Carcinoid Anniversary #5

Woo! Hoo!

Today is the fifth anniversary of my diagnosis with carcinoid cancer (neuroendocrine cancer).  Like almost everyone, I had never heard of it before.  But, it was the word cancer and it was terrifying.  The doctor who called me said “The biopsy says carcinoid tumor and I don’t even know what that is, but it’s cancer. We have scheduled you to see an oncologist.”  It’s really terrifying to know a doctor knows the name of your disease but does not know what it is!

Being a geek, I scoured the internet for information.  In my experience, doctors don’t give you much information unless you ask questions.  You can’t ask questions with no information, so you get very little information from your doctors.  I found a study from 2006 that said carcinoid tumor with distant metastasis (liver in my case) had a 45% chance of 5 year survival.  That was scary.

But, I made it! Five years today.

Now of course, I know that 10 years ago, the injections that I get every month were not used as much and surgery was not recommended as much. Survival rates are getting better.  One reason that I am not at least very sick now is that I heard three experts speak at a meeting more than three years ago and they recommended surgery if possible.  My doctors wanted nothing to do with surgery.  I had to get a second opinion and fight for it but I got it.  I was better immediately and I still feel better than I did before the surgery, three years later.  I do not suffer many symptoms nor very often.  I am weaker and get very tired more often but I’m older also (I’m told).  My heart symptoms may have been caused or exaggerated by the disease or the medication for the disease but it seems under control for now.

That study I found also stated that the average age of carcinoid diagnosis was 64 years old.  I got the diagnosis one day before my 64th birthday!  Funny huh? Not so much.

It’s good to be able to report something good now and then.

Other news

A few weeks ago in Bladder Cancer, Spring Fishing, I reported about my procedure  for my second cancer.  At the time, things were good.  Shortly after that  blog post, I discovered that I had a severe UTI (urinary tract infection). I suspect that it was contracted in the hospital, but cannot know that.  Now four weeks since the bladder cancer procedure, I may be recovered from that or maybe I am almost recovered from that infection.  The doctor is testing to find out.

My NETs specialist has tentatively scheduled May 20 to do a lump removal from my breast to biopsy and make sure that the lump is either benign or carcinoid (which is not dangerous in the breast.  Hopefully I do not also have breast cancer.

Two days after that procedure Laurie and I are scheduled to go visit Scotland (our son and family) and then Iceland for a few days.

Tomorrow (my birthday), I am co-chair of the Colorado Carcinoid Cancer Support Group meeting.  Dr. Liu, our well-known specialist, is planning to come to the meeting so it should be even more interesting than usual.

May we all have the best possible outcomes,

Cy

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Carcinoid Anniversary #5 was last modified: May 6th, 2016 by cy

8 thoughts on “Carcinoid Anniversary #5

  1. Congrats for reaching five years and continuing to enjoy life. Have a great time in Scotland with family and take plenty of photos.
    I remember when I was told my diagnosis, I was given the name on a piece of paper to research. Good luck with the procedure, my brother had removal of a lump in the breast at 21.

  2. You have definitely made choices that have improved your quality of life. I am proud of you for fighting for what was best for you. Live well and prosper, Cy.

    Michelle

  3. Congrats on living for five more year. Here’s hoping another 10 at least. My carcinoid started to make itself known in 1999. Over the next three years I was hospitalized 4 times with partial small bowl obstruction. I was told the obstructions were from earlier abdominal surgery that had produced adhesions.
    I finally deside to have surgery to remove adhesions . Wake up and surgeon tells me no adhesions rather tumors, believed to be carcinoid disease, need to see an a oncologist, pronto. A quick internet check shows 5 year survival rate is 12%. 12% is followed by an asterisk that says the 12% is without treatment. They should have had a second asterisk that said there was no treatment.
    Yes a lot has changed since then to move survival rate to 45% but still not a bet anybody would choose to make.

    1. Casey, glad they found it and that you have survived this long. I know a couple of people who are going on 25 years and another at around 30 years. Let’s hope we all can look forward to that.

      1. In January, I changed from Kaiser Permanente doctors to Dr. Eric Liu here in Denver. He is one of the country’s true experts in neuroendocrine cancer.

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