A step-by-step guide that better equips and empowers your response to your cancer diagnosis.

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Patient Toolkit & Navigator

A step-by-step guide that better equips and empowers
your response to your cancer diagnosis.

Newly Diagnosed

Be Willing & Open
Take that next step

Patient Toolkit

Know what you must know
Tick off every step

Bio Markers Matter

Cancers are mutations
Know your mutations

Clinical Trials

A window of opportunity
Ask your Doctor on this

Join a community

Accelerate your learning
Ask Questions

Patient Navigator

A step-by-step guide that better equips and empowers your response to your cancer diagnosis.

Navigator | Notes | Community | Mentor | Education | Resources

Navigator | Notes | Community | Mentor | Education | Resources

Peer to peer – Patient to patient
Important Note

The Cancer toolkit content is a peer-to-peer initiative by patients and caregivers for patients and caregivers.

In general, the content is distilled from the collective knowledge, experience, and wisdom of successful globally connected patients and caregivers.

It begins with you, we just help you help yourself.

It is vital that you focus on becoming the best patient you can possibly be, yes this is your responsibility that generates a culture that will inspire all your supporters to also rise up and beyond their everyday best.

Magic pills and cure-alls

If there was ever a magic pill in the cancer world, then it comes from you doing the right things in the order they must be done. This requires knowledge and discipline at a time when you the patient are overwhelmed by the unknowns.

This is how the Cancer toolkit helps you, the toolkits provide you with the checklists to bridge the cancer knowledge abyss and a roadmap to guide you step-by-step forward beyond the diagnosis.

The next generation in patient success

Successful patients share common traits, especially since the inclusion of “Next generation Sequencing” (NGS)

The Patients who are managing to bridge the cancer knowledge abyss and increase participation in their own treatment process are showing better outcomes. So that’s what the Patient Toolkit helps with – a starting point to guide you in the right direction from the very moment you are diagnosed.

Your greatest obstacle

As a “Newly Diagnosed Patient” your greatest obstacle is “not knowing what you do not know.” The greatest resource you possess is to “Begin knowing.”

Focus on what you have control over

Science + Medical Breakthroughs + Application & YOU

Do not become overwhelmed by what you cannot control or understand, begin with what you can control – YOU.

Begin by controlling your basic building blocks …

  1. Commonsense – creates poise & rhythm
  2. Simplicity – creates control & reduces chaos & overwhelm
  3. Be the best you can be – it will inspire others & in turn yourself
  4. Surround yourself with people of great character, talent, and integrity – people who will help lift & enhance your effort and outcomes
Uncloaking the unknowns

Just as science is helping uncloak how cancer evades our immune system, the Patient Toolkit is helping you uncloak “what you do not know” and “know what you must know.”

Your “Next Step” responsibility

The best response to a serious cancer event begins with taking your next step and the one beyond that, no matter how small or insignificant it may seem in the moment. Your momentum begins from deep within, let it rise up and reach for its reality. Not everything can be measured by science alone!

The opportunity ahead

We live in a fast-evolving era of change which is providing greater life-extending options at the intersection created by Genomic Profiling, Medical treatment breakthroughs, and a greater willingness by patients to learn and engage with their physicians and treatment options.

All the best with the challenge ahead
Steve Holmes 

Fellow Patient
Cholangiocarcinoma

Caregivers are an essential component in successful cancer outcomes.

Characteristics to consider when choosing a caregiver.

  • Good Listener

    Good listeners lighten the load and ease the stress.
    Choose someone who can listen to you without judgment, someone who understands you well.

  • Environment

    Building environments that heal is not easy alone.
    Choose someone who can ask you questions and help you build an open and willing environment around the challenge ahead. This takes time but will help immensely.

  • Team builder

    Cancer is not a challenge you tough out on your own – share the load and its burden.
    Choose someone who knows you well, and can develop a team around both of you.

  • Support Role

    You will need an extra set of eyes and ears as well as physical support.
    Choose a person who can help you manage the avalanches of information, appointments, and overwhelm, someone who can drive and support you physically when needed.

  • Advocate

    Caregivers are often your advocate in the first instance, and will often enlist the help of others who can advocate for both of you. Choose a caregiver with who you are comfortable speaking on your behalf when you can not. Most patients find advocating for themselves very difficult and often do not ask all the questions or articulate what needs to be said.

  • Decision making

    Foundation for good decision making.
    Choose a person that can help you organize questions, simplify choices, and generally build a good foundation to make decisions.

Surgery is often the only curative option for a serious cancer diagnosis, please ensure that you have fully pursued this as an option.

