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why does it take soooooo long

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User
Posted 21 Oct 2015 at 09:41

Just wondered what the average waiting time was from diagnosis to treatment/surgery.

Had Biopsy and bone scan on the 14th/15th Sept, MRI scan on the 29th Sept. I have an appointment with the consultants on 27th Oct to discuss he way ahead.

PC diagnosed at Gleason score 9 (4+5), aggressive local prostate cancer which is ready to spread beyond prostate. bone scan was clear and MRI scan didn't show up any further spread. This is still to be confirmed though on the 27th as I was jut given a rough guide of the results from the MRI scan.

My concern is the time that it takes from the diagnosis to the actual treatment, I have an idea what treatment I am going for, this being surgery and radiotherapy.

just wondered if everyone else had to spend, what seems like a lifetime, for treatment. Was unofficially told that it could be next year before this happens, was hoping to be in and out for xmas.

Thanks

Sandy

 

User
Posted 21 Oct 2015 at 10:25

Must admit, I would be inclined to chase it up. With your Gleason score, you dont want the risk of it spreading if this can be prevented. It's often a good idea to be pro-active over treatment, sadly, things sometimes go astray with the NHS. I remember the consultants' secretaries often being a great help moving things forward and passing on messages! Have you been commenced on hormone therapy which is generally the first line of treatment ? Others will no doubt post their feelings, some who will probably have been in the same situation as you.

 

Best wishes, Fiona.

Edited by member 21 Oct 2015 at 10:27  | Reason: Not specified

User
Posted 21 Oct 2015 at 11:18

I think NICE says that from the point that you decide which treatment you are going for, it should be done within 31 days or something like that. So if you choose surgery, your op date should be at the end of November and if you choose radiotherapy as the primary treatment rather than as adjuvant, they would probably start you on the hormone treatment next week.

If the indicator at your appointment is that thye cannot operate until next year I would
a) ask how that fits with the NICE guidelines
b) ask whether a referral to another hospital might get you a quicker op
c) think seriously about whether to go straight for RT/HT

I think I posted on your other thread that it would be useful to know from the surgeon what the benefit is of having surgery and all of its possible side effects and risks if you are going to need RT anyway.

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

User
Posted 26 Oct 2015 at 21:16
Hello Sandy,

I had my biopsy on 24th June and was given the diagnosis on 29th July.Localised PC Gleason 3+3.

I was put on Active Surveillance and told by my Uro-Oncology nurse specialist that I would be contacted by her in three months to have another PSA blood test and then an MRI scan in another 3 months.I have now been told to go ahead and have the blood test and be available on 27th November to discuss the results by phone.

From reading other posts on this forum there does appear to be some difference in the time that each of us is dealt with.

I know that my results so far suggest that my PC my be less urgent than others at this stage,but the waiting is not easy.

I have tried to contact my nurse,but she does not answer her phone,so I emailed her and in return got an invite to a social event with other men locally.

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User
Posted 21 Oct 2015 at 10:25

Must admit, I would be inclined to chase it up. With your Gleason score, you dont want the risk of it spreading if this can be prevented. It's often a good idea to be pro-active over treatment, sadly, things sometimes go astray with the NHS. I remember the consultants' secretaries often being a great help moving things forward and passing on messages! Have you been commenced on hormone therapy which is generally the first line of treatment ? Others will no doubt post their feelings, some who will probably have been in the same situation as you.

 

Best wishes, Fiona.

Edited by member 21 Oct 2015 at 10:27  | Reason: Not specified

User
Posted 21 Oct 2015 at 10:55

Thanks Fiona for replying.

Yeah just worried about any further spread myself, meant to add that my PSA was also high at 32 and the cancer was graded at T3b. I thought that maybe due to the degree of the cancer I would have had something, but no mention of any treatment until I see the consultants.

Spoke to the consultants secretary who couldn't do anything about the timescale, this was due to lack of consultants, holidays etc. I know that there are many guys out there with the same concerns but sometimes you get a wee bit selfish and want things done quickly.

Like I said I am concerned about the time taken from diagnose to treatment, although I keep getting told that it is a slow growing cancer and will not make much difference to my condition.  This doesn't really install confidence.

Anyway off to see the consultants next Tuesday for advice on where to go now, but I have been given some advice from the Urology specialist nurse who recommends surgery followed by radiotherapy.

Apart from not knowing the full outcome it is really hard to plan for anything in the future, but hey ho onwards and upwards.

Cheers

Sandy

User
Posted 21 Oct 2015 at 11:18

I think NICE says that from the point that you decide which treatment you are going for, it should be done within 31 days or something like that. So if you choose surgery, your op date should be at the end of November and if you choose radiotherapy as the primary treatment rather than as adjuvant, they would probably start you on the hormone treatment next week.

