It is when the tumor spreads from the breast to the bones. People can get mets in all different parts of the body, ie lungs, liver, skin. Hope this helps you
That’s more or less what I heard, plus that she’d had, or was having, treatment in Germany. I find her posts on this thread so interesting, especially her early ones...Thank you
Does anyone keep in touch with Finty? I did hear she was having treatment in Germany and had posted on an American site. Thanks
Dear Silver and Tatiana,
You’re both too kind, I’d say more stubborn, and not liking being told what to do!
Love to you both, Kate x
Love the hey ho! Agree stats are just stats, no more, and frankly the majority can be made to say whatever you care to twist them to say! When I started on Letrozole I remember my Oncologist saying she was very hopeful it would work for me, I asked for how long, her reply was, could be more or less but usually around 2-3 years on average. That statistic made me want to beat that time frame and gave me something to aim for, so very much a positive for me. Kxx
What an encouraging quote & you did made me giggle about one's changing attitudes to statistics...so very true xx he, he, he.....
Obviously within reason but I thought this was a free forum for all? Nobody should be made to feel like they’ve been ‘told off’ because they’ve posted a few stats! Reading them certainly doesn’t trouble me, they are what they are, like them or not and yes, before I’m told, I’m fully aware of their reliability and outside factors involved. There’s a lot posted on here that some of us disagree with, but are tolerant enough to respect others posts, whether we agree and believe in them or not.
Windflower here again,
I hope I haven't worried anybody by repeating what the nurse said about length of time people live with secondaries. I think she shouldn't have said that and in any case, the statistics she was quoting must have been out of date. People live much longer with secondaries now and I certainly wouldn't ask anyone how long I've got. We just have to carry on as normal, once the shock has worn off.
I'm not a football fan, but still watched the match and was hoping England would win. It's a shame they got so near to it. We've been switching between tennis and football recently and I now know more about the scoring systems they use. (Have never been able to hit a ball with a raquet(?), myself!)
I'm obviously been told off here so I've removed the stats.
I had said that there are those of us who want the stats & those that don't....but I really was most certainly not trying to upset anyone! Far from it......
back down my rabbit hole......A big apology to those I've upset.....x
Silver...most of us have learned not to look at stats...how can they possibly help you? They won’t give any reassurance Posting them will possibly depress other people who would rather not know too.
bc is not 1 disease, but maybe hundreds. So they can’t compare like with like at all. And we don’t know what they ARE comparing....so they are complete ba*lls, sorry.xx
I guess there are some of us who want surety and others who'd rather not know
For myself, I've decided very much to live each and everyday...for that's the only way I know how to cope.I really do not think about it, most days.....
I guess we all have to figure out what is best for us. Its not an easy journey, by a long shot!
Big waves to you all,
I am a bit puzzled by how long secondaries have been present as they must have been there before they are found. My primary breast cancer was in 1995 and I had a lumpectomy, "mild" chemotherapy |(including Methotrexate) in tablet form, radiotherapy and then five years of Tamoxifen. I had a bone scan which was OK. I didn't have any CT scans - I don't know if they did them then. Then 15 years after stopping Tamoxifen and being discharged and 20 years after my primary (I don't know what kind of breast cancer it was, I wasn't told, but it must have been hormone related) I was taken ill and it was found that I had secondary breast cancer in my peritoneum and I had to have an ileostomy. I had FEC chemotherapy and then Anastrozole, which I still take more than three years later. Whilst having the FEC a scan revealed that I had multiple bony metastasis that had presumably been there for some time, so I was put on Denosumab injections. So, I don't know how long I've had secondaries. Obviously the little b's were circulating in my blood stream, but does this count as secondaries? I have no soft tissue involvement. I'm not sure if it is still in my peritoneum and it isn't mentioned on scan reports. Apparently peritoneal mets are quite hard to see on CT scans. So, it is over 23 years since my initial diagnosis and over 3 years since I found out I have secondaries. Since then I have been told my disease is "stable", so people can live for a considerable time with secondaries. When I first found out about my bony metastasis I mentioned a friend who had lived about two years after secondaries were found and the nurse said, "Oh yes, two to three years is the average time for people with secondaries." After coming on this forum I realise that I am by no means unusual to be living with cancer, so long after original diagnosis.
