I think part of wanting to know why i got cancer was so I would know how to stop it coming back. Its to try to get that sense of control back... that there are things I could do. But then it can become a stick to beat oneself with.... if there WAS something then I SHOULD have done it and didn't.
Even if I managed to get my brain around all of this and work out it wasn't my fault, unfortunately other people havent and can still make comments to suggest I brought it on myself. Or that unless I "stay Positive" i will bring a re-occurance upon myself.
There can be a lot of blaming and judegmentalism...like I need that as well when I've got cancer to deal with already, thank you!

Some things have no answers.
Some things cannot be fixed.
Much as we do have a lot of control over our lives, some bits are exempt.

hence, the saying about the courage to change the things we can, being granted the grace to accept the things we know we cannot change and the wisdom to know the difference.

Sent by JJ | 8:01 AM ET | 03-27-2007

Dear Leroy,
I appreciate your effort to reassure the many, many folks who ask themselves that question ("What did I do to cause this?"). I do think this question is ultimately beside the point, but I think it's an important question nonetheless. When humans experience things that are outside of our control, it's a natural part of the process of acceptance to ask this question. Was there any way I could have prevented this? In a strange way, it can be reassuring that there might have been something we could've done to prevent it. At least, then, it was something that could've been controlled. It's difficult for most of us to face things that are utterly beyond our control. Asking this question is really an attempt to make the fact that we got cancer controllable. Nothing we do now can turn back the clock; but maybe there was something we could've done. Maybe people we love can do those things now so they won't get cancer, so they won't get sick and die.

Death is the ultimate loss of control. We can hold on tight and close our eyes. Or we can throw our hands up in the air, scream our lungs out, and give ourselves over to the ride.

Sent by Julie Buchinski | 9:31 AM ET | 03-27-2007

i will never be a "why me" "shoulda ,woulda, coulda"..type of a person! such a waste of time ,in my opinion. it's not that i "accept" my cancer..quite the opposite, i am doing everything to rid of it. i may be rid of it physically but i know that i will never be rid of it emotionally. so in a way i am contradicting myself,,,,i have "accepted" my cancer as a God given grace...i do not understand the reason why but i have faith that God will show me the reason i have this cancer..i must just be patient.
like so many others, i did not do anything to fit into the medical system that says "oooh she will have breast cancer by age 50". quite the contrary...i never smoked, i am extremely physically fit and very diet "aware"..so what was it that gave me cancer...who knows...i don't care anymore about the whys! i only care about the cure!

Sent by marianne dalton | 10:16 AM ET | 03-27-2007

It's a tough one with the genetics. That's what besets my husband, his brother, mother, aunt and uncle (now all deceased). A nasty little syndrome called HNPCC that likes to make polyps throughout your colon, digestive tract and often ovaries. What can you do? Well nowadays, get tested so you know whether you for sure have the mutation and it starts its evil business most typically in your 40's. And you screen, screen, screen for polyps and force docs etc. to be agressive in their testing protocol. So, why haven't we had our 13 year old daughter tested as yet? Largely because while her father's busy struggling and surviving so far (just barely) about the last thing she needs is to hear that one day, she may well be going through the same. There's really not a blessed thing she can do other than vigilance after a certain age. Well, we can hope there's a more definitive cure by the time she's older. Smoking or not, roughage or not, wheat grass or not, this is a relentless, nasty cancer and we just got unlucky.

Personally I get kind of angry when people ask me about it because inevitably there's some shred of what we/they did wrong that they will do right. Nope -- unless you count being born.

Sent by Teri | 11:16 AM ET | 03-27-2007

Leroy, I am the only person in my family that got cancer. It is not hereditary and I did and do smoke. So, of course everyone blames smoking. Why then do so many, many people get cancer that never smoked and why are there so many people out there that smoke and never get cancer? There are a lot of them too, believe me. I would like to see a survey done on this, how many smokers never get cancer vs. those that do. I agee that "why" is unimportant. Right now I am struggling with my recovery. I can't stop concentrating on what I have to do to continue living, I know I should be happy to be alive but it is so hard to accept this new way of living. Of all that I've gone through, nothing hit me as badly as this cancer. I know I should be concentrating on what I do have but it's so difficult for me to get to that point. Any suggestions from anyone are greatly appreciated. I used to be such a positive person but this time it's not working.

