In The News: March 2020

Below is a list of breast cancer-related articles that I’ve compiled for March 2020.

• Article from the Fred Hutch organization discussing that MRIs are the best tool for screening dense breasts for breast cancer, but the cost of the MRI prevents them from being used as a primary screening tool. Thus, mammograms continue to be used as a primary screening tool, even though they aren’t the most effective for women with dense breasts.
• Article from Oncology Nursing News discussing a technique used by researchers at Stamford Hospital to identify women at higher risk for breast cancer, inform these women, and get them to sign up for and complete increased screening in an attempt to identify sooner incidences of breast cancer.
• There are a few articles this month on how and when genetic testing related to breast cancer risk should take place.
  • This article from Mayo Clinic advocates that all women under the age of 66 that have been diagnosed with breast cancer receive a recommendation to take genetic counseling, even if there is no prior family history of breast cancer.
  • Article/possible editorial (?) from the Jerusalem Times discussing what different countries’ recommendations are regarding BRCA testing among the Ashkenazi Jew population and does this guidance make sense?
• Apparently some TV show (that I’ve never heard of, but that doesn’t mean anything) will feature a story line this week where a character will make a decision from their BRCA testing results. Intriguing.
• University of Massachusetts cancer researchers are conducting a study looking at breast milk from women who have already been identified as having a BRCA1 or BRCA2 genetic mutation.
• Article on Dana-Farber Cancer Institute’s effort to match breast cancer patients with particular genetic mutations to pilot studies designed for those mutations.
• An article on how being a mother impacts the decisions made by women who have been tested positive for a BRCA genetic mutation.
• An article written by a women who finds herself at 39% risk of breast cancer and her thoughts on genetic testing.
• Article from ASCO providing guidelines for the management of male breast cancer.

Bilateral Ultrasound and Results

Earlier this week, I had my bilateral ultrasound. I’ll go ahead and give the spoiler alert- everything came back as benign!

I got my ultrasound at the same radiology center that I got my mammogram and my MRI, so the initial routine was pretty similar. Go into the center, sign in, wait for awhile, sign a few forms, wait for a while, and then go back to the locker area. I changed into the gown and locked my things up (although, in the days of COVID-19, I’m thinking this joint locker system is a bit of a shortfall, especially in a situation where people can have compromised immune systems). I then got called back into the room.

Many women are already familiar with ultrasounds due to the pregnancy thing; this was a pretty similar situation. I laid down on a table, where they then put gel on my chest and used the magic ultrasound wand to locate the nodes previously identified through both my mammogram and MRI. In order to enable this, I was asked to either lay flat on my back or slightly on my hip leaning to either side. This got a little uncomfortable, as I was in this position for maybe a full five minutes, but nothing huge. As I was getting an ultrasound on both breasts, they first focused on one breast and then moved to the other.

Before starting the ultrasound, the technician surprised me by saying that the doctor would review the results immediately after the exam and I would have an answer before I left that day. That is super awesome! So, true to her word, after the ultrasound was complete, she left to go talk to the doctor. She came back maybe ten minutes later, informing me that everything was benign, which was good! Similar to the results from the MRI, it looks like all the nodes are fluid-filled cysts, which are nothing to worry about. They don’t cause any increase to my cancer risk and don’t normally require any follow-up care at all (unless they are painful, in which case they can be drained).

With that, I headed home!

Up next on my journey, I still need to switch birth controls, which is happening next week. As a reminder, I’m switching birth controls because my current medication maybe but maybe won’t cause the Tamoxifen to be less effective. There’s not really any reason to risk this, so I’m just switching to a different medication that has no concerns in this area.

I still have to get tested for my BRCA genetic mutation. I’m a bit frustrated in this area; I’ve had this appointment rescheduled twice upon requests from the office, with my current appointment being in mid-April. I don’t have to get my BRCA results back before starting the med, so that shouldn’t really be a problem, but it’s frustrating nonetheless.

Last, on Monday I’ll work to schedule an appointment with my new breast cancer specialist. We’re getting closer!

Because Insurance

Since getting my MRI, I’ve gotten two letters from my insurance company and/or a contractor they use. Because MRI’s aren’t a normal initial screening tool for breast cancer, and because I’m only 36 (with the non-high risk cancer population’s age for breast cancer screening beginning to 40), the fact that my doctor used my personal individual risk factors to order me a screening MRI is seen as abnormal and needs additional justification.

