Lung Cancer Support Group

I am a 65-year-old former smoker - I quit in 2003. I was diagnosed with NSCLC in Novermber, 2008, and had a right upper lobectomy on December 18, 2008. I suffered a pulmonary embolus 3 days after surgery, which set my recovery back quite a bit. I was in the hospital for 13 days and in a rehab facility for another 10 days, then sent home on 24-hour oxygen.

I finally weaned off the oxygen in March, and went to my oncologist for a routine 3-month follow up visit after my lung surgery. She said my tumor marker blood work was fine, as was my x-ray. Good news. I asked her to look at my right boob (surgery side) because it was swollen and red and warm (I suspected Lymphedema, silly me). She immediately flew into a frenzy and said I had to see a surgeon, have a mammogram, ultra sound, and MRI immediately and that if this was what she thought it was, I would be in the chemo chair within the week. She suspected inflammatory breast cancer, which is aggressive and has a poor prognosis. Scared me to death. I had all the tests and saw the surgeon that week. The radiographic tests were inconclusive, and so was the surgeon. They simply could not say one way or the other what it was; just that it was abnormal. The doctors put me on antibiotics to see if it got better, in which case it might just be an infection. I was on them for 28 days, and did note improvement, but not resolution. The oncologist then said it couldn't be IBC because that doesn't get better. But still no cause identified, and symptoms remained. I don't do well in an "I don't know" state, so I called and went to see the surgeon again, and asked him what he would do at this stage if it were his wife. He said he would recommend a tissue biopsy and removal of a "knot" that had developed in my incision line. He suspected the knot might be a source of infection, but in any case he wanted to know what this was so he could make a better decision about treating it. I should mention that I had a Urinary Tract Infection in the hospital in December, then a superbug-Ecoli. After I got home, I developed Strep A in my chest tube incision and in an old IV site. So the potential for a persistent infection was there.

The biopsy procedure was done on 6/11/09 under twilight sedation due to my breathing issues and the result was no cancer! Hallelujah!

Meanwhile, I started Pulmonary Rehab at a comprehensive local health center and was in my 2d of 8 weeks when I experienced the same kind of back pain I had when I had lumbar stenosis followed by a lumbar laminectomy and fusion of L-4/5. This time the pain was on the opposite side, and pain pills did not relieve it. I called the neurosurgeon and her nurse called in a dose pack of Prednisone for me. I began that and got no relief. The Prednisone shot my blood sugar up, so I had to start on Metformin for that. My neurosurgeon, after trying me on Vicodin, had me get an MRI, thinking, as I did, that the problem was probably skeletal. Not in my wildest dreams could I have imagined what it was.

It was a metastatic tumor on S1, or the sacral area of the lower back.

The waiting, worrying, and now the pain are threatening to get to me! I’m now into my 9th month since the lung cancer diagnosis. I was thankful that my lung tumor was found before any spread, but it seems that the latest tumor just didn't show up before; maybe it was too small. I had to repeat all the nuclear scans again along with blood work, and two more tumors were found - one on L3, and another in my liver (8 cm).

I have now had radiation treatments on the sacral tumor compressing the S1 nerve with no relief. I've been on down the pain meds road with Percocet, Dilaudid, and Morphine, with no relief. I'm now on a Fentanyl patch with Morphine for breakthrough pain, and, you guessed it, no relief. Normally such a dose of pain meds would put me straight to sleep, or at least have me wobbling! I am fully awake and not the least bit woozy. I can sit or lie down without pain, but I cannot stand or walk for more than about two minutes. I started radiation on the L3 tumor on Thursday and will complete that on July 15. I have had an infusion port placed in my chest, and I will begin chemotherapy on July 9 (next week). My breast is acting up again with swelling, redness and warmth, so the oncologist is now wondering whether lung or breast might be the primary site. I think she's decided it's lung, based upon the opinion of the pathologist who relooked at the lung tumor taken out in December.

I keep saying to myself, “the glass is half full” and “God is always good”, but, as important as it is, I am finding it hard to be positive. I know that I'd have to get better to die, so that's not a worry at this point. But I have concluded that aging isn’t for sissies!

Aside from the excruciating pain, I really don't feel bad. If it weren't for the pain, my activity level would probably be like it used to be. However, I know that my prognosis isn't good. I don't know how bad it is. I'm not really sure I want to know that. I do know that I need support, and I thank you in advance for that.

Shelley
Posted on 07/03/09, 09:07 pm