Not enough options offered by local Hospital trust!

User

Posted 03 Jul 2017 at 19:16

Since I cannot get to add to my old thread I am starting again, and attempting to get some answers before I have to make a decision within a week.

To see what my PSA has been before anyone replies, do see my profile, about my status & progress.

My second MRI (4 years after #1), the consultant would say nothing more but

"a significant change, so we need to put you to sleep this time for another biopsy"

Just two options offered, Surgery & Radiotheray, where the latter my wife thinks thats a bad idea and asked him why not HiFu?

Is this the postcode lottery side of treatment because other hospitals seem to be able to offer a bigger range of options.

What the surgery option offered is unknown wether its a lot or just the growth.

Any feedback would be helpful, because theres more options mentioned on here.

Brighton & Haywards Heath are my Hospitals when I attend.

Had posted for a forum member to respond back in March but two requests still in my SENT folder at my inbox brought no response.

Eat healthily, take regular exercise and keep positive.

See my profile for PSA & my archived thread too.

User

Posted 04 Jul 2017 at 02:51

Hi,

Surprised and sorry you have not received an answer to your previous post.

Very few hospitals have trained operators and equipment to offer HIFU or Cryotherapy and where these exist it is usually to treat NHS patients within a trial as a salvage treatment, although both treatments are more readily available as primary treatment for suitable private patients at a few facilities.

If a man is able to pay or his insurers covers the cost and he is prepared to travel, there is more treatment choice abroad. Proton Beam and Nanoknife (irreversible electroporation) to name just two.

To answer your question about whether the entire Prostate is removed with surgery or only affected parts, it is the entire organ which is removed in an intricate operation but leaving the nerve bundles if these seem unaffected to maximise the chance of post operative erections. Additionally, any suspect lymph nodes are likely to be taken as part of the operation.

As you have been told you are going to be put to sleep, it would seem you are to have a template biopsy and you need to obtain a full report on how much and where cancer is found as this can influence treatment choice.

PS There are several ways surgery and RT can be done and you should ask more precisely what you are being offered and are suitable for.

Edited by member 04 Jul 2017 at 02:56 | Reason: Not specified

Barry

User

Posted 04 Jul 2017 at 09:30

Your previous threads are on the old forum which is archived - you can see them but not interact with them.

HiFu is not generally available in this country as a primary treatment and its results have not been great overseas although it seems to be a great salvage option for some when primary RT has failed. So no I don't think you are suffering the postcode lottery.

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

User

Posted 04 Jul 2017 at 20:04

You are running before you can walk and unfortunately, a little information can cause misunderstandings.

A TURP is not a curative treatment for prostate cancer, it is a boring out so that men who have problems weeing (possibly because the tumour is blocking the urethra) can pass water.

Radiotherapy includes brachytherapy, which is the same as the seeds someone told you about. There are two types of brachytherapy - one where the seeds are placed temporarily and one where they are left in the prostate. Brachytherapy is having excellent results but is only suitable for men that have been diagnosed early and have a smallish prostate. If you are deemed suitable, you would be fortunate to have the opportunity.

Hormone treatment is used for men who are incurable OR to support radiotherapy.

Surgery removes the whole prostate. If you are diagnosed early and the tumour is not near the outside of the gland, they can remove the prostate but leave the outside web of nerves, which reduces the risk of permanent side effects.

HIFU is, as we have already told you, still considered experimental in this country as a curative treatment because in other countries it has not been successful in getting a cure. However, it has been good for men who already had radiotherapy and then the cancer came back.

Best thing you can do is order the toolkit from prostate cancer UK and then wait until all your results are in.

Edited by member 07 Aug 2017 at 15:23 | Reason: Not specified

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

User

Posted 04 Jul 2017 at 22:32

Sometimes an oncologist considers it is helpful to augment HT Brachytherapy, be it seeds or high dose, with some fractions of external beam so you will need to know this if Brachytherapy is chosen.

There is also another way of delivering RT and that is by Cyberknife but again it is not usually given as an initial radical treatment within the NHS.

With surgery it is possible to follow this with RT as a salvage treatment and it is increasing being given anyway after surgery as a sort of belt and braces approach. It is far more difficult to have surgery after RT and most surgeons will not do it.

As with other treatments HIFU has been refined and works best where only one side of the prostate and preferably a small part at that, is affected by cancer. One big advantage is that in need HIFU focal ablation can be repeated. If you want to further investigate this you could seek a private consultation with Professor E whose name forum rules prevent me from giving but he is widely regarded as the top focal man in the UK. He is included in this video which is very interesting and you will note that results are good in the short term. The experimental tag is because only the passage of time will show how successful the procedure is long term https://www.youtube.com/watch?v=CHchSGAesg8

If you are not happy with what you are offered or wish to discus further options, a second opinion could prove helpful.

