Haven’t written on here about my brother’s OS cancer which was diagnosed last November. He had a JJ feed tube installed due to size of tumour blocking his oesophagus. He had four rounds of FLOT chemo pre surgery. Tumour did shrink and he was able to swallow liquids (tea) for first time since October. He was due to have oesophagectomy end of March but due to COVID hospital wasn’t doing any elective surgery. Finally he was given a date of 15th April for surgery (the date when Gov have go ahead to restart elective surgeries but because his hospital didn’t have a COVID clean wards his op was postponed again. I wrote to his MP who contacted the CEO of the hospital. They transferred him to a hospital in Oxford which was clean from COVID but by this time he could feel the the tumour had regrown as he was unable to swallow fluids again. Finally he was operated on on 15th May 3 months after finishing chemo. What should have been an 8 hour op, lasted under 2 hours because when they opened up his stomach they found that the cancer had spread to his peritoneum and so they stopped.
I took him to see his original surgeon for an outpatient appoint the week after discharge where he was told that the cancer is now inoperable and any treatment would only be palliative from now on and that the consultant oncologist will see him to discuss future management of his cancer.
It is now over 6 weeks since his aborted operation. Every Thursday he is given an appointment to see or speak to consultant oncologist, every week she has cancelled the appointment, instead asking for some sort of procedure (basically the NHS can only manage one procedure a week as an outpatient).
As you can imagine back in May we were both very angry about how COVID and the poor planning in the cancer units to keep COVID clean basically killing my brother. Every time I hear A politician say that the NHS has coped I get angry because it hasn’t coped for people
Like my brother who do t have COVID but needed hospital treatment. 😡
But now I cannot believe the lack of empathy, respect, and basic common decency from the Consultant Oncologist who hasn’t spoken to him post operation and indeed has never actually spoken to him, during chemo she always sent her registrar to speak to him. Well all he gets is phone calls from medical secretary and specialist nurse.
Is it just me or is this really poor service from the consultant? Have other people been treated in the same way? It makes me so angry that she doesn’t have the common decency to pick up the phone and speak to him. She always has an excuse that she hasn’t got the right lab results back to discuss treatment, but he now has incurable cancer and she won’t speak to him. I get the impression that she has forgotten what this may be like for the patient, how scared he is and no one has told him what to expect, how long he might have to live, or even put him in touch with a support group. I am an allied health care professional and a retired lecturer who used to train occupational therapists to work in The NHS and Social Care. I just can’t get over the lack of empathy. Don’t get me wrong everyone is very pleasant and working under incredibly difficult circumstances at the moment due to COVID BUT to cancel 5 appointments and not be bother to speak on the phone is in my book beyond basic professional standards.
For obvious reasons my brother doesn’t want to complain because he doesn’t want to receive an even worse service but it isn’t right is it.
😡😢😡
Sorry for rant. I’m less angry than I was after we heard cancer had spread and it was too late. But just wanting to know if it is a common experience for the Consultant to devolve all communication to her team and not bother to speak to patient themselves.
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HarryJaffa
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Extremely sorry to read about your brother's prognosis and your emotional turmoil.
This forum is to help you soothe, perhaps might not find all of the answers here, every time.
The OC is very aggressive form of deceptive cancers and one of the top fatal one's. Majority if the time actual staging can only be done when the nodes have been removed during the surgery and sent to lab for histopathology. Any staging prior to surgery even with all the scans including PET scan etc is indicative and not conclusive. For the advanced tumour growthso there is always an element of nasty surprise.
I am post OC oesophagectomy by 2.5 years almost. To date I never known or met my oncologist, it was only surgeon and the CNS, apart from them consultant gastroenterlogist visited me prior to discharge from hospital. Decisions were made during the MDT and conveyed via surgeon.
Typically histo lab reports take minimum of 2 weeks onwards to 6 weeks during normal times. Unfortunately due to Chinese virus situation much of the other staff have been diverted to frontline virus wards. Even paediatric nursing g staff sent to virus shifts. Meaning the timeframe for the lab reports must have been deteriorated.
Most importantly when the surgery attempted in different trust's hospital then this opens up can of worms due to nature of the beast for formalities. Suggest consider the histo lab reports to be conveyed back to the attempted surgical team, for them to transmit to your brothers team at his local hospital. So believe the normally painful timeline is definitely no helpful to your brothers case.
A oncologist without the lab reports won't be able to discuss anything further, in my view.
CNS should been able to refer you to counselling groups or charities local to your brother to help him and those will be able to help him and his closely family and friends.
I have become more spiritual since my journey and thats helped me with my content essay of the life today, nothing guaranteed tomorrow.
I dont make many friends due to being honest and blunt, there didn't seem any promising prognosis after initial discovery, perhaps it was already too late.
I dont know your brother's location but please search for maggies, CLAN or macmilan charity organisation as well OPA support groups nearby.
A formal complaint letter should definitely be sent if that's what your brother or you think is right for now. At least it will seek answers to your built-up anger and frustration. We know it won't change the prognosis but will being you answers. I would doubt if complaining would change the treatment at all. Please don't overthink in that direction.
Also ensure that sufficient or higher levels of pain medicines are offered to him in his current protocol. All focus should be physiologically pain-free health for the time being, as reasonably practical. Psychological contentment is his own work out and so is yours.
