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Lung mets - please join in

desperado
Member

Re: Lung mets - please join in

I have just completed five of eight treatments of docetaxel for nodules on my lungs.  I had 3 nodules and two have responded to the treatment, but one has grown.  I have been told by the Oncologist that it may still respond, but if it does not they will do a biopsy on it.  They are waiting to see if it responds. When I asked the Oncologist if it could be another type of cancer, she said yes it could be. I asked so what kind of cancer and she replied that it could be lung cancer.  Am feeling very anxious, has anyone else experienced anything like this?  I apologise if this is the wrong site to post this request, am new to the Forum.

 

formymum
Member

Re: Lung mets - please join in

Hi, thanks for your reply. It's really encouraging to hear you've been on tamoxifen for 3 years.. when you first hear the diagnosis and read things on the internet you fear the worst but the more I read I realise it can be a condition that people live with for years. My mum has had bone scan and there are a couple of spots on her skull but apparently that is expected and apart from a little on her sternum the rest is clear so i think that is good news.

She seems well on the medication up to now so fingers x'd things will carry on going well on the tamoxifen.

I am also encouraged that where we live there is no postcode lottery for treatment and my mum has been told that whatever is available she can have if it's needed.

Does anyone else have experience of not being able to get the treatment they need?

 

Love to everyone x

sarahlousie
Member

Re: Lung mets - please join in

Hello formymum the treatment you talk about is Tamoxifen is a very old tried and tested one I had multiple lung Mets on both lungs which after 3 years on tamoxifen had disappeared completely they should be offering your mum herceptin as well if she is her2+ which you can have as a sub cut injection rather than by drip. My cancer was very aggressive so I did chemo surgery and rads. Hope this helps xxx
formymum
Member

Re: Lung mets - please join in

Hi everyone, well my mum has finally seen consulatant today for her treatment plan. Doc said it is very slow growing and has put her on tamoxifen for a period of 3 months initially and possibly some injection of bone scan shows anything. They will then re-assess and do scans etc.. is this normal? 

My mum is encouraged by this, as we all are.. does anyone else have any experience on this treatment and how did they go on it?

This is all such a roller coaster, good days and bad.

 

Best wishes to everyone x

myplace
Member

Re: Lung mets - please join in

Hi Edwina

Just read your post, Im slightly different in that had initial primary cancer 4 years ago and just been diagnosed secondary lung mets.  Like you I have been on Letrozole till it stopped working.  Had my first chemo 2 weeks ago.  But like you, I have had the throat clearing sensation for quite some time.  Not sure if it is the cancer or not, have been ignoring it up until the diagnosis.  A question for the onc when I see her next.

Very best wishes

Sandi

 

LemonDrizzle
Member

Re: Lung mets - please join in

No symptoms for me either, so hoping it stays like this! x
2catlady
Member

Re: Lung mets - please join in

Hi,I get no symptoms from my lung mets either. No cough or anything.
Hugs, Helen xx
dennymac
Member

Re: Lung mets - please join in

Hey! I've not had any symptoms from my lung mets and I was diagnosed in January at same time as primary. I did have a cough at the time but I was getting over a bad chest infection I picked up over Xmas. I have the odd twinge in my chest but I dunno if that's muscle issues or me imagining it. Other people I have talked to have said they have minimal or no symptoms from their lung mets xx
edwina64
Member

Re: Lung mets - please join in

Hi everyone, I was diagnosed  with secondary breast cancer 19 months ago breast and bone cancer at initial  diagnosis.  At first I was on letrozole up to last dec which was great but it stopped  working. Since then have been on e/e combo though only 3/4 dose due to se. I had results of scan and onc said I now have mets to my lungs but quite small. She called this stable. I have a sort of tickle in my throat and chest and I wondered if this is the cancer effecting me, has anyone  else expierenced this. It makes me clear my throat  alot not actual cough. Sorry to ask but worrying alot as not sure I agree with 'stable ' if now in the lungs. Have to have another scan in 3 months, long time to worry!

dennymac
Member

Re: Lung mets - please join in

I'm going ok thanks! Had my midway ct and all the tumours have shrunk but apparently I have a little fluid on one lung but they are just gonna keep an eye on it! Due chemo #5 tomorrow! Legs and ankles have swollen and are heavy but it's all doable! I'm told the effects are cumulative so makes sense for the legs to be trouble now! One more after tomorrow then another ct! Xx
KAM80
Member

Re: Lung mets - please join in

 
myplace
Member

Re: Lung mets - please join in

Hi dennimac

 

first chemo not too bad, got some constipation, but Senokot helps, very tired Sunday, but bounced back today.  See what tomorrow brings.

