Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

New Doc says 3 years to live

Shanti
  • By Shanti
  • Posted August 1, 2009 at 11:48 pm · 25 replies
  • In Recurrence
  • Shared with the public
0 Recommendations

Hi everyone,

I love this site for the upbeat humor and yet heartfelt sisterhood. I don't want to be a downer but I just wanted to hear what you thought about something that happened at my last meeting with my new oncologist. At one point during the discussion we were talking about postponing chemo because of my daughter's visit and I said something like, 'It's not like I have another thirty years to spend time with her." and he agreed.

Twenty minutes later after covering many other topics he turned his back to me and faced his desk and said, "so how many years do you think you have? 3?" and when I said yes, he agreed that it would be at least 3. I was really very shocked by his statement. Everything I know about the statistics regarding being metastatic I have garnered through my own research. I have never asked any professional how long they thought I would live. I work hard to try to stay focused and upbeat and up to date on treatments available. I just switched to this new doctor and now I feel confused about why he would say that to me. I don't want someone working on my case that thinks I am already a statistic and therefore might not give me the most aggressive treatment that I can tolerate well.

What do you think of what he said? Should I bring it up next time I see him and ask him why he said it? I see myself as a nuisance patient to my local oncologists because I continue to go to a major cancer center (MD Anderson in Houston). No one there has ever talked to me about how long I have, they are focused on the most effective treatment. I feel like they are trying to give me the best they have to offer. Now I feel like this local oncologist is saying in a backhanded way, "why continue going to MD Anderson? You are going to die in 3 years either way.

I would appreciate any opinions/input.

Terry

Explore topics in this discussion:

Cancer Confusion Meditation Breast cancer Chemotherapy Pain Liver cancer Palliative care Depression Astrocytoma

25 replies

faithmena

How in God's name could this doctor possible know how long you have to live? No one on this planet has that ability. There are women that I know personally who have attained NED and have remained NED for many years....there is a member on this board who has stopped all treatment after 8 years because she is doing so well. My own doctor when I posed that question, responded by saying depends on how you react to treatment. That makes perfect sense to me. If my doctor said you will be dead in three years I would fire his ass.

chainsawz

I agree with faithmena - if my doctor dared to give me an expiration date I would fire his ass. No one can predict how long any of us will be here. In fact, the statistics available today are from years ago when many of today's treatments were not available. We are making the statistics now! Never give up hope and never stop trying no matter what anyone says.

I was just dx with a brain mets (already have lung mets), and found a woman online who has dealt with the same thing for almost 7 years! You don't see her in statistics. And doctors don't know about these people and their lives because they read the statistics....not their personal stories. We do - and we know they are real. I really wish doctors were required to read the same posts we do.....boy, would they learn so much more!!!

gasketman

Shanti,
I am sure by now everyone knows how much I think of Doctors (and their practice). So far I have not found one that gets it right all of the time, but yours I would fire in a heart beat. He has already given up on you.

I am sure that if you search any where and every where on your own body. You and this Doctor will not find an expiration date printed, marked, or tattooed on your body.

I do not know when any of us will die. But I do know that Doctors do not know more than we do when it comes to this subject either.

I would like to share one of my favorite poems with you

THINKING

If you think you are beaten, you are
If you think you dare not, you don't.
If you'd like to win but you think you can't,
It's amost a cinch you won't.

If you think you'll lose, you're lost,
For out of the world we find
Success begins with a fellow's will--
It's all in the state of mind.

If you think you're outclassed, you are;
You've got to think high to rise;
You've got to be sure of yourself before
You can ever win a prize.

Life's battle don't always go
To the stronger or faster man:
But soon or late the man who wins,
Is the one who thinks he can.

Walter D Wintle

I believe with all of my heart and soul that there is a cure for this Alligator Match and that together we will find it!!

God Bless

Scott

StickiVicki

It depends on how you view this "target" - as something to be met, or something to be surpassed -now that it has been said.

