The Importance of Honesty

 
“I want to know what is happening to me, and what my doctors and nurses think will happen to me in the future. I don't want them to use euphemisms or hide any part of the truth. I want it out there, straightforward, no messing around.”
 
 

Today I'm going to stand up for my doctor. A couple of days ago, I wrote about what he said while being interviewed in the chemo room. A number of you wrote in to say that you thought he was wrong to say anything like that. What he said was, "The cancer is going to kill him." Yes, it was shocking to hear that again, but it wasn't anything I hadn't heard before. I think my doctor was right to say that.

First of all, he had my permission to talk about my case, so he wasn't violating any patient/doctor confidentiality. That's not the major issue here. What he said the other day is what he told me almost a year ago when I was diagnosed. And he's right. Absent some amazing breakthrough or miracle, the cancer is most likely what is going to end my life. I think that's more likely than my being hit by a bus or something like that.

What I appreciate the most about him is his honesty. I guess he could have tried to sugarcoat the news — somehow lessen its impact. But that's not what I wanted then, and it's not what I want now. I want to know what is happening to me, and what my doctors and nurses think will happen to me in the future. I don't want them to use euphemisms or hide any part of the truth. I want it out there, straightforward, no messing around.

Hiding the truth or diluting it in any way doesn't help anyone. I know he's right, and I came to terms with that a while ago. That doesn't mean I'm giving up. I'm not. But one of the things I've learned from all this is just how important honesty is. I don't have time to play games. I have other things to worry about. I expect honesty from the people I love. I expect them to tell me when they're happy or sad or something in between. In return, I will be honest with them, even though that can be difficult sometimes.

And thinking about this, I realized something else, too. Even though my doctor said the cancer will kill me, he's not giving up, either. Neither are my nurses. And neither are any of the other patients who were in the chemo room that day. So am I glad he said what he did? I wish it wasn't true, but it is. He was right to say it. He wouldn't be my friend — or my doctor — if he had done anything else.

 

Comments (Send a comment)

I think you make a very important distinction, Leroy, in explaining that knowing the truth about your condition does not mean anyone has given up. Many times, to quote Lance Armstrong, knowledge is power and every patient has the right to as much knowledge as they need. Some patients and families won't want/need the unvarnished truth at all times but that decision should be made by them. It sounds like you have a great doctor and appreciate that fact. Good for you!

Sent by Andrea Clay | 11:29 AM ET | 11-30-2006

I too felt as if I had been slapped when my doctor told me my cancer would kill me. But I am glad he said that, although, at first, I was very sad. Then I began to really concentrate on what was important to me in life. No more time for stupid mind-games, or fair-weather friends. No more time to put things off. No more time to hide from the truth, really the truth for all of us, but especially for cancer patients — that life is too darn short to waste.

Sent by Clarke | 11:31 AM ET | 11-30-2006

From a fellow stage IV colon cancer patient — being realistic does not mean accepting defeat.

I am enjoying reading your entries each day. Thanks!

Sent by Wendy | 11:32 AM ET | 11-30-2006

Leroy,

Bravo and well said. Let's be honest here, something will end our lives because no one lives forever. The hard part of this and any other health issue is dealing with the fact that it could end our life earlier than we had hoped leaving behind family and friends who we know will miss us dearly. From the moment we are put on this earth, we are all on a time schedule. Maybe the bottom line is that we don't want to hear it nor want to face it. Everyone should die quietly, peacefully in their beds late in their years after having fulfilled all dreams and desires of life. Ah, how nice if that would happen to us all. I don't know what lies before me with my cancer or if it will take my life early, but until whenever that will be, I choose to live it to the most I can do and enjoy every little piece. Even on days when I have treatment, I will find something, no matter how small, to be thankful for and keep going. Today is today and I am thankful for every precious piece.

Thank you for a wonderful blog and I wish you well.

Sent by Peggy | 1:27 PM ET | 11-30-2006

I think this was an example of the oddity of being a cancer patient. We are so very strong at times, but the chinks in the armor are there, and then people react strongly.

I just assumed he said that during an interview, and it wasn't something that was done in "normal" conversation.

Sent by Brit | 1:29 PM ET | 11-30-2006

Hi,

My mom has oral cancer and she has gone through radiation, surgery and chemo but nothing dramatic has happened. She has infinite pain and suffering. She is in India in a city called Hyderabad. There was may be one cancer hospital five years back. Now when I go to visit her and take her to the hospital, there are at least 20 hospitals where there are thousands of patients waiting. It is as if the more you know about cancer, the more people have it, as against the more you know or learn the less number of people should have it.

