Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Cancer, COVID, and Change

“There’s something to be said for not being a patient,” one of my doctors said.

“It feels so good,” I said during our telemedicine appointment, “to be away from the hospital for eight weeks in a row.” It’s the longest hospital break I’ve had since being diagnosed with cancer last summer. Before mid-March, I’d been to four to ten medical appointments every month. Being a cancer patient felt like a full or half time job. Because of the pandemic, I’m now treated by my oncology team from the comfort of my own home.

I don’t miss shuffling from room to room or floor to floor and sitting in waiting rooms for hours. I love not needing to ask for rides or take cabs or public transportation while my white counts are low. I don’t miss being poked,  prodded, weighed, and measured or having my vital signs documented in hallways while removing my coat, wig, and shoes. I love not having to roll up sleeves for the vials of blood to be drawn or to pull down my pants so the doctor can put a stethoscope to my belly and bowels.

Because of the increased health risks at hospitals, new access to telemedicine, and flexibility around clinical trial protocols, I can see my oncologist, face to face, through Zoom. Questions can be answered ,via email, a text, or a phone call. Clinical trial drugs are overnighted to me.

I enjoy the time and money I’m saving and the convenience of getting all care from home. But I also miss the real-life hugs, handshakes, and high fives that used to come with seeing the clinical team in person.

COVID Challenges

Many cancer patients are losing jobs, homes, loved ones, and health insurance. For those newly diagnosed with cancer, surgery, scans, and treatments must be done all alone. Those in active treatment are often terrified of catching COVID-19 while immunocompromised. Others are afraid hospital visits will expose our family members to COVID.

It’s startling how much hospital protocols and procedures have changed. When I look back or think about what comes next, I worry. I hope the pictures and stories below capture what it’s like to be an oncology patient and how swift and severe the COVID-related changes over the last few months have been and continue to be.

From Person to Patient

My partner drove me to the hospital on the morning of my surgery. We checked in before 6a.m. and waited, with others, in the lobby.

Eventually, we were called up and walked, single file, through halls by someone escorting us to the pre-op area. Each one of us was assigned a bed (pictured) and a nurse (not pictured). The photo is of the pre-op area.

My partner got to visit me before surgery. He was there when the surgeon, nurses, fellows, and anesthesiology came to prepare me for surgery.

If surgery were scheduled today, my partner wouldn’t be able to stay with me.

The Shock of a Post-Op Diagnosis

This is me in post-op. My partner took this photo on his phone and was able to share it with my family and friends to let them know I made it through surgery. They were worried because it went hours longer than expected.

In the photo, I’m high as a kite and happy to be alive. I’ve just downed the iced coffee my partner snuck in (as planned and with permission from the nurse). In the photo, I am still in shock that my surgery was five hours long, it’s afternoon, and that cancer was found. I don’t yet know how serious my diagnosis will be. That will come twelve hours after surgery when the surgeon explains my cyst was actually a cantaloupe-sized cancerous tumor, aggressive, advanced, and usually chronic. Mercifully, my partner is with me as she explains that she had to do a total hysterectomy, removing ovaries, fallopian tubes, lymph nodes, and my omentum and lays out the timeline for chemotherapy.

My partner held my hand and crawled into my bed to hold me while I sobbed. But he provided far more than essential emotional support. He helped me stand and keep my balance, helped me get to my first trip to and from the restroom. He was there to advocate for me when I dozed off and to get the nurse when my call button went unanswered. He was the one who provided my loved ones with updates. He was the one who snuck my favorite health foods to help “wake up” my digestion enough to allow me to be discharged after one day.

It’s hard to imagine what that traumatic and challenging day would have been without him. I can’t imagine recovering from major surgery and receiving such devastating news alone but it’s what many diagnosed with cancer during COVID now endure.

At-Home Adjusting & Recovery:

Going home after surgery is comforting and scary. My right leg was giving out from under me because my obturator nerve “got heat” during my surgery. I had trouble standing in the shower or lifting my right leg onto the bed or into a car. I had extensive swelling and bruising on my right side and pelvic area and had a bit of a reaction to the bandage tape. I didn’t know what was normal. And after a phone call to the hospital, I was asked to come back in for a check-up.

Today, I’d either have had a telemedicine appointment or need to decide if an in-person visit with a medical professional is worth possible exposure to COVID. These are the types of decisions we are all facing but it’s especially scary when one is already vulnerable and fighting for life.

Early Treatment: Chemo Buddies are Not Optional

Getting chemotherapy infusions is time-consuming, scary, and intense. Everyone reacts differently to the many drugs given with chemotherapy (such as Benadryl, steroids, Pepcid, and anti nausea drugs). Everyone reacts differently to the chemotherapy, marked hazardous,  that require the nurse to wear gloves, masks, and protective clothing to prevent contact in case of accidental spills. Some drugs make you sleepy, and parts of your body numb. Others make you feel amped, wired, and agitated.

Some cause nauseous, headaches, or allergic reactions, immediately and others not for days or weeks.

