Tests and Procedures
for diagnosing and monitoring pseudomyxoma peritonei and appendix cancers
If you’ve been diagnosed with pseudomyxoma peritonei (PMP), you’ve usually had an extensive period of tests and often surgery. The tests may be used to monitor the progress of the disease, as well as to establish the diagnosis. PMP can be difficult to diagnose and it is often found during an operation for something else. Not every patient has every test and you should discuss with your doctor which test you should have and how often you should have them.
The tests and procedures can include:
Mum had an ultrasound initially and due to the need to drink plenty of fluid prior to and the cold jelly substance used during an ultrasound, the process causes mild discomfort and a slight sense of panic about the need to go the toilet but it does not take long and toilet facilities are close to the ultrasound room for the purpose of getting some relief after the examination!
An ultrasound scan, sometimes called a sonogram, uses high-frequency sound waves to create an image of part of the inside of the body. As PMP is characterised by the production of mucin, this often presents as discomfort in other places, for example as abdominal pain, swelling, suspected ovarian or bladder issues. So an ultrasound may be the first test to reveal an initial problem, though often not the root cause. Ultrasound is completely harmless, but it has limited use in the diagnosis and monitoring of PMP particularly as each patient presents so differently. Ultrasound has a poor detection rate in the diagnosis of PMP and it might often be found accidentally when looking for something else.
Before the scan, you will be asked to drink water to make sure that your bladder is full. The sonographer or radiologist will use an ultrasound probe on your belly. It doesn’t hurt but you will have a gel on your skin to make sure there is good contact for the probe. This probe emits the sound waves but you won’t be able to hear them. They bounce off different organs and the echoes are detected by the probe which turns this into an image. This image is displayed on a monitor while the scan is carried out.
Most scans are on the outside however female patients may have a transvaginal ultrasound (meaning through the vagina). This is to allow the ovaries to be looked at more closely. This can be a little uncomfortable as a small ultrasound probe is passed into the vagina.
An ultrasound should not hurt and it’s not noisy but the gel can be a bit cold! It should not be a scary experience in terms of a procedure.
My colonoscopy was very uneventful for me as I had a cannula placed and had sedation into this and woke up after it was all done. If you are at any time in the procedure not comfortable or have any concerns you must say. A nurse is generally by your side to make sure you are ok.
After the colonoscopy, there may be some cramping and most defiantly some rather impressive wind! During the scoping, they slightly inflate the bowel with air to get a good look. This escapes with gusto after!!
Once the staff are happy that you are nice and awake and you are ok, then it’s home time. You will need someone to collect you due to sedation. All the going home advice will be explained before and after.
It’s not as bad as you think!
A colonoscopy is a procedure where a colonoscope (a camera and light on the end of a flexible probe) is inserted into the anus and up the colon (lower bowel) to examine the colon for signs of disease. This procedure is said to be painless, but it can cause discomfort for some during the procedure, particularly if the disease is advanced. Colonoscopies are generally clear for PMP patients as the disease is usually on the outside of the bowel, in the peritoneal cavity.
The colonoscopy was not as bad as mum had imagined — she opted to have a mild sedative. The preparation is unpleasant as the bowel does need to empty prior to a colonoscopy but this is only a temporary situation and is necessary. The results are immediate due to the nature of the examination.
A biopsy is the removal of a small amount of tissue for examination microscopically by a specialist called a pathologist. It is this examination which will ultimately lead to a diagnosis of Pseudomyxoma Peritonei. Because of the nature of PMP, this biopsy will likely take place during initial surgery, for example, to remove an ovary or appendix.
Having a biopsy with use of the endoscope is interesting. You feel a pull, but not much else.
I have blood tests every few months, sometimes more. It can be uncomfortable if the nurse or phlebotomist is less experienced. Drink lots of water the night before and doing some type of exercise to strengthen the cardiovascular system does help. I have come away with 1 poke and sometimes 9 pokes. It just depends.
Blood tests usually involve taking some blood from your arm and can identify the levels of a number of proteins known as ‘tumour markers’. Tumour markers are produced by the body in response to trauma within the body cavity. However, these tumour markers can be misleading. For example, the levels can be elevated for quite unrelated reasons such as pregnancy or infection. It can be useful to look at the trend of the markers, over time.
The tumour markers typically monitored for PMP are:
CEA - carcinoembryonic antigen
Associated with the spread of tumour in the body cavity CEA (car-sin-o-em-bre-ON-ic an-tuh-jin) is a protein that is normally not detected in the blood of a healthy person. When certain types of cancer are present, CEA may be produced by the cancer cells. CEA may then be detected in blood, but it will not indicate which kind of cancer is present.
