Your first visit with the St. George Peritonectomy & Liver Cancer Unit (STGP&LCU)
Once you have made it to us you will most likely have been recommended for surgery. During your visit with us we will discuss the surgery with you, how to enrol for surgery, consenting for surgery, your quality of life and the risks associated with surgery.
Topics of discussion
Prior to going ahead with a peritonectomy, you will undergo assessments to determine your suitability for surgery. The work-up includes consultations with a surgeon and medical oncologist, anaesthetist and nurse consultant from the peritonectomy team. You may be required to have up-to-date scans performed: these may include PET scan, CT scans and special imaging of your liver (either a MRI with Primovist® contrast or simultaneous CT scan and angiogram). Radiology studies may not be reliable in assessing the PCI/tumour burden so occasionally a laparoscopy will be organised to formally calculate your PCI or to collect a tissue sample for diagnostic purposes.
You will have blood tests to determine your general health and nutrition, e.g. liver, and kidney function, current cancer tumour makers, blood type and presence of antibodies as well as checking, so as to implement a plan, for any undiagnosed blood bourne viruses e.g. hepatitis and HIV. We closely screen for any signs of anaemia e.g. low haemoglobin or iron which may need to be corrected along with poor nutrition prior to the operation so as to improve your recovery post-surgery. We will discuss with you during your appointments. Swabs for anti-biotic resistant bacteria will also be taken. We may also review any biopsy or pathology specimens in our laboratory that have been taken during past surgery or investigations.
You will also have appointments with a dietitian, stomal therapist, social worker and physiotherapist. We often seek the expertise of our palliative care nurse consultant as needed to help manage symptoms such as pain. If you have other medical problems you may need to see a relevant medical specialist e.g. respiratory physician or cardiologist. Once these assessments are complete, we will discuss your results in a multidisciplinary team meeting. We will then talk to you and your family about the kind of treatment we recommend for you.
Risks and side-effects of peritonectomy
Your doctors may decide that it is not appropriate to go ahead with the proposed surgery if the tumour is more extensive or more difficult to remove than expected. It is our policy to be honest with you, and in the event of inoperable disease we will inform you and your family.
The risks of this procedure are substantial. The main problems arise due to the extent of the surgery as well as the need to recover from both the chemotherapy and the surgery at the same time.
30-40% of patients undergoing peritonectomy and HIPEC will experience a major complication. Major complication is defined as requiring return to intensive care or operating theatre, requiring a procedure in interventional radiology or any complication that significantly prolongs stay in hospital. The St George Peritonectomy team is very experienced in monitoring for and managing such complications.
Blood and blood product transfusion
Sometimes patients lose a lot of blood and blood clotting factors during the operation and these will need to be replaced during surgery. It is common for patients to require approximately 4 units of blood but sometimes, requirements can exceed this number depending on the extent of the surgery and intra-operative bleeding.
After the surgery you will have a wound, drains and an intravenous drip. Each of these sites can carry the risk of infection. Should you notice any new pain, redness, ooze or swelling e.g. at a drip site, please let a member of staff know. We will closely observe you for any signs of infection by monitoring your blood tests, temperature and how you feel in general. A CT scan may be organised following a change in symptoms or if you are not progressing as predicted. The purpose of the scan is to look for any source of infection such as pocket of fluid in the abdominal space or in the chest. Treatment may be a course of antibiotics, the removal of some surgical clips to allow drainage of fluid from the wound or it may require a fine bore drainage tube to be inserted under local anaesthetic in radiology. This tube would remain in position for a few days until the collection of fluid has been drained. Drainage procedure may be repeated as necessary during your hospital stay should further symptomatic collections of fluid occur. This is a very common procedure following peritonectomy surgery which most patients at some stage require. Infrequently, a return to theatre may be required for an open drainage of an infected abdominal collection and/or washout procedure.
We recommend you have access to a thermometer post discharge to monitor your temperature short term.
It is common that some bowel is cut out and the remainder needs to be joined back together (this is known as ‘anastomosis’). The chemotherapy may slow down the healing of the bowel join. If healing is slow and a leak from the bowel occurs, this is a major problem, and it may cause pain and infection. In about 5% of people the bowel contents can erode through tissue and end up coming out of the skin, bladder, vagina or surgical drain (this is known as a ‘fistula’).
If this occurs it can be managed by resting the bowel, keeping you ‘nil by mouth’ and feeding artificially via a drip until it heals. Sometimes, though rarely, it will require an operation to fix. Patients can feel physically well with a fistula, but this complication is frequently accompanied by feelings of frustration or anxiety as it may extend the hospital stay for several weeks. Please continue to communicate with us throughout your stay, let us know how you are feeling so we may be able to help you i.e. if you anxious or don’t understand what is happening
Slow bowel recovery
After peritonectomy your bowel will stop working (this is known as a ‘paralytic ileus’) and you will not be able to eat until the bowel starts to work again. This usually takes approximately 10 days, but in some cases, this takes considerably longer and delays your recovery. In this instance artificial intravenous feeding may be commenced.
After any operation you will be given sufficient pain relievers to keep you comfortable. This requires careful attention on the part of the surgical doctors and pain team, and it may take some time for them to get the optimum treatment combination. The postoperative (cold) intraperitoneal chemotherapy can occasionally cause some additional pain, but this can usually be dealt with by giving extra pain killers. It is important that you let us know when you have pain so that we can deal with the problem as early as possible. We do not want pain to hinder your mobility. You need to be able to mobilise freely to facilitate your recovery.
