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Getting reports

User
Posted 16 Jul 2021 at 09:38

Hi 

Bit of a side issue ...I'm 6 months since PSA 28, DRE, MRI, biopsy, bone scan...

I've never received any written reports...just verbal ones..."suspicious prostate" etc 

Is this normal? I'd really like to have a copy of all the reports, even the bone scan image...should I be getting them?

When do I get an oncologist?

User
Posted 16 Jul 2021 at 11:33

Prof 

You sometimes have to ask the hospital, your consultant or hospital doctor to send you copies of all letters sent to your GP. 

You said earlier you had a prescription for Degarelix, what has happened with that.

Surprised you have not already seen an oncologist if you are not suitable or have decided against surgery.

You could get in touch with the PALS service if you feel your treatment is not up to standard.

Added not sure you will get the actual image of the scan, I did get reports but not the image.

Thanks Chris

 

 

Edited by member 16 Jul 2021 at 11:35  | Reason: Comment on image

User
Posted 16 Jul 2021 at 11:45

It is surprising that you have not received anything in writing as I have a folder full of letters etc that have accumulated since I was first diagnosed in April. I get a copy of all letters that Addenbrookes sends to my doctor and the doctor gets copies of letters sent direct to me. I also have online access to my medical record so I can see what the results of my various blood tests are.

 

But, you are based in Wales and I understand that the NHS in Wales is not performing as well as the NHS in the rest of the country.

 

As mentioned by Chris, if it was me I would certainly be contacting the hospital/my doctor to find out why I am not receiving the relevant information

User
Posted 16 Jul 2021 at 12:12

Most GPs now have a patient Access website. On the one I use I had to get "Documents"  added. I could them see all correspondence between Hospital and GP. I also requested my images from the hospital which arrived on CD. MRI scans are not easy to interpret, bone scan is very easy to interpret. 

So probably worth contacting GP to get on to their online system.

Dave

User
Posted 16 Jul 2021 at 22:28
Okay - changes it a bit but it still shouldn't have taken 6 months to get to this stage- it's shocking care and can't be excused by the pandemic ... look how many men have joined this forum after you - all diagnosed and on treatment pathways while you still wait. It is an inexplicable delay.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Jul 2021 at 20:11
Covid and Brexit may be the reason for delays in your particular hospital Trust but in other parts of the country, men seem to be being diagnosed and put on the treatment pathway far quicker so your experience is not universal.

Alternative narrative is if you are part of a trial. It is not routine to have so many scans before starting treatment so as I said before, they either have a really strong suspicion that you have mets OR you have joined a trial.

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

User
Posted 17 Jul 2021 at 23:15
The CT scan or PSMA scan are also looking for mets
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jul 2021 at 11:50

Morning Prof

 

It is a bit quiet in here at the moment, possibly because many of the usual people that comment are on holiday.

 

Re your specific questions, have you considered phoning the Macmillan nurse via this forum and putting your questions to them?

 

It is understandable that you feel down, particularly because there does appear to have been a lack of communication and action by your health authority.That said, you have, I believe, posted that previous scans etc have ruled out the cancer having spread to your bones so it does appear that your prostate cancer is in the relatively early stages and is treatable. An ex-work colleague of mine, who is 78 and who I only realized had prostate cancer a couple of months ago, had, when tested when he was 65, a PSA reading of 38  and a slight spread of cancer cells to his his pelvic bone. He was duly treated and now has yearly PSA tests- which score no higher than 2.

I had a TP biopsy on 04/06/21 so cannot comment on your situation following your Trus biopsy.

On a separate matter, I was surprised yesterday to  be phoned  by a prostate cancer navigator based in Addenbrookes. He discussed my situation, answered questions and said he would phone me again when I next have my   PSA test and chat with the consultant in September. So, as well as being sent loads of paperwork and having a specialist nurse and surgeon assinged to my case I also have a prostate cancer navigator.Just goes to show, I guess, that it does matter where you live for receiving treatment.

User
Posted 24 Jul 2021 at 12:04

I think the MRI is excellent at pinpointing suspicious areas in soft tissue so is the first one generally used. It is also able to pinpoint very small areas which PET scans tend not to be so good at. I personally didn’t have a CT scan until I had to prepare for salvage radiotherapy.

PET scans are still very expensive and the tracer production can be difficult so it is used when the oncologist is looking for cancer which has spread (the bone scan does this too but not for soft tissue).

The cancer lesions have to be a certain size before a PET scan picks them up. 
Do you know if the cancer is well contained within the prostate? 
I stand to be corrected if any of the above is wrong…..

