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Mets to lung

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ipenelope
ipenelope Member Posts: 233

Hello ladies. I sadly find myself joining this group within 18 months of initial bc diagnosis. Im 44 years old.

I had a wedge resection and lobectomy about a month ago and my oncologist is talking about oral chemo and immunotherapy together to treat this. My borders at surgery were clear thankfully. Gotta say with the Covid stuff going on and my recovery symptoms I'm going crazy lol.

Anyway, have any of you ladies done both chemo and immunotherapy after surgical removal and could you please share your experience?? I meet with my oncologist tomorrow for finalizing plan as she was waiting for tumor marker testing.

Any help would be greatly appreciated!!

I hope everyone is staying safe during this trying time!!

~Katie💗

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Comments

  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    Hi I have just turned 40 and been diagnosed with a solitary met in lung. I am seeing oncologist on 29th April to discuss treatment. Feel free to contact me to compare notes with treatments. Hope you’re OK x

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2020
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    Hi laides...I have a question...I have mets to bone and liver.... the last week on and off I was periodically having a small pain in area of my back that would be the bottom of my right lung.... Naturally I am scared its mets... I just had an MRI of abdomen last week for my liver and think they usually capture that area but may not have. I am scheduled for a full PET next week (bc of the progression in my liver) so i am sure it will be seen but I am wondering when there is mets in the lung and if there is pain when you take a deep breath can it only be once in a while or is it consistent? Any info would be appreciated.... :)

    Nicole

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020
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    Nicole,

    My lung tumor presented as pain in my left medial sternum though it was mid lower lobe, almost exactly in the middle of my lung. I had no pain with breathing, it was like a spasm type pain when I had it and it wasn't constant. I hope this helps!!

    I hope your pet scan shows things are steady with no new areas or progression!!

    Keep up the fight to kick cancer's ass!!

    ~Katie💗

  • moth
    moth Member Posts: 3,293
    edited April 2020
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    mine presented as a cough - which i still have. It was a lingering cough that got me to my gp who sent me for an xray who freaked out and said CT STAT and here I am :(

    They tried to biopsy mine and at that time discovered it was fully necrotic. The tumor outgrew its blood supply. I'm having a CT on May 11 so we will see if there are any changes. My main threat atm is multiple tumors in my liver. The lung met so far has just been a nuisance because of the cough, esp since all medical facilities here do screening for covid asking about symptoms and I have all of them but they all predate covid and are related to the cancer

    Betty80 - hi, nice to meet you & also whoever just joined recently and had a surgical resection...sorry I forgot your screen name and am on the next page so can't scroll to check

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2020
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    ipenelope Thank you very much for the info....I had the pain like 3 times in a row yesterday...and then never came back...I am praying its just muscle related. Yes LETS KICK CANCERS BUTT!!!

  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    I haven't had any pain with my lung met, just the occasional shortness of breath but to be honest, I've always had a slight shortness of breath like my mum, sister and daughter so not sure if it's related. I can't seem to find many solitary lung met ladies on here. Penelope can I ask, was your lung surgery recommended or did you ask for it as I am speaking to my Onc next Thur

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020
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    Betty80,

    I asked but the surgeon stated that given how quickly it showed up compared to ending chemo and that it was within 3 years of the initial tumor he would have encouraged it.

    My oncologist did mention last week that a panel of doctors who determine and recommend treatments for different stages of cancers likely would have been equally split on doing the surgery compared to not doing it.

    Have you already had the area biopsied?

    ~Katie💗

  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    ipenope


    Yes I had a CT guided needle biopsy. My HER2 was borderline so had to be sent off to a different lab. Results came back Friday, it’s still HER2- which is the same as original diagnosis in 2013. It’s also ER+ PR+

    I have read so many prognostic factors about having surgery but only if there are limited nodules confined to limited organs, which ours seems to be.


    I know my Onc will suggest chemo straight away but I’m going to push for resection before or after too.


    How are you feeling so far with treatment?

