mets to lung
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Susan, I am glad to hear you are able to do yoga. Hopefully it will resolve in time for your Hawaii trip!
I am getting my first lung biopsy tomorrow. I am a bit nervous. This will be my first biopsy of my lung nodules because they were too small to biopsy over the past few years.
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Kar,
Sorry to hear that your lung tumors have grown. I've had two lung biopsies and they seemed to be straightforward with low risk. However, with the second one, after doing seven cores, they were unable to find any cancer. I definitely have lung mets but they were biopsying a spot where I have a large mass that was previously radiated. That area may be necrotic. The two active, smaller tumors were too close to my heart to biopsy. So ironic that we spend all our time trying get rid of cancer but when you need a sample, they can't find any cancer.
Hope you have a safe and productive biopsy!
Hugs, Susan
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I have my lung biopsy coming up. The one nodule is deep so they said they would be consulting with the radiologist to see if they are able to get to it or they have to do more invasive. I won’t lie - the thought of this lung biopsy is so nerve racking. Just did a bone scan last week so hopefully within the next week we know what we are looking at. For those that have done the lung biopsy - have you done the needle or other?
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Hi Rachel,
I had a CT Guided lung biopsy where the needle was inserted into my chest. I was awake, but mildl sedated. For me, it was a very straight forward procedure, although the results (de novo stage IV) weren’t what I was hoping for. That lung biopsy was almost 4 years ago. (June/2017). I had the procedure at Princess Margaret.
I hope it all goes well for you. I’m happy to answer any questions you have. I know it’s a very scary and stressful time.
Anna
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Thanks Anna. I will definitely reach out to you. I had my first cancer treatment at PMH. Now I’m out in Mississauaga so will be doing my treatment here at Credit Valley
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Rachel,
I have had two lung biopsies. Both times, they took some cores through my back. Like Anna's experience, they were CT-guided and I was only partially sedated. The procedures were easy and painless but the second was unsuccessful because they weren't able to find any cancer. I have a large mass in my lung that was originally 4cm. It was radiated so, apparently, it was all necrotic tissue. Or they just missed the right spots. I have two other tumors that are too close to the heart to be biopsied.
Hugs, Susan
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I wasn't sedated for my lung biopsies, just given a local. It was boring. Just a lot of being still. I didn't feel pain, just occasionally a bit of pressure.
The most important thing from my perspective is to bring a book & make sure my phone was fully charged &/or bring charger or battery bank because they make you stay for hours afterwards and do repeat chest xrays to make sure your lung hasn't collapsed.
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Rachel, I had my lung biopsy last Monday. I was nervous for it, but it went smoothly. The needle went in under my armpit. They were planning to lightly sedate me so that I would be awake and coherent during the procedure. They ended up knocking me out! I had a nice long nap. I was felt slight discomfortable for 2 days before returning to normal. ~Kar
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Thanks for the insights - it’s so strange that it’s now like a hurry up and wait. I have the biopsy booked and they mentioned to ensure I know that I may be there for 8+ hours so book will be my friend.
Waiting to hear back for bone scan - they didn’t have the results yesterday so I’m waiting for that as that’s the last scan that I had to do to understand if there are any other things to be concerned about.
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Hi all - sadly the doc attempt at needle biopsy of right lung did not work. Lung collapse, chest tube were the results. Now we try again but this time in larger surgery which I was hoping to avoid. Anyone had the open biopsy and know about healing process
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Hi Rachel, I’m sorry to hear about the ordeal you are going through. I can’t really help as I had pleural mets so a biopsy would have been difficult. Generally my MO is not keen on biopsies as he worries about the risks which you have experienced. I hope the surgery goes well.
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Rachel- I'm so sorry you went through that ordeal. Lung biopsies can be tricky. Your team sounds like they are trying hard to get you on the rightpath. It must be very important to your treatment plan to get a surgical biopsy. Hoping all goes well. How was the bone scan?
