I wish I had breast cancer.??

[belinda]

Thank you 2catlady Helen, will definitely be popping in still. X

[HelenL_BCC]

Hello all, I just wanted to pop on to the thread to offer thanks to you all for being so supportive of each other on here over the past few days and weeks. We want the Breast Cancer Care forum to be a safe, secure space for everyone affected by breast cancer to talk and share experiences.

It’s such sad news that Kerry has died. I’m really heartened to see that many of you are signing the e-petition cornishgirl linked to, to call on the government to provide more funding for pancreatic cancer. I’ll be circulating this amongst the team here too.

Your conversation about the language used around a secondary diagnosis is a really interesting one. It’s a difficult and very personal issue, and we’re listening to the perspectives raised here with interest. And, on the subject of Breast Cancer Care continuing to raise awareness of secondary breast cancer (mrsblue raised this question yesterday, I believe), I wanted to assure you that the team is keen to reach out to as many of you as possible to help shape our future activities. I’ll be sure to keep you all updated once more details are confirmed.

Thank you,

Helen 

[geordiex]

I don't use the fb page prefer the forum although I have looked at the breast cancer care page that you 'like' but not a group page x

[2catlady]

Oh,Belinda,this forum will not be the same without you. You give everyone so much hope and you are an inspiration to us all especially us just starting this journey.
Please pop in occasionally just to say hi,I will miss your posts so very much,Helen xxxxxx

[belinda]

Thanks Linda, I feel a bit forumed out, will lurk awhile and post if I can be of help. I hadn't realised you had been here for so long! Hope you are still continuing to get better. X

[cornishgirl]

Hi Belinda, I would be very sad to see you go, you were one of the first ladies I met on here back in 2007, and throughout that time you have given so much support to many many people , Like you, I'm very sad that a lot of the ladies don't post on BCC anymore and now use FB instead, I feel much like you at times and feel like I should also flee the nest , I do sometimes, but then something happens, and I usually end up back here again, but like you I'm not always sure where I fit in anymore, maybe that's a sign to move on too , but I do hope you stay belinda, as the forums and especially the newly dx secondary ladies really need people like you.

Huge hugs to you xxx

[belinda]

Hi, yes I'm bowing out of being so active here, I've felt the most alone on these forums at times. Not here on the Secondary ones of course but it doesn't help if you ever start to read elsewhere.
Will still pop in to see if I can be useful! X

[mickey24]

Signed petition Michelle xx

[belinda]

Yes me too, all signed. Thank you for the link. X

[cornishgirl]

I have been very shocked to be honest to see the number of complaints made on the BCC FB Page, I just cannot understand why people would object to reading about the facts of breast cancer, on a breast cancer site, I have been equally shocked and quite saddened with many of the comments, as a fellow primary patient I just cannot relate to any of those views expressed by others like myself , to be honest its been quite an eye opener for me, and I can fully understand why the secondary ladies feel the way they do ,

What I can't understand is that when posts like this one from BCC are put up on some of the other breast cancer Sites/FB pages they seem to have nowhere near the same amount of complaints that BCC do, They do have the odd complaint from one or two people, but the vast majority of the comments are usually very supportive,

Anyway, I hope like everyone else here that BCC continue to raise awareness about all of the important issues that surround MBC , both here and also on their FB pages ,and don't feel pressured by the few to tiptoe around all these important issues just so as to not cause any upset . There really shouldn't be any upset, This is a Cancer Site ,

L x

[pumpkinsue]

Signed petition.

Sue XX.

[doodlecat]

Signed.  Thank you.

[elliedog]

petition signed xx

[geordiex]

petition signed x

[Magical_Moon]

Thanks for providing the e-petition link.
M 🙂

[cornishgirl]

I too was very sad to read that Kerry had died over the weekend, My heart go's out to Kerrys family and friends at this very sad and difficult time, Another young life lost to soon to this terrible disease . RIP Kerry, x

Also to say that a lot of the BCC ladies , including myself while not supporting the PCA Ad taglines, have signed the Government e-petition to provide more funding for Pancreatic cancer, I hope all BCC members will consider doing the same. 

http://epetitions.direct.gov.uk/petitions/48389

L x

[belinda]

Hello Karen, yes I agree with your posting.
Hope you are well at the moment? I visited Wellington many years ago now.

[belinda]

I'm really sorry to read this news, so soon. I heard there had been some awful comments made and I cannot understand that reaction at all. I hope Kerry's passing was as pain free as possible.
May Kerry Rest in Peace. X

[mrsblue]

Yes, I too had seen that Kerry Harvey's life has been taken by pancreatic cancer.

Let's respond to this very sad loss - and to the expressions of hate - by offering our sympathy, prayers (those of us who pray) and condolences to Kerry's family and friends at this time.

And to keep up the fight for more research into detection, treatment, prevention... and cure... for all types of cancer in the UK.

[Magical_Moon]

Just wanted to say I was very sad to hear the news this morning that Kerry died at the weekend of her pancreatic diagnosis. Sending sincere condolences to her family and friends.
Her involvement in the PCA adverts certainly caused a massive difference of opinion and heated debates. I hope all those insensitive people who sent her hate mail feel a tinge of regret for their actions.
She was a young lady, only 24 years old, who should have been afforded compassion and understanding for her predicament.
Like others have said in this thread, I have been amazed by the awful, selfish comments made by some Primary BC ladies on BCC Facebook.
I am a Primary BC lady who does NOT support PCA's adverts but I could totally empathise with Kerry and the frightening diagnosis she found herself having to cope with.
"Rest in Peace", Kerry.
M

[karenp]

Hi, I am Karen from New Zealand, diagnosed with a bone mets from the outset in 2011. I have been reading the forum with interest. Thank you for sharing, and the hope your positive stories give the many of us who read, but dont post.
Regarding whether we have a Chronic condition, my breast surgeon told me my situation was like a chronic illness, treatable but not cureable. With regards being terminal, is another way to look at things, the fact that we are all terminal! There being nothing more sure than death and taxes.
Karen

[Anna_BCC]

Dear mrsblue

Just to let you know that we are reading this thread with interest.  It is really good to see all the support being shared here as well. 

If you were wondering why there has not been a clinical response to the questions regarding chronic being a term used for metastatic cancer as yet, that is because our clinical team do not work at the weekends.  The questions have been passed on to them and they will provide a response as soon as they are able.

If it was a different response you were looking for, please point me in the right direction as it is entirely possible I have missed something amid such a lively debate and thread,

Best wishes

Anna

Forum Coordinator

[mrsblue]

Yoohoo BCC people, are any of you reading this thread?  A reply would be good.... sigh... I don't even know a (user)name of anyone on BCC who is supporting us secondaries, there was Clare Kemsley some time ago but I'm not sure if she is still around... could she or her successor be alerted to this thread?

[geordiex]

I can't find the comment cornishgirl how crass is that though does care just stop at a secondary diagnosis ? how selfish is that xx

[2catlady]

OMG,Cornishgirl,that's awful and so selfish . I can't believe some people. I'm sending you a huge cyber hug((())))
Yes,Belinda,that was my thought exactly ,the BCC may not do anything like that again.
It just seems we get knocked down every step of the way,such a shame.
Thank god we have this site where we can vent our feeling and support each other.huge hugs to everyone ,Helen xxxxx

[belinda]

Oh Linda, what an uncaring woman and the irony. I do hope overall there are more positive replies than this one if not BCC will never risk a dose of reality again. Which would be such a shame.

[cornishgirl]

OMG, ive just been pretty much told off on BCCs FB post from a primary lady that tells me , "There is a clue in the title "Breast Cancer CARE" I see this as a support site I do feel that on a support site that harsh comments like the one made by BCC should be so carefully controlled and public awareness should not be their first concern.   I may be wrong but I personally do not see it as primarily a public awareness sight, it's about care and support for each other. "

Am speechless ,  Doesnt the poster feel that the care and support include's Everyone whatever the stage of  disease? 

L x 

[elliedog]

I mostly agree with geordiex but that maybe because my dx is very similiar to hers. I do at times get very frustrated when people seem to think that MBC in the organs is worse than just in the bones. From the more up to date research I can see many of the new treatments work very well on the organs and there are many many ladies out there that stay NED (blondie is the perfect example). I also appreicate that it is easier to manage this disease in some cases than it is in others. I was, dx double whammey last February, had docetaxol Herceptin Pertuzumab and now Tamoxifen Herceptin and Pertuzumab. Nothing can be seen on my scans although in a way I might have been lucky because they found my liver met (less than 1cm)by accident, I had no symptoms. On the American sites there are many ladies with MBC living a long time and we all know someone that is doing well on treatment. I was told by onc that he has several ladies living well 10 years and more on Herceptin. He also said that there are those women that they suspect have MBC from the beginning and it is never found because chemo deals with it and they go on to live normal lifes. I was scanned because I was entering a trial otherwise I didnt have enough nodes effected to warrant a scan and I presented no symptoms,blood test fine etc. So although I have my emotional days I think I am lucky that for now I am managed and stand a good chance of staying that way. Who knows I might be part of that 2 - 3% that is cured, but Im not sure I will ever have the courage to walk away from treatment although I am told some ladies have with no re occurance. So anything can happen wheather your primary BC or MBC.

[belinda]

I 'spose this in a roundabout way shows why the PCA ad was wrong in assuming breast cancer was a disease to wish for. There are so many variations. Mrs Blue I completely understand about how to spend extra time wisely. I cannot master it at all.

[pam01]

I agree with Georgiex.....the natural extension of calling MBC a "chronic disease" is that there is a "terminal phase" when treatments have stopped working and all preparation is towards preparing for a "good death"....certainly all travel insurance companies deny cover for "terminal illness" and my onc has told me not to say I'm "Terminal" but that there are still treatments helping..........in some ways the issue is not so much whether MBC is chronic or terminal but more what does terminal mean!........in a recent edition of the British Medical Journal there was an article on terminal illness and its different courses...for example  there may be a gradual deterioration, (maybe like progressive multiple sclerosis or dementia): an up and down course but with gradual ongoing deterioration..(.maybe like chronic heart disease with occassional heart attacks). Cancer (on average) was seen as an initial plateau phase with only slight or no deterioration at the beginning with a rapid decline at the end. Of course that is not true for everyone and treatments may affect that...but if that is the picture then a chronic illness with a terminal phase fits quite well!xx

[geordiex]

terminal in my mind is when all treatment options have run out or not working but is just my opinion and I've never asked ,I was told at diagnosis last March that I was'nt dying ,that I could'nt be cured but could be treated ,had multiple liver mets and after taxol and herceptin nothing can be seen on scan ,I now continue on herceptin subcut indefinately x

[cornishgirl]

Sorry mrsblue, I only just saw your post, and as you rightly say this topic should probably be on a separate thread. 

Apologies, L 

[cornishgirl]

Thanks Lucy, It is confusing I think to a lot of people.

Just a few more thoughts and I may be completely off the mark , but diabetes ,heart disease etc, has a known cause unlike cancer ,and therefore already has established treatments that are known to work ,and certainly people with diabetes can live to a ripe old age if they comply with their medications, these 2 chronic disease also can be impoved quite a lot with diet/lifestyle  changes , Cancer on the other hand is a evolving disease, tumors can change their genetic mutations and is thought of as a progressive disease, so we are forever having to find new treatments to keep a cancer stable or at bay for a very long time.

Unlike diabetes ,cancer patients don't know if a paticular treatment will work for them, or it may work for a time, so I wouldn't of thought at this moment in time MBC could be re classified as a chronic disease like other chronic diseases , though in some cases it can be treated like one, Like Dawn says,bone Mets can be keep under control for many yrs , but is this the same for brain Mets, lung Mets, or liver Mets? 

I know diabetes and other chronic diseases can have complications, but I don't pesonaly at the moment see those diseases as the same , but thats just me.

I think its fantastic than some types of MBC are being treated like a chronic disease by  Drs now, and hope with all the new treatments coming along all the time that all MBC will one day become a true chronic disease like diabetes and heart disease, and managed for the rest of life . and also hopefully without the need for treatments to have such dilibateing SEs , as some of the chemo's do. 

The good news is, I read last yr that there are over 500 new treatments for cancer in the pipeline, and hopefully NICE will be willing to fund them , but I suppose that might also be the next hurdle .

Another thought that has just occurred to me,  If BC Mets is now seen as a chronic disease, is this why the general public and the recent PCA  Ad campaign now think that BC is a good cancer to have?

Anyway, I'm rambling now and these are just my own thoughts ,and I may be completely off the mark with it all .  

L xx  AKA confused.com .

[mrsblue]

Another interesting aspect of the discussion - MBC as a chronic / terminal disease - maybe we need a separate thread for this discussion? 

I have my own views on the topic as it affects myself, which I won't explain on this public forum - I hope you all understand.  But when I was dx with liver mets, 4-and-a-half years ago, I never imagined I'd be living a "normal" life again.... and sometimes I'm not sure how to use the unexpected "extra time" wisely.

[2catlady]

Hi,yes,insurance call us terminal ! But,try to get a PIP payment and because you are not going to die in 6months you are not terminal . I think it all comes down to money and not wanting to pay or cover .
I personally class myself as terminal as I'm unlikely to ever see 60 but I'm praying I'll see 50 in a couple of years. But like all of us with MBC you never know what's around the corner regarding treatment or progression so that ticking time bomb follows us around ,sometimes you can hardly hear it ,other times it ticks very loudly.

[Lynnq]

I find this interesting and wonder if we should still be saying 'terminal' breast cancer which I have heard mentioned and assume they are referring to MBC.
In the past week i was offered travel insurance, but when i received the policy and read the small print it stated that i should not have been diagnosed with a terminal illness. When i rang them they said that i could not be covered if i had been told that i had a terminal illness. This is despite the dozens of questions that i answered whilst going through the application. (None of which asked me if i had a terminal illness...it was hidden away in the small print)

Today i rang another company who asked all of the same questions and said that they would cover me but exclude my -"metastatic breast cancer' -

I then told the girl about the other policy/company and she said "oh sorry if you have been diagnosed with a terminal illness then we can't cover you at all not even excluding the MBC"

My onc said to me on diagnosis....."we can't cure you but we can treat you.....sometimes for many years, and we are beginning to see this more as a chronic illness"

Confused??

[Tinkerbelle]

Edited  23/02/14

Dawn - I can't find it now either.

[geordiex]

chronic /manageable to me its the same and other chronic diseases have thier own complications ,treatments now in my mind wether for bone or soft tissue mets have revolutionalised the treatment of this disease as. Blondie to name but one has proved ,my onc has someone on herceptin since the original trials 10+ yrs so being a relatively new treatment with the likes of TDM1 no one knows statistics yet anyway ,so chronic or manageable ,these drugs can control/ manage for many years and no one knows how long x

[Lucy_BCC]

Hi Cornishgirl
I have passed your comment on for our clinical team to take a look at
Best wishes
Lucy

[cornishgirl]

An interesting topic and one that causes lots of confusion I think, In its simpler term a chronic disease is a long term condition that cannot be cured , so in that sense some people might think of cancer as a chronic disease, However, compared to other chronic diseases, Cancer is a progressive disease regardless of lts management, Diabetes for instance can be controlled for many decades , and while MBC can be controlled in some cases for some yrs , and treatments can keep MBC stable  , MBC cannot yet be thought of as in the same category as most other chronic diseases .  Researchers are hoping that one day cancer will become a chronic disease  instead of being classed as a terminal disease , and some drs are already treating some forms of MBC like a chronic disease that can be managed for many yrs. 

http://www.bcaction.org/2009/03/21/treating-breast-cancer-as-a-recurrent%E2%80%94not-chronic%E2%80%9...

http://mbcn.org/developing-awareness/category/mbc-fact-a-day

http://www.sciencedaily.com/releases/2012/03/120329170218.htm

Not sure if BCC can raise any clarity on this as I think most people find it confusing including me!

L x

[pam01]

I think the argument is a false one. Secondary cancer is chronic in the sense it is not an acute illness for example an acute infectious illness. Chronic does not mean you will not die of it. Many die of chronic illnesses.
..eg complications of diabetes or chronic heart or renal failure..to name but 3. I note wikipedia list cancer under chronic illnesses...not that it is the be all and end all of definitions! The question of what to call it is personal choice.xx

[belinda]

I don't see BC as a chronic disease myself. I consider it is manageable, sometimes for years. A few years ago many with bone mets often thought as long as their bc remained in their bones things were ok. I remember a forum user going through successful treatment for brain mets and saying although breast cancer was still in her bones 'you don't die from bone mets.' Sadly she did as her bone marrow was effected and she died of pneumonia. Once you have bone mets you are at risk of developing marrow involvement which can cause a risk of chemo eventually becoming impossible.
If you are diagnosed in your 60's and have a slow growing cancer I think it is possible to then consider yourself as having a chronic disease. I was bone mets only for 5 years before I went on to develop bc elsewhere.

[dawnhc]

I haven't been joining in the discussion 'cos I have to confess I don't do conflict very well. I do feel I want to comment on the remark about mbc becoming a chronic disease. I didn't see the remark you are talking about tinks but I suspect the 2ndaries being talked about would be bone mets. I have certainly heard frequently the comment about this. It is down to so many more treatments becoming available that are working well for some of us. My own response to herceptin has been quite amazing. I was originally diagnosed with bc 24 years ago and had several recurrences/new primaries along the way. I made the 'magic' 5 years when my hospital moved patients to yearly checks at 5 yrs. I even had that yearly clinic in my appointment card when bingo! another primary. From then on it happened about every 18mths - I would just get through chemos, rads etc., coming out the other end and it would hit me again. Secondaries - very extensive bone mets - came along 12 years after first dx. Herceptin hadnt been around that long and the fight was on to get it for primary her2+ patients. My onc found tissue had been checked on the last surgery I had and was positive. How do I know it was herceptin that did it for me and not just the chemos I had finished? Well I had a lot of very swollen lymph nodes around my neck and jaw right up to under my ears and within days of my first dose of herceptin they all vanished. I have had no further recurrrences since then.  (Hope I havent wondered too much off the point). It is quite possible that I could die from something totally different whilst my mbc is being treated with drugs that the cancer has not as yet found a way round and even if it does I know there are now other drugs that have been made available through the Cancer Drug Fund that could be rolled out. Seeing as I was first diagnosed with bc at the age of 45 and will be 70 at my next birthday I think you could say my disease was now a chronic one. I don't see this label being applied to other forms of mbc just yet and of course those of us with bone mets know that it could so easily spread to our other organs tomorrow. 😞

Dawn

xx

[geordiex]

I think in time mbc will be managed as a chronic disease ,some ladies on here have been living well for 10 years plus so far and thats amazing ,and that is with reletively new treatments so statistics for those treatments can't possibly be known yet ,thats why research and trials are naturally so vital to continue this amazing work ,and give mbc patients the hope and treatments we need to live healthy x

[cornishgirl]

Im not really sure if my view is relevant here, but I thought a chronic disease was a disease that is managed and treated for life and one that you no longer died from, but im not 100% sure on that.

hopefully some of the other ladies will know better.

L x

[Tinkerbelle]

I've just seen a post on FB that says more and more ladies are living with mbc as a chronic disease (I assume like diabetes etc.).  This was by a lady with mbc and was picked up by someone else.

Do others feel the same - that this is a chronic disease?

I can't feel that my illness is a chronic disease - this may be because I'm newly diagnosed and waiting for the results of other tests that may change my prognosis considerably, but I don't think I felt it was a chronic disease before I knew I needed tests.

To me it feels like a post-dated expiration sentence.

Is this how we should be viewing ourselves?

Tink x

[Tinkerbelle]

Deleted as I appear to have got it wrapped round my neck.

[Jan2010]

Hopefully, this is not just a one-off discussion and it just shows that the real facts have got lost amongst the pink and fluffy feel good stuff. Please BCC, keep these facts visible. I am saddened that the FB comments should be so ignorant to the imbalance of primary vs MBC awareness/funding. How can anyone with a bc dx be ok with that?

[2catlady]

OMG! I'm shocked by the comments on FB (I'm too reading through the link as I also don't belong to FB)
Belinda,I totally agree with you about those comments,the comments saying thanks for depressing me ,that bcc have put a negative slant on BC!? And one person felt physically sick and bcc should of had more tact ???!!!
God,you feel like shouting have a day in my shoes,you selfish women. At least they will have the chance to see their children grow up,marry ,have grand children. Grow old with their husband or just grow old.
Yes,I feel physically sick and depressed too because I won't have the chance to do or see them unless a miracle occurs or I'm really lucky.

[cornishgirl]

To be honest I'm slowly loosing the will to live on facbook, Since when did primary breast cancer patients become so wrapped up in self preservation and loose all sense of compassion and humanity for those walking the same road as them?.

I have been shocked and deeply saddened by some of the comments , I'm actually feeling quite embarrassed and ashamed to be called a primary right now as I just cannot relate to any of those selfish attitudes, I never knew fellow cancer patients could be so self absorbed and cruel, I'm speechless.

Please keep up the good work BCC, MBC deserves much more recognition and equal support from all the breast cancer charities , and that includes ALL of their members!!!.

L x