This is just one of the reasons I am pro-insurance improvements in the US. My doctor obviously made an educated decision based on the risk factors that are unique to me.

Obviously I hope that my breast cancer center will be able to make the case that the MRI was justified (although due to their recent poor communication, this is… questionable). Otherwise, I’ll be paying for my MRI out of pocket. While I’m in a situation that I can afford this type of out-of-pocket medical expense, there are plenty of women who can’t, and that’s a serious medical injustice. One of the best ways to save money on medical expenses is to take preventative action against conditions that result in lengthy and expensive treatments, and pushing back against MRI’s for those who it would truly benefit from them is, in my personal opinion, a stupid stance.

Detailed MRI Results

Biggest lesson for me in the past week: You really need to be your own advocate for your health.

After my MRI, I got feedback on my MRI from three different sources.

The first source was my breast cancer center. They called and said that my results were benign and they would see me at my next appointment later in the year. While this is good news, it lacks any detail whatsoever.

The second source was the letter I received from the radiology center. Here is what my letter told me:

“We are pleased to inform you that the results of your breast imaging exam shows no sign of cancer.

Although mammography is the most accurate method for early detection, not every cancer is seen on mammography. Current American College of Radiology guidelines recommend annual mammography for all women age 40 and older. Screening with mammography should continue as long as you are in good health and are willing to undergo additional testing, including biopsy, if an abnormality is detected. If you may be at high risk for breast cancer, you should speak to your doctor to decide if additional screening tests might be right for you.”

Okay, great. While this tells me I don’t have cancer, it also doesn’t do very little to to explain anything more about what is happening in my body.

My third source of information is me logging into my radiology center patient portal and reading the MRI test report.

First, let’s review my test report information from my 2020 mammogram. As a reminder, I first had a mammogram in 2016, so they’re using this 2016 mammogram as a baseline for my 2020 mammogram results. I’m adding bold font to their verbiage to highlight the parts that I care about.

“Breast Composition:The breasts are heterogeneously dense, which may obscure small masses.

Findings: There are new nodular densities in both breasts in the central region and in the upper outer quadrant region.

IMPRESSION:  New nodular densities in both breasts require additional evaluation.
Additional imaging (bilateral ultrasound) is recommended.”

Okay, so between 2016 to 2020, my breasts grew new nodular densities. That’s good to know. Using that information, let’s now go to my MRI test report. Again, I’m going to bold the things that I care about.

“BACKGROUND BREAST APPEARANCE:  There is heterogeneous fibroglandular tissue with moderate background parenchymal enhancement. This lowers the specificity of breast MRI.

Right breast: Precontrast images of the right breast demonstrate multiple scattered T2 hyperintense cysts. These are concentrated in the superior aspect of the breast. The largest cyst is at 10 o’clock centrally posterior depth and measures 2.2 cm. Note that this cyst appears to account for the mammographic abnormality in the right breast on screening mammography. Following administration of contrast there is moderate background parenchymal enhancement with multiple scattered foci. Within the right breast 9 o’clock immediately adjacent to the nipple there is a small oval enhancing area which appears to be within the skin measuring 5 mm. Recommend correlation with physical examination. This is best seen on image 299.

Left breast: Precontrast images of the left breast demonstrate scattered T2 hyperintense cysts. The largest cyst is within the lateral aspect of the breast in the 2 o’clock radian and measures 15 mm. There is no skin thickening or nipple retraction. Following administration of contrast there are multiple benign scattered foci of enhancement. There is no suspicious enhancing mass or nonmass enhancement noted.

Extramammary findings: There is no axillary adenopathy.

IMPRESSION:  The oval masses seen within the breast bilaterally on mammography represent simple cysts on MRI.

RECOMMENDATION:  Clinical management.”

Would it have been just the worst use of time ever for a medical professional to to say- “Jen, it looks like since 2016, you’ve gotten a few cysts in your breasts. According to the MRI, they appear benign. However, you still need to get your ultrasound so we can get a better look at them. Depending on the results of the ultrasound, we may decide to biopsy them. If they are filled with fluid, it’s totes benign, and we’ll likely do nothing about them, unless they cause you pain or discomfort, in which case we can drain the fluid. If they’re not filled with fluid, we’ll biopsy them to get some further information. There’s likely nothing to worry about, but we just want to make sure.”

