A doctor’s letter to a patient with newly diagnosed cancer

Dear “Robin,”

Nothing in my career in medicine has prepared me for being a friend to someone with such a terrible disease. As a doctor I dispense advice on a daily basis, but those interactions remain strangely impersonal. With you, cancer has invaded our inner circle, and we all share your shock and despair.

No one can know exactly what it feels like to be facing serious cancer, unless they have been through it themselves. Your doctors will not know, the rest of your family will not know, neither will your friends. So please forgive us if we do not understand or get things wrong. It is as much a learning process for us as it is for you.

But there is a vast resource out there of people fighting the same disease who do know what you are going through now and will have to battle in the future, and I suggest you get in touch with them. ACOR.org is a good starting point. You will find a wealth of knowledge here that most of your doctors will not have at their fingertips. The contributors do so voluntarily, are available all the time, know all the latest advances in treatment, and will not fob you off when you ask difficult or “silly” questions. These folk can become friends together in crisis in a way that we cannot be. Use them. I know they will welcome you with open arms.

Get to know your disease from reputable sources. Being forewarned is being forearmed. You can react to new situations earlier, giving your doctors better chance of helping you through crises.

You probably have already looked at the survival statistics of your cancer. I agree they are frightening. But figures alone do not tell the whole story. No one knows exactly what is going to happen with you. Don’t let the figures get you down. Take one day at a time while you fight this disease, be grateful for each completed day, look forward to the next one. Remain positive. Your state of mind alone can make the difference in being in the percentage of people who survive.

If I had your diagnosis, this is what I would do.

I would organize my life while I am still fit, making sure my will and business dealings are all sorted out so that I do not need to worry about difficult decisions while I am unwell.

I would prepare letters or video presentations for my kids for important events in their lives – graduations, 21st birthday parties, weddings. At the same time, I would make it my goal to try to be there for the earliest celebrations. Having goals like that would help me push through the rough times. If not, I would be there in person for them with a message as real at the time as at the day it is recorded. I know my family would be fine – my friends and other people important to me would make certain of that.

I would keep a journal, noting my fears, angers, insecurities, tribulations and triumphs. I would record my goals here, and celebrate each one as it is reached. I would go back to the earlier records regularly and see how far I have come, and how my responses to the disease have changed.

I would do the things I have always wanted to do while I am able. Skydive, bungy jump, go on a cruise. Start writing a book. Stop putting off doing things that seemed too selfish. Live my life a bit more, but involve my family so that we create memories together. I would make my marriage the best that I could with whatever time I have left.

I would answer to the best of my ability any questions I have about life, death and spirituality, seeking help and advice where I need it.

And then I would get on with my life, living it as normally as I could.

Robin, cancer does not define you. You are not your disease. It may take its toll, but there is no shame in it, no reason to hide.

I do know this. Many people fighting serious disease live more complete and meaningful lives with the time they have left than people who live to old age. They leave a legacy behind that we all should learn from and try to copy. I know you will do the same.

With love,

Martin

Martin Young is an otolaryngologist and founder and CEO of ConsentCare.

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Comments

http://secondbasedispatch.com Jackie Fox
This is not only incredibly beautiful and compassionate but practical too. I think you’re going to help more people than just your friend by sharing your thoughts. I wish your friend the best.
http://myheartsisters.org Carolyn Thomas
A beautiful, heartfelt and helpful letter, Dr. Martin – THANK YOU for this. I couldn’t help but wish that all physicians could express this kind of deep empathy with patients who are NOT their personal friends, those not in their “inner circle”. For patients, catastrophic diagnoses feel just as catastrophic whether they know their docs socially or not. But for doctors dealing with patient after patient after patient, the same diagnosis can feel more like merely the 10 o’clock appointment.
When I was at Mayo Clinic following my heart attack, a wonderful cardiologist there observed: “We are focused mechanics. We are very, very good at what we do – but sometimes we forget that there is a whole human being attached to this organ.”
It would have meant so much to me had my own doctors sent me a profoundly wise letter like yours.

