January 27, 2021 - Four Years in Cancerland

 January 27, 2021 - a day like any other day. A wednesday. There was snow. I still had the steri-strips over my biopsy site, where they had punctured my lump a few days earlier. Four years ago today, I got the call. The call that no one ever wants to get. 

"It IS cancer"

Once you hear those words, you are inducted into Cancerland, and your life is never the same. You might have a break or a reprieve, but you are always a resident of Cancerland. Whether your treatment is ongoing, active, in remission, or constantly changing - you live in cancer land. 

When you think about retirement, life expectancy, the things you'd hoped to do with your life before you "couldn't" - you are seeing through the lens of cancer. It is never NOT a part of you. You may be able to shove it in a corner, put a lid on it, keep it from overtaking your life. You might even go a whole day or week without thinking about cancer. But you will always be a resident of cancer land. 

When you have hormone positive breast cancer, 4 years is almost nothing to celebrate: my insidious rude cancer doesn't come back right away. In fact, it RARELY recurs within the first 5 years - even though the party line is that being cancer free for 5 years is almost like you never had cancer....except when your cancer is slow growing, dormant, hiding, and likes to show up DECADES later, as my cancer does. So really, I wasn't expecting it to come back so soon, and even though I'm glad it hasn't, I know the first 5 years isn't the time I need to worry about - it's years 5 through 20. Yep, I'm a year away from STARTING the clock to recurrence countdown. Just when most people can breathe a sigh of relief and start to look forward, I will be ever looking backwards for that bastard to return. 

In the meantime, life in cancerland has given me lots to consider, in how I want to live, how I want to be in the world, what my priorities are, and what just isn't worth the emotion or energy. I've made some incredible friends, entered a world of research and advocacy, and pivoted from emergency to lifestyle and integrative medicine. 

Today, on my 4 year cancer-versary, I am starting an integrative medicine fellowship at the University of Arizona. I am embarking on a new path to helping cancer patients through integrative and complementary therapies, and continuing my lifelong education (it seems I just can't get enough school...). Looking back, I'm not glad I got that call 4 years ago, but I am grateful 4 years later to have had the opportunity to reassess what's important to me in life, and to always remember how grateful I am for every single day I have. 

Fuck you, cancer. I'm not living fully in cancerland anymore, but will always have one foot in the door. 

My Prenuvo Whole Body MRI Experience

 

  Prenuvo MRI - made popular by some influencers, and of questionable use for general public cancer screening. To understand how something becomes a cost-effective and clinically useful screening tool, we'd need an entire post and an understanding of epidemiology and health care financing - none of which I plan to discuss here. This isn't a post about whether or not this technology should be in wide use as a screening tool - it's one lobular breast cancer patient's experience so take it for what it's worth. 

Background: extremely dense breasts + lobular cancer = my mammograms x5 COMPLETELY missed my 3.6 cm breast cancer tumor. Thankfully my boobs were small and my lump was big, so I felt it. Was easily seen on ultrasound, and on Breast MRI. If only I'd known 10 years ago that dense breasts = higher risk for cancer + need additional screening, I might've gotten a breast MRI that would have easily shown my tumor. But I did not, and ended up Stage 2b instead of 1 because those stupidly false negative mammograms made me not get my lump checked out. 

This experience obviously influenced my opinion about screening, and imaging, and the longer you live with invasive lobular carcinoma, the more likely you are to have acquaintances and friends with the disease in whom conventional imaging has failed. I know of several cases where elevated tumor markers and circulating tumor DNA indicated there was a recurrence - but CTs and PET scans (even the estrogen tracer PET) could not find the lobular cancer. MRI did almost instantly. In fact, in the research/clinical ILC group in Belgium, this is their first line radiology test to evaluate for distant spread after early ILC diagnosis - straight to diffusion weighted water based MRI. No CT, no PET, no bone scan, no contrast, no dye, no radiation. 

