Archives for posts with tag: mammography

My husband and I host Thanksgiving every year and although not at Martha Stewart’s standard, I like to make the dinner tables pretty. Sometimes, John sets the table with our day to day plates and I say, “No, use the good plates.” The “good” plates consists of the full set of Franciscan dinnerware that my mother-in-law generously gave to me years ago. They match. There’s a gravy boat. There are enough for our extended family crew of 16-24 people, depending on the year. Matching, rarely used plates for fancy occasions.

Today I had a mammogram. I scheduled it many months ago. I remember telling my oncologist’s scheduler that I needed a diagnostic mammogram. She called over to the breast imaging center and told me that I didn’t need a diagnostic mammogram. I was due for a screening mammogram. I said, politely with a tinge of anxiety, “But I’ve had breast cancer.” She talked to the imaging center again and verified that a screening mammogram was what my oncologist had ordered.

I walked into the imaging center. It is in a building that adjoins my cancer institute, where I typically have my appointments. The cancer institute also does mammography. This time, I was sent to the building that is part of the same medical center but not part of the cancer center. Even though I’ve been there before, I was disoriented, even in the parking garage. I don’t have the best sense of direction on a good day but when I am nervous AND underground, it is much worse. The parking garage was packed and although I thought I was following the signs, I knew that I was anxious and distracted when I saw the sign, “Alligator” to show me that it was floor A, for the third time. I was driving in circles. I snapped out of it and worked my way down to “Camel” where I got a parking spot, wrote directions to finding my car after my appointment was finished, and went on my way.

As I walked into the waiting room, I had a sense of unreality bordering on derealization, a dissociative state experienced by individuals with PTSD. The waiting room felt unfamiliar but I knew I’d been there. Then I say myself there, in my mind’s eye. This is where I had the diagnostic mammogram, the ultrasound, and the core biopsy that would establish my breast cancer diagnosis and refer me to the cancer center, nearly three years ago. “Hello, trauma cue!” Once I recognized the cue for what it was, I could at least stop wondering and start coping.

The funny thing about this is that one reason I felt uncomfortable and scared was because I had been “demoted” to a screening mammogram and to add insult to injury, had to leave the safe and familiar nest of the cancer center, to do so. Mammography involves compression of the breast tissue between plates. I’ve had all kinds of mammography, screening, diagnostic, and PEM the latter being the fanciest and as it was in Phase II trials back in 2012, was not covered by insurance costing $2000 out of pocket. PEM took three hours following a 24 hour no-sugar diet and radioactive dye injection. Oh, and did I mention that each picture takes 7 minutes, all 7 of which the plates are compressed? Oh yeah, I just remembered that the PEM tech is seated right across from your eyeballs.  But I digress.

I found myself in the waiting room thinking, “I want the good plates. I want the diagnostic mammogram.” Yes, I know, the difference between mammogram machines is not the plates. But do you blame me for thinking about the plates? (Ladies who do mammograms understand.) When I checked in, the receptionist asked, “Who do you want us to send the report to?” I provided her with the names of my physicians. Then I anxiously asked, “But I am getting a verbal report from the diagnostic radiologist during my visit today, right?” She verified that I was. Deep breaths, Elizabeth.

I changed into a gown and waited for the mammography technician. She soon greeted me and led me to the exam room. She was a very small woman, under 5 feet. As she was positioning the plates, I noted that she was about the exact right height for the job. She would not have to bend over at all to get a view of breast level for most women. I thought to myself, “Why do I notice things like this?”

She was skilled and efficient. I was lead back to the waiting room near the changing room. I waited. I was distracted for awhile talking to other women, waiting for their results. I answered some email. A woman called my name, a different woman than the mammography technician. I didn’t like this. She led me into an ultrasound room and asked me to partially disrobe, lie down, and wait for the diagnostic radiologist, Dr. Bang. She said, “He will give you the results and discharge you.”

“Uh-oh, there’s something suspicious on the mammogram.” Dr. Bang soon came into the room and introduced himself. He was a young Asian American physician with a nice smile and a professional demeanor. One of the first things he said was, “I see a 2mm mass in your left breast. It is probably a non-malignant cyst.”

My thought, “Yay, he’s being straight with me. He told me what was going on as soon as he could without being cold and abrupt. Hmm, but he also told me that he thought it was likely just a cyst. I hope he’s not one of those physicians who is afraid to tell the bad news. I hope this does not affect his judgment.”