Penny
Oops, don’t think my comment got posted. Anyway, I think the statement about forgetting a human was attached to an organ was very funny.
A few years ago a dear friend got flesh eating disease in the worst place possible — her butt. One day a whole team of doctors stopped by to look at her case and started talking about it. She had been in the hospital for a long time & wasn’t expected to live.
Having a good sense of humour, she said, “oh, by the way, my name is _____. Her sense of humour is probably what kept her alive. She even made the medical .journals.

Suzanakm
A wonderful letter-
A couple other resources worth referencing:
1- http://www.1000memories.com – a means to co-create and collect those stories, videos, pictures, music.
2- http://www.engagewithgrace.org – to help guide those tough discussions about those difficult decisions that only get harder when we are unwell.
3- http://www.mylifeline.org – a free site for patients with cancer to create one’s own blog/webpage and find support groups.
http://www.healthnutritionltd.co.uk Catherine Gladwin
We’re warned against getting to emotionally involved with our clients and that’s practical advice but you’ve got to care! It makes all the difference. What a lovely letter.
Helena Vidaurri
Dear Dr. Young:
I read your letter with much attention and care, and this is what it says to me:
You aknowledge your own humanity and point to your own true knowledge in life and in medicine in a very humble and solid way
You have managed to be in two places (or more) at the same time: the advising physician, the supporting friend, the informed travel guide…
I thank you for sharing this fragment of you, as physicians we often hide from fear into technicalities and you have firmly and lovingly guided your friend being as human and empathethic as you can be.
I take good note of this, this is a way of being a better person and physician
http://www.consentcare.net Martin Young
‘Robin,’ the inspiration for this letter, has been a friend for many years, and occasionally my patient too but for unrelated issues. I am not the current treating doctor for this cancer, and I write not as a treating physician, but in collecting my thoughts in fulfilling the role of a friend who cares.
This letter is a generalisation and summary of my contribution to our private communication to date.
I asked myself, if the comments determine that this is good advice, why limit it to one person when perhaps others could benefit from it too?
So I submitted it to Kevin as a post. Now I can provide a reference for all my own patients to go to when they need it, with demonstrated support in the comments. Others may find it useful in that manner as well.
Thanks all for the positive comments so far and the useful links! I will definitely pass them on!

http://myheartsisters.org Carolyn Thomas
I’m very glad you submitted this piece! Replace the word ‘cancer’ with virtually any chronic and progressive disease diagnosis and my guess is that it is equally applicable. THANK YOU for this!

