Hello
I was reading another thread and the question of whether or not secondary bone cancer is a chronic illness came up.
I thought such a debate needed it’s own thread.
What does everyone think about this, having talked to their oncologists or read up on it maybe?
Last week I was told that the cancer had spread into a rib, hip and most of my spine (last year I had my first spread, into sternum and soft tissue around it). I was told this news as though I had a bad bout of flu, or even a normal bout of flu. There certainly were no downcast faces etc.
This made me think that perhaps secondary bone cancer is not so dire and maybe I could live a long time with it (although as I have spread in soft tissue this is not likely anyway).
Is that the experience of others?
I hope no-one is cross with me for questioning whether this is a chronic illness. I did not believe it to be but…
Ena x
Hi Ena
When I found out I had bone mets last year I was (as we all are) devastated and thought my death certificate had just been written. The only time I had a glimmer of hope was when I saw my somewhat weird and cheery onc who said it was an incurable illness rather than (necessarily) a terminal one. However, I’m not grasping at straws and I do read these forums so know that if mets progress then my outlook may change. But there are ladies, either on here or in the ‘real’ world who have been living with bone mets for many years, and this is before some of the current treatments were in use. I think it’s also up to your individual situation as well and depends on the type of BC you have. I suppose diabetes and other illnesses were once terminal until medication and controlling drug regimes were introduced. I know BC is far more unpredictable than other illnesses but I hope mine, yours and everyone else’s mets are controlled by the right medication to stop things developing further and keep us all stable for a long time.
By the way this is my view and I don’t want to upset anyone else on here if they have different views.
Nicky x
Hi all, yes some do live with bone mets for years, I was diagnosed with them in 2003. Some get further organ involvement quite quickly and some die of bone mets themselves within a couple of years or less. It’s all very uncertain. I’ve often read here that you cannot die of bone mets alone which sadly (and I’m not into frightening people at all) is not true. And often our bone marrow has involvement too.
In saying this I’m feeling well, pain free, much better than I felt in 2003 and I was diagnosed via a fractured hip, stage 4 from the beginning so life can certainly get better again when times seem bleak. I knew a lady who used the same hospital as me who lived nearly ten years with her bone mets…and none of her treatments ever seemed to work. Penny Brohn, one of the founders of the Bristol, now Penny Brohn centre lived nearly 20 years with her bone mets.
Like Nicky I was told my illness is incurable but very treatable.
So I’m ever hopeful but realistic too…I’ve seen new treatments introduced since my diagnosis… Love Belinda…x
Thanks Ena for starting this thread…it was me yesterday who questioned calling bone mets a chronic illness, and after I had posted I felt a bit bad for bringing this up on someone else’s thread. …sorry. You are right…this needs a thread of its own.
I think this is a complicated issue but then breast cancer is a complicated disease. It is certainly true that some people live for many years with bone mets, although I suspect they are fewer in number than we may think (we all keep hearing of the same people over and over again so it sounds a lot?)
One of cancer’s big problems is the process of metastesis…spread…and people with bone mets are of course always at risk of spread to major organs. But also, it is possible, though relatively unusual to die of bone mets alone. According to Susan Love’s Breast Book 25% of people with mets get them first in the bones, but ‘most’ breast cancer patients eventually get them, even if bones are not their first site of spread.
Some cancer experts are beginning to talk about breast cancer as a ‘chronic’ condition…e.g. Karol Sikora who is widely quoted in the press, but my own view is that this is premature.
I understand that to talk of bone mets as a ‘chronic’ condition may give some people more hope but this hope comes at the price of perpetuating inacurracies and myths about breast cancer. Breast cancer is not a single disease but many, and while some breast cancers now respond very well to treatments, others still do not. There will be women diagnosed with primary breast cancer on this snowy winter’s day who will die long before some people who have already had bone mets for years…such truths make me think carefully about the usefulness of calling any kind of metastatic breast cancer ‘chronic’.
In breast cancer culture there is a relentless pressure to be cheerful, and this ‘tyranny of cheerfulness’ (to quote Samantha King) seems to me to be spreading from primary breast cancer to secondary breast cancer. I find this personally wearing, but also politically dangerous. In the last year for which figures are available (2006) about 12,300 women died of breast cancer, a couple of hundred fewer than the year before. If that rate of decline continues it will take another 60 years before breast cancer deaths can be numbered in their 100s…not what I call a chronic disease.
At a personal level I think each person finds their own way to have hope, but I don’t think that talking of bone mets as a chronic disease is particularly helpful. What matters is how each of our diseases responds (or not) to treatment) where and how rapidly it spreads. Its great to hear those good news stories but I don’t think they should be dressed up as something they are not. I think to do so is detrimental to the women who die all too quickly of this disease. Hold the good and the bad stories in your hands together.
