Here's some help to make your journey easier!

Step 1 - Learn About Your Particular Cancer

You will need to learn as much as possible about your particular kind of cancer, be it carcinoid, islet cell, MEN1 or MEN2, bronchial carcinoid, gastric carcinoid, or any of the cancers that are catagorized as neuroendocrine in origin.

You and your caregivers will learn more about cancer and the human body than you ever imagined.  After all, who ever heard of "neuroendocrine" anything???  Your knowledge is only one part of your ability to "manage" this disease and live a fruitful life, but it is an important one.  You have to know if the care and treatment you are receiving is the best route for you and for treating your disease.  You have to be able to communicate effectively with your medical team to let them know what your body is telling you. 

Knowledge is definitely power when it comes to neuroendocrine cancer.   We hope you will find information here at our website that will help you in this quest.   Ask your doctors where you can learn more about your cancer, research the internet, contact support groups...do whatever you must to get the information.  Your life  depends on it...literally!

Step 2 - Choose a Team of Doctors Experienced in Neuroendocrine Cancers 

This is a tricky part of the equation.  Few doctors will admit that they do not know how to treat your disease. To see the doctors our members have used and recommend, click here.

Be cautious of those who tell you about the three other carcinoid patients they have seen in their practice and how well they are doing with no treatment!  Be cautious of those who refer to neuroendocrine cancer as "Benign".  Be cautious of those advise you to "Wait and See" if you get symptoms.  All these approaches can shorten your life! 

You will need an EXPERT in neuroendocrine cancer to lead your team of doctors.  There are treatments that preclude other possible treatments if done in the wrong order.  There are treatments that can be harmful...for example, surgery or even extensive dental care without an octreotide drip to prevent "carcinoid crisis" can be life threatening for a neuroendocrine cancer patient. 

Carcinoid syndrome and carcinoid crisis are two different things.  If your doctor uses those terms interchangeably, RUN the other way!  There are a number of these simple problems that may be unfamiliar to most doctors.  It is up to you and your caregiver to make sure that you are not a victim of a doctor's lack of knowledge about your cancer.

What you will find quickly is that the experienced doctors are few and far between!  You will probably have to travel to get effective care and evaluation.  Thankfully the nationally recognized experts in this field are willing to cooperate and communicate with your local doctors.  They make themselves available to patients and caregivers by participating in online forums, appearing and speaking at conferences and meetings, by publishing their research findings and by giving their patients and other doctors easy access to them...cell phones, email addresses, etc. 

There are some local doctors who are willing to cooperate with the "expert from afar" in the management of your case, but you will have to get their commitment to that.  If your current doctor is not willing to cooperate with one of the country's best specialists, fire that doctor and get another one.  Sounds harsh, but not nearly as harsh as your having a serious problem and no one to turn to for help.

Step 3 - Connect with Others Who Have Your Kind of Cancer

You don't have to reinvent the wheel when it comes to dealing with neuroendocrine cancer.  There are others "walking in your mocassins" right now...all across the country.  They know what you are dealing with, they care and they will lend a helping hand.  All you have to do is reach out.  

• Join a support group.  You'll find kindred souls and lots of information and support for you and your family.
  
• Join an online listserv... It is here that folks join in an ongoing discussion about neuroendocrine cancer.  Remember, the cancer you have is RARE and you are a unique being.  General cancer knowledge is not enough...you will need information specific to neuroendocrine cancer.  
• Ask your doctor to recommend other patients you can contact.  They may need to get the other patient's permission to get you connected, but be patient and keep asking.  You may even want to give your doctor a card with your contact information on it to give to other patients so they can contact you.

Step 4 - Give Yourself Permission to Ask for Help and to Take Time to Heal

Everyone dealing with cancer has good days and bad days.  Communication with those around you is important.  Whether you are recovering from surgery, dealing with treatments or testing protocols, or just trying to get through your day, be open about your level of coping.  Let those around you and your doctors know if you are feeling down, ill or weak.  After all, they aren't mindreaders.  Get in touch with your body and how you feel and learn to describe any symptoms in specific terms that your doctors and caregivers can understand. 

Ask your family and friends to join in your journey as caregivers... those who have your best interests at heart. 

• Appoint one or two persons as your "spokespeople"...give them authority, legally and otherwise, to speak for you if you cannot speak for yourself.  
• Identify support people your caregivers can call if they have concerns or questions.  It can be your doctors, support group members, etc.
• Don't be afraid to ask for help!  This can be the hardest tip to follow.  None of us likes to feel we are losing control of our lives and abilities.  However, sometimes we face situations that we just cannot handle alone.  It may be as simple as sitting up after a surgery or opening a jar when you are feeling weak.  Give those around you the opportunity to help...they feel good about it and you avoid doing something that could hurt you or keep you from enjoying that moment to its fullest.
• Don't be afraid to say NO or NOT NOW!  If you are tired or not feeling well enough to participate in a particular activity, it is ok to say "I'd rather not!"  Taking care of yourself, listening to what your body is telling you and giving yourself permission to heal and rest when necessary are good things to do.  Those close to you will understand... eventually!

Step 5 - Start a Medical Records Notebook or File Set

"But my doctors have all my records on file",  you may respond.  Yes they do and that won't help you if you are having a problem on the weekend, a holiday or when you are out of town.  You need a copy of all your records including clinic visits, medication lists, all test results, a CD/DVD of all scans & reports, x-ray films & reports, operative reports on all surgeries, hospital records, doctor visits, treatment reports,etc.  Be forewarned - there will be a lot of paper to gather and keep track of,  so get your most organized caregiver to give you a hand. (Most places will give you a copy of their report if you request it at the time of service.  You can also request a copy from your doctor.  If you need to request records from a hospital or university medical center, get the records as soon as possible after the service.  Usually the first copy you request is free, but not always.  Whatever the cost, it is worth it.) 

