All is well

I had a follow-up ultrasound this morning.  While the tumor still exhibits some questionable characteristics, it has decreased in size, which indicates that it is not likely cancer.

They believe that it is a Lactacting Adenoma--a benign tumor affected by the hormones of pregnancy and lactation. The ductal tissue sampled in the last core biopsy are congruent with this diagnosis.

Whew.  Thank goodness.

Of course there is more follow-up in the near future, just to be sure, but for all intents and purposes the not knowing is over.

Hooray!

Whatever happened with that last biopsy?

I've been asked the question a lot lately.

After faithfully documenting my breast lump experience, I puttered out after I was told that I would need to repeat the core biopsy because the radiologist missed sampling the tumor and had instead sampled cores of healthy breast tissue.

My lack of enthusiasm developed during a conversation that I had requested with my physician in order to prepare for the second core biopsy, which was scheduled for later that week. Our discussion provided yet another twisty-turn that I couldn't decipher as either good or bad, but that certainly did make me feel very, very tired of the entire experience.

To bring you up to date:

When we finally connected over the phone, I pressed for more information about how and why the radiologist had managed not to sample my tumor at all, and also inquired whether the same one would be performing the re-do. Before we got too far, my doctor said that she had again spoken to the radiologist (who remains confident that she did in fact sample the tumor), and also requested that the pathologist re-review the samples to confirm that there was not a single a sign of a fibroadenoma. There was none.

Based on my doctors advice and her confidence in the radiologist's skill and judgement, I decided not to undergo a second core biopsy in favor of another ultrasound in early October. My doctor said that although the results are not what they expected to find, that does not mean that the results are wrong.

So, it could be great news, or maybe not.

I've noticed that the lump is much, much smaller, so I hope that is a good sign too. Next week, we'll find out what the lump has been up to over the last 6 weeks and then decide if another biopsy is really necessary.

worth repeating

On Monday I got a call from my doctor with good news that couldn't be elaborated on over the phone.

On Tuesday I went for a follow-up appointment and learned that the official diagnosis was a ruptured milk duct. After all that. However, I questioned why there was no mention in the report of fibroadenoma, as the first biopsy had indicated. My doctor thought it was a little strange as well, and left to discuss with the Pathologist his findings in more detail. He hadn't come in to work yet so my doctor said she'd investigate and give me a call back.

This morning I learned that the cores of tissue that the pathologist reviewed were in fact all ductal and breast tissue, which means that the tumor was missed entirely. The radiologist biopsied healthy breast tissue, and nothing else. I was told that sampling error is rare, but I'm a little suspicious as to how it is possible that the lump, which is not small, was not sampled at all.

All of this to say that I will need to have the procedure repeated.

I'm annoyed. I don't want to miss another week at the gym. I don't want to orchestrate another herculean feat of scheduling in order to be sure that Roscoe is cared for at home, and that I have a helper to accompany me with Merritt to my appointment. I don't really want to go through the procedure again and I definitely do not want to get a milk fistula--I felt lucky to have had the procedure once with no complications and I don't want to push it. Finally though, I don't want to be in limbo anymore. Not knowing affects me and it's hard not to think about it every day, especially when I spend every day with my boys.

Hopefully, I can schedule a repeat biopsy sooner rather than later.

Core Biopsy

Well timed, I read an article yesterday (You can still be a great mother, even if you can't breastfeed) that describes one woman's experience with breast cancer. The author shared a sentiment that helped me to make sense of my own feelings and find a place for my fixation to preserve my and Merritt's nursing relationship. She wrote: "When you're diagnosed with something really devastating, there's only so much you can hear. For me, it was that I couldn't breastfeed anymore. All I could think of was, 'what will I feed my baby?'"

Thank you to everyone who researched information for me, offered your contacts or your breast milk, and empathized with my torment over the last few months. If you want to catch up on the whole story you can read more sequentially here, here, here, and here.

All along I had hoped to know some thing that might illuminate what is the right thing to do in this situation. An impossibility, I found. In the end, there was no single piece of evidence that made the decision clear or easy. And I loosely debated right through dinner last night, as Andy and I devised a game plan for today.

