Take the Fright Out of Breast Cancer™

Sara, always happy add a little humor. This subject is dark enough.

While we canhappily get sidetracked here, we're obviously keen to hear what is happening with this frightful campaign.

Any news from upstairs Mods?

I think TravelText has basically said what I feel. It's great that you are willing to look at this...thank you for that.

For me, personally, changes in copy are a bit insignificant compared to the branding "take the fright out of", used with spooky "B movie" font. I honestly believe you need to change your logo and URL entirely; anything less doesn't address what I believe is distressing most of us. I hope you're changing the marketing packaging . Thank

Although I'm glad the Moderators have made some changes, but overall I agree with both Meow and PoseyGirl.

Also, where is the data that fear of breast cancer or fear of treatment decreases percentage of women getting mammograms? What I can find in the research actually suggests the opposite. Women more afraid of breast cancer are more likely to get mammograms. I'd appreciate knowing the background of such an offensive campaign: is this tactic grounded in knowledge or is it just something somebody came up with?

My impression from BCO is that one of the main goals of the site is to promote mammography. While not going into the controversy over whether mammography is really very helpful, I want to point out that the recent research I found identified fear of having to pay for it as the major barrier, not fear of the procedure or treatment of cancer. The other factors I find: doctors not mentioning it, individuals' overall burdens of psychological distress, time, travel/access, having more children in the household. Finally - mistrust of the healthcare system, fatalism and the related fear of learning a diagnosis - aren't as simple as being afraid of the procedures. We have solid evidence that to this day people of color do not receive health care equivalent to whites in this country, and hospitals that would not admit people of color are not that far back in memory. The cultural belief that the medical establishment may at best not care about you and may at the worst be trying to screw you is a natural product of our history, not individual women's irrational fears.

So where is this even coming from? A marketing agency? BCO is insulting us by equating our very reasonable fears - sometimes terrors - with the fun spookiness of Halloween, which is fun because we know the scary thing isn't real.

What cancer did to me is real. Had I known what would happen, I would not have been any less afraid.

That's interesting ksusan. The fear many of us have here can't be resolved by behavorial change. And any fear of breast cancer instilled in kids is a fear that can't be resolved by them.

ksusan, that may be a model, but none of the research I can find on why women don't get mammograms suggests that fright is a major reason. By far the one that comes up most often is being afraid of having to pay something. Models are fine, but then they have to be validated in the situations in which you are using them. What I am asking them for is where they have found validation for this model in this situation, because I can't find it.

Like many Stage IV people, my DX wasn't from a mammogram. My cancer was discovered unexpectedly. I was 0 risk with 0 history of any type of cancer in any family members. I had an MRI of my spine to confirm that I had one or more herniated discs. THAT is how my cancer was found. No herniated discs, but a moth eaten spine. A spinal biopsy showed the cells to be Metastatic Breast Cancer.

FOUR mammograms at two different facilities could not locate the primary cancer in either breast. An NCI hospital with more advanced equipment was able to locate the micro tumor that was the cause of my widespread bone mets. Bonus - I have never had elevated tumor markers, something that is not as uncommon as I once thought.

Would a routine mammogram had made a difference? No. Mammograms are limited in their usefulness and IMO cause more false positives than true ones. THAT is scary.

We all need better and more accurate ways to find cancers hiding in our bodies. More importantly we all need effective long-term treatments without harsh SEs. Ultimately, we all need a cure!

BCO gives us a voice. BCO advocates for us.

But.....

The website is a mess to navigate. Most members stick to the forums and never see the announcements made by the Mods.

The "front-page" of the site does have some useful information. Most however is brief, vague or terribly outdated. Studies with very little scientific evidence using very small numbers of test subjects are touted as breaking factual news.

I am looking forward to the much needed redesign. My requests to the powers that be are :

* More input from NCI affiliated specialists

* More information on local/regional advocates and services available for BC patients and their loved ones

* Password protected forums for registered members to protect our privacy and to prevent other websites from farming us for information. Our medical discussions are now regularly showing up on other supposedly trustworthy information sites. Not BCO articles - we evidently are all the "real experts".

* Leave the "Worried but not yet Diagnosed" and other newbie forums open to all.

