We’re developing a new online photo exhibition and we’d like your help. The Moving Forward gallery features photos of people who have completed treatment and are moving forward from breast cancer. We’re hoping that more people will add their photos, whether they have recently finished their treatment, or had breast cancer several years ago. We already have a few photos up, but we want lots more. Find the gallery at breastcancercare.org.uk/mfgallery - please add your photo and tell us what you think. Thank you!
Just a thought, but what about the people with stage 4, who won’t be moving on? I know for some people bc is just a disease like any other that you deal with, and then get on with life, but for some of us there is no escape.
Sorry just read my comment above and realise how negative it might seem - and I didn’t mean it to be. I know that BC Care is a wonderful charity, and does a great job. I also appreciate that BC Care are trying to remove the fear and stigma from BC, but the fact is it is a terrifying killer disease. I mean over that past four weeks alone, three young members on this site have lost their lives (Kaz36, Mel 999, and Louisa), and even those who reach that wonderful five year milestone without recurrence, frequently do so knowing that they will spend the rest of their lives worrying whether it will come back.
My own feeling is that we just need to be honest about this appalling disease (without fear-mongering), and then maybe we will get policy makers to provide the funds we need to encourage more research, and the drugs/treatments that are available in other parts of the world.
Lemongrove I don’t think your comments were negative just honest.
Years ago the forums were a different place, more serious and, in my opinion, more honest about the realities of living with, after a breast cancer diagnosis and I preferred them but I guess I would say that as a stage 4 from the beginning patient. I fully, I absolutely understand people do not want to be scared witless but BC is still, for some of us, a killer disease. Sometimes I have found the loneliest place for a stage 4 patient is here which is why I’ve ‘moved forward’ and spend much less time here.
I understand your comments. Since getting DX, I hear all the time, “oh, BC is so curable these days” and “Kylie got cured so you will”, “it’s the best one to get” etc. It’s like I and my disease are not taken seriously.
PS…Lemongrove sadly the number of forum members you mentioned who died very recently is greater than 3 but, understandably, not all are always posted here.
I think the photo gallery is a very good idea as it provides hope to people who have recently been diagnosed that many people do reclaim their lives and sense of self after treatment for primary breast cancer, which is what you are desperately grappling for when diagnosed. However, the flip side of this is inevitably a judgement call on how to deal with those of our number who have been dealt the stage 4 blow. From reading opinions on this forum, it seems that the dark place you inhabit after a secondary diagnosis is an equally, if not harsher, place to be than after a primary dx. However these ladies also regularly reach out for hope and good news stories of women in similar situations to their own who have reclaimed their lives post a secondary dx, so could the photo gallery include realistic accounts of the quality of life enjoyed by many ladies once the initial trauma of the stage 4 dx has been navigated? Surely the rays of hope are as important at that stage to help people through?
Vickie
Hi all, thank you for your comments.
We know what a big issue moving forward is for many people who have completed initial treatment and we hope the gallery helps people who are at this stage. Thanks also for flagging up the issues faced by people who are living with secondary breast cancer. We’re also working to raise awareness and provide support in this area, and in particular, we’re currently planning our activities and materials for this year’s Secondary Breast Cancer Awareness Day. This will take place again on 13 October and we’ll shortly be updating our Secondary Breast Cancer Awareness Day campaign microsite (see breastcancercare.org.uk/secondary) and will produce new materials to mark the day. These will aim to raise awareness of the issues faced by people who are living with secondary breast cancer. I’ll post more information about this at the beginning of July, but in the meantime if you’d like to know more, please send me your email address and I’ll put you in touch with my colleague who’s coordinating this work. She will also be looking for people who are interested in contributing, so please let us know if you might be interested.
You can also find out more about the work we do around secondary breast cancer on our website here breastcancercare.org.uk/breast-cancer-breast-health/secondary-breast-cancer/
breastcancercare.org.uk/secondary
breastcancercare.org.uk/get-involved/campaigning/secondary-breast-cancer-taskforce/
Just tried to upload a photo but it wouldnt work, is it up and running yet?
