Revisiting the scary place

After the good news from my doctor last month, I was able to more or less put out of my mind anything related to cancer. Within a few weeks though, I noticed that the lump was bigger--that I could feel it just by running my finger over the top of my skin, and that I could actually see it most of the time. I gave the breast center another call last week and they asked me to come in as soon as possible.

Another ultrasound confirmed that the lump has grown--at a rate that exceeds even the most aggressive cancers (so I think this bit of information was filed under the "we think this is benign" category). More importantly, and alarming, the cells inside the mass have completely changed. A month ago they were uniform and unassuming, this week they are jagged and lined up in odd patterns.

My doctors do not know what they are looking at. They have little experience with these issues in lactating women, they said so themselves. The only way to know for sure is to do a core biopsy.

I have resisted the core biopsy procedure in an effort to avoid the very real risk of a milk fistula. I've been told that the risk is relatively low, but because my tumor is located centrally in an area where all the ducts come together the odds are increased.

If it does occur the ultimate solution is to wean from nursing, which would be devastating.

I'm disappointed and becoming increasingly angry that more information isn't available to nursing mothers when it comes to making decisions like these. Even websites like the American Cancer Society and Susan G Komen, do not address cancer or diagnostic options in the context of lactation.

Hopeful that some unpublished information might be available, I spoke to an oncology nurse at the American Cancer Society. I was dismayed that she wasn’t able to answer any of my questions or provide any concrete guidance. It’s difficult to make educated decisions without data. I expressed frustration that there isn’t more to base my decision on, and she responded in agreement that “most women don’t like to breastfeed”, speaking to the fact that low prevalence of breastfeeding renders research on the topic of cancer and nursing a low priority.

Her comment was irritating because prevalence of breastfeeding isn’t low because women “don’t like” to breastfeed. On the whole, our society doesn't value breastfeeding. That right there is the problem.

Yes, there are overarching recommendations from the Centers for Disease Control, the World Health Organization, and the Academy of Pediatrics whose guidelines differ in some respects but ultimately agree that breastfeeding should be exclusive for the first 6 months and continue through the first year, and beyond for as long as the mom and baby desire.

The problem is that there is little societal support for women and their babies to establish and foster a nursing relationship. Modern birthing practices, standard protocol in NICUs and nurseries, stingy maternity benefits, and additional challenges for women once they return to work all add up. Not to mention the emphasis our culture places on early independence for babies, and the pressure that many new moms feel as they are bombarded with messages big and small that minimize breastfeeding and encourage the weaning process.

It's no coincidence that while 75% of new moms initiate breastfeeding at birth, only 13% of moms are still breastfeeding exclusively at 6 months, as recommended. Initially, it was suggested that I return to consider my options for addressing the tumor once Merritt is weaned (I think they figured it be at most a couple of months), but when I said that it wouldn't likely be for another 14 or so, they had to change their game plan. I have doctors who are truly well intentioned and who want to support me in the ways that I need to be supported as I move through this process, but I'm beginning to feel as if my effort to preserve this aspect of my relationship with my son (especially for his nutrition) is considered to be rhetorical in the face of something that is potentially cancer. I get it, and at the same time I think it's crazy.

Anyway, I felt overwhelmed by the fact that we were revisiting the biopsy topic, and for several reasons I decided to wait another month in order to do more research and to further weigh the potential benefits against the potential risks.

Does anyone have any stories of core biopsy (with or without milk fistula) while nursing?