mets to lung
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I did get the path back on the left lung biopsies. HR+ PR weakly positive 3% and Her2 equivical, then FISH came back negative. They did not do the path on the nodules in my right lung. I had 2 primary breast cancers, the left lung path is following the characteristics of the left breast cancer, but it was the right breast that was HER2 + and the right lung positive lymph nodes were nearer where the right breast cancer was. I have sent a message to a 2nd opinion oncologist to check the path on these lung nodules. I am scheduled to start Navelbine on thursday. I don't know what to expect. If anyone can chime in with some info, it would be appreciated.
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Hi all. My question is about pleural effusions and when to have a thoracentesis. I have had a medium/large pleural effusion since my MBC diagnosis 3 years ago. It has been stable and I have not had any SOB symptoms in normal day to day activities.
Recently my new onc suggested that I meet with an Interventional Radiologist to see if they would recommend doing a thoracentesis after all this time. My prior doctors seemed to give me the impression that the pleural fluid is left alone until symptomatic or major progression of volume. I have only been drained once at diagnosis years ago. I am interested to hear about anyone's experiences with pleural effusions/thoracentesis. Any good questions I should ask the radiologist PA? Things to look out for? Do your docs have you wait until you have symptoms to get it drained?
I would like to know what happens when/if the lung decides not to reinflate. How can they help you then? I don't currently have any active lung nodes. There is one that showed up on PET after my initial thoracentesis but that has been stable without activity ever since. Any tips or suggestions are welcome. I am learning so much from you all! Thank you!
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Hi bookgirl, it does seem strange to suggest thoracentesis when you have no new symptoms. I have had the procedure twice, both times when I became increasingly breathless due progression. I did not have a choice, so I cannot help you with what questions to ask when you see the radiologist. I can say it was a relief when the fluid was removed. I hope someone who has been in a similar situation to you chimes in and helps.
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Hi Bookgirl,
I’m in the same boat as Denny in that I can’t really provide advice. I had a large right pleural effusion when I was first diagnosed as metastatic which kept getting worse, causing extreme shortness of breath and coughing. At its worst I could barely walk 10 feet without gasping. I had a thoracentesis but the fluid quickly returned. We then inserted a PleurX Catheter so that it could be drained twice a week. It took several months until it finally dried up and now I have had a small amount of loculated fluid in pockets ever since. It never changes much and doesn’t cause issues so we leave it alone.
It does seem odd to do something after all this time but it also seems odd to me that they left it if it is moderately large. I think it can permanently damage the lung if left - only about 2/3 of my right lung is functioning at this point. Perhaps that’s the thinking? I would reach out to your MO to see if they can shed more light on why they are suggesting this.
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If it's been there for three years and it's been compressing your lung all this time, I would guess that there's already a pretty good chance your lung won't reexpand. I only had an effusion for maybe six months and after the last thoracentesis my lung didn't reexpand.
If it's not bothering you I'd probably leave it alone.
Pulmonologists seem to have varying opinions on it. The first one I saw wanted to put in a drainage catheter right away during the first thoracentesis. Another one on the same team that I met months later told me he preferred to leave effusions alone if they aren't bothering the patient. I had five thoracentesises(??), one per month, until after the last one the fluid stopped filling up so fast. Two months later my lung still had not recovered though. Luckily it's only lost maybe a quarter to a third so I'm fine!
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I agree with parakeetsrule. The main reason to get a thoracentesis even if you don't have symptoms is so that your lung will reinflate. After three years, reinflation is unlikely. Since you aren't experiencing any symptoms, that's seems ok. How much fluid was taken out the last time you had a Thoracentesis?
Wonderful that you no longer have any active lung nodes. Your pleural effusion should not get worse if your disease is minimal and stable.
Hugs, Susan
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I actually landed in the hospital after the last thoracentesis because when my lung didn't reexpand, my body decided to fill the new gap with air! They always do an xray shortly after the procedure so that's when they noticed it. They weren't sure at the time if the air pocket was growing or why it was there so they admitted me out of an abundance of caution. They were afraid it would keep growing and collapse my lung! But it turned out fine. The gap just refilled with fluid in the space where my lung would normally be and I guess the air got reabsorbed ?
