Younger women breast cancer awareness- please read and leave your views!

This is an email I have sent to BCC, unfortunately the email has bounced back as undeliverable so I’ve put it here. I thought it would be a good idea to post here to get together a cross section of views from the young women affected by breast cancer, as we have walked the path and are without doubt the experts! Moderators, could you please bring this to the attention of whoever organises new campaigns, perhaps to be considered as an agenda item at your next charity board meeting? I am sure many many younger women would be in agreement that we need to raise awareness in younger women our age, and I hope they’ll pledge their support below. In the meantime, my friends and I have shared the American foundation’s photo on our twitter and Facebook accounts and asked friends to repost them, to spread the word far and wide. It seems fitting for the month of October, and sure beats the h*ll out of those silly “9 inches red bra” type games people play!

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Hi Emma,

I’m one of BCC’s voices, I was diagnosed in march 2010 aged 36. My friends (who I met through your forums) and I agree that there is a very real need to raise awareness with younger women.

Have you seen the young women’s breast cancer awareness foundation website? They are based in the States, but are doing a great campaign with a photo of a younger woman who found her lump whilst breastfeeding her 8 month old baby, and she is holding a sign saying “I am… Not too young”. It’s spot on in raising awareness, there is nothing more hard-hitting than personalising it and showing that normal young women, with none of the publicised risk factors, get this disease.

Coppafeel is great, but we need something for those of us a little older but definitely pre menopausal too. Most of us don’t have the risk factors that are always cited in the press as they are risk factors for post menopausal women. The publicity of these risk factors actually seems to be counter productive with younger women as it leads them to think they are safe, especially when coupled with the age of routine screening. However, breast cancer in younger ladies is usually more aggressive with a worse prognosis, partly because of the nature of the disease and partly because of late detection/action. I know you are a charity with limited means but if we are putting one set of messages out which lull younger women into a false sense of security, then I really think there is a need to redress the balance.  Where is the campaign highlighting that we are more at risk whilst pregnant or in the two years after pregnancy? Where is the campaign that family history at a similar age is a factor, and the parallel campaign that you can get breast cancer as a younger woman even without any of those factors.

I post on the forum as Tors. Please have a look at my thread “how did you find your lump/symptoms?” and you’ll find a wealth of experiences highlighting the gap in the awareness campaign. My friends and I would love to do something to help. We think a Dove soap style campaign showing normal young women who have had breast cancer would be absolutely perfect to highlight the point that younger women get breast cancer too. Maybe Dove, or another corporate partner, could become involved to ease the cost?

Please can you forward this to the relevant person to consider, thanks for reading! I look forward to hearing from you.

Bumping up my own thread to ensure it isn’t lost in the ether…! Please read and don’t just run! Post your comments!!!

Thank you

X

Hi tors

I’ll certainly pass this on. I’ve found the website you’re referring to (I think - is it http://www.youngwomensbreastcancerfoundation.com/index.html ?) but I can’t see any information about the campaign you’re talking about, with the photo and “I’m not too young” sign.

Is there a link you could post here? Or if it’s easier on Facebook, could you share the photo/link on our Facebook page Redirecting... so we can have a look at it?

Thanks

It was on their Facebook page, my technical skills are woeful but I will do my very very best! Thanks Leah, hope all is well with you and your bambino.

Aha- found it Redirecting... (is that it?)

We’re well, thanks. He’s learning to walk & talk so keeping me on my toes!

(Edited to add: I’ve posted about this on the BCC facebook page now Facebook and it’s had a few comments already, so thank you for sharing it.)

Hi
Thanks Leah I just followed the link and posted on the fb page. I agree it is difficult to target all ages in the breast awareness campaigns. I definitely think that those in our thirties and forties miss out a bit.
Coppa feel is a great starting point, but there are women like myself who really needed a kick up the bum in breast awareness.
My grandmother died of BC before I was born, my cousin had BC in her forties, but it still took me nearly 3 months to go to the dr’s after I accidentally found the lump. Who knows how long it had been there because I hardly knew my boobs at all after two babies in two years. I didn’t have a clue there was any risk at this time or with this family history.
I was 38 and busy, cancer wasn’t in the plan. It was something that happened to other people and there were causes that could be avoided, consequently it was never going to happen to me.
Women don’t need to be scared by a BC awareness campaign, they just need to realise that it happens to normal active, healthy women, someone they can relate to. That the biggest chance you can give yourself is finding the lump as soon as you can and getting it checked.
The younger women’s forums are great for meeting women and realising that you are not a freak cos you got BC young.but the sad stories of those who have been lost to this disease since then makes you realise that there is an urgency making women aware.
Bcc does a great job in raising awareness for as many people as possible. I understand that the majority of women are older, that s why we ave screening, but with no screening, younger women have to be self reliant and therefore even more aware and proactive.
I didn’t intend to write so much- old habits die hard.
Nice to hear about your little boy Leah.
Debx

Thanks so much for the link Leah, I’ve just been on BCC’s Facebook page and followed the link and am delighted that it’s already being looked at and shared and ‘liked’. Thank you.

