I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Da Vinci - Have I made the right decision?

User
Posted 06 Apr 2019 at 12:49

I am due to meet the robot just after Easter and I am wondering if I made the right decision. It's difficult when one's consultant is a surgeon who would like another victim :-)

It is a Gleason 4+3, PSA 4.88 the MRI shows a high grade disease involving the seminal vesicles. I'm in my 70s so I have no need of my bits except for the odd pee. I'm then to have radiation.

My thinking has been, get rid of the thing rather than have it treated and maybe go through surgery later when I'm a bit older and a bit more unfit. I'm only now getting cold feet, so if someone could tell me that I'm following the right course I'll sleep better.

User
Posted 06 Apr 2019 at 14:19

I am sorry John but no one can tell you if you are making the right decision as no one can predict the outcome of your treatments. They certainly seem to want to throw the kitchen sink at it. Have you discussed your situation with an oncologist.? Are they keen for you to have surgery too? Has your case been discussed at a MDT  meeting. Both treatments means two sets of possible side effects.

I think some men with your pre op stats would go the HT/ Radiotherapy route rather than put themselves through surgery as well. Of course some men  go for surgery then need HT/ Radiotherapy later anyway.  What did you mean when you said your surgeon would like another victim? You shouldn't feel obliged/ bullied into surgery  to please the consultant.

I have read that there is good evidence to remove the" mothership" even if it does not clear all of the cancer in one hit as it can give you extra cancer free time in combination with HT/ RT.

I am  sure more  experienced people with will come along to give you their views.

Best Wishes

Ann

 

User
Posted 06 Apr 2019 at 16:10

I would also suggest you should be reviewed by a MDT, and oncology if you haven't.

When I was discussing the "what ifs" with the consultant at the very beginning of my diagnosis (before we knew what the extent was), I'm pretty sure they said they wouldn't do a RP in cases where there's spread to the seminal vesicles.

Also, you wouldn't have surgery after RT. If necessary, you would have more RT.

User
Posted 06 Apr 2019 at 16:25

Hi CB, I agree with previous comments that before making any decision you have spoken to an oncologist as well as your surgeon to get their take on things.

The final decision is ultimately yours but have a look at this https://prostatecanceruk.org/prostate-information/just-diagnosed/locally-advanced-prostate-cancer

With seminal vesicle involvement the operation is slightly trickier and there is a fair chance you would require follow up hormone therapy and radiotherapy. This places you at a Stage  3b or T3b.

On the plus side the removed prostate etc, would be thoroughly examined by pathologists and allow for more accurate staging.

You are in the right place for information and advice.  Would also suggest you telephone the PCUK nurses on 0800 074 8383. They are marvellous.

 

Ido4

User
Posted 06 Apr 2019 at 17:13

I assumed that since I was sent by the urologist to see the surgeon that was the route that they wanted me to follow.  Not much about oncology was mentioned.  I've had renal cancer and several melanoma cured by the knife so I do have some faith in it, even if it is robotic. The surgeon said he might fish out some of the lymph system depending on what he found in there. I've had to stop my testosterone replacement therapy which I've been on for some years and I don't like the result.

I don't know what MDT might be.  All I want is ten comfortable years before dementia kicks in 😎

Thanks for all the advice.

User
Posted 06 Apr 2019 at 17:32
The MDT is the “multidisciplinary team”. A meeting (normally held weekly) of the great and the good from all the appropriate disciplines who discuss the case and recommend the best treatment.

I would add to the recommendion to see an oncologist before making your final decision. It is your choice, and the HT/RT route can be gentler in terms of side-effects.

User
Posted 06 Apr 2019 at 21:22
John,

In your first post you say you feel it might be better to have surgery now rather than later after treatment (most likely radiation, However, although RT is very occasionally given after surgery, operating this way makes the operation more difficult and the side effects more likely to be worse. In fact very few surgeons are prepared to do it in the circumstances. RT after surgery is therefore a more common way, assuming the surgery does not completely eradicate the cancer.

I suggest you download or obtain a hard copy of the 'Toolkit', which is available for free from the publications section of this charity. It provides a lot of information about PCa, various treatments and side effects. This may help you in making your treatment decision. Of course not all men are suitable for all treatments but I would have thought from what you say that you might benefit from External Beam RT even if you are not suitable for one of the two forms of Brachytherapy. I agree with previous suggestion that you also see an oncologist before finalizing your treatment decision.

Barry
User
Posted 06 Apr 2019 at 21:31

Hi, Like you I had surgery on skin cancer, though non-melanoma, and was advised it was the gold standard.   Although they say outcomes are very similar with Prostate Cancer for surgery and radiotherapy.

Also it would be unusual for a case not to be reviewed by an MDT and it appears they've said you will have both surgery and radiotherapy.    It's unlikely you'll have surgery after radiotherapy and unlikely you'll have it when you're over 75 unless you're exceptionally fit.

There are papers that say getting rid of the main tumour, i.e. cutting it out,  is beneficial in the longer term.

It's often said Prostate Cancer is slow growing but with a 4+3 it might not be the case and actually having surgery will let you know if 4+3 is genuine as mine was upgraded to 4+4 with a proper pathology test, or maybe a later time.  Upgrading isn't unusual.

Having second thoughts isn't unusual either as I kept thinking it but if it complicates matters and raises suspicions about your doctors and them about you it might not be for the best.

So assuming you've been through a standard procedure and will have surgery followed by radiotherapy going with the flow could very well be the safest route.

Also having radiotherapy quickly after surgery is called adjuvant radiotherapy and for most cases has superior outcomes to having just the one treatment although it's usually only given to cases with the potential of recurrence.  Having radiotherapy after it's recurred is called salvage radiotherapy and the outcomes aren't as good.   So your case looks like good treatment.

User
Posted 06 Apr 2019 at 21:49
One question that it might be worth asking an oncologist is whether, with RT, what the likely prognosis is. Given that you’re in your 70s now, even if RT is likely to do nothing more than slow down the progression of the cancer, it may still be worth having if it slows it down sufficiently to let you die with it rather than from it. RT is a lot easier to handle than surgery in terms of side-effects.

I’d certainly ask to speak to an oncologist at least. You have an absolute right to do so.

Cheers,

Chris

User
Posted 07 Apr 2019 at 16:29
Hi CB, I was scheduled for a RALP, but my surgeon - for whatever reason - made an appointment for me to see an oncologist which I did, four days prior to my scheduled surgery. I’m just nearing the end of my radiotherapy now, having cancelled the surgery. I am so grateful to that surgeon for forcing the issue, only when I spoke to the oncologist did I realise how badly I was coping with the prospect of the side effects of the surgery. I’m a good bit younger than you and my Gleason was 3+4, my highest PSA was 16, but then again my prostate was/is apparently only 16cc in volume. We are all different, our reactions to every situation are all different. I had originally “ruled out” RT after the first Urologist that I spoke with told me that surgery would not be an option later if I had RT first. So, I would definitely recommend speaking with an oncologist before deciding either way. Treatment options are bewildering and new developments are constantly changing the landscape of what is possible and the degree to which some side effects occur, so you need up to date information from whoever is going to provide whichever treatment.

User
Posted 07 Apr 2019 at 19:31
If you were my dad I would want a very clear explanation of the perceived benefit of putting you through surgery with all the associated risks and recovery if you are going to need adjuvant RT anyway. I would also want to see an oncologist to discuss radiotherapy as the primary treatment instead.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
©2019 Prostate Cancer UK