MDS (Myelodysplastic syndrome) Coffee, Cake & Chemo Morning
- Are you a patient with MDS (Myelodysplastic Syndrome)?
- Would you like to learn more about how to live with MDS?
- Would you like to meet fellow patients with MDS?
You are cordially invited to a Coffee, Cake & Chemo Morning
Venue: Seminar Room 3, Cancer Centre, Belfast City Hospital
Date: Wednesday 29 March 2017
Time: 9.30am to 11.30am
If you are planning to attend this event, please contact:
Jessica Murray, Macmillan Haematology Support Worker
Telephone : 028 9504 5471
We want to improve our services through meaningful involvement with patients, service users, family carers and communities. You can get involved :
Tell us your experience at the time of diagnosis of:
- GP and referral to cancer services
- How your diagnosis was communicated to you
- Information and support provided on diagnosis
Venue: Macmillan Support & Information Centre 77-81 Lisburn Road, Belfast City Hospital
Date: Wednesday 23 November 2016
if you are planning to attend this event, please contact:
Janet Morrison, Macmillan Support & Information Centre Manager
Telephone: 02890 638980
Annual Testicular Cancer Health and Wellbeing Event
April is Testicular Cancer Awareness Month and on Monday 11 April the Trust held the third annual "Testicular Cancer Health and Wellbeing Event" in the Cancer Centre, Belfast City Hospital. The event was aimed at men who were diagnosed with testicular cancer in the past year. The event was supported by Friends of the Cancer Centre. It was attended by a 28 men and their guests.
The focus of the health and wellbeing event was survivorship, coping with treatment related side effects and improving quality of life. Patients and their guests were given short presentations by healthcare professionals from the Belfast Trust.
|Three patients also courageously told inspiring stories of their cancer journey, and how they coped both during and after their treatment.
Feedback from those attending was all very postive with comments such as "very interesting and pitched just at the right level", "very helpful, perfect!", "overall excellent, really helpful and glad the event exists", "just keeping doing these sessions, very informative and interesting".
Information about Testicular Cancer
Each year over 2,200 men in the UK are diagnosed with Testicular Cancer, with 60-80 of those cases occurring in Northern Ireland. It commonly affects men between the ages of 15-45, with around 47% of men diagnosed under the age of 35. It is a highly curable disease, with 98% of men cured.
It is important for men to carry out regular self-examination of both testicles as this is the easiest way to identify any potential problems. It only takes a few minutes to perform, best done after a bath or shower. Ideally self examination should be carried out once a month. Signs and symptoms of Testicular Cancer are:
It is important if you have any concerns to get checked by a GP as soon as possible. Do not delay in seeking advice. The following websites are useful sources of information regarding Testicular cancer:
Hear About What's New in Breast and Ovarian Cancer Research
The NI Cancer Research Consumer Forum welcomes you to a free Public Information Evening to hear about what's new in Breast and Ovarian Cancer Research and its impact on cancer treatment and care. The event will be held on Wednesday 13 April 2016, 7pm-9pm, in the Centre for Cancer Research and Cell Biology, Queen's University Belfast, Belfast City Hospital Site. Event flyer Event Programme
It you would like to find out more, or wish to register your interest, please contact Ruth Boyd athe NI Cancer Trials Network, Belfast City Hospital, tel: 028 9063 8468 or email: firstname.lastname@example.org
Vulval Cancer Health and Wellbeing Event
As part of the Transforming Gynae Oncology Pathways Project a greater focus is being placed on the Health and Wellbeing of Gynae Cancer Survivors. To this end a Vulval Cancer Heatlh and Wellbeing Event was held on the 29 April 2015 at Belfast City Hospital, to focus on the needs of patients after diagnosis and treatment for vulval cancer. The event was held to coincide with April being Vulval Cancer awareness month.
The event was attended by patients from throughout Northern Ireland, as treatment for this rare cancer takes place in the Belfast Health and Social Care Trust.
Picture: Margaret McManus, Information Manager, Macmillan Support and Information Centre, Mary McWilliams, Macmillan Support Worker, Julie Clarke, Patient Speaker, Elish McColgan, Macmillan Gynae Oncology Clincial Nurse Specialist and Edel Aughey, Macmillan Service Improvement Lead, NICAN.
