Breast Cancer Action Site: I Now Am Finally Validated

Thank you, thank you, for posting this. That bcaction.org is just what I've needed also for validation.
Oh... toxic positivity and gaslighting... I'll be returning to that site.

So much helpful information..,thank you..I just subscribed after reading numerous articles. Validating…for sure!!!

Sadly, even doctors interpret "no evidence of disease" as "Your A-OK" when really it means that if cancer is present, it can't be detected with current technology. I'd call that "toxic positivity".

@peggydobbs what would you have them do instead, if the cancer is truly undetectable?

I understand the frustration & the cynicism. Breast cancer & its treatments are a complex subject. But I find this article depressing. And I don't really need to feel depressed right now. I guess we all choose the lens through which we view the world around us. I love my cancer center & my team. They saved my life. I prefer to focus on that.

I am sure your cancer team is doing everything they can with the current tests and treatments, at your hospital. They, ofcourse, should be acknowledged for their care. I do know that non-contrast chest and abdomen MRIs could have an impact on the survival rate of some breast cancer women. I might be one of them. So that is a possible tool for the detection of breast cancer in the first place and to look for a recurrence. I feel that we could have more advanced tests and treatments right now, if our country's priorities were different. I am asking for us to please express ourselves during October Breast Cancer Awareness Month, 2026.

I think, like other cancers, we're waiting for the cure. The truth is that treatments are extending survival and many are less toxic than those used even 20 years ago. I was diagnosed de Novo with lobular carcinoma at stage 4. Bone mets only, so I had DMX and radiation therapy. I'm on my first line letrozole and Kisqali for 3 years. But I know others with stage 4 that have been on numerous treatments. The truth is that at this stage, we await new treatments targeting different mutations each year. And there are new treatments approved each year. It buys time. It also helps us understand that everyone's breast cancer is different, even if under the umbrella of lobular carcinoma. So no evidence of active disease is as good as it gets in stage 4. Lobular is hard to pick up on scans, but ctDNA is proving to be an alternate way to measure disease progression. Everyone diagnosed with cancer wonders, why me? I'm sure environmental factors play a role in increased incidence. But with everything we come in contact with deregulated, we can't expect improvements there. The UK won't import our chlorinated chickens. If you want to be angry, be angry with a system that values profit over lives. Do you know why UK doesn't want their people exposed to our carcinogens? Because with socialized medicine there is an incentive to keep people healthy since it costs money to treat illness. Here, illness is big business.

This is so good! Thank you so much for posting this. I have felt exactly the same way, and I'm thrilled to see this acknowledged on a public platform. Corporations absolutely exploit breast cancer "awareness" to make money. People who have no experience with breast cancer expect you to "fight" and "be positive" through some of the worst physical and emotional difficulties of your life. I find it disgusting that people believe if you just "fight" hard enough, you can "beat" breast cancer. To me, the implication is that those who don't survive just "gave in" or didn't try hard enough. I am not brave, I am not a warrior--I had no choice! I was diagnosed and I went through treatment. Heaven forbid if we dare "complain" about the horrible aching after a chemo treatment and Neulasta injection, if we are emotionally affected by losing our hair, if we're too exhausted to make dinner (you just sat in a chair all day getting your infusion, it's not like you ran a marathon). I will never forget this--I was talking to a friend after church, and she asked how I was feeling. I replied simply and truthfully, "tired." And a man who was with us told me, "Oh, but you have to stay positive!" My dear friend snapped back at him in my defense, and told him I'm the most positive person she knows; but that's not the point! I was tired, and positivity has nothing to do with that. Another good one: I had surgery, chemo, then 33 radiation treatments (which left me exhausted and my skin like blackened chicken). Shortly after, on a long walk with my now-ex-husband, I fell behind. He was irritated that I was slowing down, and I explained I still experienced pretty wicked fatigue from my treatment. He said, "Oh, from the cancer you don't even have anymore?" as if my fatigue should have disappeared the day I finished treatment. And then there's the unseen effects! My surgical scars have faded, my hair has grown back, my burnt skin has healed, but now I get Zoladex shots to suppress my ovaries and take an AI, so I have no estrogen left. And that causes fatigue, and brain fog, and makes it hard to lose weight, and I feel like I'm 110 years old when I'm 50. I've known a few women who were diagnosed after I'd been through all this, and I have told each of them that they are allowed to be upset, they are allowed to admit to their pain. They do not have to plaster on a fake smile, at least not with me. I think it's essential we have space to be authentic. No, it won't do any good to perpetually wallow in self-pity, but I have never once encountered a woman who did that!
Anyway, oops, I didn't mean to turn that into my own therapy session! I really just came to say I loved the article!

I was 37 when Charlotte Haley introduced the first peach-colored ribbon in 1991 for breast cancer awareness. It seemed a good way to show support for fellow women dealing with breast cancer.
As everything becomes monetized and used for promotional purposes, it was later adopted and changed to the iconic pink by Estée Lauder and Self magazine in 1992. And now, before I use info from a BC support site, I spend time reading who benefits from this “support” site as some are money making sites or headed by lawyers looking to increase clients.
Our medical system has been based on detecting and treating disease, and with the insurance company funding prevention has had no place. I’m pretty sure if you are a cash only patient, and the doctor is not longer limited by the insurance contract patients sign, we would receive more preventative care. With enormously expensive medical equipment (scans, precision radiation, robotic supports) doctors tend to get locked into large medical systems that are aligned with care driven by insurance reimbursements.

Maybe the near future will have insurance companies recognizing the monetary benefit of preventative care. But what also comes with that is following minimizing options, as some socialized medicine systems do.
Would I have been told to wait and see if I was diagnosed today with the DCIS found in 2022? Probably. Would I be happy with hormone therapy only and stress laden 6 month scans for years? No, actually. I’m glad I had surgery. Surgery which may no longer be a funded option in the near future.

@colely I hear you. Obviously, with our current administration, there is no hope of any significant advancements in medical research of any kind (they are slashing cancer research budgets) but hopefully that will change when we have a new slate of people in government. And this is unrelated, but breast cancer overall is often considered the "darling" of the media, due to its extensive ad campaigns. For example, more women die from heart disease than from all of the cancers combined, but there's not a lot of awareness of heart disease in women. No pink ribbons, no anything. We have a long way to go in terms of women's health issues.