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.
Wednesday, 10 December 2014
Friday, 5 December 2014
Exasperation
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!
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!
Saturday, 15 November 2014
Last day and the Best of the Rest - NCRI Cancer Conference
In some ways Wednesday morning felt a bit of an anticlimax. There were no posters to view, the exhibitors were gone and delegates were leaving for the station throughout the morning. Never-the-less, it started with a thought provoking plenary lecture by Peter Vedsted from Aarhus University. His title was 'From symptom to cancer treatment: the vital clinical and political leadership'.
Denmark, like the UK, lags somewhat behind most of the rest of the developed world in cancer survivorship and the two countries also have a similar primary-secondary care interface. This makes an examination of the symptom to start of treatment phases of cancer care an obvious subject of study. Peter Vedsted looked at the responsiveness of primary care and GP's access to investigations with a view to a faster symptom to treatment pathway. Guidelines for onward referral, duplication of work and in/efficient use of resources were discussed.
This plenary was followed by a set of parallel sessions before the final plenary lecture was given by Elaine Mardis of Washington University. She spoke about cancer genomics and recent trends. Heterogeneity was again a key issue, including the role of medication in this process. She discussed an autopsy case study in which multiple metastatic sites were sampled and which showed that some did and some did not respond to targeted therapy. She then went on to speak about co-opting the immune system and the use of personalised vaccines to support this.
Then it was time for Charles Swanton to make the closing remarks and whet the appetite for next year's conference.
There is never enough time to go to everything of interest and parallel sessions, while sensible and practical, can make decision-making difficult. On top of this, many of the consumers have issues with fatigue and we need to take a break every now and then. So here are some of the sessions I would have liked to attend but couldn't …
Peter Sasieni hosted a a session on prevention with Jack Cuzick on chemo-prevention of breast cancer, Peter Rothwell on the effect of aspirin and Tim Lobstein looking at obesity. However, I was committed elsewhere at that time slot.
I would have liked to have attended 'Interventional Oncolgy', which examined trends in the interface between clinical oncology and radiology, but unfortunately it clashed with the debate. I also missed the sessions on 'Cancer Evolution' and 'Biology of the Radiation Response' due to clashes.
I could (just) have squeezed in 'Routes from diagnosis …' but in what was a very full day and evening I really did need those 70 minutes to go back to my room, have a shower, a cup of tea and put my feet up for a bit.
But you can't do everything and it is the sign of a good conference when you leave wishing you'd had more time but knowing that you probably couldn't have taken in much more.
Denmark, like the UK, lags somewhat behind most of the rest of the developed world in cancer survivorship and the two countries also have a similar primary-secondary care interface. This makes an examination of the symptom to start of treatment phases of cancer care an obvious subject of study. Peter Vedsted looked at the responsiveness of primary care and GP's access to investigations with a view to a faster symptom to treatment pathway. Guidelines for onward referral, duplication of work and in/efficient use of resources were discussed.
This plenary was followed by a set of parallel sessions before the final plenary lecture was given by Elaine Mardis of Washington University. She spoke about cancer genomics and recent trends. Heterogeneity was again a key issue, including the role of medication in this process. She discussed an autopsy case study in which multiple metastatic sites were sampled and which showed that some did and some did not respond to targeted therapy. She then went on to speak about co-opting the immune system and the use of personalised vaccines to support this.
Then it was time for Charles Swanton to make the closing remarks and whet the appetite for next year's conference.
There is never enough time to go to everything of interest and parallel sessions, while sensible and practical, can make decision-making difficult. On top of this, many of the consumers have issues with fatigue and we need to take a break every now and then. So here are some of the sessions I would have liked to attend but couldn't …
Peter Sasieni hosted a a session on prevention with Jack Cuzick on chemo-prevention of breast cancer, Peter Rothwell on the effect of aspirin and Tim Lobstein looking at obesity. However, I was committed elsewhere at that time slot.
I would have liked to have attended 'Interventional Oncolgy', which examined trends in the interface between clinical oncology and radiology, but unfortunately it clashed with the debate. I also missed the sessions on 'Cancer Evolution' and 'Biology of the Radiation Response' due to clashes.
I could (just) have squeezed in 'Routes from diagnosis …' but in what was a very full day and evening I really did need those 70 minutes to go back to my room, have a shower, a cup of tea and put my feet up for a bit.
But you can't do everything and it is the sign of a good conference when you leave wishing you'd had more time but knowing that you probably couldn't have taken in much more.
Wednesday, 12 November 2014
Day Three - NCRI Cancer Conference
In order not to end up with too many or too lengthy posts on the conference I'm going to limit myself to writing about just one of Tuesday's sessions in what was actually a very busy day, and to mention in passing the ICPV poster.
