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Mom Told she has 2 years to live

Cynthia Rose's picture
Cynthia Rose
Posts: 35
Joined: Apr 2011

Moms cancer came back and she is on Abraxane then will start Radiation when the tumors shrink.We asked how long does she have,The Dr. said do you want me to be honest, and Mom said Yes.2 years Is what she said, then said Prove me wrong.We have been sick.I spoke with the oncologists who did the Divinci in Seattle nurse about that, and that Dr agrees,but wants to meet with us because she thought it would help Mom And how She is Feeling about this news.Ive talked with others and they say no one can predict the future and new Treatments are Always coming out.Moms feels Good,Looks great,HAD a real positive attitude,But now that this expiration date set by a idiot has been said to her(as Mary Ann) Daisey says!My Mom Is Scared To Death And I am Heart broken.Thank You Mary Ann For your Continued Support.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Cynthia,

So sorry to read this news!! I love to read about being positive and how the future holds new treatments, so DO NOT EVER GIVE UP. I'm the ultimate optimist and I would throw her good vibes and get her in these treatments. Possibly another NEW oncologist? I've had a few friends start some trials....is this an option as well?

Love MaryAnn's phrase -- "expiration date"...cute~

I'll keep you in my thoughts and prayers.

**** WE'RE A STATISTIC OF ONE ****

Hugs,
Jan

longtermsurvivor's picture
longtermsurvivor
Posts: 1787
Joined: Mar 2010

I think one of your points was that the physician who said this to her was being insensitive. I totally agree with this, and furthermore this physician is just plain wrong. Two years to live? Why not say 5 years, or 10? Geez, no one can predict an event this far in the future. Even if no new treatments come out in the meantime, the human body is not this predictable.

Best to you and your mom.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

My oncologist says no one can tell you how long you have to live. There are many drugs yet, plaltinum with gemzar, topotecan, and I have now heard of VP-16 which is a daily pill. My father was given two years and lived five. It's hard not to dwell on time. I remember how Linda focused on living and not dying. I agree a new oncologist may be the best thing now. Love you, Diane

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Have two girls in my cancer therapy group who are fighting the disease. One diagnosed with bladder cancer 7 years ago and doc gave her one year to live. Well bigolly, she made it thru chemo and never had the original surgery of bladder out (thankfully). After treatments no cancer was found and today she's living a very productive and happy life.

The other gal was diagnosed with breast cancer and given one year to live. Well today it has been 4 months and the tumors in her lungs are gone and now all she's dealing with are broken ribs from her radiation. This gal has hope and sees some beautiful light of life.

Yes I'm a firm believer how do these docs know she has 2 years???? Keep up the fight as she could be another miracle like my friends above.

Hugs,
Jan

evertheoptimist
Posts: 140
Joined: Jan 2011

I completely agree with the replies here: nobody knows how long we have left. There are multiple potential scenarios that will dictate various positive outcomes that will put her life expectancy at several times that of what the doctor said.

That said, let's not pile on the doctor. He was after all ASKED by the patient to provide an HONEST answer. So he gave his best guess based on his experience and knowledge. You can disagree with his assessment, but calling him an idiot for doing what he was AKSED do to by the patient is way out of bound.

You can easily imagine an opposite scenario. The patient was looking for an honest input, and the doctor made up an answer that will make the patient happy (like, 20 years!), and as a result the patient failed to do what's necessary (I will leave it to your imagination - suffice to say, I have a friend who wished the doctor gave his HONEST input regarding her father's condition). In such a case, the doctor did not do any favor for the patient or the family. If you don't want an honest answer, do not ask.

Medical professionals do not get it right all the time, but they work hard to save their patients. They don't deserve to be vilified when they responded to the request of the patient. Of course, when the doctor is cavalierly mouthing off scary numbers based on ill considered data when the patient is not even asking for it, s/he deserves to be criticized, but this case does not fall into this category.

One thing I would like to maintain as my survival tool is a measure of objectivity and rationality throughout all this. My foe is formidable. I need to handle this with all of my intellect intact - as much as possible so that I can make most efficacious decisions based on best odds derived from accurate information.

I am sorry if I sound like such a cold hearted b**ch. I apologize for sounding preachy. However, over the year, I noticed how our desperation sometime make us latch onto irrational beliefs that in the end have a detrimental cumulative effect on the outcome.

