Having yourself or a loved one diagnosed with cancer is a terrifying ordeal. Confusion, fear, and uncertainty make all physical movement seem clumsy and jerky, as if your brain is in shock, making communication with your nervous system impossible. Sudden flash-backs to happy moments in your life collide violently in your mind with flash-forwards of the possible dark, lonely days and nights ahead.
Within the first few days of learning about the cancer, I think it is important for the caregiver and patient to start building a plan to fight it. Stop looking up “cancer” and “life expectancy” on google! This will throw a wrench in your ability to cope and accept this nightmare. Wait for your doctor to learn more about your tumor and discuss it with you! Then do your research.
Once the shock wears off you can start preparing for the battle. Here’s a list of steps we took from diagnosis to the first session of treatment. With this you will get an idea of the agonizing steps you must take before treatment begins. Do not think it will be a quick process; it is slow and agonizing!
We understand the fear you feel and want to make this as simple and stress free as possible for you. Please understand that this is not a MUST DO list. I did a lot that first week because I felt a need to get this done to speed up Kathy’s first treatment session. Not all of you have time to do what I did. Adjust it to your schedule and use what you want, discard the rest.
At the end of this publication we have included links to the US News top 20 cancer centers of 2016, various organizations we contacted, and organizations that might be able to help you with travel, flights, and housing on your trips to receive treatment. Also included are notes I jotted down during communication with these organizations.
We hope this helps! Please feel free to contact me with any questions you might have. Click here to send me an email with your question.
- Have the doctor that diagnosed your tumor set up an appointment ASAP for a biopsy.
- Begin building your support system: Tell your family and close friends. You WILL need this! I can not stress enough how important the prayers and words of encouragement from around the world have been for us.
- Tell you employer: Hopefully your employer will be as awesome as mine and Kathy’s. Not only did they treat us as humans, but in both our cases they said they had our backs and to not worry about our jobs.
- Contact Cancer Centers: Do your research and find a nearby cancer center that you feel will be a good fit for you. The places I contacted said they couldn’t make an appointment until after a biopsy had been done and a pathology report created. Be sure to go ahead and give the person you are talking to all the patient’s insurance information so they can get started on creating a file for you or your loved one. Also, ask them what additional information they need you to fax them in order to get the ball rolling ASAP.
- If you do not have unlimited funds contact your bank and explain your situation. I was able to secure a low interest line of credit that only charges interest on the funds I use. It is very similar to a credit card, but without the 18% – 25% interest rate many charge.
- Begin prepping for a fundraiser encase it is needed: You should have this prepared encase you need it down the road. I may have a low interest line of credit but I do not want it to build too high a balance and cause BIG problems down the road. You can also look into having shirts printed up as part of your fund raiser. You will be surprised by the number of family, friends, and strangers that want to help you out.
- Invest in a good day planner that has calenders and additional space for notes. You will be writing down a lot of dates, observations, and instructions. It will not be a waste of money.
- Be prepared to find out just how powerful your love is. Spend all the time you can with family.
- Plan your rolls in this battle: In Kathy and my case, we decide that Kathy’s only job will be to fight this cancer with every core of her being. My responsibility, as husband and caregiver, will be to deal with insurance companies, finances, doctor appointments, and procedure appointments.
- Create your own private support group. We decided to start Team Fist Bump, which is our own private group open to anyone willing to say a prayer, give a hug, fist bump, or send an inspirational message Kathy’s way. We have hundreds of members today that we keep in touch with through social media. Kathy and I receive a ton of strength just by reading comments left on our Facebook post we put out allowing the “team” to follow Kathy’s progress and experiences.
- Have the Cancer Centers you have in mind contact the hospital where the biopsy was, or will be done, and your primary doctor to request all medical records so they can add this to the medical file they are building on you. Remember to double check with them that this has been done.
- Hopefully you will be able to have the biopsy done during the first week. In our case the biopsy did not occur until the second week. At which time I told the hospital where the biopsy procedure was taking place that our cancer center of choice (Memorial Sloan Kettering Cancer Center), requested that I drive the pathology slides to them once they have been made available. I was told when and where to pick them up without any problems. I also request that the pathology report be faxed to Kathy’s primary doctor and Memorial Sloan Kettering Cancer Center. Be prepared to wait a long, nerve-wracking 3-4 business days for the pathology results of the biopsy. Note: Be sure to find out the specifics of the pathology slides your cancer center requires. I brought stained and had to make another trip to bring unstained.
- Be prepared to find out just how powerful your love is. Spend all the time you can with family.
- After the pathology results are in and slides/reports have been received by your primary doctor and cancer center of your choice, you need to check on whether a PET scan will be needed. If so, get this scheduled as soon as possible. While the cancer center of your choice might make an appointment with you now that the cancer type has been verified, a treatment plan can not be put together until the PET scan. This procedure will show if the cancer has spread from where it originated. Once this is done your cancer can be staged and a treatment plan put together. The radiology report usually takes just one business day to complete.