CEA is often used to monitor patients with cancers of the gastrointestinal (GI) tract such as bowel (colorectal) cancer. It may be raised in other cancers, such as ovarian and breast cancers, but can also be raised in benign conditions such as liver disease and inflammatory bowel disease (Crohns disease or ulcerative colitis).
It can also be high in heavy smokers and for other reasons.
Related to mucin production and generally associated with ovarian cancer and gastrointestinal cancers, CA-125 is a protein often found on the surface of ovarian cancer cells and in some normal tissues.
It is used as a marker for ovarian cancer as well as for PMP. However, CA -25 levels may also be high in other types of non-cancerous conditions, including menstruation, pregnancy and pelvic inflammatory disease.
Cancer antigen 19-9 (CA 19-9) is a protein that exists on the surface of certain cells. CA 19-9 does not cause cancer; rather, it is a protein that is produced by the tumour cells, making it useful as a tumour marker to follow the course of the cancer.
CA 19-9 is elevated in most patients with pseudomyxoma peritonei and advanced pancreatic cancer, but may also be elevated in other cancers and diseases such as bowel cancer, lung cancer and gall bladder cancer, as well as in benign diseases such as gall stones, pancreatitis, cystic fibrosis, and liver disease. Because elevated levels of CA 19-9 are seen in many diseases, elevated levels do not necessary mean the presence of pancreatic cancer. Very small amounts of CA19-9 may also be found in healthy patients.
An elevated level of any or all of these markers, whilst of concern, is not a definitive indication of cancer or of a return of the disease. You should always discuss results with your doctor and agree an action plan.
I have my tumour markers checked every 6 months. The blood is taken either by the phlebotomist or the nurse at the doctors’ surgery. The person taking the blood always checks to see which arm it would be easier to take it from. There’s a little discomfort at the beginning as the needle goes in (I don’t look) and after that it’s fine. Sometimes, I have 5 phials of blood taken, a good excuse for a cup of tea and biscuits when I get home. I’ve got used to the blood tests now but waiting for the results can be very stressful.
CT scans are produced by taking multiple X-rays. The X-ray ‘head’ revolves around the body, and then the results are digitally merged in a computer to create a series of ‘slices’ through the body, as if you had been cut up like a salami. This allows doctors to review pockets of mucin that are building up within the body and track the progress of the disease.
It should be noted that CT scans, like all X-rays, carry a modest radiation dosage, and therefore there use should not more be more than required. Generally, following treatment, an annual CT scan is advised to track and monitor progress.
Once you have your appointment for CT, make sure you are clear whether you will do a preparation the night before and/or whether you will have an intravenous contrast. My preparation consists of a drink that I have the night before, at least 8 hours before my scan. The CT scan will require that you have “nothing by mouth” for up to 8 hours prior to the scan – you need to check the information that you are sent from the hospital before the scan.
I have to make sure that I arrive at least 15 minutes before the actual appointment. This gives me time to fill out a form that will ask questions like what medications I take, have I ever had a scan before with the contrast fluid, medical history, etc.
Just prior to the scan, I drink a contrast fluid, approximately 2 glasses. It tastes somewhat like metal mint.
I’m asked to disrobe and remove any piercings, metal in the area that will be scanned. Underwear without any metal will be allowed to be worn in, bras without a metal underwire will also be allowed. Some hospitals have a blanket policy to remove everything no matter what material.
Once I’m in the room for the scan, I lie on the table. If I’m to have an IV, it will be done at this time. As with any place, some people are really good at IV’s and some are not. It stings a bit, but overall it is not uncomfortable.
The scan itself can be a bit loud and the table will move into the scan area. I’m then asked to hold my breath at times. The first couple of scans are without the IV fluid running. Once ready, they will let the IV fluid run, you will feel warm in your lower abdomen and genital areas, like you have urinated. Not to worry, this is completely normal. They will do a few more pictures.
That’s it, it’s done, the nurse takes out the IV and I get dressed.
If it is requested by my doctor, I may wait for a CD. If not, I leave and the disc and findings are sent to my treating doctor.
An MRI scan performs a similar function to a CT scan. It doesn’t use X-rays, but a strong magnetic field which can image different types of tissue. An MRI scan doesn’t expose patients to ionising radiation, unlike a CT scan, but does mean that a patient is required to stay still for a much longer time.
The role of MRI in PMP and other peritoneal malignancies has significantly increased over the last decade, because of improvements in access, technology and protocols. Modern contrast agents allow a greater sensitivity than CT scans, assuming patients are still enough!
