Women Patient Stories Archives

Living With CLL: Christina’s Diagnosis Story

Living With CLL: Christina’s Diagnosis Story from Patient Empowerment Network on Vimeo.

After chasing a diagnosis for almost a year, Christina Fisher shares how she was finally diagnosed and how she lives well with CLL.


Transcript:

Andrew Schorr:

Andrew Schorr with Patient Power here with Christina Fisher from near Portland, Oregon, diagnosed in 2013 in an odd way with a consultation with an ENT specialist who did a biopsy basically or an excision of your swollen lymph node, and then it turned out to be CLL.  Shocker, right?

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  And so that had you go on a journey to different oncologists and ultimately CLL specialist, and so you’re doing well now with some of the latest medicines, in your case venetoclax, Venclexta, with Rituxan and delivered with Rituxan (?) high cell as kind of a quick infusion.  How are you doing?  Are you doing well?

 

Christina Fisher:

I’m doing well.  It’s been a little bit bumpy over the holidays for the last four months or so, but I’m emerging, feeling well.  Thank you.

 

Andrew Schorr:

Okay.  But it was also bumpy in getting to a diagnosis, getting to the right specialist, right? and knowledgeable team, so what is the lesson for people to be their own advocate?

 

Christina Fisher:

Be dogged in your determination.  Do not give up.  Be your own advocate.  Do your research.  Have your questions ready ahead of time.  Just don’t give up.  I had so many obstacles trying to arrive at a diagnosis, and the frustration was insurmountable, but I didn’t give up.  I knew something was wrong.

 

Andrew Schorr:

Being in your mid‑40s and having weird symptoms when CLL is often a disease of people older, your doctors were saying, oh, you’re fine.  I mean, the idea of leukemia never came up early on, right?

 

Christina Fisher:

My primary care physician was flip about it and had actually made several comments such as you are way too fit to have cancer, your blood isn’t displaying anything in particular, almost to the point where he made me feel like a hypochondriac.  But I had a large lymph node swollen over my collar bone that would not recede, and I went through a year of asking him for a biopsy, asking him for further tests, to the point of tears in frustration, and I received no answers.

 

Andrew Schorr:

And it was ENT specialist, a different doctor, who finally said, let’s take a look at that lymph node.  That’s what led to the pathology report, and that’s when‑‑you got a call a couple of days later.  Tell us about that.

 

Christina Fisher:

Well, initially my eyes had swelled shut.  I went to an ophthalmologist who was roommates with the ENT, and it turned out that their other roommate had removed my swollen gallbladder as well.  They started talking about me.  And so they sent me to the ENT, and she was extremely efficient and tuned in, and she saw the lymph node over my collar bone, and she had done other things that ENTs do during the exam but ultimately stated that something else is wrong with you.  Do you have a moment?  Let’s step into the surgery room and we’re going to extract a lymph node right now.

 

So that caught me off guard, but I was game.  And she removed a small lymph node from my neck and said it will be about a week to do the pathology, but, yes, called me in two days.

 

Andrew Schorr:

And said, what do you think you have?

 

Christina Fisher:

She said, what do you think you have?  And I‑‑she said, you know you’re sick.  What do you think you have?  And I said, I think I have leukemia or a form of it.  And she said, you’re right.  Would you like to sit down and talk about it?  So it was kind of hard to hang onto the phone at that moment, but I wanted to know what kind it was.

 

Andrew Schorr:

Now, Christina, you found your way to a CLL researcher.

 

Christina Fisher:

I did.

 

Andrew Schorr:

Specialist.  So what is your advice to people when we know there’s this whole changing world of treatments and combination therapies and clinical trials.  You’ve been in some clinical trials.  What would you say to patients about at least getting a consultation with a CLL specialist?

 

Christina Fisher:

You must.  You must seek out a consultation with a specialist.  It is up to you as a patient to seek one out and obtain that appointment.  No one is going to come to you and say, hey, maybe you should make an appointment or I’m going to give you a referral.  You need to make that appointment and see a specialist that you’re comfortable with.  And if your personality or maybe the information doesn’t quite deliver in a manner that you prefer, find another one.  There are many in the country now for CLL, and I was fortunate enough to be accepted into a program at OHSU where‑‑

 

Andrew Schorr:

Oregon Health & Science University.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

Okay.  So you’ve gone from having your eyes swollen and shut and a big lymph node on the side of your neck, and at one point I think even being weak and being in a wheelchair to doing well.

 

Christina Fisher:

Yes.

 

Andrew Schorr:

So what’s your outlook for the future?

 

Christina Fisher:

Well, I feel like I’ve been released from a cage recently, and that’s something that I’m considering, and so my husband says he knows I’m doing better when I nag more, and, believe me, I’ve been nagging.  So I’m feeling so much better just recently, and I feel like that I have hope for life.  I have hope for a future.  I have hope that there’s just a chronic condition or a cure.  I feel fantastic right now, and so I’m looking forward to a very active summer, definitely.

 

Andrew Schorr:

Good for you.  Christina Fisher, wish you the best, continued better health, and I’m glad you have the right team working with you now, and thanks for speaking up and telling others to speak up.

 

Christina Fisher:

Thank you, Andrew.

 

Andrew Schorr:

Okay.  Andrew Schorr, and you can see personal advocacy and knowledge can be the best medicine of all.

Deceived But Not Defeated

I never felt any symptoms. I mean, I was tired, but what young 20-something who had just started graduate school while maintaining a full time job wouldn’t be? It happened during a physical. A lump towards the top of my throat was felt by my doctor. “I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15%, a very very low chance,” he reassured me. “I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should had – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job. All of these thoughts raced through my mind. However, the support of my family and, luckily, not having any symptoms kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former, and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sunk. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to be a specific diet for approximately 3 weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite. I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature, and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years later from my diagnosis, and I have been deemed “cancer free,” no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy, and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I did/do, and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did. There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient, to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s) (patients with chronic conditions usually have multiple, which can be hard to keep track). There are solutions coming to the forefront, such as pill packs, patient portals, and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy, and ultimately, compassion for a patient’s story, to provide the best care and create better health outcomes.

Singing Through Cancer Helped Me Survive

I was not very curious about the nuances of singing and producing pitch during my younger adventures in a choir. A solid chorus member, I enjoyed the demands of music acquisition, the camaraderie, and the chance to conjure my inner diva, when appropriate.

My perspective changed when I heard the words “You have cancer.” That year, those four syllables cracked me and my beautiful, imperfect, 45-year-old life wide open and handed me the dramatic role no woman desires. I found myself memorizing not Latin and French lyrics, but malignancy’s bewildering status symbols: grade, stage and node, hormone reception and recurrence. I donned drafty hospital gowns instead of costumes or robes, and summoned the diva, not to perform, but to confront a relentless, faceless villain. When offers of support poured in, I learned “Yes“ and “Things will be OK” were the only lines I needed.

I completed my transformation, from ordinary woman to infiltrating breast carcinoma patient to survivor, in just eight months. During the harrowing passages, I felt scared, boxed-in, smaller than before. Carrying the role of cancer patient sometimes left me gasping and utterly out of tune. And I’m one of the lucky ones.

