mets to lung
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Happy memorial Day. I spent the morning removing one of our trees that fell down in a neighbors yard. Fortunately our neighbor owned a bucket truck so we didn't have to carry the logs and I got to supervise while my husband cut it up with a chain saw.
Irishlove. After my experience with the Dr's and my stepdaughter who dramatically over reacts to everything I decided that I was only going to tell people, who I believed I could count on, about my diagnosis. It is hard enough, I don't need people making it worse with there lack of understanding. When the time comes more will be told but until then it is a need to know. My family is not allowed to share either unless they can truly trust the person not to put me in a coffin prematurely. People react so weird to cancer. I think the big issue with pleural metastasis is that all the literature says it is end stage but with all the new drugs it is no longer true. It is serious but not an immediate death sentence like I felt the Dr's were thinking.
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bruters, that’s alotta work to remove a tree!
Geezzzzz, these friggin’ doctors and their lack of bedside manner! I think it’s horrible an ER doctor who is no breast cancer specialist or even a general cancer oncologist would tell someone they don’t have much time left. They could emphasize the seriousness but why do they not say “we must get you to a specialist or oncologist for a definite prognosis.” I get ticked off that so many doctors outside the cancer world think they know what’s going on when in fact they are so far behind the times and out of touch with today’s standard of treatment.
Also, if a medical professional doesn’t make eye contact with me, I would have to say something. It is horrifically dismissive for them to treat any patient in that manner. Not in a rude way, but I’d have to call it out and say, “I hope I’m not being cast aside because of this prognosis.” Or something to that effect.It is smart to decide who you want to share your personal matters with. We don’t need to be taking care of the emotional fallout of others when we are experiencing it ourselves.
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Devinemrms. I got to supervise and take pictures today my husband cut up the tree, my neighbor came to the rescue to carry the logs it to the wood pile and another neighbor came late and raked up the bark scraps. We were done in an hour.
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Brutersmo.. you made great time with the tree. I appreciate the help or I'm the one watching dh cut. Wish more people would take it to burn. We have 11 acre Woodlot.
We have a friend that's ER dr. Told him I'm now stage 4. He assumed it came back in breast and said: now you'll need a mastectomy. Just like I thought!seems they dont do enough to keep current.
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bruters, as they say, many hands make light work! Having the right equipment helps, too!
gailmary, it’s as if some doctors seem to think they are experts in all medical fields. More of them need to acknowledge and verbalize that some medical matters are beyond their scope of knowledge. It sounds like a lot of them want to sound competent when in fact their words make them appear woefully out of touch.
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Gailmary. So true about ER docs. They should keep there thoughts to themselves unless they know what they are taking about. My ER doc told me I would be dead in a couple of months I needed to get my affairs in order. I am now past my "expire by" date. 🤣 Laughing now but freaked when he said it. I talked to my oncologist today. He is trying to control my side effects to letrozole and not move to a second line of treatment. He made the comment that my cancer has responded well to the treatment plan and he wants to keep me there. He said there is so much new stuff in the pipe line and advancements that he has trouble keeping up with everything. But he knows the longer I stay on my first line the better chance I have later of a new or improved treatment and better quality of life. I don't expect an ER Dr to know all the treatment options but there focus and co.ents should be on the facts.
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Hi ladies (and any gents here)
I thought I'd throw this out to you. I've been having issues with my lungs lately. Dry cough, wet cough, sometimes coughing that wakes me up in the middle of the night. I did have COVID in November which landed me in the hospital for a couple of nights with febrile neutropenia.
I saw a pulmonologist for some ground glass opacity, but that seems to have resolved and was probably due to the COVID and not cancer.
Today's CT scan showed "New focal parenchymal changes in the right upper lobe consistent with inflammatory change although neoplasm is not excluded." I also have something going on with my esophagus and swallowing and I have an order for a swallowing eval.
I've seen mention of parenchymal changes in this thread, but don't know what to think. My MO doesn't seem to be concerned and wants to stay on my current treatment plan. I will see her next Monday and will get bloodwork done on the Friday before.
I feel like I know my body, and something isn't right. I'm thinking about calling the pulmonologist to get his opinion.
