Standard of Care in the Cancer World
Last week, I had the honor of giving the keynote address at Leslie’s Week Stage4Change conference. Cancer patients had the opportunity to share their stories with doctors, pharmaceutical companies and researchers. As patients, we are sharing our experiences with the hope we can evoke change. Here is my keynote speech.
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Last week was my first cancer anniversary.
In the last year I’ve never been so thankful for the miracle of modern medicine, my medical team, my medically minded friends and my health. It has also been a year of education and peek into the inner workings of the healthcare industry. For all the great things that are going on, there are still a few areas from a patient’s perspective that we can do better.
In what I call the “before times”, I thought I knew what standard of care meant. My understanding of the term was a set of commonly agreed upon medical best practices based on the latest learnings from science, cutting edge drugs and hospital care designed to optimize the health of each patient.
What I came to learn is that the term standard of care is a lot more fluid. It is not focused on the patient. And in some cases, it is the bare minimum of care expected to avoid negligence, a breach of duty or below “customary” expectations. In the business world, we would call that an MVP — a minimum viable product. This is FAR from my understanding of the term. I am fortunate to have received an excellent education and even though my understanding of standard of care wasn’t quite right, it is better than average which is scary and something I thought of frequently as I navigated through the system and advocated for myself during my own cancer journey.
I also learned that what constitutes the standard of care varies from hospital to hospital. And it is often under the control of administrators that are making decisions based on profit and loss statements, balancing the LOE — level of effort and billable hours of their medical teams with the amount of insurance payout as well as the nuances of new drugs and their expected payoff.
My rose colored glasses were quickly removed — even through my chemo haze. Fear set in — the system is not focused on my personal health. I am not Corey McCarthy, mother to Ellery and daughter of Judy or friend of Sandra — I am part of an aggregate number. A statistic that is being treated with measurable outcomes that have already been calculated — from a risk perspective derived from the finance and legal departments of the hospitals that provide my care.
Not that my doctors didn’t care. They did, BUT they were slammed. While I wasn’t necessarily a statistic to them, I was still a number. I have zero experience in the medical field and suddenly I felt like the sole person responsible for advocating for my successful medical treatment and management of cancer — which was aggressive.
I’ve been involved with Leslie’s week from the beginning. I was on the team that reviewed the first batch of heart wrenching nominations. Mothers who were faced with a life sentence and the fact that their children would grow up without them.
A mother myself, this was my worst fear. I knew enough about stage 4 metastatic breast cancer and the aggressive nature of triple negative cancer to understand that time was ticking, and if I didn’t act quickly enough, things could quickly slip from stage 2b to 3 where the statistics looked significantly more grim and closer to stage 4.
Knowing that the medical system and insurance companies weren’t on my side, I decided to earn my PHD in triple negative breast cancer. Every week that I went in for my chemo treatments, I had a list of questions to ask. I studied every CBC and metabolic blood test result and researched every high and low number to keep track of how I was doing and what it meant even though the oncologist said things would be all over the place and it was ok or that it was to be expected.
I wanted to know what was happening to my body. I learned a lot about chemo’s impact on the kidneys and liver as well as my ability to reproduce white blood cells and the toll this was taking on my bone marrow. I knew to pray for an absolute neutrophil number above 1.5 in order to be treated and not have to skip a chemo treatment that was actively killing the cancer.
What the doctors didn’t answer directly — I would ask the nurses administering the chemo. I was relentless and I’m sure they saw me as “Karen” no matter how nicely I asked my questions — but they were tired and overworked and maybe they were sometimes salty because they had to work an extra shift.
Today, I will share my story and the countless times I had to push because the “standard of care” sucks, the drugs are damn expensive, and where are the insurance companies? They are a HUGE part of the problem and in all my years working with Sandra and Leslie’s Week, I have yet to see them involved in anything we do.
I met the founder of Leslie’s Week, Sandra, in 2010 and we clicked immediately. I think we both had a sense that we were predestined to be in each other’s lives but it took us a while to understand how our life paths would unfold. Neither of us could have guessed that we would be bonded by her cancer experience and then mine 10 years later.