Hi Tors,
Yep, its all up and running, just may be a little slow due to the website issues we’ve been having which have affected the forums too. If it is still not working, drop me an email with your details and i’ll pass them on (mike.niles@breastcancercare.org.uk).
Best wishes
Mike
Hi Mike,
I think LG makes an important point. I’m in the very lucky position of having finished my tx and having an excellent prognosis. Some of my friends made on this site are still undergoing long and gruelling tx and while I know they are happy for me, I feel very aware of how things are for them. Although I do try to emphasise the positives to new people on the site, I think it’s also important not to forget that none of us is completely ‘safe’. Conversely, breast cancer isn’t necessarily a death sentence - most people who don’t know about it assume that it is and it has a kind of horror sound to it that isn’t the case for many diseases that are equally likely to kill you.
I like Tors’ view that perhaps living with bc is a better focus for this; from my perspective it would feel a little like gloating to put my photo on there (although it really isn’t, I’m just very aware of how the stage 4 people might feel about it).
Lynne
I have to say I agree with Lemongroves points. I find the whole idea patronising and minimising of my experince. I am not sure what breast cancer care is trying to say? On a personal note I dont really like the idea of the “moving on picture gallery”. I am afraid it does not get my vote!
Mike, can you try to explain what is the POINT of the gallery?
Just seeing a load of smiling faces is all very well but I don’t see that it’s giving any information. Or are the pictures going to be accompanied by a brief message from the person in the picture? Even then I think it would be of little value as I think a lot of the messages would get a bit repetitive. If you were going to put pictures up I’d find pictures of scars and op sites 6 months, 12 months, 3 years later more informative, and I have to admit that was one thing I DID google when first diagnosed as I wanted to know what I might be facing.
I’m not knocking the attempt to help those who have gone through the active treatment bit and are trying to find “the new normal” (which also applies to secondaries ladies, whose “new normal” may include ongoing treatments) but I can’t see that I’d find a load of photos of people’s faces helpful at all, you could just as easily put pictures of anyone, it’s not as if BC is something that can be SEEN.
Does not get my vote as it is.
There’s no information about anyone’s original diagnosis. How can any comparision be made?
Dividing the site up by ‘years post diagnosis’ is meaningless. This matters. Treatment will have been quite different. Prognoses are radicially different, as are temporal patterns of recurrence between different types of cancer. Primary breast cancer is more than one disease (and so, come to that, is metastatic breast cancer).
The target audience isn’t clear. I’m guessing that the point is to offer some hope to women who are newly diagnosed? If so, then well done to the kind people who volunteered to appear on the site.
I have to say that I don’t think that my statement says anything like - ‘everything is great now, I’m getting back to normal and moving forward.’ Okay so I didn’t put down that chemo nearly killed me and that I have only a 39% chance of surviving 5 years and I guess I could have done, but there’s only limited room and I think there is nothing wrong with having something that does offer a little bit of hope, even if it doesn’t apply to everyone.
When I first came to the BCC forums before dx I was not only looking for information, advice and support, I was also looking for stories that would give me hope for the future too. I think that this gallery is a good idea from that perspective which is why I agreed to take part.
BC is a cr*ap hand to be dealt for anyone and whilst honesty and realism is *hugely* important, people do need the comfort of some positive stories too.
That all said, possibly adding a brief description of what treatment each person has been through might be a good addition providing they agree to that. I’m more than happy for my own details to be published on that score.
It’s really interesting how this has turned into sort of a ‘marmite’ situation and I can see how some would be put off by the gallery.
Just my two pence worth!
Nymeria x
I agree with and understand what everyone is saying - there is a “but” however… and that is (as xwelcomex says) what if it gives some of the newbies hope? surely that’s not a bad thing?
When you’re right at the start of this horrible journey many people think it’s a death sentence and assume the worst - I think that seeing women (and men) who have got through it is not such a bad idea when you look at it from that point of view.
Yes needs to made clearer who the target audience is.
I assumed newbies, so my photo has been submitted, cos if it gives one person hope then that’s good enough for me.
Edit= Forgot to add that when you click on a photo it brings up the info on them that’s been submitted too.
