mets to lung

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  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited December 2021

    Susan, I had a pleurodesis done in Jan this year after a total whiteout of fluid in my right lung ( 3.5 litres drained off). I too had expected to get back to pretty much normal, but I get very breathless on stairs/ hills. However a couple of things:

    I exercise a little with a personal trainer who is an expert in with what I call ‘ broken people’. We’ve found that while I get breathless very quickly which is scary, I can actually sustain activity - which is very carefully controlled and a slow build up- for far longer than I thought as long as it’s on the level- which is a confidence booster. My oncologist also said that there would be scarring from the pleurodesis which would contribute to breathlessness. They both encourage me to continue with expansion breathing exercise daily and that definitely helps.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2021

    Thanks for that helpful information, Karen! Any way you can post what breathing exercises work for you?

    Hugs, Susan

  • chicagoan
    chicagoan Member Posts: 1,053
    edited December 2021

    Susan-Have you gotten chest Xrays to see if the fluid has returned? If it has, you may need another pleurodesis or to get a pleurex catheter inserted. Do you have a pulmonologist on your team?

    Karen-I'll also be interested in learning about your breath exercises.

    My left lung is permanently damaged from having so much fluid in it 5 years ago. Most of the time I am not short of breath but I do have trouble climbing stairs with a mask on. I can do other vigorous exercise but I feel the lungs when climbing uphill.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited December 2021

    Same for me Chicagoan. I had a lot of fluid in my right lung five years ago which caused permanent damage (I have about 2/3 remaining - the bottom never reinflated.) I also have breathing issues when I go up hills and climb stairs but for the most part have no trouble. Sometimes it seems to be getting worse but I think it may be linked to fatigue from treatments and the disease.

    Sorry you are experiencing this Susan. It does seem odd to me that it has gotten worse so I also wonder if there is fluid sneaking back in.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited December 2021

    When you all are talking about fluid in your lungs do you mean actually IN the lungs, or around the lungs in the pleural spaces?

  • chicagoan
    chicagoan Member Posts: 1,053
    edited December 2021

    Around the lungs, in the pleural spaces.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2021

    Thanks everyone for the many helpful comments! I have had chest x-rays that show some loculated fluid but nothing big enough to drain. I do have "hazy interstitial and airspace opacities throughout the right lung" as well as a lot of nodules (read small tumors). I have CT scans next Wednesday. This week I also had chemo and two rounds of radiation to my right lower rib where a lung tumor is pushing into the rib and eroding it.

    I was pretty ok walking on flat surfaces but now even that causes shortness of breath. Just walking in my tiny kitchen makes me short of breath sometimes. If I keep moving around, it gets better but any time I sit down for a while, like for a car ride, when I try to start walking again I'm out of breath and even feel like I might pass out. Thankfully, my oxygen saturation was 97 on Tuesday.

    I watched a couple of youtube videos about COPD breathing exercises. They both recommended the same two exercises. This one is cute: .


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited December 2021

    yes Susan the video is good. Expansion just means drop the shoulders and expand the rib cage outwards. Principle is the same to give your lungs more room - it’s just PT and if you don’t do that your lungs will stay in that same range which makes us breathless!

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2021

    Thanks Karen! I've been doing the exercises and my breathing is already feeling better. I wish my pulmonary surgeon had told me about this four months ago! No PT after surgery at all!

  • moth
    moth Member Posts: 3,293
    edited December 2021

    Got my ct report and I have a new lung met 4.1 x 3.9 cm. I will ask if it's a candidate for rads but I'm pretty sure it's too close to the previous rads field. Because I also have a new met in the liver, looks like I'll be switching systemic tx to trodelvy.

  • anotherone
    anotherone Member Posts: 555
    edited December 2021

    Sorry to hear that , moth.

    Wishing you to find a silver bullet for it .

    Hugs

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2021

    Moth,

    So sorry about your lung progression. Is it affecting your breathing? Trodelvy is a fantastic drug and I hope it takes care of your lung.

