Sunday, September 6, 2015

Turning over a new leaf...

September is a time when New Englanders start pulling out the Oktoberfests and verifying that we have adequate supplies to deal with the anticipated onslaught of falling leaves. It is not usually a time when we talk about turning over new leaves. However, this September marks exactly that for me...

Exactly 1 year ago today, I underwent a bilateral mastectomy for low-stage breast cancer. About three years prior, I brought home my babies from their 3-month NICU stay at a mesely 5 pounds a piece (3 pounds heavier than at birth). Six years ago I gave birth to Goose despite the oncologists and fertility docs insisting I was infertile for over 13 years. And 20 years ago, before I even knew it, small amounts of AML (leukemia) started growing in my blood and bone marrow.

It is absolutely impossible to imagine my life without all of these events... at the very least, I wouldn't be able to contribute nearly as much to conversations about dinosaurs (yes, the brontosaurus is back! Thanks for the heads-up, Gus.). But in all seriousness, I also feel that this kind of luck and good fortune, places a certain impetus on me to pay it back.

Thus, while Goose heads off to Kindergarten, I head off to school to get a Health Sector MBA. As is par for the course, I'm sure we'll take a 'first day of school' photo because who doesn't want to have some good material to bribe your kid with later!?! But this got me thinking about one particular 'first day of school' photo... the one from seventh grade. I was super nerded-up with my ginormous glasses and floral dress complete with shoulder pads (another reason the 90's were fabulous). What I didn't realize when I started school that year, is that leukemia was rapidly growing inside me and would render me almost useless only four months later. Since September marks Childhood Cancer Awareness month and the beginning of school for many youngsters, I am hit with a reality that always strikes a chord... many of the families I know through my time in the cancer world have a last 'first day of school' photo. Given my experiences with AML once I was diagnosed and the horrible survival rates, I know all too well that, that ridiculous seventh grade photo could have been my last 'first day of school' photo.

So, while I set out to change the world and inevitably battle my way through accounting and finance, I am reminded of how lucky I am but also, that we must continue to fight cancer for all of those kiddos (and their families) who deserve so much more.

In Memory of Matty

Monday, April 13, 2015

When Life Gives You Lemons... Find Some Tequila

To be honest, I'm more of a craft beer girl myself but I think we can all relate to this. Studies continue to demonstrate that thinking about negative events and putting a positive spin on them is better for overall mental health... and let's not forget, sometimes if you act on that you may be able to change the future. As you know, cancer and I have a bit of a history, so I feel pretty strongly about finding ways to positively spin my cancer experiences and create change whenever possible.

In the midst of my scuffle with breast cancer this year, I took my GMATs and applied to business schools. It was tricky to coordinate campus visits and interviews around surgery and recovery, especially when I wasn't supposed to be moving my arms ("How in the world to I shake that person's hand with my T-Rex arms!?!). However, I am so excited to share that I was accepted to a couple of schools and I will be calling myself a Boston University Terrier come August (although, obviously, I will remain a Nittany Lion in the event of a hockey game between the two)!

As most of you know, I have dedicated the last 5 years to clinical research at Dana-Farber Cancer Institute. I started out on the adult Blood and Marrow Transplant Team and spent the past 3.5 years as a member of the Pediatric Oncology family. It goes without saying, I am sad to leave but excited to embark on this new chapter.

Fighting Cancer Better
In 1900 William James said, "The great use of life is to spend it for something that outlasts it." As a parent, I expect that raising my kiddos will fulfill this in some fashion and hopefully in a good way...  although as of yesterday Augustus still wants to be a dinosaur when he grows up.

When he dressed as an executive dinosaur in 2012 for dress-up day...
Since I spent 13 of the past 19 years believing that offspring were not in my future thanks to the side effects of chemo, my goal from a young age was to contribute to future generations by fighting cancer. I've worked in clinical oncology research and I have driven my friends and family crazy with fundraisers. However, I still feel as though I can and must contribute more. Since the world is run by business (yes, especially the health sector), I have decided to pursue an MBA at the Questrom School of Business at Boston University. I plan to have a concentration in health sector management and entrepreneurship in hopes of find better ways to fight cancer for both patients and survivors.

Since an important component of an MBA is the quality of your classmates, I was excited to have the opportunity to meet and bond a little with a group of them this weekend. Hands-down, they are total rock stars and I can't wait to stress out over finance with them (or at least grab drinks with them after finance is over).

Hanging out at Fenway with other BU MBA people. Not a bad view...

Thursday, April 9, 2015

Throwback Thursday: 19 years and counting...

