Choices re oncologists in the UK

[Jessie55]

Hi all! I follow this site for my sister in law who is MBC - I am her ‘researcher’.

Have just been diagnosed myself. The oncologist I saw yesterday did not impress me At All. I can’t imagine working with him on an ongoing basis.

What experiences have people had exercising the right to ‘choice’ in the NHS at the moment? I’m struggling to even get through to a GP on the phone.

[stardust1965]

Hi Jessie55, I’m sorry you have just been diagnosed. You don’t mention if you are stage 4 or not. But your sil is lucky to have a “researcher” on her side!I was happy with my oncologist until she “disappeared” and I had no continuity with covering registrars. After 17 months of only phone call appointments and progression (that I felt could have been picked up earlier) I got a second opinion and moved my treatment to another hospital.

You can self refer or get your GP to refer you. It’s a simple process and a good oncologist would not be bothered by it, in fact they seem to welcome it. (I also sought a second opinion when I was first diagnosed.). I think I recall that it was my oncologist who referred me for a second opinion when I was first diagnosed.

I am pleased I moved my care and have no regrets except that I should have done it earlier. I live in the South East of England which perhaps offer more choice than some other parts of the U.K.

Being diagnosed with this disease (especially stage 4 de novo as I was) is scary, overwhelming and takes many, many months to come to terms with. But for oncologist it is their job. I’ve learnt to keep the emotion out of my appointments and deal with the facts. It helps them do their job. I think my expectations initially were different to what an oncologist can actually offer. They are only able to discuss medical issues and we need to seek out help and information elsewhere for issues relating to exercise, nutrition, supplements etc. That’s where this board has been really helpful.

I hope you find the process straight forward and you find an oncologist you like. 🤞

[Jessie55 in reply to stardust1965]

Hi Stardust1965. Thanks for superb advice. Sometimes I feel very intimidated by the NHS system. I will do exactly as you advise. One puts one’s life in the hands of one’s oncologist and surgeon after all. I wish you everything of the best. I can imagine the shock of de novo. I’ve just come through 4 weeks of thinking I might be too. Now perhaps not. This site has been amazing for me in relation to my sil over the last 16 months. With quite extensive soft tissue mets she is now doing incredibly well on Ibrance and exemethene (so?). Good luck to you x

[stardust1965 in reply to Jessie55]

Thank you, and I wish you all the best for your treatment and good outcome.

[BritSammy]

Hi Jessie55, definitely get a second opinion at a different hospital. I did when I was first diagnosed as I didn’t like my surgeon. I totally agree with stardust 1965 to keep emotions out of your appointments. When I got my MBC diagnosis in November 21 the doctor said did you hear me I said its stage 4. I looked her dead in the eye and said what is the plan. Also if you’re not happy with what doctors are saying tell them I am always frank and ask lots of questions. Good luck.

[Jessie55 in reply to BritSammy]

Yep BritSammy I’m realising that is the way to go. A good surgeon/oncologist with whom one feels comfortable and trusts. Empathy an extra … Gotta learn to be more assertive in this space . Good luck to you too and thanks so much x

[Garden-Lady]

Hi Jesse55 I'm sorry to hear of your diagnosis and challenging first visit with your oncologist.

I totally agree we need to be pour own advocates and ask for a second opinion if necessary. I realise that's easier said than done with the current overwhelmed state of our beloved NHS.

I have received outstanding care from Dr David Eaton of Morecambe Bay NHS Trust. He is empathic and surprisingly open-minded to complementary therapies and nutritional approaches--has read books I've given him, and supports my broad approach.

I don't know how you might be able to consult with him, but if you could, the Oncology Dept is based in Kendal, Cumbria, since the start of the pandemic.

Al the staff are outstanding and kind.

Good luck in your search.

[Jessie55 in reply to Garden-Lady]

Hey thanks Garden-Lady. I wish I could. We are in the beautiful Lincolnshire Wolds but the state of the NHS here is sadly dire. It’s been so overused and under resourced and not exactly on a career path… now I have to consider how possible it is to transfer out of the area - not necessarily as far as Cumbria but maybe some distance. I am pleased you have such an excellent team - must make all the difference x

[Garden-Lady in reply to Jessie55]

Hi Jesse 55,If you manage to get an appointment here, let me know how I can help you.

[Beryl71]

Have you thought of going to one of the cancer charities for advice or even a local hospice. I have had good support and advice from both. Macmillan are great Good luck! Carolynx