Why Be an Assertive Cancer Patient?

There are at least three good reasons to be an assertive cancer patient:
* You will get better care.
* You will probably live longer.
* You will feel better about yourself and your illness.

This Blog Is for You
There is nothing like being stripped of your own clothing (and identity) and dressed in a backless cotton hospital gown to make the most self-confident among us feel like children. Suddenly, we find ourselves embarrassingly dependent on our doctors and their opinions of us.

Even people who are comfortably assertive in various aspects of daily life typically do not bring this same assertive style with them into a medical setting. There are a number of reasons for this, including the strong emotions that come with the diagnosis of a serious, potentially life-threatening illness, and our socialization to be “good patients.” In addition, the medical world is an alien culture for most of us, with its own language, hierarchy, and rules--one that takes some getting used to.

I am writing this blog to help people with cancer who, like me, realize that if there was ever a time to be assertive, it is when faced with cancer. Even if you are mostly positive and self-confident, you will probably find these skills deserting you when you enter a doctor’s office.

Many people who do NOT see themselves as assertive will realize that they need these skills when faced with a cancer diagnosis. Being assertive does not mean you are brash or demanding, and it certainly doesn’t mean you are rude or aggressive. Rather, it means that you are calm, positive, and in control of your life and your health.

Whether you are newly diagnosed or have been living with cancer for some time, I hope this blog will help you take the best possible care of yourself and get the best possible care from your health-care team as well.

Read more:

You Will Get Better Care

You Will Probably Live Longer

You Will Feel Better About Yourself and Your Illness

@ Jeanne Sather 2006

Comments

[Rachel]

I really do think your message is very important. I've heard so many women complain about things that could be remedied by being more assertive, like their ob/gyn exam experiences. I always encourage them to speak up, and that it's perfectly appropriate to call an end to the exam and leave (and find a new doc) if their needs are ignored (such as in a needlessly painful exam). A bit of context from my own experience:

-A clinician recently tried to give me a penicillin shot for strep throat. I'm very allergic, which I had to tell them, despite the fact that it's in my medical record and on every form I've ever filled out, every time I've ever been there.

-I had a broken kneecap for 6 weeks because the ER docs thought it was just a dislocation that would heal on it's own. It wasn't, and I ended up having surgery after getting a second opinion.

-It took me nearly two years to have my thyroid condition diagnosed. I was told everything from "You're just too stressed" (when I was so tired I went to get checked for mono) to "All my nurses are tired, too." Grrr.

-My mom had to have a hysterectomy because of undetected cervical cancer and months of ignored complaints.

I can definitely relate. Thanks for doing the work you're doing on your blog.

[Jeanne]

Maybe you don't need to be assertive to get better care from your doctors--a new study in Britain suggests that patients who "look rich" get more time and attention from doctors.

So dress up next time you go to the doctor?

Here's the link to the story: http://news.bbc.co.uk/2/hi/health/5389356.stm

[Patti]

Thanks for having this blog, Jeanne. I am newly diagnosed with esophageal cancer (Dec. 4).

The gastroenterologist, not to mention my GP, saw no reason to run a tube down my throat to have a look despite the fact that I was there for my regular 50-year-old screening, it would take only 5 more minutes, and I've had a history of trouble in the area since I was 19.

But I made them. Upshot: because I made her do it, my doctor and I caught the thing at stage 1. Yay me.

Now I'm going to go read your blog some more.

[Jeanne]

Patti--Yay you! Not that this is happy news, but catching it at stage I is a big deal.

Please stay in touch, and please add your comments to the blog--it's really starting to come along with all the perspectives people have added.

Jeanne

[Carrie]

Hi Jeanne,
You are right on the money with this. Shortly before my mother's diagnosis, Canada's Globe & Mail newspaper ran a series on this very topic as it relates to cancer. I downloaded several good articles for reference.

The thing is, I thought we were being assertive enough, but apparently not. So, now, I have no hesitation to take up their time with my questions and not leave until I get satisfactory discussion and hopefully, answers.

Thank you for sharing this blog. I've linked to you because I consider you a valuable resource. All the best to you :)

[Jeanne]

Carrie--Thanks. And could you send me the links to the series in the Globe & Mail? I'd like to read it.

Jeanne

[Carrie]

I found it finally. The whole series is still online here -
http://www.theglobeandmail.com/cancer

[Pony]

May I tell you my assertive 'cancer' patient story?

I was 36 almost 37, standing in front of the oncology gynecologist who had just examined me. I was holding a 2 fot by 2 ft pink paper doily in front of my naked just assaulted body, facing him, in full gynecologists regalia; knife edged slacks, shiney shoes, comforting blue shirt, tie, lab coat, etc.

"We aren't collecting women's uteruses to hang off our belts you know" he loudly blurted at me, his face reddened and contorted with anger.

