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exercise and cancer

2011-08-10T17:31:03Z

In addition to my recent post about Macmillan's report, I'd like to say how difficult I have found it to exercise as much as I would like. When I was going through aggressive treatment for anal cancer (carcinoma of the anal canal) back in 1990 I still tried to walk a little whenever I could and feebly exercised my legs when I could not stand. I felt this helped reduce the bloat I suffered and it also helped me feel more in control.

Seven years later I had breast cancer. I had been told that an earlier breast lump was nothing to do with the previous cancer, so when I was then diagnosed with breast cancer assumed this was not anything to do with the anal cancer. But the breast surgeon said a second cancer was 'par for the course' - although later, when I asked an oncologist if a third or fourth cancer would be likely, he said the surgeons's words would have been 'a throw away remark'. I felt I was being fobbed off. I found it very difficult to get open information, especially if it was negative news, as it seemed to be identified as their (doctors' and the profession's) 'personal failure' .

After the first cancer, I suffered great fatigue and lack of stamina, felt the cold like a newborn (or 90 year old) and became extremely sensitive ( I'd had simultaneous chemo-radiation (full pelvic area/anterior + posterior views) and iridium wire implants). This was all ongoing, though I have been a very active cancer activist - doing whatever I could whenever I could. So, after two cancers (plus increasing age!) my energy levels are almost off the scale. Feeling the cold as I do, it's impossible for me to exercise outside in winter. In summer it is often too hot as I have lymphoedema and have to wear thick support tights and pantie girdle. Added to this, I also have bronchiectasis (after not receiving timely antibiotics when I had a chest infection) so my breathing and oxygen levels are affected - all contributing to make walking in hot weather as impossible as it is in cold weather. I also have osteoarthritis (spine), cervical spondylosis (neck) and osteoporosis - adding to the pain from cancers and treatments and minimising my ability to do load-bearing exercise.

BUT, one thing I CAN do is swim! If only I could access warm water! The local pool used to be a cold ordeal but I pushed myself to endure until they dropped the temperature further so I can only get in as far as my knees! They first said it was boiler trouble, then admitted the Council would not allow them to increase the water temperature. I enquired from my GP and also a pain clinic consultant if I could access a therapy pool, but was turned down. I look healthy enough. I have legs and arms that work, to a degree. But no-one can see what the effects of treatment have done to my insides. I have considered joining a hotel's exclusive membership, but am in receipt of Pension Credit and the annual cost plus petrol (24 miles round trip) is really too much (4 kids, 7 grandchildren to support ...!)

Swimming for me means a short gentle length, followed by leg and body exercises, hanging onto the poolside as I get my breath back.

FREE ACCESS TO WARM SWIMMING is what should be available to cancer patients as part of the SURVIVORSHIP PROGRAMME. Surely this would save money in reducing recurrence as well as improve quality of life?

I'd love to hear from other cancer patients if they agree and about their personal barriers to exercise.

to screen or not to screen?

2011-08-10T17:27:00Z

Like most people, I used to think screening for breast cancer was a good thing. Finding cancer 'early' meant it would be small, so could be taken out with minimum treatment and your life was more likely to be saved than if it had grown and spread. Commonsense?

Not so. I've been following the recent research and articles on breast screening over the past two years (even contributing in a small way) because all is not as it seems. Modern screening mammography finds extremely small 'changes' that may never become cancer, but these are treated, mainly with mastectomy.

After a letter to The Times in February 2009 from eminent breast surgeons, epidemiologists, researchers etc the NHS Breast Screening Service (eventually) changed the information given to women invited for screening. But it still fails to give the whole picture - the SCALE of unnecessary harm - that research has shown breast screening actually causes more harm than benefit - although each page is now scattered with pretty flowers. And it still quotes 'numbers of lives saved' (by screening) although without a research reference to back the figures. However, here is recent research which shows screening's true effect on mortality.

Breast cancer mortality in neighbouring European countries with different levels of screening but similar access to treatment: trend analysis of WHO mortality database. Autier, et al. 343:doi:10.1136/bmj.d4411

I've recently contributed a response to the bmj blog of Richard Smith, former bmj editor:

http://blogs.bmj.com/bmj/2011/08/01/richard-smith-my-vain-search-for-a-pro-mammography-speaker/?utm_source=feedbur

There's so much I could post here which shows screening mammography (as opposed to diagnostic mammography used to investigate breast problems) needs to be independently re-assessed.

