62992members
331153posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Is it just me.

34 REPLIES 34
Member

Re: Is it just me.

 
Community Champion

Re: Is it just me.

Hello all, 

Just wanted to say that I find the term "unsurvivor" very ill judged and inappropriate.  It is good that there is a campaign to highlight secondary breast cancer etc, but please change the term BCN. The prefix "un" surely means "not".  What on earth was BCN's thought process when inventing this word?

Regards,

Chick x

Member

Re: Is it just me.

I’m living with bone mets and living well for now I’m surviving well.  I am not an “unsurviver”

Member

Re: Is it just me.

Hi Anniej, I agree! I don't need a label. I always hated being labeled a "survivor" following primary bc, and as a brand new SBC person I hate the term "unsurvivor" more

Member

Re: Is it just me.

Excellent post waveylocks, some really good points made. 

The one about your friends and colleagues having ridiculously high expectations of you particularly resonates with me. They do regard bc as a 'good' cancer to get.

I am 11 years on from primary and have had secondaries dx this week. I was relatively jolly following primary.....

Big hugs to you too X

Shi Community Champion
Community Champion

Re: Is it just me.

Thanks Hannah have you posted this same information in the unsurvivors thread that has been started? If not please can you do so. Thank you Shi 

Member

Re: Is it just me.

I have bone mets and currently dealing with the news that my bc has reoccured in under 2yrs. The unsurvivors....what an utterly awful name. That implies I haven't survived. I am surviving, I am a battling survivor, please don't label me as dead already.
Member

Re: Is it just me.

Hello everyone

 

Thank you for all of your comments and questions about the campaign.

 

More information, including the report setting out our recommendations for UK Governments, can be found on our website.

 

We shared information about the campaign in an email to all supporters on Friday and across our social media platforms. However, in future, I’ll also ensure we post in the Forum.

 

Before I explain more about the campaign, I’d like to apologise if the campaign name has caused upset – this was not our intention. We are reviewing all of the feedback we’re receiving to see how we can reflect it in future campaign messaging.

 

I wanted to explain a little bit about how the campaign was developed. For years we have been frustrated at the lack of progress in the support offered to people living with secondary breast cancer. We know we need urgency from Governments and health bodies across the UK.

 

We worked with our Secondary Breast Cancer Campaign Group (a group of 29 people living with secondary breast cancer from across the UK) and undertook a comprehensive survey that 2,102 people completed. A strong message we received during the development of the campaign was the need to be bold, and to emphasise the fact that people still die from secondary breast cancer as a central message of the campaign.

 

However, also at the core of the campaign is the ambition that people can live well with the disease, and we want to bring about urgent change to ensure that can happen for as long as possible.  For example, our other campaign content features stories of people living with secondary breast cancer, highlighting that they are living well now but that we need to see improvements to diagnosis, treatment and support so that everyone can live well for as long as possible. I'd really appreciate people's thoughts on this campaign content.

 

The report sets out the actions needed by Government to achieve this change. Again, if people have views on any issues in the report that they would like us to cover in a similar style to the link to the video above then please get in touch with me and let me know. Similarly, if anyone would like to share their experience with us then please let me know.

 

I hope this information about the campaign is helpful. You can get in touch with me any time if you’d like to discuss anything in more detail. My email is Hannah.Maybour@breastcancernow.org – and we can also always arrange to speak by phone.

 

Thank you

Hannah

Community Champion

Re: Is it just me.

What on earth is an ‘unsurvivor’? As an educator I’m afraid I don’t recognise that term, nor is it in the dictionary. As a SBC person, if you’re talking about me..,then I just don’t like it! Where was the consultation carried out, not on here. Sorry, but this is just awful.

Community Champion

Re: Is it just me.

 

Spoiler
 

Well Id like to say: ABOUT TIME!! 

I was diagnosed Prim BC 5years ago. Very aggressive form with a nasty habit of reappearing  so continue on a wing and a prayer but know mine will come back ....just a question of when.

Im a realist. I dont appreciate the pink fluff! I dont appreciate the happy adds showing people skipping off into the sunset post treatment. Its not like that!!! It misleads everyone!! My friends & colleagues have ridiculous expectations of me. They have had to adjust to the 25% energy gal theyve got in their midst, the woman whose hair did not grow back (no one mentioned that one!) and the woman who cut her hours in half at work, like many of us. I have had to do my own research to find out what are the signs symptoms that should get me jumping up and down of it coming back!! No one told me, least of sll the medical profession!!! The unmentionable!!

