Lump in Breast - anyone got any advice please?

[Mojomummy]

on Saturday night I was in the bath reading an article about breast cancer. I decided to examin my & much to my horror, found a lump on my left breast, just above the nipple.

Monday teatime I went to my docs who examined me & identified the lump. She seems to think it's a cyst & has told me to take evening primrose oil for 2 weeks. 800mg a day. If it's not gone, then to go back & I'll be referred to the breast clinic.

Does this seem reasonable ? apparently cysts tend to be hormone related & I recently had a miscarriage. I'm 36.5 & thought I was in good health. There is no breast cancer in my maternal family & I breast feed my dd for 2 years.

oh lalaa im so sorry to hear you had such a bad outcome, but glad its all (slowly) getting back to being bright again.

remember keep your chin up you can work through this, you are a strong person!

all the hugs in the world are on their way to you!

lalaa - did you get yourappointment for chemo?

Yep - am starting on 15 November. Pleased to have the date but now starting to dread what side effects might affect me. Hair loss is going to be the worst one - have appointment with hospital hairdresser to sort out a wig just before my chemo. Makes me feel sick just thinking about it.
On a more positive note, have written to my MP, my local councillor and Patricia Hewitt and a dear friend who is a PR guru has sent out a press release. Have already spoken to two local papers about my case, so if you live in Bristol or Bath keep an eye out for the Bristol Evening Post tomorrow and the Bath Chronicle soon (poss tomorrow also). Just trying to regain some kind of control of my destiny....

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it's 14K for the herceptin for a year, and 4K for the chemotherapy I need to go with the herceptin for four cycles. I'm doing the normal chemo route for 4 cycles, then if the funding comes through, will do 4 cycles of different chemo drug and herceptin. from my oncologist's point of view it's a belt and braces approach - I get 4 cycles of the standard proven therapy, and 4 cycles of the new option. might need to find another 14K for the herceptin for another year too depending on what government policy is by then.

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yes, it is a lot and that's why it's so difficult to get from the NHS. It seems to be a bit of thing at the moment - all the latest cancer drugs cost a fortune and it isn't sustainable.
fund raising events is a good idea. I'm still hopeful that the NHS will come up with the goods and I should know by the end of the month. If it doesn't then we can start looking at raising the money......good idea.

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what do you think of this??!

my story

lalaa, well done for getting the coverage, but I agree that it's awful that you're having to resort to this. It should be made available without any fuss at all. I would have thought that you would be in with a very good chance really, and your PCT must be virtually adjacent to Barbara Clarke's, mustn't it? It would make no sense at all to deny it. Do let us know how this goes, and good luck with your chemo.

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Is there anything that we can do, like writing to govt, your MP, your health authority ? I am very willing to do anything to help.

Lalaa, well done on getting the publicity and I hope you are successful. Will last week's govt announcement of speeding up the process of licensing help, I wonder?

It's disgusting that people are being put in the position of having to virtually beg for this drug. As if they haven't got enough on their plates coping with a serious illness they also have the stresses and strains of trying to obtain treatment. Also, I can't believe Mendip PCT said that "they would consider it if there were any personal or exceptional circumstances which would justify funding the drug, which costs £14,000 a year." Isn't saving a life justification enough?

If anyone wants to help, I think the best thing would be to write to your MP. The situation at the moment is a complete farce and in my opinion actually immoral.
Since the article was published, I have been overwhelmed with offers to help fundraise or just straight offers of cash, so I am looking at whether we can start sooner with us funding the drug until we find out whether the PCT will fund it. It is a gamble, but frankly I can't wait - I need to get this drug doing its stuff as soon as it can - and I'm just grateful that I know the people I do. What is criminal is there are people all over the country like me who don't have those contacts. And just because I might be able to raise the money doesn't mean to say that I'm going to stop fighting for the other people.

