How it All Started

An early improv quilt stitched during my cancer journey

My stitching journey began when I was diagnosed with Ductal Carcinoma in Situ (DCIS), which is a non-invasive form of breast cancer that was found during my annual mammogram in 2022. Prior to my surgery, I took a Sashiko class at the John C. Campbell Folk School. It wasn't until a few years later that I connected my love of stitching with that traumatic time in my life. To the left is one of my very early "improv" quilt wall hangings that I created, kawandi style. If you are interested in my journey with DCIS, keep reading! If not, stay tuned for the next post.

There’s nothing that prepares someone for a cancer diagnosis. Even though mine was caught at Stage 0, it was a “nuclear grade 2” on a scale from 1 to 3. This means it was an intermediate grade, and the tumor contained “comedo necrosis,” or dead cancer cells inside the 5 mm growth. I knew I wanted the cancer out of my body as soon as I learned of it. But being someone who does a lot of research, I spent a good deal of time online and reading different medical studies (not easy, but I have a daughter in med school so that helped) and joining an online Facebook group of women who also had DCIS. I live in a rural area, and there were no in-person groups I could join unless I wanted to drive over the mountain to a town over an hour away, and I did not have the time or energy to do so.

Women who are diagnosed with DCIS must make a decision that they are comfortable with, and I can tell you there is no one way to deal with this type of cancer. The choices fall in the following categories: watch and wait, have a lumpectomy, undergo a mastectomy. From the Facebook group postings, it appeared that a larger number of women chose to undergo a mastectomy. I understand that choice, because it removes the chances of cancer returning in the same breast or the other. However, it does not mean that cancer will not return, as it can grow in the chest wall.

I am someone who avoids pain if possible, and I also do not wish to undergo major surgery unless absolutely necessary. I couldn’t stomach the thought of having my breasts removed and then having painful expanders for implants that would have to be replaced within the next ten to twenty years. I am fully aware that I may face this option in my future if the cancer returns, since I cannot have radiation again on the same breast, and cancer often returns on the same side.

Some women, in midlife like myself, opted for the “watch and wait,” citing studies that state DCIS is overtreated and often does not turn into invasive cancer. But this seemed like too much of a risk to me. Invasive cancer definitely means surgery and potentially chemotherapy – something I wanted to avoid if possible. I opted for the removal of the tumor (lumpectomy) and undergoing radiation. This seemed to me the least invasive but a good way to address this cancer living in my right breast. It would be gone, and I would have that area nuked so any leftover cells (there’s no way to get every possible cancer cell) would be burned into oblivion.

After 21 rounds of radiation, I was then encouraged to take an aromatase inhibitor, or AI. Because my cancer was over 90% estrogen positive, it made sense to take an AI that stops the body from creating estrogen, since estrogen feeds cancer. As women, even in menopause, we always have estrogen stored in our body fat. I was on the cusp of menopause at the time and after agreeing to try an AI, I was given Tamoxifen.

I responded terribly to Tamoxifen. I saw my moods swing deeply into a black hole. My joints ached; I had terrible hot flashes. I stopped taking it and moved to another AI called Femara. This, too, caused hot flashes and other intolerable side effects that I will not list here. I stopped taking it.

In frustration, I again went to the seminal text on breast cancer, Dr. Susan Love’s Breast Book. This is a large book that is extensive in its research, advice, and documented studies. It is a must for anyone dealing with breast cancer. Even though I stopped the AI, it was clear from the current research that it was in my best interest to take them, even though bone loss is a side effect. I’m sacrificing bone health to avoid cancer recurrence. It is a tiring process that sometimes makes me just throw up my hands in despair.

I am now on Arimidex and have been for twenty days. At first, I felt nothing and was so happy to find a drug that I could tolerate. But two days before my follow-up with the oncologist, I began to cry often at various times. The doctor has encouraged me to give this AI four more weeks before reassessing my mood. I am hoping that the crying will stop by then, as it is awkward at best, and with it comes what the documentation calls a “low mood," a nice way of saying slightly depressed.

The typical route or “standard of practice” is to be on an AI for five years. At that point I can stop, and if I’m lucky I’ll fall into the NED category: no evidence of disease. But I’ll always be a bit paranoid, and I’ll never skip a mammogram.

Summary of key moments in my DCIS Journey:

2022 -- Post Mammogram & Biopsy: Identifying my DCIS was challenging because I have very dense breasts. This means that my tissue shows up on a mammogram as a white mass, and it makes finding cancerous areas more challenging. After the annual mammogram showed a suspicious area, I was immediately taken to another room in the hospital and underwent an ultrasound. The doctor who read the ultrasound then came into the room and delivered the news that I had calcifications, and that I’d need to have a biopsy.

