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Advice on treatment options

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User
Posted 05 Jul 2017 at 14:14

Hello to all my new friends in this incredibly helpful community.

Like so many before me, I have been recently been diagnosed with prostate cancer..... see my profile for the details/time-line for my diagnosis.

I am trying to come to terms with having PCa, and what it may mean for me and my family in the future. An anxious time for all.

Currently researching the offered treatment options:-

1. Robotic Assisted RP
or
2. RT with neoadjuvant HT

with a view to developing an understanding of the risk/benefit of each of the ‘usual’ outcomes for these treatments (perhaps also reviewing the possibility of electing not to have any treatment ...... even though I have had my request for AS declined by my urologist)

For me, the priorities of the treatment are to:-

1. remove/destroy the all the localised cancer (no evidence of metastasis at this time)

2. reduce the risk of recurrence of the cancer

3. have salvage treatment options should the primary treatment 'fail'

4, minimise incontinence

5. reduce the effect of ED

6, not concerned about sterility

I would be very interested to know what other experienced and knowledgeable folk in the community think about these treatment options for the type of PCa that I have been diagnosed with.

Appreciate any feedback offered.

Thanks

 

 

 

 

X

User
Posted 05 Jul 2017 at 14:44

Hello Jack, belated welcome to the forum, although I see you have been lurking !!

Personally not surprised that AS wasn't offered but other than that I don't have the experience you need as my husband had permanent seed Brachytherapy and that probably isn't for you.

You will obviously know that you'll get helpful advice once the post is seen so hang in there until somebody else comes along.

In the meantime you could download The Toolkit from Publications or if you have a specific question you can ring one of the nurses on this site.

Good luck with whichever route you take

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 05 Jul 2017 at 16:28

With apex affected and perineural invasion I would want my dad/partner/brother to talk to a surgeon about whether open surgery might get a better outcome and if not, go straight for the DR / HT combo.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jul 2017 at 11:57

Which treatment to opt for when there are options can be difficult because there are no certainties and sometimes when a man is opened up a somewhat different situation is found to that which was anticipated. Also men can place greater importance on different aspects. For me incontinence would be the main concern. If this greater risk with surgery is accepted, I would say this is more likely to tick more of your concerns. However, this might still mean you needed some form of salvage RT/HT and the combined side effects of all treatments. HT/Seed Brachytherapy is close to surgery in terms of successful outcomes but whist a man still has a Prostate there is a potential for cancer to re-establish itself there.

Barry
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User
Posted 05 Jul 2017 at 14:43

Hh JackDee,

Click on my profile and you will see my husbands journey, he had RP at the hospital you named on your profile, 5 weeks today, recovery has been good, was in on the 30th, op on the 31st May out on 1st June, dry after 2 weeks, but puts it down to doing the pelvic exercises that he did daily, ED slight movement but not really concerned at this early stage. Was back at the consultants on Monday, not the news that we wanted, was not contained in the prostrate and his first PSA (which was done early than 6 weeks) came back 0.1,he is having another PSA test in 2 weeks and we will just have to take it from there. We wish you well on whatever road you go down.

User
Posted 05 Jul 2017 at 14:44

Hello Jack, belated welcome to the forum, although I see you have been lurking !!

Personally not surprised that AS wasn't offered but other than that I don't have the experience you need as my husband had permanent seed Brachytherapy and that probably isn't for you.

You will obviously know that you'll get helpful advice once the post is seen so hang in there until somebody else comes along.

In the meantime you could download The Toolkit from Publications or if you have a specific question you can ring one of the nurses on this site.

Good luck with whichever route you take

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 05 Jul 2017 at 16:28

With apex affected and perineural invasion I would want my dad/partner/brother to talk to a surgeon about whether open surgery might get a better outcome and if not, go straight for the DR / HT combo.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jul 2017 at 11:57

Which treatment to opt for when there are options can be difficult because there are no certainties and sometimes when a man is opened up a somewhat different situation is found to that which was anticipated. Also men can place greater importance on different aspects. For me incontinence would be the main concern. If this greater risk with surgery is accepted, I would say this is more likely to tick more of your concerns. However, this might still mean you needed some form of salvage RT/HT and the combined side effects of all treatments. HT/Seed Brachytherapy is close to surgery in terms of successful outcomes but whist a man still has a Prostate there is a potential for cancer to re-establish itself there.

Barry
User
Posted 06 Jul 2017 at 20:28

Hello Lynda,

Great that you are supporting your OH so well with this life changing condition.   Sorry to hear that your OH's cancer appears to have developed ECE, but the first PSA reading looks encouraging even if it is not 'undetectable'.  Fingers crossed for you both that the next PSA reading is going down.

Great to read about your husband's experience at the ARI with RARP.   Encouraged by the quickness and effectiveness of that treatment he had.  Yes, I have started daily pelvic-floor exercise to help minimise incontinence issues (whichever treatment I choose).

I am sure with the nerve sparing (both NVBs?) that ED will not be too much of a problem over time.

Thanks for sharing your story with me and the community.  It helped a lot.

Best regards

Jack 

 

Think like a proton....... and stay positive.

User
Posted 06 Jul 2017 at 20:34

Hello LynEyre,

I have read many of your posts and have great respect for your advice.

I will discuss the option of Open RP with my urologist......

Thank you for responding to my concerns and appreciate your advice.

Regards

Jack

 

 

User
Posted 06 Jul 2017 at 20:44

Hello Johsan

Many thanks for your welcome.    Yes, I have been reading many of the community posts so that I can learn from the experience and advice of others.

Yes, my urologist confirmed that Brachytherapy was not appropriate for my condition (and also it is only available at a different Scottish hospital 'down south').

I have had look at the toolkit and found it very useful.  Most of the publications are available at the UCAN (Urinary Cancer) centre at the hospital I am attending.  

Appreciate you taking the time to respond, and your good wishes.

Best regards

Jack

 

 

 

 

User
Posted 06 Jul 2017 at 21:02

Hello Old Barry,

Appreciate your advice.  You words of wisdom echo with my own thinking so far.   I am tending towards RP (either Robot-Assisted or Open) because (a) it removes the prostate etc (b) allows the urologist to visually check/explore the situation internally (c) allows salvage RT/HT should it be required......but still have concerns about 'positive margin' risks and if 'nerve (NVB) sparing' is an option for me......

Thanks again,

Best regards

Jack

 
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