In 2013, I didn’t have a connection to cancer. I helped because I adore Sandra and her warrior spirit. I needed some of her warrior spirit in my life at that time while I dealt with my divorce and the devastating details that came with the custody of my one year old baby girl. I wanted to be part of something bigger than me. I wanted to focus on something that helped other people rather than wallow in my own situation.
Reading through the Leslie’s Week nominations is gut wrenching. Although divorce is nothing like cancer, I could empathize with the loss these families were experiencing. The loss of their health, the loss of the vision of a future with their children, the struggle to find a connection with friends that didn’t have the slightest clue of what to say or what you are really going through. I saw little bits of myself in each of them.
As a single mom, this last decade has been a busy one. I felt a lot of guilt about not being able to give as much to Leslie’s Week as I would have liked. In fact, I tried to quit a few times but Sandra never let me.
Maybe she somehow knew I needed to stay.
Staying probably saved my life.
In January of 2021 I decided to ditch the covid weight and get healthy. I downloaded the Noom app, got myself walking again and lost 8 pounds in a week. The rapid weight loss should have been my first red flag. On Thursday, January 28th, I felt a lump in the shower.
This isn’t the first lump I’ve found. There were a few mammograms in my late 30’s. I had just been to my OB/GYN a few months before. She noticed that my nipple looked different and more red than usual. I waved her off and said that is how they always looked.
As I was standing in the shower, I thought of her observation and kicked myself for waiving her off. I wish she would have pushed harder to have me checked out in October.
With this rolling through my head, I was terrified in a different way. The next day, I tried to book a mammogram appointment myself since it had been one year and 3 months since the last scan. I was told I needed to see my doctor first.
I pushed and within 12 hours, I was in the doctor’s office to check the box for a mammogram appointment.
I was told by my OB/GYN that it was likely nothing. Here comes the first hurdle — Mammograms, even with those that are marked urgent, were booked 2–3 weeks in advance.
During Covid, mammograms weren’t considered an essential medical need and there was a backlog of women like me trying to get in.
I pushed, I was able to get an appointment in 2 weeks. February 9th, 2021.
After two agonizing weeks, February 9th was finally here and at 2:45pm I walked into my 3pm mammogram appointment in Oakland. Willie, the kind gentleman behind the desk couldn’t find my appointment. When he searched further, he saw that the appointment was booked for the San Francisco location. After sharing this information, he simply looked at me. A normal person would have turned around and walked away.
I stayed. Nothing could force me from the spot I was standing in. I saw the sign above the door that led to the mammogram machine. In this weird moment, I thought of the secret and visualized myself walking through that door.
On the verge of tears, I explained to Willie that I had waited 2 weeks for this appointment and that in the 15 minutes I had, there was no way I was going to make my appointment in San Francisco. I told him that if I left, it would be another 2–3 weeks before they would be able to reschedule an appointment. I shared that I found a lump, that it was big and I was scared.
He paused. Looking at me through our masks I could tell he had a kind and understanding smile, he gently told me to have a seat and that “Willie was going to take care of me”. I sat down, full out crying now and willing myself to walk through that door to the mammogram machine. Willie came back after a very long 15 minutes and let me know that he was able to work some magic and get me in.
Let me pause here for a minute. During the pandemic, mammograms were not viewed as medical necessities. This created a backlog of people like me who desperately needed to be scanned and were told that 2–3 weeks was the soonest we could be seen. All of us in the room know that with aggressive cancers, time is of the essence.
There are so many ways that we can do better — this is one of them. One of many questions I have for you is what can we do to make sure that women’s health remains a medical necessity no matter what?
Imagine all of the ladies who didn’t get scanned and are finding out too late that they have what could have been a treatable cancer. Given the difficulty I have booking appointments in my oncologist’s busy schedule, I am sure you can all anecdotally answer this.
It is one thing to know it but a different thing to do something about it.