The biopsy was scheduled a few weeks later as I wanted my husband and daughter (med school student) to be in town to be with me to document Q&A with the surgeon and then to provide care. The biopsy itself was not too uncomfortable physically, but very taxing emotionally because I was dealing with not knowing if I had the big C.

Post biopsy was riveting as I was at work when I read the results on the portal. The portal clearly stated that I may learn unsettling news and should probably wait to review the results with a doctor in the room, but I did not. I opened the report of the surgeon, learned I had a cancerous tumor, and walked out of my office and drove home. I felt removed from myself and was in shock and probably disassociated due to the stress. My husband was at his work desk and was surprised to see me. I blurted out that I had cancer and began to cry. From that day forward I did research on DCIS.

While I wanted surgery immediately, it was also summer and we had a trip to the beach planned. The surgeon encouraged me to go on the trip and have surgery afterwards since radiation would follow surgery. And sitting in the sun after radiation (which is a daily occurrence) was not a good idea. We went on vacation but a dark cloud dampened the experience, knowing I had a cancerous growth in my breast.

Mental health support: When I was given the diagnosis of cancer, I was connected to a service that provided mental health. Unfortunately, it was a short-lived service that did not continue post-surgery. The kind woman provided a listening ear and gave me insights on resources to deal with the shock of having cancer. It was very helpful in that moment, but overall the mental health support for cancer seems to have a significant gap. I would encourage all women going through this to find a support group in-person or online, as the community provides much needed emotional support.

Surgery: Surgery was a breeze. We had to be there at the break of dawn and, of course, wait to be moved into the room where the anesthesia was given. I woke to a nurse complaining about the computer, and I recall asking her if she was new. She scoffed somewhat and said no, but that computer software was, and she was irritated by it. One thing I’ve noticed in the world of technology and the medical field is that a computer is often in the way. I get that doctors need to document information, but more often than not they are looking at the computer, not the patient. I returned home with a bloody bandage, minimal pain (no prescription for any pain medications), and I went straight to bed. The most uncomfortable issue was that I am allergic to adhesives and the band aids used around the incision caused a painful burn, so I had to find other ways to bandage the area.

Radiation: Radiation was an odd process. I underwent 21 sessions, going to the cancer center every morning at 8 am, Monday through Friday. It is key to not miss a session. The initial visit involves getting a mold made and identifying exactly where the radiation is to be directed. Tattoos are also involved. These tattoos are tiny. I can’t even identify them now, but I’m a very freckled person on my torso.

I also had two sharpie marks that were covered with clear, round surgical tape and was told not to remove them. They were key, along with the tattoos, to lining my body up with the radiation machine. The mold that was made held the shape of my head and arms and upper back, so that I was in the same position for each treatment. My arms were up over my head, and I chose to wrap them around each other, as opposed to holding onto a T-shaped handle, which was also an option.

The Vesta machine is not like an MRI machine in that it’s open — no tube-like enclosure. Once all the angles were lined up between me and the machine, the technicians stepped out, and a massive door slid shut. It’s quiet. The machine clicks and whirs and I would see green lights with angles denoted. But most of the time I just kept my eyes shut. I could breathe freely but not move. 

One thing I got used to with the radiation process was having multiple people seeing me topless and arranging my bare chest on the table. I was quite lucky to avoid any severe burning that some women experience. I was given a specific cream to use, and I used it religiously three times a day to offset the radiation dermatitis. My skin never hurt or burned, but it did turn red and to this day, two years out, I have a shadow of where the radiation hit my body. It not only hit my breast, but the area under my armpit.

Post-Radiation: Even though the majority of my lung did not get hit by the radiation, the edge of my right lung did. No one told me that this may cause what is called pneumonitis, a pneumonia caused by radiation. It took me suffering from a deep, evil cough, fighting extreme fatigue, and crying over the phone to get an x-ray, which clearly showed pneumonia. I’ve suffered it twice, and gladly received the pneumonia vaccine this year to keep it away.

Another odd development post-radiation was that I developed Iron Deficiency Anemia or IDA. No one seems to know why this occurred, but the literature shows radiation and chemo can cause this to happen. My iron levels were so low that I received five infusions to bring me to a stable point and get rid of the ongoing fatigue that I had just dismissed as stress from cancer and radiation. I felt a sense of guilt in the infusion room because I was the lucky one receiving iron, while the majority were receiving chemo and the effects of such were much more evident on their tired bodies. The infusions worked and each time I visit the oncologist’s office (every three months), a blood panel is done to check a variety of things.