abrub's Journey:

Survivor: Rare Cancers > Appendix Cancer > Mucinous Adenocarcinoma of the Appendix

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 10 years ago, Female

  1. 1
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Surgery

    Procedure or Surgery

    Routine hysterectomy had surprise finding of appendix cancer. Tumor encompassed my rt ovary, but pathology showed that it originated in the appendix; that the ovarian tumor was a metastasis.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Diagnosed

    Oh No

    Learning I had cancer on returning to my room from "routine hysterectomy"

    0 Comments
  3. 3
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Decision Point

    Met with various consultants/specialists to pick a course of treatment.

    0 Comments
  4. 4
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Surgical debulking, placement of belly port

    Procedure or Surgery

    Surgery included omenectomy, double colon resection (sigmoid colon and right hemicolectomy, plus a section of my small intestine.) Fortunately, no bag, and I now function fully normally. Complications from surgery/treatment impacted recovery. 10 days in hospital became 28+ Surgery was immediately followed with intraperitoneal chemo, and my bowels immediately shut down. I suffered ileus for about 3 weeks (NG tube, npo). My incision also became infected, and the staples had to be removed, leaving it to heal from the inside out, and leaving me with a very ugly "second belly-button" scar. This topped off with adverse drug reactions kept me a total mess for my long hospitalization. When I arrived home, I couldn't lift my head off the pillow. Long, slow, arduous recovery.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  5. 5
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Intra-peritoneal chemotherapy

    Drug or Chemo Therapy

    4 liters of Chemo was delivered directly into my belly over 3 days, every other week, starting immediately post-op. Chemo was FUDR, and they'd administer 2 liters on day one, and one liter each on days 2 and 3.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  6. 6
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Other

    Side Effects

    Chemical peritonitis - severe pain. Pain was so severe that chemo had to be delivered in conjunction with high doses of dilaudid. I would continue on the dilaudid for a week post chemo.

    0 Comments
  7. 7
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Decision Point

    My drs decided that the pain I was suffering might indicate that the IP chemo was doing more damage than good. They decided to stop treatment after 5 of a planned 8 cycles, and proceed with systemic chemo.

    0 Comments
  8. 8
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
    abrub's Avatar

    Removal of belly port (for IP chemo).

    Procedure or Surgery

    My belly port was removed in the clinic - a minor surgical procedure. However, once it was removed, I stopped my spontaneous gasping. It had been irritating my diaphragm. Glad to get that out!

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  9. 9
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    One month after my belly port was removed, my chest port was placed. Actually, it was a double procedure. The port was implanted, and immediately twisted, causing me great pain. The implanting surgeon reviewed the CT scan I had after the port was placed, and learned that it was twisted, so I was admitted to the hospital overnight. The next morning, the port was removed and replaced, leaving me with a large scar from all of the work done.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  10. 10
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Folfox 6 + Avastin; severe side effects; 7 of planned 12 cycles.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  11. 11
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Decision Point

    To continue or discontinue systemic chemo. The side effects were unbearable, and all my drs agreed that we'd never know if the chemo was helpful. (Effects of chemo on my type of appendix cancer are unknown.) The known problems versus the unknown benefit, plus the assurances that my tumor-type was low-grade, slow-growing, led me to the decision to discontinue chemo after round 7.

    0 Comments
  12. 12
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Removal of chest port

    Procedure or Surgery

    Finally, a procedure without complications! However, my veins were so painful from the chemo that I couldn't tolerate the IV, and therefore had the removal done with just local anaesthetic, which was fine by me.

    Went as Expected: Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  13. 13
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
    abrub's Avatar

    Neuropathy, Hand-Foot, 1st bite pain, nausea, wt gain

    Side Effects

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

    0 Comments
  14. 14
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Finished treatment

    Celebration

    Treatment complete. Now on lifetime follow-up

    0 Comments
  15. 15
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Surgery

    Procedure or Surgery

    2 years after completing chemo (3 years after surgery) I had surgery to repair my incisional hernias and a scar revision (from an infection post-op). I was warned that this would be as painful as my resection - they were right. Long slow recovery, but a complete recovery.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  16. 16
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    CT scan

    Procedure or Surgery

    Clear CT scan - dr released me for next scan in 18 months!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  17. 17
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 5 years ago
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    Remission

    Celebration

    Looking to long-term remission now. No more scans for 18 months!