Facing a life-disrupting disease didn’t give me special gifts, but it reminded me that strength and healing come from unexpected places, and it deepened my appreciation for the restorative powers of singing and music. I’ve never regretted the nights I showed up to sing when I was too weary to speak or even stand.

– – –

Singing in perfect pitch tests professionals and amateurs alike. It’s an acoustical feat of mathematics, physics and human anatomy. We climb musical scales powered by our vibrating vocal folds. The higher we go, the faster the vibrations. Those frequencies are measurable, but how our ear perceives pitch is subjective and more complex as we approach our voice’s upper limits. It’s tough for one accomplished soloist to stay the course. That challenge expands exponentially when many differently gifted vocalists attempt the crossing together.

Diabolical phrasing, chords that don’t resolve, inadequate breath control, nerves and the winter’s chill lead us astray. Sorrow enters our rehearsal spaces, announcing itself with drooping shoulders and sagging tones.

When the choir drifts off-key, directors “tune” our voices with exercises to improve pitch accuracy. We might vocalize in sections over a major chord or focus on creating an elusive, well-tuned third and then, at the director’s signal, migrate to a lower one. Interesting things occur as we’re sustaining our notes. Vibrations collide, blanketing us in an exhilarating cloud of sound that helps us recognize if we’re hovering under or over so we can recalibrate. If our tone flattens, we brighten it together, modulating up in barely-perceptible increments until all singers land on a near-perfect third or triad.

The instant when 10 or 20 choir members lock into magical harmony to sing as one voice defies description, like a ballerina’s floating, a perpetual string of fouettes. It isn’t buzz, scream, or reverb, but when an ensemble gets it right, the air celebrates with us.

– – –

I was hitting my mid-life stride when those four syllables knocked the wind out of me. I had a loving husband, amazing sons, good friends, interesting work, and meaningful volunteer pursuits. I’d even forged a delicate peace with painful childhood circumstances that bled into adulthood, and I was envisioning my next chapter.

In the lead-up to Thanksgiving, I came under bombardment. Dad and I were saying reluctant goodbyes. We knew he was running out of options and precious time. Many afternoons, I held his hand, saw his battered body succumb to cancer’s onslaught. I returned home at dusk to quietly plot my own body’s defense amid an escalating campaign of biopsy and MRI results and five-year survival projections. I had just reassured Bob and our kids (and myself) that, after my treatment, things would be okay when we were called to gather at Dad’s hospice.

On his final night, Dad’s chest labored with every subsequent breath until we watched him draw in and hold onto his most important one. The air patiently awaited permission, then transported my father to his next home. Dad died of cancer four days before my surgery; I attended his funeral, in a haze, five days after.

Amid the pandemonium, I refused to abandon the singing and ballet that anchored me in other storms, but my positive outlook didn’t spare me the progressive toll of chemotherapy, radiation and estrogen-destroying medications. Cellular warfare punished my stamina, spirit, and untrained, lyric soprano. Amid brain fog, hobbling myalgia, crushing fatigue and disappearing hair, my suffering soprano seemed like cancer piling on. What was clear and steady became temperamental and prone to croaking or evaporating mid-larynx. The diva went into hiding.

I smiled when people said, “You’re so strong.” Making peace with vulnerability was harder; it required a system override or an existential re-tuning.

I noticed the subtle, curative powers of music-making, how it awakens emotions and gently moves us into community. I soaked up the beauty of silences and admired how we stagger breathing in torturous passages to support the sound and one another and how a lush, alto line sends descants floating to wondrous heights.

There were some bruising remarks and sour notes. One regretful solo I should have refused, accomplished with sleep-inducing quantities of antihistamines. Yet I mostly recall how gracefully my musical community tuned me. Changing seats to accommodate scary side effects. Steadying arms when emotions overtook me. The kind diva passing me missing choreography, instead of scowling, when I accidentally trampled on her solo.

Friends raising a glorious roar when I could barely chirp, reminding me we belong to something mightier than any hardship or disease.

Singing through cancer punched up my playlists for the blessedly ordinary and terrible days and taught me to treasure songs that speak directly to our broken places. I count on the haunting, intersecting supplications of Renaissance master Victoria and Bach and Coldplay to calm the MRI chamber’s mayhem. It’s Prince, Bowie and Jackson Browne inviting me to dance in my kitchen. I memorized those melodies that carried hope and faith back to me when they went missing for a spell.

– – –

I’m still okay. Gratefully, still a lucky one. I reclaimed my diva and, shortly after our move to Connecticut, joined a lovely women’s chorale. I’m discovering anew how routine vocalizations can realign not only discordant notes, but our anxious minds. At a recent rehearsal, I could almost see all our invisible burdens yielding to the room’s overtones, then evaporating in the swirling, ephemeral soundscape.

I believe the best choirs accept our offerings of exacting diction, buttery timbre and angelic tones, along with our heartaches, to grow something of honesty, tenderness and majesty. Sing long enough and you’ll one day find yourself harmonizing with and holding up someone who’s making her way out of a dark or lonely valley.

The fragile heart and unpredictable, faithful voice rising with the descant (and missing an entrance or two) were once my own. People said I inspired them by sharing my voice while my body was so visibility under siege. It was uncomfortable, almost as unnerving as cancer itself.

Looking back, I think that was the point.

Patient Profile: A Follow Up with Meredith Cronin

Meredith Cronin

Breast Cancer

You may remember Meredith Cronin from our three-part breast cancer series in October. She shared her experience of being diagnosed with and treated for breast cancer seven years ago at the age of 37. She had three young children at the time and remembered being grateful that she was so busy with her family that she didn’t have time to become weighed down by her illness. “Attitude is everything,” she told us. Meredith wanted as much time as possible with her family so she did everything she could to combat the cancer and make sure it wouldn’t come back. She had a double mastectomy, she did chemotherapy and radiation, and she got a second opinion from a research hospital. When her treatments wrapped up, her doctors told her they didn’t expect her back. She was cancer free.

Coincidentally, the same week Meredith shared her story, she had surgery to investigate a lump she’d found under her arm. The lump was malignant. Her cancer came back. Needless to say, her doctors were all very surprised. The lump was in a tricky area near blood vessels, nerves, and scar tissue. She had a second surgery to make sure the margins were clean and then she began, what will ultimately be, 30 radiation treatments. The radiation is precautionary and preventive. “The doctor says I’m cancer free at this time,” she says, but Meredith and her doctors want to be sure the cancer is gone for good this time and doesn’t come back again. She goes for treatment every day and twice on Fridays so she can have it finished by the end of this month.

Despite the intense radiation, Meredith says she is feeling good. She doesn’t have a lot of fatigue and her skin is holding up. Her two youngest children have even been able to come to treatments with her. She says it helps them to see that she’s okay so they feel better about what’s going on. Her recurrence was pretty upsetting for all of them, but they’ve been able to keep a positive perspective. She says her husband summed it up pretty well when he said, “The short term sucks, but the long term looks good.” And, so far the kids all seem to be focusing on the long term and supporting their mom. “They like to wear their pink,” says Meredith.

