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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.

TBC...

G

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Comment by Merry on December 29, 2013 at 12:19pm

Cas- Where did you hear that about upper lung cancer?

Comment by Christine32 on December 29, 2013 at 12:13pm

Thanks for sharing your journey  G.  Becoming an educated self-advocate is the single most important thing one can do to increase their odds of beating this deadly disease.   I noted with particular interest the use of "rotor-rooter" treatment to your head.  Being as how "rotor-rooter" is the treatment of choice for clogged waste disposal lines (i.e. "shit" chutes), I applaud your doc's astute assessment of the composition of your "head" and selection of appropriate mode of treatment.   However, while I celebrate your 14 yrs NED for LC, I am concerned with the residual BS that was apparently missed during the procedure. 

Comment by Merry on December 18, 2013 at 12:44pm

G- This is a fantastic story. I fully agree that you have to advocate for yourself.  What is WBR?  We need a link to medical terms!!!

Happy holidays form a 16yr to a 14yr!!!  :)

Merry

Comment by stage4survivor on December 17, 2013 at 5:43am

I was asked to elaborate on "listening to your gut"...not a simple task and a phenomenon likely bordering on the metaphysical.

While sitting in Dr. Kellys' consultation office discussing my case, time slows down in the midst of the conversation, my thoughts focus on the predicament and why exactly I'm sitting in this distinguished office on the 10th floor of Langone. Not happy to be here BUT, my "senses" told me this was where I was supposed to be at that precise moment in time.

After this brief reverie, I simply asked for his earliest OR opening and my plan to cancel my consultation at MSKCC.

5 days later I had a hole saw and roto-rooter used on my head. Oddly, I never felt any fear, I was annoyed by the disruption in our lives.

I knew precisely what we were dealing with and the proposed battle plan. I had the utmost confidence. This was absolutely fascinating.

I also KNEW given the best of outcomes I'd be dead within 2 years...tops!

As Roman proposed...cure me??? Don't try to peddle that BS to me!

TBC

G

Comment by CAS on December 17, 2013 at 4:51am

What a great post.. And what a great journey. I just learned from a recent study that LC in the upper lung area is more likely to spread. Like in your case the primary was really small but had spread. And Andeno is more likely to go to the Brain in younger women. But that being said I am learning to not be so afraid of mets to the Brain as I a have not met folks like yourself who have had them zapped and are doing really well 5,10,15 years out. So very glad for you and please keep telling your story. 

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