Thank you for your interest in the secondary private group. It has been brought to our attention that there are some concerns over the safety and accessibility of the group.
All questions are listened to and it is understandable that the safety of the group is of such concern for everyone. Please read all the information below, as we hope to alleviate all and any concerns, though please do continue to ask as the purpose of this space is for you all to feel safe and secure in order to provide a much needed space to be as honest and open with each other as you wish without the fear of others being able to intrude or read what you are all sharing.
Before accepting members to the secondary private group we read and check the content of their previous posts and see if they have previously posted on secondary boards. If they talk about their diagnoses then we accept their request to join the group, If we are unsure about a user’s diagnosis we then email them asking if they can give us some more information about their diagnoses and explain that this is a closed and private group just for those who are living with secondary breast cancer.
We are very careful with whom we accept into the group and do perform checks but what we are unable to prevent is someone giving us or you false information. However, we feel confident that the group will provide a supportive, private community area for people with secondary breast cancer where they can feel safe and supported by others who have shared or similar experiences, which is in an area which cannot be viewed by anyone on the open forum.
Also, we have happily now fixed the glitch which prevented users from viewing the members list of the group. You can now see the members of the group if you click the view all button at the bottom of the members bar on the right hand side.
Hi l was diagnosed with secondary bc in December. I was first diagnosed with bc in 2007 and have had lumpectomy macectomy 2 rounds of radiotherapy and FEC and Doxetaxil. Apologies for spelling. I am now on Capecitoben. Just returning from Breast Cancer Cares Secondary info day in Glasgow. It was great lots of useful info and wonderful to meet other ladies going through this in person. I’m hopeful that I can get back down for another meet up soon.
Just returning read my first post on the secondary thread back in December. I feel in a much better place mentally than I was then. I was helped by your kind comments and also support l have received from (removed due to Ts and Cs) the physiologist at Maggie’s centre Inverness. is something my Macmillian nurse suggested to me when l confessed to how low l felt. The phycological impact of this diagnosis was an item brought up at the info day l attended yesterday at BCC Glasgow. I would be interested to know other folks experiences of support that have recieved for this and if they had to seek it out themselves or if it was offered at the time of diagnosis?
Thank you for asking to request to join the Secondary Private group. I have put some steps below on how to request to join. I hope this helps :)
First, click on the Secondary Private Group. I have included a screenshot below.
Then click the ‘Ask to Join’ button in the top right hand corner of the screen. The moderators will then receive your request and confirm your diagnosis.
its been suggested to me that I try and repost some of my posts from the bone mets forum on here so they are more accessible and don’t get lost in the ether.
Hi, have been wondering when I would hear if I have been accepted, for this group?
do we usually get a reply saying yay or nay? To be honest, I cant recall when I emailled to request…the days seem to run into oneanother just now. Moijanx
Hi ive not long been diagnosed with secondary Tnbc lungs , spine , liver and brain . I’m devasted to say the least. Started gem/ carb last week not tolerated very well . Had second one today … I’ve not posted in secondaries but I’ve been reading through
Would like to join group please xxxxxx
Hi, I would like to join this group please. I was recently diagnosed with BC with secondaries on my lung and awaiting a bone scan. On Tamoxifen and due to see chemo man in three weeks (feel like I have been waiting forever for one test result after another). Really struggling to cope at the moment and hoping talking to ladies in same situation will give me idea’s on how to cope. I’m a 47 year old mum of 1 daughter, 18 and very happily married. (I can’t see button to join group).
Hi Lizzy thanks for letting me join the secondary private group
Never thought I would be here after being six years Bc free
I had my second Kadcyla this week after six months
of chemo not working at all
Feel as if it it taking me so long to pick up still in pj’s since Tuesday would love to know how others are coping or any tips
Have tumour on my left lung and in my sternum
Best wishes and hugs to all in group x
Hi lizzy. Can you take me off this thread as im getting too many emails. Its the games ect. I dont do things like that and im getting loads.
I will keep with the other two threads i follow.
Thanks maldives xx
