I was diagnosed with Lung Mets in April 2007, i am still really struggling to come to terms with the diagnosis, although i think others around me think i’m doing just fine when i’m not. I try to talk to my family but i end up upsetting them and then i feel worse.
I just feel all doom and gloom just lately and cant seem to snap out of it, i have felt quite well so far since diagnosis and my mind just wonders and i am left wondering how much longer i have left feeling well before i get worse… feel like i’m living on the edge all the time and cant relax…
can anyone share with me some positive stories of thier experiences with Lung mets, how you cope, do you get any pain? I feel too young to go through any of this, i’m only 34, all my friends are all happily married with young children, where as my marriage didnt survive and i’m on my own.
I know there are other people worse off then me but i just need some one to give me a bit of a kick up the backside and stop me feeling sorry for myself…
Hi Jakki
I was diagnosed with lung mets in Oct 2006 and had FEC which seemed to stabilise things and was also on Arimidex. The manifestation of my metastises is in the pleural effusion on my left lung . Last year my markers were up andI have just had Vinorelbine but that didn’t seem to do anything for the pleural effusion which had all but collapsed my lung. I had it drained and a talc Pleuodesis carried out last week, and am due back at hospital tomorrow to have the drain out and check to see if the lung has re expanded at all.
I’m not sure how positive all this is but I have largely carried on with my life, until very recently I didn’t really have any symptons.I still work full time and was running until my lung objected ! also going skiing in 2 weeks !
Wishing yoy well
Kathryn
I have posted on behalf of Terry
Kind regards
Katie
Hi Jakki,
My wife ( 45 ) had lung mets ( along with bone and liver ) after 11 sessions of Taxotere and Xeloda for a year, the lung mets had gone completely. Her liver and bone mets are still there but not the lung mets.
Jakki
there’s nothing wrong with feeling sorry for yourself because you’ve been dealt the really rough side of the bc card plus everything else you’ve had going on. Allow yourself to wallow and talk to the nurse here on site or a counsellor or your bcn. You shouldn’t have to be ‘living a lie’ over how you feel.
From what my oncs tell me, it seems to depend on where the lung tumours are and the type and how responsive they are to treatment to say what sort of prognosis or what is gooing to happen.
I think you need to talk this over with your onc and say what you are worried about. eg for me, it is the scenario that Kathryn above is going through as my father developed a lot of fluid on his lungs due to secondaries and one of my fiends at chemo keeps having to have fluid drained off but she is early 60s and was diagnosed with lung secondaries 6 years ago and told then she might live only a few months!!
I’m unusual - as ever - in that I have it in my lymph system in my lungs (lymphagitis) and so is everywhere and that caused shortness of breath but was really responsive to chemo and steroids. Now I’ve developed a massive tumour that basically goes from the right side of my heart across the front of my chest , pushing on my oesophagus and upto the top of my left side of my heart and is also closing off my right sided air entry but that has developed over the last year at least.Saying that I an slightly short of breath and only notice my fast breathing rate when I look at camrecordings or try to rush up stairs.
Jakki - I know like me, we want to know how long we’ve got and what is going to happen next but I don’t think anyone can tell us cos it all depends on what our bc decides to do - react or no to chemo or suddenly develop elsewhere.
Sorry - I’m sure I’ve not helped you at all but as we all react individually and our cancers all act differently, I don’t think it matters if someone tells you they lived with lung mets for 10 months or 10 days as our bodies and cancer is all different.
From what you’ve written, i think you need to talk to your onc and maybe consider some counselling or do you see a Mac Nurse. Mine has been invaluable.
Love Kate
Dont feel too sad…Im 34 and see all my friends with young families and i couldn have kids cos of bc so i know how you feel… but i just wanted to say its perfectly normal to feel down at times, like the others have said we all feel this way sometimes! I too got dx with lung mets in nov 07, after original bc in 03, then recurrance in chest bone in '05, then local recurrance in april '07 then in both lungs and spine in nov 07! so had pretty rough ride too but you kind of get used to it - only had arimedex and ibandronate for this last dx…but am still working 4 days a week and really happy and some days i dont even remember im ill!!! which is great.
