Bernie Nolan diagnosed with secondary cancer

I don’t think it is only the media either. My onc, my surgeon and my Macmillan nurse all told me when I was first diagnosed (grade 3 two 5cm tumours, triple negative, no node involvement) that the treatment, if successful, would cure me. I’m pretty sure I remember them saying that and it’s not just because that’s what I wanted to hear. So the medical profession too has some responsibility for this. Now when friends and family say that that is it and I’m now fine and cancer clear, however, I always respond with a vague - ‘yes - for now things are OK’ because that’s how I feel. I sometimes feel that this irritates them a little but tough. I will never feel confident or complacent again. I, like most people when they were diagnosed, felt absolutely fine apart from the lump. It means that I will never again trust my body’s ability to function properly. That’s the legacy for me anyhow. When I hear people on telly saying that they’ve got the all clear - I just do my deep breathing exercises until the sick feeling in the pit of my stomach subsides! hugs to all. Jan x

Thinking back I was told my tumour was ‘potentially’ curable…am stage 1 grade3 Her2+ and ER+ and I did believe that at the time. Now I am not so sure and certainly do not live complacently.
Lemongrove I think your terminology is spot on for both primary and seconday diagnosis. X

“NED” is standard terminology these days and is used by many health professionals, or perhaps it’s just by the more enlightened ones who are up-to-date with current thinking.

Unfortunately, though, there are still those who will tell patients they are “all clear”, when what they really mean is that the patients’ scans and/or other results are currently all clear. And unfortunately, that doesn’t take into account what might be happening at a cellular level, but which can’t yet be picked up by current testing methods.

Similarly, and incredibly, there are even some health professionals who still believe that younger people can’t get BC and refuse them scans, biopsies, etc. on that basis. My point here being that health professionals are not infallible and can get it very wrong, too.

Ok - to all the medics who talk of “cures” and “curable” - why can’t we ever donate blood again? Surely, if we’re cured ours should be as good as anyones!
Just to be pedantic, how can you possibly be cured of a disease that has the potential to come back?

Wow, I’ve just read this whole discussion and I really can’t believe that anyone without secondaries really thinks they can really make valid comments on secondary diagnosis. Before I had my secondary dx I would never ever have the arrogance to think I understood one tiny thing of what it is like to dx with secondaries. I totally back Lemongrove all the way onthis’sdiscussion, and all ladies agreeing with her. Where is the moderator…? This is a secondaries forum…aa safe place for us! Xx

some of us primaries have lived through and nursed loved ones diagnosed with secondaries.I dont pretend to know what its like to be diagnosed but I have lived with the devastation that the diagnosis has caused and as stated in an earlier post,I take comfort from the knowledge that a secondary diagnosis doesnt automatically mean a death sentence and that comfort has come from these secondary threads and the inspiration that many of you ladies give to the primary bc ladies.I dont think any thread should be solely for a certain section of bc ladies but I do think that maybe some people should think very carefully before they submit their post.
Di.x

“Ok - to all the medics who talk of “cures” and “curable” - why can’t we ever donate blood again?”
Good point, Alloway! I was a blood donor long ago - got the bronze badge!
I think that even with secondary cancer, we can donate our corneas, but this probably needs checking out.

Alloway and mrs blue

i dont think its the cancer that stops you from donating but the treatment… Anybody giving blood who hasnt been diagnosed still might have cancer… Its a UK thing… In the US you can donate a certain length of time after treatment… But in the UK its never again Unless you had skin cancer or cervical cancer which were completely ‘cured’… So im presuming that folks with mets in the US cant give as they are usually still having treatment but this is more to protect the donor (If your anaemic from chemo taking more blood off you isnt a very good idea) than to protect the recipient as theres no evidence that you can ‘catch’ cancer.

in Amercas sue anything that moves culture if it really wasnt safe they would be the first ones not to do it… Think the UK is just continuing to nanny us.

Alloway and just to be pedantic back… Lots of diseases you are cured from have a potential to come back… Chicken pox… but like i said just being pedantic really.

I think that some comments are very hurtful verging on aggressive on this post and although some with LOUD voices seem not to be very tactful or maybe just dont have a good way of coming over. for many who have primary BC their biggest fear is getting cancer again… Whether it be another primary, recurrence or mets… But mets is the scariest place but hopefully this discussion will show some of the primary peeps that its perhaps not quite as scary as they origianlly imagined… but fear does make people say and do things that they may not normally do.

lemongrove i liked your descriptions and tbh if somebody asks me i just say no cancer at the mo. But i do know that some people even with a few ladies with secondaries want to cling to the hope that they will be cured.

there is so much about curable, treatable, remission, incurable, untreatable, etc,… The world would be so much better if we could just have preventable instead… Who knows… Maybe one day! But in the meantime we are all living with cancer or the threat of it so lets stick together… One BIG voice shouts so much louder… Than lots of little not picky ones.

