Women Patient Stories Archives

Deceived But Not Defeated

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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.

Nancy’s Lung Cancer Journey

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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.

Introducing Darla Brown: An Empowered Patient

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“People with cancer who actively participate in their fight for recovery along with their physicians and healthcare professionals will improve the quality of their lives and may enhance the possibility of their recovery. Combining the will of the patient with the skill of the physician – A powerful combination.” ~ Harold Benjamin, PhD, 1982

In 2010 I became very sick. I was losing weight, had excruciating pain in my pelvis, and had extremely heavy, abnormal menstrual bleeding. I went to a doctor to get help. Unfortunately, that was just the beginning of my healthcare saga. I went through several late nights in emergency rooms (often sent away with painkillers), to more ultrasounds than I could count, to countless specialists, and yet the pain and other symptoms only worsened.

The first doctor I visited assumed the culprit was an ovarian cyst and each subsequent doctor I saw took her word for it.  I should admit something at this point in my story. Up until this point, I tended to be passive about my health care. I didn’t question diagnoses or treatments. When so many doctors agreed on my diagnosis, how could I question them? However, when I eventually became “patient active” (a term that I later learned), it actually saved my life.

One sleepless night, I woke up on the floor of my kitchen. The anemia (a result of the abnormal menstrual bleeding) had caused me to pass out while getting a glass of water and I had hit my head.  I went back to the doctor the next day and insisted more tests be done.  I implored, “Please don’t send me home again without a real diagnosis.” I demanded something be done. This was my first step to becoming an empowered patient.

Empowered patients realize that they have to make the healthcare system work for them. Through my experience I realized:

  • It is too easy to get passed around from doctor to doctor in our healthcare system. This wastes valuable time.
  • It is easy for doctors, who can be overburdened, to focus on the most squeaky wheel and forget about passive patients.
  • Had I been empowered sooner in my healthcare journey, I would have gotten to a diagnosis sooner and my cancer would not have become life threatening. My cervical cancer symptoms were actually evident from the start and yet I went undiagnosed for several months.

I was finally diagnosed with stage 2 cervical cancer and found a wonderful healthcare team at Cedars-Sinai Cancer Center. I didn’t have insurance at the time (I was too sick to work and this was before the ACA/Obamacare) but I did qualify for a California state run program called the Breast and Cervical Cancer Treatment Program (BCCTP).

By the time I actually got into treatment, the tumor had grown and had positioned itself inside my cervix so that surgery to remove it was no longer an option. Instead, I went through two months of daily external radiation, weekly internal radiation (also known as brachytherapy), and weekly chemotherapy treatments. I am so grateful that it was treatable, and I am thankful for the healthcare system that made it so. However, had I been properly diagnosed and treated earlier on, I would have required less invasive and less expensive treatments.

Since my diagnosis and recovery, I have spoken to many patients about their experiences and I am honored to be invited to share those stories and lessons in future blog posts.

5 Lessons Learned from an Ovarian Cancer Survivor

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Editor’s Note: Blog written by MyLifeLine.org founder and ovarian cancer survivor, Marcia Donziger. She shares 5 of the lessons learned after she was diagnosed with ovarian cancer at age 27. 

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Marcia Donziger

In 1997 I was 27, happy, free, and traveling the world as a flight attendant. Newly married and ready to have a baby, I felt strong and invincible. My future was unfolding just as I expected it to. Until the symptoms appeared ever so subtly. Squeezing cramps around my waist. It hurt to pee. After a few weeks, I marched my invincible self into my doctor’s office, told her I diagnosed my own bladder infection, and may I please have antibiotics.

She decided to investigate a little further. After an ultrasound, she discovered a grapefruit-sized tumor growing on my left ovary. “Could it be cancer?” I asked. “No,” my doctor assured me, “you’re too young to have cancer.”

Surgery was scheduled to remove my “benign tumor.” I was excited to get it over with, so I could go on with my life and have babies. After 5 hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing in pain. My doctor hovered over me and broke the news, “I’m sorry. You have ovarian cancer. You’ve had a complete hysterectomy. We took everything out.”

What I heard loud and clear was “Cancer. You can’t have children.”

The diagnosis came as a shock. Stage IIIC ovarian cancer had taken over my abdomen, resulting in an emergency hysterectomy that I was not prepared for. The intense grief hit immediately. The loss of my fertility was most crushing. I had always wanted to be a mom.

