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Lisa47
Posts: 1
Joined: Sat Feb 02, 2019 9:57 pm

Looking for an integrative oncologist in the UK

Postby Lisa47 » Tue Feb 26, 2019 7:50 pm

Hi, I hope this is the right place to post (if not, please do point me in the right direction - this is my first post!).

My Mom has Stage IV PC and in terms of NHS care, we are just about to start her 3rd cycle of Folfirinox. Alongside this, we are also working with a very well qualified functional medicine specialist; an oncology clinic in London for use of off-licence meds; and we have a fairly broad complementary plan in place at home.

However, we are having some challenges with Mom's NHS oncologist who is completely closed off to considering any options other than standard NHS palliative chemotherapy and that includes being unwilling to even discuss the other things we are doing, even though these are under the guidance of highly qualified medical practitioners (all GMC registered and in the case of the London clinic, specialised oncologists!). We are trying to get a second opinion on some of Mom's standard treatment to make sure we optimise everything we are doing in the right way and the ideal would be to find someone who is a little more up to date with the current research and at least open to discussion to address some of the questions we have! The first referral request has been at (Moderator - post edited) for about 5 weeks with no reply, despite chasing (as we were potentially interested in one of the immunotherapy trials at the same place as well) so in the absence of any reply, we are now looking at trying (Moderator - post edited) instead so that as a minimum we can get the best out of Mom's chemo (which is a real slog where we are now).

Does anyone have any suggestions for finding a really good, forward-thinking oncologist who is happy to at least talk to us about our overall plan and some of the newer treatment options available (and i'm talking about things which are well-researched and documented, and at the very least at in vivo and usually clinical stages). We just need someone to help us pull all the bits of our plan together - I have a science background and have been researching hard, but I am not an oncologist and we need the right extra person on board to complete Mom's wellness team!

Thanks in advance for any advice you might be able to offer.

Theresa Upton
Posts: 58
Joined: Thu Oct 11, 2018 4:39 pm

Re: Looking for an integrative oncologist in the UK

Postby Theresa Upton » Tue Feb 26, 2019 8:13 pm

I cannot help you but am interested in hearing if anyone out there has any advice. I have just completed round 9 of folifirinox, have been referred to the trial you mention (not heard anything) and want to know if there is anything at all that might be off help.

PCUK Nurse Rachel R
Posts: 50
Joined: Thu Jan 25, 2018 10:52 am

Re: Looking for an integrative oncologist in the UK

Postby PCUK Nurse Rachel R » Fri Mar 01, 2019 5:01 pm

Hi there,

Lisa47, I’m very sorry to hear that your Mom has been diagnosed with advanced pancreatic cancer. I can appreciate that you are going through an incredibly anxious time as you try and navigate your way through treatment options and do all you can to help Mom.

I will send you an email so that we can talk directly if you wish about some possible ways forward.

Also, just a quick reminder not to share any specific names of individuals or teams please on the forum as per our rules, this is in relation to perhaps negative experiences and also in asking for specific recommendations of Health Professionals. We’re aware that this often seems the natural thing to do but we recognise that the forum is not the appropriate place to share this information. Thanks for your understanding.

Best wishes,

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707