Ivy's Journey with Adenoacanthoma, Endometrioid Adenocar...

Patient: Endometrial (Uterine) Cancer > Carcinoma > Endometrioid Adenocarcinoma > Adenoacanthoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 3 years ago, Female, Age: 68, Stage III

  1. 1
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 3 years ago
    Ivy's Avatar

    Surgery

    Procedure or Surgery

    radical hysterectomy; robotic; recovering faster than expected; stairs not a problem; have gained 11 pounds due to water retention--just 3 days post-surgery. Went home from hospital next day. Type 2 cancer cells; have "countable cells in uterine lymph nodes," so adjuvant chemotherapy and radiation prescribed.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  2. 2
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 3 years ago
    Ivy's Avatar

    radiation and chemotherapy prescribed

    Oh No

    I learned that follow-up chemotherapy and radiation will be necessary. Trying to be prepared, but it is difficult coming to terms with this latest news. Starting to shop for a wig, etc. I have been doing research on the web regarding the proposed treatments. It is amazing that poisonous chemotherapy and radiation are still the most-prescribed treatments. Talking with my 94 year-old mother is one of the hardest aspects. She compares every word describing my future treatments with the experiences she's shared trying to help relatives and friends who didn't survive their cancers. This makes it very hard to stay in touch with her.

    1 Comment
  3. 3
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 3 years ago
    Ivy's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Had Vaccess CT Power-Injectible Implantable Port (Vas Cath) implanted yesterday. The procedure went well, although I am really tired of health carers saying there is minimal discomfort when that's not true for everyone. This is a procedure done with twilight sedation plus novocaine injections for pain. The novocaine is the problem--not effective enough. When will they learn? The interventional radiology team seems to skimp on pain killers. Fortunately I have some real pain killers that were not used up following my robotic surgery. So don't get rid of your pain killers--you should save them for when the medical profession gets it wrong.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  4. 4
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    almost 3 years ago
    Ivy's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Taking Taxol plus Carboplatin on 3 week cycle Anti-nausea medications, as well as chemotherapy itself, cause constipation problems. Very hard to find a balance. Also, much pain in joints and muscles during 1st and 2nd weeks of cycle. Had to take oxycodone at night to be able to sleep.

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  5. 5
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    almost 3 years ago
    Ivy's Avatar

    Internal radiation

    Radiation

    Experience is strongly degrading and dehumanizing. When docs say you will be immobilized (which neither my husband nor I actually remember hearing, and we're not dummies), what they are leaving out is that your vagina will be clamped to the table. Also, lidocaine cream is insufficient if your vaginal cuff isn't completely healed, and that's all the doctor provided in advance. So angry at inhumane treatment that I will change hospitals, if necessary, to get rid of this doctor. Some damage to urinary system. Sleeping only 2.5 hours before having to get up to urinate. This was not present prior to radiation treatment. Medical profession leaves a lot to be desired with internal vaginal cuff radiation procedures. I urge patients to start complaining vocally. Nothing will change for the better until you do so.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  6. 6
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    almost 3 years ago
    Ivy's Avatar

    Allergic reaction

    Side Effects

    After second chemotherapy infusion, a reaction to the drugs caused scalp folliculitis, which is quite painful and itches unbearably. Oncologist not much help, so go to a good dermatologist if you experience the same. Takes almost 2 weeks to cure, and you can't wear a wig or scarf with all the topical medication. Hope everyone else can avoid this.

    0 Comments
  7. 7
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    Finished treatment

    Celebration

    August 24, 2012 was final treatment--adjuvant chemotherapy.

    0 Comments
  8. 8
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    removed implanted mediport

    Procedure or Surgery

    I complained to interventional radiology team about the pain level when port was inserted, so this time they did a good job handling pain levels during removal. It is so good to get rid of this thing--was always uncomfortable, and a really unpleasant reminder of the whole cancer/chemotherapy process.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  9. 9
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    CT scan showed larger lung nodules and new nodules

    Oh No

    Immense fear that cancer has metastisized.

    0 Comments
  10. 10
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    needle biopsy of lung

    Procedure or Surgery

    I asked, actually begged, the interventional radiologist to be sure they gave me adequate pain medication for this procedure. He promised to review my prior records and to take that into account. I believe this DID NOT HAPPEN. Midway through the procedure I am awake, in much pain, saying "Please stop!." The doctor in charge never appeared later so that I could review this unfortunate incident. My advice is not to trust interventional radiologists.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  11. 11
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    Biopsy showed no cancer in lungs

    Celebration

    Biopsy results were: not cancerous, not infectious, unidentifiable.

    0 Comments
  12. 12
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    Hair is back

    Celebration

    In late March, almost 6 months after last chemotherapy, I finally have enough hair to leave the wig on the wig stand and to appear in public unadorned. However, my hair is ultra short, quite grey, and quite curly. For a person used to long, straight, and no noticeable grey, this is quite a change. The person in the mirror seems like a stranger.

    0 Comments
  13. 13
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    Watchful Waiting

    Celebration

    Finally back to quarterly exams and scans. Perhaps life is coming back to whatever is the new normal.

    0 Comments
  14. 14
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 2 years ago
    Ivy's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    Still have numbness in feet and toes at 9 months post-chemotherapy. Started taking Cymbalta but not yet high enough dose to see if it will make a difference. Found out today that chemotherapy has made a measurable difference in my hearing. Hearing test May 2012 and May 2013 show noticeable decline. ENT doctor says chemotherapy "prematurely aged auditory nerves." Decided not to spring for hearing aids yet, while hoping Cymbalta might help in this area, too.

    0 Comments
  15. 15
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    almost 2 years ago
    Ivy's Avatar

    Lymphedema

    Side Effects

    Beginning to have noticeable swelling in feet, ankles, and lower legs. Have a diagnosis of lymphedema, so started sessions with a certified lymphedema therapist. Learning manual lymphatic massage and special exercises to improve the situation. Also started wearing compression stockings daily, which are quite expensive. However, the massage and exercises, plus stockings, do noticeably improve the situation. So now I just have to adjust to allocating the time required daily to attend to the situation.

    0 Comments
  16. 16
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    over 1 year ago
    Ivy's Avatar

    Anniversary

    Celebration

    Now have just celebrated the 1-year anniversary after completing active cancer treatment (chemotherapy and radiation), with check-ups and scans this month all positive. Now just need to add a more years like this!

    0 Comments
  17. 17
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 1 year ago
    Ivy's Avatar

    fast-growing cataracts

    Side Effects

    Will need cataract surgery soon. Since chemotherapy cataracts have grown extremely quickly. Have been told this is not uncommon, unfortunately.

    0 Comments
  18. 18
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 1 year ago
    Ivy's Avatar

    Infection

    Side Effects

    Have had a very hard to treat sinus infection for over 6 months. Getting better very slowly. The bug was cultured and found to be a very resistant staph infection of the type commonly picked up in hospitals. Have been told that this may also be happening due to chemotherapy's effect of suppressing the immune system.

    0 Comments
  19. 19
    • Ivy
    • Experience with Adenoacanthoma, Endometrio...
    about 1 year ago
    Ivy's Avatar

    Anniversary

    Celebration

    Have now reached 2-year anniversary of diagnosis. This means that instead of quarterly scans and tests, they will now be done semi-annually. Hooray!

    1 Comment