Barry

User

Posted 05 Jul 2017 at 10:16

I too am in the Brighton NHS trust and was diagnosed in March - Same sort of age as you and reasonably fit. I opted for the Radical Prostatectomy surgery and this was done robotically and undertaken some 2 weeks later in Eastbourne. The surgery was fine - no trauma or problems and I went home the following day.

The only immediate after effects was the discomfort of the catheter which disappeared the moment it was removed (after 2 weeks) and since then things have got better and better from a physical point of view.

Incontinence was minimal from the start (if 10 was perfect then I was around an 8.5) and now am pad free most days (9 weeks post op). ED was apparent at the start however that is improving daily and is back to about '8 out of 10'.

I am due my follow up with the consultant in a couple of weeks so I await the prognosis from a medical perspective but at the moment am VERY pleased I took the RP option.

I hope this helps in some way .......

User

Posted 13 Jul 2017 at 11:35

You could contact Kings College Hospital, where Dodgy007 had Nanoknife (Irreversible Electroporation), if you would like to investigate this possibility. Unfortunately, he has not been in recent contact but immediately after the op had a lot of pain and medium to long term results are unknown for this procedure. Again Prof E, whose name was in a previous link I gave has carried out this procedure as well as HIFU and if you are still strongly favoring HIFU, a consultation with him on your suitability could be helpful. Should you decide to do this you should ascertain whether he can call all your histology and scans over or whether you will have to get this put on a disc(s) for him.

Barry

User

Posted 13 Jul 2017 at 12:32

Thanks Heenan73 for your post.

My wife seems convinced in her mind about HiFu is the best option. I cannot change that.

The Brighton Trust does have it listed if it were a private treatment, and heard about Southampton & local private hospital offers it too.

I dont doubt the consultants offerings or that anything will be hidden, but as of now we need to wait for the results of Tuesday.

Just the 'substantial' word was a wee bit concerning when that wasnt explained enough or like before, talked more about the MRI scan result.

I feel pleasantly at ease how I feel today, with minor pain based really on just having had that catherter tube, and every 4 hours to keep rear end pain down to enable to sit confortably. Asked GP for some more pads, cant stop dribbling but its great its clear, not discoloured.

Nothing about PC is really of an urgent nature so we get time to digest and think.

Eat healthily, take regular exercise and keep positive.

See my profile for PSA & my archived thread too.

Show Most Thanked Posts

User

Posted 04 Jul 2017 at 02:51

Hi,

Surprised and sorry you have not received an answer to your previous post.

If a man is able to pay or his insurers covers the cost and he is prepared to travel, there is more treatment choice abroad. Proton Beam and Nanoknife (irreversible electroporation) to name just two.

PS There are several ways surgery and RT can be done and you should ask more precisely what you are being offered and are suitable for.

Edited by member 04 Jul 2017 at 02:56 | Reason: Not specified

Barry

User

Posted 04 Jul 2017 at 09:30

Your previous threads are on the old forum which is archived - you can see them but not interact with them.

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

User

Posted 04 Jul 2017 at 19:08

Thanks folks for the two replies and the one via PM.

So today was my assessment ready for a weeks time my second biopsy, & I cannot find out as yet wether its a full spread or area defined biopsy. At least I will be asleep and body relaxed unilke last time in 2013 all tense and being watched by what appeared to be students. Of the 12, 2 really spiked me, and was in pain for some weeks after with spasams internally.

The radiotherapy option doesnt sound fantastic, as the alternative to surgery & theres a number of versions on radiotherapy, & my consultant hasnt stated which, I guess more will come forth after the biopsy results.
The internal seed version sounds scary it can be picked by airport scanners!
https://www.cancer.org/cancer/prostate-cancer/treating/radiation-therapy.html

I want real detail for a choice not be pushed into something I may regret and have to live with suffering of a kind I cannot go down a second path because of the first as some are discussed of in that way.

We get told that there will be many options at the start yet when it gets down to the wire just the two, so much for all these various trials and studies at various different Hospital Trusts, like one at Surrey. Looking at the CQC for Brighton it inspires little confidence however the consultant seems very sincere about my needs. https://www.cqc.org.uk/provider/RXH

I was under the impression maybe incorrectly that surgery was either all or affected parts.
Considering I was classed as 3+3 and at 5% from the last biopsy only four years ago, and its supposed to be a slow cancer, even with this comment "significantly different" after seeing the MIR whatever thats supposed to mean, I thought only the affected parts get removed, by surgery or zapped by some kind of less invasive treatment.

Someome spoke to me about he had seeds five years ago and has been fine since, although again isnt that some kind of radioactive material too?

