Help!!!!!!

Hi All

I know some of you out there will be able to help me, altho I also realise theres nothing anyone can say or do to make this easy.

I was dx with primary bc July 07, (triple neg) had chemo, mast with partial node clearance and rads. August 08 - had full node clearance as I found cancer in lymph nodes. Couple of weeks ago I found another lump at outer aspect of chest (very near axilla), turns out have recurrence. Had bone scan - clear, but CT scan has showed secondary to lung - just found out yesterday.

I am absolutely devastated, have cried buckets, am so so scared and just cant see how to move on from this. I appreciate its really early days since being told but all I can see is a big black hole and a death sentence. I know things can be controlled, and some women last many many years, but the speed that all this has happened since original dx is just so scary and does not really bode well.

Altho I always had a gut feeling that I would be a woman who wouldnt do ‘well’ long term, I am so shocked and stunned that I am joining your ‘club’ - spose I always hoped it would never happen.

Thanking you in advance
Love
S
xxx
ps have meeting with onc tomorrow but it looks like taxotere I will be getting (had AC first time round)

Hi spakler

To me as an oldie it seems such a short time since you first came onto this site.

I’ am so very sorry to read your latest devastating news. It will of course take you a while to get you head round this. Hope you can get sorted on your treatment plan soon…hope that some women with lung mets will come back to you with their experiences.

Thinking of you

very best wishes

Jane

Sparkler - Sorry you have had to join us. It’s really early days for you. I had my secondary diagnosis in March and I just about OK now (in terms of talking to people and coming to terms with everything). I still have good and bad days. I found once treatment started I felt better (mentally and physically).

There are lots of wonderful women on here who will be able to provide you support and guidance.

Geraldine

Sparkler

I am so sorry that you have joined this part of the forum, the club that no one wants to join, really i know just how you feelI am sorry to say and it isn’t good. I have seen your posts on the other parts of the forum, After four supposedly disease free years I thought i would be one of the ones who did well so I know what you mean. This disease is such a bastard - it sneaks up on you, you can have no symptoms and then you find out you hve secondaries,

It is such a horrible shock but you do get to a point you can enjoy things again and go out and spend time with family and firends, this forum is a godsend as well as you can ask questions etc from lots of people who have done these chemos. I did taxotere myself and I wouldnt go as far as saying it was easy - but compared to lots of people I found it relatively OK.

love
cathyx

Hi Sparkler

Go ahead and have a good cry, scream and shout. Then save your energy to get you through your treatment, my mets arent lung they are liver, and dx 3 years ago.
I still have days where I cry about the unfairness of this horrible disease but I get through them and you will too, I too have done taxotere, wasnt great but wasnt the worst either.

Take care

Sue xx

Hi Sparkler

So sorry to read about the spread to your lung, and so soon after your first dx. I’ve nothing clever or informative to say to you - but just want you to know I, and I’m sure many others, will be keeping you in our thoughts over the coming weeks. Somehow you will find the strength to deal with this and I hope you have good support at home to help you through. Life can deal such awful blows to people but it is amazing how strong most of us are deep inside. You can always come on here and let rip with whatever you are feeling. Thinking of you and sending really good wishes to you through cyberspace!

V.

Hi sparkler
so very sory to hear you news - such a horrible shock - and you must still be in shock - I was diagnosed with secondaries in bones and liver in september and still finding it a struggle , there is so much to get your head around - hope you have some support - I asked my sister to come with me to see the onc so she could write things down so I didn’t forget things - its such a lot to take in…take care Jaynex

Oh Sparkler, I am so so sorry to read what has happened to you, I have seen so many of your posts and help you have given others, this is a hateful, hateful disease.

Having only last week been told that my regional recurrance had spread after what had been a clear scan and having had a chemo, I too was completely devastated. I think I can understand the place you are in right now. Crying, shouting, at times just total stillness, tears without crying, planning for ‘after’ for my loved ones, worrying about job for me, effects on my Mum and my OH, what life will be like, all of these things and more hit a person at a time like this.

For me, it feels like I am going through a greiving process for the life I will no longer get, and an adjustment for the one that I have now been presented with. People cope though, we get through each day, and we cope with it all, because we have to and because it aint over yet.

Keep your strength Sparkler, at least here everyone understands what you are going through to some degree and you can come here and voice how you feel without any kind of judgement or expectation of having to be ‘brave’ for us.