The poster (number B146) was about the VOICE course, which has now run twice in conjunction with Barts Cancer Institute, Queen Mary University of London. This year's course was clearly as successful as the one I attended last year. The abstract can be found on the conference web site at: http://conference.ncri.org.uk/abstracts/2014/abstracts/B146.html
More about the VOICE course can be found on the ICPV web site:
http://independentcancerpatientsvoice.org.uk
My highlight session for Tuesday was 'Optimising care for those living with and beyond cancer - where does primary care fit?' In my personal view, this is an increasingly important topic both for cancer services as a whole and at the individual patient level. The session was up against some strong competition in its time-slot but gathered an excellent group of speakers and participants.
Firstly Fiona Walter presented a review of studies and a survey of GP attitudes. She highlighted the point that one in four people living with and beyond cancer face poor health post-treatment.
After that Jon Emery from Melbourne presented a review of primary and secondary care in follow up. There was no difference in wellbeing, recurrence, survival or satisfaction between primary care and hospital follow up methods. However, the shared care model did show some increase in satisfaction.
He then went on to discuss the ProCare Trial; a multi-centre phase II RCT of shared care for prostate cancer patients. What struck me as particularly positive about this trial was that follow up visits were planned with care in advance to result in a structured consultation. When it was experienced, the shared care model was the most popular.
The third presentation of the session was a powerful double act by Alistair Thompson, now at MD Anderson Cancer Centre, Houston (and formerly at Dundee) and Maggie Wilcox of ICPV. Their presentation looked at front line perspectives on care for women treated for breast cancer. It was enhanced by Alistair's perspectives of both UK and US healthcare systems and it focussed on the surgical pathway and follow up, consequences of endocrine therapy and upper limb issues.
Alistair spoke about the use of pain relief to support early discharge from hospital, while Maggie pointed out the need for individualised decisions regarding length of stay, especially for those who live alone or conversely in busy households with young children.
Endocrine therapy issues referred to options for extended therapy and the fact that effective symptom management is an unsolved problem and that there is less than a 50% adherence to tamoxifen for five years. It was also pointed out that many women switching from tamoxifen to an aromatase inhibitor are not informed that the AI remains in the system for a far shorter time than does tamoxifen, so consistency of timing is more important. This does chime with my own experience when I switched. I did my research and so knew that the half-life of exemestane is much shorter than that of tamoxifen, but no-one in my medical team has ever mentioned this.
Minimising upper limb complications was discussed as it is an important issue for may people and in addition to Maggie's input there was an extremely insightful intervention from Margaret Grayson, who pointed out that travelling by air with the frame she needs for her sleeve for lymphoedema can be somewhat challenging.
There was then time for a good number of questions from the floor before the session would up and we dispersed with a good deal of food for thought.
The poster (number B146) was about the VOICE course, which has now run twice in conjunction with Barts Cancer Institute, Queen Mary University of London. This year's course was clearly as successful as the one I attended last year. The abstract can be found on the conference web site at: http://conference.ncri.org.uk/abstracts/2014/abstracts/B146.html
More about the VOICE course can be found on the ICPV web site:
http://independentcancerpatientsvoice.org.uk
My highlight session for Tuesday was 'Optimising care for those living with and beyond cancer - where does primary care fit?' In my personal view, this is an increasingly important topic both for cancer services as a whole and at the individual patient level. The session was up against some strong competition in its time-slot but gathered an excellent group of speakers and participants.
Firstly Fiona Walter presented a review of studies and a survey of GP attitudes. She highlighted the point that one in four people living with and beyond cancer face poor health post-treatment.
After that Jon Emery from Melbourne presented a review of primary and secondary care in follow up. There was no difference in wellbeing, recurrence, survival or satisfaction between primary care and hospital follow up methods. However, the shared care model did show some increase in satisfaction.
He then went on to discuss the ProCare Trial; a multi-centre phase II RCT of shared care for prostate cancer patients. What struck me as particularly positive about this trial was that follow up visits were planned with care in advance to result in a structured consultation. When it was experienced, the shared care model was the most popular.
The third presentation of the session was a powerful double act by Alistair Thompson, now at MD Anderson Cancer Centre, Houston (and formerly at Dundee) and Maggie Wilcox of ICPV. Their presentation looked at front line perspectives on care for women treated for breast cancer. It was enhanced by Alistair's perspectives of both UK and US healthcare systems and it focussed on the surgical pathway and follow up, consequences of endocrine therapy and upper limb issues.
Alistair spoke about the use of pain relief to support early discharge from hospital, while Maggie pointed out the need for individualised decisions regarding length of stay, especially for those who live alone or conversely in busy households with young children.
Endocrine therapy issues referred to options for extended therapy and the fact that effective symptom management is an unsolved problem and that there is less than a 50% adherence to tamoxifen for five years. It was also pointed out that many women switching from tamoxifen to an aromatase inhibitor are not informed that the AI remains in the system for a far shorter time than does tamoxifen, so consistency of timing is more important. This does chime with my own experience when I switched. I did my research and so knew that the half-life of exemestane is much shorter than that of tamoxifen, but no-one in my medical team has ever mentioned this.
Minimising upper limb complications was discussed as it is an important issue for may people and in addition to Maggie's input there was an extremely insightful intervention from Margaret Grayson, who pointed out that travelling by air with the frame she needs for her sleeve for lymphoedema can be somewhat challenging.
