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Decisions decisions! Tell me what to do!

User
Posted 19 Jan 2021 at 12:55

After being diagnosed T3 N0 M0 Gleason 4+5 with no metastatic spread, PSA 4.5 and only one core positive out of 13 I am now at the point where I have to decide between RP and RT. My urologist is pushing for RT with curative intent which sounds good to me! I now have two interviews with the surgeon and the oncologist.


Totally confused as to the right way to go. RP seems to be over and done with some post surgery issues and still have the possibility of RT when it’s done. RT seems a bit milder but longer drawn out and still with possible side effects. I’ve had some hard surgery for Bowel cancer so my first thought is to avoid another bout but........ What should I ask, what should I do????


HELP!


 

User
Posted 19 Jan 2021 at 20:01

No definitely 4+5 = 9 on my letter! Thanks Chris I’m definitely leaning towards RT. Need to ask if my diagnosis lends itself to a particular direction. Either way I’ve got to make a decision and go with it. I finish my 4 weeks of bicalutamide tomorrow and had a Prostap 3 injection last week with no great side effects so perhaps that’s the way to go!

Edited by member 19 Jan 2021 at 20:03  | Reason: Not specified

User
User
Posted 20 Jan 2021 at 03:15
I and two friends were diagnosed with PCa two and a half years ago. We all had surgery.

My two mates both had recurrence and had to have HT and or RT afterwards. Both are doing well, as am I.

Hardly a scientific study with such a small ‘cohort’ (I thought that was something to do with the Roman legions), but I wonder if they wished they had gone with non-surgical treatments in the first place!

Best of luck.

Cheers, John.
User
Posted 20 Jan 2021 at 15:50
Sounds as if you got some good information. Very best wishes for your treatment.

Chris
User
Posted 27 Jan 2021 at 21:12
Always good to have a definite plan of action! I was in a similar position to you, with the MDT strongly recommending RT. Hope all goes well for you.

Chris
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User
Posted 19 Jan 2021 at 19:47
Gleason 4+5? Are you sure you don't mean 4+3, or 3+4?
User
Posted 19 Jan 2021 at 19:52

With a T3 there's a significant possibility of requiring salvage RT after surgery, so you get two sets of side-effects rather than one. I'd go for RT myself, but at the end of the day it's your decision. The fact that your urologist is suggesting RT is significant, because urologists are surgeons. When a surgeon recommends against surgery it's as well to listen.


Chris

Edited by member 19 Jan 2021 at 19:53  | Reason: Not specified

User
Posted 19 Jan 2021 at 20:01

No definitely 4+5 = 9 on my letter! Thanks Chris I’m definitely leaning towards RT. Need to ask if my diagnosis lends itself to a particular direction. Either way I’ve got to make a decision and go with it. I finish my 4 weeks of bicalutamide tomorrow and had a Prostap 3 injection last week with no great side effects so perhaps that’s the way to go!

Edited by member 19 Jan 2021 at 20:03  | Reason: Not specified

User
Posted 19 Jan 2021 at 21:05

Gleason 4+5 is at the high end, whereas your PSA is pretty low. Others have been around much longer than me, so may have seen this combo before.


I agree with Chris, but did you ask the Urologist why they felt RT was the right path?

User
Posted 19 Jan 2021 at 21:10
I intend to ask the oncologist tomorrow. I think the urologist was a little concerned because I had a bowel resection and reversal last year so he wasn’t sure about the implications of the previous surgery. Strangely enough when I was getting the biopsy done initially the guy doing it told me that RT would always be his first option. I guess that’s stuck with me although I’ve heard differing opinions on this forum! As for the PSA yeah I thought it was low but that, coupled with only one positive core out of 13, gave me some hope!
User
Posted 19 Jan 2021 at 21:20
With only one positive core, I would be asking the oncologist about the possibility of brachy v external beam RT v a combo. I would also ask him what he believes the % likelihood is that RT will do the job
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Jan 2021 at 21:31
Thanks Lyneyre. Good stuff! I’m going to write my list of questions out tonight. I’ll be more settled when the decision has been made. After ringing the bell last year for Bowel cancer it’s been a hard few weeks but I’m in positive mode. I think the letter saying “His recent bone scan has shown no evidence of metastatic disease. He is therefore eligible for treatment with curative intent” cheered me up considerably after a few weeks of funeral planning!
User
User
Posted 20 Jan 2021 at 03:15
I and two friends were diagnosed with PCa two and a half years ago. We all had surgery.