The MRI uses magnetism to build up a detailed picture of your pelvis, abdomen and chest areas. As the scanner contains a powerful magnet, you will be asked to complete and sign a checklist to make sure it’s safe for you. The checklist asks about heart or brain surgery to understand if you might have any metal implants such as a pacemaker, metal pins or a contraceptive coil. You should also tell the person doing the scan if you’ve ever worked with metal or in the metal industry in case any tiny fragments of metal have lodged in your body. If you do have any metal in your body, it’s likely that you won’t be able to have an MRI scan. In this situation another type of scan can be used.
On the day of your scan, you should be able to eat, drink and take any medication as usual, unless you have been told otherwise beforehand. In some cases, you may be asked not to eat or drink anything for up to four hours before the scan, and sometimes you may be asked to drink a fairly large amount of water when you get there. This depends on the area being scanned.
Before the scan, you’ll be asked to remove any metal including jewellery, piercing and wigs (as some contain some metal). You will be given an injection of a contrast dye into a vein in the arm, which doesn’t usually cause discomfort. The contrast medium can help the images from the scan to show up more clearly.
During the test you’ll need to lie very still on a couch inside a long cylinder (tube). It’s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It’s also noisy (as Lynn says), but you’ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner.
The MRI (magnetic resonance imaging) scan was the first scan I had before a CT scan, which I believe is the more expensive option. The procedure is similar, although the machine is bigger and crucially louder. To work properly the magnets need to be electrified and when they are they go “bang bang bang!” This is normal and you get used to it after the first round, but do expect it!
Usually, the nurses will give you headphones and you can take a cd in to play to relax you and cover the noise. Nothing touches you, you lie down on a bed and then the machine does everything. Follow the instructions given and lie as still as you can. The bed then slides in and out, and unless they are scanning your face your head stays outside the machine. The nurses don’t stay in the room, they usually have a separate room and speak to you via the headphones. The most important thing about an MRI is that because it is magnetic you must take all metal objects off. Gold and silver are okay, but watch out for bra hooks, metal buttons etc. Not just because it could harm you, but more because it could obscure something important on your image.
For further information, you may find these links useful.
Radiography exposed: The machines that see inside us
Radiation exposure from medical scans a
Experience CT scan in 360 virtual reality
How to Read Your Radiology Report
Carcinoembryonic antigen (CEA)
Carcinoembryonic antigen (CEA). Lab Tests Online UK. November 2, 2020. Accessed August 25, 2020. https://labtestsonline.org.uk/tests/carcinoembryonic-antigen-cea.
Cancer antigen 125 (CA125)
Cancer antigen 125 (CA125) test. CA 125. July 13, 2018. Accessed August 25, 2020. https://labtestsonline.org.uk/tests/ca-125-test.
Cancer antigen 19-9 (CA 19-9)
Cancer antigen 19-9 (CA 19-9) test. CA 19-9. April 28, 2016. Accessed August 25, 2020. https://labtestsonline.org.uk/tests/ca-19-9-test.
CT, MRI and PET imaging in peritoneal malignancy
Patel CM, Sahdev A, Reznek RH. CT, MRI and PET imaging in peritoneal malignancy. Cancer Imaging. 2011;11(1):123-139. doi:10.1102/1470-7330.2011.0016
Elevated tumour markers prior to complete tumour removal...
Alexander-Sefre F, Chandrakumaran K, Banerjee S, Sexton R, Thomas JM, Moran B. Elevated tumour markers prior to complete tumour removal in patients with Pseudomyxoma peritonei predict early recurrence. Colorectal Disease. 2005;7(4):382-386. doi:10.1111/j.1463-1318.2005.00773.x
Tumor markers. National Cancer Institute. Accessed February 25, 2018. https://www.cancer.gov/about-cancer/diagnosis-staging/diagnosis/tumor-markers-fact-sheet.
Prognostic value of circulating tumor markers in patients with Pseudomyxoma peritonei...
Baratti D, Kusamura S, Martinetti A, et al. Prognostic value of circulating tumor markers in patients with Pseudomyxoma peritonei treated with cytoreductive surgery and hyperthermic intraperitoneal chemotherapy. Annals of Surgical Oncology. 2007;14(8):2300-2308. doi:10.1245/s10434-007-9393-9
Incidental ultrasound diagnosis of pseudomyxoma peritonei...
Khan S, Patel AG, Jurkovic D. Incidental ultrasound diagnosis of Pseudomyxoma peritonei in an asymptomatic woman. Ultrasound in Obstetrics and Gynecology. 2002;19(4):410-412. doi:10.1046/j.1469-0705.2002.00611.x
Author: A Brook
Reviewed by: S Butler DCR, BSc (Hons), Advanced Practice Reporting Radiographer
Reviewed: August 2020
In memory of Sam