Jane
Hi all,
my main problem are the mets in my liver, but I do have some on my ribs and in my lungs too. When I was in clinic last time to have Zometa IV I overheard one of the doctors say to the other patient in the room, that he was convinced the biphosphonates and Tamoxifen would do the trick for her. He said that they concider bone mets to be a chronical disease by now. I just took that to be the gospel truth, because what a doctor says is true…right? Of course, as Jane so rightly said it isn’t as simple as that. For one, it was only one doctors opinion and then of course, every situation is different.
Peggy
Sadly Peggy, some doctors still say what they think their patients want to hear.
Jane
This made for interesting reading as I now face more chemo to get my bone mets more under control. I have had a year of relative normality on arimidex and bisphosphonates but my cancer is now active again… I am thankful for the year I have had and have faith that there will be more times when things are under control.
Living for the moment and each day has been a great way to ensure we have a good family life. It just hits hard when you are told more treatment is needed. I do feel I am sliding down a slippery slope but there may be the odd lift to help me from falling off the cliff!
I wish one and all the luck and determination needed to keep going x
Hello All
I’m inclined to agree with Jane in that I believe to consider any sort of metastatic cancer as “chronic” is premature.
To compare such an unpredictable disease to chronic disease such as diabetes is unrealistic. Diabetics do vary in their response to treatment but regardless of how individual patients with diabetes present it is on the whole a manageable disease. It is also a lot more simple to monitor. HIV is a lot more “manageable” than cancer - its management again largely centres around taking bloods and adjusting medications accordingly.
Thankfully the treatment for cancers has improved and changed a great deal to allow for a better prognosis - and yes there are some whos’ disease will progress rapidly and many who will get longer periods without progression. I think about the likes of Ian Gawler whose mets have not progressed since 1975 and Lance Armstrong who had extensive mets on dx of his primary testicular cancer and has gone on to win the tour de france seven times since - yes they are a minority but hey why cant that be us? Hopefully with ongoing research they will make some incredible breakthrough to stop this disease in its tracks.
I’m not totally unrealistic - i do cry and wish for my life back - and yes i feel cheated - but i think if i didn’t focus on the positive possibilities i would be existing in a complete state of depression. Anybody else out there using relative denial as a method of coping? Anyway off for Zometa and Zoladex no.3 tomorrow - had no pain before diagnosis but now pain gradually worsening on treatment -really hoping its the femara causing the pain or that there is a psychosomatic element involved as will be gutted if spreading already!As I said I have myself enrolled in L.Armstrongs class…
Maria
Hi Maxmari…you are not alone I think I use relative denial…I tend to assume I will be here next Christmas, next Summer, a couple of years time etc. I know fully well I have a terminal illness, not a chronic one, but I can’t see death around the corner. I think my state of semi denial helps get me out of bed on those dark winter mornings! I used to be friends with a small group, there were 4 of us, all local and we all had breast cancer mets. I first met them all in 2004 and by the summer of 2007 there was only myself left. I tend to feel I owe it to those women (and others I’ve met) to enjoy every day they will now never have, never see. If I had approached every year since my diagnosis as though it was my last I think I’d be exhausted by now. We all seem to find our own way of living with this disease.
Take Care…Belinda…x
Thanks Belinda - Well i suppose realistically life itself is terminal regardless of cancer it just makes us think of life as being limited more so than before diagnosis. My mother was 37yo - went out to collect my siblings from school and died in a car crash on the way home - don’t get me wrong people who try saying to me “but none of us know whats ahead of us” make my blood boil because i do find myself looking at people on the tube my age (37) and younger and i am jealous of how carefree they seem!! but having said that there is nothing to stop you carrying on for many more years - you seem to be doing very well and as you said yourself you have seen changes in treatment since your diagnosis - so the more changes the more chances of survival we all have
Take care
Maria xx
We do find our own way of coping with this wretched disease, but I still find myself wishing I could go back and have one day pre dx. Does that make any sense?
Hi Lynni…I’m also posting in the small wee hours…I’m never asleep before 2am these days. Yes I too would LOVE a day of pre-diagnosis…I used to say I longed for a ‘holiday’ a week away from living with cancer. Perhaps it would be too awful to come back to reality though??
Hi Maria, I’m so sorry to hear you lost your Mum at such a young age and so suddenly.
I always thought, long before my diagnosis, I’d never see old age but I don’t know why I had this feeling. I used to always look at the glass half empty but since diagnosis I’ve become more optimistic…I can’t explain it, perhaps it’s a coping mechanism, I now know I won’t see old age so I need to make the most of now…while I still feel well.
About Femara…I was on Arimidex, the side effects are very similar, and I had pain for the first few months. One time I thought I’d broken my wrists, they were so painful but things got better over time. Good Luck, I hope Femara works well for you.
