Feeling "fooled"...

Beesie · January 2012

Hmmm...... radiation oncologists deal with the current diagnosis of BC and the risk of recurrence from that diagnosis; they don't deal with the risks associated with the development of a new BC at some point in the future. So I wonder why your RO is even talking about the risks of a second primary. I wouldn't consider that to be an RO's area of expertise - and clearly it's not your RO's area of expertise.

I posted this in another thread the other day. It's the latest data from the National Cancer Institute on breast cancer risk by age (well, all but the data for the 20s - I got that from the SEER data). These risk levels are for the average woman but we of course are anything but average! So that means that our risk, having had BC once, is higher. Whether it's 50% higher or 2 times or 3 times higher depends on who you speak to. As I mentioned in my earlier post, my oncologist told me that my risk was about 2X the average.

from age 20 through age 29 . . . . . . 0.05 percent (often expressed as "1 in 2000")
from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
from age 40 through age 49 . . . . . . 1.45 percent (often expressed as "1 in 69")
from age 50 through age 59 . . . . . . 2.38 percent (often expressed as "1 in 42")
from age 60 through age 69 . . . . . . 3.45 percent (often expressed as "1 in 29")
from age 70 to end of life . . . . . . . . 4.44 percent (often expressed as "1 in 23")

TOTAL LIFETIME RISK: 12.2 percent (often expressed as "1 in 8")

.

One important thing to keep in mind about the data is that each age group represents a 10 year period, so annual risk for women that age is about 1/10 of the percent mentioned. The data tells us two things. First is that our annual risk increases as we get older. Second is that our lifetime risk goes down as we get older - there is no accumulation of risk. You don't face a risk for something that happened in the past; once you are out of your 30s, you no longer have to worry about the risk that you had in your 30s.

The word "remission" is interesting. The definition, according to the NCI, is: "A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body."

That seems pretty appropriate to describe the situation that most of us are in. And if we stay in remission until we die (at the age of 90 in our beds with smiles on our faces) we will finally know that we were cured!

barbe1958 · January 2012

Hmm, don't get it. If a total lifetime risk is 12.2% and I'm 50, wouldn't the odds go UP as each year passes and I don't get cancer? So not having cancer in my 30s DOES affect my odds this year. At first, I could get cancer in any age group, but as those age groups disappear, the odds increase in the remaining years, so in a sense, there is an "implied" accumulation of risk. How can our "annual risk increase" but our "lifetime risk go down"?

LtotheK · January 2012

Beesie, all of my oncologists gave me very thorough risk assessments for primary distant and local recurrence, as well as my chances for new primary tumors, and I asked all over and again. Radiation can cause new primaries, I asked directly about that, so for sure it's within their area of expertise, at least to some degree. My colleague who also sees an oncologist in a different city was given the exact same numbers about chances of new primaries once a BC diagnosis is given. My only point is, this is the information we are being given. Not saying it's correct, simply saying that credible sources are doleing it out.

Beesie · January 2012

Barbe, if you didn't get BC in your thirties, once you reach your 40s, that risk is gone. Look at the numbers in my previous post - those are the risk levels that the average woman faces over each decade of her life. In her 40s, she faces a 1.45% risk (over the whole 10 years of her 40s). When she enters her 50s, she no longer has to worry about the 1.45% risk from her 40s; now she faces a 2.38% risk (over the whole 10 years of her 50s). Add the numbers up from my previous post - the risk levels for all the decades of life total to 12.2% over one's entire life. At no point do you actually face the full 12.2% risk - 12.2% is simply the sum of the risk that you face at each point of your life (assuming you live to a ripe old age).

