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Decisions Decisions!!

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User
Posted 07 Nov 2019 at 18:41

My husband (aged 57) was diagnosed with PCa in August. His psa has risen from 5.2 in April to 6.1 in May and 7.2 in October. His Gleason score is 3 + 3 staging T2.

 

We initially saw a consultant in September regarding a robotic prostatectomy who advised us that because of the location of the tumour the nerves could only be spared on the one side. This lead us down the path of seeking an alternative treatment. We have been offered HDR mono brachytherapy and initially thought this was a better option as the side effects seemed much less. We are however struggling to find much information online regarding the long term success rates of this form of treatment. We have also been told by the consultant that if the HDR mono brachytherapy is not successful then the only option available would be hormone therapy. 

 

We now have a few days to decide which treatment to go for and are struggling to decide. Any help or advice would be appreciated.

User
Posted 09 Nov 2019 at 18:04

Originally Posted by: Online Community Member
If sex is important in your relationship, with his Gleason score of 3+3=6, you might consider, with the advice of your medics, whether any radical treatment might be deferred ... 

Cheers,John.

 

I suspect with a T2 and only partial nerve sparing on offer, he is not a candidate for AS regardless of his Gleason score. 

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

User
Posted 02 Jan 2020 at 09:20

Dear Cariad 123

I have just read your posts and as with many others in the community I faced the decision about Brachy vs RARP as all investigations, test, MRI etc suggested it was localised.

After months of research about which option to choose I went the surgery route and I am now very pleased I did.

Not only has my recovery from the operation 5 weeks ago been very easy with few of the side effects I was worried about - apart from the first week with shoulder pain and disturbed nights sleep; it was only when the surgeon was doing the operation that he was able to establish that my cancer was not as localised as the MRI and biopsies might have suggested and pathology tests post operation have confirmed that cancer was in present in the margins he cut out.  Surgeon did nerve sparing and I am pleased to report all already good in that department!

Please feel free to contact me if you would like any additional information about my experience which might assist you with your decision if you are still undecided.

Best wishes

 

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User
Posted 07 Nov 2019 at 21:01
Brachytherapy, external beam radiotherapy and surgery all have more or less identical outcomes in terms of 5 years progression free, 10 year survival, % needing salvage treatment. The idea that EBRT or brachy are more risky because they can't be followed by salvage surgery is a bit of a red herring as, although failed surgery can be followed up by salvage RT, the outcomes are not great (statistically).

With a G6 I can see why you would hesitate over radical treatment; if my husband had been suitable, we would have gone with brachy although this would have been with hormone treatment. As it turned out, his surgery failed anyway.

Have you explored possibilities such as focal laser therapy, cryotherapy or HIFU? You may have to go overseas to get FLA or green light therapy but the side effects are significantly more tolerable.

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

User
Posted 07 Nov 2019 at 21:16
In overall terms there is not a lot of difference between outcomes of the usual treatments in terms of long term success. However, there are differences in the timing and extent of various side effects. Some men are more suited more particularly to a particular treatment, either for medical reasons or choice due to preference for personal reasons. In the situation here, I would suggest you obtain a second opinion and consider the options on offer and any others that me be thought appropriate. One of the types of focal treatment may be appropriate for example but only a well qualified consultant and one with a broad knowledge of treatments can say and to do so would need to see scans and biopsy results and histology to give an opinion. One further point, Patients are generally only offered treatment available at the hospital they attend and to have something else it would be necessary to have the treatment in another hospital.
Barry
User
Posted 08 Nov 2019 at 07:40
Many thanks for your replies and information. We were not aware that salvage RT following a failed prostatectomy was not that successful so I think this information is pushing us again towards the mono brachytherapy.

Our main concern is that our local cancer centre has just moved from offering LDR brachytherapy to HDR mono brachytherapy so my husband will be one of the first men to have the procedure. I can find loads on information online where brachytherapy is used in conjunction with HT and EBRT but very little when given as a mono therapy.

We did ask the consultant about HIFU but he advised us “not to go down that road”!!

User
Posted 08 Nov 2019 at 08:26
As others have said, go for a second opinion(s).

Have you obtained the ‘Toolkit’ comprehensive information folder from the publications section of this website?

Best of luck.

Cheers, John.

User
Posted 08 Nov 2019 at 13:30

I think some of it comes down to individual 'make-up'. I have a friend who had Brachy and seems fine with the decision albeit with the known side-effects. Me being 'tightly wound' and somewhat easily stressed decided for surgery as it seemed a more 'definitive' option but even now it is hard to know which was the best route at the time! We are lucky in that we have more than one option of course, but that can also mean 'how does one decide'!

Good luck :-)

User
Posted 08 Nov 2019 at 13:47

Another area that might be worth exploring is proton beam with spaceoar. They offer it near Swansea and just opened a facility at the Rutherford in Thames Valley. For Clinicians here it is met with skepticism but it’s quite routinely used in the US and Czech. Outcomes similar to other beam treatments albeit more accurate plus less collateral damage and risk of secondary primaries. Negatives  can be cost.

User
Posted 08 Nov 2019 at 23:02

Not all consultants have a grasp of treatment outside their specialty. If you are interested in considering Focal Therapy, the top man in the UK and possibly further afield is at UCLH (University College London Hospitals) for NHS patients. Private patients may also be seen there or at one of the other hospitals he attends. He has made the point that the Prostate is the last gland where it is almost always treated wholly by surgical removal or a form of RT, thus more risk of loss of function and side effects.    

