Small Cell Lung Cancer: Let's connect

Thank you for starting this discussion, Merry. I was just diagnosed with SCLC. A PET scan showed a spot in my left lung, nodes and 3 spots on my liver. A liver biopsy confirmed the diagnosis. If you smoke or not, if you ever smoked, if you worked in an industry tgat coukd cause lung issues, if you are over a certain age, insist on at least a low dose CT!! I had a cough for months doctors just attributed to smoking. This was not a smoker's cough. My doctors were unfamiliar with LDCT and none available in my area. I knew of this because my cousin's doctor, in NC, has had her do them for 3 years. I kept after my Pulmonologist who would just respond to quit smoking. Finally, he says, "I will order a CT, if it will make you feel better, but it probably won't show anything." Had the test and get a call to call his office ASAP! By now, this had been going on for about 4 months! So, now I am in the nightmare of urgency. He tells me to start treatment or I am going to die. I can't even get into see an Oncologist here until next week. I called Stanford and will get a call back in 2-4 days. I would like to know if anyone has been treated at Stanford. Any feedback would be greatly appreciated!

Even though I have been posting on another segment of this forum I would like to join in here since I have SCLC, stage 3b. I finished chemo/radiation at the end of Oct. I tire easily, but am able to manage light daily task. Thank goodness my sweet husband is keeping things running smoothly. I beat breast cancer & a recurrence years ago. Hoping & praying to beat this cancer too.

@ladylake- I was trying to think of your name and couldn't! welcome

I look forward to reading comments from others who have SCLC. The aggressiveness of it is scary, but so far the scans show that it has dimished & has not metastasized. My oncologist & radiologist will monitor my situation long term since there is no cure (so far).

Happy you have joined, lady. I am Stage IV now with nodes and spots on my liver. Brain MRI was clear, so far. If the doctors had listened to me for months, maybe this would have been caught sooner. I haven't even seen an Oncologist yet! Praying we can all beat it. Were you sick from the treatments and where were you treated? Since this is a Mayo discussion board, I assume there.

I went to Mayo in Jacksonville, FL for lung biopsies, bronchial test & brain MRI after CT scan here showed small tumor in my right lung. After prognosis the Mayo doctors recommended the chemo\radiation protocol. Then I came back home to central FL for my oncologist & radiologist to perform the treatments. While at Mayo they discovered with the brain MRI test that I have hydrocephalus, water on the brain, but no metatasic problems. Now will have to have a brain shunt permantly placed to keep the fluid drained off. I will probably go back to Mayo for that procedure. Am already presenting problems with walking due to the hydrocephalus. Without the shunt there is a strong possibility of demintia & incontinence. Getting old is not for sissies.

Oops! Sorry I forgot to answer one of your questions in earlier response. The chemo/radiation combination never made me sick, just very tired. Am still fatigued, but getting better. My oncologist gave me anti nausea medicine in the IV. Twice in between chemo sessions he ordered special IV liquid for hydration.

Thank you. Wow, didn't know that could happen to the brain. Glad you are able to do treatments closer to home. Being in the Central Valley in Ca, the Bay Area is closest to us but can be hell commuting. I am not seeing anyone saying their's has spread. I have nodes and spots on my liver.

Thank goodness the Mayo doctors were so thorough with the tests. Finding out early about the hydracephalus means that corrective surgery could reverse existing problems & keep other neurological problems from happening. Am sorry that you have such a terrible commute to good health care facilities. Bad traffic conditions are nerve wracking.

I am in a private e-mail with a few friends and they are not happy about the way this has been handled or, shoukd Insay, not handled. I feel like a fish flopping around in a sinking boat. One would think they would have a Patient Advocate to help. One woukd think the Doctor woukd sit down with you, explain what you have, possible treatments, suggestions where to go. Not Sutter Gould. Just send the patient a message she has a terminal illness and needs treatment ASAP. My PCP will be hearing from me, again.
Yes, that commute can be a bitch as you never know how traffic will be. I was a hour late for a GI appt over at Stanford one day. Get to the office and was told I could not be seen. I was so upset and said I was going to file a complaint. Took us about 3 hours to get there. We left and my cell rings and Tgey are telling me the doctor would see me. We were almost out of town but turned around.