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colonoscopy results... roller coaster

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Ulcerative Colitis
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Posted 4/25/2017 10:28 PM (GMT 0)
So, yesterday I received a call that the path results from my scoping a week ago showed no goblet cell carcinoids. That's good news.
Then in the afternoon I had my appointment with the oncologist my GI had recommended, who has significant experience with these goblets.

He had blood drawn, and I am to do a 24 hour urine collection, to test to make sure the signs of goblet cells (or what they cast into the blood or urine) are not present as coming from elsewhere in my body. That thought TOTALLY freaked me, and I have spent some time envisioning the end of my life. I did more internet research... only made my thoughts worse. (And yes, I am prone to a dramatic imagination, fyi.)

Later today I spoke to my GI and he (who is a nervous sort usually) sounded very upbeat. He had talked with the oncologist yesterday and as a result felt that "we are on the right track" by following my gut with frequent scopings (1 year or less.)

So now I feel more relaxed again. I see the GI on Monday and we will talk further. My understanding at the moment is that I may be on the road to colon removal but without (at the moment) urgency; I might be so lucky as to plan the surgery, and it doesn't necessarily need to be asap.

After my bit of research on goblet cell carcinoids today, I will be very grateful if they are confined to the colon; other possibilities look much worse.
Posted 4/26/2017 1:07 AM (GMT 0)
That must be a relief. Keep us posted on your decision. btw, have you been in remission from the UC overall? Are you going to get a second opinion from another GI about whether colon removal in the future is necessary?
Posted 4/26/2017 4:24 AM (GMT 0)
It doesn't sound as though dramatic is something you are doing. Being thorough by research can certainly take its toll on the psyche, and it does seem you're on the right track with continued testing.

Hugs,
q
Posted 4/26/2017 1:29 PM (GMT 0)
I am happy your doctor felt good about your strategy. Seems like you have time to figure out the next steps, if you need to take any. Perhaps you can just continue to monitor? Did they say surgery was imminent?
Posted 4/26/2017 6:20 PM (GMT 0)
nssg, right. Probably for now monitoring the colon would be the way to proceed.

Jane, I have diffuse inflammation in the lower descending colon, which we will address. It's not causing me any particular symptoms.

My worry is that in my reading, I understood (rightly or wrongly) that sometimes these goblet cells are secondary to cancer elsewhere, like the lung or ovary. So this has me more worried than the colon.

The oncologist had blood drawn and also is having me do a 24 hour urine sample for a 5 HIAA test, to see if there are signs of cancer elsewhere. The urine sampling is a little complicated because there are a bunch of foods and meds I cannot have for 48 hours prior, so I can't just say "let's do this today!" Also, because I am working 7 days a week (not all day every day, but enough to make collecting urine a challenge, lol) and also I need to get the sample to his office as soon as I can when the 24 hours is over... I feel as if I am in the middle of a Big Deal and it is most unwelcome! I'll need to figure out which day to stay home and also whether I can avoid the various foods for those days prior.

I had been planning to take some vacation time and go away next week, squeezing in a few days between some obligatory work things, but now I will need to put that off. :-(
Posted 4/26/2017 6:24 PM (GMT 0)
Has this been an ongoing issue? I am assuming the topic is colorectal cancer? But if they found nothing, hopefully you are alright for now. If they are finding some cancerous cells in there then best of luck to you. You are doing the right thing by looking into all the details and asking questions.
Posted 4/26/2017 9:00 PM (GMT 0)
Sorry that you now have these lab issues to sort out. Many docs are totally freaked-out at the least prospect of cancer, even moreso than many "laypersons" are: that's what our era has wrought! And it takes a lot out of us, especially as we age, to fit in all the tests with their pre-conditions & sometimes ambiguous results. In my case after TAH for endometrial c. in late 2015, the gyn-onc dept. told my surgeon that I should not have radiation follow-up because that can cause intestinal blockage in IBDers. I was thrilled that they took my having IBD seriously-- whereas my surgeon immediately worried about "mopping up any stray c. cells that may have been left behind"! To reconcile all opinions I got put on a follow-up regimen pretty similar to that of a neighbor who had a more advanced stage ovarian cancer responsive to surgery + chemo: quarterly office exams + annual CATscan with contrasts. So-- sometimes the specialists are feeling their way along & trying to cover all known bases-- because to-date nothing about Big C. is ever 100% certain. Think J.S. Bach! Best wishes for the oncologist's labs to result clean ... / Old Hat (36 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/2/2017 12:00 AM (GMT 0)
Update (especially for Q, nssg, OH....)
Last week I saw an oncologist. Before he and I had even met, his nurse drew blood and also gave me a kit to do a 24 hour urine sample (which I will do tomorrow.)
When DH and I met the oncologist, he downplayed the idea that goblet cell carcinoids might be elsewhere in my body. He said that if these cells were only in the colon (and only showing up in the March colonoscopy, not in the April colonoscopy) the best way to proceed would be with "frequent, annual, colonoscopies."

I have spoken to the GI and have seen him since then. We are proceeding with a colonoscopy in 6 months, and then in another 6 months, and then, if all is clear, maybe a year after that (we will fine tune that as we come to it.)

Meanwhile, I will look to start Humira, because it is the biologic that my insurance will cover, to start with.

Having thought, for a week, about the possibilities of cancer having begun in the small intestine or ovary or whatever and having spread to the colon, "with bad results" as the National institute of Health document said, I am fine whenever the doctors recommend removing my colon (that seems the least bad of the possibilities!) but it seems as if even that is not imminent. How lucky I would be, to choose the timetable for that!
So... one more test hurdle and I will breathe a sigh of relief for the time being. Thanks for your support.
Posted 5/2/2017 1:31 AM (GMT 0)
Fingers crossed everything goes well for you!
Posted 5/2/2017 2:56 PM (GMT 0)
It's something to definitely keep on top of regarding scopes.
It's good you're working with a group of doctors and doing research on your own.
Hugs!
q
Posted 5/2/2017 4:32 PM (GMT 0)
That's great news! Very happy for you. I think doing the first one sooner (like you're planning) is a good idea. You're right, if you have 2 good ones 6 months apart, you can extend it a bit and feel more confident about things remaining clear.
Posted 5/2/2017 10:27 PM (GMT 0)
That sound very promising! Here's to continued good news and reports.
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