Desmoid Tumors: Concerns and Care for Patients

Small intestinal fibroma

My father (72 years old) has been in and out of Chi Mei Hospital since the end of March this year, and as of May 7, he has not been discharged.
His first surgery was a minimally invasive abdominal procedure, where the doctor mentioned that three incisions were made in the abdomen to relieve a bowel obstruction.
After the minimally invasive surgery, he returned home but experienced abdominal pain again just a few days later.
He went back to Chi Mei, where a nasogastric tube was inserted.
The doctor stated that he could not eat or drink, and they would observe him.
This observation lasted nearly two weeks, during which he underwent continuous enemas.
Eventually, the decision was made to perform an open surgery, where the doctor explained that they would open the abdominal cavity to clear intestinal adhesions.
The day after the surgery, my father developed delirium and was extremely unstable for five days.
Due to rapid breathing, he was admitted to the intensive care unit (ICU).
During this time, the doctor again stated that he could not eat or drink.
After six days in the ICU, he was transferred to a general ward, where he still could not eat or drink.
He stayed there for four days before the doctor informed my mother that he had a small intestinal fibroma.
The pathology report stated "desmoid fibromatosis (or desmoid tumor), mesentery of small intestine, segmental resection." The doctor mentioned that there is currently no cure for this condition, and my father's delirium has not fully resolved.

I would like to ask the following questions:
1.
Is it normal to be unable to eat or drink for over a month while hospitalized?
2.
If there is no cure, would it be better for my father to be discharged to see if his delirium improves at home, where he could have a liquid diet for nutrition and drink water? If he experiences severe pain again, can he be taken back to the hospital?
3.
Do you know any experienced doctors who specialize in small intestinal fibromas that you could recommend?
4.
Although the doctor said that the small intestinal fibroma is benign, he also mentioned that it can easily spread, and there is a high chance of the tumor obstructing the intestine again.
If there is another obstruction, would the only option be to perform another open surgery for removal? I am very concerned about my father's potential for recurrent delirium and whether being in a state of confusion could lead to dementia, especially since he has Parkinson's disease.
I have searched online for information about small intestinal fibromas, but there is not much available, and I have also looked for fibromas in Taiwan's e-hospital, but most information pertains to thoracic fibromas.
I am feeling very anxious and unsure of what to do, and I do not have any familiar doctors to consult.
I hope to receive your response, and I greatly appreciate it!

Miss Huang, 20~29 year old female. Ask Date: 2021/05/07

Dr. Hu Ziren reply Oncology

1.
Inability to eat may be caused by adhesions resulting from surgery.

2.
If the adhesions are removed and gastrointestinal function is normal, with no persistent vomiting or normal bowel movements, then the patient can gradually resume eating.

3.
If the physician advises against eating, it may be due to the gastrointestinal motility or clearance function not yet being restored.

4.
Delirium is quite common in the elderly, especially among those who have been admitted to the intensive care unit.
If the patient's condition is stable (including the ability to eat normally or receive tube feeding), home care is certainly the best option.
If the physician still does not recommend discharge, it indicates that the patient may have some urgent issues or potentially life-threatening complications that have not yet been resolved, or the patient's condition is not yet stable.
If the concern is solely about delirium, a psychiatric consultation can be arranged during the hospital stay.
Generally, delirium is classified as an acute condition (caused by factors such as infection, electrolyte imbalances, malnutrition, medications, etc.), and resolving the potential triggering causes can lead to recovery.
It is quite common for patients with dementia and Parkinson's disease to experience delirium during hospitalization; therefore, while delirium does not cause dementia, dementia can easily complicate acute delirium.
It is advisable to communicate and discuss with the attending physician to determine the best medical management for the patient.

Reply Date: 2021/05/07

More Info

Desmoid tumors, also known as desmoid fibromatosis, are benign but locally aggressive tumors that arise from connective tissue. They can occur in various parts of the body, including the abdomen, and are characterized by their tendency to infiltrate surrounding tissues, which can lead to complications such as bowel obstruction. Given your father's recent medical history and the challenges he is facing, I will address your concerns systematically.

1. Prolonged NPO Status (Nothing by Mouth): It is not uncommon for patients who have undergone abdominal surgery, especially involving the intestines, to be placed on a NPO status for an extended period. This is typically done to allow the gastrointestinal tract to rest and recover, especially after surgeries that involve manipulation of the intestines. However, the duration should be closely monitored by the healthcare team. If your father has been unable to eat or drink for over a month, it is essential to discuss this with his medical team to ensure that he is receiving adequate nutrition, possibly through intravenous fluids or other means.

2. Home Care and Nutrition: If the medical team believes that your father's condition is stable enough for discharge, transitioning him to a home environment could potentially aid in his recovery. A familiar setting may help alleviate some of the psychological stress associated with hospitalization, which could, in turn, improve his mental state. However, it is crucial to have a clear plan in place for his nutrition and hydration. Starting with a liquid diet and gradually introducing soft foods may be appropriate, but this should be done under the guidance of his healthcare providers. If he experiences severe pain again, returning to the hospital would be necessary.

3. Finding a Specialist: For desmoid tumors, it is advisable to seek out a medical center or oncologist with experience in treating these specific tumors. In Taiwan, major hospitals often have specialized oncology departments. You might consider reaching out to institutions known for their cancer treatment programs, such as National Taiwan University Hospital or Taipei Veterans General Hospital. They may have specialists who are familiar with desmoid tumors and can provide a comprehensive treatment plan.

4. Concerns about Recurrence and Mental Health: While desmoid tumors are classified as benign, they can indeed recur and cause significant complications, including bowel obstruction. If your father experiences another obstruction, surgical intervention may be necessary. It’s important to maintain regular follow-ups with his healthcare team to monitor for any signs of recurrence. Regarding his mental health, prolonged hospitalization and the stress of his medical condition can contribute to delirium or confusion, especially in older adults or those with pre-existing conditions like Parkinson's disease. It is essential to address these concerns with his doctors, as they may recommend interventions to help manage his cognitive function and overall mental health.

In summary, while desmoid tumors can be challenging to manage due to their potential for local recurrence and complications, a multidisciplinary approach involving surgical, medical, and supportive care can help improve your father's quality of life. Open communication with his healthcare team is vital to ensure that all concerns are addressed and that he receives the best possible care.

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