He was very thorough, I must say. I looked at the images from the mammography. Besides thoughts to myself like, “recurrence”, I busied myself by noting how much less dense my breast tissue looked in the images than they had in 2012. As many of you know, having particularly dense breasts makes most of the imaging techniques difficult to interpret because water (the source of density) shows up as white, which is also the color that tumors look on the images. Density is reduced with age, as breasts take on more fatty tissue. I could see this change in myself, likely accelerated by my cancer treatment induced menopause through Lupron and over two years of taking Tamoxifen, which I will likely continue to take for nearly a decade.

I am a geek and a healthcare provider. I am very happy for this when I am getting a stressful medical examination. I can distract myself with wonder and fascination. I also joke with healthcare providers. This lot were pleasant but business like. Joking would not be a comfortable option. So I continued to practice paced breathing to keep myself calmer and to geek out on medical technology and to reflect on the the marvel that is the human body, post-mastectomy and all.

Dr. Bang was having trouble finding the 2mm mass on the ultrasound. I asked him if it was located in the part of my breast tissue that is still very dense. He said that it wasn’t and was in fact very close to the surface. Then I thought, “Oh, if the cancer is near the surface of my breast, maybe I can get a small lumpectomy. That won’t be so bad.”

I was also thinking about what the next step would be. Biopsy? Then I remembered that I had gotten a screening mammogram and that the next step is usually a diagnostic mammogram. However, in this case, I was given an ultrasound. Hmm. A memory flooded back to me. Cancer treatment is like giving birth. They tell you what is going to happen like they are invariable steps. But it’s not. There are rules of thumb that I can understand but the course of assessment and treatment can change. I’m not complaining. If I were cookie dough, the medical team could use cookie cutters to do their job.

Another part of my brain was planning who and how to inform people that I would need follow up assessment. Before, I was pretty sure that I didn’t have cancer. After all, only 20% of biopsies are malignant. Mammography has a notoriously high false positive rate. That is one reason that it is so widely criticized. Actually, the prime reason is that we keep getting the message in our culture that it is far more accurate than it really is.

After what seemed to be 500 years, Dr. Bang told me that the cyst had been present on my last mammogram but it seemed to have grown since then. “I don’t think it’s cancer.” He told me that he wanted to “watch it” and that meant having another mammogram in six months. In the past, I would have been hesitant to ask my “worry questions” but I asked away. “Will this be a diagnostic mammogram?” (“Yes”.). “Will it be a 3D mammogram?” (“Yes”.)

There is no cure for breast cancer. I have had a status of “No Evidence of Disease” since my mastectomy on 8/8/12, which was proceeded by two failed lumpectomies performed by a marvelous and kind surgeon. Three of my four invasive tumors could only be revealed after surgery. None of the imaging technologies, MRI, ultrasound, and three types of mammography that were used, found them.

I was diagnosed nearly three years ago. I have thought about cancer every single day since I was informed of the diagnosis. That is over 1000 days. I don’t want “the good plates”.  I wanted the black and white plates. I want the plates of definite “I don’t have cancer” answers.

Cancer has provided me with a daily lesson that bad things, really bad things can happen. And I have learned to live a happy and satisfying life in the last three years despite all that my family has been through, a significant amount that has nothing to do with my cancer. Something that a pathologist looks for in examining an excised tumor and the surrounding tissue is for “clear margins”. A clear margin is the amount of healthy tissue that surrounds the tumor. Larger margins are better than small ones and if they are too small, as was the case with my first two surgeries, more surgery is recommended.

The “clear margin” is not magical or 100% accurate but it is meaningful. It is more than a good sign. There is always the possibility of disaster or hurt at the center of our hearts. I try very hard to live in the present and at present my margins are clear.

I probably didn’t sleep quite as well as I remember but boy, did it seem like I used to be an A+ sleeper before my cancer diagnosis. And then as I managed the shock of my diagnosis and subsequent surgeries, I’ve had to adapt to the side effects of medications that have put me into menopause until fall 2014, at least. Hot flashes and night sweats interfere with sleep as many of you know firsthand.

One of my female relatives has told me that my time of having quality sleep is over because I am menopausal. But I know what sleep does for me emotionally, physically, and cognitively. So I went on a multi-pronged attack against my insomnia, combining sleep hygiene (a real thing), meditation, behavioral techniques, nutritional supplements (magnesium and melatonin) and acupuncture. For awhile there I got almost back to normal except that I have chronic difficulty with early morning awakening though I am usually able to get back to sleep.

