Lytic lesion

[SteveR]

Was diagnosed with stage 1a NSCLC in December 2018. Had a lobectomy with no further treatment. Fast fwd to June 22 when I had a pain in my hip that appeared very suddenly. Orthopedic doc said it was a soft tissue injury. CT however revealed a lytic lesion. In January my pelvis fractured due to the lesion. My pelvis was stabilized and the lesion was removed. Follow up scans indicate NED. 1 oncologist wants me to begin systemic therapy. Another says to wait. I'm not quite sure what to do. Targeted therapy is no available. Physicians keep telling me it's treated like a chronic disease. What does that mean. I'm only 55 years old. I want to live a long life. Is that possible? Thanks in advance!

[Tom Galli]

Steve,

Oh my!

Let me ensure I understand your treatment before answering your chronic disease question. You had a Stage 1A NSCLC diagnosis and surgical treatment in December 2018. Did you have post-surgical chemotherapy? You mention Targeted Therapy is no longer available. Was your resected tumor sent to a lab for biomarker testing? If so, can you recall type of mutated adenocarcinoma? Here is a summary of all the actionable types of adenocarcinoma to jog your memory. Was the pelvis lesion surgically removed? Was the lesion material sent for biomarker testing? Lytic lesions can be malignant or benign. Were you told which?

To understand your chronology, your initial diagnosis was December 2018. Was the onset of your hip pain in June 2019? Did the fracture occur in January 2020? Did you have any chemotherapy after your lobectomy or lesion resection? How many follow-up scans? Were you scanned once every quarter or twice a year? Are you still being scanned? If your latest scan was NED, why did your oncologist suggest systemic therapy?

I got to a point in my treatment where my doctor thought systemic treatment might be possible. I was receiving conventional chemotherapy in the form of Taxol and Carboplatin, hardened with a Targeted Therapy drug called Tarceva. This therapy was not eliminating my lung tumors but keeping them from growing. So the thought was I could be put on a long-term infusion schedule with the hope of controlling my active disease, not eliminating it. That long-term infusion process is what is referred to as systemic therapy. 

If you are now NED, I can't see the need for any treatment but screening scans to ensure you stay NED.

Stay the course.

Tom

[SteveR]

Thanks. To answer your questions the only treatment I had was radiation to my hip this past December. My oncologist wants to to undergo chemo and keytruda as a preventative measure. Lytic lesion was the lung cancer. It took 4 years to present itself. No other mets at all thank G-d. 

[Karen_L]

I urge you to seek another opinion. 

[SteveR]

@Karen_L Why do you think so?

[Karen_L]

You’ve had a significant metastasis and are receiving conflicting recommendations. Another opinion from a lung cancer specialist would offer another perspective, including more testing, which could determine a clearer path.

You don’t say what other testing your oncologist has done to assure there are no mets to the brain, or elsewhere. Have you had a PET scan, for example? Or a brain MRI? And, how do they know there are no targeted therapies for you? Why keytruda? What chemo drug? 

I’d want a lot more specific information before deciding I was comfortable with either path.

You might take a look at the guide to being an advocate for yourself— the links in my footer.

[SteveR]

@Karen_L MRI = no brain mets. CT and full body bone scan show no signs of disease. My metastesese was limited to 1 location after 4 years. Not a typical case. 

[Karen_L]

Lucky you! No PET scan, then?