Despite not finding the answer to whether or not I should proceed with a core biopsy, what I did find was my own confidence to persevere whatever side effects might come from the procedure. I've read accounts of women who nursed through milk fistula, for days, weeks, even longer, until they healed completely. I've read stories of moms who weaned as a result of a fistula, but who managed to nurse their baby effectively from just one breast. I've also read lots of happy endings where a core biopsy resulted in neither a milk fistula nor a cancer diagnosis.

When I spoke to my boss last week, who is both a physician and a public health expert, she encouraged me to trust my doctors--if the folks at the Betty Lou Ourisman Breast Center think that a biopsy is necessary, it is ok for me to put myself first and take care of what needs to be taken care of. She was confident that whatever might come after would be something that I could weather. I finally felt it too.

So, today when the ultrasound showed that the tumor continues to grow and that the cells inside are just as heterogeneous as they were a month ago, I consented to a core biopsy.

There were several things done to minimize the risk of a milk fistula, and to remain sensitive to my intentions to feed Merritt. I can share details in a later post for any of you who may be going through something similar and who might find it helpful.

Otherwise, the procedure was smooth sailing. Post op instructions dictate no heavy lifting for at least 48 hours--that includes the kids, I was told, but not much I can do about them!--and ice and compression for the first 24 hours. I nursed Merritt on the affected side five hours after the biopsy without issue. The wound is dressed with Tegaderm, so I really can't tell what's going on under there but, so far, there is no indication of any milk leaking or moisture. Fingers and toes crossed.

I have follow-up next Wednesday, which will hopefully mark the end and not a beginning.

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?

Good News.

My doctor called us at home late Wednesday night to tell me that the biopsy results were indicative of a fibroadenoma--a benign growth. I am relieved and feeling a lot but haven't yet had time to really process my thoughts.

While she mentioned that biopsies carry a 5% sampling error, she also said that the radiologist and pathologist were each confident that they biopsied an adequate amount of tissue from all areas of the tumor.

It is their practice to order a follow-up ultrasound, just to be on the safe side. Mine is scheduled for September. In the meantime I will take extra care to watch for any changes.

Thanks so much for your kind words and encouragement.

Knowing more: Friday's appointment

Friday morning finally came after what felt like a very, very, long week of waiting. My anxiety had ramped up over the later part of the week and, despite my better judgement, my mind had been wandering to some pretty dark and scary places.

Andy stayed home from work so that we could tackle the appointment and wrangle the boys together, and we drove uneventfully to the hospital in the city for what we thought would be a quick second opinion.

Roscoe was too full of curiosity, energy, and emotion to sit in one place for long so we split up shortly after we arrived. Roscoe and Andy left for the waiting room, while Merritt (hungry, as always) and I stayed to wait for the doctor. She arrived lovely and poised, her tone was warm and she spoke slowly and deliberately. I liked her right away. I felt relieved to be at Georgetown and confident that I was in the right place. She reviewed my family's cancer history (there's really not much to document), and other risk and protective factors. Then we moved on to discuss my lump.

She showed me an image from one of the ultrasound films, and pointed to a clearly delineated oval. She explained that the borders of the mass are smooth (a good sign), and that it grows in the plane of the breast tissue (also a good sign). She noted that one area of the mass has more shadows than the rest, and that the biopsy had probably been ordered based on that area alone. She did an exam one-handed, clutching Merritt in the crook of one arm since I needed both of mine to strike the familiar breast exam poses.

Then she asked if I wouldn't mind another ultrasound. Of course I didn't. We spent some time discussing the information that I had received about the potential risks involved with a biopsy during lactation. I learned more about milk fistula, and met with the other doctors to further discuss ways to minimize the risks while still moving forward with the procedure.

Three months of "watchful waiting" was identified as an alternate option, and when I shared that a catastrophic thinker like myself would have a hard time surviving that long, she mused that we wonder why the cost of health care is out of control, only exacerbated by unnecessary tests. "It's because people can't bear to live with the uncertainty." I shook my head, knowingly.

I asked if they would advise a biopsy given a different circumstance--say the same diagnosis but a woman not currently nursing her child. They said yes, they would, and right then I knew that it was what I wanted too. I wanted the same standard of care.

She left the room to order the ultrasound and to see if a biopsy could be performed later that afternoon.

