I posted a status about it on the public page of the Younger Breast Cancer Network Facebook group I run. Some of our status posts are picked up by Facebook likers and shared, and we can get it seen by over 25,000 people, but I'm afraid to say it didn't happen with the secondary bc awareness day one I posted yesterday. But at least some of Facebook world will have seen it on their news feeds, having not heard much about secondary bc before.
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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
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hi, just to post in the chemo thread as it's the most relevant place. For those of you worried about losing your hair, or wondering about regrowth, scarves, hats and what a cold cap success looks like, have a look on the new twitter account for Younger Breast Cancer Network (UK). This is our Facebook support group for younger women with breast cancer, and our members have been posting photos in the confines of our private group for many months, but now we are starting to put them on our new twitter account too so that everyone can see. The account is @YBCN_UK , and the hashtag we have dedicated to this fine activity is #YBCNhairwatch . It's really helped our members to cope with hair loss or to endeavour with cold cap so we thought we would extend the benefits outside of our closed group. Hope this helps some of you. X
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In October last year I set up a secret Facebook group for younger women (pre national screening age) in the UK. It started as a way to link girls living locally to me in Manchester together but within a day or two me and my friends from the BCC chat forums(Midge and Brad Pitt's wife2b) realised we needed to extend it nationally because we were literally swamped with requests from ladies across the country.
Well, it's gone from strength to strength and yesterday, just 9 months after we started, we added our 500th member! Now I'm not impressed thatso many young women have found themselves on the wrong side of a breast Cancer diagnosis, but I am so very pleased that these women have a place where they can find each other and chat in private, as peer support is vital. It's so hard to be so much younger than everybody else at the breast unit and it is instantly reassuring to be surrounded by women going through what you have gone through. We have members in their 20s, 30s and early to mid 40s, and through all four corners of the UK and now to Ireland too. We also have various active subgroups now, for those ladies with recurrencies, secondaries, who are moving on after treatment and those who want to chat about research. I've now got a great team of members who help with all the admin and joining people as it was just too busy to keep up!
To mark our 500th member we have just launched our twitter account, @YBCN_UK, and one of the hopefully helpful things we are doing is posting photos of member's hair loss, hair regrowth, scarves, hats and also cold cap success stories. Use the hashtag #YBCNhairwatch to have a nosy!
New members are welcome, just message us on the private message button on our Facebook page so we can start getting you added. Here's the link to follow-
Thanks for reading. Please come and like our Facebook page so we can keep extending the awareness raising we are working on and pleasefollow us on twitter too! And a big thanks to BCC who have supported us from the very outset and provided advice and reassurance when things have got tough, and allowed us to reach new members who may need us via their forum. A super big thanks.
To mark our
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Hiya Swissmiss, it's lovely to catch one of your posts again (in a 'we're both coming back here to help people kind of way obviously, not a we need help again way!)
Thanks fr signposting people to the group. We've had several pregnant members in the YBCN facebook group, and at the last count I think we've had 4 YBCN baby boys born so far......there are also some members currently pregnant and more members who have very young children than I would like to count.
I Hope all is well with you, feel free to join our FB group still, if you change your mind at any stage!
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Hiya bels, I am really sorry to read about your current worries. It sucks, I know. I was diagnosed in march 2010, with no family history, after finding a lump and going to the breast clinic. But since then I know 4 of my real world friends my age who have had scares (mainly cos I make them check their breasts now!) and they have all gone through the breast clinic tests and their lumps have not been cancerous. So chances are it will be ok but, if it is cancer, then you've done the right thing getting it checked and there are loads of treat,nets which are usually successful! Take care and keep us updated xxxx
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I'd be really really reluctant to tell you to go for it. What was your diagnosis and what was your treatment? You are at the highest risk of recurrence for the first two years after treatment, and that's probably why your medical team are advising you against a pregnancy now. I would urge you to think really carefully about this. The current evidence suggests that it's ok to go on to have a pregnancy after a breast cancer diagnosis, but i don't think it meant this soon after. If you were to have a recurrence, either in the breast or elsewhere, then you'd need treatment whilst pregnant. You have to be at a certain stage in pregnancy before they'll let you have chemo and it's quite late on. I've seen quite afew friends go through chemo pregnant and they are terrified for themselves and for their unborn babies. I've seen quite a few girls be diagnosed n early pregnancy and have to make a choice to have an abortion as they needed treatment ASAP to save themselves, and I've seen girls make the opposite decision, to keep the baby but delay treatment and so drastically reduce the chances of being around to bring their baby up themselves.
You have a choice which those women didn't have. Nobody can guarantee that these things wouldn't happen to you even if you left it the 2 years, but you'd have a much better chance of not facing these heartbreaking circumstances if you did wait just two years. And you need some time to get past your treatment and centre yourself again too, s that you'll be the best mum possible. I was diagnosed at 36, three years ago, and I was on a high after treatment, very manic, desperate to get my old life back on track and carry on as if the breast Cancer was just a blip. But it isn't a blip, it takes a lot of time to get your head round.
I'd really ask you to think again and, if you wish to go against medical advice, for you to really really understand your diagnosis, it's implications, your prognosis and the fact that you were only 25 at dx. if you don't trust what your own team are telling you, please please get a second opinion so you can make a fully informed decision.
All the best,
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I agree with lemon grove about seeing a solicitor Jen, if you are a member of a union at all then you've probably got free legal advice as part of your membership package and that would be a great place to start.
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Here's a post I did for another thread on m three year cancer-versary. I thought it was appropriate to put it here, in a 'circle of life' type of thing.....