For 4 years, I've lived under the assumption that I probably have cancer hiding somewhere, I just can't see it. This is the completely paranoid, scared, cynical me that knows the stats and the outcomes and is terrified of dying from cancer. Even with normal CTs and a normal (non estrogen) PET, I did not believe it. So when I learned about this test, I decided to go for it. 

The scans are available in several major metro areas around the USA, my closest in Denver. If you are healthy, you can just book a scan yourself. If you have a diagnosis of cancer within 5 years, you are required to go through a clinical review process that frankly was reassuring since I got to specify exactly what kind of cancer I had, and exactly where I wanted them to look for recurrence. 

The actual scan was fine - around 50 min for whole body + brain + spine. I watched netflix and chilled. No IV, no contrast, no needles. The results took about 2 weeks (because of the holidays) and I was emailed that my report was up. 

Then the freakout began. I was too afraid to look at the results. I was terrified that my biggest fear would be uncovered and they'd have found lobular cancer lurking somewhere. This was the only moment I regretted getting the scan. It took me a few hours, but I finally decided to open the report. 

It is an incredibly detailed report - to quote my oncologist, "I feel like I just examined your entire body in 5mm slices!" I opted for the whole body/brain/spine, and it noted every prior injury, herniated disc, arthritis, and all of the myriad things that are happening in this 50 year old menopausal body. What it didn't find, though, is breast cancer. 

For the first time in 4 years, I could take a really deep breath, and feel reassured that for the time being, I might have a normal life expectancy. I might die of something besides cancer. I had the first night of truly deep restful sleep I've had in 4 years. 

I had a list of "To Do"s and immediate triggers for my life that would've been in place should the results have been different. I'm a planner, a type A personality, and a "get your shit in order before it hits the fan" kind of gal. I've been planning for my death since the second I was diagnosed - and though I have no regrets about organizing my will, my estate, my clutter, and my digital footprint, I can now take a break in that planning and go for the "there's no cancer found" list of triggers: signing up for another 1/2 Ironman, setting some strength and physical goals, planning on a Grand Canyon Rim to Rim to Rim. Planning to turn 50 this year cancer free. 

I've spent far too much energy and time spiraling down the rabbit hole of cancer recurrence, and I'm so relieved to stop, just for a little while. Our family has a theme every year, and 2025 is our year of Celebration - we are celebrating life, love, family, friends, turning 50, and the many things we have to be fortunate and grateful for. It feels a little more like a celebration after this news, and it was worth every single penny. 

Here's to a 2025 Celebration! 

National Care Giver's Month

November is #nationalcaregiversmonth - behind every #cancerpatient is an invisible team of support, care, friendship and love. Cancer will bring some people closer, and it will push others away. You know who your "people" are when you're diagnosed with cancer. Some people I thought were in my corner simply abandoned me, and others I hadn’t connected with in years came thankfully roaring back into my life. 

This is my person - in life, in love, in romance, in friendship, in laughter and in all things. Brian, you never asked to get on the Cancer Train, but you jumped on with me and are still along for this crazy ride. I love and appreciate you and know I'd never have made it this far without your caregiving. 
Give a big hug to your cancer person this month! 

#fuckcancer #fuckbreastcancer #cancercaregiver#cancersupport #cancerfamily #besthusbandever #notalone
#proudflattie #flatandfabulous #noboobsnoproblem#flatvocate #hugacaregiver

@julielivermorephotography
@ariannafloral

Aromatase Inhibitors, the "Hormone Blocker": 3 years on....

In my patient support groups and online social breast cancer circles, I read many comments a day asking about whom has chosen to take these, who chose to forgo them, and how patients are considering "quality of life" over these drugs. I have now been on letrozole (Femara) 2.5 mg per day for three years and three months. I don't think I've missed a single dose. I don't like anything about the drug or its side effects, and there are many. But I like the idea of dying from cancer even less - so I take it every day, and I'm hoping someone reading this post will decide to stick with it too. 