What might have been one hour, turned into almost six as I was ushered into and out of the maze of hallways, doors, and patient rooms that make up the Breast Center. Andy and the kids had been given a consult room to camp out in so in between meetings I sought shelter there too, filling Andy in on the latest, nursing Merritt, and chatting with Roscoe who has had a lot to say lately.

In the end, the doctors decided it was best to take a conservative approach and instead of using the smallest gauge needles as necessary for a true core biopsy, they started with the largest gauge needle used for a fine needle aspiration and worked their way down until they had enough tissue to comprise an adequate sample. For me, that meant two different sized needles and five separate attempts.

I watched the whole thing on the ultrasound and felt some of it, too, since the doctor opted not to give me a full dose of lidocaine.

I nursed Merritt right before the procedure to empty as much milk as I could, and I nursed him on the affected side just a few hours later once back at home. The site has been a little tender but I can hardly complain.

I'm grateful for physicians who listen, and who care about families. Physicians who are unafraid and willing to find creative solutions in order to meet their patients where they are and who provide the best quality health care to ensure the highest quality of life.

The results will be in later this week.

Not now (not ever)

The other night as I put away our dinner's leftovers, Andy yelled down to me as he carried Roscoe from the tub into his room to get ready for bed, "If I ever die, I carry Roscoe in his towel like a sling, and call him a baby elephant or a baby whale."

I paused. "Um, okay?"

He responded, "Well, I just want you to know in case something ever happens to me. He really likes it."

Silence.

I thought for a minute, and then blurted out, "If I ever die, I want you to get remarried."

Long pause. "Hold on one second." Andy appeared at the foot of the stairs holding Roscoe in his arms. "What are you talking about? Why?"

"I wouldn't want the boys to grow up without a mother. I would want you to get remarried." He furrowed his brow, gave me a quick kiss, and said we'd talk later, then ascended the stairs and disappeared into the hallway leading to Roscoe's dimly lit room.

A few weeks ago I found a lump in my right breast. It was palpable and a little tender. The tenderness was familiar and I was worried because that meant it had been around for a while. Maybe even as early as those first days in the NICU with Merritt. On the upside, I thought it might be breastfeeding related.

I made an appointment for a few days later, and the nurse practitioner was confident that it was a plugged milk duct. So confident that I almost brushed off the suggested followup of an ultrasound, in part because of the inconvenience of Andy having to take off work since they don't allow kids at appointments.

But then I thought about my boys, and scheduled the ultrasound so that we could know for sure and move forward without any doubts.

Yesterday morning the four of us trooped to the Radiologist's and when my name was called I left Andy and the kids behind, anxious to confirm that this lump was nothing at all to be concerned about.

When she was finished, the tech said she'd be back in a second, the doctor needed to review the images. I remained on my back staring up at five large stickers of different colored cartoon cats and dogs stuck to the ceiling. With no clock in the room I gauged time by the number of pop songs that came through on the radio. About 5 1/2 of them. It had been too long, and I stuck my head out the door to see if I could flag anyone down.

My eyes locked with the patient waiting across from me. We exchanged sympathetic glances and I ducked back into my room to flip through magazines.

My mind wandered to Merritt who would undoubtedly need to nurse soon, and Roscoe who's lunchtime was also quickly approaching. I wished I had brought my cell phone to check in with Andy who was probably wondering what had happened to me.

Just then, a doctor entered the room with my tech following closely behind him. Uh oh.

He took a look for himself and then explained that the lump is structural and located outside of ducts. They can't rule out malignancy with ultrasound, so a biopsy was recommended. There are risks associated with biopsy in lactating women, the worst of which (in my opinion) is a post op requirement to refrain from nursing for 2 or 3 days afterward. Obviously, this would impact my supply. I had a lot of questions, and the doctor answered each of them, but I got the impression that he doesn't often deal with these issues in the context of breastfeeding. So I'm not taking his word as final. Another option is to wait six months and see if and how the mass progresses.

Given what might be at stake I don't feel comfortable with the wait and see approach.

Yesterday afternoon my records were faxed to Georgetown Hospital's breast surgeons who will review my films and provide a second opinion on how best to move forward.

Has anyone else had a core biopsy while nursing? Were you able to work around the post-op protocol to maintain your nursing relationship?