so4getful's Journey with Hemangioendothelioma

Patient: Sarcoma - Adult Soft Tissue Cancer > Hemangioendothelioma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: about 5 years ago, Male, Age: 48, Stage IV

  1. 1
    • so4getful
    • Experience with Hemangioendothelioma
    almost 5 years ago
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    Bronchoscopy

    Procedure or Surgery

    2008, 2009, and again in 2010 to find out reason for chronic hemoptysis.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  2. 2
    • so4getful
    • Experience with Hemangioendothelioma
    almost 5 years ago
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    Misdiagnosed

    Oh No

    2010, Diagnosed with "idiopathic pulmonary haemosiderosis." In essence, this means "bleeding in the lungs from an unknown cause." Doctor told me to keep an eye on it, and if the bleeding became severe (more than half-a-cup or enough to choke me) to go to a hospital, and they may need to remove part of my left lung; "but for now, don't worry about it."

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  3. 3
    • so4getful
    • Experience with Hemangioendothelioma
    almost 5 years ago
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    Decision Point

    December 2011; Hemoptysis now fairly aggressive for about 4 months straight; feeling winded after coughing/hemoptysis attacks. Not enough to send me to an emergency room, but enough to scare the heck out of me. Wife talks me into seeing a new Pulmonologist. New doctor orders a lung biopsy, "asap..."

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  4. 4
    • so4getful
    • Experience with Hemangioendothelioma
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    Lung biopsy. Feb 2012. Went well. recovery was rougher than I expected. Great doctors at Cleveland Clinic in Weston FL. Super pleased with the care and attention at this facility.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  5. 5
    • so4getful
    • Experience with Hemangioendothelioma
    almost 5 years ago
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    Diagnosed

    Oh No

    Pathology comes back Epithelioid Hemangioendothelioma. Surgeon never heard of it, didn't even know it was cancer. I was told about it over the phone at work; figured I'd look it up later. Wife looked it up sooner and called me back and told me I needed to read what this was... It's a rare cancer of the lining of my vascular system; slow moving; incurable; in both my lungs. Scans showed indeterminate masses in the liver and on the poles of my left (partial) kidney as well. Stage 4 with hemorrhagic symptoms.

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  6. 6
    • so4getful
    • Experience with Hemangioendothelioma
    almost 5 years ago
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    Consultation

    Other Care

    Doctors here never heard of EHE. Through research I found a hospital with some experience with this type of sarcoma: The Dana-Farber Cancer Institute in Boston, MA. Called them, made an appointment with a specialist there for mid March 2012. Gathered medical records from past 10 years (at this point, suspected past Renal Cell Carcinoma from 2003 was EHE and misdiagnosed) had all images, studies, and slides sent to DFCI.

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  7. 7
    • so4getful
    • Experience with Hemangioendothelioma
    almost 5 years ago
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    Decision Point

    EHE is a slow moving cancer. Even though I am symptomatic, other than the hemoptysis I'm not presenting as "sickly," and this episode of hemoptysis has subsided for now. The decision of when to start "treatment" (read, chemo) is up to me. Doctor in DFCI didn't seem to push in either direction, and I figured if I was in great immediate danger, he would have pushed for the treatment option right away. Instead, we came up with a plan: CT scans every 3 months; bloodwork to check for anemia every month (to monitor how bad the hemoptysis is), and reevaluate after each. At some point, he expects I will require treatment. Coincidentally, my renal cell carcinoma slides are confirmed that they are NOT epithelioid hemangioendothelioma; and doctor thinks we can really only trace this back as far as the hemorrhagic symptoms beginnings; so I've had it maybe 5 years instead of 10 to 12 years. But this does also mean that I've had 2 distinct cancers. I should play the lotto more often!

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  8. 8
    • so4getful
    • Experience with Hemangioendothelioma
    over 4 years ago
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    To Chemo or Not to Chemo, that is the Question...

    Decision Point

    September 2012: Fast Forward about 7 months. Scans are "mostly stable" however, they show significant thickening of the Pleural lining around my right lung. Adding to that are new symptoms of pain in the same general area when I breathe deeply. Pulminologist and Oncologist both think it points to a progression of the disease and the question is raised to start or not start Chemo... The pain has been progressing. And while I still feel strong, my wife and I decided that starting now would be best instead of waiting until the pain and breathing is more difficult. Port Implant Scheduled. Chemo beginning 2 weeks after that.

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  9. 9
    • so4getful
    • Experience with Hemangioendothelioma
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  10. 10
    • so4getful
    • Experience with Hemangioendothelioma
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    October 2012: Started Doxorubicin, 1 time a week, for 3 weeks, then rest 1 week, then 3 more weeks. On week 2 so far. Side effects MUCH LESS than expected (so far). A little loss of equilibrium, and lots of fatigue, but really less than expected.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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