When I wrote about how good the ‘Younger Women Together’ event for women with primary cancer (under 45) was, I never anticipated that I’d be back so soon for an event for younger women with secondaries (or metastatic cancer)! I am, however, very grateful for the fact that these events exist, because it just helps so much to be in a space with other women who are in the same situation to you.
I missed the introductions as I had an appointment at the Christie on the Friday morning. I had written in my diary that it was an ‘ultrasound for thyroid’, but hadn’t read the letter that also said that it was a ‘Fine Needle Aspiration’ (2 small needles into my thyroid/neck). The specialist said that he can’t see anything suspicious on my thyroid (2 are slightly larger, but not uncommon, but ‘because of your history, it’s best we check’ (how many times do we hear that?!). Anyway, got next appointment with the oncologist on 18th March, so should get results then.
Medical Update: Management of Secondary Breast Cancer in Younger Women
I joined the event as Dr Elena Takeuchi was showing some stats, and discussing the way that cases for younger women are managed with advance/secondary/metastatic breast cancer (concerns are often different than older women with breast cancer, especially around work, fertility, etc.).
There were a lot of stats/charts in this session, focusing on the fast-changing nature of the situation (and therefore the hope that is there for treatment, if not cure), with a big focus on individualised treatment, and the fact that there are still a lot of options.
I loved, and am a bit overwhelmed, by the number of people it takes to get us through (and in conversations afterwards, the patchiness of some of this provision – part of why I’m very grateful to be part of the Christie network)
‘Supportive Care’ is the name that some palliative care departments are calling themselves (because of the association with ‘end of life’ care)
I think I enjoyed this session with Tracey Coleby the most over the weekend, despite being quite nervous about going – that it might be that focus on end of life care (or that’s what people in the group would ask questions on). It appears my notes will have likely come up at MDT’s that Tracey will have at been at over past few weeks!
Tracey talked about efforts made to rename palliative care (as supportive care), and that before too long, that too would become associated with end of life care, so it’s more about re-educating people that palliative does not necessarily mean end of life care (and hospice is not necessarily end of life either). End of life is a fairly small bit of the job.. it’s more about patient centred care and effective symptom control (some are Macmillan nurses – but that’s about who funds the post).
Described as a holistic approach, individualised care, advance care planning (not waiting for the end – e.g. in planning treatment, is travelling, etc. still important to you, so does that affect the type of treatment and it’s potential side effects), supporting a good quality of life… dealing with social, physical, financial, mental, etc. The expectation is that if side effects are managed to give a good quality of life, you’ll tolerate the treatments for longer, therefore a ‘better outcome’.
At the Christie, they’ve been working on a more collaborative approach to working, between the medical teams, nurses, and the community (e.g. GPs – although I went for my Zoladex injection 1 week/5 weeks after secondary diagnosis, and the GP system hadn’t flagged my new diagnosis up; this is particularly important because WE LOOK WELL, and GPs are not specialists, especially in metastatic cancer).
There’s a lot of emphasis on symptom control, trying to keep appointments together, because time is precious (although I had 7 appointments this past week, it did feel that calendars between the hospitals had been looked at – it’s a bit like the university calendar management – got to balance academic/student calendars – or in this case consultant/patient!); keeping on top of side-effects, etc so that there are less CRISIS interventions; and – if the patient is open to it – open and honest conversations about next steps/options.
There’s a question of standardisation of expertise/access around the country (it’s a bit of a postcode lottery – I’m not in a hurry to leave the area that the Christie covers!), so some people will get this as part of what their team provides or signposts to, and other patients will have to actively seek out palliative care teams and hospice visits (where inpatients and outpatients are typically kept separate – are options for daycare and complementary therapies). The key question palliative care teams ask is WHAT DOES THE CANCER STOP YOU DOING (and can they help you do it?)? Question of CONTROL. Look out for Secondary Days in Manchester.
We heard Paula’s story … Paula was originally given a very small handful of months to live, and had reached this state (TBH, a state I totally fear)…
but with help from the palliative care team, her pain was managed, she was given new drug options, and ‘got her life back’, travelled a lot, and survived about 8 more years.
When Tracey joined the Christie in 2008, just seemed to be a series of crisis points, and feels this is now much better managed – planning for both best and worst case scenarios, with a care plan in place at MDT before the patient comes in for the clinic (typical for surgery, less for other specialisms). Also trying to ensure that nurses are not there ONLY for bad news… can be involved from first primary diagnosis – don’t need to wait for pain/mets.
Trials are aways considered when there are changes in the tumour – note that for trials ironically need to be relatively well (to be able to withstand the treatment), and for the time delay, etc. It seems that belief impacts behaviour, pain – drains energy. Don’t assume that all symptoms are about decline, but can also signal an improvement.
About QUALITY OF LIFE – to be as well as you can be for as long as possible. It’s all very individual – try not to compare with others.
We looked at walking, cycling, and swimming (when not on chemo) as being the best aerobic activities, whilst weight-bearing exercise (own body, or supported weights) helps build bone strength (build up kg/reps gradually).
