Thanks for that Jennie, I’ll look for that now. I’m down to 200mg due to low white blood count, just praying it finally settles down now!
Hi Angel eyes
Theres no need to apologise about feeling the way you do, it’s only natural when you are thrust into the world of secondaries, everything seems like doom and gloom particularly if you search on Mr Google!
I was diagnosed with mets in 2008 and although I have gone through lots of different treatments since then life has been pretty good, if anything it’s the treatments that have caused the most problems! I have managed to continue going on holidays, work (when I chose to although I gave up a few years ago) see family grow up and generally live as I would have done pre diagnosis but with a shortened expectation (which is the difficult part as we all know). I am hormone positive, HER2 negative so have used chemo and hormone treatments alternating between the two over the years. I also was had a very favourable prognosis from primary BC, no nodes involved, caught early etc so it was a huge shock when it came back in my bones especially when I had no symptoms. Treatments at times have kept me stable for years and although I had spread to my liver 6 years ago the lesions have responded to treatment and at one point a couple of years ago I was NED in the liver after having surgery to remove 3 lesions, so in fact my liver was in a better state than when I was diagnosed with liver mets!
It takes time to adjust to this new way of life so don’t expect to be accepting of it straight away and quite often when you get a good result from that first, post-diagnosis scan you can relax a bit. The current COVID situation with social distancing and difficulties with travel etc certainly don’t help any of us as it’s isolating enough with this diagnosis but hopefully a new normal will happen to us all. Treatment really are being developed all the time and even in the last couple of years I’ve seen ladies on new treatments that weren’t being offered at all at the beginning of my time with secondaries. Palliative is just a word for no cure, which we all know is not possible with SBC (certainly not in my lifetime anyway) but my view has always been that the treatments are barriers which stop the little uggers and if we keep putting up a barrier we can stop the progression or even reverse any progression that has happened.
Hi ladies I'm on kisquali and fulvestant. I joined the kisquali forum on face book and I'm inspired and hopeful by the progress some ladies have had. It's really worth a look x
Thank you for your reply. Glad you are adjusting and doing well.
I try to remain optimistic but it's hard. I know women who live for ten years with this seem to be a rarity? I've not asked my Oncologist for a prognosis as I don't want to know. I feel some days as if I'm under a death sentance that I can't get out of and it makes me really sad.
I don't know what happened. I wasn't considered high risk, having no lymph node involvement and I don't want to die so soon.
I don't understand the treatments (well, I do, obviously, intellectually but emotionally?) I don't see how hormone therapy can work if it's considered less than two per cent effective without constant back-up from chemo?
I know there are many different combinations of treatment and everyone's is varied but I do feel written-off - especially as I know if I need bone cement for my back I will need to go through palliative care and not my oncogist. So depressing 😒 the way we are packed off as dead but not quite.
I am well at the moment, thank God but dread the day I may not be.
I am not over-optimistic about my scan results. I imagine the Paxlitaxel is working in some areas but understand liver disease is very resistant and that any lesions take the longest to shrink.
I hope everything works.
Sorry if this message is depressing for some - but it's how I feel and also what I observe.
Hi Angel eyes so sorry to hear your cancer has spread . I have recently been diagnosed and the breast cancer has spread to my neck lungs and liver. I had primary breast cancer 3 years ago and only had 1 lymph node involved .Like you I had Radiotherapy and was on Tomoxifen. my world was turned upside down when I found out about the spread and the shock of being told that the cancer was now incurable. Its about 4wks now since my diagnosis and have now started my treatment(ribociclib and flurestrant injections} I am trying to come to terms with things however cant help being very upset However it has happened and theres nothing I can do about it so now Im trying to get some kind of normality back into my life so I dont dwell too much on my diagnosis. Think its been made harder by the lock down as normally when something traumatic happens you can get together with friends and family or people can pop in to see you however with the lockdown and having to Shield we haven't been able to do this which can mean your more isolated than you would have been. It is hard living with the uncertainty so like others have said I try to make the most of what Ive go now as their are no guarantees on how long we will live or how well out treatments will work. so to get by Im hoping I will live for at least another 10yrs and in the meantime make the most of things. No doubt about it though we all struggle with this diagnosis. Im hoping you have good outcomes from the treatments your having , there are people who live for a long time with secondary breast cancer and there are lots of different treatments out there and new ones are coming out all the time and Im sure they will find a cure one day. Take care xx
Thanks for your response.
Life is still difficult, some days. I won't lie. I'm better when I'm active. It's when I've got time on my hands that I fall down. Can't wait for virus to clear a little so I can join a psysical support group and meet women who are actually living nine/ten years!
In the meantime, this forum is a lifeline and certain YouTube blogs.
I have hormone positive and HER too. Apparently it’s about 15 per cent of us overall. I was diagnosed two years ago and so far, everything is stable. There was shrinkage in my tumours after chemo and with three weekly IVs and six weekly Denosumab I have been stable ever since. I had a CT scan on Monday and am due a heart scan on Friday, so it’s always an anxious time waiting for results, but I am definitely learning to live a more normal life. I do find it difficult though in relating to those with curable cancer!
Hi Angel Eyes,
How are you doing? I've just seen your PM and hadn't seen your reply on this thread until just now.
I'm glad to hear you are feeling well but of course sorry to hear you're also feeling down. I also have days very much like this.
I also feel like I never know what is going to happen next. That is one of the biggest things that you need to get used to - the living with the uncertainty. That's why "living in the now" is so useful to get the hang of, because you can find ways of being more at peace and still experience happy moments if you aren't worrying about what tomorrow will bring. It took me a long time to get my head around this.