Maybe you should write a letter to this new oncologist and explain the reasons why you go to MD Anderson (which from what I have read is EXCELLENT and treats cancer patients in the way that all hospitals should aspire to) and make it clear that you are only interested in moving forward with your life and treatment. When you want to "give up" you will tell him, and not the other way round. A letter gives you the time to say everything you want to say in an orderly manner, which is not always possible in a conversation where the subject can be altered too easily away from what you want to be said.

We all have the right to allow nature to take its course with this disease, but no one else should be dictating when that should be. We all have moments when we wonder if it is worth going on, but in the end living is your choice. Doctors are dominated by statistics, for life expectancy, the effectiveness of medication and so on, which is so discouraging as they are forgetting you are an individual. I AM NOT A STATISTIC and I have never been ever vaguely average, and I'm not going to start now!

The letter could be wording to say that you would like to discuss this matter with him, and if he cannot support you with the path you want to take then maybe you would have to consider finding an oncologist who will! This is probably why you still go to MD Anderson after all.

I'm on my way down on the bungie cord and am now ready to give the alligator a really good punch as I am annoyed now, and if I should pass your oncologist on the way up I will poke out my tongue and resist giving him a slap. Vicki xx

Groovygirlcool

Hey Shanti

This is such a difficult area (prognosis) for all involved. I wholeheartedly agree with Mena, LIsa and Scott (love the poem!) and Vicki.

I remember sitting in the oncologists office, two weeks after two surgeries (in the previous two weeks, for the initial dx). It was the first time we had met, and he perused my scans head down, and casually mentioned "Well it's palliative treatment for you..."

Right about that moment my heart stopped (I'm sure) and I had to tell my lungs to start breathing again. The word 'palliative' to me equalled imminent slow painful death.

"There's nothing we can do to cure you, this disease will probably progress giving you 2 to 3 years at best".

He then went on to explain bone mets and to my desparate questions about chemotherapy -" I'm willing to do ANYTHING it takes - I've got 3 & 5 year old daughters to raise, and my parents have died in recent years - I have to survive..." He just replied "No chemo for you, radiation if you have pain..."

This was January 2006. Ever since, I have read and researched to devise my own protocol to compliment hormonal/ Zometa tx. My Onco (John) has just retired from the public system, so I'm alloted a new Onco, who I'll see on the 20th August.

I got to know John very well, and really liked him. I gave him a run for his money - challenging his opinions; his knowledge of CAM therapies-(none!); and his 'bedside manner'. On my last visit I got a hug and a kiss - he told me I'd been a 'refreshing' patient, I took that as a compliment!

The 2 to 3 year prognosis was akin to laying down the gauntlet - a challenge - "I'll prove you wrong Sunshine - I'm not average!"

As for whether your new Onco seems to be assessing how much time, energy and effort is worth 'investing' in you - hey, you might just go and die any ol' time- he might not view you as a long term prospect!!

Time for you to think with your gut, your intuition, your heart - leaving your rational mind out of this one. If something tells you this person is not 110% on your side and sees you as a something of a forgone conclusion-DITCH HIM NOW!!

I believe it was Norman Cousins who said "Accept the diagnosis, but reject the prognosis" - good advice indeed.

I intend to "interview" my new Onco, and frankly if she's not willing to be on my cheer squad - I'll jump and down til they give me someone else!

It's their 'job' - but it's our LIFE.

xxxGGC

Gentlenatured1

Hi, Terry---

In my first meeting with my oncologist, I asked him how long he felt I have.

He said he could not answer my question because it was unfair.

He said he had no idea, and that I should pay no attention to statistics.

Concentrate on living the best and happiest life you can.

If I were in your situation, I would get a new doctor.

PAMELA

linskate

Shanti..I agree with all the replies...my docs told me it is a disease that can be managed and no expiration dates were given. Of course, I asked the question of how long do I have when I was first dx and they just refused to address this question. They indicated I may have years as long as the treatments are working. With liver and lung mets, I thought for sure I was a goner but felt so much better because of the optimistic attitude of my doctors.