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020
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    Betty,

    I hope your oncologist is like mine and agrees with what you wish to do!! My 1st thoracic surgeon I did not care for, he did not even think the biopsy was necessary and encouraged monitoring it for 3 months and then rescanning, I said no I want a biopsy to see what the areas were. Thankfully he did it. I switched surgeons and my 2nd one agreed with the surgery and was so much better!! Not bad on the eyes either... lol

    At this time I'm good with my treatment plan but like I'm guessing many in the stage 4 group I don't like the unknown. Yesterday was first day of Abranex and Tecentriq and it went good, really tired yesterday evening and some today but not too bad.

    I hope everyone continues to stay safe and continues to kick cancer's ass 🥊🥊.

    ~Katie💗

  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    iPenelopE - I saw my Onc today instead of next Thur. He said as I have had aggressive chemo twice in the past and had a local then distant recurrence he thinks we should try Ibrance and Faslodex together first.

    If my lung met is stable after next scan he suggests Cyberknife instead of surgery. Not sure if I’m being treated aggressive enough and treatment will start in 3 weeks. I said I would rather surgery and he said he won’t rule anything out but with Covid and not knowing how I’ll respond to the new treatment, we can’t go ahead with it yet.

    Is your treatment iv chemo or tablets? Hope you’re feeling OK today.


    Moth - Thank you for your message above. How are you feeling today?

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020
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    Betty- I guess I've gotten lucky that both removal surgeries were before any chemo. My oncologist was surprised with my tumor given I did AC+T the last time and that's pretty heavy chemo, think that played a part in my treatment plan. I told her I wanted treatment to be aggressive given my age.

    I am doing chemo and immunotherapy IV through a port in my chest. Still feeling eh today though a little better, went on a small walk. Would really like to maintain some exercising this time around though think it's going to be challenging.

    I hope you ladies are staying safe and keep up the fight to kick cancer's ass!🥊🥊

    ~Katie💗

  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    IPenelope - I’ve just seen that your recent diagnosis is triple negative so perhaps the chemo is best for you?

    I had a local recurrence on Tamoxifen only a year after FEC-T.


    I then had overies removed, aggressive chemo again and switched to Letrazole so surely the Letrazole worked for a little while but I’m not sure.


    Never tried targeted therapies so I’m hoping they work together. If not, I’m going to push for chemo again. You sound like you’re getting your voice across and being listened to. Please keep me informed (if you want to of course). I can’t find many ladies on here with a solitary lung met, I think we are a rare case

  • ipenelope
    ipenelope Member Posts: 233
    edited April 2020
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    Betty- I actually had 2 tumors. 1 upper left and 1 lower left. Both removed, and triple negative.

    But i agree not to many Mets to lungs from what I've seen!!

    Im very lucky my team are listening to me and not poo pooing things. Sadly the oncology NP kinda poo pooed my pain back around Christmas but who knows if anything would have even shown up at that point. Everything happens for a reason right.

    I hope everyone iit's staying safe during this trying time and keep up the fight kicking cancer's ass!!🥊🥊

    ~Katie💗

  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    iPenelope

    I said this to my Oncologist that there doesn’t seem to be many cases with lung mets and he said it’s the 2nd most common after bone. Most the threads and information online ignore lung mets, I’m confused

  • bright55
    bright55 Member Posts: 146
    edited April 2020
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    Hi Betty and ipenelope the lung mets post has been very quiet in the four years I have been here.

    A lot if mets patients have more than one site so treatment options differ and more comments are according to therapy appear elsewhere. .

    Like yourselves I had nowhere else to post questions. Only about the therapy I was offered for my hormone positive lung mets. They are scattered mainly in rt lung and still stable and no bresthing problems or pleural effusion. I am on my second AI therapy. as over time the drug stops working

    Surgery is not the norm for lung mets due to complications ...

    unless oliomet seems cyber knife is an option

    or as ipenolepe has tn mbc the surgery and resection was vital to prevent rapid growth

    All the best with therapy and consults with specialist

    bright in hope



  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    Bright55

    That makes sense, I have been offered Cyberknife rather than surgery but surgery isn’t definitely ruled out.