Three years ago today
Three years ago today I was wishing that time would jump forwards so I could be where I am today, rather than where i was three years ago today. I was hoping that in three years, on 6th March 2013, I'd be feeling well, fit, happy and alive. I didn't think I would be alive. I thought I'd be long gone, having died an agonising death, and not having seen my little boys grow up. Three years ago today, I was diagnosed with breast cancer and my world suddenly froze. I couldn't envisage ever feeling like myself again, as I felt so different, so apart, so separate and so isolated, and so very far removed from the person in my head, and in my body, and in my heart who I had known so well for the last 36 years. Three years ago today, i learnt that I wasn't invincible and that bad things could happen to me. I learnt what a panic attack feels like, I learnt a whole bunch of cancer terminology, I learnt that the medical side head tilt usually precedes bad news, and I learnt how to break my mum's heart without even trying. Three years ago today I met an awesome surgeon who let me fall apart, hopefully saved my life and continues to gently poke fun at my ability to be terrified about the smallest thing whilst simultaneously quoting the most obscure research to prove a point. Three years ago today I realised that my life was now a before and an after, and I started to make plans in my head for my little boys' futures if i was no longer around to care for them, and it was then, three years ago today, that I realised exactly how important my lovely husband was to me, how much I depended on him and how much I loved him. Three years ago today, I had never had chemotherapy, or seen myself with no hair, and I didn't understand that sometimes you could be so terrified and anxious that you just couldn't physically chew and swallow food. I didn't yet know the best way to tell people that I'd been diagnosed with primary breast cancer, and I didn't realise that each time you told someone new you would be forced to deal with their emotion and shock and end up reassuring them, whilst inside you were numb. Three years ago today, I stepped into a totally different world. A world of being a patient, of being ill and dependant. I stepped into a world where I was given a glimpse of what it might be like to be old, of the soul sapping reality of losing your independence and aching all over, with a time clock ticking rapidly towards your final hours. I saw the thin line between life and death, the vulnerability of the lives we build up and how they can be dashed through in a single moment. I was shown the arrogance of believing that you can plan your life and expect things to work out as you had decreed. Today, three years later, I am glad I am not still living in that day, three years ago. I am now where I wanted to be on that day. This is the three years I wanted desperately to pass, and now, three years after that day, I am grateful. I am grateful to be here and well enough to write this. I am grateful to have had a first class medical team who have looked after me. I am grateful to have a fabulous, happy and healthy family, and to have a bunch of great friends. Three years since that day, I have made new friends I have met along the way, who have become an intrinsic thread in the pattern of my daily life. But, I have also lost friends who were not as lucky as I was. And it is for those friends that I am celebrating being here today, three years after that day. When I am raising a glass of something sparkling later today, I will remember all those ladies who didn't get to mark their 'three years ago today' moments, and I will try to live each day well, using the lessons learnt from that day, three years ago today. But, I will do my best to live those moments in the vibrancy of this day, three years later, rather than in the shadow of that day, which is in the past, where it belongs, three years ago today.
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I think the biopsies can physically affect the area, but also I bet you've been protecting that side of your body subconsciously, probably stooped over a bit or adopting a position that's different for your body and so are aching all over cos you are using those muscles etc totally differently than you normally would. I had bad shoulder pain after my surgery and was terrified until my surgeon pointed out that I was virtually stooping over to protect my bad breast and that was why my shoulder was sore. I made an effort to stand normally and she was right, the pain eased up. Xxx
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It's a very big decision you've made not to have the treatment which your oncologist and medical team had discussed and agreed was the best thing for you. I wonder what the oncologists view was after your first chemo? Did he suggest reducing the dose? Or swapping to a different chemo? Or tweaking your medication to deal with side effects? Or putting you on a weekly chemo? All of these are options which have helped numerous ladies who I know to continue chemotherapy after a bad first cycle. I'd be surprised if your oncologist hadnt suggested this and would urge you to get a second opinion.
Have you been given your statistics for survival? If you are making such a massive decision, you need to have every possible bit of information at your disposal to make a balanced choice. Your stats can tell you the likelihood of survival with just surgery, and then the added benefit of chemotherapy, and then the added benefit of hormone therapy. Do you know how oestrogen responsive your tumour was? It's scored out of 8 and the higher the score, the more benefit tamoxifen and ovaray removal will have been to you. How large was your tumour? Tumours over 2 cm are more likely to have spread than under 2cm tumours. Was there vascular invasion around your tumour? Hats another indication it may have spread. What grade was it? What was the K67 score? Why exactly did your oncologist think chemo was the best option in the first place? I think you need to be absolutely clear on all of this information before you male such a monumental decision. Yes, it is your decision at the end of the day, but you owe it to yourself to have all the salient information at your disposal whilst making it. You need to be sure you know how breast cancer works, how likely different types are to spread and what type yours was, and knowthat different markers in a tumour can indicate likely propensity to spread, and these should be in your pathology report, which it would be very useful for you to read. This is your best shot at being cancer free. Cancer cells can travel from the main tumour through the lymphatic system and can leave traces in your nodes, but cancer doesn't always leave evidence it has moved on from the original site, it can move through your blood stream. There are, sadly, many cases of women who have been node negative but have still died from their breast cancer because it spread, and the younger you are, the more likely it is that you will fall on the wrong side of statistics.
I urge you to ensure you have all the information before making your decision, ad to go get it if you haven't already got it all. If you already have got it and have considered it, and your decision to not have chemo and tamoxifen is based on that, then fair enough, it's totally up to you, but just don't go into this blindly.
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