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Archive for the ‘Cancer Information’ Category

Last year I reported on a pilot scheme in the UK to deliver an individual information prescription to cancer patients.
This year the pilot scheme is complete and the system (now known as National Patient Information) is ready to roll out to medical professionals in the UK in a two-year program. This is good news as it should improve the consistency of information prescriptions given to cancer patients at diagnosis as well as making the information more tailored to their individual situation. (more…)

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Cancer Fighting Strategies

On this blog our focus is on the friends and family of those who have cancer – their problems and concerns, how they are affected, and how they can help both themselves and their loved ones. Often for friends and family their top concern is how will the person with cancer heal? Whilst healing cancer is not your job, it is understandable that you would want to be aware of the best cancer resources.

Information on the internet can be bewildering, so here is our selection of some resources which may help with support for the person fighting cancer. (more…)

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Books are great. For information, escapism and entertainment. For a person with cancer, the top priorities are information, hope and inspiration. But cancer books are extremely numerous, so how do you choose the right ones to read? The choice of books about cancer can be absolutely overwhelming just because there are so many.
I was asked to compile a list for a website called Flashlight Worthy Book Recommendations. These are the books that are absolutely not to be missed, so these cancer books cut through the confusion. They are absolutely the best books I have come across so far in my years spent working in this area. Click to see my list of Books for your Cancer Journey
Coming soon will be the companion list of books for those of you in the Cancer Fallout Zone.

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It sometimes seems that cancer treatments are very harsh, and cause ongoing health problems (see my last post), so could there really be help for cancer from the humble pomegranate?

New research published this month has shown that compounds found in pomegranates act to slow tumour growth in breast cancers which are hormone dependant. This is research done in a laboratory (published by the American Association for Cancer Research), but the implication is that this could translate into a real help in people with the disease – or even help with prevention.

If you take this research and put it together with previous studies, which showed that drinking pomegranate juice slowed the progression of prostate cancer (another hormone dependant cancer) it does look as though this could really help some people. (Reported in 2006)

What are your thoughts?

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Last week a news item was reported saying that a person’s chance of surviving a year from a cancer diagnosis in the UK varies depending on where they live. This is sometimes referred to as a ‘postcode lottery’. You can read more on this news item here.
These statistics are certainly cause for concern. Where you live should not determine the quality of your care. But is the issue really as clear cut as that? Are the differences a result of the care that is given, or the screening in the area – or are there cultural factors at play, with people in one geographical are more likely to go to the doctor with worrying symptoms than others?
The parliamentary group has suggested that targets for one-year survival which do not take account of age be put into place across the whole of the NHS. It is claimed that this would benefit over-75s in particular. But benefit them in what way?
Unfortunately, I fear that what would actually happen is that, given such a target, there would be an emphasis on prolonging peoples’ lives beyond the one year measure. This could be at the expense of that natural death I was supporting in my last post. Prolonging life can be an expensive business. In our already stretched health service, I would hate to see the focus being put on causing suffering to the dying by extending their lives to meet a target at the expense of helping them die well, or even worse at the expense of other treatments.
Surely a better focus would be to reach the underlying reasons for the geographical differences – which may not be the same in each area. Sure, ask health services to improve their practices where they are not up to scratch – but also make sure that the money does not need to be spent on education for doctors to recognize symptoms, or outreach to communities as to what symptoms require investigation (as in iVan which I mentioned in an earlier post).

How do you think this information can best be used? Do you like the idea of targets? Let me know your thoughts in the replies below, and let’s join the debate.

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It was recently reported that morphine may encourage the spread of cancer – and yet this a drug which can be given to those who have the disease. See BBC News Article As a person who is not medically qualified, I do not have sufficient knowledge to determine how relevant this information is to people who have cancer in general, or any specific person’s cancer. And yet this kind of information is now available to me and every person searching desperately for anything to help themselves or a family member survive cancer and thrive in the future.
But what is the quality of the information? How can you judge? This is a study of whether morphine causes cancer to progress, and the results indicate that it could indeed do so. And yet those commenting on the results say both that further testing will be needed before clinical decisions change, and that there is a drug which could be given in addition to suppress the action. Once upon a time, not very long ago, this kind of information would be available to a few people who were qualified to understand the research and what it meant – and of course they would probably have their own differing opinions and viewpoints. Now such information is all too easy to get through the internet, though unless we have experience of medical language we will probably have to trust others to interpret it for us.
As a family member or supporter, what are you to do with this information if you come across it? Should you speak to the person who has cancer, counselling them to avoid morphine at all costs? (If I was working on getting better from cancer, I think I might find such advice a little wearing after a while, however well-intentioned.) Should you contact their doctors demanding to know whether the person has been given morphine and if so what will change now? Or possibly just throw up your hands and despair of ever understanding all the complicated information?
I think that the right approach is to make the most of the information available by following some research guidelines:

