It’s clear, no, wait, it’s not
As the years passed, follow-up appointments with my radiologist, oncologist, and breast surgeon became less and less frequent. In the first year they were every 3 months, then every 6 months. By the end of the fifth year, I was down to only annual check-ups. In August of 2007 I went in for my annual mammogram, which went smoothly. The radiology tech said the images were fine, no repeats, no zoomed in images on the left breast (which sometimes happened if they had trouble seeing the tissue around the scarring from past surgeries and radiation). What a relief! Then, two weeks later, just one day after my 5-year cancer-free anniversary, I got a call from my gynecologist’s office, who prescribed the mammogram. Her nurse called to say the radiologist had trouble reading the mammogram images, that there was some kind of densification – dense areas in the breast tissue that make it difficult to see what is going on – in both breasts, and they wanted me to go in for an MRI. An MRI uses a different technology – magnetic resonance imaging – than a mammogram does and can sometimes see tumors not detectable by mammogram.
This news gave me a sinking feeling in my stomach, which soon became a little hard pit of dread. I called MG at work with the news. She responded as she usually does to iffy news about my health. We will get the test and see what they say, and until we know more, we will hope for the best. I was convinced that this was the beginning of the same process all over again, and that the cancer was back. She felt I was being fatalistic, and that this was just another false alarm. It was probably just a problem with the scar tissue in the left breast, and probably just my breast tissue getting denser in the right breast. Densification happens as we get older. I knew she was probably right, and I wanted to believe her, but my dread would not go away.
I had been planning to go to the office on campus and do some work on my doctoral dissertation, so I went ahead with that plan, but I was preoccupied and filled with dread. When I got into the office, I told a friend, “I just know this means the cancer is back.” She hardly knew what to say. What would you say if someone told you that? I had not known her during the first cancer, I had not known most of the people that I knew now through graduate school, so my cancer history was a story they had heard, but not something they had experienced with me. And because it was DCIS, I think they thought, like MG and I wanted to think, that it would not come back.
I had never had a breast MRI before, and it was a strange experience. I had had MRIs in the past, once on my right hip for a lipoma, which is a benign fatty tumor. But breast MRIs are very different from other MRIs. Like other MRIs, before I went into the imaging room a nurse put in an IV, for the contrast, which makes it easier to see any abnormalities in soft tissue. Once I was in the imaging room, I could see that the setup was very different from the typical MRI, which usually involves laying on your back and going headfirst into the machine.
For starters, I was going to have to spend the whole breast MRI lying face down, and I would be going into the machine feet first. To make sure my breasts were not compressed in any way, I had to lay on a foam platform, which had three openings, one for each breast, and one for my face. The technician had me lay face down on the platform, with my hospital gown open in the front, so the fabric would not interfere with the images. Then I stretched my hands over my head, so they wouldn’t get in the way of the images. My IV was connected to an automatic injector, which stood outside of the MRI machine, and which contained the contrast solution. They offered me the choice to wear earplugs or headphones, or both – I chose headphones, but quickly learned that they did not protect my ears enough from the noise of the machine – and then asked what kind of music I preferred.
Before they slid me feet first into the MRI machine, they gave me a small remote with a “hot button” to press if there are any problems during the procedure, like if I feel claustrophobic or have a panic attack. If you press the button, they talk to you through the headphones, and if you need them to stop, they stop. I only used the button once, at the beginning of the test, when I realized that I needed the earplugs to protect my hearing. I did not use the hot button again because I just wanted to get it over with. Instead, whenever I felt panicky about the noise, or about why I needed to have this test, or about what I was afraid the results would be, I just tried to talk myself out of it. It helped that I had MG’s voice in my head, reminding me that there was no reason to panic because as far as we knew so far, there was nothing wrong with me. The first part of the MRI is done without contrast, and then the auto-injector pushes the contrast into your IV for the second half of the procedure. The MRI itself takes about half an hour, but the whole visit is more like an hour or longer.
On September 7, 2007 I wrote the following email to my siblings:
Subject: Clean bill of health at year 5
Hey everyone,
I wanted you to know that I had my annual mammogram two weeks ago, followed by an MRI, and I have been given a clean bill of health in terms of breast cancer. The MRI was a follow-up to the mammogram, because I had not had one before and because the increasing density around my scar tissue was making the mammogram difficult to read - basically, we are just defining a "new normal". …
I have an ultrasound on Monday to validate the MRI findings - to verify that the only spots seen, which are located one near the lymph nodes on each side, are exactly that - lymph nodes. I expect this to be true, since we are talking about both sides looking the same, which is unheard of when there is cancer.
So, I have made it to my fifth cancer-free anniversary, and I wanted you all to know.
I was confident that what I was telling people was true, as I had not gotten any calls after the ultrasound. (Back then, doctors usually called with test results, and definitely if they were bad.) In early October, on a Friday, my surgeon called, concerned that no one had compared the ultrasound and MRI images, or confirmed that the spots we were seeing in my breasts did indeed look benign. So, she had the chief radiologist from the hospital Breast Health Center lined up to compare the images and give his diagnosis. This was the same radiologist that had performed my core needle biopsy back in 2002, so we knew he was good. She called the imaging center that had done the ultrasound and asked them to send her the images right away, so that she could have all of the images to the radiologist that afternoon. They agreed to send her the ultrasound films.
