Posted by charles (@charles) · Oct 8, 2013

Should Oncologists Give Cancer Patients A Survival Timeline?

By: Jamie Reno

Last night, Valerie Harper, the beloved comedic actress from The Mary Tyler Moore Show and Rhoda, poignantly danced her last dance as a contestant on ABC’s Dancing With the Stars. But in her real life, she triumphantly dances on.

Earlier this year, Harper, 74, was diagnosed with leptomeningeal carcinomatosis, a rare type of cancer that was found in a membrane layer around her brain. It’s not brain cancer - that part of the story has been widely misreported - but it is a potentially deadly type of cancer.

Harper was told in March that she had just a few months to live.

valerie harper people

Valerie Harper

Seven months later, she’s still alive and well. Doctors say that, to date, she has beaten the odds.

Being told she was terminal clearly lit a fire under Harper, whose brave and joyous defiance of her own predicted demise begs the question: How often, if ever, should an oncologist give a cancer patient such a time-to-live marker?

When I was diagnosed with stage IV non-Hodgkin’s lymphoma, my original oncologist told me I’d “probably live three to five years, at the most.” That was 17 years ago.

Needless to say, I'm not a big fan of survival timelines. But I do understand that many cancer patients want to know. It's a complicated issue.

Dr. William Mitchell, a benevolent oncologist and head of palliative medicine – sometimes called comfort care or supportive care - at the Moores Cancer Center at the University of California San Diego, says there is no written policy at Moores for giving cancer patients a timeline of survival.

But he suggests most oncologists fall somewhere in the middle between giving all of their patients a survival timeline and giving none of them that information.

"As a doctor, I go where the patient wants to go. I will only talk about this if they want to talk about it," he says. "It can be useful information, of course. But it's important for physicians to remember that these are nothing more than educated guesses. Doctors can’t predict the future. By and large, we don’t have the tools in oncology to accurately estimate prognosis, and I don’t know that this is the worst thing in the world.”

So when a doctor does give us a timeline, should we listen, and take it seriously? Yes, of course, Mitchell says.

But should we assume that his or her words are etched in granite and that we have no chance of beating the odds? Absolutely not, he says.

I personally don’t believe doctors should give patients a timeline unless there is some level of certainty and/or the end date is likely very soon. Like days or weeks. And even then, it should ultimately be the patient’s decision to hear this information, or not.

As cancer patients, we can and do defy mortality statistics, which are often dated and do not take into account the uniqueness of each human body or the latest treatments, both traditional and alternative.

I certainly understand and respect that many cancer patients want to have as much information as they can gather about their health and their future. But Valerie Harper isn't the only cancer patient who has defied the odds.

I’ve met literally thousands of people with cancer these past 17 years who’ve lived longer than their doctors said they would.

I am not trying to give anyone false hope. I'm just saying that timelines can be wrong, and that we should all try as best we can to enjoy the remaining time we have in this life, whether it's a month... or 30 years.

What do you think?

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Eric Wassyng (@ericwassyng) · Oct 8, 2013 · #

Like Jamie, I, too, was diagnosed with Stage IV NHL (in 2004). Nobody ever gave me a specific timeline, but I was made to understand that without proper treatment, the the finish line was very close. After lots of chemo, a splenectomy, more chemo, and an autologous stem cell transplant, I went into remission and have remained so ever since. I still have never been given a timeline, and I like it that way. My goal was to get healthy, and that's where I am. I have no need to know how much time is left. The past 9 years have already been a bonus.

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Sue McNeil (@mcneilsue) · Oct 9, 2013 · #

Eric. What a great perspective. It does make sense to focus on wellness and proper treatment. Thanks for sharing.

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Glenda Hicks (@glenda) · Oct 9, 2013 · #

I love your story! Congratulations for outliving the date by 9 YEARS! Actually I think none of us know WHEN we are going to die and/but we are ALL going to die sometime! We have the obligation to live each day as if it is our last and enjoy every precious moment. Loving thoughts from Glenda in South Africa

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Jamie Reno (@jamiereno) · Oct 11, 2013 · #

Very well stated, Eric!

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Jamie Reno (@jamiereno) · Oct 8, 2013 · #

Thanks for sharing your story, Eric. You've been though a lot. I'm so glad you are doing well.

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Carla Hood (@chood) · Oct 8, 2013 · #

In my own case, I was too young to understand the majority of what was going on, because I was only 8 1/2 Months of Age at dx. on January 22 1968 with Stage 4 High Risk Neuroblastoma. After having my Right Kidney & a 2 1/2 pound tumor (the size of a big man's fist) removed followed with chemotherapy (which consisted of 250 shots directly into the tops of both my hands) to dissolve what remained of the cancer on my Left Kidney and the outer lining of my Stomach, I have since remained cancer free. The prognosis my parents were given about me in 1968 was that I was very likely terminal and that was OVER 45 Years ago!

People need to learn that even if a Doctor sits down and gives a timeline, it is NOT set in stone. We aren't odds, percentages, statistics or our diagnosis - because we are individuals, we can't/don't adhere to what happened to others. I would say, all in all, the doctors can lay it out to the best of their ability, but the patient and/or person being told all the information should take it with a grain of salt not as gospel.