It's Thursday, April 9th, so naturally, my Facebook and Instagram are filled with incriminating and adorable #TBT photos of friends and family. For the past 4 years, I have spent this day sharing the same photo of me and requesting your help to fund groundbreaking research as I hit the fundaising homestretch before the Boston Marathon. April 9th in the past has been a day of unquestionable celebration as it marked the anniversary of my life-saving bone marrow transplant, which helped destroy the AML (acute leukemia) I battled 19 years ago. Every April 9th marked another cancer-free year. But this year is different...

Cancer after Cancer
This year has proven to be more challenging than the prior 19 years (yes, even if you include the hours upon hours of marathon training!). Each year, I have a battery of tests around the anniversary of my transplant. Sometimes these tests would produce scary results but even after thyroid, skin, and breast biopsies, I could always breathe a huge sigh of relief and go on enjoying my life POST cancer. It wasn't until my series of tests in 2014 that I had to revisit HAVING cancer. Cancer wasn't in the past anymore. I was no longer cancer-free. I was not a survivor - I was a fighter.

It wasn't that my prognosis was particularly scary, in fact, it was great. After having a bilateral mastectomy, my physicians told me that "breast cancer certainly isn't your biggest concern." It was the reality of the situation or rather, what the breast cancer represented, that made this diagnosis hard to swallow. It represented the permanent damage that chemo and radiation had on my body.... still... 19 years later.

Collateral Damage
Most people assume that I'm not running the marathon this year because of the breast cancer but this is not true. I absolutely would have dragged myself across the finish line (with my new tatas) if that was the only hurdle. Unfortunately, the chemo and radiation left more collateral damage.

In the past, my oncologists seemed to think that if I could run the marathon, even with my sub-par heart and lungs, then I should go for it. However, over the past two years, there has been a change of heart (pardon the pun). I was one of the earliest pediatric transplant patients for AML so you could say I'm a bit of a trailblazer (or guinea pig but I prefer trailblazer). Inevitably, this means that we understand only some of what goes on in my body.

We've learned that my insanely high heart rate while exercising (approximately 190 bpm for hours) is due to the radiation (a mini bio lesson to come soon!). This information coupled with new case studies and data don't seem to support my marathon running. Thus, this year most of my physicians asked me to stop marathon running... permanently. This was not easy news to stomach, especially when you live in Boston where people get excited about lobster running shoes! (OK, they are pretty cool.)

The good news, is that I am supposed to run daily-just not too far. This means that once I hit the pavement again on May 1st (when my plastic surgeon gives me the all-clear), I will be running with even more motivation and yes, heart.

So, here's to another year of overcoming obstacles, finding the joy in the journey, and happy runs! ...and of course, to destroying cancer!

Thursday, August 21, 2014

Getting Things Off My Chest...

Yes... I love to bring humor into otherwise stinky situations. It's not that breast cancer or leukemia or bone marrow transplants are awesome or funny - they suck; however, once the cards are dealt, you just have to roll with it, dance a little, and laugh a lot! So yes, you should expect lots of good mastectomy puns coming your way in the coming weeks and months!

With that being said, I do want to get something off my chest (not literally... yet).
 A mastectomy is not a free boob job.

It was one of the first things I said when I realized that double mastectomy could be in my future, "Hey! At least I get the boobs I always wanted!" That's because there was a time, not so long ago, when I thought that a mastectomy was a surgery when the surgeon cut you open, 'pulled out your boobs', gave you some implants, and you could go about living your life as it was - maybe just more endowed.  HOWEVER, as Donny and I scoured websites for information, watched Youtube videos, discussed the procedures with friends, and chatted with my physicians, we learned that nothing could be further from the truth.
Now as I mentioned in the previous post, there are different types of mastectomies and it is important to keep this point in mind. What I'm about to dive into, is specifically tailored around a bilateral, total mastectomy - the type I will undergo in only 18 days. However, all mastectomies suck. Period.

Once my physicians scheduled my surgery, I began describing what my mastectomy entailed to colleagues and friends - that is when I realized that I wasn't the only one who was a bit in the dark. Thus, I am providing a mastectomy crash course.

*WARNING: The below info, pictures, and videos are not for sissies. Proceed with caution.*

In a nutshell, here's what my mastectomy will look like (if all goes according to plan): 

  • A total bilateral mastectomy with reconstruction is about a 5 hour procedure.
  • The breast surgical team will start off the surgery. When they're done, the plastics team takes over.
  • The Breast Team
    • My breast surgeon is going to make a marquise type cut above and below the nipple. That skin and all breast and fatty tissue will be removed. My breast surgeon will also scrape the inside of the remaining skin to try to ensure that as much cancer-causing cells are removed.This means the remaining 'flap' of skin is going to be very, very thin.