Just seems a lot to read, hear and listen to all the advice but possibly after what they find this time round not really going to be much of a choice. Would HiFu that sounds much better, be worth spending on as a treatment?
http://www.cancerresearchuk.org/about-cancer/prostate-cancer/treatment/other-treatments/high-intensity-focal-ultrasound-hifu It is also in the Private Patients list of the hospital https://www.bsuh.nhs.uk/your-visit/private-patients/

The part surgery option was in here;
Transurethral resection of the prostate (TURP)
TURP involves removing part of the prostate gland, generally using a tube that passes through the urethra.

NHS Choices refers to all these;
Radical prostatectomy
Radiotherapy
Brachytherapy
Hormone therapy
Trans-urethral resection of the prostate (TURP)
High intensity focused ultrasound (HIFU)
Cryotherapy
http://www.nhs.uk/conditions/cancer-of-the-prostate/pages/treatment.aspx

Still all this is still overwhelming really.

Edited by member 04 Jul 2017 at 19:42 | Reason: Not specified

Eat healthily, take regular exercise and keep positive.

See my profile for PSA & my archived thread too.

User

Posted 04 Jul 2017 at 20:04

You are running before you can walk and unfortunately, a little information can cause misunderstandings.

A TURP is not a curative treatment for prostate cancer, it is a boring out so that men who have problems weeing (possibly because the tumour is blocking the urethra) can pass water.

Hormone treatment is used for men who are incurable OR to support radiotherapy.

Best thing you can do is order the toolkit from prostate cancer UK and then wait until all your results are in.

Edited by member 07 Aug 2017 at 15:23 | Reason: Not specified

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

User

Posted 04 Jul 2017 at 22:32

Sometimes an oncologist considers it is helpful to augment HT Brachytherapy, be it seeds or high dose, with some fractions of external beam so you will need to know this if Brachytherapy is chosen.

There is also another way of delivering RT and that is by Cyberknife but again it is not usually given as an initial radical treatment within the NHS.

If you are not happy with what you are offered or wish to discus further options, a second opinion could prove helpful.

Barry

User

Posted 05 Jul 2017 at 10:16

I am due my follow up with the consultant in a couple of weeks so I await the prognosis from a medical perspective but at the moment am VERY pleased I took the RP option.

I hope this helps in some way .......

User

Posted 13 Jul 2017 at 10:13

Well time to update, had that targetted biopsy on Tuesday, with catheter out straight away, and manging without that fortunately except some discomfort & dribbling. Otherwise far better than I thought and again far better than the pains I had after the first one some 4 years ago (Its in my profile notes).
Its now hoping to get back to work Friday to earn some money again, then await news of the results, and from when I first woke I was given a brief look at the chart with X marks on a plan of the 30 samples taken, which looked like more one side than the other. Unless I was mistaken being groggy the pen colours looked different one side to the other too.

Apt with consultant is back to RSCH about 4 weeks time having the results back about 2 weeks for the team to discuss.
Wife looking for HiFu as concerned about surgery or radiotherapy options.
Im sort of open minded about everything because until we know comparative details for new Gleason score and where if anywhere it has increased to we cant move forward. If in fact its just grown in size or the tiny cancer first detected had.

Eat healthily, take regular exercise and keep positive.

See my profile for PSA & my archived thread too.

User

Posted 13 Jul 2017 at 11:35

Barry

User

Posted 13 Jul 2017 at 12:32

Thanks Heenan73 for your post.

My wife seems convinced in her mind about HiFu is the best option. I cannot change that.

The Brighton Trust does have it listed if it were a private treatment, and heard about Southampton & local private hospital offers it too.

I dont doubt the consultants offerings or that anything will be hidden, but as of now we need to wait for the results of Tuesday.

Just the 'substantial' word was a wee bit concerning when that wasnt explained enough or like before, talked more about the MRI scan result.

Nothing about PC is really of an urgent nature so we get time to digest and think.

Eat healthily, take regular exercise and keep positive.

See my profile for PSA & my archived thread too.

User

Posted 06 Aug 2017 at 21:45

This is your life RockerG and you now have to control the future.( not the consultants )
I was diagnosed with PC approx 4 years ago by RSCH and 2 years ago was offered RP or radiotherapy
That was all they offered.
A wife of a friend of mine ( who also had PC ) carried out EXTENSIVE research on what to do .
We both had brachytherapy at the Royal Surrey hospital under the supervision of prof X .
We are both fully recovered.
They treat NHS patients and private ( approx £20,000 )
Your wife appears to prefer HiFu. Why spend the money when brachy is available .
Contact the Royal Surrey hospital soon to check on their criteria.
My guess is that your Gleason score has moved from 3+3 to 4+3 or 3+4 . Very common .
Keep in touch .

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