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Questions to ask consultants

User
Posted 08 Oct 2020 at 08:11

Morning all,


Have a meeting with consultants next week, and would like some guidance on questions to ask. Have a few of my own, are there any specific ones? 
have GS of 7, don’t  know T etc yet, any help welcome


TIA


Kevin

User
Posted 08 Oct 2020 at 11:27

Hi Wooders,


There is a lot to take in but I think from your earlier post its down to what treatment path you decide is best and I know you said you are getting the tool kit. The basic choices ( there are others) are RT or surgery. So, understanding how far the PCa has progressed is really important. If the staging is T2 and if the PCa is not close to the edge of the prostate then there is a very good chance that the surgery can remove the prostate but leave the nerves intact. If the staging is T3 ( i.e locally advanced) then the chances are surgery on its own won't be enough and you will need some additional RT. This may significantly influence your choice of options. As Ido4 has said knowing the bone scan is clear is also very important. Good luck 

User
Posted 15 Oct 2020 at 08:14

So, confirmation of Gleeson 4+3, and T3a. Cancer has not spread outside Prostate. Opted for surgery and booked sometime in the next couple of weeks.


 

Edited by member 15 Oct 2020 at 22:31  | Reason: Not specified

User
Posted 15 Oct 2020 at 16:07

Two weeks is pretty fast going.   The next question is what do you need to take with you and need after the op.  There are plenty of long threads on here about that topic.


Take trust in your surgical team and optimism.


All the best, Peter   

User
Posted 29 Oct 2020 at 19:25

Kevin


They are a gels in a plastic syringe, they do the same, so use one or the other. It can be used with the Catheter in and after the Catheter is out if required.  What the nurses do is put the tip of the syringe down the eye of the penis at the side of the Catheter. Alternatively I would pull the penis back towards the body , squirt the gel on the Catheter and let the penis go back to its normal position. DO NOT try and pull the Catheter out and apply gel.


Apologies for the capitals.


Thanks Chris


 

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User
Posted 08 Oct 2020 at 10:19

Hi Wooders, I would need more information to answer your question.


Have you had an MRI, is it Gleason 3+4 or 4+7, is any of the cancer near the edge of the capsule, have you had a bone scan, which consultants are you seeing?


Perhaps there are a couple of questions I would ask from above.


Best wishes,

Ido4

User
Posted 08 Oct 2020 at 11:27

Hi Wooders,


There is a lot to take in but I think from your earlier post its down to what treatment path you decide is best and I know you said you are getting the tool kit. The basic choices ( there are others) are RT or surgery. So, understanding how far the PCa has progressed is really important. If the staging is T2 and if the PCa is not close to the edge of the prostate then there is a very good chance that the surgery can remove the prostate but leave the nerves intact. If the staging is T3 ( i.e locally advanced) then the chances are surgery on its own won't be enough and you will need some additional RT. This may significantly influence your choice of options. As Ido4 has said knowing the bone scan is clear is also very important. Good luck 

User
Posted 08 Oct 2020 at 12:12
And of course, it may be a T1 and the doctors advise that active surveillance is an option, in which case you might want to understand exactly what monitoring you will be offered. Done properly, AS will include regular PSA tests, annual DRE and regular mpMRI with a new biopsy if there are suspicions that the situation may have changed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Oct 2020 at 14:08

Hi Wooders,


Two questions I would ask.....


(1) What is the likelihood that the cancer is fully confined to being within the prostate? And what gives the consultant the confidence that it is or isn't e.g. the results of an MRI scan, your PSA, your Gleason Score, his/her view of your staging etc.


(2) How soon should any treatment begin? 


Given this, you can then go on to ask about potential treatment options, incl. active surveillance, treatment side-effects, any further tests, plus the possibility of speaking to an oncologist if need be for their opinion.


It's useful if you can take somebody with you as it's easy to forget what was said.


Good luck


Flexi


 

User
Posted 08 Oct 2020 at 14:38

Ido4, yes had the MRI, then onto the Biopsy.


Gleeson not sure yet only told a 7, will find out next week during the consultation.


Kevin

User
Posted 08 Oct 2020 at 14:41

Hi Flexi, 


Thanks for the reply, two very good points, which I’ll throw at the consultants next week.


Kevin

User
Posted 08 Oct 2020 at 14:45

Hi Mike thanks for the reply, and the info.


Feeling a little more at ease following the initial news, so much help on this site.


Kevin

User
Posted 08 Oct 2020 at 14:50

Hi Lyn, thanks for taking the time to reply.


Appreciate your input, gives my more confidence to quiz the consultants next week. 
Regards


Kevin

User
Posted 08 Oct 2020 at 14:58

Here are my round about thoughts Wooders. 


I have a little yellow notebook with details of my appointments.  You're right to ask on here as looking now my questions look so trivial, some were never asked and some have never been answered.


Your questions will likely be framed around what he says.  My consultant was very detailed and so it was my aim to emphasise I wanted surgery asap.


