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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Summary

Even the possibility of a recurrence can be devastating. You’ve had enough experience with colorectal cancer that all kinds of thoughts are likely to be swirling around in your head. This document is intended to help you through the experience by breaking down the issues one at a time.

Prior to diagnosis

  • If you have symptoms which lead you to believe you are experiencing a recurrence, contact your cancer doctor immediately. Let him or her tell you whether to arrange for an appointment. Do not allow concerns about being considered to be a worry-wort keep you from getting timely medical care than can save your life.
  • It is likely your doctor will order tests similar to the tests you had when your colorectal cancer was first diagnosed. (For more information, click here.)

If you have a diagnosed recurrence

There are three different types of cancer recurrence. The different types are defined by where in your body the cancer appears.

  • Local recurrence:
    • The cancer appears in the same place where it was first found, or very close by.
    • Local colorectal cancer is considered to be treatable and potentially curable.
  • Regional recurrence:
    • The cancer appears in the lymph nodes and tissue near where it started.
    • Regional colorectal cancer is considered to be treatable and potentially curable.
  • Distant recurrence:
    • The cancer appears in another part of the body which is further away from where it started. This is known as "metastasized" or "advanced cancer."
    • A distant recurrence of colorectal cancer is not curable, but it is treatable. While that may sound frightening, keep in mind that a disease like diabetes is also treatable but not curable.
    • If you have advanced cancer, instead of this document, read: Colorectal Cancer: Advanced 

We suggest that you consider the following three steps: 

Step 1.   Even if you have read similar parts of our guide before, we suggest that you first review “The Basics” in the attached section because they are the foundation for all of our discussions.

Step 2. Read about managing your medical care. Part of medical care is to start living a healthier lifestyle such as a cancer prevention lifestyle. 

Step 3.   At least skim the other sections of this document to see how the information applies to your life. Pay particular attention to:

  • Information about dealing with emotions. No matter how much one thinks about the possibility of recurrence, there is never enough preparation for the reality when it happens.
  • The suggestions about eating healthy. Diet has proved to be an important factor in the occurrence or recurrence of colon and rectal cancer.

While information can help you feel in control, too much can also be overwhelming. If you begin to feel overwhelmed, take a break and return when you’re ready to learn more. Or ask someone else to review a particular subject for you. Keep in mind that family and friends want to help even after treatment ends.

The Basics

FOR INFORMATION ABOUT THE FOLLOWING SUBJECTS, SEE THE DOCUMENTS IN “TO LEARN MORE.”

Even if your cancer is at an advanced stage, even a 1% chance of long term survival means that one in one hundred people will survive. With treatment, there is no reason to keep you from being a person who survives.

Do your best to keep a realistically optimistic attitude. We refer to this as a “positive attitude.” 

  • There’s a reason for the adage “the glass is always half full and half empty.” Try to focus on the half full side.
  • Keep in mind that we are human. Do not become a slave to being positive or wallow in guilt for those times when you aren’t.  (The Survivorship A to Z document in “To Learn More” provides tips).

Focus on what you can control. Prepare the best you can for what may come your way.

Keep in mind that you are a person living with a history of colorectal cancer. Do not let cancer define who you are. You are not your disease.

When you have contact with an employer, governmental agency or insurer:

  • Be courteous and friendly. Only use anger consciously and sparingly.
  • Make notes so you have a record of what was said and agreed to
  • Keep copies in easily available files

Finances

For information about each of the following subjects, see the articles in “To Learn More”

Cash and investments which can easily be converted into cash can be king when coping with a recurrence. Unless access to cash is not an issue, keep as much cash or cash equivalents available as you can until you get news that there is no longer evidence of disease.

