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Gleeson 3+3, PSA 10, RT or Da Vinci

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User

Posted 03 Jun 2016 at 21:22

Just diagnosed today, after tests , MRI scan, Biopsy etc, started in December. So 6 months to get a diagnosis. Is this usual?

Doctor says its contained, and Gleeson score 3+3, affected area is all on the right hand side of prostate.

At Worcester, he said operation would be open, no keyhole, and hospital bed for at least 5 days. So really dont fancy that. Asked about seeing an oncologist, and so he's writing a letter to them for appointment (didnt say how long that would take, but I guess a month).

Just wondering where the nearest robotic surgery is to me, and a good one at that. Howw do I find out?

Option I am thinking about really, is RT. Just a bit worried (isnt everyone) about how bad side effects are. Will I be able to carry on working? Fairly light duties, office / lab work.

Oh, and hi to everyone, hope you all doing well.

toad.

User

Posted 17 Jun 2016 at 21:11

Hi Toad,
I was diagnosed in 2011 aged 55 with PSA 11.25 and, after biopsy, Gleason 4+3. Initial diagnosis suggested the tumour was contained. I opted for the da Vinci treatment on the grounds of age and that I have a very young family (daughter at that time not born and son aged 4 - now daughter 4 and son 7). I and my wife felt it would be better to cut it out and I can say I have no regrets whatsoever. The post-op biopsy showed that the cancer was confined to a tiny tumour of 0.6cc in one lobe with a 0.07cc intrusion into the seminal vesicle thus taking the stage to 3a from 1. That was scary.
The post-operative risk is incontinence and erectile dysfunction and we decided that we could cope with the former if I was a diligent and energetic kegel exerciser and with the latter by using all the help at our disposal - cialis, viagra, pump and lots of love.
After the operation I was up and out of hospital after 3 days and back home. Incontinence was not a problem and I only had a couple of 'events' before settling down and not having any issues at all. The absolute (childish) joy of being able to do a high-velocity pee over about 3 meters was, in itself, one of the greatest feelings after the years of standing for 10 minutes in a public loo waiting for anything to come out and feeling as though people might think you are some kind of pervert:). The ED is another story and needed lots of patience. We have a comfortable and happy relationship and ED has not been a significant issue for us. It takes time.
I have the occasional emotional 'wobble' - most significantly about a year after the operation when I went into a very dark place. With support from the Macmillan nurses at the local hospital and my GP I managed to work my way through it all. Since then I have the occasional freak out when I am feeling achy or tired but now, at the age of 60, I think I can expect aches, pains and tiredness especially with a young and demanding family. I am now down to one PSA review a year. I dealt with that transition myself because the doc must have decided he didn't need to keep reminding me!! The last one was in December 2015 and the result was undetectable at <0.01.
I was told sometime soon after the operation that I was 'to all intents and purposes' cured. I didn't really believe it and I would really rather not. Cancer is a life changer and it's best to remember that lifestyle changes are needed. If you start to get slack on that front you never know what will happen and it's best to stick with the changes you make to your life.
Get everything you can out of your life. Remember how precious every little detail is but don't stop living to the full. Good luck. Geraint

Edited by member 17 Jun 2016 at 21:15 | Reason: Not specified

User

Posted 05 Jun 2016 at 15:02

Hi Davi1,

Appreciate you are wanting to be helpful but one of the few rules of this forum is that you must not name any of your medical team.

Hello Toad,

Sometimes you have to get your GP to refer you elsewhere and in other cases your original hospital will arrange a referral for you. (I have experienced both routes).

As regards surgery, robotic does result in a shorter stay in hospital and less external scarring, though whatever method is used surgical removal of the prostate is a major op which takes quite a few weeks to recover from. The results of robotic and open are similar and some surgeons prefer the greater feel of the open. The experience and skill of the surgeon makes more difference than the way the prostate is removed.

Whatever you decide by way of treatment I hope it goes well.