Sent by Ruth White | 11:26 AM ET | 03-27-2007

I prefer the distinction of not being responsible for having a disease, but being responsible to the experience of living with the disease. To me this means focusing on the treatment of the day and what I have yet to experience and offer others, not dwelling on what I did to get in this perdicament. Living with cancer is now woven into the fabric of my life, part of the whole. I will be remembered for this, and I am so much more. I accept this teacher.

Sent by Joan Schatz | 11:47 AM ET | 03-27-2007

I've said it many times. "Why" is none of my business. I could ask why did I get breast cancer till I die, and still come up with only wrong answers, and drive myself bats in the process. You're exactly right Leroy. Ask it once, preferably in the oncologists' office, and move on to what next. How. How do I treat this? How can I take better care of myself physically, emotionally and spiritually? How can I still do the things that make life meaningful to me? The question isn't why, it's what do I love, and how do I get more of that into whatever time I have, be it long or short.

Sent by Nancy K. Clark | 11:53 AM ET | 03-27-2007

Leroy,

There are some things we can do to have SOME control over getting cancer. Smoking puts us at risk, asbestos, etc. But for the most part, it seems to me to be just a natural bodily occurance that we have absolutely no power to change.

I HATE not being in control of what happens to me and I think a lot of us are like that. We feel betrayed when we've been good little girls and boys and bad stuff happens anyway.

I don't believe life is fair or unfair; it just is and we have to do our best to play well the hand that is dealt to us.

You are one of my shining examples.

Sent by Diana Kitch | 12:21 PM ET | 03-27-2007

When I was first diagnosed, I was asked by several different doctors if I had been exposed to benzine. I'm not even sure what benzine is or where I would have been exposed to it, but it leads me to believe that it could cause pancreatic cancer in someone with none of the risk factors. I don't think I was exposed, or if I was, it was unwittingly, so I feel blameless. It is just life and my unlucky roll of the dice. What is up to me and under my control is how I respond to it. At least, that is what I like to believe.

Sent by Stephanie | 12:35 PM ET | 03-27-2007

I am taking psychology in college and my teacher told me that one of my assignments was to listen to NPR. I really got intrested in your blog and have now put you on my email recieving list. I had a grandmother that had cancer and the doctors found hers too late and they wasnt anything they could do about it. I am glad that things are working out for you and I wish you the best!

Sent by Karmon Schenck (NC) | 1:14 PM ET | 03-27-2007

Benzene is nasty stuff.

Terry was from a small town, and when we'd go back to visit I'd always say "ahhh...smell that benzene in the air!" He always said that was how he knew he was home.

His uncle dropped dead suddenly in his 40s. His aunt died of an easily treatable cancer in her 50s. His dad died in his 60s of brain, lung and liver cancer. And Terry died last month at 46. I have always been convinced there's something environmental at work there.

Benzene info:

http://www.cancer.org/docroot/PED/content/PED_1_3X_Benzene.asp?sitearea=PED

Sent by Bruce | 1:42 PM ET | 03-27-2007

So, here I am, having "passed" two PET scans, and my cancer marker in my blood test is going down, and I am admiring my new "chemo curls," and then the news about Elizabeth Edwards breaks. The announcer on NPR says that once it is in the bones, there is no cure, only treatment. My recurrance was in my bone. So, do I have a lifetime of cancer treatment ahead of me? Then today, the word comes that the president's press secretary, Tony Snow, has had a recurrance of colon cancer, this time in his liver. Now, my co-worker tells me that her mom, who has been cancer free for a decade, is having a full-body PET scan today, as something suspicious showed up on an MRI of her brain.

Will I get to be an old lady? Will I get to play with my grandchildren? This has been my goal since I was first diagnosed with breast cancer. My eldest son is graduating high school this spring, and he has instructions not to be in a big hurry to present me with grandchildren. Will I get to play with them when they do come?

I was lazy about my breast self-exams, and I found my lump accidentally while sitting on the toilet. By the time I had my mastectomy, I had six positive lymph nodes. I don't know what caused it, but I could have found it sooner. Guilt is something I wrestle with, but my friends who work in the field and my doctor tell me that even women who do the self-exams still sometimes get breast cancer.

I sign off my updates to my friends and family with "Get your mammograms. Do your self-exams." I have one friend who caught her lump early, and did not even have to have chemotherapy. This is why this has happened to me. At least one person has caught her cancer early enough.

I have rambled enough. It is not a good day for me, though I am, for the moment, cancer-free. For that, I am thankful.

