One of the most heart wrenching days of my life came after my first surgery when I learned I had a rare disease variant of my cancer. It tanked my survival rate an extra 20%. I felt like someone was yanking my heart through my nostrils. Years later, a subsequent pathology report showed no evidence of the rare disease variant. Poof, I was jacked back up to the normal papillary thyroid cancer statistics – which are damn high. I don’t know what made the variant disappear but I’m extremely grateful.
I love this quote from Rick Gribenas in my book Everything Changes: “Ambiguity is more real than a prescribed prognosis, which is complete crap. If there’s an 80% chance of this, or a 20% chance of that, it’s still a chance. Who knows which percentage I’ll fall into?”
I agree that you have no way of knowing which percentage you’ll fall into, but I still want to know my prognosis. In my mind, not knowing my odds harkens back to the days when doctors refused to tell patients of their prognosis because they didn’t think we could handle the truth. (I’m sure there are still a few docs who think this way.)
I want to prepare myself for the odds, even though I don’t know which side of them I will be on. The danger in this for me is that I’m a hypochondriac freak and if my odds were crummy, it would be hard for those numbers to not rule my life. On the other hand, when I recently learned that my odds of my cancer metastasizing to my lungs, brain, and bones were lower than I expected, it brought me great peace of mind and I was glad to know the numbers.
It irks me when people say “a number is a number” or “I’m not a statistic.” I feel like those phrases trash science and I’m a big fan of science. Statistics represent a lot of information that can help navigate our choices in how we treat our diseases. I think it’s possible to simultaneously look at our health in terms of statistics and live as fully emotional beings.
My prognosis is good so I’m sitting in a pretty cozy space to make these judgment calls about wanting to know my stats. Maybe this whole post would read a lot differently if my numbers sucked.
Do you want to know your survival rates? How do you mentally contain that information?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
December 15th, 2009 at 2:02 AM
I remember during treatment the doctor and nurses would run down the list of side-effects. They would also reassure me saying that 99% of the patients did NOT experience those side-effects. Knowing that before doing the treatment or surgery gave me much comfort.
Surprise surprise! I am the 1%. I experienced every single side-effect!! It was horrible.
On a much grander scale where survival is at stake, I would imagine getting the statistics would give me peace of mind. Even if I end up in the unfavorable subset, knowing where you stand is better than being in limbo. I deserve to know and to prepare for what’s to come.
Kairol, I love your blog. Just ordered your book on Amazon. Keep writing! :)
December 15th, 2009 at 3:06 AM
If my chances of survival were better according to the stats, I’m sure I would take some comfort from that. Unfortunately, there is only about a 20-40% chance of someone at my stage with this cancer being ‘cured’, which isn’t great in my book. Given I also have a number of negative prognostic factors, it’s likely to be closer to 20% in my particular case. It’s not just the stats - I know it’s not going to work out for me. I am absolutely certain that I will not survive.
December 15th, 2009 at 3:51 AM
Interesting topic…Statistically, the third time I was sick, I had a 0% chance of living past a few weeks…no one ever had with my type of cancer following a stem cell transplant. Well, it’s now 7 years later and I made a new statistic :). You just never know…
Rachel
December 15th, 2009 at 11:04 AM
I think my attitude is similar to yours, Kairol. I have been at both sides of the stats game this year, good and crappy. I have mentioned that I was diagnosed while my premature daughter was in the NICU. She was premature because her identical twin sister died in utero at 28 weeks. They were rare twins with about a 50/50 chance of survival without inpatient monitoring. With good monitoring, the odds of survival went up to 90%. We still lost a baby. During the first weeks, my daughter’s chances at survival were quoted at “minimal.” She is at home, sitting up almost unassisted, a happy and healthier every day child. When I was diagnosed, my dr. told me I would be “just fine,” then with the tall-cell diagnosis my odds also dropped. It was at that point that I sort of shut down to the stats chatter, at the good advice of my doctor. He told me I had bigger fish to fry than look up scary things on Google. He said at a young age, with a small tumor, my odds were still pretty good. I chose to embrace that thought, and just go on with treatment and life. I won’t be shocked if I have a recurrence, but I can’t take the time to let the odds consume me at the moment. Thanks so much for your perspective!
