I appreciate that this is a very individual thing, which will therefore differ greatly from person to person, but I’m just wondering how you cope with the news of a secondary diagnosis?
The reason I ask is that on monday I am due to get the results of a CT and MRI scan. I was sent for these scans after a bone scan showed an area on my lumbar spine that was concerning and needed further investigation. I am not confident that it is ‘something and nothing’ as those closest to me have suggested. Whilst they have chosen the optimistic path I am preferring instead to take the realistic route. Not that I wish to be over dramatic, rather that I do not want to set myself up for a fall.
My gut feeling is that on monday the news will not be good. There is a chance that in this case my gut feeling is wrong, but at the moment I’m not hopeful. However, try though I have, I can not imagine how I would feel, and indeed react, if I were given the news that my cancer had spread.
I appreciate that this is a big ask and a massive intrusion, but if anyone were willing to share their experiences of how they felt when given the news of a secondary diagnosis I would be very grateful. As I said at the start I realise that this is a very individual and personal thing but I’m just trying to guauge what its like to receive such news and how it is digested in the first few days.
Thank you in advance to anyone willing to share their experience,
the first few days were actually the easiest. Sure, you get a shock, but it’s one you half expect anyway. As for coping…what choice do we have. My oncologist says I’m a strange patient I take the worst news standing up but when she does have a bit of good news I break down crying. Nobody can predict how you will react, but I’m sure they’ve seen it all before. Unfortunately you wouldn’t be the first one to get this news and I’m sure there will be many others following. As you said, everybody reacts differently.
I hope you are wrong I really do hope you are wrong.
I think you are jumping ahead, you dont know what the situation is and how anyone else responded has very little bearing on how you will feel if this happens to you.
if it does happen we wil be here to offer support and if the scan is clear then we will be first to congratulate you,
I hope you have good news on Monday but understand your wish to do some psychological prepartion in case your instinct that it will be bad news is correct.
My case is quite odd because I have never technically had a ‘secondary’ diagnosis but I have been told my cancer is terminal. I got a regional recurrence in April 2007 and immediately had bone and CT scans to check for spread to other organs. They were OK so I thought that was 'good’news but my oncologist then had to explain that the regional tumours would not be curable, and that effectively I was at ‘the good end of stage 4’ even though classification systems would have still called me Stage 3c. It took me a while to get my head round this…and has continued to…2 years later after continuous chmeotherapy bar one 4 month break my tummours are more extensive, I have spread to axilla in 'other armpit, and larger tumours in neck and chest which have caused damage to my eye nerves and my vocal chords. I am ‘terminal’ in the same way as anyone with stage 4 is terminal. My other organs and bones are still OK apart from my lungs where there have been some ‘inflammatory changes’ which I suspect will turn out sooner or later to be mets.
At a ‘head’ level I have long accepted that breast cancer is going to kill me and may kill me quite soon…I am able to talk about this openly and realistically which helps a good deal. At an emotional level it is harder…almost impossible to believe that one day soonish there will be ‘no Jane’. I am very frightened of the process of dying from cancer but having a firm non religious set of values OK about being dead…well not OK but sort of resigned.
I don’t think that coping with a terminal diagnosis is a linear process…all those stages about anger, denial, acceptance etc. I think its a more fluid process where people (or at least I do) go through a cyclical process of differing emotions…the rollercoaster writ large.
I am nearly 60 so much older than you. I think it is a bit different being older and ‘coping’ with the news than it would be younger, but hard, hard hard at any age.
The hardest thing I find is coping with uncertainty…everyone’s diagnosis is a bit different and some people live a long time with mets, and others, frightenly don’t. I often wish someone could give me a death date now, but no one can so I stumoble along best I can…doing some things which are preparing for premature death (chucking out the love letters from former lovers so partner doesn’t have to read them after my death!) and trying to do ordinary things.
I know you had a poor prognosis first time round and really understand (I think…perhaps I am being presumptious) your realistic approach to the possibility of secondaries.
Hi Kelly
I will now add a shortened version of my earlier post which got lost as I think I posted at the same time as Jane and this new site doesn’t seem to allow it.
So, briefly:
Devastated
Sick in the stomach
Sad at what I wouldn’t get to do or see.