Halfway through chemo treatments, I celebrated my 28th birthday, but there wasn’t much to celebrate. My marriage was dying. Cancer puts tremendous stress on a couple. Some couples can handle it together like champs. We didn’t. We divorced 1 year from the date of my diagnosis.

After treatment ended, I looked in the mirror to see what was left. I was 28 years old, ravaged physically and emotionally, divorced, and scared to date as a woman unable to have children. Who would love me now?

Now, almost 20 years later, I feel strong again (although not invincible).

With the benefit of time and perspective, I’ve distilled that traumatic cancer experience into 5 life lessons:

  1. Trust grandma’s reassurance, “This too shall pass.” As an ovarian cancer survivor herself, my grandma is living proof of this timeless wisdom. Stressful events don’t have to be permanent. We don’t have to be victims. Although cancer is extremely painful and unwelcome, the bright spot is we are forced to build character traits such as resiliency, emotional courage, and grit.
  2. Create your own joy in the midst of crisis. There are ways to uplift yourself during the chaos of cancer treatment. For example, I took a pottery class throughout my chemo months to find solace in distraction and art, which helped soothe my soul and ease the journey. What would make you happy? Do some-thing just for you.
  3. Stop doing what you don’t want to do. If you were doing too much out of obligation beforehand, try to change that. You are only obligated to make yourself happy. No one else can do that for you. The key is to use this wisdom to prioritize your time and honor yourself, so you can be healthy for others. Drop what doesn’t serve you. Drop the guilt. Life will go on.
  4. Connect with others. The emotional trauma is hard to measure in a medical test, but it’s real. Anxiety and depression can go hand-in-hand after cancer—it did for me. In response to the emotional challenges I experienced, years later I founded MyLifeLine.org Cancer Foundation to ease the burden for others facing cancer. MyLifeLine.org is a cancer-specific social platform designed to connect you with your own family and friends to ease the stress, anxiety, and isolation. Gather your tribe on MyLifeLine. You are not alone.
  5. You are lovable after cancer. No matter what body parts you are missing, you deserve love just as you are. Cancer tore down my self-esteem, and it took significant effort to build it back up. I am dedicated to personal and professional growth now. Look into your heart, your mind, your spirit. Try fine-tuning your best character traits, like generosity or compassion. Never stop growing and learning. We are not defined by the body.

To wrap up my story—I learned that when one door closes, another opens. Today I am the proud, grateful mother of 11-year-old twin boys. Born with the help of a surrogate mom and an egg donor, my dream finally came true of becoming a parent. Where there is a will, there is a way. Never give up on your dreams!

About MyLifeLine.org: MyLifeLine.org Cancer Foundation provides free websites to connect cancer patients with family and friends so patients feel supported. To learn more about how MyLifeLine.org can help you or someone you know affected by cancer, please visit www.mylifeline.org.

Real Stories of Pancreatic Cancer

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Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Pancreatic Patient 1: Female (Canada)

This is my first entry. A friend directed me to a related site today, and somehow I ended up here. I was given the pancreatic cancer verdict the end of last year – after months of testing and being told ‘whatever it is, it isn’t cancer’. Ha! So much for the – it isn’t cancer theory. I was referred to a world class surgeon in Toronto early this year who was able to do a Whipple procedure, removing about a third of my pancreas.

Initially he thought he got it all. However subsequent scans revealed the original cancer had metastasized into the liver. So then it was off for chemo. What a nightmare. Again, an excellent oncologist at an excellent facility. I was put on the 5-FU regime (how appropriate is that name!) from May-Nov. Twelve treatments in total. Nearly killed me. I don’t think I have ever felt as ill as I did during the 2 weeks between treatments. Just began to feel normal when it was time to begin all over again. But, by the end of the year my tumors had reduced considerably, and my oncologist considered me his poster girl. We all knew the reality of pancreatic cancer.

However, by the end of February the party was over. The tumors were back. So another hit of 5-FU. This time the drug concoction plus the accompanying steroids, triggered bleeding abdominal ulcers. It was decided to discontinue 5-FU. I am now receiving Gemcitabine, a less aggressive treatment. I feel I’ve been given a reprieve chemo-wise, but only time will tell if this will work for me or not.