Ido4

User
Posted 05 Aug 2021 at 18:02

It does take time to get through to the hospital, but they eventually answer. We are in the same health board as you. David has had a reasonably good service, try talking to your consultants secretary at the hospital they are usually very helpful. David was able to get an appointment within a week. 
Leila 

 

User
Posted 08 Aug 2021 at 20:59

Have you tried calling your consultants secretary. I’ve found them very supportive & helpful. 

User
Posted 09 Aug 2021 at 08:55
I think the rest of your timeline has been shocking but not sure it is reasonable to expect to have received the CT scan results within a week.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Aug 2021 at 17:48

Good news on CT Scan. 

Now that all information is in, it should be time to come up with a treatment plan. Usually this requires a Multi Disciplinary Team (MDT) to meet. I think you should contact your consultant (or secretary) and find out when this will be and if your case is on the list to be discussed. You shouldn't have to do this, but from past performance by your hospital I think you are going to have to be proactive in getting things done.

 

  

Dave

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User
Posted 16 Jul 2021 at 11:33

Prof 

You sometimes have to ask the hospital, your consultant or hospital doctor to send you copies of all letters sent to your GP. 

You said earlier you had a prescription for Degarelix, what has happened with that.

Surprised you have not already seen an oncologist if you are not suitable or have decided against surgery.

You could get in touch with the PALS service if you feel your treatment is not up to standard.

Added not sure you will get the actual image of the scan, I did get reports but not the image.

Thanks Chris

 

 

Edited by member 16 Jul 2021 at 11:35  | Reason: Comment on image

User
Posted 16 Jul 2021 at 11:43

Hi

Yes still have the prescription sheet and have checked my pharmacy can get it ....within a day!

The scheme is to have a bone scan - done and results negative, so M0!

Got a CT scan on 3rd aug, this I presume is to check for other areas it could've spread...like lymph nodes etc 

If that's not clear then I'm to go on HT then RT later 

If it's not spread, then on to a PSMA PET scan... guessing this is to give a high definition image of the prostate and exactly where the cancer cells are plus another check to see if it's got anywhere else. ..

I'll contact my nurse to ask about getting reports....I did request my medical records from my GP...that's how I saw the MRI letter..."probable T3b"...I shouldn't have to keep requesting my records!

So, still in the golden Zone....i.e. not started treatment, don't know if it's spread.....  trying to enjoy life before.....

 

 

User
Posted 16 Jul 2021 at 11:45

It is surprising that you have not received anything in writing as I have a folder full of letters etc that have accumulated since I was first diagnosed in April. I get a copy of all letters that Addenbrookes sends to my doctor and the doctor gets copies of letters sent direct to me. I also have online access to my medical record so I can see what the results of my various blood tests are.

 

But, you are based in Wales and I understand that the NHS in Wales is not performing as well as the NHS in the rest of the country.

 

As mentioned by Chris, if it was me I would certainly be contacting the hospital/my doctor to find out why I am not receiving the relevant information

User
Posted 16 Jul 2021 at 12:12

Most GPs now have a patient Access website. On the one I use I had to get "Documents"  added. I could them see all correspondence between Hospital and GP. I also requested my images from the hospital which arrived on CD. MRI scans are not easy to interpret, bone scan is very easy to interpret. 

So probably worth contacting GP to get on to their online system.

Dave

User
Posted 16 Jul 2021 at 12:14

Hmm, over by ere in Wales tis a bit different. I do have a my health online but I can only reorder pills....I've written to my nurse and GP today.

Maybe I should write to the hospital too?

Who would I ask?

 

User
Posted 16 Jul 2021 at 12:23

What health board are you with prof ? We’ve found it hard going getting information. 

Leila 

User
Posted 16 Jul 2021 at 12:31

Hywel Dda 

 

 

User
Posted 16 Jul 2021 at 19:05

Either they have a really strong suspicion that you already have mets but they just can't find them OR this is simply the most dreadful care. Totally unacceptable to still have no treatment started 6 months post-diagnosis ... I know that prostate cancer treatment is lagging behind a bit in Wales but that doesn't explain why they are doing nothing.

Have they told you that they strongly suspect mets? If not, I would contact PALS (or the Welsh equivalent) to complain.

Edited by member 16 Jul 2021 at 19:06  | Reason: Not specified

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

User
Posted 16 Jul 2021 at 19:14

Um, a bit of wrong stick, end of grabbing .. 

I had the PSA test 6 months ago.....got my official diagnosis last Wednesday, 7th July. 

In-between were all the other bits. It did take 45 days to see a consultant but the MRI "T3b likely", I got pushed up to P2 and things started to move.... biopsy within 2 weeks.....last weds was the consultation (13mins) for which I had a 3 HR round trip.  Life in the NHS is tough, very tough and it will get worse. At least I'm in the system and have my HT ready to go...... unfortunately, I mustn't start it if we're to have the PSMA PET scan!

