Carcinoid Tumor Surgery in my future?

Today, Laurie and I met with my surgeon.  We are planning surgery to remove the large tumor in my liver.  The last scan places its size at 6.3 cm.  For comparison, a tennis ball is about 6.7 cm.

About this time last year my injections to treat the disease were increased from every 4 weeks to every 3 weeks.  They basically stopped my symptoms for a short while.  Over the past 6 months my seratonin blood levels have been slowly increasing and have been outside the normal range over the last 4 months.  My symptoms have been increasing very slowly over the past year.  Alternating diarrhea and constipation is worse than it has ever been.  The evening chills are nearly as bad as they were two years ago when I was diagnosed.  The night sweats occur pretty frequently.  My oncologist fears that the sandostatin injections may have something to do with the atrial fibrillation that I had last year so she does not want to increase the dosage.

On February 21, 2013, I saw an outside oncologist at the University of Colorado Cancer Center.  His opinion was that I should not have chemoembolization at this time but should pursue surgery.  The reason for this is that studies show that it is likely that both survival time and time to progression of carcinoid tumor are greatly enhanced (on the order of 3 to 10 years) by removal of the tumor.  Odds would be even better if they could also find and remove the primary tumor, but we will not address that right now.

The surgeon is checking with my cardiologist to make sure that I am healthy enough for this “medium/large” surgery.  I may need to have an echo cardiogram to ensure that I can take it.

The surgery, if it progresses normally, would include removal of the large tumor, removal of my gall bladder, if time and conditions permit the surgeon may ablate (cook) a smaller tumor as well. It would take 6 to 8 hours and I would be hospitalized for 6 to 10 days afterward.  They project recovery time of 2 to 3 months.

My gall bladder would be removed because I have developed gall stones.  This is a common side-effect of the sandostatin injections that I receive every three weeks to treat the cancer.   Many carcinoid patients have their gall bladder removed for this reason.

I will report as soon as we know that surgery is good to go and schedule it.

My thanks to all for their good will and support.

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Carcinoid Tumor Surgery in my future? was last modified: March 27th, 2013 by cy

12 thoughts on “Carcinoid Tumor Surgery in my future?

  1. Hey frank, sounds pretty serious. Maybe you are just in menopause like me. I have the chills and terrible night sweats, no sweats of and on all day. What a mess we are.
    All kidding aside if there is anything you guys need or want just let me know. If Laurie would like somebody to come out and give a little bit of help or support tell her I would gladly.
    Love you much.

  2. hey Cy, well I guess it would be better to go ahead and take care of thr tumor. sounds like you may have a rough few weeks coming up. If there is anything I can help with let me know. Thoughts Love and prayers

  3. Linda, other women of a certain age have told me “Welcome to my world!”
    Unfortunately mine won’t go away and there are other likely, more troubling things that could happen.
    Larry, my thoughts too. Just go on and take care of it.

    Thank you both, will call for help when we get there.

  4. Cy, I only know you as a fellow carcinoid patient. At age 72, I am blessed to have a small tumor,although inoperable, it has thus far been managed by the sandostatin. I am well past menopause…and the chills are one of my most annoying symptoms…certainly not the worst. As a fellow suffering carcinoid patient, I wish you the best medical care available, certainly prayers for a healthy recovery. You have made my disease much easier to bear by having your posts. As a widow, there are not many people who are eagerly standing by waiting to listen to endless complaints.Go into the procedure as positive as your heart will let you, sometimes a smile is all a very sick patient can muster…blessings for a healthy return to the blogger I know.

  5. Cy,

    I am sorry that it has come to this. However, if successful, you may feel much better after you have healed.

    Keep hanging in there. You are in our thoughts and prayers.

  6. Linda, I am pleased that my blog brings some ease to you. I am also sure that you do not make “endless complaints” to others. Thanks for the blessings and I will be around for quite a while to keep blogging.

    Michelle, Thanks sister. I will be around for a long while to discuss music and the world in general.

    Cy

  7. Cy, thanks for updating. Since we had coffee last week, you’ve been in my prayers…I know you are doing the right thing. Don and I will make ourselves available for whatever you need as you know. I’ll see you Saturday for our early Easter brunch and we’ll talk more…

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