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Decisions ... decisions

User
Posted 07 Jun 2018 at 20:35

Folks, at the end of the tests & procedures; it's make my mind up time.

Work medical in 2016 indicated PSA to be "of concern" (no number given) & I should see my GP.  As a typical man, did nothing until being made redundant in October 2017, therefore missed the firm's annual medical, so no chance for another measurement. In March 2018 decided finally to see my GP about the 2016 result & then the process kicked-off.  GP DRE - nothing significant, gland big but not knobbly; blood test - PSA 7.25; MRI scan - some dark areas; template biopsy - Gleason score 4+3; bone scan - clear; cystoscopy - nothing in bladder, constriction on urethra caused by swollen prostrate evident.  Have had urinary problems for two to three years - frequency when vertical: no particular overnight problems, but have to pee frequently (often had to stop on the drive to work, or pee more frequently than the dog when out for a walk - no tree is safe!).

So I am being offered two courses of treatment & have to choose between them:

1. Radical prostatectomy - robot, keyhole.  Have seen the surgeon to have the description.  It was he who asked for the cystoscopy to check that there are no additional problems with the bladder.  This seems a "safe" option in the sense that removal of the gland removes the problem.  I am primarily concerned that the side effects will worsen my existing urinary problems, plus all the other ones on top of that (ED).  The surgeon has indicated that it is possible that nerve damage would be minimised because the cancer is concentrated to one side of the gland.

2. Brachytherapy - permanent seed.  Have had the consultation to explain, along with a pee test, further DRE & ultrasound to size the gland.  Also proposed as part of the treatment are hormones for three months to shrink the tumour a bit & a TURP before the seed implantation to improve the peeing problem (?).

To sum up: both treatments should be effective regarding the cancer.  However, I guess neither comes with a 100% guarantee.

Surgery seems a reasonable option, with a "once & for all" air about it, but with more extensive recovery & worse side effects (plenty of experience out there in this excellent community to at least have reservations about it).

Brachy seems to give me the impression (maybe undeservedly) to be too good to be true: less intrusive, short recovery, lesser side effects, ... the golden bullet!  I may have missed it (& apologies if I have), but I can't seem to find any experience of  brachy (plus the TURP) in the community: can anyone help, please?

User
Posted 07 Jun 2018 at 23:38

Originally Posted by: Online Community Member

.........................  However, I guess neither comes with a 100% guarantee.

 

 

Never a truer word so surgery not necessaryily a one and only treatment needed

 

Your treatment decision is one than only you can make bearing in mind your individual diagnosis and cicumstances.  Your consultants opinions should be taken into account as they know your case best and are qualified to give an opinion.  You may find it helpful to obtain a copy of the 'Toolkit' available from the publications section of this Charity as a hard copy or you can download, if you have not already got this.

 

Barry
User
Posted 07 Jun 2018 at 23:50
If my OH had been given the choice, brachytherapy would have been first choice. He was refused brachy for being ‘too young’ and went for surgery which then failed. My dad had surgery 18 years ago and although he was left with long term ED he was clear of cancer for 13 years so it was the right choice for him. Everyone is different.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jun 2018 at 20:22
Thanks Barry & Lyn, I've got the toolkit in hard copy & have worked my way through most if it. The information is very good and balanced. You are right that everyone is different: it's an individual choice, but very difficult. I'm leaning towards the brachy. It would be good to hear some long-term experience of it.

User
Posted 08 Jun 2018 at 21:58
Johsan should be along at some point - her OH has a good news story - and we have a couple of others that have had brachy very recently.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jun 2018 at 11:04
I wonder if you have sought an opinion of the leading urologist at Guildford, who is mentioned in an article in the Press this week. You should be able to get a second opinion there if you haven’t seen him already.

