Hi Pleasant,
Thanks for being decent enough to reply to us. I am happy to accept your apology. I think you will agree you won’t ever get a job in PR. However, I can understand why you got angry when you read the report and had a rant but I’m afraid your post was a very cack-handed way of trying to draw our attention to a very important new campaign. However, due to the negativity of the message I suspect a lot of us had stopped reading by the time we got to these details abd the message was lost. I would suggest you start a new thread giving details of MET UP UK and their campaign in a way more appropriate to the forum.
One of the things we like to stress on our forum is that statistics don’t give the whole picture and none of us is average. In fact the lack of data on people with SBC means that any figures quoted are guesstimates anyway.
We’re not burying our head in the sand and we never underestimate the enemy we are facing. We are just trying to get by from day to day. We share each others relief when we get good results and support each other through the not so good news. We also try to have a little bit of fun along the way. You are nore than welcome to join in. Best wishes xxx
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
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.
How can they get stats on secondaries as in my case I was dx last October but my bone Mets were so advanced they guessed had been there for as long as three years until i started getting pain. A lot of ladies are similar.
Most of us get discharged five years from primary and unless we get pain or a symptom …secondaries can be forming for ages before we get scans and investigated.
Maybe we should be campaigning for annual scans indefinitely even after our five year window.
Carolyn xxx
Hi Mo,
That’s exactly what I thought too about the 15% figure. Although I do agree that it is a important campaign as drug companies and governments need to take notice of our plight. xxx
Thanks for the input red riding hood …now I think I’m right but now the primary ladies get a special test that’s sent to US at a cost of £2000 which tests the tumour and rates it as low, medium or high risk of reaccurance and chemo prescribed as necessary and also the hormone therapy ( tamox or letrozole) is then given for the appropriate years …up to 15 years etc depending on the rating and risk. I also think they scan and scan and double scan primary ladies before operating and maybe missing a secondary at the onset.
Mine in 2004 …was mammogram lumpectomy chemo rads and five years tamox and then bye bye and off you go !!
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???
?
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.
Hi Julia,
Thank you for the feedback and so glad it was helpful, great you are feeling better.
Moijan
xx
Hi yes I had MX chemo.rads tamoxifen for five years.then just once a year at clinic where they checked breast under arms and neck…
Pretty lame really.then discharged assumed all ok.but probably had Mets even then…more needs to be done in that section
No.one ever told me sec symptoms and I just didn’t google anything as assumed I was ok.xxsharon.?
Hiya Sharon
Yes looking back we were so naive about reaccurence weren’t we? I put mine down to old age for a long time !!
I wasent given any info and danger signs to look out for but it was 2004 and things I think are better now.
Hugs xxx
Hello. Not sure if best place to post! I have recently been diagnosed with sbc which I think may be an unusual presentation? I have a tissue mass in the anterior mediastinum and chest wall, as well as some nodes and pericardial and pleural effusion. Organs bones etc appear clear. I am TN (or I was at primary but they don’t think this will have changed) so treatment for now is chemo and I’ve started 18 taxol last week. I wondered if there was anyone with a similar presentation x
Hello carabel
Welcome to our family and sorry for the dx …it’s a big shock to receive and your mind will be all all over the place at the moment.
I’m hoping there will b some ladies reading this that will be able to give you some support. I have bone Mets.
We have a thread " bone mets" which is the busiest place and maybe if you post there …you might get some support.
But whatever …you will find kindness here from so many ladies.
Xxcarolyn
Actually carabel …
There is a thread for triple negs here which you might find useful too.
Carolyn xx
Hello carabel
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)))
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
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