New guidelines on the staging of ovarian cancer
New guidelines on the staging of ovarian cancer which include more detailed classifications are being introduced by the International Federation of Gynaecology and Obstetrics.
The new system came into effect on January 1, and will refine the familiar stages one to four, which dates from 1988, with new stage criteria and added classifications. The guidelines also apply to fallopian tube and primary peritoneal cancers.
Although the new system is unlikely to affect women’s treatments, clinicians may now use the new categories to describe their cancers. The system aims to make it easier to compare patients between cancer centres and to reflect increasing knowledge of the disease.
Stage 1: Cancer is limited to the ovaries or fallopian tubes.
1a The cancer is contained on one ovary/tube.
1b The cancer is contained in both ovaries/tubes.
1c The cancer is limited to one or both ovaries or fallopian tubes.
1c1. Limited to one of both ovaries/tubes, cells have leaked into the abdomen during investigative surgery.
1c2. Limited to one or both ovaries, but there has been a rupture before surgery, or a tumour on the ovary surface.
1c3 Cancer cells present in abdominal fluids (ascites) or washings.
Stage 2: Cancer has spread to the pelvis.
2a The cancer has spread to the pelvis, uterus or fallopian tubes.
2b The cancer has spread to other pelvic tissues.
Stage 3: Cancer has spread to the abdominal lining and/or lymph nodes
3a1 Cancer has spread only to the peritoneal lymph glands.
3a1(i) Disease in the lymph glands measures up to 10mm in diameter.
3a1(ii) Cancer in the lymph glands measures more than 10mm.
3a2 Microscopic disease has spread beyond the pelvis and measures more than two centimetres, without affecting the peritoneal nodes.
3b. Visible cancer has spread beyond the pelvis and measures less than 2cms.
3c. Visible cancer has spread beyond the pelvis by more than 2cms, including the surface of the liver and spleen.
Stage 4: Cancer has spread to more distant organs.
4a. The cancer causes fluid between the lung lining and chest wall, a pleural effusion.
4b. Cancer has spread to more distant organs including lymph nodes outside the abdomen.
If you want more information about the new staging system please call the Ovacome support line on 0800 008 7054 to speak to our nurses or email them at firstname.lastname@example.org
The Cancer Drugs Fund review results
The Cancer Drugs fund (CDF) was set up in 2010 to provide funding for cancer drugs which have not been approved for NHS use England by the National Institute of Health and Care Excellence (NICE). This may be because the drugs have yet to be reviewed, or that they have been reviewed, but rejected. Thus far it has provided access for one ovarian cancer drug, Avastin.
In December the CDF met to review some, but not all drugs on its list as well as to consider a number of new drugs that pharmaceutical companies had submitted for listing. For ovarian cancer the results have been very disappointing. Whilst Avastin in the first line setting was not reviewed, and therefor remains available to eligible women, Avastin’s availability for use in relapsed disease has not been approved. Similarly Trabectadin for relapsed disease is not approved. Olaparib for maintenance treatment of women with a mutation of their BRCA gene was withdrawn from the process and is therefore unavailable. It is important to note that these changes are to implemented in March, and that women currently on treatment will be able to complete the planned course.
Whilst Ovacome understand the financial challenges facing the NHS and the issues of drug costs we believe that the current appraisal system is not fit for purpose and needs urgent reform. We are working with other organisations, as well as industry and regulators to understand how fair improvements can be achieved and how women in the UK can access the latest treatments.
There remains the possibility of accessing non listed treatment via individual funding requests, and we will continue to , as we have in the past, promote awareness of these mechanisms to the clinical community.
If you have any questions or concerns please contact the Ovacome nurses on 0207 299 6650
Guide for Younger Women
Ovarian cancer charities join forces to support younger women with ovarian cancer.
Every year 1,000 women under the age of 50 are diagnosed with ovarian cancer. The UK’s four ovarian cancer charities have joined forces to release a new information guide for younger women diagnosed with ovarian cancer.
Ovacome, Ovarian Cancer Action, Target Ovarian Cancer and The Eve Appeal have produced A Younger Woman’s Guide to ovarian cancer to offer advice and support. On top of dealing with the emotions of a cancer diagnosis and the physical effects of treatment, younger women often face additional challenges including the loss of fertility and facing an early menopause, undergoing treatment whilst caring for young children, older relatives or a demanding job and struggling to cope with the financial burden a cancer diagnosis presents.
As fewer women are diagnosed at a younger age, it can be a very isolating experience. The new guide provides crucial information, advice and signposting to help women through the emotional, physical and psychological impact of a cancer diagnosis.
