders will correct me. Anyway best wishes for you
Chris

Edited by member 16 Mar 2016 at 22:10  | Reason: Not specified

User
Posted 16 Mar 2016 at 22:23
I don't understand it either really .... The McMillan nurse told me from the PSA the Gleason and the fact that all 12 cores were positive... The highest being 95%.....at the 1st time I saw her when she told me it was cancer...... That she doubted I'd be suitable for surgery...... That's was before the scans...... When they came back clear she said HT and radical radiotherapy....... I asked again about surgery but again got told no, apparently there were 6 surgeon at the MDT and all said no.....I went to see the oncologist think she would confirm the radiotherapy...... So I was shocked when chemo was mentioned on top of the radiotherapy.....to be fair to the oncologist, the friend that came with me asked if it would be a cure...... The oncologist replied we don't know..... I was pinning all my hopes on the radiotherapy trying for a cure with being told it was still contained in the prostate capsule....... So adding chemo in threw me a bit but I thought they must have good reason for offering it .
Shaun
User
Posted 16 Mar 2016 at 22:49

This might help ?

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/chemotherapy/about/when-chemotherapy-is-used

User
Posted 17 Mar 2016 at 01:12

Originally Posted by: Online Community Member


Hi Shaun
It sounds great you are being offered some variance on the normal treatment. I didn't actually realise Chemo was only normally given when incurable. I'm not sure why !
I don't understand why you have been diagnosed as locally advanced ? No spread to bones , contained in the capsule , no lymph node involvement , and although heading for the bladder , not there yet. Also why would they say you are unsuitable for surgery if it is all contained ? Am I missing a trick here ? I'm sure the elders will correct me. Anyway best wishes for you
Chris



 


It is very interesting Chris - I did say to Shaun that you would be one of the closest to him in terms of current situation and future risk. It seems that like your onco, his believes there are micromets even though there is no evidence. I guess sometimes they have just been doing their job for so long that they have a gut feel for the not-so-straightforward cases. Probably similar to John's onco thinking that we are heading the wrong way down the street :-( 


 


On your other point, until recently chemo was only given to men in the last stages of life, to reduce side effects and regain a bit of quality. This is because hormonal cancers (like PCa) cannot be cured with chemo. The recent research, however, has shown that chemo given early to men with mets can damage the cells enough for other treatments like enzo to work better or for longer. My assumption is that Shaun's hospital (even if not his onco) are keen to test whether chemo can do enough damage for the RT/HT to hit harder than usual. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Mar 2016 at 02:20
YI'm beginning to doubt what I heard..... I will ask my McMillan nurse again .... About a few points brought up in this thread.. Like how they can be so sure I have mets when non seen on any of the scans and only the week previous the McMillan nurse said I didn't need chemo as my cancer hadn't spread......after the 1st MDT as I have previously said, I was told it was still in the prostate.... A bit was heading to the bladder neck ... But that was still confined in the prostate capsule .....
Maybe I am mistaken and jheatd what I wanted to hear....... Possibly down to the HT .
But when I spoke to the McMillan nurse yesterday I did ask if it was being done with curative intent...... And she said yes , my reply was well that's all I can ask......
To be honest, if that's not the case I don't understand why deviate from the standard treatment.,,,, I feel like I have a foot in each camp.,,, locally advanced and advanced at the min.......
User
Posted 17 Mar 2016 at 07:11

Yes but Lyn I had 18 lymph nodes removed , 5 of which were bilaterally cancerous , and had a small bladder resection due to spread cancer , which positively puts me in the locally advanced group !!
Sorry Shaun but your thread is interesting. Put your trust in your team but if you are anything like us you will want to UNDERSTAND why and what you are having done. You must have someone with you to write everything down and go armed with a bullet pointed list of your own questions. Don't leave until you've asked them all. You're not there for tennis-elbow yeh.
Please keep in touch
Chris

User
Posted 17 Mar 2016 at 08:22

I am y own worst enemy....I tend to over think things after the event and then doubt what i heard.


We all know this is PC in an advanced state..locally or advanced.


Maybe my reading on the internet hasn't helped.....and trying to grasp at anything that mentions


Curative.....my understanding with radiotherapy...if it is still in the capsule and not spread outside


then a cure is still possible.....that's what i have read at least......


I seem to be getting mixed messages at one point the McMillan nurse said scans show no spread


but because of high gleason psa and 12 cores positive and that it was heading to the bladder neck


but contained in prostate and the treatment is radiotherapy and HT...


when told they thought it would be a good idea for me to have chemo now as well, even though it is not standard


treatment....As i previously stated my friend asked the Oncologist when she suggested it, "would it be a cure"....the


oncologist said " we don't know "   to me that ( in my head anyway ) means possibly....not sure how you would read it?


Then i read your post Lyn about chemo not being able to cure PCa....and that got me questioning why they are offering it.


I have left a message for the McMillan nurse to ring me so i can ask her about all the points raised...


I will update you when i speak to her.


I see cowman with gleason 9 psa 135 "locally advanced " is having this very same treatment...wonder how it was positioned to him.


My worry is that if it isn't with hope at  least of a possibility of being curative......it's a lot to go through along along with the radiotherapy for the next 8-9 months...


 


 


 

User
Posted 17 Mar 2016 at 09:01

Have you read the link I posted above ? Although unusual to most members on here , chemoradiation is used in other cancers. It works much the same as having HT before radiotherapy. It attacks and stuns and shrinks the tumour making the RT more effective.