If your cancer has already spread beyond its primary point of origin, this is called Metastasis and will in most cases remove curative surgery as an option.

If surgery is not an option, your next priority is to ask your surgeon if they can obtain a biopsy (tissue sample) this is very important and may open up more treatment options.

  • Important
    When it comes to treating serious cancer, specific expertise can mean the difference between life and death.

Surgeons specialize in specific cancers – find your match.

Characteristics to consider when choosing a surgeon that best fits your exact diagnosis.

  • Expertise & Experience

    Choose a surgeon who has both current experience and expertise in your specific diagnosis.
    This is an important distinction that influences outcomes.

  • Personality

    Good communication and dialogue skills matter, they foster the best outcomes.
    Choose a Surgeon who is open-minded and willing to include your observations, suggestions, and questions. Do not allow yourself to become just a number.

  • Clinical Trials

    Choose a surgeon who is current and connected to clinical trials.
    Clinical Trials offer a vital window into post surgery treatment options.
    Surgeons who are connected to Oncologists that conduct Clinical Trials provide you with an advantage.

  • Second & Third Opinions

    The fear of being disloyal holds patients back from seeking another opinion.
    Successful Cancer Patients share a common trait, they seek second or third opinions.
    Good Surgeons are comfortable with this and will support your initiative. Click here for a fuller explanation

  • Important
    When it comes to treating serious cancer, specific expertise can mean the difference between life and death.

Oncologists specialize in specific cancers – find your match.

Characteristics to consider when choosing an Oncologist that best fits your exact diagnosis.

  • Expertise & Experience

    Choose an Oncologist who has both current experience and expertise in your exact diagnosis.
    Knowing of the cancer type is not the same as having current experience & knowledge with it. This is an important distinction and factor that influences outcomes.

  • Personality

    Good communication and dialogue skills matter, they foster the best outcomes.
    Choose an Oncologist who is open-minded and willing to include your observations, suggestions, and questions. Do not allow yourself to become just a number.

  • Clinical Trials

    Choose an Oncologist who is current with and or willing to include Clinical Trials as part of your treatment plans. Clinical Trials offer a you a greater choice of treatment options. Clinical trials have become a vital treatment option to patients with life-threatening cancer diagnoses, so it is important you discuss this before engaging an Oncologist.

  • Second & Third Opinions

    The fear of being disloyal holds patients back from seeking another opinion.
    Successful Cancer Patients share a common trait, they seek second or third opinions.
    Good Oncologists are comfortable with this and will support your initiative. Click here for a fuller explanation

  • Important
    When it comes to treating serious cancer, specific expertise can mean the difference between life and death.
Oncologist Post Surgery Checklist

Download & Print

Characteristics to consider when choosing a Hospital

Often the best Hospitals are frequented by the best Oncologists.

  • Major Center Hospital

    City Hospitals consistently provide the best resources and results.
    Choose a City or major center hospital with modern medical technology.
    If you cannot access a major city or center, then choose a hospital that is aligned with one.

  • Cancer-Specific Hospital

    Specialist Cancer Hospitals are equipped with the best resources
    Hospitals are not all equal, try to choose a hospital that has a substantial cancer resource and has a reputation for this.

  • Clinical Trials

    Does this hospital conduct clinical trials for cancer?
    Choose a hospital that is a current host to Clinical Trials for Cancer. This will expose you to more choices.

Knowledge of your cancer empowers your choices.

Understanding your cancer begins with an open mind and a willingness to lean into what you do not know or understand. Do not be intimidated -just begin.

  • Primary tumor

    The primary tumor means your original tumor.
    Ask your Physician to describe where it is located, many will sketch the location on a hand drawing to help you understand.

  • Primary tumor location

    Many Primary tumor locations are further described by a sub-location. 
    The exact location guides your Physicians decision-making and treatment options.  As a patient, it is also important that you know and understand this so you become better equipped to make choices and decisions.

  • Secondary tumors are called Metastasis

    Has the primary tumor spread or moved elsewhere?
    When cancer spreads to another location this is called metastasis, ask your Physician to explain where it has spread to.

IHC test – immunohistochemical

Ensure that your Surgeon or Oncologist requests an IHC test immediately after your biopsy is obtained. This is a simple and time-efficient test that discovers known tumor markers aligned to current immunotherapy treatment options.

  • IHC = Immunohistochemistry

    A test often overlooked and underestimated by Oncologists
    A simple cost and time-efficient tissue staining test, which takes 3 – 5 days at around $500.
    It requires a biopsy that is obtained from the primary tumor during surgery, or by other investigative methods, if surgery is not an option.