My two mates both had recurrence and had to have HT and or RT afterwards. Both are doing well, as am I.

Hardly a scientific study with such a small ‘cohort’ (I thought that was something to do with the Roman legions), but I wonder if they wished they had gone with non-surgical treatments in the first place!

Best of luck.

Cheers, John.
User
Posted 20 Jan 2021 at 12:43
So I spoke to the oncologist this morning armed with a raft of questions you all helped me with!
Basically, because of my past history of surgery, it was felt that RT was the best option. To be honest after getting C diff last year I wasn’t looking forward to another hospital stay! He said that, because of the low PSA and the localised aspect, then a curative intent was definitely on the cards even though a Gleason score of 9 indicates aggressiveness. He did say that 20% of cases such as this were recurrent but that’s good odds in my book. I asked about brachytherapy but he said the Trust had discontinued doing it because it was felt that it offered no advantages over EBRT and was a surgical technique which was to be avoided in my case. I will be speaking to the surgeon next week but it may just be a formality to explain why it’s not an option for me.
So, having finished 28 days of bicalutamide this morning, the plan is that in 2 months time I will be zapped daily for 4 weeks followed by quarterly injections for 3 years. Plus ongoing monitoring.
I feel a lot more informed, relaxed and positive going forward. Thanks so much for all of your help. These forums are great. I’m a novice here but an expert on Bowel resection, stoma and reversals! Every day something new!
User
Posted 20 Jan 2021 at 15:50
Sounds as if you got some good information. Very best wishes for your treatment.

Chris
User
Posted 27 Jan 2021 at 17:38

So I spoke to the surgeon today and he basically reiterated what the oncologist said ie it’s curable but because of my previous bowel surgery it would have to be open surgery and that would include a raised chance of side effects. He told me that he had chaired the MDT meeting and that the radiotherapy route was the agreed option which is basically what I’d decided but it was good to hear it from both sides.
He confirmed that either route offered a similar positive outcome with similar chances of recurrence.
So hopefully in a couple of months I’ll get zapped once a day for a month then 30 months of Hormone.
On February 1st I have a follow up colorectal telephone appointment with a nurse and I think I’m due my routine colonoscopy which will be a tense time! Something different every day!
But it’s another step along the way! Thanks everyone for your help, it really is invaluable.
User
Posted 27 Jan 2021 at 21:12
Always good to have a definite plan of action! I was in a similar position to you, with the MDT strongly recommending RT. Hope all goes well for you.

Chris
User
Posted 29 Jan 2021 at 01:19

Stay away from the surgery mate!


Dont let them butcher you.


 


You will be suffer (hope not hope I'm wrong) rest of your life, 


I had never stepped into hospital for any kind of treatment before my RP surgery, since than I had to go to A&E sometimes at 2 am some times 4 


Last week same day in 24 hours I made 2 trips.


 


Do not go ahead with surgery 


That's my suggestion and dont let anyone trick you on here with blah blah blah as if they became superman after the surgery...but in facts many of their bedroom life was way over before the surgery but they dont admit that!

User
Posted 29 Jan 2021 at 08:01
Thanks Rikki. You certainly don’t beat about the bush mate! As it is I’m staying away from the surgery because that’s what I’ve been advised by the surgeon and oncologist.
Having had three surgical goes with Bowel cancer I know the pitfalls but it eventually came right. From using these forums a lot over the last two years I know that there will always be contrary views of which route is the best and sometimes it’s the luck of the draw unfortunately.
I’m now looking forward to the RT and getting started on that timetable. I do hope life gets better for you!
Thanks again.
 
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