Sent by Ruth from Virginia | 1:49 PM ET | 03-27-2007

Ruth:
A friend who had lung cancer several years ago also had difficulties dealing with it. His Doctor added to the difficulty; he told him it was his fault for smoking! Talk about a Doctor putting a curse on a patient.
Fortunately,my friend was helped by attending our support group, talking it out always helps. Also, if you can find a "Mindfulness" or Meditation class it could help focus your mind on positive thoughts. I know these suggestions work; I have seen many cancer patients come out of their "funk" using these techniques. You can count me (prostate) and my wife (breast) among them.
Hang in there, you'll make it!

Sent by Don Winslow | 3:46 PM ET | 03-27-2007

I was so rattled by Elizabeth Edwards cancer reoccurance because it seems so unfair and hasn't she suffered enough and why can't she be one of the lucky ones who move on after treatment to remain cancer free. Maybe because I just finished four months of chemo and six weeks of radiation and two surgeries and numerous biopsies (another today) that I feel so vulnerable myself. I think I am feeling massively sorry for myself and asshole tightening scared. I have always lived in fear of something; losing a job, my kids dying, my husband dying; me dying. Cancer did me a favor in that it made me know what to be afraid of. So when I watched Elizabeth Edwards explain her determination to keep on keeping on, I realized that if it turns out I am one of the lucky ones, I better be worthy of it.

Sent by Jessie | 4:22 PM ET | 03-27-2007

I have to confess that I didn't ask "why me" - but only because I had always believed in the randomness, the capriciousness of cancer. And maybe I was in too much of a fear-induced fog to ask a question whose answer really didn't matter. I know for certain that I could not have prevented my cancer, or detected it any earlier. But what I have found disturbing is the notion - usually expressed by a well-meaning person who seeks reassurance - that I (we) cause our own cancers. That if we only believed right, did right, ate right, meditated right, we would be cancer-free. At first glance, I thought this was just another one of those annoying blame-the-victim perspectives on life's misfortunes. But one of my sons sent me a wonderful quote from Max Weber that said, in essence, that those who are fortunate (or well) need to believe that the unfortunate (ill) somehow deserve their fate. Because if that is true, the fortunate (well) person clearly deserves to remain fortunate. So, in some odd way, those of us with cancer (I cannot bring myself to say "courageously battling cancer") can make those without cancer feel that each deserves what they got. There's a bit of that same philosophy in the self-help industry ("The Secret") and, in the context of cancer, I find it arrogant, hurtful, and sadly misguided.

Sent by Marcia | 4:39 PM ET | 03-27-2007

To Ruth White,
Thank you for being so honest about your smoking--I know a little of what you must get from other people now that you have cancer. My mom smoked, and smokes, and is dealing with recurrent cancer. She is not proud of the smoking, she knows it may have been a factor in her cancer, she knows she should stop. But there are many other parts to her, including stubbornness and a desire to be in control==both aspects of her personality that have helped her get through an awful lot of treatments, surgeries, pain and stress that most other people couldn't. Each person is a complicated whole, and the reasons we do the things we do are just as complicated as we are. I believe life is a process of trying to come to know ourselves, and it is an endless task since only God can truly know us. Still, we try to get as far as we can. I like to think in the next life we get to compare notes with God, and the further along we get on Earth, the more interesting the conversation will be!

There are probably many reasons for your smoking, and many reasons other than smoking that you are suffering from cancer. These will remain mysteries, probably. Decide which mysteries are worth reflecting on, and which are better left alone. It might help you move forward.

I will you luck and healing.
crow

Sent by crow | 5:15 PM ET | 03-27-2007

I have been treated for breast cancer with surgery and chemo and still have lingering side effects. The support of my family - my daughters who raised money for me and became advocates, and all the people who prayed for me is what got me through. The heartbreaking thing about cancer is that is changes everyone around you and that it destroys peoples lives financially. It's great that money is donated to research but no one talks about how regular people lose their jobs and homes and savings to continue living. I guess that's why they are called "survivors". I hate that word and I hate the stigma attached to cancer. I hate the fear of reoccurence that we all live with. I want to live a "normal life" again.

Sent by Vicki | 6:58 PM ET | 03-27-2007

While I will probably never know what the true cause of my colorectal cancer is, frankly, it's not all that important to me right now. I have volunteered to participate in a study to help identify genetic versus environmental/lifestyle contributions to colorectal cancer - I will let the researchers sort this out. I strongly encourage all of you to participate in these kind of research efforts if possible so that our experiences can be used to further advance early diagnoses.

