My secondary dx has come hot on the heels of my primary dx and mx. When we first told people of the primary dx (I felt more comfortable with everyone knowing) everyone followed my lead and stayed positive. Now that we are starting to tell some people that it is secondary BC I am struggling to make them understand that I’m not dying!!
My husband and I are trying to carry on as normal and enjoy time with our son while I am still feeling well, as I haven’t started chemo yet. While some people are great and have expressed the usual sorrow/disbelief/anger etc at the situation before carrying on treating me as they always did, others seem to want to sit and hold my hand and gaze at me as if its their last chance and I can’t stand it!
Unfortunately my BCN was away the week I got my secondary dx. Speaking to her since she suggested looking on secondary BC as a chronic condition - you live with it and at some times it needs more treatment than others - I found this very helpful and have been trying to explain it this way to friends and family now.
I wondered if anyone else had any useful ways of explaining secondary BC to others? I know I’m probably being unfair as its a shock to everyone but I’m finding it hard to stay positive with the when it feels like some people have written me off already. I’m not in denial, I know this is serious but right now I feel fine and I want to enjoy life! Sorry for the moan.
Hi EJ, I’m sorry you have had to join us here, I was diagnosed stage 4 from the start, in 2003.
At first I never went into great detail, actually I still don’t. I’m quite a private person anyway and felt (some) people, work colleagues, neighbours, relatives I hardly see, were much too intrusive with their questioning. Almost would have been easier for some of them to just give me a tick box questionnaire.
And then there is still this idea if you cannot be cured you must have been given 6 weeks or 6 months to live.
I manage to bat unwanted questions away by saying ‘at the moment I feel well’ (which is true, I have had lots of stable spells as your BCN describes) or if asked about chemo, ‘I will have to have more treatment eventually.’
I wish it hadn’t had to happen but a few people I knew well were hand holders and after trying to change the conversations I did distance myself from them for my own sanity. In this instance you must do what is best for you. In our new medicalised lives we need a break of normality, well this new normal.
I never thought I would still be alive today but more of us are living longer after a secondary diagnosis. Unfortunately all of the Pink ‘awareness’ campaigning still hasn’t caught up with this fact. I’m sure some people must think I’m now all ok.
Very Best Wishes. X
It is a difficult situation isn’t it? I think that part of the problem is that, in most people’s experience/knowledge of cancer, the person being treated either has treatment and moves forward (no cancer) or they have treatment and die (sorry that’s rather blunt) with no inbetween.
The idea of living ‘with’ cancer is not easy to understand as it is all so uncertain and that can feel very uncomfortable to some people.
As you feel well, you could say that you have secondary bc that is being treated and you feel well and hope to do so for a long time, but if that should change you’ll let them know.
I have had people who automatically assumed I was at death’s door but as the months have gone on they have adapted to the new normal.
I did mention to someone once the view of mbc as a chronic disease and she immediately said, ‘Oh, it’s nothing to worry about then?’, which wasn’t quite the response I expected. I think the explanation that it can be a long managed disease is perhaps more accurate.
Anyway, don’t let others perceptions dampen your enjoyment of life; get out there and do what you want to do.
I find it difficult when people are nice! My other half tells everyone not to be nice when they are told I have secondary cancer. I find it much easier if they use every expletive under the sun as I have! Personally I have found it easier for people to know what is up and I talk and joke quite openly about my cancer but we are all different and deal with things in a different way. I find the “Oh you are so brave” brigade hard. I’m not brave I have no option other than to get on with things!
Hi,Ej,sorry about your diagnosis,I was diagnosed primary and mets from the start a year ago.
Unfortunately SBC is never publicised with all the pink jolly fluff so people don’t understand what it is or means to live with SBC as Tink said it’s black or white you are cured or die.
One thing you do find out who your true friends are. I have an understanding with mine ,we don’t talk about it and get on and do all the fun things,shopping & coffee shopping. If I want to talk about it I will and they are very understanding and this works well as I get on with life.
Yes,there are people out there who are ignorant ,I had an aunty tell my mother I can’t have cancer as I’m still alive and have been on holiday!
The people around you are in shock and they won’t know what to say but tell them your wishes and hopefully they’ll understand you are not being measured for a pine box just yet!
You moan ,rant ,laugh all you like on here as we all understand what you are LIVING with.
Huge hugs,Helen xxxxxxx
Hi, I’m new to the website but really feel it’s like a lifeline. I have sec BC and am waiting with trepidation the result of a CT scan I had yesterday before I begin my 3rd different type of chemo. I too find it hard sometimes when people say to me they think I’m being very brave as I don’t feel ‘brave’ at all in fact very panicky at times as I’m sure we all feel. I’m positive 99% of the time and just want to get on with a life outside of hospital visits.
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