The unfortunate part is though that, the nature of the disease (it kills people), is more or less an excuse for doctors not to try their level best. They are immune to any criticism, it is OK if they do not cure any cancer victim (even though some of them can be cured). It is sad to see so many people suffer, but more sickening to see others not even paying attention to the cure of it or treatment of it.

It is like the death of US soldiers in Iraq, the first death is headline news, the second death is second page news, the third is footnote. So is the case with cancer, dont we have resources to find a cure. I am sure we have, but there has to be passion to find a cure, it should not be a job.

Also I think every youngster who has started to smoke, should be shown a video of a cancer victim suffering, them not being able to even drink a glass of water and may be that will stop them from starting to smoke.

Cancer does not affect individuals, it affects families.

Sent by Srikanth Nandyala | 1:32 PM ET | 11-30-2006

Someone telling the truth to Ted Koppel?! That's a good thing. I understand why you defend your doctor. And I understand why you felt slapped. I did too. I'm not ready to think you won't always be writing this blog. I don't want to lose another friend to cancer. I'm glad you're willing to share your life now. The TV show will be one more sharing. Thanks for that.

Sent by Ann | 1:34 PM ET | 11-30-2006

Leroy —

I love the distinction you make by stating that just because your dr. said you are going to die, it does not communicate a lack of caring, from him/her, for you. We each have different needs for our healing, from the healthcare providers (I keep saying healthcare provider vs. dr. because it is my experience that all of the "players" — receptionist, lab tech etc... affect my healing) and I met doctors during my 2 times w/cancer, that I felt took away from vs. supported my healing. They were not "bad" people, nor incompetent and some had important qualities needed for my healing ... but, the ones that I "fired" were unable to care for my heart in the way I needed for healing to occur.

I am so glad that you feel loved and cared for by your drs. — this is ENORMOUSLY important. We are all going to die, it's just a question of when and how... so, in the time that we have left, I feel one of the most meaningful things I can do is learn how to give and receive love more.

Sent by Linda Resca | 1:50 PM ET | 11-30-2006

I think most people want honesty, though some of us may need time to absorb bad news gradually. If you are happy with your doctor, that's all that matters. In my own experience, I've found there are some doctors who are brutally honest and others who are able to present the facts with a little more kindness and humanity. For instance, my surgeon waited till I was lying flat on my back, eyes closed, wincing in pain as he jerked out the drain to inform me that the cancer had been found in several lymph nodes. He told the truth, which was what I wanted — but it could have been presented in a more caring way.

Then my first oncologist, five minutes after I met him, told me with a nervous chuckle, that it was "Oooh, stage 3 or maybe stage 4!" I felt as if I had been hit by a sledgehammer. After that he joked that "It's always zero percent or 100 percent anyway!" I changed doctors and now have an oncologist who is very honest and direct but also seems to care, to recognize that we are fellow human beings.

I appreciate the difficult job people in this field of medicine do. They probably lose a lot of patients and therefore learn to be protective of their own emotions. I understand that, but I still want a doctor who can be both honest and humane.

Sent by Doris | 1:55 PM ET | 11-30-2006

Leroy, I am with you when it comes to honesty about our cancers. A lot of unpleasant aftermath after its diagnosis arises from the sense that cancer has taken control over victims' lives. I have heard many say that that the one thing that they hang onto is the first that went after being diagnosed with cancer-loss of control. Unless one's career/profession has dealt with this situation, chances are that if struck by its blow, that individual is barely equipped with anything to handle the stress.

Feeling helpless is very hard to accept, but knowing about one's situation empowers the person to act in a manner that goes along with their perception of the problem. The surgeon and oncologist laid the cards and my daughter discussed the plan and strategy with them as though we were poised to go into battle against a much-feared and invisible enemy. Because there was candor and honesty, there were no ugly surprises.

Sent by Edith S. Pleta | 2:15 PM ET | 11-30-2006

When you receive notice that time is short it must be for a reason, I think. Maybe this time is needed to let your family down a little bit easier. I know the shock of losing my best friend and husband would have certainly killed me had it happened in one instant. Perhaps it's needed for closure with your God or other people or some work that needs finishing.

In an honest acknowledgement of my husband's situation, a friend of his recommended the following to him: Pick us out some cool places to visit when you get to the other side as we'll all be joining you sooner than you know. My advice is to put some good music on, kick back, and enjoy the last part of the trip as rough as the old rusty rails will make it. If you get over this (miracles aren't always what they stack 'em up as) and go on to live another 20 years — boy, what a fool I'll be.