Patients, partners and staff heard presentations from Dr Hans Nagar, Consultant Gynae Oncology Surgeon, Elish McCoglan, Macmillan Gynae Clinical Nurse Specialist, Jill Lorimer, Clinical Lead Lymphoedema Service, Thamra Ayton, Clinical Lead Physiotherapist and Margaret McManus, Information Manager at the Belfast Trust's Macmillan Support and Information Centre.
An extremely brave patient Julie Clarke, told her story of living with this condition and its treatment, and the effect it has had on her life...she even took the courageous step to speak with the media. Her story can be read in the Belfast Telegrah.
"only around 33 women hear the words, "you have vulval cancer' in Northern Ireland every year. Seven years ago Julie Clarke was one of them. The 48 year old from Belfast has now taken the courageous step to speak out about her devastating diagnosis in a bid to break the silence and taboo around the rare gynaecological cancer".
Women with vulval cancer consistently say that they had never heard of the condition, and had not considered persistent vulval symptoms to be an indication of anything serious. They often report embarrassment as an issue in delaying them attending their GP.
The risk of developing vulval cancer increases with age. It is becoming more common in younger women, where it is often linked to the human papilloma virus infection (HPV).
The most common symptoms of vulval cancer are:
- Itching, burning or soreness of the vulval that doesn't go away.
- A lump, swelling or wart like growth on the vulva.
- New thickened, raised, red, white or dark patches on the skin of the vulva.
- A sore or ulcerated area on the vulva.
- A mole that changes shape or colour.
- Pain in the vulva or burning pain when passing urine.
These symptoms can happen with conditions other than vulval cancer, but it is important to get any unexplained, persistent symptoms checked by your GP.
For more information please click here
Public Hear about What's
New in Bowel Cancer Research and Care
On 2 December 2014 the public, clinicans and researchers joined with members of the NI Cancer Research Consumer Forum hosting an event to showcase what's new in bowel cancer research and care. Speakers from the Trust and Queen's University Belfast shared new developments across the journey from screening, treatment (including advances in precision medicine), rehabilitation and follow up.
The leading role of bowel cancer researchers based in Belfast was highlighted. This leadership included the European collaboration - the MErCuRIC Study, an FP7 funded clinical trial in advanced bowel cancer. The audience was also encouraged by Norman Surplus, who shared a personal perspective of bowel cancer. Following treatment for bowel cancer diagnosed in 2003, he was inspired to get a gyroplane pilot license and embark on a round the world autogyro flight, which he hopes to complete next year, to raise money for Bowel Cancer UK.
There were also presentations from Cancer Research UK and Bowel Cancer UK, and these charities, along with the Trust's Macmillan Support and Information Centre (MSIC) were among those providing additional information stands and support. Refreshments were supported by MSIC and the NI Cancer Trials Centre (NICTC). For a full summary of the event, please see the news item on the NICTC website.
Cancer break through at Queens University
Women at high risk of breast and ovarian cancer may soon be able to avoid the stark choice of preventative surgery after a research breakthrough. For women carrying the mutated BRCA1 gene, opting to have breasts and ovaries removed has been the only way of reducing the cancer risk.
The research, conducted at QUB's Centre for Cancer Research and Cell Biology (CCRCB) shows that the cells of women with the BRCA1 mutation cannot effectively fight the very high levels of oestrogen that exist in all women's breasts and ovaries. Currently around one in 1,000 women in the UK have the BRCA1 mutation. It exposes them to a 85% risk of breast cancer and 45% risk of ovarian cancer.
“It's the first really credible evidence that oestrogen is driving cancer in women with a BRCA1 gene mutation.”-Dr Kienan Savage Queen's University
As it is hereditary, the mutated gene can devastate families with generations of women at risk of developing breast and ovarian cancer. The only alternative has been preventative surgery, such as a mastectomy (removal of the breast) and oophorectomy (removal of the ovaries).
This can be a difficult choice for young, healthy women, some of whom are still at child-bearing age. But now researchers at Queen's University, Belfast, have said they have come up with a possible alternative.
Dr Kienan Savage, who led the research, said: "This discovery is very significant in the management of women with the BRCA1 gene mutation.
"It's the first really credible evidence that oestrogen is driving cancer in women with a BRCA1 gene mutation.
"Because of this discovery, we now have the opportunity to propose an alternative treatment to surgery. It also opens up the possibility of pausing treatment for a period in order for women to have children, if desired."
The next stage will be clinical trials which could start within a year.
March is Ovarian Cancer Awareness Month!
