CARL’S CANCER COMPENDIUM

This searchable webpage is intended to serve as a starting point for all things cancer. It does not purport to answer questions or advise, but rather funnel those with questions in search of answers to reliable websites that answer their questions. Since this page is evolving, it can be that there might not be links (an oversight) for every “conclusion.” In those cases, we recommend that you Google the information, using keywords on this page for the topic that interests you, and you will likely find our source and more. Note also that if a subtopic is not bolded, we are still working on it (even if there is a partial listing already).

Carl’s Cancer Compendium (CCC) is currently in progress and by its very nature will remain in progress even when all current anticipated topics have been addressed. Please forbear while the various topics continue to be addressed.

When Carl Leaver, the co-owner of MSI Press LLC and its principal graphic designer and typesetter, lay dying, his family spent valuable time searching out answers to his condition and needs that family members would have preferred to have spent with him. It is hoped that this page, over time and with the help of those who read it, will become robust enough to fulfill those unmet needs for families of future sufferers from cancer so that a quick hop onto this page will funnel readers to the panoply of information and resources needed without their having to invest immense time combing through the Internet and sorting chaff from wheat. If you have a need for information not contained here, drop us a line so that we can research it and include it: info@msipress.com.

WHAT IS CANCER?

Cancer is a disease resulting from uncontrolled growth and division of abnormal cells.

DICTIONARY OF TERMS RELATED TO CANCER

Dictionary of Terms Related to Cancer v 11 10 21 provides a searchable list of definitions for the words, terms, phrases, and concepts most frequently found in cancer diagnoses and treatment. This is a work in progress; check back periodically for newer versions of the dictionary. We are also accepting requests from readers for additional terms; send requests to info@msipress.com. It is hoped that this will be especially helpful in reading medical reports, scan results, and oncology notes.

CCC CONTENT

The CCC is divided into two sections: specific information and other information.

The specific information section of this webpage is organized alphabetically into the following topics, which can be searched through the find function (command F) or just located by moving down the page alphabetically:

  • cancer causes
  • cancer centers
  • cancer stages
  • cancer symptoms
  • cancer treatments
  • cancer types
  • comorbidities
  • conditions related to cancer
  • diagnosis and testing
  • diet
  • doctors who treat cancer
  • end of life cancer-related considerations
  • organizations dedicated to cancer research, information, resource identification, and support functions
  • patient and family support
  • prevention

The other information section that follows that deals with

  • animal cancer
  • resources
    • annotated list of highly recommended book resources, with links
    • ask an expert (and get an answer)
    • blogs
    • financial resources & support
    • helplines
  • future website plans.

********************

SPECIFIC INFORMATION

CANCER CAUSES

Causes differ according to the type of cancer. Where known, specific causes are listed below under each cancer type. There are, however, a few conditions that are commonly known to cause cancer. Below are some of the generic causes of cancer; some may be more strongly linked with one or another type of cancer; others may be linked to a panoply of cancers. The American Cancer Society provides an in-depth look at a number of these causes.

  • alcohol
  • inactivity, including a lot of sitting
  • obesity
  • radiation exposure (including as a cancer treatment — it can cause a secondary cancer)
  • radon
  • smoking
  • sun exposure
  • tobacco
  • unhealty diet (especially high-calorie foods, fat, added sugars)

CANCER CENTERS

The list below contains links to information about major cancer centers. While we would like the list to be comprehensive, we depend upon readers to provide us with information about leading centers we may have missed. From the research that we have done, all of the centers listed are considered by one rating organization or another as among the top cancer treatment centers in the US.

CANCER STAGES

The different stages of cancer describe how far the cancer has grown and spread at the time of diagnosis. Stages are used to describe the spread of solid tumors, like breast, bowel or lung cancers. The stage depends on how big the tumors are and how/if they have spread. Blood cancers, such as leukemia or myelodysplasia, behave differently and are staged in different ways.

The National Cancer Institute site explains the stages and how they are determined. They use a system called TNM, where T = size of the main tumor, N = whether the cancer is in nearby nodes, and M = the extent of metastasis (the spread of cancer to other body parts beyond where it started).