Much like her first round with cancer, Meredith is being thorough and aggressive in her treatments. In addition to radiation, she is eating well and working out every day. This week, she is going to a research hospital for a second opinion on whether or not she should add more therapies to her current treatment. “The second opinion is more about doing chemo or if they have another suggestion,” says Meredith. Her doctors now aren’t recommending chemotherapy due to the risks associated with it. Long term effects of chemotherapy can include lung, heart and kidney problems as well as the risk of developing a second cancer.

Meredith has also started taking injections to force menopause as another preventive step. Once in menopause, she’s able to take a more effective medication than the one she has been taking. She says she doesn’t know what to expect from menopause, but she’s willing to do whatever she has to in order to keep the cancer from coming back. She’ll do the injections until maybe spring 2019 when she’ll have a hysterectomy and possibly an oophorectomy, where both ovaries are removed. That’s always been part of her preventive plan someday. “I’ve been putting it off for years,” she says. “I’m kind of kicking myself now.”

Vigilance about staying on top of your health is the message that Meredith most wants to share. Even when you’ve been told you’re cancer free, you have to check out every lump, every change that comes along. “Stay on top of it. Keep following up with it,” she says. Meredith says she’s learned that even though her cancer is gone, she still has a lot to do to make sure it stays that way. She’s cancer free, but not necessarily free from cancer. “I’m just going to keep doing what needs to be done,” she says.

You can find the three part series on breast cancer featuring Meredith and five other women on the Patient Empowerment Network blogPart IPart II, and Part III.

Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Patient Profiles: Breast Cancer Part III

This is the last installment in our three-part series profiling breast cancer survivors. In Part II, the women gave insight into the importance of their mental health and their own attitude as critical components of care. They also shared some of the ways in which they coped with cancer. Today, the women talk about the possibility of recurrence. So, we pick up with the final stage of Shannon’s preventive measures. Based on her history, she knows her cancer can come back, but she wanted to do everything she could to prevent it.

Shannon’s treatment didn’t stop at reconstruction. She opted to have an oophorectomy, which meant she had her ovaries and fallopian tubes removed. Remember, her moms’s cancer had returned and been terminal, so Shannon wanted to take every preventive measure she could. “My fear and my worry is that hers came back 16 years later and she died at 65. If the same thing happened to me, I would die before I’m 60,” says Shannon. Her breast cancer diagnosis meant she was at higher risk for female cancers and she wanted to do whatever she could to have as much time as she could. “I’m relatively young,” she says. “I wanted to give myself as long as I could.” In order to have the procedure, Shannon had to take medication that would put her into menopause and the side effects that came with menopause affect her quality of life, so she says she goes back and forth on whether or not she would do the oophorectomy, if she had it to do all over again.

Although she did have melanoma a couple of years ago, Tina has been 27 years without recurrence of breast cancer. “I didn’t really feel safe until five years out,” she says, but adds that you never really know if it’s coming back, and that you should always be vigilant about checking for lumps. There is a risk of late recurrence, i.e. breast cancer that comes back more than five years after diagnosis and treatment, and it is more likely if it was later stage when first diagnosed, and if the cancer was HR positive.

Like Tina, Betty also had a second cancer. Her colon cancer was discovered in 2009 and her doctor estimated that it had been growing for ten years, but because of where it was growing in relation to the colon wall, the tumor was able to be cleanly removed and no treatment was required. Because her breast cancer was ductal and not in the tissue, and her doctor was able to get very clean margins, Betty says she doesn’t worry about it returning. “I’m more afraid of the colon cancer returning,” she says.

Diana has been nine years without recurrence, but she says, “My guard is always up.” Maybe it’s because her mother and grandmother both had breast cancer, and, despite being BRCA negative, she believes her cancer is hereditary. Shannon feels the same way and says she believes 100 percent that her cancer is genetic. The genetic testing available is limited compared to the number of genes in the human body so, Shannon says, “There’s a long way to go.” And, while it’s early for Shannon to think about recurrence, she can’t help but consider it. “I don’t want to spend every day thinking about cancer. I don’t want that to be my life,” she says, “but it is in the back of my head.” Not knowing how the cancer might come back makes Shannon especially uneasy because she doesn’t have a plan for it.

When Meredith finished treatment, her doctor said he didn’t expect to see her back for recurrence. The odds were in her favor that she would remain cancer free. Meredith, like Betty, says she got the best cancer to get if you’re going to get cancer, but unlike the other ladies, Meredith was not expecting to get cancer. She didn’t have the same family history. Her only red flag was that she had an aunt that had ovarian cancer and she thought maybe her grandmother had breast cancer when she was 90. Meredith was young, she had three small children, and breast cancer was not on her mind. In fact, she was so sure she didn’t have it, that she took her 18-month-old daughter with her when she got the results from her lumpectomy. But, Meredith, who is also BRCA negative, did have cancer, and while her cancer was ductal, it was bigger than it should have been, and there was also a spot on her other breast that needed to be watched. Wanting to be proactive Meredith opted for a double mastectomy with reconstruction. She also had chemotherapy, because the cancer was found in a lymph node, and she lost all her hair. While she possibly could have gone without radiation, she opted for it. Again, she wanted to be aggressive and as proactive in her treatment as possible. She wanted to make sure her cancer was gone.

About a month ago, Meredith found another lump under her arm. She had a scan that was all clear except for the spot where the lump is located. She and her doctors are hoping it is just scar tissue, but she’ll have a lumpectomy this week and then she’ll wait for the biopsy results, which she is guessing will take several days. “The waiting is the worst,” she says. Liz, as a caregiver, felt the same way about waiting, “The worst part of all of it was waiting for the results.”

Tina, who also had young children at diagnosis, recalls that she just wanted to live long enough to raise her children. She says she found it difficult to accept the idea that she might die before her kids were grown. That thought is clearly on Meredith’s mind as well. “I remember saying, ‘Just give me five more years,’ and now it’s been seven years, and I’m saying, ‘Just give me seven more years,’ but no amount of time is enough,” she says. You can hear in her voice that she’s trying to be brave, and she says, “Hopefully, it will all be fine,” but it’s scary because, even though Meredith got the best cancer you can get if you’re going to get cancer, it is still cancer.

Anxious to hear Meredith’s results? We are, too, and as soon as she gets her results, she’s promised to follow up with us. We’re hoping for good news, and we will let you know as soon as we can.


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Patient Profiles: Breast Cancer Part II

In the first part of of this three-part series, you were introduced to Betty, her daughter, Liz, Shannon, Tina, and Diana. You learned that women who are diagnosed with breast cancer are not really all that surprised to get a diagnosis. They are often expecting it. Having breasts is a risk factor, and women have breasts. In today’s installment, you’ll meet Meredith. She wasn’t expecting to get breast cancer. But, before we meet her, we’ll pick up where we left off in part one: the matter of hair loss and chemotherapy.