* Ask for more member input on the discussion boards - where the requests will be seen

Please Mods, let us all work together. BCO is a true lifeline. Let us have the opportunity to support you as you have us.

With no more Halloween wreckage please.

interesting discussion re: barriers to getting mammograms. I think they are somewhat different in the US, as in Canada, we all have ready access to mammograms. These are the barriers I see here, and this comes from discussions with other bc patients and friends without bc:

- they don't think it's a common enough disease and may not know anyone with it. I know my diagnosis scared several friends to go in. Many times - as is human nature - we don't think something will happen to us as it seems so remote

- women (and men ) may feel a lump but are so busy and stressed about other things that they tend to let that doctor's appointment slip. As soon as I saw my breast contour change, I was in there like a shot. But I was very sensitized to breast changes, as I had very lumpy and dense breasts always

- we still think of cancer as an older person's disease. Stats and a walk through a chemo suite reinforce this belief because it's true to an extent. But cancer can happen any time. Our Ontario breast cancer screening program for women starts at 50. So I think many women don't start considering it till then. I met a woman in her mid fifties who told me she had never done a breast check. I was kind of stunned. Which leads to my last point

- education. I think that we don't want to be an alarmist society, but I think every senior high school student should have a health unit on cancer. And one on heart disease. And so on. If 40-50 percent of people will get diagnosed with cancer, we should and could benefit from one month of learning when we're young adults about this. people really know nothing about it until it hits close to home. I totally get that, bit a little proactivity can help

I, personally, would love to hear from the mockety mucks who conceived this idea and those who approved it as to their reasoning for this campaign and the trademarking of it. I don't see that happening though. No offense Mods, but you probably are writing off a script because so far we on this thread have not been totally convinced. I would like BCO to cite your statistics where fear is a barrier is a barrier from getting the best care possible.

Meow13, exercise coupled with BMI regarding breast cancer recurrence has a plethora evidenced based science research to back up the claim..for instance: https://www.sciencedaily.com/releases/2017/02/170221120804.htm There is no one or any cancer research claiming that exercise and low BMI means you can do away with scans and cancer will never return. A quote from link posted: ..lifestyle changes should never be used as a substitute for standard therapy.

Lilac - The last lines in the article you referred to :

"The authors caution that these recommendations are not a silver bullet for all women with breast cancer. Some breast cancers have aggressive biology and will recur despite the most meticulous lifestyle behaviours.

Patients should not be made to feel that inadequate lifestyle changes have led to recurrence of their cancer, they conclude."

Meow - You have hit the proverbial nail on the head.

"BAD HEALTH DOESN'T EQUATE TO CANCER"

"That is the problem to think if you are low risk that you won't get cancer"

There are plenty of members here who had ALWAYS done all the "right things" before their initial DX. There were oh so many members who continued to lead healthy lifestyles while undergoing treatment, yet died anyway.

Anyone can get cancer. There is no one solid reason why. Anyone with early stage BC can metastasise at anytime. There is no rhyme or reason to it. Cancer happens no matter what.

I was just providing information that might be helpful for the discussion. I wasn't making any comment about this campaign. Out.

Hey all,

Let's get along; we're all on the same page and want to support. I appreciate all the input here...we may not be talking about the campaign exactly all the time, but discussing fright in general is important.

I didn't read your comments negatively, Lilac. You were sharing info that is good stuff that we can all work toward (most of the time). It can't promise us a thing, but it can make a difference for a good many and exercise is something we can control.

But when you take a step back from all the various subthreads here...would any of us be here if fright didn't factor in at some point for us? Ya, no. I don't think so. Which reaffirms that fright will always be here till breast cancer ain't.

Re: Meow13's statement: "I get so angry when I see things like healthy lifestyle keeps cancer away. WARNING I will rip down any sign I see suggesting that. "

I took this as a reference to a campaign that the American Cancer Society ran a couple of years ago in the Pacific NW featuring signs around their premises stating "Cancer hates healthy bodies" (or something very similar). I found that extremely offensive and let them know it, too.

Yes, there are lots of other entities and columnists making similar claims but the ACS campaign was inexcusable.