  • Tumor Stages
    • Stage 0. Presence of abnormal cells that could turn cancerous but are not yet cancerous and may remain always abnormal without turning into cancer. Also called carcinoma in situ.
    • Stage 1. Cancer is present, small, and only in one area. This is also called early-stage cancer.
    • Stage 2. Tumor is present, larger, and can be found in nearby tissues.
    • Stage 3. Tumor is large and has spread to nearby tissues and lymph nodes.
    • Stage 4. Cancer has spread to other (distant) parts of the body. This is also called advanced or metastatic cancer.
  • Blood Cancer Stages
    • Chronic. Earliest phase.
    • Accelerated. Nonresponsive to treatment and more aggressive
    • Blastic. Most aggressive.

CANCER SYMPTOMS

Cancer is called the silent killer because it often goes undiagnosed until the later stages when it is more difficult to cure (and, for Stage 4, incurable.) Cancer symptoms vary by type of cancer and symptoms specific to a particular type of cancer are given below for the various cancer types. That said, some symptoms seem to be generic to many cancers. Here are some of them; you will notice that they could be symptoms of a wide range of medical problems, not just cancer. If you have them, though they seem innocuous and perhaps only annoying, get them checked out, especially if you have any comorbidities at all. It may save your life, or the life of a loved one with these symptoms.

  • headache
  • significant, sudden weight loss
  • loss of appetite
  • dizziness or falling (any time you fall for no obvious reason, such as a tree root got in your way while hiking, you should go to the ER and get checked out)
  • fungus (research ongoing and not yet definitive, but some things are known, and there seems to be a circular influence with the suggestion that fungi cause cancer and cancer causes fungus); the bottom line is that a fungus should be checked out further than just the typical perfunctory response, “we cannot do much about fungus”
    • cancer, a weakened immune system, and cancer treatments can cause fungus growth
    • the secondary byproducts of fungal growth, mycotoxins, is known to cause cancer in animals and there is consideration that it may also cause cancer in humans (mainstream oncology is not yet saying much about this)
    • note: cancer itself is not a fungus (this is a widespread myth); here is some evidence putting the myth to rest
  • pain
  • fever
  • lump beneath the skin
  • itchy or irritable skin
  • wounds that do not heal
  • tongue or mouth bumps
  • trouble swallowing
  • indigestion
  • changes in bowel movements
  • changes in urination
  • bleeding
  • voice changes
  • coughing

CANCER TREATMENTS

There are always new kinds of treatments being considered and new studies underway. These are the common ones right now. Please see the individual cancers listed above as to the treatments associated with each of them.

  • Chemotherapy
  • Clinical Trials
  • Gene Therapy
  • Hormone Therapy
  • Immunotherapy
  • Radiation
  • Surgery
  • No treatment
    • May be chosen for financial reasons.
    • May be chosen for logistical reasons – patient location would make constant transportation for therapy difficult or impossible.
    • May be chosen for religious reasons.
    • May be chosen for emotional reasons (fear of side effects of therapy, preference for a calmer end to life)
      Doctors and longevity studies can tell patients what to expect without treatment, including illness, pain, and stages of dying.

CANCER TYPES

There are many types of cancer. We will be adding to this of resources related to various kinds of cancer over time, hoping to make the list comprehensive. There are a number of sites that talk about various cancer types, but none, we have found, are exhaustive. Neither are we–yet, but we aim to be. We welcome information about additional resources about which we may not know.

The list here is intentionally meant to be succinct. The references listed will provide more colloquial descriptions and even interactive information and assistance. CCC attempts only to consolidate useful links, sort of like a restaurant menu that also links to recipes!

