Linking you to resources and support in the lung cancer community!
I was at the top of my professional career, in good health, "clean & sober" for some time, father of 6 yo twin sons and married to a solid, no nonsense babe when I had an episode of seeing a "Star Wars" visual snippet at 2 O'clock in my field of vision.
I knew this was a very ominous symptom but, hoped it was related to rare episodes of hypoglycemia(low blood sugar). Within a couple of hours, an MRI revealed an egg-size tumor in the middle of my brain and a couple smaller ones in the L parietal lobe. The scan was fascinating to behold despite being my own head!
By the end of the day, a chest CT revealed a 1cm tumor in the LUL. Initial impression suggested the lung tumor might be a "red herring" since the brain tumors were all larger.
I called Mrs G to let her know I'd be home early and why, in unflappable form she said OK, we'll get to working on this. I started gorilla doses of dexamethasone and dilantin. We both knew our way around the medical labyrinth and had "connections" at MSKCC, MDA & NYU.
I tele consulted with MDA after overnighting my MRI, also discussing NYU where the MDA neurosurgeon had trained.
The following week we sat down with Patrick Kelly at NYU, he's also a no nonsense kinda guy but, took his time. While talking, my gut told me this was the place to be and decided to cancel my consult with Gutin at MSKCC.
I told Dr. Kelly then and there. He scheduled my surgery the following week and personally took us down to introduce us to Roman Perez Soler in oncology.
Friendly, affable man who I strongly suspected was drinking on the job or thought the brain mets had made me stoopid when he proceeded to explain in great detail that despite being stage 4 lc with multiple brain mets, he planned to guide my treatment and send me home CURED! Yeah...right...I knew I had a year or two, at best.
I had stereotactic(rotorooter, not radiation) surgery the next week, out of hospital in 5 days then 2 weeks post-op had a pulmonary embolus. Classic symptoms, SOB, R stabbing chest pain, tachycardia. Everyone disagreed when the symptoms resolved within 24 hours...wait for it...
Got 2 doses of Carbo/Taxol which shrank the LUL tumor somewhat in preparation for chest surgery.
Pre-op work-up for a LUL wedge, chest CT now reveals "something new" in the R lung...remember? Wait for it...R VATS path confirms...pulmonary embolus...just like I told them! In all fairness, I was not a candidate for blood thinners since I was recently post-op brain surgery and would not have agreed to a "basket" aortic filter.
LUL wedge confirmed brain tumor pathology...adenocarcinoma.
8 months later on routine follow-up, large brain tumor regrew. Dr. Kelly insisted I see his colleague Dr. Golfinos for GammaKnife to retreat and zap the 2 smaller brain mets. I insisted on rotorooter again...his practice manager played the role of referee in this "difference of opinion". Dr. Kelly won this battle by TKO!
Well, truth be told, I won the war since I had G/K in November, 2000 and have received no further treatment.
Of major note! I was repeatedly "encouraged"( READ=full court press!) by Radiation Oncology to have WBR! I couldn't find ANY good news about WBR and refused.
I have learned much about lc in the past 14 years, it's a very rocky, mysterious road. You need to advocate for yourself, research, know the details, know the options in treatment, ask questions.
DO NOT rely solely on your docs, assert yourself. Half the docs in the US graduated in the bottom half of their class. Some won't discuss or even mention options they don't offer.
Case in point, if you have brain mets but, the treatment facility doesn't offer GammaKnife, consult a facility that does. DO NOT allow the facility to determine whether you're a candidate, ONLY those who actually use G/K should make that judgement.