10 Things I Wish I Had Known Before Cancer

by Jane Ashley

One of the things that we learn about cancer very soon into our treatment is that everyone is different — we respond differently to chemotherapy and radiation. Some of us recover rapidly from a surgical procedure while for others, it takes an extended time. Every person’s cancer experience is different, yet we share many of the same experiences.

Things I Wish I Had Known Blog

We think, “Boy, I wish I had known about this.” Another patient says, “I had no idea this could happen.”

What are some of the things that we wish we had known before our treatment began? Here are 10 things I wish I had known before cancer.

1) I wish I had known more about the chemo drugs and side effects. Many cancer treatment centers offer chemo orientation before your first chemo session. A chemo nurse explains the procedures once you arrive for your appointment, takes you to the infusion room so you know what to expect and provides you with literature about your particular chemotherapy drugs. Orientation may also include information on possible side effects. Knowing what to expect decreases anxiety. If you want to know more about the drugs you’ll be receiving, ChemoCare.com is an excellent resource. This website provides detailed information about virtually every medication used in cancer treatment, the possible side effects and how to cope with the side effects.

2) I was shocked when my chemo was canceled because of low white cell counts. I wish that I had known that so when my fourth chemo was canceled because I developed neutropenia (dangerously low levels of neutrophils, a specialized white cell). I worried about my chemo being delayed and the impact on treatment success. Low red cell counts, low platelets, a cold, bone marrow cancer and radiation damage are just some of the reasons that your chemo might be canceled.

3) I wish I had known that I could get a second opinion. Many patients are in shock over their diagnosis and want to begin treatment ASAP. We don’t realize that there are guidelines provided by the National Comprehensive Center Network to guide oncologists in the most appropriate treatment for each stage and every kind of cancer. These guidelines are provided, at no charge, to patients. The treatment of cancer requires trust on the part of the patient. If you have doubts about your treatment, get a second opinion from a larger, teaching hospital. A good oncologist will encourage patients to get a second opinion. Don’t worry about offending your oncologist or hurting their feelings — they are medical professionals and should never discourage you from obtaining a second opinion.

4) I wish I had known how long it would take to get over my treatments. We all think, hope and believe that once we’ve completed our treatment that we’ll bounce back quickly to being ourselves. Of course, everyone is different … but many people must cope with lingering side effects including fatigue, neuropathy, chemo brain and other longer-lasting side effects.

How Long

5) I wish I had asked for biomarker testing at diagnosis. Most patients don’t know much about cancer at diagnosis. We don’t know about genetic testing or biomarker testing. Biomarker testing is approved by most insurance companies for Stage III and Stage IV solid tumor cancers. Biomarker testing is used in breast cancer to help determine which patients benefit most from chemotherapy. Biomarker testing helps guide leukemia treatment of patients just diagnosed. Even if we’re halfway through our treatment, ask your oncologist about biomarker testing and its potential benefits for your particular cancer.

6) I wish that someone had told me that my chemo would make me sterile. I could have saved my sperm in a sperm bank. Young adults facing cancer should always have fertility counseling so they know their risks of becoming sterile and have the option to bank their sperm or eggs before treatment begins.

Sterile

7) I wish that someone would have told me how much my copays were going to be so that I could have applied for financial assistance sooner. We all hear on the news how much cancer treatments cost, but no one comes out and tells us the amount of the copay. Some patients may be afraid to ask before treatment begins because they are afraid that they might be turned away for lack of copay funds. But most cancer centers have a social worker that you can talk to about the financial part of treatment. Most likely, they will refer you to an insurance coordinator or a financial aid coordinator — either of these people work with patients every day to help them find the assistance they need to cover their copays. Don’t be embarrassed. Cancer is an expensive disease.

Co Pays

8) I wish that I had known more about the side effects of radiation. Many people don’t realize that about 60% of cancer patients have radiation as part of their treatment. Although we sign releases acknowledging that we’ve been told of the potential side effects, most of us don’t understand how they will impact our daily life. From difficulty swallowing to chronic diarrhea and from loss of teeth to vaginal stenosis, these side effects impact our quality of life.

9) I wish I had switched oncologists sooner. We will have a long relationship with our oncologist because they coordinate our treatment and coordinate our checkups, scans and lab tests for five years afterward. If you feel uncomfortable with your oncologist, it’s best to switch to one that you feel a “connection.” As patients, we want and need accurate information, but most of don’t do well with someone who is blunt, abrupt and discouraging. 

Switched Oncologists

10) I wish I had known that I’d have to reinvent myself afterward. Cancer treatments and their side effects … many of which are long-lasting … force many survivors to adapt to the “new normal.” Steroids used to counteract side effects sometimes trigger diabetes or cause existing diabetes to worsen. Some patients can return to work and have to take disability. Insomnia is common among cancer survivors. Most of us hope that once treatment is over, we’ll return to normal almost immediately. Many survivors find that it takes a year or more to recover and adjust to their new normal.

Despite the setbacks and lingering side effects, most of us are grateful that we are still here. Those of us at WhatNext.com are always willing to share our experiences to help make our new WhatNexters be better prepared for “Life with Cancer.”

What do you wish you had known before cancer? Please comment below. 

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