  • Acute Lymphocitic Leukemia (Acute Lymphoblastic Leukemia)
    • Definition: Bone marrow cancer that begins in the immature white blood cells
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Acute Myeloid Leukemia
    • Definition: A type of blood cancer where excess immature white blood cells or myeloid line of blood-forming cells is made by the bone marrow.
    • Cause
    • Diagnosis & Symptoms
    • Life Expectancy
    • References & Research
    • Treatment
  • Adenocarcinoma
    • Definition: Cancer that starts in glandular tissues that make mucus or fluid, such as the lung, breast, prostate, or colon. Adenocarcinomas are considered a specific type (subtype) of carcinomas.
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Ressearch
    • Treatment
  • Anal Cancer
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Ressearch
    • Treatment
  • Angiosarcoma
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Ressearch
    • Treatment
  • Bile Duct Cancer (Cholangiocarcinoma)
    • Definition: A cancer that begins in the bile duct.
    • Cause: Mutations in DNA of the cells of bile ducts. Risk factors include:
      • Chronic problems in the bile duct
      • Age: middle-aged and older than 65
      • Obesity
      • Family history
      • Excessive alcohol intake causing liver cirrhosis
      • Smoking
      • Exposure to hazardous chemicals
      • Chronic inflammation of the bile duct
      • Liver or bile duct diseases- Hepatitis B or C
      • Parasitic infection
    • Diagnosis & Symptoms
      • Jaundice
      • Fever
      • Abdominal pain
      • Sudden weight loss
      • Loss of appetite
      • Itchy skin.
      • Darkening of stool or urine
    • Life Expectancy
    • Reduction of Risk
      • Quit smoking
      • Get vaccinated against Hepatitis B
      • Treat hepatitis infections to prevent cirrhosis
    • References & Research. Check out the following websites for more information about bile duct cancer.
    • Treatment
  • Bladder Cancer
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Ressearch
    • Treatment
  • Brain Cancer
    • Definition
      • Glioblastoma
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Breast Cancer
    • Definition: A cancer that develops in the breast cells and progresses in stages.
    • Cause:
      • alcohol
    • Diagnosis & Symptoms
      • new lump in the underarm or in the breast
      • itching or discharge from the nipples
      • skin texture change of the nipple or breast
    • Life expectations
    • References & Research
    • Treatment:
  • Cancer of Unknown Primary (CUP); also called Occult Cancer
    • Definition: Cancer of unknown primary is a disease that has metastasized (spread) from another part of the body. The place where it began, also called the primary site, is unknown. These cases make up about 2% to 5% of cancers diagnosed in the United States. CUP is associated with poor diet and obesity, but no objective proof that these conditions cause CUP. CUP carries a poor prognosis in most cases. There are several types of CUP:
      • Adenocarcinomas: About six of every 10 cancer of unknown primary cases are adenocarcinomas, meaning they began in gland cells. Most frequently, the primary sites are the lung, pancreas, breast, prostate, stomach, liver, or colon.
      • Poorly differentiated carcinomaCancer cells are present, but they do not have enough detail for doctors to decide the type of cancer. Around 10% of these CUP cases are found to be lymphoma, melanoma or sarcoma.
      • Squamous cell cancer: The cells are flat, similar to cells on the skin or linings of some organs.
      • Poorly differentiated malignant neoplasm: Cells are definitely cancer, but they are so abnormal it cannot be determined what type of cell or part of the body they began in. Sometimes they are lymphomas, sarcomas or melanomas.
      • Neuroendocrine carcinoma: This type of CUP begins in the neuroendocrine system, making the cells like nerve cells and hormone-making cells. They are scattered in organs including the esophagus, stomach, pancreas, intestines and lungs.
    • Cause: Unknown. Suggestions include:
      • The immune system eliminates the primary tumor before the cancer is discovered by not before the tumor has spread to near-by or distant body parts.
    • Diagnosis & Symptoms. According to the American Cancer Society, there are as yet no screening tests that will diagnose CUP at an early stage.
    • Life Expectancy: This is a particularly aggressive cancer that is generally diagnosed at stage 4. Cancer of unknown primary (CUP) includes many different cancer types, so it’s hard to provide meaningful survival statistics for these cancers as a group. Life expectancy is typically 9-12 months following diagnosis, but cases are highly individual and statistics are generalized.
    • References & Research: Check out the following websites for more information about CUP.
    • Shared Experiences
    • Treatment
      • Chemotherapy is the most common treatment for people with cancer of unknown primary. Given by IV or as a pill.
      • Drugs to strengthen bones (where bone cancer is part of CUP) and to alleviate the effects of hypercalcemia.
      • Immunotherapy is currently available only after genetic testing and through a clinical trial.
      • Proton therapy
      • Radiation therapy is only used when cancer of unknown primary spreads to the spine and interferes with neurologic function.
      • Target therapy is currently available only after genetic testing and through a clinical trial.
  • Carcinoma
    • Definition: A cancer arising in the epithelial tissue of the skin or of the lining of the internal organs. A carcinoma in situ is a malignant tumor that is localized, i.e. has not spread from its original site
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Cholangiocarcinoma (see Bile Duct Cancer)
  • Chronic Lymphocytic Leukemia
  • Chronic Myeloid Leukemia
  • Colon Cancer
  • Colorectal Cancer
  • Esophageal Cancer
    • Definition: A malignant tumor of the esophagus,
      • Esophageal Cancer, Stages 1-4
      • Barrett’s Esophagitis, Pre-cancer, Stage 0
    • Causes
      • Risks from
        • Smoking
        • Alcohol use/abuse
        • Long-term irritation of the esophagus
        • Barrett’s esophagitis (more typically in men)