User
Posted 17 Mar 2016 at 10:44
My cancer has crept to the seminal vessicles,T3b N0 M0 , the oncologist hopes for a cure, but can't tell at this stage, the chemotherapy helps shink the cancer, so the radiotherapy is more effective. I am 57years old.
User
Posted 17 Mar 2016 at 21:08

Sorry Shaun, I perhaps didn't express myself very well.

The public perception is that chemo cures cancer - many of the members here will have been in situations where, when first diagnosed, they had visions of having chemo or have had well meaning friends / family asking why they aren't having it. In fact, there is only a small group of cancers that chemo can cure on its own .... lymphoma, leukemia, some brain tumours, etc. There are many more cancers where chemo is used alongside other treatments, either before radiation starts or before surgery (some breast or lung cancers, for example) to weaken the cells and help the other treatments to work. In the case of prostate cancer, for many years it has been known that chemo does not make surgery or RT more successful so there was no point giving it. Like quite a lot of other cancers, chemo was only used when other treatments had failed.

The world of PCa is changing rapidly - every bit of new research or trial changes the landscape a little. Plus of course they keep devising new chemo drugs. My guess is that you are not being offered chemo because the MDT is confident that your cancer is contained - it is being offered (boldly and radically) because they have a sneaking suspicion that the RT / HT cannot do the job on their own. If your MDT is correct, how exciting that you are being offered a combination of three treatments that together could be curative. Much better than a shrug of the shoulders, the offer of only RT/HT and then 'cross your fingers and hope' mentality that some men would have to bear.

When I think of all the men that have come through here, have had the RT and then never made it to full remission - instead faced with permanent HT to control the cancer - I could weep. If this possibility - RT/HT/chemo - had been available perhaps we would still have some very dear friends with us.

Grasp it with both hands Shaun and I don't think I will be the only one cheering you on from the sidelines

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Mar 2016 at 08:19
Lyn
beautifully written and very well said ....Shaun I hope you take up this offer from your medical team, they are giving you an option to try something that they think will work. None of these things are trials they have all been used for many years but not necessarily in this order or together.
I spend a lot less time on this forum than I used to but I will follow your thread with excitement. This is ground breaking stuff and will be of interest to so many.
I honestly believe this is the best possible chance of a cure in your circumstances, all very well and good for me a Woman to say as I would never have to face that choice but I wish like hell my Husband or some of my friends here could have had that choice.

I wish you all the very best and the wisdom to make a decision that you are comfortble with.

xxx
Mo
User
Posted 18 Mar 2016 at 13:01

Thanks Lyn
That's all starting to make sense now and info like that is very very valuable to the far less informed of us. It sounds a plan Shaun. An ordeal , but one that could save your life and lead the way for others.
Very best wishes
Chris

User
Posted 18 Mar 2016 at 13:55

Thanks very much guys,I intend to grasp it with both hands....It's going to be a long hard 7-8 months and that's if things go smoothly.


Cowman that has also commented on this thread, also starts on the same treatment...also on Wednesday.


So It must be becoming nearer to being standard treatment for locally advanced PC with it being tried in another part of the country.


I will try and post regular updates.

User
Posted 19 Mar 2016 at 12:05

Perhaps I can help based on my experience. Advanced PCa just depends upon high PSA and Gleason scores. With those comes the likelihood based on experience across the world, that spread will have occurred outside the capsule. Not certainty, just likelihood. That is why chemo is a good early option, now approved by NICE and surely now standard treatment in selected cases nationwide. It may well.pick up any micromets that don't show on scans. I was Gleason 9 and PSA 62.3 over eight years ago. No scan ever showed spread. The evidence is that there has been no spread, but who knows? I had RT (of the prostate and seminal vesicles) and ADT, still on ADT.

I had bladder cancer four years or so ago and after other treatments including chemo, opted for bladder removal and with it the prostate and several lymph nodes. In the bits that were removed there was no sign of bladder cancer, thankfully, but interestingly no sign of PCa either, save in the bladder neck (which would not have been irradiated). The urethra left behind showed clear at the time but unfortunately must have contained some cells because subsequently the PCa has shown up there (again, a site that was not irradiated) and I have crumbly bits in my pipe! Now that met or local spread, whichever you may prefer, never showed on scans.

The likely next stage in my treatment after abiraterone is docetaxel. I think anyone who has it offered at an early stage in treatment of local advanced PCa (which perhaps mine was) should take it. Would that it had been available to me years ago!

AC in Northants

User
Posted 19 Mar 2016 at 12:22

Great post AC

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Apr 2016 at 17:02

Hi Guys,


          thought I would give a quick  update of how things are going.


Had my 1st chemo session with no problems.....so much so i felt invincible and stupidly was out and about the same night in asda and a again a couple of days later......the upshot of this is I picked up a chest infection that i thought was chemo side effects....very tight chested and out of breath.....so i didn't do anything about it...  6 nights later, realising that my temp was up, I rang the number the chemo nurse gave me....kind of played it down so the Dr agreed I should go and see my own GP in the morning......that night tight chest and terrible chest pains ...got up and they did ease, so i went GP in the morning...got some antibiotics and a telling off for not ringing 999 with the chest pains.


         Antibiotics worked well but still a bit chesty after a week so a 2nd course prescribed....The GP also gave me a course to keep as a standby should i think something is starting again, to start on till i get to see him.....that reassures me a bit as I won't make the same mistakes again.


        Anyway it's Sunday and I am due to have 2nd chemo on Wed.....if bloods are ok.....feeling great at the min so hopefully all should be ok for Wed....


         Well that's it for now...apart from the chest infection that I should of jumped on earlier....things went a lot easier than I thought......will update as i get to the end of the next cycle.


 


Shaun


 

 
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