CARL’S CANCER COMPENDIUM
a starting point for all things cancer

hope for the best
plan for the worst
expect the typical

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 to funnel those with questions in search of answers to credible websites that provide reliable answers.

For immediate interpersonal responses, we recommend:

      • Cancer Support Community‘s helpline, 1-888-793-9355, or email, help@cancersupportcommunity.org.
      • Leal Health provides cancer patients and their families a direct connection to treatment options. Wish that had been available to us. For others to benefit from this free networking service, word needs to spread. Please share the link with cancer patients and those recently diagnosed with cancer. The website also includes a blog and access to webinars.
      • Caring Bridge helps build websites to keep family and others in touch, and provides some great informational resources that help, beginning with the day after diagnosis.
      • Other, more specific helplines and available support of various types are listed below.

 

When Carl Leaver, the co-owner of MSI Press LLC, lay dying, his family spent valuable time searching out answers to his condition and needs that they would have preferred to have spent with him. We intend 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.

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 fleshed out.

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 (ensure that they are medically respected sites). Note also that if a subtopic is not bolded, we are still working on it (even if there is a partial listing already). 

YOU OR A LOVED ONE HAS JUST RECEIVED A DIAGNOSIS OF ADVANCED STAGE 4 CANCER…NOW WHAT?

If your cancer diagnosis comes at Stage 1, 2, 3, or pre-cancer (stage 0), you will have more options than if the cancer is not discovered until the final stage. Earlier stages can often be cured or go into remission. Some of the items below are useful to consider at any stage or even if you do not have any life-threatening situation right now.

If you are like Carl and your diagnosis has come at the advanced stage 4 level, meaning that it is incurable, and especially if it is an aggressive cancer, there is much to do quickly — even if you do not feel like it. This list of Things to Consider When Diagnosed with Stage 4 Cancer, which includes information and links for family, financial, legal, pet, psychological, and spiritual considerations, may help get you started.

You may not realize it immediately (but will soon), if you are a caregiver, you have taken on a new life, very different from what you have been living to date. There are important Caregiver Things to Considerx that can be life easier (or, if not considered, harder). I assumed that caregiving would not be all that complicated, but it was way more complicated and demanding than ever I thought or could have predicted, including medical needs and understandings, information obtaining and sharing, interpreting and even intervening in instances of brain fog, emotional experiences of self and patient, self-care including sufficient sleep (that may be the most difficult and most important part), recriminations and remorse, relationships of all sorts, dealing with the community on behalf of the patient, advocacy, and much more.

Given the life-changing nature of this diagnosis, there is support beyond your cancer-care medical team you should probably enlist (at least, you will be more comfortable if you do) that you may not be routinely using. The list of Things to Consider When Diagnosed with Stage 4 Cancer goes into detail, with links, on most of these.

  • attorney: There are so many quirks to the law, (each state differs so online advice and forms can be iffy), and so many different kinds of paperwork needed for end-of-life and after-life actions that if you want your decisions to be realized, good legal help becomes invaluable,
  • live-in caregiver: While your spouse or other loved one may be the obvious choice of caregiver and will indeed become your caregiver, no one person can handle the 24/7 needs of a cancer patient effectively or without a great toll on his/her own physical and mental health. Vetted caregivers can be found on care.com or perhaps you have friends who have had live-in caregivers. You may think you cannot afford one, but sometimes barter arrangements can be made to reduce the cost. Or, if you have family who can come, stay for a while, and help, that can serve the same purpose and even be better company for you.
  • financial advisor: If you have a sufficient amount of wealth and care about what happens to it (after all, you cannot take it with you), a financial advisor can provide options that should work for you. If you will die intestate or with no real wealth, then your attorney can handle the few papers that will be needed, such as will or family trust.
  • counselor: For yourself and for your loved one who is serving as a caregiver, together or individually, there are existential questions and an incredible load of new emotions that you will have to navigate. Few can do it well alone. Consult a psychologist, enlist a priest/pastor/spiritual advisor, or seek support from both psychological and spiritual supporters. And do not forget that friends and relatives, while not counselors (even those who are professional counselors would have difficulty dual-hatting), can provide immense amounts of emotional support. (Some can also increase your stress; this is the time to avoid those.)

To facilitate coping with the chaos that almost immediately devolves on a family when a family member received a cancer diagnosis, the caregiver’s guide to cancer website has prepared a free, downloadable self-care planner.

 

WHAT IS CANCER?

Cancer is considered to be a genetic disease. Changes to genes, caused by error in cell division, DNA damage (from tobacco, sun, etc.), and/or heritage (such cases can be revealed by genetic markers, where known), result in the uncontrolled growth and division of abnormal cells.

Normally, when cells get old or damaged, they die, and new cells take their place. In cancer, the cell division process goes off-track (anywhere in the body) and producwhilees abnormal new cells that spread and form into tumors (lumps of tissue). These tumors can be benign (not cancerous) or malignant (cancerous).