The Younger Women’s Guide features advice and quotes from women who have experiences of living with a diagnosis of ovarian cancer at a younger age and it was written in consultation with health professionals with expertise in treatment and the impact of treatment. It contains up-to-date information on treatment, relationships, fertility and early menopause. There is also support on coping with the impact cancer has on body image and sexuality, and coming to terms with not being able to have children.
Sarah Unwin, who was diagnosed with ovarian cancer when she was 40, features in the guide. She said: “I was delighted that the charities joined together to produce this much needed guide and happy to play a small part in its creation. As well as the specific medical and practical issues which can differ for younger women, it also contains the words and stories of women throughout the UK who have experienced this diagnosis and will hopefully reassure and reduce the isolation of those who read it when diagnosed.
“My hope is that all younger women with ovarian cancer will have the opportunity to read this guide and that in a small but vital way it will help them and their families’ at the most confusing and difficult time of diagnosis and treatment. Two years since diagnosis, I am absolutely convinced of the need to access quality information and to realise the benefits of discovering that you are not alone.”
Target Ovarian Cancer, Ovarian Cancer Action, Ovacome and The Eve Appeal are so pleased to be able to support younger women living with ovarian cancer through this guide.
“This unified approach means that we will be providing younger women with a one-stop shop with valuable information and support and guidance on how best to make sense of their diagnosis and cope with the difficult times they may face.”
To order the booklet call 02072996650 or email email@example.com
Ovacome welcomes the UKCTOCs trial results today, which it hopes will eventually pave the way for the first national screening programme for ovarian cancer, the deadliest of the gynaecological cancers.
Ovacome’s chief executive Louise Bayne says that although the results suggest there could be a benefit to screening, there is a need for more conclusive evidence.
“This suggests a first step to us moving closer to a screening programme, but it is disappointing that we will have to wait another three years before we know for definite if this will be an effective tool in saving women’s lives,” says Bayne.
In the meantime, she says, women need to remain extra vigilant in watching out for symptoms, with this latest indication that if the disease is caught earlier survival can be improved.
Ovacome highlights the main symptoms of ovarian cancer in its easy to remember BEAT acronym: B is for bloating that does not come and go; E is for eating less and feeling fuller quicker; A is for abdominal pain and T is for telling your GP. “We need to get the BEAT message out there so that everyone knows what to look out for,” says Bayne.
Ovacome’s chief medical adviser and Lawson Tait Professor of Gynaecological Cancer at the University of Birmingham Sean Kehoe also cautiously welcomes the findings: “Any study which benefits women with ovarian cancer is always welcome.
The UKCTOCs study was developed to detect whether or not screening resulted in a definitive fall in ovarian cancer deaths. This sadly has not been achieved but still remains a possibility which should become clearer in a few years. Only then can a proper discussion be held as to the real value of screening for ovarian cancer, balancing any benefits against the inherent risks of screening, enabling women and indeed the health services to make an informed decision.”
If anyone is concerned about ovarian cancer call Ovacome’s free nurse led support line on 0800 008 7054.
My Cancer, My DNA
Can you help with a study?
My Cancer, My DNA aims to gather the thoughts and opinions of those affected by cancer on the practical, societal, and ethical implications of the use of whole genome sequencing in cancer prediction, diagnosis, and treatment.
Genetic Alliance UK is currently recruiting cancer patients, and families of patients, to complete a series of online activities that will ask for their opinions on different ethical aspects of whole genome sequencing, including finding out about incidental findings and data privacy. The sessions will take around a half hour a week over six weeks, and can be completed at home at any time convenient to the participant.
You can find out more information here
If you are interested in taking part as an individual then please register online
Please contact Angela Wipperman either by email at Angela.Wipperman@geneticalliance.org.uk
or by phone 020 7704 3141, if you have any questions.
NFGON Annual Conference
SAVE THE DATE
The National Forum of Gynae-Oncology Nurses is pleased to announce their annual conference. Birmingham, UK.
Wednesday, 11th May 2016
Full and exciting program to include presentations on revalidation, research in practice, BRCA testing workshop, emerging management of ovarian cancer in women with BRCA mutation............ full program to follow.
Conference Fee: £75 for non-members
£25 for NFGON members
For more info: www.nfgon.org.uk or firstname.lastname@example.org
The nursing conference takes place the day before BGCS annual scientific meeting which runs 12-13 May 2016.
Spring Newsletter 2016
The spring 2016 edition of the Ovacome newsletter is now available to read or download here
28th April 2016: We are recruiting!
