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Jul 18, 2024

A Little Worried 😟

This topic is about a person who has been dealing with a long history of medical issues, including gastrointestinal, gynecological, and breast-related symptoms, and is seeking guidance after being diagnosed with colorectal cancer linked to Lynch Syndrome. They have experienced persistent misdiagnoses and are now facing new cancer concerns. Here are some key points and advice shared in the discussion:

- The individual has suffered from severe constipation and chronic pain, which was initially thought to be appendicitis but was later identified as fibrous obliteration of the appendix.
- They experienced rapid weight gain and mood swings after receiving the Depo-Provera shot.
- They have recurrent liver pain, with imaging showing numerous liver cysts that were dismissed as benign.
- Despite undergoing multiple colonoscopies and imaging tests, only a single polyp was found, and they were diagnosed with conditions like gastritis, IBS, and anxiety.
- They have progressive breast pain and abnormal lymph nodes, with a previous MRI that seemed abnormal to them but was reported as negative.
- In December 2023, a new gastroenterologist diagnosed them with colorectal cancer associated with Lynch Syndrome and recommended a total colectomy and hysterectomy.
- Current concerns include a liver lesion, a bone lesion, and new hard lymph nodes, with fears of Paget’s disease or other breast cancer being missed.

The individual is understandably frightened and frustrated by the repeated failures of the local hospital system to recognize their condition. They are seeking advice from others who might have experienced similar medical neglect.

Here are some pieces of advice and insights offered:

1. Consider seeking legal counsel, not just for litigation, but to ensure proper ongoing care and address any previous medical misconduct.
2. Continue to seek second and third opinions, especially when symptoms persist, and do not rely solely on one institution's interpretation.
3. Act as your own advocate by keeping detailed medical records, researching conditions, and preparing questions for every medical appointment.
4. If local medical options are exhausted, consider expanding the search for specialists, even if it requires traveling further.
5. Consult with a rheumatologist, as overlapping autoimmune or systemic conditions might explain the cluster of symptoms.
6. Discuss the possibility of trial courses of steroids or evaluation for modern biologic therapies that have helped others with complex inflammatory disorders.
7. Above all, persistently push for answers and prioritize relief from pain and discomfort while awaiting definitive diagnoses.
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