Dee
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Thanks Dee. The bone scan did show some sort of abnormality in left pelvis. I had MRI today of pelvis to take another look. Lung wedge biopsy surgery next Tuesday. I’ll be spending a couple of days in hospital after but my hope is that we finally get all the detail on the nodules so I know what’s next. Waiting is the worst.
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Rachel- stupid cancer. I hope the mri gets a good answer on your pelvis. Prayers that the lung biopsy surgery goes well. Try to let them take good care of you in the hospital and rest if you can.
Dee
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Rachel- any update?
Dee
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Hi Dee. Well I am recovering from wedge resection surgery that was performed on my right lung two weeks ago I have had awful time getting back up and going. This surgery took the wind out of my sails for the last couple of weeks. I have meeting with oncologist and surgeon this morning to kearn more about the tumor and next steps. The good news is that after a separate MRI - the docs determined that they do not believe the spot on my pelvis to be anything cancerous so that was good news. Therefore, I’m dealing with the Mets to lung which they cut out in wedge resection. I’m not sure what treatment would be next as there is nothing else but I assume they will want to be sure it’s all gone in lungs? Any ideas?
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Rachel
Getting the cancer surgically removed is gold standard! I so happy for you that it is out.
I don’t have any experience with lung surgery. Maybe someone else could chime in. Could you get some physical therapy to help with movement and scar tissue? Hope you are better soon
What systemic treatment plan have they discussed? Staying on tamoxifen? Have you been tested for brca? i would ask they send the tumor sample off for next gen sequencing to foundationone or TEMPUS. It can give you an idea of potential targeted therapies.
Dee
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Hi All, just found this thread but recognise several names.
Not great news for me. 2nd Scan shows fluid on lung again though small - and nodes in pleura slightly larger. Plan short term is to increase Xeloda dosage by extending from 10 to 14 days to see if the dose was maybe just too small to be effective. Bearingin mind the SEs were awful initially and are now fine. My MO was clearly surprised as my first scan was so good. We'll try this for 2 cycles and rescan. She said this is not normal practice, but neither was my severe initial reaction expected. Cross posting to xeloda / lung mets threads for any advice.
Feeling the heavy loss of so many of us recently and I might be wise to take a break from BCO for a while just to keep my head straight.
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Hi Karen,
I’m sorry to hear of your news. I’m glad your MO is not giving up on Xeloda so quickly however. It seems to me there is a tendency to be a bit over reactive with more frequent scanning that we see these days. As long as you are not suffering with side effects from the progression….
I know how you feel about losing so many lately. I find it hard as well as it seems to have come in waves. So many of those who I leaned on when I was initially diagnosed are gone. It makes it hard to forget the reality of our situations.
Sending hugs.
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I've was experiencing a lot of pain in my shoulder, front of my chest, and back. My Interventional Pulmonologist suggested I reduce the frequency of my Pleurx drains. I was doing a drain every day. Tried every three days but my fluid buildup was making it hard to breathe so moved to every other day. Still, I drained close to 600mls after just skipping one day. Trying every day again but my pain has come back making it difficult to sleep. So it's either pain or severe shortness of breath. He also said that it was unlikely that my lung would dry out using the Pleurx. I've been doing it for four months, mostly every day. Now what?
Anyone else who experienced pain while doring Pleurx drains? He said it usually isn't painful.
- Susan
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Hugs appreciated Sadie!
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Thinking of you, Karen!
Susan, I'm sorry you're having so much trouble with the drains. Maybe you should call the pulmonologist and let him know things aren't going well and see what he says.
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Hi Susan,
I would suggest your pulmonologist has never had his lung drained if he thinks it's not normally painful.. LOL! Like you, I had a large amount of fluid build up between draining. In my case they were doing it twice a week which resulted in about 800-900 mL being drained each time. My oncologist hoped that we would be able to use the amount of fluid as an assessment of whether the treatment was working but that didn't work out. I had so much irritation after each drain that I am sure it simply stimulated the lung to make more fluid. It sounds like you may be in the same boat. I suspect the problem is that some of us are just more sensitive/attuned to our bodies which means we "feel" things. (My MO was shocked that I have pain with my liver mets as I only have a couple but I knew weeks before the diagnosis that it had spread due to weird jabs..)