 

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

Barry
User
Posted 09 Nov 2019 at 09:02

I face a similar dilemma having been offered both radical prostatectomy or hypofractionated rt (20 fractions over 4 weeks). Because I had surgery for colon cancer 10 years ago I'm rather erring towards rt -- so I've declined offer to participate in PACE A trial which compares surgery to stereotactic rt (5 fractions). However, after extensive research it seems clear that stereotactic rt is showing very promising results and is at least as effective as hypofractionated rt and with considerably less patient inconvenience and v similar side effects. My hospital (in NE England) could do it privately but I'm awaiting some costings.

They also offer SpaceOAR with both options and this does seem a very worthwhile development in reducing side effects of rt . It also now seems to be a new NICE guideline.

My oncologist has rather dismissed Brachytherapy as being superseded by the latest external beam treatments -- though has mentioned Proton Beam (if you can afford it) at the Rutherford Cancer Centre.

I'd be interested in other views --- its obviously a very fast moving area of cancer treatment.

User
Posted 09 Nov 2019 at 10:11

DJW

At some point someone put me onto a site called Practice Update, not sure if the following is relevant to you. 

https://www.practiceupdate.com/content/intensity-modulated-fractionated-radiotherapy-versus-stereotactic-body-radiotherapy-for-prostate-cancer/89827/62

I never understand what they are talking about, but I am sure our stalwarts can pick the bones out of the articles.

You may have to sign up to the site.

Thanks Chris

User
Posted 09 Nov 2019 at 10:25

Yes, thanks.

The UK & Canadian PACE B trial (now closed) made exactly this comparison and has now reported on Toxicity findings: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30569-8/fulltext

Interestingly in neither PACE A or PACE B is Androgen Deprivation Therapy used and I'm certainly keen to avoid that if possible.

 

User
Posted 09 Nov 2019 at 14:22
If sex is important in your relationship, with his Gleason score of 3+3=6, you might consider, with the advice of your medics, whether any radical treatment might be deferred for a period.

Whatever treatment you elect for, it will impinge on male sexual function to a greater or lesser degree.

If that is not a concern get the bugger gone once and for all.

Best of luck!

Cheers,John.

User
Posted 09 Nov 2019 at 18:02
DJW, I can’t imagine why an oncologist would suggest that brachy is being superseded unless he is a private practitioner generating interest in his latest (commercially available) development. Brachy has emerged as a strong contender for both early diagnosed, low risk prostate cancers and those diagnosed later with a more aggressive typology.

Having said that, if you were my dad I would snap the onco’s hand off at the offer of cyber knife (the more common name for stereotactic RT) on a trial! It is looking very exciting, has far fewer side effects and is well established overseas.

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

User
Posted 09 Nov 2019 at 18:04

Originally Posted by: Online Community Member
If sex is important in your relationship, with his Gleason score of 3+3=6, you might consider, with the advice of your medics, whether any radical treatment might be deferred ... 

Cheers,John.

 

I suspect with a T2 and only partial nerve sparing on offer, he is not a candidate for AS regardless of his Gleason score. 

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

User
Posted 09 Nov 2019 at 19:47

You are correct in your thinking - active surveillance was unfortunately not an option for us. 

 

I would just like to add that I have found this forum invaluable since this journey began for us back in April. 

 

Good luck to everyone who, like us, are also struggling to make a decision xx

User
Posted 09 Nov 2019 at 20:02

Hi have a read of my two posts I have put on under Davegr I am post 2 weeks after robotic surgery I was a T2a Gleason 3+4=7 50% in one prostate they have done nerve sparing to my left but until my operation he is not sure what he can do for my right side, But have a read of my posts and I hope they help in being positive.

Dave

User
Posted 02 Jan 2020 at 09:20

Dear Cariad 123

I have just read your posts and as with many others in the community I faced the decision about Brachy vs RARP as all investigations, test, MRI etc suggested it was localised.

After months of research about which option to choose I went the surgery route and I am now very pleased I did.

Not only has my recovery from the operation 5 weeks ago been very easy with few of the side effects I was worried about - apart from the first week with shoulder pain and disturbed nights sleep; it was only when the surgeon was doing the operation that he was able to establish that my cancer was not as localised as the MRI and biopsies might have suggested and pathology tests post operation have confirmed that cancer was in present in the margins he cut out.  Surgeon did nerve sparing and I am pleased to report all already good in that department!

Please feel free to contact me if you would like any additional information about my experience which might assist you with your decision if you are still undecided.

Best wishes

 

User
Posted 03 Jan 2020 at 10:02

Hi Grant60


Many thanks for taking the time to respond.  Glad to hear that you are recovering well. 


My husband has however now made his decision. He has chosen HD brachytherapy as a monotherapy and is booked in for two implants - the first on 13 January and the second on 20 January. 

 

Information that we have gleaned from members on this forum was an invaluable tool in our decision making process. Therefore it is my intention to update my thread once my husband has completed his treatment to inform other members of his experiences in the hope that our journey might help others.

 

User
Posted 03 Jan 2020 at 11:30

Hi

i went through a similar journey in 2019 as was a few doors down from Grant in the ward having the Retzius sparing robotic assisted prostectomy with neurosafe. Surgeon was one of the best and is a pioneer of minimally invasive surgery. I went private at London Bridge and very happy with the outcome. Leaks have pretty much stopped three weeks post catheter. I have one side of nerves spared as it was thought the other side was Focally involved with tumour spread that was thought to be localised. However when pathology was done it was all shown to be clear with very good margins so the cancer was indeed localised. I’m happy to report that potency is about 70 to 80% what it was before surgery and should improve over time.

certainly from my perspective surgery was a very good way to go when things were localised given implications of radiotherapy and potential impact on the bowel and bladder plus possibility of later secondary primary’s which are more relevant for me because I’m only 52.

good luck with whatever you choose and path you take as has to be the one that is right for you and your family given the circumstances. Very best wishes for 2020!

TG

Edited by member 03 Jan 2020 at 11:33  | Reason: Not specified

 
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