    • It is important to note that my breast surgeon pays careful attention to the tissue as she is removing it, since she likely would be able to spot an invasive cancer. The plan is to leave all of my lymph nodes in place; however, this could change if an invasive cancer is spotted during surgery. This is because invasive cancers typically spread to the lymph nodes before moving around the body. Removing the lymph nodes not only serves to potentially remove cancers but also allows the physicians to determine if additional treatment is necessary (i.e. chemo, etc).
    • To summarize everything I just said, watch from about 1:40 to 3:00...

  • The Plastics Team
    • Once the breast team is done, the plastics team takes over. 
    • In about 1 in 20 cases, the plastics team is unable to begin the reconstruction process (i.e. if the skin appears to be losing blood flow, etc). If this were to happen, they would just close me up and I would come back for another surgery in about two weeks.
    • Some good news! My plastic surgeon was particularly impressed with my skin, despite my prior radiation, and estimates that there is about a 1 in 40 chance that we won't be able to start the reconstruction process.
    • If all goes well, my plastic surgeon will initiate the reconstruction process and place my drains. The drains are rubbery tubes that allow the lymph and serous fluid to leave my body easily and collect in little bulbs. I will have these in for anywhere from 4 days to 3 weeks. Fortunately, my plastic surgeon is not anticipating that they will be in long since I am on the smaller side. Woohoo! 
    • What does the reconstruction process entail? 
      • In my case, I will be getting tissue expanders. Basically, a fair amount of skin gets cut out so unlike breast augmentation (aka a boob job) where implants are inserted, the plastic surgeon has to stretch the skin over time before putting the implants in. 
      • Tissue expanders are like really thick but empty water balloons. At first, there will barely be enough room in my chest for the expanders. After about 4 to 6 weeks, whenever the skin starts to relax a bit, my plastic surgeon will start filling the expanders with saline. 
      • We won't know for a while if I will have to see him once a week or once a month to get saline injections. Filling the expanders involves a quick outpatient visit to the plastic surgeon in which he will stick a needle in the little ports underneath my skin and inject saline. 


      • Once we get to a point where I'm happy (likely months from the initial surgery), we schedule another surgery. I'm told this surgery is 'easy'. My plastic surgeon will just cut along the scar and switch out my expanders for implants. 
      • In regards to picking the type of implant, this is not a decision that needs to be made now. Regardless of the type of implant chosen though, all implants need to be replaced every so often. Thus, I will continue to undergo breast surgery for the foreseeable future. Since we're not worried about the type of implant at this point, I will revisit this down the road.
So many implants...
      • Also, since this is not a nipple sparing mastectomy, I will also visit the world of nipple reconstruction at a later point.  
  • Pathology will receive everything that is pulled out, likely while my plastics team is still hard at work. Over the following 2 weeks, they will analyze the sample and provide my oncology team with a final diagnosis. Hopefully, they will not find any new DCIS and/or cancer.

Inpatient Stay
  • Once the surgery is complete, I will likely be in the recovery room for 1-3 hours. After that, I will make my way to my hospital room. At this point, the physicians are anticipating that I will spend 1-2 nights inpatient. 
  • During the inpatient stay, I will do a lot of resting, receive some narcotics, and learn how to empty my drains - a job that will likely be delegated to Donny since my range of motion will be non-existent.

Recovery with Drains
  • As mentioned above, the drains will stay in for anywhere from 4 days to 3 weeks. During that time, my primary job is to move my lungs but not my arms.
  • The incisions themselves are not extraordinarily painful, I am told. However, for petite people, the skin stretching coupled with drain tubes and expanders can cause an enormous amount of 'pressure.' My physicians have assured me that I will feel "pressure, not pain" which could sound promising. HOWEVER, I was a leukemia patient that learned that 'pressure' from bone marrow aspirations (when the MDs pulled bone marrow out of my hip), was very painful - maybe a different type of pain but pain none the less.Thus, I'm a little skeptical.
  • While the drains are in, Donny and I will need to empty them 2-3 times each day. Fortunately, my plastic surgeon removes them as soon as the drainage dips below 30 ml/daily from each drain.
  • Immediately after surgery, my chest is going to look pretty gross. After removing a lot of skin and scraping the remaining skin until it is very thin, my chest will kind of look like a topo map due to the drains and unfilled expanders.
  • Since it is kind of hard to understand this without a visual and because this girl is awesome, I recommend watching the below video, if you would like a better idea.