I would be very interested to hear from anyone with pancreatic cancer. I am blessed with a wonderfully supportive husband, family and friends. Life is good. But I hate this disease with a passion. Acceptance of it is not in my vocabulary.

Pancreatic Patient 2: Female (USA)

Just found this site and today is my first entry. I was diagnosed the end of June with inoperable pan can. I went through an experimental drug trial for Tnferade in the fall. It was absolutely brutal….and did nothing as far as we know. My tumor has remained basically “stable” since my diagnosis, with my current treatment of gemzar every other week. The gemzar really knocks me down for a few days, but being as I’m still “stable”, I guess it’s worth it. Early September of this year I spent two weeks in ICU, as all of my treatments/drugs created a 5cm duodenal ulcer……Had no idea I had it until it began to bleed profusely…..10 pints of blood later, I’m still here. Back to work now, but only three days a week. Absolutely dreading the winter, having lost 50lbs since this started I don’t have an ounce of fat for insulation!

Feeling so much better since the ulcer was taken care of! I believe it has been a undetected problem for quite some time, but how would you know….I mean was I having a lot of abdominal pain…yes….but I have pan can so how do you differentiate? Best of all I am sleeping better. Prior to the episode, I was usually only able to sleep two hours or so at time! Now my sleep is nearly “normal. I had plans to go to Vegas with my family in October for a family wedding….but of course was side lined by the hospitalization. Was able to rebook my husband’s ticket and mine for the first week of December and am excited at feeling well enough to have a good time…..and have some nice weather, if only for a weekend!!! Of all the compromises this illness has forced upon me, not being able to tolerate traveling much has really been one of the worst things since I got sick. Prior to getting sick I travelled the world extensively. I have plans to celebrate my 50th birthday this March in London…and soooooo hope I will still be well enough to do it!

Hello friends! Still here!!! Have gained back 25-30 lbs. and doing much better! Been off chemo for eight weeks now. The last round has damaged my nerves in my hands and feet. The doctors say they have exhausted all established tx options for me. This is not necessarily bad news, as the reason is more people in my shoes…don’t get this far. My last scan showed my liver mets are nearly imperceptible and the once very large head tumor itself shows a “residual”! They don’t have any idea what this means in the long run, and consider me a “lucky” anomaly. I am far from the person I was physically, before this started…but certainly grateful to still be here. I hope someone reads this post who has been recently diagnosed with inoperable pan can……I know that the odds are so very poor for most of us….but PLEASE believe there are cases like mine out there…..It isn’t always a 3-6 window. When I was diagnosed, I never expected to be here this long…26 months and counting. Not that I was being a defeatist or negative…..It’s just as a healthcare professional myself, I understood the grave reality of my situation. That said….we all MUST remember….ever case IS different and the best advice I can give is to always stay positive!!! Since I the first of the year I have begun to try to resume my life’s passion….regular travels. I have been to London twice, one in March to celebrate my 50th with friends from around the globe, and last month for a music symposium my husband was invited to attend. I plan on getting back to London in a month or two, and to Vegas in September!!! Anyways…thanks for reading…and stay positive!!! XOX

Pancreatic Patient 3: Female Caregiver of Male patient (USA)

Just little background… My husband, 54, was diagnosed with Stage IV Pancreatic Cancer last Sept. We went to have the Whipple procedure and found the cancer had spread to his abdominal cavity. He just completed his 10th round of Folfirinox. The treatment side effects have been continuing to get worse…. he sleeps most of the day and when he is awake he is in pain. His weight has gone from 220 to 150 in the last year and with his appetite gone it continues to go down. We have been holding on to the hope that once he completed 12 rounds of Folfirinox they would do another CT Scan and God willing the spots on his abdominal wall would be gone.

We thought he would then be a candidate for the Whipple. He has a tumor in the head and tail of his pancreas. Today we were told that wouldn’t be happening…. while I understand the reasoning (the lengthy recuperation period, the added weight loss and the overwhelming odds that the cancer would come back anyway) I am heartbroken. I had convinced myself that we were going to beat this. I never let myself think we couldn’t. I’m supposed to grow old with this man, our “golden” years…. we raised three beautiful children together, watched the oldest get married, watched them graduate and go their own ways…. it was supposed to be “our” turn. Our kids are 25, 26 & 30.

Today we had to tell them that time is limited. All I can hope for realistically is another wonderful five years… I really hope I get another 5 years.