I'm in no way suggesting these are easy drugs to take, or that the total and complete cessation of estrogen is easy to tolerate. When natural menopause occurs, there is still some circulating estrogen from adipose (fat) tissue to help ease the effects on bones, joints, and nerves. With aromatase inhibitors, it's next level estrogen deprivation, to the points of complete absence, and that's what causes worse "menopause" than the natural - the arthritis, the crippling joint pains, the vaginal dryness and pelvic symptoms - all are worse than they might  have been if we had been allowed to naturally progress to menopause. So yes, it's worse. 

And yes, these side effects are real. They cause decreased quality of life, pain, and it's understandable why women question taking them. So if you are early in your journey, and considering whether to take AI's, here are a few reasons you might want to: 

1. Not everyone has side effects, and if they do, sometimes they are better with time. Try the drugs for a few weeks, and see how you do. Don't anticipate you will automatically have every side effect you've read or heard about. Furthermore, there are three different AIs to choose from - if one is intolerable, take a break then try the next one. Many patients report different side effects from the three, so it's worth trying a second or third drug if the first one is intolerable. 

2. Many side effects are manageable - the arthritis and joint pain are truly manageable with movement, heat, and anti-inflammatories. If I skip yoga or my tart cherry supplements, my arthritis is immediately worse. But exercise every single day, sauna sessions, hot showers, and tart cherry supplements really do help. The pelvic symptoms can be mitigated with suppositories, lubricants, and PT. Yes, there are risks of osteopenia, osteoporosis, and exacerbation of high cholesterol and cardiovascular disease. And some of these do require more drugs to treat (I've done the zometa infusions, and now am on prolia for osteoporosis). No one wants to take more drugs to treat side effects of other drugs - but no one wants to die of cancer either. And the drugs for stage IV cancer have a whole lot more potential badness than many of these. 

3. It won't last forever - yes, it'll stink, and it might be 5 years, or even up to 10. Currently there seems to be no benefit for most patients past 7 years, and many of the side effects will improve once the medication stops. Some won't because menopause is forever, but the drug itself won't be forever. 

4. Because you don't want to die of cancer. My own personal choices on this journey have been made by that overarching goal: I want to die of NOT cancer. I will read literature, evaluate data, and look at studies - and as long as there's evidence that something will decrease my risk of cancer recurrence, I will do it. Maybe because I was 45 at diagnosis, I'm looking at things with a longer lens than someone diagnosed at 70, for whom a good 5 years now is worth 20 more years of life later - and that's OK. But the younger you are at diagnosis, the longer you will live under the specter of recurrence - and maybe the more likely you are to do everything. Not since tamoxifen has there been a major breakthrough in hormone positive early stage breast cancer until aromatase inhibitors. They remain the best tools in the toolbox for post menopausal women with HR+ breast cancer - and for lobular breast cancer, they've shown some benefit over tamoxifen for recurrence prevention. This is the best we have - and I never wanted to look back and wish I could've done something more in the face of recurrent or metastatic breast cancer. 

Below are a few of the studies showing the survival and recurrence data of these drugs if you want to read some data for yourself - but I encourage you to read the science, not the stories, and to see for yourself how you do before you decide not to pursue treatment with these drugs. 

1) Early Breast Cancer Trialists' Collaborative Group (EBCTCG). Aromatase inhibitors versus tamoxifen in early breast cancer: patient-level meta-analysis of the randomised trials. Lancet. 2015 Oct 3;386(10001):1341-1352. doi: 10.1016/S0140-6736(15)61074-1. Epub 2015 Jul 23. PMID: 26211827.

2) D'Onofrio R, Omarini C, Toss A, Sperduti I, Piacentini F, Barbolini M, Cortesi L, Barbieri E, Pettorelli E, Chiavelli C, Dominici M, Moscetti L. Adjuvant Endocrine Therapy in Premenopausal Women With Hormone Receptor-Positive Early-Stage Breast Cancer: Risk Stratification in a Real-World Setting. Clin Breast Cancer. 2023 Oct;23(7):712-720.e3. doi: 10.1016/j.clbc.2023.06.013. Epub 2023 Jul 7. PMID: 37507257.