G'morning & hello to nicky, anne30, f-the-f & tatyana,
Thanks most sincerely for sharing your 'Ca stories'. I'm learning such a great deal & I appreciate this. This disease can be very isolating.
Your other comments have given me 'hope'...such a vital commodity for us all. The uncertainty is sometimes hard to bear but my primary weapon is humour.....its the only way to keep my emotional head above water.....
Thanks for your kindness ....
I'm just silver...xxx.....
Hi, yes I find it very surprising that an oncologist has only heard of one other person living more than 10 years with mets! When I joined the forum, when my mets were diagnosed in 2008, there were quite a few ladies who had lived about 10 or even more years with mets and that was obviously before any of the newer more targeted treatments were available to them! One lady was on Capecitabine for 9 years and I have a friend who lives locally to me who has lived with bone mets for at least 15 years (she’s HER2+). Comments like theirs don’t really instil you with confidence do they?
As to the post menopausal question I had zoladex and tamoxifen in 2003 after my primary dx and had awful menopausal symptoms but I was 41 so some years away from my natural menopause. When my mets were dx 5 years later (by which time I was still on Tamoxifen but only had zoladex for 2 years) my periods returned. I’m sure this surge in hormones was what brought my mets on sooner than they would have done. I decided to have an ovary ablation as a blood test post chemo showed me to be peri menopausal so I did not want more hormones being produced and didn’t want to have zoladex again. Chemo most often will push you into the menopause but it’s not a definite outcome so it’s best to have a blood test if you’re unsure.
I'm very sorry to hear of your triple negative diagnosis. Does this mean that you've had secondary cancer since 2002 and that the type of cancer has changed. Sorry...I'm a lil' confused. Are they now treating you with different types of chemo.?
I'm amazed to hear that some of our number are at the 10 year mark. My oncologist said in all his years he's only known one patient get to that milestone.
Are there any here that are post-menopausal naturally? I believe the treatment is somewhat different.....
Wishing u all a good Monday! xx
Many thx for your in-depth reply. It means a gr8 deal to me. You give really good advice. I'm 3 years in from my secondary diagnosis....& yes,even then, I had absolutely no idea. There is a lovely companionship on this forum. Its ever so warming. You have done amazingly well; being 10 years on this road. I feel less alone when I pop in here. I live on my own & attend most appts. solo. In a way, this does make it harder.
How lovely to hear from you....
Wondering how you are all coping with this incessant heat. I've wilted as I dont much like it over 21C!!! What a grumpy one.....I'm a spring & autumn gal.....
With love & thx to u all,
I was so pleased to read about your results. What a winding path you have trodden. what a tangled web cancer can be. Hope holiday was good too.
I have met Carolyn once or twice but never her accompanying spiders. Carolyn, Fran and I did however once have what must have been the worst cream tea in Devon.
I'm sorry you are having to join us so soon after primary. Nicky is always full of good advice. The only other thing i would say is don't Google, stick to reliable websites like this one, MacMillan and Cancer Research uk
love to all Bon x
Thanks ladies, believe me it was a big relief (slight underestimate!) to get the results and yes, after quite a few years of IV treatment and also oral chemo it’s nice just to deal with the SEs of hormone treatment! Even though it involves a quite painful injection into each buttock every 4 weeks and a very undignified stance. I just have to make sure I have my pretty knickers on instead of the big girl pants 👙
Just to say (to feelthefear) surgery is only done if the lesion/s are in an operable position. I am HER2- so it didn’t matter what the receptor status is, that is useful to know to tailor the treatments rather than deciding if you can have surgery or not. I was lucky to that extent that the main rogue lesion that I wanted removed was in the right lobe and quite isolated so it could be got to. Also it depends on how many lesions you have, I was also lucky to have one of the UKs leading liver cancer surgeons operating out of my local hospital so I had complete faith in his ability. As it turns out this rogue lesion was a completely different receptor status than my other mets as it was triple negative! It explained a lot when I got the biopsy results s no wonder it used to shrink whilst I was on chemo but then grow when I went onto hormone treatments (whereas everything else remained stable, or shrinking, at all times)
Well done Millie as well for getting Stable Mabel results, whoop, whoop - enjoy it, it’s a real weight off our shoulder - until the next set of scans and results of course - but they’re a few months away.