Here's another article: Let's get frank about breast screening, Cornelia Baines

>http://www.openmedicine.ca/article/view/461/416

Re finding breast cancer early - how can you know when it began to grow? Small is not necessarily good - some breast cancers are more aggressive than others and grow more quickly. Treatment may actually provoke a cancer to grow and can also cause more cancers. It's all a matter of harm benefit ratio - and women need full information in order to weigh the risk and decide for themselves whether screening is right for them. Yes, FULL information. There is now a call for an judicial review of the breast screening programme and a call for an independent body of people to write the information offered to women. Those with vested interests should not decide how much information women want or need.(See The Sunday Times, 31 July 2011, M Baum et al)

Breast cancer charities have successfully lobbied Ministers to increase the screening age at both ends. But they are not willing to discuss recent research. It takes an open mind to look at evidence against what you know (by instinct?)

I believe the present screening programme to be unethical for the following reasons:

Beneficence – it is not beneficial (Breast cancer mortality in neighbouring European countries with different levels of screening but similar access to treatment: trend analysis of WHO mortality database, Philippe Autier et al, BMJ 2011; 343:d4411)

The claim it saves lives is not properly referenced.

Nonmaleficence – it can cause harm by anxiety, investigations, overdiagnosis, and unnecessary surgery and other ‘treatments’ (with major lifelong side effects).

Autonomy – the written information offered is not independent: women should be told the full facts and they are not.

Justice – the money could be better spent elsewhere.

See also the General Medical Council’s Consent Guidance.

I've just received an invitation to mammography screening because I am in the now extended age range. I declined - but I made a fully informed decision. I also objected to the fact I was sent an unsolicited appointment, which put the onus on me to reply, knowing if I did not attend my medical record would be labelled DNA (did not attend). If women were really given FULL informtion (and signposted to unbiased recent research findings etc) they could contact the screening service to make an appointment if they so wished. Invitations to cervical screening could also be seen as coercive in this way and are likely to affect the GP doctor/patient relationship adversely since the GP seeks compliance - and wants to recruit the required percentage of women...

Women need healthcare based on up to date research and facts please. They prefer not to be told what is best for them, but to evaluate and decide for themselves.

I'll post more later - am on granny duty and can hear cool baby coos...

There is no certainty...

2011-08-10T17:23:09Z

'There is no certainty; there is only adventure. even stars explode.' Robert Assagioli.

This summed up my attitude to life after cancer. Whatever time I had left, it was an adventure to be lived to the full.

My blog, http://evenstarsexplode.wordpress.com, began as a support for other cancer patients, but I soon realised it had to be a source of information for other campaigners and people who like to be Informed with a capital 'I'.I hope some people will find it useful.

I've just discovered I can link the blog to other networking sites such as LinkedIn and Facebook, but not sure it will include Macmillan.

Macmillan's recent report Move More shows the importance of exercise

2011-08-10T10:19:53Z

See the Home Page for news of Macmillan's report which shows cancer patients have less recurrence if they exercise and it can also help reduce side effects.The side effects of cancer treatments (radiotherapy, surgery) can damage lymph nodes and patients then have a lifelone risk of developing lymphoedema (a breakdown of a body's lymphatic system which causes fluid to accumulate and swelling).

I wish I had known more about my particular risk of lymphoedema and that immobility while sitting in meetings and associated travel was physically damaging me (ironically while trying to improve health services - part of my 'user involvement'!). I now have midline lymphoedema, and (lifelong) self management means I have to wear support garments (even in hot weather) and do daily simple lymphatic drainage massage for the rest of my life. I also had a year's fight to access MLD (Manual Lymphatic Drainage) treatment, which is still not available in all parts of the UK. While many patients and heatlh professionals alike are still ignorant of the condition.

'Official' literature often refers to lymphoedema 'as a swelling of a limb', or even just 'a swelling of an arm after breast cancer', when it can affect ANY part of the body except teeth, hair and nails. It's worth mentioning here that the risk is lifelong. If you experience any swelling after cancer treatment, it needs to be checked out by those with experience of lymphoedema. Early treatment can be very successful, but it is a progressive condition which, unchecked, can lead to elephantiasis and other distressing conditions.)

Patient safety -sharing and learning

2011-06-29T15:29:32Z

When doctors and nurses speak out about unacceptable practices they often put their careers on the line. Patients and carers, too, can find there are many barriers to speaking out, even within official user involvement.

There is to be a 'Whisteblowers Special' section in Private Eye next week - they had so much material they've had to focus on NHS staff as whistleblowers but are using the website - www.medicalharm.org to spread the idea of patients and relatives whistleblowing too.