3) Mamguem Kamga A, Billa O, Ladoire S, Poillot ML, Jolimoy G, Roignot P, Coutant C, Desmoulins I, Maynadie M, Dabakuyo-Yonli TS. Trends in endocrine therapy prescription and survival in patients with non-metastatic hormone receptor positive breast cancer treated with endocrine therapy: A population based-study. Breast. 2021 Oct;59:79-86. doi: 10.1016/j.breast.2021.06.003. Epub 2021 Jun 11. PMID: 34174766; PMCID: PMC8242053.

Sex After Cancer? It ain't the same....

As more and more patients survive early stage cancer, we increase the number of people facing the aftermath and long term effects of treatment. For some, it's organ damage from chemo, burns from radiation, hair loss, neuropathy - so many things to manage. For young women with hormone positive breast cancer, the fallout of early menopause can be devastating and difficult to live with. 

When I started this journey, I just wanted the cancer OUT and I wanted to LIVE. Once the terror began to wear off, I continued to make decisions based on wanting to live as long as I can, and to hopefully die from not-cancer. I begged to get my ovaries removed to starve my cancer - and only then did I realize the other parts of my body that would also starve. My bones, my brain, my cardiovascular system are all at risk and/or suffering - but holy moly the changes to my lady bits are next level. 

I've blogged before about the lack of data, info, and teaching about menopause to doctors, the lack of effective treatments other than hormones, the afterthought of older women. I appreciate so much that my oncologist and gynecologist sat me down and gave me the honest truth: my body, and my sex life, would never be the same. Starving your pelvic organs of estrogen results in all kinds of horrors - incontinence, dryness, painful intercourse, UTIs - and changes your intimacy with your partner. It's really important for partners (men especially) to understand what's happening biologically, so it doesn't disintegrate your relationship emotionally. Not wanting to have sex because it's painful is different than your partner thinking you're just not interested. 

The use of hormone replacement therapy is a god send to many menopausal women, but its use in women with a history of hormone positive cancer remains controversial. Newer data suggests the risks of cancer might have been overestimated, and that topical estrogen can be used safely in this population - but it's really scary for a cancer patient to hear "We have to remove all of your hormones to fight your cancer" and at the same time "we have some hormones to help the symptoms of your cancer induced menopause". Personally I have decided the risk is too great, and I would not risk cancer recurrence by using hormones. So I'm becoming an expert in the non-hormonal things we can do. A few things I've learned about sex after menopause: 

1. Use it or lose it. This is true. Vaginal atrophy begins with estrogen deprivation, and if you don't use those muscles, they can atrophy to the point of making any penetration (sex, pelvic exams, pap smears) incredibly painful. If you don't have a partner to use it, consider vaginal dilators. 20 min/day will keep those muscles active and healthy. 

2. Dryness and Pain - this affects you inside and out, thus should be treated both ways. I adore the Foria line of products for this (www.foriawellness.com) especially the Vibrance products that are made ESPECIALLY for this population. The Everyday Vulva Moisturizer and the CBD suppositories are a game changer (and their body wash is amazing for dry skin too). I recommend the suppositories 20-30 min before intimacy. Use code TCUSHING20 for 20% off their entire line - you will not regret it!

3. Incontinence/UTIs - this hasn't been my particular issue, but I hear about it all the time. Pelvic floor physical therapy is used often to help with strengthening the muscles and increasing control. Emptying your bladder fully and often can help prevent UTIs. 

4. Libido and Orgasms - unfortunately, these suffer from a loss of hormones too. My libido tanked, and even my orgasms seemed to be diminished in intensity, frequency, and achievability. The intimacy of sex brings partners together and keeps them there - so you have to figure out a way to maintain intimacy, even if you don't feel like having sex, or it takes you twice as long to have an orgasm that's 50% less intense. 