A wealthy friend with Gleason 3+3=6 has had five private opinions here and abroad, including four more with the chap mentioned in the paper. He has been variously advised: surgery, brachytherapy and watchful waiting. He has gone for the latter for now.

http://www.dailymail.co.uk/health/article-5808997/Meet-best-urologists-Britain.html%C3%82%C2%A0

User
Posted 09 Jun 2018 at 19:43
Everning Phil,

Brachy does seem like a no brainer.

The side effects of surgery are all "potential". And, I agree, a cause for concern.

Regarding incidences of surgery having "failed", as far as I understand it, surgery is only effective if the cancer is contained. Unfortunately some opt for surgery in the mistaken belief from what they are told by experts and what they have seen, that their cancer is contained and then on pathology it is found not to have been. So surgery has not failed, perhaps more accurately, it was the wrong choice made in god faith?

Looking back, maybe, I wish I had had the courage to take a chance on Brachytherapy? But, as I said til myself then and offer to others now, you have one chance to make one choice, so consult wisely, not too widely, then go for it, and don't look back.

Maybe worth finding out what back ups are on or off the table iff a particular choice does not work out? Maybe worth having a Plan B, just in case? I did.

atb to you whatever you chose.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 05 Aug 2018 at 10:26
Thanks to all who have responded & your supportive messages. I've been off-grid for a couple of months in the lead-up to our daughter's wedding. All went well: managed through the ceremony, reception & evening do without any peeing problems. That was a great relief. Consequently, haven't had time to even think about it for a while. Things are ramping up now, so the reality is kicking back in again.

To update: initial reaction on diagnosis was "whip it out" & no drugs. But reflected, talked to two close friends both of whom had faced this, but were more advanced & therefore their options were more limited, with very strong hints from their physicians what route they should take. One elected for radiotherapy (not brachy, or remote beam, something else), the other prostatectomy (with relatively minor, manageable side effects). It's good to talk openly about this though, with good friends & through forums such as this; men are pretty bad at having these conversations - a documented fact! What has struck me is how prevalent the awareness has become (or maybe I'm just noticing it). Fro example, I was at the Tangmere RAF museum a little while ago & no urinal, wash basin, or hand drier was free from articles & notices about prostate cancer - good on them!

I've settled on the brachy. Just now, i'm two-thirds the way through a three-month course of hormone pills (Bicalutamide & Tamoxifen), waiting for appointments for the TURP & subsequently for the brachy. To my surprise, the effects of the pills were less serious than I thought they might be (maybe the injections are higher dosage & therefore more serious in their consequences), so that's a bonus.

I think Dave's advice about is sound: go for it & don't look back. Deal with what's in front of you, not vex about what's in the past.

So here we go ...

User
Posted 05 Aug 2018 at 14:19
I wonder if you ever did see the eminent Professor of Urology at The Royal Surrey County Hospital? I am very pleased with my RP and subsequent recovery from surgery.

I would be interested to hear how you have got on with any side effects of your hormone treatment, as I may end up on that road if my PSA increases (currently undetectable 😁😁😁).

Best of luck for the future.

Cheers, John

User
Posted 06 Aug 2018 at 10:12

Hi Phil,

I had a choice of full radical surgery & Brachytherapy with a PSA 2.19 & Gleason 3+4=7,both the specialists thought theirs was the best so I came to this site for support and ideas of other peoples side affects.Of course no procedure for PC can be guaranteed  100% or can side affects and complications so I can only give you my side of the outcome.

I am 22 months on from Brachytherapy  after a good procedure  at Mount Vernon with one night in operation the next day and release the next day with some discomfort and a few pain killers.

My PSA test was every three months up till June 2016 and six months since.PSA is down to 0.39 in June 2017 and next test in January 2019 with my Oncology nurse.(I don't see the specialist any more at the moment.

If you click on my Avatar you can see my journey so far.

 

John.

 

 

User
Posted 06 Aug 2018 at 13:51

Useful to hear other experiences as I am just at the decision point. My options are surgery (radical prostatectomy), hormone therapy + radiotherapy, and temporary brachytherapy. I would be interested to hear of anyone who has been through the hormone + radiotherapy route and any side effects of these. Although not wild about invasive surgery, I have never been in hospital, I am concerned about the long term effects of hormone and radiotherapy treatments.

