The 10 Things They Never Tell You About Cancer

Patient Expert

It's not the cancer that hurts. It's the treatment.

Breast cancer usually isn't painful - until treatment starts. That lump you felt? Didn't hurt, right? The follow-up MRI, even the biopsy - not too bad. But once treatment begins in earnest, you'll probably experience some pain - from minor, to quite major. Thankfully, there are drugs and other options to deal with the pain and discomfort of cancer treatment; use them. Cancer is no time to keep a stiff upper lip.

Cancer changes your life forever.

Once you hear those words "You have cancer," there's no "getting back to normal" - not the normal you once knew. You'll most likely make it through treatment; you may even go forward without lasting side effects. But you've stepped over a line - regular people on one side, cancer survivors on the other. From now on, you're a survivor - with all that entails, both good and not-so-good.

Aromatase inhibitors (AIs) may damage your hair.

This unknown (or at least little-mentioned) side effect might be small potatoes to the FDA, but it's big for those of us who've finally managed to grow some hair back after chemo. Since AIs mimic the effects of menopause, you may find yourself with thinning "old lady" hair while on this drug. Thankfully, there's every chance you'll regain at least some semblance of healthy hair once you stop taking Arimidex, or your AI of choice.

Side effects may not disappear for years - if ever.

"Oh, I can't wait until all of this is over" Well" unfortunately, some cancer treatment side effects may linger and become permanent. Chemo-induced neuropathy - tingling hands and feet - is probably chief among the lasting side effects. But others (itching, pain, lymphedema, thin hair) are also possible. Hope for the best, but prepare yourself for the possibility of lifelong damage.

You'll probably gain weight while taking Tamoxifen.

Every oncologist will deny that this is a side effect, but my anecdotal research - read: talking to my friends - shows that about 8 out of 10 gain weight while taking tamoxifen. The good news is, the weight gain doesn't have to be permanent; many lose most of it once they stop taking the drug.

The cancer center is a great place to meet new friends.

I made some of my closest friends during the cancer journey, enjoying deep and lasting friendships a decade later with women I would never have known, were it not for cancer. A chance meeting in the waiting room; side-by-seats in the chemo infusion suite, or a more formal buddy program may all introduce you to future friends of the heart. Be open to new people in your life; it's lovely to have someone to share cancer with.

Show me the money.

At the end of the day, it doesn't matter that you have cancer and may be dying; everyone still wants to be paid. Even if you have the best health insurance in the world, or faithfully pay your Medicare premiums, the warmth, love, and caring you feel all around you doesn't extend to debt forgiveness. Get over it.

There are hidden perks.

The radiation waiting room offers chair massage. A hospital volunteer makes the rounds with snacks, hand cream, and soft pullover hats - all free. You get help from a professional bra fitter; the hair stylist creates a cute new 'do of your very short hair. You get a special parking space! Take advantage of every cancer freebie you see - you've earned them.

It's your right to refuse recommended treatments.

What if the first week of your six-week radiation treatment results in disabling fatigue? Know your options. Ask your doctor for the absolute (not relative) risk of cancer recurrence based on your preferred treatment, vs. the recommended treatment. Perhaps your risk of recurrence following treatment X is 4%; if you follow your own path, 8%. Yes, your relative risk is doubled; but your absolute risk is only 4% higher. Know the data, then follow your heart.

You may never hear the words, "You're cured."

"Is my cancer gone?" For many of us, there's no clear answer. Especially if your cancer was invasive and has spread to lymph nodes, it may be out there" lurking" ready to return in a year, 5 years, 12 years - there's no statute of limitations for cancer. "No evidence of disease" - NED - is what you want to hear each year at your follow-up appointment. It simply means that, as far as any test can tell, you don't have active cancer. Which is probably as good as it gets.