My 46-year-old sister, who is developmentally disabled (slow), was diagnosed with SCLC (oat cell) in mid-September. The whole process of getting the diagnosis, consults, scans and biopsies, and port-a-cath insertion took much longer than I had expected, but that is another story. The oncologist, although a nice guy and good to his patients, is not very good at explaining or answering any questions. I did manage to get him to say she had limited stage and her scans did not show any mets outside of the chest but it was like pulling teeth. He wasn’t that concerned about staging, kinda vague really, as the treatment was the same. I was able to read the reports myself and have some medical background but not in cancer treatment. I am her court-appointed guardian and legal power of attorney for health care.
Finally got chemo started which is 3 days a week every 3 weeks. She is getting Cisplatin and Etoposide. Her 4th (and final round according to the doc) starts this week. Although it is ideal to do radiation at the same time, he didn’t want to because her counts went down after the first treatment and he said it would knock her socks off and make her too sick. I understand that. A few days before Christmas we had an appointment and I had more questions but he just out right told me “no questions today”. I was offended but I think he didn’t want to be so serious and spoil our Christmas Holiday. His plan is to finish the chemo this week, do a chest scan and we see him again on January 23 and then we’ll talk he said. – which I find frustrating because I don’t know if waiting this long in-between things is too long or normal, especially since we haven’t started radiation yet. Although the wait and not knowing what to expect seems excessive to me, I also understand that her body needs time to recover from the chemo too.
My big concern is that he is going to deviate from standard treatment with chemo and radiation because she is poor and disabled. At the beginning of this, he was talking about doing the radiation right after the chemo and now “we’ll talk” at the next visit. She has tolerated the chemo quite well and has even worked at her job except for the weeks she gets chemo. I know treatment needs to be individualized too but I can’t seem to find anything on the internet either in regards to how many cycles of chemo is standard. I noticed that many of you have received several rounds through the course of a year or 2. What is a normal cycle or round of chemo and radiation? We are doing 3 days a week every 3 weeks times 4 – which totals 21 days of receiving chemo Drugs. How often should scans be done? Is there a place to find the information? I have looked but can’t find anything specific. Basically, Sis wants to live and I want to make sure she gets the same care and treatment. I think the doc cares for his patients in his own way and he pays attention to quality of life (hence the delay on radiation) but I am not happy about not receiving the information I want. I do know that sclc – oatcell, is very aggressive and to me time matters. But one thing I have learned from this board is that there is hope after diagnosis. Any suggestions or bits of info would be appreciated. Thanks for listening.
Patti
9/05 – Sister diagnosed sclc
10/05 – chemo started –Cisplatin and Etoposide