  • Biomarkers

    IHC tests can highlight biomarkers that are known to match current clinical trials.
    PD-L1, HER2, MSI-High indicate that you may match a current immunotherapy clinical trial or treatment. For example; A result that highlights PD-L1 & or MSi-high means that an “Immune Checkpoint” (ICI) Immunotherapy could be an option. Knowing this information will increase your treatment choices. Ensure you ask your Oncologist (or surgeon) about relevant biomarkers that can be discovered in an IHC test.

  • Immune Checkpoint Pathway

    As a newly diagnosed patient, you must know if your biopsy’s biomarkers are a match for “Immune Checkpoint Inhibitor treatment, before committing to any treatment options. Cancer is potentially able to evade the immune response by expressing PD-L1 on its surface, an IHC test will discover this. Another confirmation indicator is an MSI-high measurement of the tissue sample. Please ensure you tick this very important task off your checklist.

Genomic Profiling is saving lives

If your IHC test does not reveal biomarkers that match a current clinical trial, then it is wise to discuss genomic profiling with your Oncologist. About Molecular (Genomic) Profiling

NB: If you are unable to obtain a biopsy of your solid tumor consider a “Blood Biopsy.” Blood, biopsies are constantly improving in scope and consistency of results.

  • Molecular (Genomic) Profiling is essential

    Allow 4 to 6 weeks from submission to results.
    Profiling your cancer shines a light on what mutations are driving the tumor growth, it provides a roadmap on how to intervene and eliminate the cancer. Without a Molecular Profile, your Oncologist will not know what is driving the tumor growth and can only apply historic first-line Chemotherapy /Radiation treatment options. 

    • Be specific in your request

      Ensure that your Oncologist requests that PD-L1/MSi and TMB results are highlighted in the reports notes. There will be other biomarkers depending on the type of cancer you have. An oncologist who is current and experienced with your specific diagnosis will know these. You may need to insist on this, you cannot just assume this will be done.

    • What is driving tumor growth

      Focus on exactly what is driving tumor growth.
      Molecular Profiling is complex and thorough in examining both your tumors genetic and genomic makeup. It will reveal the mutations (abnormalities) that is causing otherwise healthy cells to become cancerous. This is the specific area where you must focus your research energy.

    • Molecular Profiling and Treatment

      The future of cancer treatment is to discover & target the exact mutations on (or within) the cancer cells, no matter where the cancer is located.

      Cancer treatment has evolved substantially through immunotherapies that can now target the exact mutation. Historically chemotherapy and radiation have been the only tools for Oncologists. Chemotherapy typically provides a wider attempt to kill cancer growth with specifically designed chemicals. Immunotherapy provides more specifically targeted options to help the immune system see and eliminate the cancer. Immunotherapy is providing genuine medical breakthroughs at a level not seen since the discovery of penicillin in 1928.

    Are you a candidate for a clinical trial”

    Please ensure you have a conversation with your Surgeon or Oncologist about your eligibility for a clinical trial. Clinical trials are an essential component in a patient’s treatment toolkit. There are many reasons why people choose to join a clinical trial, set out below are some key points when considering Clinical Trials.

    • Clinical trials are research studies performed on people that are aimed at evaluating a medical intervention. (ie new treatment option)
    • Often a clinical trial is used to learn if a new treatment is more effective and/or has less harmful side effects than the standard treatment.
    • The principal reason that a patient will join a clinical trial is that their current first-line treatment is not working, or there is no first-line treatment available for their specific diagnosis.
    • Clinical trials offer patients the opportunity to become involved in treatments that may well become tomorrow’s standard of care. It is important that your Oncologists are conversant/aware of current trial options.
    • Trials operate on very strict protocols with patient safety and well-being as the number one goal.
    • As a Clinical Trial participant, you are able to withdraw from a trial at any time.

    If your local community health has limited Clinical Trial options available please do not be dissuaded from researching all possibilities no matter where the Clinical Trial is available. Your number one goal is to gain a full overview of the current options regardless of where they originate from or are globally located.

    Qualifying

    Clinical trials will require that you have the biomarkers that align to specific trial requirements hence the importance of obtaining a biopsy (tissue sample of the tumor) and having it tested, in the first instance a simple IHC test (3-5days) and inexpensive and thereafter a full molecular (Genomic) profile.

    Assumptions

    It would be a significant mistake to assume that your surgeon or Oncologist will automatically engage an IHC (Staining test) on your behalf. You will need to ensure or ask that this be completed.

