I wish I had breast cancer.??

[Tinkerbelle]

Hello All,

I think some of the problem is that too many people don't think of those with secondary cancer because they are largely invisible - unseen and unheard.

All this pinkification of bc has led everyone to believe (including bc patients themselves) that everything is fine - some of the comments about 5 years are a bit deluded.  My feeling is why are these statistics so shocking and upsetting - why don't we know this truth already?

Some of the comments mention that they expect support from BCC and what they mean by support is not to tell the truth.

Referring to all those who have finished treatment for primary breast cancer as 'survivors' also gives the impression that bc will never raise its ugly head in their lives again - no wonder people think they're cured.

I once saw a lady wearing a t-shirt that said 'I've survived breast cancer' and in smaller letters underneath 'treatment' which I think is closer to the truth.

Breast cancer is ugly and it may be time for it to dress appropriately.

Tink x

[belinda]

I have quickly scanned some of the remarks that have been made via the links here, I don't belong to Facebook. But I get much too upset when I see some of the remarks about stage 4 being depressing, scary, I just don't handle it well. I have struggled and at times felt awful when I have felt ridiculously upset and exasperated by some remarks and assumptions. It has sometimes felt, to me, that not only should we keep a low profile so as not to upset but those that make the 'depressing' remarks don't seem to care if we then happen to stumble on them, read them. They can only relate to themselves and our feelings are not taken into any consideration. I understand how we must represent other's worst fears but to read comments like 'thanks for depressing me' I want to say 'how do you think I feel, how do you think my family feel?'

[2catlady]

Well said ladies. Yes,MBC has had more coverage and recognition than the actual MBC day!! And thank god for that! We are not the scary boggy women that should be hid away in case we scare anyone!
Thank you too the primary ladies that have supported us.
Take care and hugs,Helen xx

[carolihne]

I am very sorry if some of the secondary ladies feel marginilised by those with primary BC.  The sobering reality is that 12,000 people a year still die from BC and any of us could get a reoccurance or spread at any time.  I find it interesting and helpful to read of how some of the secondary ladies are coping with their diagnosis. Sometimes i feel a bit of a voyer intruding on their private battles, which they are brave to publicise,  but what they print is the stark reality of living with a secondary diagnosis and it is something we all need to be aware of in order to improve research, help raise funds and have empathy for others. Just my opinion

Caroline x

[geordiex]

I passed comment on that post ,I think comments being made are rather cruel to us secondary ladies we know its scary ,but even when I was first diagnosed I knew there was a risk of secondaries your never prepared but thats the way it works ,awful being treat as lepers ,I also think if primary ladies can see that you can live with secondaries it may not seem quite so daunting ,although still scary x

[mrsblue]

A good discussion, here and on Facebook - it puts METASTATIC breast cancer more in the spotlight than the non-event that was "Secondary" bc awareness day in Oct 2013.

I don't use Facebook myself, but it is good that we can read the many posts and comments about "living with or dying from" bc.

A few comments... there doesn't seem to be much discussion about the pancreatic bc ad.

I can't see any mention of those such as myself who received a METASTATIC diagnosis at or very soon after the primary bc diagnosis.  (in my case it was 3 weeks).  People who don't like to be reminded that their cancer might recur should stop and think about what we are living with.

[belinda]

Really!? That's good to hear Tink and how sad they felt unable to do so before now.

[Tinkerbelle]

Evening everyone,

I think one of the most interesting things on the BCC FB page is that people are coming on and stating that they have mbc, which I don't think they did before. 

The amount of likes that the status has (as Cornishgirl said) is one of the highest BCC has had recently and  shows that this is an issue that is important to many people.

Tink x

[belinda]

It's good to hear others are 'liking' the message, I hope it helps everyone. I know some women have no idea of the possibilities of mets and there have been newcomers posting here that were quite in the dark, had been to their GPs many times with various symptoms and had begun to think they were making a fuss.

[Jan2010]

Thank You for posting the facts, BCC. I fully support putting the statistics out there, please keep doing this so that the 12000 women who loose their lives every year and those living with stage 4 are not "brushed under the carpet". I am sorry, but no one with a breast cancer primary dx should be offended by the fact that they are at risk of recurrence or metastatic bc or that after 5 years they are "safe". Time to bust the myths and show how the facts, maybe less people will think BC is a "good cancer" to have. BC charities have done well in promoting awareness of primary bc, maybe the same can be done for secondary bc. Liked the status on FB, so surprised that so many primary ladies state that these facts were unknown to them, or they didn't need to know they are at risk of recurrence/mets??..