By that afternoon, when she had not yet received the images by messenger as she expected, she called them again and found out that they had sent the images in the mail, and she would not be getting them until the beginning of the next week. She was not willing to wait, though, so she walked down the hill from her office to theirs and picked up a copy of the images in person, and hand-delivered them to the radiologist that afternoon. That’s how dedicated my surgeon was to her patients. Her sense of urgency, rather than making me feel more nervous, made me feel more secure. I knew her, so I knew she would be aggressive if she thought there was any risk of a positive diagnosis, but I also knew that she was upset that nobody else had bothered to compare the images and she wanted to confirm that their original negative report was actually negative.
The dread
The feeling of dread, which had gone away after the ultrasound, was back, but I was doing my best to ignore it. It was Friday, so I would have to try not to focus too much on it over the weekend. My inner voice was telling me that we were once again on that road toward diagnosis, but MG focused on the positive, that the surgeon was just being careful because of my history, that I had passed the five-year mark. Oh, how I wanted to be positive like her. She is such a natural optimist, and I am not.
Luckily for both of us, I had been given a prescription for a low-dose anti-anxiety medication in August. My prescription was only for half a milligram, but it was just enough to make it possible to sleep, even as I was struggling with feeling dread during the day. And of course, I was still trying to focus on my dissertation and other academic projects, like developing a poster for a conference. My plan for this year was to be on the academic job market, which was just getting underway, so I was also looking for jobs and post-docs, working on my CV, and writing cover letters. I was staying as busy as possible, which is fortunately very easy when you are trying to finish your doctoral dissertation.
Core needle biopsies
The next week, my surgeon called again. The radiologist did not like what he saw when comparing the MRI and ultrasound images and wanted to do a core needle biopsy on EACH breast. The spots didn’t look like lymph nodes to him. I definitely felt like we were walking down a very familiar path. MG tried to reign in my panic. In my gut, I believed they were going to find atypical ductal hyperplasia again, on at least one side, if not both.
On October 16, 2007, I updated an old college friend:
My life is crazy because of academic work, applying for jobs and post-docs, etc. Plus, my parents are damn near impossible to manage and I've just about given up trying. And I'm on the diagnostic roller coaster that breast cancer survivors get on every once in a while. Next Friday I have to get a biopsy, actually, two biopsies, one on each side. Now that all of the radiologists and doctors have finally made up their minds, I just need to bide my time until next Friday. Luckily for me, my youngest sister will be having twins any day now, so I will have plenty to keep me busy, as I'm staying with the 2-year old while she is in the hospital. As you know, nothing keeps you focused on the moment like looking after little ones.
I also sent an email to my siblings, letting them know my original message about my clean bill of health was premature, and I was facing core needle biopsies on October 26th:
… I'm feeling a little panicked, but we just got off the phone. Some of this is feeling too much like the first time, but Dr. G. isn't being as aggressive, which makes me feel like maybe we are just talking about confirming false positives and not looking at any new cancer. Dr. G. says that they are just being paranoid because of my history. I would rather that we do this than not do it, but I wish we could do it, like, tomorrow, and get it over with!
I was doing my best to follow MG’s lead – try not to worry until we knew there was something to worry about. Stop listening to that fatalistic feeling. I went to some AA meetings to focus on living in the moment, rather than projecting about the test.
This time, I insisted they use Lidocain, not Novocain, so I wouldn’t have a reaction to the epinephrine. The biopsies were performed with me half-seated half-lying down, face up, instead of lying face down on the special clamping table. I think this was because of the location of the spots where they had to perform the biopsies, which were closer to the center of my chest, rather than near my armpit, as the biopsy had been back in 2002. There was also a lot of blood during the biopsy, because we weren’t using epinephrine. This would have been fine if I had not looked down after they did the biopsy on the left. But I did look down, and when I saw all the blood pooling in my cleavage and running down my side, I started panicking. So the radiologist decided we would take a break, and he had MG come in the doorway of the room and give me a little pep talk. Which included her saying something like “stop looking down” and “stop looking at the monitor.” After a few minutes the radiologist came back, and we did the core needle biopsy on my right breast. The radiologist said that he thought he got most of the spot on the right, and that I should hang tight and wait for the pathology results.
When my surgeon called me with the biopsy results, she said that they had found precancerous tissue (atypical hyperplasia) in my left breast, although my right side was benign. That feeling of doom in my gut was getting even stronger. Here we were again. Now we were scheduling a surgical biopsy. But again, we were not being too aggressive, I think because we were all assuming, including my surgeon, that at the most we were probably looking at DCIS again. So, if that was the case, DCIS is not life-threatening. But because it was on the left side again, I knew that even if it was just DCIS, I would probably have to have a mastectomy.
