Reflections on Statistics : I stay away... - SHARE Metastatic ...

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Reflections on Statistics

Snowcone16
Snowcone16

I stay away from reading statistics about MBC. Why? Here is why:

-someone is only counted as stage 4 if they began as stage 4. I was initially diagnosed stage 2. 16 months later they found metastasis but I’m still technically classed as stage 2 in statistics.

-this technicality makes stage 2 cure rates (which are based on 5 year survival) look better. And of course impacts stage 4 stats.

If you read stage 4 stats, it will usually say that there are 199,000 living w MBC. But I realized if the number was that low that there wouldn’t be all these commercials and pharmaceutical adds to promote meds. Figure-it would mean about 150k we’re living with Hr+ MBC. I have an autoimmune disease of my liver which impacts 180k people and I’ve never once seen a commercial for the new meds that exist.

Survival rates: again impacted by who is counted. Many new meds. Today’s 5 year states are based on data started in 2012.

Then...hospitals know but don’t post their success rates for each cancer. Cancer centers can promote they are #1 but it could be for all cancers, 1 specific like lung, cervical, etc. a cancer center could have a 95% stage 2 success rate but what is their stage 4?

Just some thoughts I wanted to share. Either way, I feel obligated to increase awareness on MBC. And pink ribbons don’t bother me, I like them. They help to start the conversation.

39 Replies
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Yeah, I know what you mean about avoiding stats. I sort of have a similar story. I love all the love and encouragement here. Love and prayers to you all. Take care all, be with loved ones when you can, we must live life. Lately I have started to struggle some with depression. My two young adult kids have issues. I look back on my past mistakes as a parent. I decided not to get too wrapped up with that, to acknowledge to my kids that yes I did make some mistakes but I did the best I could at the time. And to go back to self-care, with what I should be doing. Anyway, we will focus on the positive.

nstonerocks
nstonerocks in reply to SusieIM

Hi Susie

I have a young adult son with issues. It has been incredibly stressful. It started pre diagnosis. a lot of times he is thoughtless and inconsiderate to the point of bringing me to tears. In private of course. I was not a perfect parent. Who is? Certainly not abusive and my husband and I always put him first. I should have parented him differently, but I realize you can’t go back. He is an adult who, for the most part, refuses to accept responsibility for what is wrong in his life. I stepped back so I can have some quality of life and joy in my life. I know what you mean. It’s heartbreaking but you have to save yourself. Maybe someday they will come around. I’m there for him but I have set boundaries. As if there isn’t enough to deal with. Sending you a big hug in solidarity! 🤗

Snowcone16
Snowcone16 in reply to SusieIM

Hugs and prayers. I know the first day after my scan this time, I was all regretful about “I should have been a better mother”. But, after that cloud lifted (it does!) - I decided to focus on what I could control.

I think, in our lifetime, we will see huge leaps made w MBC. I compare it to in the 80s when I remember hearing HIV/AIDS and now nothing...it’s manageable.

It sounds strange but I said to my husband “I would hope everyone could experience this to some extent...to know how important family is and how precious our time is...of course, them after realizing that, I’d want them to be cured”.

❤️

It is true that this horrid experience has opened my eyes and I hope my heart. I took so much for granted before, especially the people in my life. I catch myself a lot, but I really get it that it’s the people in our lives who matter. Stuff comes and goes.

I dont focus on stats and I avoid pink ribbons and October. It’s overwhelming living with what is classified as a terminal illness. I am approaching the 5 year “deadline,” and I am doing well on meds, so I think I’ll get to year 6. Stats send me into a tailspin . They are depressing, and while there is a hard reality to mbc, I have heard of so many women surviving past year 10, pre-ibrance, that I set my sights on that. I try to look ahead, not down. I hate October. I hate hearing about breast cancer so constantly and having women talk about how they beat it and “kicked it’s @ss.” that was a celebrity quote. Don’t get me wrong. I know the publicity and advocacy has brought breast cancer to the forefront and provides funding for services and research, so is a great thing in terms of finding a cure and helping women and men with this biotch of a disease. I am thrilled when women like my mother, 2 aunts and cousin were cured. God bless every single person who is can walk away from this miserable diagnosis and get on with their lives. Perhaps I’m just not strong enough to deal with the entire picture, but as someone for whom a cure is a dream and death from mbc seems likely, the pink ribbon And October are ironic reminders that I cannot do the happy victory dance. I did not kick cancers @ss. It kicks mine. I take my meds, get labs and scans and keep my appointments. Then I focus on living my life. Not quite the same experience as those who can celebrate a cure. I probably sound bitter. I don’t mean to be. It’s just that I don’t feel I have the same disease as people who have kicked it’s @ss. That’s why I don’t go to mixed support groups and do value the support I get right here. Getting ready to hibernate from all the pink hoopla for a month and plan my next vacation, drink my green drink and meditate to stay sane. ♥️ 🙏 💫 And yes, pray for a cure. In our lifetimes.