I forgot earlier but there was also a small pocket towards the top of the lung that did reexpand. But it was only maybe 5% of the lung, judging from what my uneducated eye could see on the xray!0 -
parakeetsrule,
So sorry to read about your experience. Yikes! That's scary! I've never had an x-ray after the procedure. Glad they took good care of you.
Hugs, Susan
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I just completed 2 cycles of navelbine and I think it is not working. My CA-15 cancer markers have doubled since before the chemo to 43. Anyone know the next line of chemo? Or will they complete the 3rd cycle and do a ct scan. Do cancer markers drive the chemo decisions? I didn’t get my chemo today. Oncologist wants to see me in the morning first. So chemo is delayed. I hope they have another plan if this chemo isn’t working. I am pretty concerned. I am ER + Pr - HER2 +2 equivocal IHC. neg with FISH. I am refusing anti hormones drugs and I am not sure there is anything else. I will know tomorrow. I know he mentioned enhertu as the next line. Any suggestions of ideas for treatment is very much appreciated.
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Gven the state of "upgrade" I'm not sure if you can tell my MBC progress so I will recap. 2019, breathing problems. Thoracentisis showed MBC. Scans showed lungs & liver. Last scan in Feb showed only liver nodes remain. Had 5 thoro, about 3 weeks apart. 2 liters was most fluid taken @once. Left lung still shows hardening on CT, about 1/4 to 1/3 lights up. Breathing getting worse, not so much when vertical, but really nad in horizontal position. I don't think there is anything to improve the damage, but has anyone found breathing exercises that help? I have to sleep with Menthol cough drops in order to breathe. I've also started taking puff of oxygen when lying down. Even bending over the garden makes me cough and sometimes dizzy. Suggestions, experiences all welcome.
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Hi all...so I frequent in the Liver thread I am stage 4 and now TNBC use to be ER+ HER2-.... but at my last scan in March the report said : "2mm left apical nodule not seen on prior exam. This is below size limit of PET resolution. Attention on follow up".... My MO wanted to stay on treatment since I am running out of them...and I agreed...but I am obviously convinced it is a lung met. I never felt anything there until a few days ago 2 times I felt something in my left lung but went away. I have no shortness of breath..have never had a cough...etc... Just wondering if anyone had it start like this
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Nopink exercise might help because it can improve your lung capacity. I'd ask your doctor. But have they checked to see if the effusion has returned? Those sound like the symptoms I had when I first discovered my effusion.
Carm, no, they don't base treatment decisions off of cancer markers alone. They can be a flag that progression is occuring but for many people they are unreliable. They'll do scans to see what's going on before switching treatments.
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carmstr, Can you tell us why you are refusing anti-estrogen treatments? Those treatments are generally the easiest to take and most effective if you are ER+/HER2 equivocal.
nopink, So sorry you are having such a hard time breathing. I used a prescription cough syrup called Guaiatussin that really helped me to sleep.
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Thanks for thoughts. I started using my oximeter and found I'm rarely above 90% O. Heart rate is similar or higher. Started using oxy contentrator when I lie down and it seems to help with coughing & better breathing. This morning I decided to go to water aerobics and see how I handled it. Exercise in vertical position was fine. I'm trying to hold out until I see MO for CT next week. Think I can do that. I'll try to keep walking & doing water aerobics in the meantime. If I hold here, I'm good with waiting to see what CT shows. I'll definitely bring it up to her for advice.
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Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: https://community.breastcancer.org/forum/8/topics/882768?page=1#idx_3 . Thank you!
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CT showed growth in liver tumors, stable left lung plural effusion, new atelectasis in rt lung similar to left. Got switched to Halaven 1st infusion Tues. Trying to walk a bit, but breathing is tough. Oxy level 86%-90%, so no breath or energy. Worsening since saw MO Tues. She didn't think thoracentisis was warranted, but I'm not so sure. In bed most of day. She is hoping chemo helps, but how long could that take?Trying to avoid ER. Will portal 1st thing Monday. They answer quickly. Whine over...for now
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I had five thoracenteses before my treatment finally reduced the fluid buildup. I'd go see a pulmonologist instead and see what they say. My oncologist didn't handle my effusion treatment at all. She let the pulmonary office do it. They're the experts! And if you're having trouble breathing they need to do something.0
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parakeetsrule - thanks for the advice & encouragement. Will do Monday
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So exhausted & breathless, I went to ER today. ER doc agreed w/MO that thoracentisis wasn't answer to the malignant growth, likely pockets that wouldn't drain. I've been using oxygen for 3 weeks at night and she ordered a daypack. Hoping it gives me more comfort & energy. I've been in bed way too many hours a day. Will give this a try while I wait to see if Halaven chemo does me any good.
