Robyn Towt “Breast implant illness was worse than having breast cancer”

Nothing will stop Robyn Towt from getting up each morning and doing what she loves the most -Helping women with breast implant illness. Over the past 5 years she has become a full time patient advocate who educates women with breast implant illness, while working on changing legislation and improving FDA communications.

Robyn has co-founded GPAC united, an organization that focuses on BII information and Global patient advocacy. Her goal is to implement positive changes in each country, enlarge the BII network while creating new opportunities for collaboration. There are few players here – the FDA, the medical practitioners, the breast implant manufacturing and BII patients.

Robyn’s personal story

Robyn was first diagnosed with cancer, Hodgkin’s Lymphoma, at the age of 23. She received strong radiation which later caused her some medical adversities. She was later diagnosed with basal cell carcinoma – a skin cancer, not once but twice, only where she had radiation burns from treatment. Robyn overcame it and continued her life feeling energetic and positive. She was later diagnosed with breast cancer in 2017. Being a cancer patient means that you are surrounded with numerous medical practitioners who collaborate from the moment you are diagnosed to your final breast reconstruction surgery. A team of doctors including oncologists, breast reconstruction doctor, a plastic surgeon, a chemo nurse and a nutritionist become your medical team who support your lengthy treatment.

“I was not surprised when a lump was discovered during a routine screening. I was told by my doctor that the strong radiation that I previously had may cause secondary cancers. To be on the safe side I decided to remove both breasts. I had a bilateral mastectomy with tissue expanders placed and three months later I had a breast reconstruction with breast implants. When I woke up from the surgery I was devastated to find 500cc of silicone implants in each breast. I hated it so much that I immediately scheduled a date to replace them with a much smaller size.

Having BII was worse than having cancer

This is when I started getting really sick, I first speculated that my cancer was back because my body was aching from head to toe. I couldn’t breathe and I constantly felt a lump in my throat, I couldn’t swallow my food properly. I was begging my doctors for answers, but they just gave me pills and no proper diagnosis. I was getting so sick, so quickly and it wasn’t the cancer that was invading my body, it was something else.

Meeting Michel- a turning point

When I met Michel, things had turned around for the better. Michel was sick after having breast augmentation with several sets of implants. When she scheduled her explant surgery, she was then diagnosed with breast cancer, and had a double mastectomy. She chose not to have reconstruction surgery and she stayed flat. All of her illnesses were resolved after having the breast implants removed. Her story and incredible support brought clarity to my confusion. I knew without a doubt that my implants were making me sick!

At this point I couldn’t even walk around the block. Michel told me all about Breast Implant Illness and introduced me to the term en bloc explant. My plastic surgeon, on the other hand, dismissed my self diagnosis, telling me that I didn’t have BII because my implants were smooth. With Michel’s support I ended up switching my doctor and having my implants removed by another plastic surgeon.

So instead of exchanging my implants to a smaller size I chose to remove them and go flat. After the explant surgery I bounced back so fast – I had that strong connection to my body and once again I felt healthy and simply me. “You feel yourself again” before I felt disconnected and right after the surgery I was able to swallow again and just be the old happy me.

Silicone implants were banned until 2006

Robyn knows the history of breast implants so well and she quickly accesses all the documents to support her statements.

Only breast cancer patients were allowed to get silicone until 2006. The FDA decision to restore silicone implants to the market in 2006 followed the earlier decision to approve the Saline implants. Mentor and Allergan the leading manufacturers were able to convince the REGULATORS that ruptured silicones and bii health elements were no longer an issue. It is not clear how they convinced them to overlook all the evidence, but they did successfully and the silicone implants were back in the market. Manufacturers fought to get implants back on the market. Regulators gave in. Now thousands of patients are paying the price.

(No) Follow ups on breast implant patients

The NBIR is a collaborative effort between the Plastic Surgeon Foundation and the FDA, patients and breast implants manufactures to strengthen the post market surveillance infrastructure for breast implants in the USA. The goal is to increase the number of NBIR participants and the number of cases collected in the registry. The problem with this initiative is that it is not transparent, no one can see the data entered by other participants. Until 2017 there was no existing system to report the ruptured implants and injuries caused to women, which explains the recent surge of injuries reported.

NBIR should be mandatory. This means that each plastic surgeon should register the implants he just placed in this registry but only as few as 1.5% doctors comply with it. Currently there is no way to trace women after they had their breast augmentation.

GPAC’s vision

The FDA needs to step it up, such as regulating mandatory reporting by doctors – why is no one following these patients?, or registering the implants to facilitate tracking of these patients. This way doctors will be held accountable.

Breast implants Pharma companies should be transparent, they must stop lying about the durability of the implants. These are not lifetime devices and they may rupture as early as 3 years. We would also like to see Accountability and informed consent. Patients should know the risks, and the doctor should spend a nice amount of time explaining the risks to the patients.

Everyone has a role and a responsibility. I would like to see all plastic surgeons listening more to women instead of dismissing them. If a PS doesn’t believe in BII he/she should be transparent and honest. They should send these women to a skilled plastic surgeon who has done thousands of en bloc explant and has the proper expertise to deal with these conditions. But please don’t try to convince these women that it is all in their head.

Doctors still misinform patients

It’s unfortunate that some doctors are so misinformed when it comes to bii. Some still argue that a ruptured implant contained within the capsule couldn’t harm a woman therefore, there is no pressure to remove it. Or in other situations these doctors convince women that silicone implants are safe and couldn’t rupture. Plastic surgeons should state the same in their websites.

Robyn’s outlook on life

I feel blessed to wake up and put my feet on the ground. I believe that everything that happened to me happened for a reason – I live my life without anxiety of having cancer recur. I am focusing on doing my service to other women every day because it brings me fulfillment and a sense of gratitude.

Get in touch with Robyn GPAC United