And you are all correct nothing is said about metastic breast cancer.....one has to go abroad to find that one out (I mean websites! No energy for actual travel) or come on this sevtion of the forum to find out!!

 

Thanks to all the campaigns to raise money for research the general public (& many GPs) have this idea that bc is like a very bad dose of extended flue, the treatment is gruesome but if you grit your teeth you can still work whilst on it and then after treatment everything apart from a scar or two and false boob or two is back to 'normal'! What nonsense! What piffle!! 

Breastcancer Care & organisations like them should raise the true picture of what really goes on!! The truth is once disgnosed you have to live with it for life whether in remission or active. You have to live with the consequences of treatment, whether ongoing or finished. Your life is irrevocably changed. Stop painting pretty pictures of fantasy scenes that do not exist! Whilst on treatment I had to turn the telly off to avoid the silly fantasy adverts pushed by cancer organisations, it was actually very hard to avoid I discovered. I cannot imagine how insulting they must be to those of you with secondary bc!! 

 

The world has changed.....if medics are right 1 in 3 people will develop cancer in one form or another......thats a third of the population!! So lets get real Breastcancer care with your campaigns & other cancer organisations.... I suggest the title should be just that..... "Lets get real sbout cancer!"

if you really want to help why dont you launch a campaign for us all on the stupid PIP! They believe that if you can microwave a meal & make yourself a cold drink your fine!!  Apparantly in the world of PIP one doesnt need to shop, cook or clean.....it happens all on its own! Anothe magic fairy tale! 

 

Big hugs to you lovely Secondary Gals. To me you're not hidden away, like dirty laundry, but standing proud and tall. Xxx 

Member

Re: Is it just me.

Ladies I have asked the question where is this campaign been highlighted,where can it be viewed.xc

Community Champion

Re: Is it just me.

Hi HannahM (from BCC) for your reply and highlighting the campaign about SBC.  I think it’s unfortunate that it has not been flagged up on this part of the forum, only within this particular thread which from its title (Is is just me) you wouldn’t think there would be anything about the campaign. There are a few posts started by BCC staff asking questions to help with research (both in the Treatments and Medical Issues and the Living with secondary  Breast Cancer sections) which are very clear what they are about. It would have been good to have known about this campaign earlier, to be able to share the video and campaign and in fact I only found out about it and saw the video as one of my SBC friends features in it and she sent me a link. The only publicity about this campaign is on the main website page for the charity and if like me I don’t look at that I just come straight to the forum pages I would have missed it - as I’m sure have many other SBC and primary BC users of the forum. Please publicise this on this part of the forum, it is so relevant and it’s  nice to know we are not as forgotten as many of us feel.

Nicky

ps I’ve edited this to say I have seen a thread on the Treatments and Medical Issues part of the forum which highlights this campaign but it was only put on yesterday, not before or on the day the campaign launched.

Member

Re: Is it just me.

Hi ladies. I don’t have SBC thankfully, my primary was diagnosed in 2015 and I then had a recurrence in 2017, which was missed by the hospital I was then under, despite raising my concerns on two separate occasions. However, a dear friend of mine sadly died this year from mets to her liver, leaving a 9 year old and partner behind. Her symptoms were ignored by more than one GP at her practice, despite her history of invasive BC. When she was finally taken in to hospital as an emergency, they were unable to offer her any treatment, as her cancer had spread so widely. She died only 2 weeks later. Her little girl is being incredibly brave but will grow up without her mother and her partner is trying to be the best dad he can and doing a wonderful job. This is why I am supporting the campaign to make everyone more aware of SBC, especially GPS. I send all my love to all of you battling SBC, your determination is amazing. 💕

Member

Re: Is it just me.

Thanks Walsh x. It is beyond frustrating when the medics don’t hear you and it is so tiring repeatedly asking For symptoms to be taken seriously. (It took 7 years for my endo to be diagnosed). Reading other people’s experiences helps give me the determination to press on and ask to be taken seriously.

love to all xx

 

Member

Re: Is it just me.