  • Benign tumors are well differentiated, have typical cell structure, do not spread/metastasize, grow slowly and gradually, and do not exhibit mitosis (replication into two cells); they are non-cancerous, but they can kill by obstructing organ function.
  • Malignant tumors are poorly differentiated, have abnormal cell structure, spread to other organs (metastasize), grow rapidly and erratically, and exhibit abundant mitosis; they are cancerous and, while often possible to cure at early stages, at later stages cause death.

At younger ages, the body can sometimes successfully handle DNA changes before they turn into cancer; as the body becomes older, the body’s attempts are generally less successful. The U.S. government’s National Cancer Institute explains this process in detail that is generally easy to understand.

 

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:

  • advocacy
  • cancer causes
  • cancer centers
  • cancer stages
  • cancer symptoms
  • cancer treatments
  • cancer types
  • communication
  • comorbidities
  • conditions related to cancer
  • COVID-19 and cancer
  • diagnosis and testing
  • diet
  • doctors who treat cancer
  • drugs commonly used to treat cancer
  • end of life cancer-related considerations
  • organizations dedicated to cancer research, information, resource identification, and support functions
  • patient and family support
  • prevention
  • statistics

The other information section that follows that deals with

  • animal cancer
  • fundraising efforts
  • resources
    • annotated list of highly recommended book resources, with links
    • ask an expert (and get an answer)
    • blogs
    • podcasts
    • financial resources & support
    • helplines (and hotlines)
  • Worldwide websites in support of cancer patients, familes, care, and research
  • future website plans.

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

SPECIFIC INFORMATION

ADVOCACY

The American Cancer Society maintains a Cancer Action Network that seeks to influence public policy and make cancer a national priority.

Cancer.Net provides for a number of ways in which individuals can become cancer advocates.

Esophageal Cancer Action Network started as a fundraising effort and offers information and more to esophageal cancer patients

The Montana State Oncology Society posts a list of patient advocacy organizations, as well as groups that advance research and education.

The National Cancer Comprehensive Network has advocacy groups that include patient advocacy and support. They also do public outreach and education about cancer topics.

The National Coalition for Cancer Survivorship has a cancer advocacy team.

Oncology Nurse Advisor focuses its advocacy on disparate treatment of ethnic groups (especially Hispanic) and assistance to nurses in the Indian Health Service.

 

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
  • gene mutation (associated with most cancers)
  • 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, processed meats, low fiber, low fruit)

 

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.

There are two systems for classifying non-blood cancers: ACJJ and SEER. The website of Cancer Treatment Centers of America breaks these stages down into comprehensive detail, including their treatment, and medically checked guidance.

AJCC (American Joint Committee on Cancer), the better-known system uses four stages.These stages have further breakdowns. The American Cancer Society maintains a  very comprehensive description of these stages and their substages.

  • Stage 1 – small tumor or cancer and localized to one area
  • Stage 2 – large tumor or cancer that has grown into nearby tissue
  • Stage 3 – locally advanced cancer, determined by size, multiple tumors, or spread
  • Stage 4 – metastacized cancer that has spread to distance organs and tissue

SEER (Surveillance, Epidemiology, and End Results) uses broader categories, but they do parallel the AJCC system. SEER breaks the stages into three:

  • Local: There is no sign that cancer has spread outside the original site.
  • Regional: Cancer has grown outside the original site tissue and has spread to nearby tissue or structures.
  • Distant: Cancer has spread to distant regions in the body such as other organs that are not nearby.

