Shockney therapy a boon for breast cancer survivors

Lillie Shockney isn’t a conventional nurse. A breast cancer survivor herself, she brings a down-to-earth, practical and often a lighthearted and humorous approach to a disease that terrifies many. 

Ms Shockney, who was guest speaker at a breast cancer seminar last week as part of the Lions Club of Tropical Gardens calendar of events for Breast Cancer Awareness Month, is a two-time breast cancer survivor and her mission is to help and empower others to beat the disease. 

Her sense of humour came to the fore when dealing with her cancer. She nicknamed her prosthetic breasts and wants to learn ventriloquism so she can have a puppet breast teach people how to check their own breasts. 

Her first diagnosis 20 years ago was almost “accidental”, she said. After she found a lump in her right breast, a subsequent mammogram showed she had a harmless cyst. However, the doctor advised that as she was between 35 and 40 years old at the time, she should have a baseline mammogram for her other breast. “That’s where they found the cancer,” she said. 

The mammogram found a multicentric cancer, meaning she had more than one tumour in the breast and she underwent a mastectomy. Initially, she was not a candidate for reconstruction, because of previous adverse reactions to general anaesthesia, so she wore a prosthesis. 

“I had to wear that breast prosthesis for a decade that I named Betty Boob. I wore her out of the store like a kid wearing new shoes,” she said. 

Two years later, she was diagnosed with cancer in the other breast, at the age of 40. Again, there were multiple tumours so she had a second mastectomy and was on hormonal therapy for five years. 

“When we had to call family and friends to let them know I’d been diagnosed again, rather than saying ‘I’ve breast cancer again’, my husband and I agreed that when we told people on the phone, we’d say ‘we found out today that Lillie’s breast prosthesis Betty Boob is getting a room mate and we want you to help us select a name.’ 

“It was a very effective way to neutralise the discussion about cancer and its treatment… Sometimes, when we are diagnosed with something serious, it scares people and they don’t know what to say, therefore, they don’t say anything. They avoid you at a time when you need them, so if you can figure out a way to neutralise this discussion, then do so,” Ms Shockney said. 

She named her second prosthesis Bobbie Sue. 

She wants to take the fear out of the disease and the examinations that can detect breast cancer. 

“I want to learn ventriloquism someday. It‘s on my bucket list … I think if breasts could speak to the public, they’d be very effective in explaining how to check them and the importance of getting them X-rayed once a year and it would be a way to neutralise the discussion,” she said. 

Ms Shockney underwent DIEP flap surgery 10 years after her second mastectomy. That surgery removed fat, blood vessels and skin from her stomach and transplanted it to her chest, reconstructing her breasts.  

She also had nipple reconstruction. “I call it the Dr. Jiffy boob procedures. It takes 11 minutes per side to reconstruct nipples. I had my areolas tattooed by a professional tattoo artist … My husband said he never thought he’d be in a tattoo parlour with a tattoo artist, a stranger, holding his wife’s breast and tattooing it,” Ms Shockney said. 

Sophisticated surgical techniques now mean that the breasts of women who have had mastectomies and reconstruction surgery are indistinguishable from healthy breasts, said Ms Shockney, who has written to Playboy to challenge the magazine to photograph her or other survivors so its readers can be invited to tell which side is reconstructed.  

“If you saw these women, you would have no idea which side is reconstructed. It would reduce fear if women could see this and see what it looks like,” she said.  

The old surgical method with which many people are familiar, where the breast is removed leaving a flat chest and large scar, is called the Halsted radical mastectomy, after Dr. William Halsted who developed the technique at Johns Hopkins, where Ms Shockney works as director of education and outreach at the Johns Hopkins Breast Center. 

“That was very debilitating, but it worked very well in saving women’s life. Dr. Halsted created it 100 years ago at Johns Hopkins, but I think he would be very pleased to see where we are today,” she said. 

She recounted her appearance before politicians in Capitol Hill in Washington DC in 1998 after repeated failed efforts to pass a bill requiring insurance companies to pay for breast reconstructions for cancer survivors. She pointed out to the mostly male panel that insurance companies already paid for testicular implants for testicular cancer patients. “I said ‘Gentlemen, I’m here to tell you it’s our turn. You can see what I’ve got and I can’t even see what you’ve got.’ We got the bill passed,” Ms Shockney said. 

She advises women undergoing reconstruction to seek out plastic surgeons specialising in DIEP flap surgeries. She estimates there are about 50 surgeons in the US who do the operation well, four of whom are at Johns Hopkins. 

Ms Shockney came to Johns Hopkins 30 years ago and specialised in brain tumours, but having survived breast cancer twice, she swapped specialities. “I really felt there was a message being sent to me and I thought this is where I was supposed to be,” she said. “If I got to be spared twice, I need to devote myself to this.” 

She has since become a staunch advocate for breast cancer patients and survivors and is author of 13 books and more than 250 articles on the subject. 

She has been tested for the mutated BRCA genes that produce a hereditary breast-ovarian cancer. The test was negative, but doctors believe she has a gene that cannot yet be identified as three generations of her family have had cancer. Her daughter began screening for breast cancer four years ago, via ultrasound and MRIs, according to a formula used in families where the mother or first-degree relative has been diagnosed with breast cancer before menopause and she advises other young women to do the same. “You take my age of diagnoses (38) and subtract 10. If that number is below 40, that’s the age she should begin,” she said. 

On the Johns Hopkins campus, she introduced an event called Breastival in 2001. The event, which promotes breast cancer awareness and teaches young people how to do self exams, has since been trademarked and is now held on college campuses and education facilities throughout the United States and she hopes it will also be brought to Cayman.  

She is also an advocate for the use of “navigators” – nurses and lay people who assist and navigate a patient through the process of being diagnosed and treated. “Everyone needs a navigator and they should think of that person as being joined at the hip with them,” she said. 

As for revised mammogram guidelines released by the US Preventive Services Task Force in 2009 that recommended mammogram screenings should begin at 50, rather than at 40, and that doctors should not teach women to do breast self-exams, Ms Shockney describes them as “stupid, and I’ve said so on national television”. 

“It doesn’t make any sense to me to tell women between 40 and 50 not to get a mammogram when 23 per cent of women who get diagnosed are diagnosed with mammograms between 40 and 50 … To combine that with saying a woman does not have to check herself either – they want to raise mortality, obviously,” she said. 

She advises women undergoing reconstruction to seek out plastic surgeons specialising in DIEP flap surgeries. She estimates there are about 50 surgeons in the US who do the operation well, four of whom are at Johns Hopkins. 

Lillie-Shockney

Ms Shockney
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