    Please follow this link to gain a great overview of Clinical Trials

    Example of a more recent medical breakthrough in treating cancer

    There are many variations of this example

    • Join a Private Facebook Group

      You will find that specific focus groups have considerable patient and caregiver experience and are connected worldwide. Everyone begins with not knowing what they do not know, this is a very scary starting position but it is essential that you start – we all begin from this same position. 

      Many groups are part of cancer organizations that focus on and fund research on your exact cancer. Private Facebook Groups are Private and respectful, with rules of membership. Groups are often formed separately for the patient and caregiver to ensure transparency and full engagement.

    • Facebook Groups are very resourceful

      Facebook Groups are very resource and experience-rich and will educate you on what to read and research.
      Groups and their members will help you screen out avalanches of irrelevant information that can overwhelm you.

    • Facebook Groups provide a window on what is working today.

      The medical communities information channels typically move very slowly.
      Highly focused private Facebook groups share results and upcoming treatment options, they have considerable global patient and caregiver connections and experience. Think of these groups as real-time in terms of results and new options that you and your oncologist will not be aware of.

    • NON Facebook Groups

      Many cancer organization websites run their own private member-only groups, ie not a Facebook Group. Please be aware that these types of groups can be less worldly and more insular in their shared knowledge.

    • Become Open and Willing to Communication

      It is very important to create a communication foundation that allows you to express yourself as yourself, this will help you learn and move forward more efficiently.

    Questions open up your willingness, your inner momentum, and potential. Questions increase your ability to learn, move forward, and regain control. Asking questions will help you become the best you, the best patient that you can be. 

    Checklists and Question sheets

    This section is currently being developed

    Terms used in the order of appearance
    Note:     The medical community language and description are not always in sync. Different names and terms are used. This is confusing to the patient and caregiver, we try our best to overcome this.

    Caregiver
    The person who helps you function on an everyday basis

    Advocate
    People who can speak up, advance the patient and caregiver questions, and generally support the effort. Often patients and their Caregivers have several advocates who have different skills

     Clinical Trial
    Clinical trials are a type of research that studies new tests and treatments and evaluates their effects on human health outcomes.

    Tumor
     Tumors are a mass of tissue that’s formed by an accumulation of abnormal cells. Normally, the cells in your body age, die, and are replaced by new cells. With cancer and other tumors, something disrupts this cycle.

    Primary Tumor
    This is the original tumor location

    Biopsy
    This is a tissue sample that is obtained from the actual tumor.

    Immunohistochemical – IHC 
    A test that stains the biopsy sample with a chemical solution to highlight the presence of known biomarkers.

    Biomarkers
    A biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease. A biomarker may be used to see how well the body responds to a treatment for a disease or condition.

    Immune Checkpoint
    The Immune Systems killer T Cell has a failsafe switch to turn off any accidental attack on a healthy cell. Cancer has learned how to turn off this switch and continue growing.

    Immune Checkpoint pathway
    The Immune Checkpoint pathway refers to the interaction between the killer T Cells and the surface of a normal cell. The T Cell has a PD-1 ligand on its surface and a healthy cell has a PD-L1 ligand on its surface (a matching pair), when these two meet and interact it turns off the unwanted T Cell attack – Cancer has learned to hide behind this by expressing PD-L1 when a T Cell approaches.

    Immune Checkpoint Inhibitor -ICI
    This is an immunotherapy drug – a monoclonal antibody designed in a laboratory that interferes with the T Cell’s “Checkpoint Switch” by locking in the “On” position, so the T Cell can continue and illuminate the cancerous tumor. 

    Keytruda
    Keytruda is a monoclonal antibody created in a laboratory and infused into the patient.  Keytruda is not a chemotherapy treatment.

    Monoclonal Antibodies
    Monoclonal – means they are designed to perform a single purpose or task.

    1. Monoclonal antibodies are made in a laboratory and are used to block the activity of abnormal proteins detected on infected cells. They are often designed to attach themselves to protein receptors on the surface of cells infected by viruses, essentially acting as a broadcasting beacon /marker that alerts our immune system to attack.
    2. Monoclonal antibodies have also been developed to be used as an immunotherapy and help turn the immune system against a cancerous cell. For example, some monoclonal antibodies mark cancer cells so that the immune system will better recognize and destroy them, while others such as Keytruda act as a blocking mechanism. See the video section.

    Immunotherapy
    Think of immunotherapy drugs as specially designed actions that interfere with what is driving the tumor growth. A lot like a computer has code that goes wrong and a new “patch’ or string of code has to be added as a workaround. Immunotherapy is being referred to as the first ever cancer cure – a modern-day penicillin moment in history.

    Monoclonal
    Simply this is an antibody designed in the laboratory to perform one single function/purpose.