Blood cancers, such as leukemia or myelodysplasia, behave differently and are staged in different ways. The National Cancer Institute site explains the stages of blood cancers 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 Grades
    • Low grade. Grades 1 and 2 are termed low grade because their cells are well-differentiated, exhibit less aggressive tendencies, and have a better prognosis. Grade 1 is associated with long-term survival and typically found in children.
    • High grade. Cells and tissue that look abnormal under a microscope. High-grade cancer cells tend to grow and spread more quickly than low-grade cancer cells. Grade 3 and 4 gliomas are considered high-grade: their cells are undifferentiated and highly malignant and have a worse prognosis.
  • 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;” here are some articles and websites that discuss some fundings about fungus-cancer relationships:
    • 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
    • many different mixtures and combinations
    • if not listed here, Google it or ask the doctor for more explanation–do not take drugs that you do not completely understan
    • depending upon the drug mixture, can have unpleasant side effects:
      • hair loss (but not with all chemotherapy)
      • nausea
      • neuropathy
  • Clinical Trials
    • may provide access to treatments and drugs not yet in (wide) use (note: control groups are not used in clinical trials so ALL participants will get treatment)
    • will almost certainly provide you with more personalized attention
    • may or may not be available in your area
    • may or may not be available for your particular cancer
    • most oncologists will be able to track down relevant clinical trials; in addition, here are resources for tracking down some on your own (check as well universities and well-known cancer treatment centers, such as the Mayo Clinic):
    • clinical trials take time while some cancers, such as cancer of unknown primary and pancreatic cancer have prognoses of very short remaining life spans, the pragmatism of becoming involved in a clinical trial for which may need to be balanced against other options, but the dire prognoses of which may lead to the desirability of enrollment in a clinical trial
    • where current clinical trials are known for specific cancers, they are listed in the information pages (below) for those cancers
  • Gene Therapy
  • Histotripsy (emerging treatment, using sound waves in higher intensity than ultrasound)
  • Hormone Therapy
  • Immunotherapy
  • Radiation
  • Surgery
  • Palliative chemotherapy (when a cancer is incurable and side effects are acceptable)
    • pros (intent)
      • shrink the cancer
      • reduce the symptoms (e.g., pain)
      • improve quality of life
      • prolong life
    • cons
      • side effects
      • “end of life” chemotherapy, i.e. grasping at straws not likely to exhibit and of the pros listed above
      • minimal benefit
  • Palliative care
    • interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering
    • early identification and impeccable assessment and treatment of pain
    • treatment of physical, psychosocial, and spiritual problems
    • WHO recommends early application of palliative care
  • Vitamin CK3 treatment
  • 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 prognosis.

 

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. A click on the link will lead to a document with references that provide more colloquial descriptions and even interactive information and assistance. Within these documents, CCC attempts to consolidate useful websites and articles, sort of like a restaurant menu that also links to recipes!

Sometimes, terms used in the linked pages or on this website can be elusive, redundant, or acting to define a term by using the term. The links within the pages should clarify specifics and terms of the cancer; if they do not, please refer to the CCC Dictionary of Terms Related to Cancer v 11 10 21, described above.

Please note that we are working on these pages; some are more complete than others. If we have not yet fleshed out a particular type of cancer important to you and the general references above are insufficient for you, let us know. We will move your cancer type to top priority and get that information for you. [Those still listed below will be moved soon to separate linked documents for ease of reading.] If you have information to add or see a missing cancer type, please email us at info@msipress.com.

Click on the link below to retrieve in-depth information (where available and recorded) about each cancer type listed,