Another area where we can do better is our technology. My lump didn’t show up in the mammogram. One doctor explained that trying to see my lump was like finding a polar bear in a blizzard. Even if I could have had a mammogram during the lockdown, it would have looked clean and I would have received a cover you ass letter from the hospital letting me know that I have dense breast tissue which makes the findings inconclusive. I know this because I’ve been getting these letters for years.
I have another question for you. If we know that the mammogram can’t see through dense breast tissue, why aren’t people like me being scanned differently?People with dense breast tissue should automatically be sent on a different screening journey that includes ultrasounds or better imaging — as a standard of care.
Thankfully my lump was large enough and my breasts were small enough that the damn thing was nearly poking out of my skin so they took me back and did an ultrasound. As I laid there, I watched everything on the screen. I studied the technician’s face.
I memorized every contour of the lump, the shape, the dark spots inside the mass she was exploring. She called her supervisor in and they moved the device into my armpit. My hackles went up as they did this and I could feel it was a little sore. As they walked out of the room, they were silent.
I was studying their every move. Their body language, the way they were discussing what they had just seen. I knew it didn’t look good. As my OB/GYN had prepped me, the doctor came in to let me know that they were going to get me in for a core biopsy.
This was the easiest appointment I booked yet — they got me in at 7am the next morning.
That night, in what little sleep I got, I dreamt of the ultrasound. When the tech flipped back and forth between views, there were blue and red pulsing lights. In terror, I realized that was blood flow. The next day as I laid on the table for the core biopsy, I studied every inch of the screen as I had the day before. I saw the same blinking again and asked if that was blood flow. She confirmed that it was. I asked if blood flow meant it was cancer.
Her response was “Sometimes it isn’t.”
Sometimes it isn’t. F*CK.
In that moment and still today, I can’t tell you how much I appreciate her calm and very real answer. She could have said a lot of things but what she said was perfect.
I waited for 5 days. The biopsy was taken at 7am on a Wednesday and should have been back on Thursday or Friday at the latest. This particular weekend was President’s day weekend — both offices I was waiting to hear back from were closed on Monday. And I know this because I called both on Monday just to be sure.
I didn’t know that my OB/GYN was called at 8pm that Friday. Knowing I couldn’t do anything until Tuesday, she gave me one last weekend with my daughter in the “before cancer times”. With the words “sometimes it isn’t” rolling through my head, I did my best to be in the moment and enjoy every inch of time with my daughter. We had a blast in Tahoe, skied until the last lift every day and stopped for hot chocolate between every other run.
Tuesday, February 15th, I got the fateful call from my doctor. She told me that there were two little spots, just two millimeters each that they would likely remove in a lumpectomy, do a little radiation which wasn’t so bad and I would be fine. The nuclear score was a three so we knew it was aggressive and that estrogen and progesterone receptors were negative. While we waited to hear back on the HER2 results, she referred me to a breast surgeon.
I was shocked at how long it took to get appointments in a seemingly urgent situation. I pushed and was able to see the surgeon that Thursday.
When I met with the breast surgeon, things quickly got real. Based on the conversation with my OB/GYN and the primal desire to get the cancer out of my body as quickly as humanly possible, I was thinking that I’d be in surgery and off to radiation quickly.
And so began my education in cancer and standard of care.
Because my er and pr receptors were negative neoadjuvant chemotherapy was the standard of care that awaited. Still working without my HER2 results, which took a full 2 weeks to come back, my surgeon dutifully reviewed all of my options, entertained my questions and my creative solutions to get around my biggest fear — CHEMO.
In the meanwhile, I was set up with an oncologist that had an appointment available in another 3–4 weeks. Desperate, I pleaded with her team to slide me into a cancellation slot ASAP. A week later, I was in. Nearly one month after finding the lump I had my first meeting with the oncologist and the HER2 results came back negative.
My cancer was triple negative. F*ck.
