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mollie59
@mollie59

Posts: 18
Joined: Jul 16, 2017

NETS tumor in the plural sac around left lung

Posted by @mollie59, Fri, Mar 2 3:48pm

Hi, I was diagnosed with NETS last May. Since I have had open heart surgery to replace the two valves on the right side of my heart due to the carcinoid. Surgery went great, however 2 days later a carcinoid storm caused my body to crash. 10 days + I was in ICU and 10 weeks of dialysis due to renal failure caused by the storm. However, I have been battling the reoccurrence of fluid in the plural space surrounding my left lung. Thoracentisis on Dec 12, Jan 4, Jan 11, with removal of 1.2+liters each time. On Feb 23 I was referred to the pulmonary doctors, (after having a CT scan) I underwent a plueroscopy of this space. 1.4 liters tapped, biopsies taken, and a drainage line put in so I can drain it each morning. The goal is for 30 days. Today I learned the fluid in this area was negative, but the biopsies are positive for NET tumor. I will speak to my oncologist next week for a plan. My liver is full of carcinoid and I am trying to find any information on cancer in the lining of the plural space, not cancer in the lung. Please help me……I am hoping this weekend I can regroup and be ready for the next fight…..carcinoid is so mysterious. I am doctoring at Rochester Mayo and am new to all these "rare" findings. Is there a preferred scan? Or treatment? My kidney functions are returning, but I'm afraid to go back to dialysis! Thank you

REPLY

Hello @mollie59

I appreciate your post and your update on your health. Here is a website that will be helpful to you, https://www.carcinoid.org/. It will tell you about a lot of diagnostic tests that are available to you as well as different treatment options. I'm so happy to hear that you are being treated at Mayo. You have some of the best doctors on your side!

I believe that you have voiced a fear that many of us with NETs have – the fear of a Carcinoid storm resulting from major surgery. I admire your courage as you face the ongoing treatment.

I will be praying for you and wishing you well. I look forward to hearing from you again, Mollie.

Teresa

Hello @mollie59

Earlier this month you were discussing fluid in the pleural space surrounding your left lung. I was just wondering how you were doing with that? Are you feeling any better now?

I look forward to hearing from you again.

Teresa

@hopeful33250

Hello @mollie59

Earlier this month you were discussing fluid in the pleural space surrounding your left lung. I was just wondering how you were doing with that? Are you feeling any better now?

I look forward to hearing from you again.

Teresa

Jump to this post

Hello! Just thought I'd take a minute and send an update. I was at Mayo for some tests, scans, and a consult with my doctors. My echo showed my heart was improving and getting stronger with each visit. My MRI showed the carcinoid cancer to mainly be contained to my liver. As for the carcinoid they found in the plural sack around my left lung; we are just going to take the wait and see approach for now . Because this cancer was so small we felt we could continue to watch it for any changes. They were able to remove the catheter from my chest, I am just feeling better from that procedure. It is sore around my shoulder blade area and tire easily, but I do feel improvement. Happy to have no more draining and only a 10% chance it would return. First time I can say I've heard " return in 3-4 months" and be so excited!!

@hopeful33250

Hello @mollie59

Earlier this month you were discussing fluid in the pleural space surrounding your left lung. I was just wondering how you were doing with that? Are you feeling any better now?

I look forward to hearing from you again.

Teresa

Jump to this post

Hi @mollie59

That all sounds very good! Thank you for the update. I'm sure it feels good to have the catheter out of your chest. The wait-see approach is very common for NETs.

Take care of yourself. I look forward to hearing from you again.

Teresa

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