  • Put off discretionary purchases for now. 
  • Don’t give in to the urge to splurge way beyond your means on things you have “always wanted” or the trip you were planning for “someday.”  Too many people survive and ruefully find themselves saddled with extraordinary debt.
  • Use credit instead of cash when possible – particularly credit cards which have a benefit that pays off the balance in the event of death.  (To learn how to get more credit, click here.
  • If you are considering purchasing an expensive item such as a car, see if you can get credit life insurance on the balance. Generally this kind of insurance does not request medical information. It will pay off the outstanding amount of debt in the event of your death. (For information about credit life insurance, click here

If you have health insurance:

  • Maximizing use of your health insurance policy will minimize your out-of-pocket expenses.  To learn how to maximize your health insurance, click here;  to maximize Medicaid, click here, and to maximize Medicare Part D, click here
  • Financial assistance may be available if needed to pay for premiums, co-insurance or co-pays. For information, click here. 

If you do not have health insurance:

  • Use the information in our document about Uninsured to minimize the cost of treatment.
  • Financial assistance may be available. For information, click here. 
  • You can still buy health insurance. (To learn more, click here
  • Veterans qualify for veterans health coverage. (Click here
  • You may be able to qualify for Medicaid. For information about Medicaid, click here. For information about transferring income or assets to qualify for Medicaid, click here.  

If you are in a financial bind:

  • You are not alone. People with medical expenses represent over 60% of the people filing for personal bankruptcy. Over 75% of those people had health insurance. If you are having difficulty paying medical bills or other debt (we call it experiencing a “financial crunch”).
  • To learn time tested techniques to use in a financial crunch, click here.  As you will see, one of the techniques is to look for new uses of your assets – including selling a life insurance policy as a Viatical Settlement or a Life Settlement. (For more information, click here and here respectively.)
  • If all else fails, consider bankruptcy. There should be no shame with bankruptcy. It is such a right for Americans that it is built into the constitution.  (See “To Learn More.”)

When you have extra money:

  • Work toward a goal of a cash fund (an Emergency+Fund) equal to 3 to 6 months of monthly expenses. This is the amount of money generally recommended to have on hand in case of periods of no income or unexpected expense. It does not mean you have to put this much money away today. However, now is the time to start. (If you work in a specialized area where there are very few jobs, aim for 12 months of expenses in your fund because if you lose your job, it may take longer to find another one.)
  • Put as much money as you can spare into your retirement accounts. 
    • Saving tax dollars is the same as earning extra money. 
    • You can usually withdraw money or borrow it if necessary. If you become disabled, withdrawals are usually without penalty. 
    • Money in a retirement account is protected from creditors. 
  • If you have more than one retirement account:
    • First priority is to fund accounts in which your employer matches your contribution. The value of your contribution is increased as soon as you put it into the account.
    • Then consider:
      • Which accounts are easier to withdraw money from or borrow against in case of unexpected expense. Pay particular attention to when you can do these things as well as the costs you’ll pay, such as penalties.
      • Which accounts are earning you the most money.
    • If you need help with this decision, speak with a financial planner, your accountant or attorney.
  • If you still have money left, open new accounts to the maximum permitted by the tax laws.  

Investments should take into account the possibility of a shortened life expectancy. Avoid investments that cannot readily be turned into cash.

A diagnosis heightens the importance of minimizing taxes.

  • Check out all the expenses that are considered to be medical expenses for tax purposes.
  • A diagnosis is not an excuse to skip filing tax returns.
  • Plan to minimize chances of an audit. If audited, your diagnosis may help provoke compassion from an auditor.

The above subjects are discussed further in the documents in “To Learn More.”

Government Benefits

For information about each of the following subjects, see the documents in “To Learn More.”

Depending on your particular circumstances, you may be entitled to government benefits such as:

  • An income due to disability (Social Security Disability Insurance) or because your income is low,(Supplemental Security Income)
  • Health insurance (through Medicare or Medicaid or the VA) or
  • Food assistance (Supplemental Nutrition Assistance Program, formerly Food Stamps).

There are no government benefits which distinguish between colorectal cancer and other health conditions or whether your health condition is just diagnosed or is a recurrence.

It is worth paying particular attention to an income from Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). If you do not currently qualify, you may be able to take steps to qualify.

Insurance

For additional information about the following subjects, see the documents in “To Learn More.”