My desire to get out of chemo was strong. I learned everything I could about triple negative cancer, the lack of cure and less than optimistic prognosis. The chemo treatments that would save my life was the most aggressive and promised to kick my ass and rip out my hair. By the time I met with the oncologist, I had already spoken with the entire Leslie’s Week board including Dr. Tweed, Dr. Taffara, Dr Spittler and exhausted Google’s extensive library of triple negative breast cancer material and knew I needed chemo yesterday.
I am not sure my oncologist was expecting the hell hath no fury like a newly diagnosed triple negative patient energy that I brought to our first zoom appointment. At first, she greeted me with the same pressed lip smile that I received from the breast and reconstruction surgeons that I already resented. She laid out the information that I already knew and gave me an even more sorrowful look while explaining that I would need to go through chemo.
I looked at her and said great, can we get the port placed tomorrow? You should have seen the look on her face!! After doing all the research and having been a part of Leslie’s Week for such a long time, I knew to RUN, not walk.
I had my scans done the following Monday, my port placed on Tuesday, covid shot on Wednesday and first round of AC happened on Thursday March 4th. One month and one week from when I first felt the lump.
This happened as quickly as it did because I pushed. If I hadn’t pushed to see my OB/GYN to get the ultrasound and the core biopsy, if I didn’t push to get into the surgeon or the oncologist, it could have been twelve weeks. I did it in five.
12 weeks with aggressive stage 2b triple negative breast cancer and no active treatment. How many weeks represents the difference between stage 2 and stage 3? The difference in statistics and prognosis between stage 2 and three is huge. Waiting 12 weeks to get to treatment is not ok.
Cancer is a full time job. The week before chemo was absolutely insane — plus I had started a new job that Monday.
And, oh yeah, it was also February of 2021, Covid was raging and people my age weren’t cleared to be vaccinated yet. Luckily I had already made friends with my plastic surgeon. After asking about my chemo regimen, he gave me that dreaded pursed lip smile and made a comment about taking photos of my hair before I lost it. In this moment, I decided that this was not the way I wanted to be treated so I shifted the energy. I looked back at him and said “If I’m going to be bald, I’d at least like to be cute. Do you have any botox you can give me?” Stunned, he opened the door and asked his nurse to bring some botox in.
Earlier, I overheard him telling another patient that his nurse ran one of the vaccination clinics. While he was injecting me with botox, I asked if someone in my condition would be allowed to get the vaccine. He told me that if my oncologist was able to write me a note, he was willing to get me in.
So I pushed to get vaccinated early. My oncologist agreed to write me a note and gave me another sad panda smile while she informed me that it would take months to get it. I shared the intel about my reconstruction doctor’s nurse running the vaccine clinic and his fantastic botox. Again, I wish you could have seen her face. I’m not sure if it was the botox or lead on access to vaccines but she was stunned.
When the PA met with me for chemo lessons a few days later, he let me know that my reconstruction surgeon’s nurse could get me in for a vaccine. I let him know that I was the source of this information. While I was happy to hear that they were sharing this with other women, these doctors and nurses are all a part of the same network. Why was I the source of their information?
Why was this not the standard of care? The pandemic had been raging on for a year by that time. Plenty of time to figure out a process to get high risk cancer patients vaccinated quickly.
With my face freshly filled with botox and my new chemo port in place, I went for my scans. Although my oncologist requested a pet scan to survey my body for metastasis, my insurance company didn’t think it was necessary so I did a CT and bone scan instead.
I have a question. If my doctor tells me that I need a pet scan, who is the insurance company to deny this? Triple negative breast cancer. If there was ever a time or a reason for a pet scan, would this not be it?
My oncologist fought with the insurance company over many things during my treatment. Given the influx in patients, wouldn’t her time have been better spent in other places than fighting with the insurance companies?
In all my years with Leslie’s Week, insurance companies have never been part of the picture — yet, they are one of the biggest parts of the problem. How is it that they have so much control over our destiny and my life?
The insurance company has control over my life. Think about that for a minute.
Who is running things here? Is it the hospital? Is it the insurance companies? Is it the drug companies? How on earth are doctors supposed to do their jobs within a system that isn’t set up for them to properly treat their patients let alone arm them with the resources, speed and agility necessary to help them thrive?