Whether or not a survivor lost her hair during cancer treatment, it’s one of the first things she says about her experience. Shannon even lost her eyelashes and they never came back. She says she knows it’s a little thing, but it still bothers her. Betty, didn’t lose her hair. Like a growing number of women, she did not have to have chemotherapy. She says avoiding chemo made a huge difference in her experience. At the time, Betty was receiving treatment at a research hospital, and there was a test available to her that would determine how beneficial chemotherapy would be in treating her cancer. She was told that if she scored between a one and a 19, she would not need chemotherapy. Betty scored an 18. While she had to pay for the costly test out of pocket and wait for insurance to reimburse her, she says it was worth it. “It was so helpful,” she says. “Because of what chemo does to your body, you don’t want it unless you need it.” Side effects from chemotherapy can include anemia, diarrhea, fatigue, fertility issues, hair changes/loss, memory loss, neuropathy, menopause and menopausal symptoms, mouth and throat sores, nausea, vaginal dryness, vomiting, bone loss/osteoporosis, heart problems, and vision problems. The test Betty had is now being more widely used and, as you may have read on the Patient Empowerment Network blog in the June Notable News here, researchers have learned that 70 percent of women don’t need chemotherapy when they have the most common type of early-stage breast cancer, with low and moderate risk of recurrence. The test looks at cells from a tumor biopsy to determine what is known as a patient’s recurrence score. Patients are scored between zero and 100, with zero being the lowest risk of recurrence. Researchers now know that women who score less than 25 do not necessarily need chemotherapy.

Betty also did not need to have a mastectomy. She had a lumpectomy followed by intraoperative radiation therapy, a 30-minute procedure that involves surgically placing a ball of radiation in the spot where the tumor had been. The procedure meant that Betty only had to have a single radiation treatment, and it helps reduce the side effects of radiation. Betty was eligible for that form of radiation in part because of the size of her breasts. She says she told the doctor, “I’ve been lugging around these big things my entire life and they are finally paying off.”

The intraoperative radiation was another benefit of being at a research hospital. At the time of Betty’s treatment, the procedure wasn’t being widely used and wasn’t available through her local doctors. Receiving treatment at a research hospital also made a difference in Diana’s care. She recalls going in to her local doctor’s office for her test results, and no one in the office would make eye contact with her. Then, when the doctor came in to see her, he told her she had breast cancer, that he wanted to treat it right away, that he’d see her next Tuesday, and then he left the room. Diana says she was left there shaking. “He has a heart, but he didn’t show it,” says Diana, who then went to a research hospital for a second opinion. Her new doctor was much better, she says, and adds that the shoulder of his lab coat was always dirty from the smudge of make up left behind after his patients hugged him.

The importance of good doctors that you are comfortable with seemed to be one of the critical components of care to all the women.They all talked about how much they liked and appreciated their doctors. “A really good physician realizes psychological and spiritual care are just as important,” says Tina, who sought the services of a psychologist after her treatment. She was struggling with anxiety and depression and found that the counseling really helped her to work through her emotions about having cancer, which emphasizes another, perhaps the largest, critical component of care during treatment: emotional and mental support and health. Diana says she found support online and emphasized the importance of staying positive through treatment. “Count your positives,” she says. “That is the key.” Along the same line, Betty says, “The number one thing is attitude.” Actually, she and Liz say “attitude” in unison, and Betty adds, “I think attitude is a big piece of it.” Meredith Cronin who was diagnosed at age 37, says “Attitude is everything.” Meredith, who had three children under the age of six when she was diagnosed, says she understands how easily you could get depressed as a cancer patient. “I always say that I felt blessed that I was young and so busy that I didn’t have time to be depressed.”

Shannon, who was accused of being negative because of her detailed planning to get breast cancer before she actually had breast cancer, says she wasn’t negative; she was realistic and it was that take on it and her preparation and planning that helped her maintain emotional balance.“It didn’t affect me emotionally as much as I think it would have,” she says. Shannon coped through research and attention to details, and she describes her experience in the kind of detail that makes you think she’d just had it done yesterday rather than three years ago. Betty used a different method of coping and says she’s been able to let a lot of the experience go. “I don’t dwell in that place,” she says. She and Liz also found a lot of humor in the experience. The clickity-clack of someone’s shoes, Betty’s preoccupation with cutting out recipes from a magazine, or the ridiculousness of what must have been an excruciating procedure, were all fodder for coping. It’s not that Betty doesn’t take cancer seriously, but she was better able to cope with the diagnosis by finding humor in the situation. “We laughed through our tears,” she says. Liz says that early on in the experience, they imagined the worst possible scenario, which made handling what really happened more doable. The ways of coping with cancer are as varied and vast as are the treatment options.

Next time, in Part III, recurrence.


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Patient Profiles: Breast Cancer Part I

Female breast cancer awareness, with it’s pink ribbons, and Save the Ta-tas t-shirts, and fundraising 5Ks, sweeps into October each year with the same prevalence as pumpkins. No other cancer has managed to garner as much support, attention, or money. But, even without the pink campaigns, the prevalence of breast cancer is not a secret. An estimated one in eight women is diagnosed in our country, and there are about 1.38 million new cases worldwide each year. You’d be hard-pressed to find someone who doesn’t know a breast cancer survivor. This month, in a three-part series, Patient Empowerment Network is taking a closer look at five survivor stories and one caregiver. These women represent the more than 3.1 million women in the United States who have a history of breast cancer. In today’s installment, you’ll be introduced to five of the six women, and you’ll learn that getting a breast cancer diagnosis wasn’t really a surprise to any of them.

Breast cancer survivors are interlaced through all of our lives, and there is something very endearing about how openly willing they are to share their stories. They freely talk about their diagnosis and treatment, but more than that, they talk about their darkest moments alone in the hospital, or their need for counseling after treatment. They discuss the lengths they will go to endure invasive treatment that may prolong their lives, and they share their prayers to live long enough to see their children grown. They are so deeply candid that it’s as if they are inviting you to be a guest for the day in their exclusive club.

Only it’s a club you don’t really want to be a part of, says Betty Abbott, who was diagnosed five years ago. She was 72 at the time, and her cancer was ductal and non-invasive. She says it’s the kind you want to get if you’re going to get it. But, is there really a kind of cancer any woman wants to get? While the death rates for breast cancer have been decreasing since 1989 thanks to increased awareness, early detection, and advances in treatment, breast cancer is still the second leading cause of cancer deaths in women in the United States, second only to lung cancer. In 2018, approximately 40,920 women are expected to die from breast cancer.

Cancer is cancer, no matter the stage, the type, or the form. “That’s the thing about breast cancer…it’s still cancer,” says Liz Abbott. She’s Betty’s daughter. The two are very close, and Liz was with Betty every step of the way through diagnosis and treatment. Liz hasn’t had breast cancer…yet, but she fully expects to get it. She knows the statistics. Even though less than 15 percent of people who get diagnosed with breast cancer have a relative diagnosed with it, a woman’s chance of getting breast cancer nearly doubles if a first degree relative (a mother, sister, daughter) has had it. So many women get breast cancer, so many families of women, that for some women it’s no longer if they will get it, It’s when. Since her mom’s diagnosis, “our new realities are very different,” says Liz, who can’t help but worry if breast cancer is her own daughter’s path as well.