There was then time for a good number of questions from the floor before the session would up and we dispersed with a good deal of food for thought.
Monday, 10 November 2014
The Debate - NCRI Cancer Conference II
Picking up where I left off, the motion for debate was "This house believes that the Cancer Drugs Fund has been good for British cancer patients".
A quick bit of (rather over-simplified) background - although the NHS is a national service, each of the individual home nations has its own healthcare policies affecting the way the NH Service is delivered locally. The Cancer Drugs Fund operates in England as a means of improving access to drugs not routinely funded by the NHS. Some of the drugs funded are waiting hopefully for NICE approval, while others have been considered to be too expensive for routine use. There has been quite a bit of controversy over the fund and the press abounds with stories and, at the moment, particularly stories of people in Wales not having access to drugs that might well be available to them through the fund if they lived in England. The Fund has been criticised for funding drugs which NICE has already (and often controversially!) rejected.
So this was an interestingly framed debate.
As someone well used to debate and the putting of arguments for and against a case, attending the debate was an interesting experience…
There were speakers from each of the home nations, two for and two against. The format was an initial setting out of the position with regard the background to the fund and the funding for non NICE approved drugs in each of the four nations, followed by an initial straw poll which resulted in support of the motion. After that Peter Clark of NHS England spoke for the motion followed by Tom Crosby of Velindre NHS Trust (in Wales) speaking against. Next came a time for questions from the floor and then David Cameron (no, not the one from Downing Street, but the David Cameron, from the Edinburgh Cancer Research Centre!) replied for the motion and finally Martin Eatock from the Northern Ireland Cancer Network replied against.
In practice, the only one who really spoke to the motion was David Cameron. The others tended to raise very valid points, but points which were not really "on topic", being more about overall fairness than whether British cancer patients had benefited. They addressed the fact that patients with conditions other than cancer don't have access to specialist drugs funds and discussed that not all the devolved nations have access to the fund or something similar. While it may be unfair that people with other conditions can't access non-NICE approved drugs, that doesn't mean cancer patients haven't benefitted from it! And although Welsh cancer patients haven't benefited, English patients have and English patients are British, while the motion speaks only of British cancer patients, not British cancer patients from all parts of the UK. It was, after all, the choice of those who make healthcare policy in Wales not to have such a fund and they are convinced that a cancer drugs fund should not be introduced in Wales.
As a result, I'm not at all convinced that the vote taken after all four speakers had spoken was actually on the same motion on which the straw poll was taken. The final vote was overwhelmingly against the motion. It would be interesting to see what might happen if the same things were said but the debate was held with a very different audience. Many of the British cancer charities are in favour of the fund.
Still, very valid points were made, whatever the motion might have been and it was all good fun!
I will move onto Tuesday's sessions in the next post.
A quick bit of (rather over-simplified) background - although the NHS is a national service, each of the individual home nations has its own healthcare policies affecting the way the NH Service is delivered locally. The Cancer Drugs Fund operates in England as a means of improving access to drugs not routinely funded by the NHS. Some of the drugs funded are waiting hopefully for NICE approval, while others have been considered to be too expensive for routine use. There has been quite a bit of controversy over the fund and the press abounds with stories and, at the moment, particularly stories of people in Wales not having access to drugs that might well be available to them through the fund if they lived in England. The Fund has been criticised for funding drugs which NICE has already (and often controversially!) rejected.
So this was an interestingly framed debate.
As someone well used to debate and the putting of arguments for and against a case, attending the debate was an interesting experience…
There were speakers from each of the home nations, two for and two against. The format was an initial setting out of the position with regard the background to the fund and the funding for non NICE approved drugs in each of the four nations, followed by an initial straw poll which resulted in support of the motion. After that Peter Clark of NHS England spoke for the motion followed by Tom Crosby of Velindre NHS Trust (in Wales) speaking against. Next came a time for questions from the floor and then David Cameron (no, not the one from Downing Street, but the David Cameron, from the Edinburgh Cancer Research Centre!) replied for the motion and finally Martin Eatock from the Northern Ireland Cancer Network replied against.
In practice, the only one who really spoke to the motion was David Cameron. The others tended to raise very valid points, but points which were not really "on topic", being more about overall fairness than whether British cancer patients had benefited. They addressed the fact that patients with conditions other than cancer don't have access to specialist drugs funds and discussed that not all the devolved nations have access to the fund or something similar. While it may be unfair that people with other conditions can't access non-NICE approved drugs, that doesn't mean cancer patients haven't benefitted from it! And although Welsh cancer patients haven't benefited, English patients have and English patients are British, while the motion speaks only of British cancer patients, not British cancer patients from all parts of the UK. It was, after all, the choice of those who make healthcare policy in Wales not to have such a fund and they are convinced that a cancer drugs fund should not be introduced in Wales.
