Breast Cancer Action Site: I Now Am Finally Validated

I understand both sides of this discussion. People are going through different situations both medically and emotionally. I have to stay positive at work as I work with patients. It isn't their business or their problem what I'm going through. I chose to stay positive for myself and for those around me that care about me. Having said that I finally fell apart last week, about four months after they first found the lump. I have BACC which is very rare but has a good prognosis. I had a lumpectomy and revision. There was no follow-up treatment planned. That was until two weeks ago when the tumor board met again. One of the radiation oncologists did a deep dive into what little research there is for my cancer. He believes that radiation treatment would be of benefit. So I did some reading on my own. Radiation does increase the survival rate. Then I flipped out. I have a survival rate. I really do have cancer. I should probably have radiation. Talked to the nurse navigator and the radiation oncologist (by phone) which helped a little. Today I am feeling better. So there is room for all sorts of emotions. I choose optimism, most of the time. It helps me and my loved ones. But, obviously, everyone has a right to their own feelings.

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.

@babs28 It is deeply moving to see such a raw and honest exchange of experiences. As a healthcare provider, I believe it is vital to acknowledge that the emotional journey of a diagnosis is just as significant as the clinical one.

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.