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

Notification

Error

Husband recently diagnosed - struggling with treatment options

User
Posted 28 Jun 2019 at 00:52

Hello, this is my first ever visit to a forum and I would be most grateful for any information/advice to help me to support my husband. He is really struggling with how to decide which treatment option to take. We met with urologist on 6th June to receive biopsy results, much of the appointment focused on the investigations and diagnosis, leaving little time to discuss/understand the treatment options. Paul wishes the Consultant would advise the way forward but it seems the decision has to be your own, understandable I guess as only you can know what you think you can live with in terms of risk and side effects. Paul has to let urologist know whether he wants surgery or radiotherapy. 

Paul is leaning towards HT/RT, mainly because he fears that RT would be required after surgery anyway, so why not start with RT? Can anyone help with guidance on likelihood of recurrence?

Paul is 61, he had a routine medical where PSA test was done (with hindsight he had some symptoms but didn't act on them, frequent peeing at night, and urgency at other times, we've been blaming our youngest dog for getting us up in the night and now we've realised that it was Paul waking her up!) PSA was 18, MRI showed PI-RAD 5 peripheral lesion abutting the capsule measuring 14mm and second lesion PI-RAD 5 near the apex of prostrate- letter says no definite evidence of capsular involvement but the presence of microscopic disease possible. Template guided biopsy noted Gleason 3+4 in 16 cores out of 26. The maximum core involvement was 80%- perineural invasion noted. 

Does anyone have any insight into what the risk of reoccurrence might be based upon the above.

Thank you so much for taking the time to read this.

 

 

 

User
Posted 28 Jun 2019 at 08:10

Hello Dasha,

Really sorry you find yourself here, but you will get some excellent support.

You might want to read an answer I recently gave to a very similar question:

https://community.prostatecanceruk.org/posts/t21432-First-post---time-to-choose#post218948

PSA 18 is just under the "high risk" bar (PSA 20), but not really significantly different from the PSA 21 in that post. Also, with a PIRADS 5, if he had a prostatectomy, there's a good chance the Gleason score would be upgraded to 5 when the path lab analysed the removed prostate afterwards, and with no margins and a chance micromets (microscopic disease too small to see on a scan) may have escaped just outside, I personally would be looking at radiotherapy.

Have they said what form of radiotherapy it would be?

You should get the PCUK Toolkit packed full of information on the different treatments. You can have it posted to you, or download it. It is quite big, and I would suggest getting one posted, but you could start looking at the download one today.

If you happen to be in the Reading, Berks area, the Reading Prostate Cancer Support Group will have a manned information stand in Broad Street tomorrow (Saturday 29th June) outside Marks & Spencer from 10am to 4pm - do pop along for a chat and we'd be very happy to talk with you.

Please do ask us absolutely anything that springs to mind here (or on the stand tomorrow).

Edited by member 28 Jun 2019 at 08:25  | Reason: Not specified

User
Posted 28 Jun 2019 at 09:17

Feel free to have a look at my post when I had to make the decision 12 months ago. There is no right or wrong option but what is best for your circumstances. One of my friends opted for surgery and I opted for RT and we both feel for our circumstances we made the best decision and we are both now 12 months past treatment. Look at all the facts, look at your circumstances, make a decision and never look back as hindsight is unhelpful as we make decisions all the time and have to live with them. Best of luck and all the best. 

User
Posted 28 Jun 2019 at 11:51

Dasha,

Also consider reaching out to the specialist nurses, phone number at the top of this web page.

They can talk through different treatments, but they can also talk through emotional issues - indeed emotional issues are the most common type of call to them, so what Paul and you are going through is very normal after diagnosis, and help is available.

Show Most Thanked Posts
User
Posted 28 Jun 2019 at 06:20

There are some really good nomograms that will give you an insight into the risk associated with prostatectomy and biochemical recurrence for his initial biopsy and staging here:
https://www.mskcc.org/nomograms/prostate

Other decision making factors are:
Nerve sparing yes or no?
Has he been recommended for adjuvant radiotherapy?

The really big bonus of surgery over RT at this stage is not having to have hormone suppressants AND you will get a complete pathology that us simply not possible with RT.

The reason your consultant cannot make a recommendation is RT and RP have similar outcomes at your staging. You need to understand the side effects of both and decide which is the least worst option for you.

 

 

Edited by member 28 Jun 2019 at 06:22  | Reason: Not specified

User
Posted 28 Jun 2019 at 07:21
Thank you Francij1

Urologist said risk of losing right side nerve. No recommendations given by urologist, waiting for appointment with surgeon, Paul has an appointment on 18th July with Oncologist. Completely understand what you mean by least worst option, side effects are a real concern for him and I can see from other threads that no two experiences are the same. I guess it is not unusual to find it difficult to decide, at the moment he is changing his mind on a daily basis.

User
Posted 28 Jun 2019 at 08:10

Hello Dasha,

Really sorry you find yourself here, but you will get some excellent support.

You might want to read an answer I recently gave to a very similar question:

https://community.prostatecanceruk.org/posts/t21432-First-post---time-to-choose#post218948

PSA 18 is just under the "high risk" bar (PSA 20), but not really significantly different from the PSA 21 in that post. Also, with a PIRADS 5, if he had a prostatectomy, there's a good chance the Gleason score would be upgraded to 5 when the path lab analysed the removed prostate afterwards, and with no margins and a chance micromets (microscopic disease too small to see on a scan) may have escaped just outside, I personally would be looking at radiotherapy.