As a result, I'm not at all convinced that the vote taken after all four speakers had spoken was actually on the same motion on which the straw poll was taken. The final vote was overwhelmingly against the motion. It would be interesting to see what might happen if the same things were said but the debate was held with a very different audience. Many of the British cancer charities are in favour of the fund.
Still, very valid points were made, whatever the motion might have been and it was all good fun!
I will move onto Tuesday's sessions in the next post.
Thursday, 6 November 2014
The 10th NCRI Cancer Conference - the first 24 hours ...
The conference got off to a good start for me on Sunday with the first session I attended, which was 'Communicating risk and uncertainty to patients and the media' by David Spiegelhalter. This entertaining session didn't shy away from tackling some tricky issues, such as the fact that many if not most of the UK public health information leaflets are written for people who … , in the main, don't read such leaflets or want to participate in shared decision making. Which means that in practice the leaflets themselves aren't detailed enough for most of the people who do read them for information and so those people have to seek information elsewhere in order to engage in meaningful shared decision making. He gave examples of good and less good ways to communicate risk, absolute and relative risk, and how a small mis-reading or misunderstanding can distort the message to farcical levels. His concluding remarks included the need to understand and respect your audience.
This was followed by Lois Standt talking about genomically-inspired treatment of lymphoma. For a non-biologist like me, this was slightly more challenging, but thanks to the VOICE course I did in September 2013 I found I could actually follow what was being said.
That evening the NCRI put on a buffet reception for the bursary holders. This gave us an opportunity to meet and greet each other and the NCRI staff before the conference really got going and it ensured that everyone could see some familiar faces as they moved around the venue and the hotel.
There is a generous bursary system for patients and carers, who are known collectively as Consumers. (Not the greatest term, I know, but it is difficult to find anything else that covers this particular group in this particular setting but which hasn't already been used for another grouping.) Our accommodation is booked at a hotel just across the square from the conference venue, so getting to and fro is quick and easy and anyone who needs to can nip back to the hotel for a brief rest period without difficulty. There are NCRI staff on hand to support all delegates, but they seem to be particularly on the look out for the consumers.
Monday started for me with William Breitbart's plenary lecture on psychiatric aspects of palliative care. This session talked about sustaining meaning as a means of enhancing quality of life and presented the intervention called Meaning Centred Psychotherapy.
After that there were three talks under the heading of "10th Conference celebration talks". In the first of these Mike Richards gave an overview of the development of cancer services. I particularly liked his slide showing a jigsaw of the professionals involved in cancer services. It was striking when he commented that there had been an early failure to believe, and a questioning of the validity of, the statistics showing that UK survival was below that of much of the developed world. As we know, there is still a survival gap and in many tumour groups that gap is not closing as survival generally improves. However, at least we have come out of our denial and know we need to work to close the gap.
He went on to describe the period from 2000 to 2012 as an "age of enlightenment", with political will resulting from the actions of patients and charities. He highlighted the role of the registries and other data sets.
Then it was off to the Dragons' Den. This initiative grew out of a session run by Independent Cancer Patients' Voice at a different event a few years ago. The idea is that researchers can come along and meet with some patients and carers who are experienced with input into cancer research in order to get feedback and advice. The researchers on the table at which I sat were requesting input around communication and had some wording on which they wished to consult. It was a good discussion and I think our researchers went away with some useful suggestions and comments.
I then took some time out of the main programme to do a video interview and to look at the exhibition and the first set of posters. After that it was a debate on the Cancer Drugs Fund, which will have to wait for the next blog posting. I'll wrap up this one with a quote from William Breitbart's lecture:
"Hope is the possibility of meaning in an uncertain future."
#NCRI2014
This was followed by Lois Standt talking about genomically-inspired treatment of lymphoma. For a non-biologist like me, this was slightly more challenging, but thanks to the VOICE course I did in September 2013 I found I could actually follow what was being said.
That evening the NCRI put on a buffet reception for the bursary holders. This gave us an opportunity to meet and greet each other and the NCRI staff before the conference really got going and it ensured that everyone could see some familiar faces as they moved around the venue and the hotel.
There is a generous bursary system for patients and carers, who are known collectively as Consumers. (Not the greatest term, I know, but it is difficult to find anything else that covers this particular group in this particular setting but which hasn't already been used for another grouping.) Our accommodation is booked at a hotel just across the square from the conference venue, so getting to and fro is quick and easy and anyone who needs to can nip back to the hotel for a brief rest period without difficulty. There are NCRI staff on hand to support all delegates, but they seem to be particularly on the look out for the consumers.
Monday started for me with William Breitbart's plenary lecture on psychiatric aspects of palliative care. This session talked about sustaining meaning as a means of enhancing quality of life and presented the intervention called Meaning Centred Psychotherapy.
After that there were three talks under the heading of "10th Conference celebration talks". In the first of these Mike Richards gave an overview of the development of cancer services. I particularly liked his slide showing a jigsaw of the professionals involved in cancer services. It was striking when he commented that there had been an early failure to believe, and a questioning of the validity of, the statistics showing that UK survival was below that of much of the developed world. As we know, there is still a survival gap and in many tumour groups that gap is not closing as survival generally improves. However, at least we have come out of our denial and know we need to work to close the gap.