I'm slightly relieved that my bone scan is completely negative....just need the CT scan to do the same..... thanks for your concern

 

User
Posted 16 Jul 2021 at 22:28
Okay - changes it a bit but it still shouldn't have taken 6 months to get to this stage- it's shocking care and can't be excused by the pandemic ... look how many men have joined this forum after you - all diagnosed and on treatment pathways while you still wait. It is an inexplicable delay.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jul 2021 at 23:08
Got to agree with Lyn here,

Your timescales for a treatment plan sound shocking

Hopefully your story isn't mine but told i had incurable but treatable Pca 3/6/21 put straight on bica same day had 1st HT two weeks later and after oncologist meeting yesterday starting enza next week...I was in a meeting for almost an hour.I,m a pain in the arse sort of patient(asks a lot of questions).From original diagnosis of a Psa of 107 on May 14th) to a Psa of 129 taken on the 3/6/21 you need to get sorted sooner rather than later !

User
Posted 17 Jul 2021 at 08:17

Hi 

You are right and it probably goes back to my political rant a few posts back, which I also posted on Facebook..

Eleven years of under funding, Brexit (10% of all NHS staff were EU workers) and now the pandemic....all  have eroded care. I've friends who work in the NHS and it's at breaking point...staff shortages, suicides, sickness...it's not in a good way. I will keep on badgering them but in a nice way.

Looking back...the MRI scan was 11th May, biopsy within 2 weeks, diagnosis within 4 weeks, bone scan two weeks ago...all clear. CT scan just over 2 weeks.

Why they didn't do the CT scan at the same time as the bone scan, I don't know...

I'm willing to go private...the new MRidian system looks good.... MRI scanning as you do the radiotherapy seems good...stronger beam, only 5 treatments...will do more research.

I do have the script for degarelix...so once I get the green light (or red) I can proceed with treatment. 

No sign of any oncologist yet.... 

Is it worth contacting PALS...

User
Posted 17 Jul 2021 at 20:11
Covid and Brexit may be the reason for delays in your particular hospital Trust but in other parts of the country, men seem to be being diagnosed and put on the treatment pathway far quicker so your experience is not universal.

Alternative narrative is if you are part of a trial. It is not routine to have so many scans before starting treatment so as I said before, they either have a really strong suspicion that you have mets OR you have joined a trial.

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

User
Posted 17 Jul 2021 at 22:48

No trial. No mets....as far as bone scan goes....vamos a ver...

 

User
Posted 17 Jul 2021 at 23:15
The CT scan or PSMA scan are also looking for mets
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jul 2021 at 00:11

Yep but so far so good.....

I'm a bit puzzled as to why not go for the PSMA PET scan straight away?

 Am I right in thinking that the PET scan is a precursor for radiotherapy... pinpointing the location of the cancerous cells? 

I'm tempted to look at the MRidian system of treatment... wondering if this is any better than the standard radiotherapy.

Still feeling incredibly down...it all takes so long... still over a week before my CT scan.....

On a side issue...anyone had any lasting side effects from trus biopsy? I seem to have a lot more wind now....plus more of an urgency to move bowels.....

 

Edited by member 24 Jul 2021 at 08:42  | Reason: Update

User
Posted 24 Jul 2021 at 11:17

Updated the post above...added a few questions...glad for any wisdom...

User
Posted 24 Jul 2021 at 11:50

Morning Prof

 

It is a bit quiet in here at the moment, possibly because many of the usual people that comment are on holiday.

 

Re your specific questions, have you considered phoning the Macmillan nurse via this forum and putting your questions to them?

 

It is understandable that you feel down, particularly because there does appear to have been a lack of communication and action by your health authority.That said, you have, I believe, posted that previous scans etc have ruled out the cancer having spread to your bones so it does appear that your prostate cancer is in the relatively early stages and is treatable. An ex-work colleague of mine, who is 78 and who I only realized had prostate cancer a couple of months ago, had, when tested when he was 65, a PSA reading of 38  and a slight spread of cancer cells to his his pelvic bone. He was duly treated and now has yearly PSA tests- which score no higher than 2.

I had a TP biopsy on 04/06/21 so cannot comment on your situation following your Trus biopsy.

On a separate matter, I was surprised yesterday to  be phoned  by a prostate cancer navigator based in Addenbrookes. He discussed my situation, answered questions and said he would phone me again when I next have my   PSA test and chat with the consultant in September. So, as well as being sent loads of paperwork and having a specialist nurse and surgeon assinged to my case I also have a prostate cancer navigator.Just goes to show, I guess, that it does matter where you live for receiving treatment.

User
Posted 24 Jul 2021 at 12:04

I think the MRI is excellent at pinpointing suspicious areas in soft tissue so is the first one generally used. It is also able to pinpoint very small areas which PET scans tend not to be so good at. I personally didn’t have a CT scan until I had to prepare for salvage radiotherapy.

