Rachy, sorry to hear you have had your fears confirmed.....its such a blow isnt it even if you're half expecting it. We have all been in that dark place many times but try and rest, give yourself time to adjust and by then hopefully a treatment plan will be underway. Easier said than done but stay strong.Let s know how things go. x
So sorry you've had your fears confirmed and it must be frustrating that the experts seem baffled. I don't really understand why they are looking for a primary though? I had a 12 year gap before SBC dx so my original tumour was well and truly gone!
Hope they can sort you out with a treatment plan soon. Be very kind to yourself in the meantime and try to take it one day at a time.
Good luck Rachy!
Stresshead I have not had carboplatin. I'm going to Google it to see what I find. FF
Hi funny face...this isnt the first time i have ben told i can have so many cycles and others have said differently.Apparently its due to the toxicity (my paltelets were so low this time i had to have a redced dose) and he seems keen to let me have a rest from chemo's (althogh i feel ok at the moment). This worries me because if the disease spreads its then too late...i would have thought prevention was better than 'cure' as they say.... Have you or anyone else been on carboplatin indefinitely?
I have noted down the treatments you have had as there are a few i've not visited yet.
I am seeing another onc in london on wednesday so will be asking the questions you've raised.
Stresshead, Why can you only have one more round of chemo? My oncologist gives me each chemo until it stops working of unless I'm having a problem with it. This is my list of treatments Lupton injections 4 months (didnt work at all ), Abraxane/avastin combo 6 months (was beating me up so we stopped it but can return to it bc it was still working when we stopped, vinorelbine (navelbine) 5+ years, xeloda (capacitabine) 2+ years, gemcitabine 10 months (toxic reaction), currently letrozole and ibrance (palbociclib) so far 11 months. What treatment are you on?
Rachy, That was my goal, to give you some hope! My oncologist had told me I had about 2 years. Glad I v e proved him wrong. I did have 2 set backs. Back in 2012 I had to have radiation to she h k a tumor that was closing off the brohncus to my right lung. The upper and middle lobe had collapsed in my right lung. I landed in the hospital and ended up in O2! I came home and used the incentive spirometer about 10x a day. I was told by the pulmonologist that it wouldn't help. A respiratory therapists said it could and I had read on line that it could. After about 2 months my lung reinflated and I was able to come off O2! My onc later told me he had thought that was the end for me. Then last summer I had toxic reaction to gemcitabine and needed O2 again. That healed and I giot rid of O2 again. I also developed a condition called ground glass opacity, lungs look like they have glass all through them. This has a poor prognosis, well my current chemo cleared if up. So, don't give up!
Hi rachy, sorry you have had to join us.
I apparently dont have lung mets but have them in the pleura (outside lining), which i am told is different??
I had 2 pleural effusions and could barely breathe. Am much better at the moment bt not sure if its the 'lung' treatment working or the chemo. I can only have one more cycle so am getting a bit scared.
I only went 2 1/2 yrs between primary and secondary and i really dont know which is worse....i just wish none of us had to go throough it. Take on board all the advice given by these wonderul ladies and nver give up hope. Rant and rave on here as much as you like....we all ubnderstand.
Funnyface...thanks for telling us about your 'time span'...you give us all hope.xx
Rachey, I went 10 years before my lung mets were discovered. I have had my lung mets 10 1/2 years. I hope you get many good years too! FF
Sorry to hear what you are going through.
I was in a similar position last October, albeit with a 12 year gap between primary and secondaries. Please believe me when I say it will get a bit easier as time goes on. In the meantime, as Carolyn says, everyone on the forum will support you.
Things I wish I'd known at the start:
* It's not curable but you don't have to start planning your funeral yet! There are ladies on here who have lived with SBC for years and the treatments are getting better
* you will feel much more in control when you've seen the onc and got a treatment plan
* some hospitals have specialist SBC Nurses - worth asking if yours has one
In terms of where I am now, I'm currently on hormone treatment and it's keeping the cancer at bay. The largest nodules in my lungs have shrunk and I'm no longer coughing or breathless. I would have found that hard to believe nine months ago.
Hang in there!
Hi, I had primary breast cancer in 2008 grade 3 stage 2 IDC and had chemo, rads and hormone treatment. I recently had a scan for an unrelated condition and lung lesions were found. After a CT scan, multiply lung nodules were discovered. An urgent oncology appointment has been sent to me and my gp is pretty sure it is secondaries. I visited her today and she said cancer is the number one cause due to the look of the ct scan. I am devastated and know the onc will confirm this. My husband knows about the possibility of cancer but I now have to tell him that this disease will eventually kill me and cannot be cured. I hope treatment may give me as much time as possible. I still cannot get my head round this and feel desperate.