Advocating for Invasive Lobular Cancer Research

When you’re a physician with cancer, it’s hard to resist the urge to advocate for the forces of medicine to come together to cure your particular type of cancer. 

It feels good to advocate for better detection, better research, and better treatment for ILC. Thank you so much to BCCRF for the micro grant that is supporting my efforts, along with the Sikora Lab at CU Anschutz.

We are hosting an in person event on 6/1 at the CU Anschutz Campus on ILC, featuring patient experience, clinical treatments, and advances in basic science and research. It is the first of its kind in the Rocky Mountain region, and we are hoping to bring awareness and raise support for the researchers focused on this disease. 

@colorado.cancer @rockymountaincancercenters 

#lobularbreastcanceralliance #lobularbreastcancerawareness#ihavelobularbreastcancer #breastcanceradvocate#breastcanceradvocacy #doctorsarepatientstoo#breastcancersurvivor #dosomethingaboutitorshutup

3 Month Oncology Check Up

 

3 month follow up with medical oncology. 

Lovely to be chatting about life and the future, instead of worrying about scans and random pains. Tumor markers remain normal, no evidence of disease. 

First visit where my MD used the word "cured" with regards to my cancer. I am not sure I'll ever sit comfortably with that: last week I took care of a patient whose breast cancer came back thirty years after initial diagnosis - my living nightmare, and the fear that lingers in my soul every day. 

That patient told me she "never really thought about it" in those intervening years - and I was overwhelmed with jealousy and awe, that a human brain could be quiet like that. My mind knows no such quiet. 

Cured. At only one year out, with 4 more of endocrine blocking meds, and 14 more of surveillance for spread, it seems premature. At the same time, she knows her shit. If she thinks I'm cured, maybe I should just run with that. 

Another happy development: the explicit mention of flat closure after mastectomy in the new 2022 National Cancer Center Network guidelines. Believe it or not, this was absent until this year and largely due to the amazing work of @notputtingonashirt and other flat-advocates, it is now listed as the first surgical option. Strong work, #flatties 

@nationalcancercenternetwork

#fuckbreastcancer #lobularbreastcancer#ihavelobularbreastcancer #lobularbreastcanceralliance#lobularbreastcancerawareness#doublemastectomywithoutreconstruction#breastcancersurvivor #breastcancerawareness#nevertooyoungforbreastcancer #flatclosure#astheticflatclosure #flattiesunite #aromataseinhibitor#estrogenpositive #nocancerheretoday

One Year Ago - The Day the Letrozole Started

May 1, 2021 - the day I started letrozole. 

May 1, 2022 - the day low back pain almost made me cry in the pool. 

Menopause is no joke. Aromatase inhibitors are no joke. I’ve aged at least 15 years in the last 365 days. 

The slow and steady decline in my fitness, strength, and flexibility might not be inevitable if I had some estrogen left, or the ability to make any. But the scorched earth that remains of my endocrine system is entirely without it - and what remains is a fragile, decaying shell of what my body once was. 

Yet still, I swim. I ride my bike. I desperately cling to the rituals and hobbies that made me happy before all of this crap. 

I haven’t missed a single dose of the poison that is keeping my cancer at bay, but I hate it more and more each day. Four more years, or maybe six, or maybe nine - no one knows the magic treatment duration. Just that I should take it as long as I can tolerate it. 

One year done…

#fuckbreastcancer #lobularbreastcancer #aromataseinhibitor#breastcancer #surgicalmenopause #letrozole #ihatethisdrug#doublemastectomywithoutreconstruction