Just been diagnosed with a Carcinoid Tumor not sure what to do now? - Cancer Message Board

sarah1686 · 08-26-2008, 06:56 AM

Hi I am 22 years old and at the end of April i had my appendix taken out in an emergency and have now been told that a carcinoid tumor was found in my appendix and have since had further tests and been told it has spread to my liver, i now dont know what to do all that the doctors keep saying is confusing me and i dont know who to tell i have not told my family or my boyfriend I am keeping it all to myself and i feel like i am going to explode i dont know what to do, some comments would be great please help me. Thanks

cottonsocks · 08-26-2008, 07:42 AM

Quote:

Originally Posted by sarah1686

Hi I am 22 years old and at the end of April i had my appendix taken out in an emergency and have now been told that a carcinoid tumor was found in my appendix and have since had further tests and been told it has spread to my liver, i now dont know what to do all that the doctors keep saying is confusing me and i dont know who to tell i have not told my family or my boyfriend I am keeping it all to myself and i feel like i am going to explode i dont know what to do, some comments would be great please help me. Thanks

Hello Sarah, You really must ask your doctors to explain this to you my dear, and it would help you to tell your family. These kind of tumours are often found during appendix surgery, over 80% so the literature states, but it depends so much, on many factors as to how it will be treated.
Obviously one cannot comment on that because you haven't given those details, and even if you had, it would not be right to discuss it here. A professional medical consultant surgeon needs to explain those things to you so that you can understand, and this is where your family may be of great help to you. I hope that you will get the support of your family and boyfriend, and trust any treatment you may have will soon have you fit and well again.

RoseEm · 08-30-2008, 11:23 AM

I can't agree more. You must allow others to help you. During the first few months of my treatments (different cancer), I had either my brother or sister-in-law with me at all my appointments to ask questions that maybe I just couldn't think of! Here are some guidelines that might help. Also, if you will invest a little money in buying a hand-held tape recorder and tape every session you have with your doctors, you will find that it is invaluable as you get more and more instructions.

But please, please allow your friends and family to support you. I know that I owe my sanity and my life to my sister-in-law. Don't get me wrong, my brother's been great, but my SIL has suffered with me, encouraged me, pushed me (when I didn't want to be pushed), walked with me, cried with me and laughed with me.

1) Start and maintain a health record. List every surgery, major health issue you've ever had and update it with what occurs during your cancer treatment. This record is so helpful in expediting new doctor visits or hospital check ins. We simply handed them a copy and that took care of most of the paperwork.

2) Start and maintain a list of drugs you take - even if you only take it a few days because it may not work. Again, this is extremely helpful when seeing a new doctor or checking into the hospital.

3) Write down questions as they occur to you, if you feel they can wait until your next doctor's visit. We did find that relying on memory is NOT a good idea.

4) Never hesitate to call your doctor - I cannot stress how important this was for me. One thing I thought was probably relatively unimportant ended up with my being admitted to the hospital for the beginning of pneumonia!

5) Monitor your insurance payments and Explanation of Benefits against the bills you receive from doctors, hospitals, etc. We've found many discrepancies.

6) Try and maintain your sense of humor. It helps when the depression kicks in.

7) Cry when you need to - but don't allow too much crying!

8) Go day-by-day.

Good luck - you're in my thoughts.

Memmy99 · 08-31-2008, 11:31 AM

I to have Carcinoid Cancer. As with you, it was stage four and had spread to my liver.

This is a very rare and not well known cancer. Most doctors never even see it. First ond formost, let your family in. It is difficult but they can and will support you. Second, and I can't stress this one enough. FIND A SPECIALIST!!! There are some great resources out there like the caring for carcinoid foundation. They have an online database with doctors and cancer centers listed all over the country. I can't post the link but you can search their name.

I've been very fortunate so far. Mine was discovered last year through a routine physical by a doctor that leaves no stone unturned. I had surgery in September and so far I am doing great and not on any active treatments. I did not take pause and neither did my team of doctors. My PCP had me into a surgeon and he didn't even have to ask me if I wanted surgery. My oncologist is in constant communication with the Mayo clinic and also my other doctors which includes my surgeon, PCP and cardiologist.

I have a cardiologist because this little bastage can also damage your heart. So I cannot stress enough that you cannot sit by and do nothing. Do not accept answers that would stop you and by no means should you blindly trust your doctors, Most have little or no experience with this cancer.

Wife of ENB pt · 10-05-2008, 07:30 PM

Check out the website [url]www.carcinoid.org[/url]. It has quite a bit of information on carcinoid cancers and specialists in the field.