Ps, your twitter account hasn’t joined in the fun yet…

Hi Tors,
Like you I found my BC in early 2010, I was just 40. There was a family history - my mom in her late 40s. Never really thought I would be next. With the stress of changing jobs and the death of my in-laws checking my boobs was last on my list of things to do.
I am up for anything, as I am sure you have seen with me modelling at a lingerie evening. Happy to speak, promote, whatever it takes to help younger women to realise it could be them.
I try my best to keep my non-BC friends aware and with the use of personal experiences it is hard for people to understand. It is hard in this economic climate but I’m sure we can come up with something.
Keep us posted on FB as well.
LJ
xXx

Thanks LJ.

We’ve just got ourselves a RT from Marian Keyes! First of many hopefully. Thank you Marian if you ever read this!

Hi Tors and all

I was just outside the BCC category of ‘young’ but was diagnosed at 46 years, pre-screening age. Although I found a swollen lymph node, followed by a suspect area in my breast the next day, my doctor went through all the risk factors and he said I scored very low - healthy eating, lots of varied exercise, slim, non-smoker, drink a glass of wine about once a year or two. I have no family history of the disease, so again, nothing to alert me there. My cancer is IDC with DCIS, satellite tumours, grade 3, vasular invasion and 5 nodes involved - 1 with extra nodal extension.

I was a bit more aware because of a lady at work who was diagnosed 12 months before me but I didn’t know enough, and as you can see, the cancer had done quite a lot by the time I found it. And I don’t know how long it would have taken me to realise there was a slight thickening of the skin if the lymph node hadn’t been so noticeably large.

I finished my treatment this May but despite all the treatment I live in fear in case there’s something else I’m not aware of and at my hospital they don’t scan unless there’s a specific symptom to check.

I do try to make as many people aware as possible, and have been warning the men at work that they need to be aware also. I mentioned to my brother (a teacher who has a 14 year old daughter) about the BCC booklet aimed at children as I think perhaps schools ought to take this up - they could cover it in Biology lessons or guidance, if they still do guidance at school.
Well done you for your efforts so far on this.
X

October is Breast Cancer Awareness Month and we need to campaign to get the Mammograms brought forward to the age of 40!. Early diagnosis is vital for good results . Fund Raising is okay but we must make sure we order all the free leaflets and publications so that we can give them away to our work colleagues and Friends. The TLC Campaign was excellent , Touch Look Check !!
Keep up the good work girls xxx

Hi ladies. I think there is a very definite gap when it comes to raising awareness and particularly for those in their 30s. Coppafeel do a great job of raising awareness for women in their teens and 20’s, and elsewhere it seems to be that even where the term ‘younger women’ is used, it’s more targeted at those in their 40s, prior to being invited for mammograms. Obviously every age brings its own specific difficulties, but one of the hardest things about my diagnosis at 31, was keeping things as ‘normal’ as possible at home for the sake of my 2 young daughters. In some respects it was a huge help as it meant I wouldn’t allow myself to fall apart, but some days we all need a little ‘hippo’ time (to wallow), and it’s hard to be reassuring for your youngsters, in those moments when you feel at your weakest.

Fabulous idea! I am 42 and diagnosed in June this year. I know I’m on the upper end of the ‘young’ but even at this age there is very little around for people my age. I’ve shared the photo on my FB page and anything that can be done to help, I will do it!

Well done Tors and thanks.

