Have a look at it here:

Many thanks for the fantastic response to our request. You’ve sent us back lots of questionnaires, which are now being used to compile the first booklet on Diagnosis. In February, we’ll be requesting your help again for the next booklet, which will be about Living with a Rarer Cancer.

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Patient Experience Booklets

We are currently putting together a series of booklets in conjunction with the Rarer Cancers Forum, entitled “Patient Experiences”.

As well as containing expert material from psychologists and clinicians, these booklets will contain the experiences of patients, their families and carers. We hope that by sharing these stories, we will be able to illustrate the range of different emotions that people experience at different stages of their journey with a rarer cancer. We hope that this, in turn, will offer comfort and support to the reader, and will help to make them feel that they are not alone, and that all of their feelings are natural.

The first booklet will be about DIAGNOSIS, and I am URGENTLY looking for a group of patients who would be prepared to fill in a questionnaire about their experiences relating to diagnosis.  There is also a questionnaire for friends and family members, who are also deeply affected by a cancer diagnosis.

I’m on a really tight deadline, so hoping to receive some completed questionnaires by the beginning of next week. I’d be really grateful if you and/or some of your family members could take a few moments this week to share some of your experiences with me.

All information will be treated with the utmost confidentiality. We will attach name, age and type of cancer to each patient story, but will happily change these details if required.

I’m trying to complete the first booklet by the end of January, so am up against a tight deadline. The next two booklets, which will address “Living with Cancer” and “The End of Treatment”, will be written over the coming months, and I will also be looking for patients to help me with these.

The booklets will be available as downloadable PDFs as well as hard copies, and they will be available to any individual or organisation who wishes to use them.

We’re hoping that, as well as being a source of comfort and support to patients, these booklets may also help us to raise awareness of some of the inequalities faced by rarer cancers patients.

If you would be happy to help, please contact me on 07595 068998 or maiasissons@me.com and I will send you a questionnaire. The questionnaires are also available to download below. If you click on them once, they should appear in your download folder.

Thank you!

FAMILY QUESTIONNAIRE PATIENT QUESTIONNAIRE

npf newsletter

We’d be grateful if you could let us know what you think of it – please email maia@netpatientfoundation.com

The National Cancer Research Network (NCRN) are  looking to recruit patients and members of the public to join their NCRI Clinical Studies Groups where new ideas for cancer research are developed.

Application packs are available to download from the NCRI website at http://ncrndev.org.uk/index.php?option=com_content&task=view&id=70&Itemid=117 or alternatively by contacting the NCRN Coordinating Centre on 0113 343 2254.

Please note the deadline for return of application forms is 27th January 2010.

“I am a freelance journalist who writes for the women’s weekly market for

magazines like Take a Break, Bella, Pick Me Up and also The Express and

Mirror.

I am currently looking for inspirational women who would like to share

their stories about coping with unusual cancers. This would involve a

telephone interview and payment for the time and trouble. Of course your

charity would also be mentioned within the article.

If you are able to help in any way please do get in touch. Would it be

possible to place a request on your website?  My direct line is: 07957 383

570.

Many thanks for your help and I will look forward to hearing from you

soon,

Shannon Kyle”

NB: The NET Patient Foundation is not associated with Shannon Kyle or the publications she works for in any way.

There’s a great piece in the Daily Mail about NETs – you can view it at http://www.dailymail.co.uk/health/article-1221574/A-tumour-size-marble-sent-body-haywire.html

NB: The NET Patient Foundation does not suggest the chromogranin A test is appropriate for all people.
It is a test that is done when there is a strong suspicion of a carcinoid tumour, this is one type of neuroendocrine tumour. It is one of a number of tests that will be performed to investigate a carcinoid.
The NPF cannot arrange this test for you. The NPF was not party to the contents of the article before its release.

Have a look at it here: