Hi Carobel, sorry you have had to join us but welcome. I'm not quite in the same boat as you but i have had peural effusion. My sbc started in my skin as er+, her2-. It then changed status to er- so like you i am now triple neg. I asked the onc whether it could change back, thereby allowing me to have hormone tratments but apparently it only changes one way..just our luck!! I had a pulmonary embolism which i got over with daily injections for 6 months. This april i had 2 pleural effusions followed by pleurodeses which sofar seems to be 'holding'. I have had weekly taxol amongst lots of others but nfortunately it didnt wolrk long for me. Have just finished carbopaltin and at last scan was stable. Hope you find the forum useful, i certainly have, xx
Hi Carobel, sorry you have had to join us but welcome. I'm not qite in the same boat as you but i have had peural effusion. My sbc started in my skin as er+, her2-. It then changed status to er- so like you i am now triple neg. I asked the onc whether it could change back, thereby allowing me to have hormone tratments but apparently it only changes one way..just our luck!! I had a pulmonary embolism which i got over with daily injections for 6 months. This april i had 2 pleural effusions followed by pleurodeses which sofar seems to be 'holding'. I have had weekly taxol amongst lots of others but nfortunately it didnt wolrk long for me. Have just finished carbopaltin and at last scan was stable. Hope you find the forum useful, i certainly have, xx
Welcome to our forum you will find help from a lot of ladies one being our Nicky who is very good with the heart trouble. You may like to start a new thread on the treatments and medical issues go back to the board and you will find it there. There is a thread on page 2 but I think your circumstances need a new thread.
I have not got heart trouble but I do have a chest wall tumour I do have it in the bones and now in my liver and lungs and I am on paclitaxel (taxol) mine is 12 x weekly with a possible chance of 18 weeks.
As Carolyn has said you will find a lot of activety on the Bone thread. Good luck with some answers that are more positive to you.
Love and (((hugs)))
Pleasant, I have just read your apology - thank you. I hadn't realised I had started reading this thread on page 2 instead of this current page (3). Everyone else has posted such sensible things since! I haven't gone to the website mentioned, and I have absolutely no intention of ever doing so. But thank you for the apology.
My thanks to all who have posted positive vibes here after Pleasant' s (unpleasant!) post! As you all have said, it's not something I want rammed down my throat when I already know how low my chances are of actually living long enough to claim my pension! I try to stay positive, but posts like this do not help.
And, carrot_juice, as Carolyn says, please join us on the Secondaries Private thread! And anyone else, of course.
Thank you for the feedback and so glad it was helpful, great you are feeling better.
Hi and just wanted to say a quick "thank you " Moijan for your post and putting things in perspective - I read the METSUP UK post late last night (big mistake) and felt quite down today, I'm normally very positive, nothing could shake my gloom and I was snappy. I must have missed your post lady night but I've seen it tonight and it's helped me back onto a even keel again, so thank you.
Just to add in here... totally agree re catching secondaries earlier.
I've had what I now realise is bone pain for 7 years. I asked ages ago and they put it down to the surgery I had for reconstruction. I didn't think (foolish me) that years on that the pain shouldn't have still been there so never mentioned it again. Once you've said it once you don't like to bring it up again!
I wish I'd had follow ups where they were specific about what bone pain feels like and how to check and be vigilant, since it is the commonest place to start. Yes this all costs money - but cheaper than the rounds of chemo and other drugs we are all on now.
i do hope that primary ladies are made more aware than I was.
Carolyn and Redridinghood, I think ive had my secondaries for years, I was on Letrozole ap. Then told i could stop after anout 7 years...later scans showed it all over my liver and in my spine, now they say stay on Letrozole for ten years!
i wish i had asked for a scan before they signed me off.
I just want to add that I have had a look at METUP UK and I wasnt particularly impressed...cant see how it currently is fighting our corner either.
I personally believe that this BCC site is one of the very best ones going and we know that Bcc is highlighting our plight and fighting for us. Another site which is worth keeping an eye on is Inspire, because they too are highlighting the issues without ramming inaccurate Rhetoric and stats down the throats of vulnerable people...and we are a vulnerable group of people.
with stats, you have to compare like with like to have any truly accurate meaning...met ladies come from all differen walks of life, some are poor financially others quite well off. Some were very ill by the time mets were diagnosed others caught quite early in their met stage. Some have had kids othersnot, etc etc.
Some have good immunity, others have major illnesses in addition to their cancer...add to that the fact that
there are loads of different kinds of breast cancers out there and it becomes impossible to make any true predictions that cover averyone.
Take heart ladies, we have to trust the oncs and travel hopefully.......together
much love, Moijan💜💙💛💗💖💚❤️😎
Absolutely, Carolyn. Now that I understand this sec dx I realise that I must have had it in my bones for years. If I had understood at the primary stage I would have asked for annual scans after stopping tamoxifen at 5 years. At that time I thought that reaching 5 years meant it was all over. GP seemed so pleased as though that was it. But there were no leaflets then, or any explanations. No BCC. I assumed that my 3 yearly mammogram was my follow up. Silly. I wonder if today's ladies have annual scans offered? Otherwise the follow up plan is to wait until it may be too late, with pain, coughing, liver symptoms, etc. This is where sec is a cinderella, and ignored until it blows up. Hopefully a pressure group like Met Up UK could push for this.
I mentioned to my onc last time that i had noticed that tamoxifen is now going to be offered for 15 years, not 5 like I had. He said it is a good idea for those who will need it. (Like me as it turns out.) But at the moment we just have no way of knowing who they are. He is right that there needs to be a test to detect if cells have escaped, and give real follow up........15 year tamoxifen for ER+ve, scans, etc......to those who have cells outside the breast. Chemo could be better targeted too. I have read that such a blood test is being developed.
Ho hum. But certainly much more could be done for metastatic, including better follow up post primary. A lot of money and time is put into catching the primary. Poor old secondary. GP awareness needs to be improved too, but I won't go there!
I have just read the post about Met Up UK. I don't usually drop by this thread so have only just read it. I agree heartily with everbody's reaction so won't repeat anything, but I did notice one thing when reading the press release. It is a point that I have noticed elsewhere...........there is the statistic that only 15% of those dx sec will survive for 5 years or more, but to me that clashes with the other known and acknowledged fact.........that 'we don’t even have accurate data on how many people are living with secondary breast cancer in the UK'. If we don't know how many are living with metastatic disease then how can the 15% statistic be worked out? They are not compatible. But as usual I may not have understood. Basically there is a general lack of accurate statistics which is strangely odd. But I do agree that sec cancer has been the cinderella although that is slowly changing, mainly because of the intelligent ladies who are sitting in this boat and pushing for ongoing treatments.
Quite frankly, pleasant, I wish that post had been removed. The stats in it are still inaccurate and really there is absolutely no point in posting it on here, other than the link, so that others can go and read about it if they want to.
i have worked in public health and used data and quite honestly statistics dont always mean much at all,
unless they are fully backed up by valid studies. There are lots of studies going on and many results conflict with one another...we are all individuals and respond differently to treatment.
i spoke to my onc several months ago and he said that due to all the new drugs currently coming out...there is much more hope for ladies like us. Also there are people who read the posts on this website to try and get a little comfort and hope for themselves because they are quite ill. We can all provide our own negativity without having even more rammed down our throats, especially when its innacurate.
Currently my treatment seems to be going very well and im optimistic, but im really concerned for those of us who are struggling to feel positive and are vulnerable to retorick.
Have just read this thread but not sure if i read the edited version of Pleasants post or not. I am a bit of a 'sucker' and just took the post at face value..yes we do need to highight our plight, raise awareness, get better treatment etc but i also agree with everything everyone has said since. You are an amazing bunch of ladies (havent met any men yet..at least i dont think so) without whom i would have struggled to cope with my secondary diagnosis and all that comes with it...bless you all. x
I don't have secondaries, but did read the original post before editing ( caused some sharp intakes of breath) I knew how it would make the secondary ladies feel.... So left them to deal with it and speak for themselves ;0) I can see that you were enraged by the statistics and the rough deal you felt for the ladies, it is an interesting read and for those who are interested it is more sensitively put now. I hope most will appreciate your honesty and apology. X
Please accept my apologies. I can see how I've offended many of you by the way I worded my post. It wasn't meant to be patronising and yes, I should have put things a lot more sensitively in the first three paragraphs.
Following those, the other information is the Press Release from the new organisation, Met Up UK. Therein lies the positive, despite the upsetting figures. Our struggle is the same but I rarely feel positive about my SBC reality. I've got to know too many young women on-line who are now dead, despite looking well less than six months before.
I don't want to dampen your positivity. Today I've realised the figures I read yesterday in the Met Up UK press release also made me feel terribly down and that obviously came across in somewhat of a rant. I haven't been on these pages for a long while and obviously got the tone totally wrong.
I hope you'll be able to forgive my intro and focus on the new organisation, which despite the figures, is pushing for improvement.
Wow that was a harsh post to read! I don't have secondaries but pop in and out of the thread and it's lovely to see so many strong positive ladies supporting each other and have a good laugh along the way, you have to have hope and carry on believing you will be ok for a long while yet and it's so important for newbies coming along to be able to see that, posts like this are of no help however well intended, you can be angry and bitter about the hand you have been dealt or you can make the most of every day! I hope this hasn't unsettled your lovely little group too much Xx Jo
Pleasant 1, I find your post condescending. We all know the statistics and just like to hope for longer! I haven't seen a single post on here that makes me feel anyone has the wool pulled over their eyes! We are strong women supporting each other through scanxiety, setbacks, death, life and hope. We have all seen many women taken with this dreadful disease! We have seen many fighting through to have more time memories. I believe in telling my story of longevity with this illness so maybe, just maybe that newbie can find some hope in living past the average! I want them to be able to accept their diagnosis, and move forward with some HOPE! Living in constant fear is not living! Living with the hope of maybe, just maybe you will make some goals and memories is so much better than FEAR! IF we are able to LAUGH along the way so be it! IF we need to CRY that's OK too. IF we want to stick our heads in the sand and try the OSTRICH approach that's our choice! IF we want to be active in breast cancer awareness that's wonderful. IF we don't want to be active in breast cancer awareness that's fine and dandy! It is our choice how we handle ourselves. We are not NAIVE and don't treat us as such! 11 year survivor who has lost many friends to this! Now girls lets uhh 've some fun in the cafe!
Yes we do need more research and funding. We do need to make people aware.
However, facts and figures do not tell the whole story. My onc team tell me more medications are coming on to the market. They cannot predict my life expectancy. Three years after the double whammy , I work full time ,lead an active busy life and feel very well. I have lost many friends on this forum , but my living a full and happy life I honour their memories.
Hugs to all and stay positive , M xxxx
This is the first time I have posted on the forum having been diagnosed with mets in April this year, however I follow all of the secondary forums and usually feel uplifted/entertained/concerned for someone in particular who might be going through an especially hard time and therefore less alone with my diagnosis. However well intentioned, this post seems unnecessarily bleak and I am in complete agreement with Stillhere that we do not need to be patronised. You don't need to read too many of the posts in the secondaries section to see that contributors are intelligent, well informed about treatments and all too aware of the challenges we all face. Hope may sometimes be in short supply and your post has just squished a little bit more out of me....
All my very best wishes to everyone in the secondaries section and many thanks for lifting my spirits over the last few months. You are all often in my thoughts, especially those having a hard time at the mo.
I'm sure that your post is designed to galvanise some action but I'm sorry, I just feel angry at your insensitivity. Do you honestly think that the many ladies on this forum don't know what it means to live with secondary breast cancer? Do we need statistics when every day is a struggle to keep positive and enjoying life? Do you assume that we do not know the facts and that they must be pointed out in a patronising way?
I don't even think that your facts about there being no new treatment in the last 10 years is correct. There are many new types of treatment being trialled- kinase inhibitors, parp inhibitors, many types of immunotherapy, new drug combinations. These trials are still ongoing but I feel that real progress is being made, even in the last three years (my son is a cancer researcher) It is only through research that cancer will be beaten, maybe not in my lifetime but I firmly believe, in the next 30 years.
I hope that your post is viewed more positively by others.
Press Release from MET UP UK:
A new advocacy group is being set up to lobby for a better deal for people living with secondary breast cancer, a terminal disease that is responsible for around 12,000 deaths in the UK every year.
Headlines about the increase in breast cancer survival are common these days, thanks to earlier diagnosis and better treatments. Women know and recognise the need to get breast changes checked quickly and more and more women are living for longer after being treated for primary breast cancer.
But while primary or early-stage breast cancer is curable, secondary breast cancer is not. Secondary breast cancer occurs when the breast cancer cells spread from the first (primary) cancer in the breast through the lymphatic or blood system to other parts of the body(1). Those who survive their initial diagnosis of primary breast cancer live under the shadow of it returning. The risk of recurrence can be lifelong.
In the UK, only 15 out of 100 women (15%) are alive five years after they are diagnosed with secondary breast cancer(2). Median survival for secondary breast cancer in developed countries is an estimated two to three years(3).
While we acknowledge the successes in the area of primary breast cancer, the time has come to take things forward. Education and awareness need to expand and focus on secondary breast cancer. UK charities are doing a good job in trying to raise awareness but more needs to be done. We want to push faster and harder for change.
Time is precious. Every minute of every hour counts. We need more research and better treatments. We don’t even have accurate data on how many people are living with secondary breast cancer in the UK. We do know that in the UK alone around 12,000 people a year die from this disease – 11,643 women and 73 men in 2012(4). One thousand families a month are affected and their lives will never be the same through losing a loved one. Some 1,430 worldwide die every single day.
This is shocking. It needs to STOP. Help us work towards this goal.
The Inspiration for MET UP UK
American breast cancer activists frustrated at the lack of progress on secondary breast cancer created MET UP in the US in April 2015. MET UP (www.metup.org) are active on social media and made connections with UK-based breast cancer advocates. As a result of this relationship and with the support of MET UP, UK breast cancer advocate Jo Taylor decided to create MET UP UK. Jo, a 47-year old mother of two, lobbies for progress on secondary breast cancer and lives with the disease herself. Read more about Jo’s work on www.abcdiagnosis.co.uk, including her lobbying of parliament.
Secondary breast cancer can also be called metastatic (hence MET UP), advanced, late-stage or Stage IV.
MET UP UK’s objectives are to:
Follow us on FB https://www.facebook.com/METUPUK/
Welcome Lynne and Karen
Sorry you have had to join us but you will find lots of friends on here you will find most of us on the bone thread where alot of ladies like yourselves are in the same position. Also a lot of joyful banter to take your mind off the serious bits but lots of good advice see you there
Love and ((((hugs)))) xxx
Hi Lynne and Karen - lovely to hear from new people and WELCOME :-))))
good of luck with the chemo tomorrow Lynne, calm mind and lots of distractions is what I find best. I have a little list of stuff to take to chemo which I wrote in the back of my chemo book so I check I've got it every time..
mine is ....
any questions for the nurses (eg meds needed)
ipad and phone (plus downloaded programmes if you can on either so you can watch something on bbc I player without being online)
notepad and pen in case I have a moment of inspiration (rare) or remember something for the shopping list (more likely!)
hat and scarf (as I have cold cap and hair is wet when I leave
happy positive outlook
....that's about it
Karen.... I am also 47 - kids are 12 and 14 and it's tough. I've been thinking a lot about how hard it is for them and it's nothing but heartbreaking. I have my own strategies but would like to talk to others with kids and how they manage info and tears so I might start a thread up about that. I've got bone and lung mets. Dx Jan this year with the secondaries
Best wishes to you both and look fwd to chats
Hi Karen, lovely to hear from you. Glad you have a great family around you.
i have had bone mets for about three years to my knowledge, and am having Zometa for that.
good luck with everything. Keep posting, we love to hear from you,
Hi Karen, sorry you find yourself here but welcome, I too was told I had bone mets (amongst others) and it was a joy to read your message. Please keep posting and let us know how you're doing.xx
I would like to say hallo and join in. I had primary BC 7 years ago and knew lots of women who were still well years after treatment so thought I was one of them. But last summer, a few months after my breast surgeon said 'You're cured!' bone irregularities were picked up during an investigation for something else. I have bone mets in my pelvis and something which may be SBC or may be menigioma in my skull and a tumour near my brain stem. I'm on exemestane which causes joint pain, fatigue, dizziness and insomnia. Sometimes I feel fine, other times not so good. I'm having an MRI scan on my head on Thursday to see if the tumour has grown and another bone scan next month. Today was a good day so I went swimming in the sea for the first time this year. I don't feel cheated because I will be 70 quite soon so every day will be a bonus but I do worry about what the days will bring.
I am in a very similar situation to you, in that I was diagnosed with primary bc at end of March, and secondary in bones about 6 weeks later. All terribly frightening, overwhelming and unbelievable. I found this website and forum a couple of weeks ago and felt, immediately, that it was going to be a lifeline for me. There is so much good advice and support, from ladies who are going through the same thing - it feels a very lonely place being dx with secondaries, but somehow the many postings on here give you hope and strength to get through it.
I would say, tho, that I am now 6 weeks on from secondary dx, and am feeling much calmer than I did during the first 2 or 3 weeks. I try to 'live in the moment' and not think too far ahead - although easier said than done a lot of the time. If you get a chance read up a little on the practise of Mindfulness - it's been helping me.
Take care of yourself, be kind to yourself and good luck with everything.