FREQUENTLY ASKED QUESTIONS BY PATIENTS ABOUT PERITONEAL PSEUDOMYXOMA

No, it is a very rare disease. Each year, about 1-2 people out of every one million will be diagnosed.

Also read: Is pseudomyxoma a common disease?
Yes. Most patients with pseudomyxoma are cured with maximal cytoreduction surgery with HIPEC if treated appropriately.

Read more: Pseudomyxoma peritonei: a journey toward a cure
Yes. HIPEC for pseudomyxoma is among the most extensive procedures in medicine. Surgeries often exceed 12 hours in duration.
Yes. The patient needs to receive special preparation in physiotherapy and nutrition to safely tolerate the procedure.
Despite being a very extensive procedure, the surgical risk—when the treatment is performed at reference centers—is comparable to that of other more routine abdominal surgeries. Some patients believe that the risk of death in such surgery is above 50%. Others even estimate figures close to 90%.

In fact, the risk of death in this procedure is now below 5%.
Not all, but the majority of patients can indeed undergo surgery. Some patients seek medical attention so late that pseudomyxoma has compromised all organs, primarily the entire small intestine, making it impossible to operate curatively, only palliatively.

The most common situation where surgery is contraindicated is when the tumor itself is operable, but the patient is very elderly or has serious health issues, making the surgical risk unacceptable.
In patients who cannot undergo surgery, palliative intravenous chemotherapy is offered. Unfortunately, the results are very poor, with most patients showing no response. In these cases, the disease is universally fatal.
It is performed through an incision (open surgery, called laparotomy). This is necessary to adequately address all regions of the abdomen. There are a few very rare exceptions where the patient has minimal disease, and the surgery becomes so simple that it can be performed laparoscopically.
No. It is a surgery that, despite being extensive, tends to have little bleeding. Less than a quarter of patients require a transfusion during the surgery.
Almost all patients leave the surgery awake, extubated (without the tube in the trachea), in good general condition, with good blood test results, without having received a transfusion, and with a low dose of medications (or none) to maintain stable blood pressure.
Between 3 to 5 days, depending on the speed of recovery.
Most patients remain hospitalized for 2 weeks after surgery. This time is necessary to allow the body to recover and return to a normal diet.
If the patient has undergone a routine recovery, they will be discharged from the hospital completely independent, walking normally, without drains, and able to maintain their personal hygiene on their own.
There is a recovery period to be observed after discharge. Most people are able to return to work (as long as it does not involve significant physical effort) about 3 weeks after discharge.
No. There is no need to supplement the treatment with postoperative chemotherapy. There are very rare exceptions, which will be explained by the doctor during the consultation.
Yes. There is a possibility of performing a fertility-sparing surgery. There are different techniques available. Of course, in some women, this may not be possible, but the situation is always assessed on a case-by-case basis.
Like any tumor, we only know if the disease is cured after a period of monitoring, which is long in this case. The recommended follow-up period and control examinations is 10 years.

NOTE

The explanations above are based on the best scientific evidence available currently and the extensive experience of the Peritoneal Oncology Group. Details and technical routines of the treatment may vary from center to center.
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