This is a very well written blog about what it is like to be diagnosed with sarcoma. It gives a rare insight from a male perspective. http://darrenevans.weebly.com/blog/diagnosis-and-the-reality-sets-in
NICE has announced a new set of guidelines to let GPS directly order tests and scans for 37 suspected cancers without having to refer to a specialist first. This is in a bid to save lives and get an earlier diagnosis.
The guidelines include suspected sarcoma.
1.11.5 Consider a suspected cancer pathway referral (for an appointment within 2 weeks) for adults if they have ultrasound scan findings that are suggestive of soft tissue sarcoma or if ultrasound findings are uncertain and clinical concern persists. [new 2015]
1.11.6 Consider a very urgent direct access ultrasound scan (to be performed within 48 hours) to assess for soft tissue sarcoma in children and young people with an unexplained lump that is increasing in size. [new 2015]
1.11.7 Consider a very urgent referral (for an appointment within 48 hours) for children and young people if they have ultrasound scan findings that are suggestive of soft tissue sarcoma or if ultrasound findings are uncertain and clinical concern persists. [new 2015]
They are also going to be on The One Show on Wednesday 13th May at 7pm BBC1.
Scanxiety is a very real but less well-known emotional effect of sarcoma. So I’m pleased to see Andy Roast, a chondrosarcoma patient at RNOH, discussing it in detail at Appointment anxiety and completing a ‘cancer circuit’. Well-worth reading.
Sarcoma UK’s Annual Review for 2013/14 has some interesting statistics:
- About 3,800 new cases of sarcoma are diagnosed each year in the UK. These represent approximately 1% of all cancer diagnoses
- 3,330 people are diagnosed with a soft tissue sarcoma (including GIST)
- 500 people are diagnosed with a bone sarcoma
- In general, patients with a bone or soft tissue sarcoma diagnosis tend to be younger than the majority of cancer patients (* is data for England)
- 16% of bone or soft tissue sarcomas are diagnosed in patients less than thirty years of age, compared to around 2% of all cancers*
- 37% of bone or soft tissue sarcoma patients are aged less than 50 years*
- Sarcomas make up 15% of all childhood cancers (0-14 years)
- Sarcomas make up 11% of all cancer diagnoses in teenagers and young people (15-24 years)
Sarcoma UK’s goals are:
- More people will survive sarcoma.
- More will be known about the causes of sarcoma.
- Everyone affected by sarcoma will have access to the best treatment and care.
They also proudly say that
For every £1 spent on Fundraising £6.22 was raised.
78% of income was spent on Charitable Activities
(Awareness; Research; Support & Information)
The NHS has finally granted approval for Stanmore hospital redevelopment. Let’s hope it goes ahead without a hitch.
The Royal National Orthopaedic Hospital (RNOH) and the NHS Trust Development Authority (TDA) are delighted to confirm that the outline business case for the next major phase of the rebuild of the hospital at Stanmore, Middlesex, has been unconditionally approved.
The TDA’s Board approved the business case on 19 March 2015, giving the RNOH the go-ahead to select a final bidder for the rebuild
The drug regorafenib (Stivarga®) was approved last year as 3rd line treatment for patients with advanced Gastrointestinal Stromal Tumour (a rare type of cancer found in the digestive system). Regorafenib is used to treat GIST cancer that is unresponsive to existing drugs imatinib and sunitinib. It has proved very successful, stopping disease growth or causing significant shrinkage, and is better tolerated by patients. Younger patients with a rare form of “Wildtype” GIST respond very well to regorafenib.
The withdrawal of this drug from the Fund means patients whose GIST cancer is inoperable or has spread widely and is not contained by alternatives have no other treatment options available and will die sooner than might have been the case with this drug.
We are calling on the decision to be reconsidered and regorafenib to be reinstated on the CDF list. There is currently no cure for inoperable GIST but targeted drugs like regorafenib enable a patient to live for considerably longer.
Last night’s The One Show did a piece about RNOH Stanmore. If you haven’t seen the state of the buildings they work in then this will amaze you. I’m pleased that they did say how doctors come from all over the world to see the pioneering work done at RNOH.
You can watch the programme for 30 days here, the RNOH piece starts at 2.13mins: http://www.bbc.co.uk/iplayer/episode/b051qz3s/the-one-show-10022015
Funding for a top hospital
Dear Annette Brooke
I am writing to you about the Royal National Orthopaedic Hospital in Stanmore, Middlesex (RNOH). Clearly this hospital is not in your constituency but, as a specialist hospital, it serves the whole of the South of England and hence your constituents like me.
A couple of years ago I was diagnosed with bone sarcoma which is a very rare form of cancer, less than 0.2% of all cancers. Poole hospital, following NHS guidelines, referred me to RNOH.
Like everyone who first travels to RNOH, I was shocked at the state of the buildings. Well, they aren’t really buildings at all, they are Nissen huts. Yet, as I was to discover, this is one of the best hospitals in the country. Even the taxi drivers say it is outstanding, with stories of visiting consultants from all over the world to learn from RNOH! Every patient that I have met have told me how wonderful the hospital is and, on a feedback form, I crossed out the options of “Poor, Good, Excellent” and substituted “Fantastic”.
The care and the service is out of this world, but it is all delivered in ancient buildings which urgently need replacing.
You may have come across publicity such as a recent headline in The Times,
Top hospital facing closure over its ‘third world’ wards. Some funding was approved for new buildings but is now no longer there and the hospital urgently needs the NHS and Department of Health to stop dithering and sort out the necessary funding.
Could I ask you as an MP to push for decisions to be made as soon as possible so that RNOH can carry on giving the superb service that I have received?
Dr Kate Granger, terminally ill with Sarcoma, has given some interviews to the BBC to publicise her #hellomynameis campaign. We have all seen the insides of too many hospitals so know how important a friendly face is.
- Kate was interviewed on this morning’s Today programme: http://www.bbc.co.uk/programmes/b050zkrm at 52:41 minutes;
- and gave a video interview on BBC News: http://www.bbc.co.uk/news/health-31062042;
- a longer and, in some ways more interesting and personal interview, with Kate Granger on the Jeremy Vine show at http://www.bbc.co.uk/programmes/b050xrjq at 1:40:18;
- in her interview with LBC Kate Granger talks about how patients should be given bad news and preferably not when they are on their own.
RNOH Stanmore, where I go, started #hellomynameis in December, and today has spread to Outpatients. They tweeted:
Everybody’s on board with #hellomynameis in our Stanmore outpatients department @RNOHnhs @GrangerKate