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Lung mets - please join in

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Re: Lung mets - please join in

Back in oncology assessment. Struggling to breathe without the oxygen lately. Suspect may need fluid drained again. Had blood tests and X-ray so waiting for results.
Rachel_0203300
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Re: Lung mets - please join in

Hello Gail
We have not exchanged messages before but I just wanted to get in touch. I hope the medical team are managing to help you feel more comfortable. With my very best wishes and thinking of you.
Rachelx
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Hi Gail, my thoughts are with you , I hope they can give you something to help with your breathing, what are they planning long term ? Are you having chemo ?
Louise x
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Re: Lung mets - please join in

Back in oncology assessment. Struggling to breathe without the oxygen lately. Suspect may need fluid drained again. Had blood tests and X-ray so waiting for results.
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Re: Lung mets - please join in

Sitting having premeds for starting weekly taxol. Onc popped up. Radiologist reviewed ct scan and confirms some evidence of lymphangitis but apparently slight enough to have missed it. Left lung seems clear but still have fluid in pleura that can't be easily drained as it forms in pockets after pleurodesis failed. Also skin lesions restrict room for lung to expand.
Have the oxygen at home now so should help when I'm discharged.
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Signed consent form today so hoping to start chemo this week. Looks like I can get oxygen at home but have health and safety issues around gas cooker to be sorted.
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After a debate onc put her foot down and have had about 1litre drained from right pleura. Seems to be helping. Had test to see if I can get oxygen home with me but should have had it done before fluid drained as might be breathing too well now. Agreed with onc to go on weekly taxol as thinks letrozole might take too long to work but going to combine letrozole with chemo unusually. Chemo unit is busy but hoping to get started quickly as an inpatient.
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I may be jumping the gun a bit here but following a pleurodesis to remove fluid impacting on lung I was not recovering as expected. Breathing got worse and was admitted to hospital overnight. From chest X-ray,lymphangitis has been suspected in the other lung, but have been waiting for ct scan to confirm. Virtually collapsed at onc reception and had to be put in wheelchair. Ct scan inconclusive and will have to be reviewed by radiologist next week, but given symptoms I'm pretty much expecting lymphangitis carcinoma to be likely diagnosis. Being kept in hospital on oxygen, oromorph steroids to help me breathe but can't walk far and get occasional panic attacks.
hotmomma
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Re: Lung mets - please join in

Thanks great news Debs. The BCN'S are lovely aren't they.So glad you had a good chat with her and that you are feeling a bit better today.Onwards and Upwards.
Good luck with your bone scans too Debs
Take Care
Franca
xxx

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Hi all, just to update, spoke to my BCN today for about an hour, she organised macmillan nurse to come and see me next tuesday and is sending me a load of leaflets. She is going to have a look at my notes and call me next week so she can answer any questions I have, so am feeling much more up beat today. Got my appointment for bonescan today too for next Thursday fingers crossed that will come back clear.
Hope you all doing ok
Debs xx
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Hi Franca,
Thanks for that was beginning to think that everyone else just deals with it. Will definately call BCN tomorrow get it off my chest. Hopefully can get back to my usual positive self dont like this limbo feeling.
Hi Saralouise
Must be hard not knowing if you have secondaries or not hopefully it is just scarring.
Debs
hotmomma
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Re: Lung mets - please join in

Hi Debs, I know exactly where you are coming from.I finished all active treatment in Dec 2010 so I'm quite a bit further on than you and thought that I'd get back to normal straight away.But it took a good 12mths before I even started to feel even a little bit better.I felt guilty for everything. For putting weight on during chemo and for being so fatigued after treatment that exercise was the last thing on my mind.I felt like a failure in everything I did and that I wasn't trying hard enough. I didn't feel elated once treatment was over and I felt guilty that I wasn't happy and angry that I wasn't being looked after by the medical profession anymore.I felt like I was in limbo.I just didn't feel like the person I was before I was diagnosed.
But it will get better,I promise you,but you mustn't sit back and do nothing, if you don't feel right. It hasn't been long since you were diagnosed,so don't be so hard on yourself.Good idea that you're phoning your BCN tomorrow.I think she will be the best person to talk to. Have a good chat with her and tell her exactly how you feel and about being neglected since being diagnosed with secondaries.Otherwise you will just bottle everything up and make yourself more ill.
Make sure you do phone her tomorrow and hopefully she can give you peace of mind.
Good Luck and Take Care Debs,
Franca
xxx

sarahlousie
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Re: Lung mets - please join in