Consider using resistance bands as well as body weight, build HR gradually, and look at 150 minutes of exercise (about 30 mins a day – at a good heart rate – and yes, housework, etc counts), with around 2 resistance exercise sessions in there. Also flagged up that there are GP referral schemes such as PARIS.
There was time before dinner to go to the Cloudwater Brewery (no, I don’t like beer, but I like trying new things), raising a glass to Angela, who only reached 41 before cancer took her :-(. After dinner, a handful of us headed out briefly, before returning to the hotel for 2-4-1 cocktails:
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Clinical Research/Trials/New Treatments
After a good breakfast, it was time to join Dr Donna Graham in her talk on clinical trials…. very complex, but many many options, including for women with secondaries. She looks after all kinds of clinical trials for all kinds of different cancer – can affect treatment, risks/causes, prevention, screening, diagnosing or controlling symptoms. Today’s talk to be focused particularly on drug trials, and how they can make a difference.
A lot of research has (and is) done into biomarkers – such as Oestrogen positive or Herceptin receptive cancers, and now there’s a lot of research into genomes (and immunotherapy is quite a trendy research area too).
We looked at what is a clinical trial (aka, why can not everybody just be given this medication when it’s discovered?), and how it’s often ‘easier’ to block an overactive element than stimulate an underactive one.
The phases that clinical trials go through before they become standard medication (including mandatory trial on 2 x animal species before tested upon humans):
We see how it can take 20 years, and about $1 billion of investment (and lots of ‘failed’ research at further cost) before a drug can be registered for standard use – note that trials can be abandoned at any time by the trials companies (if you’re one of the rare people it was working for, can be difficult to get more drugs in that case):
And looked at the number of patients involved at each stage (e.g. the Optima trial I joined to see if chemotherapy would benefit is Phase 3, and the CORE trial I was originally offered for stereotactic radiotherapy was Phase 2/3)
If you’ve joined a trial, if it’s clear that it’s not working, or the side effects are intolerable, you’re not committed to sticking with it, and likely to be taken off it. Even once a drug is on the market, it will be subject to ‘post-market surveillance’.
To be eligible for a trial, you either need to be very well, or out of other treatment options (and therefore have little to lose on an unknown drug … there was definitely some people in this situation at the event :-(). In some ways it’s quite depressing to see that most increases are listed in months (e.g. 18 months), but that is considered a success (whereas a couple of weeks isn’t).
There are efforts to look at global recruitment and collaboration in order to get drugs to market faster (hopefully at less £). There are hundreds of trials happening at any one time, but in the USA last year there were maybe 15 oral drugs approved by the FDA (no idea on IV drugs), and that doesn’t mean automatic licensing in UK. A lot of drugs are currently approved by the EMA, in the UK drugs have to be approved by NICE (especially to be approved on the NHS, and only in certain situations – e.g. I need pertuzemub, but I can only have it with docetaxol chemotherapy (one of the nastiest), even though I don’t really need the chemo). Someone asked what is Brexit going to do, and of course NO ONE KNOWS – which is quite terrifying!
Finding trials (as your oncologist may not necessarily be aware/offer you all options):
- Breast Cancer Care information on getting involved in a trial/links to finding trials.
- FDA Clinical Trials (USA)
- EU Clinical Trials for Metastatic Breast Cancer (is what Google gave me first in searching for the above)
And in our region, there are active participants of ECMC. So here’s to good communication:
Adjusting/Adapting to a Life-Limiting Illness
I know I ‘look very well’, which most of the time I’m very grateful for, but sometimes it’s frustrating that people just expect you to be ‘back to normal’ when your head if quite scattered, and your body is going through so many more tests and treatments – which require you to be at home (very thankful for the way my house has progressed over the year), and a lot more time in bed, and everyone else’s life seems to continue. As there were other sessions on dealing with diagnosis with your children on at the same time, it was really helpful to be in a session with people who also don’t have any (sadly, most of whom want/ed children), and think about the challenges we face (and strategies for managing them), especially the responsibility/guilt we feel for those around us, and how we need them to help us get through (and how little support there is for those ‘PABC’ (People Affected by Cancer, but who don’t have cancer). Session was facilitated by Helen Miller from the psychiatry team at the Christie.
So I appreciated this from my colleague Jeff (and MMU for featuring me on #IWM19):
Nothing short of admiration and wonder for @drbexl. An amazing colleague. Said to her the other day how she manages to have such positive impact through one of most awful things in her life is incredible x https://t.co/gYs44r1rmh
— Jeff McCarthy ?? (@RunEatRepeatuk) March 9, 2019
Other Services Available
We discussed the range of options available at Breast Cancer Care (including specialist secondary nurses, as many BCNs are much more familiar with primary cancers), and other places to go for support (I’m too old for quite a few of them):
At the end, we risked nodding off, in a guided mindfulness session with Kelly Birtwell from Uni of Manchester.
Also last year, I had chemotherapy on my birthday, and was looking forward to a more fun celebration this year!
To be fair, I did have fun – and went out for some cocktails after the event:
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and some food:
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And so lovely to be remembered by so many people: