Breast Cancer Petition to No. 10

Breast Cancer Petition to No. 10

Breast Cancer Petition to No. 10 As many of you will know I have been campaigning for better recognition for women under 50 when concerned about the symptoms of breast cancer. I have lodged an e-petition with No 10 seeking signatures asking the UK Government to enable younger women (ie under age 50) who suspect the symptoms of breast cancer to be referred by their GPs for specialist examination.

The more signatures there are the more something might be done. I have extended the life of this petition for 12 months to allow as long a period as is possible to gather signatures.

I would appreciate your support.

To attach your signature go to:

petitions.pm.gov.uk/JeannieBC/

Many thanks.

Jeannie

Hi Jeannie

I’ve just read your post, profile and pettition - I’m a huge advocate of advancing the cause of younger women wth bc - but am a bit confused about your pettion.

I thought - and I could be wrong - that there was a code of practice or guildelines about referral to a breast clinic. Are you saying you were referred to a breast clinic - but refused a mammogram because you were too young?

I have secondary Inflammatory Breast cancer (IBC) - which doesn’t usually present as a lump - it has other symptoms and is sometimes misdiagnosed. Thankfully I was immediately dxed as my surgeon had experience in IBC.

But just thinking through your issue - one of the messages IBCers want to get out there is you don’t need a lump to have breast cancer (which we are told).

Maybe we can join forces?

I’m off line tomorrow - another day in oncology -but will get back to you when I can.

cheers
Moira

No Breast Lump Hi Moira

You are correct, there are guidelines for referral. However, my symptoms were not in the guidelines. Despite showing symptoms of swelling, thickening and two lumps under my right armpit, anxiety and asking for a mammogram, my doctor would not refer because she said I had nothing to worry about. In other words, she made the decision that I did not have breast cancer.

My symptoms were swelling, thickening and two lumps under my right armpit. These symptoms did not appear in the guidelines at that time as something for referral. However, these are true symptoms of lobular breast cancer - I never felt a lump in my breast at any time. It shocks me to think that I was aware of these symptoms, had anxiety and asked for a mammogram and was refused on three occasions 2001, 2003 and 2004. On each occasion she said I did not qualify for a mammogram because I was 46, 48 and 49 respectively, not 50.

I have been actively campaigning since beginning recovery for these symptoms to be inserted into the SIGN Guidelines (NICE in England). I heard only a few weeks ago that they are now in the Scottish Referral Guidelines. I am at present dealing with SIGN. I have no doubt they will follow suit.

I have been right through the complaints procedure - Ombudsman turned down my case and GMC threw it out. At present I am getting great support from my MSP.

Lobular Breast Cancer is more likely to show up as a thickening of the breast tissue rather that a definite hard lump (taken from Breast Cancer Care factsheet). It appears that these symptoms can often be ignored by GPs - as in my case.

I look forward to hearing from you sometime.

Regards.

Jeannie

Message for Jeannie When I first found a lump in my breast in 1999 I was offered a referral to a breast consultant but was told that this take up to six weeks. At this time I had private care and was able to be seen within a few days.

I was so glad to be told that I had a number of cycts in both breasts but nothing to worry about. Mammogram that day and also all cycts aspirated.

The breast cycts continued and I was seen regularly over the following few years but sadly lost my health care and landed in the lap of the NHS.

I then presented with a new lump in Aug 05 I was offered a scan but no needle test and then sent away with nothing to worry about.

Nex appointment in Nove 05 lump bigger but they tried to send me away having done nothing, I demanded that they do a needle test but was told that I was wasting their time as they were sure it was another cyst and I was a cysty woman, Told to make another appointment for 6 months.

Less than a week later they wrote to me to day they had seen some abnomal cells and wanted to do a core biopsy.

Sadly I was then diagmosed with grade 2 cancer which after a lumpectomy was confirmed that 25/25 lymph nodes involved and lobular cancer. Prognosis not at all what I expected.

Unfortunate;y I was then diagnosed in Sep 06 with wide spread bone mets. I am convinced that had everything been done in August I might not been in this position and might have a longer life to look forward to.

I did not try to get any compensation but would have felt much better if someone said sorry,

I sometimes feel that we are only seen as numbers and not as partners, mothers, daughters and woman who up until this point in there life had a like to look forward to .

I would happlily get involved in anything that might help anyone in this position.

I too live in Scotland and cannot complain about my treatment since diagnosis only the length of time it took them to take me seriosly.

