In answer to your question I basically had an ultrasound after three months and the lesions had grown and I had two tiny dots as well. Talk about panic! however, I found out later that there was only ever a 50/50 chance of it working! My onc didnt tell me this so i was devastated when they had grown. It does work for others though just not me! the cape has shrunk them considerably after 3 cycles however im still terrified for next scan. they seem to have a protocol. Tamoxifen, zolaex and letrazole then cape. obviously this depends on wether you are her+ or her-. I have asked about the radio frequency ablation . I get the impression that its not used much either. Also, cyberknife this seems to be used for liver but I got the impression they like to try and shrink them as much as possible first. Its a real minefield and such a bumpy journey. You read all these things on the internet but some of them don't apply to you. Its hard not to read it though.
you sound like you have had quite a journey yourself having had cancer 14 years ago?
Hoping everyone is well!
Bless you (if I may) Katherine, I felt no pressure and you don't need to apologise! ((hug))
What I intended to add - but forgot, grrr chemo brain - is that you yourself are already encouraging others.... I think there's a "give and receive" aspect to this Forum, we do what we can when we can.
Hi Katherine, thanks so much for your kind words
I think I know what you mean by "we're all depending on you" - but really, we're all in this together, not what we would have chosen but we can support each other. I'm glad to post on here while I can, but a time will come when I might choose not to do so, I do have a life outside bc and I'm so thankful for unexpectedly long "extra time" to enjoy it. I'm probably older than you (I have my bus pass!) but there are more treatments being developed for all types of bc. Meanwhile, it's helpful to live one day at a time (and I need to take my own advice sometimes!)
I would really like to see BCC focusing more on secondary/metastatic bc, we have a long way to go before the general public understands this. But for now, let's continue to support and encourage one another on here - to offer a listening ear when things aren't going well, and share our better news when we have some. x
Thank you so much Katherine for your reassurance. I am now well into my treatment and just taking each day as it comes, I have weekly chemo Tax and Avastin every two weeks, Have had 4 sessions so far and another 5 to go before scans. I am really down today and not looking forward to this week's chemo. But I know I need to do this for my kids, I find support from all the ladies here priceless. Wishing you all well.
Many thanks for your kind words. I certainly am beginning to see that this isn't the end of the world!! I guess once I get a treatment plan, things should fall into place. Its great to have a site where one can moan and groan and not be judged for it. I certainly have picked up a lot of information and experiences that is comforting. I am sure I will get through this and wish everyone else all the best.
Hello Kavir and others who've recently had the unwelcome (or choose your ****-word) news of liver mets. There IS life after such a diagnosis - my liver mets dx was in 2009 and I'm still on the roller coaster, thanks to various chemos and hormonal therapies (but no thanks to Taxol which didn't work for me ) I'm also a Marsden lady, it's great having a mets-clinic and CNS ( = clinical nurse specialist, otherwise known as BCN) so welcome to those awaiting referral and/or treatment plan. Clinic can be busy though! - bring your knitting or MP3 player while waiting
Kavir, so sorry you are joining us but like Helen says this is a great place for support. It is devastating but believe it or not you do find a new 'normal' once things begin to sink in. There are lots of options for treatment these days and lots of people on here have been going for a long time. I don't know if it helps but my bcn suggested viewing this as a chronic condition - needing more treatment at some times than others. Xxx
I just received the devasting news that my BC is 4th stage with liver mets. I am totally lost and just don't know how to react. My treatment will be at royal marsden possibly 8 chemos, surgery then radiotherapy. I found this thread and feel a little comforted that I am not alone but the thought of how long to have is at the back of my mind. I have a 14yr old and a 9 yr old and really do want to be around to see them grow up.
I see my oncologist on Monday to finalise treatment details which is frightening in itself. Thank you for putting this thread up.
Charlotte do you mind me asking what treatment you are having? I was diagnosed as secondary before my primary treatment started so my planned chemo was modified from FEC- T to just EC but at slightly higher doses. The idea being to keep the other two back for next time. xxx
Hi Louise, sorry about your diagnosis. I got my DX of a liver secondary in May. Have already replied on the thread Belinda bumped up for us but didn't mention on there that I am also triple negative. I was feeling pretty bleak when I started this thread but I'm feeling much more positive now.
I too was referred to the Marsden and saw Prof name deleted by moderator who seems to be the 'guru' where triple negative is concerned. He was very positive and seemed to think there were plenty of treatment options available to me. I hope you get a positive meeting too. Good luck xxx
Thank you so much for your reply it has made me feel more positive about my prospects. I only had left mastectomy 2 weeks ago before we found out about my liver - scans were inconclusive so they wheeled me off for a biopsy the day after surgery! Had primary dx a month ago.
My onc did say there were still lots of options so let's hope I can be one of these ten-year ladies too! X
I'm quite new to all this and hoping for some advice from others with liver Mets. Saw onc yesterday and she confirmed I have secondary BC. I'm also triple -ve.
Until yesterday I was still expecting to have the chemo she had talked about before (FECT) but now she is thinking about giving me something easier to handle which will give me a better quality of life during treatment. I can't remember the name of the drug she suggested I forgot to write it down.
I am 32 with a 2 year old son and I am devastated. I just want as much time with him and my husband as possible. Would anyone mind letting me know if they've had to make a similar choice? My gut instinct is to hit it as hard as possible but I am also aware that my son has already been upset by my need to recover from my mastectomy and keeps asking if I'm ok.
Any info or advice would be welcome as I feel completely lost.