He went on to describe the period from 2000 to 2012 as an "age of enlightenment", with political will resulting from the actions of patients and charities. He highlighted the role of the registries and other data sets.
Then it was off to the Dragons' Den. This initiative grew out of a session run by Independent Cancer Patients' Voice at a different event a few years ago. The idea is that researchers can come along and meet with some patients and carers who are experienced with input into cancer research in order to get feedback and advice. The researchers on the table at which I sat were requesting input around communication and had some wording on which they wished to consult. It was a good discussion and I think our researchers went away with some useful suggestions and comments.
I then took some time out of the main programme to do a video interview and to look at the exhibition and the first set of posters. After that it was a debate on the Cancer Drugs Fund, which will have to wait for the next blog posting. I'll wrap up this one with a quote from William Breitbart's lecture:
"Hope is the possibility of meaning in an uncertain future."
#NCRI2014
Wednesday, 5 November 2014
Six Years to the Day
A short post to mark the fact that six years ago today I received the biopsy results confirming the suspected diagnosis of breast cancer.
A delightful twist of fate means that this anniversary falls around the time of the annual NCRI Cancer Conference, which brings together all those involved in cancer research in the UK and reaches out to researchers beyond the UK. I was fortunate again this year to receive a bursary to attend the conference, which ran from Sunday afternoon and finished at lunchtime today.
It has been an excellent few days (more in later posts) and feels a fitting way to mark the anniversary. Much more satisfying, worthwhile and reassuring than the Pink Trivia associated with October.
A delightful twist of fate means that this anniversary falls around the time of the annual NCRI Cancer Conference, which brings together all those involved in cancer research in the UK and reaches out to researchers beyond the UK. I was fortunate again this year to receive a bursary to attend the conference, which ran from Sunday afternoon and finished at lunchtime today.
It has been an excellent few days (more in later posts) and feels a fitting way to mark the anniversary. Much more satisfying, worthwhile and reassuring than the Pink Trivia associated with October.
Saturday, 1 November 2014
Six Years On ...
I am aware that, once again, I have neglected the blog…
Everyday life has been busy, and navigating that with the reduced energy levels that I have become used to takes up a lot of time. Next week it will be six years since my diagnosis and an altered state of health is something to which I am now reconciled.
Something to which I am NOT reconciled is the assumption on the part of the NHS that my life should still revolve around cancer treatment. Now this is not a cancer-specific problem; presumably it is true for many receiving treatment for long-term conditions. The worst of this relates to medication, because of the regularity of the problem.
I work. I work full time at a job I find highly rewarding and which, happily, is also one that I (like many of my friends and acquaintances all over the world) can say in all honesty is generally beneficial. But I also take medication as a result of the cancer. One aromatase inhibitor, two things to counter at the side-effects of the AI, and one to counter the side effects of the drug to counter the side effects.
My primary care practice won't do online or telephone repeat prescriptions. They won't issue prescriptions for more than a month at a time. At one point I managed to get my GP to agree to giving me 3 month-apart-dated prescriptions at one time but, for some reason I haven't yet discovered, that seems to have broken down. I can't easily use the local pharmacy's collect service because what with work and weekend carer responsibilities, I don't always use the local pharmacy. So - twice a month I am expected to arrive at work late or leave work early in order to take in and collect the prescription! Actually I have taken to filling in the repeat slip and dropping it into the box when I pick up the previous one, and then collecting it weeks later when it is least inconvenient, but it is still a monthly exercise.
At year 6 I am reconciled to the aches & pains, the sleep disturbance, the fatigue, etc. But I resent the assumption that it is okay to expect me to make monthly trips to the surgery at times when I should be at work.
I am aware that there are practices who take a more respectful approach to patients' time and I know people who run such practices. But with so many people now living with and beyond cancer, this more respectful approach needs to become universal.
Everyday life has been busy, and navigating that with the reduced energy levels that I have become used to takes up a lot of time. Next week it will be six years since my diagnosis and an altered state of health is something to which I am now reconciled.
Something to which I am NOT reconciled is the assumption on the part of the NHS that my life should still revolve around cancer treatment. Now this is not a cancer-specific problem; presumably it is true for many receiving treatment for long-term conditions. The worst of this relates to medication, because of the regularity of the problem.
I work. I work full time at a job I find highly rewarding and which, happily, is also one that I (like many of my friends and acquaintances all over the world) can say in all honesty is generally beneficial. But I also take medication as a result of the cancer. One aromatase inhibitor, two things to counter at the side-effects of the AI, and one to counter the side effects of the drug to counter the side effects.