Sent by Irene | 2:23 PM ET | 11-30-2006

My 59-year-old mother originally from South Korea and not having the strongest command of the English language sat patiently as her oncologist explained the statistics of survival for people with stage 4 non-small cell lung cancer. She didn't ask any questions but simply stated, "I am going to try my best." The oncologist responded with the same. It wasn't 'til we returned home and after dinner sitting quietly in the living room that she looked at me and asked so softly, "Do you think I have a chance?" I really didn't know how to respond. I repeated what the doctor said: "One year, maybe two," but then I told her, "It really depends on you, mom." Six months later, she is still trying her best. I don't have words to describe the experience. Mr. Sievers does it the best and I look forward to reading his posts every day.

Sent by Mary Hamric | 3:02 PM ET | 11-30-2006

Five years ago, at age 36, I was diagnosed with inflammatory breast cancer — a pernicious, aggressive form, and by definition, already very advanced at the time of diagnosis. My first doctor — the surgeon who performed my biopsy and broke the news to me — was nothing if not efficient in getting me in to see my radiation and medical oncologists, and in helping me to sketch out and understand my treatment plan. For that, I am truly grateful (thanks, John Lundeby, wherever you are!) The entire time I had the feeling this was a do-or-die situation: We start treatment, immediate and aggressive, and I might have a chance, or we do nothing, and I die.

I am here to speak for the efficacy of the treatments I've received (three rounds of chemo, radiation, mastectomy, radiofrequency ablation for hepatic recurrence, and now ongoing herceptin doses), but also to speak for the positive face my doctors have all put on my case. I know this was a put-on because (as is the way in small towns) I have a friend who worked at that doctor's office, after I'd been a patient there. Apparently his reaction, when I wasn't in the room, was, I don't think she's going to make it.

That surprised me, and still is a bit of a shock. I do, of course, wonder how I might have felt had there ever been a hint of doubt or hesitation in his approach. But perhaps that's the "maybe" factor coming into play: "Maybe" she'll live. And so that was all I was ever given to consider: Naybe I'll live. I suppose — no, I know — that when that "maybe" factor is no longer in play, when my drugs stop working, when my disease becomes resistant to whatever is available to treat it, I'll learn that in clear and unambiguous terms. I am under no illusions: Barring a miracle, this cancer will kill me. But I am willing to take another two or five or 10 or 30 years before I succumb. In the meantime, my thanks go to John, to Kent Anderson, to Robert Cooper, Alfonso Oliva, Ryan Holbrook, Janice Boughton, and of course, Mike Rooney. I trust them to do all that is possible to keep me alive and well, and when that is not an option, I trust them to tell me I'm going to die.

Sent by Joan Jones | 3:23 PM ET | 11-30-2006

As a fellow cancer-fighter, I couldn't agree with you more about this. I want a doctor who will tell me the truth, even when its not good, but will help me continue to fight the good fight and not give up on me.

So far my cancer has been treated and is showing no signs of return, but it's a tricky one and I know if it does return, its not going to be good news. I don't need a doctor to sugarcoat that.

I wonder if there aren't big individual differences in this, though. I have always been a person who wants to know the truth, even when it's not something I'm going to like hearing. I've encountered other cancer patients, though, who seem to only want to hear encouragement.

Sent by N. R. | 3:28 PM ET | 11-30-2006

Most people are afraid of the truth, even when it's about little things.

Who said: The truth shall set you free.

Take care and be well.

Sent by Teena | 3:31 PM ET | 11-30-2006

Leroy, I wanted to introduce you to a new online resource portal for young adults with cancer. The Web site is ImTooYoungForThis.org.

Thank you for all that you do to make such an incredible difference in the lives of others.

Sent by Matthew Zachary | 3:34 PM ET | 11-30-2006

Mr. Sievers,

The more of your blogs or postings I read, the more I'm impressed with your courage and honesty. I e-mailed you yesterday but failed to tell you a little about myself. I am 73, female, two children, and retired from the business world when I was 70.

I, like you, demand total honesty and candor from my oncologist, Dr. Elie Saikaly, at the Everett Clinic Center for Cancer. And he has never failed to give me just that. If I must place myself in someone's hands for what is the rest of my life (12 to 18 months diagnosis) then I have chosen well.

Take care of yourself, Mr. Sievers, and thank you so much for your inspired writing.