      • Hiatal hernia can lead to Barrett’s esophagus, which can lead to cancer
    • Diagnosis & Symptoms
      • Methods of diagnosis
        • Upper gastro-intestinal endoscopy to determine status of esophagus (more common nowadays)
        • Barium x-ray (more common in the past)
        • Tumor biopsy
      • Diagnosis from symptoms
        • Difficulty swallowing
        • Fullness, pressure, burning while eating
        • Indigestion
        • Heartburn
        • Vomiting
        • Small tumors generally asymptomatic
    • Life Expectations
      • Stage 4: average is 6 months after diagnosis
      • 5-year survival rate: 19.3%
    • References & Research
    • Treatment
      • Chemotherapy
      • Occasionally surgery
  • Gastric Cancer (see stomach cancer)
  • Gastroesophageal Junction Cancer
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Head & Neck Cancer
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Leukemia
    • Definition: A type of cancer which affects the production and function of blood cells. This causes swollen lymph nodes, recurrent nosebleeds, tiredness, frequent infections, weight loss, bleeding, and bone pain.
    • For more information, see subtypes (listed above)
      • Acute lymphocytic leukemia (ALL)
      • Acute myeloid leukemia (AML)
      • Chronic myeloid leukemia (CML)
    • Chronic lymphocytic leukemia (CLL)
    • References
  • Liver Cancer
    • Definition: A condition results from development of tumors in the liver cells.
    • Cause
    • Diagnosis & Symptoms
      • Jaundice
      • Pain in the upper right side of the abdomen or the lower right side of the rib cage; stomach pain
      • Poor appetite
      • Feeling full after consuming small portions of food
      • Swelling of the abdomen or legs
      • Weight loss
      •  Nausea
      • Fatigue
    • Life Expectations:
    • References & Research:
    • Treatment:
  • Lung Cancer
    • Definition: Cancer which begins in the cells of the lung.
    • Cause
      • risks
        • family history
        • passive smoking second-hand smoke)
        • HIV infection
        • radiation exposure
        • air pollution
        • substances in the environment: asbestos; chromium; arsenic; nickel; cadmium; tar; beryllium
      • tobacco smoke (90%)
    • Diagnosis & Symptoms
      • difficulty breathing
      • shortness of breath
      • constant coughing
      • wheezing
      • coughing up blood
      • chest, back, and/or shoulder pain
      • hoarseness
      • headache
      • weight loss
      • high blood pressure
      • high blood sugar
    • Life expectancy
      • 5-year survival rate when diagnosed at stage 4: 4%
      • Average prognosis when diagnosed at stage 4 and not treated: 7 months
    • Reduction of risk
    • References & Research
    • Treatment
      • chemotherapy
      • lobectomy
      • lung segmentectomy
      • lung wedge resection
      • pneumonectomy
      • radiation
      • targeted therapy drugs
  • Lymphoma
    • Definition: A cancer of the lymphatic system of the body involving immune cells.
    • Diagnosis & Symptoms
      • Swelling of lymph nodes in neck, armpit or groin
      • Fever
      • Night sweats
      • Difficulty in breathing
      • Weight loss.
    • Life Expectation:
    • Resources
    • Treatment
  • Melanoma
    • Definition: A type of skin cancer which develops from the cells (melanocytes) that control pigment of the skin.
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Myeloma
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Oral
    • Definition.
      • Mouth Cancer
      • Throat Cancer
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Ovarian
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Pancreatic Cancer
    • Definition: Cancer of pancreas, an organ which is behind the lower part of the stomach.
      • Endocrine tumors.
      • Exocrine tumors.
    • Cause
    • Diagnosis & Symptoms
      • abdominal pain
      • jaundice
      • itchy skin
      • fatigue
      • weight loss
    • Life Expectancy
    • Resources
    • Treatment
      • Chemotherapy
      • Drugs to alleviate pain
      • External radiation (external beam therapy)
      •  Surgery
        • Distal pancreatectomy
        • Palliative Surgery
        • Total Pancreatectomy
        • Whipple Procedure
  • Pleural Cancer 
    • Definition: A cancer that affects the lining or the cavities of the lungs.
    • Diagnosis
    • Life Expectancy: Most sources of statistics cite less than six months.
    • Resources
    • Treatment
  • Prostate Cancer
    • Definition: A cancer of the prostate gland, a part of the male reproductive system. (The prostate is a small walnut-shaped gland in males that produces the seminal fluid that nourishes and transports sperm.)
    • Cause:
    • Diagnosis & Symptoms:
      • blood in urine
      • blood in semen
      • painful ejaculation
      • erective dysfunction
    • Life Expectation
    • References & Research
    • Treatment
  • Renal Cancer (Renal Cell Carcinoma)
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Retinoblastoma
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Sarcoma
    • Definition: A rare type of cancer that grows in connective tissue like bones, nerves, muscles, tendons, cartilage and blood vessels of the arms and legs.
    • Cause
    • Diagnosis & Symptoms
      • abdominal pain
      • lump
      • bone pain
      • weight loss
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Skin Cancer
    • Definition: A condition that causes abnormal growth of skin cells.
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Stomach Cancer (Gastric Cancer)
    • Definition: A cancer that develops from the inner lining of the stomach.
    • Cause
    • Diagnosis & Symptoms
      • bloating
      • stomach pain
      • difficulty in swallowing
      • nausea
      • vomiting
      • fatigue
      • weight loss
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment
  • Von Hippel-Lindau Disease (VHL)
    • Definition: an inherited disorder characterized by the abnormal growth of both benign and cancerous tumors and cysts in many parts of the body.
    • Cause: genetic
    • Diagnosis & Symptoms
      • Ataxia
      • Endolymphatic sac tumors
      • Hemangioblastomas/retinal angiomas
      • Pheochromocytomas
      • Renal cell carcinoma
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Treatment