We are looking for a Support Service Nurse to join our small friendly team, based in Old Street. The Support Service Nurse will be the first point of contact for all enquiries made through our support line and online community forum. If you are looking for more information about the role and how to apply please visit: http://www.ovacome.org.uk/about-us/jobs/
29th April 2016: New NICE Guidance
Final guidance issued by the National Institute for Health and Care Excellence on drugs which are used to treat advanced recurrent ovarian cancer has reduced an already limited number of options for women and their doctors.
The NICE final guidance on its multiple technology appraisal of a group of five drugs used to treat advanced recurrent disease was published on April 27, and does not recommend three of the five.
NICE looked at: topotecan (Hycamtin), pegylated liposomal doxorubicin hydrochloride (PLDH/Caelyx), paclitaxel (Taxol), gemcitabine (Gemzar) and trabectedin (Yondelis) and is now recommending these options to treat recurrent ovarian cancer:
- Paclitaxol combined with platinum or on its own
- PLDH (Caelyx)
- PLDH (Caelyx) in combination with platinum
The following drugs are not recommended for treatment of the first recurrence of platinum-sensitive ovarian cancer:
- Gemcitabine in combination with carboplatin
- Trabectedin in combination with PLDH (Caelyx)
Women who are being treated with the drugs which are not recommended by NICE should be able to continue with their treatment if it was started before the new guidelines were published, until they and their doctors think it appropriate to stop.
You can find the NICE final guidance here https://www.nice.org.uk/guidance/TA389
If you want to discuss how the recommendations affect you please call the Ovacome support line on 0800 008 7054
1st June 2016: Summer Newsletter 2016
The summer 2016 edition of the Ovacome newsletter is now available to read or download here
1st September 2016: Ovacome supporting women for 20 years.
Please share our film, so we can reach everyone affected by ovarian cancer.
SEPT 2016: Younger woman’s guide wins British Medical Association Patient Information Award
Ovacome is extremely proud to announce that A younger woman’s guide to ovarian cancer,
produced together with Ovarian Cancer Action, Target Ovarian Cancer and The Eve Appeal has been highly commended in this year’s British Medical Association (BMA) Patient Information Awards
. We also came second in the long term conditions category.
Every year 1,000 women under the age of 50 are diagnosed. On top of dealing with the emotions of a cancer diagnosis and the physical effects of treatment, younger women often face additional challenges including the loss of fertility, facing an early menopause, undergoing treatment whilst caring for young children, older relatives or a demanding job and struggling to cope with the financial burden a cancer diagnosis presents.
A younger woman’s guide to ovarian cancer
provides crucial information, advice and signposting to help women through the emotional, physical and psychological impact.
A younger woman's guide to ovarian cancer
features advice and quotes from women who have experiences of living with a diagnosis of ovarian cancer at a younger age and it was written in consultation with health professionals with expertise in the impact of treatment.
Sarah Unwin, who was diagnosed with ovarian cancer when she was 40, features in the guide. She said: “I was delighted that the charities joined together to produce this much needed guide and happy to play a small part in its creation. I’m delighted to see it has won this award.”
21st October 2016: Autumn Newsletter 2016
The autumn 2016 edition of the Ovacome newsletter is now available to read or download here
8th November 2016:
The Scottish Medicines Consortium (SMC) has today (Monday 7 November) published advice accepting Olaparib (Lynparza) for routine use in NHS Scotland.
Olaparib (Lynparza) was accepted to treat a rare type of incurable ovarian cancer. It was considered through the SMC’s Patient and Clinician Engagement (PACE) process, which is used for medicines that treat end of life and very rare conditions. Through PACE, patient groups and clinicians highlighted that patients tend to be younger women who may have significant family and work commitments. This diagnosis is often made at an advanced stage and there are currently no other treatment options available. Olaparib is the first maintenance treatment for ovarian cancer, delaying time to chemotherapy and potentially offering increased survival benefits. As an oral treatment, it also reduces the number of hospital visits for women.
Taken from the SMC November 2016 decisions news release webpage.
13th Feb 2017: Spring Newsletter 2017
The spring 2017 edition of the Ovacome newsletter is now available to read and download here.
This edition discusses our upcoming activity for Ovarian Cancer Awareness Month and how you can get involved to raise awareness.
28 February 2017: In the News, Blood test could help early detection of ovarian cancer
Ovacome is very pleased that research findings show a CA125 blood test every four months with an annual transvaginal ultrasound improves the early diagnosis rate for women who are BRCA positive and so at higher risk of developing ovarian cancer. This takes us towards a positive case for an NHS ovarian cancer screening programme.
The news comes from the UK Familial Ovarian Cancer Screening Study (UKFOCSS) a long term study which includes Ovacome on its steering committee.