Barry

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User

Posted 04 Jun 2016 at 12:52

Hi TofTH

has anyone actually sat down and gone through all the possible options with you?, I would hope that 6 months to diagnosis is because the medical team felt with a low Gleason, not too dramatic a starting PSA, scans and other tests showing everything is contained on one side of the prostate, that things were not urgent.

You may want to download the toolkit from this website which has a wealth of information in it including all the options, the potential side effects etc.

If your GP or hospital team are not very forthcoming you could also try talking with one of the nurses on this site, the number is on the home page but they only work weekdays.

The oncologist may suggest RT or Brachatherapy, the Urologist may suggest surgery or HT they may retest your PSA and if it is still at 10 they might even suggest active surveillance for a short while to see if a decision or treatment can be deferred. They do tend to be a little biased towards their own speciality.

This is a massive decision for you and one that only you can make, so get as much info as you can and take some time to consider the options. Once you make that decision go for it and do not look back.

There will be others who will post and can give you their personal experiences so read some of their profiles as they will give you an indication of what to expect from all aspects.

Best wishes

User

Posted 04 Jun 2016 at 14:01

Hi toad, I have had RT at Worcester and it is straight forward, don't know who you will see but my oncologist is a woman and is absolutely great.

I was not offered a prostectomy as my prostate is too close to my rectum wall so the only treatment offered was HT (2 years) and RT (37 fractions).

From seeing GP Dec 2014,having blood test (PSA 63, Gleason 3+4=7, T2) having MRI and bone scan, a template biopsy,to seeing urologist first and being diagnose PCa in Feb 2015, started HT straight away and through unforseeable circumstances RT started September 2015(PSA 0.1 at start) ended Nov 2015. it may be possible to have brachytherapy but not sure if Worcester NHS do it and not sure if it is applicable but may be worth asking about./p>

I can only suggest that you telephone each specialists secretary and harass for dates etc as waiting for the cumbersome NHS to call you in is a long waiting game so be proactive

Best wishes with the treatment and if there are anymore questions feel free to ask away as there will always be someone that can help you with an answer.

Have you downloaded the toolkit from publications or tel to get one sent. You cam also call the number on the site to speak to a specialist nurse who will be able to explain any of your queries.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 04 Jun 2016 at 14:04 | Reason: Not specified

User

Posted 04 Jun 2016 at 14:30

Hello Toad,

I finished RT in January 15, after 37 fractions which covered a nine week period including Christmas and new year. I was able to work for 7 of the 9 weeks mornings only and requested my sessions ( fractions ) for the afternoon. I thought that being able to work would be beneficial for me as a structure to the week and also to take my mind off the concerns of PCa. Being active and with people is good.

I coped well but eventually the build up of fatigue caught up with me and I was signed off work for 2 months . I returned to work initially on a 10 week phased return, gradually increasing my hours. My employers were fantastic and gave me every possible support. I am still on HT and it is this which is possibly the more draining of the treatment I have had. The RT side effect of fatigue wore off about 6 weeks after I finished.

Not everyone has fatigue and many continue to work full time through treatment. My employers though were keen for me to recuperate and take time off.

I have no complaints at all about my treatment. Surgery was not an option for me due to local spread amd even if it had been I'm not sure I would have chosen that route.

Wishing you well,

John

User

Posted 04 Jun 2016 at 15:00

Only you can decide what is the right procedure for you. I was 10.3 on diagnosis, all supposedly contained. I had robotic surgery which worked for a while, then radiotherapy which worked for a while and now on hormones which are slowing the inevitable. If I had to do it all over again, I would do nothing differently except take much less time prevaricating over the decision. By all means arm yourself with information but strike while the iron's hot. This demon could be getting on with its evil business miscroscopically. My advice would err towards robotic surgery rather than frying your prostate. You will get many opinions to the contrary. It is a tough call but making a cancer treatment decision was never supposed to be easy nor is it an exact science.