The comments below are some of the things you should end up knowing.


He should tell you where the lesion is located and how big it is.   Mine was in the Apex all on one side, near the edge, which is away from the bladder.  I had been concerned about spread to the bladder and got the impression being in the apex could give a clean extraction.


He didn't tell me it was 13mm diameter although the surgeon did at my pre-op interview.  It was useful information as it seemed big if you assume your prostate is walnut size but reading about it, it isn't so bad.


If you ensure he tells you about the treatment options and what it means for your case.   I was offered 3 treatments.  When I mentioned Brachytherapy and trials he sort of laughed and ignored it.


To be honest I wanted it removed pronto so made it very clear I wanted surgery and asked the consultant if he could ring the surgeon right away.  He said he would and actually he did, I think, as I got an appointment very quickly from the surgeon's secretary over the phone, at another hospital.


Some say it grows slowly so don't panic into a decision and hear both sides, surgery and onco.   I didn't want RT or hormones.  The op is in and out with a fast known outcome.  RT and Hormones are long term treatments with long term answers.


Your preferences may be driven by your own preferences,  what they offer and RT may be the best for you.


So all the best,
Peter


 

User
Posted 08 Oct 2020 at 16:37

Hi Peter, thanks for the post, and your input, very helpful.


I still have to have the Brakedown of my Gleeson 7 score. Good info on other pertinent questions to ask next week, thanks again 


regards 


kevin


 

User
Posted 15 Oct 2020 at 08:14

So, confirmation of Gleeson 4+3, and T3a. Cancer has not spread outside Prostate. Opted for surgery and booked sometime in the next couple of weeks.


 

Edited by member 15 Oct 2020 at 22:31  | Reason: Not specified

User
Posted 15 Oct 2020 at 09:57

Hi Wooders


Have they said whether it would be nerve sparing?


Is there any further treatment likely after the surgery?


if you have any questions/concerns I'm sure you will get some answers on here


 


Good luck

User
Posted 15 Oct 2020 at 10:05

Hi Mike, consultant will probably take the right nerves, and hopefully keep the left.


As a precaution he will also take some of the lymph nodes on the right, even though it has not progressed passed the prostate.


No mention as yet on any possible follow up surgery.


Thanks for the beat wishes


Kevin


 

User
Posted 15 Oct 2020 at 16:07

Two weeks is pretty fast going.   The next question is what do you need to take with you and need after the op.  There are plenty of long threads on here about that topic.


Take trust in your surgical team and optimism.


All the best, Peter   

User
Posted 15 Oct 2020 at 22:29

Hi Peter, probably going to loose the rhs, but he’ll try to keep the left.


Thanks for the luck


regards


Kevin

Edited by member 15 Oct 2020 at 22:32  | Reason: Not specified

User
Posted 29 Oct 2020 at 14:08

Hi all, so 3days post op, home on the day after laparoscopic surgery.


Consultant happy with the op, awaiting lab results. He did take some nodes from the rhs to hopefully get a clear margin. Just dealing with the catheter now.


Thanks for all the advice. Keep well

User
Posted 29 Oct 2020 at 14:32

Wonders


Take it easy but not too easy, it's not a race, so do it at your pace. Treat the Catheter as a friend , it will save you getting up in the night for a few days. If it gets sore around the end get some instilagel or hydrocaine, they contain anesthetic, antiseptic, lubricant and allegedly an ingredient that helps dilate the Urethra, it is available without prescription at smaller chemists. 


When you have the Catheter out make sure you are well hydrated before the trial with out Catheter. Take a pad in case of leakage. Take a towel and cover for the car seat in case of accidents. 


Hope all goes well.


Thanks Chris


 

User
Posted 29 Oct 2020 at 15:02

Glad it all went well. Just take it easy - a bit of walking each day can ease you back into things

User
Posted 29 Oct 2020 at 18:09

Hi Chris, thanks for the advice, do you use the medications mentioned whist the catheter is still in or afterwards?


Kevin

User
Posted 29 Oct 2020 at 19:25

Kevin


They are a gels in a plastic syringe, they do the same, so use one or the other. It can be used with the Catheter in and after the Catheter is out if required.  What the nurses do is put the tip of the syringe down the eye of the penis at the side of the Catheter. Alternatively I would pull the penis back towards the body , squirt the gel on the Catheter and let the penis go back to its normal position. DO NOT try and pull the Catheter out and apply gel.


Apologies for the capitals.


Thanks Chris


 

User
Posted 13 Dec 2020 at 11:24

Originally Posted by: Online Community Member


DO NOT try and pull the Catheter out and apply gel.


Apologies for the capitals.


Thanks Chris





I had gallbladder surgery a few years back, I got out of bed ( a simply thing to do); I put my hand on the catheter as I swung my legs around and then stood up quickly.... You have re-kindled an impending nightmare, thanks!😀


DON’T DO THAT!


David

 
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