It is reported today that Bernie Nolan, of the Nolans, has very sadly been diagnosed with secondary cancer. Only last summer there were newspaper stories saying that she had beat primary cancer and was taking on new roles - but just three months later, it is reported she has metastases in the bone, liver, lung and brain. Maybe this tragedy will force the press and even medical profession / cancer charities to re-examine the language they use in relation to cancer. Yes, those who are diagnosed with early stage BC, have a very good chance of survival, but even they cannot claim to be cured (as cancer can lay dormant for many years). Also the Prof that treats me say’s that around 40% of those diagnosed with stage 3 cancer will have a recurrence. Cancer is definitely not a war the human race has won, and to claim otherwise is to encourage complacency, and by definition lables those of us with secondary cancer, who have not beaten the disease, as losers.
Just replying to myself as othrewise thread doesn’t appear in posts.
I was looking back at some of the newspaper articles about Bernie Nolan, and all had sentences like “after beating cancer” But, don’t we need articles like that to give us all hope for the future? Speaking for myself I would rather read an article like that than something that states that 40% of those diagnosed with stage 3 will have a reacurrance. I was stage 3.
I was just reading that too. What a brave brave lady. May she continue to fight and be an inspiration for all of us here battling this disease!!
Really sorry to hear about Bernie Nolan :((( Sending her all the positive vibes I can xxxx
Golly what a lot in these posts!
Lemongrove, you are SO not a loser, nor are any of the Stage 4 (Secondaries) people. I know you know that, but you are right, the language of ‘beat’ and ‘survive’ is not helpful; I wish there was another language that could be used.
SuperTrouper, I too was (am?) a Stage 3 person. To read that 40% of us will get a recurrence is maybe not encouraging, but it’s the reality. I prefer to read it as a 60% chance that I won’t. I think a distinction between types of recurrence (local, regional, distant) is one the media overlooks or ignores or is unaware of. Yes, we need good news stories, but we also need careful expression of them so that we don’t get the double whammy of people saying “so you’re cured now then” when we can never say that.
It is really sad to read about Bernie Nolan, she was a few months ahead of me, and reading her story during my treatment was encouraging. It is, to me, even more sad, how many women I’ve got to know on here have been snatched from us by aggressive metastatic breast cancer. I don’t know what the answer is, but we need the Lemongroves of this world to remind us that Stage 4 is not always a death sentence and the awareness that sometimes it is. Finding the balance between ‘false hope’ and ‘real hope’ is the challenge I guess. Oh dear, I’m waffling.
In a very selfish way, I hope that this secondary diagnosis for a ‘celebrity’ may raise the public profile for bc mets. I appreciate that as primary, most people don’t want to hear the statistics about recurrence/spread but it is the reality that a substantial percentage of primary cases go on to secondaries, sometimes quite quickly, sometimes many years later. If it can be shown that it is possible to live with mets as long as possible then that is perhaps the best way forward.
I think the words “given the all clear” and “cured” should be banned. It upsets me when I read this about anyone. As a long term survivir myself I theink it gives false hope to people. It must be awful to be given the “all clear” or whatever phrase they use and then to find that this is not the case. I am “living” with Breast Cancer but I am not and never was given the “all clear” BUT more than 12 years on with secondaries and I still have a good quality of life. I hope that this is a help to people who are worried about their future. But please no more “all clear” or “cured”.
I feel sorry for celebrities in some ways who have bc because they are always in the limelight and don’t seem to get the privacy that all of us need while coming to terms with diagnosis, surgery, altered body image, chemo, etc. When I hear that Kylie and Martina Navratilova have beat it, I think to myself - for how long? I don’t think there will ever be words which make it easier for us to accept but we do have to be aware of the truth.
I’m sad for Bernie to be diagnosed with such extensive mets but as others have said, it may raise awareness of the disease.
This “primary” is actively living with those statistics, LizCat, which is why I have joined in the various things BCC are doing to raise awareness of secondary bc–including TRYING to educate our friends and family about the reality. I have finally got my family, at least, to recognise that I’m not cured. And more and more of us are aware that we are, as the BCC lingo has it, in the land of NED rather than “well”. A good friend of mine died three years ago of BC mets, after living fifteen years with NED. It’s hard to map out a path that refutes the black/white–bc/No bc dichotomy. Certainly living with the disconcerting and continuing SEs of primary bc, including lymphoedema, neuropathy and arthritis, gives me a whole new appreciation of the long arm of bc. I agree, that the best way forward is to show the many different ways that BC continues to change all of us. Lizcat, know that you are one of those here who provide hope and inspiration to me, at least. And all the best to Bernie Nolan, and to all of us here. It is hard to learn to live in the reality of the present, rather than in the fear of the future.
Really upset to read about Bernie Nolan today. Both her and her sister Linda have been a real inspiration to me since my diagnosis in March 2011. Ive followed them both closely and really admire how both of them have conquered their disease and appeared to have got their lives back.
Im sending Bernie my very best wishes and lots of love.
