Chapter 4 - DCIS Diagnosis (Part 2)

 

The Xanax worked great. I slept easily the night before the surgery, even though I was nervous about the next day. And I was relatively calm in the morning. Even though my fear wanted me to refuse to walk into the surgery center, my feet kept moving me forward. Once I had been admitted and they had gotten my IV in, they let MG, E, and C come back and wait with me for the surgeon. (Again, this was pre-COVID. I miss those days when the patient could have their support people with them during these difficult moments.)

This was my first surgery ever. I was afraid of the possible diagnosis, but what was most upsetting was being on a gurney.  It reminded me of my Mom’s crisis that summer; I think for my sister and for me, and that was upsetting.  It was scary laying there on that gurney, not really knowing what this was going to be like, and having to put my life in the hands of the medical staff, when my mother had almost died in another hospital not that long ago.

We didn’t have much time to dwell on that before the anesthesiologist came with a syringe of Valium, and after that, I really wasn’t nervous or upset at all. (Since that day, I have known that whenever I am facing a procedure or surgery, I just have to stay calm until they come with the “happy juice” and then I know that it will be smooth sailing from there.) Then they came and wheeled me into the operating room, which was cold and filled with equipment and nurses and my surgeon.  Before I knew it, I was out.  

Then, for some reason, I woke up.  At first, I had no idea where I was. All I could see was blue, which was a surgical drape that they had hanging in front of my face.  I think they do this to keep the surgical field sterile, but it also kept me from seeing what the surgeon was doing. I was crying when I woke up, which I have learned is how I react to most anesthesia when I’m waking up.  I called for MG, who obviously wasn’t there, and then I called for the surgeon.  She answered me.  I said I wanted to see her, and she said she was busy, and that I needed to try to calm down.  Another moment that is funny looking back on it. Then the anesthesiologist said that I could look at him, and I turned my head to look at him, and the next thing I knew I was waking up in the post-op room.  Crying again and asking for MG, with the nurse assuring me that I would see her soon.

Soon I was awake enough to understand where I was and to remember why MG wasn’t with me.  Then the nurse moved me to the recovery room, where MG, E and C came in to wait with me until I was ready to go home.  First, I had to successfully drink ginger ale and eat some toast.  Then, my sister had bought me this teddy bear in the gift shop, which came with a container of peanut M&Ms, and I ate all of them.  So the staff agreed I was ready at go home. They won’t let you leave until you pee first, and are able to walk to and from the bathroom without passing out. Then they let me get dressed, which is when I noticed how sore my breast was from the surgery. They gave me more pain medicine, I rested for a few minutes, they brought me a wheelchair, and it was time to go home.  MG went to get the car, the nurse wheeled me down to the entrance, and we were on our way home.

As we were leaving, I gave the teddy bear to this young woman who was in the recovery room with her one year old son.  He had just had back surgery, not the first of his young life.  He had a while to wait before they would let her take him home, and he was getting restless, so I thought he could use the distraction of the new teddy bear.

Recovery from this surgery was more painful and took longer than recovery from the biopsy.  The incision was near my left armpit, and I had to wear these front-zip sports bras, which I could get on and off without raising my arms over my head. I could only wear button-down shirts, which was fine, since it was still summer.  The bras fit pretty snugly to provide compression, but even so, when I was sitting up or standing, the weight of my breast made the incision hurt. Also, my skin had a pretty painful reaction to the surgical tape that was holding the bandage in place.  Every time we changed the bandage, we could see that the rash was getting worse.  Eventually, my skin started coming off with the adhesive, which hurt. This reaction to medical tape got worse with every surgery I had after this, so now medical adhesive is always on my list of allergies.

The first time we changed the bandage, I saw the incision and the stitches and got really queasy. I was afraid to even touch it.  MG was not queasy at all, thank God, so she had me look away and changed the bandage for me.  Over the next few days, it got a little easier for me to look at the incision, probably because it got less bloody and bruised, but I never really got used to it. Bathing after breast surgery was a little difficult, but not too bad; at least, not after a simple biopsy like this one.  (Which didn’t feel simple at the time, believe me, but in comparison with my later experiences, it really was.) I had to use a mild, anti-bacterial body wash, and my surgeon told me not to let the water hit the incision directly. At first, the incision was sealed in a waterproof bandage, like plastic.  But once that bandage started coming off, we started having to tape fresh, non-stick gauze over it every day.  It had to be non-stick, so it wouldn’t pull on the stitches. When I showered, I would lather up my shoulders and neck, and then stand with my back to the shower, so that the lather would rinse down the incision, cleaning it but not letting the water hit it directly. 