I do have a slightly different problem with the "what caused my cancer" question. While I am not so much focused on answering this question right now, I have friends who are determined to pin it on some possible exposure to unidentified toxins in the environment or my diet/lifestyle. I genuinely appreciate their concern, but at this point in my life (however short or long it may turn out), I'm probably still going to have a decent cheeseburger now and then as my reward for making it through another round of treatment.

Sent by Bob Maimone | 7:30 PM ET | 03-27-2007

I have been haunted a little since my diagnosis of breast cancer that it could have been caught sooner if I had been getting yearly mammograms like I was supposed to. My first mammogram was at age 45 after finding the lump under my arm that was a swollen lymph node. I have never asked my oncologist the fifty million dollar question "what if I had gotten a mammogram one or two years earlier - how much of a difference would it have made?" because it seems unfair to ask her a question with such a tough answer. I try not to dwell on the unanswerables, but they do pop up from time to time, usually at 3 AM.

Sent by Gretchen Hoag | 7:34 PM ET | 03-27-2007

I think the worst part of reoccurance is the added loss of "hope for a cure." Yes, it is possible to once again be NED, but it certainly shakes some of the "I can beat this" self talk.

My husband, 50 with colon cancer and liver mets has finally reached the last of the FDA approved chemo drugs, the second round of radiation has distroyed his rectum and tailbone, and there are too many tumors in the liver for RFA as you had. All that is left now are Phase I trials, or pallative care...not much of a choice.

For the last year, I, the caregiver have stayed as positive as I can, but I have to say the truth is beginning to wear me down. You were right yesterday, Leroy, when you reminded us that "some things can never be fixed." Oh! for the days when I believed they could.

Sent by Nikki | 11:09 PM ET | 03-27-2007

Stephanie,
There's Benzine (see comment above from Bruce) and there is Benzene, which I believe is in perfumes. Perfumes are full of carcinogens, btw. I don't spray them on my skin anymore.

Skin Deep is an credible website. I've looked up personal care items (soaps, shampoos, cosmetics, hair dye, perfumes, etc...) and filled up a trash bag. A carcinogen score of 3 and up (5 is max) and its out of my life.

Boy, we sure live in a toxic world. Enviornment, products, our food, medications, even our water supply. Its depressing.

Sent by Laura | 4:49 AM ET | 03-28-2007

Years ago there were some books that implied or outright stated that we caused our own cancers by not dealing with our personal issues effectively. Someone sent me those books when I was first diagnosed in 2001 and after reading parts of them, and getting thoroughly depressed, I set them- and the notion that I in some way caused my cancers- aside. It really doesn't matter how I got cancer, it's more about how I'm dealing with it. My experience and my knowledge of my cancer will help those around me by increasing their vigilence and getting their screenings done. My daughter and sisters and niece will monitor themselves closely so they might avoid what I am going through. Really, when you get down to it, it's a crap shoot. And genetics plays a bigger role than any of us know now.

Sent by elm | 7:19 AM ET | 03-28-2007

To Gretchen and Ruth,
You both speculate about whether not getting yearly mammograms or being "lazy" about self examinations led to your breast cancer being more advanced than usual at diagnosis. Well, I had annual mammograms for the last 20 years, including one just three months before my diagnosis which showed no evidence of any problem! And I also tried to do regular self-exams. What happened? Suddenly one morning, I noticed what felt like a hard ridge, like a muscle, across my breast. And it was Stage III Breast Cancer, had spread to several lymph nodes already! Go figure...I'd say it's a waste of precious time to blame yourself.

Not one of my relatives or ancestors (as far as we know) has had cancer. I've always been healthy and reasonably active. Mostly, I eat a healthy diet. My parents ate lots of bacon and eggs and beef and butter and such. They lived to be quite old with no sign of cancer.

By the way, I too hate the frequent, inane comments about how important a good attitude is. People mean well, no doubt, but that's just ignorant and insulting!

Sent by Doris | 10:55 AM ET | 03-28-2007

Ladies,
Here's a few great breat cancer information sites, that helped me:

(my own research led me to these)

John Hopkins website under services "ask an expert" - great to research using a key word or two, you'll read a patient's ?, and the specialist on breast cancer reply.

Cornell University - they have enviornmental reports and so forth linked to breast cancer research.

Oxford College has some good stuff too.

