About

I am an experienced, primary care Internist.  This blog describes my personal journey with cancer.

This experience is new for me.  I was diagnosed with cancer in March, 2013.

My cancer is an uncommon type, called Gastro Intestinal Stromal Tumor, or GIST.  GIST is a type of sarcoma, cancers that arise from the body’s connective tissues.   In my case, the muscular component of the stomach wall.  Sarcomas constitute about 1% of all cancers.  GIST cancers are fewer.   From what I read, most primary care doctors have never heard of GIST, and not all oncologists are familiar with this cancer.  Untreated, GISTs usually become metastatic.  GISTs do not respond to chemotherapy or radiation therapy.  There are new, high tech pills for GIST.   Those medications cost more than the average person’s annual salary.   In my case, the presenting tumor was removed surgically.   The medication is considered “adjuvant”.  The medication most likely retards growth of microscopic cells, which like dandelion seeds, often pop up later with new tumors.

This blog describes my experiences with GIST cancer, the treatment, doctors and the medical system.  It also describes my thoughts along the way.

The name of the blog refers, obliquely, to the zodiac symbol for “Cancer”, the Crab, and the year of my diagnosis.

For now, I’m not giving my name, that of my health plan, hospitals, doctors, or other providers.   Not doing so, gives more freedom to describe my experiences, with minimal self censorship otherwise.  My experience, among fellow doctors. nurses, other health care employees, and working for a health plan, is they are all human.  Some are kind and caring, some are true professionals, some are intellectual, some are emotional, some are insensitive, narcissistic, or judgmental jerks, and most are just humans, somewhere in between.  Openly biting the hand that feeds you, so to speak, can have repercussions.  So if you are a doctor, or the employee of a health care system, and you think you see yourself in here – you might be mistaken.  If you feel complimented, embrace it.  If you feel slighted – get over it.  Your career, and mine, is a calling, as well as a profession.  It is about the patient, not about you.

If you have cancer or love someone with cancer, and happened on this blog, I hope these experiences and thoughts will be useful for you.

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7 Comments (+add yours?)

  1. B
    Nov 10, 2013 @ 16:20:50

    Hello, found your blog & entries very insightful. Like you, woke one day only to find myself in the ER-first told I have ovarian cancer. After visits in hospital by three oncologists with the worst bedside manners I’ve seen who handed me their business cards promoting I look them up when I get out of hospital, I infom my health ins. to refer me elsewhere. I end up at University, have surgery only to find I have GIST (some say if you have cancer, this is the one to have) geez, thanks for that. So with mets & a 33 staple incision, I recover & start Gleevec only to return to hospital in isolation after Gleevec wipes out my WBC’s completely. I am monitored for weeks & then back to work (in IT – info tech & telecom) my chosen field of 30+ years. Fatigue, diarrhea, nausea, etc… Plague me even after 3 years. I can do my job remotely (afterall, I work in IT) but there some in my office that think I’m getting a bonus! Nice…. NOT! A cancer life is not a bonus. I’m given an ADA accommodation for my work at home schedule and after 2 years HR loses my file & questions my qualification for an ADA accomodation. They make me fill out new paperwork & after 9-10 months later they propose to take away 1/2 of my work from home schedule, I protest of course, take it to my Union, they rollover like puppy dogs & now I’m about to venture into the legal world of disability discrination. Thanks for that…I’ve pasted 2 year mark on Gleevec & am scared for next scan 2 days from now; I’ve had so much stress from work & my oncologist sent me to psychologist, I’m now also suffering adjustment disorder from work related stress. Ive worked same place 24 years come January & I’m amazed how little respect I have even those that were friends over the years, what a mess! I hear your story, we’ve all got them. Write back if you find time or I’ll send update at a later date. Thanks for sharing, enjoyed your blog! B.

    Reply

    • crustacean2013
      Nov 12, 2013 @ 16:13:14

      Barb,

      I hope your scan is reassuring for you. Sorry I did not respond sooner.

      Many of the things, you described, also resonated with me. Oncologists with lousy personalities – yes. That statement “if you have cancer, this is the one to have” – I’ve heard that several times. They must have a convention where they get together to think of inane pseudo-helpful things to say.

      One doctor told me, with Gleevec “Your cancer will melt like snow on a sunny day”. So reassuring. But the process is nothing like that.

      I continue to work. The fatigue is very bad. If my employer presses too hard, I may have to look into disability, but I don’t want to. My health insurance, and the cost of Gleevec, are through work. I get meaning in live through work. All of my live, I have wanted to contribute and be productive.

      Hang in there. Please let me know about your scan report!

      Reply

  2. Barb from MN
    Nov 27, 2013 @ 16:55:48

    Hello, we are down in sunny Florida, will be here for another week on a much needed R&R. Been to Siesta Key beach & lunch with friends from UK, Thanksgiving will be with friends at the pool ramada. Today we are off to the Ringling Museum.
    My scan was CLEAR! 30 months going. Had an Orthopedic appt prior to coming on holiday and will require an MRI when we get home for possible rotator cuff problem. I just don’t want to have a surgery. I’m at the point now where I don’t want to go under a knife unless it’s absolutely necessary. I’m not looking forward to next round of battles at work; I’m fighting to keep my 2 days working from home after HR list my file with my ADA accommodation. It’s just so ugly, I wish I could afford to retire. Maybe my Union will be able to help but I’m not convinced, we’ll see what happens when I return. The good news is this vacation has done me a world of good 6 days into it, sleeping past 8am, dipping in the ocean, dipping in the pool, escaping frigid cold! Here’s wishing you a wonderful Thanksgiving!
    Barbara

    Reply

    • crustacean2013
      Nov 29, 2013 @ 03:08:15

      Barbara so glad your scan was excellent! And the vacation must be good for you in every way!

      I dont know what to say about the work issue. Employment can be a cross to bear.

      My next scan is in Jan. Fatigue is my constant companion. Two weeks of diarrhea. But – other than that Im hanging in there!

      Reply

  3. Barb from MN
    Nov 29, 2013 @ 17:37:31

    You will be in my prayers throughout the New Year. Fatigue is so much less when not working, it makes a huge difference. I may have to stay the course with work until I can collect SS and that’s another 5 years. I’m just worried about recurrence but nothing I can do about that. It wouldn’t be so bad if my employer treated me better but there’s nothing I can do about that either. I’m going to enjoy the remainder of this holiday & hope for the best when I go back. I’m not shopping this weekend at all! Hang in there, take breaks when you can. Think happy thoughts of this special season that’s upon us now. Take your time and enjoy even the smallest simple joys.
    Ciao! & Cheers!

    Reply

  4. Barbara
    Dec 26, 2013 @ 03:13:30

    Hello, just a quick note to say Merry Christmas to you!

    Reply

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