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Zebra Update

In the last couple of days, I have written about my concerns (zebra articles) about going to my liver specialist/surgical oncologist to check some things out that I shared a few weeks ago in Feeling Vulnerable Today .

Such is the life of a "zebra"--in this case, a person who has been diagnosed with Carcinoid Cancer/Neuroendocrine Tumors (NETs). Because it is a systemic cancer, we do not know when or where the next small, seed-like tumor will decide to latch on and have its way with surrounding tissue. Most of us are diagnosed with this cancer in the stage 4 level, because we are misdiagnosed for many years. Doctors go with the easiest way to diagnosis the presenting symptoms early on.

For those who have not read what has been going on, please feel free to go back and investigate the last few days. But I just want to get to the doctor's visit and the MRI:

  • The MRI was done and was initially read, and we are awaiting the final radiology report. There does not seem to be any change in the liver lesions (metastases from the carcinoid cancer). There is no initial indication that there is anything new going on in the small intestine or the large bowel.
  • The blood work was done, and we will await the results, which take a little while. I do not anticipate any issues, as it is checked every quarter.

So, this leaves the BIG QUESTION: What happened and why?

The only explanation that might be likely is: There could be lesions from the bowel resection from three years ago, which can be difficult for some foods to pass through, which will irritate the area, and cause issue. Other than that, there is nothing else on the scan that could have been cause for the doctor's concern.

Living with this disease is crazy sometimes. The pain is there, but it often goes unexplained, because the tumors can be so elusive. Symptoms present as other things, so it is most often misdiagnosed.

Yet, in my case (as with many), it is a fairly indolent cancer. It is inconvenient, however, and the symptoms are not something I would wish on anyone. Some day, I shall tell that story, but not for today.

Thanks to all of you for your continued thoughts and prayers, and your support of me.

* * * * * * * * * *

For more about my life with Carcinoid Cancer, my philosophies, and my fears, please read:

I Am a Zebra

Facing Another Diagnosis?

I Have No Bucket List

Three Years and Continuing to Make Memories

Suicide: The Night I Took My Life

To learn more about Carcinoid Cancer click here for more information and links to Carcinoid Cancer websites


© Copyright 2015 - Coral Levang. All Rights Reserved.

mammogram | breastcancer | carcinoidcancer | cancer | worry | fear

Carcinoid | Carcinoid-Cancer | Neuroendocrine-Cancer | Suicide | Hopelessness | Hope | LivingwithCancer |

Image Credit » by julielines

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wolfgirl569 wrote on July 1, 2015, 12:31 PM

Glad to hear that the tests that are back show good news. I am sure the rest will too

CoralLevang wrote on July 1, 2015, 12:35 PM

Thanks, wolfgirl569 . I just wish there was a more definitive explanation for what happened. I dislike that medicine is not an "exact science." LOL

cmoneyspinner wrote on July 1, 2015, 2:05 PM

There are many people who have ailments and they just give up. So when I see people like you who keep on keeping on, it motivates me more than you. Thank you for giving us your example of courage.

valmnz wrote on July 1, 2015, 4:25 PM

That is such good news. You just make sure you continue to look after yourself properly and try to stay well.

MegL wrote on July 1, 2015, 4:52 PM

Glad the news is positive, if a bit indefinite but better this than definite bad news!

CoralLevang wrote on July 1, 2015, 7:45 PM

cmoneyspinner Thank you for your very kind words. I don't always feel courageous, but throughout my life I was taught that the only options one has is to keep on or give up. What I did not always understand, nor did I want to, when people kept on, but they made everyone else miserable in doing so. It, unfortunately, taught me that I think I am alone so don't speak up. I've had to learn some valuable lessons along the way.

CoralLevang wrote on July 1, 2015, 7:48 PM

&AbbyG There doesn't seem to be much rhyme or reason, sometimes. I try to see each day as a victory. I can also allow myself to go into catastrophic mode on the inside, preparing for the worst. I don't often let others know when I am there. Haven't been there in a couple of years, but capable of it, nonetheless.

CoralLevang wrote on July 1, 2015, 7:49 PM

valmnz Will do. I realize that I'm the only one that I can count on to do that. Besides, I don't take orders too well. LOL How did I last in the military? Thank you so much, my Kiwi friend. xo

Last Edited: July 1, 2015, 7:49 PM

CoralLevang wrote on July 1, 2015, 7:50 PM

MegL Agreed! Thank you for that reminder!

Shellyann36 wrote on July 2, 2015, 2:59 AM

Glad to hear that your tests were good. My cousin has lived with cancer for several years. At first he was diagnosed with ulcers but they could never seem to solve his pain problems. Finally after seeing several doctors he got his diagnosis and every time the cancer is in remission he breathes easy for a while but it seems to come back. It takes a strong person to hang in there when they are in so much pain and are always so worried. Keep being strong.

CoralLevang wrote on July 2, 2015, 7:57 AM

Shellyann36 With this type of cancer (neuroendocrine tumors (NETs)/carcinoid cancer), there really is not any remission. I'm not sure what type your cousin has. What is so difficult in dealing with some of these diseases is that the medical community is often ill-informed, and disseminate information that inaccurate. It is why any of us as patients MUST learn as much as we can. Caretakers, friends, and family, too. In the case of CC/NETs, if we were to build awareness like has been done with breast cancer and other cancers, we wouldn't have over 90% of people with it being diagnosed at the Stage 4 level. I hope your cousin is doing well and staying positive.

Shellyann36 wrote on July 4, 2015, 6:26 PM

I am not exactly sure what his diagnosis is, I just keep praying for him. I do know that they just recently went to NYC to see a specialist and I have not heard any "good news" from that visit. I will be praying for you and having lots of positive thoughts. Internet hugs to you. I commend you for being so strong.