  • Head & Neck Cancer (no current information)
  • Kidney cancer (see renal cancer)
  • Laryngeal cancer
    • Definition: Cancer of the larynx (voice box)
    • Cause
      • alcohol consumption
    • Clinical trials
    • Diagnosis & Symptoms
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Leukemia
  • Liver Cancer
    • Definition: A condition results from development of tumors in the liver cells.
      • When liver cancer is the primary, the information in this section applies.
      • When liver cancer is the secondary cancer, check HERE for specific information.
    • Cause
      • Exact cause unknown
      •  DNA mutation
    • Clinical trials
    • Diagnosis
      • Biopsy
      • Genetic marker: microRNA
    • Life Expectancy
      • 5 year survival rate
        • overall: 17%
        • diagnosed at Stage 4: 7%
      • 6 months to 1 year after diagnosis, if metastasized
    • References & Research
    • Risks
      • Excessive alcohol consumption
      • Hepatits
      • Inherited liver disease
      • Yerba mate tea
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • 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
    •  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%)
    • Clinical trials
    • Diagnosis
      • biopsy/determine whether cells are cancerous
      • CT Scan/determine size and mass of tumor
      • MRI (magent resonance imaging)/severity and spread of cancer cells
      • PET scan (positron emission tomography/looks at lung function and lung tissue
      • sputum cytology/look for cancer cells
      • X-ray/determine if a tumor is present
      • Common tests & procedures
    • 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
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Symptoms
      • difficulty breathing
      • shortness of breath
      • facial edema
      • constant coughing
      • wheezing
      • coughing up blood
      • chest, back, and/or shoulder pain
      • hoarseness
      • headache
      • weight loss
      • high blood pressure
      • high blood sugar
    • Treatment
      • chemotherapy
      • immunotherapy: AFM24
      • 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
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • 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
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Myeloma
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Neuroendocrine tumor
    • Definition: A rare tumor of the neuroendocrine system, the system in the body that produces hormones; can be cancerous or non-cancerous. The tumor usually grows in the bowels or appendix, but it can also be found in the stomach, pancreas, lung, breast, kidney, ovaries or testicles. It tends to grow very slowly. Neuroendocrine tumors are sometimes referred to as carcinoid tumors, particularly when they affect the small bowel, large bowel or appendix.
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
  • Occult Cancer (see Cancer of Unknown Primary)
  • Oral Cancer
    • Definition. Two types:
      • Mouth Cancer
      • Throat Cancer
    • Cause
      • Alcohol consumption
      • Sun exposure
      • Smoking & tobacco
      • Some strains of human papillomavirus (increased by sexual practices)
      • Weakened immune system
    • Diagnosis & Symptoms
      • Occurs more often in men
      • Occurs more often over the age of 40
      • Non-healing ulcers/sores
      • Swallowing pain
      • Loose teeth
      • Hoarse voice
      • Tongue pain
      • Poorly fitting dentures
      • Swelling
      • Red or white patches on the tongue or in the mouth
      • Lump in throat
      • Jaw pain
      • Neck pain
    • Life expectancy
      • 60% 5-year survival
      • Significantly lower for Black men and women
    • Reduction of risk
      • HPV vaccination
      • Limit sun exposure
      • Do not smoke
      • Moderate consumption of alcohol
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
      • Chemotherapy
      • Radiation
      • Surgery
  • Ovarian Cancer
    • Definition: Cancer that arises from cells of the ovaries, the paired reproductive organs in women
      • Epithelial (about 90% of ovarian cancers); tumors in tissue outside ovaries
      • Stromal: tumors in hormone-producing cells
      • Germ cell: tumors in egg-producing cells
    • Causes
      • Acquired gene mutation
      • Inherited gene mutation
    • Clinical trials
    • Diagnosis
      • Physical exam
      • Blood test
      • CT scan
      • Ultrasound
      • Biopsy
      • Endometriosis might presage ovarian cancer: shared genetic markers
    • Life expectancy
      • Diagnosed at stage 1: 92% survive 5 years
      • Diagnosed at stage 2/3: 73% survive 5 years
      • Diagnosed at stage 4: 29% survive 5 years
    • Real-life Stories
    • Reduction of risk
      • Avoid talcum powder (research suggests a connection)
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Symptoms:
      • Early stages of cancer are mostly symptomless, but some women experience some of the following:
        • Bloating
        • Constipation
        • Change in bladder functioning
        • Persistent pain in the abdomen, pelvis, or back
      • Symptoms in advanced stages
        • Abdominal enlargement or swelling
        • Abdominal fullness and pain
        • Pain in lower abdomen
        • Feeling full after eating very little
        • Tiredness
        • Changes in bowel or bladder habits
        • Clothes not fitting well
        • Swelling of legs
        • Shortness of breath
        • Bleeding from vagina
        • Abnormal menstrual cycles
        • Weight loss or gain
        • Unexplained back pain
    • Treatment
      •  Chemotherapy
      • Surgery
        • Removal of visible masses
        • Removal of ovaries
        • Removal of ovaries plus uturus, lymph nodes, and other organs
  • Pancreatic Cancer
  • Peritoneal Cancer
    • Definition: Cancer arising in the sheet of tissue that covers the inner surface of the abdomen and pelvis, including the organs, such as bowel, bladder, stomach and liver.
    • Cause: unknown
    • Clinical trials
    • Diagnosis & Symptoms
      • appetite loss
      • weight gain
      • feeling unwell
      • pain in the stomach area.
    • Life Expectancy
    • Reduction of risk
    • References & research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
      • chemotherapy
      • surgery
  • Pharyngeal Cancer
    • Definition: Includes cancer of the nasopharynx (the upper part of the throat behind the nose), the oropharynx (the middle part of the pharynx), and the hypopharynx (the bottom part of the pharynx).
    • Cause
      • alcohol consumption
    • Clinical trials
    • Diagnosis & Symptoms
      •  painless lump in the upper neck
      • swelling of the neck
      • persistent headaches
      • nasal congestion (a blocked nose)
      • facial pain
      • nosebleeds.
    • Life expectancy
      • 5-year survival rate: 57%
    • Reduction of risk
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • 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
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Primary Biliary Cholangitis (see bile duct cancer)
  • 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/risks:
      • Family history of prostate cancer
      • Genetic mutation
      • Diet
        • red meat
        • Possible: Heterocyclic amines (HCAs) (e.g., charred meat)
        • high-fat dairy products
        • low in fruits and vegetables
      • Obesity
      • inflammation of the prostate
      • Race/ethnicity (Afro-American, Afro-Caribbean)
      • Age (over 65)
    • Diagnosis
      • Genetic testing
      • Symptoms
        • blood in urine
        • difficulty starting to urinate
        • incomplete voiding of the bladder
        • blood in semen
        • painful ejaculation
        • erective dysfunction
        • pain in back or pelvic area
        • fatigue
    • Life Expectancy
      • 5-year survival rate is nearly 100%
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
      • Proton therapy
      • Radiation
  • Rectal Cancer (see also colorectal cancer)