User
Posted 06 Aug 2018 at 14:59
Thanks Johns.

Bollinge - no I didn't. The surgeon that gave me the RP briefing, whilst I had the two options in my hand, was not the one named in the Daily Mail article, who was PROFESSOR CHRIS EDEN. I may have missed Prof. Eden, but I didn't come across his name. I did quiz my prospective surgeon on his track record; then looked in the following: https://www.baus.org.uk/default.aspx (baus = British Association of Urological Surgeons) & tried to find the surgeon who briefed me; he was not listed in the baus "Patients Find a Surgeon" database at that time. That may be for any number of reasons (including my own incompetence!), but I did find it a bit disquieting at the time. I've looked today & he's there now, so maybe I'm doing him a complete disservice. I don't doubt that RP would have been handled extremely well by whoever in that team.

My hormone treatment is short-term specifically directed at shrinking the tumour prior to brachy, having decided on that route, so I'm not sure how relevant it may to you. That may depend on the dosages they may give you & the duration they give it for. Not to be too explicit about these things, the treatment has had some effects, but the world hasn't ended completely -- yet!!

--theprint - your journey & decision-making seems very similar to my own, so that's been very useful & I can follow you to see what's down the line! In the end I decided which procedure to adopt based on the relative side effects, so opted for the brachy.

User
Posted 06 Aug 2018 at 15:03

Hi David, I've had my hormone (bicalutamide injection) therapy and radiotherapy this year.

For me radiotherapy gave me virtually no side effects, except extra tiredness for a couple of hours in the afternoon of my lunchtime sessions.

With the hormones, I had what seems the standard fatigue, hot flushes and putting a bit of weight on, plus stiff fingers (which is unusual )

It's now 7 months since my last hormone injection, but I've only just got rid of these side effects.

All in all, it's now as if it never happened.

The difficult bit is being patient as we wait for the testosterone to return.

I have my first PSA test in October, and remain very positive all will be well.

Good luck.

User
Posted 06 Aug 2018 at 16:20
Rather looks that you will be going with the Low Dose seed Brachytherapy then Phil which is what most men seem to have rather than the High Dose type David is considering. Either type can, if thought appropriate, be supplemented by EBRT as part of the treatment.

Might be a good idea to start your own thread on side effects of HT + RT rather than introduce to Phil's thread a question on treatment he is not considering.

Barry
User
Posted 07 Aug 2018 at 09:06
Correct Barry. Apologies for not being clear about what my treatment is to be: Low Dose Seed Brachytherapy it is. Bit of a mouthful, so will try to call it LDSBrachy in the future!

Take care all.

User
Posted 09 Aug 2018 at 17:24
Now have a date for the TURP - 29th August. Add six weeks for the Brachy pre-assessment, then a further four weeks until the LDSBrachy itself, takes me to the first week of November.

Slightly irksome thing is that I learnt that the hormone treatment continues for three months AFTER the LDSBrachy, which would be to the first week of February. Having started taking these ornery pills in June, that makes 10 months on them. Much, much longer than I anticipated.

Anyway, progress & targets set, so on we go!

User
Posted 09 Aug 2018 at 18:42
If I were to have to undergo a trans-urethral prostactectomy, and then subsequent treatment for persistent cancer, I would opt for a radical prostatectomy for a potentially ‘once and for all’ solution.

My friend had a TURP a few weeks ago involving some kind of “green laser” therapy, and he was in hospital overnight, but his continence and erectile function are back to normal. But he didn’t have cancer.

I could have left hospital the day after my prostatectomy if I didn’t live so far away from the centre of excellence that is the Royal Surrey, Professor E, and his team.

Best of luck, anyway.