    Have you considered Cyberknife or is it not suitable did you?



  • imagine
    imagine Member Posts: 96
    edited April 2020
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    My mets are in the plural area of right lung, multiple lesions. I had thorastic surgery to get biopsy. It was same ER+ as 12 years age. I do not see many people on here with my type and area of mets...does that mean we do not live very long? So Scared!!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2020
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    Hi All,

    As Bright mentioned, there are a lot of women with lung mets and/or pleural mets but we don’t tend to post on that thread often as we lean more towards either treatment related conversations or the bone mets thread (as we typically have those too). Interestingly, you managed to start a new thread with the same name as an older thread (which has 17 pages of comments). The difference is all lower case letters instead of a capital M on mets. That one has been active at times.

    I was diagnosed with a right pleural effusion over three years ago and am doing well, still working full time. There are many who have done well for ages with lung mets including Bestbird who has been on this site for quite some time. It’s not an instant death sentence despite what Dr. Google says!

    I hope this is reassuring.

  • nikisworld
    nikisworld Member Posts: 8
    edited April 2020
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    Hi ladies. Thought it would be appropriate to post in this chat. I too was diagnosed with solitary lung met this February. I am 30 years of age and triple positive. Can’t help but feel upset but I’m learning to let go of my fear and concentrate on trying to be positive instead which is not the easiest thing to do. My oncologist has started me on chemotherapy combined with herceptin and perjeta. Just trying to take one day at a time. Hard not to think about the future.

  • bright55
    bright55 Member Posts: 146
    edited April 2020
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    Welcome to new posters..sorry you have been recently diagnosed..what I do know is that the first year is a crazy time waiting to know if treatment offered will work..mostly it does.

    For me ...Low tumour burden,being hormone positive.asympotamic and therapy naive.no chemo or rads have worked in my favour.. ..

    The new drugs ribo and palbociclib are now on offer to team with AI therapy for those who are Hormone positive

    a good time to be diagonised is now as immunotherapy is on offer to Her+ and TN patients

    Staying fit..is a must

    loose weight and walk every day

    Stay in employment

    Keep busy with projects for yourself first.then family

    Therapy can decrease Vitamin D, calcium , and raise cholesterol and BP so be acitve in checking with GP

    Keep posting and checking other Mets posts

    All the best

    Bright in hope


  • Betty80
    Betty80 Member Posts: 16
    edited April 2020
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    Nikisworld

    So sorry to see you on here too. I was 33 when originally diagnosed, I’ve only just turned 40.


    Have you been given a treatment plan yet? Have you started?


    I am due to start Ibrance and Faslodex on Tuesday

  • tzoul
    tzoul Member Posts: 8
    edited May 2020
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    Hi everyone. It was difficult for me to find you (lung mets) and still haven't seen many with her2 bc lung mets. Anyway I was originally dx at 2017 as triple negative (41y). It turned to be misdiagnosis (long story). So in 2018 lung mets....You can imagine how disappointed I was. I started immediately second chemo cycle (taxol) with herceptin and perjeta this time. Two years after this combo I am NED(very very thankful for that). My advice: always double check the her2 status (only the fish test catched it). Best wishes to all. Keep fighting!

  • bright55
    bright55 Member Posts: 146
    edited May 2020
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    Wonderful news Tzoul...its seems that we have to be our own advocate to be pro active with staying on top of the diagnosis we are given ..

    So many things can change from first diagnosis and there are still many unknowns with scans and tests

    Into my fifth year with hormone positive lung mets ....still stable

    All the best

    Bright in hope

  • Betty80
    Betty80 Member Posts: 16
    edited May 2020
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    Hi ladies,

    Just checking on you all on here as we were diagnosed around the same time.

    I finally got my Onc to agree to surgery to resect the nodule on my right lung. I have come to hospital today and will be having surgery tomorrow.

    I started Ibrance and Faslodex, only 1 cycle so far. Yesterday should have started cycle 2 but it’s been held off for surgery, then I will start again in a couple of weeks.