Oh no, not again
On November 5, 2007 I wrote an email to a friend who I worked with during my first cancer, which included these comments about the mammogram and core needle biopsies:
I am also in a bit of a mess in terms of breast cancer. It appears that it may be back. I had a bad mammogram this summer, followed by an MRI and an ultrasound which both looked suspicious on both sides this time, rather than just on the left, so I had what they call a core needle biopsy 2 weeks ago. I'm benign on the right, but I have precancerous tissue on the left, which is what happened last time. So now I'm scheduled for a surgical biopsy on November 26th, the Monday after thanksgiving. I'm nervous because if it's back on that same side, I can't do radiation again, so I will have to have a mastectomy. I can't even imagine.
On November 6th, an update to my college friend:
As for me, the news from my biopsies is not as good as we had hoped. Everything is fine on the right, but I have precancerous tissue in my left breast, which is where I had the cancer before. I go in on Nov 26th for what they call an excisional biopsy, where they remove the precancerous tissue and then pathology determines if there is any cancer inside of that. We went through this the first time, so I'm pretty nervous that the cancer might be back.
At the very least, if it is just precancer, I have to take Tamoxifin and induce menopause, as my cancer is very hormone receptive. If there is cancer, then I have to have a mastectomy, something that pops up in my dreams every night since I heard about this. If the cancer is as early stage as it was last time, I don't need chemo, but if it is at all invasive, then I do…
November 14, 2007:
I am doing okay. Not thinking too much about the surgery or the possibilities of what comes next. I think I just got tired of being so stressed out about that. Now I've moved on to worrying about my presentation, the conference, and these interviews I have on Sunday morning about the fellowship I didn't get and this job I'm trying for.
Suddenly, I could see why some women have what they call a prophylactic mastectomy, which is removing a healthy breast just in case you develop cancer in the future. I had already had one biopsy on my right breast. Even though it was still healthy, it really felt like it was just a matter of time. But that was a decision to be made after the surgical biopsy on my left breast, which we scheduled for the Monday after Thanksgiving. In the meantime, I was getting ready to attend my annual conference, where I was scheduled to receive a national pre-dissertation award. The conference was in San Francisco, CA, one of my favorite cities to visit. My brother A lived in San Jose, so I was able to spend some time with him during the conference. And I was able to see a lot of the friends that I have been blessed to know during my years attending the conference.
At the annual meeting of my special interest research group at the conference, I told people I would be having this surgical biopsy, and that I was afraid my breast cancer was back. What I didn’t say was that in my gut, I knew it was back, I just knew it, and most days it was all I could think about. I would walk around the city, or the conference, and in my mind would be this voice, asking “what are we going to do, what are we going to do?”
The surgical biopsy was pretty much like the one I had back in 2002, with the exception that they changed the drug they put in my IV before they rolled me down the hall to the OR. It was just as effective at quickly stopping my anxiety, though, so I still called the anesthesiologist that administered it Dr. Feel Good. I was starting to feel like an old pro at this surgical biopsy business, which is not a good thing. But at least I was less anxious and less emotional during recovery. Because of my sensitivity to surgical tape, the surgeon used a different kind of tape to cover my incision this time. She instructed us to dissolve the adhesive with baby oil when it was time to change the bandage, and that worked really well. (This is noteworthy, because as you will see later, baby oil does not help remove every kind of surgical tape, and with some, you actually get quite the opposite effect.)
Later that day, I emailed my brother, who had sent a package of home-baked cookies:
Thank you so much for the cookies. They are almost gone!
Surgery went really well, and aside from some pain, I am doing better than we thought. We should have the results some time on Friday. I will try to remember to call you, but if I don't, please don't be afraid to call.
Thanks again, from both of us.
The results
I was diagnosed with Stage 1 invasive breast cancer the morning of November 29, 2007, almost exactly five years after I finished radiation therapy for DCIS. To say that I was shocked and disappointed would be an understatement. I spent the entire day in a state of shock, unable to get warm or to stop trembling, crying on and off all day.
Later that morning, I sent this email to a friend in Ithaca:
… I had an unreadable mammogram, which led to an MRI and an ultrasound, and then a core needle biopsy on both breasts. This biopsy showed precancerous tissue in my left breast, although my right side is still benign. So this Monday I had a surgical biopsy to remove the precancerous tissue and determine if my DCIS was back.
The DCIS is not back, but I do have an invasive breast cancer in my left breast, probably Stage I, but we won't know until the lymph nodes come out during the mastectomy. Because I had this breast treated with radiation before, I can't have breast-conserving surgery again, so I have to get the whole thing removed. MG and I are almost decided that I will get reconstruction, and that I will probably do the right side as well, just to avoid having to go through all of this again on that side later. The risk is pretty high, now that I've had two separate kinds of breast cancer on the left.
We won't know about chemo until the lymph nodes are tested, but my surgeon thinks that because I am so young, it will probably be recommended. We are still wondering if we should get a second opinion or not. I haven't talked to my oncologist yet; we have to see what she says. I've only known this since about 9am this morning. Thank God MG was home when she called.
… I'm pretty much still in shock, can't stop shivering. MG had to go to work for a while, but is coming home soon for a long lunch, and then my friend J is coming over for tea at 3:30.
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