    Hugs, Susan

  • rachel5738
    rachel5738 Member Posts: 658
    edited January 2022

    Just to add my experience, my right lung is about 2/3 capacity as they did wedge resection - strangely the tumour was actually neuroendocrine cancer - no idea how that just randomly popped up in my right lung 🤦🏻‍♀️  I also got COVID one year ago and they see additional scarring in the upper area. I’m back for MRI/CT tomorrow to look at “concerning” areas in lymph nodes around previous surgery and also one in chest. The addition of this new cancer has thrown my case back to the tumour board here. At this point, they want these scans to see any progression from scans in October. Damn cancer is a thriller coaster ride that I can’t seem to figure out how to get off. PS doc is looking at left lung where there are two nodules but now they need to biopsy to see which cancer. You can’t make this s*** up. Lol. 

  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited January 2022

    Hello all.

    I am so happy to read so much about the lungs. Mine is an issue with the medialstinal lymph nodes/parahylar nodes strangling my airways--in August my left main airway was completely occluded on CT. That was eye opening. Although Abraxane (started and switched to Taxol because of the shortage) has shrunk those nodes, other areas are growing, including new mets. Now switching to Xeloda with my fingers crossed.

    Many many thanks to all of you.

    Movingsoccermom

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022

    Hello! You are only the fourth person I've come across (including me) with mets in the mediastinal nodes. I was starting to think I was a huge weirdo. :) I also have some in the hilar nodes, among other places, neither of which I'd heard of before and had to look up in anatomy diagrams!

    Fingers crossed our treatment works! I still don't know if mine is yet.

  • moth
    moth Member Posts: 3,293
    edited January 2022

    I had tumors in hilar lymph node at dx in 2020 but they're not mentioned in the latest scan... I don't know if the radiologist just got bored with reporting on them, or if they're minor in the large scheme of things (like giant tumors in my lung & liver) or if they're gone. My original tumor was in inner quadrant and close to chest wall so I always wondered about things moving into those lymph nodes from there, rather than the axilla.

  • piksie
    piksie Member Posts: 132
    edited January 2022

    I'm also in the mediastinal and hilar lymph node club as of June. But like Moth, they haven't been mentioned since, likely due to the lymphangitic carcinomatosis that was diagnosed at the same time. Xeloda was working wonders on my bone mets, but did zilch for my lungs. Luckily, Halaven is working quite well based on my symptoms. (Although I'm forced to take a 2-week break in treatment due to COVID. Grrrrrr!!!!)

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022

    Yeah, they aren't my main met either and I also wondered if that's where the cancer had been hiding out. The main area of concern is all the mets in the left pleural cavity and in between my lungs. I also have a suspicious spot inside my right lung but it's too small to tell what it is, plus a spot on T5.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2022

    I have had mediastinal lymph nodes since the beginning. I don't think this is a rare condition. If you've got lung nodules/tumors there is probably cancer in your mediastinal lymph nodes. My largest one is 2.1 x 1.7 cm. I have never heard of a mediastinal lymph node completely occluding your airway. Perhaps this is starting to happen to me as I'm extremely short of breath. I've got so much going on in my lungs that I don't pay any attention to the lymph nodes there. Just hoping that this trial drug I'm on will help my lungs.

    Movingsoccermom, sorry you have to deal with an occluded airway.

    Hugs, Susan

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited January 2022

    Hi all, I don't think I qualify as having had lung mets BUT I had cancer in mediastinal nodes and hilar nodes. Like ParakeetsRule, I had to look up anatomy charts on these nodes.

    Mine are considered to be "resolved" as they no longer have SUV and are not picked up on CT or PET Scans (so perhaps just too small?).

    However, one of my many symptoms that I had shared with both my Primary Care doc and Oncology PA is that I felt like I could not take a deep breath. I was told I had "reactive airway disease" as my lungs were clear and my pulse oxygen was good. Nope - it was nodes putting pressure on my wind pipe. This pressure feeling went away quickly once I started treatment. At the time I of dx the pressure had become progressively worse over 3 months and I had to sleep sitting up. It was both shocking and a relief to find that within weeks of my fulvestrant injections I could sleep lying down.

    Movingsoccermom, hope your next treatment gives you some relief and soon.

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited January 2022

    Cancer cells were found in the fluid that was drained off my lung. My appointment isn't until 1/20 because I had Covid (fever free 2 days now). So my question is how long have you gone between treatments? I will be over a month since I have taken any chemo medicine.


  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022

    I wasn't treated for over a month after cancer cells were found in my fluid. I don't think a month is very long in the grand scheme of things, but it is horribly frustrating to feel like nothing is being done!

