I had oncologist phone call today. He seemed very pleased and confirmed the written info I'd received the other day, that all is stable. I pressed him for three months ibrance so that I can actually make plans. I also move to three monthly zolondronic acid after next week. So if I can have all of that within the same couple of weeks, I can spend more time in Scotland.
However I asked him about this and his response was, 'as long as you come back for your treatment'. When I asked what would happen if I made a more permanent move, he said he wouldn't recommend it. It was important to come back here for my treatment as if things deteriorated I should be here where my treatment takes place.
Have any other UK members had a similar situation? is it so difficult to transfer your treatment to another part of the UK. After all with all the data held electronically, surely it should be quite straightforward! He said, we have your history and the referral process is really difficult. I was surprised and a bit disappointed. But I'm a lateral thinker, so I'll find a way round it. Perhaps I'll just keep a pied a terre here. I'm determined not to get dragged into the mindset of being a patient and my life managed around hospital appointments.
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Beryl71
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I am appalled at the attitude of your oncologist! He needs to read the 2019 guidelines for oncologists from the European Society for Medical Oncologists (ncbi.nlm.nih.gov/pmc/articl....
We too have socialized medicine in Canada. Although I strongly believe in socialism, I also well know that the security of a civil service job leads to inappropriate attitudes on the part of some civil servants (I retired from a position as a chief psychologist in a psychiatric facility). Perhaps it would help if you ask for a second opinion. (It certainly made a major difference in my case. I could not have worked with the original oncologist assigned to me at our local cancer center. Her arrogance and lack of patient skills made her seem totally unapproachable.)
I really can't see why you have to humour this unreasonable clown. You are not asking for much at all, just an electronic transfer of your file to the closest care center in the Hebrides?
I am not a UK resident so I can’t speak to your specific question.
However, FWIW, I switched oncologists in 2018 after my MBC diagnosis. The prior doctor was ok but not equipped for the new medical and emotional issues associated with MBC. It was too challenging to communicate with her. I need a collaborative approach.
My new onc fits my needs to a T. You deserve the same. Your need to travel, to be with Ron, to embrace this time are all important quality of life issues which must be respected.
Sounds a bit extreme that you cannot transfer treatment and not fair either if you choose to do that.
I’m sure even if it wasn’t a quick process as soon as it was sorted that would be it. He needs to explain more as to why it would be complicated. There was a programme on TV a few years ago about people getting medical treatment on the isles, Shetland I think, they had district nurses giving chemo etc it was really informative, I remember watching it.Island Medics it was called on BBC.
I’m not in the UK, but we recently moved to another state, partially to change to a different onc. My old onc did state however that having cancer should not be a factor in whether or not I should move. Good care is widely available. Although it can be time consuming and frustrating , you need to be where you are happiest! Good luck!
I live in Scotland and cannot see any reason why you could not transfer your care up here. Your onc may, of course, be referring to the access issue - it sounds as if he feels you should be nearer a big cancer centre in case you require more complex services in the future. There will be women in the Hebrides who have mbc and it will be possible to get basic care there, but for the more specialist cancer services you would probably have to transfer to Inverness or Glasgow with all the faffle that involves. He might also be thinking about the problems with joint care, splitting your care between the Hebrides and the centre where you currently receive treatment. With technology (e.g. digital health records) and telemedicine, it should be possible but is probably not a priority at the present time. At the very least, though, that three month window is great!
Thanks, that's a helpful and measured response. My attitude is that I'm travelling the length of the country for my treatment now and if I shifted hospitals going to Glasgow would not be so far! We will see. Where in Scotland are you?
I am in Ayrshire. When I lived in Glasgow I went to the specialist Beatson Cancer Centre. Now I go to my local general hospital in Ayrshire who link in to the Beatson as required. The important thing for all of us is to try and live the life we want in the time we have got and I don't see that transfer of your care should stop that. Good luck!
Hi Beryl,I’m not familiar with the rules/regulations with UK medical structure. But treatment coordination occurs common place here in the states. My oncologist once told me that a treatment chair is just that- a chair - and can be in any location you want it to be. As others suggest here, I would press on and request a second opinion in the location you want to be and see what that onc says about it. Why the heck wouldn’t your current MD want you to be in an uplifting environment to help your psyche while battling this demon? Perhaps (and this is conjecture) your Onc is worried that you would skip treatment if not under his care and this is why they suggest you return routinely. Or maybe your Onc just has a huge ego. However Cancer treatment should ALWaYs be a collaborative effort and not separated into individual spheres.
I don't know about the healthcare system over there, but with a bit of hard work, it is possible to live 2 places in the US and get healthcare in both. I don't think the doctors care very much for this, but I do it. The key is keeping both doctors completely informed as to what is going on with my case. With me, one of my docs is at a major medical hospital and the other is in a minor metro area. (Chicago and Las Vegas). I get all my testing in Chicago and shots in Vegas. It works. The most important part is showing respect to all doctors involved.
I think you'd be able to move. What if you ran out of all your money to live and had to move in with your child somewhere? They couldn't deny you coverage and make you live on the street.
I am so sorry about the response you received from your oncologist. I'm sure there are very qualified doctors in Scotland if you decide to move there. I hope you don't let his advice tie you down and pray that if you move, you find a wonderful doctor to take care of you and allow you to enjoy your life and whatever plans you have. Sending hugs.
If your current arrangement doesn’t work for you then you shouldn’t hesitate to move. Your GP can refer you or you can self-refer. I let my oncologist know and they were fine with it. Your medical history will remain with your current hospital but your new one can ask for a copy of any relevant records. If I’ve learnt one thing about the NHS it is that it is not joined up.
Perhaps your onc was concerned you wouldn’t get the same level of care but it is your choice not theirs.
If you think moving to Scotland is what you want then don’t let this disease hold you back.
Yes go live your best life in paradise! Says the woman who almost 1 year ago left my home in nz ( paradise) and now live in Boston near family…. And lots of snow!
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