COMORBIDITIES

These conditions may be present in some cancer patients, may influence the treatments chosen, and may influence the effectiveness of treatment. These conditions, of course, are also present in some people who have no cancer. They are generally considered comorbidities rather than direct causes of cancer. (They are also co-morbidities for other potentially lethal illnesses, such as COVID -19.) more frequently than not, cancer is treated separately from these conditions, but some doctors and researchers suggest that cancer is not a single-issue disease for a large number of cancer patients and comorbidities should be considered in determining cancer treatment.

  • cardiovascular illness (e.g. arrhythmia, atherosclerosis, congestive heart failure, heart attack, heart failure, heart valve problems, stroke)
  • diabetes
  • mental health illness
  • metabolic illness
  • musculo-skeletal conditions
  • obesity

CONDITIONS RELATED TO CANCER

The links below, which we will be expanding and refreshing, contain information about conditions that are not cancer but are either caused by cancer, are thought to cause cancer, or often co-exist with cancer, creating complications in prescribing medicine.

DIAGNOSIS AND TESTING

How cancer is diagnosed depends upon the type of cancer. Here are the common tests:

  • Biopsies
  • Blood tests and cancer
  • Colonoscopy (colon cancer; colorectal cancer)
  • Endoscopy (esophageal cancer)
  • Genetic Testing
  • Mammogram (breast cancer)
  • Scans of body organs

DIET

  • Chemotherapy. Nutrition guidance
  • Hypercalcemia. Nutrition guidance

DOCTORS WHO TREAT CANCER

The primary doctors who treat cancer are oncologists. There are a few types of oncologists:

  • Dermatological oncologist
  • Medical oncologist
  • Radiation oncologist
  • Surgical oncologist

Other doctors can be involved with the treatment of cancer:

  • Dermatologist
  • Holistic Doctor.
  • Mohs Surgeon
  • Nurse Practitioner
  • Pathologist
  • Physician Assistant
  • Plastic Surgeon
  • Primary Care Physician
  • Radiologist

END OF LIFE CANCER-RELATED CONSIDERATIONS

This list is definitely not comprehensive, likely not able to be comprehensive. However, if there is an end-of-life topic readers would like to see included, please contact us at info@msipress.com. Many of these topics will be discussed, over time, in Cancer Diary on the MSI Press blog, so check there for a more personal discussion of them. A caveat here: we are not lawyers; we cannot give legal advice and do not mean anything here to be other than a starting point. Legal matters should be discussed with an attorney who knows your situation, your state, your family, and your desires.