It was the path for Shannon Knudsen, who was diagnosed three years ago, when she was 43. Like Liz, Shannon was very close with her mother and walked with her through diagnosis and treatment of breast cancer. Shannon’s grandmother and great grandmother had breast cancer as well. So, for Shannon, breast cancer was never an if. “I never thought I wasn’t going to get it,” she says. “It was always a matter of when.” So Shannon wasn’t surprised by the diagnosis, but she says she was angry. You see, while she was prepared and had a plan, cancer still managed to throw her what she calls “an interesting little twist”.

Since she watched what her mom went through, being diagnosed at 49 with recurrence as leukemia 16 years later that was ultimately terminal, Shannon was diligent about staying on top of cancer research, and as soon as she learned that genetic testing was available, she looked into having it done. She was absolutely positive that her family carried the BRCA gene mutation. The BRCA1 and BRCA2 genes produce proteins that help repair damaged DNA cells. When either of the genes has a mutation and the genes don’t produce the protein or function correctly, DNA cells are more likely to develop changes that can lead to cancer. There are specific mutations of the genes that increase the risk of female breast and ovarian cancers. People who have inherited the mutations, which can come from the mother or the father, are more likely to develop breast and ovarian cancers at younger ages.

As soon as Shannon’s insurance covered the testing, she had it done. Fully expecting a positive result, Shannon was prepared to have a preemptive double mastectomy with reconstruction. But, Shannon’s results were negative. She doesn’t carry the BRCA 1 or BRCA 2 mutations.“I was shocked,” says Shannon, and she feels like the results gave her a little false security. That’s where the anger came in, because in August 2015, when her mammogram and subsequent 3D testing showed a black and jagged spot of concern, she knew that meant she was bound for chemotherapy, and that was something she had always planned to avoid by having preventive surgery. “I was 100 percent prepared to do that, and it didn’t work out that way,” says Shannon. Cancer, as it often does, had other plans.

Cancer had other plans for Tina Donahue as well. “It was a really, really difficult time in our lives,” says Tina of her diagnosis in 1991. It’s not that Tina wasn’t expecting to get a diagnosis at some point. She also had a family history of the disease, her maternal aunt died from breast cancer, and Tina was a nurse so she had a keen understanding of her risk, but when she was diagnosed at 44, she had just been promoted to an executive vice president position at work, and she had three young sons. She was also in school to get her MBA. Cancer was not part of her plan, and she thought she was going to have to quit school when she was diagnosed. However, thanks to the support of the other women in her study group, Tina didn’t have to quit school. She says the women rallied around her, told her not to quit and helped her, encouraged her, and tutored her through.

When it came to treatment, Tina and Shannon, though diagnosed more than 20 years apart, had very similar methods. “I just wanted to hit it as aggressively as I could and give myself as much life as I could,” says Shannon. She told her surgical oncologist that hers would be the easiest consultation ever. She had done the research, she knew the risks, she knew exactly what treatment she wanted. Tina, who also wanted to treat her cancer aggressively says she told her doctors, “Give me everything you’ve got.” Both women had a double mastectomy and reconstruction with silicone implants. Tina says her implants lasted 23 years before she noticed they started getting folds in them, which was a sign that both implants, though contained, had burst, and she had to have them redone. Shannon’s implants are a newer technology called gummy bear implants and are designed so that they won’t burst. Tina says the silicone felt and looked more natural, and Shannon says that was important to her as well. Tina also says that if she hadn’t been a nurse who had seen a lot of recurrence in women who had had a single mastectomy, and if she hadn’t been witness to her aunt’s experience, she may not have opted for the double mastectomy.

Diana Geiser did not opt for the double mastectomy, but now says she wishes she had. Diagnosed at age 50, Diana says she struggled with the decision at the time and remembers feeling like she wanted to keep part of herself. “Now I wish I’d done both,” she says explaining that one of the draw backs is that her natural breast gets bigger or smaller with weight fluctuations, but her reconstructed breast does not.

Regardless, all three women had four rounds of chemotherapy. They all had clear lymph nodes, and were hormone-receptor-negative (HR negative), meaning that it was likely that hormonal therapies wouldn’t work for them. Tina, still wanting to treat her cancer aggressively, says she wanted to kill everything and had low dose chemotherapy. She lost some of her hair, but not all of it. For Shannon and Diana, the pathology reports came back showing their tumors were aggressive, Shannon’s highly so, making chemotherapy necessary. They both lost all of their hair, which is something that must be incredibly pertinent to breast cancer survivors, because whether they did or they didn’t lose it, they all tell you about their hair.

Next time, in Part II, meet Meredith.

 


Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Patient and Advocate Profile: Hannah and Carrie Ostrea

Before she was a year old, Hannah Ostrea was diagnosed with a rare genetic metabolic disorder, Neuronopathic Gaucher’s Disease type 2 or type 3. Hannah’s mom, Carrie, says the doctors told her to take Hannah home and to love her, but that she wouldn’t make it past her first birthday. “We became parents on a mission,” says Carrie who immediately began researching Gaucher’s and related diseases. Soon she began contacting researchers and sending samples of Hanna’s cells to them in the United States, Canada and Israel in hope that someone might find some way to help Hannah. Carries learn that very little was being done to understand the devastating effects of Gaucher’s and that the researchers who were dedicated to studying the disease were remarkably under-funded. Carrie also learned that there are a lot of people and a lot of children with rare diseases, but that there are not a lot of answers and not a lot of funding for any of them. She also knew, first hand, that there weren’t a lot of resources available to families with children with rare diseases. Care saw a need and she started taking the steps to fill it.

Her first step was creating the Little Miss Hannah Foundation (LMHF), a non disease-specific, Las Vegas-based, non-profit organization for children diagnosed with rare diseases, children with undiagnosed medical complexities, and children in hospice or palliative care. “All these diseases, they all suck. It doesn’t matter what the disease is.” says Carrie. LMHF provides resources for local children and their families and they also emphasize the importance of supporting the other children in the family. “We want the siblings to know they are important too,” says Carrie who adds that Hannah’s illness greatly impacted the lives of her two other children. “There should always be resources for a family like ours,” says Carrie who describes her experience as the parent of a child with a rare disease as isolating because of the lack of awareness, understanding and resources. The medical community doesn’t have answers and the insurance companies won’t always cover expenses because they don’t recognize or have never heard of the diseases. Through LMHF, Carrie is committed to providing families with financial assistance and the tools and support they need. It is LMHF’s mission to empower patients and their families and it is Carrie’s passion.