Sigh.

If you would like more information on breast cysts, you can get it here.

Lack of Communication

I have had a series of frustrating communication failures with my breast cancer center and it has led to a decision on my part to change breast cancer centers. Let me explain.

A few weeks ago, after I had my mammogram, I logged onto the radiology center patient portal, where I found out that my mammogram results were inconclusive and the radiology center was recommending that I get a bilateral ultrasound to get more clarification on the situation. I called my breast cancer specialist to see if they indeed wanted me to get a bilateral ultrasound. After someone answered the phone, I introduced myself and mentioned the name of my doctor. At the mention of my doctor’s name, the person very casually says, “Oh, she doesn’t work here anymore.” Um…. what? We then get into the details of my mammogram results, and at the end of the call, I ask for clarification on my doctor’s status at the center, to which I am told that my doctor’s last day at the practice was to be that day. I then asked if they would be sending out any additional information regarding my doctor’s departure, and was told yes, they would be.

It has been two weeks since this very casual, unprofessional dialogue took place. I’ve received no email from the practice; I’ve received no calls from the practice on this topic. I just pulled up their website and my specialist’s information is still listed on their site as a practicing doctor. I did talk to my doctor later that same day and she provided me a bit more information, but the center itself has conducted no patient outreach to let me know what is going on. Further, the center is small and my doctor was the only high-risk breast cancer specialist at the center, so I don’t know who would become my doctor if I were to stay at the center as a patient, as the other two doctors typically deal with women after their diagnosis, as opposed to working with prevention patients.

After this disappointing lack of information, I had already planned on switching to a new breast cancer center, as I didn’t find this acceptable.

But that’s not the end of the story.

Last week, I had a breast MRI. After the MRI, I received a voicemail from someone at the center saying something to the effect of, “Your MRI results came back as benign! We will follow up with you at your next visit. I believe you are due to come back in later at the end of this year.”

This voicemail confused me. I was excited that my MRI results were benign, but I had just talked to the office a week prior about whether or not I should be getting an ultrasound after my inconclusive mammogram results, at which point I was told I should get a follow-up ultrasound. Since the MRI results came back as benign and the person that left the message didn’t mention anything about still needing to get an ultrasound, did I not need the ultrasound? Was the person just not tuned into the fact I was told to get a follow-up ultrasound and telling me all was well prematurely? The voicemail left me with a lot of questions.

So I called the office again and asked for clarification if I still needed to get my bilateral ultrasound. After being put on hold, I was put on the phone with someone who demanded to know why I was asking if I could skip getting a test that they recommended that I get. Um… that’s a huge mis-characterization of the situation. I explained what was going on and this person gave me more information about what mammograms see vs what MRIs see vs what ultrasounds see. Turns out, just because my MRI results were benign didn’t mean that the ultrasound results would come back benign. I could still get the ultrasound and the results could still be inconclusive, possibly leading to a breast biopsy for additional clarification.

All of this came as a bit of a shock to me after the super cheerful “You’re good, see you at the end of the year!” voicemail I had received.

Long story short, I am for sure switching to a new breast cancer center. I am really lucky; since I live in a metropolitan area, I have quite a few breast cancer centers within a convenient distance. I’ve already chatted on the phone with someone from the center I plan on switching to; they recommended I wait until my ultrasound (and possible biopsy) are completed before scheduling an appointment. That being said, I’m really disappointed and severely irritated at the service I’ve been getting from my current center. I have been a patient there for six years and never had any problems, but in the past month, it’s just been miscommunication after miscommunication. I find this ridiculous as a person who is only going for preventative purposes; I can’t imagine dealing with this type of communication as a diagnosed breast cancer patient.

Mammogram, The Second Time Around

Today I had my second 3D mammogram. Last night, when asked by a friend, I described the experience as weird. If you haven’t had one yet, let me fill you in.

Luckily I was able to schedule my mammogram to take place on a Saturday. Although I have more than adequate sick leave where I work, I prefer to meet with doctors outside of my work day when possible.

I do like the center where I get my testing done. Upon walking in, I signed in and then took a seat. Within a few minutes, I was called up to one of the many patient stations to fill out a few forms. I then took a seat again for a few more minutes. I always feel slightly out of place during these moments. Because my appointments are all of a preventative nature, I’m typically the youngest person in the waiting room.