HEALTH INSURANCE

If you do not have health insurance: Do whatever you can to get it.

  • Despite your health history, there are a variety of ways to get health insurance. The easiest is through a group plan offered by an employer or membership organization. The larger the employer, the more likely it will have an employee health plan.
  • You cannot be asked about your health history by a prospective employer.
  • Before applying for a new job, do what employers do before setting an interview appointment: Search your name through several search engines such as Google (link to www.Google.com) and Bing (link to www.Bing.com). If there are mentions of your health condition, such as on a social network site or a disease-nonprofit site, either remove the information or change your name to a fictitious name or ask the site to block search engines.
  • Each employer and/or each plan may have different rules regarding eligibility of dependents for coverage. Most include children and the spouse of the employee; some may include domestic partners as well. As you will learn in our information about Seeking Work (link to T89), do not ask about details of benefits until you are offered the job.
  • Once you get health insurance, learn how to maximize use of it.  How to do that differs depending on the type of policy you obtain. Survivorship A to Z provides information in the documents listed in “To Learn More” about maximizing use of a health insurance plan according to the type of policy. If you do not know what type you have, see Types of Health Insurance Policies and How To Know Which Type You Have 

If you have health insurance:

  • Do whatever you need to do to keep health insurance. It is likely one of your most valuable assets.
  • Learn how to maximize use of your policy. How to do that differs depending on the type of policy you have. Survivorship A to Z provides information in the documents listed in “To Learn More” about maximizing use of a health insurance plan according to the type of policy. If you do not know what type you have, see Types of Health Insurance Policies and How To Know Which Type You Have
  •  If you and/or your spouse leave a job through which you have your group health insurance, you may be eligible to continue the coverage at your own expense under the provisions of the law known as COBRA.
  • If there were medical expenses that your insurance company refused to pay for that you think should be covered – keep pressing the company. Appeal. Be persistent. (The documents in “To Learn More” show you how.)

LIFE INSURANCE

If you have life insurance:

  • You may be able to get money from it while still alive if you have a shortened life expectancy either from the life insurance company (a "Living Benefit") or through a transaction known as a Viatical Settlement or a Life Settlement
  • Check to see if you can increase the amount of the death benefit. Many policies have a feature guaranteeing the right to increase the death benefit. If the policy is through work, you may have the right once a year.

You can still buy life insurance, for example through open enrollment periods at work or by accepting the guaranteed issue offers you receive in the mail. It is recommended that you purchase as much life insurance as you can.  In addition to traditional reasons, such as for your children, as just noted, a policy can be a source of money while you’re still alive. (See: Life Insurance: How To Buy Despite A Health History   

OTHER INSURANCE

Insurance protects against losses that the average person cannot bear alone. It is important for everyone to have basic insurance. The need is even greater living with advanced cancer because it is likely harder to recoup in the event of a large loss.

Do your best to carry basic insurance such as Homeowners Insurance (either the variety for an owner or for a renter). If you own a vehicle, carry at least Automobile Insurance in the amount required by your state. We provide impartial information about these coverages, including steps to take in the event of a loss. See To Learn More.

While Disability Income insurance which provides an income if you become unable to work and Long Term Care Insurance would be helpful, you are not likely to be able to purchase either of them on your own. You may be able to obtain such coverage from an employer such as the government. (You may also be able to qualify in time.) 

Planning Ahead

FOR INFORMATION ABOUT THE FOLLOWING SUBJECTS, SEE THE DOCUMENTS IN “TO LEARN MORE.”

If you haven’t before, now is a good time to get your legal affairs in order. While you are thinking about it, this would be a good time for your entire family to focus on these subjects. Life changing events can happen to any of us at any time. (Shifting the focus to the family unit also takes away any fear on their part that you are taking these steps because of health news that you are not sharing).

At the very least, consider executing documents known as Advance Directives which let you stay in control of the medical care you do or do not want if you become unable to speak for yourself or become unconscious. The documents are free, easy to complete, and don’t require a lawyer. Of particular note is a Health Care Power Of Attorney which appoints a person you trust to make decisions for you if events warrant – and enforce them if there is any push back.