Hi

Yes you must see to these pains they are real.As I said in email my doctors ignored my pain,and so did the hospital it’s times like this  you become angry,because you think it’s just you being over anxious because you had primary breast cancer and they do make you feel as though you are a hypochondriac,I wish I had pushed and made a bigger nuisance of myself,a year ago when I started to have pain in my hips and back,and shooting pains down my leg.

hugs to all.xxxx

 

 

 

 

 

Member

Re: Is it just me.

Hi 

 

first of all I my thoughts are with all those women with confirmed met bc. I was diagnosed in May this year with primary bc and having avoided chemo due to an oncotype score of 17 (I am 54) have just finished radiotherapy. 
I have started to take letrozol and have bisphosphonate infusions for the magic 5 years and whilst browsing the forum caught this string of posts.

When I was diagnosed I asked several times about how could anyone be sure it hadn’t already spread (I had 2 nodes positive) and was told I was being treated for primary so the lump in my breast was the first and foremost concern. Fair enough but as others have pointed out, since then there has been no mention of what to look out for should the cancer spread. 
I have my follow up with a doctor at the hosp in Nov and want to bring up how concerned I am about the back pain I have been seeing a physio for for the last 2 years. It is my lower back and right hip and right thigh where the pain comes and goes.
Also echoing others, several  times now I have come across the reaction to my primary bc that ‘oh at least it’s breast cancer - they are so good at treating it now’ It makes me feel like i should approach it like you would a broken hip or nasty virus. There is a popular misconception that breast cancer is pretty much curable.
I am glad to see the launch of the new campaign and hope it gathers momentum very quickly so that those with secondary get the full attention they merit and those with primary have access to the right information early on and treatment when needed. 

My thoughts and love to all xx

 

Member

Re: Is it just me.

Hi I was told I had a trapped nerve , I knew cancer had returned, after 19 years They wouldn’t listen , so even though I felt like a nuisance, I wouldn’t let it drop .Took 6 months for them to diagnose it xx

Member

Re: Is it just me.

Like you Hannah,I was told had athiritis,in hips,broke a rib went to A@E and still doctors did not click.xx

Was diagnosed with bone cancer in hips,pelvis and rib.

xx

 

 

 

 

 

 

 

Member

Re: Is it just me.

Thank you Hannah. So pleased this is getting some recognition. I was told I was vitamin d deficient for months before the doctor decided I needed scans. Turns out my cancer is now in my bones. The all clear at 5 years  should be abolished and everyone should be monitored annually for life with continued support and advice available. Best of luck with the campaign xx

Member

Re: Is it just me.

Hi

Thank you Hannah this is such great news to actually see this getting highlighted,will it be advertised in national papers,on TV,will there be leaflets.

thank you again.xx

Member

Re: Is it just me.

An article in today's Times has also highlighted BCN's survey of 2000 women where 41% had not had symptoms taken seriously by healthcare professionals before secondary diagnosis.

Only 13% of women said that they felt they had been given adequate information about signs of secondary breast cancer. That is just plain wrong! I myself was given little knowledge of recurrence but my primary was 24 years ago. I assumed things had improved! As more treatments become available for secondary breast cancer surely early diagnosis is as important?

Also the statistics for the percentage of women going on to have secondaries can be very misleading. My secondary diagnosis was 18 years after my primary so I would definitely have been in the "5 year so cured" category.

Wake up primary ladies, I say! 

Member

Re: Is it just me.

Thanks for the link.  Will have a read.

Member

Re: Is it just me.

Hi Nicky

 

I work at Breast Cancer Now and wanted to let you know that we have launched a new campaign today focused on secondary breast cancer.

 

The campaign is called 'The Unsurvivors' and aims to challenge the perception that everyone now survives breast cancer. We want to shine a light on the experiences of people living with the disease and have out recommendations to improve diagnosis, treatments and support so that women and men can live well for as long as possible. 

 

There's more information about the campaign here: www.breastcancernow.org/unsurvivors

And here is a link to the full campaign report

 

I hope this information is helpful. 

 

Thank you

Hannah

 

Community Champion

Re: Is it just me.

Interestingly there’s an article on the BBC News website this morning from Breastcancernow about delays in secondary BC diagnoses and how more education is needed!

Nicky x

Member

Re: Is it just me.

In Turkey at so WiFi not good never finished post will do when I return15th

brenda

Member

Re: Is it just me.