This is a concept called "leaving risk behind". Here's an example of how that works. If it's icy today and you go for a walk, there might be a 10% risk that you will slip and fall. Tomorrow you go for a walk again. But tomorrow is warm and sunny with no ice so your risk of falling is only 0.1%. Your risk tomorrow is not 0.1% + the 10% risk from today (because you didn't fall today). The previous day is over and the conditions that created the risk you faced on that day are past. You therefore leave that risk behind. It's the same with BC risk. The risk that is associated with our 20s and 30s is specific to the conditions of being in one's 20s and 30s. BC risk over those years is very low, because we are young, our bodies are working well and haven't started to break down, we haven't been exposed to as many toxics yet, etc.. By the time we reach our 40s, we have been exposed to more factors that might result in the development of BC. The conditions that led to a lower risk level in our 20s and 30s no longer apply, and as such, the risk level of those years is no longer relevant. The risk level that we face in our 40s is based on the conditions of being in our 40s; this is a higher risk level than we faced when we were in our 20s and 30s. The same thing continues as we age and move into our 50s, 60s, 70s, etc.. The risk we face over each of those decades of life is associated with the conditions of being that age - the conditions that we faced when we were younger are no longer relevant and the lower risk levels that we faced during those years do not carry over.

LtotheK, based on the info that my oncologist gave me, my risk averages to about 0.5% per year. I have read some articles that suggest that once diagnosed with BC, the risk to develop a new primary is in the range of 1% per year. Maybe that's what your doctors meant. 1% per year every year for the rest of your life - but it's not cumulative.

barbe1958 · January 2012

Okay, that makes sense. But what about the second question?

Beesie · January 2012

Barbe, to your question "How can our "annual risk increase" but our "lifetime risk go down"?" the answer is, it's just math! Wink

Here again are the risk by age numbers from the National Cancer Institute, but I've added in the average annual risk level for each of those decades (it's just the total percent risk for the decade divided by 10):

from age 20 through age 29 . 0.05 percent (often expressed as "1 in 2000") .005% risk per year
from age 30 through age 39 . . 0.43 percent (often expressed as "1 in 233") .043% risk per year
from age 40 through age 49 . . . 1.45 percent (often expressed as "1 in 69") .145% risk per year
from age 50 through age 59 . . . 2.38 percent (often expressed as "1 in 42") .238% risk per year
from age 60 through age 69 . . . 3.45 percent (often expressed as "1 in 29") .345% risk per year
from age 70 to end of life . . . . . 4.44 percent (often expressed as "1 in 23") .444% risk per year

.

So you can see that "annual risk" increases from 0.043% in our 30s to .444% when we are over 70. That's a 10 times increase in annual risk for someone who is 75 vs. someone who is 35.

As for "lifetime risk" going down, if you are 30, your lifetime risk is the risk you have ahead of you for the rest of your life; it's the risk that you will face in the decades of your 30s, 40s, 50s, 60s and beyond. So a 30 year old faces a lifetime risk of 12.15%. A 40 year old's lifetime risk is the sum of the risk level that she'll face in her 40s, 50s, 60s, and beyond; a 40 year old's lifetime risk is 11.72%. A 50 year old's lifetime risk is 10.27% (the sum of the risk of one's 50s, 60s and beyond). A 60 year old's lifetime risk is 7.89%.

It makes sense when you think about it. All the women in the world who reach a ripe old age who have not developed BC over their lifetimes don't suddenly face a 12.2% BC risk over the few years that remain in their lives. With only a few years left to live, their remaining lifetime risk is quite low, specifically because they have only a few years left to live.

Another way to look at it:

- Current data suggests that 1 in 8 women will develop BC over her life (i.e. 12.2% of all women).

- If we have a group of 100 women who are all aged 70, according to the NCI data above, we would expect that 7.76% of them will have already developed breast cancer. So of the 100 women, approx. 8 will have already developed BC.

- Of the remaining 92 women who have not developed BC by the age of 70, if they all faced their full lifetime risk of 12.2% at that age because they hadn't had BC yet, it would mean that another 11 would develop BC over the next 20 or so years until all the women passed away (12.2% x 92). This would mean that 19 of the 100 women would have developed BC (the 8 who developed BC before age 70 and the 11 who developed it after age 70) - 19%, or almost 1 in 5 women over the whole group of 100.