Hi all, I did post on this thread ages ago but as its cropped up again I thought I drop you all a line. I was dx back in Feb 2011 with a large 6.5 primary IDC initially then 2 weeks later suspected lung mets. I say suspected because they were so tiny they couldn't biopsy them to confirm that it was lung mets. Since June 2011 they have stayed the same no change stable condition and like some of you have mentioned one Onc casually mentioned that it could be scar tissue!!! of course this has now taken precedence over thinking its cancer on my lungs and as far as I am concerned its only scar tissue and thats what I'm sticking to. However, because we can't 100% confirm that its only scar tissue we have to treat it as if it was something more sinister so I am on Herceptin forever and Tamoxifen for at least 5 years (2 down and counting!!) other than having some SE from these two I am ok, and am without any symptoms. I kind of live in limbo land not the same as I was before all of this and in a sort of cancer twillight zone!! I have until recently been having regular CT scans but due to the amount of radiation they've pumped into me over the past 2 years they have decided to stop the scans for the moment and just give me yearly ones, this is a bit nerve racking but I'm getting used to it gradually. Have to be honest with you all I beleive the NHS is generally not in a very good way at the moment and for the first time since all this crap started Ive had a few problems with getting my herceptin, apparently there was noone available at my hospital to sign off my herceptin so I've had to wait an extra few days for it also I've mentioned to my GP that the hospital seem to be a bit crap ie: waiting for 3 hours for a 5 min onc appt!!! GP told me "its only going to get worse" don't quite now what he means by this but it is worrying especially when you have secondary's or possilbe seconary's.
Sending you all love and light
Sarahlouisex
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Hi Franca,
Had a winge to my gp yesterday she was going to ask the local Macmillan nurse to ring me but not heard anything yet. Will ring my BCN tomorrow, but always feel like am being a pain and am not great on the phone. Feel like am just meant to get on with it but cant seem to concentrate on anything at the moment is like am not in control of my life and have failed at getting better - if that makes any sense.
Debs x
hotmomma
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Re: Lung mets - please join in

Hiya Debs, Thank-you for your reply.I have contacted my BCN and she has confirmed that a lump was spotted on my lung and will be contacting my surgeon to see what he wants to do next. I have been feeling breathless, but I think that it's because I have been having daily nosebleeds for the past 7wks, which have made me anaemic. My nurse is going to contact me once she has spoken to my surgeon.
Doesn't sound like you are being treated very well at the moment Debs.Is there anyone you can contact to have a word with?
Take Care,
Franca
xxx

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Hi Ladies,
Pinkylou, am told it is too soon for any more chemo as I only finished the last lot in March, doesnt seem like it did much unless the mets were there before, how are you getting on with the chemo is it working - hope you dont have too many side effects, I felt awful most of the time during my chemo.
Bertie, thanks for your post nice to hear that the Letrozole is working for you fingers crossed it will work for me too.
Hotmommo, sounds like someone forgot about the lung problem think I would be a bit annoyed that they have left it so long, but if you have an appointment go and get it sorted, my mets got found because I was short of breath half way through my primary treatment.
Dont know about anyone elses experience but when had primary diagnosis everyone seemed to be giving me information and sorting treatments etc and I seemed to have loads of medical support. Now I have secondaries I feel like they just gave me a prescription for hormone treatment and a referral for a bone scan and the support is non existant.
Sorry to be moaning hope you are all fine
Debs x
hotmomma
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Re: Lung mets - please join in

I have just received a referral letter from my GP for something unrelated to my cancer and it states that when I was diagnosed with BC in 2010 that my CT scan showed a possible Interlobular Node on my right lung and would be referred to a Lung Multidisciplinary Team once I had finished my BC treatment.That was 3yrs ago now and I haven't been referred to any Lung Specialist regarding this. Can any of you ladies enlighten me as to what this is and what I should do about it Thank-you xxx

bertie
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Hi all, as you will see I have posted oh here some time ago. I was originally diagnosed in 2006 with breast cancer, grade 2 stage 2, er positive with vascular invasion, after lumpectomy I had 6 FEC chemo, 25 rads then tamoxifen for 3 years. I developed a cough in 2009 that wouldn't go also a bit breathless, had x ray and CT scan and tumours found in lung, had biopsy and confirmed breast cancer mets. Was put on Letrozole and since then 3 and a half years have remained stable. Not sure if that helps any of you, they did sait tumours could have been there a while. Hope you all get on ok, do let us know.
Love Marina x

hotmomma
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Re: Lung mets - please join in