I have a lovely photo for you.
It is me topless - two 11" mastectomy scars running completely across my chest (the keloiding is fabulous)and then there is the lovely podgy lymphoedema in both arm and chest all covered by some terrific radiation burn and radiotherapy tattoos. A bit lower on my torso you can also see the scarring from the oopherectomy.
Will that do?
Bit like my mums then msmolly - but would you want to see that as a newbie and have the sh!t scared out of you - before you even know what road you’re on?
I just wanted to clarify my main point and explain a little. Maye I sounded a tad flippant in my earlier post?
Some diagnoses (mine included) are pretty heavyweight. Within days of being diagnosed, I knew my prognosis (which, like nymeria’s, is the wrong side of 50-50). At the time, I wanted facts; ‘top line’ overviews didn’t help me to feel any better (and still don’t). I wanted to find someone else with the same kind of cancer as me, who’d had the same type of treatments. Whilst it was heartwarming to hear ‘survivor’ stories, they held little comfort for me. I wanted to find anyone with WHAT I HAD who was alive and NED 5 or 10 years later. Only hearing ‘good news’ stories from people with a different diagnosis just made things worse. It was a horrible time.
I couldn’t find what I wanted on this site. I went over to the HER2 support boards, where some excellent information was available, along with constantly updated research data and other med lit.
So again, bravo to those who were kind enough to volunteer their stories. I know though that had it have been around when I was dx, it would have been far more meaningful to me to have seen someone with my diagnosis. Of course, perhaps that isn’t how most people feel?
xxx
…Thinking about it, couldn’t I do just that? Submit my contribution with details of my dx and tx?
I stumbled across an American website when I was playing around on the net the other day and it had stories by people of all different stages BUT you searched for them first so you could see stories of people in a similar situation. You searched by the following criteria:
Age range
eg Under 35, 35-45, 45-60, 60-70, 70 and above
(important as you do face different obstacles. Just one example - I am 33, was trying to get pregnant and now I might never get pregnant and will certainly never breastfeed and that is something my husband and I had to come to terms with along with the diagnosis. Also the prognosis for younger women is usually lower as it tends to be more aggressive)
Breast cancer type
(DCIS/LCIS, IBC, DIC, LIC, Advanced etc)
Stage
Stage 1, Stage 2, Stage 3, Stage 4
Keywords
free text (for example if you only want to read about those who are triple negative etc)
If you’re not bothered about the age bit, for example, you could just leave that as “all age ranges”.
It would then come up with stories relevant to your cancer type, stage and age - and newbies wouldn’t be scared by reading stories from people with much a more advanced cancer at diagnosis, and similarly those with more advanced cancer would read factual stories of people who were in their situation - not “I sailed through the treatments and now have a 99% chance of no recurrence” type stories.
The stories that came up were heartfelt stories that portrayed breast cancer as it is. In my age range, BC type and stage there were postive stories of people years later with NED and others who had developed secondaries and spoke about their experiences dealing with that. There was no concealing of the truth, but the stories were also not unecessarily negative. There were also people who were affected by the same issues as me (fear, fertility and body image) that I could relate to.
We can’t pretend that it’s all plan sailing! Or that we’re not going to be worrying for the rest of our years (no matter how long or short) that this isn’t going to come and bite us on the arse.
I, personally, wanted and needed an honest picture. I wouldn’t have been happy with a few smiling photos and a couple of lines saying that the smiler is now moving on. I would automatically think “well, I bet their tumour wasn’t nearly as big as my monster and that it hadn’t spread to their lymph nodes” etc - and the danger is then that you start looking for other stories of what to expect and inevitably come across lots of out-of-date and terrifying accounts!
We need to educate and tell it “as is” which is basically the whole point and the benefit of this forum and why we are all on here gleaning information and sharing our experiences with others. I, personally, would have (and still would!) prefer to read personal accounts that are current and relevant to my situation.
Sorry if I’m not particularly articulate today. I had an op last night and only 3 hours sleep (apart from the time I was “under” which I guess doesn’t count!) and chemo 2 today, so suffering from chemo brain a bit. But hopefully I kind of made sense!!