- In actual fact what we know is that of those 92 women who haven't had BC by the age of 70, only another 4 will develop BC during their remaining lifetimes. Those 4, plus the 8 who developed BC before the age of 70, equals a total of 12 women of the 100 - 12% or 1 in 8. And if only 4 of those 92 women will develop BC, that's the 0.444% risk in the numbers above for women aged 70+.

TonLee · January 2012

Clear as mud.

buwhahahah...actually I love the icy walk explanation....I'm always looking for ways to discuss statistics that makes every day sense like that

Awesome job.

otter · January 2012

Beesie, thank you!!! Once again, you've helped clarify something that seems fuzzy and illogical to many of us. I've never heard the phrase, "leaving risk behind," but it makes perfect sense the way you've explained it.

I think it's sort of like the "Monte Carlo effect" in gambling (the "gambler's fallacy"). That's the sense that, each time you pull the handle on a slot machine and don't win anything, the chances of success on the next pull must be higher. Or, for those who prefer roulette: after the ball lands on a black number 4 times in a row, the odds of a red with the next spin are high.

But, those odds are not cumulative. It is so hard to resist making assumptions like that.

otter

annettek · January 2012

You go that right TonLee...Beesie, you did a great job putting that together. After careful consideration and an abundance of reading everything from the NCI, NCCN and just about every other acronym agency including obscure studies from small eastern european countires in the middle of the night...

It all leads me to this statistic when dealing with humans each carrying their own unique genetic codes, lifestyles, etc....

Everyone of all ages: crapshoot 100%

I am not making light of anything and obviously there are sound conclusions drawn based on empirical evidence drawn from studies on tens of thousands of women....(although some major tests use a much smaller pool than many realize) And it can all make some sort of sense and offer some sort of reassurance I guess, until it does not. I don't advocate them abandoning research and trying to assemble some sort of forecasting, but that is all it is, forecasting. It is part of what I do for a living from a business aspect. Even based on solid numbers, apples to apples comparison (which we all know is not the case in breast cancer studies-as stage 1 grade 1 in two women can vary wildly) it never fails to amaze me when a trend or a forecast veers off in a totally different direction. The solace I draw from this fact is that it can veer to a positive place. Against all odds and available statistics. I have seen this proved over and over again, in my work, in my life with family members and on this board. In regards to BC, I have met with long term stage IV women who absolutely astound me in their defiance of odds That is what keeps me knowing that at least for myself, I have to proceed with cautious optimism, watch for warning signs, learn as much as I can (but take a break from information overload now and again) and if met with a wall, try to find a way to get over or around it. Encouragingly, the emerging trend that seems to be taking root in the industry in regards to cancer treatment as a whole entity, is that *a cure* per se cannot be found, as obviously there is no magic bullet to treat a disease so varied and insiduous; the answer lies in the treatment of the individual. The development and refinement of new drugs will continue obviously but the approach and use of them will be different. Which a lot of individual doctors already do in the off-label approach. Ah, as I said somewhere already, the crapshoot theory is the only one that appears to be factual. That's just my opinion.

barbe1958 · January 2012

In university I do recall seeing a course called "Statistics 101". To me it seemed a silly choice, though for some reason, my sister, going on to be a nurse had to take it. I'm slowly getting it.....

TonLee · January 2012

Barb,

I took graduate courses in statistical analysis for my Masters. I can say unequivically....statistics ARE NOT easy for linear thinkers...they are so convoluted. I have to re-read statistical definitions (thank god I kept my books!) when I look at trials/studies or it's all just blah blah blah.

LtotheK · January 2012

Yes, in terms of the whole individual treatment, we have a long way to go in managing the emotional implications. This is part of the reason the numbers don't really matter to us on one level. I had my 6 month mammogram two weeks ago. They thought they found another lesion, and I melted down. And I mean, PTSD melt down. I'm a rational, straightforward individual, and there I was having a panic attack, complete with hyperventilating and uncontrollable sobbing. I'm having an MRI today for lower back pain, and part of me is already planning my funeral.