I wish you well brother. Keep us all informed on here. We are here to help, sometimes confuse, but will always support you.

Bazza

Edited by member 04 Jun 2016 at 15:34 | Reason: Not specified

User

Posted 04 Jun 2016 at 18:00

thanking you all for the replies. Its been a long time since the beginning of the test to being told you have cancer, but its still a bit of a shock when told. I didnt know about a toolkit, I will have a look and get that.

The delay wouldnt have been due to the Gleason being 3+3 as I only had the biopsy last month.

Of my options, If I had surgery, I would like robotic surgery. As Worcester doesnt do this, do I have the option of requesting to be sent to another hospital for the surgery, or do I now have to stay at Worcester.

Worcester recently acquired a new radiotherapy department, so should have some of the latest equipment i would guess. I will find out when i get to see someone from the department.

Its really good to find a site like this, I feel less alone. Thank you.

User

Posted 04 Jun 2016 at 20:26

My friend, the only way to ensure the best treatment is to scream and shout and insist on where you want your treatment. You can have it wherever you want. Research which hospitals offer robotic (I had mine in London) then research the surgeons. When you've done that, insist that your GP refers you to that surgeon and make friends with their secretary. It's only by being assertive that you will avoid the postcode lottery that many, because they just put up and shut up, receive. It's your body, it's your life. Make sure you do yourself proud.

Bazza

Edited by member 04 Jun 2016 at 21:55 | Reason: Not specified

User

Posted 04 Jun 2016 at 21:28

Toad, just so you know, the new radiotherapy/ oncology centre at Worcester is absolutely first class and all the staff are great, considerate and very good at their job from the receptionists to the specialists.

Choose wisely but the decision will be yours and yours alone.

Take someone with you to your appointments and/or take a notepad and pen to ask/record information. Two pairs of ears are better than one as it is so easy to miss or not even hear what is being told to you and the information can be a bit mind blowing.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 04 Jun 2016 at 22:09

Hi Toad,

Firstly well done for finding this site and posting.

You are lucky , Gleason 3+3 contained within the prostrate is treatable and the likely outcome is good

I think 6 months for a prognosis is quite acceptable.

Active surveillance is certainly an option providing you have regular ( every 12-18 month ) MRI scans & biopsies to see how the cancer is progressing.

Bazzas advice is excellent.

You would appear to have all options open to you.

Be careful though , oncologists appear to only recommend treatment available at their own hospital.

I was in a similar situation to you. After considerable research I found that the predicted after effects ( erection etc ) were least with brachytherapy.

Low dose seed brachytherapy is the most expensive procedure commonly available but is available on the NHS.

I had brachytherapy in 2015 and I was only in hospital one day and have virtually no after effects.

I will be watching this space.

Good luck.

User

Posted 04 Jun 2016 at 23:07

Hi Toad..

If you opt for operate and want robotic... Queen Elizabeth in Birmingham does that... only a short trip up the M5 from Worcester!

Also has one of the top guys in the country as Consultant Surgeon...

User

Posted 05 Jun 2016 at 08:01

Hi
Totally agree with Bazza...its cancer so not something that should be left for too long. As others have said download the toolkit and research the different treatments. You do need to be proactive....i saw my GP at the end of October...i was dx in November...i saw three surgeons and the oncologist twice and had my prostate removed at the beginning of February. I disagree that 6 months for a dx is acceptable...this is why they have the 2 week referral pathway...with any cancer early intervention could mean more effective treatment.
Many men have been dx with a 3+3 gleason, me included, but then have that upgraded following the op when the pathologist can take a proper look at the prostate

Good luck mate

Bri

Edited by member 05 Jun 2016 at 08:02 | Reason: Not specified

User

Posted 05 Jun 2016 at 08:08

I have no experience of the place but one of the Bristol hospitals did or do Robotic surgery. Back in 2012 they were trialing the Propep live nerve monitoring to spare nerves in conjunction with the da Vinci. Might be worth more investigation or perhaps one of the members knows more.