  1. As a friend or family member, only do research if the person who has cancer wants you to do so. Offer, but never insist or send information without permission.
  2. Preferably only one person should do (or at least co-ordinate) the research, and then feed back their findings to the person who has cancer. The person who has cancer can then decide what to ask the medical staff. If this is not possible, the person who has done the research should attend hospital appointments in order to ask any necessary questions. For instance it would be acceptable to ask if there are any alternatives if morphine is suggested.
  3. Question the source of information carefully. Is it unbiased? Who paid for studies, for instance? Was the research well designed (if you cannot tell, see what is being said about it by other parties)?
  4. Limit questions to the medical staff as much as possible to those which are relevant to the person’s current situation and treatment.
  5. Limit time spent researching and/or rely on a small number of trusted sources (the good ones will report on everything significant). Those trusted sources could include ones which are specific to the type and stage of cancer your friend or family member has.
  6. Remember that you can’t be expected to understand everything. As you do more research your level of understanding will probably grow.
  7. Look for positive stories as well as negative or worrisome information. It’s always good to have some hope.

You can find a short list of trusted cancer information websites by visiting Families Facing Cancer.

Please share your stories and feedback below. Has the internet provided information which helped (or didn’t help) your family? Does researching on the internet depress you, or help you feel more in control? Share these or any other thoughts by typing into the comment box. I’m looking forward to hearing from you.

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When a friend or family member is diagnosed with cancer, your life can be thrown into turmoil. To help keep you grounded, stop and consider these 5 points:

  1. It’s not your fault. However tempted you are to believe that the cancer is caused by something you did or failed to do, this is extremely unlikely to be the case. You are not to blame.
  2. It’s not your job to make them well. If you are a parent of a child with cancer, you will be likely to be involved with making decisions about their treatment. In any other case, the person with cancer will choose the best course in consultation with the team of health professionals they want to involve. There is a lot that they can do to affect the outcome of their illness. You may be called upon to offer support and assistance, but getting well is their job and theirs alone.
  3. They are still the same person they were before the cancer. They are facing a challenge and their personality may change as a result – either for a short time or permanently. But they have not suddenly become a lesser person, or a victim.
  4. It is ok (in fact it’s important) to get support for yourself. You may assume that all help and support should be directed towards the person with cancer – but you are also facing a challenge. The more supported you feel, the better you will cope. The better you cope, the more support you will be able to offer in turn.
  5. You can make a difference. Even though you may feel helpless and out of control, there is a lot you can do. The actions you take and the words you say can affect both the person with cancer and other friends and family members positively. You really can help.

These points are taken from the booklet ‘Cancer – Back to Basics : First Questions Answered for Family and Friends’. This booklet is available to download free at the Families Facing Cancer website.

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As I’ve been discussing in previous posts, there are times when someone who has cancer chooses not to pass on all the information about their condition to those around them. Today I’m going to look at why they might do that, what effect it can have, and how the difficulties might be avoided.
These are the main reasons for secrecy that I am aware of:

  • The first is that people may not be ready to face the truth themselves. Telling someone else all about your illness leaves you no room to avoid or lessen the truth. People sometimes cope with cancer by ignoring it as best they can. They may have treatment but otherwise just pretend nothing has changed. So this may be the reason, if someone is downplaying the significance of their cancer, or doesn’t want to talk about it.
  • Another option is that the person who has cancer is depressed. They may feel much negativity about their life and at the extreme may not even be sure they want to survive. In this case, the person may not wish to share much about their illness because it would mean exposing their feelings, and maybe having pressure put on them to accept treatment.
  • There is also the case where someone wants to explore alternative methods of treatment, or simply does not believe that medical intervention is right. In this case, the person might withhold information in the belief that their family’s feelings could sway their decision. (Those who involve family members in their treatment decision are likely to have a greater degree of medical intervention than those who don’t.)
  • Lastly, I think people with cancer often keep information to themselves in the belief that this is a way of protecting those around them from difficult information.

The damage that can be caused by these kinds of secrecy are mostly mental and emotional.
Relationships may be permanently damaged because they cannot flourish in an environment of secrecy.
Cancer can give family members time to adjust to the future loss of that person. But when information is withheld, and the person dies when their family were expecting them to recover, it makes it harder for them to adjust and delays or disrupts the grieving process.
There is also the worry that can be generated. Because I do not know where my mother’s primary cancer was situated, I cannot make sure I guard against that specific cancer myself. This is a worry I have had to deal with.
Then there is the opportunity that cancer gives for growth – the inner strength that people find. Keeping back information denies them the opportunity for that growth.