http://acor.org Gilles Frydman
Thank you Martin for this beautifully practical post. Thank you for helping cancer patients to connect to our system of online communities. For the last 16 years I have been constantly reminded of the great sense of power they provide the new members. Discovering that “you’re not alone” following a devastating diagnosis of cancer is transformative.
It is becoming clear that every cancer patient is basically suffering from a rare disease. Connecting to large communities of highly educated patients suffering from the same diagnosis is, IMO, essential due to this fact. The chances are pretty high that you’ll receive information from these patients that will help you get a better grasp at the individual nature of the diagnosis and prepare you to find and obtain optimized care. A cancer diagnosis is just too complex to rest on the advice of a single person.
Melanie
Yes, this is a heartfelt letter written out of love and concern. The evident compassion is its main value. But, as a person with metastatic cancer, let me offer another point of view about letters like this.
Unless my friend or family member actually asked, “What would you do in my position?” then I would not heap advice upon someone newly diagnosed with cancer and given a poor prognosis. Much of the letter sounds like a healthy person’s fantasy of what they might do. You can’t really “tell” someone to “get on with living a normal life.” This is virtually meaningless to someone facing death. Is that truly useful? And won’t many of these things occur to the ill person himself or herself as they are ready to deal with them? It’s good to acknowledge that healthy friends won’t really understand, but I’d stop pretty soon after that. Stop doling out advice, and then listen.
Ask questions like: How do you feel about this? (knowing that the answer will change from day to day) How are you coping? What’s on your mind? Say that it scares you, if that’s true. And then really listen. Don’t be afraid to listen to whatever comes up, even if it strikes you as bizarre or trivial or frightening. Just receive it. Don’t smother the sick person with platitudes about positive thinking and making the best of it.
I know everyone wants to make everything better, and offering advice is an attempt to do that. But, in my experience, friends who can listen are the ones you turn to again and again for the best sort of help.
Chrysalis
I thought this was a beautifully written letter. I could tell this person meant something to you. You cared about their situation, and what they were facing.
It is very hard for anyone to express their feelings about something like this. Yes, as Melaine mentioned – I loathed that positive thinking thing when I was going through treatments, and if I’d heard “Well, you look good” one more time, I think I would have lost my sensitivity to their not knowing any better. I wasn’t good.
I agree with Melanie, listening and just letting them know you truly care about what they are going through is so important, invaluable really. While all the world goes on about their business, their world has turned upside down. Being there to listen is one of the most critical things you can do for another.
I, personally, loved the resources you mentioned to your friend. Give them some place to turn to for information and support, their oncologists can only do so much. Online support may be more convenient for anyone weakened by treatments or too overwhelmed to face a group support situation.
Well done, Martin.
http://Www.drmartinyoung.com Martin Young
Valuable advice, Melanie and Chrysalis, thank you. As I said, being both doctor and friend is new territory, and I am likely to get things wrong. But your comments are educational, and I so welcome your input as people who DO know what it is like.
I don’t, yet, but I feel a little closer to knowing. That will help me be a better friend indeed.
Chrysalis
I feel your friend is very lucky to have you as a friend, Martin.
Even those of us that do know what it is like, can miss the mark on occasion. (And here, we know better.) The main thing is, just continue to be their friend, that is a comfort to them.
You’d be surprised at how many “friends” high tail it out of your life, once they hear a diagnosis like this. You find out really fast who your “real” friends are. Great post.
http://www.areli.org Lakshmi
Dear Martin,
Your letter was a great read and very touching. I appreciate your support , kind of compassion towards friend/Patient.
Being a doctor, one got to care their patients, BCZ that makes all the difference to patient.
I read somewhere, a man’s true wealth is the good he does in this world…
Carolyn Lawrence
I am an oncology nurse and work with patients who face unwanted and unexpected diagnoses every day. I admit that when it hits close to home in a friend or family member, it impacts me deeply. This letter from a doctor to his friend is exactly what I want those who are close to me, to know. Thank you, Dr. Young for sharing this moving and insightful letter. I, too, will use it for a reference when addressing these issues.
http://linkedin Vickie Kennedy
I just want to say this is definitely above and beyond. What an awesome thing to do!
Vickie
Bernadette
I must say that this type of compassion will make you stop and respond. If ALL physicians showed this much compassion and concern for the person/fellow human being; people fighting these diseases would be more motivated and encouraged to fight! Continue being the kind of doctor others inspire to be.