    How are you all getting on with treatments so far

  • ipenelope
    ipenelope Member Posts: 233
    edited May 2020
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    tzoul- congratulations!! That's awesome!! I know about missed diagnosis my initial was minimally estrogen positive so treated that way and 7 months off AC + T I have mets to lung that is triple negative.

    Betty- YAY about surgery!!! I hope your surgery goes well and prayers for a quick recovery and that the surgeons hands are true and get what they are going for!!

    I hope everyone is having a good week and keep up the battle to kick cancer's ass!!🥊🥊

    ~Katie💗

  • Betty80
    Betty80 Member Posts: 16
    edited May 2020
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    iPenelope - thank you! My oncologist asked the surgeon for his expert opinion and he said he’d definitely do the surgery for me.

    It’s been a painful 24 hours and given the choice to go home now or tomorrow and I’ve said tomorrow.

    Hope you’re OK and getting on well with your meds

  • ipenelope
    ipenelope Member Posts: 233
    edited May 2020
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    Betty- how are you doing post surgery?? I'm so glad there surgeon was in agreement with the surgery!! It makes it so much easier!! The original thoracic surgeon I saw did not come across on my side, he wanted to monitor it more and reluctantly agreed, I asked my MO for another recommendation for a surgeon and I was extremely pleased with the 2nd surgeon!! Glad I changed. He agreed with it and thought it was a good idea.

    I hope everyone is having a good weekend!! Keep up the battle to kick cancer's ass!!🥊🥊

    ~Katie💗

  • Betty80
    Betty80 Member Posts: 16
    edited May 2020
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    iPenelope,

    I am very sore but glad to be home. My Oncologist ended up writing to the lung surgeon for his expert opinion and the surgeon agreed straight away.

    Follow up will be in less than 2 weeks. How are you getting on with your treatment? Are you coping well

  • ipenelope
    ipenelope Member Posts: 233
    edited June 2020
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    Betty-

    Treatment is going good. More bone pain this time around. It usually hits days 3-4 and slowly goes away by day 6. The hot flashes are terrible and so is the insomnia. Treatment itself isn't much different though no premeds which I really like!!

    I'm sorry your so sore!! Where are you hurting?? What all did the surgeon do for you? I had my left lower lobe fully removed, and part of my left upper lobe.

    Sorry but it's nice having someone to compare situations to!!

    I hope everyone is doing good, and staying safe!! Keep up the fight to kick cancer's ass!!🥊🥊

    ~Katie💗

  • Betty80
    Betty80 Member Posts: 16
    edited June 2020
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    iPenelope,

    I remember the bone pain with Docetaxel. Are you allowed to take anything for it, after checking your temperature is normal? I was allowed paracetamol which helped, but check with your nurse first.

    The plan was to do keyhole surgery, wedge resection of my upper right lung. They said if they needed to take up to 2 lobes then they will decide during surgery. When I came round, the surgeon said they took a wedge From the upper right containing the tumour plus checked the other 2 lobes and removed something small which wasn't cancerous and my lungs are clean. I asked twice about the second non-cancerous thing and both surgeons separately insisted it wasn’t anything cancerous but as it was there they removed it. On my discharge notes it says a solitary lung met removed.

    I had a drain put in (do you call them drains in America?). It went through the side of my back and pierced my shoulder which was agonizing and the pain wasn't under control when they woke me up. I also struggled to breath and had a panic attack which I have never had in my life but I just couldn’t catch my breath. I was told the painkillers would be administered during surgery so ideally wake up numb but it didn’t work.

    I'm now 5 days post op and still very sore and achy. If I don't take at least paracetamol I am in pain. They also gave me Codeine which I'm only taking if I really have to as it makes me drowsy. How did you feel after your op? How long did you take to recover? I had my op on Thur and they wanted to send me home on Fri, but I couldn’t move with the pain so I went home on Sat. They were really good there though, they said I could stay another day if I needed to but I came home

    Hope you're feeling OK, I'm thinking of you and everyone else going through treatment