I have been on immunotherapy for 15 mths to treat 4 HCC tumours . In December 2023 my scan showed some ‘pseudo growth’ and I was given a further 3 mths treatment. Last Monday I was anxiously awaiting my results for the latest scan. The oncologist phoned and reported “no spread but some shadows a little bigger” and I would be given another 3 mths treatment. I was really happy to hear that they would continue treatment. I then asked how much the tumours had grown and at first the doctor said she couldn’t read from the scan but she went back into my notes to “discover” this was the 2nd reported growth and immediately said she’d stop treatment and start me on regorafinib. I asked her whether there had been a team meeting to discuss this and she said “no”.
I’m meeting her Monday week so she “can look at me “ and I guess advise further but I’m tormented both by the news (prognosis 3-6mths) and by the casual approach. I feel a complete loss of confidence in the consultant team. Am I over reacting?
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AthenaJason
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My G.P., practice , since it was amalgamated, is now operated entirely by a team of pharmacists with whom I have no real relationship. Once, I related that I was experiencing similar, 'side effects' which were very simlliar to a friend and were making me feel worse, the response was " Its does not mean that because your friend has those symptoms that you will have them, too"!!! I am sorry, Athena that you have such unpleasant news and you arebeing undermined by those who are meant to be helping you. I believe this happens when one is seen as a combination of symtoms rather than a person. I am somewhat jaundicedd (Perhaps the wrong word to use here ) I write this after spending four hours waiting, in my wheelchair for a CT scan. I had been forgotten LOL! A friend asked "So this is how they treat their cancer patients ?" (I am certain that this is not so and we are surrounded by teams of excellent people who want to excel I hope that something occurs to restore your faith Maybe when you begin your chemo the results will bear beautifull fruit! I pray it will Apologies for this garbled response (Brainfog hangs like a pall today), Kindest regards, Jon
Thank you for your good wishes and I’m sorry to hear that you too have experienced poor care and unhelpful communication.
I try to start every conversation with my consultant(s) with a question as to whether they have read my notes and are across my recent treatment plan. Experience has taught me to do this as I have often had to bring doctors and specialist nurses up to date. But last Monday, I forgot to do so and therefore was given a false positive followed by a swift reversal and what came across as a unilateral treatment plan given on the hoof on the say so of one consultant.
Sorry if I’m repeating myself and I’m probably in bargaining mode and I do understand the pressures on nhs staff, but I think they would save time and engender more confidence if they just read notes properly before a consultation!
Sending best wishes for your treatment and thank you for your encouragement,
This kind of behaviour by NHS staff is common and i think comes from the confidence that no matter what system will always back NHS staff....overloaded with work became standard answer for everything , similar to "due to covid", In last few years. Problem is incompetent Dr. With bad work ethics are hiding behind this "umbrella term". Sorry to hear that Athena....they should have definitely get back to you on very first time.
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I am also very sorry to hear of your recent experience and hope you manage to fully explain your position and feelings regarding this matter when you see your consultant face to face. And like Jon I will also be praying that any further treatment regimes you have will improve things for you.
Hi, you are not overreacting, simply reacting to difficult and unclear information. It's very hard to deal with scan information. I was on immunotherapy for five cycles for HCC and it had to be stopped due to my body attacking itself. Do they have another treatment option for you? I took wish they would call you only when they have the answers to the questions they would normally get asked after such news. Hope you get some clarity and answers that help
They want to put me on regorafinib. I’ve looked it up but I’m unclear as to whether there are alternatives. I’ve come away for a few days to try and relax and I guess I’ll know more on next Monday. I’m sorry the immunotherapy didn’t work with you. Did they give you another treatment?
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) I write this after spending four hours waiting, in my wheelchair for a CT scan. I had been forgotten LOL! A friend asked "So this is how they treat their cancer patients ?" (I am certain that this is not so and we are surrounded by teams of excellent people who want to excel 
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