Any thoughts?
Carol
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Hi Carol, I think it's a great idea to consult with the pulmonologist. We trust our MO with our care but when it comes to lung and pulmonary function I want a specialists opinion also.
It's very likely that the parenchymal changes they see with inflammation is the reason for the cough. What's the plan CT in 3 months?
Agree that we all know our bodies and I think when we feel something is off we need to follow our gut. Hope you get some answers that decrease your worry. Also a quick answer on the swallowing issue.
Sending good vibes and strength to you.
Andrea
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Thank you, Andrea. I'm in a bit of a funk today. Stupid cancer, stupid lungs, stupid everything right now…
I'll call scheduling later this morning and try to get appointments for the swallowing eval and and the brain EEG recommended by the neurologist. I need to get outside and walk first.
Thank you, again. I truly appreciate your response.
Carol
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Carol, I wish I could help;but i.new to lung mets.
Questions of my own.
We're any if you with lung mets instructed to continue to wear face masks in public or crowds? Do you?
Also were you instructed to stay I doors when the air quality Index is poor and unhealthy? Like when the smoke was here from Canadian fires.
Just wondering. My MO says little.
Gailmary
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@sunshine99 , Apologies for posting here (no mets, just watching nodules) but I've dealt with something similar before. The problem with the esophagus could be esophagitis (mine was caused by silent GERD, small hiatal hernia, Barrett's esophagus discovered after a severe upper GI bleed.) Six months after rads I developed progressive radiation induced pulmonary fibrosis. My pulmonologist told me that was most likely due to microaspiration of stomach acid causing subclinical ILD (interstitial lung disease) which resulted in the out-of-control scarring reaction. Both are inflammatory rather than neoplastic.
An upper GI endoscopy with biopsy would check out the esophagus (I had been ignoring dysphagia.) They are pretty hesitant to do lung biopsies and didn't need to in my case since the scarring pattern on the CT was a definitive diagnosis. The upper right lobe is close to the esophagus; I've lost the function of both middle and upper right lobes. Treating the stomach acid with PPIs and the lungs with inhaled steroids (helps the horrible dry cough) is keeping me pretty stable.
My RO referred me to a specialist ILD pulmonologist as other pulmonologists aren't too familiar with the RIPF. Any gastroenterologist would be familiar with esophagitis and treating that might be enough to clear the upper lung. I hope you can get this figured out.
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maggie, WOW! Thank you for the information. Dr. Google (I know, I know…) did say that GERD could cause esophageal pain when swallowing, but I didn't know about the proximity of the upper right lobe being close to the esophagus but that's where the "parenchymal changes were spotted. The report said that it may be related to post radiation, but my rads were to my hip, spine, and femur and that was three years ago.
I have a swallowing eval scheduled for June 13th. I keep a loose journal/record of my issues. I'll keep better track of those. I did decide to stop taking magnesium at night as both the tablets and the capsules seem to trigger a spasm of my esophagus.
I'm a retired speech-language pathologist and used to accompany skilled nursing facility patients to get MBS (modified barium swallow) studies. I've never been on the other side of the x-ray machine. Should be interesting.
Again, thank you for your reply. I'm thankful for this forum (even with the changes) and appreciate no one jumping down my throat (LOL) if my mets are not yet in my lungs.
I wish everyone a good Wednesday.
Carol
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Carol, I'm glad you are having the swallowing study done. If it isn't normal they will look elsewhere and esophagitis (as well as neural issues) could be a cause. I never had any symptoms of GERD; I used to brag that I had a stomach like iron because nothing bothered it. I never had any pain with the GI bleed that hospitalized me but the gastroenterologist said acid reflux probably killed all the nerve cells long ago. When I had issues swallowing meat (at first) and then other things I just ate differently and buried my head in the sand. It's good you are investigating this.
I had a neck CT with the esophagus incident but didn't have one of my lungs until I had full blown RIPF several years later. My pulmonologist told me that interstitial lung abnormalities (slightly increased lung density in a kind of mosaic pattern) would probably have shown up in my lungs prior to radiation. @cookie54 is the imaging expert and can probably explain this better. No one has proved it yet but the pulmonologist is convinced this is caused by microaspiration of stomach acid.