[cornishgirl]

We must ALL fight to raise awareness of secondary breast cancer , being a primary BC patient and having a "Im alright Jack attitude" and not wanting to acknowledge and support others who are currently not as fortunate as them  , is very very sad ,and utterly selfish in my opinion. Being treated for BC, however good the prognosis doesn't make any of us immune to some of the harsh realities , We ALL need to work together to Stop this Primary/Secondary distinction, There should never be one , I find it disgraceful , breast cancer is breast cancer , We  need to stand together on this and be united as ONE ,

To all the Primary patients on BCC, Please stand up and show your support on facebook , its a lonely place being Dx with breast cancer , but no where near as lonely as for those living with secondary BC. This issue affects everyone ,  don't turn your back because it doesn't affect you right now , the sad truth is that one day it just might.

Great to see 314 likes so far for this status BCC, its very encouraging to see amongst some of the more negative comments, that the vast majority of  people reading your status fully support you. 

L x

[Mema23]

Hi Anna, I would reply with my opinion, but it's not possible to be anonymous on facebook and I still have friends who dont know of my secondary diagnosis. I would hate them to find out through facebook! But I do thank BCC for your facebook post, it's good to know we're not the forgotten 30% x

[Tinkerbelle]

I just popped over to a FB group of which I am a member but rarely post on (Breast Friends) - as it is a closed group you have to apply to join and give some details of your diganosis, but there is a mix of ladies on there with varying diagnoses including primary and secondary.

Everyone posts about their treatment and asks for support and eveyone (regardless of diagnosis) offers that support.

A lady yesterday apologised for asking when others were having a difficult time and was told that all concerns were valid and that her concern (tiredness quite a while after treatment) was a valid concern and she received lots of replies and support as did the lady who had had progression.

That is how I feel it should be.  It's all crap - we're all in this together.

Tink x

[Tinkerbelle]

Hi All,

'It would be really good if any of you were able to share these opinions on FB as well.  The idea being that a balanced all round view of opinions is then offered publicly.'

I'm not sure if I dare say anything - I might get lynched.  I even edited my original post to make it less scary.

You can see why there are separate groups for those with mbc.

I think part of the problem is that we, as stage 4 patients, are the embodiment of the primary ladies' worst nightmare.

When I was diagnosed with my original primary bc I thought we were all in this together (all cancer sufferers), but with the pca ad and the responses on the forums from those with the same form of disease I am really saddened to find this is not the case.   I feel supportive of all of the ladies regardless of diagnosis and am upset to find that they are not so supportive of everyone.

I definitley think if you don't want to know any depressing statistics you shouldn't be on a breast cancer page.

Tink x

[Anna_BCC]

Thank you for your positive feedback

It would be really good if any of you were able to share these opinions on FB as well.  The idea being that a balanced all round view of opinions is then offered publicly.

We are not here to 'take sides' but to give space for people to share how they feel and encourage all to use the spaces available to do just that.

Best wishes

Anna

[cornishgirl]

Well said Belinda, Massive Hugs to you .

L xx 

[belinda]

Meant to add I've just had the standard reply from the ASA. Am I being a bit pessimistic to feel IF the complaint is upheld the result will count for little after all the attention, at our expense, of the I wish campaign?

[belinda]

Wow a good read! Thanks for the Facebook link L.
Shame about the old we can beat this, thanks for depressing me messages, it always feels such a slap to the face. Excuse us while we die quietly so as not to frighten you. Those who are fearful and want to stay away from the harsher facts I feel your fear. If this is not for you stay away from cancer sites. For those who still do read sites such as this one I would say read the truth, find out what's happening, new drugs, symptoms not to ignore and it might, it may help you live longer if you act on suspicions early if you ever have the need to. You have had a cancer diagnosis, there is no 5 year all clear and positivity will help you get up in the morning, sometimes. But it won't do anything else. I've lost some really good friends to this. Many were stronger than me, braver than me but they died before me. I have had some good responses to treatment and that is all. If we lived longer through positivity I wouldn't stand a chance. I believe my good friend Marilyn, marilf on the forums helped me live well for 4 years through her knowledge. I asked for a chemo which she had spoken to me about and luckily it worked well for me for 4 years. She passed away last December and her knowledge helped me enormously. Meanwhile many of us are living well when we can, enjoying life when we can. Instead of dare I say being negative about reading the truth of a breast cancer diagnosis use it to build up your knowledge. Knowledge is power. I feel to use a breast cancer site but then complain when there is an acknowledgement of the 12,000 women that die every year....speechless really.

[cornishgirl]

I agree Tink, I think many people assume when BC patients reach the magical 5 yr mark we are home and dry, but this is not the case with breast cancer, unlike some other cancers breast cancer doesn't have a 5 yr all clear,  The longer a breast cancer go's without recurrence, the risk of recurrence continues to drop, but it doesn't go away completely, that is why an oncologist will never say we are cured, Breast cancer can sometimes still recur 5/10/20 yrs later so we must always remain vigilant .

I personally reached my own 5 yr mark , and was re dx with another primary on my discharge mammo, my 2nd primary was a completely different breast cancer to my 1st primary ,  so sometimes people can also be dx with a different tumor type as well.

After BC treatments , we all need to be able to live our lives and not to dwell on the "What Ifs" as that would be a waste, but we must also be informed and know what symptoms to look out for,  continue to remain vigilant and not to become complacent. 

L x

[Tinkerbelle]

Yes,

Well done BCC!  I too am a little disappointed by a lot of the reactions of posters on the BCC forum, but I am almost more concerned about the number of people saying they were looking forward the five year 'milestone' as they put it.  What do they think happens when you get to five years?

Tink x

[Mema23]

Yes, thanks to BCC for your facebook status. I'm sure it's scary for some people but maybe if more people are aware of the chance of secondaries, then they may pick up on their symptoms earlier. How many of us I wonder, put our bad backs down to middle age aches and pains only to find we had bony mets!

[2catlady]

Yes,as cornishgirl said. A HUGE thank you BCC for that.
Yes,cornishgirl,some people are so selfish ,really disappointed about that one comment from a very selfish lady.
Helen xx

[cornishgirl]

Well Done BCC for your recent Facebook Status ,( Living with or dying from breast cancer?) Just wanted to say a Huge BIG Thank You to You, !!!

Am quite sad and disappointed by some of the comments made though, and its a shame that"some " people can't see beyond their own circumstances ,and don't feel it important to be factual about breast cancer , BUT.... The general public Need to know the truth about breast cancer, and the real facts, even if some people don't want to hear them, They are Real and they exist, and we CANNOT keep hiding the harsh realities of this disease just because some may find them uncomfortable to read, 

Well done again . The public need to know that breast cancer is not a good cancer to have, and certainly not  a wish for disease 

https://www.facebook.com/breastcancercare

L x

[Tinkerbelle]

Hi Cornishgirl,

Yes,  I got the same reply.  I read the article and right at the bottom it says that pca are still running the I wish...... AD on TV during the second phase.

I thought the ASA covered broadcasting as well.

Tink x

[cornishgirl]

Hi Tink, 

The PCA Ad Campaign has now gone on to stage 2 regarding symptoms, The !st stage was supposed to shock with the "I Wish I Had...." to get the initial media attention, They haven't withdrawn the comments just moved on to the next stage ,and left all the upset behind, (no doubt hoping it will all be forgotten).

Like everyone I expect you have all had the same reply as me from the ASA , they are still investigating and ask for patience, as they have received a lot of complaints about the PCA Ad, ,but they can only investigate the 3 Press Ads , and not any editorial stuff ,or the video posted on you-tube, as they said because the video didn't ask for any donations it was out of their remit.

All we can hope now for is that The 3 Press Ads are upheld and that PCA are forced to apologise , though I doubt they will, but at least it will send a message out to the world and the cancer community that ADs like this are very wrong and totally acceptable .

L x 

Edited to add a link about this, http://www.thedrum.com/news/2014/02/07/pancreatic-cancer-action-follows-i-wish-i-had-breast-cancer-a...

[Tinkerbelle]

Hi Jenifer,

Yes, it was outrageous.  Cornishgirl and I have been vocal about it on other sites, but the amount

of misinformation about breast cancer and some people's views and ideas about it are staggering.

I think this was a good opportunity for a bit of education about breast cancer that was missed by BCC.