http://www.varadh.com/ Varadharajan Krishnamoorthy
Words can heal. Words like yours can heal. What cannot be done by even treatment, I suppose, can be done by doctors like you with words. A real eye-opener. I am sure that I will refer this not only to patients but to all to get a balance in life where we dont know what-is-to-come. Thanks for sharing.
http://charakclinics.com Gaurav
I wish we as physicians remember to have so much empathy for our patients, especially the ones with serious & chronic/ disabling illnesses.
Wonderful post, thank you.
aly
I will choose Dr. Martin Young as my family doctor in a heartbeat. A compassionate and knowledgeable physician is what I need and trust when i don’t feel well. I wish all patients could get access to this kind of personal information about our physicians, its ok to know what degrees they have but we also need to know who they are and what kind of person they are, whether if we feel comfortable with them. I could only trust the life and wellbeing of my love ones to someone like Dr. Young, not some physician who rushes through the appointment, or talks about your insurance coverage.
http://www.butdoctorihatepink.com ButDoctorIHatePink
All of us are dying. Some of us may have been told our expiration date is close, but that doesn’t mean yours isn’t as well. A car accident, a heart attack – death can happen to anybody at any time. We all ought to live our lives as if this is the only day we have. We all ought to prepare financially, and treat our loved ones with grace.
Not everyone can afford cruises and excursions but we can afford a walk to the park, holding hands with family on the way to a picnic in the sun. I don’t think I’ll be leaving behind videos and cards -but I hope to leave good memories and the knowledge that the people in my life were well-loved.
And, knowledge and understanding of the disease process and wheels of medical treatment is important. As a doctor, I hope that you will guide your friend through a confusing realm that she has not been trained to handle. You can translate, explain, encourage and advocate for her. The medical world is slow-moving and confusing to those of us who are dealing with cancer – we don’t know why something takes so long, we don’t know when something should happen, we don’t know what that word on our scan means. Having a doctor-friend to explain, reassure, or even make a phone call would be extremely helpful.
So, I hope that you not only share what you would do, but also share your expertise to help her know what to do.
http://www.consentcare.net Martin Young
Thanks for all the comments, and the lessons learned along the way. They are invaluable!
I have edited a part of the letter to accommodate the great feedback so far:
It follows below:
“You probably have already looked at the survival statistics of your cancer. I agree they are frightening. But figures alone do not tell the whole story. No one knows exactly what is going to happen with you. All cancers have survivors, and you could aim at being one. Take one day at a time while you fight this disease, and celebrate each completed day, for that is an accomplishment in itself. No one can tell you how you should feel. Anger, fear, disappointment, depression, insecurity are all part of the package, and we, as your friends and family, must expect you to be your authentic self. Lean on us when you need us. We’re not going anywhere!
The tragedy for many of us is the missed opportunity to live better lives through our health, let alone through illness. So, if I had your diagnosis, and I don’t, this is the advice I would give myself:”
http://Www.Lymphomajourney.wordpress.com Andrew
Great, compassionate article, almost a checklist that I compared my own approach to. Word pressed it to my own blog.
Lynn
Well written. Succinct. Hits the important points, prepares for the future. And then, as I have with my heart disease, GETS ON WITH LIFE!
Thank you Martin!
Lynn
http://felicitasz.blog.hu Felicitasz
Thank you. I made a Hungarian translation and posted the text on my blog – I did it using the edited paragraph as presented in dr. Young’s comment above – , with links to the original text, logo, link to ConsentCare etc.,
Thank you again.
Chrysalis
Love this, Martin- “No one can tell you how you should feel. Anger, fear, disappointment, depression, insecurity are all part of the package, and we, as your friends and family, must expect you to be your authentic self. Lean on us when you need us. We’re not going anywhere!”
Beautiful!
Nunya
Martin:
You left out something important my oncologist told me about the grim survival numbers: remember, most survival statistics are out of date by the time you see them published, and [in my case] you started out stronger and healthier than most people with this disease.
Also, video messages for the future are not for everyone. Don’t feel guilty or incomplete if you can’t bear to make them. But it is important to talk honestly to your children about what you have, at whatever level they are ready to hear and understand it. Watching their body language and listening to the questions behind their questions will tell you a lot.
Anonymous