- Ask yourself if you might like to have a back up, local oncologist on stand-by should the need ever arise. Kathy and I are trying to cover every angle of this battle. We do not want to chance an emergency coming up in the future with our only option being to drive over an hour to Memorial Sloan Kettering Cancer Center. We want an oncologist that works out of our local hospital that has a fantastic emergency room only 15 minutes from our home.
- Begin a journal. This is helpful when discussing symptoms and mental state with your doctors. It is also a good form of therapy. Not just for the patient, but the care giver as well.
- If your PET scan shows that the cancer has not spread then the cancer center should be able to tell you what your treatment plan will consist of. If the cancer has spread then they may want to go in and do another biopsy. Kathy’s PET scan revealed that the cancer had spread to a half dozen lymph node along her trachea and the pelvis region – more specifically, in the marrow of the ischium bone.
During this week, because the pathology reports of Kathy’s cancer have been received and reviewed by Memorial Sloan we are finally able to make our first appointment there. Our oncologist wants to start chemotherapy, but not until he sees the pathology report of the mass in her pelvis.
We ask the doctor if he is going to biopsy the lymph nodes around the trachea. He tells us he wants to go straight to the area that is the greatest distance from what he believes to be the starting point of the cancer, in her lung.
- Ask your oncologist if he can have further molecular testing done on the pathology slides to sub-categorize the type. This testing showed Kathy’s cancer to be of the KRAS mutation. Now we can be added to a data base that will be used to help other individuals down the road with this same type. The testing might also come in handy when treating your cancer.
Below you will find links provided by the American Cancer Society where you can gain a better understand of this:
Tests for Non-Small Cell Lung Cancer (see “Molucular Tests” section)
Targeted Therapy Drugs for Non-Small Cell Lung Cancer
>General Informaiton about Molecular Testing and Cancer:
Cancer in the Twenty-first Century (see “More targeted therapies” section)
Personalized Medicine: Redefining Cancer and Its Treatment
Tests used on biopsy and cytology specimens to diagnose cancer (see “Molecular genetic tests” section)
If you have any questions or need additional information, please visit The American Cancer Society or call their National Cancer Information Center at (800) 227-2345. Cancer Information Specialists are available 24 hours a day, seven days a week to assist you.
- We attend a consultation with the doctor that will be performing the bone biopsy on Kathy’s hip.
- If you need to stay a night near the facility you might want to ask the cancer center if any local hotels offer discounts for patients. If they do give you a discount code always ask the hotel for their regular rates also. At times, because the hotel’s prices fluctuate, the regular rate might be cheaper than with the discount code.
We chose to do this for several reasons. Although the drive is only a little more than an hour away the satellite facility we use is still in a suburb of New York City. The traffic is horrendous and we don’t want to chance an accident causing us to be late and possibly miss an appointment. The second reason is because it gives Kathy a chance to get a good night sleep only 3 minutes away from Memorial Sloan Kettering. Arriving well rested and refreshed has become very important to us both.
- Two days later the procedure takes place. Kathy feels nothing during the procedure and is sore for a week after. Nothing she can’t handle though. The pathology report will take 3-5 business days.
- Kathy is still sore from the bone biopsy but able to work.
- We meet with our oncologist, whom gives us the pathology results of the bone biopsy. In Kathy’s case the mass in her pelvic region has originated from the mass in her lung. They are both the same type, adenocarcinoma. We are told that her cancer has reached Stage 4.
- Ask your doctor if the PD-L1 level has elevated past 50%. We are told that the lung pathology report shows she has a cancer produced protein called PD-L1 elevated to a level of 80%, which puts her over the 50% level and qualifies her for Immunotherapy (Definition: Treatment of disease or other disorders by strengthening the body’s immune system). A relatively new treatment using the drug Keytruda, which does away with many of chemotherapy’s nasty side affects. Clinical trials show an impressively high percentage number of halting the tumor’s growth, and in some cases shrinking the cancer cells.
- Whatever treatment you will be receiving, ask your doctor if you can have a more resent CAT scan taken just before your first session of treatment. This image will be used to compare with a future image taken after you have gone through several sessions of treatment to see if the tumor growth/growths have slowed down or stopped completely.
In Kathy’s case, she will receive three sessions (each being three weeks apart) and just before the forth session she will be given another CAT scan which will be used to compare the tumor sizes with the last scan taken a few days before she started treatment.
- Our doctor’s answer to the question, “What is our ultimate goal here with this treatment? Our best case scenario?”
Answer: “Kathy will always have the cancer in her body. Therefore she will need to receive treatment for the rest of her life. The purpose of the treatment will be to stop the cancer cells from multiplying, stop it from spreading, and hopefully shrink it.”
- Germ proof your home and practice good hygiene. We bought numerous bottles of Purell to carry on our person for trips outside of home and one bottle sitting next to our front door for guest to use before entering.
