Hello everyone. I had breast cancer in 2010, thought it was conquered but it’s now returned. Unfortunately in the metatstatic form. Doctor says no cure only palliative care, so I am on tamoxifen, capecitabine and monthly ‘bone injections’.
My question is how long does this go on? The MacMillan nurse at the hospital said we’re talking months rather than years, which was rather sobering as I took him to mean length of life. Afterwards, I wondered did he mean you take the medication and then have a rest. Because I was told it’s not a cure, only palliative, I am wondering what the realistic time line will be. Anyone out there who has taken this drug for years?
I was sad to read your post. I have had secondary breast cancer in my bones since last March. I was diagnosed with primary and secondary all at the same time. The doctors told me that it’s not curable. They weren’t precise about time scales. I’m still at work full time and feel fine. Perhaps talk to the oncologists? It doesn’t sound great but be unsure about what was said. I wish you well x
I have absolutely no idea what that nurse meant. If yiu look on these forums and ones in the USA yiu will find that many ladies are living years and years with bone mets and even with mets to liver and lungs. I’ve had bone mets for 4 years now and am still on hormonal treatments. Please don’t look at statistics everybody is individual and there is a lot of treatment out there and new ones on the horizon.
Hi you need to speak to your oncologist to get a clear answer and put your mind at rest.But they have no way of knowing how the medications will work on you so any prognosis is just an average from probably outdated data.
I was diagnosed with secondary cancer in my liver with multiple tumours in 2016 3 years after my primary which I was meant to have a good prognosis from.I had chemotherapy (didn’t need it 1st time round) and on letrozole.In 2017 was told I have 1 small bone lesion too so have monthly Denosumab injections too.Despite this very upsetting and worrying diagnosis and being told by the oncologist my prognosis was 2 to 3 years I am still well and working full time.My GP told me it was ridiculous to tell me a prognosis at my 1 st oncology meeting as how could they know how my body and tumours would react to the treatments which made real sense to me.He should know as his wife has had secondary breast cancer for many many years and she is still here.
Although it is devastating to be given this news with the words palliative care being offered which fill your head with awful thoughts,I have learnt to just get on with life and live with it in the back of my mind not at the front which for many months I did.Because I was feeling well going into all this and pretty healthy I think that has helped a lot.
Do you live near a Haven cancer centre which offer free help and support?Or any other support networks like that as they can help a lot.I had reflexology at my local hospice when having chemotherapy which helped me.
I wish you well and you will find the strength to cope with this as we are all stronger than we know we can be when faced with this terrible disease.best wishes Didi
I very much agree with what has already been said, I’m well into my fourth year now following my diagnosis straight to stage 4 with spinal mets, am also still on hormonal treatments and feeling very well.
Didi62 mentioned the Haven centres, another fantastic charity is the Penny Brohn Centre, based in Bristol, where you can attend courses but they also do outreach sessions and have a helpline. It’s an amazing place and the residential courses I’ve attended were excellent.
Hi I had Breast cancer in 2007 and now spread to bone in 2017. I’m on Femara and I took monthly injections for the bones for a year and now it’s every 2 months and I’m on a clinical trial of ribociclib. There is no cure ( that’s what my Dr says) but it’s treatment for life.
Once this medication stops working then they switch to another… TIL all medication doesn’t work anymore. How long will that be is different in different people. There are some here in this forum going on 15 years.
So we just go and and hope for the best. Perhaps soon there maybe a even better medication that can cure this disease. Just try to be positive and keep busy, spend time with loved ones.
Take care and God bless
Victoria, I do not have bone mets. I have lung mets and lymph nodes in chest. What normally happens with most treatments is you take it til the cancer grows and that means the drug is no longer helping you. You will then move to another drug. My primary BC was in 1995. The metastatic to the lungs was found in 2005. I have been living with metastatic for 13 years. It has been 13 years of back to back treatments. It sounds like your cancer might be slow growing since it took 9 years to rear it’s ugly self. Mine took 10. There are many treatment plans in the doctors bag. What works best for someone else might not work best for you. Also, side effects are different for each of us. I am 64 and still work PT. Also to let you know I live in the states. I’m in Pennsylvania about an hour west of Philidelphia. Good luck. FF
Hi Victoria, I was diagnosed with BC two years ago, and having gone through all the treatments ((surgery, chemo, rads) four mets were discovered in my lungs. I attend a super support group at my local Maggies centre. There is a lovely group of secondary BC girls with differing symptoms. Our motto is that we are living with, not dying from, cancer. There are lots of different treatments out there for us girls, and the survival rate is excellent. Stay strong, and take heart from everyone here on the secondary group. You are not alone. X
Hi Victoria Sponge - I was also diagnosed in 2010, aged 36yo, mastectomy and good prognosis with no lymph nodes involvement. Just found bone mets - spine, ribs, pelvis, and possible lung mets. I have friends who have lived with mets like this for many years, working and living full, productive, joyful lives. Who knows what cure may be discovered in upcoming months or years? Starting chemo next week, and dreading the nausea, but glad to be doing something about it. Sending you lots of strength and peace xx
I agree with what others have written here to avoid focusing on statistics because we are all individuals and until a person has started taking the treatment it’s not possible to ascertain life expectancy. Time will tell…frustrating as that may be. We are all different…one person’s body might respond really well whilst someone else’s body may not and they will be moved onto a different treatment.
I was diagnosed at the end of Oct 2019 with metastatic breast cancer (also in spine, liver, ribs and collarbone) after being admitted via a&e unable to walk. I am now wheelchair bound and coming to terms with not only the diagnosis but also being disabled. I am on Palbociclib (systemic therapy) and Letrozole whilst also having Zoladex and Denosumab (bone injection).
A terminal diagnosis doesn’t mean today what it meant decades ago. As others have written here, some people live for many years with it.
I know i found it hard (and still do) to not fixate on death and getting anxious about how long i may have left. But that thought process does no-one any good. Life is here for living!
I personally don’t look into statistics or latest theory on impacts of diet and vitamins etc because i have chosen to live each day as i choose to and if i want that indulgent doughnut then i will have it!! But for others if it brings them comfort to research into diets, therapies, supplements then i’m all for that too. Each to their own…whatever approach that suits you is what counts and matters.
Okay…i’m now bambling on and getting off track! Oops! I hope you’re doing okay and being kind to yourself Victoria.