I signed up for some wellness conference. There were a couple mixed options but I chose to go to one exclusive to MBC. For me, it’s because I remember how I felt those 16 months as stage 2. I was scared but nothing compares to how deeply scared my moments are now. And when I was stage 2, I wouldn’t even read about stage 4—didn’t want to know about it! And there were 3 I know that had passed away. And I kept trying to compare what I did differently “ it won’t be me”.

I know there are many that have the bitter (lack of a better word!) feel. I guess for me I think “it all starts w stage 2”. October is focused on early BC. But, we know from experience that more and more are joining our club unfortunately. So, for me, whatever it takes to start the conversation. I’ve got the license plate, pink ribbon magnet “survivor”. We are surviving. Warrior/fighter mentality works for a lot of people. But I know I’ve bit my tongue when I hear or read “lost their battle..”. None of us are losers.

Well, that’s my ramble. Hugs.

I hate that phrase too. We aren’t losers. And if some “beat it” they were lucky, not a better fighter than we are. I started stage 4. I imagine I am the worst nightmare for those who have “beat” it. When I die, I forbid anyone to eulogize me as having lost my battle. I lived with it the best I could and had a full life like everyone else who dies, and everyone dies. I was so depressed when a work colleague passed of mbc a few years after her diagnosis. Took a lot of work to get back to “my new normal” after thAt. We all handle things differently. My best friend, whose sister died of mbc, is a pink warrior. I contribute to her runs, but don’t join her. Good that you embrace it and can deal with it. I lurk and will be hiding in October! Hugs 🤗

MMMP
MMMP in reply to nstonerocks

I too hate the pink ribbon!!!

So well articulated! Thank you!!

SophSP
SophSP in reply to nstonerocks

I can understand where you are coming from, Nstonerocks. I know a lot of women who had early stage breast cancer and were cured of the disease. So I have had them telling me their stories and trying to give me a boost. They mean well, but they do not "get" my situation. My situation is not the same as theirs. I am going to be having treatment for the rest of my life, which is not an easy thing to accept when you are in your 30s. It sounds like you are in America. In the UK, we have Macmillan coffee mornings this month, which raises money for Macmillan cancer services. I plan to attend, as I can handle coffee mornings better than wearing a pink ribbon, running a race or anything else that would be too much for me. Yes, success stories are great. But we are living with a chronic, long term illness and it can feel a bit overwhelming when you come across people who have been cured of the disease.

Take care,

Sophie x

nstonerocks
nstonerocks in reply to SophSP

God bless you. There’s never a good age to live with mbc, but you are very young. I believe much better treatments, if not a cure will come in your lifetime. Yes, people mean well. It’s not personal. But the “movement “ should reflect on the two very different scenarios and be sensitive to our reality. I saw the saying, “More for 4,” and I strongly agree. I would have a difficult time emotionally “coming out” in a mixed group. I admire those of you who can put a face in mbc in that way. 💕

SophSP
SophSP in reply to nstonerocks

May God bless you too! I am confident of a future cure too! Let's hope many of us will get to benefit from that. My local Macmillan centre is having a function on the 21st, to include talks, and then a buffet lunch. I was invited along to a similar event earlier this year right after I was diagnosed and I was not ready to attend. But I want to this time. I met the chairman and he is also a cancer patient.

I also think it is important to try and take care of my health the best way I can and to try to have a positive attitude. I was in tip top condition before this diagnosis, so whenever doctors, nurses or others ask if I am allergic to anything, I joke that I "only have cancer".

I had my first reflexology session today, I have seen a physiotherapist and will go back again later this month, and I called a dietitian today to find out whether she has any classes on offer to cancer patients. I am interested in 1:1 support tailored to my specific needs, rather than group sessions that may not relate to me. Perhaps you can also look into ways to help you feel better, whether it's massage, reflexology or something else. I respect the expertise of my oncologist, but she only sees one part of the picture. I am working on other aspects of my life that also need attention.

Enjoy your day!

Sophie x

nstonerocks
nstonerocks in reply to SophSP

Sophie

Check out Kris Carr’s website. She is a stage 4 cancer patient who has written books, has meditation tapes and has spoken at many venues. She is coming to London soon. She is a bit irreverent and sassy, but great info on healing mind body and spirit for all, not just cancer patients. If you can get to see her in London I think you would love her style and message.