Ovarian Cancer symptoms usually occur more than 12 times a month. They include:
persistent bloating/abdominal distension
difficulty eating/feeling full
Ovarian Cancer is the 4th most common cause of cancer death amongst women. Each year in the UK 7,000 women are diagnosed with ovarian cancer, and 4,300 women die from the disease. In Northern Ireland, the figures are 160 women diagnosed, and 120 deaths each year. If ovarian cancer is diagnosed at an early stage, however, it has a 90% cure rate.
There is evidence that many women with Ovarian Cancer experience persistent symptoms which are common to the disease, for months before diagnosis. However, because women are not aware of the symptoms of ovarian cancer, and because they don't want to bother their GP, the disease is usually at an advanced stage when diagnosed. In fact almost one third of women are diagnosed in A&E, a figure considered unacceptable by politicians, charities and healthcare professionals.
It is also concerning that women are largely unaware that the risk of ovarian cancer increases with age, and that half of women in a recent survey incorrectly think that cervical cancer screening will detect ovarian cancer. Any woman who experiences new and persistent body changes is urged to visit her GP promptly. Even though it is unlikely to be ovarian cancer, the advice is that you should not ignore persistent pelvic and abdominal symptoms.
The following websites may help:
Cancer Research with the X-Factor!
From the discovery of X-Rays in 1895, to the latest advances in cancer treatment - patients, public and staff attending an information evening listened with fascination to talks on exciting developments in radiotherapy research in Belfast.
‘Cancer Research with the X-Factor’ was a public event hosted by the NI Cancer Research Consumer Forum (NICRCF) on 16 October 2013, to help raise awareness about the work of researchers and staff, working in radiotherapy, and fervently committed to driving advances in cancer care through research. Radiotherapy is an important cancer treatment that currently accounts for 40% of all cancer cures. The audience gathered in the Cancer Centre, Belfast City Hospital, and the Chair of the NICRCF, Margaret Grayson, opened the evening by describing the role of Personal and Public Involvement in cancer research.
Professor Joe O’Sullivan, Consultant Clinical Oncologist, Belfast Health & Social Care Trust (BHSCT)/ Professor of Radiation Biology, Queen’s University Belfast (QUB), described how research-driven innovations in radiotherapy and radionuclide treatments had led to faster availability of more effective treatment for patients in NI. He also acknowledged our debt to cancer patients willing to take part in clinical trials, and to the NICRCF members, for working with researchers and helping to publically profile the value and importance of research for cancer patients. Professor O’Sullivan emphasised that research not only provided value for money, but it was a vital quality driver, and hence core to a high quality health service.
A key theme addressed by the other speakers (Dr Aidan Cole, Specialist Registrar, BHSCT / Clinical Research Fellow, QUB; Dr Gerry Hanna,
Consultant Clinical Oncologist, BHSCT and Dr Suneil Jain, Consultant Clinical Oncologist, BHSCT / Senior Lecturer, QUB) was research involving higher radiotherapy doses tightly targeted to the cancer, while minimising radiation to surrounding tissue. This aimed to introduce even more effective treatment while minimising side-effects and reducing the number of treatment visits patients require.
A key to the success of the research strategy was a multi-professional approach, involving close collaboration of experts in clinical radiotherapy, radiation science and physics, within BHSCT and the Centre for Cancer Research and Cell Biology, QUB. The NI Cancer Trials Centre and research funders were also thanked, including Cancer Research UK, Friends of the Cancer Centre, HSC Research and Development Division and Movember.
Feedback from the event was very positive. The expertise of the speakers and their profound commitment to advances in patient care through research and innovation was evident, as was the interest, enthusiasm and support of the NICRCF and the public. Mr Allister Murphy, a member of the NICRCF commented; ‘From a cancer patient perspective I was amazed to see the huge advances that have been made in radiotherapy technology in only a few years. The influence of research is clearly evident in every aspect of radiotherapy development and credit must go to the research teams and the patients who volunteer. Events like this help the public see the tangible benefits of research.’
To find out more about the NICRCF – click
A website for Cancer Services in the Belfast Trust has been launched. The website is designed to provide information on the services offered by the Belfast Trust to cancer patients and their
. It is also a resource for information on different types of cancer and the treatments available.
Director of Cancer and Specialist Services Mrs Jennifer Welsh said, "The website is a great opportunity for the public to find out more about the work that goes into treating cancer in Belfast and across Northern Ireland."