Upset - cried with hubby
Upset - cried with daughters
Emailed friends and family as couldn’t face saying the same thing over and over.
Felt very lost for a few weeks until treatment plan was sorted.
Only felt ill during chemo, otherwise OK
Try not to think of what might have been.
Live life to the full and appreciate every moment - but that’s just MY attitude generally
Got loads of support and advice from this site and it made me realise I wouldn’t necessarily die within a month or 2.
I know what you’re going through, I was in the same position this time last year, but I hope your fears do not come true. Hope all goes well for Monday but you know where to come if it’s not good news
Nicky x
Well u know how I am - LOL - and you know all about me, but thought would post anyway.
I was convinced the news would be bad after my initial dx and scans. To say I was devastated is an understatement. My world shattered into minute pieces, and I fell apart. I could not talk to anyone, text all my friends and sort of locked myself away for about 2 weeks, only seeing one friend during that time. But slowly I got back into routine wiv my babies and started to see my friends, who were all brilliant and even sent me flowers and stuff to let me know they care and were here for me.
You know how I am up and down, but wiv you all in the Ho Hummer group and everyone else on these forums I survive and do pretty much OK.
Will be thinking of you Monday and hoping against hope that the news for you is good. There is a chance and you have to cling to that. I will be waiting for your text to tell me. I will also hope that I can send u a happy msg on wednesday too wiv my results.
Kelly, take care and try not to dwell too much on it right now - easy to say, I know - stupid to say too, but you know wot I mean. Am here too for you, if you wanna ring for chat.
Hi Kelly - Yup I hope you’re wrong too. I was dealing with a recurence and had a booked appt for a mastectomy, my surgeon sent me for a CT scan just to be on the safe side. I had a bad back but thought it was a badminton injury.
I was told whilst driving my car (well I pulled over) on the way to GP’s for more painkillers. By the time I finished talking to my surgeon - my car wouldn’t start, as I had had the headlights on and the engine off. I phoned my husband to come and get me to take me to GP’s - so he got told on the phone too. My surgeon phoned my gp to say I was on the way, which was just as well, because when I arrived at the receptionist desk I couldn’t speak. She kept asking me the same question and I couldn’t speak. So that’s my reaction, and that’s happened since when I’ve had bad news.
It’s been said before - your response is your response, and if you scream your head off it’s allowed, after all if not then - when?
I do hope this doesn’t happen, but can fully understand why you are asking the question.
It was a massive shock to me. I had dealt quite well with my original diagnose and thought it would take about a year out of my life and that I would be able to move on after treatment. Turned up for my first chemo session and the oncologist said they had found a hot spot on my hip and sent me for an immediate xray. When they got the results she turned round and said ‘You’ve got secondaries…we can’t cure you… please go and have your chemo’ Literally fell apart. Sat in the room waiting for chemo and couldn’t stop crying. That was almost two years ago. After the diagnose I went through terrible feelings of anger and bitterness of loosing my future with my loved ones. I would n’t say that I have accepted it now but am learning to ‘live with cancer’ rather than have cancer totally dominate my live. At diagnose was given a poor prognosis and told 2 years but I am still here. Still big question mark as to whether cancer has spread yet again to my chest -last two scans have shown up as possible spread. I did and am still receiving counselling which really helps. Also weekly chats with my Macmillan nurse and my GP also help.
Sending you best wishes
Jools
I do hope your fears are unfounded and that you get good news from your scans.
I remember feeling dizzy like I was going to faint when my Oncologist told me I had bone secondaries. I thought I would die quite quickly as I knew nothing of secondary cancer, but that was two years ago and although I am currently on chemo for a local recurrence, those two years have gone on pretty much as before diagnosis. I like to be be positive and believe that as treatments are improving, we are now living with secondaries for far longer than expected so don’t despair, you’ve got a lot of living to do yet.
thank you all so much for your responses. I am mindful of the fact that this is of course a very individual and personal matter, but your posts have helped me gain a valuable insight. Of course I hope that my fears are unfounded, but the fact that my prognosis was quite poor from the start is always in the forefront of my mind.
Maybe I am being a little premature and jumping the gun somewhat, but I felt the need to post and hear your experiences of when you were diagnosed. Of course I know that there is no right or wrong way to react but I am grateful to you all for discussing such a personal matter with me.