Hi nicky

Thank you for your email.you are on the same page as myself.The difficulty that we have is coming up with a solution to highlight and educate not just the public but the charities and the medical profession.Where do we go to highlight this.As this is breastc

Community Champion

Re: Is it just me.

Hi Walsh, and everyone else.

This issue has been raised many times with BCC over the years I've been a member, and by default having secondary BC as I only joined the forum when I developed mets.

I was involved in a focus group, again many years ago, as that year's Breast Cancer Month was to have a secondary breast  cancer awareness day - ironically it was Friday 13th October that year, hmmmm.  There was quite a bit of publicity around it and a lot of us spoke or wrote about how secondary BC affects our everyday lives.  This illustrated the ups and downs but also the reality of the situation.  There was also a badge of a pink bow outlined in black issued so you could wear and buy that instead of the 'pink fluffy stuff' that can annoy us so much.  All of the 'pink fluffy stuff' was dismissed by many of the SBC ladies (none of whom are sadly with us now) at the time, however it is still what the majority of charities produce.  However since then no real emphasis has been made about SBC which is strange.

I feel the message is still not getting across by the charities associated with breast cancer or the medical profession that breast cancer kills and it is the ladies (and men) who go on to develop secondary breast cancer that it kills.  This is a plain fact and no-one should skirt around the issue.  At the moment there is no known cure for breast cancer and it will always be in remission, hopefully for the majority for the rest of their lives, but for many of us it does come back.  There is no emphasis on education from any of the BC charities, or oncologists, to explain this and promote what ladies should look out for in case it comes back.  I have read many stories on here about how GPs have ignored ladies (who have had primary BC) with their very real fears that it has returned and as we all know getting treatment quicker helps with stabilising and controlling the spread of SBC.

The original idea to have a Breast Cancer Awareness month was way back in 1985 and I think the campaign has done it's job well.  I'd imagine most of the population of the world who have access to printed, televised and internet accessible material must know about breast cancer.  However I feel secondary BC should have a higher profile as that is the stage (of BC) that has the greatest impact as it's for the rest of your life, not the year that primary BC robs you of.  It certainly doesn't help when certain charities (not BCC by the way) use images and words in their campaigns that 'you've been cured' as I feel it belittles the reality that SBC kills.  Pink and fluffy makes it all seem so innocent and that you can be cured.

Nicky

Member

Re: Is it just me.

I am so sorry you have metastatic breast cancer it does suck . I don’t have metastic breast cancer but I live with the fear since being diagnosed I was by consultant and oncologist I would probably have secondaries very inspiring news I admit so five years out of treatment I never for one second do I think I am all clear . Every ache pain terrifies me doctors terrify ne I believe they should inform everyone who has had breast cancer because it’s not spoken about and dismissed very quickly . I can understand how it makes you so upset I have lost friends who had secondaries but I also have friends doing amazing xx

Member

Re: Is it just me.

Hi,

Yes I think there is not enough being done to highlight this.I hate pink.I do say to friends that I have metastatic breast cancer and they have been honest enough and said that they had never heard of metastatic breast cancer,only Secondary but they did not realise the severe implication of this.I have a work collegue how had chemo again for primary breast cancer and again she did not know what metastatic was.

To be honest neither did I until I was diagnosed in April this year with Mets to Pelvis,hips spine,and many in liver.I had a 31mm liver met and it has now shrunk to 17mm the other mets in liver are shrinking so may long it last.

Unless you are in our position nobody but ourselves know what anxieties we have to endure every time a scan appointment comes,We all know we are living on borrowed time,but the majority of the public are not aware.Its not the cancer that  takes us,it’s that THE TREATMENT HAS RUN ITS COURSE.

I honestly think there should be a campaign for Secondary Breast Cancer/Metastatic.for a month and maybe change the colour.I agree people are frightened to talk about this.

Another example.I know a women whose daughter was diagnosed same time as me with primary breast cancer,when I told her I had metastatic breast cancer she was horrified and said that she can’t tell her daughter that I have secondary Breast cancer as it would frighten her,What can I say.

As for pip try again I have the full amount awarded.

I felt as though I should not be asking for it.But I did not ask for this disease,and I have worked all my days.

love and hugs to all you girls under this horrible cloud.

xxxx

 

 

 

 

 

Member

Re: Is it just me.

