Hi everyone I have just been told i have secondary on the lungs and am to meet today with the oncologist .HELP I am waking in the night terrified , broken hearted , and wondering what to do for the best . Has anyone any suggestions on how to deal with it ? What works, what doesn’t etc.
Regards to all
ruffyp
Hi Ruffyp
So sorry you have been told you have mets. All of us mets ladies will know EXACTLY how you are feeling right now so please know you are not alone with this. You will be really scared and upset to be told your BC has spread. I don’t know what treatment is specific for lung mets but there will be ladies on here who do know and who have responded well to that treatment. Make sure you take someone with you to your appointment today and ask as many questions as you can. If you’re not happy with what you have been told then go back and ask more questions! You can also ask us anything once you know what’s going on - I found it the most useful place for information and advice last year when I was told I had bone mets. I also found I could cope better once I knew my treatment plan. I have not come to terms with my dx but I have to live with it now. Having said that I am no different to before I knew I had mets and continue my life to the full. I have down ‘times’ rathe than whole days but I am lucky not to be suffering with either side effects of chemo or my spread at the moment. It will take a while to come to terms with your dx and depends on how you deal with things generally. I hope you get some good treatment options when you see your onc today and please come back on here to let us know how you got on and to ask us anything you need to. Good Luck and Take care
Nicky x
Hi RuffyP
I am sorry to read about your recent secondary diagnosis, I am sure your fellow forum members will continue to offer you support. I wanted to add some information and support ideas from BCC which you may also find helpful. We have published a booklet about secondary breast cancer in the lungs and also have a resource pack containing a DVD about living with a secondary diagnosis, the following links will take you to the order page:
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/10
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/131
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/2
BCC facilitate a therapeutic support group called SECA which you may also find helpful, the group meets on a regular basis in various areas, this leaflet includes further information and contact numbers:
breastcancercare.org.uk/upload/pdf/Seca_leaflet.pdf
Please also call our helpline for further support and information on 0808 800 6000 which is open Monday to Friday 9-5 and Sat 9-2.
Take care
Lucy
thank you so much for your promt reply. It really helps to know you are not on your own out there. I have always been very positive , but this seems to be beating me. It is good to know that Life becomes normal(?) again once we can get through stabilising treatment
Kind regards
Ruffyp
Hi ruffy,
I was diagnosed with bc and lung secondaries in april 2007, and wanted to let you know that once you have a treatment plan and have identified support, you will feel a bit more more in control. this forum is extremely knowledgeble and supportive, and i am sure some other women with lung mets will also post.
In terms of treatment, I have had herceptin from diagnosis, tamoxifen, now arimidex, and 5 cycles of cabecitopine last year-there are lots of different options, and despite some progression over the last 2 years, my quality of life is very good, and I do most of the things i want to.
Has somebody talked to you about disability living allowance, which you are entitled to. macmillan welfare rights advisors can be very helpful.
please let us know how you are geting on.
best wishes,
nicky
Hi,ruffyp,
I was dx with lung mets in April and know excactly how you feel.
At first I was traumatised but believe me when you get your treatment plan you will start to feel better.
I am on Capacetabine which I take orally and has very litle side effects for me.
There are many ladies on here that have had lung mets for a long time so they are my inspiration.
My life hasnt changed except that I am having lots more treats! I agree with Nicky I have "down times" rather than whole days and they dont last for more than a few minutes, also I have found that I can deal with it much better by telling only a couple of good friends and close family, no-one else knows so I can get on with my life.
I am going on my third holiday abroad since dx so life isn`t all that bad,
Chin up, Take care,
Love,
Janx
Hi ruffyp
Sorry to hear about your recent secondary dx. I have liver mets (diagnosed just over 2 years ago) so can’t advise particularly on lung mets. However as others have said, there are lots of very knowledgeable ladies on the forum and I am sure if you have any specific queries you’d find someone would have an answer!
The shock I think of the secondary dx is awful but that shock does wear off and you do find some new kind of normality. Until you have started treatment etc though it is really difficult - I certainly find it so much easier once I know what the treatment plan is. It is always a rollercoaster though.
Personally I have found it helpful to try and plan things to look forward to on a regular basis. Doesn’t have to be anything particularly special - a walk, coffee with a friend, concert, watching a film - just something that you know you are going to enjoy and is in the diary within the next week or so. Otherwise it just seems to be a cycle of medical appointments and work.
Let us know how you are going.
Kay xx
Hi ruffyip
I am really sorry to hear about your secondary dx. I know what a shock it is. I was dx with secondaries to my lungs. liver and lymph glands at the same time as primary in march 2007.
I had mets in the pleural cavity in my lungs. I have since had fluid drained from both my lungs and have I have managed to live a reasonably normal life. ( Although the new normal isn’t the same as the old) I now have mets inside my lungs in the lymph system but this has been kept under control and I am able to do quite a lot of things and feel reasonably well.
I originally had 6 FEC and have just finished 6 Taxotere
Where exactly are your mets in your lungs?
If you want to ask any more please ask and don’t feel alone we are all here if you need us
love Caroline
Dear ruffyp
I am so sorry to read you have been diagnosed with secondaries, it is utterly terrifying. I was original dx in March 07 with primary, with incurable regional recurrance to neck and chest lymph nodes in Dec 08.
Life will reach a new stability for you once you have treatment plan, and you learn all you can about what is happening, fear of the unknown is the worst part I feel.
You will get stronger mentally, you may come to terms with your diagnoses, you may not, but you WILL cope with living with secondary cancer it’s not game over, don’t pass go.
I have been managing my chemo of gem / tax day 1, gem day 8 and repeat every 21 days since last December. It’s certainly not the most fun I have ever had, but I am living as near normal life I can, working full time in a pressured job I adore and getting out and doing the things I enjoy. I am confident I have lots of living left in me and I hope you feel that way too soon. When I first was diagnosed with the spread, someone wrote ‘I intend to live the rest of my life living, not the rest of my life dying’ and damnit I will.
Keep your chin up, cry when you want to, yell at the world when you want to, but in time we learn to cope with this s***y hand we have been dealt.
Nikki
Hi Ruffyp
I have got secondary in the lung too, have done for 2 years and living a pretty much normal life. I had 6 months of chemo and now have zoladex injections every month along with femara tablets. I don’t really have much in the way of side effects just a few hot flushes now and again. Hope you get on ok.
THANK YOU so much to all who have replied. I have cried for the first time since my dx, and not because I feel sorry for myself, but for all the kindness you have passed on to me. I start Taxotere next week via Portakath , so everything crossed and here is to the next holiday with my wonderful partner and very special children and grandson
Very best wishes to all
Ruffy p.
Hi Ruffy p
We must be one of the early birds on here 
same time as yesterday! I’m so glad you’ve had a good response to your original post - we really are a kind and supportive bunch on here, I should know I’m one of us - ha ha. I’m glad your treatment plan has been sorted, it certainly seems to help a lot of us (seeing these posts) once you know things are being done for you. I don’t have experience of Taxotere but if you need more info you can ask on this thread or post another on the chemotherapy topic. I did this last year when I had FEC (I’d not had chemo before) and it was very useful, again, to get info about how I’d feel etc. I also had a thread going with some lovely ladies who all started chemo around the same time and that helped alot when you’re going through the same ups and downs. Most of them had primaries so it was a mixed bunch Bc wise but really helped, we’re all still in touch a year on. Look after yourself during and after chemo. I hope it works really well for you and make sure your family look after you when you’re feeling low or fed up. Sorry we made you cry!
Nicky x