My feeling is that information must be passed on. Cancer does not only affect one person, and so the information does not belong only to that person. But I do recognise all the above challenges and issues. So I think that time should be spent with each person who is diagnosed, both alone and with their family members. People should be assisted with passing on the information, guided into doing so where they are reluctant, and any fears of pressure being put on them addressed. Those with cancer should be protected from being forced into choices they don’t want to make – which may be made less likely with education of family members.
This kind of support service is already available to some after diagnosis, so please share with me what kind of support you and your family received. I look forward to you joining the debate.

With best wishes,
Anne

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Hi there.

Last time I was talking about the new initiative in the UK of providing information for those with cancer in the form of tailored Information Prescriptions. (To read this post click here).

As promised, this time I am going to begin addressing the issues that are raised by this initiative. As with any new way of doing things, there are always advantages and disadvantages. These need to be weighed up and concerns addressed to ensure the best possible results from the new scheme.

So what are the concerns?

First there is the issue of how they will work in an appointment. How will the health professionals find the time to select the relevant pieces of information, when our health services are already stretched to breaking point? If they are sitting and going through information on a computer, will this lessen the human interaction which is vital to feeling confidence in your doctor (you may have experienced this issue in other situations, where sometimes receptionists seem more interested in their computer screen than in you)? Who will have time to go through the information with you to make sure you understand it and what it means for the person with cancer, and the rest of the family?

Secondly there is the issue of what happens next. I believe that although giving information is a good first step, it’s simply not enough. Information has an emotional impact (as you may notice if you have ever read the side effect warnings which come with most prescription drugs). With cancer this is particularly so. Often information is given slowly, to give time for all concerned to get used to it. But if the prognosis is not good (for instance), giving tailored information may reduce the possibility for hope. This in turn can lead to depression, which has been shown to worsen survival chances. So is there a possibility of too much information? These issues may be able to be addressed, but only by trained professionals having the time to spend with individuals exploring their concerns. This needs to happen all the time, not just if someone asks for that help.

Lastly there is the issue of privacy and confidentiality. There are many cases where someone with cancer chooses not to pass on all the information they have to others in the family. (I believe, though I don’t know for sure, that this was the case with my own mother.) But if someone has been handed a highly tailored set of information about their cancer, and a family member asks to read it, where is their option for keeping things to themselves then? It is all there in black and white and you know that what is there reflects how things are. As a family member you may think ‘Fantastic! I don’t want there to be any secrets.’ But do you have a right to that information? Should you have a right to know? This is like opening a can of worms, because there are many reasons why someone may choose to restrict the information they pass on. I’d love to know what you think. Have you experienced such a situation yourself? Let me know in the comments, and next time I’ll look into what the reasons are for this kind of secrecy, the effects it can have, and what should be done to address the issue.

See you then,
Anne

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Information matters! Research has shown that for women having a hysterectomy, having enough information before the surgery produces a better result. Being informed improves your health!

If ever there was a condition where much information is needed, surely cancer must be it. When someone is diagnosed with cancer, often everyone in the family feels they have stepped into a different world. A different language is spoken, and suddenly processes of the body we rely on every day are called into question. So I was interested to learn that the way information is supplied at the point of cancer diagnosis is set to change in the UK.

In the past, up to 39% of patients have been offered NO written information at the point of diagnosis. Where information is provided, it has been in the form of leaflets or other large chunks of information. This has to cover a lot of different scenarios, and so it may be unclear which parts actually apply to the person, their cancer and their treatment.

The new initiative is known as Information Prescriptions, and there is currently a small test being carried out, whilst all the information is compiled with a view to the system beginning to be available in 2010. In this initiative, the health professionals will compile a set of information which is relevant to the particular person, their diagnosis and agreed or possible treatments. This will be done in the same appointment where the diagnosis is given.

The advantages I see to this system are :

  • There will be less information to go through
  • The information will be available straight away
  • The information will be specific to the actual diagnosis, and situation (as cancer is such a diverse disease)
  • The information will reflect, and be relevant to, any decisions that have already been made
  • Any choices that are still to be made can be shown clearly – with information to help in making them
  • The information may be available in other formats, eg as digital documents, and this may help with spreading it through the family
  • The information can more easily be provided in other languages, for those who do not speak English as their first language, or as audio files for those with restricted vision

I regard it as very positive that the information provided to those with cancer and their families is being thought through so carefully. But of course, there are possible issues that this progress raises, which must be considered. I will begin to cover these in my next post. In the meantime, use the comments facility to let me know what you think. Are you in favour of this initiative? What information were you able to access through the health professionals? How does this compare with how things are done at your hopsital?

Until next time,
Anne

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