I looked it up. The dates are September 28 and 29. It’s not just for cancer patients but after u check out her website you might want to hear her in person. Title of program “You Can Do It.”

SophSP
SophSP in reply to nstonerocks

Thank you! Yes, I have heard of Kris Carr. I have looked at her web site and I ordered one of her books recently. She is certainly an inspiration to be living with stage 4 cancer and thriving. I am not sure if I will be able to get down to London for her visit, but we shall see. Her recipes look so tempting! I stopped by the health food shop in town to pick up a few bits today, but it was closed! x

kit5
kit5 in reply to SophSP

everyone should remember that the horses are not all in the gate! they may think they are "cured" but their cancer could come back. they just got lucky. i too hate the term "survivor" - like people who didn't get so lucky were some sort of loser... we are actively surviving cancer. and those warrior boost stories are a bit much...but that is how some people deal with their story...just keep living your life day to day. and honestly, when i hear some of the stuff other people go through, i think "i'll take my mbc over that!". no one gets off of this planet unscathed. but we all have hope and amazing new options showing up every day!

nstonerocks
nstonerocks in reply to kit5

It’s true. You really get it when you’re dealing with this.

lynnhbtb
lynnhbtb in reply to nstonerocks

I agree and understand your frustration with it all. Glad we have a safe place to express our true feelings and not put on the happy face all the time. xo

SophSP
SophSP in reply to lynnhbtb

Yes, you're right! We can't always be chirpy and put on a brave face. We have down days and people should understand that we have a lot to cope with. x

I’ll be sending good intentions your way. It takes a lot of stamina to get thru scans and wait for results. Wishing for great results. Glad you unfollowed that account. We need hope and positivity to stay strong and live our lives fully.

Thank you so much for this topic, I read the statistics last week and I cried for two days. I don't know why I waste my time knowing they are not accurate. I have young children at home and I try to enjoy them every day. I hope and pray a cure is around the corner. Stay strong, this is my first yr w bc awareness but at my job we celebrate the entire month. God bless you

Thanks for sharing; really provokes thought about how numbers can be manipulated. 👍

I am having my first scan since I've been on Ibrance and of course I'm nervous! It is what it is! I try to keep positive and count on the "master plan" for me! We all need to keep fighting this ugly disease. Someday maybe in our time there will be a cure! We can only hope and BELIEVE! God bless us all!

I try and stay away too as they are just statistics and a reminder. This is the only site I try and go to regularly because we are all in the same boat. Are stories may vary a little but in the end we are in the same boat. I am trying to focus on today. That's easier said than done sometimes. Going back to work full time next week and I know that it will keep my mind busy. I have struggled so much over the past 4-5 months and am trying to re-focus and stay positive and to much reading about MBC brings me down. And for those of you who hate October, I do too. Just a reminder everywhere I go or watch on TV. I feel I should feel differently and always think I am going to do the Komen walk/run in my area but then nope, don't want to do it.

I just want you to know how much inspiration I get from you all and that's perfect for me.

Hi Snow! Love your name. I agree with you about stats. I think the medical/science community does the best it can with them, but they don't truly and accurately reflect numbers of actual people. Plus, my problem with statistics is that they don't represent a person's actual experience and/or response. I believe we are ALL way more than statistics and numbers on the page.

My husband asked me recently how I felt about the ads on TV for MBC. I had to really think about it. I guess it's just a reminder that, Yep, I'm one of them. I don't like hearing all the scary side effects in the fast-talking woman's voice at the end!

BTW, I've been Stage IV from the get-go -- back in 2012.

And, the pink ribbons, at least it does bring attention, but so many people think breast cancer is a one and done -- get your lump removed, or get chemo and then go on with your merry life. For some, yes, unfortunately, for many of us on this board, that's not how it's worked. I know there's a MBC day or maybe even month, but they don't have the exposure that pink ribbons in October have. I think the pink ribbon campaigns need to say, okay, you're aware of BC, now let's educate and inform about the rest of the story. The thousands of us who are living with side effects, continued treatments and ramifications of those treatments on a daily basis.

Okay, I've ranted enough. ;-)

Blessings to all!

Lynn

nstonerocks
nstonerocks in reply to lynnhbtb

Live the reference to one and done 😊

MMMP
MMMP in reply to lynnhbtb

Well stated!!