Have they said what form of radiotherapy it would be?

You should get the PCUK Toolkit packed full of information on the different treatments. You can have it posted to you, or download it. It is quite big, and I would suggest getting one posted, but you could start looking at the download one today.

If you happen to be in the Reading, Berks area, the Reading Prostate Cancer Support Group will have a manned information stand in Broad Street tomorrow (Saturday 29th June) outside Marks & Spencer from 10am to 4pm - do pop along for a chat and we'd be very happy to talk with you.

Please do ask us absolutely anything that springs to mind here (or on the stand tomorrow).

Edited by member 28 Jun 2019 at 08:25  | Reason: Not specified

User
Posted 28 Jun 2019 at 09:17

Feel free to have a look at my post when I had to make the decision 12 months ago. There is no right or wrong option but what is best for your circumstances. One of my friends opted for surgery and I opted for RT and we both feel for our circumstances we made the best decision and we are both now 12 months past treatment. Look at all the facts, look at your circumstances, make a decision and never look back as hindsight is unhelpful as we make decisions all the time and have to live with them. Best of luck and all the best. 

User
Posted 28 Jun 2019 at 11:28
Thanks Andy. Urologist hasn't indicated type of radiotherapy, assume we will find out more at appointment with oncologist on the 18th. Very interested in your comment on radiotherapy as Paul is leaning towards it. At the moment he is finding it difficult to talk to anyone about how he feels, he has never been much of a talker, but the fear of showing his emotions is also holding him back at the moment. I have ordered the toolkit now which we can work through together.

Thanks Christian, good advice, the decision you make is the right decision at the time, and you'll never know what the alternative could have been so no regrets. The challenge now is making the decision....

User
Posted 28 Jun 2019 at 11:51

Dasha,

Also consider reaching out to the specialist nurses, phone number at the top of this web page.

They can talk through different treatments, but they can also talk through emotional issues - indeed emotional issues are the most common type of call to them, so what Paul and you are going through is very normal after diagnosis, and help is available.

User
Posted 28 Jun 2019 at 12:52
I will make 2 comments.

1) There are a number of types of PCa, some say at least 27 and these affect men differently according to their individual cancers , staging and reaction to various treatments. That being the case, an individual does not know with certainty how he will respond to a given treatment(s) in terms of being successful in eradicating it or slowing it down and how bad the after effects will be. So a man should not be swayed by how a few men say they have fared which may be due to factors that don't apply to an individual. Nomograms are based on averages and as we know this means some do better and others worse than an average.

2) As regards RT, this largely takes the form of External Beam Radio Therapy (EBRT) of which there are several versions with some using more advanced machines and ways of delivery. There are 2 ways of delivering RT by Brachytherapy, low dose by radioactive seeds and high dose by inserting radioactive probes into the Prostate and then withdrawing them as part of the operation. Both of these Brachytherapy methods can be supplemented with EBRT if considered appropriate. For suitable candidates Brachytherapy is becoming more popular but not every hospital can administer it. Where this is the case consultants at those hospitals might not even mention the possibility, so a man could ask whether he is suitable and where he could have such treatment elsewhere if he wishes to consider more options.

Barry
User
Posted 28 Jun 2019 at 20:04
Thanks Barry, I'll let Paul know to ask the oncologist.
User
Posted 28 Jun 2019 at 23:30

Hi Dasha,  

I've written my own opinion for my own case on this several times.   I wanted it cut out as soon as possible.  I still believe in that although now realise sometimes HT/RT can be a better solution in some cases depending on the chance of it being outside the prostate and where it is.

You can frighten yourself reading a lot things. There is always a chance of recurrence although as you probably know it gets higher as Gleason, Stage, pre-op psa increases.  Although I've always hung on to the size and margin being something to consider and actually after an op you can find out more about it.   If you really want to know, I wasn't keen on asking too much although some have full print outs.

We have a knowledgeable person called Lyn who lives on that side of the Pennines like you, and I seem to recall her opinion was it's better to have RT if there is a high risk of recurrence rather than go back.  Although I'd feel sure she would put caveats on that.  My own opinion is I'd prefer both treatments if there was a strong case, but I'm a belt and braces sort of person and the type of person figures in the treatment consideration.

Some people worry about after effects whereas my priority was the best treatment whatever.

 I just noticed your appointment is with an oncologist.  When I had the urologist appointment he said if I chose RT they'd give me a hormone injection almost right away.   As it was I got him to ring the surgeon right away.  If I was in your shoes and thought an operation was likely I'd be trying to get the urologist to speak to the surgeon.  No point in keep waiting for appointments to talk about treatment. when you could be having treatment.   All the best, Peter

User
Posted 29 Jun 2019 at 03:00
My PSA was 16.7 and Gleason 4+3=7. I opted for surgery by a highly recommended surgeon and the post-operative histology showed limited spread outside the capsule. My PSA has been undetectable for the last year, I am continent but impotent.

Two friends had surgery within the last year by two other top surgeons and they both now have recurrence and will have to go down the HT/RT route.

Yours is a very difficult choice. Best of luck.

Cheers, John.

 
Forum Jump  
©2024 Prostate Cancer UK