These results, published on 27 February, show a potential way for BRCA positive women to manage their risk of developing ovarian cancer while delaying risk-reducing surgery.
It is still not clear whether screening will improve cancer survival rates. The ongoing UK Collaborative Trial of Ovarian Cancer Screening Study (UKCTOCs) continues to research this.
28 April 2017: MPs and cancer charity Chief Executives send letter to all CCGs regarding earlier diagnosis
All cancer-specific All-Party Parliamentary Groups, Parliamentarians, and 40 cancer charities have joined forces to write to all CCGs in England to highlight the important role they have in improving one-year survival rates, and to offer support in helping to achieve this. You can read the letter here
General election 2017
General election 2017 - Help us to put ovarian cancer on the political agenda this election.
Ask your candidates
We are calling our members to ask their parliamentary candidates what they will be doing if elected to raise the profile of ovarian cancer.
We would like members to ask what their potential MPs will be doing to:
1- Raise awareness of ovarian cancer amongst the general public and GPs
2- Improve early diagnosis of ovarian cancer
3- Improve access to treatments and BRCA testing
4- Improve post treatment care and support
5- Introduce greater transparency and reassurance over patient involvement in England, Wales and Scotland’s cancer strategy.
Write to your local newspaper. Parliamentary candidates often read their local paper to gather what is important to their local constituents. Take this opportunity to add public pressure to your potential political candidate to ensure ovarian cancer is on the political agenda.
3 June 2017: New trial drug shows promising results
A trial for drug ONX-0801 has shown "very promising" results in with ovarian cancer. A small clinical trial saw tumours shrink in 7 of the 15 women taking part. ONX-0801 mimics the ability of folic acid to latch on to cancer cells. Blocking this action causes damage to the DNA and cell death.
The researchers hope to carry out bigger clinical trials as soon as possible to confirm the effect of ONX-0801 and that it is safe, as well as which women with ovarian cancer it can effectively help to treat.
15/06/2017 – Ovacome unveiled results of the biggest patient survey of its kind.
Although almost nine in 10 women diagnosed with ovarian cancer suffer from bloating, in most cases this is not the symptom which prompts them to see their GP.
Only 20% of women who suffer from bloating seek medical help for this symptom. This is despite a persistently bloated stomach being one of the key symptoms of ovarian cancer.
Ovacome unveiled results of the biggest patient survey of its kind, today at the British Gynaecological Cancer Society’s Annual Scientific Meeting in Glasgow. The Study of 324 women found that despite bloating being the most common symptom, women are more likely to seek medical help when they have abdominal pain (47%), or a change in urination (25%).
With average age of the women taking part in the survey being 56 years old, the charity believes that participants may have dismissed bloating as being a natural body change associated with menopause.
“We know that bloating, when it is persistent, is an important indicator of ovarian cancer and yet it seems there is still a big awareness job to be done to get that message across to both women and their GPs, “says Ovacome CEO Louise Bayne.
“It’s understandable why women, who generally will suffer from bloating from time to time and their GPSs, who typically see just one case of ovarian cancer every five years, might not link it to the disease.
“But if bloating doesn’t come and go, everyone really needs to be aware that it could be something that needs further investigations,” she adds.
Women who went to their GP with bloating in 2016 had to wait an average of 22 weeks for a referral to a gynaecologist specialist. This compared with a 17 week wait if they complained of abdominal pain. In addition, the number of women being incorrectly referred to gastroenterology increased from 20% in 2006 – when the original survey was held – to 26% in 2016.
“We aim to use the results of this survey to highlight to women and their health professionals that bloating should be considered as an important indicator or potential ovarian cancer,” says Bayne. “Ovarian cancer needs to be ruled out early on, instead of wasting time treating the symptoms as being Irritable Bowel Disease or the menopause.”
The charity will continue to spread awareness of its BEAT acronym of the main symptoms of the disease: B is for bloating that does not come and go; E is for easting less and feeling fuller quicker; A is for abdominal pain and T is for telling your GP.
Ovacome will place the results of the survey at the centre of its awareness work to inform women and the medical community about ovarian cancer, the fifth most common cancer for women in the UK, with 7,300 new cases diagnosed every year.
Read the full press release here
10th July 2017: There’s a new edition of A Younger Woman’s Guide to Ovarian Cancer.
There’s a new edition of A Younger Woman’s Guide to #ovariancancer
! Written in collaboration with Target Ovarian Cancer, The Eve Appeal and Ovarian Cancer Action. You can read and download the guide here
We are also happy to put a copy in the post, please contact us on 0800 008 7054 to order your hard copies.