Hi everyone I am new to this site but am really struggling with diagnosis at the moment and wondered if anyone could help me climb out of this black hole, I am 47 and was first diagnosed 9 years ago. Christmas 2009 I ended up in hospital as collapsed on the street as femour about to fracture due to bone spread.Had pin fitted and radiotherapy and hormone treatment. Started to cope but last scan showed small spots on liver. I am receiving Faslodex and had a scan on Friday last to see if working.Have to wait till 18th May for results and I am a mess!!They are suggesting chemo if Faslodex not working and just don’t think I can cope with it second time around. Was really poorly first time!!so have decided to refuse.
Hi Lily
I am sorry that you are feeling so down about your diagnosis, but I definately think that you have come to the right place. Hopefully we will be able to help you. The secondaries forum is a very supportive place, we are always there for each other. My current positive state of mind is entirely due to advice and support from others on here.
I had to reply to you straightaway, as I completely identify with you and apart from timings, your diagnosis is very similar to mine. I am 45. I was diagnosed last April with secondaries, after experiencing pain in my hip. I had bone secondaries in my neck, shoulder and sacrum and extensive mets in my femur. + a tumour in my chest, thought to be an infected lymphnode. I was understandably devastated.
It was only coming on here and hearing positive stories of others living for many years with secondaries that changed my attitude from ‘I’m dying of cancer’ to ‘I’m living with cancer’ and getting my head round this has been paramount to my current positive thoughts that I am living with a chronic illness, that could be managed for many years.
I have tried Aromasin and Femara, both of which didn’t work and in December I was diagnosed with 2 spots on my liver. Again panic set in, and again I was reassured by stories of how resilient the liver can be and stories of people having liver spots reduced by hormones, chemo or surgery. I too was put on faslodex. In February I had results of a Ct scan which showed that the bone mets had stabilised but the liver ones hadn’t. I then asked for a double dose of faslodex, which was agreed. I am due a scan soon to see if this has actually ‘worked’. In the mean time my leg/hip got more painful and I was advised to have part of my femur removed, as they were worried it was in poor condition and about to fracture. I am currently recovering from a ‘proximal femur replacement’.
With regard to chemo, I too have at the back of my mind that this is likely! although I very much don’t want it! However often the chemos used for secondaries are different and there are many people on here, who will probably come along and give you advice that have had long term chemo, wthout hairloss and symptoms associated with the more agressive chemos. (I don’t doubt that there are other side effects though! but possibly ones you could cope with!)
Please don’t ‘struggle on’ in silence, phone the helpline on here and keep on posting, hopefully we can help you. I would recommend ‘live chat’ on a Tuesday, we have become a group who support each other and have become good friends in the process!
If you have any questions at all please respond here or (alternatively send me personal message and I can reply in private)
Take care
Nicola x
Hi Lily,
Nicola is the one I immediately thought of when I read your post this morning and while I was pondering on my reply, hers appeared!! The waiting for results isn’t great, is it? Whenever I have scans etc, I work on the basis that if they haven’t got me back in quickly then things are ok or not that bad that I need urgent treatment. May be a bit of head-in-the-sand approach but it works for me!
I was diagnosed in July 07 with primary and bone mets at the same time. Had chemo first, then mx and anc (lots of nodes involved and extra spread in tissue), rads and hormone treatment. The bone mets did reduce with the chemo a bit, although that was being used to shrink the tumours in the breast. For the last 2.5 yrs or so I’ve been on zometa for my bones and for the most part they have been stable. I had a bit of spinal spread late last year but had a one-off rads blast in January and that relieved the pressure on the nerves and muscles that were being ‘squashed’. I’m sure that at some point in the future I will need further neurological treatment and chemo but will deal with them when that happens. It’s just the way I deal with bc and mets.
I have otherwise been well, retired from work early (I’m 46 and they pensioned me off at 42!!)and have done all sorts of things since. There are places I’ve wanted to visit or go back to like Rome and Paris and I’ve done that and have spent time I otherwise wouldn’t have with my parents who are in their late 70s and my OH who is 20 yrs older than me, as well as going to stay with my sister in London more frequently.
Do join us on live chat on a Tues night - great girls to chat to and we always have some laughs as well as provide the support when things are a bit tougher.
Good luck and hang in there,
Liz
PS Am sure others will be along soon with their positive stories
Hi LilyK
Welcome to the forums. As well as the support you are receiving from the others users, as Liz mentions there is the secondary live chat on a Tuesday evening. This gives you are chance to talk to other women with a diganosis of secondary breast cancer on-line in real time. It runs from 8.30pm to 9.30pm and all you have to do is click on the live chat link in the left hand corner after you log in.
BCC also has a helpline which Nicki has quoted. Here you can share your concerns and feelings with one of out trained members of staff who will offer you a listening ear as well as information and emotional support. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.
I hope this helps.
Best wishes Sam, BCC Facilitator
Hi Lilly
You are in good company here. The waiting for results is awful and being between treatments. I have had two lots of chemo (2 x 6 months) in the last 18 months. It is doable, each one has never seemed as bad as the one before. I only ‘lost’ my hair completely with the first one. The second two have caused some thinning, but not that anyone else but me and my hairdresser would notice. Other side effects have varied but mainly tiredness and putting on weight, I am so vain that that is the side effect I hate most, especially when I can’t fasten trousers!
WE are caught between a rock and a hard place, the thought of treatment is frightening but so is the alternative outcome. I don’t want to trot out the old chiches to you but, I am grateful for all the ‘extra’ time the treatments are giving me to spend with my family and friends, whatever we do, I really appreciate my time much more.
Big hugs are sent from me to you. Stick in there if you can. Sue x
Hi Lily, I too had a collapse in a street around Christmas 2003. My hip spontaneously fractured and I received my bc and bone mets diagnosis together along with a hip replacement. This is a very supportive place…xx
Thank you all for your kind words which gave me much comfort. My last scan showed a very small increase in liver met size but not enough to change treatment yet as the Onc felt the Faslodex hadn’t had chance to work yet as was still"loading up".
I had another dose yesterday but today have pain in right ribs and a little gloating and am convinced that the liver mets are getting worse ! Has anyone else experienced this.? I am getting myself into a right panic.
Best wishes to you all
Sorry not done any gloating was meant to read bloating!!!