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.

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.

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.

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.

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 ...

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...

More Conference Highlights

It was certainly a very full few days but not surprisingly, some sessions grabbed me more than others. So here is a little bit more about sessions that were, for me at least, the highlights. I'm sure other attendees would have a different list, but that is all part of a wide ranging programme.

With a subject matter as wide as cancer research it is inevitable that such a conference will have many strands. One such strand working its way through the conference was that of tumour heterogeneity. Nowhere was this complex subject more powerfully yet accessibly expressed than in the plenary lecture given by Charles Swanton.  Most solid tumours display considerable diversity and natural selection throughout their history. The lecture drew on the work of Richard Goldschmidt and Stephen Jay Gould to illustrate the complexities of chromosomal instability and genome doubling as macromutational events giving rise to large evolutionary leaps.

Heterogeneity, both inter and intra tumour, underlines the importance of researchers having access to good quality tissue samples throughout all stages of disease.

Other sessions that made an impression explored the issue of cancer predisposition genes. Douglas Easton spoke about this in relation to breast cancer, building on a session of his I attended at a previous conference. Around 100 common genetic variants have been found to be associated with breast cancer risk and they can combine multiplicatively. Some convey an increased risk (though nowhere near that of the BRCA mutations), while others are associated with lower than population risk.

Nazneen Rahman's lecture (which closed the conference) started from the point that cancer predisposition genes have now been found for over 40 different cancers. She spoke about the move from the linkage research, which led to the BRCA 1 & 2 success, to the candidate gene approach now bearing fruit.  She also pointed out the need for clinical guidelines covering the issue of incidental findings as gene testing becomes more widely available.

Away from these strands I attended an excellent session hosted by Alistair Thompson on developments in breast cancer radiotherapy. This looked at such topics as fractionation, access to intensity modulated radiotherapy and reducing cardiac risk using various techniques.

I went to a proffered paper session on clinical trials, in which 8 presenters each had a 10 minute slot in which to present their findings or ongoing work. These included the Pomi-T Study that found polyphenol rich foods to have a favourable effect on the rise of PSA in prostate cancer (so - meals of broccoli in turmeric sauce, followed by pomegranates and washed down with green tea!). Another trial, presented by Dan Rea, was the now well publicised aTTom trial which has concluded that 10 years of tamoxifen produces further benefit over the (previously) standard 5 years, with the increased benefits being seen after 7 years for recurrence and 10 years for mortality. The differences are regardless of nodal status.

Dan Rea was back for the Dragons' Den session in which researchers presented to members of the Consumer Liaison Group and other patient advocates. This time he was presenting the LORIS trial, which is due to open shortly. This trial will investigate whether women with low risk DCIS can safely avoid surgery. Trial participants will be randomised to standard treatment or active monitoring. For the QoL aspect there will be questionnaires for the first 5 years.

In addition to these sessions there was an exhibition and two sessions of poster presentation - but more of that next time...