The way I started to look at it all was that we're all going to have to die of something, one day. We don't have any control over any of that. As the old saying goes, someone could get hit by a bus tomorrow and wouldn't know it was going to happen. What's different for us is that we have to live with the knowledge every day that we have an incureable disease, whereas most people get to live in a bubble of blissful ignorance. I decided that I am going to make the most of things, instead of sleep-walking through life, I can now enjoy things so much more because every moment is precious to me. I can find things to keep myself occupied, relaxed and amused so that I'm not alone all the time and "stewing" over everything. When my time comes, I want to feel satisfied that I made the most of everything I could and have many happy memories to reflect on and think about.
Have you been able to talk to anyone or ask for some help or support? xx
Dear Angel Eyes
I'm sorry you are going through a rough time.
If at any point you feel like chatting to someone in our team, please remember we here and we are always eager to listen and chat things through at your pace. You can speak to our breast care nurses on freephone 0808 800 6000 (Mon-Fri 9am-4pm, Sat 9am-1pm). Our service is free, friendly, and non-judgmental, so please don't think twice about getting in touch.
I hope you continue to find support, love and encouragement from the wonderful community on this Forum.
Sending our warmest thoughts
Thank you for your response.
I am still very down although I feel quite well, thank goodness. I feel like I never know what is going to happen next or what I'm going to hear. It's on a wing and a prayer.
Can I ask why you are on injections? I've had to start with chemo. I have no idea what will happen next (if I'll be taken off low dose Paxlitaxel and put onto a stronger chemo) or go onto Ttastuzumab and Perjeta with Denosumab only. Can't see it somehow.
Take care of yourself,
Thank you for your reply.
Oh dear, hadn't ever come across the research you mention about breast cancer cells lying dormant only to come back many years later. I'm still scared and don't think I will ever really come to terms with what has happened to my body.
I am very glad you are responding to treatment and am very grateful for your advocacy. I value your knowledge enormously. Long may it continue.
Hi Angel Eyes,
Reaching out and sending you hugs. Its a horrible place to be when you're diagnosed with secondaries. Its natural to think the worst, feel fearful, anxious and upset.
The science on breast cancer seems to generally indicate that breast cancer cells can lie dormant for many, many years (up to 20 years in some cases) and research is being done to find out why this is. The thing is, you are most certainly not alone and many people do live for many years with the disease!
Its a lot to take in at the start and I also felt similar to you at first in that I couldn't talk about it as it might blunt other people's hope and positivity.
You can absolutely talk about how you feel, if you want to. How other people feel is not your responsibility and if you need to reach out and talk, you should. What you're experiencing is traumatic and its important that you feel supported and listened to as this all helps in the long run to deal with how you adjust to life after the diagnosis. I found many of the friends I made through my primary treatment and hospice support group continued to offer me the same care and support once I told them about the secondaries.
I've read stories of so many women who have lived with this disease for years. Or who were told their prognosis for long term wasn't good, only to find that a particular treatment worked well for them and kept the cancer stable or resulted in no evidence of active disease. Its so unpredictable! Take one treatment at a time - you never know how things will change after each treatment and there can be good news as well as bad on this particular journey. Also ask your breast care nurse or GP for mental and emotional support, see what they might be able to suggest for you. Don't try and handle this all on your own xxx
Hi thought I'd reply and tell you I was diagnosed with secondary breast cancer last October Halloween to be exact. And the scariest one yet!
After lots of scans and biopsies I was told it was in my liver, the lining of my lung and a spot in my tummy. Later I was told there was a hotspot in the bottom of my spine. All very scary and hard to accept initially. But now I've been on kisquali and fulvestant injections ever since. The last scan said all was stable and I'm tolerating the meds well. I asked if I could live with this and was told yes we can treat it for years. I'm not ready to know how many years. I take every day at a time. I feel quite well overall. Ofcourse I worry but I try to ignore negative thoughts and cry if I need/want to, it helps. People know I have it and know my thoughts on no pity please. For me that's better than trying to hide things and means my grown up daughters and husband can discuss me with friends if they need to.
This isn't easy. It's a horrible disease which I only wish didn't exist. I hope as time goes on you will feel better. A plan helps. Take good care and don't forget this forum it's a godsend xx💕
I am struggling to find anyone with what I have. Breast cancer to liver, lungs, bones, lymph nodes and a 6mm pelvic mass. I don't know what the pelvic mass is yet but have to assume cancer as well. I'm waiting for my CT scan on July 1st to let me know.
I am seven weeks into an eighteen week course of low dose Paxlitaxel and am HER-2, ER+ and PR+ so get Pertuzemab and Trastuzumab every three weeks and a six weekly injection of Denosumab.
Sometimes I get very down and don't see how I can survive. I was eight years clear from my original diagnosis and had no lymph node involvement then at all. I had a lumpectomy, radiation and Tamoxifen. as original treatment and I don't know what happened for the cancer to have come back in the last six months in so many places.
I just want some hope. Can anyone help me? I regularly see ladies here who have seven years with secondary disease and pray to be one of them. I find it so hard and feel part of a secret club where I can't talk for fear of upsetting those with only a small recurrence/spread or those newly diagnosed with curable breast cancer. I worry the chemo won't work and that I won't respond to hormone treatment and then will run out of options. I understand if chemo does not work for me I will be onto Kadcyla and won't be able to have any chemo again or revisit Herceptin and Perjeta. I'm so scared.
Thanks in advance for listening.