Thank you so much for putting this question out there, Jamie!!

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Jamie Reno (@jamiereno) · Oct 8, 2013 · #

So very well stated, Carla. Thanks for sharing your story.

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Glenda Hicks (@glenda) · Oct 9, 2013 · #

Fantastic! I agree with you completely and hope you will read what I just wrote about life is a terminal illness! We are meant to live each moment fully. 45 years beats the 9 years life that Eric has enjoyed! (Just thought I trust Eric DID enjoy them?) I am determined to enjoy every precious moment. Loving thoughts and God's blessings to you!......and all of us! Glenda in South Africa

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Eric Wassyng (@ericwassyng) · Oct 9, 2013 · #

Yes, Glenda. They have been good years. I'm 60 now. My father lived to 91. My mother will be 93 this month. I've plan to beat them both.

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Glenda Hicks (@glenda) · Oct 9, 2013 · #

Eric what fun! We HAVE to keep in contact for the NEXT 18 years which is my plan! May God bless us both AND every one of our CancerConnect friends.

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diane orner (@dianeo) · Oct 9, 2013 · #

i was diagnosed with uterine cancer in june 2009. surgery and NED til jan 2011 when it had spread to all over my lungs and a periaortic lymph node, no surgery no radiation, only chemo was offered. since then i have been on chemo with no more than a 6 month break between cycles. then surgery & radiation were finally offered once the lung nodules became "inactive" and had shrunk. we started out with over 30 nodules. we took out the lymph node and radiated the surgical site. now on very agressive follow up chemo to get hopefully to NED. i asked about how much time when we found the mets in jan 2011. he told me and my family he was not God but had seen pt who beat the odds and some who died sooner than he thought. that said, he said i had monthsif we did no chemo. that was my husbands question. we also looked it up. according to the latest stats i had about a year once metastasized. we did not know if that factored in treatments or not. it is now almost 2014. lots of prayer warriors and treatments etc later. we will see!

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Glenda Hicks (@glenda) · Oct 9, 2013 · #

Diane you have already lived another 3 years! Please enjoy every precious moment. Are you having or doing something good for Diane daily? Perhaps you have a goal for next year? I know that I am blessed with an excellent prognosis AND I invite everybody to my 94th birthday in 18 years time......only if I am living a life and not lost the ability to live. Then I choose death. Loving thoughts and God bless you and keep you safe from Glenda in South Africa

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diane orner (@dianeo) · Oct 9, 2013 · #

I like.

David W. Orner

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helen (@helenmkblower) · Oct 11, 2013 · #

Hi Glenda, I liked your post, especially if only I am living a life, that's what its all about.
God bless Helen

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Glenda Hicks (@glenda) · Oct 11, 2013 · #

I understand what you saying, I think. That as long as we can breathe we can live? I am closing my Daily CancerConnect Digest as we leave little Port Alfred on Monday to travel up to Johannesburg and then after visiting with our 3 daughters and 4 grandchildren we fly off to visit Vietnam and Cambodia. after 23 days we return, see the family again over 3 days returning back to Port Alfred after overnighting twice! Long time away fro home. Home all my friends, especially YOU Helen, will have good news stories for me when I reconnect early in December! God bless you and keep you safe and living!

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helen (@helenmkblower) · Oct 11, 2013 · #

Hi Glenda , I hope you have a lovely time, and look forward to when you reconnect. bon vogue .
God bless Helen

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nicegal (@nicegal) · Dec 15, 2013 · #

Have a wonderful time. I always enjoy your posts so I look forward to your return.

diane orner (@dianeo) · Sun, Jun 21 at 5:23pm MDT · #

Glenda Hicks (@glenda) · Oct 9, 2013 · #

What a deep question. I know they don’t KNOW but know more than we do just as patients. We hear wonderful stories of people defeating the prognosis. I think that I want the facts as known and I will hope to die when I want to. One thing I do know is I do not want a lingering, vegetative state. We put animals down to end their suffering. Humans deserve no less. i know all the problems associated and believe we can overcome them. I have informed my doctor and even written in my will that I am NOT to be kept alive artificially. I want to die with dignity. Loving thoughts to you. Glenda in South Africa

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carol cowan harris (@carolcowan) · Oct 9, 2013 · #

Anytime, except when death is imminent, the prognosis you are given (if you ask) is a MEDIAN number. Half of the people who had your type of cancer died sooner, the other half later. The statistics are old by the time they are given. New medications, like targeted therapies, often show very much promise. Each person's case is unique, it really is. Being compliant, being hopeful, and believing you can fight the fight can affect your outcome immensely. Participating in this forum can help lengthen survival. You are the new set of statistics, you're in uncharted territory, and you may be the ones who rewrite the text books. I pray to God that you will.