Hi lala, just read your post - do you or anyone else on here know how that other woman managed to get this drug ? I'm sure she went to the Human Rights board to get it ? Will have a look to see if I can find any info on it.

here's some info
www.telegraph.co.uk/news/main.jhtml?xml=/news/2005/08/21/ncanc21.xml&sSheet=/news/2005/08/21/ixhome.html

this is the lady I was thinking of....taken from the observer

She said: 'I am not going to stand back and let hundreds of women die. I am legally challenging the NHS because it is limiting my right to life by denying me Herceptin. Under the Human Rights Act everyone has a right to life. If there is a life-saving drug out there, then I and thousands of other women should be able to have it.'

Clark's son, Ash, has an incurable lung disease and is only expected to live into his early twenties. 'If I got Herceptin at the late stages and lived the maximum time possible, that would still only be up to when he turns 16. I always thought my role in life was to look after him until the end.'

Patricia Hewitt, the Health Secretary, personally intervened to ensure that the Nice review of Herceptin was 'fast-tracked', but even so the decision could take more than 12 months. Hewitt said it was possible for the drug to be prescribed if the primary care trust agreed, meaning the decision is a postcode lottery.

The other woman (Barbara Clarke) was eventually given Herceptin after she threatened to take them to the European Court of Human Rights. She (and others around the country also following this path) was arguing that her primary care trust was denying her the right to life.
She was given Herceptin because the PCT decided that she had exceptional personal circumstances. She has an 11 year old foster son who is terminally ill and has no other family to look after him if she dies. Fair play to her - I'm delighted that she got it - but it is difficult for me to get my head around the fact that someone somewhere has to decide whether my circumstances warrant the prescription of this drug.
Until the Government start investing money in research into the prevention of breast cancer (it's all lifestyle related) then they have to pay for the drugs that can cure us.

Tipex
We're doing OK - up and down, you know.
Am getting scared about the chemo now. But I do have a focus too (getting the drug) and we're off for a couple of days on Dartmoor at a posh hotel on Tuesday without dd, which will be good. I'll let you know if I need some help with fundraising. Just waiting to hear from oncologist.

hi laa laa, just wanted to say that if you want to email me please do. i tried to get herceptin from my local nhs hospital but my oncologist flatly refused, this was back in may , before all the press coverage over the summer and recently.I have spoken to barbara clark a few times as i thought about going public but my children were having a hard enough time as it was( they re older than yours and both know that my mum died of breast cancer aged 43 - 2 yrs older than i am now) so i didnt think i could put us through it.If you would like to speak to her let me know.Best wishes for the chemo and getting the herceptin.

waily
i'm going to have a break from the campaigning for a week or so (last week was exhausting) while we get my treatment underway, and then I might come back to you. I completely understand your wish not to publicise your case. I thank god every day that Maddie isn't old enough to understand the seriousness of the situation. As long as I can find the extra strength inside me to campaign, I will, but I do know when to say stop for a while. It got to the stage last week when I felt really stressed and I was just thinking 'what are you doing??'. Supposed to be taking it easy and instead was stressing myself out.....

By the way, if anyone feels inclined, please do write to your MP about this situation. I'm happy for you to cite my case, or you could mention Elaine Barber who is more high profile than me (in Sunday Times today and on BBC website) and further along in the process (has been refused and has lodged papers for judicial review). Or just keep in general - it's just such a terrible situation and given that 1 in 9 of British women get this terrible disease, it is something that unfortunately will touch everyone eventually. Herceptin has the potential to change all of that.

Lalaa, newish to MN and just seen this thread...the whole herceptin injustice thing is outrageous, will glady do what I can, and if/when you need any help fundraising, count me in.
I have several friends who have been through chemo of various sorts: am sure you have been given all the tips and good ideas on coping, but if you need any more - I'm happy to pass on what I can remember.
Also know of two young (ie in early thirties) women who had multiple malignant nodes with their BC....for what its worth, they are actually doing great five years past diagnosis - no recurrence. It can definitely happen. I'm not sure if they both took hercepin - one deifnitely did.

Rooting for you...xxxxElibean