Who dictates the standard of care? From what I’ve learned — to some extent, apparently, I do.
Every week, I made it my mission to come in and ask more questions and earn my PHD in triple negative breast cancer. For example, my AC treatment began on March 4th. There was a lot of talk about Keytruda and a FDA approval at around the same time but my oncologist never mentioned this as an option for me.
During chemo, I got to know the nurses and asked questions. I learned many things from the nurses that my oncologist or PA didn’t share. It was the chemo nurses that asked if we were going to add Keytruda.
As it turns out, the FDA approvals and use cases were so new that the hospital system I was treated in hadn’t made Keytruda a part of their standard of care for triple negative although they were using it for other use cases. The lack of speed, information and options shared was frightening.
Chemo school was rushed and lacking a lot of critical information. There wasn’t any mention that adriamycin was cardio toxic and that my heart was going to be put through the wringer. They didn’t share that I was getting an echocardiogram to establish the baseline to measure the impacts that the drug would have on my heart. It was lightly mentioned that I should keep exercising during treatment but nothing was followed up on.
Pharmaceutical companies — please take note. We need to be able to treat cancer without killing patients from the effects of the drugs or leave patients with lifetime issues that need to be dealt with beyond cancer. And please — what can we do to spare the hair?
From a nutritional perspective, they say they told me not to eat sugar. I don’t remember them making a big deal of it and received the opposite message that all bets were off and I could do anything I wanted, including fistfuls of chocolate chip cookies and diet coke if it helped me get through. The cancer concierge sent binders filled with health information but most of it looked similar to what I saw in my high school education about healthy living.
I had a lot of highs and lows to navigate. Having access to counseling services with someone experienced with cancer care would have been extremely helpful. But also having the doctors suggesting this is instrumental in giving patients the confidence to pursue mental health assistance.
There was a psychologist they pointed me to but she was still in her fellowship. It was like talking to a kid — there was little empathy, understanding or life experience to give her the perspective necessary to help me deal with everything I was going through.
After treatment, no one covered the long term things I should watch out for like Lymphedema and all of the rules about what I can and can’t do with my right arm. My physical therapist filled in the gaps here.
Overall — there was very little instruction about how to live my life during chemo. The oncologist and PA were very dismissive about many of my questions and I don’t feel like options and corresponding statistics were openly shared and certainly not proactively.
For instance, when I was being onboarded, they asked about my birth control. They only looked into whether or not I could keep the Mirena IUD in during chemo and was told it was safe. My sister in law who came with me to every single chemo appointment encouraged me to dig a little deeper on the subject.
I had 10–15% of my progesterone receptor open. When I researched the active drug in Mirena, guess what. It was progesterone. I asked my oncologist about this which prompted her to dig deeper as well. She said that there was little risk but agreed that it was probably better to have it removed. I asked my OB/GYN about it and she mentioned that the risks were low and it was “probably” going to be ok.
Being triple negative, I knew it was important to shave as many points off the risk percentages as possible and made the call to remove the IUD. But why wouldn’t the oncologist tie these things together? Why wouldn’t she have brought this up and shared that there was a low risk that came with keeping it in?
Even though I was exhausted from the chemo and the massive undertaking of research for my PHD thesis, my due diligence remained constant.
I had been denied 3 taxol treatments because of low white and neutrophil counts. Carbo crushed me and made the AC treatments seem easy. At that point I was the master of my numbers and the timing of the Zarxio shots I became dependent on. To get that last dose, I knew I was looking at a full week of Zarxio injections to keep my numbers up and get the last dose of taxol and carbo. I knew that my survival statistics with carbo were meaningfully better than without and that last dose mattered.
Walking into that last appointment, I was tired and even after a full week of Zarxio, my numbers were low. Too low to be treated but they were close. Along the way one of the nurses told me — “You’re young and healthy — I’m surprised that they don’t treat you with those numbers”
Without seeing the actual numbers, I pushed to be treated and we agreed to go for the last dose of taxol. While I was settling into what I called the hair chair for the last time, the numbers popped up in my app. As a devoted student of the numbers, I knew that I was close enough not only to be treated there was a little room to go for broke and get the last carbo dose in so I pushed and my oncologist agreed.
