Frequently Asked Questions
I have just been diagnosed with appendix cancer, what should I do next?
- If you’ve been diagnosed with appendix cancer, it is unlikely the physician who discovered your cancer has seen many other cases of appendix cancer, it is a rare cancer. Before making any treatment decisions, it is a good idea to seek a second opinion from a physician who has seen many cases of appendix cancer and who has experience treating the disease.
- For a list of physicians I have been in contact with up to this point who treat appendix cancer, along with their contact information, see my “Physicians and Facilities” page.
- Bring to your appointment or send prior to your appointment: copies of your history and physical, tumor marker test results (CEA, CA19-9 and CA125), operative reports, progress notes and pathology reports. You will also need to bring or send your most recent CAT scans of chest, abdomen and pelvis – reports as well as the actual films, or digitalized films on compact disk. You should also bring PET scan films or digitalized films on compact disk and reports, (if PET scan has been done). When you come to see the physician they will also most likely request you bring the actual pathology slides, which you can obtain from your hospital.
- When you contact a specialist, they will tell you exactly what information to send to their office. Many times they can look over your information and make an appointment to see you after they have evaluated your medical information.
What questions should I ask the specialist?
Don’t be afraid to ask questions, and take a written list of questions with you. Some good questions might be:
- How many cases of appendix cancer (or peritoneal cancer) have you treated?
- What treatments do you use?
- What are your complications rates?
- How aggressive is my particular tumor?
- What treatments do you think I will need?
- How long do you expect my recovery from treatment to take?
All of the survival statistics for this cancer seem awful. What does this mean for me?
Please remember, this is a rare cancer. The survival statistics for a rare cancer can be misleading. Many times the numbers are compiled over a very long period of time as there are so few cases. This means survival statistics that are better for those who have had more current treatment might be combined with survival statistics for those who years ago received no treatment at all. Also always remember, if there is only a 20% survival from any particular cancer, which means 20% survive. There’s no reason to think you won’t be in that 20%. At one point I was given no odds for survival at all, and I have been cancer-free for over 15 years.
I have been diagnosed with something called Pseudomyxoma Peritonei, they also call it PMP. What is it?
PMP are the initials for a syndrome called Pseudomyxoma Peritonei. This syndrome is caused by tumors that spread into the abdomen and that produce large amounts of mucous. There are low-grade and high-grade tumors that can cause this condition, though more recently the term Pseudomyxoma Peritonei is starting to be used only for the syndrome when it is caused by the lower-grade, or the more benign type, of tumor. More information about these types of tumors can be found on my “Types of Appendix Cancer” page.
What is MOAS?
MOAS is an acronym for “Mother Of All Surgeries”, it was used by someone to refer to the cytoreduction surgery that is needed sometimes for patients whose appendix cancer has metastasized into the abdomen. The name stuck in some internet circles.
What is the "heated chemo" or "chemo wash" I've heard about?
This is a treatment for appendix cancer involving liquid chemotherapy being placed directly into the abdomen. The chemotherapy solution is often heated.
I've heard there are a lot of complications associated with the cytoreduction surgery and peritoneal chemotherapy. Is this true?
- The cytoreduction surgery and peritoneal chemotherapy may in many cases be the only treatment that can offer hope of long-term survival in cases of appendiceal cancer that have spread into the abdomen, but the treatment is associated with a high complication rate. The surgery has a 25% complication rate, but only 10% of these complications may require more aggressive therapy.
- I experienced NO complications, but I made sure to get out of bed the day after surgery and to walk the halls daily and to only go to bed to go to sleep. I was supposed to be hospitalized for at least 14 days, but was discharged in only 6 days.
Does everyone with appendix cancer need cytoreduction surgery and peritoneal chemotherapy?
Only a specialist can determine which patients are the best candidates for this treatment, but it is often indicated when the appendix cancer has spread beyond the appendix to the surfaces inside of the abdomen. This spread of cancer is called a peritoneal surface malignancy.
Will I need to have IV chemotherapy?
Only a specialist can determine if you will need IV chemotherapy, not everyone does. In some cases only peritoneal chemotherapy is used, in others IV chemotherapy is used in addition to peritoneal chemotherapy.
I see lots of information on the internet about natural and herbal cancer treatments, some claim to cure cancer. Should I try these?
Please be careful before paying money for or trying these therapies. Many claim, especially on the internet, to have found herbs or natural remedies that cure cancer. Be sure to investigate whether these treatments have been proven effective in research. A good way to look for information is to type the name of the herb or treatment into the internet followed by “ + NIH”. This will give you information from the National Institute of Health, a source you can trust.
Will I lose my hair?
It is possible you will lose your hair, though it is less likely with the chemotherapies used for appendix cancer than the chemotherapies used for some of the other cancers. I did not lose my hair.
Will I have to have a colostomy if I have the surgery?
In some cases patients may need a colostomy, though not in the majority of cases. In some cases colostomies are only temporary and are reversed several months after the initial surgery.
How will they know if the treatment is successful? How will they know if the cancer comes back?
After you have completed treatment, tests will be done at various intervals to determine if you are cancer free or are having a recurrence. These tests may include CT scans and tumor marker tests.
Please help! I get a lot of email from appendiceal cancer patients, so try to compile a list of frequently asked questions from that source. I would appreciate any input from those of you dealing with this disease–what are your most pressing questions? What questions would you most like to see answered on this page of my site that aren’t currently listed?? There are no stupid questions except the ones not asked. Your input would be greatly appreciated–only you know the questions you need answered.
Thank you in advance!