I would like to thank all the ladies who supported my Petition on this site. My Petition should now be in the hands of the Policy and Research Team at BCC. I am hopeful that they will find the information both interesting and useful for future campaign work. BCC have said in their letter to me that they are passionately committed to ensuring that every woman has access to the best possible care available and that the evidence on breast screening is continually under review.
As the personal profiles are not available at present and for those that do not know me I feel I should tell you a little about myself. I was “breast aware” and attended my GP on three separate occasions (over a four year period) with swelling, thickening and eventually two armpit lumps. I asked for a mammogram on every occasion and was refused on the grounds that I had nothing to worry about (albeit my symptoms were mentioned in all breast cancer awareness leaflets) and was not illegible because I was not 50. I put myself into the system when I reached 50 and was diagnosed with a Stage 3 localised advanced invasive lobular breast cancer. My life fell apart. I am campaigning to try and make sure no other women suffer the way I have. Any lump in breast or armpit should be considered guilty until proven innocent regardless of age.
Thank you all once again for supporting my Petition. And for those who haven’t seen it and would like to sign, please do so. The more the better.
Regards.
Jeannie
Sorry, I forgot to give the link to my Petition:
petitions.pm.gov.uk/JeannieBC/
Jeannie
Will definately go onto the link and sign up. It is terrible that women have to wait tilll they are 50 to have the first mammos.
A friend of mine was diagnosed four years ago at 43 so i went to my local surgery and asked when i would have my routine mammo, I was told that i had just missed their surgery deadline as it had been in May and I was not due to turn 50 to the June so I would have to wait till i was 53. I was horrified and asked for a private referral to my local private hospital. This cost me £85 which i put on my credit card. They found calcification on my left breast and after a biopsey said it would most prob never lead to anything more but i could have yearly mammos just to keep an eye on it. As you can guess the rest is history, This year i had two different cancers in the same breast, the DCIS had become a grade 1 invasive and a Grade 2 invasive lobular which they knew nothing about was also found. I had my mastectomy June 18th and all lymph nodes removed. I think how lucky i am that i was being monitored but there are so many women under 50 who are told they have to wait, (this is a pet moan of mine) my best friend lost her sister 11 years ago to this bastard disease and she was only 42, 8 whole years away from screening.
I would love a world where all women could be part of a screening programme, very much like the cervical screening. I know this is a long way off and i am living in cloud cuckoo land but how many more beautiful women might be saved from the mutilation and misery this disease causes.
Off now to that link, congratulations for doing something for us all.
Hi Suzzanne
Thank you for signing the Petition. You are a wise woman - wish I had paid privately when I first noticed symptoms. I did try to go privately after my last consultation but was told I needed a doctor’s referral in the first instance, thus making it more difficult. I decided to wait until I was 50 on the knowledge that my GP said I had nothing to worry about. The system needs to be much more accessible. I too would have been nearly 53 had I waited until the next time the Mobile Screening Unit was in my village. This was what my GP suggested. Luckily I didn’t wait otherwise I might not have been around.
A woman/man should be able to ask for further investigation if they are aware of changes within their breasts which are not normal for them or mentioned in breast awareness leaflets. Age should have nothing to do with it. I know it is sometimes more difficult to detect breast cancer in a younger woman but specialist centres have the equipment to cope with this. GPs are only general practitioners and do not have the equipment to do anything other than feel. This is not a safe way of deciding whether a lump is cancerous or not.
Keep well and thank you.
Regards.
Jeannie
I was dx in Jan 2003 with a non palpable 2 cm invasive ductal tumour, with associated intermediate grade DCIS. I had 4/18 lymph nodes positive and had a 2nd surgery to remove them all. FEC chemo and rads. It was found on my 3rd screening mammo, I was 58 yrs.
I do wonder if I had had annual mammos, as my friends in the US have from age 40, the cancer may not have advanced to either invasive, or spread to my axilla. My close friends under 50 now pay each year for private mammos, after my experience.
Currently, I am concerned that at my hospital (a centre of breast care excellence in Plymouth), we only get bi-annual mammos. My excellent surgeon tells me it is because of the risk of getting cancer through radiation. Logically, I cannot therefore understand why we have rads - I had 25 plus 2 boosters - if rx causes bc. As my tumour was non palpable, even by my GP when I got the “recall” letter. I am very concerned that another tumour could appear that is also non palpable, and could be advanced by the time of the 2 yrly mammo. As my hairdresser was last week dx with her second tumour in the same breast, at her 5 yrly mammo (at the same hospital, and same surgeon) I am thinking of going privately.
Goodness only knows what will happen when I come up to 5 yrs next January - will I have to go back to normal NHS 3 yrly screening? That fills me with horror and foreboding.
Perhaps the stats of recurrence could come down if we were monitored more regularly.
Liz.
Hi Liz
It’s very difficult to know if what we are being told is correct or does money come into it? Like you, I only have bi-annual mammograms here in Glasgow. However, Edinburgh and Dumfries & Galloway area get yearly mammograms. Also like you, I have been told it is not good to get “over mammogrammed” (can cause cancer in itself) and every two years is sufficient. If this is the case, why then are some areas getting mammogrammed every year? I’m left wondering if it depends on how much money they put in the pot for mammography and different areas are working with different budgets.
I have my 6 monthly check tomorrow and I am going to ask this question.
Regards.
Jeannie
I shall definitely sign the petition, Jeannie. But my experience shows that what you were doing… detecting the changes in your body yourself, is vital and self examination detects far more tumours than mammograms. I have had cancer 3 times - each time I found the signs and symptoms myself despite (after the 1st time around) a lot of monitoring, scans, mammograms and blood tests which wih each recurrence only found it after I’d found it myself. I also encourage any woman who has detected a change to push not for a mammogram but for a consultation at a breast care clinic - an experienced nurse, yes even the practice nurse is probably better than the doc. … will back you up to see a cancer specialist.
Wishing you well,
Jenny
Jeannie Hi!
I have just signed your petition. I consider myself very lucky indeed, I was picked up by the national screening program and was given my diagnosis 21st Dec 04 ~ ILC.For a couple of months I had noticed a glandy feeling around the time of my period but it went away. I was recalled after my first mamo but they were not unduly worried as nothing really showed at all, it was only when I had an ultra sound that it was realized that all was not well, pathology confirmed this. I went on to have 6 rounds of A&C and was given the option of intensive radiotherapy or a mastectomy. I had already decided on the latter as ILC is difficult to detect. I made the right choice as there was an area of active cancer. I then had radiotherapy, and went on to have a prophylactic mast of the other breast and reconstruction. I don’t know if this would have been picked up before but my surgeon commented that I could have had it (LCIS) for years!
Rosemary
Hi Jenny
Thanks for signing the petition.
I agree 100% with what you say in relation to detecting changes, self examination etc.
My practice nurse would not check my breasts - I did ask her. She said she wasn’t qualified to do so and that I should see my GP. Before getting BC I only knew about mammograms therefore this was my way of asking for further investigation. Breast care nurses/clinics have only come to light now that I know the system.
It sounds like you know your body well. We must all try to do this.
Keep well.
Regards.
Jeannie