Having a chemo-buddy like Beth was a huge help. She was the one who asked for window seats in the infusion center, who made sure I got warm blankets. She massaged my feet and reminded me to listen to guided imagery. She sat with me in waiting rooms as we waited for my labs to come back to make sure my white and red blood counts weren’t too low, my liver counts not too high, and that the chemo was making my tumor marker scores go down.

She was the one who touched the elevator buttons for me, the one who walked me to the car and handed me off to my fiancé at the end of the day. She was the one who got me water, coffee, or snacks.

I felt safer whenever I had a chemo buddy with me and Beth would also take notes and make sure I didn’t skip any of my questions just because the oncologist seemed in a hurry.

Beth was not only a source of support but provided an extra pair of hands to plug in my iPhone, to hold my bags, food, or books. She was the person I could share tears, laughs, and heart to hearts with. She listened as I worried about my daughter, as I struggled to balance work and parenting.

She was there to support me as I talked endlessly about healthy eating, fasting, supplements, and complementary medicine. But the greatest comfort of all was knowing she would be there if passed out, fell, or had an allergic reaction to all the treatment drugs. At my last treatment, I was alone and Beth at home. It was hard.

In-Between Hospital Visits: Public Services & Personal Support

 

Social distancing during treatment is hard even for introverts like me who need a lot of alone time. When physically weak, short visits with loved ones who bring food, hugs, and gifts are life-affirming and life-changing.

Those who show up do so for cancer patients as well as our families. They help us to take care of our kids, partners, pets, plants, and housework. They help us manage as we face fear and loss, whether losing jobs or body parts, or hair and having few or no visits is hard. Today, barber shops where we might get our heads shaved are closed.

The wig shops and stores we go to for hats and head coverings are often closed.

We can’t go out to eat with loved ones, or do yoga on good days. We can’t have parties for our loved ones to create normalcy or new rituals. We can no longer go out in the public either. We can’t do things such as sitting alone writing in a journal and drinking a smoothie when swallowing food is too hard.

We can’t travel to remind ourselves there is still beauty and magic in the world and to enjoy our loved ones and lives as much as possible.

These are not all small things or luxuries in coping with the brutal effects of cancer treatment and chemotherapy. They can change the cancer and recovery experience and all that helps keep us strong. 

Later Treatment

We need others when we are sick. We might need help standing, walking, or eating. We might need rides, treatments, or blood or platelet transfusions. We might need help articulating symptoms and side effects. To have fewer in-person visits when so medically vulnerable can be anxiety-producing.

We also have less in-person celebrations with our clinical teams when we finish a line of chemotherapy or have a cancer-free scan. We no longer have informal pet therapy either with the cheerful and cuddly animals of friends, family, and neighbors.

I can’t imagine going to chemo alone, depleted, and with low white counts.

The increased risks, vulnerabilities, and lack of human company and tactile comforts feels indescribably epic.

Maintenance Treatment & Clinical Trials

My immunotherapy infusions (or placebo) have been put on hold for the past two cycles. I asked if I could remain in my clinical trial if I refused to come to the hospital for treatment until the risk of getting COVID is decreased. Luckily, I’ve been allowed to stay home. Clinical trial protocols, in general, are much more flexible as a result of the pandemic. My medication (or placebo pills) are mailed to me. Before March, in-person prescription filling was required and always took hours.

However, I’ve been weighing what I’ll do if I have to weigh virus-related risks against the possible benefits of clinical trial treatment. If I’m required to be treated at the hospital I may drop out of the trial. This is one of the many difficult decisions oncology patients often face but it’s made more complicated because of the coronavirus. .

Have Some Changes Been for the Good?

The losses, challenges, and changes are worrisome and real. That said, not all the COVID-related changes for oncology patients are bad. The whole world is wearing masks, staying home, socially distancing, and worrying about health, wellness, death, and dying.

Instead of being stared at when I wear a mask, I’m now in good company, because much of the world is doing the same. Many of us are consumed with health issues and worried about health, mortality, and immune functioning.

To be reminded, once again, that health and life aren’t guaranteed to anyone, that we are all facing mortality, and must appreciate every day we have, is strangely comforting. While I’m reminded of our collective vulnerability, to hear health concerns, risks, and challenges confronted as the world and nation’s collective concern is a reminder that none of us are being personally picked on for failing at being human, we are just, in the end, all excruciatingly fragile and mortal.

“I feel like I’ve been slow-dancing with death since last summer but now I feel less alone,” I told my friend Kathy. “It’s like others have joined you on the dance floor,” Kathy said. “Yes,” I said, which once again makes me feel like a person rather than a patient and there’s something to be said about not being a patient….


Resource Links:

  1. The National Cancer Institute  guide: Coronavirus: What People with Cancer Should Know.
  2. American College of Surgeons: (ACS) Guidelines for Triage and Management of Elective Cancer Surgery Cases During the Acute and Recovery Phases of Coronavirus Disease 2019 (COVID-19) Pandemic
  3. Sample of patient visitation changes hospitals have implemented from Mass General Hospital.
  4. Telehealth at Dana Farber.
  5. Coronavirus (COVID-19) Update: FDA Issues Guidance for Conducting Clinical Trials

In this moment

“Is there a pressure to be positive all the time?” my friend Kathy asked.

It’s a good question. I said, “No,” and then “Yes,” and added in a “Maybe.”