My primary care practice won't do online or telephone repeat prescriptions. They won't issue prescriptions for more than a month at a time. At one point I managed to get my GP to agree to giving me 3 month-apart-dated prescriptions at one time but, for some reason I haven't yet discovered, that seems to have broken down. I can't easily use the local pharmacy's collect service because what with work and weekend carer responsibilities, I don't always use the local pharmacy. So - twice a month I am expected to arrive at work late or leave work early in order to take in and collect the prescription! Actually I have taken to filling in the repeat slip and dropping it into the box when I pick up the previous one, and then collecting it weeks later when it is least inconvenient, but it is still a monthly exercise.
At year 6 I am reconciled to the aches & pains, the sleep disturbance, the fatigue, etc. But I resent the assumption that it is okay to expect me to make monthly trips to the surgery at times when I should be at work.
I am aware that there are practices who take a more respectful approach to patients' time and I know people who run such practices. But with so many people now living with and beyond cancer, this more respectful approach needs to become universal.
Sunday, 11 May 2014
Decision made!
I haven't written anything for rather a long time. Partly this was due to a very busy work schedule, but it was also because I was in the middle of one of those decisions that crop up regularly here in the land of New Normal.
It was a fairly long drawn out process but last month saw the decision made on whether or not I would continue taking the aromatase inhibitor for another five years.
I started the discussion back in December at my Year Five check-up with my surgical team. They referred on to my oncologist and things (slowly) went from there, until eventually, in the middle of last month, the final decision came to me and my GP via the radiographer who did my DEXA scan. Although trials have shown that 10 years of tamoxifen is more effective than 5 years, the trials for the aromatase inhibitors haven't yet reported, so the decision is less obvious here. A further complication is that, as they are 'newer' drugs, less is known about the long-term side effects of the AIs.
One side effect that is well known is that the AIs can have a negative effect on bone mineral density and as my previous DEXA scan had shown osteopenia I have been taking a weekly bisphosphonate. Therefore part of the decision making with regard to continuing with the AI was how well the bisphosphonate was controlling the bone-trashing propensities of the exemestane. The scan I had back in early March showed not just no further deterioration, but an actual slight improvement. It was also an opportunity to discuss options with the radiographer as I can only take the bisphosponate for another 2 years before I have to have a 2 year break from it. I came from that appointment fairly happy that continuing with the exemestane would not be dangerous for my bones and that checking again in 3 years (which would be a year after stopping the bisphosphonate) would be an additional safety measure.
As for other side effects, well although they are definitely present I am coping with them at the moment. While I don't want to take anything for longer than necessary, I am not screaming to give up either AI or bisphosphonate.
The decision is that I will continue with the exemestane, with a view to taking it for another 5 years but able to review that at any time. That feels positive. I will review in the light of trials data and the next DEXA scan results, but I can also go back for a discussion if I feel that side effects are becoming a serious problem for me. And just knowing that I can do that is an encouragement.
The timing was just right as immediately after Easter I went on holiday and it was good to go in the knowledge that this decision had been made. I have come home delightfully chilled and relaxed having been able to put cancer concerns and decisions to one side while I enjoyed a lovely holiday.
It was a fairly long drawn out process but last month saw the decision made on whether or not I would continue taking the aromatase inhibitor for another five years.
I started the discussion back in December at my Year Five check-up with my surgical team. They referred on to my oncologist and things (slowly) went from there, until eventually, in the middle of last month, the final decision came to me and my GP via the radiographer who did my DEXA scan. Although trials have shown that 10 years of tamoxifen is more effective than 5 years, the trials for the aromatase inhibitors haven't yet reported, so the decision is less obvious here. A further complication is that, as they are 'newer' drugs, less is known about the long-term side effects of the AIs.
One side effect that is well known is that the AIs can have a negative effect on bone mineral density and as my previous DEXA scan had shown osteopenia I have been taking a weekly bisphosphonate. Therefore part of the decision making with regard to continuing with the AI was how well the bisphosphonate was controlling the bone-trashing propensities of the exemestane. The scan I had back in early March showed not just no further deterioration, but an actual slight improvement. It was also an opportunity to discuss options with the radiographer as I can only take the bisphosponate for another 2 years before I have to have a 2 year break from it. I came from that appointment fairly happy that continuing with the exemestane would not be dangerous for my bones and that checking again in 3 years (which would be a year after stopping the bisphosphonate) would be an additional safety measure.
As for other side effects, well although they are definitely present I am coping with them at the moment. While I don't want to take anything for longer than necessary, I am not screaming to give up either AI or bisphosphonate.
The decision is that I will continue with the exemestane, with a view to taking it for another 5 years but able to review that at any time. That feels positive. I will review in the light of trials data and the next DEXA scan results, but I can also go back for a discussion if I feel that side effects are becoming a serious problem for me. And just knowing that I can do that is an encouragement.
The timing was just right as immediately after Easter I went on holiday and it was good to go in the knowledge that this decision had been made. I have come home delightfully chilled and relaxed having been able to put cancer concerns and decisions to one side while I enjoyed a lovely holiday.
Friday, 21 February 2014
Difficult Times
It hasn't been the greatest week or so.