Viv xxx

Hiya,
I fully support this too. I was diagnosed this year at 36. Found the lump myself in the shower. I think there is really something missing for us 30 somethings. I have said this a few times but i am yet to find anyone where i live my age that has had breast cancer and its the single most isolating experience i have ever been through. These boards have been a godsend.
I also agree that Coppafeel do a fantastic job, but the demogrpahic its aimed at is a lot younger than me.
I even raised this issue with work - targetting younger women (i work for a pharmaceutical company who make cancer drugs). Ironically the advice they are given from BUPA is no mammograms for women under 40 as the breast tissue is too dense, so a lot of tumours dont show up. So i would have slipped through the net there anyway. If thats the case we need to take a different tack and raise awareness any which way we can.
I am up for helping out any which way i can.
Rae
x

Hi
I have said before that wouldn’t the smear test be an ideal time for a quick chat to promote breast awareness. I know we are normally not at our happiest on these appointments, but they are regular, one to one and a leaflet could easily be handed out. It’s only one idea, but I think it could be done so easily and would hit the thirty something’s.
Dx

Posted on behalf of new member Nicola

Hi Tors I’m ashamed to say that I didn’t self-examine properly prior to my diagnosis in April 2010. Not because I didn’t think breast cancer wouldn’t happen to me, nor due to lack of awareness really, it’s just I hadn’t made the effort to make regular self-examinations a part of my routine. Women in their 30s/40s tend to be very busy with work, raising a family etc, and I agree that we need prompting to make time to examine ourselves on a regular basis.

I think your Dove-style campaign suggestion is great. I find it annoying when the media focuses on the most ‘common’ risk factors, most of which don’t seem to apply to the young women I’ve met since diagnosis. This focus just serves to remind us that life is even more unfair than we thought it was! The number of well-meaning people who said to me, on hearing of my diagnosis: ‘I can’t believe it - you’re really healthy’.

Midge’s suggestion about increasing breast awareness at smear test appointments is great too. On a related note, I don’t have children myself, so wonder if any info on breast awareness is included with ante/post-natal documentation? Mums’ bodies go through such a lot during pregnancy and childbirth, and I can imagine it must be really hard to decide which body changes are ‘normal’ or ‘abnormal’.

Given its existing support for Breakthrough Breast Cancer, I wonder if the likes of M&S would promote breast awareness alongside its lingerie collection (ie its general collection, not just post-surgery bras). Just a thought.

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Hi, I def think more awareness that this terrible disease can strike at any age, any size, any location, anyone basically. I was 26 when I was diagnosed, turned 27 during treatment. Anyone I know who’s had it was a mum of my friends or an aunt. im the youngest person at all the clinics, chemo ward, hospital appointments by a good 20ish years. I had no family history, no other symptoms, I’ve no other health conditions, I’ve never been in hospital. It just hit one day and no one, GP, doctor friends, could believe that it was breast cancer. I’d like to think going through this had hopefully helped my friends and family are being vigilant and checking. Something bringing it to the forefront might be a good idea, I know the stats are its 1 in 2000 Uni under 29’s so I’m the exception but it does happen.

Hi,
Good to see the discussion going on here. I was diagnosed at 34. I actually found my lump only 5 days after doing a cancer research fundraising event, that was what reminded me to check. I am fortunate in that I was already checking (although probably not as much as I should have) Interestingly, it was raised in one of my ‘Get healthy Stay Healthy’ chats with occupational health at work when I was in my late twenties, I was even given stickers to put in my diary to remind me.
Also in my last smear the nurse did raise the issue of breast examination, she even had a dummy breast that she could put lumps in so people know what to feel for, how hard to press, etc. Unfortunately that was just after I finished my treatment, so I already knew, it had not been mentioned in previous ones at my previous doctors.
Unfortunately I have the BRCA1 gene, but no family history as it passed down the male line from my paternal grandfather.
Jen

Hi Tors,
This is fantastic idea and well done for putting it forward.
I was diagnosed in June this year at the age of 32, grade 2 plus 3 nodes involved. This spurred my sister on to get checked and she too was diagnosed just a week after me with stage 1 breast cancer at just 35 yrs.
I feel really passionate about raising awareness in younger women and wonder why so little is done in the media. My breast cancer nurse said that in the last 10yrs, she has gone from seeing diagnosis in younger women few and far between to it not being unusual nowadays. I wonder what the cause is for such an increase in breast cancer in young women?
I love the Dove idea and thank you for sharing youngwomensbreastcancerfoundation.com/index.html I had though about doing a documentary but afterwards realised that it would be too much for me. What if a bunch of us get together and put a youtube video together? Just a thought. Also, does anyone know where we can get some hard facts on the rate of increase of BC in younger women?
I’ve just started a blog ichoosegiggles.wordpress.com/ originally to keep family and friends in the loop but now posting more publicly in the hope to raise awareness. I’ll be writing something up specifically about bc in young women. I would love you to hear from others experiences on there to share a broader insight to what it’s like living through breast cancer. I’ll let you know when it’s up.
All the best to everyone,
Sarah xox