After about a week, we went in to have the stitches taken out.  I was nervous, assuming it would hurt.  However, other than a little tug feeling when she snipped the knots on the threads, I didn’t feel anything.  After the stitches were out, I could shower like normal.

Getting the stitches out was easier than expected, but hearing the results of the biopsy was not.  Dr. G told us that inside the precancerous tissue they found a very small malignancy (tumor), less than a centimeter across, and that I had what they call ductal carcinoma in situ (DCIS)[1], or non-invasive breast cancer.  In other words, the breast cancer had not yet escaped its original site in the milk duct nor begun invading the tissue surrounding the original tumor.  At first, though, all I heard was the word “cancer.” All I could feel for the first few minutes was the fear that comes with hearing that word.  “Am I going to die?” That was the first thing I thought of.  Cancer. How could I have cancer? I felt fine.  We hadn’t found a lump, I had no symptoms, nothing.  We had been talking about the odds being in my favor at every step of this process, but here I was, with a diagnosis of breast cancer. I felt numb, in shock.  

Dr. G thought she had gotten the whole tumor out, but she needed to go back in and make sure they had clear margins[2]around the tumor site.  This news was almost more upsetting to me than hearing the “C” word.  I didn’t want to have another surgery; I was just getting over the last one.  Plus, we had reservations for a long weekend in Provincetown, and I didn’t want to cancel it. The surgeon assured us that the second surgery would go just as smoothly as they first, and that we could wait until after our vacation. She said that I would need to meet with an oncologist to talk about treatment options, which would probably include radiation therapy. So we scheduled the next surgery for after our trip, and she gave us a referral to an oncologist.  And then MG and I were supposed to go back to work.

You have breast cancer, but you have to go back to work. How do you do the that? How could it be true that I had breast cancer? I felt fine. There was never any lump; the image on the mammogram was just microscopic specks.  I saw them myself. How could they be cancer?  I couldn’t just go back to work.  Instead, we decided to have lunch at the Friendly’s in our neighborhood.  We had met at the doctor’s office, so I had to drive myself to the restaurant.  Somehow I got there.  While I was waiting for MG, I was trying to wrap my mind around this new identity: “breast cancer survivor.” What did that mean? Was I a survivor if I was never sick? What would radiation therapy be like? How could I prepare myself for something I could not even imagine?

More importantly, how could I go back to a job that felt meaningless to me now that I knew I was vulnerable to something like cancer? I didn’t want to die… ever… and have my tombstone read “she wished she’d done something useful with her life.”  Back in 2001, I had spent 6 months being unemployed, and MG and I had talked about my going to graduate school for my master’s degree in social work. At the time, the idea of returning to school was intimidating: What if I wasn’t any good at it? What would our lives be like without my income? What if I didn’t like the new career after spending all that money getting the degree? I was just too afraid of so much change, so I didn’t look into it. I just kept looking for another job in my field until I found one. But that day, the day I was told I had breast cancer, I decided that it was time to take the leap. So, for the next few months, while I was going through treatment, I was also applying to graduate school. It felt good to be taking charge of my life in one area when my health felt so out of my own control. 

We often hear people refer to cancer as a kind of “wake up call” in their life.  It could be about their career, as DCIS was for me, it could be about their relationships, or about how they take care of themselves. There’s just something about being confronted with your own mortality that gives you pause, makes you take stock of your life, inspires you to change those things that don’t work.  Unless it doesn’t, which is perfectly fine! 

“Life is too short” – we hear that a lot. When you have cancer, life can suddenly feel so short you don’t want to waste any more time doing anything that doesn’t feed your soul or make you happy. This is why some people call cancer “the great motivator.”  It's also why some people talk about looking for the “silver lining” of cancer, or even worse, tell you that you should find a silver lining in your own cancer. They talk about the “power of positive thinking,” the importance of having the “right attitude.” What IS the right attitude? Really, nobody has any right to expect any particular attitude from you. We shouldn’t put that kind of pressure on ourselves, let alone on anyone else. If you feel positive at any point during diagnosis and treatment, that’s great. If something positive comes out of your experience, I am happy for you. I also know, from my own experience and the experience of countless other cancer patients that I have known, that even if embrace the idea that a positive attitude will help, even if we find positive moments, we can also have some negative moments along the way. We have pain, we have fear, we get angry, we get frustrated and impatient. We grieve our losses. We ask “why me?” We get sick of people  saying “you look great” when we hate the way we look in the mirror. Those moments don’t mean we aren’t being positive. We can be positive and still have negative feelings. Don’t let anyone tell you otherwise.