December 15th, 2009 at 11:04 AM
Anonymous - Given your circumstances, are you glad that you know your stats or would you rather be in the dark about them? I’m curious to know if even when someones stats are really grim, is it useful information to have? Sorry to read about what your future holds in store. Kairol
December 15th, 2009 at 11:24 AM
Anonymous- I’m sorry to hear about your struggles but I have to say that I truly believe in the power of mind over matter. The doctors gave me only a 10% chance of living for 1 year without a bone marrow transplant and to get that transplant I needed to achieve remission- they only gave me a 30% chance of achieve remission AT ALL. That was in 1995. I achieved remission in 30 days, had an allogenaic bone marrow transplant in Jan or 96 and have been cancer free for 14+ years. I’m not saying that these numbers aren’t scary or that they don’t represent facts but each case is different and I truly believe that we all have the power to affect our own situation. Cliches are such for a reason and I think that “self fulfilling prophecy” is one of the most powerful. I sincerely wish you the best.
December 15th, 2009 at 11:43 AM
Tempting as they are, stats are not at all useful for individuals! An important thing to keep in mind is that survival rates also reflect the deaths of folks that got into motorcycle accidents, OD’d, had strokes or died from any cause. If your cancer is one that usually strikes an older population in higher numbers, i.e., non-Hodgkin’s lymphoma, breast cancer,etc., then you are looking at stats that include a great deal of age-related mortality having nothing to do with cancer.
So stay focused on being healthy (exercise, good diet, rest, good stress management, good support) & keeping informed on the best possible treatment options for you, which may include phase II or III clinical trials. Many phase III trials are actually the emerging standard of care and you will be getting it first.
December 15th, 2009 at 9:04 PM
Kairol - I think I’d rather not know and not have such a short time limit on my life as I feel like it has paralysed me. In saying that, I’d never be able to contain my natural curiousity enough to avoid looking up the stats.
I do get the ‘mind over matter’ argument and I wonder whether it’s going to end up being a self fulfilling prophecy in my case as I opted out of some treatment that I technically should have had. Bad choice I know but I just couldn’t make myself care enough to go through with it at the time and now it’s too late. I did at one stage allow myself to feel hopeful that it would all work out - but what I was most hoping for didn’t end up happening and it was such a huge blow that I just can’t allow myself to go through that again. I’d rather be realistic and expect to end up like the majority than kid myself that it could turn out differently for me.
It still sometimes feels so surreal how completely different my life is now from what it otherwise would have been if I hadn’t ended up with cancer! It’s like being stuck in a never-ending nightmare!
December 15th, 2009 at 11:12 PM
I was never told my prognosis exactly, so I looked it up myself. My disease is pretty rare and there isn’t much information out there on it - something like 100ish cases. I’ve read studies, and for example one included 11 people and 4 of them are alive now. According to my calculator, that’s about a 36% chance. Pretty crappy.
After my stem cell transplant I was told I would have a 50% chance of remaining cancer free which I firmly believe was made up to cover the doctors ass, that way he can’t get blamed if it goes either way. However, if you ask my dad, 50% is an “excellent prognosis.” Yeah, when you think about having half a chance of being here in two years it somehow doesn’t sound as sweet.
I’d love to “beat the statistics” but I don’t know if I will overcome them. I think I’d like them much more if they were in my favor.
December 15th, 2009 at 11:17 PM
Well first of all, thanks for letting me be a part of your conversations on this issue considering that I am not someone who is facing grim statistics. I have no cure for my cancer, I’m biting my nails off over it at the moment, but that is a hell of a lot different from having a poor prognosis.
