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Consultant appointment during chemo?

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User
Posted 18 Feb 2019 at 10:53

I would really appreciate some feedback on a query - should I expect to see my Consultant during chemo, if so, how often, or will he just see me at the end of the course?  

I last saw him on Xmas Eve (what a day for an appointment!) when he told me my PSA was up again and the recent bone scan showed the bone mets were spreading - Enzalutamide not working so stopped and the next thing would be chemo again - 10 sessions of docetaxel rather than the 6 I had nearly 3 years ago (during the course of which he saw me about halfway through then again at the end).  He said he would see me in 4 weeks which I have to say my OH and I thought a bit soon as I would barely have started the chemo then, so I was not unduly worried when the appointment did not appear.  However, the weeks moved on, still no appointment, and I rang his Secretary who said there seemed to have been a mix up and she would organise an appointment and ring me back - nothing further heard.  It is now impossible to get hold of her as her voicemail is on permanently and if you leave a message to ring back, as requested, she never does.  Spoke to my Specialist Nurse who also tried to see what was going on and a week or so ago she told me that my Consultant had a “huge backlog of appointments” (her words), was very worried about it and was holding a Saturday clinic to catch up and there was no indication on my notes that an appointment had been arranged.  The Specialist Nurse is now off sick.  None of this is very reassuring! 

Should I be worried about all this or am I over-reacting - I am due to have my third chemo Friday next week, 22nd?  I guess I am low priority for an appointment at this stage of the chemo anyway as my bloods and vital signs are carefully monitored by the Chemo Nurses, and we have an excellent 24/7 Acute Oncology Service we can contact at any time, but it would be good to know I will have an update on progress (or not) at some point - what has been other’s experience of seeing their Consultant during chemo?

Also, if the chemo doesn’t work this time, at what point does this become apparent?  Would it be at the end of the whole 10 cycles or earlier than that? 

Apart from all this, still feeling well and enjoying the sunny days.

Chris

 

User
Posted 18 Feb 2019 at 15:06
tony is on chemo course of ten, I also thought the oncologist said he would see him in 4 weeks but I think he must have said after the 4th infusion as that is when tony was seen by him, he started end of oct last year and was seen by his oncologist in January, is seeing him again next week and had a body scan last week. hope this helps

barbara x

User
Posted 19 Feb 2019 at 18:02

I agree with AC my husband had a blood test on a Monday saw consultant on Tuesday and had chemo on Wednesday .This was every cycle. 

Karen 

User
Posted 19 Feb 2019 at 21:55
That demonstrates a lack of understanding of the role of the CQC which is presumably why they have issued the plea. Everyone knows that Ofsted inspects schools and many parents choosing a new school for their child will read the inspection reports before making their final decision. Quite why patients don't read the inspection report for their GP practice or hospital is beyond me.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 18 Feb 2019 at 15:06
tony is on chemo course of ten, I also thought the oncologist said he would see him in 4 weeks but I think he must have said after the 4th infusion as that is when tony was seen by him, he started end of oct last year and was seen by his oncologist in January, is seeing him again next week and had a body scan last week. hope this helps

barbara x

User
Posted 19 Feb 2019 at 17:06
ChrisB, I find your experience odd and concerning. My understanding is that the Oncology consultant must approve each chemo cycle beforehand, based upon seeing the patient in clinic and the results of blood tests. I would say relying upon the Oncology nurses to cover the consultant's role is substandard service up with which I would not put!!

AC

User
Posted 19 Feb 2019 at 18:02

I agree with AC my husband had a blood test on a Monday saw consultant on Tuesday and had chemo on Wednesday .This was every cycle. 

Karen 

User
Posted 19 Feb 2019 at 18:24
Interestingly, CQC issued a plea yesterday that patients get better at making complaints - apparently, they are concerned that although we sometimes suffer intolerably dreadful care, the British are very reluctant to complain to the body that actually inspects hospitals and GP practices.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2019 at 21:13
There is a lot of partially justified cynicism that the medical profession like the police looks after it’s own which explains a lot of the reluctance.
User
Posted 19 Feb 2019 at 21:55
That demonstrates a lack of understanding of the role of the CQC which is presumably why they have issued the plea. Everyone knows that Ofsted inspects schools and many parents choosing a new school for their child will read the inspection reports before making their final decision. Quite why patients don't read the inspection report for their GP practice or hospital is beyond me.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2019 at 22:24
Raising an issue is one thing but getting a just outcome where someone actually takes responsibility for medical cock ups is another.

“Mistakes were made” is trotted our far far more often than people get struck off.

User
Posted 19 Feb 2019 at 23:28
These are different things - getting a satisfactory outcome from a medical complaint has nothing to do with whether an organisation passes its CQC inspection.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Feb 2019 at 10:15
Hi A C

Tony has his chemo at a mobile unit, has his bloods done on a Wednesday chemo on a Friday, any problem with his bloods as was the case in jan he is referred to his oncologist who will then investigate and do what is needed, in Tony's case 2 pints of blood. We have full confidence in the chemo nurses and Tony's Oncologist who is the only person Tony has seen since diagnosis 13 years ago. If Tony had to go to the hospital for his chemo it would take 2hours there and back plus 2 hours at least for treatment, going to the mobile unit takes about 2 hours 10 minutes there and back.

User
Posted 20 Feb 2019 at 15:34

Hello Auld Codger - odd and concerning sums up my feelings!  Have had excellent care for the past 3 years so obviously something is very wrong somewhere at the moment - going for chemo again on Friday so will hopefully be able to get some sense out of someone while we are there.  

Best wishes

Chris

 

 

User
Posted 20 Feb 2019 at 15:55

Hi

John had bloods on the day we saw oncologist, who then authorised the next chemo two days later. You couldn't have chemo without that at our hospital. So John was seen every three weeks throughout. It was clear to me, if not them that chemo had ceased to work after the sixth but they kept them going as it was doing no harm apparently. John's PSA kept going up and at the end of ten was quite unwell. I then had a month of me shouting for attention to get anyone to see him (next booked appointment was nearly three months away) as it was obvious his cancer had progressed. I finally got him in and he was out on Enza which seems to be working at the moment.

wishing you well.

Devonmaid

User
Posted 21 Feb 2019 at 09:03

Thanks for your reply Devonmaid - interesting how different Trusts vary in their approach but sorry you have had to do some shouting for attention too.  All the best to you and John and good luck with the Enza.

Best wishes -  Chris

 

 
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