Thanks Chris

User

Posted 05 Jun 2016 at 08:54

I had robotic surgery at Southmead Hospital, Bristol in 2015 and my brother had it in Cheltenham in 2015 if that is any help.

Kevan

User

Posted 05 Jun 2016 at 10:53

Hi Kevan, I emailed David Gillatt at Bristol, and he kindly replied to my email, but moved to Sydney as professor of robotic surgery. He recommended his colleague at Bristol, you may have had either of these guys. Is the surgery there nerve sparing?

Asked for a toolkit, downloaded all the pdfs, working through them.

Haven't seen a GP since last august, do I have to get a referral through GP, or hospital?

Having a look at Birmingham hospital, but how do you research consultants?

Many many thanks again, so many replies this morning, I am overwhelmed.

User

Posted 05 Jun 2016 at 14:04

I had mine done by Mr G [edited by Moderator] in southmead Dec14,a very good department. He did save nerves but still incontinent but Bristol does have one of the best incontinent departments.
I found it very difficult to find information about different surgeons.
Malcolm PS I'm from Herefordshire

Edited by moderator 05 Jun 2016 at 18:36 | Reason: Not specified

User

Posted 05 Jun 2016 at 14:54

My experience was that my GP referred me to Urology at GWH Swindon who work with Southmead in Bristol as far as RALP is concerned. Swindon referred me to the surgeon at Southmead who performed the op. We are not supposed to mention surgeons by name on the site but he is the surgeon who mentors and trains other surgeons in RALP. Very good department.

Kevan

User

Posted 05 Jun 2016 at 15:02

Hi Davi1,

Appreciate you are wanting to be helpful but one of the few rules of this forum is that you must not name any of your medical team.

Hello Toad,

Sometimes you have to get your GP to refer you elsewhere and in other cases your original hospital will arrange a referral for you. (I have experienced both routes).

Whatever you decide by way of treatment I hope it goes well.

Barry

User

Posted 05 Jun 2016 at 20:57

Toad...

I sent you a private message last night... did you read it?

KRO...

User

Posted 05 Jun 2016 at 22:22

I did KRO, had a look, and will see my GP this week (hopefully) and ask about a referral.

I was erring towards RT, but now surgery. Tomorrow, who knows.

User

Posted 06 Jun 2016 at 14:59

Hi there,
I'm another from the Worcester area (Malvern), I've been on Active Surviellance for 3.5 years.
I don't know if you have been put in touch with the specialist nurses at WRI, I have found them to be really helpful when I have had queries. As with most NHS staff they are massively overworked and not always easy to contact. If you do not have their names and contact details you can message me and I will send them.

regards

Alan

User

Posted 07 Jun 2016 at 01:49

Toad, just to be clear - whether or not the op is nerve-sparing depends on you and your diagnostic results NOT the hospital or surgeon. My husband chose open RP because although it meant a slightly longer stay in hospital and longer off work, it was thought to be the best option for him. Some men can't have robotic because of previous abdominal surgery (he had his appendix removed some years ago), heart problems (you get tipped head down feet up in robotic RP which is no good for weak hearts), because of where the prostate is laid, and some other reasons.

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

User

Posted 08 Jun 2016 at 22:49

Urologist did send a letter to the oncology department, and also made an appointment for urine flow measurment. Today I got the letter about the flow measurment, 3 weeks! No idea how long it will be to see oncologist.

Is it possible/ok to get a refferal for a second opinion while waiting for the first one to be made? It might just be quicker or is it just not done.

User

Posted 09 Jun 2016 at 11:13

Hi Paul

If you are looking at the QE in Birmingham contact me and I can give you information if needed.

Roy

User

Posted 09 Jun 2016 at 20:22

QE would be my choice Roy. Any info would be appreciated. Probably best if you send a private message.
Just read your profile, sounds like you been through the mill and back again. Good luck.