Hi there,

I really feel there is still such a big stigma around secondary breast cancer, and it’s not talked about enough. Deborah James ( also known as bowelbabe) is doing a fab job on instagram etc talking about her secondary bowel cancer. 

My secondarys ( bone/ liver) showed up 16 years after my primary but I have told very few people because I know how people react. The pitying looks and the insensitive questions “ how long have you got ?” FFS!

If somebody is diagnosed with primary BC these days it seems like you are turned into a pink fluffy heroine warrior! If I meet somebody diagnosed with a primary I tell them that I too had it many years ago, but I don’t mention it came back because it obviously fills them with fear. However, I should be telling them, women need to know that the “5 years all clear” is not necessarily so!

oh I could go on

rant over

basically I get what you’re saying

x

Member

Re: Is it just me.

Totally agree with what you are saying I was told my lump was scar tissue from radiotherapy but 5 months later another breast cancer oncologist listened to me and I was told I had secondaries in chest spine and pelvis. Didnt feel like jumping about in pink tutus bras or dyeing hair pink. Also cant dye my hair on palbociclib as it thins and anyone on chemo shouldnt be dyeing hair or can have no hair (been there) so it is a bit insensitive I think. Also been told I dont qualify for PIP with ds 1500 form so have applied for it anyway so will see. Think it is unfair we should be forced to work fair enough if some people feel they can bur incurable cancer is tough physically and emotionally . Sending love and hugs Liz xoxo

Member

Re: Is it just me.

Hi,missy 18

 

Was beginning to think I was speaking out of term.as I was waiting for reply’s so thank you for yours.There is no donation boxes for Secondary Breast Cancer,Just Breast Cancer now,wonder how much of the donations collected go towards Secondary Breast Cancer,I am becoming very angry and frustrated at all the attention giving to Breast Cancer Awarness let’s tell everybody what can happen and why we need to highlight Secondary Breast Cancer As yet have not seen or heard a single thing about Secondary Breast Cancer we have two days to go for Breast Awarness month.

We have on the 18th October wear it pink.As you have stated where does it say 30% to 40% are living with this disease.Can I just turn that around and say 30% to 40% of us are dying from this disease. and that is why the hard facts need to be addressed.i feel we are just hidden away and that we have no voice,Surely we should be told how much of money donated goes to Secondary Breast Cancer.I have come across so many people who don’t even know what Secondary Breast Cancer means and what the future holds for those that have it.Thats my rant over.

thank you for replying.

take care.xxx

 

Member

Re: Is it just me.

Here bloody here I'm absolutely dreading think patronising pink was of celebs telling us to check our boobs etc there's never a mention of SBC or the fact that we are 30/40% living with this awful disease even after early stages of primary breast cancer its like we are periahs and our voices are not heard more reaseach is needed urgently to find out how and why this is still happening to us never mind glamourising breast cancer with silly pink bras tutus and other money profit making nonsense going to the big stores then what's left over going into already massively funded research for prevention early stage STAGE 4 needs more  thanks Walsh for bringing this up 👍

Community Manager

Re: Is it just me.

Hi @Walsh 

We just wanted to respond to your comment and reassure you that metastatic breast cancer is a priority for us and will play a big part in our upcoming work. We are planning to launch a new report and campaign during BCAM that will aim to improve the diagnosis, treatment and care of people living with metastatic breast cancer, as well as highlighting more widely what exactly metastatic breast cancer is. People living with metastatic breast cancer will be at the heart of the campaign and we will feature their stories throughout BCAM. The campaign is not just limited to BCAM though, we plan on this being a long running piece of work, continuing throughout the next year.

 

If you want any further information or have any questions about the campaign – please do get in touch with our campaigns team – campaigns@breastcancernow.org

Member

Is it just me.

Hi,

Just wanted to write something that is really bothering me.I was diagnosed in April this year with Liver many metastasis,spine,hips,bone.

Why is Metastatic Breast Cancer not highlighted when it comes to Breast Cancer Awarness month,or wear it pink on 18th October.Just read that there is a fashion show in Glasgow for breast cancer no mention of Metastatic Breast Cancer.Personally I think people are to scared to highlight that this disease can become a death sentence.

I hope that others can maybe help turn my thought around,just seems so unfair,that Metastatic Breast Cancer is not talked about when advertisements or breast cancer is getting talked about.