We can be hopeful, optimistic, and positive while maintaining our rationality.

I have a stage 4B DX (UPSC - if OVCA, it will be 3C: ambiguous origin), and I am going through a recurrence treatment after a remission that lasted less than four month. I am optimistic and positive, and I would like my optimism based on reasoned objectivity.

longtermsurvivor's picture
longtermsurvivor
Posts: 1787
Joined: Mar 2010

The physician's answer was not based on anything objective or quantifiable. I mean you no disrespect, but I cannot agree that this was a proper way for the physician to handle this question. An honest answer would have been to explain that there was no way to predict this. And that answer would have done far less to set the patient up for false expectations of her future.

Best regards

evertheoptimist
Posts: 140
Joined: Jan 2011

so, if a physician, or for that matter any professionals with years of training in their field, was asked to give an honest input, should s/he ALWAYS say, "no way to tell since there is no such thing as 100% correct answer".

If so, there is no point in asking any question to any professionals regardless of their expertise and experience since NOTHING is 100% certain in this world.

We are asking THEM these questions precisely because of their expertise and experience through years and years of honing their skills and knowledge in a hope to get an answer that has a good validity.

If you are making an investment decision, and asked the financial advisor the odds of success, would you be happier if you got the answer "I can't tell since nothing is 100% certain" Or, would you be better off if he said "95%" success when his "honest" opinion based on his experience and understanding of the market put the odds at 50%?

If I ask my doctor a very pointed question, i expect him to give his best opinion honestly, rather than condescend to me by giving an answer that he thinks will make me happier. I am not a child. I am counting on him to share his expertise and knowledge so that I can make a better decision based on better vetted data.

In the end, it's our intellect that will allow us to chart a better course of action and increase our odds of survival. One thing I learned through this while journey is this: treatment decisions for recurrent advanced UPSC or OVCA are much more of an art than science. Even among the very best practitioners, we are finding a lot of variances. Not all doctors are correct all the time. There is a tremendous room for informed patients advocating themselves with facts, knowledge, objectivity, and reason to affect the outcome in a very meaningful way. I recently proved my doctor wrong - a very very very good doctor at the most renowned cancer treatment facility. No he was not negligent or incompetent. This happened because my case was very different from the majority of other women in a similar situation. I have paid close attention to all the details, all the data, every single piece of test results, and I made a connection that the doctor missed, because he was not looking for it, and probably he hardly has ever seen something like it, and had no reason to look for it.

The moral of the story: data, research, and facts are our survival tools. Ignore them at your own peril.

Again, I apologize if I come across condescending and unsupportive. However, in web sites like this, we spend sometimes too much time responding emotionally to each other's journey while some hard nosed and objective discussion might give us better insight into what needs to be done.

PS: it's not true that there is no quantifiable data. On the contrary, there is plenty. Just google the survival odds. The life expectancy can be obtained by multiplying the time period mentioned (e.g., 5 years) by the odds of survival (%). sO, if the odds are given at 20%, the life expectancy is 1 year (5 year x 20%). However, this is a blunt instrument at the time of DX. Once you are way past the time of initial DX, the conditional probability of survival is calculated based on how far you are out from DX and what your past medical history has been. data regarding this is far less conclusive. This is where the doctors' own personal experience, insight, and knowledge comes to the foreground as a basis for the estimate. Even so, there are still pretty good data: every time I read clinical trial study results,I look for the survival data of women in the control group. This gives a pretty good approximation of the actual data on a larger scale - probably a bit better than the general population since most trial participants tend to be a bit healthier than the average patients.

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

One other thing to consider is that some physicians don't want to be sued. If they say 2 years and the person lives beyond that, I don't think I ever recall any physician being sued because the patient lived longer than told. However, if someone is told 10 years and dies within a year or two, there is the possibility of medical malpractice.

maybe physicians should say "statistically survival rates are......" but then again once a patient hears the number, they usually don't hear the rest.