When you get all your records together, get them on your computer.  Scan all that paper and copy the CDs and DVDs!  Then, finally load it all on a portable "thumb drive" or USB drive.  Carry it with you at all times.  It may be the only connection to your history that a doctor has in an emergency.  Wear a medical ID or bracelet and carry a card in your wallet showing that you are a Neuroendocrine Cancer (or your specific diagnosis) patient  and include the information about using an octreotide drip (and avoiding epinephrine and pressors) in case of an emergency, surgery or trauma!  That one tip could save your life!

          Feeling alone?...lost?...         don't know which way to turn?  We can help!!!

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Step 6 - Start to Find Ways to Simplify and De-Stress Your Life.

It is amazing how many of us think we are immortal and irreplaceable!  Funny, isn't it, since we all will take our leave of this life at one time or another.  Your diagnosis of cancer was not a death notice.  That notice came the moment you drew your first breath of life.  It goes with the territory, you know?!?  So what you really heard with that diagnosis, is that you have a serious, perhaps eventually life-threatening disease that you will be dealing with for the rest of your life.   Similar to other chronic diseases...e.g. diabetes, heart disease, etc...for which the goal is to extend your life as much as possible and deal with any symptoms that arise.  There will be times when you can mostly forget about it and other times when the cancer will be the overwhelming center of your existence. 

For now, you have the opportunity to do one of those "life event changes"...trimming from your life the things that cause you anxiety, that do not give you pleasure or are an irritant!  Keep in mind that you still have a life to live, so you can't give up doing the bills or keeping your home habitable, but there may be alternatives to your personal stressors that can be implemented now. 

There are several activities that can cause a flare up of carcinoid symptoms (carcinoid syndrome) and in the worst case, carcinoid crisis, and are known as the five E's of carcinoid:

1. Eating (some foods & drinks)
   
2. Exercise
3. Emotions, Stress, Trauma
4. Epinephrine
   
5. Ethanol (alcohol) 

Check your lifestyle and make note of any of the above activities that cause you problems... If running causes you to flush and have episodes of diarrhea and cramping, you might substitute swimming as an exercise.  If you are working long hours, have a long commute, etc., perhaps a chat with the personnel manager is warranted to request temporary or permanent accomodations. 

Symptoms of "carcinoid syndrome" include flushing, diarrhea, shortness of breath, wheezing, abdominal cramping, etc.  Now would be a good time to try to reduce the "stressors" that you know cause any symptoms to flare up! 

Any of the five E's in addition to stress, trauma, surgery or injury can also lead to "carcinoid crisis"... a life-threatening event involving irregular heartbeat, rapidly decreasing or increasing blood pressure, and bronchial spasms or difficulty breathing.  It can look like a serious allergic reaction or anaphylaxis!  If this happens to you, get to the ER...it can be a life-threatening situation.  Tell them no epinephrine or pressors except as a last resort. (Epinephrine or pressors are BAD for folks with neuroendocrine cancer experiencing a carcinoid crisis and can make your symptoms worse!)  Try octreotide instead!  Ask your carcinoid expert about this and investigate a medical alert bracelet or necklace.

Neuroendocrine cells secrete hormones that our bodies need to survive but in neuro-endocrine cancers those same beneficial hormones are secreted in higher amounts not conducive to a comfortable existence.  Any NET survivor can attest that these same life giving hormones can play havoc with your body when they are out of whack.   Eliminating as many of your "stressors" as possible will be beneficial.

Step 7 - Become Your Own Best Advocate

This is a process you should begin right away.  It is a process that requires you to develop skills in self-advocacy, speaking up for yourself, developing ways of communication that ensure you receive the information and care you need to live a full and satisfying life while dealing with this disease that has entered your life.  It involves asking lots of questions of and providing information to health care professionals, insurance companies, and others who most of us were taught were "infallible".  

Persons in "power" positions never like to have their opinions or positions challenged.  You will need good conflict management skills.  You will undoubtedly come across people who do not appreciate your questions or your suggestions about your care.  You do need to remember that this disease and your survival depend on an informed, open-minded  team that can effectively communicate.  

Your life is important...to you, to your loved ones and to your community.   In order to find your way through the health care jungle you must develop the skills to become your own best advocate.  Others may be available to help you, but you must first and foremost stand up for yourself and the care you deserve. 

[See the Cancer Survivor Toolbox listed under suggested reading on this page.  It can help you develop the skills you will need.]

Step 8 - Recognize You are Unique

Neuroendocrine cancer is not a "one-size fits all" disease. NET cancers present with an endless variety of twists and turns.  Your tumors may be slow-growing and change to fast-growing.  You may have no symptoms, despite discernible metastatic disease.   You may have blazing symptoms with no discernible tumors.  You may have a readily recognized primary tumor or you may have an "unknown primary".  You may have "no visible evidence of disease" for a time.  Your tumors may "light up" like a Christmas tree on various scans, or they may hide, like Harry Potter in his invisibility cloak, to quote one of our members!  In other words, it is no surprise that this type of cancer, whose symptoms mimic so many other diseases, are hard to diagnose and even harder to treat as each of us may react so differently. 

Add to the above all the other health issues you may be dealing with and you begin to see why it is so important to have a good team of doctors... and they will be many...to monitor and recommend treatments that will be most effective for you...

the UNIQUE YOU!