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

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

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

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.

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

Dave, I noticed you were from Danville. A friend of mine has lung cancer and goes to Wake Forest Baptist Hospital in Winston.....she has had wonderful results there. They have a huge cancer center...I know you are familiar with it. I also knew someone from Reidsville who wwnt to the Baptist and was able to do some of her chemo at Annie Penn.

Please keep us posted. We are all pulling for you!!!!!

Thanks,
I am seeing the oncologist Friday to get set up for more tests, scans etc. I'll post when I know the results of everything. In the meantime I'ved been doing more online research on carcinoid cancer as lots of new stuff about it has been posted on internet since I was originally diagnosed.

Dave

<<prayers>>
Dave, I don't know how else to help. When Bud was ill, all I could do, it seems, was pray. He still went to Heaven, but that was what our Lord had prepared us for. In the meantime, I want to be available to you for support and strength. You can do this Dave. It's just a bump on the road.

Please let us know how your next exam goes.

Take care and know you have a fan club.\

Hope, prayers, love and healing....
Jan from So. Indiana

Dave, I am so sorry to hear your news and will be thinking of you and sending positive thoughts your way on Friday. JanMarie

I just came back from my oncologist and he took blood for some other tests such as liver tests etc. He is setting me up for an SRS octreotide scan in Wake Forest. This is a scan thats more sensitive to carcinoid cancer than a CT or a PET scan. It takes 3 days to complete the scan going twice a day. I will update when I know more...


Dave

Hi Dave,

A quick post to let you know how sorry I am to learn that you have to go through all this again. I do hope it all turns out to be a false alarm for you.

God bless
Cee

I got some good news today.....I did some research on the Chromagranin A test that had come back at about 3 times what should be normal. The lab that did the test said there were no prerequisites and that it was a "walk in" blood test. I found out online that before the test you are supposed to fast for at least 6 hours and no physical activity before the test. Also, some acid reducing meds can affect the test. I walked 3 miles just prior, ate breakfast just prior and had taken prilosec for acid reflux. I got them to retake the blood test and now its back in the normal range. In fact its at the same exact level it was from my test previous to the high one. The lab said it will now add those prerequisites to that test...My oncologist decided to not do the octreotide scans at this time and wants to wait and see how my next 2 month Chromogranin A test comes out...

Dave

Dave,
I have been checking in to see if you had posted and this is just wonderful news! I bet you must be ecstatic....heck, I'm ecstatic for you!! I just feel bad that you had to go through all that stress in the mean time. Take care and enjoy life!!