Recovery post Drains
  • Since there will not be a lot of room in my chest, removal of the drains is expected to provide a huge relief. However, I won't be back to my normal self once the drains come out. Full on healing and recovery won't start for a while longer. 
  • I have had to promise my plastic surgeon that I will do nothing for a couple of weeks and you don't mess with this guy.
My fabulous plastic surgeon.
  •  I am not permitted to lift my arms other than to feed myself until he gives me the all clear. Thus, cooking, washing my hair, high-fiving, and even walking are off the list for a while. As you may have guessed, picking up the kiddos and driving is absolutely forbidden for a while longer. 
  • Eventually, I will start up physical therapy to regain my range of motion but for a while, I just have to let everything heal correctly. 
  • To give you an idea of how lousy my range of motion will end up. Here are some of the 'exercises' I will be doing post mastectomy...

Beyond the physical
  • It would be ridiculous to describe a mastectomy and only address the physical component because there is a HUGE psychological component. Any time an individual's body changes drastically, his/her perception of self is bound to be altered in some way - whether good or bad or maybe it goes back and forth between the two. Therefore, in the coming months, I will undoubtedly be sharing my thoughts on the psychological effects of this process. 

Monday, August 11, 2014

Fighting Cancer Like a Boss

... with meditation and bunny food.

Bunny Food
It didn't take long for my amazing work colleagues to notice my super leafy lunches that I started bringing in a couple of weeks ago. Within the first week, a friend commented that my Tupperware of greens looked remarkably similar to the veggies her husband was putting outside for the family of rabbits that lived in their yard. Thus, the contents of my lunches quickly adopted the nickname of bunny food. 
cilantro, yams, almonds, beets, shoots...

Why bunny food?
It's tough to even scrape the tip of this iceberg in a short blog post and I definitely don't want to push too much 'bunny food' propaganda; however, I can summarize my reasons for adopting this modified diet in 3 bullets.

1) Your body runs on the stuff you put in it, not dissimilar from a car. The better the fuel, the better the performance.

2) Certain foods and/or types of foods are linked with cancers. There are boat loads of studies that demonstrate that some foods can promote the growth of certain types of cancers. Cutting out these foods was a no-brainer- Why would I feed the cancer? AND... My Dana-Farber docs fully supports boosting cancer treatment with a good diet.

3) I love yummy foods and no, I'm not talking about kale (sorry, kale). I'm talking about comfort foods that are chock full of butter. Do I think they taste exponentially more delicious than broccoli sprouts and flax seed? Absolutely! Do I think they taste sooo delicious that I would be willing to give up seeing my kids graduate college - absolutely not. ...And that is exactly what goes through my head when I smell or see the delicious food. Yes, this is extreme, but for me, as I sit here typing today knowing that there is likely some ductal carcinoma hanging out in me, it hardly seems like a tough decision. I'm going to starve the cancer!

Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at:
Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at:
Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at:
Observation studies have linked diets high in red meat with an increased risk of developing cancers (colorectal, lung, breast, uterine, ovary, prostate) and cancer recurrence. - See more at:

A benefit to eating healthy - fresh, local bread from Iggy's

Learning to Be Mindful...

Cancer or no cancer - most people I know lead pretty crazy lives. Whether it is my personal to-do list, a project at work, or getting all of the kids fed in time, I can be stressed out from time to time. I just call myself 'type A' and continue to ignore any stress - after all, I am being super productive! Little did I know that meditation could help relieve the stress and make me more productive. I know it sounds like 'crazy hippie stuff' (as a few of my friends have said) but there is some science behind it... really.

Dana-Farber is a HUGE proponent of learning to be mindful - regardless of your cancer status. The NIH National Center for Complementary and Alternative Medicine reports that regular meditation can reduce chronic pain, anxiety, high blood pressure, substance abuse, cholesterol, post-traumatic stress disorder, and blood 'stress' cortisol levels. Meditation may also improve mood, immune function, and fertility.

It all sounded great but let's be real, WHO HAS TIME FOR MEDITATION!?! I was getting stressed just thinking about how to find time to meditate - I can't even shower without one of my kids visiting. Cue my new favorite app - Headspace. I'm not going to launch into a full infomercial about the app but I will say that it requires only 10 minutes. Bonus! The first 10 meditation sessions are free so you can give it a try (OK, that bordered on infomercial).

The way I see it, even if it is 'crazy hippie stuff', you may like it.

Here's a quick TED talk that the owner and founder of Headspace, Andy Puddicombe, gave...

T minus 28 days until the big day!!!

Monday, August 4, 2014

The Breast Cancer Journey Continues

Over the past couple of weeks, Donny and I met with the rest of my breast cancer fighting team including the breast cancer medical oncologist and the plastic surgeon.