    • Definition: Cancer which begins in the rectum, the lower end of the large intestine. It causes diarrhea or constipation, blood in stool, abdominal pain, weight loss, and fatigue.
    • Cause: errors or mutations in the DNA of rectal cells
    • Diagnosis
      • Complete Blood Count (CSC) – check for anemia
      • CT Scan – size of tumor and amount of spread
      • X-ray – to determine if spread to lungs
      • Colonoscopy – determine rectal abnormalities
      • Biopsy
      • Tumor marker test – tests for gene mutations
      • MRI  – determine stage of cancer
    • Life Expectancy (5-year survival)
      • Localized: 90 percent.
      • Regional (small spread): 71 percent
      • Distant (metastatic) 14 percent
    • Reduction of Risk
      • Maintain healthy diet
      • Exercise regularly
      • Avoid smoking & drinking alcohol
      • Lessen consumption of red meats
    • Risk Factors
      • Advancing age
      • Family history
      • Certain genetic syndromes
      • Inflammatory bowel syndrome or other conditions like polyps
      • Diet rich in foods from animal sources, especially red meat
      • Diabetes
      • Excessive alcohol consumption
      • Smoking
      • Obesity
      • Sedentary lifestyle
    • Reference & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Symptoms
      • Bowel obstruction
      • Blood in stool
      • Change in bowel habits
      • Narrow stool
      • Feeling that cannot empty completely
      • Abdominal pain
      • A secondary cancer caused by rectal cancer
      • Fatigue
      • Weakness
      • Unexplained weight loss
    • Treatment
      • Chemotherapy
      • Radiation
      • Surgery
  • Renal Cancer (Renal Cell Carcinoma)
    • Definition: A disease caused by development of cancerous (malignant) cells in the kidney.
    • Cause
    • Diagnosis & Symptoms
      • blood in urine
      • lump in the abdomen
      • low back pain
      • sudden weight loss
      • extreme fatigue
      • fever
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Retinoblastoma
    • Definition
    • Cause
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
    • References & Reseacr
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Rhabdoid Tumor
    • Definition: An aggressive, pediatric, soft-tissue sarcoma that is made up of many large cells. Some rhabdoid tumors can grow in the brain, and these are called atypical teratoid rhabdoid tumors (ATRT). Most often, they grow in the kidneys and other soft tissues, like the muscles attached to the bones of the skeleton; generally in children
    • Cause:
      • unknown
      • gene mutation usually is present in the SMARCB1 (also called INI1, SNF5, and BAF47) gene
    • Diagnosis & Symptoms
      • Blood in urine
      • Brain lesions
      • Difficulty urinating
      • Fever
      • Fussiness
      • Lump in abdomen
    • Life expectancy
      • Depends upon tumor grade (amount of abnormality), age, tolerance of treatment, and comorbidities
      • Generally, no more than a few years
      • 5-year survival rate: 32% (according to some statistics)
    • Reduction of risk
      • Avoid extensive radiation (x-rays and gamma rays) [normally, a good practice, anyway]
      • No known life-style risk factors
      • No known environmental risk factor
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
      • St. Jude Children’s Research Hospital
    • Treatment
      • Chemotherapy
      • Radiation (over age of 6 months)
      • Stem cell transplantation
      • Surgery
  • 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
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Skin Cancer (see also melanoma, which is a specific type of skin cancer)
    • Definition: A condition that causes abnormal growth of skin cells.
    • Cause
      • ultraviolet exposure
      • Gene (DNA) mutations
        • acquired gene mutations
        • inherited gene mutations
      • immunosuppression (e.g., HIV/AIDS)
    • Diagnosis
    • Life expectancy
    • Personal stories:
    • Reduction of risk
      • Cover fair skin in the sun (fair skin is a risk by itself)
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Symptoms
      • Redness
      • Growths – flat & discollored, bumpy
      • Bleeding or scabbing sores
    • Treatment
  • Stomach Cancer (Gastric Cancer)
    • Definition: A cancer that develops from the inner lining of the stomach.
    • Cause
    • Clinical trials
    • Diagnosis & Symptoms
      • bloating
      • stomach pain
      • difficulty in swallowing
      • nausea
      • vomiting
      • fatigue
      • weight loss
    • Life expectancy
    • Reduction of risk
    • References & Research
    • Risks
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Testicular cancer
  • Thyroid cancer
    • Definition: A cancer that develops in the cells of thyroid gland, a butterfly-shaped gland located just below adam’s apple in the neck. It causes difficulty swallowing hoarseness, lump on the neck, and swollen lymph nodes in the neck. Types include
    • Cause
      • Family history
      • Constant exposure to radiation as in case of employees working in nuclear power plants
      • Radiation treatment for cancers
      • Diet low in iodine
      • Gender: Women are at increased risk of developing thyroid cancer
    • Diagnosis
      • Thyroid function tests (TFTs): Blood tests to determine levels of thyroid hormones.
      • Ultrasound: To check the size and number of nodules, determine if it is solid or fluid-filled; Also check if any nearby lymph nodes are enlarged.
      • CT scan: To assess the spread of cancer to nearby and distant areas.
      • Thyroid biopsy: A small sample of the thyroid tissue is sent for microscopic examination.
      • Genetic test: To check for genes that increase your chances of thyroid cancer.
    • Life expectancy
    • Living with It
    • Reduction of risk
      • Avoid exposure to radiation
      • Get genetic testing in thyroid cancer runs in the family
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Symptoms
      • Nodule in thyroid gland (usually presents first)
      • Hoarse voice
      • Neck pain, accompanied by ear pain in some cases
      • Trouble swallowing
      • Swollen lymph nodes in the Neck
      • Difficulty breathing or Constant wheezing
      • Frequent cough, not related to cold
      • Hot flashes
    • Treatment & Complications of Treatment
      • Chemotherapy
      • Hyperthermia
      •  Surgery
        • Can cause injury to the voice box
        • Reduced calcium levels in the body in case the parathyroid gland is accidentally removed.
      • Thyroid hormone therapy
      • Targeted drug therapy
  • Vaginal cancer
    • Definition
    • Cause
      • Some strains of human papiilomavirus
    • Diagnosis & Symptoms
    • Life expectancy
    • Reduction of risk
      • HPV vaccination
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
  • 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
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Treatment
  • Vulvar Cancer
    • Definition: A cancer that occurs on the outer surface of the female genitals.
    • Cause:
      • DNA mutation
      • Reason for DNA mutation not clear
    • Diagnosis
      • Colposcopy
      • Physical exam
      • Pelvic exam
      • Biopsy
    • Life expectancy
    • :Reduction of risk; pay attention to the following risk factors:
      • Age – risk increases with increase in age, average age of diagnosis is 65
      • Exposure to human papillomavirus
      • Smoking
      • Weakened immune system
      • History of precancerous conditions of the vulva
      • Skin condition such as lichen sclerosus which involve the vulva
    • References & Research
    • Sources of Support
      • See Resources: Financial Resources & Support (near the end of this page)
    • Symptoms
      • Persistent itching
      • Pain and tenderness
      • Bleeding
      • Skin color changes and thickening
      • Lump
      • Ulcer
      • Wart-like bumps
    • Treatment
      • Chemotherapy
      • Radiation
      • Surgery (preferred) – complications of surgery can include
        • Wound infection
        • Sexual dysfunction
        • Edema
        • Thrombosis