Breast Cancer Action Fund is a great website, and they are also the proud owners of "Think Before You Pink" (the marketing, non-profit deception in the market place). Using the pink ribbon for warm fuzzies and profits, not for helping women. This is not your usual BC organization, they are proactive.

Eviornmental Working Group (owners of "Skin Deep" website, has great information on pesticides.

I found the more I learn, the more in control I feel, and I can protect myself going forward.

Sent by Laura | 2:52 PM ET | 03-28-2007

I'm not sure what the protocol is on this blog for responding to each other, but I had to write back and thank you, Doris! You don't know how much your comments meant to me - I really had just assumed (since I never asked my doctor) that an earlier mammogram definitely would have caught my cancer sooner. And it's not like I've spent a lot of time beating myself up, but it is useful to know that it might not have made a difference at all - gives me a little peace of mind.

This is probably a good time for a quick note of thanks to you, Leroy, for creating this wonderful world of support. Reading your daily insights, and all the incredibly helpful/insightful comments from other members of the club has brought a little island of sanity to the otherwise crazy place called cancer.

Sent by Gretchen Hoag | 2:59 PM ET | 03-28-2007

John Hopkins Avon Breast Center is the search on google. Under Services on left side, "ask an expert". This was a fantastic source.
http://www.hopkinsbreastcenter.org/

Breast Cancer Action
http://www.bcaction.org/
http://www.bcaction.org/Pages/GetInformed/FAQCauses.html

Cornell University
http://envirocancer.cornell.edu/factsheet/Factsheetalpha.cfm

And ladies, The plastic coding on the bottom of plastic containers, isn't just a recycling code, it tells you something about the type of plastic used. The American Plastics Council's website is a good place to start some research. Plastics have been linked to Breast Cancer.

Its a freak'n jungle of carcinogens out there.

Sent by Laura | 11:28 PM ET | 03-28-2007

This comment is meant for crow: Thank you so very much for your wonderful words! This is the first time I've heard such positive comments about my situation since Leroy's. Leroy, once again, as Gretchen said too, thank you for this blog so we can reach out to each other as well as you. Bless you.

Sent by Ruth White | 9:57 AM ET | 03-30-2007

Wow! thanks for all this information. I think my biggest fear is not having children. and not finding a man that can accept me. I was diagnosed with cancer when I was 22 and I already had one ovary removed in childhood. I didn't get to finish college with my friends. but i did get back to it later.

i get sad and angry often. at 22, with no hair, and second major operation of my life, I felt like dying and I hated all my friends for having normal lives. but the same time that I was stuck at home feeling sorry for myself. aliyah died in an airplane crash. we were the same age.

I mostly try not to think about cancer except to eat better and do all the things I said i'd do but never get to. but i am blessed still to be alive. I am 27 now and working towards a nursing degree. it was not a doctor who found my cancer. my doctor said my tests were all weird but said i was ok. (figures, it was a man) but a female nurse said i felt bloated and sent me in for a bunch of tests. i want to work in a clinic and have support groups, esp. for young people dealing with cancer, and immigrant women dealing with cancer.

I'm happy with how i've pushed myself to do many new things. cancer kind of woke me up to the life i want to live.

i do sometimes wonder what i can do better. germ cell cancer is a mysterious thing, and there is not much advice anywhere for me. if anyone has information. I would love to hear from you. thank you everyone for sharing. remember to eat and laugh lots.

Sent by stella | 12:16 AM ET | 04-03-2007

My name is Curtis Mozie,Mr. Leroy Sievers I want to first thank you for
sharing your experience with cancer I
think that your testimoney will help others going thru the same thing keep
your head up, On the second note I would like to personally thank you for
what you did for me and my mission on stopping the violence, at the time you
were working at nightline as the executive directer at which time you allowed me to show and tell the world my story about my friends that were being murdered in dc and I had them all on video tape when they were alive and
enjoying life then I show them after they were shot on the streets, then I would video tape them at their funerals.That show which aired in Feb. 03 "Bearing Witness" touched many peoples lives after they seen the segment, enfact I have just completed a book about my time with you guys at nightline which I havent pulblished yet. but still I owe you much love for
letting me Tell and Show the world my story, Thanks a lot, your a good man and that's why I spoke highly of you in my book that will be released in the near future stay strong and remember..
Your Love and caring heart for other people by you letting the segment air have touched thousands of people across the world "Bearing Witness" Your actions has blessed many and for that God will bless you, thanks again would
like to hello to you if I can Peace c-webb....

Sent by curtis Mozie | 5:15 PM ET | 04-09-2007