Getting a diagnosis… again

It was almost 5pm on Thursday afternoon. I was sitting at work and picked up my cell phone without glancing at the number, expecting that it was my husband calling to alert me that he would be coming home on time in contrast to his usual late arrivals. When I didn’t hear anyone on the other end, I pulled my phone away to glance at the number – I didn’t recognize it. Still no voice. “Hello?” I repeated. “Hi, Hilary! It’s Dr. Dominici.” … my breast surgeon.

The call took me by surprise a little. After all, I wasn’t expecting the pathology results of my breast lumpectomy for at least another week or two given the ‘7-10 business day’ wait time that I was quoted… especially after the initial biopsies took longer than expected. Thus, I thought that Dr. Dominici was just checking in on how the surgical area was healing. I was prepared to tell her I was doing well and starting to feel well enough to tackle a run. Would she be OK with me heading out for a run?

“Hilary, we got the path results back already…” My heart dropped and I had the familiar feeling of fear quickly radiate throughout my chest. This is not a novel feeling for many cancer survivors – it happens every time your doctors want to send you in for scans, blood work, or biopsies ‘just to double check’. After 18 years of being a bone marrow transplant survivor, I have learned that it is almost always nothing; however, it felt like a small eternity passed before she continued. Maybe it was the tone of her voice, maybe it was because she didn’t wait the expected 7-10 business days, or maybe I just felt like something wasn’t quite right… “You have stage 0 breast cancer or what we call ductal carcinoma in situ.” She continued on and said that she, instead of the usual NP, would like to see me for my follow-up visit given the path results. “Do you have any questions?” she asked before saying that she looked forward to seeing me in a couple of days. I paused… Questions? Of course I had questions – What exactly is my prognosis? What is the treatment? Did you get all of it out? Am I still a cancer survivor… All of the questions would have to wait until the following week. 

The Follow-Up Visit
For most of my adult life, I have handled all of my cancer and pregnancy care solo, by choice. I took cabs to my weekly ultrasounds when I was pregnant with the twins and took a long lunch from work when I had my thyroid biopsies. Donny and I are working parents and it is a huge burden on our family system when we both take off for visits because I have A LOT of them! Don’t get me wrong – he tries to come, but I always insist that he should save his days until I actually need him – that is, when I actually have cancer. So, as we walked into my follow up appointment together, it was a stark reminder that this was more than just the usual false alarm.

Naturally, as a research coordinator in oncology, I wanted to know everything about what I had. I spent the time between when I first got the call until the moment we walked into the follow up appointment doing extensive research. In fact, I was still on my phone reading journal articles as we sat in the waiting room at the surgeon’s office. Then we saw Dr. Dominici…

The good news is 1) the surgical site was healing nicely 2) I could start lifting my kiddos and running again and 3) the diagnosis could be much worse (for example – invasive ductal carcinoma or IDC).

Now for the less awesome news… Ductal Carcinoma In Situ (aka DCIS) is a condition where atypical cells start growing faster than they should. As the name suggests, my crazy cells were found in the duct (where milk flows through) and they hadn’t started invading the neighboring tissue (in situ = on site or in position). The innumerable sources on DCIS that flood the internet explain that DCIS cannot kill you because by definition, it isn’t invading and metastasizing. However, DCIS can become invasive cancer and can eventually move into the bones, brain, liver, and lungs. Its name changes when it does this but it more or less is the same beast. Of note, as researchers learn more about DCIS, more people are debating whether DCIS should even be called a cancer. Thus, some organizations will include this in their breast cancer statistics while other organizations won’t include DCIS in the total.

    

My “Cancer” In a Nutshell
We learned that the lump that appeared on my MRI, the reason for the surgery in the first place, was not the DCIS, but was a fibroadenoma (completely benign). However, in pulling that out, the surgeons also stumbled upon the DCIS. Since the initial plan did not include pulling out DCIS, we didn’t have great margins on 3 of the axes. This means that DCIS could still be swimming around inside me. Also, since it didn’t appear on the mammogram, we don’t really know if there is more.

An obvious question, why didn’t we see the DCIS on my mammogram or MRI? DCIS is usually seen in 60-ish year old women via mammograms. It appears as clusters of little white dots known as calcifications.