  • Advanced Health Directive
  • Beds
    • Bariatric Bed
    • Hospice Bed
  • Bleeding & Blood Thinners
  • Burial
  • Chair Lifts
    • Medicare will not pay for chair lifts.
    • Most insurances will not pay for chair lifts.
    • Chair lift companies will usually help with financing.
    • Costs can range from $10k-$20K, depending on how much design specialization is needed.
    • It can take from a few days to as much as six weeks to get a chair lift put in, depending upon whether a standard model can be used or a special order is needed.
    • Chair lifts generally top out at 300-400 pounds.
    • One of the sturdiest makes is Bruno (they make the chair, not the lift); it is considered the gold standard by a number of companies and specialists in the field.
    • Lift companies
  • DNR Orders
    • Do not resuscitate refers to the request not to provide extraordinary care if you stop breathing.
    • DNR (or, alternatively, preference for full treatment) is part of any advanced health directive, which every cancer patient should have.
    • Some hospices will insist on a signed DNR form in order to accept a patient and sometimes will imply that this is true for all hospices; it is not; many hospices allow resuscitation, full treatment, and even emergency services (ambulance, ER) although emergency services will temporarily remove the patient from hospice; search for a hospice that will work with you and your preferences and not put limitations on your options.
  • Donation
    • Organ Donation
    • Whole Body Donation
  • Durable Medical Equipment (DME)
    • This is medical equipment used in the home to provide a better quality of life for a patient of any illness/disability, including cancer.
    • Most insurances will pay for DME although generally permission is needed in advance of arranging for rental or purchase.
    • Chair lifts are not considered DME, and most insurances will not pay for chair lifts; check with your insurance company before making a decision about putting in a chair lift (sometimes, there is no choice, but you may have to pay out of pocket for this very large expense)
  •  Hospice
    • Caregiving
      • The hospice is not the caregiver; a relative or someone hired for that purpose is.
      • The hospice provides aides who generally come every other day or so and medical advice from its nursing staff who visit periodically.
      • In an emergency, a good hospice will send a nurse or aide though sometimes calling an ambulance is the better course of action (admission to ER or the hospital will remove the patient temporarily from hospice).
    • DNR Orders (relative to hospice)
      • Some hospices require a Do Not Resuscitate order in order to accept a patient.
      • Many, if not most, hospices do not require a DNR; however, if a patient is subsequently provided full treatment at a hospital, the patient may be removed permanently or temporarily from hospice care.
    • Home Hospice – takes place at the patient’s home.
    • In-Patient Hospice – takes place in a
    • Intake
    • Medicines
    • Oxygen
    • Transfer of Care
    • Wound Care
    • Hospice selection
      • Hospitals have lists of hospices; they will not usually make a recommendation.
      • YELP! has ratings of hospices.
      • Funeral homes, priests & pastors, and medical professionals generally know which are the good/best hospices in the local area.
  • Hoyer Lift
    • What it is: a tall pole with a moving base and patient sling for lifting patients who cannot stand
    • What kinds are there?
      • power lift (highly recommended for large patients with small caregivers)
      • manual (less expensive and works find for average-sized patients and average-sized caregivers)
      • ceiling (uses a track system, generally for bedroom or bathroom)
      • sit to stand (for patients who can sit up)
    • Where can I buy one? Note: This is just a list of places that sell Hoyer lifts; CCC is not recommending any one source in particular. Generally, if a person is on hospice, the hospice will provide a lift (if possible, with a large-sized patient, as for the power lift)
  • Life Insurance
  • Supplies
  • Trust/Family Trust
  • Will

ORGANIZATIONS

The organizations below have a mission related to one or more of the following: cancer research, information, resource identification, charity/fundraising, and/or general support functions.

Check this bing page to review the purpose and activity of most of these organizations (will save clicking time).

This list is not complete; if you are part of an organization that assists cancer victims in some way that is not listed here, please send us a note at info@msipress.com. We are interested in local organizations as well as national and international ones — as well as updated information on websites and online contacts.