As with any serious medical diagnosis (i.e. Crohn's, Diabetes, etc), there is a lot of information to process when you first get the news; my diagnosis was no exception. At this point, Donny and I were having almost nightly conversations about the treatment options. We would discuss how we planned on managing the kiddos for each of the treatment options and how we saw our lives playing out in 5, 10, and 15 years. I found myself fighting off tears as I wondered if I would actually be around in 15 years...

Breast Medical Oncologist

Donny and I had a pretty good feeling that radiation was off the table after my consult with the radiation oncologist but we didn't really know what to expect from Ann Partridge (the breast medical oncologist who doubled as the director of the adult survivorship program). We didn't know what specific treatment option she would recommend but we felt prepared to accept whatever she suggested... the truth is, we weren't prepared for her suggestion - "you have to do what you're comfortable with," she said. Although I felt like I had no control when the twins were in the NICU, I enjoyed that our docs felt confident in their decisions and merely told us what was happening.

Now, I was in the driver's seat... "This is a life-altering decision. Why am I making the call???"

BUT, there were two reasons.
1) Adult medicine in the oncology world tends to focus more on what the patient feels most comfortable doing.
2) There wasn't a clear-cut answer. My situation was rather unprecedented. There is research out there for young women with breast cancer, young women without breast cancer but with stinky genes (BRCA1, BRCA2, etc), and young women post treatment for Hodgkin Disease - but none of these women describe me. Don't get me wrong, young women that have had a bone marrow transplant and TBI do get DCIS/Breast Cancer, BUT there are not many of us running around. (AML has about a 50% survival rate and the low number of women like me is further complicated by the fact that a while ago, the oncologists stopped using TBI for both children and adults with AML due to the plethora of side effects. Thus, we don't have large pools of data to drive our decision.) So Ann presented us with the options and let us chose...

The Options

1) Watch and Wait - The watching and waiting option is something that is a great option for some people. Unfortunately, watching didn't see feasible since the DCIS did not appear on my mammogram or MRI so we were nervous that this approach would be more along the lines of wait and then crisis. 

2) Full Lumpectomy with Radiation - This option was really not on the table prior to meeting with Ann but we discussed anyway. If I were a 'normal', older, non-cancer survivor this would have been the preferred option. The recurrence rates of DCIS/Breast Cancer are very close for individuals that choose this option and a full mastectomy; thus, it is pretty darn popular. HOWEVER, this option was already axed since the radiation department didn't really want to give me radiation. Additionally, all of the physicians felt that I was at a high risk for another round of DCIS/breast cancer within 5-8 years so it seemed like a more extreme approach was probably warranted.

Radiation for Breast Cancer

3) Single Total/Simple Mastectomy- The lumpectomy with radiation option works because it pulls out any cancer cells and then zaps any remaining trouble cells, essentially ensuring that you killed all of the bad stuff. A simple mastectomy can accomplish the same thing - but it is a little more extreme. The surgeon removes all breast tissue (bad and good) from the skin and muscle. Unlike Angelina Jolie's nipple sparing/nipple delayed mastectomy, the nipple and areola are removed with a total/simple mastectomy. Nipple sparing would not be an option in my case since I have a ductal cancer and the nipple is the mother of all ducts.

4) Bilateral Total/Simple Mastectomy - A bilateral total/simple mastectomy just means that the mastectomy is performed on both sides. Given my history of TBI and the fact that I have DCIS at 31 means that I am at a high risk of having another bout of breast cancer/DCIS soon. Thus, Ann felt that it was more than reasonable to take this approach. 

After much discussion, Donny and I both felt like a bilateral total mastectomy would likely be the best option but wanted to chat with the plastic surgeon.

Plastic Surgeon
Our visit with my plastic surgeon was incredibly informative and in many ways, reassuring. We went through the process of the surgery, recovery, and reconstruction (more details to follow in a future blog post). After chatting for over an hour, I had to give my plastic surgeon a decision. At this point, it seemed pretty clear. "I'm going to opt for the bilateral mastectomy" it felt weird saying it. This was a big damn deal but, in that moment, my decision seemed less monumental than when I bought my first car. So, my plastic surgeon started the process of scheduling the surgery with my breast surgeon. Since getting my breast surgeon and plastic surgeon in the an operating room for the same 5 hours is surprisingly difficult, the surgery could not be scheduled until the second week of September. Fortunately, that gives me a lot of time to prep at work, at home, and most importantly, mentally.

It goes without saying that this is just the beginning of this chapter of my life with cancer but I cannot thank everyone enough for all of the support that has already been sent our way! We are so blessed to have such amazing friends and family. You all rock!!!

Monday, July 14, 2014

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!