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Cancer Journey Health Women's Health

Never a Dull Moment : Li Fraumeni Syndrome

June 9, 2022

Hey Guys,

Welcome to another episode of my life or as my friends refer to it “Never a dull moment”.
It’s been two weeks since my double mastectomy, scratch that I sat down two weeks ago to write this but its been a month and some weeks since that operation. As usual I had so many plans on how I would recover and how I would document the journey but baybeee let me tell you; I was wrong. Funny enough, having gone through a lumpectomy, chemotherapy and radiation I truly felt like a veteran on the battlefield, again I was wrong. This new part of the journey started when my oncologist encouraged me to do a genetics test to see the likelihood of a recurrence. Two years ago when I had started the journey it was discussed but we opted to hold off on it until after because it wouldn’t have changed the treatment options for me and it was like $500 USD ( every mickle mek a muckle and it wasn’t immediate).
However, after treatment to help determine how we’d monitor the situation, I had to do it and honestly I’m glad that I did. I was diagnosed with Li Fraumeni syndrome a rare disorder that greatly increases the risk of developing several types of cancer, particularly in children and young adults. *The cancers most often associated with Li-Fraumeni syndrome include breast cancer, a form of bone cancer called osteosarcoma, and cancers of soft tissues. I wont lie when they told me I was like , you have got to be kidding me but as usual I wanted to know immediately how do we fix this?

That’s when the researcher called me and discussed key points with me:

1. There’s NO CURE for this ( Bruh)

2. The only options are increased monitoring so instead of one mammogram i’d do two, the next option a preventative double mastectomy.

3. I have to avoid a US diet that means, no dairy, no sugar, no red meat none of that delicious stuff ( I was already doing this but now I had to be even more strict).

Presented with these options I was like ok, I can keep monitoring and being healthy. At least that what I thought. What changed gradually was I started having immense anxiety, every. single. month. I’d have a mini panic attack that my right breast felt weird or some part of my body was not functioning how it used it. Just to give it some context, the document I got said Li Fraumeni had a 80 or so chance of presenting a NEW cancer in my right breast or could recur in my left breast .. A proper shit show for me and my anxiety.
After speaking to my family and my doctor we started leaning towards the double mastectomy, I was just holding on everyday but the anxiety was getting to the point that they were noticing it. So, for peace of mind and overall health I started seriously discussing removing my girls. There is nothing harder than making such a big decision on a “what if” but honestly, the odds were not in my favour. As I readied myself I remembered my friend Tara’s words to me two years ago ” It’s your breasts or your life, get it together”. Here I was repeating those words to myself, I should’ve listened.
So, after several consultations with Dr. Royes ( he did my lumpectomy), Dr. Venugopal (plastic surgeon) and Dr. Sheray Chin (my Oncologist) I started the process to do a double mastectomy. You can check out my Vlog of the journey here:



*https://medlineplus.gov/genetics/condition/li-fraumeni-syndrome/

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