I had just told him I was not having a total abdominal hysterectomy and bilateral salpingeo oophorectomy. Which was what I had to have apparently because with my pap results, if I didn't I would "die a horrible painful death." This latter said as he turned on his heels, and strode out of the examining room, to leave me shaking, having dropped the doily, and the two attendent nurses gap mouthed.

With another two gynecologists to go, I consented to a cervical conization, then, at 37.

I am now 64. I stood my ground once again, last year, facing down three different gynecologists and two physicians, and instead of (repeat above) had three myomectomies, and a course of a mildly horrible drug.

I test clear. I never had cancer in the first place. But never let it be said that gynecologists (or gynecology-oncologists) will pass up the highly lucrative fee for TAH BSO (total abdominal hysterectomy and bilateral salpingeo oophorectomy) which averages around FOUR times what they are paid for a myomectomy, that latter surgery ovary and uterus sparing, and also sparing of all the devastating side effects women suffer when those procedures are doen (sooner or later they will). And myomectomies require a much higher degree of surgical skill, therefore usually being passed to a surgeon.
Ergo: fee lost altogether for the gyne.

Why we are subjected to the mutilating procedures we are, we women, is often not anything to do with a medical reason.

[Jeanne]

Pony--thank you.

Did you read my post about Liz, the woman who writes As the Tumor Turns?

Here's the link. I think you'll appreciate what she has to say.
http://www.assertivepatient.com/2007/01/the_first_annua.html

And good for you for standing up for yourself. Surgeons as a group are scary to me. I try to stay away from them.

Jeanne

[Matt]

My mother would have liked you and this blog very much. My thanks, from her and me.

[George]

I just wanted to say hang in there. I moderate a group of Merkel Cell Cancer survivors, being one myself. It is never easy in the face of a cancer that has no cure.

George

[Tiffany]

Wow! We have the same brain, different disease process! I am so sorry to read about your struggles but am so gratified to see another patient take control of her healthcare. Kudos to you. I have written a similar piece on my blog and I have directed you to it below.
http://sickgirlspeaks.blogspot.com/2007/03/squeaky-wheel.html
All the best to you. I hope it's ok to link you!

[Quest]

FYI... another resource:

Fifth Annual Survivorship Series: Living With, Through and Beyond Cancer Part III: Finding Hope and Meaning After Treatment Telephone Workshop

Date and Time: Tuesday, June 19, 2007, from 1:30 to 2:30 p.m., ET

Place: Nationwide

For More Information: http://www.cancercare.org/get_help/tew_details.php?tew=survivorship_061907&ret=%2Fget_help%2Ftew_calendar.php

Telephone Education Workshop Details

The Fifth Annual Survivorship Series: Living With, Through and Beyond Cancer Part III: Finding Hope and Meaning After Treatment

Sign up for this Telephone Education Workshop now.
Topic: Emotional Concerns
Cancer Type: All Cancers
Date: June 19, 2007
Time: 1:30 p.m. - 2:30 p.m. ET

Presented By:

Susan Leigh
BSN, RN, Cancer Survivor, Cancer Survivorship Consultant
Keith Bellizzi
PhD, MPH, Program Director, Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, NIH, DHHS
Suzanne Lechner
PhD, Director of Psychosocial Support and Research, Braman Family Breast Cancer Institute, UM Sylvester Comprehensive Cancer Center, Assistant Professor of Psychiatry, Miller School of Medicine, University of Miami

Presented in partnership with:

* National Cancer Institute
* Lance Armstrong Foundation
* Intercultural Cancer Council
* Living Beyond Breast Cancer
* National Coalition for Cancer Survivorship

* This program is supported by the National Cancer Institute and Lance Armstrong Foundation.

CancerCare, Inc. - 275 Seventh Avenue - New York, NY 10001
212-712-8400 or 1-800-813-HOPE (4673) - info@cancercare.org

[jeanne]

I left this comment, although I trimmed it down quite a bit.

Also, an observation: This is not a program geared to the needs of people like me. I will NEVER be done with cancer treatment, and thus, by this group's definition, never reach "survivor" status.

Jeanne

[Carver]

Hi Jeanne,

I'm glad you put this post back at the top for a while. Perhaps it has always been here and after reading it the first time, I have been looking down rather than reading it again. For some reason, I read it again today and I think that it's an excellent piece that encapsulates what it's like to be a cancer patient. You also do a great job in summarizing why it's important to take charge of your own care. I'm glad I read it again. I hope you are able to take some walks and garden a bit. Thinking about you, Carver

[jeanne]

Carver--thanks! This post, or one very similar to it, used to be at the top all the time. Then I thought people might be getting tired of it ... but then I realized that I have a lot of new readers, so it's back up again, for awhile.

Jeanne