In addition to running LMHF, Carrie spent five years working with Global Genes, a rare disease patient advocacy group, and she is now using her business and marketing background as a consultant for organizations like LMHF. She says there are over 7,000 rare diseases and half of those have no support group. The ones that do are often started by patients or parents of patients, like Carrie, that are just trying to save a life. Often times they have little to no knowledge or experience about how to run an organization. “I educate them on where they need to go,” says Carrie who calls herself the big sister of rare disease groups. She mainly advises the groups on the business end of their organizations. As is true for many advocacy groups, funding and awareness are the greatest needs for rare disease organizations and Carrie says social media has helped tremendously. She says she has noticed a strengthening in patient groups and advocacy in the past five years. “Social media is a godsend to rare disease. It has given advocates a platform,” she says. “It just takes one person who is willing to put themselves out there to start a chain.”

Carrie continues to take steps to fill the need she saw when Hannah was diagnosed. She says there is a lot more work to be done, but that she will continue to share her knowledge to help others in whatever way she can. “We are very pay-it-forward in the rare disease community,” says Carrie. “There’s no time not to be.”

Hannah was three when she died. She spent the last seven weeks of her life at home surrounded by her family and in hospice care. She died in Carrie’s arms. The Little Miss Hannah Foundation is her legacy and so much more. “It’s our way of still parenting her,” says Carrie. “We just do it a little differently.”

To learn more about Hannah’s story and the Little Miss Hannah Foundation visit littlemisshannah.org.

MPN Patient Story: Ruth Gerwin

My journey began in 1999 when I was diagnosed with Essential Thrombocythemia (ET). All I took was a baby aspirin, even then they [platelets] soared to over 1 million.

In November 2004, I had a bad cold and had this aching on my left side. It was discovered my spleen was enlarged and I had a bone marrow biopsy. I was at that time diagnosed with Myelofibrosis (MF). I went to see Dr. Richard Silver in New York and he put me on Interferon. I saw him for 5 years and then transferred to Cleveland Clinic as my insurance company was making it harder and harder for Dr. Silver to be paid. There I was under the very capable care of  Dr. Ramon Tui. It was under his care that I did a trial for Jakafi. It only helped the spleen size for a couple of months, but it has kept some of the other side effects of the disease at bay. I still take 20 mg. twice daily. Also, in 2014 I had a double mastectomy.

In the spring of 2017, I was so horribly uncomfortable because by this time I looked 9 months pregnant with my spleen. I also had swollen legs and feet. I could hardly walk. I made a decision at that time to radiate the spleen to give me some relief. I was supposed to receive 10 treatments, but was stopped at 7 because my blood counts bottomed out. Hmg 6.0, Pl 5, WBC 0.8. I started with transfusions twice weekly of one platelet and two blood. I did this for several weeks and developed a horrible headache. I stopped the transfusions and my Dr. said to go home and call Hospice. He thought I had 2 weeks to 2 months to live. I was really sick, but as my spleen began to recover, my counts went up. By the fall of 2017, I was basically back to normal with the blood counts and, of course, out of Hospice. My family think I’m a miracle. But, the spleen, by December 2017 was becoming very uncomfortable again and I started radiation again January, 2018. This time I had 4 treatments and had to stop because of my blood dropping.

It has been suggested to me by two doctors to have my spleen removed and have a bone marrow transplant. But, I have read about this procedure and I know I wouldn’t survive as I am very sensitive to most of the medications they would have to give me. My current hematologist is looking for a trial I can do, but my bone marrow is nothing but fatty tissue. I have nothing there…not even fibrosis. I keep telling them my spleen is doing it all, but they won’t believe me. With no bone marrow tissue, I can’t do a trial. So, I don’t know what they are going to do with me. Anyone else have this problem? I’d love to hear what you are doing.

I know the Lord has a good plan for me and I just have to wait and see what it is. He is the “great physician”!  I’m just not real patient. I haven’t felt really well for a long time.

Living With Two Cancers

My story with cancer started in 2008 when I was diagnosed with Multiple Myeloma. I was fortunate to have a primary care physician who noted abnormalities in routine blood work and sent me to a hematologist oncologist. At the time of diagnosis I was at the MGUS stage, precursor to active Myeloma, and was monitored every 6 weeks. During that time I switched to a Myeloma specialist in the health system where I was employed as a PT. I also hit the internet to learn more about this cancer that I had never heard of. BIG MISTAKE! The published survival rates at the time were 2 years. I wasn’t ready to hear that so I stopped reading.

Over the next year I pretty much refused to own the fact that I had a cancer diagnosis. I wasn’t being treated, might never be treated and felt ok except for fatigue. That all came to a screeching halt one day when I had extreme pain in my left arm and suddenly couldn’t lift my arm. I went to the ER and was diagnosed with a pathological fracture of my left humerus, upper arm. I saw my specialist the next day and began treatment immediately since I now officially had active Myeloma.

I responded well to treatment and went on to have an autologous stem cell transplant (ASCT) 9 months later. This led to a complete response and almost 3 years with no treatment until I relapsed. I began treatment again with the same drugs that had worked so well before and again had a good response. I continued with this for almost 4 more years until one day in October 2016 all hell broke loose. I was in my oncologist’s office for a regular appointment waiting for him to come into the examining room when I crashed. I was rushed across the street to the ER where I was admitted. A few days later, after many tests, I was diagnosed with Acute Lymphoblastic Leukemia, ALL.

I spent the next month in the hospital receiving induction chemotherapy for the ALL and the next 6 months for consolidation therapy. During those months of treatment for the ALL I relapsed again for the Myeloma. After I completed my ALL treatment, that’s now in remission, and recovered from that chemo, I began treatment with one of the monoclonal antibodies for the Myeloma. Now, 8 months later, I feel about the best I have in years and my blood levels are all in the normal range.

Although I’ve gone through a lot, especially since being diagnosed with the ALL, I continue to enjoy and live my life. I worked 6 more years after my diagnosis with Myeloma. I specialized in treating people with cancer as a PT. My cancer diagnosis brought me closer to my patients since they knew that I understood what they were going through. I continued to travel to Europe to teach, attend conferences and for pleasure. After my retirement I  have also been volunteering for the American Cancer Society and been very active as a board member and program chair of my local Myeloma support group.

Encouraging others who have been diagnosed with cancer has been a mission of mine for many years. Now, as a person with two blood cancers, I find that that helps others, but also me. With the treatments that are now available to us, we often can live fairly normal and long lives. Who would have thought that I would still be here when I was diagnosed 10 years ago? I attribute that to the wonderful medical care I have received from my oncologist and his team, the research that has led to more effective treatments and to the support of my friends and family. But, most of all, is my own self education about my cancers and my relationship with my oncologist. I believe that being an active partner in my care has been extremely important. I look forward to continuing to enjoy those things in life that are important to me.

Nancy Stewart
Multiple Myeloma 2008
Acute Lymphoblastic Leukemia 2016

Introducing Claire Snyman: An Empowered Patient

“Change is the only constant” rings true in my life.

In 2010, I was diagnosed with a rare non-malignant brain tumor after the onset of vertigo and migraines. My son was only four at the time. During my patient journey, I had differing opinions and changes in treatment from the standard of care and realized a few important things. How critical it was to partner with my medical team, how important it was to be active in my health care and be my own advocate and how important it was to keep asking and get a second (or third) opinion if needed.