But it’s not a simple yes, no, or maybe. It’s actually Yes-No-Maybe all at the same time. My kid is on Facebook and so is my family. My friends are on Facebook and they want the best or at least to know I’m not suffering. I’m aware of that and of them. But that doesn’t mean I show up fake or put on fronts. I don’t.

The pressure to be positive isn’t external. I am safe to be real with SO MANY people and that luxury is a gift beyond measure. The desire to be positive comes from within but it’s not motivated by pressure. It’s real. In general, I ACTUALLY FEEL positive.

And also, when my oncologist asks how my partner or daughter are doing, I say:

“Well, I’m cranky, lethargic, have chemo-brain, and obsessed with recurrence so that’s fun for them…”

That’s also real.

Real is positive.

So, when people say I’m strong, a rock star, a warrior, and a fighter, I can’t say I feel I am any of those things. My day to day to life has been changed and though I feel 100% half-ass as a mom, partner, friend, relative, and employee – I also know I’m doing the best I can.

I don’t even have much time to think of how I’m doing because I’m so busy doing, if that makes sense.

It’s like I woke up after surgery standing in the middle of a highway I didn’t drive myself on. The focus is dodging the cars going 75 m.p.h. on my left and right while feeling groggy and confused. When I manage to make it to the sidewalk or the rest area, the relief I feel is real. I’m happy to be alive and out of danger. It’s a genuine and consuming experience. I’m relieved any time I’m not in the road and also aware I could be dropped back on that highway in another minute, day, week, or year.

That’s the complexity and reality of living with cancer (#ovarian, high-grade serious, stage 3) that, even when it’s effectively treated, still recurs 75% to 85% of the time. To have no evidence of disease isn’t the type of blessing I’ve been in the habit of counting.

For decades, I have had the luxury of physical wellness and had never stayed overnight in a hospital. Health isn’t something I take for granted anymore but that doesn’t make me a warrior as much as it makes me someone changed by cancer more than by choice.

I used to think people were sick with cancer, and either mounted a “successful” fight and returned to living or lost “the fight” and died. It seemed either/or and as those were the two extreme outcomes.

I knew my mother HAD cervical cancer in her early 20’s and survived. I knew that my Nana and her two siblings had cancer in their 60’s, and did not. They died.

I know cancer is always a full-on fight for the person with cancer and those that live with and love them (us), but fights are won or lost and that is the problem with the “fight cancer” narrative. It’s way too simplistic for the complexity of cancer, cancer treatment, cancer survivorship, palliative care, and grief.

It omits the vast amounts of time that many of us live with cancer. We live with it in active form, or in remission, or in fear of recurrence, and sometimes with recurrence after recurrence. That way of living may last one or two years or one or two decades. We may have years we seem to be “winning” the fight and years we seem to be “losing.”

But winning and losing is far too simplistic. Some live and have loss. Some die and should be counted as winners.

I’d never known some fight the same cancer repeatedly, or “beat” it before getting another kind and another and another. I didn’t know that people cancer can be a lifelong disease and that some kinds are genetic time bombs in our bodies and families that can put us at risk even if we never smoked.

I didn’t know that one can have or five surgeries, that the side effects can start at the head (loss of hair, headaches, chemo brain, no nose hair, dry mouth, hearing loss), for example, and go all the way to the feet with lymph edema, joint pain, neuropathy, and that all the organs in between can be impacted as well.

I didn’t know that most cancer side effects are not from cancer but the treatments to fight, eradicate, and prevent more cancer.

I didn’t know that in addition to chemo, one might contend with liver or kidney issues, with high or low blood pressure, with changes to the way heart beats, the digestive symptom works.

I didn’t know that cancer surgery might include a hysterectomy and removing some or several organs, lymph nodes and body parts I’d never heard of. I didn’t know how it’s impossible to know what is from cancer, chemo, menopause or the piles of pills one is prescribed.

I didn’t know how much the body can endure and still keep going. I didn’t know I’d have a body that would have to learn and know all that I was mostly ignorant about -even though cancer is a disease not unknown to my own family members.

I am still learning and knowing and going. I hope what I learn keeps others from having to have first-hand knowledge of the cancer experience.

And even as I say that I know the ways I’ve been changed are not all bad, hard, or grueling.

I didn’t know that at, even in the midst of being consumed by all things basic bodily functioning (breathing, heart beating, eating, pooping, sleeping, and staying alive), one can also be grateful, satisfied, and appreciate life and loved ones.

I know it now and feel grateful daily.

Five months after my diagnosis, I’m what’s called NED (No Evident Disease). It means that after surgery, and then 5 rounds of chemo, a carbo/taxol combination every 3 weeks, there is no sign of ovarian cancer. My CA 125, a cancer marker in the blood, is back to normal. Things are looking better today and I’m grateful, optimistic, relieved, but also know that my life is forever changed, and I’ll never be out of the woods.

Despite my NED status, my chances of being alive in 10 years are 15%.

Despite my NED status, my chances of being alive in five years are less than 30%.

Did you know 70% of those with ovarian cancer die within five years of being diagnosed?

I’m not a statistic, but a person – still, it’s hard not to do the calculations.