    TALK TO YOUR PARTNER. Maybe intimacy looks like hand holding, 20 second hugs at random during the day, kissing, or oral sex. It doesn't have to be penetrative vaginal intercourse - but if that was the definition of your previous intimacy, you might need to adjust that and find new ways to be intimate with your partner. You might need to rediscover oral sex, vibrators, or scheduled intimacy like date nights, in order to overcome the declining libido. Open and honest communication is paramount to navigating these changes as a couple, or for dating after cancer. I am beyond grateful to have a partner that not only heard those conversations with my providers, but was willing to make changes and work around my limitations to continue our emotional and physical intimacy. It looks different than it did before, but it is possible to maintain closeness and sexuality after cancer with a little effort and a lot of conversations. 

To my incredible husband Brian - I can't thank you enough for supporting my decision to forgo reconstruction, to remove my ovaries, to do whatever I can to prevent cancer recurrence. Our intimacy looks different now, but we are as close as we have ever been, menopause and cancer be damned. 

There can be sex after cancer - even good sex. Don't give up if it's important to your relationship and your self esteem. It might be different, but it can still be great. 

Half-Ironman #19 - Still kicking after cancer.

Redemption! After my mechanical bike disaster in Hawaii last week, I felt like there was some unfinished business. Ironman Boulder 70.3 - signed up yesterday, raced sleep deprived and after a week a sea level. 

My 19th 1/2 Ironman since 2016. My slowest of 5 times doing this race - and I’m ok with that. My body has been through hell these past 3 years, I’m still on cancer drugs, and I’ve aged 30 years in that time. It’s ok to be a little slower for now, and maybe there’s no going back, but I can still show up and finish 70.3 miles and that’s enough for today. 

And in case I didn’t say it loud enough, fuck cancer.

@smashfestqueen @team.vpa @fxckcancer@fxckcancerenduranceclub
@bambuwerx

#teamsfq2024 #vegantriathlete #fuckbreastcancer #letrozole#verzenio #fuckmenopause #cancercantstopme#triathletewithcancer #boulder70point3 #ironman703#doepicshit

2024 ILC Symposium - registration is open!

Registration is open for the 2024 #ilcsymposium in Leuven, Belgium! 

We have a small but fierce #globmob of global lobular advocates that continue to support ILC researchers and science - and while I wish I didn't have a "special" cancer that needed it's own type of conference, I sure do feel lucky to be part of a group of patient advocates that keep pressure on science to do better for #invasivelobularcarcinoma - we are 15% of all breast cancers, but only 5% of research and 0.5% of publications. We can do better. 
Hope to see my lobular family in Belgium this fall! 

#ilcsymposium #lobularadvocates #canceradvocate#patientadvocacy #lobularcancer #cancerresearch#breastcancer #lobularbreastcancer #leuven

Three Years Cancer Free

3 years cancer free today. I happened to be at a conference in the Grand Tetons on March 1, 2021, the year after I was diagnosed - so I decided my annual milestone should be spent in a national park. This one is pretty special - spent the day in #serengheti national park, Tanzania. Saw lions, elephants, zebras, ostrich, giraffes, and antelope. Took my first hot air  balloon ride. Grateful to be here, to be cancer free, and to be alive. Every day is a gift, and I’m thankful for every one. 

#cancerversary #noevidenceofdisease #fuckbreastcancer#fuckcancer #lobularbreastcancer #serengheti #travelingwithcancer #bucketlisttravel

Runway For Recovery - SoCal Edition

 

Amazing photos from the @runway4recovery show by @candacerockphoto - thank you so much for the opportunity to dress fancy, feel beautiful, and raise money for cancer patients. Gorgeous blue dress by @poshsocietyhb - love showing off my #flattie chest and wearing backless gowns with no bra. Most importantly thank you @beewood17 and my lovely daughter for walking the runway and standing tall by my side throughout this journey. I love and appreciate you both so much❤️

Runway4Recovery raises money to DIRECTLY support cancer patients with all of the non-medical costs of cancer - child care, groceries, rent, tuition; all the things we need during treatment and recovery that many can't afford. If you are so inclined, you can donate at https://runwayforrecovery.org/get-involved-runway/ and if you want to model, there are shows in SoCal and New England. My show bio is https://runwayforrecovery.org/meet-the-models-socal-tracy-cushing/

 #runway4recovery#socalrunwaymodel #fuckbreastcancer #fuckcancer#thisisbreastcancer #invasivelobularcarcinoma #densebreasts#proudflattie #flattiefashion #flatandfabulous#noboobsnoproblem

3 year cancerversary

 3 years ago today I got the call no one wants; I heard the words “it IS cancer.” Nothing has been the same in my world since.