A friend from the group with whom I went through treatment died on Saturday night, following a very difficult last fortnight of her life. Another life cut short by this disease, another mother who has left her children far too soon. A life taken by a disease that, according to the recent misguided advertisement by the UK charity Pancreatic Cancer Action, people wish they had. Linda had known from the start that her prognosis wasn't the best, but she also knew that she could well be on the good side of the statistics. After all, some would be so why shouldn't she be one of them? It wasn't to be, but in the meantime she lived her life fully until she became ill last July.
At the end of last week a friend told me that she had just been diagnosed with an aggressive form of the disease. Fortunately her GP was on the ball and made a very swift referral and she has now started chemo.
And that is how it is in the Land of New Normal. We all know that this disease touches so many, but it is heightened for us living here. All we can do is be thankful for the friendship of those who, like Linda, have shared the journey through treatment with us and hope that we can be of some assistance and support to the friends who, regrettably, have to follow us on that journey.
A friend from the group with whom I went through treatment died on Saturday night, following a very difficult last fortnight of her life. Another life cut short by this disease, another mother who has left her children far too soon. A life taken by a disease that, according to the recent misguided advertisement by the UK charity Pancreatic Cancer Action, people wish they had. Linda had known from the start that her prognosis wasn't the best, but she also knew that she could well be on the good side of the statistics. After all, some would be so why shouldn't she be one of them? It wasn't to be, but in the meantime she lived her life fully until she became ill last July.
At the end of last week a friend told me that she had just been diagnosed with an aggressive form of the disease. Fortunately her GP was on the ball and made a very swift referral and she has now started chemo.
And that is how it is in the Land of New Normal. We all know that this disease touches so many, but it is heightened for us living here. All we can do is be thankful for the friendship of those who, like Linda, have shared the journey through treatment with us and hope that we can be of some assistance and support to the friends who, regrettably, have to follow us on that journey.
Monday, 27 January 2014
Why blog?
The recent controversy generated by the criticism by the Kellers of Lisa Adams and her use of social media has led me to pose myself the question "Why blog?".
Now this is a question to which there are a myriad of answers and those answers will vary from one person to another. I can only answer for myself but I suspect that for many of us the answers fall into two streams; why we ourselves blog and why we are pleased that others do. Fo myself, both strands are part of an over-arching answer that includes belonging to a diverse online community.
As I have previously written, I have always used journalling when I have been facing challenges and changes in my life. It is a process that helps me to clarify my thoughts, consider my options and choose my way forward. Blogging is an offshoot of this process. I still journal, so why do I blog?
In part, this (somewhat sporadic!) blog is a place to share my thoughts and see what, if anything, this sparks off in other people. That sits nicely with the clarifying and considering aspect of my journal. Then there is that online community I mentioned above, sharing ideas, ideals and information. And while my motivation is not altruistic, if anyone finds something I have written useful, then that is an added bonus. Certainly I find that I learn from what other people have written. Sometimes I find that in someone else's posts and comments a new light is thrown onto an issue I've been considering, at other times it is good to know others feel the same way I do.
What this blog is not, is a place for me to share my innermost thoughts. That remains the function of my journal and I can't see that changing in the immediate future. It isn't in my nature to be public with things I consider to be highly personal and if I've important news to share (be that positive or negative) I am unlikely to share it here before I've told my nearest and dearest.
That doesn't mean that I don't think others should use blogging, or any other form of social media, in that way. It is simply that it isn't for me. Which brings me back to this diverse and generally supportive community to which we all belong. After all, if any of us don't like reading something, we can always stop reading ...
Now this is a question to which there are a myriad of answers and those answers will vary from one person to another. I can only answer for myself but I suspect that for many of us the answers fall into two streams; why we ourselves blog and why we are pleased that others do. Fo myself, both strands are part of an over-arching answer that includes belonging to a diverse online community.
As I have previously written, I have always used journalling when I have been facing challenges and changes in my life. It is a process that helps me to clarify my thoughts, consider my options and choose my way forward. Blogging is an offshoot of this process. I still journal, so why do I blog?
In part, this (somewhat sporadic!) blog is a place to share my thoughts and see what, if anything, this sparks off in other people. That sits nicely with the clarifying and considering aspect of my journal. Then there is that online community I mentioned above, sharing ideas, ideals and information. And while my motivation is not altruistic, if anyone finds something I have written useful, then that is an added bonus. Certainly I find that I learn from what other people have written. Sometimes I find that in someone else's posts and comments a new light is thrown onto an issue I've been considering, at other times it is good to know others feel the same way I do.
What this blog is not, is a place for me to share my innermost thoughts. That remains the function of my journal and I can't see that changing in the immediate future. It isn't in my nature to be public with things I consider to be highly personal and if I've important news to share (be that positive or negative) I am unlikely to share it here before I've told my nearest and dearest.
That doesn't mean that I don't think others should use blogging, or any other form of social media, in that way. It is simply that it isn't for me. Which brings me back to this diverse and generally supportive community to which we all belong. After all, if any of us don't like reading something, we can always stop reading ...
Saturday, 4 January 2014
New Year Thoughts
Happy New Year!