Next chemo on 15 May, Im calling them my chemo refill days.

Anyway Dennimac, how are you getting on, hope things are going well.

Love Sandi

 

dennymac
Member

Re: Lung mets - please join in

How'd your first chemo go myplace?
myplace
Member

Re: Lung mets - please join in

HI denymac

 

Thanks for your note.  Must have been hard having primary and secomdary diagnosed at the same time.  At least I had 4 years respite.

 

Anyway I now have my first appointment for chemo, starting on Friday.

 

Love to you

Sandi

 

dennymac
Member

Re: Lung mets - please join in

the waiting is the worst ... Unfortunately some of the tests they do to see hormone status take a while to come back so we are kept in limbo! I'm over half way through my chemo regimen (docetaxel) and having hormone treatment of pertuzemaub and herceptin every 3 weeks also which will continue for as long as it works. My cancer is completely hormone and herceptin positive so I am getting the triple whammy treatment. Depending on your mums test results (hormone receptor status) they will choose the best treatment tailored to your mums specific cancer

Let us know how u get on 🙂
formymum
Member

Re: Lung mets - please join in

Thank you.. see I may well call one of those help lines in the next few days. Nice to see all the love on here xx

formymum
Member

Re: Lung mets - please join in

HI,

 

thanks for your reply. I'm sorry for what you're going through too and at such a young age too!! 

 

At the moment she has been told that she has fluid on the lungs and has swollen lymph nodes on her chest so because of her history ( and her other symptoms such as pain in chest and persistent cough)  they are very worried that the cancer has returned. She is still awaiting results from biopsys that were taken yesterday.. apparently it could be as long as Monday til she gets the results which seems crazy to me.. all this waiting around is awful!

 

Maybe if I could get back in touch with you once we have a firm diagnosis and plan.. would that be ok?

 

What treatment are you on and how are you doing in general?

 

Many thanks xx

Lucy_BCC
Member

Re: Lung mets - please join in

Hi formymum and welcome to the BCC forums, I am sorry to read about the difficult time you and your Mum are going through and along with the support here, our helpliners are on hand with support for you both so please feel free to call

Lines are open weekdays 9-5 and Sat 10-2 on 0808 800 6000



Take care
Lucy BCC

dennymac
Member

Re: Lung mets - please join in

Hi formymum I'm sorry to hear both your mother and you are going through this awful time 😞 I'm 32 and in January was diagnosed with breast cancer (primary) then a few days later was told scans showed spread to my lungs... Shock and disbelief followed and I know how she must be feeling. Has she he scans to pinpoint exactly what's going on or have they just said they think it's spread? There are a lot of treatments out there for people with secondary breast cancer and once she gets a treatment plan she will feel much more in control. The first few weeks are the hardest as u feel completely sidelined and don't feel like you're attacking this thing but likely they will get a treatment plan in place pretty quickly - I started chemo 3 weeks after diagnosis.
There are a lot of support structures out there that she can talk to... Maybe get her to join here so she can ask questions and vent to people who understand what she's going through. Sometimes it's hard for us to talk to loved ones through fear of voicing our innermost concerns and upsetting those closest to us - I've found this place a great comfort and the ladies here amazing to help answer my questions and calm my fears xx
formymum
Member

Re: Lung mets - please join in

Hi,

Hope you don;t mind me messaging you but I feel lost and thought you may be able to help me.

 

My mum has just ( yesterday) been told than in all likelihood her breast cancer has come back and she has swollen lymph nodes in her chest and has had a bad cough for months so it's all pointing to secondary breast cancer in the lungs.

 

My mum had breast cancer almost 5 years ago, had a mastectomy and one lymph node removed even though there was only the smallest trace.. in fact the doc said at the time that severa years before it would have been classed as clear. Anyway, she had chemo and since then has been clear and thought all was ok.