Grateful to spend this 3 year cancerversary with my favorite humans in a cool place @marconimuseum raising money for @runway4recovery - we got fancy, we walked the runway, we cried, and we heard moving stories. (My runway dress courtesy of @poshsocietyhb ).

It was a small way to honor and support the 800 women who heard the C word today for the first time (800 women are diagnosed every day in the US w #breastcancer ). Thank you @beewood17 for walking by my side, and to everyone who watched from home and supported this incredible organization that makes direct financial grants to breast cancer patients.

#cancerversary #3years #fuckcancer#fuckbreastcancer #breastcancer#raisingmoneyforpatients#thisisbreastcancer#flatandfabulous#flattie

Trying to stand tall - not succeeding

 

Another October, another breast cancer awareness month. My third since diagnosis. It is tough to weather the onslaught of pink, ribbons, walks, and "awareness" - I am aware of breast cancer every single moment of my damn life. I would like to be blissfully unaware of it - but that is not an option anymore. 

This October I decided to become an ambassador for Stand Tall Aesthetic Flat Closure, and last Sunday I led a team of brave flatties at the Making Strides Against Breast Cancer walk in Denver. To be clear, we are not making strides against breast cancer. 1 in 8 women in the US will be diagnosed in her lifetime, and of those, 1 in THREE will go on to develop metastatic breast cancer and die from it. 1 in 3. That's where I live now....wondering if I will be the one. This hasn't changed appreciably in the 20 years since I graduated medical school - we are living longer after earlier diagnosis, and yes the 5 year survival looks great compared to some other cancers. But when you're diagnosed in your 20's, 30's or 40's with cancer, just five more years doesn't seem like a lot. And even though many of us will live those 5 years, many of us will still die decades later from breast cancer (see Suzanne Somers, obituary). 

Sobering, stressful, scary - these numbers are hard to ignore, and hard to escape. But in the meantime, I can at least advocate for body positivity after surgery, to avoid the pressure to get reconstruction, and to show other early stage patients that remaining flat is a beautiful choice. I don't begrudge anyone their implants, flaps, expanders, or multiple surgeries - but that was never going to be the plan for me. 

2 years later I have zero regrets about going flat. About removing a healthy breast for symmetry. About not "saving extra skin" for reconstruction later. I love not thinking about wearing a bra...ever. I am so grateful I had no complications, and I didn't have to put my body through the stress of multiple surgeries. But I got push back from my surgical team, also known as "flat denial", and multiple people tried to convince me I'd regret my choice. I do not. 

A woman spotted our signs and our group Sunday, and she made her Mom come say hi. Her mom had been flat for years, and never once felt proud or confident in her body. She saw us, and she cried. We had flattie hugs. Several other women saw us, and nodded or fist bumped or cried out "You're so brave."

I wish it didn't require "bravery" to be comfortable in your own skin. I wish these women felt whole, confident, and beautiful with their scars. I feel so grateful to show them they can. Thank you to all of the brave flatties who shared their photos with me before surgery so I could feel confident in my choice, and to all the women who walk topless and scarred and proud. I'm proud to call myself a flattie. 

UPDATE: I have subsequently been shamed for taking off my shirt in public, and  made to feel badly for doing something I "wouldn't have done when I had breasts". I am taking a break from the flat community for a while, and from social media too. I am heartbroken that this is leading to divisiveness and shaming within the breast cancer community. So sad.