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Glenda Hicks (@glenda) · Oct 11, 2013 · #

Thank you Carol. I immediately experienced my anxiety as I remembered being described as non-compliant when I refused the asthma inhaler preferring other remedies that are not toxic. I believe that my osteoporosis was caused by so many years on bronco dilators with cortizone. They told me it was non-systemic. i have know refused the Tamoxifen believing that with stage 1 breast cancer and NO lymph involvement followed by 5 weeks of weekday radiation this is the best for me. I also factored in my age 76 at the end of this month. I was guided by a British report and that the package insert said for use with advanced breast cancer. I would appreciate your input. Glenda

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carol cowan harris (@carolcowan) · Oct 11, 2013 · #

The last thing I want to do is cause any of you brave and determined fighters anxiety. I should have said what I mean by compliance. Compliance is NOT blindly or meekly doing ANYTHING that a health care provider tells you to do. It allows for questioning anything that doesn't seem to make sense, seems inadvisable, or just rubs you the wrong way. A cancer treatment plan must be something mutually agreed upon, between you and your doctor. Your doctor(s) often will use a protocol that has shown the best response for others with your diagnosis, taking into account other conditions and fears you might have. If your doctor isn't listening when you raise concerns, and then making changes in your treatment plan because of your concerns, start shopping for another one. It's your right to question anything and make an informed decision, and it's your right to be listened to. I've said it before, NO ONE cares more about you than you do. The 2 examples you stated - concern about inhalers and refusal to take Tamoxifen, are valid in your case because you've made informed decisions. Being labeled noncompliant, I hope, is just your doctor's way of "covering his ass"! In this age of lawsuits, it happens.

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Steven Schatzkin (@stevenschatzkin) · Oct 10, 2013 · #

Very interesting topic, and well presented Jamie, To me the norm it all depends on the doctor and patient relationship and how much the patient wants to know. Most doctors will respect that boundary. There are always exception to the rule and what the situation is. Example: stage 4 and cancer has spread through major organs, Chemo and treatments stop working, then depending on the patient may want to know the time left.> Most doctors would suggest that to get affairs in order. However, in most first diagnoses and you are not end of types of treatment then hold the information unless the patient request it. As with each patient medication effects us different , same with emotional issues, and dealing with the diagnoses. So the doctors should practice good bed side manners and be aware of each person and procedure accordingly.

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Peg (@pegswear) · Oct 10, 2013 · #

This is a tough question and I think it depends highly on the individual and on the type of cancer. My dad had cancer of the esophagus. when he was first diagnosed, they treated it aggressively with radiation and chemo. He went into remission. They told him that if it came back, there would be nothing they could do. He had been in remission for 2 years when it came back. He and his wife kept us posted. I don't remember all the details. But if memory serves (this was 1996), he found out it was back in the spring and he died August 31. They kept us posted throughout the summer (they lived in Georgia, I was in Minnesota, my sister in Phoenix). HIs wife called me in mid August and said if we wanted to see him, we'd better get down there. He'd been in the hospital and did not want to die there, so they sent him home. I was on a plane within 48 hours. My siblings made it a day or two after that. We were there for 2 weeks, and he was still hanging on. He was shutting down, so we knew it was imminent, but I had to leave. I had a toddler at home and I was taking time without pay. I'd been there 2 weeks. He died 2 days after I got home. I was very glad I had time with him. He turned 68 when we were all there and said it was the best birthday he ever had. My sister and his wife were with him when he died. In this case, it was very short term and all his kids and 2 of his siblings were able to get there to visit with him and say goodbye. So, I think it just depends on the situation and on the personality of the patient. Every time a doc has given me time frames for anything, they make it clear they cannot predict it and it is just an estimate. That said: Here's to outliving the timeline!

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mrauthor (@mrauthor) · Oct 10, 2013 · #

Great article - thanks for posting.

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Jerry Roberts (@jerryroberts) · Oct 11, 2013 · #

Good piece, Jamie. I agree that timelines should not be given except for very, very short expectations. When I was diagnosed with my second NHL last year, which affected my central nervous system, one of my docs pointed my wife to a (very small) study that reported average life expectancy after diagnosis was four months and told her there were "no good outcomes" given my circumstances. After several months in hospital for grueling course of chemo, I'm still here...

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Jamie Reno (@jamiereno) · Oct 11, 2013 · #

Thanks Jerry. I am so glad to hear this news. You are a true fighter, a true survivor, my friend.

nicegal (@nicegal) · Oct 13, 2013 · #

Jerry, I am in a similar situation. I relapsed with DLBCL within nine months and was told that the next inevitable relapse would most likely occur in about half the time of the first one. That would have been in June. Then I read medical papers that gave the median survival of a second relapse as only four months. Another paper about a clinical trial said most patients in my situation are dead within two years, another said the prognosis was 'grim'. A transplant consultant told me there was nothing he could offer me, and to go home and enjoy 'the rest of my life'.

My CT scan last month showed no evidence of cancer, but naturally whilst I am thrilled to have beaten the statistics thus far, I am still waiting for the other shoe to drop.

The positive side of having a time limit is that it has made me savour every moment.

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nicegal (@nicegal) · Dec 13, 2013 · #

Update: two months later and I am still cancer free. I was concerned because having night sweats but the oncologist could feel no swollen nodes last week...

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