Awareness of life with a secondary diagnosis

Hi everyone,

Apologies if anyone finds this contraversial but it’s been running through my head, particularly after reading the Corrie thread and after having various conversations.

I appreciate that learning about secondary breast cancer tends to be left to those of us who have been diagnosed with it but is this right? Should there be more media coverage of the effects of living with a secondary diagnosis? Or is that just too scary for those unafffected by it?

The awareness of breast cancer has been hugely boosted by many campaigns and there is no excuse for anyone to be unaware of the disease and that is great. But as has been seen here many wonderful women are being taken prematurely from their families by secondary breast cancer. I don’t for a moment think that educating people about life with secondaries will conjure up a magic cure but it might help people to stop making the assumption that all breast cancer goes away after initial treatment.

Sorry, that’s all a bit rambling … I suppose what I’m asking is should more be said about secondary breast cancer or not?

Bad Fairy x

(Used to be Esmeralda but forgot my password so had to re-register!)

I think it is controversial but I do feel that there should be more awareness of what life with a secondary diagnosis is like and, indeed, what it means. For me it’s part of the pink fluffiness that has somehow made bc appear to the general public as something very treatable and preventable. Because, unlike many other cancers, many people survive many years after their primary dx the “survival figures” for bc can be easily misunderstood.

Yes, it might be scary for those with a primary dx who haven’t sought out that information for themselves. However I actually believe most people after a primary dx do know that they can’t consider themselves cured and that it might come back - raising awareness in the general population who don’t know this, might give everyone more support and understanding. That surely can’t be a bad thing.

Just my thoughts … Kay

Not convinced, I’m afraid! Think of all the other illnesses/diseases which are terminal. Do you know and understand them? Probably not, as unless you have a vested interest-ie through a friend or family member, you would have no cause/reason to want or need the information. I have two friends whose families have serious heart conditions-I’m now reasonably knowledgeable, but only because there has been a reason for me to be so. Otherwise I would still have misconceptions.

I think we have to accept that we cannot educate everyone-the task is simply too huge. If we can all spread awareness amongst our nearest and dearest-and perhaps a bit further-then we’re likely doing as much as we can. Yes it’s vital to us-but there are many other diseases which are vital to the people suffering them and their families. Everyone’s priorities are different-such is life!

Thanks for your thoughts Kay and Elaine.

Kay, I agree that the “survival” figures for bc can be misunderstood. It also concerns me that the realities of a bc diagnosis can be lost in amongst all of the pink fluffiness. To me it gives the impression that it’s a bit like having a nasty bout of flu’, take the medicine and all will be well and if it isn’t all well then you must have done something wrong along the way. We all know that isn’t the case but it worries me that bc is going along the route of being seen like that.

Elaine, no we can’t educate everyone and neither can we expect everyone to know everything about every terminal illness, that would be unrealistic. I think what I was trying to get at was the irritation of only every seeing bc portrayed as a primary diagnosis in the media. A secondary diagnosis is somehow pushed under the carpet because it’s too difficult to deal with. Why? If a soap or magazine runs a story about strokes they don’t hide the fact that a stroke can kill. BC stories tend to be a primary dx, surgery, chemo/rads and then getting on with life as before. Even then that isn’t allowing for people to understand the long term emotional effects of a primary dx.

Sorry if I’m ranting, I think I’m just hitting back at the Corrie effect! I’m fed up of people (who I thought I’d educated!!) now reverting to the head in the sand approach and telling me all will be well.

Bad Fairy

I do empathise-and find this happens a lot with me too (I was diagnosed with mets to pleura, liver and bones 2 years ago). But I remind myself that those who make these type of comments are out of their depth. They dont know what to say (I think they do understand that we are terminal)-do they sympathise with us, get angry at this disease, and at our lives being so cruelly, painfully and prematurely curtailed? Or do they try to give us some hope that our disease may be controlled for a fair length of time? I can only speak personally, but if they were to go down the first route, I simply couldn’t cope. I have enough to handle dealing with my own anger and grief,without taking their’s on board. Giving us a glimmer of hope? Ok, realistically we know and accept that miracles are few and far between-maybe one person in a few million may spontaneously “cure”/go into long term remission. But for most of us we are measuring our lives in a few years. Perhaps I’m naive, but I don’t think people are being hurtful-nor lack the basics of the knowledge which we have shared with them. Rather they don’t know what to say-they could get very different responses from us one day, to our reactions another day. I know there are times when I’m short tempered, and don’t want to communicate-speak to me about anything except how I feel. Other days I’m grateful for their concern-so if I don’t know how I will react from day-to-day/hour-to-hour…how can they know what to say for the best? I genuinely believe that their intentions are well meant-if at times their heads are in the sand-well, so too is mine! It’s all part of a coping mechanism.