Before you fire his ass, ask him again why he said three years and I bet he weasels out of ever saying that. I would be very curious to hear his response.

GGC...I can't believe your doc said pallative care??? So glad you fought for your right to treat this disease.

mlm

I agree no one can give you an expiration date. Have you considered discussing this frankly with the onc? Sometimes, saying what is on your mind in a straightforward manner is best-lets everyone know where they stand. Maybe he thought you were looking for an answer/maybe he just should never have said that to you. Asking him why he would give you X number of years to live when you both know most onc would not give that kind of answer/response to a patient. If you think going to MD Anderson may affect your treatment-tell him so and see what he says. I don't believe beating around the bush at this stage of the game is a good idea. Your onc has to accept you as a patient "warts and all" and you must choose to accept the onc "warts and all" or decide to seek another onc for treatment. This is a most important relationship for you/us and you must be able to speak frankly and have trust in your care.

LaurieW

Just being diagnosed myself I too have heard the 2-3 years statistic. When I went to Dana Farber last weekend, they did mention this statistic to me (I think I brought it up though) but said that that statistic doesn't take in to account many factors including new treatments and studies. I'm thinking an average also inclues those who were very infirm at diagnosis which makes the "average" lower. I did get the impression that an aggressive optimistic treatment plan helps us survive for years with the hope and knowledge that new treatments are being developed. I am encouraged by the answers here that some patients do respond for many years to the current treatments. I plan to see another oncologist this week at the OSU Cancer Center that was recommended to me at DF and will see what she says to me.

Laurie

Groovygirlcool

Hey linskate

He said palliative "treatment" - (not palliative care) but the only thing my shell-shocked brain registered was that loaded 'p' word!!

When I questioned this further, gaining the understanding that this meant " treatment to alleviate symptoms when cure is considered impossible" - I promptly informed him, that for the newly diagnosed - give THAT word a miss!!

Cheers, xxxGGC

margaret27217

Okay, before you guys throw dermaters (that's tomatoes in Southern) at me, wasn't Shanti the one who said 3 years? That's what I read. I also read that the doc answered that she had at LEAST 3 years. I just think he's a dude with poor communication skills. Yes, he should have said, 'Shanti sweetheart, I hope you live forever", but like Linskate said "Before you fire his ass, ask him again why he said three years and I bet he weasels out of ever saying that. I would be very curious to hear his response." He may say that he was wrong to give you such a definitive response. However, if he weasels, kick him to the curb.

momx4TNBC

Just wanted to share another encouraging story. I went to the Metastatic Breast Cancer Networks Hope for a Future Conference at Dana Farber. I met a lady there who is now 74 years old and has been living with mets for 30 years. Her video is inspiring. She shares how she was able to remain optimistic because her Doctor was optimistic. Will add to video section if I can, but here is the link...Oh and there were many stage 4 survivors there in the 10-20 year range...alive and well and living with this beast! My oncologist also has a lady who has been living with bone mets for 30 years....on and off treatment during those years. she was diagnosed in her 40s and is now 70 +....I for one am hoping to be like one of these 2 ladies and nobody can prove me wrong at this point! I would ask him to clarify....He may just be an extremely poor communicator....If he really believes those old statistics, I would find a new oncologist... Enjoy the video... http://www.mbcnetwork.org/video/RitaArdittiChapter10MPEG4LAN.html

LaGata

When I went into my surgeon for my post op checkup after my first diagosis, the surgeon told me I'd probably be cancer free (?) for at least a year. A YEAR!!! That was in 2006. I haven't been back to him since.

Shanti

Thank you for all your replies. I needed to hear if this was a 'normal' thing to say outside of my own personal experience. No one else has ever talked to me about survival statistics but I never asked as I did my own research online. And of course I always hoped that I would be at the tail end of the curve and that is how I have been approaching my treatment.

