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Jun 05, 2009

My Battle with Adenocarcinoma: A Personal Journey

This topic is about a personal journey through a challenging medical experience involving cervical adenocarcinoma, a type of cancer, at the young age of 29. It details the progression from a missed diagnosis to undergoing a major surgery called pelvic exenteration. Here’s a breakdown of the journey and some advice and insights shared by others who have faced similar challenges:

- In June 2007, during a routine physical and PAP test, symptoms like pelvic bleeding and pain were dismissed after normal results.
- By October 2007, an OB/GYN discovered a cervical tumor, and a biopsy confirmed it was adenocarcinoma.
- In December 2007, a planned fertility-sparing hysterectomy was halted when cancer spread to the lymph nodes was found. Instead, a lymph-node dissection and ovarian transposition were performed.
- From January to February 2008, the treatment included 25 external and 5 internal radiation sessions, along with 7 cycles of chemotherapy, which caused severe damage to the bladder, bowel, and rectum.
- In March 2008, ovarian failure was diagnosed, leading to lifelong hormone therapy with estrogen and progesterone.
- Throughout 2008, there were several emergency room visits due to severe abdominal pain, cellulitis, and extensive lymphedema, resulting in a 7-day hospitalization.
- In August 2008, a radical hysterectomy was performed. The ovaries were found immovable under the ribs, and a torn bladder required a 3-month Foley catheter. An adverse reaction to medication caused hallucinations and a reopened incision.
- By October 2008, a bowel obstruction required a 32-inch small-bowel resection.
- In January 2009, dual fistulas were discovered, leading to a temporary colostomy. Multiple biopsies revealed the cancer had returned.
- On March 4, 2009, a pelvic exenteration was scheduled, involving the removal of several organs and the creation of a permanent colostomy and urostomy.
- By April 22, 2009, a 14-hour surgery was completed, involving three teams. The recovery included post-op hallucinations, a 12-day hospital stay, and ongoing challenges like chronic pain, mobility limits, and lifestyle adjustments.

Advice and insights from others include:

1. Emotional and Peer Support
- Many people have shared similar experiences with cancer, fistulas, and ostomies, emphasizing that you are not alone. They encourage open conversations and offer support.
- It's important to stay positive and recognize your personal strength, even when feeling robbed or depressed.

2. Practical Support
- There is a local ostomy social/support group in Pacific Beach, San Diego, which can help ease the adjustment by connecting with fellow ostomates.
- A long-term ostomate with 20 years of experience offers to share day-to-day coping tips.

3. Medical Follow-up
- Ongoing surveillance, such as CT scans every three months, is crucial for early detection of any recurrence.

4. Physical and Sexual Health
- Scar tissue from vaginal reconstruction can narrow the opening, but additional surgeries may help restore function. Relationships may require patience and adaptation.

5. Personal Perspective
- Everyone's journey and tolerance levels are unique. It's important not to feel ashamed of your struggles, regardless of how tough someone else's story may seem.
See full discusison
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