Cancer treatment asks us to live in a world completely in denial about death. Even those with great prognoses can't ever entirely escape the fact the ongoing fight against death is now a very real and tangible part of our life.

jacksnana · January 2012

This is such a great, informative thread. My surgeon also used the word "cured" and I think at the time it kind of helped me through those initial stages and probably helped me get through the physical healing and chemo, etc. At least for me, I was nowhere near ready to know and understand all of the stuff I know now. On the other hand, my MO is kind of just the opposite, but I guess it's their job to always be looking for something. For me, dealing with the emotional component has been by far the really hard part. My guess is that will go on for most of us for the rest of our lives. We learn to cope better maybe, but that fear is always there.

LtotheK, I am right there with you - just mention having any kind of test and I come unglued. Best of luck today with your MRI - saying a prayer for you... Veda

.

TonLee · January 2012

My BIL tried to commit suicide this weekend. Pills.

Everyone is concerned, obviously. Can't say we didn't see it coming. 4-5 DUIs, 45 yr old male twice divorced living at home with mom and domineering father. His adult kids have nothing to do with him....Drug and alcohol addicted....handed everything his whole life (cars, houses, jobs, money, etc) and has the worst case of "woe is me" I've EVER seen.

It's my husband's brother but I can't help but get ANGRY.

I fight to live. Cut off/out body parts! Take poison into my body, lay still for radiation. All for a shot at MORE TIME, more LIFE.

And there he is. In perfect health. Willing to throw it all away because he's sad. Well boo f-ing hoo. I don't have patience for it. And I wonder, really, pills? How serious could he be? I can think of a number of more definite ways to do it. More final. And taking a bottle of pills and then going to his sister's house (to make sure someone found him in time) is NOT it.

But how can one benefit from a pity party if they're dead? Better to almost do it, then the benefits just roll on in.

Or so he thinks.

Obviously cancer has stolen more from me than my health. Undecided

WinnieThePooh · January 2012

I have to admit that this is all still too hard for me and I am sad much of the time. I feel scared and depressed, and thankfully found a therapist to help me (and ironically she is BRCA positive)

Anyway, when my surgeon and oncologist talked about cancer with the word "cure" attached to it, I was shocked! I believed that all cancer was a death sentence... Now I believe cancer is sometimes cured, but unfortunately, we won't know if we've been cured until we die as old ladies (and men) of something else! That is hard to live with... at least for my personality type!

I had an interesting discussion with my surgeon whom I communicate better with then my onc. He passed along some information to me that he took away from the American Society of Breast Surgeons annual meeting. (I happened to email him while he was there so it was hot off the press when he responded!) At these meetings, they review all the new and "hot" topics.

He told me that the biggest thing in breast cancer over the last few years is the push from treating stage to treating the biology of the tumor process. It's the biology of the tumor that determines the clinical course; not whether or not there's nodal involvement or whether the tumor is 1 cm or 10 cm. Thus, old standards of measurement and prognosis do not have predictive values we once thought they did. TheInternet is replete with really old data. We treat "biology".
So, it's not whether it's stage III or stage I. There are patients with advanced disease who simply are "living alongside their tumor". It doesn't change their lives. Even though their classical stage is high, the biology of the tumor (how it acts) determines their clinical course.

Maybe this explains why sometimes we see a stage I go to stage IV or a stage III (one of my friends) be 21 years out, or a stage IV be living life after 10-15 years?

I don't know, just wanted to share in case this information could be of help to anyone.

Best,

L.

lsilang · January 2012

Hi All,

I think this is my favourite topic too.. It's got all the feelings + and -. It really doesn't matter what stage it's caught. Our quality of life will never be the same again. We can never let our guard down. Cheers to us!