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[1] Ductal carcinoma in situ (DCIS) is often considered the earliest form of breast cancer, or stage 0. In DCIS, abnormal cells multiply and form a growth within a milk duct of your breast. DCIS is noninvasive, meaning it hasn't spread out of the milk duct to invade other parts of the breast. DCIS is usually found during mammogram screenings, but it can be difficult to detect. Because of increased screening with mammograms, the rate at which DCIS is diagnosed has increased dramatically in recent years. While DCIS isn't life-threatening, it does require treatment to prevent the condition from becoming invasive. Most women with DCIS are effectively treated with breast-conserving surgery and radiation (http://www.mayoclinic.com).

[2] Clear margins mean that the edges of the tissue around the tumor are free of cancer cells. If the margins are clear, all the cancer had been removed (http://www.breastcancer.org/symptoms/diagnosis/margins.jsp)

Chapter 4 - DCIS Diagnosis (Part 1)

From the moment my gynecologist said there was a suspicious area in my left breast, things started moving really, really fast.  I had my first appointment with Dr. G just a few days later.  She was going to review the images and decide if I needed any tests, but other than that, I had no idea what to expect. Dr. G said that based on the images, which showed what she called an area of clustered micro calcifications[1] we should have a stereotactic core needle biopsy.[2] I had an appointment for this biopsy in less than a week.

The morning of the biopsy, I was feeling very anxious.  In part, because even though Dr. G had described it in detail, I was still having trouble imagining what it would be like.  But mostly, I was anxious because I was getting tested for breast cancer.  Even if you don’t have any breast cancer in your family, it is hard to go into a procedure like a breast biopsy without some degree of anxiety.  That morning, I prepared my bowl of cereal, set it down on the kitchen counter, and my kitten Stanley jumped up, flipped it into the air, and spilled milk and cereal all over the kitchen floor.  In retrospect, this is a funny moment, but at the time, it only added to my anxiety.

While MG and I were in the waiting room, her Mom came by to wish us luck and to tell us not to worry. I hadn’t told my own mother about what was happening. She was still very demented from her own health crisis, but even if she wasn’t, she had never been the kind of Mom that I would talk to about things like this until after they were over, if at all.  So to have MG’s Mom there for us was very comforting.

Hearing the details of how the biopsy was going to work was one thing, but actually going through it was very different.  For one thing, there was the table.  It was a wide table, pretty tall, with a hole at one end. The nurse prepping me for the biopsy had me climb up and lay face down on this table and put my left breast in the hole.  This hole was then closed until it was a clamp around my breast, basically anchoring me to the table.  This is to keep the breast from moving during the procedure. It felt as weird as it sounds, but it did not hurt. The radiologist used computer images of my breast to help him find the cluster of microcalcifications, and then used the computer to guide the machine to take out tissue for the biopsy.  I asked to see the images before the procedure, and frankly, the cluster was so microscopic I couldn’t believe anyone ever noticed it.  It made me really appreciate the technology of mammography, but also the skill of the radiologists who reviewed the images. 

The Novocain they used to numb my breast started to wear off during the biopsy, probably because set-up for the test took longer than usual.  They gave me a second shot, which kept my breast numb, but which also caused a pretty strong physical reaction. My body started getting twitchy, and I started getting emotionally upset and agitated.  

Novocain numbs the area where you inject it, and it contains epinephrine to minimize bleeding.  Unfortunately, I am sensitive to epinephrine, although I didn’t know this about myself before the biopsy.  The second shot was a little too much for me.  When it kicked in, I started twitching so much that the attending nurse had to hold me down on the table by my shoulders.  When the biopsy was over, she had me turn over on my back so that they could ice the biopsy site.  I was still shaking all over, and I didn’t understand why, so I started crying pretty hard.  I felt hysterical.  Luckily, the nurse was very patient and understanding, and she let me cry myself out.  We talked about the test, about my fears about the results, and about what I had been through with my Mom during that summer.  After a while, she figured out that part of what was happening to me was a reaction to the Novocain, although part of it was clearly my anxiety about the test and about my Mom’s health.

