Bladder Cancer Labs Are In.

My Doctor just called with the lab results from my procedure last week.

Good news: The cancer is a low grade bladder cancer.  It’s not aggressive.  There is no known relationship to my carcinoid tumor.  We meet in his office on the 19th next week to remove the stent.

Bad news:  It recurs frequently.  About 50% likelihood of recurrence and then we have to do this all over again.

The Doctor said now that he knows for sure what it is, if it recurs, he can treat the bladder with a chemo after removing the tumor which will decrease the likelihood of recurrence.  He also said that “now everyone at the hospital knows the special procedures for you” so there should not be any problems.  Maybe I’m a little cynical but it’s a large hospital so I do not think “everyone” or even all of the anesthesiologists are aware of what has been done twice for me.  But, at least it’s on record.

I feel much better today.  No pain killers since Sunday evening.  Still very tired but I have been out to breakfast with friends Sunday and made trips to the dentist and my PCP (personal care physician) today.  I am going to a meeting tonight and plan to attend my meditation meeting tomorrow night.

So I will be checked again for bladder cancer in September, carcinoid cancer progression in August or September.  Let’s hope we have no more drama then or between now and then…  I want a good summer!

May we all have the best possible outcomes!

Cy

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Bladder Cancer Labs Are In. was last modified: September 4th, 2014 by cy

15 thoughts on “Bladder Cancer Labs Are In.

  1. it all sounds like good news from here. i’m glad they know what it is you have and what to do about it. happy to know you’re on the mend! hope to join you soon. may you be filled with loving-kindness…..

    1. The bad news to me is that it sounds like it may be an ongoing issue for me. Would have loved to hear that it is cured and won’t come back.

  2. I hope have a peaceful relaxing summer with your family. I’m now on Sandostatin
    30mg LAR every 3 weeks. My neuroendocrine cancer has advanced with more tumours ,
    but they are all under 1 cm. They are considering enviromelus chemo. Well I pace myself and have been enjoying gardening with my husband and including my grand\daughter Kate,who is 5. Take Care. Hoping for the best possible outcomes.
    Shelley Orr

    1. Shelley,
      Thanks, I am glad to hear that you are getting treatment and able to consider enjoying the summer and family. I too hope to enjoy the summer and and family.
      My best to you,
      Cy

  3. I’m so sorry you are going through what you are. I read your story and subscribed to your blog. Thank you for blogging! I have thought I have carcinoid for a while now, but have no insurance to even get it checked out.

    Doing all I can to try to do things at home to feel better, but the flushing and histamine and digestive problems (along with pale stools, etc.) is really getting to be too much. Not sure how people deal with this without being able to go to a doctor like me.

    I came across your blog because I was studying histamine / Zantac / carcinoid. I’m not one to take a lot of medication; rather I use supplements and foods, but because I am having pancreatic cancer symptoms, too (of course, undiagnosed), I decided last night FINALLY to get on an H2 receptor blocker to try to get the histamine down. It didn’t last long, but I did get a little relief, however my stomach is bloated like you can’t imagine!

    I know I’m rambling – no one to talk to about this except for some facebook friends and my pastor who comes every two weeks to bring me the Lord’s Supper, and my husband. I’m bedridden, too. Oh, the joys of being sick ha!

    I will pray for you and keep an eye on your blog – please, do keep us informed – some of us who are bedridden and such need people like you!

    Many blessings to you and your family.

    By the grace of God,
    Tamara Blickhan

    1. Tamara,
      Your story touches me. Because you have the symptoms of carcinoid syndrome and you think you have pancreatic cancer symptoms, I immediately think: pancreatic neuroendocrine tumors metastasized to the liver.
      I urge you to do whatever you can to get this checked. Pancreatic NETs are often more deadly than the carcinoid NETs which are in the gut or lungs most often and also metastasize to the liver. The syndrome often appears because of the tumors on the liver.

      I wish you the best possible outcome,
      Cy

    2. Tamara there are joys in being sick at least in my experience. it has been an opportunity to look within and get in touch with my true Divinity. In so many ways I’m happier and stronger than ever before. sure i wish i could have done this without the suffering but that is the way it is and i wouldn’t exchange the gifts i’ve got with this experience for anything in the world. I wish you the best in every possible way.

  4. Thanks for your replies, Cy and Philip.

    “pancreatic neuroendocrine tumors metastasized to the liver” is exactly what I have been thinking.

    What does one do when they have no money and no insurance, though, ya know?

    I also have a gallstone that is blocking the bile duct (it’s enormous – not strong enough to have surgery at the time it was detected in 2010 and now no insurance for it).

    I am in a state of constant inflammation, of course. Doc gave me Meloxicam to bring that down, but the 1 pill a day only lasts for a couple hours.

    Do you all deal with pain down the arms – burning?

    And, what about acid then no acid and radiating pain across the back from acid (which, for me, goes away when I tilt my pillow up a bit and / or take an antacid which I hate doing if I can get away with not doing so and / or take a sip of water to bring the acid down from the esophegus to the stomach).

    Because I have such a problem with my gallbladder, I don’t eat much fat at all; just about 2 tsp. of butter or a little olive oil or sometimes some cod liver oil, but I get pretty nauseous with the CLO.

    In fact, I am starting to get nauseous nearly every day now. The only time I threw up blood was June 23. I figure it’s from an ulcer.

    So, have any of you run into someone like me who has no options as far as labs and doctors and all?

    Oh, and, another question, do you FEEL the carcinoid tumors? I have 2 spots that I actually feel with my finger. One is on the left side feeling like it’s on the bone of my rib cage at the bottom and burns / hurts… the other is on my left leg and when I get the flushing or am stressed, it itches like MAD! I looked up carcinoid leg on google thinking “yeah, whatever, carcinoid is only digestive and glandular.” NOPE, found out that some can attach to bone and one guy even had a big one on his leg bone. Hmmm.

    Tamara Blickhan

    1. Tamara,

      No I do not feel pain in my arms.
      Most people cannot feel the tumors through their skin. I thought that I did and it turned out to be a blob of fat under my skin which could be painful when pressed. As I get older, I get more of those bumps.

      Carcinoid can metastasize to the bone.

      I experienced an acid stomach for at least 8 years. It developed into a bleeding ulcer. Turned out that my carcinoid tumors generate gastrin making the blood levels 3 to 4 times the levels expected in humans. Gastrin tells the stomach to generate acid. It is known that some carcinoid tumors do that. As soon as I went on Sandostatin, the acid got much better. Since my liver surgery last year, I have had no acid problems at all.

      I know that some people have gotten insurance with help to pay though the Affordable Care Act. Don’t believe anything you read about it. Investigate thoroughly yourself. Also, I know for certain that if you can get a diagnosis and go on Sandostatin injections, the Novartis company will help with the cost of that. In fact some carcinoids get it for free! Diagnosis and treatment is possible. Do not give up.

      Namaste,
      Cy

    2. start by contacting your dept of public health like denver general is here. what they are unable to help you with they should be able to refer you to a local or regional org that gives referrals to health care providers. in home care, home makers, legal svs it sounds like you’re to sick to take it on yourself i know i am so the first thing thou do is ask for an advocate who will either do the work or help you through the process. there is a lot out there and it takes patience and a long time. good luck!

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