I do apologise if I have come across very blunt, but suggest pointing the energy towards mental wellbeing of the patient. Its easier said than done, but please 🙏 try.
Thank you for taking the time to reply HJ. In a way it is reassuring to hear that you didn’t get to see your oncologist either although I still don’t think that is good practice. My brother knows that there is no cure but being left without information is very frustrating and disappointing. Compounded by endoscopies having to be repeated because they took the wrong samples. Clearly the biopsies taken at the Oxford hospital in May need to be retaken in Guildford because of the time lapse. Frankly it has been a mess but we know it is because he is no longer a priority as he can’t be cured. With the current reduced capacity in the NHS due to COVID I am guessing that they are prioritising those cancer patients they can help.
Can't comment of practice good or bad. But believe it has to be best tailored as per the unique case conditions in an ideal world.
Was discussing this with wife and she said the detection and prognosis attempt to improvement in such cases was going to be adversely affected due to the virus situation developing.
Lack of information is always major cause of frustration. Have been there and still suffering it. Still struggling myself on resolving my dumping related issues. Its a daily fight and uphill task to seek proper help. Self managing it.
I would suggest if there is scope for improvement to write to the board and asking them to reflect on it.
Endoscopic are intrusive and may not what your brother want to experience. Suggest having his views considered primarily.
I would disagree on priority, treatment to cure may not be the option available as said however his care is still a priority hence my persistence on achieving pain free sustenance for your brother to the maximum available protocol or depending upon situation exceeding the protocol. Thats priority.
Virus infection is getting lesser and lesser and hoping this should start bringing back capacity to other care.
You sound like you have had a poor experience. This is of course tough times for the NHS and I think many NHS staff would also disagree with the politicians. But, being stretched is no excuse for a lack of empathy or compassion. I used to be a Director of Nursing and I always wanted to hear these stories myself as it helped to set out my own priorities. Also, anything I could do to try and stop something escalating into a complaint was time well invested as a complaint can make the person feel they have hit the last resort. An early resolution or even explanation is best for everyone. I wonder if it is worth you trying to book a telephone call with the Director of Nursing and sharing with them your experience. If the Director can not hear you directly then the Deputy Director may also be able to help. The hospital may also have a PALS service and this can also be a helpful way of sharing your experience. You will of course need your brother’s permission to have a more meaningful discussion otherwise the discussion will be limited to non specific issues.
I think its disgusting and you have every right to be angry any one would be have you got the phone no for consultant who isn't phoned him in person you phone and insist that he/she speak to your brother and if they dont then put in a formal complaint about them that's what I would do good luck and sending you both hugs xxx
Finally my brother was called in for an appointment with the Oncology team yesterday. He had originally been told it would be a telephone call to consultant but the night before they rang him and asked him to attend in person. It was such short notice that he couldn’t arrange for anyone to go with him, so yesterday he went alone.
Obviously he didn’t see the Consultant he saw the Registrar. 😡.
Well he came away confused frustrated and a sense of feeling that they don’t believe him.
So a reminder, back on 15th May he was transferred to a different hospital in Oxford (due to COVID at Royal Surrey) and that was about 6 weeks later than they originally planned to do IL operation and after four sessions of FLOT. Chemo.
The operation was aborted as the surgeon found that the cancer had invaded the stomach wall and he had declared that the operation was no longer appropriate. When we met his own surgeon at Guildford he was told that surgery not an option and that he will now only receive palliative care going forward.
After several weeks of tests and scans, he was told that they couldn’t find any cancer on the scans and so they will not be treating him but will review in 3 months.
I guess normally this is good news BUT it doesn’t make sense. We are so confused. I’ve spent the night over thinking it all.
How can there be no cancer when the surgeon saw it with his own eyes when he was in his stomach. My brother has stopped being able to swallow food again and feels that his tumour in his oesophagus has got bigger. The hospital couldn’t pass the camera past the blockage in their first attempt doing the endoscopy and had to call him in for another try.
Now he is being told there isn’t any cancer present. Well where has it gone? He hasn’t had any treatment since the surgeon opened him up and saw the cancer.
As I say this should be good news that he is in remission but we just do t trust the team or a word they say anymore as there have been so many mid communications.
I’ve suggested he takes his letters to his GP to discuss and maybe seek a second opinion. Also suggested he try and contact surgeon in Oxford with the news re scan resul and ask if it is possible for scans to not pick up small tumours.
He has had so many delays in treatment and diagnoses so far he is scared to leave it another 3 months.
Don’t get me wrong, no one wants to go through more chemo especially if it not required but the two stories do not tally and the doctor yesterday really didn’t reassure or explain the situation well enough. I fact he said “well hasn’t anyone told you “ to which he had to say “ no one has told me anything and hasn’t spoken to consultant since January
I only hope it is good news but we have lost trust in this onocology team who basically said there is no reason they could see why he couldn’t swallow food when clearly he has tried and not succeeded since the surgery. So they don’t believe him and we don’t trust them.
We should be celebrating instead we are confused and angry.
Sorry for another rant but you replies have me helpful.
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We have a diagnosis - of sorts
Here we go again
Awfully worried about pain in right side 3 years after Ivor Lewis op