Scott, I love the poem. That is exactly how I feel in my heart and that is why his remark was disturbing. I also feel that we need to accept our doctors with their warts as we want them to take us that way too. I will probably have to talk with him about it to see if we can work together or not.

Groovy Girl, I know how that word palliative can pack a wallop. When I first got my stage IV dx at MD Anderson I went to their computer library and found a flow chart that for me ended with "palliative care". Quite a shock at the time, but I have since learned more and now see it as more of a chronic condition that needs to be extremely well managed. I also don't see myself as an 'average' person, but I don't think I want to have to fight against this guys opinions and prove him wrong. I want someone who also thinks the best is possible as many of you pointed out there are many who are not included in their charts and there are even some who are included who live on and on.

Margaret 27217, I said to him that I knew I didn't have 30 years to spend time with my daughter, not 3. He volunteered the 3 years out of the blue with no reference to anything else in the conversation.

MLM, My inclination is to ask him why he said what he did and just wait to see what he says. It could open up a conversation about how I want to be thought of and treated. I am a big believer in honesty and openness. My fear is though, that there are only so many local oncologists where I live on the central coast of california.

The funny part of this situation is that this doctor was the first oncologist I saw when I was first being dxd. I had a very large lobular tumor that I was worried was inflammatory breast cancer and wanted to be sure I was dxd correctly. One of the last things I asked this doc on our first meeting was would he run any other tests as at this point we only had biopsy results which showed a large triple neg tumor that was already invasive. He said he wouldn't run any more tests and that we would just "go for a cure". I subsequently went to MD Anderson where they ran tests which identified several bone mets for which I have been receiving Zometa for the last 2.5 years. And which I think may have been helpful in containing my mets to the bones so far. That is why I didn't go back to him in the first place.

I feel like printing out all of your responses and bringing them in for him to read.

Thanks again for responding to me. This site is so wonderful and gives me a place to ask the difficult questions that sometimes arise.

Deanie

Shanti, I am struggling with your posting. My initial thought was, WTF? Your Onc was ill-spoken at best. Then I remembered a conversation with my own doctor. My husband goes to every visit with me as my advocate...since I have been shell-shocked during this first year of dx. He asked the "how long" question. My Onc looked at me and asked if I wanted to hear the stats. I didn't want to but felt since my husband asked, he deserved to hear an answer. The wording of the answer was that there is a 10% survival rate after 5 years. His inverted answer immediately made me think I would be in that 10%. Also, I appreciated his requesting my permission before blurting out an answer. He went on to say my life would never be the same but would now be before cancer and after cancer. He said my life would now include "managing" cancer but that there were many tools that we could/would use to address not only quantity but quality.

I was/am offended by your Onc's volunteering his prognosis AND his seeming belief that we all represent some statistical average. My first reaction like many others was fire his ass but there is no guarantee that the next one won't be as inartful or worse, less competent. Let him know what your concerns and expectations are, then give him a chance to respond. If his response is unacceptable THEN say, "Next."