If the indicator at your appointment is that thye cannot operate until next year I would
a) ask how that fits with the NICE guidelines
b) ask whether a referral to another hospital might get you a quicker op
c) think seriously about whether to go straight for RT/HT

I think I posted on your other thread that it would be useful to know from the surgeon what the benefit is of having surgery and all of its possible side effects and risks if you are going to need RT anyway.

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

User
Posted 21 Oct 2015 at 22:04

Alternatively you could ask them to start you on HT to hold it at bay particularly if there is going to be a delay in radical treatment

Bri

User
Posted 22 Oct 2015 at 02:22

wow if it is going to be next year think I would be looking at a 2nd opinion, have a word with your GP about one

 

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 22 Oct 2015 at 15:17

Thanks guys

I don't think that I could wait until next year before anything is done, especially when I have been told that it is an aggressive cancer, so if I don't get any satisfaction from the consultants next week then I will indeed look for a second opinion to try and get the ball rolling.

I hope you are correct Lyn with NICE, 31 days after agreeing treatment, as every day that passes you start to wonder what the hell is going on inside your body.

I appreciate that there are guys out there in a similar or worse case scenario but sometimes you become a wee bit selfish and just want something done quickly. 

Thanks to everyone for their input, had a lot of good advise. will keep you all posted on how I get on next week.

Sandy.

 

 

User
Posted 26 Oct 2015 at 21:16
Hello Sandy,

I had my biopsy on 24th June and was given the diagnosis on 29th July.Localised PC Gleason 3+3.

I was put on Active Surveillance and told by my Uro-Oncology nurse specialist that I would be contacted by her in three months to have another PSA blood test and then an MRI scan in another 3 months.I have now been told to go ahead and have the blood test and be available on 27th November to discuss the results by phone.

From reading other posts on this forum there does appear to be some difference in the time that each of us is dealt with.

I know that my results so far suggest that my PC my be less urgent than others at this stage,but the waiting is not easy.

I have tried to contact my nurse,but she does not answer her phone,so I emailed her and in return got an invite to a social event with other men locally.

User
Posted 26 Oct 2015 at 22:30

Perki, your records will indicate that you are on a treatment path (active surveillance) so the waiting times don't apply to you. I am not sure what you are waiting for?

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

User
Posted 27 Oct 2015 at 19:17

Hi LynEyre,
You are right AS is a treatment path,which I did choose .Rather it was pre decided by the hospital team and I was told/encouraged to accept.
At the time having just been given the diagnosis I accepted and will probably continue.
However I am struggling somewhat with waiting for the next blood test etc.
The point I was getting at is that my uro-oncology nurse specialist told me that they would contact me for a blood test after 3 months and they are two months late.This will be my first after diagnosis and does not instill confidence for what may be to come.

User
Posted 27 Oct 2015 at 19:22

That is absolutely shocking and means that they are completely failing to offer you proper active surveillance! NICE says AS requires regular PSA tests with annual DRE and annual scan - my heart sinks for you.

If they are late again the next time, can you not get the PSA test done at your GP practice instead and then just ask GP to send the result to the nurse?

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

User
Posted 27 Oct 2015 at 19:54

Perkij please do as Lyn advises re GP.

My husband was on active surveillance for a while and we would have similar problems contacting or getting a reply from the nurse.

I pushed my other half to get a couple of the PSAs done via the GP because at least you get to know where you stand with those results, without all the hassle and waiting around for the nurse to contact you and you then have up to date info on which to base any pushy follow up calls to nurse or consultant's secretary .

We can't control the winds - but we can adjust our sails
User
Posted 27 Oct 2015 at 21:18

Johsan
Thanks for the advice. I will indeed get my PSA done through my GP.

User
Posted 28 Oct 2015 at 09:46

I have been on AS for 3 years now, and my PSA tests have all been done at the GP's.
I make the appointment with the practice nurse and the results go directly to my consultant, with a copy to the GP so I can easily access the result.
For me it is important to have some control over my treatment. I will always make sure that I check that the AS is being carried out as I think it should be.
I believe hospital appointments are often allocated by a central department who have no clinical expertise, and appointments which they consider low priority may be delayed. Shortly after diagnosis I had a consultant appointment cancelled and rearranged for about 4 months later. When I queried this I was told by an administrator that I was not priority as I was already diagnosed, and the limited appointments available were being allocated to higher priority cases.

User
Posted 28 Oct 2015 at 12:47

Funny how things happen.
After my whinging on here recently about lack of contact from the hospital.
Today I have had a letter with an appointment for MRI.
So now PSA blood test in a couple of weeks and then MRI on 15th November with phone call from uro-oncology nurse on 27th November to discuss results.
Watch this space.

User
Posted 28 Oct 2015 at 12:57
Hi Perkij

Hope all goes well with results.

Sandy

 
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