Mandy x
Yes, I read about this yesterday. Although she is absolutely entitled to her privacy, I - perhaps selfishly - hope she uses her ‘celebrity’ status to raise media awareness with regard to secondary breast cancer.
I’m sure most people would prefer to read positive stories about breast cancer but, as someone with secondaries, I also want to hear real information.
Those of us with secondaries are most definitely marginalised. We are the story that no one wants to read. I feel that we were particularly absent during this Breast Cancer Awareness month. I thought that BCC’s input to secondary awareness day was very weak…the past two years we have been to parliament, this year some of us shared our stories and there was a social media campaign but I didn’t see any mainstream press and it felt a little like preaching to the converted and even their Facebook page had only two posts. Disappointing.
Wishing all the best to everyone living with secondaries.
Hi
I too prefer to think that…as a stage 3 lady…I have 60% chance of non recurrence but I was watching tv a while ago when Bernie Nolan said"it’s just a year out of my life and I love my new boob"…I thought she was treating it v lightly then…it’s not “just a year out” of a BC lady’s life…it’s the rest of your life…we’re never free of the threat of reoccurrence or a secondary dx…we never…"beat " BC…we just have to learn to live with the new reality that we’ve been given to cope with…when Bernie Nolan was dx…my aunt was fighting BC for the 2nd time…and I thought she could’ve been a bit more serious…it’s all v well sitting on breakfast and morning TV with a bald head…it’s the rest of the day and all the other days that count as well…I think the words “given the all clear” and “cured” should be banned as well…living with BC is what we all do in one way or another…both primary and especially secondary ladies…Lemongrove is right…the language used by the govt and the press should be examined and a message put across that once you are dx with BC you are only NED from one yearly appt to the next…celebs that go on the TV and talk about their BC should have a serious think about what they are going to say before they open their mouths…some celebs eg Jennifer Saunders didn’t make a big public thing about their illness…the likes of Bernie Nolan used it for publicity…don’t get me wrong…I have every sympathy for her…I just think she could’ve been a bit more serious…apologies in advance to anyone who may disagree
and …Lemongrove…you are certainly not a loser…you are one of the most informative ladies on here…and fiesty…long may you get on with what you do!!!..Secondary ladies on here make me less afraid of what one day may be my reality…thank you all…
Here Here to what Applestreet has just said. I read what some of the secondary ladies post up and it does give me hope and helps me to be less afraid of what the future may bring.
Bernie Nolan has said that there is now no sign of the cancer in her brain. Lets hope that she continues to get good results from here current treatments.
Tawny, I’m not a Facebook user so I am shocked that there were only two responses.
I also notice that there is no email address, or indeed any named person, mentioned on BCC’s website who could be contacted about secondary bc. (Clare Kemsley was formerly involved with this, maybe she has gone elsewhere?)
Sorry, I know this isn’t about Bernie Nolan but it is about secondary breast cancer… FOR LIFE.
Totally agree with you Applestreet!
One year out of my life and loving the new boob? I wish!
More like operation number 9 coming up tomorrow thanks to an incompetent useless ‘breast surgeon’ , massive scarring, a legal battle against the Hospital where i was treated, short curly hair for ages and the fear of a recurrance…
Saying that. life goes on and i hope this damm nipple is worth it! 
mrsblue - Just to reassure you, Clare Kemsley is still involved with our secondary work (and posted recently on the forum about it) from her role in the services marketing team. People across the organisation work on secondary breast cancer - we have specialists within the nursing, marketing and policy & campaigning teams, to name just three. It’s true there isn’t a contact email on the secondary pages (as far as I can see) so thank you for bringing that to our attention.
Also, re Facebook, we posted 13 posts about secondary breast cancer during October (we usually post one or two a day, so that is a significant proportion of posts on our facebook page during October) - and another one today, relating to Bernie Nolan’s diagnosis. Those posts were liked over 1100 times, shared by people over 216 times and people left 26 comments. And that isn’t including the people who shared information about it via the Thunderclap.
A round-up of the press coverage of secondary breast cancer awareness day is here. Our press team work hard to get coverage, but we would of course like more.
Sorry, I know this has got a bit off-topic, so back to Bernie Nolan…
totally agree with applestreet,I remember seeing bernie nolan on this morning making light of having bc,i remember thinking how much easier it would be for the rest of us if we were financially secure and could afford to have help and not worry how we would pay the bills whilst we fight this hideous disease.I do wish her well and hope that people realise it is not so easily overcome as some of the celebrities affected make it out to be.
Di.x
Leah, I was referring to the actual day, when there was only one post - only two came up on my newsfeed for the whole of October. Also, re. press - it would be great to get a heads up when there is a confirmed interview/mention etc. I know you can’t say anything until it has been confirmed, but you could do a “Look out for…” Last year I was interviewed via BCC for Radio 4, it wasn’t even mentioned on the Facebook page and only eventually on the BCC site. I know you all work hard and it is a tough topic to ‘sell’ but I think we could feel more involved. I know I am always interested to read/hear what other people have to say.
I’m afraid I’ve gone a bit off topic, too.