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SO ANGRY!

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User
Posted 10 Sep 2019 at 09:27

My husband (59) was diagnosed in January with an unusual aggressive locally advanced grade 4 cancer with a Gleeson of 8.    He met with his consultant early February and was started on hormone therapy and told he will be on this and start his aggressive internal brachytherapy and external radiotherapy in September and if you don't hear from us by the end of August ring up to get  your dates.  

We contacted the  hospital early August to see if any dates had been confirmed as we wanted a few days away before treatment but couldn't get a reply so off we went and chased up the appointment last week.   On the third attempt my husband was told that due to problems with the brachy machine, staff shortages and a long waiting list his treatment wouldn't now be until December!!!!   He  started all his tests at the end of October last year and I do feel that he's been failed a bit by the NHS.   When they said he had a tumour in his bladder and needed a TURBT procedure to remove it, the appointment was cancelled twice.   He eventually went in for the procedure on the 8th January and they found the tumour had stemmed from the prostate - hence being diagnosed as locally advanced.  

I cannot begin to tell you how upset and angry we were at receiving the 'December' news that I sent a written complaint to his consultant who was on holiday so I asked her secretary to  forwarded to the brachy consultant, who in turn did ring my husband to apologise.   It was left that she will do her best to try and bring his appointments forward but it might be difficult because he will need a 6 week slot!!    We're currently waiting for her to ring back as she promised to ring back by Wednesday this week with dates.

Surely when my husband was seen early February he should have then been given a block booking for September?   He's classed as aggressive advanced and just wants to start his radio treatment. 

I cannot tell you the emotional affect this has had and at one point after receiving the call on Friday, my husband actually said "maybe i'm too far gone that they've decided not to do the treatment"  which broke my heart for him to think like that as he's been so positive up to now.   He also had a body scan in July to check him over which was 'stable'.

I'm currently on pins waiting for the response on treatment dates to come back.   Can anyone give me advise what I should do.   I've considered going down the PAL's route and someone suggested I contact my local MP!  We don't have private health cover.

 

 

 

User
Posted 11 Sep 2019 at 22:59
Good news. I think a clinical nurse (if not a consultant) could explain to men that starting HT is commencing treatment and providing PSA does not increase before RT begins, this can constrain the cancer and helps shrink tumour to help make RT more successful. Informing men of this early on could help allay much of the concern a man and his family experience over what they perceive as being wasted time.
Barry
User
Posted 10 Sep 2019 at 21:56

Thanks Peter.

Sunny Girl,

Like Peter said, the extended time on HT could be a good thing, but while you are on HT, get a PSA test done every 3 months. If this hasn't happened, get next two tests done a month or less apart so you can quickly see how it's changing and in which direction. You can get the PSA test done by your GP.

Ideally, you want to get your PSA < 0.1 at commencement of RT, but you don't want to delay if it's not falling quickly, or you risk waiting too long and the cancer starting to become castrate-resistant (able to ignore the HT). Not everyone will be able to get the PSA that low. You probably don't want to wait any longer than you have now, but the wait you've already had isn't necessarily wasted - it might be a good thing. You may be at the ideal PSA level just about now (it took me about 5 months).

If your hospital can't treat you due to lack of resources, I think you need to get your GP to refer you somewhere else. I don't know the mechanism to do this, but someone else here might.

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User
Posted 10 Sep 2019 at 20:56
He is on hormone treatment which will be controlling and critically injuring the cancer cells; modern thinking is that the longer he has HT before the RT/brachy the better the outcome so although it has caused you undue stress and messed up your holiday plans, the delay won't be doing him any harm. It doesn't give you confidence in the Trust that will be treating him though, will it!

Technically, there are no guidelines or timescales that you could use as the basis of a complaint. The target is to start treatment within 31 days of diagnosis but they met that the day they started his hormones.

I don't think private health would necessarily have helped in this case.

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

User
Posted 10 Sep 2019 at 21:35

Hi, 

There is a member called Andy62 who has written quite a bit on hormone treatment before radiotherapy.   He concluded that monitoring your psa until it declines to below 0.1 is the best time to start.  There is also a long piece about Brachy treatment that Andy62 wrote on and I'm not sure if he wrote it.  I don't recall it being a 6 week exercise unless that includes the Radiotherapy.  If it does then perhaps you could have RT somewhere else as you aren't tied to one hospital.

Have you had psa tests during the year as these could be used to make a case for starting treatment.

It's disappointing that you are based in Manchester as people such as myself living in the north west think that the best treatment is in such a city and Manchester has The Christie.  Although we often read that the number of people with Prostate Cancer needing treatment has increased since the like of Stephen Fry brought it to peoples attention.

All the best, I'd look up some of these articles on here and perhaps ask about treatment elsewhere.  It sounds like your consultant is sympathetic if he rang you so perhaps he'd be willing to help a bit more.

User
Posted 10 Sep 2019 at 21:56

Thanks Peter.

Sunny Girl,

Like Peter said, the extended time on HT could be a good thing, but while you are on HT, get a PSA test done every 3 months. If this hasn't happened, get next two tests done a month or less apart so you can quickly see how it's changing and in which direction. You can get the PSA test done by your GP.

Ideally, you want to get your PSA < 0.1 at commencement of RT, but you don't want to delay if it's not falling quickly, or you risk waiting too long and the cancer starting to become castrate-resistant (able to ignore the HT). Not everyone will be able to get the PSA that low. You probably don't want to wait any longer than you have now, but the wait you've already had isn't necessarily wasted - it might be a good thing. You may be at the ideal PSA level just about now (it took me about 5 months).

If your hospital can't treat you due to lack of resources, I think you need to get your GP to refer you somewhere else. I don't know the mechanism to do this, but someone else here might.

User
Posted 11 Sep 2019 at 08:35

Thanks for all your comments.   My husband received a call yesterday afternoon from the consultant at Christies and they've given him a start date for the 30th September so fingers crossed !!!  

User
Posted 11 Sep 2019 at 22:59
Good news. I think a clinical nurse (if not a consultant) could explain to men that starting HT is commencing treatment and providing PSA does not increase before RT begins, this can constrain the cancer and helps shrink tumour to help make RT more successful. Informing men of this early on could help allay much of the concern a man and his family experience over what they perceive as being wasted time.
Barry
 
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