Val what you said about how your words were changed i had that experience too last year… I was interviews for a newspaper about having BRCA 2 and they asked about me having mastectomies and i said i hadnt decided yet as it maybe a bit pointless having Had BC three times its possible its already spread so For me it might be too late… But the reporter wrote some people will have mastectomies but for me there was little point as it was already too late… I was really worried my family would be freaked out that i was keeping something from them.

another incident this week speaking to a guy on the end of the phone about insurance and he did this medical thingy and ask was cancer still confined to breast so i said no, he said to nodes under arm, i said no, he said to where i said to nodes in chest wall… He also asked about other medical problems and we will cover your high cholesterol but not you breast cancer or your metastatic breast cancer… Now i know that medics refer to any cancer that has gone anywhere out of breast even to lymph nodes is termed as metastatic but most people dont… I think there is faults all round with the language used. I complained to the guy as i hadnt mentioned the word mets to him, but did worry me that somebody with primary bc would be told they werent covered for their metastatic BC… Admittedly mine is stage 3 but it coud be really shocking to hear that from your insurance salesman and not your surgeon.

Not sure if that makes much sense… Cant sleep as worrying about my wee friend with brain mets who isnt doing very well. Prayers for Kazza.
love and best wishes to you all.

I have secondary bc in my liver and bones - so I have cancer cells in my blood, despite being on treatment.
It makes sense that I cannot donate my blood.
Alloway, does this make sense to you?

Mrs Blue, I think maybe you have misunderstood Alloways point. Alloway was just saying that some doctors use words like cure, all clear etc, when they know that is not the case - and that is evidenced by the fact that they do not allow those who have been diagnosed with cancer to be blood or organ donors.
I agree it would be fool hardy to allow cancer patients to be donors. I read recently about someone in the US who developed breast cancer after receiving an organ from a dead patient who had breast cancer 12 years previously, but died of something else (apparently in the US, if someone has not had a recurrence in a certain amount of time they can be donors). They were able to prove that the BC arose from the infected organ. Desperately sad situation, and just goes to prove that cancer can hang about undetected for years.

Dib, I totally agree. I think we’re all in this together. It doesn’t matter if you have a primary diagnosis or a secondary diagnosis, we all have the sword of damocles hanging over our heads. I think talk of cures, beating breast cancer etc, shows a total misunderstanding of the complexity of the situation, and skirts over what having cancer actually involves (in particular it’s emotional impact).

Hi Ladies,
Wow some very strong feelings but very much like what gordok1 has said and like the way she says the real world isn’t that clear cut I am just begining to see that for myself and feel very scared of a recurrance but am struggling through my daily life right now coming to terms with my first DX and being only 1 week out of all my treatments (other than tabs) am hoping that my fear of it coming back won’t stop me from moving forward in a positive manner without letting that fear rule my life once I have got to grips with the loss of my oestrogen gordok1 has given me hope that this is possible I also wish Bernie the best of luck and it’s easy to put on a public face and let people believe your coping very well but am sure when in private that story is very different.

What an interesting thread, which I’ve read from the beginning. Just joining in to send my best wishes to all secondary ladies, both those whose treatment is keeping things under control (note, not “cured”) and for those who are having a particularly hard time of things at the moment.

When I was asked on a radio show, “so you’re cured now?” I just replied “no, there’s no such thing. The best they can say is there is no evidence of disease. And I hope it stays that way for a long time.” So far so good, but that sword of Damocles is still there. Yeah, it’s probably there for every human being (as everyone dies of something eventually) but could it be that with a cancer diagnosis we are made more aware of it because our own particular sword has a very clear identity?

I know you secondary ladies don’t feel particularly brave/strong/inspirational, but you have definitely helped us primary ladies, both in dealing with our own diagnosis and in understanding that even if we are unlucky enough to get a secondary diagnosis it’s not NECESSARILY going to be a “dead in a couple of weeks” kind of thing (I must admit, when first diagnosed I had that one hit me in the face, before I had learnt anything about BC).

For that, and the support you continue to give, I thank you.