COMMUNICATION

A diagnosis of Stage 4 (incurable, terminal) cancer and living with it for whatever time is left (as well as deeply hoping for more time or to be among that 1% that somehow turns the prognosis on its head) can create communication difficulties. Denial or acceptance (or something in between), faith or no faith (or something in between), anger or defeatism (or something in between), the personality and communicative styles of the patient and those who surround him/her create hurdles that can turn into obstacles when coupled with the effects of hypercalcemia, chemo brain, and other biological conditions.

  • communication by the cancer patient
  • communication with the cancer patient
    • Cancer.net recommends taking cues from the patient, showing support without words, and choosing words carefully.
    • Some eloquently presented suggestions by a cancer patient experiencing chemo brain for being able to communication with someone with chemo brain include not reacting to the frustration (i.e. shouting and accusations do not help) but rather finding some helpful ways to manage deteriorating memory (writing things down, giving time and space to process and remember).
  • communication to the cancer patient
  • communication with the caregiver
  • communication with the team

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.

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.

COVID-19 AND CANCER

CCC strongly recommends that anyone who receives a diagnosis of cancer who has not been vaccinated for COVID (or flu, shingles, etc, for that matter) should immediately and urgently seek vaccination. Carl had had his first shot but had to wait another two weeks for his send when the diagnosis came. The oncologist deliberately delayed treatment for three weeks so that Carl could get the vaccination and let it become effective before he began cancer treatment. Fighting cancer is hard enough without other diseases slipping in to compete to kill you.

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
  • Early signs can tip off a doctor to test for cancer

DIET

  • Chemotherapy. Nutrition guidance
  • Some foods naturally help prevent cancer; they can also help fight cancer, but check first with the nutritionist on your cancer-care medical team because chemotherapy or hypercalcemia may preclude eating them (or create the need to eat something else)
  • Some foods have anti-inflammatory properties; they are healthy for many reasons and definitely help for cancer patients experiencing inflammation
  • 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

DRUGS COMMONLY USED TO TREAT CANCER

The following drugs are commonly used to treat cancer. The list is not exhaustive, and any particular drug choice or chemotherapy concoction will depend on the individual patient and the doctor’s assessment of what will work best with least side effects for a particular patient. The list is provided simply as information. Decisions on drugs need to be made by skilled professionals.