I have been meaning to post since before Christmas but all the busyness of the season ran away with me and the days slipped past.
On top of which, I had my annual check-up just before Christmas. While I'm pleased to say that I am still in the happy position of there being No Evidence of Disease, I am feeling a bit ambivalent about the way it went.
It started really well, with the registrar who gave me the results of the mammograms the moment that the consulting room door was shut, saying that she didn't want me to worry a moment longer than necessary. This was Year 5 so I was expecting, provided that all was well, to be discharged back into the National Screening Programme and told 'goodbye, good luck, we hope not to see you again but you know where we are if you need us'; and I was excited and really looking forward to that moment. Partly this was because I could view it as a significant step and partly because I could do without the stress of imaging appointments, then a two week wait and the rest of the check-up just before Christmas. But no; I was told that hospital based follow-up would continue with annual mammograms and clinic appointments for 10 years. I'd even checked during the 'grope and poke' that I knew how to do an effective self-examination as I thought this would be a good chance to get my technique checked by someone who really knew what they were doing!
Now, I know full well that in real terms of recurrence the 5 year mark is not particularly significant, but then, especially with ER positive breast cancer, the risk of recurrence continues indefinitely. However I know too that studies show that follow up is actually not a particularly good way of detecting recurrence and gives no survival advantage, while the 5 year period usual in the UK (provided that there are no additional risk factors or ongoing complications) is a compromise as it is thought that women find clinic visits reassuring and this balances out the stresses it can cause. Based on that evidence, many breast units are now moving away from hospital based follow up (but with ongoing open access to the unit) after much less than 5 years for those people with no additional complicating factors, while continuing with the annual mammograms for 5 years or until the woman joins the Screening Programme.
I did raise the issue of continued endocrine therapy for another 2 to 5 years. I had two years of tamoxifen and then switched to exemestane. Following the recent trials results the standard for tamoxifen is now 10 years and while there are no 10 year trials for the aromatase inhibitors, a discussion seemed in order. However, my oncologist wasn't in the clinic and it was clear that they were not expecting anyone to raise this (which I found slightly troubling!). They agreed to write him a Letter so that we could discuss this.
I found myself leaving the clinic unsettled and bitterly disappointed in spite of the initial elation of being told that the mammograms showed no changes from last year's ones. The bitter disappointment has abated somewhat but I'm still unsettled about the fact that they are thinking that I should have a further 5 years of something that has been shown not to be efficacious, while not even discussing 2 to 5 years of something that could well be so.
Hence the ambivalence...
I have been meaning to post since before Christmas but all the busyness of the season ran away with me and the days slipped past.
On top of which, I had my annual check-up just before Christmas. While I'm pleased to say that I am still in the happy position of there being No Evidence of Disease, I am feeling a bit ambivalent about the way it went.
It started really well, with the registrar who gave me the results of the mammograms the moment that the consulting room door was shut, saying that she didn't want me to worry a moment longer than necessary. This was Year 5 so I was expecting, provided that all was well, to be discharged back into the National Screening Programme and told 'goodbye, good luck, we hope not to see you again but you know where we are if you need us'; and I was excited and really looking forward to that moment. Partly this was because I could view it as a significant step and partly because I could do without the stress of imaging appointments, then a two week wait and the rest of the check-up just before Christmas. But no; I was told that hospital based follow-up would continue with annual mammograms and clinic appointments for 10 years. I'd even checked during the 'grope and poke' that I knew how to do an effective self-examination as I thought this would be a good chance to get my technique checked by someone who really knew what they were doing!
Now, I know full well that in real terms of recurrence the 5 year mark is not particularly significant, but then, especially with ER positive breast cancer, the risk of recurrence continues indefinitely. However I know too that studies show that follow up is actually not a particularly good way of detecting recurrence and gives no survival advantage, while the 5 year period usual in the UK (provided that there are no additional risk factors or ongoing complications) is a compromise as it is thought that women find clinic visits reassuring and this balances out the stresses it can cause. Based on that evidence, many breast units are now moving away from hospital based follow up (but with ongoing open access to the unit) after much less than 5 years for those people with no additional complicating factors, while continuing with the annual mammograms for 5 years or until the woman joins the Screening Programme.
I did raise the issue of continued endocrine therapy for another 2 to 5 years. I had two years of tamoxifen and then switched to exemestane. Following the recent trials results the standard for tamoxifen is now 10 years and while there are no 10 year trials for the aromatase inhibitors, a discussion seemed in order. However, my oncologist wasn't in the clinic and it was clear that they were not expecting anyone to raise this (which I found slightly troubling!). They agreed to write him a Letter so that we could discuss this.
I found myself leaving the clinic unsettled and bitterly disappointed in spite of the initial elation of being told that the mammograms showed no changes from last year's ones. The bitter disappointment has abated somewhat but I'm still unsettled about the fact that they are thinking that I should have a further 5 years of something that has been shown not to be efficacious, while not even discussing 2 to 5 years of something that could well be so.
Hence the ambivalence...
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