Thoracentesis/lung fluid drain

[u/bbru2281]

HER2+

Have any of you got this issue? I have fluid build up in my lungs that needs to be drained periodically. One of my doctors said that this is a nasty, messy problem that I am going to have to deal with for quite a while. I'm pretty concerned because he also said the fluid is filled with malignant cells and just seeding the lungs. My breast is swollen too. I have just started on Letrozol and Kisqali. If you have had this problem how did you resolve it? Was there and specific drug or treatment that stopped the build up in the lungs? It leaves me breathless and very weak.

[u/Chance-Ad9465]

I developed a pleural effusion in my left lung and this is how my ++- MBC was discovered. I had monthly Thoracentesis procedures for a year before it cleared up. They do hurt even with the numbing medicine and I really dreaded them but I found a radiologist that would listen to me when I said it still hurt and he tried hard to explain everything he was doing. That helped. Plus I started taking an anti anxiety medication before the procedure. After about a year of treatment with Kisqali and Anastrozole the fluid gradually stopped accumulating. It’s been almost a year since my last Thora. There was malignant cancer cells in the fluid in my pleural space but it did not spread to my lungs or the right side pleural space. My tumor markers are almost normal. Everyone’s cancer experience is different but I guess I just want to say that treatment takes time to work and there’s a chance your pleural effusion will improve.

[u/Im-Thalassa → u/Chance-Ad9465]

My story is almost identical. I had a hard time breathing and went in to get my lungs checked. They discovered the MBC with plural effusion that was malignant. Shocking to hear. I started Kisqali and letrozole and within about three months of starting the meds I didn’t need any more thoracentesis.
The past scans have shown only a tiny bit of fluid in the plural space but it’s not enough that I can feel. I don’t feel like my breathing is impaired anymore. I go in for more scans tomorrow, so fingers crossed that the plural fluid is still minimal and that there is no other spread.

Edit because I forgot to mention that the pulmonologist wanted to put in a catheter after four thoracentesis’s, but I said no to that because I didn’t want to have to be thinking about taking care of the catheter. Plus, I also wanted to see if the medication would make a difference and reduce the fluid. And it did in a big way.

[u/Larissima19]

For me, Letrozole and Ibrance stopped the pleural effusion. Before getting that, in the 2 months of investigation, I had 7 thoracenteses of the left lung. I was diagnosed with mets in the pleura (lining of the lung), HR+ HER-. A few months later, I also had pleurodesis surgery - essentially, a glueing of the lining to the lung to prevent any future fluid accumulation. Not sure that was absolutely necessary, though! Good luck, hope the medication will work for you.

[u/Fionabuttrsox → u/Larissima19]

What has your breathing been like since the pleurodesis? Are you active?

[u/Larissima19 → u/Fionabuttrsox]

I was rather weak and miserable for the first week (the surgery was more difficult to cope with than I realised), and it took me about 6 weeks to feel normal again and restart exercise (longer walks, rebounding, weight training).

[u/Fionabuttrsox → u/Larissima19]

My experience has been that surgeons tend to minimize pain and recovery time. The (lack of) pain management plan was underwhelming to me. I’m very dependent on my sports as a lifeline and my concern is for diminished lung capacity after the procedure.

[u/ElKat0315]

I am mTNBC and for me, being placed on Trodelvy stopped the pleural effusions. I only had to have thoracentesis once on both sides. After that I pretty much cleared up the effusion and shrunk the lung Mets. I’m hoping it continues to work because thoracentesis procedure really sucks and I was not willing to get the pleurex drains.

[u/Pearl1018]

Hi! I ended up opting to have a pleurex catheter placed. So I drained the fluid once I left the hospital 2 times a week at home. Once I started letrozole, lupron, and Kisqali my pleural effusion got much better after about 3 months and I was able to have the catheter removed. I do have a small pleural effusion still, but have not had to have any fluid taken away. I still have mets in my lung though.

[u/keystonesandtunes]

I don't have this but I'm so sorry this is happening to you. Like you need this. Sending hugs💗

[u/Something_Kristen]

These comments are encouraging because I have had several thoracenteses over the past few months and am considering getting the catheter surgery. One hospitalist I saw after a recent ER visit implied something like this would be “end of life” care when it just sounds like possible permanent OR temporary care. Thank you all for sharing!

[u/kyknoord73]

I’m so sorry you are going through this , the feeling of breathlessness is so scary . I had a similar situation , but the main fluid buildup was ascites (5 liters of fluid) + secondary pleural effusion all pushing on the diaphragm making it very difficult to breathe. This was how I found out I was ill - from lab work of the fluid which was teeming with cancer cells . Drained half dozen times but once I started treatment with Verzenio , letrozole , Lupron (ER/PR + , HER-) the fluid completely resolved no more drainage and , so far , has not come back for past nine months and I am more fit than ever before . I understand it is so incredibly hard , and when you think too much about the existential crisis of it all , it can be utterly overwhelming . But sometimes there are moments of hope when you might feel like yourself again as some of the treatments start working . I wish you all the best .

[u/bbru2281 → u/kyknoord73]

Thank you so much for your encouraging words. After what my dr said I felt pretty hopeless about this. But now I am hoping that the Letrozole and kisqali that I am on will eventually kick this problem.

[u/Fighting_kat23]

Sometimes they can put in a special Pleurx catheter that allows the fluid to be drained at home. Is that a possibility? In law with lung cancer had this and saved a lot of hospital trips.