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Decision time!

User
Posted 07 Aug 2018 at 12:29

Thought I'd start a separate thread for this, because I'd welcome advice.


Final results of template biopsy: 32 cores taken, 18 show Gleason 3+3, one shows Gleason 3+4. The rest are clear. (Ie 56% show cancer, 44% clear.) Various scans (mpMRI and CT) show no lymph node involvement and a skeletal scan MRI for bone mets was negative, so I've been graded as T2C N0 M0. The slight cause for concern is my PSA of 32.


The urologist this morning said that RARP was on offer if I wanted it, but with a PSA as high as mine he has a suspicion that I may perhaps have microscopic traces of cancer in the lymph nodes, so he said that if it were him personally, he'd go down the other road, which is HT+RT, because RT can irradiate a wider area.


I'm seeing the oncologist next Monday to discuss the RT route, which is very much what I'm leaning towards. The urologist suggested that I ask the onco about having a PSMA PET scan, which might give more information about whether or not there is any lymph node involvement.


He said he thought that, although I've very few signs of aggressive cancer, he didn't think AS was a sensible choice for me.


My slight concern about RT is that I'm 56, so long-term effects are a potential issue for me.


Any opinions?


Chris


 

User
Posted 07 Aug 2018 at 13:48
If your surgeon is correct, you could go for RP and still find you need RT with its attendant risk in future years. John bitterly regrets having the op - the original diagnosis letter stated that according to the nomogram he had a 55% chance of recurrence but with a PSA of 3.1 and clear scans J chose not to believe it.

I still struggle a bit with your surgeon’s belief that a PSA of 32 means there are micro mets and what this means for all those men with PSA higher than yours who are given the all clear. On the other hand, when we have had members in the past with PSA of 50, 70 or higher who were told they had no cancer I have often wondered whether they were subsequently diagnosed a year or two later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Aug 2018 at 14:12
Your urologist sounds confused! Does he want a PSMA scan or not?? If you can get the PSMA scan it would give you more knowledge of your baseline.

User
Posted 07 Aug 2018 at 18:58
Generally, when a surgeon advises to have RT instead you take it seriously.

ED is not a definite after RT and where it does happen, it tends to develop many years later. We are now 7 years post-RT and just starting to see some signs ... erections are still possible, frequent and of the same hardness as before but perhaps getting a bit more difficult to maintain for as long as before.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 07 Aug 2018 at 13:26
Hi. Chris , you know my full story. My psa had reached 43 pre-surgery. So we seem quite identical. It’s a fair shout that RT is sensible as you could be operated on and suffer all the rubbish , then find it had spread already. I’m not the best to give advice as my gut feeling was to leave it , and in fact I feel the same way now. I’m not in your shoes but with my experience 3+ yrs on I’d beg for a PSMA PET scan and if that came back clear I’d consider AS. There is no way this cancer can be tackled it seems without causing horrible life changing side-effects , so the longer you put that off at your age the better in my opinion. My psa has always been high and was 1.5 after surgery. It’s now approx 50. Still no signs of cancer anywhere in me. I’ve had 2 PET scans , 2 bone , 3CT ........
So I’ve got mets growing somewhere but I’m gonna live my life till something rears it’s head and tackle it then. Pain is a good persuader. Tough choice for you. Very tough and only you can make it I’m afraid. My heart is with you friend

If life gives you lemons , then make lemonade
User
Posted 07 Aug 2018 at 13:48
If your surgeon is correct, you could go for RP and still find you need RT with its attendant risk in future years. John bitterly regrets having the op - the original diagnosis letter stated that according to the nomogram he had a 55% chance of recurrence but with a PSA of 3.1 and clear scans J chose not to believe it.

I still struggle a bit with your surgeon’s belief that a PSA of 32 means there are micro mets and what this means for all those men with PSA higher than yours who are given the all clear. On the other hand, when we have had members in the past with PSA of 50, 70 or higher who were told they had no cancer I have often wondered whether they were subsequently diagnosed a year or two later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Aug 2018 at 13:49
Thanks, Chris.