PET scans are still very expensive and the tracer production can be difficult so it is used when the oncologist is looking for cancer which has spread (the bone scan does this too but not for soft tissue).

The cancer lesions have to be a certain size before a PET scan picks them up. 
Do you know if the cancer is well contained within the prostate? 
I stand to be corrected if any of the above is wrong…..

Ido4

User
Posted 24 Jul 2021 at 12:25
I would say you are right in what you say Ido4. The PSMA scan can also replace the usual bone scan and in due course it may well become used earlier in the UK as is the case in Australia for example.
Barry
User
Posted 24 Jul 2021 at 13:27

Hi 

Thanks for the replies. It's good to know there's friendly folk out there ..

They reckon with 13/16 cores taken, the prostate is pretty full of cancer and may have spread beyond the capsule... seminal vesicles...I'm not sure where the targeted area was...but it scored 3/3.

So, story so far is that it hasn't spread but likely to. It's aggressive and I'm High Risk but things are chaotic and very slow here.

The MRidian radiotherapy looks good but will be around £32k. But they'll still want me on HT for a few months first I guess....

 

User
Posted 04 Aug 2021 at 10:39

Hi 

Had my CT scan yesterday.

Took 2 minutes!

Zoomed in and out of the doughnut 3 times, third time the iodine dye was automatically injected.   Then out and home . Weird.

 So back to waiting game....

What are the chances of being referred to a hospital that does MRidian treatment?

 

User
Posted 04 Aug 2021 at 10:46

CT scans are very quick unlike MRI and PET which take a while. All the best.

Ido4

User
Posted 04 Aug 2021 at 10:48

Yep but 2 mins!

And how many more mSv?

Glowing...

User
Posted 05 Aug 2021 at 10:32

Still feeling very low....just waiting for the CT scan results....can't get thru to the hospital. Relying on my key worker, whom I've emailed....

I have to agree with others that it is all taking too long but what can I do? 

User
Posted 05 Aug 2021 at 12:07

Well, If you can't get through to the hospital and feel that your case has not been progressed fast enough what about contacting your M.P.?

User
Posted 05 Aug 2021 at 12:57
Before going to your MP, try the PALS at the relevant hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Aug 2021 at 13:02

No PALS in Wales

But I'll try their complaints

 

User
Posted 05 Aug 2021 at 18:02

It does take time to get through to the hospital, but they eventually answer. We are in the same health board as you. David has had a reasonably good service, try talking to your consultants secretary at the hospital they are usually very helpful. David was able to get an appointment within a week. 
Leila 

 

User
Posted 08 Aug 2021 at 18:55

Key worker on leave...his colleagues said...no results in yet...

So...waiting goes on...

I'm really dying to see an oncologist...

(Latest joke)

But seriously, not got one....

User
Posted 08 Aug 2021 at 20:59

Have you tried calling your consultants secretary. I’ve found them very supportive & helpful. 

User
Posted 09 Aug 2021 at 08:48

Before compiling a complaint could I ask folk on here to give me their, or others they know if, experiences of timescale?

My experience is 

Dec 2020 request prostate help...peak Covid so no.

Feb routine blood test PSA test of 28.

45 days to see urologist - DRE.

2 weeks to get MRI

2 weeks to get trus biopsy.

4 weeks to get results, 13 min meeting with urologist and no one else... Gleason 4+4=8, confirmed T3b, high volume, high risk.

Bone scan.

4 weeks to get CT scan.

1 week...waiting for results...

 

 

 

 

User
Posted 09 Aug 2021 at 08:55
I think the rest of your timeline has been shocking but not sure it is reasonable to expect to have received the CT scan results within a week.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Aug 2021 at 09:02

Hi, yes I guess so.

The girls doing the scan said they process 40 patients a day!

So, I guess that requires 40 reports too!

I'll wait n see....

User
Posted 09 Aug 2021 at 17:15

Hurrah.

CT scan results in.

All clear.

So on to the PSMA PET scan...

 

User
Posted 09 Aug 2021 at 17:26

Excellent news, prof

User
Posted 09 Aug 2021 at 17:48

Good news on CT Scan. 

Now that all information is in, it should be time to come up with a treatment plan. Usually this requires a Multi Disciplinary Team (MDT) to meet. I think you should contact your consultant (or secretary) and find out when this will be and if your case is on the list to be discussed. You shouldn't have to do this, but from past performance by your hospital I think you are going to have to be proactive in getting things done.

 

  

Dave

User
Posted 09 Aug 2021 at 17:53

Not quite.

As I've said previously, the plan always was bone - CT - PSMA PET scans.

So it's on to the PSMA PET scan in singleton, Swansea in a few weeks.

HT and RT after that.

 

 

 
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