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. 

ILC Bootcamp at CU Cancer Center

On Saturday, just in time for the 2023 ILC Symposium, we were honored to attend the ILC Bootcamp at the CU Cancer Center. This event was made possible by a grant from the Breast Cancer Care and Research Fund, as well as the CU Cancer Center and the Sikora Lab. We are fortunate to have a local research lab dedicated to ILC - this is a really unique opportunity for local advocates to learn about ILC and to be involved on a personal level with the studies that might someday cure our disease. 

We covered a lot today. We learned about the research life cycle, and how ideas become experiments that become published papers (it takes an average of four years!). We learned how to read research posters at conferences, and gave feedback to scientists on what advocates and patients want to see. We had a basic primer in cancer biology (all of a semester crammed into 1 session...), and connected researchers to advocates. Most importantly, we made some new friends, welcomed some new patients into our local network, and I got to hug a flattie in person (thank you Judy!). 

Some days it's hard to think about breast cancer. Gearing up for October and the pinkness of Breast Cancer Awareness Month especially makes me want to run and hide for 4 weeks. But I realize how absolutely unique and amazing it is to have an ILC research lab in my backyard, and a dedicated researcher who wants to cure my disease (thank you Dr. Sikora). Today was a day I thought about nothing BUT breast cancer, and it was a great day. 

Be an advocate. Meet a scientist. Work with researchers to help guide them on what matters most as a patient. It feels good. 

Riding the Triple Bypass & Peer to Peer Fundraising

 

 I needed some motivation and "why" to ride 118 miles and climb 30k feet in elevation in one day. Raising money for the Lobular Breast Cancer Alliance was it. I couldn't let down the family and friends who donated on my behalf to the ONLY organization in the US dedicated to my weirdo 15% breast cancer subtype (15% of all breast cancers isn't that small a number, but you wouldn't know it based on the research and publications in this specialized area). Thank you to everyone who supported our ride, thank you as always to my husband and partner in all crimes Brian, and thank you to my body for showing up and getting it done on July 22.

2 years of poison....starting, NOW.

 

Next stop on the Cancerland Railroad...abemaciclib! 

Tomorrow I will start 2 years of this incredibly expensive, less-toxic-than-regular-chemo drug called a CDK4/6 inhibitor (cyclin-dependent kinase 4 and 6, for those that speak cell biology). Some recent trials have demonstrated a significant disease-free survival interval for early hormone + breast cancer patients taking this along with antiestrogen therapy. 

Disease free. 

No evidence of Disease. 

The absolute best and happiest state you can hope for as an early cancer patient. 1 in 8 women in the US will develop breast cancer. Of those that do, 20-30% will progress to metastatic cancer - with chemo, surgery, radiation, ten years of meds. With doing all the things they told you would 'kill' your cancer. Your cancer will still kill you. 

Who is in that 20-30%? How can you prevent yourself from being there? Well unfortunately we don't know, and you can't. You can live your best life, increase your chances of survival with things like meds and exercise and not drinking, but at the end of the day, biology is a random bitch and I might end up there. 

Enter abemaciclib. 

The idea is that this might prevent a recurrence by blocking cell replication in any lurking cancer cells. So that they don't turn into metastatic cancer. So I don't die of breast cancer. This is a newer class of drug, and a more targeted therapy than traditional chemo, and I appreciate the trials and researchers that brought it to patients. 

Exciting side effects to anticipate: nausea. diarrhea. profound fatigue. low white blood cell counts and easier infections. hair loss. anemia. Horror stories of needing adult diapers and imodium to prevent diarrhea explosions in public. This should be interesting in 3 weeks when I'm supposed to race a half-ironman...

But I know this increases the chances if me staying in the 70-80% of women who outlive breast cancer, so it's a worthy sacrifice now for longer life later. I appreciate the hell I've put my body through to survive, and I hope it can manage this next phase without too much more collateral damage. 

2 years starting now....

If you knew death was coming...would you live differently?

Time is certainly a thing not to be taken for granted. Somehow most of us go about our lives working, saving for, planning for later. What we'll do when we are old enough but still young enough, when we have enough time, enough money, enough of whatever we think is the key to getting where we want to go. Somewhere inside we know that we shouldn't be sacrificing our time now for the promise of time later, but we justify it in a lot of ways.  

When you have cancer, you definitely do not take time for granted. The frustrating thing is that time is both shortened, and lengthened. Joy and appreciation for little moments abound, but it becomes overwhelming to plan for a future that might not exist. If you could know with 80-90% certainty that your cancer was going to come back, not a matter of if but when...