After reading all of your comments - I am reminded of some practical conversations I’ve had with young patients whose odds were pretty crappy. A lot of people who had crappy survival rates and were parents really viewed their numbers from a very practical perspective. Whether or not they were going to live or die, knowing that they had those odds motivated them to make arrangements for their children, write letters to them to read when they got older in case they died, make wills and living wills. Of course we should all be taking care of business in this way, but nothing motivates you like having a child and knowing you are currently living with a cancer that has not a great survival rate (even if those rates are based on other age groups - smart comment Dearlizzie).
Anonymous - thanks for your comments. It’s rare that we get to see inside each others heads around these issues and I’m learning a lot from your comments.
I personally think that our will, desire to live, and wanting to beat the odds has nothing to do with whether someone does or does not actually live. Numerous studies have shown that there is no correlation between positive thinking and beating cancer. I think that there are scientific reasons that we don’t yet understand that explain why people beat unexpected odds. Maybe the 1 person in 1,000 who actually makes it has a protein in them that we have yet to discover. It probably also happens that they really, really wanted to live, because most people who are dying of cancer do want to keep on living and be cancer-free. So it is easy to say that the survivor’s spirit is what kept them alive.
As for the other 999 who don’t make it - I think it may be very meaningful for them to look at and think about their survival rates so they can prepare for death. I don’t believe in the magical thinking that if you accept death it means it is going to happen to you.
I have not heard many other people take this stance and I continue to respect people who believe that mind over matter is what got them through… that is just so long as we don’t think that others died because they didn’t try hard enough to have a positive attitude.
Great conversation guys!
xo
Kairol
P.S. - I agree with you that 50% chance of living does not sound so sweet to me either. Hang in there!
December 16th, 2009 at 12:38 AM
“I don’t believe in the magical thinking that if you accept death it means it is going to happen to you. I have not heard many other people take this stance … ”
It’s not an easy or popular stance to take. On survivor support forums, it can be death or at least unrelenting flames to admit that accepting death isn’t the thing that ends your life. But if you’ll share the seat, I’ll happily admit that I sit there most of the time, too. ;)
I knew the survival outcomes the day I was diagnosed. Stage IV, extensive mets to the liver - no matter the cancer, that scenario ain’t pretty. I used to tell people who got all evangelical about having a ‘positive attitude’ that I was pretty positive I had cancer and it would likely be fatal. At least that response shut up the cheerleader-style positivity for a few minutes!
The thing about stats and survival outcomes is that they do not all include people who die from other causes, older patients (or younger patients) with different health and lifestyle complications, or any of the other I’m-gonna-ignore-the-numbers disclaimers people are fond of repeating. The NIH does *targeted* stats and survival rates, every year, and they’re only 12-18 months behind the current date (depending on when in the current year you search for them.) Those targeted stats are what fund-raisers and grant writers use to get more money funneled into their research - so I’m proud to count myself in the stats for the treatments I’ve had which have, against all odds, worked to keep me alive. Without numbers making up success rates, there would be no funding. Living is the best thing I can do to advance research at this point. ;)
December 16th, 2009 at 10:47 AM
This reminds me of a remark overheard in a waiting room. Someone said that 50% of cigarette smokers will die. I wanted to say “Let’s all light up!” because for the rest of us, it’s 100%. Statistics are often misleading, and we need to know the size and makeup of the population studied, the expertise of the staticians,and the source of funding for the study.
December 16th, 2009 at 3:49 PM
Like so many of us, I was obsessed with the stats when I was first diagnosed. But then I began to talk myself out of giving the numbers any more power: the stats were outdated and my treatment protocol was less than 5 years old, they didn’t apply to me because I was so young, etc.
But I looked at the 5-year survival rates for my diagnosis again recently. 60%-while better than 50%, or 20%-still leaves a lot of room for error and I’m aiming a lot higher than 5 years. Fifty more sounds about right. I’ve got places to go and grandkids to meet, after all.
December 16th, 2009 at 5:13 PM
Carolbe - You have motivated me to write about reliable statistics and how patients can find and use statistics that matter. Thanks for motivating me for a future post.
