Which consultant first?

Colin,

Sorry you find yourself a member of this exclusive group.

It's useful to put your diagnosis in your profile so people can check it before answering and tailor answers more specifically to your condition. Gleason is part of it, but also important is your PSA history with dates, staging (e.g. T3aN0M0, or something like that), PIRADS score from MRI scan, and any more detailed information about location of the cancer in the prostate.

It sounds like your MDT (multi-disciplinary team) has decided you are broadly suitable for either a radical prostatectomy (RP) or radiotherapy (RT), and is sending you to consultants who deal with each so you can get detailed info from each, and use that to decide which way to go.

Hi Colin, I was operated on at Preston almost exactly 3 years ago.  Things have changed since I was there as they hadn't got a robot.  Also I chose surgery from the word go as I was told it was near the edge and wanted it cut out as soon as possible.

I saw the surgeon on the 6th Dec and he operated on the 16th which was pretty quick as he said it would be after Christmas at our meeting.  Although I did mention to him I was ready for the operation right away if he had a spare slot.

In theory I don't think it matters which way you see them as the oncologist could start you on hormones very quickly.  The only reservation I'd have is that if you favour surgery he might put off setting a date until you've seen the oncologist.  Whereas if you said right away you choose surgery he might give you an earlier date.

At the appointment you could ask the surgeon if it will make a difference to the date.  It depends how you feel about it.  Some people are willing to wait a bit longer without concern. 

When I mentioned Brachytherapy to the Urologist he sort of looked amused, although they might be able to offer it easier now.

I could name the surgeon but it's not allowed on here.  Needless to say, so far, I think he's someone from above and even if it goes a bit pear shaped I've had 3 good years.   I've never met him since that first meeting although I've seen him in his office.

Also I've always been impressed by the courtesy and care I've had from everyone I met.  At the op they were great.

All the best,
Peter

Colin, here are some things to think about and ask the consultants. Always take a written list of questions with you, so you don't forget to ask anything. Leave space to write the answers in, and do this during the consultation if possible, or the instant you come out. (My consultant grabs my question sheet and writes the answers on it.) Many places are happy for you to record the consultation on a smartphone providing you ask, and that enables you to go back afterwards and pick up bits you missed because you were thinking about something else at that moment. (One or two places will do that for you and give you it on a CD afterwards.)

With the N1 (lymph node spread), I would want to ask the urologist how certain they would be at catching all spread to lymph nodes with a RP (radical prostatecomy), how many nodes they expect to remove, and what the consequences of that might be (e.g. chance of lymphodaema afterwards). You have the option of radiotherapy afterwards if not everything was caught, but if there's a significant chance of needing to use that and ending up with side effects from both procedures, you would probably be better to go for just radiotherapy at the outset which is significantly more likely to catch everything and give you fewer side effects than having both procedures, and less likely to give you lymphodaema. Also, ask about the possibility of nerve sparing, which gives you a chance of getting natural erections again afterwards, although even with full nerve sparing, that doesn't always work again afterwards, and with partial nerve sparing the chance reduces. If you can't have full nerve sparing (and erections currently work fine), that might be another reason to consider radiotherapy instead. There are a number of different ways to perform a RP (robotic, keyhole, open (very rare now), retzuis sparing, neurosafe, etc), and you might want to ask which way they propose, and people here can then tell you what you might expect from their own personal experience.

For radiotherapy, there's a treatment pattern called "prostate and nodes" which they might use which treats the prostate and pelvic lymph nodes, sometimes with a brachytherapy boost to the prostate. (This often depends if that treatment centre has brachytherapy capability.) Again, ask about expected side effects. Ask if you could have SpaceOAR fitted to reduce impact on rectum (probably only privately, but they might not be happy to do it with the N1 anyway). Check with consultant, but I suspect the chances of lymphodaema (even with prostate and nodes) is vastly less than with a RP, and chances of damage to erection nerves is less. (Damage to erection nerves with radiotherapy shows up 2-5 years later, not at the time.) I believe the N1 puts you in the high risk category at many treatment centres, and for high risk patients the seminal vesicles are treated too, because they can't go back and do them afterwards, but you might want to ask this, although it makes no difference to you at the time. You might want to ask what the expected duration of the hormone therapy is. A T2xN1 diagnosis is not that common I think. For a T3xN1, chemotherapy is often offered too nowadays.

If you use my comments to make any decisions, do show my comments to the consultants so they can tell you if any of them don't apply to you, or if they consider risks of side effects or recurrence to be different from what I suggest. If I said anything you didn't understand, please ask - the better you understand the issues, the more you will get from these two consultations.

Edited by member 08 Dec 2019 at 10:23  | Reason: Not specified