PATIENT AND FAMILY SUPPORT

Too often, modern medicine, especially in the USA, where MSI Press LLC is located, fails to look at the larger picture, and families become highly stressed out. They need help and do not know where to turn. We do not have all the answers or even a lot of the answers, but we do have some suggestions.

  • Decision-making
  • Emotional Support
    • Dying
    • Grief
    • Stress
  • Financial Support
    • Out-of-pocket costs
      • Direct
      • Indirect
    • Insurance
      • Medicare
      • State Insurance (e.g., Medi-Cal in California)
      • Private Insurance
      • No insurance
  • Online resources/outreach
    • For Pete’s Sake Cancer Respite Foundation (includes the following help):
      • Travel vacation respites
      • Staycation respites
      • Information
      • Person-to-person connection via Facebook for sharing experiences and knowledge
    • My Life Line (includes the following help and more):
      • Discussion boards to connect with others
      • Interactive blogs
      • Private community website
      • Cancer Support Helpline Live Chat and Phone (888-793-9355) for help coming with distress, finances, housing resources, treatment planning, and more
    • This Is Living with Cancer (includes the following help and more):
      • Information about genetic and biomarker testing
      • Self-care tips for caregivers
      • Clinical trial process
      • Sources of reliable medical information
      • Blog (listed among blogs below)
    • Have you used other online resources? Please share with us at info@msipress.com.
  • Physical Support
    • Caregiving
    • Housecleaning
    • Transportation
  • Spiritual Support

PREVENTION

OTHER INFORMATION

ANIMAL CANCER

Cats, dogs, and other animals can get cancer, too. They are often treated in ways similar to humans with cancer. Here are some of the common animal cancers, along with their treatment.

  • Mammary Cancer
  • Lymphoma
  • Sarcoma
    • Injection site sarcoma
  • Skin Cancer

ASK AN EXPERT

The following websites will answer your questions online; some are pro format but most are individualized. If one does not work, try another.

RESOURCES: AN ANNOTATED SHORT LIST OF HIGHLY RECOMMENDED BOOKS FOR CANCER PATIENTS AND THEIR SUPPORTERS

The biggest fear of watching someone die is fear of the unknown; not knowing what dying will be like or when death will actually occur. The booklet “Gone From My Sight” explains in a simple, gentle yet direct manner the process of dying from disease. Dying from disease is not like it is portrayed in the movies. Yet movies, not life, have become our role models. Death from disease is not happenstance. It doesn’t just occur; there is a process. People die in stages of months, weeks, days and hours. Gone From My Sight is literature used to reduce fear and uncertainty; to neutralize the fear associated with dying. It is designed to help people understand dying, their own or someone else’s.

We can be as much at a loss when our pet is dying, as we are when a person is dying, yet we often lack access to the support and guidance we need to navigate the loss of a beloved pet. This booklet seeks to guide and support pet owners navigating the challenges of a pet’s final illness, approaching death, and the grief that follows. Like humans, animals go through a dying process –not eating, sleeping more, withdrawing. This booklet helps readers recognize signs of their pet’s dying process as well as navigate end of life decisions such as euthanasia. Unlike humans, with our pets we have the option of euthanasia and the responsibility of determining when to end suffering and conclude treatment. Then there are burial decisions to consider and, finally, grief. For many of us, our animals are family, an important part of our lives. They offer unconditional love, joy, humor and comfort, and we grieve for them deeply when they die. We are often surprised by the depth of grief that we feel when a beloved pet dies – “it’s only an animal after all, what’s the big deal?” But grief for our animals is a “big deal.” This booklet helps pet owners understand and live with their grief. “My hope is that A Place in My Heart will bring direction and comfort to those facing the death and grief of a much loved pet.”

RESOURCES: BLOGS

Cancer Diary

These are a set of blog posts, posted each Monday, on topics related to cancer — a reflection of something current, about someone with cancer, about something related to cancer, or a reaction of someone to cancer. Unlike the CCC, which is essentially an information site, the Cancer Diary blog posts are meant to share personal experience, emotions, information, and support. Begun on August 16, 2021, the day that Carl Leaver died from Cancer of Unknown Primary, they continue on a weekly basis. Posts on this blog, while most frequently generic, are the only ones to touch on Cancer of Unknown Primary, a very aggressive and deadly form of cancer that is nearly impossible to treat (so far).