Lots of hugs
Nikki

Thank you so much for all your replies

Nikki - so much of what you have just said is ringing so many bells - my mind is going at a thousand miles an hour and am already planning what I have to do in my head - spose thats just natural. Just have to learn to slow down and take a day at a time just now - or even half a day. KNow what you are saying about the grieving - thats exactly what it feels like - I am only 40 years old and thought I would be around for many many years - now who knows - altho I know none of us truly know, but when dealt a blow like this it makes mortality come racing ahead.

I have fantastic friends for support, altho not a big family support network - mum just died in feb and dad has heart probs, so altho I am totally honest with him, would not turn to him for day to day emotional support. I also have a 15 year old daughter who I just told earlier - she is now away to her dads and out with her mates - her way of coping. I know who my true friends are and who I can turn to, and thats all I need to know. I also have a fantastic bc nurse, who is more a friend now and I had a wonderful psychologist who I will go back to see on a one to one. I know I have support here, and I will use it - unlike 1st tiem round - I was not one to say ‘help’ but I do now, and that makes a difference.

Wishing you all the best
Love
S
xxx

Wishing you well Sparkler, and so sorry you’ve had to join the club. Hope that when treatment starts you will get some good results, which will help you re-focus for the times ahead.

Hi Sparkler,
I just think you have a lovely handle… and you will keep sparkling I’m sure.
You have a scarey time now, but my secondaries in lungs have been lurking for a very long time and not caused any problems until last year. Try to conserve your energies for treatment which will hopefully shut down growths for a while.I wish you good luck with that.
Keep talking to those lovely people who are your friends. It does get better as you get the support and treatment. Crap time of year for cancer though isn’t it? The sooner you start treatment the better cos then you feel something is happening. I had ec chemo and am now on arimidex hormone therapy ( second time chemo but hair growing back now for christmas, will be nice to be hat free at christmas dinner)
Let your emotion out whenever and however you need to, this is a good way to talk to people experiencing same. I am new to site but have found help here when needed.
good luck and try to keep your sparkle,
Hugs from
lizzie

Hi Sparkler,
I am so sorry to hear this shit news but will welcome you to the club none of us want to be in. But it is a very useful club and we will all help in any way we can even though we may never meet.
I can only agree with what others have said and I am glad that you are surrounded with a network of friends that can help you. I have liver and bone secs recently found malignant omental infiltration so I am in a new darker place! There are others with lung secs so they will be more qualifed to offer help and info to you.
Take care of yourself all the feelings you are going through are perfectly normal we all have them so we understand.

Love Debsxxx

Hi Sparkler, it’s an awful time, just after you have been diagnosed with secondaries. I took to my bed for a few days and refused to get up. Eventually my mum came through the door one day and insisted we were going to Chessington World of Adventures! We didn’t go on many rides, but it helped to get out and about and I found that it was much easier to talk to my mum in a busy public place than at home.

For many, many nights I went to bed and my mind started racing. I too have young children. My eldest was 15 when the secondaries were diagnosed. I think I lived out all of the experiences I thought I might miss in those nights and planned who would be with her when she graduated, who would walk her up the aisle when she got married, who would give her advice when she had her first baby. And the same for my other two. I think I had to do all of that to somehow come to terms with the diagnosis.

Now, well, I just live life from day to day. And so do the family. My daughter, too, has a very full social life and really all the kids live quite normally. What does help, though, is that I have not held back anything with the schools - I have made sure they know what my kids are dealing with and the kids know who they can talk to if they need to.

TAxotere for me was horrible. But I got through it. And at least while I was on taxotere I felt I was doing something - my lumps shrunk by as much as fifty per cent while I was on treatment, possibly more.

Love

Deirdre

Hi Sparkler

I am sorry to read of your recent diagnosis. BCC have produced a resources pack for those diagnosed with secondaries, which includes a DVD called ‘Take each day’.
If you would like a copy of the pack just go to the following link:-

breastcancercare.org.uk//docs/bcc_secondaryrespack08_web_0.pdf

Also if you would like to talk to others in a similar situation please don’t hesitate to join the live chat session on a Tuesday evening from 8pm to 9pm. This session is specifically for individuals with a secondary diagnosis.

I hope you find this helpful.