After the chemo was done, it was time to decide on a lumpectomy and radiation or a double mastectomy. The MRI looked clear and we didn’t think that the nodes were involved. The triple negative diagnosis played heavily into my decision as did our technology and current screening abilities. Remember, the mammogram couldn’t see the lump and a lifetime of MRI’s and the constant stress that follows seems unnecessary.
With these factors in mind, I opted for a double mastectomy. Let’s talk about how we treat mastectomy patients in the US.
Post surgery, I had a slow, but significant bleed after my mastectomy that was luckily caught hours before being discharged. It necessitated me having to return to surgery at 5am for an emergency evacuation.
After 5 months of chemo, I was exhausted and would have felt more comfortable with the support and care in the hospital for a few more days before going home. Taking care of my own drains, managing pain meds, as well as knowing how hard to push walking post op was challenging. Within a few days post surgery, I was feeling good and proactively cut back on my pain meds which sent me into a bad place.
There was a morning within days of the mastectomy that I had to get my daughter to school. I felt so horrible that I couldn’t communicate what I needed with my mom because my brain couldn’t put the words together. So I had to push and muscle through the morning with no help because I couldn’t let my mom know what I needed and ended up in bed for the next few days. Luckily my aunt who was a PA and specialized in reproductive health for the entirety of her career came to help and got my pain meds back on track.
In other parts of the world, mastectomy patients stay in the hospital and under the watchful eye of nurses and doctors for a week and in some cases until the drains come out. We used to have that luxury here too. My aunt shared stories about how things frequently went wrong post mastectomy during her time working in the hospital and it was a good thing that the patient was still in there versus being home.
What changed? Did the medical community decide that it was best for the patient to fend for themselves at home? Or was it a financial decision that was made by the hospitals and insurance companies based on recovery statistics and calculated financial risk?
We can do better.
To recap, I was diagnosed with stage 2b triple negative breast cancer. As a part of my neoadjuvant treatment, I did 4 double doses of Adriamycin and cyclophosphamide. The cardio toxic Adriamycin caused a 9% drop in my ventricular ejection fraction which was validated with a cardiac MRI. The AC combo also took half of my hair with it. To avoid follicular damage, I cold capped which was arguably the worst part of the entire experience. — Probably because it wasn’t Paxman.
Following the standard of care for triple negative breast cancer, I went on to do 12 rounds on taxol, four of which included carboplatin which sank my struggling white blood count and absolute neutrophil. Because my bone marrow couldn’t keep up, I became reliant on shots of Zarzio which I had to self administer for most of my taxol and carbo treatments. 28 shots in all.
At the time of my double mastectomy I requested that my lymph nodes be dissected with the same care as my breast tissue because of the lack of precision that comes with the flash freezing lymph node check that happens while a patient is on the operating room table. Because I was triple negative, I wanted to make sure that we truly understood what the lymph nodes looked like under the microscope. Understanding the difference between stage 2 and stage 3, I needed to know that my nodes were truly clear.
The results of the pathology report showed no signs of cancer or residual cancer in my lymph nodes and breast tissue. I had a pathologically complete response to chemo.
My immune system is still struggling to recover and as of my one year anniversary last week, my absolute neutrophil count is still below 1.5 — too low to be treated for chemo. I have a lump at the surgery site that will be explored with a fine needle aspiration because the mammogram and ultrasound were inconclusive.
To ensure my continued health, I have refocused my research efforts and have become a student of longevity. In my new postmenopausal state, thanks to chemo — I just turned 46 — I am intermittent fasting for 13 hours every day, cut out sugar, diet coke, red meat and am sticking to a Mediterranean diet. My goal is to reduce inflammation, allow my body time to repair itself and ensure I am getting all the nutrients I need. I take turkey tail mushroom supplements which have been a part of clinical breast cancer treatments in Japan for more than 30 years.