Sent by Brenda Y. Lynch | 5:58 PM ET | 11-30-2006

Sir,

Most often I listen to your stories on NPR as I drive to work. When I was young, my aunt died of lung cancer and it was very hard to watch that happen. I didn't understand it and I had not the maturity to put myself in her shoes and show my true, deep feelings of love, empathy and sympathy. Now that Im an adult and understand just how horrible her experience was, I regret not having the ability then to really show my support and love as strongly as it existed in my heart. As you speak on the radio, these feelings come back to me in a rush and I offer them to you in your struggle. You give the audience a straightforward insight to how it feels to be in your shoes and offers the audience the opportunity to get to know you as you travel this difficult path. Through that experience, you teach the audience that cancer patients are still just regular human "Joe's," meaning the cancer hasn't changed them inside, in their souls, hearts and minds. You help the audience feel more comfortable in dealing with cancer patients - perhaps ones in their own families or workplaces, etc. Folks they have withdrawn from because they just don't understand or know how to react, how to show their feelings - all of them including the fear, the sadness, the worry... you also let us know its ok to laugh, feel joy and be happy with a person with a terrible illness.

Point is, I wish I had heard your NPR presentations before my Aunt passed - I would have acted different, been closer, been more comfortable and been more natural... No regrets, I know I will see her again and be able to tell her these things myself. Just know your audience appreciates your story and your openness - it helps us all be better people towards all people suffering dreadful illnesses such as cancer.

Sorry for the length... hard to edit with tears in the eyes. Thank you for your strength. God bless.

Sent by Jennifer | 6:02 PM ET | 11-30-2006

Here's a truth for you: You are a very much loved and admired man and much of that is due to your honesty.

Thank you for giving us that.

Sent by Sandi | 6:17 PM ET | 11-30-2006

Leroy,

I have metastatic breast cancer and I am also a physician. I realized how insensitive some of us can be when I became a patient myself. What I learned was that not all doctors have the best bed side manner and are not really trained in medical school how to communicate bad news. I do want honesty but when I am carrying a load like this, I also would want some compassion and care and sadly, not a lot of us seem to have that anymore.

Sent by Aisha | 1:32 PM ET | 12-01-2006

Would I have fought any harder if my cancer was diagnosed as a terminal stage four rather than the stage two I was diagnosed with? Yes. I definitely think I would have fought harder. Anyone would. Would fighting harder help against cancer? That I believe is a pretty dumb question.

I don't think Doctors should ever sugarcoat the truth. I for one am my glad that my doctor did not.

I think of you daily Leroy.

Sent by Daniel | 5:36 PM ET | 12-01-2006

Yes! May the tribe of direct, honest, present-hearted, and supportive medical folks increase! I like hearing the news unvarnished too, while leaving an open door where hope and possibility can do their work as well. The best docs can "go there" with us, and I am so thankful you have a team like that!

Sent by Sarah | 4:26 PM ET | 12-05-2006

Don't forget that none of us get out of this life alive. Cancer patients know what might and in all likelihood will kill them. But what will take the rest of us? What if the cancer patient leaves the hospital, crosses the street, and dies from a speeding vehicle? Most of us will not know when or how we leave this life.

Sent by Leah Wellman | 5:34 PM ET | 12-05-2006

Leroy and readers,

Today is Sunday, Dec. 3. I was coming out of the grocery store, and donated to a HOMELESS AMERICAN VETERANS, Association. The Vet collecting funds told me he has cancer and the VAs budget has been cut, and they will not treat him, so he went to a county facility, and they are helping him some. Bush and Congress cut the budget on these brave and treasured heroes.

If you could see the pain, and heart break in this man, it was so sad, and I felt ashamed I could not drive him to UCLA or USC for free treatment. For those of us who have medical insurance, we should count our blessings (for as long as we can still pay for it).

A veteran should not have any needs not met, especially cancer treatment.

I am an Independent voter — both parties have failed us.

Sent by Laura | 2:53 PM ET | 12-06-2006

I met with my oncologist three times prior to beginning dose dense chemo 11/13/06. and EVERY TIME and yes, I mean EVERY TIME, he felt it nesecary to inform me that my hair was going to fall out — life versus hair — I mean how ridiculous?

Sent by Marianne Dalton | 12:05 PM ET | 12-11-2006

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Leroy Sievers in the Ted Koppel Documentary

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My Cancer will be updated Monday through Friday with posts and commentaries from Leroy Sievers. A journalist for more than 25 years, Leroy has worked at CBS News and ABC News, where he was the executive producer at Nightline. You can follow his story through this blog, his weekly podcast and his monthly series on Morning Edition.

 
 

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