Lulú De Panbehchi finds comfort in double mastectomy; glad there was a 'solution' after two separate breast cancer diagnoses
Maria “Lulú” De Panbehchi is one of six siblings and her mother is one of 11 siblings, with no previous family history of breast cancer.
“I’m the only one. I won the lottery, the genetic lottery,” she said as she cracked a smile. “But I’m glad that it was me and not my sisters or my mother because I’m close to VCU Massey Cancer Center.”
In 2011, De Panbehchi was lying on her back in bed when she noticed a strange lump in her right breast. Although she considered herself a hypochondriac by nature, she thought for sure something was off.
Breast imaging results from four years earlier indicated that she had dense breast tissue, which put her at a slightly increased risk of breast cancer.
Her suspicions proved to be accurate, and she was diagnosed with lobular breast cancer, also called invasive lobular carcinoma, at age 42.
She underwent a lumpectomy, the removal of cancerous tissue in the breast, and additionally had a few lymph nodes removed for biopsy, which came back negative.
Living in Williamsburg at the time, De Panbehchi commuted to Richmond daily as a Spanish instructor at Virginia Commonwealth University.
Her oncologist at the time told her that the tumor was so small that the cancer most likely would not return and pills wouldn’t be necessary, but that radiation therapy was an option.
Genetic testing results indicated that De Panbehchi inherited a mutation in the BRCA2 gene, which greatly increases a woman’s risk of developing breast cancer.
She was referred to VCU Massey Cancer Center for additional consultation where she was told that her cancer was hormone positive and was prescribed tamoxifen, an estrogen-blocking medication. She continued to receive radiation in Williamsburg.
In February 2012, she discovered another lump in her opposite breast, this one much bigger and harder than the first. At this time, she had begun working on her dissertation proposal, part of her Ph.D. in Media, Art and Text at VCU, and decided to push off going to see a doctor until after her comprehensive exams.
After eventually going in for a check-up at Massey, De Panbehchi received another phone call in August 2012, almost exactly one year after her first diagnosis, confirming she had triple-negative cancer in her other breast. She remembers thinking to herself, “OK. Here we go again.”
She referred to Massey as the “BMW or Rolls Royce of cancer treatments,” and said that she has friends with cancer who were treated elsewhere and did not receive much of the information, guidance and care that were provided to her through Massey.
Because of her BRCA2 mutation, Harry Bear, M.D., Ph.D., a surgical oncologist at Massey, recommended De Panbehchi undergo a bilateral mastectomy (the removal of both breasts) in October 2012, as a means to prevent cancer from developing again in her right breast.
Mutations in the BRCA1 and BRCA2 genes account for five to 10 percent of all breast cancers, and around 15 percent of all ovarian cancers, according to the National Cancer Institute.
Because of the genetic correlation to ovarian cancer, Bear recommended that she have her ovaries removed as well.
“Although the BRCA1 gene is usually more associated with the development of ovarian cancer than BRCA2, it seemed prudent to remove De Panbehchi’s ovaries as a precautionary measure because she was going to be post-menopausal following chemotherapy,” Bear explained.
Beginning in November 2012, De Panbehchi started the first of 16 rounds of paclitaxel (Taxol), a chemotherapy, which she finished in early 2013. She also underwent radiation and was prescribed Arimidex (anastrozole), a hormone therapy pill.
Following surgery, it is common for breast cancer patients to experience depression or anxiety, but De Panbehchi did not want to take an additional medication on top of her cancer medications. She was encouraged to exercise instead as an alternative therapy, and De Panbehchi said working out completely changed her point of view during recovery and would recommend it to everybody.
For her breast reconstruction, it wasn’t until 2015 that De Panbehchi chose to undergo a form of microsurgery known as deep inferior epigastric artery perforator (DIEP) flap performed by Massey plastic surgeon Santosh Kale, M.D.
The DIEP flap is an advanced surgical technique where skin and tissue are removed from the lower abdomen, sparing the six-pack muscle (the rectus abdominus) and used to reconstruct the breasts. The blood vessels supplying the blood to that tissue must be temporarily disconnected and then reconnected once the tissue has been moved to the chest.
De Panbehchi said that a lot of people asked her soon after her diagnosis if she was considering reconstruction, but for her it was an afterthought.
“I would tell people ‘first I have to take care of surgery, then chemo and radiation. I’ll worry about reconstructive surgery at the end,’” De Panbehchi said.
Although it is a long and complicated surgery, De Panbehchi opted for the DIEP flap because most other reconstructive options use the the skin from around the upper chest and hers had been hardened following repeated rounds of radiation.
For De Panbehchi, the removal of her breasts signifies a resolution rather than a sentimental reminder of something lost.
“I do not miss my breasts. I am glad that I don’t have them because removing them was a solution for me. My father died of lung cancer after being diagnosed at an advanced stage. There was no solution for him at the time. There was a solution for me, so I’m happy,” she said, adding that whenever she hears the chorus to The Corrs’ ‘Leave Me Breathless’ she now thinks “leave me breastless.”
Kale performed a second surgery in December 2015 to remove extra skin from under De Panbehchi’s arms. She considers this the last treatment she had as a result of her cancer. She has not had any evidence of cancer since completing chemotherapy and radiation in 2013.
Looking back over the course of her treatment, De Panbehchi endured a long list of side effects that have arisen since her diagnosis. She was diagnosed with diabetes (something she believes she was genetically predisposed to anyway), dealt with infected chemo ports on multiple occasions, developed neuropathy in her right arm and foot, lost her hair and had a root canal during chemotherapy treatment, among others.
She burst into laughter as she thought back on a photo of her during treatment: “I’m standing in the middle of the street wearing a wig and fake boobs with a PICC line in my arm.”
For her neuropathy, De Panbehchi was told to stop taking Arimidex, and she received steroid shots from the VCU Hand Management Clinic. She has also learned to manage her diabetes effectively.
Through it all, De Panbehchi constantly wears a smile because it’s her philosophy that the more you smile, the more confident you feel.
For others who may be going through a similar diagnosis, De Panbehchi stressed the importance of asking a lot of questions, placing trust in your doctors, asking for support wherever you need it, maintaining a regular routine and letting people know how to treat you.
“You have to educate people on how to speak to you during treatment because people want to have an update on your health. You have to put a limit on how many times a day you’re going to talk about your cancer,” she said. “I would tell my son and my husband ‘today and tomorrow I do not want to talk about cancer.’ We wouldn’t mention the word ‘cancer’ unless there was a serious side effect or something, and sometimes we would go almost a week without saying anything about cancer.”
During her treatment, De Panbehchi relied on a fondness for analog photography as a means of coping and a method of chronicling her recovery. She would decompose the film with various substances (chocolate, wine, medication, crushed iron supplements, cookie crumbs) before taking pictures to distort the images as if being viewed through a filter once developed.
“My idea is that whatever makes me feel good is good for my photos,” De Panbehchi said.
She continues to take her own photos (both analog and digital), which can be viewed here, and now teaches Spanish at John Tyler Community College.