User

Posted 15 Jun 2016 at 16:05

Hi,

My choice was to whip out the offending organ. I didn't want open surgery and robotic wasn't offered. I had key hole last year. All well now. Scars not visible unless I really look for then,being hairy helps ( except for my head)

Feel free to check out my profile and good luck in making your final decision.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 15 Jun 2016 at 20:04

Hi Paul

Sent you a message hope you received it

Roy

User

Posted 16 Jun 2016 at 11:18

Hi Roy,

No message received I have sent one to you to see if you get it.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 16 Jun 2016 at 13:58

Hi Paul

The message I sent was to Paul AKA toadoftoadhall, regarding the QE at Birmingham, sorry for the confusion

Roy

User

Posted 16 Jun 2016 at 15:05

Too many Pauls pal.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 16 Jun 2016 at 21:10

Hi Toad,

I was diagnosed Oct last year after having psa tests every 6 months for the last 4/5 years.

I had the choice of RT or surgery, I decided on surgery as I couldn't be arsed with RT (to long), I thought if I was going have the op, I'd have it the summer to take in the sunshine!!

Had an appointment with the surgeon at New Cross Wolverhampton, 10 week waiting list, went in on 31/5 for robotic surgery one night stay, out on the 01/6, a bit sore but not to bad, had the catheter out on Sunday, pretty well dry straight away.

Got to get the results next month, but I can't recommend New Cross highly enough, first class care, can't do enough for you.

Regards

Alan

User

Posted 17 Jun 2016 at 18:49

Sound like things went really well for you Alan. If there were more results like yours reported, I wouldnt be so worried about surgery. Instead I am leaning towards brachytherapy or HIFU,

User

Posted 17 Jun 2016 at 21:11

Edited by member 17 Jun 2016 at 21:15 | Reason: Not specified

User

Posted 17 Jun 2016 at 21:29

Great post Geraint - positive but also realistic. I think the wobble about a year after is quite common.

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

User

Posted 22 Jun 2016 at 11:22

seen oncologist at Worcester hospital.

Start hormone tablets today,

IMRT in September.

Fingers crossed.

User

Posted 22 Jun 2016 at 20:20

reading all the side effects with hormone therapy, putting me off IMRT. Reading the notes that come with doctor, says about 1 in 10 have heart problems/ heart attack! Really 1 in 10. I am a bit of a gambler, but that doesnt look good odds to me. Better off with AS!.

Plus the ED for 6 months and more.

Does Brachytherapy usually come with hormone treatment, or is it just RT.

User

Posted 22 Jun 2016 at 20:42

At 48 yrs old , I was offered 2 yrs HT with Bracchy at 3 months after start , and then 35 RT afterwards. I ended up having to have surgery-my choice being removed. I think we are ALL looking for a treatment that solves the problem and leaves no side effects , but it seems that just isn't possible at all. In some ways I agree with your AS approach , but at the end of the day you may only be putting off the inevitable unless you're lucky.

User

Posted 06 Jul 2016 at 19:27

Up to date, been taking Bicalutamide for 2 weeks, had Zoladex implant today, Will continue the Bicalutamide for another 2 weeks. We will see what the side effects are.
Anyone want to share experience of Zoladex, for first 3 months?

User

Posted 12 Jul 2016 at 15:41

QE in Birmingham isn't doing robotic surgery at the moment & have gone back to 'traditional' methods. I'm awaiting a date for my RP there. Reasons cited are that traditional methods have as good (if not better) results & more operations can be done in a day (so less waiting time).

User

Posted 26 Jul 2016 at 19:36

Hi all,

I have just been diagnosed and waiting for a bone scan, nobody has suggested Cyber Knife surgery, seems to be the way to go, only a few hospitals do it but from what I have found out it is non invasive with hardly any side effects,

best wishes to you all

Paul

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