There are a couple of tricks that I learned which may help. First, I had the nurses drain the lung SLOWLY. If they went too fast I had a lot of irritation, coughing and pain. If they went reasonably slowly I was able to be much more in control of the draining process and could head things off at the pass before it went too far. (The nurses often wanted to have the bottle on the floor beside my bed thinking if it was below the level of my body it would work better. That's not necessary... it's a vacuum.)
Secondly, don't let them try to drain everything. The PleurX bottles are under a pretty good vacuum (or they don't work) which is damaging to the small capillaries in the lung. I found that if they went slow, I could tell by the rate when the lung was nearly drained (don't let them speed things up at this point - they will try, trust me). At this point I would prepare myself. Once it got to the point it was essentially done I would get a pain that would shoot up my chest in the right lung. That was our cue to STOP. If we followed this procedure I would have a bit of discomfort for an hour or so but it wouldn't last. If they ignored me I would be in discomfort for a good 24 hours which, in your case, would end up being pain all the time.
My lung did eventually dry up after about six months. It wasn't really a gradual reduction of fluid. As I said, I think there was enough irritation that my body just made more fluid to ease the irritation. My body is good at making fluid... However, my personal opinion is that the constant draining acts a bit like pleurodesis - the scarring from the irritation ultimately leads to a reduction in fluid. (One other thing to watch for... when mine stopped draining suddenly there was concern that it might be blocked as there were still pockets of fluid in my lung. The surgeon used a syringe and some saline to see if he could push fluid through. BAD IDEA. It caused an infection and I ended up on the bathroom floor that night with a fever and barely able to function. Oops!) I still have loculated fluid in my right lung four years out but it doesn't cause me any discomfort. I do suspect it makes me more susceptible to respiratory illnesses like pneumonia.
I hope you manage to get this to a point when it's a bit easier on you. I remember what it was like to be gasping to breath just walking 100 yards and that was with only one lung filled with fluid. It was brutal. I can't imagine how anyone manages if both lungs are full! Take care! Pat
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Pat,
Thank you SO MUCH for the insightful advice. I'm sure you know that it means so much to get help from someone who has gone through the same troubles.
I was wondering the same thing because I have been stable on Verzenio+Exemestane. I don't want to switch treatments. He did tell me to try to stop before emptying my lungs to try to alleviate the pain. Hopefully, that will help. I've also started coughing over the last few days. Had a chest x-ray that showed an increase in atelectasis since my last CT scan on July 27th. Did you ever get an oxygen supply at home? I worried that I will suddenly get worse and not be able to breathe. This thought is causing me a lot of anxiety so I've been taking Olanzapine at night to help me sleep. Taking Gabapentin for the nerve pain and Aleve for the rest of the pain. I'm a wreck.
Reading about Video-assisted thoracoscopic surgery (VATS). A woman in my support group did this procedure and now her fluid is gone. On the other hand, another woman in the group got rid of her pleural effusion in two months using a Pleurx.
Leaving for Honolulu, my hometown, next week and so sad that I won't be able to swim in the ocean.
Hugs, Susan
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Good advice from Pat/Sadie. Slow is much better - I had a chest drain in earlier in the year and they drained off 3.5 litres. But I could only manage max 400ml at a time before massive coughing fit. So I overruled the boss who wanted 500ml at a time and told the nurses that’s all I could tolerate. Sometimes you just have to stand your ground - it’s your body and you know best how it copes.
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Karen, when I had the larger volumes taken off (a couple of times before we decided I needed a PleurX - the fluid came back with a vengeance in no time at all) it was really hard on the system. I could manage a couple of litres but after that it got super painful.
Susan, your most welcome. I feel like I lean so much on others that it's nice to be able to help.
