Referral to a Lung Specialist

I met with my medical oncologist last Friday–she handled the chemo side of treatment. She confirmed that the PET scan showed the cancer is all gone, which was good to hear again since it can be hard to believe. She also said we’ll do three month scans for quite some time and stay vigilant, which was honestly even better to hear. This is a long game, not a short one. When I hit the two year mark and it hasn’t come back, maybe I’ll relax a little.

She also decided to cut out the middleman and refer me to a pulmonary clinic for ongoing treatment of my lung. I went to the lung specialist yesterday. He was very thorough–took my whole history (both cancers), examined me, had me walk around with an O2 meter, said “Hmm…” a lot. He sent me for a lung X-ray to check for fluid and “just to be careful.”

I hadn’t expected any kind of scan so I sat in the waiting room trying not to cry as the fear of what it might show slowly bloomed. The lung doctor said he’d call with results and then call in steroids unless I needed to have fluid drained.

He called this afternoon to say the X-ray showed the “same patchy areas” that were on the PET/CT in March. That sounded like good news–I mean we already saw that and it’s radiation inflammation, right? He then said he would message both my radiation and medical oncologists to “see if they want another CT” and also confirm that they’re OK with him prescribing prednisone.

I hadn’t spoken with my radiation oncologist since he told me to let him know if it got worse. I was also feeling nervous about that X-ray even though it’s illogical. I told him about the lung specialist and the X-ray, along with my worsening symptoms. He responded right away and reaffirmed that it’s radiation pneumonitis, that prednisone is in order, that it should be a very high dose (60 mg) at first with very slow weaning.

Then I looked at the side effects of high dose prednisone: face swelling, wrecked immune system, severe bone loss, diabetes, weight gain, insomnia, rage, and psychosis. Yikes–really? Any hesitation went away when I had a coughing fit from getting undressed (bending over is the worst) that lasted for several minutes and scared the shit out of me because there were moments I genuinely wasn’t sure I could breathe at all.

So screw the potential side effects. I apologize in advance for any psychotic behavior. Bring on the steroids (hopefully starting tomorrow or Saturday).

Related Posts

Be Your Own Advocate

I routinely encounter folks dealing with serious illness (mostly cancer, in my circumstances) who accept whatever the first doctor they meet tells them, even if what they’re told is that there is no hope. I

Read More »

Head and Neck Cancer Awareness Month

April is head and neck cancer awareness month! Be aware of the causes and symptoms, summarized in the graphic at the bottom. For me, it was a swollen lymph node below my jaw that didn’t

Read More »

Clinical Trial Math

Clinical trial math example: Monday + every two months = time to start worrying about my scan the following Monday. Tuesday + pain below my right ribs = worry about that AND the scan the

Read More »

My Best Days Are Ahead Of Me

Last year, I was in the hospital from chemo for my birthday, not knowing the cancer would blossom again months later. This year, I’m walking around San Francisco–short of breath sometimes, but walking–looking forward to

Read More »

Unpredictability and Patterns

The every-other-week treatment schedule has become habit at this point. In at 7:45 am, IV and blood draw, discussion with the trial nurse, meet with Dr. Ani, get the blood test results, then infusion and

Read More »

Speaking Out and its Price

I’m exhausted and stressed and sad and angry. I try to keep my posts here focused and positive, but it’s really hard at this point. I was contacted last week by the Organizing Director of

Read More »