5 years from my diagnosis I’ll be 57, and my daughter 21.
5 years from my diagnosis, my partner will be 62.
Will we get to retire together, ever?  Will I get 5 years?

It’s hard not to wonder if some or all of those five years are what most would consider “good” years and how I will manage well no matter what? And how my loved ones will fare…

So I focus on moments, days, and now.

My new mantra remains, “In this moment….”

It’s how I approach all of my days.

I do think and worry about the future, and even plan for the worst while also planning for the best. Because the best is always possible.

What if, I’m the 15% and live for 10 or more years? What if I make it to 62? What if a new way to detect, manage, or treat ovarian cancer is discovered? What if I discover some synergy in remedies and medicines not yet combined?

Maybe I will see my kid graduate college or start a career. Maybe I’ll help her shop for furniture in a new apartment. No one knows the future. No one guaranteed more than now.

Maybe I’ll get to go to Europe with my partner, elope and return married, or stay forever engaged.

Maybe I’ll attend a mother-daughter yoga retreat with friends like I’ve always wanted to do.

Maybe I’ll spend a month at a cabin writing and eating good food with my besties?

Maybe I’ll be able to be there for my family members and friends the way they have been there for me?

Maybe I’ll get to walk my dog at the same beach and park, with my guy, my brother and sister-in-law, and our dogs and kids?

I don’t know how much time I’ll get or what life holds.

I know when my Nana died in her mid 60’s it seemed way too soon. I know that now, if I make it to my mid 60’s, it will be miraculous.

I don’t put as much into my retirement savings.

I think more about how to spend time, and money, now.

These are not negative thoughts they are the thoughts of someone contending with cancer and wide awake while pondering my own mortality.

“You won’t die of this,” some have said. “Cancer won’t kill you.”

But no one knows that for sure. It’s not an assurance the oncologists offer.

People mean well when they say such things but I no longer bite my tongue when I hear these words.

I say, “I might die of this,” (and I think, but don’t say, and you may as well).

I do remind people that we are all going to die and few of us will get to choose the time or place or method. It’s not wrong to acknowledge mortality. It’s not depressing and it does not mean one is giving up. I want to be responsible, and quickly, as I don’t have the luxury to be as reflective as I used to be because cancer is all-consuming.

I’ve barely had a moment to reflect on the past five months never mind the last five decades. I am trying to stay on top of the bare minimum requirements of being alive. I can’t yet keep up with emails or phone calls or visits. Projects and goals and plans of all kinds have shifted, paused, halted, or been abandoned.

My energy is now a resource I have to monitor and preserve. My will is not something I can endlessly tap into or call upon to motor me and keep me motivated. There’s no resource I have yet to tap into or call upon. Each day, I must consciously and repeatedly work to fill the well. And now, when friends and family who work while sick, I no longer think they are tough or strong. I think of how we routinely punish and ignore our bodies. I notice how often we run on fumes, require more of ourselves than we have as though we will never tire out.

I think of all those who must or feel they must keep going no matter what, without pause or rest, oblivious to the toll it will take or of those who have systems that can’t fight their germs. And I think of employers who sometimes require it because they offer no paid time off.

I used to run myself ragged. I used to say, “I’m digging deep, into my bone marrow if I have to.” I wasn’t being literal.

Now, when my iron and my platelets go low, I think of my old words in new ways. Now, even my bone marrow isn’t what is used to be.

I’m entirely who I always was and completely different.

It’s both.

I am more and less of who I was.

My life and days are simple and structured now and also heavy, layered, and complex. Who and what fills my day, by choice and not by choice, is radically different.

Cancer changed my life. That’s irrefutable and will be whether I live or die in the sooner or in the later.

I speak with and interact with doctors, nurses, life insurance and disability insurance and pharmacists more. I spend more money on supplements, clean eating, and make more time to walk, exercise, and sleep. There’s so much less I am capable of.

But sometimes, even without hair, I feel totally like myself.

Sometimes, like this week, my daughter caught me in the middle of life, reading a book, petting the cat, on my bed in my heated infrared sauna blanket. I was relaxed and at ease.

I shared this photo and someone commented on how my “cat scan” was quite feline, – the image brought a whole new meaning to the “cat scan” image.

I laughed and laughed and laughed. I’m still laughing.

In this moment, in many moments, I’m humbled by the enormity of all things cancer and being alive. That’s real. That’s there. It can be intense.

But also, in this moment, I’m laughing.

And laughing, it turns out, is my favorite way to live.

Empowered! Podcast: Meet Andrea Conners

Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.

 


Notable News February 2020

February may be a short month, but there is no shortage of new and exciting cancer research and treatment news. Could cervical cancer be eliminated for good? Are prebiotics the key to stopping melanoma? Well, take a bite of asparagus and read on to find out.

Vegetables are always an option for healthy eating, but you might want to consider adding (or increasing) two, in particular, to your diet. Asparagus and onions are sources of a prebiotic, and scientists have found that prebiotics help the immune system fight cancer in mice, reports genengnews.com. When the prebiotics, mucin and inulin, were fed to mice, they not only boosted the immune system, but they slowed the growth of implanted melanoma tumors, and delayed drug resistance. A delay in colon cancer growth was also noted. Prebiotics are food for bacteria and they cause growth of the good gut microbial communities, changing their make up, and thus causing the anti-cancer effect. The researchers say the study highlights the importance of the gut microbiome in treating cancer. Mucin is a protein found in intestinal mucus, and inulin is a plant fiber found in asparagus and onions. Learn more here.