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
    • American Cancer Society has an excellent web page devoted to an overview of end-of-life emotions of patients.
  • Financial Support (see Resources: Financial Resources & Support below)
    • Out-of-pocket costs
      • Direct
      • Indirect
    • Insurance
      • Medicare
      • State Insurance (e.g., Medi-Cal in California)
      • Private Insurance
      • No insurance
  • Online resources/outreach
    • Blood and Marrow Transplant Information Network — talk to another patient, get help with insurance inforomation, and more
    • 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 (an online community) 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

The American Cancer Society suggests a number of ways in which individuals can lower the risk of getting cancer:

  • staying healthy
  • getting tested/screened early
  • not using tobacco
  • practicing sun safety
  • HPV vaccination
  • exercising
  • become knowledgeable about cancer

STATISTICS

  • One in three people will get cancer at some time in some form.
  • As of December 2021, there are 16.9M cancer survivors in the USA.

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 (see also national helplines)

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

FUNDRAISING EFFORTS

The following is a partial list of organizations raising money for cancer research, treatment, patient information, and support services. Check out their websites for their mission, purpose, and use of funds.

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.
The author, Barbara Karnes, also maintains a blog with answers to questions that are hard to find elsewhere: Something to Think About: a blog on the end of life.

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.”

Survival of the Caregiver is the result of all the author’s ins and outs, ups and downs of caring for her husband for 20 years when he had Parkinson’s Disease, followed by Dementia. This book is written from the heart. It is as personal as it is informative. The author chose to use an alphabetical list of topics so that a busy caregiver can refer to a special need quickly. It is the author’s hope that this book will aid other caregivers in their sad, but meaningful journey with their loved one. While the care issue is not cancer, much, if not most, of the experiences and advice of the author apply to caregivers of cancer patients. Topics are readily accessed as this book is set up in alphabetical, dictionary form with short articles, making it easy to find and read the ones most pertinent. Caregivers rarely have time to read copious amounts of information from books or to comb though Internet googles or blogs. This book takes care of that dilemma — and then, if more informaiton is needed, Internet searches will be more fine-tuned and efficient.

RESOURCES: BLOGS
(also use the search function to find other, topic-specific blogs listed above)

AONN+ Blog
Meant for nurses, the topics in this blog are nonetheless helpful for any caregiver, such as this one on compassion fatigue. There does not seem to be a search function, so you may need to sift through the topics to get to the ones you might find helpful, but the topics can be seen at a glance so it is not unduly time-consuming.

Cancer Diary: Reflections on Cancer-Related Topics, Including Emotions
Cancer Diary is a series of blog posts on the MSI Press Blog, which are uploaded each Monday, on topics related to cancer—a reflection of something current, about someone with cancer, about something related to cancer, a reaction of someone to cancer, the effects of cancer on patients and caregivers, the role of doctors and care providers, and the like. Unlike the CCC, which is essentially an information site, the Cancer Diary posts are meant to share personal experience, emotions, insight, and support. Begun on August 16, 2021, the day that Carl Leaver died from Cancer of Unknown Primary, these posts continue on a weekly basis.

CCC maintains an updated, current List of Topics Addressed on Cancer Diary.

From time to time, other posts about cancer have appeared and continue to appear on the MSI Press blog, of which Cancer Diary is only the Monday post; these other (non-Monday) posts include excerpts from books. The link in this paragraph sorts out the cancer posts from other posts.

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 offers more than just 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

Coping with the Big C
Blog posts providing information on research and a lot of functional information; combination website and blog.

I Had Cancer
Blog posts along with information, personal stories, and a shop. IHC is also a private group that offers one-one-one personal connections where cancer patients and survivors can safely talk to someone like themselves.

Living with Cancer of Unknown Primary blog
Blog posts also make forays into other kinds of cancer.

Something to Think about: a blog on the end of life
The author of Gone from My Sight and A Place in My Heart, Barbara Karnes, also maintains a blog with answers to questions that are hard to find elsewhere: Something to Think About: a blog on the end of life.

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.

RESOURCES: FINANCIAL RESOURCES & SUPPORT 

Co-Payment Assistance Foundation
Free Cancer Care packages (a wide variety of packages with a wide variety of helpful gifts–one even includes dog food–to help out a patient with cancer
Mend Together offers gifts and financial help through its gift & cash registry
St. Jude Children’s Research Hospital (for children)

RESOURCES: PODCASTS AND VIDEOS

Burnout among Caregivers. Risk factors leading to abuse because of criticism from the patient (and others). Anger coming from stress, coming from overwork and fatigue. Does not give a lot of suggestions for help, however, it can help a caregiver to realize that some strong emotional reactions are not uncommon. The burned-out caregiver is not alone; sometimes knowing that is very helpful for managing the burnout psychologically.

Caregiving 101: Cancer Caregivers (video) provides really insightful video, covering the roles of and help for informal caregivers (the relatives who are working 8 hours a day or more providing care and, sometimes, too holding down a job). Good overview and good ideas for where and how to get help.