I have just received a referral letter from my GP for something unrelated to my cancer and it states that when I was diagnosed with BC in 2010 that my CT scan showed a possible Interlobular Node on my right lung and would be referred to a Lung Multidisciplinary Team once I had finished my BC treatment.That was 3yrs ago now and I haven't been referred to any Lung Specialist regarding this. Can any of you ladies enlighten me as to what this is and what I should do about it
Thank-you
xxx

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Hi debs , no think no one has posted since thaT date. No many people seem to post very much. I have lung mets , been on various chemos for a year. I had breast cancer in 2008 , it came back in breast last ywith and lung mets.
hope you are ook louise
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Hi, am wondering why this thread finishes march 2013, I was dx sept 2012 with G3 Dcis had lumpectomy and sentinal node biopsy - nodes clear but poss vascular invasion. so had 4 x TC and 15 x rads. Half way through rads mentioned was a bit short of breath and after xray and ct scan found secondaries on my lung. Have started me on Letrozole and sending me for bone scan as pain in hip and leg. Would appreciate talking to people in similar situation. Debs
lucinda
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Re: Lung mets - please join in

Hi Jan,
I was told they were scar tissue in August 2009 and nothing has happened to them since.I also had spread to my lymph nodes and they did not respond to hormone therapy.The fact that your lump is not growing is good news even though you obviously want it to shrink.Good luck with FEC and hope it works.

Lynn x

Janijan
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Re: Lung mets - please join in

Hi Milly, thanks for the encouragement. It is hormone responsive , but they are saying if they disappear then I will be on herceptin injections for life I think in addition to tamoxifen.
As I'm only 2 months into the dx it's all a lot o take in and learn a whole new language.n it's spread and grown fast as its in my lymph nodes and i had a clear routine mammogram 6 months before.
also I'm about to have FEC 3 and my lump isn't reducing in size at all although its stopped growing. Depressing really!
Janijan
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Re: Lung mets - please join in

Hi, Lucinda, thanks for replying. it just seems hit and miss to say that if they don't go they're scar tissue, when I've never had any serions lung issues
did yours eventually develop into anything or are thy just sitting there as scar tissue still?
thanks,
jan
millykins01
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Re: Lung mets - please join in

Sadly with a lot of all of this it really is just a wait & see situation. You have had the Ct scan & at least that has picked up the problem but realistically they don't often biopsy lung stuff anyway as it is assumed it would be from the BC - lets just hope the chemo blasts them away as it can & you will get another scan at the end of chemo to check what is happening. we would all love definitive answers but unfortunately we can't always get them. Sorry you are having to join in here & that you may have spread even at first diagnosis but there is a lot that can be done - are you hormone positive as this means you would also get hormone treatment after chemo to help halt growth too.

lucinda
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Re: Lung mets - please join in

Hi jan I had something similar when first dx but following chemo they decided they were probably not mets but scar tissue.It seems both show up in a similar way on scans and as they cannot biopsy it is difficult to be certain.Hope chemo goes well.

L xx

Janijan
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Re: Lung mets - please join in

Hi ladies, I haven't posted before, but I have a vague diagnosis of lung mets.
I was diagnosed with bc in January, stage 1 behaving as stage 3, in lymph nodes, and am having 3 FEC-T (3rd next week) and 3 taxoterre. Mastectomy and radiotherapy to follow.
My ct scan has shown 7 nodules on lungs which may be mets but they can't biopsy, so if they disappear with chemo, they were mets and if not, then they aren't.
This seems so vague, has anyone heard of this before? Is there anything I should be dashing for?
thanks jan
swanie
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Hi I don't think I have posted on this thread before. I was wondering if you could give some advice/set my mind at reast. I have mets in the spine and a couple of small tumours in the left lung. Fliud has started to accumulate in a small way. I am planning to fly to Barcelona on 1/3/13 but my GP wants to check my lung before I go in case there is more fluid build up. To makes matters worse I have a stonking cold and feel worried that it may go to my chest. Have any of you flown and what are the consequences of flying if you do have fluid on the lung? I really need this break.
thank you for sharing your experience
Jacqui.