With some perseverance and dedication, the World Health Organization (WHO) and other professionals believe cervical cancer could indeed be eliminated by 2120 reports, medicalnewstoday.com. Elimination could occur even sooner in some areas of the world. There are two separate studies that indicate the possibility. One study finds that vaccinating girls against the human papillomavirus (HPV), especially in low and middle income countries, could lead to an 89.4 percent reduction in the cancer. HPV is the top risk factor for cervical cancer. The other study shows that screening is another way cervical cancer could be eliminated. Experts say that if women have cervical cancer screenings just twice in their lifetimes, that could reduce the occurrence by 96.7 percent. The findings of the two studies are being used to establish the WHO’s cervical cancer elimination strategy, which will be presented in Switzerland in May. You can find more information here.

Screenings for cervical cancer may save lives, but could other screenings end up doing more harm than good? Early detection could be leading to over diagnosis of cancers, reports sciencealert.com. Believe it or not, not all cancer cells pose a health threat. Sometimes people have abnormal cells in their bodies for their whole lives and those cells never cause a problem. So, detection and treatment of these cells can potentially do more harm than good if people are being unnecessarily exposed to cancer treatments that can be stressful to the body, say scientists in Australia who have studied the risks of over diagnosing cancer. The researchers determined that breast and prostate cancers are the most over diagnosed and found that both cancers saw a 50 percent increase in occurrence when early screening tools, such as mammograms, were introduced. In the UK research shows that for every woman whose life is saved from breast cancer screening, three women will be diagnosed unnecessarily. The challenge is in finding balance between diagnosing and over diagnosing. More details about what the Australian researchers discovered can be found here.

When cancer is diagnosed and needs to be treated, it’s important to have options. The United States Food and Drug Administration (FDA) approved a new treatment for high-risk nonmuscle invasive bladder cancer, reports urotoday.com. Approved in early January, pembrolizumab (known as Keytruda), gives the 80,000 bladder cancer patients diagnosed each year, another possible treatment option. In trials, researchers found that 40 percent of patients had a complete response to the medication. Learn more about Keytruda’s journey to approval by the FDA here.

Another possible option may be available to women who want to have children, but are infertile after cancer treatment, reports cbsnews.com. A technique called in vitro maturation (IVM) recently resulted in the birth of a baby to a 34-year-old cancer survivor. The technique is still considered experimental, but you can learn more about it here.

Knowing your options is what patient empowerment is all about. Keep reading the Patient Empowerment Network blog to stay informed, and you’ll find more Notable News right here next month. Until then, don’t forget to eat some asparagus!

How am I Diagnosed with Ovarian Cancer?

This article was originally published by the National Ovarian Cancer Coalition here.


Most women with ovarian cancer are diagnosed with advanced-stage disease (Stage III or IV). This is because the symptoms of ovarian cancer, particularly in the early stages, often are not acute or intense, and present vaguely. In most cases, ovarian cancer is not detected during routine pelvic exams, unless the doctor notes that the ovary is enlarged. The sooner ovarian cancer is found and treated, the better a woman’s chance for survival. It is important to know that early stage symptoms can be difficult to detect, though are not always silent. As a result, it is important that women listen to their bodies and watch for early symptoms that may present.

Did You Know?

The Pap test does not detect ovarian cancer. It determines cervical cancer.

Screening Tests

Although there is no consistently-reliable screening test to detect ovarian cancer, the following tests are available and should be offered to women, especially those women at high risk for the disease:

  • Pelvic Exam: Women age 18 and older should have a mandatory annual vaginal exam. Women age 35 and older should receive an annual rectovaginal exam (physician inserts fingers in the rectum and vagina simultaneously to feel for abnormal swelling and to detect tenderness).
  • Transvaginal Sonography: This ultrasound, performed with a small instrument placed in the vagina, is appropriate, especially for women at high risk for ovarian cancer, or for those with an abnormal pelvic exam.
  • CA-125 Test: This blood test determines if the level of CA-125, a protein produced by ovarian cancer cells, has increased in the blood of a woman at high risk for ovarian cancer, or a woman with an abnormal pelvic examination.

While CA-125 is an important test, it is not always a key marker for the disease. Some non-cancerous diseases of the ovaries can also increase CA-125 levels, and some ovarian cancers may not produce enough CA-125 levels to cause a positive test. For these reasons the CA-125 test is not routinely used as a screening test for those at average risk for ovarian cancer.

Positive Tests

If any of these tests are positive, a woman should consult with a gynecologic oncologist, who may conduct a CT scan and evaluate the test results. However, the only way to more accurately confirm an ovarian cancer diagnosis is with a biopsy, a procedure in which the doctor takes a sample of the tumor and examines it under a microscope.