Belinda…xx
Hi LottieLou, I’m now on my first chemo for bone mets, Xeloda, it’s been ok. I’ve been on Xeloda tablets for nearly a year now.
Good Luck with your treatment…x
Hi
Just to re-iterate I didn’t say that BC was the same as diabetes, how could it be? I just said (or meant to say) that before any treatment was available for diabetes then that too would have been terminal and is certainly incurable. It was just an example of how treatments and expectations can can alter over many years. We will probably not be the lucky generation that gets the cure for BC but I’m sure another generation will - after all it’s not like we have ‘caught’ it, it’s our own body cells acting in a way that they shouldn’t. Also DNA was only unravelled in my generation and I would think they answer must lie there. I just hope some of the newer treatments will help us all to have more years than we expected than when we were diagnosed. After all FEC wasn’t widely, if at all, used when I had my primary dx but now seems one of the most used chemo regimes and that was only 5 years ago.
I don’t underestimate (or should I say overestimate?) my time on earth, I would just like to believe I will be one of the few who react well to medication and keep going for as long as possible and that’s how I cope. The only ‘real’ person I know who has bone mets, and lives nearby, was dx when I had my primary and is still going strong - please let me be like her!
As to whether we only hear what we want to hear maybe all the oncs who now say it’s ‘chronic’ should get a rap across the knuckles? I know of at least 3 hospitals (not ones I have connections to) that this is said in. Maybe they see a trend that isn’t being reported yet? Figures for secondary survival rates are not very up to date as we all know. Yep - guess I’m clutching at straws again and burying my head in the sand 
Having said that, I am also like Belinda that I always thought I wouldn’t live to an old age plus that I would get BC. I just hope negative thoughts don’t bring on specific illnesses!
Oh well, back to ‘normality’ today, the snow is gradually going and work beckons. At least it gives me a few hours not to think of BC.
Nicky
A chronic disease is one that is long lasting. So by that definition, bone mets is chronic. There are many chronic diseases that are life threatening such as heart failure, cystic fibrosis, chronic hepatitis etc. And as diabetes has been mentioned in comparison to bone secondaries, lets not be mistaken into thinking that diabetes is a lesser disease than the others. Yes, it can managed, but in some cases it becomes unmanageable and patients do die from complications such as circulatory problems. Therefore, doctors who state that bone mets is a chronic disease are technically correct as it is long lasting and can be managed - depending for how long is a very individual issue.
Hi toothfairy…Ena and All…I was curious so I’ve just googled and looked at several medical definitions of chronic and yes the definitions put bone mets in the chronic group of illnesses. My own muddled thoughts were that a chronic illness was something you could live with to old age but one of the definitions mentions any disease lasting more than 3 months.
Just sitting here wondering if I feel better being classed as chronic instead of terminal? Don’t think I do but perhaps I might at a later date? Not sure I will though.
Hi Nicky…hope you’re enjoying the remnants of the snow…long gone here…it only lasted a day. 
Belinda…x
I went googling too and it seems that it is quite acceptable to describe metastatic bone disease as chronic. BUT let’s not forget that what we have is breast cancer, that it is Stage 4, and eventually it is going to prove terminal. None of us knows when it will move on to attack other organs. So whilst it is good to know that bone mets are controlable I am not sure that I am comfortable with the message that the word ‘chronic’ sends out. I have been ‘fortunate’ in surviving 19 years with breastcancer, and bone mets for the last 7 of them but that doesn’t mean I have had 7 years worry free. Always there is the underlying niggle - will I be here next year - for all of us. Not my usual upbeat tempo - but then I have ‘chronic’ pain!!!
Dawn
Yes, totally agree Dawn…Belinda…x
Many medics do not call secondary bone mets ‘chronic’ Bone mets are not always controllable…some spread very rapidly and horribly.
As I’ve said before I think there are real political dangers in ‘downgrading’ bone mets to a chronic conditon (not least for the implications of claiming DLA under Special rules 1500.)
Jane
Hi Everyone
Thanks for all the replies. There are obviously differing opinions, but the gist of the replies seems to be that, once there has been spread to the bones, this can be controlled by chemo/radio/bisphosphonates. However, the underlying illness is breast cancer, secondary breast cancer, and so has the potential to spread anywhere in the body. Such spread is harder to control.
I saw my oncologists’s registrar today as I had a CT scan yesterday. I was hoping for the results of that today, but will have to go back next week. I asked if bisphosphonates control the spread in the bone and she said usually the bis. did a good job but if they did not they can switch me to chemo - Xeloda. So, the risk of spread is very real, even when you are taking bis.
Another week of worry , waiting to see if spread to organs or soft tissue - arrgh…
Ena x