  • anotherone
    anotherone Member Posts: 555
    edited January 2022

    I was not treated for 2.5m9nths after diagnosis - research , choosing oncologist , biopsies, insurance issues. CT scans done at the beginning and at the end of this tumeframe did not show any change - obviously the lesions must have been growing for years before so a couple of months would change nothing

  • moth
    moth Member Posts: 3,293
    edited January 2022

    I'm 4 weeks past last chemo (was due last week;it was q21 day) and I missed immunotherapy on the 31st of Dec & will be missing tomorrow.

    My tumors grew significantly in the 12 weeks between my Sep & Dec scans so I'm anxious to get back on the treatment ASAP. Who knows when in those 12 weeks they started growing & how long my ago my treatment stopped working but being now another 1/3 of that time frame without treatment is making me angsty. I'm waiting for the bureaucracy to sort out my access to Trodelvy....

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited January 2022

    Thanks so much, Parakeet, Anotherone and Moth. I'm glad to know that I shouldn't stress over the delay. I am hoping to go to a new doctor on the 24th who might do the blood test I want done. On the 20th, I get to tell my current oncologist that i am going to delay the new med until I get at least get the blood drawn for the test.


  • cookie54
    cookie54 Member Posts: 836
    edited January 2022

    Hi All, I have a couple questions regarding diagnosing lung nodules as mets. Today I had my follow up CT scan and the lung nodules continue to grow they are being called mets on CT. However they are too small to biopsy at this time. As we all know there is nothing like confirmation by a biopsy to see exactly what I am dealing with. So who has dealt with a similar experience? What did your MO advise at this point? Did you then start seeing a pulmonologist? Did you have to sit and wait until big enough to biopsy or did you have a wedge resection, bronchoscopy, CT guided biopsy? I'm waiting to hear back from my oncologist as I have a million questions running through my head! I hope it is appropriate to post here but I wanted to get feedback from you ladies that have been there. Thanks, much appreciated!

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2022

    Hi Cookie,

    Sorry you are dealing with progression in your lungs.

    I started off with a large mass in my lung so it was easy to biopsy. I then had radiation to the mass. After the radiation, they tried to biopsy the same sight and after seven tries were not able to find any cancer. I think they just kept missing the cancerous spots. I have a ton of nodules in my lungs. In the end, they used a biopsy from my breast. Very handy to still have a breast tumor because it is an easy site to biopsy.

    Lung biopsies are not without risk. A CT guided core biopsy is usually how they do it. Lung resections are big surgery and very painful so they would not do that for a biopsy. Have never had a bronchoscopy but I don't think they use it for a biopsy since they are looking in your lungs with a camera. Are you thinking that your lung tumors may no longer be triple negative? I don't think seeing a Pulmonologist is going to help anything. Your oncologist should know best whether or not to biopsy. If you do a biopsy it is usually done by an interventional radiologist.

    Hugs, Susan


  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022
    I also have a lung nodule that's too small to do anything with. On the PET report they said they couldn't tell if it was cancer or not, so I guess we'll see what the little stinker does this year.
  • cookie54
    cookie54 Member Posts: 836
    edited January 2022

    Hi Susan, Thanks for your feedback, all good info! Well I think it has to be tnbc but MO won't restart chemo without confirmation. She just got back to me and said wedge resection was aggressive at this point so suggests another 3 month follow-up. I can't help but picture this running wild as I sit and wait (probably not but it feels that way). It seems to be slow growing but the wait is absolute torture!!!

    ParakeetsRule, thanks for responding. Yes they are little stinkers , although that's a nice way of saying it. Today I choose a little bit more harsh words lol.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2022

    Hi Cookie.

    I can't be much help in terms of nodules as my lung issue presented with a pleural effusion. They were able to find cancer cells in the fluid they pulled off.

    I know it's tough but it sounds like your MO is making the right suggestion. Breast cancer doesn't typically move that quickly so it's unlikely that things will get out of control in three months. And I think, if it was moving fast you would see it in other places, particularly in the bones. As Susan and Parakeets have mentioned, lung biopsies are very invasive so wouldn't be the first choice unless you were fairly certain that they are malignancies.

    Sending positive thoughts that the nodules disappear before the next scan.