Officially a Lobular Breast Cancer Advocate; Sikora Lab @ CU

 

I think I can now officially call myself a lobular breast cancer advocate. 

With a generous micro-grant from BCCRF, we hosted a #lobularbreastcancer event at CU Anschutz yesterday, featuring a clinical oncologist and a basic science researcher focused on ILC. Some shocking stats here, including that ILC dedicated research accounts for 0.5% of all breast cancer research published each year, despite representing 10-15% of cases. We can do better. Thanks to researchers like Matt Sikora PhD, we will. You can check out his work at www.Sikoralab.com 

Thank you to BCCRF, #cucancercenter#lobularbreastcanceralliance and to all those who came in person to attend. 

YouTube link: https://youtu.be/ay8DTb_4h_k

#breastcanceradvocacy #ihavelobularbreastcancer#breastcancerresearch #invasivelobularcarcinoma#breastcancereducation

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

More Scans, and DNA Research from Dana Farber

A busy day in cancerland - a trip to Cherry Creek for an exam, a drive to Anschutz for an ultrasound, and a relieving radiology report. 

The new lump I have turns out to be a "calcified suture" but damn if that thing doesn't feel just like my tumor did. Like a BB. Like something that just shouldn't be there. But for now, another sigh of relief that the thing is not The Thing. 

In the name of science, I spit in a tube and sent my DNA - along with permission to obtain my medical records - to @countmein , a research endeavor from @danafarber that will track differences between my normal DNA, and my cancer DNA, to try to figure out how those cancer cells went rogue. 
Unlikely to make a difference in my personal treatment, but kudos to them for such an ambitious endeavor. If you are interested, you can get a kit for yourself at joincountmein.org - open to all cancers, not just breast. 

#scanxiety #lobularbreastcancer #ihavelobularbreastcancer#breastcancersurvivor #scarylump #ultrasoundday#itsnotcancer #fuckbreastcancer#doublemastectomywithoutreconstruction#breastcancerresearch #researchsaveslives #researchnerd#medicalresearch

One Year N.E.D. - I love Ned.

 

ONE YEAR N.E.D. (No Evidence of Disease)

One year ago today, I rolled into an operating room and had my breasts removed - and hopefully, all of my cancer with them. 

One year later, I can say I have No Evidence of Disease - recent scans look clear, no looming symptoms on the horizon to evaluate, no scary lumps or bumps to work up. No evidence of disease. 

The Sword of Damocles will hang over my head, at least until 2036, when I can breathe a sigh at 15 years that maybe, just maybe, that fucking cancer is gone and isn’t coming back. Until then, each day is a gift and a blessing not to be wasted. 

Celebrating today’s NED anniversary with my amazing husband @beewood17 and puppies in Grand Teton NP (ironically celebrating no longer having Grand Tetons) - snowshoeing, hiking, kissing, and laughing…as it should always be. 

This hasn’t been the easiest year, and certainly not the best, but I’ve learned so much about myself, my priorities, my circle of people, and how I want to be in the world. Thank you to everyone who has supported me so far. One year down, fourteen to go…

#ihavelobularbreastcancer #lobularbreastcancer #oneyearned#nocancerhere #doublemastectomywithoutreconstruction#noboobsnoproblem #flatandfabulous #fuckbreastcancer#grandtetonnationalpark #snowshoes #breastcancerrecovery#breastcancersurvivor #breastcancerwarrior

Invasive Lobular Carcinoma - The Stepchild of Breast Cancers

 It's never fun to be in the "other", "rarer", "more aggressive" category of breast cancers - that is, lobular breast cancer, the kind I have. It represents around 15% of breast cancers, but is often overlooked in its unique features that require different tools for diagnosis, treatment, and surveillance. 

The Lobular Breast Cancer Alliance's mission is to bring attention to LBC as a distinct disease, and to guide more research efforts towards its specific pathology. Here's a link to a short video that explains what we do and why we're doing it. Please consider supporting LBCAs mission. 

https://bit.ly/3sg6YoY

#ihavelobularbreastcancer #lobularbreastcancer#lobularbreastcanceralliance #lobularbreastcancerawareness#breastcancerawareness #breastcancersurvivor#estrogenreceptorpositive

More Imaging, More Waiting, More Hoping for Anything But Cancer

 

Another spin through the magnet - this time a full spine MRI that took 90 minutes. I understand now why people freak out on the table and refuse scans - it’s really claustrophobic, hot, and painful to lie motionless on your back for that long. 

Another scanxiety, another reckoning with what ifs and please don’t let it be THAT. Compression fractures, pinched nerves, osteoporosis, herniated discs - bring it on.

Just. Not. Cancer. I desperately want to make it to March 1 cancer free - exactly one year having no evidence of disease. One year isn’t a long time, and my shitty cancer hides and comes back a lot later, so this isn’t much of an anniversary, but goddamn it one year cancer free is one year cancer fucking free. 

Time to hydrate the gadolinium out of my kidneys!

#lobularbreastcancer #ihavelobularbreastcancer#estrogenreceptorpositive #scanxeity #mri #fuckbreastcancer#fuckcancer #breastcancersurvivor #breastcancerwarrior#triathletewithcancer #doctorsarepatientstoo

Writing Through Cancer. And PET scans.

 

One in 8 women will be diagnosed with breast cancer in the US, and even though we're a large group, every one of us has a different story and a unique path. 

I had the privilege of talking about my journey with @wildfire_bc_magazine 's amazing founder @i_heart_my_lifeon #theburnpodcast - April's literary magazine helps young women with breast cancer write their stories. 

Ironically, as I publish a link to my episode that focused on exercise and triathlon in my journey, I am in a forced sedentary position for 24 hours before a PET scan today. What next level hell is this when the pre-procedure instructions say Do Not Exercise? 

My piece was in the Body edition of Wildfire - and my body has changed in so many ways it's hard to process, thanks to a diagnosis of breast cancer at age 45. My mind has, too. The regimen and training of triathlon have kept that body functioning and moving forward. It has also kept me sane - hence my irritation over being told not to exercise. 

PET-CT today, and more scanxiety. A good day to re-listen to this podcast and remind myself what I've been through so far. 

#writingthroughcancer #lobularbreastcancer#estrogenreceptorpositive#doublemastectomywithoutreconstruction#triathletewithcancer #scanxiety #flatandfabulous#noboobsnoproblem