I realized after that you must be draining yourself. Here it's done by a homecare nurse but the principle is the same. Go slow and watch for signs that it's getting near the end of the flow. It sounds like the coughing could be from the draining. I also have permanent atelectasis to the bottom of my right lung from the fluid (I essentially have two thirds of my original lung volume). I think that may be common when you have pleural effusion for an extended period. Despite this, I never needed oxygen. It's funny how much we feel the shortness of breath with only one lung involved as people do quite well with only one lung. Go figure...
I'm not familiar with that procedure. I know pleurodesis can be harsh and isn't always successful. I think Bestbird also had success drying up her lung with a PleurX so I think it's worth giving it a try for awhile if it doesn't stop you from trying the other procedure down the road.
Sorry about your dip in the Pacific. But I'll be thinking about you wading in the ocean. I'm not a big traveler but hope to make it back to Hawaii to visit some of the other islands in the next year. At the moment, the US doesn't recognize my COVID vaccination as I had to have Pfizer and then Moderna but they are talking about a possible booster for immunocompromised. Fingers crossed. Safe travels!
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I'm sorry to hear so many are experiencing pain with draining using the PleurX catheter. I drained the fluid at home, and controlled the velocity by gently pinching the catheter tube to slow it to a more comfortable level. I don't remember draining until completely dry - just when the fluid was nearly gone. When systemic therapy begins to work, draining is no longer needed.
In case it may help, below from my book, "The Insider's Guide to Metastatic Breast cancer" which is also available as a complimentary .pdf, is a list of drainage options. For information about approved treatments by subtype, contending with side effects, cutting edge research and more, please visit https://www.insidersguidembc.com
Pleural effusion, which may accompany lung metastasis, is a buildup of fluid between the layers of tissue that line the lungs and chest cavity. Often the fluid contains cancer cells. Pathology testing should whether the pleural effusion is "exudative" (the fluid has excess protein, blood, or evidence of inflammation or infection) or "transudative" (characterized by a low cell and protein content), based on the chemistry of the fluid. If the fluid transudative it's very unlikely to be malignant, and if it's exudative, malignancy is still a possibility even if malignant cells don't show up when the fluid is tested, so re-testing should be done as warranted, along with any other recommended tests. If the effusion turns out to have malignant cells, testing should be done for ER, PR, and HER2 receptivity, since it is possible that the cancer cells in the effusion may have a different profile than metastasis elsewhere in the body.
For patients who have pleural effusion, there are three methods of draining the fluid to provide relief:
Indwelling (Pleurx or Aspira) Catheter: This is the surgical insertion, under general anesthesia, of a small tube placed temporarily into the pleural space that allows the patient or his/her family member to drain the fluid into a bottle as needed. Patients with an indwelling catheter are fully mobile and are not "attached" to the draining bottle except when draining the fluid. Once there is no more drainage at all, the catheter is removed either in the doctor's office or an outpatient procedure. Overall, indwelling catheters seem to help prevent the fluid from building up again, provided that the patient's systemic treatment is working. The Pleurx catheter works via suction, and the newer gentler model is the Aspira catheter, which is a bit less uncomfortable because uses gravity instead of suction for draining.
Pleurodesis (sometimes referred to as a "talc procedure") is a process in which substances, such as talc, are used to try to get the edge of the lung to stick to the chest wall to decrease the chance of the fluid returning. Although this procedure seems to help prevent the fluid from building up again (provided that systemic treatment is working) it can be painful and usually requires a brief hospital stay. Some patients have reported discomfort months and even years after the procedure. In rare cases, the procedure may fail altogether, rendering it impossible to drain the fluid thereafter because it becomes trapped in a honeycomb of many small pockets (called "loculations"). Of all options for draining malignant pleural effusion, this appears to be the most risk-prone.
Thoracentesis (sometimes referred to as "tapping") is an outpatient procedure that involves placing one needle per required side into the pleural space. Although local anesthesia is administered, this procedure can be uncomfortable and may cause scarring if repeated over time. The procedure also does not hinder fluid buildup again. These tips may make the procedure less uncomfortable: 1) Request a numbing agent before the needle is inserted to feel more comfortable after the procedure. 2) Request that the fluid to be withdrawn slowly in order to avoid low blood pressure or a "fainting" feeling afterwards. 3) Lean forward with a soft pillow supporting your head and upper torso while the draining is underway via your back.