By the way, Ever, can't you sleep? I see you are up late.

longtermsurvivor's picture
longtermsurvivor
Posts: 1787
Joined: Mar 2010

To me, being honest with a patient is the important part of this. Anything else creates distorted expectations on the part of patient and family. To reiterate, the two year survival expectation was dishonest on the part of the physician. There are ways to talk to patients about this without blowing up the situation. These "estimates," btw are statistical and predicated on firm literature, not mere guesswork. At least, in my practice of gyn oncology they have been.

Best to you.

evertheoptimist
Posts: 140
Joined: Jan 2011

well, we will have to agree to disagree on this.

I think there is NOTHING dishonest about the physician's answer. Dishonestly implies ill intention to deceive. The doctor did no such thing. He did not give a depressing, and dishonest answer to harm the patient. He was asked about his opinion as a doctor, and he complied.

I believe we diminish ourselves and worsens our odds when we can't maintain some measure of reason and rationality in dealing with all this by turning everything into an emotional exercise. Not to dismiss emotional aspects. I am only talking about the situation when our emotions get the better of our reason.

Anyway, we are beating this horse to death, and I will stop here.

Peace, and good luck with everything!

longtermsurvivor's picture
longtermsurvivor
Posts: 1787
Joined: Mar 2010

You have no idea of what you are talking about. Your blind assumption about the physician's honesty, or lack thereof was completely wrong, and your efforts to advance your cause have done nothing but invalidate the original poster's point of view. This is a board for those of us with cancer, and the caregivers for those with cancer to mutually support each other. Shame on you.

To the original poster: the physician was wrong to do this. Your chagrin over the interaction is totally justified.

nancygt
Posts: 86
Joined: Jan 2010

Good input but thought I would weigh in too. UPSC diagnosed 12-08, multiple treatments and now have third reccurrence in lungs. I sort of forced (like pulling teeth, actually) a prognosis out of my onc as we are doing oral tamoxifen for 90 days with hope to slow or stall tumor growth but may have to go back on chemo April.
I asked him for optimistic, likely and pessimistic and here is what he told me. Optimistically he still hopes for the 8 years my MD Anderson doc told me she had with a stage 3/4 patient that recuured in less than 2 years from original diagnosis. I asked him if that represented a miracle and he said maybe at least a minor medical miracle (which he never completely rules out). Then I asked him about pessimistic and he told me a year or two-but I still have drugs to use and have responded to earlier chemos, although it typically recurs in 6 months. I treasure that time off and this time it looks like I may get 9 months off so I have 3 trips planned - trying to live my life, however long it is and still fight.
When it came to likely scenario, he finally said 3 years, maybe a bit more, assuming I respond to chemo for a while longer and it shrinks tumors or slows growth. I know that is not a totally positive picture but it helped me cope and I appreciate his honesty and still pray for miracles- from minor medical miracles all the way up to the big kahuna. But I intend to live large when off treatment and find as much joy in day to day life when I am back on treatment as I know I will be.

evertheoptimist
Posts: 140
Joined: Jan 2011

Nancy,

if your DX was stage 3+, then you already beat the odds by being still around after 3 years since the DX.

Here is something that will make you smile. Once you pass the expected life expectancy based on your survival odds, the longer you hang around, the better your PERSONAL odds become. That's just the nature of statistical compilation. (trust me on this: statistics was my Ph.D. minor).

For instance, I read that OVCA stage 4 odds for 5 year survival at the time of DX was something like 16%. If you survive a year, among your group of survivors (those who survived a year), the odds are close to 30% that you will have lived 5 years from DX.

So, congrats. Each breath betters your odds.

As a UPSC 4B, my life expectancy at the time of DX was less than 6 months. After close to 14 months, I am still here, and DOING VERY WELL in spite of the recurrence. I like the idea that with every step I take, every breath of fresh air I inhale, every argument I have with my husband :-), every aggravating phone call with my mother (long story ---), every annoying thing my kids do, and every stupid marketing call exactly timed for the dinner time, my odds of survival is getting better.

This is an uplifting thought.... It does put things in perspective, does it not?

Kaleena's picture
Kaleena
Posts: 1067
Joined: Nov 2009

Cynthia Rose:

Just want to say I am sending thoughtful wishes your way to you and your mom and that your Mom proves the physicians wrong. I hope she is feeling better.

My best to you and your mom.

Kathy

I Will Survive
Posts: 27
Joined: Aug 2011

DITTO to everything you wrote!

Hannah

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