I started keeping track of all my medical records, educated myself on my condition so I could have informed discussions with my medical team, made a list of questions before each appointment and started to manage my medications and appointments – it was like a full time job!

In 2012, I became acutely ill with vertigo and migraines. I knew something was wrong even after the specialists and the ER doctor sent me home. Because I was active in my health care and educated about my condition, I kept asking questions. It was finally confirmed that my brain tumor had doubled in size. My brain was swollen and I needed brain surgery to survive. I am forever grateful that my husband and I kept on asking questions – it saved my life.

This experience highlighted the importance to me of being your own advocate, putting your health in your own hands and not being a passive participant in your health care. It’s also important to connect, communicate and collaborate with your medical team – in the interests of a better outcome.

After my recovery, I looked for various ways to use my patient journey constructively.

– I co-authored a collaborative study between patients and neurosurgeons at Johns Hopkins University to help increase collaboration between patients and health care teams and get more information in the public domain.

–  I am passionate about inspiring people to put their health in their own hands, having personally seen the impact it can make to a person’s life.  I developed The TEAM Approach for Empowering patients  (Track, Educate, Ask, Manage) – a simple and easy-to-remember tool to help individual’s transition to being an active participant in their health care.

I recently spoke at TEDxStanleyPark 2018 on “Your health is in your hands” and how it might save your life – hoping this message will activate others to become proactive in their health care.

I’m a firm believer than when something in life is no longer an option, when a door closes, another door opens. It may be different to what you expected, but if you are open to looking for it – you will find it. That is definitely true for this chapter in my life!

Clinical Trial Helps Lung Cancer Patient Live Active Life

Editor’s Note: This blog originally appeared on the American Lung Association’s Blog. You can view it here.


Donna Fernandez’s father died of adenocarcinoma at the age of 49, just six months after he was diagnosed, so when she learned she had the same disease, she knew exactly what it meant.

“They told my husband that I would live for four months,” she recalled.

Adenocarcinoma is a form of non-small cell lung cancer often found in the outer area of the lungs and makes up about 47% of lung cancer cases, and usually grows and spreads to other parts of the body more slowly than small cell lung cancer does. It develops in the cells of the outer layers of lung tissue, which line the cavities and surfaces of the body and form glands.

Donna was put on traditional chemotherapy and the cancer tumors did shrink, but the moment she stopped chemotherapy, they came back. “I was most worried about my dogs,” Donna said. “They can be pretty evil, and no one is going to love these little devils the way that I do.”

Like many patients, Donna, who worked through her treatment, had a tough time with chemotherapy. If she had treatment on Thursday, she would feel fine until the steroids from the treatment wore off by the weekend.

“I’d be so nauseated that I could not bring myself to drink anything,” she remembered, “I wouldn’t be able to walk from the couch to the refrigerator.”

During chemotherapy in 2013, Donna was approached with the opportunity to join a clinical trial, and it changed her life.

“I had no idea that it would help me,” she said. “I thought that I was helping future generations.”

Still an active participant in her clinical trial for treatments, Donna checks in every two weeks for an infusion and extensive blood tests. With the personal care administered from her healthcare team, to the tailored medical regimen, down to the feeling of being among family when she visits the Cancer Center at University of Texas Southwestern, Donna admits that she went from surviving to thriving.

“I can’t say enough about the ramifications [of the clinical trial],” she said. “I’m living proof. I’m not just alive, I’m living.”

Donna and her dogs travel often as they participate in dog agility competitions throughout the country. They went to Tennessee last year, and Donna is now preparing for a trip to Missouri, all thanks to the tremendous treatment received as a result of a clinical trial.

“I’m living my life and that’s so significant,” she said. “Just a few year back, I probably would not have made it.”

Donna’s story is proof that clinical trials are a valid treatment option and should be considered as an option throughout treatment.

Negotiating Cancer: Tips From One Who’s Done It

Editor’s Note: This blog was written by Stefanie Joho, an advocate, speaker, and colon cancer survivor, for The Washington Post. You can see the original blog here.


At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure me, my oncologist sent me home to die. When I was first diagnosed with colon cancer in 2013, I’d never even heard the word immunotherapy. I didn’t know that my doctors wouldn’t have all the answers. I thought clinical trials were last-ditch efforts rather than treatments that save countless lives. I didn’t know that a treatment geared to fighting my specific type of cancer and the genetic components of my tumor would go on to potentially offer tens of thousands of patients a revolutionary new path to surviving cancer in 2017.

Because I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the critical things that I have learned in what is now a new era in cancer care. Because a disease that should have killed me instead launched my career in patient advocacy.

[‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope]

First and foremost, it is important to remember that every cancer is unique. Your journey will be different from mine. Your cancer is yours and yours alone. So think of the following points as “road signs.” They’re ones that I wish someone had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to potentially help shape your thinking as you become an active participant in saving your life. More than anything, I hope it prompts you to question the presumption of cancer care for nearly a century.

1. The more we know, the more we can fight for our lives. 

We look to doctors in their white coats to be the experts — partly because, in a moment of such despair, we want to be able to look to someone to just give us the answers. But you should know that you will not find that person in anyone but yourself.

In the beginning of my cancer journey, I felt intimidated by my doctors and made several decisions that I now regret. I walked into appointments and agreed to everything instantaneously, without even considering a second opinion. As my cancer kept coming back and the treatments kept failing, I decided that the only chance I had to make it out alive would be to become an active participant on my journey. I would have to educate myself. I scoured the Internet. I became an “expert” not only in my specific disease, but also in the current cancer landscape.

I’m in no way encouraging you to become your own doctor and understand all the science. And I’m certainly not encouraging you to take everything you read on the Internet as fact. But in 2017, with the amount of accessibility to information, I’m encouraging you to seek it out. Never take anything at face value or trust blindly. Make informed decisions, not decisions based on fear. Walk into appointments with your doctors as an equal, not as a passive bystander. Being an informed cancer patient today is a full-time job. As with any job, that means learning new skill sets and finding the resources needed to succeed.

2. Asking questions is not making trouble. 

You will often be made to feel that being a “good patient” means not asking questions. But do not be afraid to speak up. Your life quite literally depends on it. Come into every appointment with a prepared list. If possible, bring someone with you who can take notes. If you are confused about something, ask. If you think of it later, write it down. Remember: You’re the one whose needs are paramount. You’re the one who is fighting for your life. Make every thought, concern and feeling heard. If it isn’t received the first time, say it as many times as necessary.

If you begin to develop a symptom from a treatment side effect or from the cancer itself, understand that it is the system’s job to help you get relief. If your doctors aren’t taking you seriously, do not believe their judgment over yours. And if you feel that your physician doesn’t understand or listen to you, then perhaps it’s time to seek one out who will. In my opinion, an individual who does not have empathy is not a physician.