 

I know there is always a risk of it returning but it's such a bloody shock!! My mum is taking it very badly and seems to already be thinking her life is finished. I've not a clue what to say to her and I feel so weak and hopeless because I don't think I am going to be styrong enough to support her.

 

My mum is also my best friend and the feelings are so extreme that I just want to burst into tears every time I see her, which I know would be no help to her at all!!

 

I'm 41 by the way, not a child, my mum is 67. Any advice you could give or experiences you could relate would be very much appreciated.

 

Many thanks and much love.

Lynnq
Member

Re: Lung mets - please join in

Bumping this up for Sandi
Janet_BCC
Member

Re: Lung mets - please join in

Hi mumsp

 

Welcome to the BCC Forum.  You have come to the right place for information and support from your fellow members and I'm sure you will soon have some replies.

 

I've also attached a link to the section of the forum for family and friends where you might find some support for yourself:

 

http://forum.breastcancercare.org.uk/t5/Supporting-someone-with-breast/ct-p/supporting_someone_with_...

 

Very best wishes

 

Janet

BCC Moderator

 

 

Mumsp
Member

Re: Lung mets - please join in

Hi! Im new here, iam a boy and my mum (52 years old) was diagnosed of secondary lung mets 5 months ago. I ve been reading positive storys here and i have decided to post my mum situation.
My mum had breast cancer (stage 1) 6 years ago, it was an er- pr+ and her2- node of 1.8cm so she had removed the node and one lymph node (not affected). She was treated with 4 cycles of chemo and 25 sessions of radio, she started tamox but she didnt feel good and oncologist decided to remove it because it was a pr+ snd hormonotherapy wasnt essential.
She has passed all controls without any surprise until november that tumor markers were high. A rx showed a met of 1.8 cm in right lung, scanner another pleural tumor of 1,2 cm and pet scan activity in 3-5 mm tumors.
She had a biopsy of pleural tumor, the results are lung mets from the breast cancer she had but now its er+ pr- and her2-. Oncologist has decided to start with femara (letrozole), he asked to my mum to start in a clinic essay organized in the USA but it is in 2 phase (starting) so we have decided to start only with letrozole. One week ago my mum had a rx after 1,5 months treatment and the 1,8 node seems to be a bit smaller but on monday we will go to the oncologist so we are a bit nervous, we know that he will order a new scanner.
I ve been looking for information in pubmed and i ve found some articles about "palbociclib" and it seems to be a good drug for er+ and her2-, anyone is taking it? I will ask to the oncologist.
Best wishes for everybody, thanks for reading, hope posting here more replies with good news.
Sorry for my english, its not my mother tongue.. 🙂
sarahlousie
Member

Re: Lung mets - please join in

Hi Funnyface, I've been on a continuous combo of Herceptin and hormonal ie: first Tamoxifen then Arimidex Luckily for me this has worked and completely resolved the lung involvement although I still have something suspect on my liver which is getting smaller. I was stable for about 3 years then all of a sudden they just disappeared and I hope have permanently gone. Although I am having to stay on the drugs forever which is ok however I do suffer with extreme side effects which are having to be controlled with other drugs. 

 

Agree always hold onto hope good to talk to you all xxx love and light Sarah xxxx

funnyface
Community Champion

Re: Lung mets - please join in

Sarah, I'm impressed yours disappeared. Mine have never done that!! They have only ever shrunk a little or stayed stable, and grown. Gigli always hang on to hope!

myplace
Member

Re: Lung mets - please join in

Hi Dennymac

 

Thanks for your note.  Very glad you are doing well.

 

My secondary was found when I had a routine artery scan for an aneurism on the aortic artery, and they found fluid in the lung.  Tests found breast cancer cells in the fluid.  It was of course a huge shock as I did'nt feel unwell. 