After a few minutes, I was able to calm down enough to get off the table and return to the changing room.  After I was dressed, the nurse bought me out to MG in the waiting room.  She explained about my reaction to the Novocain, and made sure that we both understood the instructions on how to take care of the biopsy site and what to do if I had any problems.  They call these “aftercare instructions” and you need to understand them so that you don’t get an infection, and so that you can recognize signs of infection if you develop one. They always warn you about the potential for infection, and the potential for excessive bleeding.  I’m sure this is because these risks are very real, but none of these things ever happened to me, although I felt like MG and I were prepared for the possibility, because we made sure to understand the aftercare instructions for every procedure or surgery I had.

I was still a little jittery when we left, even as we were walking out to the car, but about five minutes into the drive home, the jitters passed, as did much of my emotional upset.  This convinced me that most of my reaction to the biopsy was caused by the epinephrine in the Novocain.  This is a good thing to know about yourself – since then, I have had my dentist use Lidocaine, which is Novocain without epinephrine in it, and I have learned that I am not nearly as anxious when I am getting fillings as I used to be.

Physical recovery from the biopsy was pretty easy.  The procedure only leaves a little incision and some bruising and swelling, which is minimized by the epinephrine in the Novocain.  The nurse had given me this little ice disk, about 2 inches across, which I could tuck right into my sports bray, and I used it to ice the incision site every hour or so, and I took some Ibuprofen for the pain. I was able to return to work in a couple of days.  My breast surgeon had said the results would be back by a specific day, so MG and I planned to meet up at my office and call her together for the results.  MG came over to the office, we took my cell phone outside, and called the surgeon.  I remember that it was a nice, clear summer day in early August.  We got Dr. G on the phone, and she told us that the biopsy had revealed what she called “atypical ductal hyperplasia[3]” or precancerous tissue in my breast.  It was her recommendation that we go to the next step, a surgical biopsy, to remove all of the precancerous tissue from my breast.

As scary as this news was, she sounded pretty confident that the odds were in my favor that this would not turn out to be a diagnosis of breast cancer. So, we set a date for what she called an excisional or surgical biopsy, which is also known as a lumpectomy. This time, based on the amount of anxiety I had before and during the core needle biopsy, I requested some medication for anxiety, and she prescribed one Xanax pill, half of which I was to take the night before the procedure, and half that I would take that morning.  The biopsy itself would be done in the outpatient surgical center in her office building.  My sister E and her husband came into town the night before, to be with MG and me the day of the surgery. After the surgery, they would stay with me at the house for the afternoon, so that MG could go back to work.

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[1] Breast calcifications are calcium deposits inside the breast which appear as white spots or flecks on the mammogram image. Microcalcifications appear as extremely fine white specks on the image, are usually benign but can sometimes be a sign of breast cancer (Mayo clinic).

[2] A core needle biopsy is a “through the skin" (percutaneous) procedure that involves removing small samples of breast tissue using a hollow "core" needle. For lumps or lesions that can be felt by hand, this is accomplished by fixing the lesion with one hand and performing a freehand needle biopsy with the other. In the case of non-palpable lesions (those unable to be felt), stereotactic (computer-guided) mammography or ultrasound image guidance is used. Stereotactic mammography uses computers to pinpoint the exact location of a breast mass based on mammograms taken from two different angles. The computer coordinates help the physician to guide the needle to the correct area in the breast. With ultrasound, the radiologist or surgeon watches the needle on the ultrasound monitor to help guide it to the area of concern.  The needle used during core needle biopsy is larger than the needle used with fine needle aspirations (usually done in your doctor’s office), and has a special cutting edge. 

[3] Atypical hyperplasia is caused by a disruption in normal cell growth in breast tissue, which causes an over-production of normal-looking cells that accumulate and begin to look abnormal.  These cells can develop into ductal carcinoma in situ, or noninvasive breast cancer in the milk duct.  This can develop into invasive cancer, which can invade the surrounding breast tissue, lymph channels or blood vessels (Mayo Clinic).