LtotheK · January 2012

Thank you so much, Veda. That means a LOT!

Winnie, great way to look at all this. Oncotype is of course one of the ways tumor biology is being managed!

WinnieThePooh · January 2012

You are right... that IS what Oncotype reveals... the biologicial activity of a tumor... (light bulb just went off) Is this a number? Would this be on my pathology report or does onc have to test for it specifically? I've seen other people discuss numbers...

L.

LtotheK · January 2012

Winnie, it is available for Stage 1, ER+ patients, and more recently, for node-positive patients with I think fewer than two nodes? One thing I have real faith for in the future: they will get better at these genetic tests. They will become available for all stages. In fact, as you so correctly point out, the staging process will probably be replaced.

WinnieThePooh · January 2012

Yes, I agree that the staging process is outdated and will be replaced, but that is all they have right now. It would be interesting to see statistics according to biology instead of stage. When I first realized, for example, that Stage 1 (or whatever stage) was combined with every known type of biology, ie. triple neg., BRCA pos., ER/PR +, HER+, etc. etc. I wondered how it could be accurate...

ptdreamers · January 2012

LtotheK, Good luck with your MRI. Hope it turns out well. My first mammo after treatment won't be until July. Thankfully this is the case. I need time to heal from the abuse I have just finished. I am scheduled for my first Prolia(Xgeva) shot next week. Has anyone had one? If so, anything I should do?

JulieLynn · January 2012

TonLee - I'm going through exactly what you are. Two days after Christmas my SIL tried to commit suicide. Of course afterwards when she was embarrassed she said she didn't mean too, just wanted to sleep and took only a couple of pills during the day which isn't true because what she took shouldn't have put her in ICU on a vent and looking at her length of stay, the doctors didn't believe her either. So, after I was relieved she was going to be okay, I got pi$$ed!! We lost a 19 yrd old neice in 2010 and she was willing to put her entire family and her sister (the one that lost the daughter) through another family funeral, not to mention her parents who are not in the best shape either. She has four kids at home - Who did she think was going to help take care of them if she was gone? Us in the middle of tx? Of course, we would have done whatever needed to be done but while I'm doing everything I can to make sure I live a very long and happy life - just like you missing body parts, poisoning our bodies, adding things in that shouldn't be there, wondering if I'll be here to see my boys get married and become dads - she's trying to get out of her life. Of course, this is the same family that still has never asked me how treatment is going, what my prognosis is, how surgery went - No card, no text, no message on FB, no phone calls....absolutely nothing from her or my MIL/FIL. Yet, I braved all the germs in the hospital to go see her so she would know we cared. Don't know why I bothered. But, thank you for your post - Again, it's nice know that I'm not the only one facing these things in this journey......

Sorry for the long rant but THANK YOU for letting me do it!! As you can see, I have some "issues" I need to deal with when it comes in the in-laws. Undecided

TonLee · January 2012

Julie,

Thanks for your post. I was wondering if I should put that out there, but meh, I'm pretty open.

Suicide is so freaking selfish. I start growling if I think about it too much

This is the side of the family that I overheard one of the females say..."well at least R is young enough to remarry when Tonlee dies."

Yeah.

In laws.

Gotta love them.

(My FIL/MIL are great. They've always been good to me. So I am lucky in that regard.)

LtotheK · January 2012

TonLee, that makes me want to cry and die. I am so sorry you heard that. Did you say anything to them???? Truth is, I'm sure a lot of people have thought the same about our partners.

I definitely think suicide is really selfish. But...in cases where people are suffering longer than necessary, I do believe in euthanasia.