The people on this thread are all very helpful to those of us with weird lung issues. The RIPF will probably be what wipes me out but I will take it since it has a better time span prognosis than lung mets. My pulmonologist said the cough is caused by nerves being exposed to air by the distorted parenchymal tissue. Different things work for different individuals but inhaled corticosteroids and gabapentin at night was the answer for me. All the best getting your problem solved.
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Gailmary. My oncologist told my I only needed to wear them in large crowds. Because of low neutrophils from ibrance. I keep one with me incase I find myself around someone with a cold symptoms. Most of the time I try to keep a nice bubble of air space around me.
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I continue to have fluid collecting around my lungs and the intermittent draining was becoming painful. I had a catheter installed a few days ago. Still sore, but nothing Tylenol doesn't take care of.DH will drain for me. Our first attempt will be this afternoon. We watched the video and the nurse was very detailed showing him what to do. I think this is going to help relieve the excessive collection and then excessive draining which was causing pain. I have a CT next week, but have already done the blood work and it doesn't look promising. I'm expecting to have a change of protocol. Hopefully they have something else to offer. While I can't do many of the things I used to do, DH has picked up most of the cooking and I can set the table and still enjoy having friends over for dinner. My sister came to visit and planted new flowers in my garden so I didn't have to bend over and cough. Watering my new little plants is enjoyable.
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nopink2019, Hope your first draining was comfortable for you. My husband does/did mine. Keep the rolator from the tube in your hand to control flow. If it gets too uncomfortable you can decrease the suction. I found that after the first two or three times the discomfort subsided completely.
I do have a question regarding the pleurex cath for former cath users. I couldn't get more then 2 drops out yesterday when the pain became a 10 out of 10. I suspect there's nothing left to drain as prior drainage 6 days ago yielded 40 mililiters. My concern is risk of infection if I don't access it again until??? I have a CT scan set for June 12 then MO visit June 22. He said if it looks good I can have cath removed. But I don't know when surgeon would remove it and I worry about that dreaded chance of infection. I can tell you we waited 1 hour and tried again with same OMG pain and only two drops of fluid. Even the lowest setting was too much. We called three different doctor offices to no avail. Friday late afternoon. Best that was offered was go to ER for pain. I didn't need the ER, just want an darn answer!
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My pleurxy catheter has only been in a couple of days, so I still have stitches. Will this be less sore when those stitches come out?
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nopink2019, I have to apologize for keying in wrong name and date. geez I'm off tonight. lol
I only have one stich to hold the tubing in place and it's not removed until the cath is removed. I'm not sure how to answer your questions. I didn't have a lot of soreness after a week or so, but did have tremendous pain from the biopsy. They didn't stich up that area and a RN described it as being stuck by a knife. She was right about that! Remember no swimming or baths. First few weeks I was nervous about showers so I would take one and immediately do drain and change of bandage afterwards.
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@irishlove, That is my plan on showering for the first few times until we get this procedure down better. Until then I think a sponge bath maybe okay
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nopink2019, Yes sponge baths are fine. I know how much I worried the first few weeks. I washed my hair in the sink so as not to get the area wet. I even doubled up on bandages. Hey one can't be too careful. How many stitches do you have? How did you do with draining? I hope it went well and the next drain is even less fluid.
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@irishlove, DH did my second drain at home yesterday. I have a couple of stitches, one where it goes in and one where it comes out. Lots of thread hanging around which will come out next week. They took out 750 ml when they put in the catheter and we have taken out 550, then 500. After checking the bandage closely I did stand in the shower and did my hair and bathed. Did not stand directly under the water on that side and everything was totally dry. Even got the bandage on in a more comfortable position this time. Look forward to seeing pulmonologist next week and hope I will be able to increase the interval between drainings.
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nopink2019, we were instructed to do 3 day intervals. Went to the MO's office for fanny shots and asked the RN about removal since the fluid dried up. The MO gave me permission to go to the ER (since the cath was inserted whilst in the ER in March). Gee after 5 hours and a happy dance prior to removal, they couldn't get the darn thing out. Cut both stitches and pulled. Tried three times to no avail. I have an appt. Thursday with a surgeon. Shouldn't have celebrated so soon.