Unfortunately for young women (or fortunately), the breast tissue is really dense when you’re young and it is especially hard to see calcifications through the dense tissue. As time goes on, the tissue becomes less dense and the calcifications can also be seen more easily. As you may have guessed, the fact that the DCIS cannot easily be seen in me via imaging, makes treatment of DCIS in young women especially hard (yes, they consider me a young woman still – woohoo!).

At the appointment, we also learned that my DCIS responds both to estrogen and progesterone (that’s a really good thing). It didn’t seem to be super aggressive either – the pathologist classified it as low to intermediate nuclear grade.

My breast surgeon was not sure what my team would recommend. Typically, women with DCIS would just have another surgery to cut the remainder out and probably get Tamoxifen (an oral med) for 5-10 years and/or radiation to that area. Historically, mastectomies were used to treat DCIS across the board but that culture is shifting. Studies demonstrate that a full resection of the DCIS with radiation is almost as effective as a mastectomy in many cases- as long as regular scans were used. Of course, I was confused by the idea of using scans since the scans did not really work for youngin’s like me. I think we left the surgeon’s office with more questions than we came in with. Cue the amazing team of doctors…

My Breast Team
Since I first learned of my diagnosis, I have been able to connect with multiple radiation oncologists from across the country – thank you to all friends and family who helped make those connections. I have spoken with pediatric oncologists about the DCIS in the context of survivorship. I have had friends put in calls to the top physicians at DFCI to ensure that my interesting case is given the appropriate attention. And just last week, I was fortunate enough to have my 6-month oncology visit.

Oncologist (post-transplant team)
I will admit, I was a bit nervous heading into the visit. I had to get a chest CT to follow up on the lung nodules that were found in December on an x-ray. Although I tried to remain mentally strong, it was hard to not worry for a split second that the lung nodules represented something more (lung cancer? metastasized breast cancer?). I will spare you the worry and let you know that the little guys haven’t changed a bit since December. Needless to say, that was a HUGE sigh of relief. More good news – my fabulous oncologist confirmed that everything else looked great.

Radiation Oncologist
The day after my medical oncology appointment, I had a very long visit with one of the radiation oncologists at Dana-Farber. We chatted for almost an hour about the potential to use radiation in my situation. I had already been hit with a good bit of radiation – 12 Gy, to be exact – which very likely could be the cause of the DCIS in the first place. Secondary cancers are a known side effect of total body irradiation, although it doesn’t make my current predicament any easier to stomach.

Unfortunately, the DCIS that we found was located just over my heart. As I’ve discussed here before, radiation sucks. So much so that they don’t use radiation on AML patients any more – pediatric or adults. One of the many side effects of radiation is damage to the heart and it gets worse with additional radiation. The physician thought she could angle the beams to avoid a direct hit to my heart; however, the direct ‘beams’ of radiation are somewhere in the area of 40 Gy which means that a certain amount of ‘scatter radiation’ to the heart was unavoidable. The radiation oncologist felt that any more than 1-2 Gy of scatter radiation would put me at serious risk of additional cardiac issues.

Thus, the idea of exposing my heart to even a little more radiation seemed less than exciting to her. However, she agreed that she could probably radiate me. Following this statement though, she said, “We can cut out the DCIS and use radiation this time but what about next time? You’re young and it will come back. Whatever pre-disposed you to getting DCIS at 30 is not going away… and next time it has a 50% chance of being invasive.”

The Rest of the Team
After circling back with the surgeon, we still have a lot of important folks that have to weigh-in before a treatment decision is made. This week I will be meeting with Ann Partridge – a physician who specializes in survivorship and young women with breast cancer. The following week I will be meeting with the plastic surgeon, who oddly enough has performed mastectomies on almost all of my friends – sadly, I don’t think there is a friends and family discount.

In Summary…
We don’t really know what this diagnosis means yet. As a cancer survivor who received a lot of treatment that now faces a diagnosis not typical for young women, our immediate future is a bit up in the air. We know that the treatment will likely have a huge impact on our family over the next bunch of months regardless of what treatment path we take; however, the hope is that we can invest a few months to ensure that I am able to attend kindergarten/high school/college graduations, make embarrassing speeches at weddings, and possibly meet grandbabies – even if the grandbabies assume the form of puppies or kittens.



Most importantly, thank you to all of my amazing friends and family for all of the love and support. I continue to feel like I should have used up my quota of love and support from all of you yet it continues coming. THANK YOU for making this so, so much easier! 
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