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Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

27 REPLIES 27
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

I have no idea about the page, but as a recent diagnosee (is that a word?) I thought I would say "hello" Smiley Happy  

Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi
Is this page still running? Can t see a recent post? Would be great to talk to other younger women with breast cancer.
Thanks

Kitty
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi ladies,

I thought I'd write to you on here as I'm a little scared. Found a area of thickened tissue in my right breast, near my armpit, last year and was referred to the beast clinic. Was sent home after an ultrasound where the doc said it was just excess breast tissue.

fast forward a year I found a new lump on my right breast and I am now being sent for u/s and biopsy as they also found my lymph nodes are swollen in the area where the thickened tissue is.

Sorry for posting such a long message. I just need to talk to people who have been through these tests as I have no idea what to expect and I haven't spoken to my fiancé or my family yet.

Also apologies if I'm writing on the wrong forum, I have no idea what I'm doing. I'm turning 26 soon so was looking to ask people of my age group about their experiences.

Thanks x

Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

I just wanted to say thank you to the amazing SBC ladies who have been in touch with me in the last 10 days since I was referred for an MRI for a possible bone met picked up on bone and CT scan. I heard today it is infact benign. Relieved and happy but so grateful for your words of support and totally in awe when I read your stories of your strength. So am at beginning of my BC journey and still along way to go but If things don't work out to plan I feel really reassured that there is wonderful bunch of women on here who will support.
Thank you so much - will obviously be staying on the network. Good luck with all our treatments. xxxx
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi JenJen, this really surprises me. Can you message YBCN again please and explain that you spoke to me on the BCC forum and ask to speak with me? I'll wait for your message . I'm an admin the group and there's never a 'face doesn't fit' response to adding people so there must have been crossed wires somewhere. Thanks.
Community Champion

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

I tried to join this group and despite answering a the questions the admin asked me and being a 37 year old with breast cancer I wasnt accepted ... face obviously didnt fit
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

i did a video on my breast cancer journey. please check it out. https://youtu.be/d13g9Wky4us

Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Tania786 follow the link on this thread 2 posts down.
It is a completely private group no posts are seen on your friends news feed.

As it's October there is another page too which is public to raise awareness of breast cancer in young people. #nottooyoung

Good luck with your treatment
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi all, I am 36 yrs old and have been diagnosed with Triple negative in July. I had lumpectomy to remove the tumor and lymph nodes were clear. I had my 3rd FEC chemo on Weds. Now got 3 X T to go then radiotheraphy. I have been posted mgs on Chemo July thread and someone mentioned this forum to me for younger women. I would like to join this forum and facebook page too. But i don't want my friends on facebook to know I've joined the page. Not sure if it's possible.
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

fabulous group, I enjoy using both this forum and YBCN

Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi if you would like to join you will need to message us on our main Facebook page and one of the admin team will be able to join you - here's the link

https://m.facebook.com/YoungerBreastCancerNetwork?ref=bookmarks
Or you can do a search for younger breast cancer network UK and it should come up.

Let us know if your still having problems.

Thanks
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi there, my name is Paula I'm 35 yrs old and have just been diagnosed with triple negative breast cancer. I was hoping to join the group and Facebook page if possible x
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Bumpy x
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Bump xx
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hello Vickie
Wonderful idea, congratulations on you and your friend for the idea and congratulations on those ones who administrate it every day.
I am Portuguese, leaving in Lisbon. Unfortunately, I couldn't found such kind of group locally, neither in Lisbon or Portugal. Just a blogger with BC at age of 27 who has been a great support and already a friend.
I would like to ask you to accept me on the group. Although, the treatment can be different from country to country, our concerns about family, intimacy, career are the same, independent if UK based or continental.
I'm 40, diagnosed with BC on 28th of March. Surgery done 16 days ago and waiting on oncologist appointment to set up radiotherapy and hormone therapy
Once again, congratulations on such amazing supporting group!
Best regards
Paula
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Bumping up :-)

Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Bumping too :-)

Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi Tors

 

Just caught up with your post - it sounds like YBCN UK are going from strength to strength with their support. Keep up the good work!  Best wishes. xxx

Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi everyone, I thought I'd take the opportunity to bump this thread up so that the link to our Facebook group is easy to find. In case you haven't read all the posts above (I never do....!), I'll just say a bit about YBCN. I was diagnosed in March 2010 at age 36, totally out of the blue. I felt so isolated and, to be honest, I felt like a freak in the school playground and like a freak in the breast clinic because I didn't fit in anywhere. Over time, and with the help of some CBT, I realised that then isolation and lack of peer support had really made my breast cancer dx and treatment much harder to deal with. I used these forums constantly, and am very grateful to BCC for supplying them, but I felt I needed something a little bit different and to be in a place where I wasn't an oddity, where I was surrounded by people in the same boat as me. So I set up a Facebook support group for young women in the UK and Ireland (or with strong links to them) for young women with a bc diagnosis to talk, cyber meet, form friendships, support each other and to find others like them close by. There are over 600 members now and a few fabulous members help me with the admin on the site as it's too much to do alone! We have separate groups for different things, including a main hub for everyone, a moving in after initial treatment grp, a pregnant when diagnosed grp (we've had a quite a few babies born with lots of hair after their mums had chemo when pregnant!), a research group and a group for members with recurrences or a secondary diagnosis, which is a particularly supportive and helpful group. If you have been diagnosed with BC at 45 or under, and are Uk/Ireland based then feel free to send us a message on the link below. Just click the message button on thepage rather than post on the wall, because that wall is public. If you're worried you've got the wrong bit, just send a quick message to check you are messaging the right place and one of us will get back to you. The group itself is within Facebook but separate to that public page. It's totally secret and nobody outside of it can even see that you are a member, and certainly don't see your posts. And if anyone reading can't join then why not come and have a read of our page and like it so you get our updates. Finally, a big thank you to the Breast Cancer Care team at the young women together weekend in Manchester this weekend. They let metalk about myself and my group (my expert subject!) and have been very generous in letting me share about our group in their forums. Thanks.

https://www.facebook.com/ManchesterYoungerWomensBreastCancerNetwork?ref=hl&bookmark_t=page
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Bump
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Just bumping this up again x
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi,

I'm just bumping up this post about our Facebook network for younger women diagnosed with breast cancer. We are coming up to a year old now! Basically, if you haven't already come across us, we are a user led group n Facebook where we have all received a breast cancer diagnosis at a young age (under the national screening age of 47) and we chat and support each other. We've about 600 members across our different groups, which include a main hub group, a moving on group for after active treatment, a group for those with recurrences and secondaries, a group for pregnant women or being diagnosed within a year of pregnancy, and a group where we chat about research etc so that you have to 'opt into' that kind of chatter rather than stumbling across it accidentally and scaring the bejeezus out of ourselves!

We have just had another YBCN baby born, a little girl this time. We've quite a few members who are, or have been, pregnant during diagnosis and treatment. We've also extended our remit to include young women in Ireland too, and those with strong links to the UK (eg. Diagnosed when studying abroad).

We've a close knit group of secondaries ladies, who have just had their first big YBCN meet up in Birmongham this weekend. The good thing about being on a facebook format is that we get to see the photos!

Here is the link if you want to join https://www.facebook.com/ManchesterYoungerWomensBreastCancerNetwork?bookmark_t=page. And even if you don't fancy joining, or don't fit the criteria for whatever reason, we'd love you to 'like' our public page , and come and have a read of our status updates because they are pretty good, if I say so myself!

Thanks

Vickie
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

*bump*
Peer to peer support is not something that is talked of. We are offered support from health care professionals but sometimes it just the simple things that can be share from experience that makes the difference, especially when dealing with cancer at such a young age and with the pressures of a young family.
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hello! Just to add that this Facebook grouP has beeninvaluable since I 've been diagnosed. Really supportive, learning from others experience and helps builds the confidence that I will get through this and make something good out of it...
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

I forgot to say, a lot of our members have joined Facebook just to use our group, so don't worry if you aren't on it yet, it's easy and you can set your security settings so nobody need ever know you have joined FB! also, it's not that tricky technically. I am a massive technical incompetent and how I managed to set up an online network for breast cancer continues to amaze me on a daily basis, so if I , with my technical skills, can do that then you, with yours, can join Facebook! X
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

double bump
Debx
Member

Re: Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Bumping to appear on latest posts
Member

Younger Breast Cancer Network (UK), online support for young women diagnosed with breast cancer

Hi everybody,

I just wanted to let everybody know about our group. I've previously posted a thread but thought a fresh one would be appropriate to celebrate our six months up and running.

In March 2010, I was diagnosed with breast cancer at age 36, with two pre school age sons, no family history and no risk factors. I was given a Breast Cancer Care information pack by my breast care nurse and found my ways to these forums pretty quickly. The support was invaluable. I met a quite a lot of ladies here who are still my friends, and we went through every step of the process together. One in particular, Midge, became one of my closest friends. We realised just how valuable peer support was for women our age going through a diagnosis and treatment, especially given that you feel so different from your peers in your normal world and so different to the other patients in the medical world.