December 16th, 2009 at 8:09 PM
Hmm, not sure anyone would really want to see inside my head! I feel like I’ve been possessed by the cancer demon! :-/
I have had the old ‘you have to stay positive’ line spun on me a few times and it doesn’t impress me much either. I was doing just fine before cancer, I was happy and no more stressed than anyone else I knew. That didn’t stop me getting cancer, did it?
On the other hand, I did read an article about a study done (reported in the 15 November 09 Cancer journal) that showed that death rates are significantly higher for depressed cancer patients. Pretty hard to stay Little Miss Sunshine all the time when you have a potentially fatal disease though isn’t it!
December 16th, 2009 at 9:25 PM
It’s terrible to have a disease. It’s hard when stats based on populations applied to individuals. I am considered “cured”- Will the thyca kill me? Probably not. Will somethign else kill me? Yes. definitely. But it’s a back burner worry. One big maybe.
All I know for sure is that one day we all die. The when is what we don’t know….. The unknown is really hard to deal with. Not knowing why you have what you have. not knowingn if it will come back. But ultimately I know I cannot live that way day to day. It eats me… so I try to let the worry go into remission but then sometimes it comes back, and I can’t control it, like a slow smolder taking over everything. That’s when I fall off the wagon.
These are the times where it’s like a full time job to keep myself sane.
(K-I am down to just biting my first finger nail — if I could just grow it out long enough I could get a mani and then would be less likely to bite, but at the moment, it’s bit below the quick. Also, when I am stressed about my health, I turn into a short term hypochondriac….Wed I woke up w/ a sore neck and a headache I was SURE for about 15 minutes I had meningitus and figured I better get to the DR right away. Then I decided no, I didnt. I was just crazy for a minute. It’s nerve racking! I told my internist who is also jewish like me and you and we had a chuckle. Oy.)
December 17th, 2009 at 9:22 AM
it’s very interesting to read everyone’s views on the subject.
my stats are not good at all-a 2% five year survival rate. i’ve responded
very well to my treatment so far and am totally beating the odds because
i won’t be dead from my disease in march, a year after my diagnosis.
it took me several months to get up the courage to ask my doctor about
my stats. i never googled my disease because i knew i would rather hear the news from a person and not read it on a screen in front of me.
i was very happy that i finally asked. for me, knowing my stats has made things much better. i’m no longer in a limbo of not knowing what’s going on. i’m able to think about what i want to do with the rest of my life and how i want to spend my time. it took a month or so of feeling really depressed about the news before i was able to
start accepting things and moving on from there. i’m still in that process of
course but i’m definitely in a better place now.
“I don’t believe in the magical thinking that if you accept death it means it is going to happen to you. I have not heard many other people take this stance … ”
i totally agree with this kairol! i’m so tired of people telling me “not to say that!” or “don’t talk like that!” when i tell them about my stats. is not talking about it going to make it not happen? make it go away? wow, if i had that kind of power i wouldn’t talk about a lot of bad stuff so i could live a golden life! :)
for me, accepting things as they are yet keeping a positive attitude is what keeps me going. i’m not going to hide my head in the sand and pretend that i don’t have stage IV lung cancer that will most likely kill me, or build up false hopes about a cure being discovered before i die. (of course i hope that happens but i can’t assume that it will!) i need to talk about the fact that i’m going to die young with my family and friends because it makes it less scary for me in the long run. preparing myself both mentally and by getting my things in order has really given me a sense of peace and calm. and my positive attitude on top of that has allowed me to be very happy in my daily life.
December 17th, 2009 at 9:46 AM
Amy 27 - We need to print up your comment and give it to social workers as pamphlets they can disseminate to their clients at cancer centers. I’m so sorry that you are going through this. You seem to be doing it with your eyes wide open. I think it is so important that you’ve reminded us that their is a cycle to dealing with things - that you spend a month sunk in depression - which seems totally justified. And then you’ve come to another place outside of depression in which your stats are a reality that are helping guide how you spend your time and have encouraged you to get things in order. I hope that you are in that 2%, and I hope that if you are in the 98% that you continue to have peace and calm. Thanks for sharing your experience. You’ve really blown me away!