When they called my name, I followed the nurse back to a room that was a combination changing room/locker room. I got my own little room where I got undressed on the top, while remaining dressed on the bottom. There is a locker with a key where I kept my clothes during the appointment. I put on a hip-length gown that is open in the front, clutched it tightly closed, and then headed out into a second waiting room. This waiting room was much smaller and, in my experience, has only been filled with women waiting for their mammograms.

Upon being called again, I headed into the room to get my mammogram. My nurse asked me some standard medical questions. For mammograms, you shouldn’t have any lotion or anything on your breasts; I had accidentally put deodorant on my underarms that morning, so the nurse gave me some wipes to clean off the deodorant. We then took two images of each of my breasts. The posing for a 3D mammogram is a bit weird. There’s some extension of arms that make me feel a bit like I’m posing for a weird photo shoot, ha. It did hurt a little this time, but only for a few seconds for each image. I also had to hold my breath for maybe 10-15 seconds while each image was being taken.

After the images were taken, I headed back to my locker room, got dressed again, and put my gown in the bin for used gowns. I will now be waiting for about four business days for my image results to come back. Once I get the results back, I’ll be able to schedule my MRI which, unfortunately, I’ll have to schedule during business hours.

Fast Forward To Today

A few weeks ago, I returned to my oncologist for a check-up. I had not been to see her for about a year and a half. Prior to this break, I had gone in for my first mammogram in order to establish a baseline after I had completed breastfeeding my daughter. Although my husband and I are now firmly in the camp that we will only have one child, at the time there was some chance we might have a second child and there are some changes that can take place in the breast as a result of breastfeeding. Because of this, my doctor thought we should go ahead and do a baseline if I was prepared to do so.

My first appointment after this break was in January 2020. During this appointment, my oncologist re-ran my IBIS risk evaluation, v8 stats. You can find out more information about this evaluation tool here. According to my test results, my person risk of breast cancer after five year is 3.1%, while the general population has a risk of .3%. My lifetime risk is 41.2%, while the general population has a risk of 13.2%. Because my personal risk level is of a certain level higher than the general population, I continue to be a candidate for preventative measures, to include taking Tamoxifin.

While I previously was not interested in taking Tamoxifin, seeing the new stats and being in a different phase of my life has changed my view. While I previously was told I would need to take the drug for ten years, more recent research has led to the timeline for preventative use being only five years.

However, there are a number of steps I’ll be taking before starting to any medication. First, after discussions with my oncologist, I will be getting both a mammogram and an MRI. In addition, I have decided to meet with a gyno to switch the IUD that I have in. After my daughter’s birth, I decided to adopt Mirena as my birth control mechanism. However, earlier it was believed that taking Mirena while on Tamoxifen would reduce the effectiveness of Tamoxifen. Although some of the more recent studies show that it might not be quite as big of a concern as it originally was, I would prefer to switch to an IUD that has none of those concerns, which may be a bit irrational but sometimes that’s how these decisions are made. In addition, I also need to stop taking Benedryl as a sleep aid, as you can’t take Benedryl and Tamoxifen at the same time. I started taking Benedryl as a sleep aid when I was pregnant (although not while breast-feeding), since melatonin isn’t an option while pregnant. I’ve stuck with Benedryl because it’s a regulated medicine (melatonin isn’t, unless you get it through prescription, which I don’t) and I also just sleep better on it. It’ll probably take me a bit of time to find a replacement for the Benedryl.

Lastly, I am going to meet with the genetic counselor again and finally get tested for the BRCA genetic mutation. I have two reasons for doing this. First, I have a daughter and I want her to have all the information possible to make her own decisions. Second, according to my doctor, as the medical research gets further along, the findings from the BRCA genetic mutation testing begin to provide you with more detailed health information. I don’t have more specifics on that, but I’m guessing I’ll find out more when I prepare to get the testing done.

I am a bit worried about some of the side effects of Tamoxifin, which include things like hot flashes, nausea and possible weight gain. However, many of the stories I hear about the side effects are coming from women who are taking Tamoxifin after being treated for breast cancer, so I’m not entirely sure how women taking it for entirely preventative purpose fare. Thus… my blog! Fingers crossed!