Research into new ovarian cancer screening tests is ongoing and new diagnostic tests may be on the horizon. NOCC monitors the latest scientific developments. Please visit our Research page for additional information.

Ovarian Cancer: What You Need to Know with Dr. Chad Michener

This podcast was originally published by the Cleveland Clinic on April 23, 2010 here.

Ovarian Cancer: What You Need to Know with Dr. Chad Michener

How common is ovarian cancer and how do symptoms typically present? What are the risk factors? How is ovarian cancer diagnosed and treated? Join Chad Michener, MD as he answers these questions and many more.

Podcast Transcript:

Scott Steele:  Butts & Guts, a Cleveland Clinic podcast, exploring your digestive and surgical health from end to end.

Hi and welcome to another episode of Butts & Guts. I’m your host, Scott Steele, the chairman of colorectal surgery here at the Cleveland Clinic in beautiful Cleveland, Ohio. And we’re very glad today to have Dr. Chad Michener, who is the interim chair for the department of sub specialties in women’s healthcare. Chad, welcome to Butts & Guts.

Chad Michener:  Thanks, Scott.

Scott Steele:  So we always like to start out this with a little bit of background about our guests. And so tell us a little bit about where you’re from. Where’d you train and how did it come to the point that you’re here at the Cleveland Clinic?

Chad Michener:  Long story, actually, so I actually grew up in Springfield, Ohio, one of four kids. I had three sisters. Regular high school, thought I was actually going to go to art school, and kind of out of the blue decided that wasn’t going to be a great stable choice for me. So I went to college with no real plans and kind of just fell into medical school. And then on through went into training for obstetrics-gynecology, and then really enjoyed the surgical aspect. So did a cancer training fellowship at Cleveland Clinic, actually, and then stayed on board for the last 15 years.

Scott Steele:  Fantastic. Well, we’re lucky to have you here. So today we’re going to talk a little bit about ovarian cancers. So give us the 50,000-foot view of ovarian cancer. What is it, and how does it affect the daily lives? What are some symptoms?

Chad Michener:  So ovarian cancer is one of the unfortunate diseases that we find late. So it’s about 23,000 cases a year. We see, unfortunately, about 14,000 women die because we don’t often find it early. And it’s really because of the symptoms don’t always show up until pretty late. So the symptoms are pretty vague. So it kind of fools patients. It fool’s physicians sometimes because it’ll show up as bloating, nausea, I can’t really eat, I have heartburn, relatively new symptoms for patients. And so oftentimes, they’ll go down the pathway of, “Oh, you have an ulcer,” or things of that nature. And so there’s a little bit of a delay in diagnosis there, but generally speaking, we’ll still find that in stage three or stage four about 75% of the time.

Scott Steele:  So we use a lot of these terms, stages this and that. Before we get to the actual staging of it, talk to me a little bit about risk factors. There’s a lot of risk factors with every cancer. Are there risk factors associated with ovarian?

Chad Michener:  So most of the risk factors are things that are not typically preventable. So there’s no big family component; although, about 25% are going to be genetic when you really do all the genetic analysis on patients. However, there are some things that can be protective. So people who have been on birth control pills, it can reduce their risk by 40 to 50% after using those for five years. Having children is protective, breastfeeding is protective. Essentially, anything that limits the number of menstrual cycles a woman has in her lifetime, is things that can decrease that as much as possible. Things you don’t really have control over are what age they start having menstrual cycles or how many years they have menstrual cycles. So the little things in between become important.

Scott Steele:  So when you have these type of symptoms, is it spread all over the place, or how do you differentiate between what is “normal” and what is something that’s concerning? Is there any one of those symptoms that are real red flags that you would say to the women to get in and see their doctors?

Chad Michener:  So not any one symptoms. So they actually looked at studies of healthy women going in for breast screening versus women with pelvic masses that were benign and then, of course, a group of ovarian cancer patients, and the symptoms were actually fairly similar. The big difference was is that patients with ovarian cancer, the symptoms were relatively new to them and they happen more days than not over the course of three or four weeks. So if you’ve got new symptoms that aren’t going away, they’ve been lasting for three or four weeks, they’re there most days, it’s probably worth a discussion; although, a lot of times it’s not going to be ovarian cancer. It’ll be sort of the more common other things.

Scott Steele:  Okay, so I’m a woman. I’m experiencing these symptoms. I’m going to come into your office for an appointment. What can they expect during that appointment and how is this diagnosed?

Chad Michener:  So most times they’re going to do a pelvic exam and a regular exam on the abdomen. If they don’t find much there, or let’s say they feel maybe there is some fullness or thickening in the pelvis, then usually that’ll be followed with an ultrasound. And then depending on what the ultrasound shows, they may get more imaging to follow. We don’t often use markers to look for this because most times the marker can be nonspecific, so it can be elevated for other things, essentially.

Scott Steele:  And by a marker, you mean blood tests?

Chad Michener:  Blood tests, yeah. So in this case, most times we’re talking about a blood test called a CA 125. We don’t use it for screening because it can be elevated for other reasons. But in somebody who has, say, an ovarian cyst or a pelvic mass, that may be a test that follows up to the ultrasound results.