Faffer

HI Jeannie,
i will sign the petition and get everyone i know do aswell. I found a lump and went to see my GP he refered me but it took 4 months to be seen as I was only 24 they thought it would be nothing to worry about of course they were wrong and I had breast cancer stage 3 grade 3 and had spraed to the lymph nodes. I was so angry and am sure if I had been seen sooner my outcome may have been better. Since my dx I have been tring to make other women more aware that they can get breast cancer at any age it is not just an older people who get it. I have always wanted to get involoved in making things be changed and for younger women to be taken more seriouslt so if you need any help from me I would really be keen to help out in anyway I can. Just let me know and I will do all I can
Love Clairemmx x

I was 47 when I was diagnosed with DCIS and invasive breast cancer last year. I was referred to the breast clinic after going to my GP a second time and insisting on a referral. I first went to the GP in May with a lump at the side of my right breast. It was hard, fixed, painless and did n’t change with my menstrual cycle. I’ve no history of cysts and did n’t tend to have lumpy boobs. The Female GP I saw said “I’m sure it’s just a cyst. Keep an eye on it. I won’t refer you to the breast clinic as they get annoyed when we refer people unnecessarily”. I went back after my holiday as I was n’t happy to leave it. My view and that of my partner was how could this woman possibly know what it was from feel alone? Well, the bottom line was she did n’t know. On 1st August I was diagnosed with tumours that totalled 7cm, with only 2mm clearance from my chest wall. Fortunatley there was no lymph gland involvement although I have lost 14 glands as well as my breast. Mastectomy, chemo and rads later, I’m doing well. I’m convinced this GP looked at statistics and dismissed the lump as nothing more than a cyst. I did n’t fit any of the risk criteria i.e, not overweight, don’t smoke, barely drink, I exercise regualrly, no family history, I breast fed my son, good diet and I’m under 50. Well you know what they say–there are lies, damn lies and statistics. God knows where I’d be now if I had n’t gone back. I’ll certainly be signing the petition.

Geraldine

Petition Hi There Geraldine

Good for You!!! Its great to know that there are people out there willing to stick up for us younger women. I was diagnosed in 2004 at 38 years and 2 months and it took me 8 weeks to be seen by a Consultant. When I got there, I insisted on a mammogram due to my own mother having the disease at the same age as me. The diagnosis came through after more tests 2 weeks after initial appointment.

When a young woman’s life is at stake the authorities should make sure that these procedures are done more quickly, as early diagnosis can save lives.

I am aware that there are some health authorities and GP’s don’t like referring young women under 50 to specialists, however I think if more of us make our voices heard, then maybe things can change.

Good luck with the petition and I will be sending the link to everyone I know.

Kindest Regards

Liz xxx

NICE guidelines All publicity is in a sense good publicity but a petition alone, particularly one so vaguely worded, is unlikely to achieve much.

I agree that GPs vary tremendously in their skills in referring women (of all ages…older women often ignored too) on to specialists. They should be doign this already under existing NICE gudelines (and aren’t consistently across the country.)

NICE is currently drawing up new guidelines on all aspects of diagnosis and treatment of breast cancer and I think it is important to influence what goes into these. The breast cancer charities have reps on the consultation committee drawing up the guidelines so Jeannie why not get in touch with BCC and Breakthrough and ask what they are proposing on this issue…

Best wishes

Jane

I am also more than happy to sign the petition and do anything I can to help with this cause. However in my case, the problem wasn’t with the GP. She took my lump very seriously and referred me to the rapid access breast clinic, but the specialist team I saw there relied entirely on ultrasound, with no biopsy of the very definite lump. They sent me home with the assurance that it was nothing to worry about. There was no follow-up. And a year later… Well, you can see from my profile how wrong they were.

Meanwhile a friend at work presented with a lump at around the same time. But she lived around 30 miles from me and was in a different health care trust. Her experience was entirely different - she was biopsied and, even though she was lucky enough to test negative, she had regular follow-up appointments for a few years afterwards. She is younger than me and less likely statistically to have bc, but got the kind of response we would all hope for. It’s that bloody postcode lottery again!

We are constantly told how important it is for cancer to be diagnosed and treated as early as possible, so why are we not being heard, even by the so-called specialists? Must be time for us to start shouting louder!

Mel x

Petition to No10 Hi There

Thought I’d let you know that I have signed the petition and passed it down to all my friends and relations via email. Hope you get a lot of support for your petition.

Good luck

Liz xx

SIGN Guidelines Hi Jane

The petition I have made is one of many other ways I have employed to raise awareness generally. It didn’t take up much time to compose, was easy to send to No 10, and anyone with an e-mail address is able to take part. I took a lot more time with an official complaint to the Scottish Public Services Ombudsman (I live in Scotland), entering every detail of my GPs failure, but to no avail. I even attempted to raise an appeal against the Ombudsman’s conclusion, alongside my MSP and at Holyrood confronting the Ombudsman face to face but got nowhere – yet. General Medical Council – same – much effort, got nowhere – but I haven’t finished with them either. Same again with local Health Board – Forth Valley. In fact I have spent the last twelve months working for breast cancer charity groups, raising awareness about women under 50s getting a raw deal. I would agree with you that one isolated publicity idea (eg petition to No 10) would make little headway, but in fact I have moved in many directions; above are just examples.

I don’t think anyone can ever say which avenue will give the best results.

You should know that I am closely in touch with Scottish Health Executive and SIGN (the Scottish equivalent of NICE). As a result, armpit lumps (‘unilateral axillary lymph node’ is their wording) have just been included in both the Scottish Referral Guidelines and the SIGN guidelines. This type of success gives me huge encouragement psychologically, because I feel I have taken part in improving matters.

I’m on BCC Campaign Group (had a very good meeting at Scottish Parliament recently) and have been invited to attend Macmillan’s Future of Cancer Care workshop next week.

Thanks to all who have supported my petition.

Best wishes.

Jeannie