    1 Comment
  18. 18
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    about 5 years ago
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    Extra CT scan

    Procedure or Surgery

    Had a CT scan well in advance of my next scheduled one (supposed to be April 2013) but my dr wanted to investigate the cause of my belly pain. CT was perfectly normal, so we can proceed under the assumption that my pains are caused by a belly full of adhesions - something I'll just have to live with. (Dr. wanted to be sure that the pain wasn't a new tumor growing on the surgical mesh he placed when repairing my hernia 2 years ago.)

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  19. 19
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    about 5 years ago
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    Anniversary

    Celebration

    5 years since Diagnosis, and I'm doing great! Received an email from my Dr. re last week's CT scan: "Nice talking to you yesterday about your normal CT scan. You are boring the radiologists to tears, and it is wonderful. Looking forward to seeing you in the fall." I'm celebrating being boring at 5 years out!

    3 Comments
  20. 20
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    almost 5 years ago
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    New incisional hernia?

    Oh No

    I felt something - I think I have another hernia (incisional abdominal), which may mean more surgery is in my future. Getting checked out on Friday.

    1 Comment
  21. 21
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 4 years ago
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    Recalled from my mammo

    Oh No

    Do I now have breast cancer to add to the mix? I won't know until at least Sept. 25.

    6 Comments
  22. 22
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 4 years ago
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    Breast needle-core biopsy

    Procedure or Surgery

    While the procedure itself went more easily than expected, the conclusion was "highly unusual" - per the dr.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  23. 23
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 4 years ago
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    Turns out, there was another mass that was missed in u/s

    Oh No

    While the biopsyitself went more easily than expected, the conclusion was "highly unusual" - per the dr. We learned after the biopsy that I have (at least) 2 breast masses: one showed on the mammogram; one on the ultrasound. The assumption was that the one on the ultrasound was the one on the mammo. However, post-biopsy, when they did another mammogram, with the marker in place, they found that they'd biopsied a different area. Now I need a surgical excision.

    0 Comments
  24. 24
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 4 years ago
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    Benign

    Celebration

    The breast masses were benign. That other portion of my cancer journey is drawing to a close, as I heal from the lumpectomy.

    2 Comments
  25. 25
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 3 years ago
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    MRI - pelvis/abdomen for f/u

    Procedure or Surgery

    A long (1 1/2 hour) MRI scan. Shoulders were in pain from lying with arms overhead for extended period. Dealt with claustrophobia by wearing an eye mask, which helped tremendously.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  26. 26
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    over 3 years ago
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    Still NED. Next scan in 18 months!

    Celebration

    Appendix cancer is still in remission; perhaps permanently. Next scan in 18 months. However, new incisional hernia to track.

    1 Comment
  27. 27
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    9 months ago
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    Cancer is back/Recurred

    Oh No

    As my dr is talking to me about complete discharge from follow-up at 9 years out, my radiology report from the MRI I just had comes in, and shows a new tumor. Back to the salt mines...

    1 Comment
  28. 28
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    8 months ago
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    Surgery

    Procedure or Surgery

    10.5 hours of surgery to fight thru adhesions from 3 prior surgeries. Results are not all clear. There was a discrete tumor that was removed,but also random cancerous cells scattered.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  29. 29
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    8 months ago
    abrub's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    IntraPeritoneal post-op for my recent recurrence caused such pain (chemical peritonitis) that I couldn't complete the 3-day cycle. It also was a major setback in my surgical recovery, leaving me worse than I was the day after my 10.5 hour operation 2 weeks ago.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  30. 30
    • abrub
    • Experience with Mucinous Adenocarcinoma ...
    8 months ago
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    Cancer has spread/Metastasized

    Oh No

    Pathology from recent surgery was not clean. Random malignant cells were found in the tissue, not connected to the tumor. Next steps yet to be determined...

    0 Comments