This letter is beautiful… I only wish my physician had the same respect for her patients. I was called at work to tell me over the phone “yeh you do have Cancer” here are some names of Oncologists to contact. I was not told what type of Cancer I had and for about a week until I was able to get into to see the Oncologist I thought it was Breast Cancer… when I got there I found out I had Lymphoma. This letter shows me that the physican cares about their patients, no one deserves to get the treatment that I did. I was physically ill and freaked out for a week after the worst 2 min phone call in my life.
http://www.facebook.com/profile.php?id=549756572 Daphne Hollie Huffman
It is touching that a physician would take the time to write such a letter to a patient. Good advice for all of us, but especially for anyone facing the uncertainty of cancer. It can be a difficult, often lonely road.
http://twitter.com/Sabahat61 Syed Sabahat Ali
I believe majority of physicians are attracted to the profession because of their compassion. I just wished all of us could express ourselves as wonderfully and eloquently as Martin.I hope he would not mind if I do use this letter as a basis of my own communications. However,with such a terrible diagnosis I always try to inform my patient’s in person.
http://pulse.yahoo.com/_GTT4QZZ3YGVTME74DM4MQ3OXLY 4paws
Is there a doctor in the house?? I hope that I would be so lucky to have Martin as the one should my time come! What a beautifully well-written and heart sent message we have here, and educational at the same time. As a “CNA”, I have come across a great deal of those unfortunate to have this diagnosis. And, I have to say that knowing and interacting with these individuals has been the highlight of my life. So many wonderful people…”It” does not define you, absolutely. If anything, we become braver with the knowledge of who we really are and in the end surrender with the help of compassionate people like yourself Doc! Thank you!
http://pulse.yahoo.com/_EV4FHCYTDJG6ATJ5AP3PNHQYGM cheryl
Living with Cancer is brutal at times and other times it enables one to accomplish goals in life as Martin so clearly defined. I am a Hospice LVN/LPN in Houston ,Texas. I am faced with the realities of life and how little time we have on earth without a terminal diagnosis. Hospice is not understood by the general public and most physicians. I am not a speccial person for my chosen profession,I am blessed. I was never informed about Hospice as my Mother suffered with unrelenting pain with metastatic cancer. My Father endured pain of Fungal Pneumonia secondary to Chemo for Leukemia. Fortunately, there was a female Resident,Dr. Smith, at Methodist Hospital in the Medical Center in the early 90′s that was so intuned to his needs and our family’s needs,she was able to provide comfort until he received his “Final Promotion” in a safe environment,in a true state of comfort with Dignity. I never forgot her. This is what Hospice is and what Hospice does. Hospice does not” KILL” as a family member stated @ 11:00pm last night as I stood by her dying mother’s bed trying to promote comfort. The daughter wanted continous care 24/7 to promote comfort yet she refused to allow comfort meds to be administered because “that will kill her and I want her to go in her own time on her terms.” I provided emotional support to the entire family and gave a little book titled “Gone From My Sight ” Needless to say,I wasn’t able to provide care to promote physical comfort. Emotional and Spiritual was accepted and truly appreciated by the family. Lead by example.Share knowledge with passion to provide tools to promote comfort which we will all seek at one time or another. Please learn more about Hospice and give that opportunity to those in need. Give the gift of Hospice not in the last hours or minutes of life. Give the opportunity of Hospice when Quality, not Quantity of life is needed. Thank You Martin to providing such a beautiful insight of love and emotions that so often are never revealed because ordinary people just don’t know what to say at a time when it is dark and seems hopless!
http://www.facebook.com/profile.php?id=1288423128 Dodie Grant
Cancer may try to kill….but all it really does is to emplify the most amazing, purest, tuffest examples of how deep the human heart is and display the epitome how determined love is. Cancer didnt “take” my son….he offered his body so cancer could eat itself to death. My son Bradley, is…and will always be…..my son. The closeness we achieved during his battle is something that NO parent would ever want to gain….but every parent should wish to have. Big question is…..what the haities is stopping you????
Cancer is not my son…..and holds no power to diminish him OR reduce his last remaining time on Earth as 100% factual nonsence. Bradley only dealt with cancer for less than 8 months (with a feverish vengance, I may add!)……so who be me to drag that longer OR give cancer more credit than it is due???
Bradley was the best…THE BEST! His energy is what will pull me thru when I “think” times are tuff. I will smile, I will trudge through, I will enjoy every second I am given…..and I will thank Brad for showing me how that is done. I will not see him as a Sarcoma patient….which is something he detested.
I am not here to diminish the effects on cancer and how families deal. Simply stated….I’m just here to be what it is you need. Love you Son……will see you and Sissie soon…….not a day goes by where I dont miss you both~