I was pondering the blood donation issue with cancer patients, and CRUK has this to say .
http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/can-i-donate-blood-if-i-have-had-cancer

Also, i was wondering IF people can be considered cured after treatment for BC ,why we are discrimanated against Life Insurence? I know there are lots of other illnesses that can be considered cured and come back like Lulu quite rightly says , includeing Chicken pox for instance, but i doubt if Chicken pox would struggle to get insurences.
In any event, dont scientists inject mice/rats with cancer cells in order for them to grow tumours? to be able to do research and test out new treatments?.
I have often thought about the number of people who may have cancer unbenown to them and are donateing blood , maybe this is one of the reasons that blood transfusions are not given so freely these days as it is known that blood transfusions can cause its own risks too.
Linda x

hello everyone - as Choicem says this is a great thread and i really appreciate all the thoughts and comments - as ever Choicem you sum it all up beautifully and i thoroughly support your thanks to our secondary friends. My non cancer friends simply do not get it at all, the sword of damacles thing- i hit a bit of a low with it recently - you may have seen my post about all my mates laughing and joking about cleveages for ages one drunken friday night - it caused a spiral of new fear and anxiety that i thought was long gone (DX feb2010) …but then i read about you secondary lasses and your challenges and pills and fears and i feel inspired again i really do - same as when i was on FEC-T - its the we can do it together thing.
thought of my friend helen again today who died in september - and now i can think of her in a good way, all her achievements and successes - anyone interested in interior design check her out - helen green design - its stunning stuff.
warm wishes to you all from sunny newcastle, N

Thanks for the link, Linda. That confirms what I was told by the Blood Service; that people who’ve been diagnosed with the vast majority of cancers can’t give blood because of the increased risk of there being cancer cells present, compared to the rest of the population, not because of any treatment effects.

This is a very good point and, together with the issue of insurance, again points to the fact that there is no such thing as “cured”, until you die of something else.

A number of people have stated that secondary BC isn’t a death sentence. Unfortunately, it is just that - our BC will kill us and, in most cases, it will be severely life-limiting. However, Chocciemuffin has it right when she says that it will not necessarily be an immediate death sentence. In the meantime, every scan and every time a treatment fails, it’s torture. Yes, we all live with the fear, whatever our stage, but the fear has become a reality at Stage IV.

I think we are in this together too. I shouldnt bother posting all you get is attacked for having a point of view.

Golightly, I really hope you won’t stop posting - it’s so important for those of us with secondaries to have our voices heard, especially on a secondaries forum (if not here, then where?!). We already have to hold back so much, to protect our loved ones for example, which is why so many of us rely on these forums - so that we can scream, cry, rant and express our fears without censure. This is your forum and you’re entitled to express your opinion here, without criticism and without feeling like you’re coming under attack.

Golightly, please don’t stop posting. Angelfalls is absolutely right.
Just want to say one more thing, in answer to those who say it’s OK for celebs and the media to use words like cured, beaten, etc, because it gives hope to those going through treatment. I would really like those people, just for a moment, to imagine ladies with secondary cancer laying on the sofa in a great deal of pain and discomfort, having just gone through the latest round of chemo/rads etc, knowing the treatment won’t cure them, only prolong their lives. Do you think these cancer patients find clap-trap about cures and people beating cancer encouraging? The answer is no. They feel this trivilialises the reality of cancer, makes what they are going through invisible, and is just plain sick-making?
Hope does not come from pretending that everything is OK, when you know it isn’t, but from confronting the reality, learning about cancer, and gaining confidence to deal with it.

Oh, Golightly, don’t feel like you can’t post here. Mostly because you are right, this should be the one safe place you can be you without worrying about someone not wanting to cope. But, as a side issue, please could you help those of us with primaries who WANT to learn from you, so all of the facts, all of them not just the “fun” “positive” “cheerful” ones, can be brought to the table. Most of us hear your pain, and we are trying to understand.
I know that this is a secondaries thread, and I STILL blame the forum for the fact that all the threads are mingled on the “latest posts” page, so when you see one that catches your eye (Bernie Nolan!) you click on it without realising where in the forum heirarchy you are. Quite obviously I should be saying “I” here, except that I think it’s how several of us ‘primary ladies’ got sucked into this discussion, almost by accident, as it were, and have stayed, despite the fact that we’ve all got a bit heated from time to time, because we DO care, we DO want to understand, and, here I am speaking entirely for me–I want to take the arguments out of the pink and fluffy realm. I am, slowly but surely, learning to look the facts in the eye, and, as I think LemonGrove said (here, somewhere else?) learning to live in the here and now. I like your last sentence, Lemongrove, “confronting the reality, learning about cancer, and gaining the confidence to deal with it”.
Golightly, my father used to say “Don’t let the turkeys get you down”, meaning don’t get swacked by silly people who don’t know what they are talking about. I know that is easier said than done, especially if you feel like cr*p. But keep posting, your voice makes a difference. xxx