 

Still, onwards and upwards, I'm just waiting now to start my chemo to start.  xx

 

gigli
Member

Re: Lung mets - please join in

Next month I will be upto my 2 year mark.  The time has flown so quickly but on the other hand it seems a lifetime ago.  Feeling happy and postive - the sun is shinning and I've even been in a betting shop for the first time and placed my first bet on the Grand National.  Beginners luck I'm hoping.  Life is good.  Looking forward to the future. X

gigli
Member

Re: Lung mets - please join in

Funnyface - 9 1/2 years - that amazing.  You've made my day and given me hope.  X

dennymac
Member

Re: Lung mets - please join in

Great to see you guys checking in! It's so nice to see you talking about living with it rather than it ruling you! Everyone is so different it's so hard! Xx
sarahlousie
Member

Re: Lung mets - please join in

To all the newbies myself and funnyface are living proof of life after a secondary lung dx. My lung mets have completely disappeared and I was told the scans lit up liike a xmas tree. Keep going with your treatment plans, and look after yoursleves, eat well, and give yourself some treats. When going through chemo I didn't feel much like laughing but found watching some of my favourite comedy films dvd's really helped to lift my mood I find you can see clearer when your mood is lighter add in a pinch of hope thats all anyone can do. 

 

Funnyface, 9 1/2 years is just brilliant, I'm 4 years down the line your an inspiration thanks for checking in. 

 

Sending you all lots of love and light Sarah xxx

 

 

 

funnyface
Community Champion

Re: Lung mets - please join in

Bev, Happy it's going OK for you!

Bevlaar
Member

Re: Lung mets - please join in

Aah well this certainly was a different birthday this year! Not the one we envisaged but 2 days into radiotherapy and alls going well so far.
funnyface
Community Champion

Re: Lung mets - please join in

Hello Myplace, I haven't checked in for a few days, so  just seeing your message. I'm sorry you had to join us and I'm sure you are whirling with diagnosis, tests, and treatment plans. I have lung mets, and have been dealing with them for 9 1/2 years. You will get your head in a better place once you ha v e a treatment plan! Hugs, Funnface

dennymac
Member

Re: Lung mets - please join in

It'd be brilliant if the H and P have kept u stable! Heard the combo is good and can work a long time! Let me know how u get on hun xx
nicky08
Community Champion

Re: Lung mets - please join in

Hi dennymac, yes, it's an anxious time as everyone says! Hoping you don't have to wait too long for the results.
I'm now on H and P having finished the chemo part in December. It takes a while to start feeling anything like normal but I'm getting there. I'm due a scan soon which will be my first after just having the H and P part so fingers crossed for me as well!
Nicky x

dennymac
Member

Re: Lung mets - please join in

Yeah thanks Nicky 🙂 getting nervous as had my first scan since starting treatment so il be disappointed if it's not working as well as I'd have hoped! Early indications look good so fingers crossed! That's me had my 4th chemo now.. Should find out from oncologist if she's gonna give me 6 or 8.. She wasn't sure at the start as my primary lump was so large! May pop my head into the other thread at some point too. How u doing? Xx
Lucy_BCC
Member

Re: Lung mets - please join in

Hi myplace
Welcome to the BCC forums where I hope the support will be a big help to you during this difficult time, our helpliners are also on hand for you with practical and emotional support so please feel free to call. Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

I am posting a link to the secondary information and support pages from BCC which I hope you will find helpful:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

nicky08
Community Champion

Re: Lung mets - please join in

Hi myplace, sorry you have to join us in the secondaries section of the forum but you will find us a friendly bunch who are always willing to help. Although I don't have lung mets I do have bone mets which then progressed to my liver 2 years ago. Many of us also have bone mets which us why the 'Bone mets-please join in' thread is the most active and, in the words of our lovely Helen, we tend to hang out 🙂 So, if you don't find this thread very active at the moment feel free to search around the secondaries forum and I'm sure you'll find support from one of the other threads. We do all understand how devastating a secondary diagnosis is but I think most, if not all, of us have found it easier to deal or cope with once our treatment plan is in place. Pop in whenever you feel like it and there's no right or wrong way with this forum, it's complicated enough to use even by us old hands LOL.
Take care
Nicky x
Ps dennymac, how are you getting on, sounds like the chemo us really doing IRS job which us great news.

dennymac
Member

Re: Lung mets - please join in

Hey myplace I was only diagnosed with both primary and secondary in January so I know how raw it can feel... Once u start chemo you will feel a bit more in control. I remember the scans and everything and all the appointments were all so overwhelming I just wanted to start!!! I'm now over half way, had my 4th round yesterday and my lump has shrunk heaps xx

What treatment will u be having? Big hugs to u! Xx
myplace
Member

Re: Lung mets - please join in

Hi there

 

Ive just been diagnosed secondary BC in lungs.  Bit of a shock.  Im waiting to be called to have pickline and start chemo. 