I very much want to have treatment because every consultant I've seen has told me that, in their view, what I've got has a very good chance of being completely curable (although I know one has to use the word "cure" with caution when talking about cancer).

My urologist told me this morning that the PET scan would be irrelevant if the oncologist is considering wider-area treatment, because that will irradiate the lymph nodes, but it should be considered if he's thinking about more targeted treatment.

As I say, I'm very much leaning towards HT+RT rather than surgery.

Cheers,

Chris


User
Posted 07 Aug 2018 at 13:54
Thanks for your thoughts as always, Lynn. Just to clarify, my uro simply suggested that micro-mets were a possibility, certainly not a certainty, which is why he feels that a wider-coverage RT might be a sensible option for the onco to consider.

Cheers,

Chris
User
Posted 07 Aug 2018 at 14:12
Your urologist sounds confused! Does he want a PSMA scan or not?? If you can get the PSMA scan it would give you more knowledge of your baseline.

User
Posted 07 Aug 2018 at 14:49

franci, in many areas, only an oncologist can arrange a PET scan - and that would include PSMA or other tracers. Urology have to defer to oncology. When John had his recurrence, the surgeon suggested additional scans and the onco agreed / booked them.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Aug 2018 at 15:41

That's absolutely right in my case, Lyn. The urologist can suggest that a PET scan may be useful, but only my oncologist can say yes or no. The PET scanner is "owned" by the oncology centre at Clatterbridge, so it's an oncology decision.


Chris

Edited by member 07 Aug 2018 at 15:43  | Reason: Not specified

User
Posted 07 Aug 2018 at 16:46
I’ve been talking to the PCUK nurses this afternoon, and one side-effect of RT I hadn’t really considered was ED. I’ll ask the oncologist about it when I speak to him on Monday, but what are people’s practical experience with this? Not the loss of libido associated with HT, but permanent damage to erectile function due to radiation damage? I don’t really have much of a sex life, so this isn’t a key consideration for me, but I would like to know what I’m likely to experience if I go down the HT+RT road.

Thanks,

Chris
User
Posted 07 Aug 2018 at 17:59
RT continues to impact the body years after treatment hence the younger you are the more you should try and avoid it (If you have other equally effective options!).

Everthing I read about HT also puts it on the list to be avoided if possible.

If you had the scan and there was no evidence of spread to lymph (or any where else) you may be more inclined to go with surgery. Surgery would also give you a complete pathology that is very useful.

Of course if the PSMA scan showed mets then you get to avoid RT and RP and go straight to HT and Chemo.

I guess your real dilemma is not knowing the true extent of your disease a PSMA scan can only help with this.
User
Posted 07 Aug 2018 at 18:58
Generally, when a surgeon advises to have RT instead you take it seriously.

ED is not a definite after RT and where it does happen, it tends to develop many years later. We are now 7 years post-RT and just starting to see some signs ... erections are still possible, frequent and of the same hardness as before but perhaps getting a bit more difficult to maintain for as long as before.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Aug 2018 at 19:48
I think with more targeted RT then ED is less of a problem and as Lyn says occurs later. I heard 2 yrs on , although a friend has had RT for bowel cancer aged 38 and not had an erection since. I guess if your Onco was to go “wide” with the RT to involve lymph’s then you may be more at risk of ED along the line. Continence and bowel problems tend to be transient. As a younger man you will be slightly more at risk of developing bladder or bowel cancer due to the RT itself. My biggest fear of the RT they suggested for me was lymphodema which is not good.

If life gives you lemons , then make lemonade
User
Posted 07 Aug 2018 at 19:49
That’s exactly the reason I’m drawn towards the RT route, Lyn. When a consultant urological surgeon at one of the region’s leading urology and oncology centres tells me that he thinks surgery is not the best option, I’m inclined to listen to him. I’m not going to make any definite decision until I’ve heard the oncologist’s viewpoint next Monday, but that’s certainly the way I’m thinking would be best to go at the moment.