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nopink— do you have a Pulse Oximetet at home?
While I was on Afinitor, I developed pneumonitis. I could not lie down to sleep, had to sleep upright. SpO2 ranged from 69-88. Should be 95 or higher. I was SOB big time. Did a week in the hospital. Given 2 IV antibiotics which cleared up a lot of the mess in my lungs. But still issues with low SpO2. Not enough oxygen getting to my organs. I was put on oxygen. I have a home concentrator which makes oxygen for me. And I have a portable unit like you see in tv commercials.
It’s a pain but I like to breath. Most of the time my pulse ox is 95-97
Hope you find a solution that works for yo
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Yes, I've been using a home oximeter to track. Short walks help.
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I have my first met in the lung. Its very tiny but I would like to know if there is any treatment for lung mets? Like Rads etc?? (besides surgery)
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Hi Nicolerod
Not usual for surgery or rads
watch and see approach
I only have lung mets and still stable
no breathing issues
Have changed anti hormone type now on faslodex n kisquali for past three years
All the best
Bright in hope
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Nicole,
I think it depends on your lung met situation. When I was first diagnosed, I had a 4cm mass and multiple nodules in my right lung. I had the large mass radiated back then and it seems mostly necrotic. The smaller nodules in both lungs at this point are too numerous to radiate. I did, however, recently zap a lung tumor that was pushing against and eroding a few of my lower right ribs. I have known people who have had successful lung resections but don't know anyone who has done it recently. Unike your liver, your lung will not grow back if a section is removed. I have also heard that lung resection is horribly painful.
Since you just have one tiny lung met, it may go away with systemic treatment. Hoping this will be the case for you!
Hugs, Susan
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I was diagnosed with Bone, Liver and Lung mets, after 6 months of Ibrance +Fulvestrant + Xgeva I am NEAD. My pathological reports have always been normal even during diagnosis.
Anyone knows if this means the affected organs can go back to normal function ?
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Hi malebreastc,
You don’t mention what abnormal functions you are referring to so it’s difficult to answer with certainty but I have found that, while I have never been NEAD (we don’t do PET scans, only CT), things did pretty much go back to normal with effective treatment. I was initially diagnosed with a lung full of fluid. I still have some loculated fluid in that lung and about 1/3 is non-functioning but no longer have any cough and, for the most part, the lung seems to be doing its job. I have some SOB at times but it’s hard to know if it’s due to the disease or the treatment.
I have not had any signs that my liver wasn’t functioning other than some elevated numbers in blood tests. Those have gone back to normal. I have had some pain due to one lesion that is pressing on the capsule. It’s much less now.
All to say, I think things should improve with NEAD. Congratulations on getting there!
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Hi Sadiesservant
Thanks for your response, mine was PET and nothing lit up, I read somewhere that once mets appear and even after they don’t light up, there are scars to the organs and damages to the bone which could be permanent, so the question is does everything go back to normal
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Hi maledbreastc...wonderful to attain positive response..as to the term normal this is an unknown quality...here in Australia the term used us stable..
Many factors at play to determine normal
Our organs and bones can recover
We will always be termed metastatic and require monitoring forever
Mbc is a lurker many years even decades can go by before it appears
So once diagonised and we have a positive response life can get back to normal
We are our own advocates
Be vigilant and continue with monitoring
All the best
bright in hope
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Thanks bright55
You are right that Mbc is a lurker, I have had recurrence after 17 years and Doctors are surprised, now near complete response is another surprise I be
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hi ladies
I am here for my momAnd she will be on hormonal therapy
Dose it help with lung Mets ? In case of ER/PR +ve
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