Ive not used a site like this before so excuse me if not doing it right.

 

 

dennymac
Member

Re: Lung mets - please join in

Hey how are all u ladies doing? Thought I'd bump this thread up for newbies and check in with some of the ladies I spoke to when I was first diagnosed

Hoped you're all well xx
sarahlousie
Member

Re: Lung mets - please join in

Hi gigli, here's a link to blog **********************/ hope this works. The menu on the right hand side shows pages of information on eating, supplements, and complementary stuff the general day to day writing is like a personal diary of my ups and downs its a place to try and make sense of the mountains of conflicting information on the subject sometimes it serves as a place for me to vent my rage and anger so there is swearing. xxxxxlove and light to you xxxxx
gigli
Member

Re: Lung mets - please join in

Hi Sarahlouise.  How do I get onto your Blog.  Can't find it.  Do you have a link?  X

 

Bevlaar
Member

Re: Lung mets - please join in

Amalfi...thats exactly what my onc and bcn say to me word for word! "You have to remember...you have a lot going on in your body!" Haha. Xxx
Amalfi
Member

Re: Lung mets - please join in

You wonder at the oncs not even wanting to find out more about our symptoms and the cause. I was breathless and had a horrible cough for six months. This was caused by lung mets and pleural effusion. I also felt really sick and nauseous all that time. I kept asking what caused the nausea because I hadn't heard anyone else suffering from it other than as a side effect of chemo. They just kept saying they didn't know or there was a lot going on in my body. They did offer anti sickness meds but nothing made any difference. Anyway all symptoms were alleviated after I went on letrozole so just hoping it keeps working for a long time.
Bevlaar
Member

Re: Lung mets - please join in

Hi cw....yes always breathless but being monitored at palliative (hate that word) and pain clinic monthly as they prescribed me small doses of oramorph to help with it. Cant say its done an awful lot..I'm still out of breath walking...frustrating for me who loves walking!!
I have a friend who has his own mindfulness, hypnotherapy and relaxation business who has sent me a few cds. They do help with relaxing and i also receive reiki and reflexology under the complementary therapies dept of the hospital. I also see a clinical psychologist referred by my Onc and she is amazing. Helps me enormously. But its strange about the coughing isnt it? My breathing gets raspy and i cough more always the week following chemo.
Ive mentioned to Onc as its clearly a side effect....possibly the chemo affecting the bronchii...but he just says he doesnt know why that happens apart from the nerves running through the pleura being irritated.
I read on the Macmillan site that breathlessness can be relieved and symptoms disappear with chemo. Hasnt worked for me yet! I live in hope lol!
Thanks for the info and advice xxxxxxxxx
stresshead
Member

Re: Lung mets - please join in

Hi Bevlaar..just noticed your posts on the lung thread...have 'spoken' to you on other threads but was interested to see your post about the cough/breathlessness/ throat issue dring cape cycle. I also have this...i was couighing up mucus (sorry..horrid subject). Had loads of cough medicine etc..always felt like there was something to 'get out of my throat'. Fortunately this has cleared although i still get the breathlesness. Often feel like i have a tight band around my chest and that someone is standing on me. I had the same thing first time round and it was always put down to anxiety. In any case please mention it to your onc.

I've also noticed that you often sufer from insomnia, as do many others, including me. At my last session with my psychologist she recomended some apps for  relaxation, meditation, sleep etc. Have put some on my phone but havent realy tried them out yet...just thought they may help ....they included Digipill, headspace, relaxation-sleep...but there are loads.

I know most people tend to use the bone mets thread so mayne you could help pass the word on. Much lovexx

 

Bevlaar
Member

Re: Lung mets - please join in

Must admit felt a bit sick after...but just fancied it lol! Xxx
Desi-2
Member

Re: Lung mets - please join in

I was with you this morning Bev would have have swapped your scone for my biscuits tho lol! X
Bevlaar
Member

Re: Lung mets - please join in

Okay....4.30am and can't sleep...what do you do? You get up make a nice cup of tea and tuck in to a huge beautiful fresh scone with blackcurrant jam and a dollop of clotted cream!! Mmmmm .....now this is a treat girls xxxxxxx