NHS not as quick as it should
April 22, 2019 at 8:46 am #14701
Today I woke up with a thought in my mind, then I opened this forum and I saw someone else who wrote this some hours ago: “My overriding impression, having followed people’s experiences, is that this disease should be diagnosed earlier but that no one in the medical profession thinks to look for it.” (the topic is here. I only haven’t answered there because he was asking another question there in the end, and my thoughts doesn’t answer to that).
I have to say I am agreeing with that. I told the story about my husband on another topic, but I will say it shortly here: In March 2018 my husband was 55 years old and we found he had a liver tumour on the left side of his liver that had about the size of a tennis ball. Malign or no it had to be operated, so it was removed and the tumour was sent to biopsy, and it was confirmed that was a Cholangiocarcinoma. During the operation the surgeon had removed one lymph node and a pathologyst tested it, which was negative to one test (Probably it was the reason why he hasn’t removed the others. Sadly, on biopsy was detected it had cancer cells too). He went through chemotherapy (Xeloda) for 8 cycles, that ended in late October.
All of that happened in Brazil, on private health service, because the public one is A LOT SLOWER than NHS (by the time my husband had the appointment with the “NHS equivalent” oncologyst it was on early September, and when I managed to get Xeloda for him on public service he was on last cycle already). We found the tumour on 23rd March, his operation was in 17th April, around 20th May he was already under chemo (that ended on 28th October). Early November his scan was clear. Following scan should have been on February. Everything as fast as it could have been.
In August last year we came to UK (Scotland) to visit family and my husband had talked to his GP about the cancer and that we were moving back here in early 2019. He told the GP when the first scan in UK should be, we handed a relatory of the brazilian oncologyst that had all details about the diagnosis and the biopsy attached to it. His appointment with an oncologyst here was in late January. His scan that should have been in early February (when he nearly didn’t have any pain at all), but the scan only really happened in late March. One week ago (15th April) we got the news by a “non specialist” doctor that his cancer is back (lots of lymph nodes are big and he has a small tumour in his lung now), that now we will be forwarded to an specialist in Glasgow (that is listed on AMMF website). The appointment will be on 1st May, and we were told that chemotherapy would start about 2 weeks after the appointment. If everything would have happened by the expected time (following correctly the 3 months scans after first cycles of chemo), my husband already would have been under treatment by now. Instead of that, what happened is that the love of my life, father of our nearly 2 years old kid, suffering and having a lot of pain and not being able to sleep (apart from all the worries we have right now).
I wonder: if we already had the diagnosis of Cholangiocarcinoma, why weren’t we forwarded straight to the Specialist about this disease at first place??? Or, as we already had the diagnosis and having a scan result like that in late March, why we weren’t forwarded directly to the specialist instead waiting over 15 days after the scan for an appointment to someone else tell us “Your cancer is back, you will be forwarded to an specialist”??
It is very frustrating and I feel like we are just losing precious time. In a situation of a rare cancer like that (that lots of studies are still needed), I believe that every single day is precious and everything should be as quick as possible. My husband already was feeling some pain back in February, but it was nothing close to what he feels now (and it got worse after the scan). Waiting without any treatment is driving us crazy.
If you look at him you can’t tell he has cancer, apart from his facial expression of pain and sadness. But still… I don’t know how it would be in private in UK or how it would be somewhere else, but it indeed give me the impression that if more patients are treated like this, they only didn’t find the cure for this terrible disease because nothing was done early enough. We can’t afford private now, if we could we definitely would…
JulesMay 9, 2019 at 12:54 pm #14764
Hi, I know exactly what you are going through. My Dad was diagnosed in March this year with Cholangiocarcinoma completely by accident as was picked up on CT chest. Within 3 weeks he was admitted to hospital for a liver re-section. This had to be abandoned as when he was opened the tumor was involved in an artery and he would have bled out if they had tried to remove it. They also found 2 other small tumors in his liver. He was discharged from hospital at the beginning of April and we were told his care would be transferred to The Christie Hospital for possible pallative chemotherapy. We are 6 weeks down the line and we don’t have an appointment for another 2 weeks. The deterioration since coming out of hospital has been heart breaking. He went in a very healthy and fit man with absolutely no symptoms. Looking at him now he has aged 20 years, lost a considerable amount of weight, is jaundiced and unable to eat anything other than soup-liquids, feels too ill to go out. We have tried to get him an appointment privately but had no success, its literally like pulling teeth, finger and toe nails. We have been in contact with PALS and there has been a complete lack or respect and dignity for my father. Not even given a cancer nurse or point of call if needed. I agree totally that there needs to be more speed for appointments. I am now fearful that Dad has taken that much of a deterioration that he wont be given the option of pallative chemo. How my Dad has been treated is a disgrace and we as a family are mortified. I am a qualified nurse and I feel ashamed working for the NHS at the present time. Hope you get some answers ASAP.
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