We attended one of BCC's/Lavender Trust's younger women's forums in Manchester. If you don't know already, they are a two day residential event in a nice hotel, in various cities across the UK, and you get to meet loads of other young women who are within three years of diagnosis, and there are experts on hand giving talks about fertility, diet, exercise, menopausal symptoms, relationships etc. I'd heartily advise any young woman reading this to go on one if they can (hopefully someone from the moderating team will even post a link to the current list of forums ?).

Anyway, we met a group of other young women, one of whom had the fab idea of setting up a secret Facebook group so we could all easily stay in touch. I realised from attending this event that, at the very time I felt horribly isolated and in need of local friends my age dealing with this same trauma, there were other girls all around Manchester, where I live, dealing with it in isolation too.

Given the ongoing support our little Facebook group was giving to our little band of forum attendees, I decided to try and use a similar idea to link other young women from Manchester together, so they didn't feel as
isolated as I had felt. I had always felt very welcome and comfortable on the BCC chat forums, so I set up a Manchester network secret group n Facebook and told people about it here.

Within a few days, it was abundantly clear to Midge and I that we would have to ditch the Manchester and make it a UK group, as we were inundated with requests to join from young ladies across the country. We renamed ourselves " Younger Breast Cancer Network (UK)", set up a public Facebook page and asked ladies to message us there so we could join them to the main group. In the six months which we have been running, we have just shy of 400 members in our secret chat group, and the group is busy at all hours, day and night.

We have had to set up sub groups now, as we are so busy! Everybody has to be in the main group, but we also have entirely separate secret groups for certain things. These include groups for those with recurrences or a secondary diagnosis, for members who are past their main active treatment and want to stay in touch but not be reminded of the difficulties of dx and active treatment 24/7, those untreated in discussing research/evidence papers/articles, publicity, awareness and media and administration. We also have time out rooms for any members who feel particularly overwhelmed at given points. The group is too large to manage alone now, so some of our longer term members have been kind enough to accept admin responsibilities. We are currently organising fundraising ring fenced for younger women's services/research (eg. BCC's Lavender Trust), an awareness campaign and publicity to let girls across the oncology units know we exist.

The research shows that psychological outcomes can be worse for younger women, aft a breast cancer diagnosis, and that peer support is essential. That's why forums like this and like our FB group are so essential. The criteria to join the secret FB group of YBCN (UK) is that you are UK resident or have very strong links to UK (as treatment differs so much from country to country), and that you are a younger woman with a breast cancer diagnosis, which we class as generally under the national breast screening age of 47, but do look at individual circumstances as and when necessary. It doesn't matter if your diagnosis was a few years ago, or if you have a secondary diagnosis now as we will add you to the main
group and then any relevant subgroups.

Our members tend to talk about fertility, infertility, early menopause, dealing with young families, implications at work/on their careers, fundraising for younger women's services and younger women's awareness, as well as a whole host of other breast cancer and non breast cancer topics. The ability to post photos is really useful, especially to see how the cold cap has worked for people or how long hair regrowth takes. It is a secret group, so your posts can only be seen by other members of the individual groups, and not by your whole Facebook friend list or on google.
It is this privacy which is the main benefit to most of our members, as we have to discuss heartbreaking topics like abortions in early pregnancy, the loss of a sex life to a new bride and young mums receiving a secondary diagnosis, and we find our members can talk freely about things they just couldn't share in public.

We know our criteria does exclude older women, and although we fervently hope that everybody facing breast cancer gets the support that they sorely need, we are afraid we have to be quite strict on admitting members as we don't want to water down the main benefit and purpose of the group, which is to provide peer support and a network for younger women who are feeling isolated, and to enable them to meet local girls and women just like them who might be living just round the corner from them.

We have members ranging from 21 upwards, if you fit the criteria and would like to join, just follow the link (which I know is the old name but won't seem to allow itself to be changed for some technical reason! ) .

And, before I go, I'd like to say a HUGE thank you to Breast Cancer Care's team who have supported us in setting up our group, provided sound advice when we have struggled, and have let us discuss our group on their forum. We could not have done this without BCC (not least because that's how we all met!) and I would urge readers to keep using the BCC forums and services (especially the younger women's services!!!) as they will no doubt prove as invaluable to you as they have been for us,

Thanks for reading,

Vickie

https://www.facebook.com/ManchesterYoungerWomensBreastCancerNetwork?bookmark_t=page