Small cell lung cancer: How often do you get surveillance testing?

Mine was NSCell cancer, stage 1. Had the entire lower left lung removed in August 2021, all margins clear and all lymph node clear, Thank God! For the first 2 years I saw my oncologist following CT with contrast lung scan and blood work from their lab every 6 months. From here out, I still have my next apt in 6 months, then will see if still clear, I can go once per year, after the 5 year limit, my oncologist said I would have a low dose CT lung scan annually, and that could be with my primary care doctor for 15 years, not sure I am comfortable with that? But I also have COPD so I will have them read my scans as well. Time will tell as my oncologist is leaving this practice in January and I will be seeing another oncologist and will follow her reccomendations. I just hit my 2 year 'surgical cancer free' never had chemo or radiation. Best of luck to you.

Hi @tymish17, I'm tagging a few fellow members living with small cell lung cancer like @joe6767 @mustangdee64 @alcott @daisy9460 @vlpr so that they can share their outcomes of treatment, side effects they manage and what follow-up schedule they have with their cancer team and/or PCP.

@tymish17, how are you doing? How often do you have surviellance testing?

For the first 2 years MRI of the brain with contrast, CT of Chest and Abdomen with contrast. After 2nd year (where I am) CT of chest every 6 months.

Originally I was found with stage 1b and severe copd. Treated with SBRT for two tumors. Scanned every 90 days for two years and found another tumor treated with SBRT. Scanned every 90 days for three years then every 120 days until another tumor emerged and now back to 90days. Good luck with your therapy!

@pjmen59, it is common after the initial follow-up for a year or two that care is transferred to one's primary care doctor. I can understand your apprehension after having had specialized cancer care from diagnosis through treatment and follow-up. Since you've been with you PCP for 15 years now, do you think you could have an open and frank discussion with them and share your apprehension. They could explain what their protocol is with informing the oncology team and also what role your own personal "surveillance" is in monitoring your symptoms, the cross-over symptoms of COPD and what to watch for, etc.

Do you think your PCP is open to frank discussion like that?

This is VLPR (Vickie Rose). I was diagnosed with SCLC July of 2022 - stage 3b. I've had CT scans of abdomen, pelvis and chest along with MRI of brain every 3 months. This fall 2023, my brain MRI showed a small lesion in the balance area of the brain. I had a Gamma Knife procedure (look it up, Mayo has a great explanation) to kill the DNA of that lesion. It shall go forth no more. I am now considered stage 4, but am still being treated like 3b. I am having CT of abdomen, chest etc. and MRI of the brain every 2 months now. Next up on Nov 3. My husband is requiring quite a bit of care right now so I'm doing double duty. Feel like I did when I had a young family and a sick husband. I'm sure he will improve. It's great that I'm feeling good and can take care of him. We take turns at our house. 🙂 Sorry it's taken so long to get back to you. vlpr

You sound amazingly strong.

Since finding a lesion in my brain 2 months ago, I'm on a 2 month scan regimen. My husband of 55 years has been in the hospital for over a week. He came in with heart and kidney issues. However he became delusional 4 days ago. He yells 24 hours a day. This and SCLC is way too hard. I'm having my scans today. Have not gotten down until now. Trying to bring myself up and stay positive.

Oh Vickie, @vlpr, I’m so sorry to hear that your husband isn’t doing well. I hope your scan report included good news and the cancer remains stable for awhile now. The roller coaster of scan schedules is a hard enough, without the additional stress of a caring for your husband, especially when he isn’t himself and can’t support you.
Do you have the support of family or friends? What do the doctors believe may be causing his outbursts?

Lisa, Thank you for your kind words. Yes, I have family support. My husband has been transferred to the ICU unit. The doctors have no idea what is causing the dementia. He no longer knows us and does not respond accept to pain. The doctors are checking any possible avenues no matter how slim a chance they are causing this. They are baffled. My daughter and I will be to see him today again. My son and family are coming from Texas next weekend. (We live in FL) My son came last weekend while my husband knew him. That was great. He also saw the transition to the delirium.
I have phone contact with my husband's brother as well as with mine. My MRI report from Friday 11-03 was good. I have not received the CT report which is a bit concerning. I will see my oncologist on Monday. Hoping for some good news. Thank you again. vlpr PS: We are lucky to have Mayo Clinic in Jacksonville, FL where I live.