August 16, 2021. In Memoriam: Carl Don Leaver (introduction to Cancer Diary blog posts)
August 23. 2021. Overview of Carl’s Cancer Compendium
August 30, 2021. The Stages of Cancer
September 6, 2021
. Help in Understanding the Terms Used by Oncologists
September 13, 2021. MSI Publications Related to Cancer and Life-Threatening Illness and Dying
September 20, 2021. Cats with Cancer
September 27, 2021. Caregiver Survival
October 4, 2021. The Stages of Dying Guide We Used to Accompany Carl in His Dying
October 11, 2021. Some Notes about Grief
October 18, 2021. Colin Powell Died Today
October 25, 2021. Top Fifteen Cancer Centers in the US
November 1, 2021. A Celebration of Life
November 8, 2021. The Frustrations and Obfuscations of Cancer of Unknown Primary (Occult Cancer)
November 15, 2021. Focus on Living? Focus on Dying? An (Almost) Unwinnable Scenario and Two Different Paths Chosen
November 22, 2021.Thank You, Hoyer Lift

From time to time, other posts about cancer have appeared and continue to appear on the blog, including excerpts from books.

Similar types of discussions and sharing of personal experience can also be found on Quora.

Cancer Compass

This is not a blog per se but rather an informational message board seeking to individualize and personalize information and care.

Cancer Support Community Blog

This blog addresses specific cancers on a personal level, includes posts on multiple facets of cancer, and is very easily searched. (One cancer that it does not address is cancer of unknown primary, which prompted the CCC and Cancer Diary blog (though both these MSI Press efforts have taken a broader approach than just narrowly focusing on CUP.)

The Cancer Support Community offer more than juts a blog. It offers both general information and advocacy and specific information and assistance for caregivers, patients, and loved ones. It includes three institutes that make up its three pillars of its raison d’etre:

  • policy
  • psychosocial care
  • research & training

Living with Cancer of Unknown Primary blog

Blog posts also make forays into other kinds of cancer.

Lists of blogs

Some websites have searched and vetted blog sites. They provide links to those blogs they consider the best. This is a good place to start, whether you are looking for general cancer information or information about a specific cancer, typically encapsulated in real-life experiences.

Healthline has a list of the best cancer blogs of 2021, with links.

The Patient Story contains links to the top ten cancer blogs for breast, kidney, leukemia, lung, and lymphoma cancers.

Financial resources & support

Mend Together offers gifts and financial help through its gift & cash registry

Helplines

Cancer Support Community (Gilda’s Club) staffs a helpline at 888-793-9355 9am – 9 pm ET Monday-Friday and 9am – 5pm Saturday & Sunday.

FUTURE PLANS

CCC Helpline (xxx-xxx-CCCH) (xxx-xxx-1113)

This is a service that we aim to set up in the future when/if we are able to raise the money to support and fund it and find sufficient volunteers to service it. The plan is to make the CCC come “alive” by having real people 24/7 to be able to answer nitty-gritty questions or immediately search for sources of help as patients and their relatives and friends encounter them and cannot find what they need. (Not meant as medical advice, but referral to such as well as to other resource support; a place to turn, especially when initially shocked by a diagnosis or later thwarted by an obstacle.)

Person-to-person animal cancer connect (P2P ACC)

This is a service that we aim to set up some time in the future where individuals new to pet cancer are able to connect with those who have navigated cancer for some time. We hope to have some vets join us, as well. If you would like to be added to a roster for when we are able to set this up, please indicate this in a note to us at info@msipress.com.

Pet Owner Support: Pet cancer helpline

Just like there are helplines to assist human cancer patients, animal owners need the specialist-to-person help these lines provide, too. We will continue to seek out and even set up such lines as this site grows. If you have suggestions, know someone who can help, or could help with a helpline yourself, please contact us at info@msipress.com.

 

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Carl’s Cancer Compendium does not support or recommend any particular treatment or approach to cancer or any decision-making factor; our purpose is to gather the information available on the Internet, some of it difficult to find, remove the clear chaff from the apparent wheat, and present a collection of informative sites that would take hours of searching for a patient, relative, or friend to find.

If you find a broken link on this page, please inform us at info@msipress.com.