I think my advice is to try enjoy yourself, take up a new hobby or arrange to see your friends more, just try and forget bc (i know thats hard to) but try to be happy - as kate says noone knows how long we’ve got! but that can mean to anyone not just us bc sufferers! who knows (i hope i dont) but i could be run over by a bus today! and still living with bc…bc is a disease that is becoming increasingly better with prognosis and longer survival…although i have been battling bc for years i never give up, and i wont, yes like you i have my down days and they can last for weeks sometimes when i feel the world is all out to get me! but the way i look at it is there are lots of treatments out there and you do read these miraculous stories of people who survive for an awful long time - did you see on sky news recently a lady is still goin 34 years on, and i think she has bc in lungs, liver and bones??? i think i cant quite remember! (perhaps google ‘34 years with breast cancer’ it may pick the extract up?) . So you never know what lies ahead…
I appreciate its hard to speak to family, at my low times noone (well apart from one of my bestest friends who I met on chemo 5 years ago) seems to quite understand how i feel so I can appreciate its hard to explain to your family without upsetting them, as kate says do you have any local bc groups or a bc nurse you can turn too? if not email this forum site, theres a lot of people who care on this site…
anyway, please dont feel down too much you have so much to live for and so much to give your family! take care xxx
Thank you so much for the replies you have given me… i feel so much better knowing that i’m not alone and above all its given me some hope and a bit of a lift…
Kate - i know your right in what you say… you can hear about everyones elses prognosis/stories but we are all different… i think i cling on the fact that i feel so alone in all this… the lady you know 6 years on with lung mets is amazing…
Rachel - that story of the lady - 34 years on… well… i hope to god that is all of us… what a true inspiration she is… i notice she said she saw a faith healer… anyone else seen one of these?? Thanks for your email address… you sound so upbeat about things and i expect that the moderator will probably delete your address as they dont allow it…
I am currently waiting for my CT scan results which i amtold i should have next week to see if my current treatment is working and to check if i have any further spread… i guess the pressure of this is getting to me too.
Thanks again… keep the stories coming… there is a distinct lack of support for us younger ones with secondaries and its the loneliest feeling in the world…
Hello
I had lung mets which was also found from a pleural effusion and I too had the talc stuff put in. This was followed by a course of fec. This was nearly a year ago to the day and I am feeling 90% better now and can do loads of my normal things. The last scan didn’t show the mets on my lungs only the ones on my liver were still there.
So there is hope so don’t give up. You will start to feel better soon I’m sure
I have just read your thread. My Mum has mets to the lung and she also has Lymphangitis, is this what you have?
I’m really worried as I have asked the onc how long and he has told me about 2 yrs.
Is it Lymphangitis that you have? My Mum is having chemo at the moment but I’m very worries, she had to have a transfusion 2 weeks ago and her white cells are down again at the moment. She has had a pleural effusion als.
Holly01
Sorry to hear about your mum.
Yes, I was diagnosed with lymphangitis in Sept 06 but had been breathless since more or less diagnosis (April 05) but nothing showed on Ct scan until then. I was told my life expectancy was about 3 months initially as it was so widespread. Now 18 months later and on my 3rd chemo, my lymphangitis is still there but stable but have developed a whopping solid tumour and that is the concern because it is squashing and surrounds so much of my heart and oesophagus. I’m on my last option of chemo now and hoping that they will let me have recycled chemo if my heart can take it. So I suppose my life expectancy would be about 2 yrs since diagnosis but mine is particulary aggressive and I’m now 46. If your mum is older then it might grow more slowly and give you all more time and I don’t know what chemo options your mum has left or if hormonal treatments or herceptin are relevant to your mum which again would give you more time.
I had a fantastic response to vineralbine but once I’d finished it, I was only off chemo 8 weeks before I became too breathless again and needed more chemo.
Jane Tomlinson had lymphangitis I was told and she lived for 6 years.
It is all a bit of a lottery about what chemos work etc and I find my oncs tend to give me the bleakest outlook.
Wishing that the chemo works well for your mum.
Love kate
The lady (she’s now 40) who I see when I go for treatment has had Lung mets since 2004… also bone mets… PR+ /ER- HER2 +… She has had alot of different treatments… said the Xeloda worked quite well for while… also vinorelbrine… now on the Lapatinib/ Xeloda extended trial … has shrunk her lung mets but not her bone… Anyway… a rough ride but definitely coping & for ever bouncy and positive… & definitely still here… think 7 years since primary. This has definitely given me hope that our prognosis is not written in stone & I know that statistics are from the past and we are now in new terratory with the new developments.
On being alone & the relationship front, I know how you feel… I’ve been going through the thoughts of how I’m meant to have a relationship with someone new … why should we be doubly hurt by being denied a normal relationship… Totally crap… Perhaps there are ladies out there who can advise us on this as I’m at a loss whether to hide the cancer progosis for a while or be upfront with it… .Oh the lady I mentioned she has started seeing someone new since secondary diagnosis but he knew her before so slightly different … but always hope. xx Jane
My Mum first had bc when she was 42, she had a lumpectomy.They gave her radio treatment and she was on Tamoxifen. It then came back 16 yrs later in the same breast and she had to have that one off. They did what’s called a flap, they took muscle from her back and rebuilt it a little. Then 5 yrs later she had 12 nodes removed, she also has lymphodema.
5 yrs later it went to her lung so they tried her on Faslodex, it didn’t work!
She had plerodesis and I think they thought this would stop the breathlessnes but it didn’t so they have now put her on ec chemo 6 cycles.
She is in hospital at the moment her white cells are down and they think she has a chest infection. I can’t stand to see her like this she can hardly walk anywhere without being breathless. I just hope she starts to feel better after the chemo.