If you have children, make plans in case you are temporarily or permanently unable to care for them.

Consider creating something like an Ethical Will which tells your children what you learned during your lifetime and family history. Or perhaps a video or photo scrap book of your times together.

Keep control of what happens to your assets if you die by at least having a will. Wills also help prevent family fights. Wills are not expensive, and may even be free. We provide a form to help you pull together the relevant information to make the writing easier – particularly if you use a lawyer to write it for you.

Thinking about, and talking about, funeral plans will save unnecessary stress and a good deal of money. This is known as pre-planning.  Pre-paying is not advisable (unless, of course, you’ve done it already).

NOTE:  Check all documents, securities accounts and banks accounts with beneficiaries on them to be sure:

  • The beneficiary you want is listed. 
  • If there is more than one beneficiary, the split between them is clear.

Emotional Issues

A recurrence takes a heavy toll on everyone: the survivor, spouses and significant others, family and friends.

The emotions which surface with a recurrence are different in both quality and scope from the emotions which are encountered when newly diagnosed and during treatment.

Do not allow emotions to keep you from exploring all medical options available to you, getting a second medical opinion, and moving forward with treatment.

If emotions get in the way, speak with your doctor or a mental health professional who is experienced in working with people with a life changing condition.

Feelings To Anticipate

People who have had a recurrence of colorectal cancer report the following:

  • Fear that borders on terror, no matter how good the odds are that the recurrence can be eliminated or made livable.
    • Fear can show up in a variety of areas, such as fear of death, fear of going through different, stronger and more damaging treatments or fear that the people closest to you will abandon you.
    • One fear that can show up is fear of an ostomy. Keep in mind that IF you will need an ostomy, today:
      • There is nothing that you cannot do with an ostomy. 
      • No one can see an ostomy under your clothes.
      • There is no longer any smell.
  • A feeling of unfairness that this is happening to you. You may even find yourself wishing that other people would get cancer as well.
  • Anger – at life, at the universe, at God or another higher power, perhaps even at your oncologist, at the waste of time and energy for everything you did to help prevent a recurrence. Anger can show up in many ways, including in the form of frustration in daily activities and with the people around you.
  • Depression.
  • Feeling sorry for yourself.
  • Grief and a sense of loss over such subjects as:
    • The loss of the feeling of health and well being you had prior to finding out about the recurrence.
    • The loss of the future and the opportunity to do the things you planned on doing
    • The loss of relationships which ended
    • The loss of career opportunities you had to forego to have treatment.
    • All the other losses you’ve suffered in life.
    • The shaken, or entire loss, of faith in the medical system
    • A loss of trust in the medical system in general or your oncologist in particular, and perhaps your ability to make a reasoned medical decision or to rise to the challenges.
  • Weariness about facing treatment all over again.

Some people even contemplate suicide without realizing it is a permanent solution to a temporary problem.

For a discussion of various feelings, and tips for dealing with them, see the documents in “To Learn More.”

Friends, Family and Caretakers

While your main job at this point is to focus on yourself and getting the medical care you need, give consideration to the needs of the people around you, particularly your team of caregivers.

If they need help, suggest they speak with a mental health professional, join a support group  or a self help group, and/or make contact with someone else similarly situated.

Holidays

If the holidays are approaching and you are having a difficult time emotionally related to colorectal cancer, learn how to cope by clicking here.

Managing Your Medical Care


As noted above, for information about managing medical care when there is a recurrence, click here. 

Day To Day Living

If you have not yet started treatment for a recurrence of colon or rectal cancer, it is worthwhile rereading (or reading for the first time if you didn’t read it before) our information and practical tips for the various aspects of day to day living during the time between the decision as to which treatment to undergo, and the start of treatment. Click here

If you are in treatment, it is worthwhile rereading (or reading for the first time if you didn’t read it before) our information and practical tips for the various aspects of day to day living during treatment. Click here.




Work Issues