Hello, i hope its okay to join this thread. I was told on 6th jan last week that I have secondary triple negative breast cancer. feel serile ......not sure its sunk in yet. I was first diagnosed in december 13 and joined a group on here called december angels which is still a great group and all the other ladies are doing fabulous - except me, I did a full years treatment - fec-t chemo, mastectomy and radio. finished in dec 14 then it came back in the skin in feb 15. did gem/carbo chemo, a massive op to remove 15 by 13 tumour in skin and got rid of other breast and armpit nodes to - a 10 hour op and finished 5 weeks of radio on 29th dec. now its back - bit on skin about scar across shoulder, in right armpit, chest node and two spots on my right lung. gosh - what does this mean as they said I am incurable? they said I can have treatment "if I want to" and offered carboplatin for 6 to 8 cycles. I am keen to do treatment again as I want to stay alive I have small children. any thoughts does this mean I have months or a year or longer? how are you all coping and how long have you had secondary breast cancer . thankyou if you have read all this!!!! xxxxxx
Welcome, although I'm sorry you're having to join us. Hopefully your team will get back to you with a treatment plan soon as things always feel a bit better once there is a plan in place.
I'm sorry its taken such a long time to get back to you. This forum is a really useful, friendly place where you can ask anything. It is great sometimes to talk to other people who 'get it'.
Only advice I can offer right now is to ask if it is safe to biopsy any Mets as your receptor status can change sometimes. Something I wouldn't have known if it wasn't for this forum.
Sending you love and hugs,
Thank you. My wait has turned into months from first visit to gp. Hopefully just one more week to wait.
Welcome to the forum. You will find loads of support here, whether you have questions or just want a rant. It can seem like an awfully long wait to start treatment sometimes but I think a few weeks here and there doesn't make much of a difference. I remember feeling like that early on and then reasoning that I would feel more panicked if they'd rushed me in the next day. Saying that it does feel easier to cope with one treatment is underway so I hope you do get started soon.
Lots of love,
Just wanted to say hello. Feeling rather anxious with how long it is taking for me to start treatment for the mets. Medical people are rather relaxed about it all but as every week goes by the worse I feel.
Hi. I have just registered to this forum. I was diagnosed with weakly positive BC in August last year. Had lumpectomy and four lymph nodes removed. Results came back good...clear margins around lump and no spread to lymph nodes. Had 23 sessions of radiotherapy. Discovered another lump in December which turned out to be cancer again. Had ct scan which confirmed it had spread to my lungs. Devastated. This time I was diagnosed as tnbc. I too have had ec and taxol and avastin with no success and am currently on gem carboplatin - second cycle. Fatigue is awful. Looking into alternative treatments now too. Sorry can't be more helpful.
Just got results of CT scan to Thorax, Abdomen and Pelvis re secondaries to Spine and liver plus lymph nodes. Results are stable appearances with decrease in some secondaries!!!! Onc is very pleased that the treatment Capecitabine is working wahoo. I have been on the treatment since Sept 2014 and just started my 13th session. Off to Mallorca in 2 weeks feeling a very happy bunny :lol:
I wish everyone the same good fortune. fingersCrossed.gif fingersCrossed.gif
Hi Kavir and Tillymint,
Being TN can be a bit lonely can't it. This thread goes a bit quiet sometimes but its good to know its here. Kavir EC didn't work for me either but so far tacol and avastin are ok although I'm rather nervously on a break right now.
Tillymint I haven't had the same problems myself but I think there is another lady on here who had heart issues with one of her chemos so it might be worth starting a new thread on it that she might see. I'll message again if I work out who it was!
Hello ladies, its great to find this thread finally. I have felt very alone being TN but having read through this thread have felt very positive. I was diagnosed with TNBC last august with both primary and secondaries in liver and bones. Have been on taxol and avastin then EC both did not work and am now on carboplatin. hoping next scans will show some improvement - could really do with some good news. Is there anyone out there with a similar situation?
Arghhh! Wrote a whole reply just now and the tablet ate it!
On a chemo break right now after my port got infected and had to come out - only two months after it went in which is gutting. Bit nervous about stopping the chemo which had been working well but it is nice to have some relief from the side effects which were really getting me down.
So tired of having to explain TN and SBC. Had a pretty horrible phone call with occupational health last week where I had to spell things out pretty crudely because they just weren't getting it. Perhaps we should get some cards made!!
Hope everyone is doing well,
Saw Onc end of Jan for CT scan results, everything was stable and I saw him again on friday for MRI brain scan results. The tumour I had zapped last march was barely visible and the one in November could not be seen. He was very pleased with the "good disease control" and no further lesions YEAH :lol: So I continue taking Capecitabine and hope it continues to do its stuff for a long time
Good luck to eveyone who will be getting results this week , luv n hugs Sue fingersCrossed.gif fingersCrossed.gif
Ps I went to my 1st LWSBC meet up in Sheffiield on thursday and t was very enlightening and I met some
lovely inspiring ladies. x
Hi lovely ladies, I have just been for results of a CT scan and after 6 lots of Capecitabine the cancer is stable....yeah Hope you are all doing ok and Lulu am thinking about you for 27th, good luck!!!!!!!!
Love and hugs Sue xxx
Good luck for the 27th, I'll be thinking of you.
Might sound a bit daft, but no idea what type of rads I'm having, guess just the basic? Appointments in half an hour.
Seeing my onc on Thursday so will ask him what he's heard about this gene discovery.