In terms of educating people further-was there not a push some months ago here to set up a seperate group to address this very issue? I have no idea if it made any progress-somehow I suspect not.As a patient who has been undergoing chemo now for 2 years, I simply wouldn’t have the necessary energy to take on a wider involvement into changing the perception and public’s understanding of secondary b.c. I admit to being selfish-I have to try and conserve what energies I have for staying alive! I think that to undertake any far reaching changes, there would have to be a large, committed group of people who could share a huge workload-continually recruiting more people to step in when the inevitable happens, and current campaigners can no longer continue with their input. Should such an organisation exist-do let me know, as I would willingly participate. But starting from scratch may actually need to be done by healthier people-eg, primary patients who are fully aware of the risks they face in the future. Ironic, isn’t it?

Yes Elaine, I agree there is a dilemma, I think it is really important to equip people with as much information and knowledge as possible, but the problem is that the secondary group more often are coping with the effects of the disease, which means they are often exhausted, and trying to live their life knowing that there may not be long.

Having said that, it’s not a good excuse not to try, After all the biggest shock i experienced when going into oncology centres where the number of women with walking difficulties either in wheelchairs or with sticks as a result of bc. I had never thought for a moment that, that would be a by product of bc - until of course it happened to me. Not sure that many primaries would realise the imp[lication of bc once it has spread to the bone - which lets face it is often seen as the most innocuous spread.

I’m not sure if my chemo unit is typical. But primary/secondary/all cancers are treated at the same time. It can be exhausting even dealing with this. On quite a few occasions, I’ve been chatting in a group, in the waiting room, whilst we wait to be called. Of course, everyone wants to know whay you are here/how long your treatment is, etc, etc. I prefix my answer with, “you might not like what I have to say…” Are primary patients ready to hear that their hopefully treatable cancer can recurr many years down the track? (12 years in my case). They are at the start of their journies (I make no apologies for the cliched metaphors). I’ll happily correct mistakes,eg, one hubby who was “fighting all the way to get his wife herceptin”, even although she wasn’t HER2…cue Elaine with info re herceptin…I tend to err on the side of caution in advice-remain alert and vigilant (preferably without becoming obsessive about every ache and pain)-but at the same time, if primary patients can move on from their cancer episode, then why shouldn’t they? Not everyone wants to live brooding on the threat of recurrence-do any of us secondary gals think back to the in between years, and think, “gosh, I wish I had spent more time worrying about mets?” Or can you look back and think…I enjoyed these years as best I could? Moreover, there seems to be the idea that primary patients should equip themselves for recurrence-again, difficult I feel. Had I done so post primary, any info I gleaned at that point would have been long redundant by the time I needed it. There may be some people who choose to spend much of their time researching cancer treatments, etc-but surely for the majority, until need bcomes a necssity, the primary patient could and should try to move on from their illness and live life to the full as far as possible?

I agree that we have to try and do something-but energy levels, and continual rounds of treatment make commitment hard. Not impossible-as I said, I would happily do more. But it would need to be in sporadic bursts-I don’t think I could commit to a regular/weekly contribution. It would take a team of healthy people to do that!

Elaine you’re so right, it is ironic that it needs healthy people to build something and maintain it. I would gladly give some time and energy to highlighting the effects of living with a secondary diagnosis but don’t really know exactly what I’d be fighting for. More treatment options? More widespread understanding? The list is endless really and different days see me prioritising things differently! Needless to say energy levels also play a big part in how determined I feel about trying to change the world!

There just seems to be so little information available unless you are aware of and have access to forums like this.

Celeste, your comment about spread to the bones being seen as innocuous was how I felt when it was confirmed I have spread in my spine. I was told not to worry as it’s not life threatening (my initial diagnosis 4 mths before was straight in with bc and spread to liver and lungs). I came out and did some big stomping in the car park after that! I was astounded that the quality of my life was seen as much less important than the quantity.

Until my diagosis, my perception of Cancer was that you almost always died from it. I am an information seeker and did loads of research which told me my prognosis was not good but I was met with continual optimism from my oncologist and breast care nurse.
Even since the diagnosis of mets in my spine and liver, 4 years after my primary diagnosis, my oncologist still says I could live for 5 -8 years. I find it very difficult to believe from what I have read.

I am frightened but tend to keep these thoughts to myself. When people ask me how I am I never lie but say things like, not too bad. I want to be with upbeat people and don’t want to be reminded of my situation all the time. I want to be cheerful company not a misery.

Some people just do not want to know the truth. My mum refused to accept she was dying of cancer. That was how she coped. If people want to believe they are cured surely it’s their choice.
I hate the pink fluffiness but apart from that I don’t see a problem.

Perhaps there should be a cancer awareness month, as opposed to breast cancer awareness? Explain what cancer is, show how cancer cells divide. Teach men and women how to look out for cancerous signs. Stress the need to drink moderately or not at all. Emphasize that smoking kills. Push the ‘slip, slap’ slop’ sun message. Show what life is like with a secondary diagnosis. Explain the side effects of cancer treatments. Perhaps if all the charities came together under one banner (Cancer Research UK) we could kill the whole Pink Thing, raise more money across the board along with improving cancer awareness in general.