By the  way, has anyone heard from the ASA.  I know that pca do not have the 'I wish.......' part of the campaign on their website and have seen that one of the ADs in Westminster Station does not show the 'I wish.......' part either.

Tink x

[belinda]

My thoughts exactly L.
I thought I'd read all the outrageous remarks until that advert Jenifer.

[Jenifer]

Hello Belinda.

I don't post on here as much now but I just had to come on to vent about that disgusting advert. Only we who have been diagnosed with BC and gone through such terrible mental and physical trauma can understand why using those words was so, so cruel and wrong.

[cornishgirl]

When I was looking at all the breast cancer FB pages I have to say I did feel much like you belinda , BCCs page is so colorful and busy, and focuses a lot on the pink stuff and fundraising,  (not saying that fundraising isn't vitally important, because it is, but maybe it needs to be balanced more equally with the educational side of breast cancer, I was quite disappointed for instance that BCC didn't mention the PCA Campaign on their facebook page , to enable a discussion about debate about that, Breakthrough and Breast Cancer Campaign both featured the issue on their pages and therefore people were able to air their views and leave their comments.  I was surprised (Sorry BCC) that apart from the initial response to the PCA campaign that you didn't take the opportunity to raise the issue on your facebook page too like others did.

L x 

[belinda]

Hi again, that's ok, honest, I mentioned our forum as I was wondering if you had received your diagnosis and thank goodness we can talk freely here so no apology needed.
I hope all goes well for you, the waiting is so stressful but with your family history it must make it even more so. Again best wishes and good luck.

[Wheezy]

Thanks, sorry I hijacked your forum, I thought this thread was about the media. I've been following all your comments, I had my referral the day before the story broke so was disgusted by the PCA (not the people as in shock people say inappropriate things, like me!!)
Thank you for your best wishes, I'll leave you alone now

I'm all over the place.

[belinda]

Hi again, you don't need to apologise here Wheezy, this is the secondaries, stage 4 forum and we are very honest and open here. Very sorry to read your Grandmother was so young when she died. Good Luck with your appointment.

[Wheezy]

I have my referral app to the breast clinic on Friday & freaked by it if i am honest. My natural Grandmother dies of BC when she was 26, I'm 36 with rash lump & sore breasts, sorry I know from my 2 weeks on here probably too much info for this forum, but so worried

[belinda]

Hello Wheezy, I'm not sure where you are treatment wise but just a 'Hi and good luck with whatever is next..'

[Wheezy]

Sometimes there is too much choice, I know every charity & heath issue has to have coverage but there are ways & means, if BCC & it's members posted on here then the link to Facebook(FB)/Twitter more people would stayed on here.

I'm new to the forum but have found people amazing & wouldn't feel happy (currently) acknowledging either the FB or twitter as both are set to public....

Organizations need to understand how to only have 1 portal to promote but use other to get their site noticed.  I'm not an expert, but am aware of how it works.

Wheezy

PS please no-one take offence (I'm scared) and learning about this stuff for my business

[belinda]

It's so frustrating here sometimes. There used to be many, many more posters here but a huge number of them have switched to using Facebook groups set up by others stage 4 and especially for Stage 4.
I don't like Twitter or Facebook so I carry on posting here but clicking on the Breakthrough link, thank you L, I was impressed by the style of it. BCC's page always seems lively but at first glance, at times, it can look like a lifestyle site.

[Tinkerbelle]

I agree Cornishgirl, if you can't talk about breast cancer on breast cancer website what is the point of being on the darn thing.

I don't know if many people saw the statistics thread started by Angelfalls but a lot of people weren't that keen on knowing the more unpleasant statistics (although it was never quite agreed what those were).          

I think that we try to avoid scaring people and how many of us have come onto here (me included) scared

and desperate for someone to tell us that we still have a future.  I think some people will feel that if we broadcast the truth about bc we are taking their hope away.

The difficulty is finding a way to balance truth and hope.

I do agree that there should be no misinformation and there should be clarity of information - Dr. Chris Steele was/is I believe a GP and probably had to get a researcher to google breast cancer for that phone-in.

The only place mbc seems to included in the overall scheme of things is in statistics, which then gives a false impression.