Scott Steele:  And so you have to have a tissue diagnosis in many of these cancers. Is there something that you do to get a tissue diagnosis to confirm that it’s ovarian cancer?

Chad Michener:  So we do, if it looks like there’s a lot of spread already and we’re not quite sure that that’s what it is. Sometimes we’ll do a biopsy that the radiologist will do, using a CT scan or an ultrasound to guide their biopsy. But oftentimes, we’ll actually take patients to the operating room to make the diagnosis ourselves, particularly if it just looks like an ovarian cyst, maybe with some other questionable features. And most times that’ll be done with a laparoscopy, so a little incision through the belly button with a camera. And then they can put in a couple extra working channels to take out cyst, take out the ovary, and then get a diagnosis that way.

Scott Steele:  So before we go into the actual treatment, and let’s just say that they’re facing this operation that you’re talking about, is there anything that women can do to prepare themselves for that operation?

Chad Michener:  Nothing particular. It’s obviously a little scary for them. So trying to just sort of do normal routine stuff is helpful. There will be sort of things that will follow the day before surgery. We’ll have them be on a liquid diet rather than on a kind of heavy diet so that it can kind of clean stuff out through the intestines and make surgery potentially a little bit easier. But other than that, nothing really per se that we get patients ready for.

Scott Steele:  So in other cancers, you have radiation therapy, oncology, you have surgery, you have chemotherapy up front, chemotherapy afterwards. What’s the initial therapy for ovarian cancer? And as you lead into that, can we go back to that concept you talked about, about staging? What are the different stages of it?

Chad Michener:  So stages of ovarian cancer. As a general rule, you’re going to have stage one, which is just confined to the ovary and there’s a little sub stages of that. Stage two would be that it’s outside of the ovary but still confined to the pelvis itself, so it hasn’t spread into the abdominal cavity at all. Stage three would be abdominal involvement, and that can be really anything. It tends to spread on the surfaces of the organs. And so you’ll see little implants, and they can cover the intestines, the liver, a fatty apron called the omentum that hangs off to the intestines is a very common site that we see. And then anything that’s either inside of one of those organs, let’s say there’s a cyst in the liver that’s involved or if it’s in the chest, then it would be a stage four.

Treatment is based on those stages. So if we think it’s confined to stage one, or at least it appears to in surgery, then we do a staging operation where we would take out the ovary, usually the uterus and the other ovary as well. And then we would do lymph node biopsies. We would biopsy the omentum and then biopsy different sites in the abdominal cavity where we often see spread and then followed by chemotherapy in most but not all cases. Advanced stage disease, we spend a lot of time up front getting imaging, sometimes getting biopsies before going to the operating room, to figure out what the diagnosis is and how much involvement there is, to decide if we think we’re going to be able to remove all of the tumor surgically.

If we think that that’s going to be not possible or unlikely, then oftentimes, we’ll start chemotherapy as our first treatment after a biopsy diagnosis and then plan surgery after a few rounds of chemotherapy. So that’s called neoadjuvant chemotherapy. In surgery, we’ll do what we call a debulking operation. We’ll go in, we’ll take out everything possible that we can, and sometimes that can be done laparoscopically. Sometimes it has to be done as a large open incision. And then, if we’re able to shrink everything down surgically, we actually can offer hyperthermic intraperitoneal chemotherapy, or often called HIPEC, and that actually has been associated with better outcomes in people who have neoadjuvant chemo therapy first.

Scott Steele:  That’s kind of honed down in some specifics there. So what can women expect with chemotherapy? And when you talk about a few cycles, how long is that? What side effects do they get from that? Is their hair going to fall out, or is it something that they can tolerate well? If they’re having that bloating, does that get better?

Chad Michener:  Yeah. So chemotherapy for ovarian cancer generally comes in three-week cycles, so 21 days. And sometimes that’ll be weekly treatments, sometimes be just once every three week treatments. It’s actually a fairly tolerable regimen, but there are common side effects such as hair loss. Some people will experience some nausea, but not a lot of vomiting with that regimen. They can get constipation or diarrhea. It’s pretty variable, but those can be side effects of our anti-nausea drugs. And then sometimes people were experienced neuropathy, so they get numbness or tingling in their hands or their feet. And that can be reversible over time, but we do watch that carefully because one of the drugs is associated with neuropathy more than others. After three cycles of that, so nine weeks, we would get another set of cat scans and then decide if it’s something that we can take to the OR at that point.

Scott Steele:  So when you go to the operating room and you’re trying to get out this tumor or multiple tumors in there, is it something that you have to take out other organs? Do people wake up? Do they have to wear a bag? What does that surgery all involve?

Chad Michener:  Yeah, generally speaking it’s going to be hysterectomy, and then the tubes and the ovaries, the omentum commonly. And then the other organs that can be involved oftentimes can be the appendix, the spleen, the intestines, whether that be small intestine or large intestine. And probably about 20% to 30% of patients will have some sort of a intestinal surgery during their debulking operation, most commonly the colon that sits behind the uterus. But most times, we’re able to take that out, put the colon back together, and there’s no ostomies or bags that patients would have to wear. Probably less than 5% of the time, we’ll end up doing a colostomy or an ostomy that is a temporary in most cases. Once in awhile it will be permanent, but that’s a very, very small percentage of patients.

