1. 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.
2. 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 survival rates?
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
If you want to know some other questions to ask your surgeon, the US Department of Health and Human Services offers a suggested list of questions in a brochure entitled:
Making Sure Your Surgery is Safe
3. 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 complied 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. In some cases, with correct treatment, 10 year survival for lower grade appendiceal tumors can currently be as high 70-80%. Also always remember, if there is only a 20% survival from any particular cancer, that 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 5 years.
4. 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 at: Mucinous Adenocarcinoma and Pseudomyxoma peritonei (PMP).
5. 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. I have information about this surgery on my page Cytoreduction Surgery.
6. What is the "heated chemo" or "chemo wash" I've heard about?
7. 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. More about the complications associated with this treatment can be found at Complications of Cytoreduction Surgery and HIPEC .
8. 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. More information about this can be found at Peritoneal Surface Malignancy and atPeritoneal Carcinomatosis . The seriousness of this type of cancer can also be determined using staging methods as outlined in Staging of Peritoneal Cancer .
9. 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 have information about the chemotherapies most commonly used for this disease when it is needed on my page Systemic (IV) Chemotherapy for Appendiceal Cancer
10. I see lots of information on the internet about natural and herbal cancer treatments, some claim to cure cancer. Should I try these?
11. 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. For more information about hair loss, see Hair Loss and Chemotherapy.
12. Will I have to have a colostomy if I have the surgery?
13. How will they know if the treatment is successful? how will they know if the cancer comes back?
Please help! I get a lot of email from appendiceal cancer patients, so will 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; how many of us have been in a classroom situation afraid to ask the "stupid" question and then been so relieved when someone else has raised their hand to ask it for us? I will do my best to answer, or to find the answer, to your question.
Your input would be greatly appreciated--only you know the questions you need answered.
Thank you in advance!
This website is for informational and educational purposes only. Readers are encouraged to confirm the information contained herein with other sources. The information on this website is not complete and not intended to replace medical advice offered by physicians or health care providers. Patients and consumers should review the information carefully with their professional health care provider.
Copyright © 2005- 2010 C. Langlie-Lesnik RN BSN All rights Reserved
Last Updated 02/12/2010 12:50:09 PM