Thanks for the advice about ED. As I said, it’s not something that’s particularly important in my life, but it’s nice to hear it’s not inevitable.

Chris
User
Posted 07 Aug 2018 at 20:28

Originally Posted by: Online Community Member
I think with more targeted RT then ED is less of a problem and as Lyn says occurs later. I heard 2 yrs on , although a friend has had RT for bowel cancer aged 38 and not had an erection since.  


 


Of course, the trauma and fear associated with being diagnosed with any cancer could be enough to cause ED - it might not be related to the RT.  Based on what I have read, RT based ED tends to develop 5-10 years later if it develops at all. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Aug 2018 at 19:06

Hi Chris,


I am also in Cheshire (South area) and have just finished HT/RT for similar reasons that you are in. Whilst I had a PSA of only 12 in comparison to you they found one core close to the periphery of the capsule. Whilst the surgeons grinned in keen anticipation whilst sharpening their scalpels they did admit that I stood a chance of some spread having already occurred. That made me feel that HT/RT was the better option, and anyway most of what I'd researched about an RP put me off from the risk of complications. A risk funnily enough born out by a close friend who had a bad time post RP as I was doing my radio.


When I was deciding between the sword and the death ray I asked my GP for his advice. His reply was that in his experience most people on the HT/RT route come through saying that it hadn't been as bad as they expected. That's been my experience too. Admittedly it's not been a bundle of laughs but in comparison to some of the stories post RP on this forum it's been a doddle.


As for ED. Yes, you can expect to lose all activity below the belt once into HT but the nice part of that is that you also lose all interest in the subject anyway. I found myself more interested in what time the Formula One was on than women. Luckily I am only on Prostap for six months so will hopefully get my balls back for Christmas! Sadly though I think my wife wants me on it permanently! She say's I'm a much nicer person since I went on it.


My RT was done at Christies in Manchester and I would encourage you to request that any treatment is done there. To the best of my knowledge Clatterbridge do not have the same up to date technology but I stand to be corrected. Apart from turning me into the rectal version of Rudolph the Red Nosed Reindeer the side effects were minimal and I'm glad to say that Rudolph went back up north within a week to ten days. 

Good luck with your choice but above all do what your heart is telling you. It will be the correct choice for you.


 


 


 

User
Posted 08 Aug 2018 at 20:10
Mr Boeing, I had prostate surgery a few weeks ago and am as well as I was before my op. - apart from ED and ‘stock shrinkage’. I use a retail analogy as I feel something has been stolen.

However my post-op histology shows some sign of spread outside the prostate capsule, so I might end up on a HT/RT regimen in the end after all. Then again, I might not bother to do anything except keep breathing.

I can still orgasm without an erection....and Her Loveliness is quite happy to do without the bother of penetrative sex, since she lost her libido three years ago following a total hysterectomy. She still gets invitations for cervical cancer smear tests, although she doesn’t possess one any more!

Cheers, John
User
Posted 08 Aug 2018 at 21:11

Aged 58 at diagnosis. Now knocking on the door of 73. RT/HT came with long term ED and bladder frequency but to me a small price to pay to keep breathing. No bowel issues.


Good luck


Ray

Edited by member 08 Aug 2018 at 22:06  | Reason: Not specified

User
Posted 09 Aug 2018 at 06:53
Thanks, all. Good to hear about successful outcomes from both types of treatment!

Chris
User
Posted 16 Aug 2018 at 14:43

Interesting thread. I'm in similar decision making mode. PSA of 84 picked up on a general health check just 3 weeks ago. No real symptoms. Only up once a night usually etc.


Had MP MRI, Bone Scan, Biopsy, Ultrasound. Results showed no spread of cancer outside Prostate. Gleeson 7 (4+3).


A PET scan is pending.


Surgery or HT/RT? Urologist said it will be my choice.


 


Seems most suggest here with my PSA level that HT/RT is way to go? 


 


If the PET scan is reliable and confirms no spread what option do I go for? Should I have a second opinion?


