In January of this year, I was diagnosed with Ductal Carcinoma in Situ (DCIS) – Stage 0 Breast Cancer. DCIS isn’t really cancer – it’s the presence of a collection of pre-cancerous cells. Are they likely to become cancer? This is something researchers haven’t quite figured out. They know there’s a chance, and doctors recommend particularly if you have a BRCA mutation, that you have minimally a lumpectomy if not a complete mastectomy to ensure that the cells don’t continue to grow and become invasive.
When my doctor called to give me the diagnosis, I began to cry. She asked if I was ok, and I said, “I can’t believe I actually have breast cancer.” And she said, “well, you really don’t – you have pre-cancerous cells.” Hmmm. This didn’t make me feel much better. It also didn’t help that by the next day, my online health record included “Breast Cancer” along with the list of my other health issues. So what’s the deal – did I have cancer or not?
Recently, Dr. Susan Love (whose blog I love – no pun intended), wrote about this question:
Some of these cancers [like DCIS] may remain precancers throughout a person’s lifetime. Others may grow so rapidly that they have already spread to other parts of the body before they are found. The problem is that we currently treat all cancers the same. This leads to overtreatment of some and undertreatment of others.
Dr. Love would like to see these types of cells tracked in a registry:
Creating observational registries that would follow women with DCIS and LCIS over time so that we could determine which precancers do progress and, if so, over what time frame. We could also identify the local environments that egg precancers on to become a cancer that could result in death and that which will not–which would keep many women from worrying and being overtreated. Or, even better, we could figure out what causes precancerous and cancerous to arise in the first place so we can prevent them all together!
This is important because right now, when a woman is diagnosed with DCIS, she has no idea what the chances are of the pre-cancer becoming cancer. She only has two choices – surgery, or wait around and risk the development of invasive cancer.
So why am I writing about this? I suppose I’m sort of bothered by that we even ask the question – is DCIS really cancer? In this recent NPR story, Dr Laura Esserman says:
I don’t think we should label [DCIS] as cancer. I think we should call it a ‘ductal lesion.’ I think people would be much more willing to be calm about it […] I think we all need to take a step back and not be so hysterical.
And that is why I’m bothered. The implication here is not that there is a scientific reason why DCIS should not be considered cancer. Rather, the implication is that there’s a psychological reason – and that those of us who’ve had mastectomies for fear of DCIS becoming invasive are actually just over-reacting. I wish Dr Esserman had at least considered that those of us with BRCA mutations are in a different situation – I don’t think any doctor would consider a BRCA+ patient to be “hysterical” if she wanted a mastectomy after a DCIS diagnosis. Especially with a BRCA mutation – you just don’t know. Those pre-cancerous cells found one day could be invasive the next. So although Dr Esserman says DCIS is not an emergency, I’m glad that my doctors felt I should have immediate surgery to eradicate any chance of that pre-cancer becoming cancerous.
To me, the nomenclature isn’t really what’s important here – call it pre-cancer, call it a lesion, call it cancer, whatever. The fact of the matter is that no one wants to know that there’s something abnormal going on in their body. It’s scary and creepy, and when given the choice, I don’t think it’s over-reacting or “hysterical” to want to get rid of it, not just treat it and hope that treatment works. Especially if you’re BRCA+ – you’ve been waiting for the moment when someone tells you that you have breast cancer – whether it’s stage 0 or stage 4. The reaction is the same – crying, anger, fear, panic – so it doesn’t really matter if you call it pre-cancer or cancer.
One thing to consider is this: Who gets to say they have/had breast cancer? When you say something like that to people, you get a certain type of attention – whether it’s sympathy, pity, empathy, etc – you get something from that, and some people need/want that attention. I am not one of those people – when I told my family and friends of my diagnosis, I specifically said, “do not get me any pink ribbons” – while I use my experience to advocate for genetic testing, I don’t want any sympathy because I had DCIS – I don’t need to announce it with a magnet on my car or with a rubber bracelet. But I think for some people, it’s important to get support when they’re going through something like this regardless of the stage of disease. Pre-cancer or cancer – people deserve that support, especially from others who have had breast cancer. Calling DCIS a lesion could take away an entire support network from someone who really needs it.
I admit, if it comes up in some way, often it’s easier to say “I had breast cancer,” rather than, “I had pre-cancerous cells that were likely to become invasive because of my genetic status as BRCA positive” – although now sometimes I can just say, “I have that Angeline Jolie thing.” I guess for me though, being BRCA+, there is no doubt in my mind that Stage 0 would have become invasive had I only treated it with hormones or had a lumpectomy.
I came about an inch away from cancer, and when you get that close, does it really matter what you call it?