Wednesday, 10 December 2014

Confidence restored

It was my annual check up and mammogram results yesterday, marking 6 years since diagnosis and the start of treatment. All is well and, in contrast to last year, it was a good appointment all round.

I updated with my decision, taken in postal consultation with my oncologist and personal discussion with my GP but which hadn't made it to my notes, to continue with exemestane for another 2 years and then to review in the light of any new data whether to go for a further 3 years more. Dr P agreed that in the light of what we do and don't know, my  actual diagnosis and personal situation, this was the sensible decision.

We also discussed future follow up and how I'd felt about it this time last year.  My unit is unusual (as I mentioned a year ago) in that it has 10 year follow up.  The UK standard has been 5 years of follow up visits and annual mammograms and it is now moving to 1 or 2 years of visits followed by open access but with annual mammograms for 5 years before (re)joining the national screening programme.  While there is some evidence in favour of 10 years of annual or bi-annual mammograms, the evidence suggests that in most cases follow up visits after the initial post-treatment phase have little or no value in detecting recurrence. Some people may find them reassuring and others find them stressful.  Personally I can't find them reassuring while knowing that they don't have much value, but I have to say that this time I enjoyed the chat! What is more important, we agreed, is that I am alert for anything worrying that I should have investigated and that I get in touch with the clinic if I have any of these symptoms.

We discussed that while continuing on the medication, there could be some value in follow up visits, but the excellent Dr P agreed that I'm likely to know of any research results as soon as (if not before) they do, and certainly before the NHS has formulated its response to those results! On that basis, he is leaving it to me to decide whether or not I feel that a visit next December is a good use of my time, while he urged me to continue with the mammograms, but has signed me up for 8th December 2015.

This appointment has done something to restore my confidence in the unit.  My surgeon is good, but last year I found it unsettling that the unit as a whole appeared not to know and follow the emerging new good practice of at least having the discussion.  Dr P was willing to discuss that at the moment we don't yet have the evidence and that our unit is (for better or for worse) not in line with the usual practice.  More importantly he showed respect for me and my time (not something the NHS is particularly good at) and was prepared to engage fully with a shared decision-making process.  It helped that we established at the outset that we both had an interest in watching how the research unfolds and from there we could move forward with mutual respect.  Unfortunately for me, he will, of course, be gone by 8th December 2015.

Returning to the subject of last time - I went to this appointment On My Own!  I had my questions prepared (including notes of what I would want to know if things hadn't been so good).  What extra value would having someone else present have added? Absolutely none.  They could only have got in the way of the one-to-one discussion. And had results not been so good, I would have had to consider someone else's reaction when I needed to focus my attention on what I needed to know.

As it is, I can now focus my attention on preparations for Christmas and move forward into my personal Year 7, while continuing my engagement with the wider cancer research agenda and, in particular, with patient engagement with that agenda.

Friday, 5 December 2014


Not for the first time, I find myself exasperated by the patronising attitude of a national cancer charity - and once again it is Macmillan who are the object of my exasperation.

This morning's news brought their comments on a YouGov survey of around 2,000 people with cancer.  The survey found that 45% of people who had had chemotherapy, 60% of people who had had radiotherapy and 61% of those who had had surgery went to "at least one" of their cancer-related medical appointments on their own. (Though only 5% said that this was because they had no-one they could ask to go with them.) 86% of those diagnosed in the past year went to at least one of those appointment alone. Macmillan said that they found this "deeply saddening"

Now this might mean that a substantial number went to all or most of their appointments alone or that most people had someone with the most of the time but went alone once.  Which means that without more information than they gave in their saddened press release, these figures are pretty meaningless other than in the case of the 5%.

One person they mentioned commented that staff had looked at him with a mixture of pity and intrigue when he turned up alone, but Macmillan didn't comment on the inappropriateness and unhelpfulness of that reaction.  What their Head of Health and Social Care is quoted as saying is this "There is no-one to act as their advocate, asking the doctor the questions they might not have thought to ask because they are too overwhelmed, or to calm them down if they are stressed or anxious."

Next week I will go to my appointment alone, as I have done all my others except one.  The exception was the one immediately after surgery, before I was driving again.  A friend drove me there but didn't come into the appointment with me and although I'm sure she would have done if I had asked her to, it didn't cross my mind to ask.

I will, as usual, prepare for the appointment in advance as I have done right from the very first one.  I will have thought of the questions I want to ask and written them in my notebook.  Yes, I will be anxious and it will be a bit stressful - not helped by the fact that the odds are that the clinic will be running very late.  However, simply having someone else there is not going to make that wait any easier and why would I need someone to calm me down?????? After all, I know it isn't the receptionist's fault that the clinic isn't properly planned and by then I will have calmed down from my current state of exasperation at the reaction to this survey.

There is nothing deeply saddening about me going alone to my appointments. They are my appointments and my opportunities to ask what I want to know. What is deeply saddening is that hospital and cancer charity staff have problems with cancer patients attending appointments on their own and it is an absolute scandal if staff regarded the patient quoted with pity.  I do know from conversations I have had when I've been at conferences that some who work in cancer services feel more comfortable if a patient has someone with them.  But that has more to do with their own feelings than the needs and wishes of the patient!

Instead of reinforcing a stereotype of the weak, feeble and overwhelmed cancer patient, charities set up to support us should be challenging the assumption that all patients should have someone with them for all or most of their appointments because they can't manage on their own.
We need empowerment, not patronisation!