There is so much to learn when it comes to dealing with a diagnosis such as cancer.  The process can be overwhelming at times.  What does the Diagnosis mean?  What should I expect?  Should I get a 2nd opinion?  I don’t understand all the terminology.  Where do I start?  I am starting to get overwhelmed just writing this Blog post.  It brings back so many memories and emotions.

I was very lucky, a friend of mine is a Doctor and made himself available to me whenever I had questions and needed advise.  I don’t think he knows how much that has meant to me.  I tried not to abuse his generosity and reserve my questions to some of the bigger issues.

The following information is based upon my personal experiences and opinion.  I am sure there will be some that will disagree and have a different approach.  Go with your gut and do what works for you.

Remember this, ultimately you are the boss, you are in control of your own Journey.  You are responsible for the hiring and/or firing of your Healthcare team.  You are responsible for the decisions of your Healthcare.

TIP #1:    Understand Your Physicians Schedule:  (Very Important so you get your questions answered)  

 Understanding how your Physicians office schedules appointments is very important so you don’t set yourself up for failure.  What I mean is, respect that they probably have exam rooms with patients waiting as well as in the waiting room.  Yes, your time is important to, but so is everyone else’s.   Example; my Oncologist in Wichita, KS schedules appointments on 15 minute intervals.  By the time the Doctor completes the exam, discusses whatever is relevant to the appointment, makes notes for
the file, the 15 minutes (and some) is pretty much shot.  Therefore, if you are armed with a lot of questions, they are liable to be very short with answers (poor bedside manner) because they need more time allocated.  No problem, just be sure to schedule your appointments with the scheduler in a manner to accommodate the additional time needed.  I have done this on several occasions now with different physicians and it has made a huge difference.  The Patient/Dr. relationship is so much less stressful and more informative, it is a Win-Win.  However, if they are unwilling to accommodate this request or if the Doctor is reluctant to participate in the Q&A then I would be looking for a new Doctor.  Yes, I have had to do this!

Here are a few scheduling and communication suggestions.

• Schedule 1hr for your first initial consult.  You will have a lot of questions that you are going to want answered.  Your Physician should have many things to discuss about your new “Diagnosis” as well.
• Try not to bombard your Physician with pages of questions on every office visit if at all possible.  Rather, try to break them up and prioritize them.  There are some questions (I refer to as smalls) that you could call and get answered through the Physicians Nurse or PA.  If it is not a basic question they will get the answer for you from the Physician and relay it to you.
• When you have a lot of questions, be sure to schedule accordingly.  If you express this with the Nurse or Scheduler, they will make a note in the file and the Doctor should be aware of the additional time requested and why.
• BE DIRECT AND TO THE POINT.  When you have questions ASK.  Be direct, be specific, try to leave out stories.  Stories are a waste of valuable time for you and your physician and they do not serve any medical value.  Your Physician will appreciate you for this.
• Organize your thoughts before your appointment.  Bring supporting documentation if you have it.  When I am researching Trials or other clinical papers, I print them out and keep a copy with me.  I have found it very helpful to have the information on hand.  My Physicians like it as well.

TIP #2:   Should I get a 2nd opinion?  Is it Ok to request a 2nd opinion?  

You should get a 2nd opinion if you are not 100% confident and or comfortable with your Doctor.  I am a big proponent of 2nd opinions.  Especially when it comes to something so serious as “Cancer”.  Do not feel bad for requesting a 2nd opinion.  This is your life that is at stake here!  You cannot afford to wear your feelings on your shirt sleeve.  My local Oncologist did not hesitate to set me up with another medical center when asked for a 2nd opinion.  Not only did he not hesitate, he actually was highly supportive of the decision.  He felt like there are some specialty cancer centers out there that are better equipped and staffed to handle mCRC.

TIP #3   How to select a Doctor and Cancer Center.

As mentioned previously, you need to be 100% confident and comfortable with your selection.  Due your homework.

Selecting a Physician is no different than purchasing other services.  Ask around.  Ask other professionals, (Primary Care Physician).  Search online, you might be surprised what you find.  If it doesn’t feel right, keep looking.  You must be confident and comfortable with your Healthcare Team.

