My ex-husband was dx'd w/SCLC in Nov. 07. He had an 11 cm (not MM) tumor surrounding his left lung with activity in two lymph nodes and his larnyx. He, of course, was not a candidate for surgery but had aggressive chemo/rad (cisplatin and etoposide and 33 rads). It was a very rough ride. His PET scan showed no mets at the time but they could not do a brain MRI due to an eye shunt (they didn't know what it was made of and he opted out because of how painful that implant was and didn't want to chance having to have it done again.)
Anyway, he finished treatments in late April and PCI in June. He was considered cancer-free (in remission) at the time. He continued to have follow-ups with onc or RN on a monthly basis and labs until July/Aug. Then the labs stopped and in Nov. was told he would only have to see the onc every two months. A CT scan was scheduled to be done before his next appt. w/onc on Jan. 9th. This was the only CT scan he has had scheduled since his diagnosis over a year ago. He also has had no other PET scans or MRI's.
He drank all the white yucky stuff before his CT scan and then when he went in to have it done he was told he didn't need to because they were not going to scan his abdomen (as ordered) just his chest. We went back down to the cancer center afterwards and asked why. We were told it was because Medicaid would not approve the abdomen scan. Only the chest.
I am livid. No one has said anything up until now that Medicaid was determining what testing he would be able to have done, etc... He has SCLC!!!! Shouldn't he be getting CT scans and other tests at least every three months? I'm sure this is not the normal routine and am very angry. I need to know how to approach this with the onc when we see him on Friday.
The RN we spoke to couldn't answer our questions and did not know if the answers were based on his bloodwork, etc...I told her that he hadn't had any bloodwork done since August or July other than his pre-CT scan work to show kidney function!
As you can tell, I am very upset. Do I have a right to be? He does seem to be doing okay, but do we have to wait until he has symptoms of it spreading somewhere else before they will do anything for him? It will likely be too late by then.
Please help!
Sherri
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Follow-up testing
- By Sunrey
- Posted January 6, 2009 at 10:09 am · 4 replies
- In Small cell lung cancer
- Shared with the public
4 replies
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- Newest first
- By jmichelle
- Posted January 6, 2009 at 12:41 pm
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Hi Sherri,
First of all... yes, you have every right to be upset. He needs the abdomen scan to check for progression of disease. Unfortunately, SCLC does like to spread outside of the lung area.
This very thing happened to my Mom about a year ago. No one bothered to tell us about the changes in Medicare so we were quite shocked. After many conversations with the Oncologist's office ( I was raising holy you know what!) One of the girls that handles the billing etc. found a loop hole in which an abdomen scan could be scheduled and covered under Medicare! She was able to change the billing code or something like that... I can't exactly remember.
Anyway, call the doctor's office and talk to them. This is most likely NOT the first time this has happened. If you can't get a resolution to this let me know and I will call the girl at my Mom's Dr's office for more details.
Hope this helps!
Jodi
- By Tmc
- Posted January 10, 2009 at 11:13 am
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Yes, you need to fight this. Good luck!
- By StacieK
- Posted January 10, 2009 at 11:47 am
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Sherri- I am so sorry you have to deal with this on top of everything else. I can't believe they don't do the full CT scan every 3 months. As I know too well, SCLC can come back without showing up in the lungs, my Dad's came back in the liver. Keep fighting.
Stacie
- By Sunrey
- Posted January 10, 2009 at 1:29 pm
- Report post
We met with the yesterday. We brought the issue up with him. He stated that Medicaid would not cover the abdomen because he has had no previous activity in that area. He also stated that the CT scan that he had does show the upper abdomen where it would most likely spread. Basically, he is saying that CT scan came showing no new growth and that he should consider himself fortunate that he has made it past the 6 month mark and that his recent CT scan was "good news." He also said that if the cancer does return that at that point it would make no difference in his treatment plan if it is caught early or not. Another words....it will be the beginning of the end and they will attempt to treat it but he is basically saying that at that point it will only be prolonging the inevitable.
He stated that he will have another CtTScan in late April and does not need to see him for another 4 months but will see the RN in 2 months. This just doesn't seem right to me and I don't know what to do about it. I'm at a loss. He has only had one PET Scan when he was first diagnosed and another one has not even been suggested.
We have felt throughout his treatment last year that they were treating him very well and doing all they could and they did a great job. But know I just don't know....
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