Cheers, John

User
Posted 03 Sep 2018 at 09:41

An update. That's the TURP over & done with -- last Wednesday. Performed by the top man -- Prof [name removed by moderator] & excellent team at GSCH. All went well, apparently. Back home after a bit of an extended stay in the recovery ward post-op & getting discharged on the Thursday late afternoon.

Given laxatives & painkillers, am using the former whether or not really required, but haven't felt the need for the latter. Have felt tired & tried to take it easy, physically, but not entirely sure what can be done & what not -- no straining I guess. Walk the dogs, OK, mow the grass, not OK? Any post-TURP advice from the experienced out there, gratefully received.

Immediate post-op stuff centres around worse incontinence than before the TURP. Up three time in the night last night (that's a first for any time) & retention are immediate issues. I guess this will improve with time? Should I be doing pelvic floor muscle exercises, or does this constitute straining? Neglected to ask about this.

In the general scheme of things, dates now set for the LDSBrachy pre-assessment & the LDSBrachy itself, so all moving forward towards what is hoped is a positive conclusion.

Good luck to all in similar, or the same, boats!

Edited by moderator 03 Sep 2018 at 13:16  | Reason: Not specified

User
Posted 07 Nov 2018 at 21:55
A further update. That's the LDSBrachy over & done with -- last Friday 2nd November, brought forward by a couple of weeks from the 26th. Before my treatment, I had a long chat with a neighbour who had been the same process a few weeks earlier; this was very reassuring, It never ceases to amaze me how many men you know suffer with this problem. I guess it's inevitable given how common the disease is.

Last Friday crept up on me, but I was amazed how smooth & trouble-free it was. I was in the hospital at 7:00am, first on the list & was home again by 2:30pm the same day. I cannot speak too highly of all the hospital staff involved After the two previous visits involving a general anaesthetic (biopsy & TURP), I was surprised to get off my bed & walk from the anaesthetic room to the treatment room, lie down & assume the position before conking out. Job started at 8:00am & I was awake again around 9:00am.

Discharged with what seemed like a shed load of pills: antibiotics, Contiflo, Ibuprofen, Senna, in addition to the ongoing hormone stuff. I'm surprised I'm not rattling! So far I feel OK, but have seemed to be tired & lacking a bit in energy, but time will tell.

The admin side of things has swung into action very efficiently. I've already received my questionnaire on the full process of cancer diagnosis & treatment, plus the first follow-up consultation has been arranged. All of this is excellent & I continue to feel that I'm in very good hands.

Let's see how this progresses!

User
Posted 07 Nov 2018 at 21:59
****Sorry, correction: brought forward from the 16th****
User
Posted 07 Nov 2018 at 22:45

Thanks for the update. It sounds like things went very smoothly.

I hope things go well for you.

Keep us posted.

Ian

Ido4

User
Posted 06 Feb 2019 at 10:33
An update, approximately three months after the LDSBrachy. Has to be said that the waterworks & number two's have been far from ideal; otherwise I feel fine. I have my little card to show to others I'm slightly radioactive & to explain how I might set off the metal detectors at airports (not done that yet!).

Following a blood test & completion of the standard multiple choice form for urinary & other symptoms, had my three-month telephone consultation with the brachytherapy team nurse consultant on Monday. Some good news:

1. PSA down from 3.7-odd to 0.11.

2. I can come off the Bicalutamide (hormone pills) immediately, but remain on the Tamoxifen (other hormone pills) for a month until the Bicalutamide works its way out of my system.

3. The reasons for the urinary symptoms (urgency, frequency & what's called the "latchkey" effect), along with the poo issues, were very well explained to me, are typical for this stage of proceedings & should improve with time.

4. Advised to double up on the Tamsulosin (morning & evening as opposed to just morning) to see if this helps with the urinary problems in the short term.

5. Some dietary steps were advised for the pooing, along with taking something called "Normacol" (yet to investigate this).

That's it. Can't help feeling that I'm a lucky boy & it's all heading in a positive direction. Thanks to all for your good wishes & let's hope for good outcomes for all affected by this disease.

 
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