Regarding anonymous’ comment about survival rates being lower with depression - I’d like to read the study and write more about it. I am curious if it is untreated clinical depression, and for how long it lasted. And was the lower mortality rate be ause these depressed patients were non-compliant with treatment plans as a result of lack of motivation - rather than their negative thoughts killed them? 25% of cancer patients experience depression. That number is even higher for young adults.
I agree with you that being Little Miss Sunshine is not the answer. For me, the power of realistic thinking is the alternative to forced positivity. Realistically cancer sucks, we’ve gotta let that be okay, and we’ve gotta make sure that it doesn’t take over our entire lives forever. Like Amy27, I think if we embraced our depression and gave over to it, we’d move though and out of it more easily. Good conversation!
December 17th, 2009 at 4:31 PM
Here’s the link to the abstract of the article: http://www3.interscience.wiley.com/journal/122596161/abstract
December 18th, 2009 at 1:11 AM
Thanks for the link - Here’s a snippet of a review of the article from Science Daily:
“The investigators note that the actual risk of death associated with depression in cancer patients is still small, so patients should not feel that they must maintain a positive attitude to beat their disease.”
I think it is important to remember that their is a difference between clinical depression and feeling down in the dumps because you have cancer. It is also important to remember that there are many factors that contribute to clinical depression that may be causing mortality. For example, some people with lack of access to health insurance may experience severe clinical depression because of the obstacles they face around trying to get care. If they die from cancer - is it the depression that is contributing to it - or is it because they did not have access to drugs and medical care so death and depression were both side effects of having no care?
December 21st, 2009 at 2:15 PM
Great topic, Kairol…and it’s clear that there are many ways to approach a cancer diagnosis emotionally. I think it’s also clear that some approaches are more helpful to particular individuals than others.
One issue I think is key about this topic is understanding how the language we use creates a narrative that can belittle and disempower the person fighting cancer.
For example, I fall on the other side of the “positive attitude” theory than most of your responders do. Yet I find it crucial to their dignity and agency not to refer to them as “naysayers” or “negative nellies.” They are simply folks who choose to deal with cancer and its psychological ramifications in a different way than I have chosen.
In a similar vein, I find it belittling and disempowering to be referred to someone who believes (or worse, “finds comfort in”) in magical thinking. I have hope and faith…and I understand two things very clearly: I will die someday. It may be from Stage IV cancer of the colon.
When I (with great deliberation) made the decision to approach my condition with a positive attitude, it was based on the following question: “Which serves me better (me, Laura; not all cancer patients)-saying to myself that I am dying of cancer or living with cancer?” For myself, I choose living rather than planning my death based on group statistics.
I have found statistics to be occasionally helpful, but only when I keep firmly in mind that stats refer to a group of people, not to me. I didn’t come stamped with a “sell by” date.
I also find that the question we research (does having a positive attitude have a positive correlation with survival) may not be the full picture. I’d like to see more studies asking “What function does attitude (positive AND negative) present in the survivorship of cancer patients?”
January 8th, 2010 at 9:23 PM
In regards to the poor survival stats a lot of cancers still have, well I think if you’re unfortunate enough to have a poor prognosis, you need to accept it rather than clutch at straws. I don’t mean give up, I just mean realise that realistically, you’re probably going to die. I like this quote from Ingrid Bergman: “Cancer victims who don’t accept their fate, who don’t learn to live with it, will only destroy what little time they have left.”
June 26th, 2014 at 2:17 PM
I had a complete response to treatment for stage 3a non small cell lung cancer , I understand this is very rare , Does anyone know how often this happens with advanced cancer and what does this mean about my prognosis? please message me at Lynne Fusco Akers or lynne,fusco @gmail,com Thank u very much, I am a Christian who is hoping she has been healed by God, How often does it come back according to statistics and has anyone out there with stage 3a non small cell lung cancer had this happen to them, All of my TSS were in Tulsa, ok CA tx center where they specialize in lung cancer, I’m 54.
June 26th, 2014 at 2:18 PM
May God bless each of you, Lynne Akers