Thursday, 25 November 2010

The Trials of Trials and Studies

My experience has been that a cancer diagnosis brings a plethora of invitations to participate in studies. Many of these require only a one-off blood sample and/or questionnaire. A few involve some sort of ongoing regular participation.

In the early days, when standing still was difficult enough and moving forward was just a far off ambition, the decision as to whether or not to take part was very straightforward.  If it seemed likely to be of reasonable benefit to me or to future generations, I tended to do it. As a result, I gave a lot of blood samples, filled in numerous questionnaires and was even interviewed about the involvement of friends and family in my decision making processes.

Now that I am a couple of years on (surgery was 2 years ago tomorrow), I'm a bit more discriminating but still happy to participate in studies involving one-off samples or forms that might lead to important work around understanding and preventing breast cancer or in moving forwards after acute treatment. The difficulty for me is with those studies that involve ongoing participation.

I appreciate that much important work can be done only through ongoing studies, but they also serve as an ongoing reminder.  When I'm down to just an annual visit each to surgeon and oncologist, 4 monthly, or even worse 2 monthly, tests of one sort or another are a less than welcome reminder of the problems that could arise. There is the anxiety that always accompanies waiting for results and even more when repeats are needed or problems, however minor, are identified.

At the moment I am (yet again) feeling somewhat ambivalent about the ovarian screening study. The study people are lovely, the work they are doing is extremely valuable and I have already benefitted from it. However, there is a very big "but", and that is that not only does it raise anxiety from time to time, it also makes it hard to get back to everyday life. So far I have had an ultrasound that had to be repeated, a blood test that triggered a request for a repeat and another that was problematic.

The study people generally present repeat requests in a calming way, but the hospital concerned is not always so considerate. Having said that, the hospital letters can, in retrospect, appear a bit comical! I received 3 letters about a repeat blood test.  The first, from the study, said that because of the variation between my first and second set of results, the computer needed another to establish what is normal for me.  Fair enough I thought, once the initial anxiety subsided. Then I had a letter from the hospital saying that because it was increased from the previous level it had triggered a request for a repeat and I might want to discuss the endometrial thickening with my GP to see if a gynae referral was indicated.  This was followed by another letter from the hospital to say that the (same) blood test reading was "the highest it has been for you" and that they needed to repeat it "just to keep an eye on things"! Oh but please don't be alarmed! Not surprisingly, my initial reaction was to be alarmed. One week the computer just needs further data and then two weeks later they need to keep an eye on things.

Then I stopped and thought about it. This was only my second blood test they were talking about - there was a 50% chance of it being "the highest it has been" for me! That third letter may have been alarmist but it was also vaguely silly.

It does, however, illustrate what for me is the drawback of being in the study. It can trigger a series of extra appointments and additional anxiety. As I wailed in an email to a patient friend "I just want my life back" rather than a string of tests and appointments. Fortunately Common Sense GP agreed with what Reassuring Radiologist had said and we decided that there was no need for a gynae referral unless I started getting worrying symptoms.

A part of me wants to come out of the study so that I don't have the additional tests and anxiety that almost certainly hamper my moving forwards. Balanced against that is the fact that I might derive benefit from it (although my risk is now assessed as being much lower than it was this time last year). Also weighing heavily with me is the fact that if people come out of studies like this just because it is stressful it can spoil the study - there is a psychosocial arm of the study looking at the stress element.

I've spoken with people who say that I should just think about what is right for me, weighing up the moving forward issue with the potential benefit without worrying about spoiling the study. I am mindful though that the study is now in its final year so it could be worth hanging in there for a bit longer. After all, finding a way to live with anxiety, appointments, risk and uncertainty is all part of learning how to live in the Land of New Normal.

Saturday, 13 November 2010

And another thing ...

As I mentioned previously, I needed to have a baseline DEXA scan because aromatase inhibitors can cause loss of bone density. So last week I toddled off to yet another hospital for this.  It was one of the easiest and most efficient appointments I have had and, having arrived 5 minutes early, I was actually seen ahead of my appointment time.  The scan itself was painless and quite relaxing, and I was leaving the hospital within 25 minutes of arriving - definitely a record.