Look forward to your views.


 


Glen Aged 66

Edited by member 16 Aug 2018 at 14:51  | Reason: Not specified

User
Posted 16 Aug 2018 at 15:11
Hi Glen,

You seem to have similar symptoms to me, stage T2a and Gleason 4+3=7.

I had an mp-MRI scan at what I thought was 3T resolution (Hi-Def, the best) but I wonder if I did because it showed prostate-contained carcinoma and yet my post-operative biopsy discovered spread to my lymph nodes which didn’t show up on the MRI.

You are doing the right thing with a PET scan before anything else, I hope it involves Gallium 88 not Choline, as that should show up any metastases outside of your prostate capsule. If your cancer is possibly completely contained, your best bet is a robotic laparoscopic prostatectomy undertaken by the most experienced surgeon you can find. (I know one).

If there is extra-prostatic extension (that just means it’s spread), discovered after prostatectomy, and if there is recurrence of cancer, you would end up on the HT/RT route you mentioned in the first place.

So get your PET scan done and come back with your results. Contact me any time with any queries.

Best of luck.

Cheers, John
User
Posted 16 Aug 2018 at 15:38
Thanks John. The surgeon does laparoscopic but for some reason thinks open surgery would be better. I need to check why.
Any surgeon recommendations welcome as I investigate further.
User
Posted 16 Aug 2018 at 15:49

Can’t recommend a surgeon on here (protocol) but if you send me a private message I will tell you who some of the most highly rated ones in Britain are.


Are you having the Gallium 88 pet scan? Look it up.


I presume you have private health insurance?


Cheers, John

Edited by member 16 Aug 2018 at 15:51  | Reason: Not specified

User
Posted 16 Aug 2018 at 16:02

Hi Glen,


Whilst I second the opinion that any risk of extra capsular spread should push you to consider mopping up any stragglers through HT/RT the bottom line is that you must choose with your heart. Do your research, watch the operation on You tube and get a feel for which of the two rather arduous journey's suits you best. Surgery is simply the short sharp shock solution. HT/RT is a gentle but long and at time arduous route. Both however will bring you to the same destination.


Although I was only T1C one core out of six came back positive near the periphery which was reason enough for me to lean towards HT/RT. It suited me anyway as I frankly didn't fancy surgery. The bottom line of an RP to me was akin to giving the surgeon a pound coin to life the teddy bear out of the lucky dip machine without leaving any fibres behind........(Didn't go down well when I told the Surgeon that, although the Oncologist thought it was pretty accurate and bloody funny)


You are only a year or so older than me and like others offering you personal advice regarding surgery please feel free to PM me if you wish to discuss the alternative.


Good Luck and Good Health.


David.


 

User
Posted 16 Aug 2018 at 16:08

Hi to all. I also have very recently been diagnosed, Gleason 8 but low PSA 5.5, 9 months ago it was 3.3, hence the full diagnostics, I've only been offered surgery or radiotherapy, I've decided on surgery because of the damage the RT can do so limiting the option of surgery if RT doesn't work, this was all explained by the wonderful Macmillan Nurse I saw to get my results of the biopsy, also by one of the two surgeons who will do the surgery, for me it was a simple choice! Maybe only having two choices made it easier? 

User
Posted 16 Aug 2018 at 16:28

Blighty,


I wish you well with your choice but it does annoy me to read that yet again surgery is being pushed by both nurses and Urologists without adequate time or effort being given to allow you a balanced choice. I am fully convinced that there is a heavy bias in the health profession pushing people into surgery before they've had a chance to speak to Oncologists at more length. Surgery is slightly more expensive than RT but it gets you out of the system quicker, leaves you and your family to pick up the mess left by complications and in general is less of a burden to the system. I have a friend who had an RP in March. He was back in intensive care in 48 hours, had horrendous complications that had to be dealt with at home without any other recall than a 999 call.

My own journey with Christies in Manchester could not have been more different. Great care, good team and a back up service that I feel able to use without having to worry about being carted off to A&E in the middle of the night.


