BrandenC's Journey:

Patient: Sarcoma - Adult Soft Tissue Cancer > Fibrosarcoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 13 years ago, Male, Age: 29, Stage Recurrent

  1. 1
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
    BrandenC's Avatar

    Diagnosed

    Oh No

    When I was first diagnosed I was 16 y/o. I was going in to have surgery on a bad ankle contraction and when they put me under anesthesia and muscle relaxers a section of my leg didn't relax. So I was woken up, a tad upset, and then proceeded to have an MRI of my R lower leg. It showed a large mass (about thie size if a 20oz soda). Fairly quickly I had a biopsy which the pathology showed as a desmoid tumor. Then I had my first surgery.

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  2. 2
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    Surgery

    Procedure or Surgery

    First surgery. Removal of mass. Last most of my gastrocnemeis and a few other supporting muscles.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    Decision Point

    To under go Rad therapy or not. I decided at this point to not.

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  4. 4
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    Cancer is back/Recurred

    Oh No

    Second recurrence, large mass behind my r knee.

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  5. 5
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
    BrandenC's Avatar

    Surgery

    Procedure or Surgery

    It has removed along with the rest of my gastroc and other muscles. This was 6 months after my first surgery.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  6. 6
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    External radiation

    Radiation

    Went through 30 rounds of radiation. 60 gray. Horrible side effects. Wounds healed then reopened. Not the happiest person on earth at this moment.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    Cancer is back/Recurred

    Oh No

    This is my second recurrence. Located above right knee in biceps femoris. Start of senior in high school. Chose not to have surgery for awhile. Was accepted to Marquette University.

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  8. 8
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    Cryo/acidic acid-ablation

    Procedure or Surgery

    Since I was traveling to NYU medical center this was a pain. Went through 5+ rounds. Showed tumor necrosis after the last one.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  9. 9
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Nexavar. Don't know if it worked or not. Experience hand/foot syndrome (blisters on fingers). Was on for a total of 4 months.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  10. 10
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
    BrandenC's Avatar

    Surgery

    Procedure or Surgery

    During my senior year of college. It was a long surgery (so I'm told) but the tumor was removed with negative magrins. (sic). Fairly long recovery. But I had a knee contracture from the tumor and that was resolved. So overall a positive thing. However my biceps femoris was removed along with other muscles. Still on nexavar at this time.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  11. 11
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
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    Cancer is back/Recurred

    Oh No

    Small nodule found in upper R leg of unknown pathology. (later determined to be recurrent disease). Was starting at UW-Milwaukee to work to getting into grad school for either PA or AA at this time.

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  12. 12
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
    BrandenC's Avatar

    Surgery

    Procedure or Surgery

    Removed tumor fairly quickly after discovery, due to it pushing on my sciatic nerve. Luckly the incision was in a non-irradiated area. Surgery went well. Back to work in 4 weeks. Still at UW-M. (four weeks ago from this posting) Frequent pain however. Only an day surgery visit in the end, but I think the MDs wanted me there longer.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  13. 13
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
    BrandenC's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Again nexavar. 6 month course of treatment due to microscopic postive margins.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  14. 14
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
    BrandenC's Avatar

    Fatigue (tiredness)

    Side Effects

    I can get through the things I need to do, but not much beyond that.

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  15. 15
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 5 years ago
    BrandenC's Avatar

    Hand foot syndrome

    Side Effects

    Hands started peeling yesterday. Happened last time I was on this med as well.

    1 Comment
  16. 16
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    about 5 years ago
    BrandenC's Avatar

    No sign of disease 6 months after surgery

    Celebration

    Since I had positive margined after my last surgery I was alittle worried about this MRI but it was clean!!! Woooo!

    2 Comments
  17. 17
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    almost 5 years ago
    BrandenC's Avatar

    Clean MRI

    Celebration

    My 9 mo post surgery MRI was clean! The longest period of time since my dx 8 yrs. ago without a recurrence! Next MRI in january.

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  18. 18
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    Little nodule found just above my knee during my last MRI. Sucks. Went a year plus with out a recurrence though.

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  19. 19
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 4 years ago
    BrandenC's Avatar

    what to do?

    Decision Point

    I have done almost everything I can with this thing and it still recurs... Since it is in my previous radiation field, it rules out radx. Maybe I just will have to finally go through IV chemo.

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  20. 20
    • BrandenC
    • Experience with Fibrosarcoma, Adult S...
    over 3 years ago
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    Cancer is back/Recurred

    Oh No

    multiple tumors in my right leg. one larger one in between the femur and sciatic nerve and multiple smaller ones. Not all to happy about this. Talked to my oncologist and will be discussed at tumor board. Maybe imatinib or ablation.

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