Miriam, 52, lives in Melbourne and has Ashkenazi Jewish heritage. Although there is a history of breast cancer in her family, she doesn’t carry a genetic variant.
Miriam was breast aware and knew that she had an increased risk of breast cancer because of her Ashkenazi Jewish background. A recurring cyst in her right breast prompted her GP to recommend an assessment with a breast surgeon. While a core biopsy was ‘all clear’, the cyst returned 6 months later, and her breast surgeon suggested that it be removed.
An excisional biopsy showed that Miriam had DCIS (ductal carcinoma in situ) in her right breast and therefore would require further surgery to give a greater margin. Further investigation was carried out with an ultrasound and MRI to look in more detail at her right breast, and to also ‘screen’ her left breast for any areas of concern. An MRI biopsy showed that her left breast also had DCIS, “It was totally asymptomatic, nothing was palpable, yet it was bigger than the right side”, she says, “I had no clue. Whereas the cyst on the original side was about 6 centimetres and you could feel it”.
Her surgeon recommended a mastectomy of her left breast, but she had the option to have a lumpectomy and radiotherapy of her right breast, “I was told that my right breast would be quite misshapen after the lumpectomy”. Miriam chose to have an immediate DIEP flap reconstruction, which also helped inform her decision to have a double mastectomy, “For me it was a no brainer. They were already doing one breast and because they could only do the DIEP flap once, I said to take them both. Then I’m not recovering from radiotherapy as well as surgery, and I know it’s all gone”.
Despite feeling confident with her team and that she’d made an informed decision that was right for her, Miriam says “It definitely took time to get my head around. At first my very strong thought was ‘Oh my gosh, what am I going to look like at the end?’.
“My breast surgeon showed me images of the difference between implants and DIEP, but my plastic surgeon didn’t have any images to show me because he said there were so many variants. He explained where he was going to make the incisions, but I wondered ‘how is this going to pan out?’. When I woke up, I was pleasantly surprised at how normal my breasts looked. Besides the bruising and swelling and everything else, they still didn’t look as scary as I thought. The abdominal scar is big. And to be honest, in this whole process as far as recovery and feeling good, that has probably been more of an issue for me than the breasts”.
Overall, Miriam is happy with the results of her DIEP, although she has swelling around her abdomen that was unexpected and feels uncomfortable, “I feel like I have permanently strained a tummy muscle”. Miriam hopes to have this addressed in her revision surgery, along with the abdominal 'dog ears’ and work to balance out the size and volume of her breasts.
Miriam says that when she looked at photographs of DIEP results on the internet before her surgery, the results varied enormously leaving her to think “am I going to look like a monster?”. Her fears weren’t realised, “The scarring on the breasts I’m not worried and concerned about. The actual scarring around the nipple is pretty amazing, there’s not much to see”. Miriam kept her nipples and feels that “psychologically that helps because essentially you still look the same in the mirror, albeit that the flesh inside is different”.
While before surgery Miriam was concerned about how her body would look, it’s how it feels afterwards that has also been important. “It’s very personal how people’s skin and scars heal. Generally, my skin heals well. It’s really early days, but the actual line of the abdominal scar doesn’t concern me, it’s like how it feels that affects how you feel emotionally too”. She adds that after surgery, “I was less concerned with how I looked physically as to how I felt. And I felt good, I really did. I had a mindset that I’m a good healer. I’ve had thyroid cancer previously 20 odd years ago and I recovered from that very well. So, I had the mindset that I was going to recover well. I was a little bit hard on myself on days where I felt a bit tired and not so great, but overall, I think a good attitude makes a difference”. It was something her plastic surgeon recognised too, “He covered the emotional wellbeing side of my surgery and that was something that resonated, the fact that he addressed it in the first appointment was reassuring”.
Miriam says of DIEP reconstruction, “The experience is a lot less scary than you think it’s going to be. It’s very overwhelming when you go to your initial appointment with the plastic surgeon and definitely a good idea to have someone go with you. It’s a 10- or 11-hour surgery and that’s such a big thing on your body. But at the same time, you forget and it passes. I think it would be a different story if you were having months of chemotherapy and treatment. I’ve been allowed to focus on healing. I was allowed to get back to driving after two weeks. To have that independence back fairly quickly from such a big operation, I think, is very telling of how quickly you can get out and about”.
Although she says that when she returned to work 3 weeks after surgery, “That was a bit of a mistake. I was too tired. So, then I slowed it down to a couple of hours a day, and then by week 4 or 5 I was pretty well doing normal hours”. She adds, “On the physical side we can be very critical of ourselves”, and her advice to other women would be to be patient with their recovery, advice she laughingly acknowledges she needs to follow herself: “Be kind to yourself and be patient”.
Read more about the hereditary risk of cancer for people with an Ashkenazi Jewish background.
Find out more about the the different diagnosis and surveillance scanning and imagery used for breast cancer