nancyc

I, too, am not in the "off with his head" corner. From the way that you described the conversation, it seemed that he was agreeing with your assessment of your prognosis, and added "at least"...leaving open the belief that that could be an understatement of your prognosis.
Having said that, and having been a nurse for 30 years, there have been many times when I have railed about some brainless doctor who thoughtlessly "condemned" a patient to a death within a certain time frame. I think that more doctors these days are reluctant to be pinned down to any specific time frame, because they know that they DON'T know how long any patient will live.
Prognosis is a difficult conversation to have, and probably one of the more difficult things that a doctor has to deal with, but there is an argument for not sweeping it under the rug. Some people need to be given some idea of what is anticipated in order to make plans for the time that they have left, and to make necessary legal arrangements. Our culture as a whole doesn't do a very good job with this, but at some point, a compassionate doctor will have "the talk" with a patient for whom more treatment will do nothing but prolong the dying process, cause more pain, and cost a good deal more money. It's a delicate balance.
I've personally seen the extreme opposite of that path. Years ago, I was asked to drive with an ambulance to New York to pick up a patient from the rehabilitation facility where he'd spent months. He had an astrocytoma of his spine...a spider-like tumor that was impossible to remove, as it had grown tendrils into and among the tissues of his spinal cord. He was deeply depressed...so depressed that he'd been non-verbal for months.
I brought him home, got him settled in a hospital bed on the ground floor of the house, and made sure that he was comfortable. He smiled at his family, and started speaking again. He was so relieved to finally be home. I can't recall if he became comatose the next day, or the day after, but he died very quickly after he got home.
I was always disturbed by that poor man being "rehabbed" practically into the grave. If his oncologist had been able to have been honest with this man and his family, and told them that his time was limited, and that it would be best spent with his family, at home where he'd be surrounded with love, he wouldn't have spent all of those months alone, far away from his family, and so depressed that he couldn't talk.
It is disturbing to think that the day will come when we die, but obviously, everyone does...cancer or no cancer. Having an incurable disease brings it rather to the forefront for us more than for most. I think that it helps to have as honest a relationship as possible with our doctors, and let them know if something that they say is disturbing to us, seems defeatist, doesn't allow for unanticipated progress, or if we're not ready to discuss it.

Shes-So-Weird

After I was told I had cancer, I asked doctors for a prognosis. I think that I, like all of us, wanted to hear that there was no reason I couldn't live a long and healthy life. I couldn't get that answer, it would have been irresponsible of the doctors to make false promises; they could only give me statistics. But after 6 months I see the amazement in their faces at the progress I've made, so I do believe I will live a long time. This chemo that is working so well will give me time before I jump to the next stepping stone of better treatments that are cropping up every year. Don't give up, Shanti. A miracle treatment for all of us could be one more stepping stone away.

Dreamy

I agree that he was looking for your response. He turned his back so you could not read his expression. If you had said no to 3, and said 10 he may have said the same thing with 10 in it, "at least 10 years". And he did say at least 3 years.

Mine said 9 to 12 months..... that was 3 and a half years ago. Enough said, lol.

faithmena

Not to beat a dead horse but I just want to say that for me the issue is the psychological impact on a patient when a set time is given. I know that if my doctor told me 3 years it would be a huge blow and I would have that number in my head. Now I know it's based on treatment and my responding to it. Simply being stage 4 is enough in my opinion to know that we should have our affairs in order. Having said all that I choose to have lots of hope, hope that I will respond well and hope that I will attain remission. Remission is my goal, and hopefully for a nice long while.

Nursemets

Dear Terri, I am a fellow Houstonian and feel compelled to tell you that you must remember it is you who is in the driver seat of your own care. I fired my previous oncologist when she told me (after my lovely stage iv diagnosis) that she had "a patient with a similar scenario to mine who she encouraged to get that motorcycle she always wanted and take a long ride." Well, I took a quick ride out of her office with a complete copy of my chart and began to look for a new doc. May I suggest you may want to give Dr. Khaled Jabboury a call. I believe the man has saved my life and he and I are total collaborators in my plan of care. He's as West Houston Medical Center, 12121 Richmond Avenue suite 100, phone # 281 558-5385. If nothing else, you could just schedule an appt for a consult. I've realized the more smart people you talk to the better. Dr. J. has repeatedly told me that his "goal will always be complete and full remission...and I will never settle for less." He told me recently that he could not come to work each day if he did not believe this. He spent many many years at MD Andersen and I'm sure he knows your doc. Dr. J. thinks outside the box and as an RN I respect him in many many ways (and believe me, I don't say that about a lot of docs!). Good lucky friend. Let me know if I can help in any other way. ps, I'm 22 months out on my liver mets dx and work full time, have a ton of energy and just got back from a kayak trip on lake tahoe...and I never plan on getting a motorcycle....way to dangerous!!

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You