- As the days and weeks slowly, and oh so agonizingly slip by, you and your loved one might be lulled into a false complacency. You begin to adjust to the new norm of your life which involves lots of hugs, doctors visits, searching for aide of one form or another, and continuing as much of your normal routines as possible. We have discovered that the brave fronts we have put on throughout this ordeal are starting to unravel. No matter how tough you think you are, your mental health will suffer. Be prepared for breakdowns.There are so many hard questions that need to be asked. Look into therapy as a means to effectively deal with painful topics such as the future. The future? By far, this is the most difficult topic for us.
- Finally! 46 days after Kathy’s diagnosis her treatment will begin. 1st session of immunotherapy!
- Her only side effect has been fatigue felt the day after treatment sessions. After the first day she has felt completely normal, physically.
Below you will find a valuable list of resources that can help you:
US News Lists Top Cancer Hospitals for 2016
The US News rankings use four measures as part of the total score: reputation with specialists (27.5%); survival (37.5%); patient safety (5%); and other care-related indicators, including nurse staffing (30%).
- University of Texas MD Anderson Cancer Center, Houston
- Memorial Sloan Kettering Cancer Center, New York City
- Mayo Clinic, Rochester, Minnesota
- Dana-Farber/Brigham and Women’s Cancer Center, Boston
- UCLA Medical Center, Los Angeles
- Moffitt Cancer Center and Research Institute, Tampa, Florida
- Seattle Cancer Care Alliance/University of Washington Medical Center
- Cleveland Clinic
- Johns Hopkins Hospital, Baltimore
- UCSF Medical Center, San Francisco
- Massachusetts General Hospital, Boston
- Hospitals of the University of Pennsylvania-Penn Presbyterian, Philadelphia
- Stanford Health Care-Stanford Hospital, California
- Northwestern Memorial Hospital, Chicago
- Barnes-Jewish Hospital/Washington University, St Louis
- University of North Carolina Hospitals, Chapel Hill
- New York–Presbyterian University Hospital of Columbia and Cornell, New York City
- USC Norris Cancer Hospital-Keck Medical Center of USC, Los Angeles
- Wake Forest Baptist Medical Center, Winston-Salem, North Carolina
- City of Hope, Duarte, California
Organizations For People With All Types of Cancer
For Young Adults
FORCE: Facing Our Risk of Cancer Empowered
The Mautner Project: The National Lesbian Health Organization
The LGBT Cancer Project: Out with Cancer
National LGBT Cancer Network
Redes en Acicon: The National Latino Cancer Research Network
The National Children’s Cancer Society Latina’s Contra Center
The Asian American Network for Cancer Awareness, Research and Training
African Women’s Cancer Awareness Association
Male Cancer Awareness Campaign
Singleton Moms: Community for Single Parents with Cancer
Mommy and Me Cancer Foundation: Moms with Cancer
Specific Types of Cancer
Bladder Cancer Advocacy Network
Head & Neck Cancers
Leukemia & Lymphoma
Travel Grants/Hotel Discounts
- American Cancer Society (Ask for Help in your area) – (800) 227-2345. Notes: They can offer you some great resources located near your home. All you have to do is ask. Very friendly and compassionate in their work.
- Patient Advocate Foundation – (855) 824-7941. Notes: American Cancer Society tells me this organization offers a one time, $300 Grant. I was unable to verify details by this journal’s publication day.
- Cancer Support Community – (888) 793-9355. Called and spoke to a representative. Notes: Ask for TAG Grant information – Gas card program, possibly worth $200. To qualify your combined gross household income must be below $39K.
- Good Days – (877) 968-7233. I was unable to verify details by this journal’s publication day.
BUS TO TREATMENT
- Cornell Campus to Campus Bus
- Angel Wheels to Heal (formerly known as Angel Bus
- FLIGHTS TO TREATMENT
- Corporate Angel Network (seats are regularly available from the Elmira/Corning Airport to NYC)
- Wings Flights of Hope
- Angel Flight NE
- Mercy Medical Airlift
LODGING WHILE UNDERGOING TREATMENT
- American Cancer Society (Ask for the Hotel Partner Program) – (800) 227-2345. Notes: On your first call they can create a patient file. They’ll then request you call them at least 5 days prior to the day you will need the room. They will search the area of the treatment center for free/discounted room. They found a room for Kathy and I, regular $109 discounted to $49.
- Joe’s House: A Lodging Guide for Cancer Patients
- National Association of Hospital Hospitality Houses
- Hotel Tonight is an excellent app that helps you find last minute hotel rooms at a discount. It’s great if you need to find a room in NYC within the week.
If you need help you must get busy and start searching. DO NOT count on one organization for several reasons. You might make too much money, you might have a disease not on their coverage list, you might live too close to the treatment center, or they may have run out of funds. Most importantly however, this cancer is yours or your loved ones. No one will feel the urgency you do to get things in motion. It is your responsibility to find help and get things moving. You might have to say things your not use to saying in order to speed some lackey up in his/her job. Do it! This is a battle and your the general.
First, do your research, then grab your phone, pen, and pad. Make sure you wont be disturbed, and start calling. Good luck and remember that you are not in this alone. Mine and Kathy’s prayers are with you all!