Now this was one test/scan about which I was feeling confident.  A few years ago my mother had one and was found to have good dense bones, I do a fair bit of weight bearing exercise and although I bruise horribly when I fall doing things like curling, I've never yet broken anything.  It was therefore quite a shock to receive the letter from my oncologist saying that the scan had shown thinning of the bones in the spine and hip and that I should see my GP to start vitamin D and calcium supplements and discuss a weekly bisphosphonate. As my GP is on holiday I can't even book an appointment yet because of the fact that you can't book more than a certain period in advance (which seems a bit odd when the reason you can't see her before is because she is on holiday.) As I'll be at a conference when booking opens, I don't suppose I'll get one all that soon.  I suppose that gives me more time to research all the possibilities and compile my list of questions.

I did, however, find out that my GP has not received her copy of the letter nor the copy of the scan report. This might not be surprising in light of the fact that the circulation list on the letter names a GP who retired years ago.  This is a little curious because the letter after my check up last month was sent to the correct GP!  What is marginally surprising is that I received my copy of the letter, given that one of the eight mistakes in it is in my address...

This latest news puts me in a bit of a quandary.  Not long after my surgery I decided to cut back considerably on the amount of diary produce I eat and drink.  Although nothing is really proven, there is a theory linking consumption of diary with breast cancer.  While I had no intention of cutting it out completely (I think I may be addicted to cheese), I did decide it would be prudent to reduce it somewhat. Now I am less sure, as it would be a good natural source of calcium. I certainly don't want to go back to tamoxifen, because although some side effects are worse on Aromasin, I really do feel much better in myself on this than I did on tamoxifen.

Now that the initial shock and feeling of "what next?" has worn off, I am very pleased that another benefit of the switch to Aromasin was having the DEXA scan. Were it not for this, I might not have found out until it had progressed from osteopenia to osteoporosis.

Sometimes it seems that part of living in the land of New Normal is that for every few steps forward I take, I end up being blown back a step. The encouragement is that at least I am still gaining ground, just a little more slowly than I would like.

Friday, 5 November 2010

Anniversary Week

Two years ago this afternoon, on Wednesday 5th November 2008 (5th November isn't the sort of date you forget!), I received the phone call that confirmed the diagnosis of breast cancer.  I'd known for a week that they were pretty certain, and now the pathology results had confirmed it.  I was not only strapped into the roller-coaster but it was moving and gathering speed rather alarmingly.

I flung myself into a flurry of information gathering and question listing, even going so far as to google the name of my consultant, just to check up on his credentials.  I was reminded of this approach last week as I prepared for my final appointment with my genetic counsellor.  An appointment that took place exactly two years after being told that they were as certain as they could be pre-biopsy that I had breast cancer.  As usual I had my list of carefully prepared questions with space opposite each one to write in the responses and the discussions we had on the subject.  It all went very well and I emerged feeling good and with a couple of decisions pretty much made.

It was the genetics issue that rather derailed my Grand Plan for Moving Forward of summer 2009.  The fall out from the shock of the September discovery that I met the criteria for genetic testing (when all those around me were being told that they didn't) has meant that I have/will have spent the whole of 2010 waiting for tests or test results of one sort or another.  I don't find this at all easy.  In fact, I hate it when I feel that cancer is dominating my life, although I have hopes that next year the situation will improve and I do now feel that I am moving forwards again.  So the date of last week's appointment seems somewhat auspicious - the start of the next chapter, perhaps?

Another important landmark for me has been my involvement with Breast Cancer Care's "Moving Forwards" initiative for providing resources to those just finishing their hospital-based treatment.  It has given me the opportunity to think through what has happened, how I felt and how I coped, while hoping that some of my experience may be useful to others in a similar position.  For me, moving forwards is involving reflecting on the whole experience so far, trying to integrate it into my life and taking from it any positive points that can help me or other people to reclaim our lives.

This time last year I was in the middle of my first Major Scare, with pain in my affected side when I breathed in.  Imagination ran riot, of course, but it turned out to be just chostochondritis and wore off in a few weeks.

All in all, anniversary week this year has been positive - a good appointment, the thrill and enthusiasm of curling and the fun of the Moving Forwards photoshoot.  It goes without saying that it wouldn't be a cancer event without there being some uncertainty, and I am (of course) waiting for more tests/scans and results.  But when all is said and done I am pleased to be feeling that I am moving forwards again.

To all of my friends in a similar situation - here's to another year!