On occasion, as a result of significant bowel resections, patients may need supplemental intravenous (IV) fluids at home to maintain hydration. In this instance the patient may be educated to follow a home IV fluid protocol.
Chemotherapy side effects
The most serious potential side effect of chemotherapy is the lowering of your blood count. This makes you susceptible to bleeding or infections, which can be particularly problematic because the operation also makes you susceptible to these issues. Given the doses we use, most patients do not have problems with their blood counts. Other side effects (although rare when chemotherapy is given this way) include hair loss (uncommon and temporary), a sore throat and mouth, diarrhoea, nausea and vomiting.
Dihydropyrimidine dehydrogenase (DPD) enzyme deficiency
Depending on which chemotherapy agent we plan to give, we may advise you to proceed with a blood test, at your own expense. This is to determine if you are in the rare population group (0.1%) that completely lacks the DPD enzyme which breaks down a commonly used drug called fluorouracil. This deficiency can potentially lead to a life threating drug toxicity if fluorouracil cannot be metabolised. It is estimated that between 3-8% of the population may have up to 50% DPD inefficiency. This rare risk will be discussed during your meeting with the oncology consultant and further information be given if relevant to your case.
It is not uncommon for wounds to breakdown post-surgery due to nutritional deficiency, infection or delayed healing due to the chemotherapy. This is most often seen in the second week when it coincides with, but is not related to, the removal of the surgical staple/clip. It may range from slight weeping or superficial gaping on the surface of the wound to complete breakdown requiring specialised dressings.
If a patient is well but has a wound requiring care, they may be discharged from hospital and referred to their local community nurses for management. If intravenous chemotherapy is planned after discharge home, all wounds must be healed before commencement. In some cases, this may take several weeks.
Patients are at high risk of developing blood clots following major surgery. The risk is greater in patients who have a cancer. To reduce this risk, patients are given injections to “thin the blood” e.g. heparin or Clexane®. They are asked to wear support stockings for their entire hospital stay and be encouraged to mobilise as early and frequently as possible postoperatively.
If patients develop limb swelling or chest pain or shortness of breath, they will be investigated for deep vein thrombosis (DVT) or pulmonary embolus (PE) / lung clot. Treatment involves giving intravenous heparin and later oral tablets e.g. warfarin or long-term blood thinning injections (Clexane®). On a few rare occasions, these blood-thinning drugs have had an adverse effect causing an unexpected bleed within the abdominal cavity requiring intervention. You will be closely monitored for any signs of bleeding whilst receiving these drugs.
Routinely, patients will be required to self-administer Clexane® for 6 weeks after discharge. You will be educated on injection technique towards the end of your hospital stay. If you develop the above symptoms before or after discharge from hospital, please advise us or your local doctor immediately.
On rare occasions, pressure on a nerve in your arm or leg during the operation can cause nerve damage. Any damage to the nerve would usually be temporary but can take a long time to recover and affect your walking or use of a limb and may delay your recovery. Should this occur the physiotherapist will assist you with your management in hospital and a referral be made for ongoing physiotherapy in an outpatient setting nearer to your home.
Damage to pelvic nerves or structures during the operation may lead to post-operative problems with sexual function. Please advise your GP if there are ongoing issues as help may be available. Men who undergo pelvic surgery as part of the peritonectomy may experience erectile dysfunction or ejaculation issues. Women may have their ovaries removed during the surgery resulting in early menopause or discomfort during intercourse. Hormone treatment may be recommended and commenced early in hospital if symptomatic. More information is available at www.ovariancancer.net.au.
Tiredness or general weakness is to be expected after an intensive treatment program. It can take several months – but it may take longer – to get your strength back up to normal. Occasionally patients may be referred for a rehabilitation exercise program if they are deconditioned after having spent several weeks in hospital.
Serious organ failure
The most serious risk is that a critical part of your body fails as a result of the treatment or its complications. Examples include kidney failure or lung failure, and these can lead to other problems including brain damage. Support can be given in intensive care to deal with these, such as dialysis for kidney failure or more prolonged time on the ventilator machine if the lungs are not working. However, if these problems become prolonged or insoluble, recovery may no longer be possible. This is what may have happened to those patients who have died as a complication of the procedure. Organ failure may be a side effect of the overall package of surgery and chemotherapy and sometimes specifically from the chemotherapy.
The risk of death from peritonectomy at St George Hospital is less than 2% based on our unit having performed over 1500 surgeries (as at June 2019).
Quality of life
There is no doubt that your quality of life will be poor in the weeks immediately after surgery. Research from our peritonectomy unit and other units shows that most people return to performing their activities of daily living, with some limitations, within 4 weeks of surgery. Quality of life returns to acceptable or normal within 3-6 months after surgery for most people. There may be specific impairments of quality of life related to bowel, bladder and sexual function. Sleep disturbance is also common.
Weighing up your options
The following questions may assist you in weighing up the pros and cons of pursuing a peritonectomy.
- Do I understand what is involved in undergoing peritonectomy (from workup, the surgery itself and beyond)? Is it all acceptable to me?
- Am I likely to need a second operation? If so, when? Is that acceptable to me?
- How is my illness expected to progress without a peritonectomy? What would this mean for my functioning in six months, 1/2/5 years if I keep going as I am now?
- What level of functioning do I expect after a peritonectomy? Am I being realistic?
- What am I afraid might happen if I seek peritonectomy? What am I basing this on? What am I afraid might happen if I don’t seek peritonectomy? What am I basing this on?
- How might my family cope if I have an operation? What are their views/concerns?
- Do they understand my views/concerns?
- What will my quality of life be, with or without Peritonectomy?