Back on the rollercoaster again... - Cancer: Lung Message Board

DaveInVA · 09-20-2007, 08:22 PM

I had a middle right lobectomy in Feb '06 for stage 1 carcinoid cancer. The tumor was 7.7cm. A follow up CT scan showed clean and I've been getting tested every 2-3 months for chromagin A, an enzyme carcinoid cancer produces. They had all been in the normal range since the surgery and the previous one had actually dropped in level. I had another one Monday and got the results back today and this time its 3 times the previous test result and now out of the normal range. This test is supposed to be pretty accurate and rarely gives false positives. So now I am being set up for more testing and another CT. I was also told that the new tumor may not yet be big enough to be picked up on a CT and PET scans usually don't pick up carcinoid at all as it has a low metabolism compared to most other cancers. So now its a waiting game to find out where it is this time...

Dave

rockie · 09-20-2007, 10:08 PM

Dave, they could be wrong. Us women go through false positives on our paps.

I have been following your story as that would have been what my Bud would have gone through if caught at stage IIIa instead. I cannot tell you how shocked I was to hear of your most recent developments. Please keep in touch and let us know how you are doing. We are in our corner, you are a survivor.

Take care. Healing and prayers, hugs and love,
Jan

DaveInVA · 09-21-2007, 08:30 AM

Thanks,
From what I have read about this particular enzyme test it virtually never gives false positives but does give false negatives 20% of the time. Because my tumor was so large its more likely that it has metastasized in fact the statistics for carcinoid says that any tumor over about 2cm has likely done so by the time its caught. The hard part is the waiting game. It was my surgeon that ran the chromagranin A test and he wants my oncologist to handle it from here with the further testing and CT scan appointment and of course he is out of town till next Friday. To make matters worse my surgeon is moving to Africa soon and ia not being replaced so if I need more surgery I will have to make arrangments to get it done in another area. I live in a small economically depressed town and all the Doctors are leaving town and even the hospital is in trouble. Hopefully it will turn out to be nothing..

Dave

ladyj2 · 09-21-2007, 09:49 AM

HI Dave,
I'm really sorry to hear of your news. Being from a small town it's great that you come to this board to stay abreast of all the treatments. If you went to a bigger town do you think you would be a candidate for cyberknife? On our local TV they showed a woman who had surgery on hers a while back but it returned to the other lobe and they are treating her with cyberknife.

DaveInVA · 09-21-2007, 10:45 AM

From what I have read so far Carcinoid doesn't respond well to radiation or chemo as a rule so not so sure about cyberknife being an option. However RFA (Radio Frequency Abatement) might be depending on where it is this time.

Dave