I strongly recommend a doctor that specializes in CRC cases if at all possible.  You can get this type of care from your larger cancer centers.  Why is this so important?   If your Oncologist deals with all kinds of cancer, there is no way He/She can be up to date with all the current information out there.  Even for Doctors that are very specialized, it is very difficult to keep up with all the information that is out there.  There are so many Trials, discoveries and new information available on a daily basis it is not possible to keep up with.  It is for this reason i spend so much time researching and learning.  I have no problem discussing my discoveries with my Oncologist (at Siteman Cancer Center), trials I am studying and following for future treatment possibilities.  My Oncologist actually supports the idea of the patient researching and becoming knowledgeable.  Your Doctor should not be insulted by this either.

Another element of cancer center selection is a Cancer Center that is active in Trials (Most are).  A lot of cancer centers have information on their websites in regards to trials.  If you are a Stage IV patient mCRC then trials will become important to you most likely at some point in your journey.

Out of State treatment options?  There are many things to consider if this is a consideration.  Logistically will all the Doctors appointments and treatments be feasible?  What about for family and friends (your support network)?  I chose to receive treatment at a cancer center that is a 15hr round trip by vehicle.  I am very glad I chose this option.  However, I will admit it is a challenging option.  I could not have done it alone.  I was to sick and in to much pain a great portion of the time.  This is a big commitment and not one to be taken lightly.  Especially if surgical procedures and recovery time will be involved.  Not to mention the expenses associated with this.

TIP #4:  Insurance Coverage (know what is and what is not covered):

You can contact your insurance provider and have a case manager assigned.  This person will be your go to person for all your coverage questions and concerns.  Is your 2nd opinion doctor covered?  Is that cancer center covered?  In network or out of network?  Just because a Doctor is approved doesn’t always mean the facility will be approved and visa versa.  If the Doctor and facility is out of state is it all covered?  Do they have any coverage for travel?  Lodging as well as travel expenses to and from?  Yes, believe it or not, some  policies do have special provisions for this.

TIP #5  Social Security Disability Benefits:

Are you unable to work due to your cancer or treatments you are receiving?  Have you exhausted all your sick leave, vacation time, FMLA, etc.?  You can look into SSD.  The application can be filled out online.  No, it does not require an attorney.  Be prepared to have a lot of information available.  Physicians names, addresses, phone numbers, dates of appointments, etc.  The more prepared you are the easier filing the paperwork will be.  I have not went through the process myself.  However, I have met many people that have.  I have also been told that if you are Stage IV, you will be automatically accepted once verified.  I have also been told there is a mandatory waiting period but once complete the SSD will be retroactive from the application date.  I have not had time to verify this information.  However, I thought it was important to bring up as this is such an important issue for some people.

TIP #6:  I Have Saved Possibly Some of The Most Important Information For Last.

I just wish I knew from the beginning what I know today.  I truly believe the experience would have been so much different.  You dont have to struggle so much.  There are professionals to help you along the way.  Ask your Doctor!

Palliative care team:  Do not confuse this with Hospice care.  They are very different.

Palliative care^[1] is a multidisciplinary approach to specialized medical care for people with life-limiting illnesses. It focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the terminal diagnosis. The goal of such therapy is to improve quality of life for both the person and their family.^[2][3] Evidence as of 2016 supports improvement in quality of life.^{[4] (Source: Wikipedia)}

Why palliative care?  Symptom and pain management to start with as well as side effects from treatment.  Nausea, Vomiting, Neuropathy, Head aches, etc.  They are professionals at providing relief from these conditions.

Psychologist/Therapist:  From the very beginning I was bound and determined that I did not need any help and “I Got This”.  Well, 2 years later I can say I was wrong.  I wish I had done this from the very beginning, I believe that I would be in a much better place mentally.  In addition, your family/caregivers can benefit as well from this service.  Do not take this lightly, attitude and lower stress levels are very important to fighting this battle.  Ask your Palliative Care Team.

Nutritionist:  Nutrition has never been as important as it is now.  Especially if the Nutrition specialist is versed with the needs of cancer patients.  This can have a big impact on your recovery from treatment as well as energy levels during treatment.  Ask your Palliative care team.

“Remember, This Is A Marathon Not a Sprint”