The peculiar trauma of DCIS

This is a long one.

Last week I asked Mr A why he had decided to focus on breast disease and become an oncoplastic surgeon:

"I think the reason was because if you look at all the spectrum of cancers, this is the cancer with challenges at every step. You talk to the person who is affected, which is very difficult. Breaking the news. Because, to me, breast cancer is the only cancer which has both psychological and physical aspects of trauma. Massive trauma. For example, someone who has colo-rectal surgery for cancer, they’ve got trauma from a physical cause – cancer – you remove part of the bowel, close it, there’s no psychological trauma [once it has healed]. Breast...that's what makes you a woman. So there are different aspects of trauma involved. It's a very difficult disease to explain to the patient and to help her cope with it."

This got me thinking. "Breast cancer" itself is such a wide spectrum of disease. With DCIS - "ductal carcinoma in situ" - the word "cancer" comes up when the news you might have it is broken to you, and that's all you hear. You have a biopsy. You have to wait for confirmation of how aggressive and extensive your disease is. The waiting is vile. Then DCIS is diagnosed. You are told you don't have breast cancer, but you are given literature on breast cancer to take away. Then you find that DCIS is sidelined within that. That's somewhat understandable, because medically speaking DCIS is not life-threatening and it is, as yet, non-invasive; it is sitting in the milk ducts, and it's not going anywhere. DCIS itself does not have the ability to spread. But it's not always understandable from a patient perspective. You can't quite let yourself believe you are going to be okay - that would be too easy. If you let yourself believe you're ok, you're tempting fate, and if your DCIS is high grade, it may have turned invasive already. The invasion could be confined to the breast, but it could have gone further. You wait a bit longer to find out. You're losing a breast; maybe both, or you're having lumpectomies with radiation and maybe hormone therapy too. Throw in the removal of some lymph nodes for good measure. You're having treatment for cancer, for god's sake!

This is the peculiar trauma of DCIS. Even after diagnosis, we are still asking ourselves: do we have cancer or don't we? We are told the prognosis is excellent, and still the disease leads to many women feeling catastrophic fear, despite the best efforts of the medical team around us to allay those fears. We hear voices like Martina Navratilova's describing DCIS as their "personal 9/11". I don't blame her; I felt it too, such is the power of the word "cancer". But let's be clear: when DCIS treatment is over, we are not breast cancer survivors. DCIS is not an invasive cancer. It has the potential to become one. It is a local disease (i.e. it is solely in the breast), not a systemic one (i.e. hasn't spread anywhere else in the body.) We have not had to "fight" cancer, because we have, hopefully, prevented it at an early stage of development. Our lives were not, as yet, under threat.

And here is another peculiar aspect of DCIS: the guilt. I know for my part, I have experienced guilt because I "only" had DCIS, but I still received all the care and support that cancer patients with more advanced disease get. I felt guilt that I was offered (and accepted) a lot of support and sympathy from family, friends and beyond, despite the fact that I tried to stress the fact it was "early breast cancer."  Above all, I felt guilt that my disease was contained, that I did not have to undergo chemotherapy like many women I knew. Different people described DCIS to me as a "brush" with cancer, "on-the-fence" cancer, or the "good kind of cancer". We should feel good about that, after all, this is fortunate in comparison to finding you have invasive disease, but a lot of DCIS women feel that these descriptions minimise their diagnosis. Why?

We struggle with understanding where we fit in. Luck doesn't feel like the right word to describe a case of DCIS, especially when it's high grade and extensive and you have to lose a breast. Neither is it about 'survivorship' or 'battle', words that are most commonly associated with cancer. In my case, finding my disease was pure chance; being 38, I am not in the NHS breast screening programme, which is how DCIS is usually found among women aged 50 and over; 20% of all new breast cancer patients identified through screening have DCIS whether low, intermediate, or high grade. I went to the doctor because I had a 'feeling' that something was wrong with my breast. It ached; that's all. I didn't even have a lump, but the doctor thought she found one. What if she hadn't? I could have ignored it, like so many women do. It was a peculiar thing to suddenly find myself looking at an x-ray of my breast completely covered in tiny, custard-powder dots - "micro-calcifications" - that turned out to be cancer cells. The lump the doctor thought she had found turned out to be nothing. Those calcifications could so easily have been left unchecked. Within six weeks I had had a mastectomy. It blew my mind when I was told in two years, I would likely have had invasive cancer and would have been given every toxic systemic treatment going.

Because I have spent these last few months trying to come to terms with what's happened by educating myself, I think now, with the right information and approach, that the fear that comes with DCIS could be much better controlled. This could mean being more specific with the nomenclature of invasive versus non-invasive cancer and giving women with DCIS the ability to understand better how it works, and why surgery may be the best thing for them. There's a reason why people say knowledge is power. It gives a feeling of control over something that, in actuality, is beyond our control. There must be better ways to help women cope with the loss of something that has defined us as women and mothers for all of our lives, and to help us come to terms with the question: why did I have to lose a breast if I didn't have breast cancer? We need a new language for what I can only describe as a no man's land - the frightening, unknown territory adjacent to the battlefield.