Svaha's Journey with Uterine Sarcoma

Patient: Endometrial (Uterine) Cancer > Uterine Sarcoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 4 years ago, Female, Age: 67, Stage II

  1. 1
    • Svaha
    • Experience with Uterine Sarcoma
    almost 4 years ago
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    Surgery

    Procedure or Surgery

    total hysterectomy via robotic surgery. Absolutely awesome

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  2. 2
    • Svaha
    • Experience with Uterine Sarcoma
    almost 4 years ago
    Svaha's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I have a choice. Have the chemo and put up with the side effects or don't have the chemo. After speaking with my oncology team and research it would appear chemo/radiation/chemo will give me a better outlook so that's what I'm doing. For this round.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  3. 3
    • Svaha
    • Experience with Uterine Sarcoma
    almost 4 years ago
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    CAM (Complementary and Alternative Medicine)

    Other Care

    Adding light massage and Reiki therapy to my treatment plan twice a month with my oncologists okay. Makes me feel better

    0 Comments
  4. 4
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    External radiation

    Radiation

    only had three so far so my opinion may change as the treatment progresses.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    External radiation

    Radiation

    Daily treatments. 8 down 20 to go (3 will be internal whatever THAT means) . Tired. Exhausted and sick of this thing taking over my life.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  6. 6
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    Internal radiation

    Radiation

    halfway through 28 treatments and fatigue is setting in. Unpleasant but, hopefully, once the tx's are done the fatigue will go with it

    Painless Experience: Not Specified
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  7. 7
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    Radiation

    25 external radiation treatments now done. Minimal side effects and may I say the radiologist and his team were nothing short of professional and compassionate. Three internal radiations one of which is now done, the experience was a bit different. Internal radiation means just that and, as explained, the radiologist is trying to make sure the "vaginal cuff" isn't hiding any cancer cells. Same doctor, different team.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  8. 8
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
    Svaha's Avatar

    Radiation

    internal radiation experience, although carefully explained and I knew it needed doing, was and is a humiliating experience for me. Especially when told they wanted to take a picture of my impalement (device in place attached to a clamp which is attached to a rod that is between the legs attached to a board you're lying on). Purpose (I was told) was that accreditation made that one of their recommendations to record what was under and around a patient during treatment. My response was a strong objection and why couldn't that be WRITTEN down. The poor nurse, trying to calm me says "it's anonymous" to which I retorted "then who's chart is it going into and will be it be directly under the facial image you took of me when I came in here". My radiologist said "delete it, she's right". I think sometimes in their zeal to cure the cancer our medical teams forgets that there are actual people in these bodies along WITH the cancer.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  9. 9
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    Radiation

    finished 25 external radiation treatments and 3 internal. Minimal side effects for both but the last internal treatment was uncomfortable. My radiologist and his team have been absolutely wonderful (and I've recommended his service to a woman newly diagnosed with breast cancer who will require radiation).

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  10. 10
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    Radiation

    I would ask my fellow travelers who have had radiation for uterine cancer; do you sometimes feel your radiation treatment team forgets there's a person living in your body along with the cancer? That sometimes you're no more THAN a body with uterine cancer (or any kind of cancer) kind of depersonalized? I don't know. Maybe it's me but that's how I feel sometimes. How about you?

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    2 Comments
  11. 11
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
    Svaha's Avatar

    Drug or Chemo Therapy

    Kintsugi, the Japanese art of repairing a broken ceramic piece with gold or silver making it even more beautiful than before it was broken. My friend thought it a wonderful metaphor for what I'm going through. So do I and I'd like to share it with you all.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  12. 12
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Last chemo yesterday 09/19. Took 5 hours 30 minutes as usual taxol takes forever. When I spoke with my oncologist the day before, I asked about getting the port removed and we negotiated that I'd have the CT scan next month to make sure all the cancer cells are banished. Thanks heavens for my chemo nurses. I was making my appointments as I was being hooked up and Beth said, "no no, you want to do the CT scan just before you come back in for the monthly follow-up to give this chemo it's chance to do it's thing so you get an accurate scan " I said "well, when the called they made it seem Dr K wanted it done ASAP. I said" THANK you how am I supposed to know that" and she said "yes, they should have asked you questions and then TOLD you". Today is the neulasta shot, I'll have a lousy next week and then I'll start to feel good again. My friends are taking me on a celebratory beach weekend next month. I am REALLY looking forward to that

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  13. 13
    • Svaha
    • Experience with Uterine Sarcoma
    over 3 years ago
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    Finished treatment

    Celebration

    results of the ct scan are back. Only thing the oncologist saw was a slightly enlarged (one) lymph node in y chest. He says he's not overly concerned with it but since the cancer invaded two pelvic lymph nodes it bears watching and I'll have another ct scan end of December to see if it does anything. So far, so good:-) Off to the beach next week for a weekend with my friends in celebration

    2 Comments