sarah66
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Re: Lung mets - please join in

hi Louise i don't know why it was changed meeing up with ward manager of chemo suite next thurs so have questions to ask , i don't know when they will scan i think the consultant said after 12 treatments but i would rather they do it sooner to see if it is working, Willl ask about chest xray too. Also want to see consultant too
sorry to hear you have more mets what is the plan now?
Best wishes
Sarah x

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Hi Sara , why have they changed it ? I had taxol and avastin weekly for12 weeks , it didn't work for me , if did make some headway for the first 8 , they had two more mets come up, so I was taken off straight away. are they scanning you at the end , I hit a chest x ray every 3 weeks when I was on that ?
Louise
sarah66
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Hi all , i have started taxol and avastin , was told i was having it weekly over 12 weeks, now i find i am having it 3 weeks then a rest week ? also having avastin every few weeks . Need to meet up with chemo team and clarify as they do not seem to have it clarified. I was told i would be scanned at the end of chemo to see what is happening. Not too bad so far , sore nose, heartburn nasty mouth and taste buds gone !!! even chocolate doens,nt taste nice !!!!

Regards
Sarah 66x

scottishlass
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Thanks Julie, just spoke to her on facebook and glad she is well and is just not posting on here. (Sigh of relief) Hugs Val

JulieD
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Just posted on the brain mets thread SL - Alesta is ok,I know through FB, she doesn't use BCC site much since 'the revamp'. Julie x
scottishlass
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Am now concerned that we have not had any posts from Alesta 29. Anyone heard or been in contact from her? I am fearing the worst. Va

scottishlass
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I have placed a message on the "in memory" thread whch can be found on the left hand column about the archives.
I was informed by another poster that she thought that our "sadieL" had passed away and that there was a notice in Sadie's local newspaper. i contacted friends on FB who may have known her and it does seem that our lovely Sadie has passed away.
Sadie was very upbeat and posted regularly on this thread. I had sent her a Pm weeks and weeks ago but she did not reply. I thought perhaps she had just taken a step back for a while.
If anyone on here knows/knew Sadie perhaos you can confirm if this is true. Her notice was in the Worcester newspaper so it seem that it may well be "our" Sadie. My condoloncies go to her family and friends at this sad time. You have been missed Sadie.

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Good news lollipop , let me know how your sCan goes. I had taxol then cap they both worked for periods. Just starting epiribicen , the red devil . Weekly so not as bad as 3 weekly.

Louise
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Hi ladies joined this site 2011, dx with ibc sept 2010 had fec and taxotere then mx and the 15 rads after x months later had a reccurance in the skin had a op to remove the nodules then three months later had another reccurance in the skin again had ct scan but this time found lung mets so started taxol for six months another ct and it was all clear also was having herceptin nOw currently on capcitabine with tykerb instead of herceptin becoz of heart issuesn but must say taxol does work and have done really well no side affects with the taxol or cApecitabine. have got a scan in feb to see if the cap is working .
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Re: Lung mets - please join in

Hi ladies joined this site 2011, dx with ibc sept 2010 had fec and taxotere then mx and the 15 rads after x months later had a reccurance in the skin had a op to remove the nodules then three months later had another reccurance in the skin again had ct scan but this time found lung mets so started taxol for six months another ct and it was all clear also was having herceptin nOw currently on capcitabine with tykerb instead of herceptin becoz of heart issuesn but must say taxol does work and have done really well no side affects with the taxol or cApecitabine. have got a scan in feb to see if the cap is working .
sarah66
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Hi i am starting chemo on 27th Dec , seen oncologist this morning. Taxol and Avastin (weekly Taxol for 12 weeks. I think it was fortnightly Avastin, cannot remember now) Discussed the cold cap anyone tried this on this regime ?? does it work? also have aletter for a wig. This is my second trip down this road, had BC in Jan 2008 had 6 x FEC WLE and rads. Got mastectomy to look forward to at the end of this , unfortunately i also have a small lung nodule too. So hopefully chemo will blast that too. Any tips of advice welcome. At least i can enjoy my xmas lunch , hubby glad he will not have to do the cooking!!!!

