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Decision time!

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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