Wednesday, July 24, 2013


I really hate gossip. Even well meant comments are gossip. I really hate it when you ask people not to tell things and they do anyway and say "She doesn't want people to know," If you say that you have told, and if that person tells it to a couple of people, eventually everyone knows about it. The "gossip" everyone is talking about is me. I didn't want people running around saying that I have cancer, which is exactly what they are doing. We don't know 100% what I have.

Enough ranting!

In April my doctor ordered a liver ultrasound because of tenderness and enlargement. The ultrasound showed 2 spots in my liver. It was possible that these were hydatid cysts, which is a parasite which causes anaphylaxis.

A CT scan was ordered, and then an MRI. The first MRI was done without contrast, so I had to go back for another with contrast. I have two masses in the right lobe of my liver. They are not hydatid cysts or regular cysts. Several radiologists and surgeons have reviewed my films. The tumors didn't grow much between the CT and MRI. The docs say that the tumors have to come out. We can't wait and see what happens. (It seems like we are doing that anyway.)

Multiple tumor maker tests were done and my Chromogratin A came back 5 times normal. This test is for carcinoid tumors.

The doctors think I have carcinoid tumors in my liver, but of course, nothing is certain until a pathologist looks at them after they are removed. Carcinoid tumors never start in the liver; they metastasize (spread) from elsewhere in the body.

I am trying to get an Octreotide scan approved by my insurance. This is a head to toe scan looking for the primary tumor. I will be given Octrotide with a radioactive isotope which will bind to the outer lining of a carcinoid tumor.  The scan was to have started on Monday. The insurance wanted two additional lab tests done. I had those done on Thursday morning, but the results of one of the tests is still not back. They have sent my case to the medical director of the insurance company to try to get approval without the test results.

The importance of this scan is to find the primary tumor. If they can find it, it will need to be removed to prevent a recurrence. My hepatic surgeon wants to avoid me having more than one surgery due to my other health issues, so we are delaying the liver surgery hoping that we can get all of the tumors out in one surgery.

The masses cannot be biopsied by needle because one would require going through my lung, and the other cannot be reached by a needle. A needle biopsy can also spread abnormal cells when the needle is pulled out through healthy tissue.

The silver lining is that carcinoid tumors in the liver cause anaphylaxis in some people. If this is what I have, and it is removed, I hopefully won't have anaphylaxis anymore. This disease is called carcinoid syndrome.

Obviously, I am very anxious to get this done. The ultrasound was April 29th, and I am still trying to get this issue resolved. Patience is not my virtue.

Best case scenario with the surgery is that it will be done laproscopically. There will be 3 or 4 small incisions for the scope and instruments,  and one incision big enough for my surgeons hand. He will try to get the tumors out this way. If this goes well I will be in the hospital for a couple of days. He will not know for sure this will work until he is in there.

Worst case scenario is that I will have to have an incision down the middle of my abdomen. The surgeon says sometimes it is better for the patient to just remove half of the liver. There is less blood loss than trying to carve tumors out sometimes.

The risks for me are the wounds not healing, and the possibility of having a carcinoid crisis or anaphylaxis during surgery. Even though I am much stronger than a year ago, I am still not even close to healthy. I continue to have anaphylaxis on average once a week. Diabetes, high blood pressure and obesity make it harder for the incisions to heal.

I asked what I should be doing to prepare my body for the surgery, and Dr. Lee said eat. He said I may become malnourished after surgery because my liver will pull all of my nutrients trying to heal itself. Eating is not a problem for me as long as I have my multiple tummy meds on board.

Either way I will have a rough couple of weeks, but it will be well worth the pain to get rid of the tumors.

Since lots of people already know, feel free to tell the world. I am at peace with whatever it is. If you pray, ask that my scan be done as soon as possible. Until it is done the surgeon does not know the best approach to take with the surgery.
I will update the blog when I have new information so that you know what is really going on.

The grand babies are doing well. The newest is already giving Casey a belly. He is due February 7th. Bentley is doing home school preschool. He learns more and more. I am amazed every time I see him, Evan is doing well,
Daddy is feeding Bentley watermelon. Bentley hates it. He said yuck!
Evan is sleepy.
This is little _________________________ Harris. I am calling him Rasheed. We don't know the sex of the baby yet, but we are all saying he.

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