Warning: If a patient is experiencing shortness of breath but the doctor cannot find anything in the lungs that is causing it, the patient should be checked carefully for blood clots as well as for cardiac issues. Either of these issues may cause symptoms that appear to be lung related problems, when in fact they are not. Additionally, a condition called "pneumonitis" (inflammation of the lung), can cause shortness of breath and coughing. Since pneumonitis can be caused by cancer treatments such as chemotherapy and radiation, MBC patients may be particularly susceptible.
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Hi everyone. I’m so scared. I have Lymphangitic carcinomatosis. Can anyone help me?
I got 2 years out of ibrance/Letrozole then decided to hold off on Piqray and try Verzenio/Fulvestrant. I got 4 months on this second line therapy. I just saw a pulmonologist who told me to enjoy the time I have not to think about this maybe watch the Tennis/US Open this weekend.
I have innumerable lung nodules on both lungs but they have caused me no trouble and I’ve been asymptomatic. The Lymphangitic carcinomatosis is on my upper right lobe which is where he said the wheezing is coming from. He said my lymph nodes are clear which tells him it traveled via bloodstream. I asked about resection and he said it was pointless.
Can anyone who has had a resection tell me how they decided if you were a candidate? To me, SBRT, surgery, or RFA could work in this one are then I go back to having all these asymptotic tumors.
What type of dr does the surgery and what type of dr does Radiofrequency Ablation?
I had a CT scans two weeks apart and he told me it’s growing. I had a Cerianna PET scan last night but I don’t have the report yet but he did look at the images.
I also don’t know which therapy I should get on next. MO wants fulvestrant Piqray.
I want to get another NGS. I’ve had foundation 1 both times. What are the differences? Should I go with a different lab? I’d like to get a lung biopsy but they said they are too widespread and not big enough.
So sad to read about JFL. She has a young son like me and she is one of the ones I thought could chart her way out of this. I’m sorry for those of you having progression and lung issues.
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novagirl, I had a lobectomy of my right middle lobe at the beginning of my stage 4 diagnosis. At the time I only had a single nodule in my lung and a single hilar node so MO wanted to be aggressive to remove all mets at the time, thus a lobectomy. Your situation sounds different, so I’m not sure when you say a resection, are you thinking a wedge resection or a resection of a lobe? Either surgery is done by a thoracic surgeon. RFA is done by interventional radiologist (IR). Lobectomy is a major major surgery you’ll need at least 4 weeks most likely more time to recover. Wedge resection is easier but it depends on how big the area is. If SBRT is an option, it would be my first choice bc it has least collateral damages. It’s done by a radiation oncologist (RO).Please keep us posted if/when you can about what you choose to do. I’m rooting for you!
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novagirl
I understand your fears after getting this diagnosis. BIG HUGS
From what I’ve read, your next regimen is a very important decision Hopefully your MO has consulted the tumor board and called on outside experts to review your case. He is doing lots of diagnostics to be sure of the extent of the diagnosis.
I found this-
“Only tumors with effective anti-tumor agents will respond to chemotherapy (e.g., Wilms tumor/trophoblastic tumors). There are isolated reports of considerable remission of pulmonary lymphangitic carcinomatosis in various malignancies with hormonal therapy, chemotherapy, tyrosine kinase inhibitors(eg.apatinib), and certain monoclonal antibodies(e.g., bevacizumab, cetuximab).[23][24][25] A report of intravenous eribulin successfully achieving rapid symptom control and partial remission with the disappearance of pulmonary lymphangitic carcinomatosis in a case of metastatic breast carcinoma in visceral crisis has also been published.[26]“
The article gives hope that if you find the right drug you can get some control over the cancer.
This issue is about your life and seems like you need confirmation that your next drug is the best choice. I could not find where local therapy was an option. Your pulmonologist gave you good advice about not letting this consume you, but he/she should have tried to give you some hope!
Stay determined and keep us informed!
Dee
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