    Molecular Profile
    This is a comprehensive examination of a biopsy sample. It examines the genetic and genomic makeup of the sample provided. 

    Genetic
    Genetics is a term that refers to the study of genes and their roles in inheritance – in other words, the way that certain traits or conditions are passed down from one generation to another. Genetics involves scientific studies of genes and their effects. Genes (units of heredity) carry the instructions for making proteins, which direct the activities of cells and functions of the body. Examples of genetic or inherited disorders include cystic fibrosis

    Genomic
    Genomics is a more recent term that describes the study of all of a person’s genes (the genome), including interactions of those genes with each other and with the person’s environment. Genomics includes the scientific study of complex diseases such as cancer because these diseases are typically caused more by a combination of genetic and environmental factors than by individual genes. Genomics is offering new possibilities for therapies and treatments for some complex diseases, as well as new diagnostic methods.

    NCI Directory of Medical Terms

    APC
    Antigen Presenting Cells: The immunes messengers.

    B Cells
    B Cells have 2 primary functions (1) Produce the ‘antibodies’ and (2) Produce memory cells for any future threats.

    CTLA-4
    A Check Point protein that sits on the surface of the T Cells. They prevent mistake attacks on healthy cells.

    Car T Cells
    A new innovating immunotherapy technique

    IHC 
    Immunohistochemistry test chemically stain the tissue biopsy looking for a response that indicates the presence of PD-L1, MSi, HER2 that are known match’s for current Immunotherapy treatments.

    Ligand
    An elongated strand of protein receptor that anchors to a cell surface. (ie PD-L1 is a Ligand receptor)

    Molecular Profiling
    Provides a DNA road map of the tumors fingerprint (Genomic) and your hereditary fingerprint (Genetic)

    Microsatellites
    Microsatellites are stretches of DNA that contain a repetitive sequence of nucleotides

    Nucleotides
    Nucleotides are the repetitive strings of DNA code that make us – us. example of a code  string;  “AAAAA or CGCGCGCG”  (codes are short tandem sequences that replicate)

    MSI
    Is a measure of Microsatellite Instability

    MSI-LOW
    Is a low recorded measure of Microsatellite Instability.

    MSI-HIGH
    Is a high recorded measure of Microsatellite Instability.

    MSS
    Is  Microsatellite Stable, which means no instability is present

    MMR
    Mismatch Repair is the DNA repair pathway that plays a key role in maintaining our genomic stability. MMR is our “Spell Checker” correcting any errors in our DNA replication process as they occur.

    MMR
    Is made up of 4 proteins (MLH1, MSH2, MSH6, & PMS2 )
    Think of MMR as our bodies DNA Spell Checker – DNA replication often goes wrong and the MMR genes correct this.

    dMMR
    Deficient Mismatch Repair means that one or more of the 4 MMR proteins absent and as a result, the MMR is not functioning correctly and is described as deficient
    Think of dMMR as our bodies DNA Spell Checker that has become broken and as such is letting DNA replication mistakes continue unchecked.

    TMB
    Means Tumour Mutation Burden
    High TMB is gathering attention as a biomarker indicator that immunotherapy treatments could prove successful.

    PD-L1
    means Programmed Death Ligand 1 – a cluster protein that generally coats and protects healthy cells from the immune systems T Cells

    PD1
    Is an Immune Check Point Inhibitor – its function is to switch off a T Cell attack. It does by binding and communicating with the PD-L1 anchored to a cell surface.

    PD-1/ PD-L1 Pathway
    A communication pathway/channel that dampens or deactivates (switches off) an immune response – (T Cell attack) on healthy cells.

    HER2
    Is a growth receptor gene often found on the surface of breast cancers cells – too many receptors cause cells to grow and divide too quickly, Immunotherapy treatments have shown positive results in blocking this growth pathway.

    The library is a new addition and will be consistently upgraded

    Helping you help yourself

    Toolkit Objective and Direction

    The biggest threat to patient success is newly diagnosed patients “not knowing what they do not know.” So that’s what the Patient Toolkit helps with, it helps you “know what you must know” from the very moment of diagnosis.

    The toolkit provides highly specific and targeted content distilled from successful globally connected patients & caregivers.

    1. A critical bridge across the cancer diagnosis abyss
    2. A pathway beyond your diagnosing physician’s office
    3. “Hope” with the structure it needs to move forward

    The next generation in patient success is coming from those who are managing to bridge the cancer knowledge abyss and increase participation in their own treatment process. 

    I sincerely hope this toolkit helps you become the best patient you can be and as a result, achieve your best possible outcomes,

    Kind Regards
    SteveH
    Fellow Patient