Tink  x

[cornishgirl]

Its bad enough when the general public have those views, but when a breast cancer patient has them too its so very frustrating , OK ,Some people don't want to know everything and would rather bury their heads in the sand, and that's OK ,and it is their right, BUT.....  at the same time you would be very hard pushed to find a cancer forum, or any cancer facebook page even ,where the real Issues surrounding Breast Cancer are not discussed, and rightly so ,because If people can't tell it as it is on a Cancer forum/site where can they? The answer I agree belinda is I guess don't use cancer sites, then those that don't want to know  don't have too.

L x 

[cornishgirl]

I saw the piece on breast cancer on this morning today , and found myself shouting at the TV in response to DR Chris Steele answering questions to callers during the phone in , he really didn't seem to me to be very knowledgeable about breast cancer at all, I find it so frustrating watching stuff like this , why oh why can't they get someone on these things who knows what they are talking about I really don't know, but its no wonder the general public think as they do.

L 

[geordiex]

but we all know once you've had cancer theres always the risk of it coming back unfortunately xx

[Jan2010]

The media coverage around the topic can be misleading, that's why it may be so shocking to hear the figures.
http://uk.tv.yahoo.com/morning-corrie-39-sally-talks-her-real-life-114600139.html The story ends with the statement that Sally has a good prognosis and is cured.

[2catlady]

Hi,Belinda,yes,your huddy is probably right. Yes,I think the 1000 women are just dismissed as they might upset people and the pink happy bubble that seems to be the face of BC. but not singling out that woman too,but does she not realise those 1000 women had husbands,sons ,mothers,fathers,daughters,partners ,sisters,brothers and friends too. They were loved,they lived and deserved to be acknowledged. So thank you breakthrough for acknowledging the 1000 women that this not so pink fluffy disease kills every month.

[Guest user]

http://www.huffingtonpost.com/elaine-schattner/a-new-metastatic-breast-cancer-alliance_b_4098412.htm...

I am a board member with MBCN one of 16 breast cancer groups (including Komen, Avon etc) that are getting togehter to call attention to our metastatic reality. The alliance was announced on Oct. 13 last year. Each group posted some metastatic fact to call attention to the news .Komen posted the statistics for metastatic recurrence on its FB page. "Thanks for ruining my day!" was the response from one early stage person. This is a real issue--people are so use to cheering on "survivors" they honestly don't know the whole story.

[belinda]

Yes I saw that comment Helen. I was discussing this with my husband just now and I said how nice and polite we all are, Sometimes almost apologising for depressing people, upsetting people with our statistics but how this is also our undoing. The woman who complained on Breakthrough, with her comments she has just dismissed those 1,000 women and their families. As long as her daughter, her husband are not upset. Not singling out this particular woman but this is the root of the problem. But how about if you don't want to read such articles don't go on a cancer website? Or bookmark a section you are comfortable with. That's your choice. Leave us to write about it, discuss it, share and support each other. It's so isolating, I still feel scared, lonely.

Hello Jenifer! Good to see you.

[Jan2010]

I saw the Breakthrough ad and one must assume I suppose that many primary women choose not to ask and prefer not to know.

[Jan2010]

Could not agree more! Hope Team Darwin & PCA are getting to read this.

[cornishgirl]

Brilliant rebuttal EnglishMajor , Think Team Darwin should be sent a copy!!

L x 

[2catlady]

Brilliant of breakthrough cancer ,thanks cornishgirl for link. Did you see a fellow BC sufferer saying she thought her daughter and partner would NOT appreciate the information of 1000 women dying of BC helpful. I do think we are fighting a losing battle ,if BC sufferers won't acknowledge that BC kills never mind the public.
Helen xxxxxxx
EnglishMajor,thank you ,fantastic xxxxxxx

[Tinkerbelle]

Englishmajor,

That was a brilliant rebuttal, especially about the judicious (or otherwise) use of statistics.

Belinda - I can't fathom why they thought it was necessary to go to such extremes, but I wonder if Ms. Stunt was swept along to a certain extent by her advertising team as she couldn't give a sensible reply as to why they had gone with that AD only the statistics regarding pc survival rates.  She said the AD was shown to breast cancer patients and they all approved.

Part of the damage I think is the possible public perception that  pc = death bc = cured.

In terms of emotion, I agree that I too must be lacking in emotion. It isn't that people have been emotionally upset, they have been emotionally scarred by this.

I don't think the ASA will do much.

Tink x

[Jenifer]

Breakthrough also sent a message to the Newsnight programme that Gloria and the two PCA women were on and I was delighted to hear it read out.