Cancer statistics get misused alot, possibly more than used as they should be! Survival stats are gathered for purposes of health care planning, not to be applied to us an individual patients! Even alot of doctors, including oncs, don't understand this! I hope nobody thinks that statistics is a popular course at colleges and universities! LOL When I was first diagnosed, I did not go looking for stats, but I could not totally avoid them when I was out on the net looking for info! At that time, 2004, with denovo bone mets, five year survival rate for mbc was around 22-26%, depending on what stats we looked at. But it is and was a total misuse of that number to think that any one of us had that likelihood of living five years. The numbers are pulled down by those with wildly advanced mets at the time of diagnosis, those with highly aggressive cancers, and those who just do not have the resources to participate in treatment in a consistent manner. And I have since learned that those numbers are only accurate for populations of at least 10,000 people. And that also means that they are absolutely not accurate for a population of one, meaning me or you! If your onc quotes stats to you as though they are predictive for you in some way, know that they do not really understand statistics. They may be a very good onc, good at assessment and treatment, but out of their depth in stats!

Snowcone16
Snowcone16 in reply to PJBinMI

Fortunately, my onc never survival rates. If she had, I had every intention of leaving the practice after the appointment. ❤️

Thanks for your insights into the stats. I think it is a hard thing for them to do accurately but I appreciate you opening our awareness of the disparities!

I hate the meds ads, even before getting MBC but now more then ever. The mute button gets used a LOT. Seems that 80% of ads are now for drugs. Imagine how much money they spend on them!

I also have always disliked the whole Pink ribbon thing. Seriously I don't know what all the ra ra is about. The simple fact is that there is no true cure for cancer. Or else those of us "cured" would not later get mets. It is simply dormant, sometimes for decades. Also all those products that "raise money for cancer" ....half of them at least are toxic products. It's a joke. It makes me cringe. Not to mention that if you read up about it, only a small percentage actually goes to research. So no, I do not enjoy pink month.

SophSP
SophSP in reply to 13plus

I don't like to look at statistics. If I dwelt on them for too long, I would probably feel really depressed. Are you in America? We get cancer ads here in the UK too, but they do not focus on promoting drugs. I used to mute them, as some were so graphic (showing people having scans, a picture of their post-surgery body etc) and I still have a bit of a hard time when I see them. But the message is mainly positive, such as "A granddad with cancer is still a granddad". x

13plus
13plus in reply to SophSP

Yes, I'm in America.

Susan Komens salary was about 600k. According to the stats I could find about 20% of the Komen money goes to research. I don’t mind anyone getting a fair salary. That seems a bit much. The drug companies, it’s discouraging. Again, I can see needing to pay decent salaries and recoup the research, but the older I get the less faith I have in corporate America and their friends in government. Barak OBama did away with preexisting conditions and now it seems like that might be on the table again. Oy. I ask, why can’t people just do the fair and right thing. Then I go drink kale or meditate and try to be that person. Not easy.

Susan Komen org was closed down in Arizona for misappropriation if funds. I think it does some good with raising awareness, creating conversations. But I am pretty skeptical of the org.

it is NOT terminal! i had three oncologists say "we consider this a treatable disease, like diabetes or high blood pressure". it sucks, and it can be depressing and scary - but not a death sentence.

nstonerocks
nstonerocks in reply to kit5

it may be chronic for a lot of us. When I was first diagnosed my surgeon told me to get my house in order. I wanted to run out into traffic. My oncologist has a different approach thank God. I just try to be present every day.

SophSP
SophSP in reply to kit5

I like your attitude and the attitude of the three oncologists you spoke to, Kit. My oncologist has basically said the same to me, and when I look at those who are diabetic, epileptic, or have some other chronic health condition, they must also deal with treatment every day for the rest of their lives. That makes me cope better. x

Snowcone - I'm keenly interested in what you are saying. If I understand correctly, you are saying that the stats are overly optimistic with regard to how staging is counted but pessimistic (i.e. 2012 data) re: prognosis? I, for one, wish there were more and better stats, to give us clarity and some direction re: what helps, what doesn't, e.g. Unless big pharma has a vested interest, very few studies are conducted. Plus, a little predictability would be nice, i.e. something more individualized re: the course we are likely to take. Or am I misunderstanding, i.e. you are just saying, screw the stats, which would be completely understandable? :) And true, since the stats are flawed.

BTW, I just heard on NPR that some health systems are beginning to use AI to understand how diseases progress and the best treatments. The NHS is a leader in this; unfortunately in the U.S. there is talk, but no funding. Perhaps if the stats were more complete we would find them more helpful...they would certainly be more statistically reliable...

How are you? I haven’t seen any post from you in awhile. I hope all is well!

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