Wife was diagnosed with lung cancer 4/11. Lobectomy (upper lobe, right lung) 6/11. Recovery slow but apparently normal except for persistent cough which exists even now. Routine follow-up CT scans all negative.
In 9/11 she underwent a parotidectomy to remove a tumor and part of the parotid gland. Pathology reported as “unknown” but suspicious. Regular follow up by head and neck surgeon indicates all remains normal.
In the summer 2012, meds changes to control cough and excessive swelling of feet and legs resulted in runaway high blood pressure. Multiple changes with a combination of BP meds were all to no avail until a switch back to original BP meds brought the BP under control. No further BP problems have occurred.
Since 10/12 she has been plagued with a worsening cough, shortness of breath(SOB), fatigue and swelling of legs and feet. On 12/7/12 she was referred to a Pulmonologist and has undergone ultrasound of heart & legs, CT scan, echocardiogram, two thoracenteses, PET scan, sniff test, nuclear stress test, bronchoscopy, etc.—all negative.
In 2/13, Pulmonologist and lung surgeon consulted regarding the possibility of a 2nd surgery to check for pleural studding. Surgeon did not consider this a good option given the difficulty and risk of another surgery and her poor pulmonary performance—i.e. high risk, low reward.
On 3/4/13 a PleurX catheter was implanted and since that time, we have been draining 500 ml every other day, resulting in a protein deficiency and increased swelling of legs and feet. The draining, of course, helps with the SOB but we still don’t know the cause of the fluid buildup in the pleural cavity so we don’t know what to treat. I forgot to mention that she has been on oxygen full time since bronchoscopy on 2/12/13.
After this long history, the question is what is the most likely next step and would there be advantages in the consideration of treatment at a cancer center such as Duke University, Mayo Clinic, or M.D. Anders
Reply # - April 17, 2013, 12:21 AM
Reply To: Next Step
I'm sorry she's having such a difficult time.
Any time you don't have a good idea what's going on, a second opinion is a very appropriate idea, especially one from someone or a team of people with a particular expertise in the cancer in question. One option that might be helpful in this situation is a pleuroscopy, essentially putting in a laparoscopic camera to see whether there is studding of disease outside of the lung, and a biopsy could potentially be done at the same time. If it's clarified that this is from recurrent lung cancer, then systemic therapy (i.e., chemotherapy or a targeted therapy) could potentially reduce the volume of pleural fluid being produced, perhaps even stop it. Another alternative to shut down the production of pleural fluid is a pleurodesis procedure, which you can read more about if just do a search of the website.
Good luck.
-Dr. West
Reply # - April 17, 2013, 09:32 AM
Reply To: Next Step
Hi Tomk, I'm so sorry your wife is going through such difficult episodes. This is such a nasty disease. We have a terrific educational library you can access through many avenues; "general cancer info", "focused cancer info", FAQ, and our search engine is very good. Note that for the search engine you may need to log out before preforming a search, it depends on your internet browser.
This is an excellent primer on second opinions. There are many reasons for getting one. http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
This is an answer to a question very much like yours.
"The idea of talc pleurodiesis is that the talc should irritate the surfaces of the 2 linings of the lung, making them stick together. When stuck together, it's hard for fluid to accumulate in the space between them. While success rate is high, it is not 100%.
When the procedure fails and fluid reaccumulates, you can definitely drain it. You then need to consider what, if anything, you're going to do to stop the fluid from coming back. Options include repeat pleurodiesis or chronic drainage (you can leave a small tube such as a pigtail in place that can be drained at home, as needed, to palliate shortness of breath).", http://cancergrace.org/forums/index.php?topic=10612.0
The very best of luck,
Janine
forum moderator