My insomnia over the past 17 months has come in waves. It ebbs and flows. It has troughs and crests. Peaks and valleys. Oh I am stuck in a circle of trite metaphors. And why is this? What is the reason for my perseverative triteness?

I am soooo tired!!! That’s why!!! I remember being in bed last night and feeling that wired feeling I used to get when I drank coffee too late in the day. An exhausted body and a brain that is all buzzy and addled. I remember being awake A LOT but I must have slept because time, somehow passed.

I have an MRI on Thursday. It is my first follow-up MRI since May of 2012 when I was originally diagnosed. I have been trying not to worry about it and mostly, I have succeeded. Well, I succeeded until last night. Now I am thinking about the ramifications of the information that will be gleaned from that scan.

There are four outcomes in any diagnostic procedure: (1) true positive (evidence of disease and it is actually there), (2) true negative (no evidence of disease and there is actually no disease), (3) false positive (false evidence of disease), or (4) false negative (there is disease and the test missed it.)

Unfortunately, we only know if the test is positive or negative and not whether it is true or false. The biggest problem in the assessment of my breast cancer has been that of false negatives. A routine screening mammogram picked up 1 of the 4 invasive tumors I had in my right breast. A diagnostic mammogram, ultrasound, MRI, and core biopsy confirmed that there was an invasive tumor. However, the MRI missed the 6 cm of DCIS and although mammography and ultrasound are not particularly sensitive to DCIS, MRI is. And putting aside the issue of whether DCIS is really cancer or not or whether it should be treated, I would have liked to have known that it was there using assessment measures less invasive than three surgeries.

I know that a lot of people complain about limitations in mammography in screening for and diagnosing breast cancer. And it would be easy to take my experience and just say, “Well yeah, mammography sucks!” My situation, however, is a bit different. The biggest complaint about mammography is that although it has high sensitivity (it has a high hit rate of detecting an invasive cancer if it is there), it has low specificity (it has a high false positive rate.) By definition, tests with high sensitivity have a low rate of false negatives. But I had many diagnostic mammograms and they missed a significant amount of cancer that “should” have been picked up. I also had multiple ultrasounds, an MRI, and even a PEM scan, for which there is mounting evidence that it is the best technique for women such as myself, who have more difficult tissue to read using the other methods because 1) I had dense breast tissue (premenopausal women have a higher proportion of water in their tissue, which shows up as white on scans, the same color as cancer) and 2) I had relatively slow growing tumors. More aggressive tumors are easier to spot because they produce calcifications, which in turn, are easier to spot on scans.

The good news about my induced menopause as well as the natural menopause that is on its way, is that the tissue density issue will improve, as fatty tissue increases. So diagnostic scanning techniques should improve for me as I age. In the mean time, I have to rely on the research I read prior to deciding whether I would have a unilateral or bilateral mastectomy. You see if I have breast cancer again it is much more likely to be in my left breast than in my right because the right breast was removed and replaced. (A risk of metastatic cancer is also a possibility and I am trying really hard not to borrow worry on that right now.) I looked at research on contralateral occult cancer (cancer undetected by scans in the opposing breast of an individual with unilateral breast cancer) in women who opted for bilateral mastectomy despite the fact that cancer was detected in only one breast. There were a number of risk factors for contralateral cancer, none of which I had. I looked at the probabilities of having cancer in my left breast both at the time of my initial diagnosis as well as cumulatively in the years to come.

Although my “right” decision may be different than the “right” decision for others, I decided that the risk of keeping my left breast was tolerable for me. I also knew that my systemic treatments, Lupron and tamoxifen, might address any occult cancer that might be present. And I also took into account that 25% of invasive breast cancer tumors don’t develop into dangerous disease. For example, some invasive cancers lose blood supply and just stop growing. (This is the issue of “overdiagnosis” that has been all over the Internet of late. I knew about it at the time of my diagnosis because I have a close friend who is a cancer researcher at Rutgers. She sent me a research article.)

I am praying for a “no evidence of disease” result on Thursday. But I also know that what I am hoping for is an ambiguous result. In the quest for black and white, a true positive result followed up by a positive core biopsy would be a clearer result. With the question, “is there cancer or not”, it’s a pretty clear answer. Obviously, there’s lots of gray still but relatively speaking, it is the clearest finding. And it is not the one for which I am praying.

I know I will cope with this. Something I have learned about myself is that I have become very good at coping with a sea of gray. In the meantime, I expect to get very familiar with the sounds, thoughts, and scenes, which are experienced only in the middle of the night and in the wee hours of the morning.

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