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Hi Sarah , u will feel better with a plan. I have been on taxol and then xeloda, seeing oncologist on Monday. I have alot of pain in my armpit , I really want that out !!!!!


louise
sarah66
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Hi see the oncologist on monday for treratment plan , presume i will need my old wig, i did keep it , i don't know why ! Feeling a bit nervous now it seems more real now i am starting treatment.
Best wishes to all
Sarah 66

sarah66
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Hi Pinklou that is spooky to have such similar situations , what chemo have you been put on ?? hopefully see dr soon been nagging bc nurse today !!!
take care
Sarah66
x

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hiYou hi Sarah your situation is exactly the same as mine. Feb 2008 lumpectomy, Fec and rads , then this year had annual MRI of breasts picked up reoccurrence in scar line. Then discussed mast then discovered lung mets. I have done 2 chemos so far , just about to start third , feeling not great at moMent. Let me know how you get on ?
sarah66
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Re: Lung mets - please join in

Hi i am being treated for recurrance and lung mets 1cm apparently by heart valves so have decided not to biopsy as difficult to reach etc and due to my history high liklihood of mets rather than new lung. I had primary diagnosis in jan 2008 , chemo, 6 x FEC WLE and rads,TNBC no node involement, now it is back again in same area. Advised to have mastectomy but after scans showed lung nodule had to wait and see lung dr.

Now decided to treat as mets so need chemo so now nagging my BC nurse to find out what is happening have been passed from pillar to post for weeks, i know it is procedure but very fed up now and want treatment to start, sooner i start the sooner it finishes!!!
Hopefully next appoint will be to see oncologist!!

Anyone had similar and what chemo have you had and what side effects?? i realise this is treatable but not curable so i suppose it depends on the response to treatment whether i am just monitored or will need further treatment in the future. Probably best to take one day at a time .
Best wishes
Sarah66

bertie
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Re: Lung mets - please join in

Hi Rozita, I have lung mets, mine did start with a cough I had had for some time but was getting worse. I saw my GP who sent me for xray and shadow showed up so was referred back to the Marsden for CT scan, I then had a ct guided biopsy which confirmed it was breast cancer met. That was over 3 years ago and since then it has remained stable, I was put on Letrozole which is still doing its job. Obviously your problem is very different and could very well not be a met, it could be a nasty infection which has affected both lungs. I would have a chat with your breast care nurse or oncologist while you are waiting for CT results to try and put your mind at rest, I wish lots of luck with your results, do let us know the results and let me know if I can be of any help. Thinking of you. Marina xx

bertie
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Hi Rozita, I have lung mets, mine did start with a cough I had had for some time but was getting worse. I saw my GP who sent me for xray and shadow showed up so was referred back to the Marsden for CT scan, I then had a ct guided biopsy which confirmed it was breast cancer met. That was over 3 years ago and since then it has remained stable, I was put on Letrozole which is still doing its job. Obviously your problem is very different and could very well not be a met, it could be a nasty infection which has affected both lungs. I would have a chat with your breast care nurse or oncologist while you are waiting for CT results to try and put your mind at rest, I wish lots of luck with your results, do let us know the results and let me know if I can be of any help. Thinking of you. Marina xx

Janet_BCC
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Hi rozita

I'm so sorry to hear you are so worried. Why not give our helpline a call to talk things over. They'll be able to give you lots of information and support. They will be open at 9. (9-5 on weekdays and 10-2 on Saturdays) The number is 0808 800 6000.

Very best wishes

Janet

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rozita
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Hi all I hope you can help nearly 3 years since breast cancer diagnosis but have had a cough since may last weekend rushed into hospital with suspected blood clot They said it wasn't a clot but had mild atelactesis bilateral which I beleve is small lung collapse both sides. hospital so busy sent me home havin breathlessness and pains in back went t gp today and got antibiotics they said th ct hmayn't been fully reported on yet. Will I hear anything ? Could this b the start of mets?should I push for biopsy ? Should I ring my breast cater nurse ? Worried! Has anyone else gone thru something similar xxx rozita

izzy63
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Thank you once again Lemongrove for all the info. I find all the different treatments so confusing at times. You wouldnt think I worked for the NHS. The forum is really good for searching out the new treatments available. There is always someone on here that can help out.
Izzy63

Lemongrove
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Izzy, yes I did have a biopsy carried out - they biopsied an infected node in my chest. It was ultrasound guided, and they just applied a local anaesthetic to the skin. Apart from a sense of pushing I didn't feel anything.
I have bone mets and wouldn't be too keen on having those biopsied (I'm a bit of a wimp), but I think most people with secondary cancer have one or two effected nodes that can be biopsied quite easily.