JulieLynn · January 2012

OMG - I am so very sorry you had to hear something like that! I can't believe anyone would even say it! However, I think my in-laws probably think the same thing. They have said many times to whoever would listen (but never to my face) that I am not part of the family (we've been married for almost 24 years!) but the husband of the SIL who just went through her ordeal has actually physically and mentally severely hurt other people in the family. I tell ya, they just take all the fun out of dysfunctional. I really so glad you shared your story....I'm not alone out here! Do you have kids? Did they hear that too? I hope you can put as much distance between you and them as possible - This is the absolutely last thing you need, especially now. They should be surrounding you with only positive and happy thoughts and if they can't do it, then they need to keep their mouths shut and as far away from you as possible. I know, that's easier said than done sometimes but I'm hoping that everyone else in your life has been amazing and supportive!!!

TonLee · January 2012

LtotheK,

My aunt died of lung cancer complications 5 days before my diagnosis. (She raised me, so was like my mom.) At the end, she didn't want artificial anything that would prolong her life IN THE HOSPITAL. She said she'd rather be dead than wasting time lounging around making the hospital rich. lol

We honored her wishes. But it was hard.

And as for me overhearing the comment from an in-law, she thought she hung up her cell phone but she didn't. She said it after calling to "check on me" (ie, feed the gossip mill). It pissed her off to no end that every time she called I said I was "fine."

"Isn't chemo making you sick?"

"Nope. Fine."

"You lost your hair?"

"I cut if off. Very liberating. Fine."

She hated that I woudln't let it become a woe is me conversation.

"If you ever want to vent to someone, I'm here for you."

Uh-huh. You and your 25,000 FB friends several of which have been interviewed for my position as my husband's wife! lol

I haven't seen her since my dx..they all live several hours away...but when I do....I'll think of something creative, and fun

Still I always hear that "ain't you dead yet?" tone....cracks me up.

LtotheK · January 2012

TonLee, there is one thing I do truly believe: it may take a while, but people do get what they deserve. You are a beautiful class act. Your SIL's time is a-comin'.

SelenaWolf · March 2012

I was lucky in that my doctor jumped on my concerns when I found the lump and I was fast-tracked through the diagnostic process. From finding the lump to surgery took less than 6 weeks.

I was, also, told that my lymph nodes looked "clinically negative" after a number of tests, but dissection showed that one was positive for cancer. Micro-mets can only be determined by microscope; it cannot be "seen" by the eye or by ultrasound because it's sometimes as small as just a few cells. So, I'm glad that my surgeon - while taking into account the "clinically negative" lymph node diagnosis - did a Sentinal Node Dissection as a matter-of-course or my one positive lymph node may have been missed.

Doctors can tell a great deal from the tests they do, but they - often - cannot be sure exactly what is going on until the Pathology and all the test results come in. And, even then, there are no clear answers. I had a negative bone scan, but my oncologist explained that - while this is a very positive sign - the bone scan cannot pick up a few stray cancer cells, which is all that is needed for cancer spread. We are limited in cancer treatment because of our technology, but - hopefully - it will catch up soon.

There is no CURE for cancer yet and I feel that any medical professional that tells you so is not being realistic or truthful. If you reach your five-year milestone, you are "cancer free" not cured. It is very different. The best we can hope for - right now - is to stop cancer in it's tracks or to beat it back into remission. Unfortunately, long-term cancer survival is sometimes just the luck-of-the-draw. Thinking of breast cancer as "curable" lulls us into a sense of complacency and doesn't make us clamour for a cure. While new- and better treatments for improving long-term prognosis are very, very welcome, I don't want researchers to focus on just extending my life or "managing" my cancer. I want a cure.

TonLee · March 2012

Selena,

Don't you find that whole micromet being clinically "negative" VERY frustrating? Your onc says the bone scan can't pick up stray cancer cells (lest you get too comfortable)....it's important to know that because it only takes one cancer cell to start a war....and yet when micromets are found in a lymph they're clinically "negative." I know women with micromets in two lymphs and are staged node "negative"....um, I'm sorry.....They can call it negative all they want. Cancer is cancer is cancer.

Alicethecat · March 2012

Hi Annette

What a wonderful, philosophical post.

Alice the Cat

Feeling "fooled"...

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