Compassion Fatigue. A large collection of video tapes on various aspects of compassion fatigue among caregivers. Burnout, stress, the equivalence of PTSD (secondary PTSD), over just being tired beyond the ability of sleep to renew energy can lead to compassion fatigue. Some of the videos offer suggestions on how to manage compassion fatigue (for professional caregivers as well as informal ones), e.g., maintaining humor, having something outside the caregiving such as working out, taking time off (yeah, not always possible for the relative caregiver). The video on deconstructing compassion fatigue is insightful for those who are “losing it.”

The Caregiver’s Guide to Cancer Podcast contains stories and tips from caregivers and patients.

RESOURCES: NATIONAL HELPLINES

American Cancer Society maintains a 24/7 helpline at 1-800-227-2345. The website also has a chat button for an interactive online helpline. There is the opportunity to talked to a trained cancer specialist or to find support in one’s own community.

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

Esophageal Cancer Education Foundation has a 24-hour hotline: 732-385-7461

Susan G. Komen (organization) maintains a helpline for women suffering from breast cancer. The phone line is 1-800-GO KORMEN; the email connection is helpline@komen.org. Hours are not listed on the site.

The National Suicide Prevention Hotline, 800-273-TALK (8255). No, suicide is not a good alternative to dealing with cancer, but sometimes it seems impossible to keep on keeping on. The National Suicide Prevention Hotline is there to walk through emotional reactions with cancer patients as well as those caregivers who are strung out, sitting on the cliff of caregiver burnout and compassion fatigue, feeling helpless and hopeless. Those feelings are normal. suicide is not. The helpline is staffed by those who understand and can help.

WORLDWIDE WEBSITES IN SUPPORT OF CANCER PATIENTS, FAMILIES, CARE & RESEARCH

Carl’s Cancer Compendium information focuses most heavily on US-based resources because that is where Carl lived and where those involved with the CCC live. However, most of the information is is generic, Cancer is cancer wherever you live. The informational links about cancer apply no matter where you live, and research results know no geopolitical boundaries. What differs is care practices and resources. If you live somewhere other than the USA, some of the links below may be helpful for you.

  • France
    • Cancer Support France. Help for English speakers touched by cancer in France. General website, plus listing and connection to CSF centers in nearly all regions of France.
    • Héphaïstos, Cancer-related research software company using artificial intelligence. Based in France, operates worldwide, English-language Face Book page linked.
    • Listing of over 70 cancer support organizations, with varying missions, can be found HERE.
  • India
    • Can Kids Kids Can. The National Society For Change For Childhood Cancer in India is a National NGO working across the entire spectrum of childhood cancer care.
    • YANA (You Are Not Alone). YANA provides holistic support to a child with cancer and the family, from moment of detection, through diagnosis, treatment and after.
  • Jordan 

FUTURE PLANS

Carl’s Cancer Seraphs (C-CaS)
The name very well may change. The plan is to start local and build national, providing “angels” with personal experience of cancer to be available to caregivers trying to cope with relatives with cancer. The mission is to be present at regular intervals and on call to lend a helping hand physically and emotionally. In-home hospice caregivers have access to hospice aides, but hospice generally requires commitment to dying, not to living, to letting nature take its course, not to fighting the dying of the light. If patients want to be on oncological treatment plans and follow-up, then they are generally left without much support. Visiting nurses, often not even available, generally give advice and may do some simple nursing tasks on something like weekly visits, but helping to change a patient, helping a patient move from one room to another, helping a patient bathe, preparing special meals and even shopping for them, are not tasks that they do; these concrete care tasks generally fall to relatives, with little back-up, especially in more rural areas. C-CaS hopes to fill this gap, providing real people with real-life experience available in real time,

Interactive Care-by-County Map
This is a long-term proposal and, like this site, will be expanded upon incrementally. The plan is to provide a map of the counties in the USA where a click on the map will provide a link to local sources for help: in-home care, in-home support, respite care, counseling support, animal cancer support. Where these were difficult to find for Carl because his family did not know where even to begin to look, we hope this map will make surviving the cancer experience easier with the click of a mouse.

We will begin with the least populated counties because those are the ones where patients and their families are most commonly without easy access to support, as was the case with Carl and his family.

Once we have enough of a start on the map to provide a generic template, we will look for crowdsourcing volunteers to help expand the map exponentially.

Until we have enough information to build a map, we will make available a document listing of Resource Information for Counties that we have begun to collect. It is currently in nascent format, but we will add weekly to work toward making it more robust.

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.

Publications: Personal Experiences of Cancer Book Series
MSI Press is already accepting small-book manuscripts (50-100 pages) about cancer experiences worthy of sharing in its San Juan Books (hybrid publication) division. Books must meet MSI Press quality standards, as determined by its editorial team. Send manuscripts for consideration to editor@msipress.com.

 

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IMPORTANT CANCER AWARENESS DATES
JUNE
Cancer Survivors Month

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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 or come across inaccurate information,
please inform us at info@msipress.com.