Would you want to know? 

In a few weeks, I will know. 

Finally FDA approved and sent by my oncologist, my tumor sample and a blood sample were sent off to create a profile of my cancer DNA, and to look for it circulating around. 

If it's NOT there, that is a huge sigh of relief and it means we haven't found any rogue tumor cells or missed any tumors lurking about...for now. Since they have my tumor DNA, we can retest for it in the future to know if things have changed. 

If it IS there, now or later, it's an early warning. But it means there's an 80-90% chance I will develop "clinically relevant" metastatic breast cancer within the next 9-12 months. 

It means I'll be in this weird state where we know the cancer is coming back, but we don't yet know where. It will mean a ridiculous amount of scans to look for spread. It will mean that I will die of metastatic breast cancer someday. 

Not today. Not tomorrow. But someday in the not-too-distant future. Short of the freak accident, car wreck, lightning strike etc, it will be breast cancer that kills me. 

And it will mean an even bigger change in life plans than the recent past has already given me. If I knew my death was coming, I sure would live differently today. 

Part of me regrets having the test, because there is bliss is not knowing. I'm a planner at heart, and I couldn't resist the idea of having a 9-12 month lead time on f'ing cancer, to do some epic life shit while I still can. But now that the test is pending, and the gravity of a positive result has settled in, I'm absolutely terrified. Maybe I won't look at the result - I wish I had that kind of self control. But right now cancer is in control, and whatever the outcome here, I can at least take some control back for now. 

 

Breast Density - Why It Matters, and Why the FDA's Ruling Comes Up Short

Last week, the FDA updated its rules about mammography and breast density. It is now required that women be notified of their dense breasts, and suggests "additional screening" if indicated. 

OK, well, it's a step in the right direction. I had dense breasts. So dense, in fact, that the 3.6 cm tumor growing there was missed year after year on mammogram. Unfortunately, those mammograms were dictated as Birads-2: "benign". They commented on density, yes - but the leap from 'you have dense breasts' to 'density hides cancer on mammogram' never happened in my mind. (Pictured above: my very dense left breast, with no evidence of cancer in 2020, that in fact, had a big lobular cancer.) 

So in 2020, when I felt a lump in my left breast, even though it felt weird and wrong, I LET IT GO. I did NOT SEEK CARE FOR A BREAST LUMP - please re-read that several times. I'm a physician. I knew it didn't feel right. But - "I had a normal mammogram 5 months ago, so this CAN'T be cancer" was my thought. 

How stupid I feel in retrospect. How angry I am that I waited another six f*ing months before getting that thing checked out. That thing that was very much a cancer, a big one, sitting there invisibly on my mammogram. I let the false reassurance of that mammogram delay my diagnosis. I knew my breasts were dense. I know now that that having dense breasts

a) increases the risk of developing breast cancer (independent of family history, lifestyle, BMI, genetics)

b) decreases the sensitivity of mammogram 

So the new FDA rules requiring notification of density and suggesting additional imaging for women with dense breasts are great. But there is zero mandate that anyone actually pay for that additional screening - so it's all fine and good to suggest maybe you need an ultrasound or an MRI, but those are expensive and require either good insurance, or mandates for coverage. Most women in the US have neither. You will need to advocate for yourself, especially if you are young and "without risk factors", to get additional screening. But please do it if you have any concerns, and dense breasts. Do not be falsely reassured as I was by "normal" mammograms. They weren't normal, they were hard to interpret due to the density. Density plus the sinister pattern of lobular carcinoma were a deadly combo that fell through every possible hole in the Swiss cheese of cancer screening. I did everything I was supposed to do, and my tumor was already stage 2 by the time it was diagnosed. 

Re-read your last mammogram report, and find out if you have dense breasts. If you do, get additional testing for absolutely any concerns or changes.
It might save your life. 

Scanxiety Day

 

Another scanxiety day for me - first MRI since double mastectomy, looking for local recurrence in chest wall and internal mammary lymph nodes. 

I hate cancer. Two years in, there’s no less anxiety, or fear, or anger. It’s not always front and center, but it’s always waiting in the wings. 

Every scan raises the executioner’s sword over my head - will today be the beginning of the end? How quickly will the sword fall? 

Hoping the radiologist takes a long lunch and doesn’t get around to this one today. I don’t want to know. I want to say “Not today, cancer” for just one more day. 

#lobularbreastcancer#doublemastectomywithoutreconstruction #breastmri#scanxiety #nottodaycancer #cancerlife#spotthecancerpatient