Breast Cancer Now Forum

Dear Halliwellfrance   a few months ago I went for an opticians appt and they noticed ‘lesions’ on one of my eyes. They said they were like marks or just different patches on the chronical part.  I was referred urgently to Hospital suspicious of eye mets (have bone and lung mets already, dx 2yrs ago) and had lots of tests, usual,stuff like when you go,to,optician plus ultrasound on eyes (this is not too bad but a bit wierd,they put gel on a camera thing and touch your eyeball with it. It’s fine just odd).    They also put drops in to make your pupils dilate and hence don’t drive on your own as hard to see because of the brightness for 2-4 hours.    My lesions turned out out to be flat, ie not raised and this was a good sign. They say it could be mets but may just be something I was born with. They can’t biopsy so they see me now every 2-3 months to check the lesions aren’t getting bigger/thicker. So far so good. Eye mets are not too bad to treat - radiotherapy can keep,them under control but I am on chemo (Cape) so it could be mets that are being controlled. Just crossing my fingers things don’t change.    There are also,lots of other things they could be - scarring - not sure how that would happen but... and other less horrid things which I can’t remember the name of.   Are you on chemo currently? A very frightening time but try hard to not worry till the appt - don’t let it ruin xmas.. it could and hopefully will be nothing. easier said than done I know but no point wasting time worrying - I always say to myself - save the worry till you KNOW there is something to worry about.    Sending big hugs and crossed fingers and a happy Christmas for you and your family    Helen xxx ... View more

Hi Jo, I agree with all that Nicky has said. I think until,you try a chemo you don't know which of the side effects will affect you and to what extent so some are worse for some and not for others. You mum can try a chemo and come off it again if she finds it intolerable. Quality of Life is vital and chemo can be unpleasant but many of us with secondaries have it constantly with some breaks - the best thing would be to discuss these concerns with her oncologist as they are generally trying to help us balance a decent quality of life with stabilising the disease.    Big cyber squeezes to you and your mum  helen xx ... View more

By the way it is under living with secondary breast cancer  (rather than treatments and medical issues) Hope that makes sense! https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/td-p/477048 ... View more

Hi! This BCC forum has lots of lively threads, in particular the 'bones mets - please join in' thread where lots hang out even if not bone metsers. Or did you mean are we on a different forum altogether?    helen xx     ... View more

Hi Tracy, you must be in shock, what a rollercoaster few months. I also have lung mets and bone mets too. I was dx for secondaries Jan16 (primary in 07) and was terrible last year with breathing etc but have improved now significantly - first 2 chemos didn't suit and third is working (finger crossed !). I also have kids, 12 and 15.    Once you are clear on what treatment you will be on, life will become much more bearable. This is the hardest stage but you will get through this and life will be different but in time it becomes normal and children are amazingly resilient. Many lung metzers survive for many many years (ignore any stats you see, they are apparently very out of date) and there are so many new drugs being tested it has to give us all hope.    Whilst being devasted like you, I had a brilliant year last year because I threw everything into living with cancer and not dying of it.  I travelled loads, did tons of wonderful things with my kids and got married. I feel much better and am feel in control of what happens to me and over the next few months you will build up knowledge and feel the same, I hope.   Sending love and hugs at a frightening time. Keep visiting the forum - its wealth of information and kindness is priceless helenxxxx ... View more

Hi - I am on Cape too (cycle 5, same dose as you) and also get very fatigued. I am amazed at how little I get done as seem to need to spend so many hours resting. Frustrating! I think accepting this is how it is, is how I manage. I have lowered my expectations of what I'm gonna achieve each day. Helen xxx ... View more

Hi Di,  You are in the worst bit right now and over time you will learn how to cope. It's natural to feel exactly like you are.. you are probably in shock and your mind is doing cartwheels and going through all the the terrible scenarios it can muster up. Once you start treatment and get into a routine and know how the side effects affect you, things will be better. I was dx with bone and lung mets a year ago, decided to get married and the onc told me to do it quickly... he didn't expect me to see the year out. I had a party last week to celebrate one year of living with sbc. It felt like a big achievement and I am so so much better than I was. I'm over the shock and feel more in control and you will too.   My my kids are 12 and 15 and living with it has become the new 'normal' for all of us - life is different but you will cram in much positive happy times I'm sure. Be kind to yourself at this time, it's tough but it will get better. xxx ... View more

Hi Louis Its so tough this disease. when I'm down I try keeping a note pad and at bedtime making myself try and think of 3 things I enjoyed that day.. watching some crap tv show or eating something yummy or going for a walk.     They say exercise is one of the best helps for depression and just getting some daylight for a 15 minute walk everyday would probably help. Ask mum or dad to tell you it's time to go for a walk if possible - I really need my husband to drag me out sometimes and I don't want to and can't motivate myself but in the end I feel better for it. The idea of focusing on a few good things you've done each day can be helpful.  Also trying to think if there is anyway you can help anyone else.  I know that sounds odd when we need so much support ourselves but giving is such a positive experience that can help you feel like you are contiubuting to something or someone else. I sometimes write cards or letters to friends to say thanks for being there or for something nice they have done. It really opens up relationships in a positive way to receive a note from someone. I know you are seeing a therapist and this is all probably not much help and I do really feel for you.  i wish we had a magic button inside we could press to take those negative sad thoughts away. xxx ... View more