Cancer Survivors: 8 Lessons We Wish We'd Known

iStock_000017513037XSmall

A few years back, New York Times reporter Dana Jennings posted a very moving blog titled Ten Lessons of Prostate Cancer.

It touched a nerve for me -- and many of us in Cancer World -- because we all have a desperate desire to connect with others living with cancer in their lives and discover the tidbits of knowledge that only experience can teach. At Caring.com, we have a series of articles titled What I Wish I'd Known, in which well-known people share the lessons they learned in caring for loved ones. Below, in my own personal order of importance, are a few of Dana Jennings' ten lessons, augmented with others from the more than 260 people who commented on his blog, and still more from community members at Caring.com who've taken the time to share their wisdom in group postings and answers to others' questions. Feel free to add to this list.

8 lessons of caring for someone with cancer

1. Doctors forget to share the gory details. Boy, don't we know it. The list of what we don't know when we walk out of medical appointments sometimes seems longer than the list of what we do know. Dana writes that after prostate surgery, his testicles swelled up and turned bright red, something his doctors failed to mention. Others report that doctors have failed to mention such things as the need for drains -- and drain emptying -- following surgery, and the possibility of numerous side effects from chemo, everything from peeling, painful hands and feet, to a constant bad taste in the mouth. Worst of all, says oncologist Hope Rugo in her column, doctors are hesitant to share information on what families can expect as cancer progresses. This leaves the family in a constant state of reactivity, when accurate information could have allowed them to prepare for what was to come.

Lesson: Don't be nervous about asking the doctors, "How does this type of cancer typically progress?" and "What can we expect a few months from now?"

2. Insurance can cause more stress than cancer. Half the comments on Dana's blog were reports of insurers failing to pay -- and we hear plenty of those horror stories, too. Canadian patients comment that their state-run system leaves them free to focus on what matters: getting better.

3. Not all blood and chemo technicians are created equal. Dana divides them into the gliders and the pokers. My friends and I called one particularly clumsy chemo nurse "Sadistic Sadie," though, of course, never when she could hear. It's definitely acceptable, when you walk into a chemo center or lab, to request a particular tech you know to be skilled and gentle.

4. Nurses know, and anticipate, what you need. When a dear friend was in the hospital recovering from a mastectomy, it was the nurses who noticed that she couldn't open the lemonade we'd brought her and observed that her dosage of pain meds appeared to be too low. And when they shoo all of you out of the room, it may be because they realize the patient desperately needs sleep but is too polite to say so.

5. Cancer is different in younger patients than in older ones. Early stage breast cancer tends to be more aggressive in women under 40. For men, a PSA (prostate-specific antigen) reading that's "low" for a 70-year-old might not be for a man in his early 40s. PSA charts don't necessarily apply to younger men.

Lesson: Don't settle for generic information, but find out what you need to know for the particular situation.

6. Hospice is not just for the dying. I can't tell you how many cancer patients and their families say they wish they'd known to call hospice sooner. When my dad was ill with esophageal cancer, it was the hospice nurses, not his doctors, who suggested morphine patches when it was too hard for him to swallow pills. So, for the record: You can call hospice anytime a cancer is no longer considered "curable." You don't have to stop chemo to call in hospice; the chemo just needs to be designated palliative rather than curative. You can initiate hospice when there's reason to believe a patient might have six months or less to live, but you can also renew hospice if the person is lucky enough to have more time -- or cancel hospice if there's a miracle and it's no longer needed. And the minute you call hospice, you initiate a much higher level of personal care, often at little or no additional expense. In other words, many of your reasons for not calling hospice should be set aside.

7. Eat your broccoli -- and kale and other greens. Research shows that vegetarians and others who eat a diet high in cruciferous vegetables and greens have lower rates of cancer. Conversely, a diet high in fat, particularly fat from red meat, has been associated with cancer, particularly colon cancer. This is truly worth paying attention to.

8. Cancer can be a punch line. Dana describes the ways the line "I've got cancer" helped get him out of walking the dog and enabled him to commandeer the TV. It's also, I've found, a great way to help employers and other authority figures reorient priorities, and a great way for all of us to put things in perspective.


over 2 years ago, said...

Understanding of Cancer and how one should go about for treatment is well written. Very useful to all.


almost 4 years ago, said...

We just found.out my.girlfriend.has leukemia. Things have happened so fast I have just found.the time to read about things. Can someone please.tell me how I.go.about checking out the.oncology dept as.far as how.good it is. I want.to.make sure we are at the.right place and.she gets.every opportunity to beat this.thing. as.well.as.her.doctoe too I.don't want.to.look.back and.say if if I.only knew.she.might.have.made.it Please help


over 4 years ago, said...

Yes your right about Medicare......A &...B. ,my person That I Care For . only Small ssi- at :$720.00 month...when She turn age 65 years of age..She has been-Mentally-disorder....for most of , but now she is Focusing on Her Brest-cancer, Yes she had 15- years ago she Had Lymphona & Brest Cancer, same side Left Brest. she got 3 opinons are the Removal of the left brest, this will happen on may 8th.2012, she will stay over night . in the hospital, then home!As She is Going Through this Einstein Hospital..of Philadelphia,pa . calling from billing dept. Looking for $92.00 from..mammogram & Ultra sound, from 2/14/12..,20%.. ! I Got her extra Help from. D.P.A,..for medical.for this Surgery may 8th.2012, From: George M. Caregiver.of above PT....paray...bye for now


about 5 years ago, said...

Thank you for this awesome, simplified article for those of us professionals and the lay people. Short and sweet answers to difficult situations!


about 5 years ago, said...

This is a very informative and straight forward, to the point for those of us professionals and the lay person....thank you!


about 5 years ago, said...

Thank you for sharing the tips. I wanted to mention that I found tremendous help from other cancer patients on the online forum, Team Inspire. There are many survivors there who share what is keeping them going. I made my way to The Block Center for Integrative Cancer Care because of them and it's the best thing I've done. Joyce http://makingsenseofitall.joycerothman.com


about 5 years ago, said...

Very good tips! Keep them coming, as a Grandmother of a (two when diagnosied) four year old cancer patient and the daughter of a breast cancer patient, I need all the information I can get. Thank you for your candid tip!


about 5 years ago, said...

my mom in law has stage 4 breast cancer. we always say that if the cancer doesn't kill her, the insurance company will. she says she has a tremendous amount of pain- and some of it is doctors! you have to pry information out of them with a fork! it was their refusal to tell us details that led me to this site in the first place! the part about hospice is information i'll file away for later. we didn't know that, and we may be utilizing that info. so thank you!