Second and Third Opinions

September 27, 2008

One week after the initial surgery on the right lung, I had another surgery on the left lung. The first surgery was difficult, I hadn’t realized how painful thoracotomies were. It was difficult to take a deep breath and everything in my chest hurt. That made the second surgery more frightening. They would do more, take more tissue, a whole lobe; would that make the overall pain worse? I was so afraid; yet determine to rid my body of this cancer.

After the second surgery, I returned the the medical oncologists. He seemed unhappy that I had not taken his advise and decided to go on with surgery. He told me it didn’t change the fact I still had stage IV lung cancer, and now would delay my treatment. I remember him telling me “who knows if you still have cancer to give chemo to”? as if not having cancer was a bad thing. After a few more visits with him I realized he truly didn’t believe I had a chance of winning this battle. I told him I couldn’t be the only one who had hope of survival and, therefore, he could be my doctor any more. He was fired.

I saw yet another medical oncologist, who did offer treatment, but still without much sediment of hope and I only saw him once. Then in early November of 2001, I met my oncologist I still see. Dr. David Carbone. He offered encouragement, hope and options. He wasn’t afraid to allow me to have hope while in his presence. He has proved to be my best encourager, and not only has been successful in treating me, but he has taught me how to live with cancer.

Straight away, Dr. Carbone explained that I had stage IV lung cancer and that it was incurable. However, he almost in the same breath added, that “incurable doesn’t mean untreatable“. He went on to explain that many diseases are incurable yet are successfully treatable: hypertension, diabetes, congestive heart failure. He said I was healthy now and he goal would be to keep as healthy as possible for as long as possible. He wanted to keep me alive long enough to die of something other than cancer, adding that he knew I would die of something sometime. We all do.

Early in 2002, I started chemo, taxol and carboplatin with a clincial trial drug, ABX-EGF; and that continued for most of 2002. I stayed stable during the entire year. It now sounds easy, but it was a difficult year- a typical chemo year. It was successful though, for lung cancer stable is success. No change in the cancerous tumors that still resided in the right lung.

At the end of the clinical trial, I decided to have another surgery to remove the remaining cancer. Dr. Ninan once again did the surgery removing nodules from the right upper lobe and right lower lobe. It was just before Christmas in 2002.

I was cancer-free, or NED (no evidence of disease) for almost a year and half. Then, we discovered new nodules in the left upper lobe. The recurrence was hard. This time I knew lung cancer. The denial thing didn’t happen, but the fear was just as great, if not greater, because I knew the cancer was relentless. It liked my body; it liked my lungs. And the recurrence deminished my hope of the cancer just not ever coming back. It was back, and it would continue to come back, no matter how hard I tried to wish it away.

I agonized about what to do. This time the medical oncologist favored surgery. It seemed the surgeon was somewhat more relunctant and I was unsure why. Later I would find out, he was pushing me to exhaust all other options. Each surgery increases your chances for a bad outcome and it was obvious we couldn’t keep doing more and more surgeries. Yet, after extensive research, surgery seemed my best option.

In May 2004, I had my 4th thoracotomy- this time remove a large segment from the left upper lobe. The left lower lobe was already gone; anatomy had changed. Post-op we had trouble getting the remaining left upper lobe to remain open and inflated. It was a very difficult and painful process and my most difficult surgery. I had chest tubes for nearly 3 weeks, and even began to think I had made a fatal and devastating choice. However, after a pleurodesis (where they do a chemical abrasion to lung tissue) the lung healed and I once again recovered.

Another 18 months passes with NED. Then another recurrence!! This time back in the right upper lobe. It was decided at this point, since the cancer had been in the same area twice before that we should just remove the right upper lober entirely. And there were two very small nodules in the right lower lobe again. In December 2005, just before Christmas again, I had another surgery, my 5th thoracotomy. Dr. Ninan removed the right upper lobe, a wedge off the right lower lobe and a small wedge from the right middle lobe. The middle lobe was cleared for cancer. The nodules in the right lower lobe were cancerous and, of course, the right upper lobe also was positive for cancer. My lung function at this point had been greatly reduced. I could now tell a big difference climbing stairs, I tired more frequently, everything I did took twice the effort. However, I was cancer-free again.

Scans at the end of 2007, 2 full years since my last surgery, showed new growth and once again a needle biopsy confirmed it. New cancer was growing, again, in the left upper lobe, or what is left of the left upper lobe. This cancer is relentless but it was small and appeared to be slow growing. I had time to make wise decisions and look at all options.

It was a time for big decisions. Lung tissue does not regenerate. What is lost is gone forever and you cannot remove all of your lung tissue and still breathe. We had to find another way of dealing with new growth; Contain the cancer, AND preserve lung tissue. I made appointment with new doctors, wrote emails, called physicans acrossed the country. Many doctors recommended trying chemo or clinical trial drugs again, however with slow-growing cancers they are not very benefical. Surgery removes too much normal tissue along with cancerous tissue. You can’t just cut away the tumor, you lose everything beyond the tumor and I am now short on lung tissue. Radiation causes just as much tissue damage as surgery, just without the risks of surgery. A choice, just not a great choice at this time.

That is when I began to seriously look into a treatment I had been interested in for a while. RFA- radio-frequency abalation– where they insert a catheter and heat it up and actually burn the cancerous tumor, leaving normal tissue alone and scar tissue over the cancerous part. Plus, this treatment didn’t keep me from doing any of the other treatments if we thought it wasn’t working. The only problem was, it wasn’t being done at Vanderbilt-where I was being treated. So, in February of this year, 2008, I went to UCLA and Dr. Rob Suh did the RFA treatments to two places in the left upper lobe.

And so here we are, 6 months later. 7 years since the initial diagnosis and all is well! ALL IS WELL!!! The RFA treatment is holding well, I’m still NED (as far as I know at this time) and we are watchful and waiting. It took a full month to recouperate from the RFA treatment, but for cancer treatments it was the easiest I’ve had so far. We are looking at a new place in the liver, but I don’t think it is anything-I think, sometimes, cancer patients find things that normal healthy people would also have (like little spots on the liver) if we looked at them all the time, too. So at this point we are waiting and will re-evaulate later.

All is well.