Sarcoidosis or Cancer

[Leigh222]

I should have explained that my surgeon isn't certain I have lung cancer. Positive PET scan, node doubled in size over 3 months, and is "spiculated " margins. The confusion is that I have sarcoidosis in my lungs for 20 years and they don't know if it's that or cancer. Two needle biopsies were inconclusive .. guess they didn't get the lesion. So. I'm very scared to go for a resection or lobectomy not knowing if it's cancer .. anyone have experience like mine or input., thank you so much!

[cmmack90]

I was first diagnosed with sarcoidosis in 2004 in my lymph nodes by my sternum. Then in 2008, I had a tumor in my right upper lung, which they were sure was cancer, so they went in and removed that lobe, and it was cancer. However, since then, I have had several biopsies, and the "spots" were sarcoid. They even removed my spleen, thinking my cancer had spread, and it was sarcoid too. In 2013, cancer was again discovered in my right side, middle lobe. As they didn't want to remove the entire lobe, they did a wedge resection. I thought we were done. Then a year later, it was learned that my cancer had metastasized into a little marble in my abdomen and some small bumps on my scalp. These bumps hurt like crazy. At the end of last year I had radiation on my abdomen, and that killed my "marble", and the beginning of this year they used the same radiation on my scalp. That was scary, as I am claustrophobic, however, with singing prayers in my head during treatment, the bumps disappeared, along with the nasty pain. I lost quite a bit of my hair on the top of my head (my style is very much like St Francis of Assisi) and I was told it will probably take about 6 months to grow back, but I figure that is a small price to pay. But, yes, having sarcoidosis of the lungs is a total drag when you have lung cancer. I have had wonderful doctors, and ones that tried my patience. I am an extremely patient person, unless you drag your feet in my cancer treatment. Oddly enough, I have never felt afraid, except when I am laying there in the operating room, ready to take a long nap. It's always so cold in there. I am happy to answer and questions you have, but I don't know that much, but I'm still alive!

[Leigh222 in reply to cmmack90]

Thank you so much for taking time to write to me.. much appreciated. It sounds as though you've had more than your share and I pray that you'll be strong and well. I guess I just have to trust these docs, even though they're doing surgery without a confirmed biopsy. Again... take care.

[Ozzie518 in reply to cmmack90]

I was diagnosed with Sarcoidosis in February 1993, via mediastinoscopy. I went into remission in 1996. I have had no recurrences with Sarcoidosis for 25 years, getting monitored annually w/chest x-ray & eye exams. Recently, during the past 6 months, I have developed a chronic cough. I went to my VA doctor, had a chest x-ray which showed chest masses, and a CT Scan was ordered. After the CT scan, multiple nodules, nodes, and 2 masses were discovered- one in upper right lung 2.7 x 1 cm, and a 13mm node in my upper left lung fissure. The pulmonologist ordered a PET Scan which I had last week. This showed a SUV of 12.5 in my upper right lobe mass measuring 2.7 x 1 cm, and a SUV of 6.5 in the left lung nodular density, with axial dimensions of 1.3 x 0.7 cm. I also had numerous nodes and nodules in my lungs, paratracheal left lower lymph node 1.7 x 0.9 cm with a max SUV of 5.3. In addition, I have subcentimeter lymph nodes within the small bowel mesentary. I have an appointment with my VA pulmonologist on Friday and I am very concerned. The PET Scan eludes to possibly having active sarcoidosis, but the upper lung masses cannot be identified. I am hoping for biopsies as the next step, so I will hear what she has to say and hopefully will not try to try steroid therapy prior to the identification of the lung and abdominal mass/nodes. Thanks for reading and I hope that you are doing well. Thank you for any suggestions.

[Spainy]

How about a second opinion? The surgery can't be undone.