RT does not wreck you any more than surgery. I have just completed a course of V-MAT IGIMRT and four weeks after finishing just got my Pilot's licence medical back. Yes, the first week was a little bit fraught with inflammation of the bowel lighting me up like a Rectal version of Rudolph the Red Nosed Reindeer but things have settled and apart from some insomnia caused by the HT I'm doing fine.


As I've said to Glen. Do you own research, look at all options then, and only then, go with your heart.


 


 


 

User
Posted 16 Aug 2018 at 16:36

Thanks for that, Although I agree that it is sometimes easier to just get people out of the system with the least amount of time on treatment, I would hate to think that Macmillan would not have the best interests of the person in mind with advice.


In my case, I have an aggressive PC, so hopefully I have made the right choice but could only really go on the advice I was given!


 

User
Posted 16 Aug 2018 at 17:52
Just as an update I saw the oncologist today and have started HT. I'm going to start a new thread for my long-term treatment now the decision's made!

Chris
User
Posted 16 Aug 2018 at 22:07

Originally Posted by: Online Community Member
Thanks John. The surgeon does laparoscopic but for some reason thinks open surgery would be better. I need to check why.
Any surgeon recommendations welcome as I investigate further.


 


there are a number of reasons that open might be better in some cases:-


- previous abdominal surgery sometimes leaves scar tissue right where they would have been putting the port holes


- heart problems can rule our laparoscopic RP because the patient is tipped head down during the op which puts too much pressure on the heart


- neck problems - as above


- there is a possibility that the cancer is close to the base of the gland - it is easier to ensure a good margin with open than with LRP 


- previous bad reactions to general anaesthetic - the open op is usually an hour or so quicker than LRP 


 


Aside of all that, open RP has slightly better outcomes in terms of continence, erectile function, margins and % chance of recurrence. The bind is having to stay in hospital a bit longer and it takes a fair few weeks to recover. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Aug 2018 at 22:25
There is no easy answer to this, There are pros and cons to both surgery and radiation, outcomes and the degree of side effects can vary for both and cannot be predetermined. Individuals may come to different conclusions for many reasons. Of course much depends on how good the surgeon is or those administering the RT and clearly if the RT is well delivered and can be so targeted as to minimize collateral damage. Better scans can sometimes help determine the extent of the cancer but are not always definitive.

I know I am not the only one who having agonized on what primary treatment to have, that having made a decision there can be a sense of relief and hope you now feel the same Chris.
Barry
User
Posted 17 Aug 2018 at 13:20

Thanks Lyn


None of the heart, previous op issues apply. 


Regards


Glen

User
Posted 17 Aug 2018 at 13:55
Hi Glen
I was very similar to you - my oncologist preferred HT/RT, rather than surgery, as she thought the surgery often missed stuff and people ended up having RT afterwards anyway. Her judgement was RT to the lymph nodes too (even though there was no sign of anything there) as a precautionary measure. It looks as if the overall outcomes from surgery and HT/RT are about the same.
User
Posted 17 Aug 2018 at 14:16

Thank RW


How have you coped with your treatment.


How active have you been?


Did you try any special diets?


Regards


 


Glen

Edited by member 17 Aug 2018 at 14:25  | Reason: Not specified

User
Posted 17 Aug 2018 at 14:42
Hi Glen

My experience is here
http://community.prostatecanceruk.org/posts/t15908-RT

I kept on being active right through the RT - cycling and hiking - and now, 8 weeks after the end of the RT, I'm back to running too. Had to do the low-fibre diet during the RT (extremely dull and bland food), but now back to my usual very high-fibre stuff.
My experience of sitting in the RT waiting room with other guys suggests that most coped fine with it: there were a few men who were obviously having some issues, but in general, people seemed to cope well.
As you can read, I had lots of misgivings about the RT before I started, but they've turned out to be baseless - it was a very tedious 8 weeks, but it looks as if it was worth it.

Peter
 
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