3. No two cancers are the same. Become an expert in YOUR cancer. 

No two cancers are the same. Increasingly, knowledge of such individual variation is being shown to lead to more effective treatments. Ask your physicians and understand every type of genetic testing available to you. The more granular you can get about the specifics of your disease, the more you will maximize your chances of identifying the best possible treatment for your “personal” tumor. (Discovering the genetic biomarker of my cancer saved my life.) Continue to expand your resources so that you can be an expert in your own cancer.

4. Take note of EVERY potential side effect. Report everything. 

The incredible advances in cancer treatments have created a new set of challenges for clinicians, especially in how to identify the side effects. Given that these are new treatments, your doctors are not as practiced with them as they are with chemotherapy and radiation.

For example, immunotherapy is entirely different from traditional treatment. The former utilizes the patient’s own immune system, whereas the latter aims to attack only the cancer cells. Early recognition and proper management of side effects can make the difference between life and death.

Don’t hold back a single concern from your doctor and care team. Even if you think it sounds minuscule or irrelevant, your oncologist needs to know everything to best care for you. Listen to your body. Observe and report any changes.

5. Clinical trials are not a last-resort option.

The lines of treatment are rapidly changing, and, more often than not, getting access to cutting-edge treatments entails enrolling in a clinical trial. There’s an unfortunate misconception that clinical trials are reserved for those who have exhausted all other options. In reality, trials can actually offer access to the most individualized cancer treatment. And in fact, immunotherapy is more and more becoming the first line of treatment — and even being used before surgery to prevent relapses.

And just as individual patients can’t tackle their disease by themselves, we all ultimately must help one another by sharing and participating in clinical trials. Only 4 percent of cancer patients are currently enrolled in studies. Explore trials at cancer centers with a lot of experience in the type of therapy being tested. See if you have options outside of what has been standard of care for 70-plus years.

In the doctor-patient relationship, patients must understand that they are partners of science and as big a part of the cure as doctors. Without us, and our willingness to participate, medical advances would not exist. I will always feel a tremendous sense of pride for participating in a study that will save many thousands of people’s lives.

6. Cancer is not just a physical disease. 

It is critical throughout your journey to address the mental, emotional and spiritual aspects of this disease. Seek help, support and healing from other places, too. There are many schools of thought about why people become ill and what can be done to help them recover. It’s important to maintain your anchor in generally accepted medical principles, but don’t be afraid to look further up- and downstream to see if other currents of healing can add value for you and your care team.

As only one example among many, learning about nutrition made me feel as though I were actively fighting and doing something every single day to help my body heal.

7. Hope is a lifeline.

Don’t let anyone ever take that away from you. I believe in hope. Period. It saves lives. When your mind tells you that it’s over, the body has no reason to keep fighting. If you find yourself drifting in that direction, remember: “You haven’t failed the treatments; the treatments have failed you.”

Of course, doctors must tell their patients the difficult truth. But the specific words used to deliver such news matter. If your doctor is unable to provide you with hope or encouragement to keep fighting, find the hope and strength from within yourself and the loved ones around you.

8. None of this can be done alone. 

This might sound overwhelming. But with great power comes great responsibility. You are powerful, but you are not superhuman. Know your limits, and respect those limits.

Cancer is not a journey that you can navigate alone. The people and professionals with whom you surround yourself will alter the course of your journey. They will lend you strength when you feel you simply have nothing left to give.

If you physically or emotionally cannot actively advocate for yourself, then ask someone to be your advocate. When things were particularly bleak, my younger sister, Jess, often had to speak up for me. She knew what my doubts were, what my concerns were and what was important to me. She became my voice when I didn’t have one.

Create a health-care team that listens to you and cares about you and includes you in every aspect of your decision-making process.

Lastly, and so very importantly: Connect with others in the community. As much as your loved ones will do everything in their power to be there for you, they simply will not be able to understand the complexities of what you are grappling with on a daily basis. Making friends with other cancer patients (even through social media) enabled me to share the fears and anxieties that I was too ashamed or embarrassed to talk about with those who weren’t confronting their own mortality. I could speak openly about my side effects, the changes taking place in my body, my isolation. I could utter the words, “I’m ready to give up,” without the looming guilt associated with saying that to loved ones.

It certainly doesn’t have to be about only cancer, all of the time, but knowing that this kind of support exists is healing. It makes you feel understood.

Patient Profile: Jennifer Maxfield

Patient Profile

Jennifer Maxfield

Cervical Cancer

Jennifer Maxfield describes herself as a very private person. It’s hard for her to share her story. It’s emotional and it’s out of her comfort zone, but she’s starting to get a little more comfortable with it because she likes the idea of helping others. “That my story may be beneficial for someone else down the road is kind of cool for me,” she says.

If heeded, her story really is likely to help others. Hers is a cautionary tale, because her cancer is one that may have been preventable. She was diagnosed with cervical cancer in 2016. She’d gone to the doctor on her lunch break for a routine gynecological check up and during the exam Jennifer recalls the doctor saying, “Whoah. That’s strange.” Her doctor brought some colleagues in to confirm her hunch and Jennifer was immediately referred to a cancer specialist.

A runner and avid tennis player, Jennifer was young and healthy and never expected a cancer diagnosis, but, “I’m healthy,” she says, “not diligent.” You see, it had been a few years since Jennifer had been to see a doctor. It had been long enough that even her boss noticed and it was at her boss’s suggestion that she’d gone for her exam that day.

The good news was that it was a relatively slow-growing cancer and it was isolated. Jennifer’s doctor felt positive that after treatment there would be no recurrence. She wouldn’t need chemotherapy and radiation, but she would need a radical hysterectomy. “It was the absolute recommendation,” Jennifer says. There was another surgery option, but due to the size of her cancer, the success rate was compromised and the cancer was likely to return and then spread. Neither Jennifer nor her doctor wanted to take that risk. Her surgery was October 2016, three months after diagnosis.

But, here’s the thing, Jennifer was 33 at the time she was diagnosed. She hadn’t yet had children and a hysterectomy meant she would not be able to get pregnant. That’s where it gets emotional for her. “That was the scariest moment when all my family left, when the doctor left and I was there coping with this drastic change,” she says. “It was a high price to pay.”

Jennifer doesn’t want anyone else to have to pay that price. She stresses the importance of going to the doctor for regular check ups, but she also emphasizes the need for awareness about the the human papillomavirus (HPV) which is the likely cause of her cancer. “It’s something kids can get vaccinated for,” she says. “You can prevent it.” Jennifer says she knows the vaccinations aren’t right for every family, but she hopes people will talk to their doctors and ask about the risks and possible prevention options for HPV.

Every once in a while the magnitude of what she had to give up strikes her, “but I don’t let myself get weighed down by that one thing,” she says. In fact, she says she feels really lucky and thankful for her family and her support network and she’s looking forward to her twin sister starting a family. “I’m hoping my sister gets pregnant,” she says. “I’d love to be an aunt.” She also hasn’t given up on motherhood. She and her sister are adopted so that feels like a very real option for her at some point.

In the meantime she sees her doctor every three months. At the two year mark she’ll do check ups every six months. She’s returned to running and tennis, she’s gone back to school, and she’s moving forward. “I just love my thirties,” she says. “I’m grateful for every single thing.”