Read an interesting articles about mets to pleura that was dated 2023 and showed a better prognosis then I had expected. Must also have been 5 or 6 major advancements in different cancers that were recently reported on. Looks like they are working with a drug for lung cancer after removal of tumor. I know that wouldn't help MBCers but can't help but wonder if it will trialed for us in the near future.
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Irishlove I know which article your are taking about. It is the only one that didn't say we had a short a poor prognosis. I believe with the new meds and if it is our primary mets site we are no different then anyone else with soft tissue mets.
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I'm trying to get used to this catheter to drain plural fluid. I'm a side sleeper so it's a little annoying. Getting better as I get used to it and it becomes less sensitive I think. I have been using an airplane neck pillow sort of buffering the catheter to try to relieve pressure on it. Sometimes it works, hard to get in the right spot.. the pillow is a blow up so I am able to change the density which I think is key to getting it comfortable.
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I found this article on another site. Just wanted to share it.
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nopink2019, DH found a build a pillow. It allows you to add layers of thin quilted material until you find the level of comfort and support needed. It might work better then the blow up pillow. I can't tell you the name of the pillow but google should reveal it. Sleeping on my back was the only way to get sleep. Actually a reclining chair worked best in the beginning. My drain was removed Friday. I'm swollen, bruised and sore and glued, but looking forward to a good shower and swim in a few days. It was a life saver and as annoying as it was, I'm grateful for not having to go to the ER for repeated thorescentesis.
brutersmom, I read that article, twice. Oh my does that writer nail MBC to a tee. Hey I'm no warrior, just trying to stay alive and make memories with my only grandchild.
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@irishlove, I know it is a relief to no longer need the catheter. I go in Wednesday to have the stitches removed and hopefully will extend the time between our draining. Right now I'm getting 300 every other day. The pillow idea is a good one. I have done a lot of sewing and have some materials that would be perfect to make a little nest for me to try to sleep on my side. The blow up didn't work, too large. Thanks for the suggestion
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Hi everyone. Hope you are having a pain free and stable or improvement with treatment day.
Just rec'd my first CT without contrast (try to limit contrast due to UTI problems courtesy of MS bladder), and I posted this over at Mel's place. Everything shows improvement to mild improvement. So that means Ibrance is working!
I wonder if you put more stock into CT scans or Pet Scans for lung mets??? Reason I ask is Pet scan showed one area of cancer in the left lung, whereas first CT scan (when I was diagnosed in hospital) and now the first CT scan after starting treatment, shows no mention of metastatic cancer in left lung. Any takes on this??? Pet scan showed no liver involvement, whereas CT scan said mild interval decrease in size of right large pleural-based diaphragmatic mass with mass effect on liver. Can anyone interpret that for me?
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Hey irish, so glad the ibrance is working, awesome!!!
So a the mass on the RT sounds like it is is between the chest wall and lung( pleural based) and the diaphragm is the muscle separation between chest and abdomen. So by radiologist saying it has mass effect on the liver it means it is pressing /encroaching on the liver space.
PET is generally used to stage or restage a cancer diagnosis. CT is the standard for follow surveillance of metastasis. It is possible that the area in your left lung has resolved with treatment,therefore not seen on this CT. How long ago was the PET? Do you have a know separate liver mass or liver mets? To answer your CT question yes, CT is very efficient for lung mets and other mets.
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Hi Cookie, Oh thank you so much for helping me to understand these reports. First CT scan was March, 2023 (diagnosed stage 4 from that scan). Pet Scan was April, 2023. 2nd CT scan was June, 2023. I'm happy that the pleurex cath is out. I do not have any liver mets listed, fortunately. Plenty of others, though, including lymph nodes and lungs and bones. Still overwhelmed by the amount of areas and I had zero idea what has been cooking in this body. The largest mets in the pleural showw mild improvement, but I'll take it since I've only had 3 cycles of Ibrance. Start 4th tomorrow and very anxious to start back on it.
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