Kind regards

Sam
BCC Facilitator

so sorry to hear your news. I still remember being told I had secondaries and the devastation and just not knowing what to do. We’d all suspected I’d got secondaries in my lungs but no test showed it up for at least 6 months but it was still absolutely devastating.
i was diagnosed in april 05 and by nov 05, I had skin mets but it was between the may - sept 06 that my breathing and walking became so bad secondaries were suspected but nothing showed. It was only when I found a new lump in the other armpit that the scans showed secondaries in my lungs and bones and liver plus the lymph node. At that time, I was told I may only live 3 months but I’m still here.
I have slightly unusual lung secondaries as mine started in my lymph system in my lungs (lymphangitis) but I now have solid tumours in my lungs as well. More women usually get their lung secondaries in the wall of the lungs and so although the chemos/hormone treatments are the same some of the other treatments are different.
I get fluid inside my lung tissue so have water tablets to get rid of that and steroids to calm the inflammation. At times, my breathing has been so bad that I’ve been oxygen dependent but during chemo it has all got better and been able to run upstairs etc.
We all now take each day as it comes and try to enjoy ourselves and build up memories for the future. The schools have been brilliant and very supportive and as my prognosis was so poor at secondary diagnosis as it effected all my lungs, I’ve had support from the hospice since nov 06 which has been such a help as they support my hubby and children as well. I did feel too well to be seen at the hospice but they have given me access to things I wouldn’t have had access to otherwise so we’re glad we took that step and took up their offer of help.
I don’t really know how we all cope with my illness and none of us can remember life before I was ill, I just know somehow we’ve adapted and changed as a family and we do manage to have good days but I know I never slept and cried continously when first told of the spread and yet I can’t now remember the actual emotion at all. I think I was so devastated I’ve blocked it out.
There are many women here with lung secondaries and I’m sure they can give you more help and advice if you have the other type of lung spread to me.
Everybody on this forum is lovely and supportive so just come on here at anytime and moan, cry, rant or if you get a bit of good news share it!!! I’m sure I’m still here now because of the support I’ve got off the forums so don’t worry about posting anything. I’m sure someone will be bale to support and advise you. It is a bit quieter than usual because of christmas but yoou’ve had lots of replies tonight so hope they have helped.
Love Kate

I have triple negative breast cancer in my lungs and liver, when i found out back in Fevruary i was absolutely devasted to the point that I actually found it hard to speak. I can only repeat what the others have said and although ou don’t think it know you will get a new type of normal and move on with your life.

We all still have our moment about the fact we have had to face our own mortality and that will have a huge effect on the people we love - but we are also here right now and have to learn to appreciate everyday - which can be easier said than done. I still have moments maybe once a month or every six weeks where i feel it all getting on top of me and have a good old cry.

Also, I think it is good to have hope i often just think as long as the new medicines are one step in front of me then that will do me fine - i know some people think that may be a bit unrealistic but we never know what drugs or breakthroughs may be round the corner. I’m really not an airy fairy person and know at this present time this cancer is likely to get the better of me all I’m saying is there’s nothing wrong with a bit of hope - look at the extention of life that herceptain has given to many people.

Love

Diane

Hi Sparkler
I can only echo what the others have said. This is an awful place to be, I was diagnosed with lung secondaries two and a half years ago and am now on my 4th chemo after further progression was discovered. It’s the first few days I think are the worst when you are trying to come to terms with what you have been told and still try to deal with the day to day mechanics of life. I have always felt that things are more manageable once treatment starts. These forums are invaluable to me. I have many good friends that I know care but no one really understands where you are unless they have also been there and the people who use this forum know all about the dark places but also the fact that we can still enjoy our life and make plans particularly with family.
My children are teenagers but I have also found it important getting school on board for support for them as both have exams, GCSE and A levels. Take care and keep posting
Best Wishes Kathryn

I am just like Diane. I pray that the cancer treatments stay one step ahead of me.

Today at the hospital I met somebody with secondary melonoma cancer. She was about to start her second phase 1 trial. The first had kept her stable for nine months. She hopes the next will keep her stable for another nine months and by then she hopes there may be something else available.

It is scary teetering on the edge of new treatments like this but I chose to live with the hope that there will be some sort of a breakthrough,and that I will be here to see it.

Love

Deirdre

I don’t think there will be a breakthrough for me though have fantasies about PARP inhibitors. My intelligent self tells me that there really isn’t anything in the pipeline and I prefer to live with that reality. Would love to be proved wrong but I’d rather plan to die and get some living than plan for living and end up quickly dead.

Jane

I prefer to plan for living and to get some living - albeit recognising that the living may be truncated (now that’s a good euphamism!). I think it is possible to do this even with this rotten disease. But I admit I am feeling rotten tonight after rubbish CT scans.

Deirdre