Based on my research, I’m doing 20 minutes of HIIT runs 3x a week, my weight routine from physical therapy for a spot on my back that they say is arthritis but I worry is “mets”, walk the dog in the hills for 30 minutes almost every day and have a whole body vibrating plate to build bone density.
To control my environment, I have air purifiers all over my house. I’ve switched out nearly all of our shampoos, deodorants and other products to natural or at least less toxic versions. I do my best to sleep 8 hours a night even when I’m a sweaty mess and try to avoid stress — which as a single mom in the bay area and executive at a tech company is laughable.
I am still constantly on the hunt for new information about how I can evolve my habits to continue to reduce my risk of recurrence, heal and ensure my longevity.
Very little of this was covered in my original cancer training. After treatment, I made the decision to move my care to the watchful eye of the oncologists at UCSF where I found the standard of care to be much more comprehensive and inline with my original idea of what standard of care should look like.
They checked my hormones and offered post treatment options like AI for the little bit of progesterone receptor that was in my cancer. My former oncologist didn’t discuss AI, a bone scan or bone density drugs to lower risk of recurrence like the UCSF oncologist did.
Based on my research, I knew that the side effects of the drugs would lower my quality of life and that the percentage points they would win back for me weren’t as significant as the diet and exercise I’ve been relentless about so I politely declined. My new oncologist mentioned that she was required to offer these as options (with the statistics included) and that she agreed that my choices were the best for me — even the turkey tail mushroom.
None of this is designed to knock on my previous oncologist. My goal is to showcase the difference in the standard of care between medical facilities within the same region. What scares me is that my first oncologist was also in San Francisco and at a well respected medical system. If I noticed a difference between care in San Francisco, it scares me to think what it would be like for patients in tertiary healthcare markets.
Let me remind you. I have no medical background or inclination. I run marketing for a tech company. I have the benefit of being quick on my feet, ballsy and not afraid to speak up. I am not the person you should be worried about.
I worry about the people who rely on the same uneducated idea of standard of care that I had walking into this experience.
I worry about the women that are diagnosed and don’t have the benefit of having seen hundreds of stage 4 breast cancer patients come through the Leslie’s Week program and understand the hustle it takes to navigate through the system.
I’m worried for the majority of people who don’t have the same courage to speak up. I worry for the patients that don’t know which questions to ask and don’t have the time to research because they are doing the best they can to make ends meet. I worry about those that don’t have access to some of the most amazing breast cancer oncologists and surgeons that for me are only a phone call away.
When I step back and take a look at the experience and what I’ve learned, I realize how incredibly lucky I am. My connections and resources are rare. I am thankful for the high quality medical care I’ve received along the way. To the Leslie’s Week team — I am beyond thankful for each of you.
My last question to you is how can we do a better job? How can we work to share critical information and raise the collective standard of care levels across regions and medical facilities? How can we better care for the patients that don’t know what to ask and don’t know how important it is to be their own advocate?
I couldn’t be more proud of the work we do for Leslie’s Week but what if there wasn’t a need for this organization to exist? There has to be a better way.
It is up to you- the medical and pharmaceutical communities to figure it out. And quickly please. There is a whole generation of daughters, like mine and the many families that are honored by Leslie’s Week that have seen their mothers fight like hell. Given their family history they are now likely to face the same fight in their future.
Let’s fight like hell NOW so they don’t have to.
Thank you and join me for my next talk about insurance. I could write a book about the insurance issues I’v endured and am still experiencing. Please bring your friends from the hospitals and insurance world.
Thank you!
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I know this is a long read. Thank you for hearing my story. After I gave my speech, there were more that followed. There were two speakers that were supposed to address the conference but couldn’t. They both passed away in March because both of their insurance companies DENIED the life saving treatments needed to keep them alive.
One pleaded with her insurance company to keep her there to see her son graduate from kindergarten. They denied her and she did not make it to his graduation. I will be sharing the speeches from the other speakers — I implore you to help. We need more voices and more action. This is not ok.
