Can we talk about breast cancer overdiagnosis?

Well, now that Yubon has her results, I'll reply.

I actually tried to reply right away, but internet issues got in the way of posting. I tried to reply a few days later and something else happened and I did not. I figured it was fate. I also read a layer of fear and anger in the OP and, having BTDT and gotten a few T-shorts along the way, I knew it didn't matter all that much what I said. I figured if she was angry at a needing a biopsy, just want until there's a cancer diagnosis. Talk about angry! Remember the 5 stages of death and dying.. it's the same for a cancer diagnosis.. there are several stages until you reach acceptance.

Overdiagnosis? Sure. We over diagnosis and treat DCIS, ductal carcinoma in situ. Some argue that it is not even truly a cancer as it is not invasive. A certain percentage of those will become invasive cancer. The problem is that there still is not a great way to figure out who those people are. Chemo is ineffective as it is a local issue. So it's removal plus radiation... or a mastectomy and no radiation. Sometimes, DCIS is so wide spread that mastectomy is more effective than lumpectomy. Do I know anyone that died from DCIS? Technically, no. However, I very much remember a young woman named Amy who had a DCIS diagnosis. Less than a year later, she had a diagnosis of stage 4 disease. She had such a beautiful wedding. She's no longer here to tell her story. We need a way to distinguish the Amy's of the world from the rest so only the Amy's get the full works. Others may just need removal. Some may just need watching.

BTW, lumpectomy is the removal of a malignant lump. If the results are benign, it was an excisional biopsy.

As far as overscreening goes... Let's think about this. If you are looking for a needle in a haystack and you want to find that needle before it has begun sewing (ie spreading), how often should you look for that needle? Once a year? Every other year? Every three years? At least we've stopped routine mammos on the true elderly who are much more likely to have very slow growing cancers, the type where they are likely to die from natural causes before the cancer causes an issue. But for the rest of us, how often should we look? My sister had a clear mammo after my diagnosis. She skipped the next year. So, 2 years later she went back. She had invasive breast cancer that had already spread to the lymph nodes. Tell me again, how often should we be looking? And how old should we be? 35? 40? 50?

My cancer was found on a routine screening mammogram. I started screening irregularly at 29 due to family history. When my mother died at 62 without having had breast cancer, it was clear that she did not inherit her family's tendency. If she did not inherit it, I could not have inherited it. Despite old wives tales, genes do not 'skip' generations. I went to screening on a normal schedule and skipped a few years because I was still under 40. When I finally went, it would be the last one. I saw that original screening mammogram and was blown away that anyone picked it up. It was not picked up on the screening mammo per se. There was an itty bitty odd looking spot. No calcifications. Just something borderline questionable. It wasn't until I had the additional views where the area was magnified that it was crystal clear. I saw it myself. I did not need a biopsy to confirm that. It was too deep in my breast to palpate. And, according to my surgeon, it felt like normal breast tissue. It was rapidly multiplying, with a larger percentage than normal of cells in a state of active growth. It was also poorly differentiated, which means it did not bear a decent resemblance to breast cells any more. It was not the best I could have hoped for biologically in some ways, it other ways it was. Nevertheless, had I waited until I was age 50, which is this year, I would have had a different outcome. How can I know this? I can't. No one can. But I do understand tumor biology well enough to know that I was quite fortunate that my husband was getting laid off which led me to run around and see all my docs and get all my routine screening done. I understand the biology well enough to understand that it was only a matter of time until the cells took hold elsewhere. It was a sucky time. You want to talk angry... every freaking doctor I saw for a routine exam resulting in something alarming. The ovarian cyst we had been watching for years had suddenly grown. My blood work wasn't great. My BP was increasing... and that was before I had all these other results. Once I got the mammo results, that trumped everything else. Without that mammogram, which I had put off a year, I wouldn't be writing this today.

As far as the pink.. it's overwhelming. I disliked it before I was diagnosed as I felt it drew attention from other cancers. I still feel that way. It can also be oh-so-very in your face when you do have breast cancer. The morning of that repeat mammogram, I went shopping. I practically walked into a display of pink ribbon socks. It felt like a slap in the face. I think I knew it then. I bought the socks in memory of my aunt. Those socks became a symbol. My then 9 yr old daughter saw them and said, "Mommy, that test you are having, it's for cancer isn't it?" Kids are freaking sharp. Anyway, every where I went, I felt like I was bombarded with pink. When I was finally well enough to drive after my bilateral mastectomy, I went to the gym for PT. I was sooo happy to feel like a normal person again, sort of, and then I was slapped with "you are a cancer patient" all over again. Same for seeing all that damn pink in the supermarket. I used to joke that I should get the pink things for free. I had already given enough.

And those FB games, they suck the most. If you want to support your survivor friends and family, quit playing them. They are offensive. We are aware. If you know anyone who has had breast cancer, you are aware. The games do nothing to help awareness. The only thing that needs more awareness is metastatic disease. No one dies from cancer in the breast. That's not what kills us. It's when the cancer goes elsewhere. Once that happens, there is no cure. That's why there has been such an emphasis in the last 30-40 yrs on early diagnosis. If you catch it early, before it has become metastatic, you are likely to save a life. That's why treatment is so intense for even many early stage cancers. If you wait until the horse is out of the barn, you'll never win. Metastatic breast cancer is not curable. That's what we need to be aware of. That's the basis for all of this over screening and over diagnosis. And that's also where the research dollars need to be.

I could go on and on.. but this is more than enough. I'm happy Yubon has not joined the club. I hope no one else ever does.