Scott Steele:  So one of the things we know is that there’s different biologies associated with not only just classes of tumors, but within each class of tumor, individual variations exist. So there was a study that recently came out regarding a more of GI cancers about the HIPEC that you talked about, that heated intraperitoneal chemotherapy, that showed that HIPEC wasn’t as advantageous as just getting the tumor out alone. If I heard you right, that HIPEC’s a little bit different beast in terms of the ovarian cancer. What is the role of HIPEC, and who would be a candidate for HIPEC versus just the debulking surgery?

Chad Michener:  So HIPEC for ovary cancer, in fact, is actually relatively new. It’s not done in a lot of centers. And so we’re still trying to figure out exactly who the best patients are for this. As a general rule, we haven’t used it based on cell type. So if it’s an epithelial ovarian cancer, whether it’s serous or mucinous or clear cell or endometrioid, all of those patients are potential candidates, assuming that they’re having a good response to chemotherapy and they have a near complete or near complete debulking surgery. We don’t often use it for what we call germ cell tumors or stromal tumors, which we typically will see in younger women, kind of different population. We don’t know that, say, mucinous tumors are better, which is commonly what it was used for for GI tumors. But I think we just don’t have the data yet. So we kind of offer it to everybody who we’re doing a debulking operation on who’s had chemo up front because there is a survival advantage there, at least in the one study.

Scott Steele:  So how long can women expect to be in the hospital after this? Is it a pretty safe surgery to recover from?

Chad Michener:  Yeah, people do pretty well. So all complications, including wound infections or anything of that nature, bladder infections, you’ll see that in somewhere between 15% and 20% of patients, usually minor complications. Major complications like blood transfusions and things, readmissions to the hospital, retake backs to the operating room, usually we’ll only see that in about 5% of patients depending on the center. Most times, they’re in the hospital for anywhere from about three to 10 days. And it really depends on how much is done in surgery. If there’s bowel surgery or not bowel surgery, if they have a large transfusion for bleeding, they have to go to the ICU, they’ll end up staying longer in the hospital. But I think, as a general rule, people will be usually home within three to 10 days.

Scott Steele:  And do they have to get follow up chemotherapy?

Chad Michener:  Yeah, so if they started with chemotherapy, then usually we’ll finish with three more cycles of chemotherapy, so an additional nine weeks. And we generally try to start that three or four weeks after surgery. If they didn’t get chemotherapy up front and we just took them for a debulking surgery, or if they had early stage disease, then usually they’ll get all of their chemotherapy after, which usually consists of six cycles of chemotherapy.

Scott Steele:  One of the things that you had mentioned was a little bit about the younger women population was a little bit different group, but can you talk a little bit about … I’m sure this does affect some younger women. Is there a role for kind of preserving fertility or egg freezing or anything like that? And also, is there a role for genetic testing?

Chad Michener:  So fertility in younger women, we do try to preserve, in fact. And if it is, let’s say, a germ cell tumor, so a different form of ovary cancer, usually affects women in their teens, twenties, not so common after the thirties. Oftentimes, you can take one ovary out, do the biopsies for lymph nodes and things, and leave the other ovary. Oftentimes, do chemotherapy and then they’ll still maintain their fertility afterwards. There are some other things you can do. We’ll usually have them see one of our infertility experts and talk about either protective drugs for the ovaries during chemotherapy or we do offer them the potential to go through a cycle of intro vitro fertilization, freeze eggs, freeze embryos if we think they have time for that. Or sometimes I’ll actually harvest and freeze part of the ovarian tissue as well. So that would be that group.

It’s harder to do in people with advanced disease, obviously, because they’ve got disease covering a lot of areas. So typically, we won’t recommend fertility preservation in that specific sense. But sometimes we’ve taken out ovaries, left uterus behind if the uterus doesn’t look involved, and then there’s ways to do donor eggs and things like that for fertility in the future if they do well. The second question was genetic testing. And for that we actually offer genetic testing to all of our women with epithelial ovarian cancer, so the more classic ovarian cancer that we talk about, because about 20% to 25% of people will have some gene mutation in their family.

And that becomes important for two reasons. One is that that can be passed on about half of the time, so with each pregnancy there’s a 50% chance of passing that gene on. And then secondly is we actually utilize that as part of our treatment now with a group of drugs called PARP inhibitors, and those are oral medications that are taken either with or most times following chemotherapy, and they have a specific function in patients with BRCA mutations or similar mutations. And so it becomes an important part of the treatment paradigm for those patients as well.

Scott Steele:  What if you have a woman out there that says, “Listen, I don’t get this because I get a yearly pap smear.”

Chad Michener:  Yeah, that’s a common misconception. I think that people think they’re getting checked for this all the time when they go for their pap smear, and pap smears are really meant to look for cervical cancer and that’s it. It is true, once in a while we’ll find either a fallopian tube or and ovarian cancer or even sometimes an endometrial cancer, but it’s not designed for that. In fact, most people who have endometrial or ovarian cancer have a normal pap smear at the same time that they get diagnosed. So it’s not really for that.

Also on pelvic exams, sometimes people don’t have large masses. So they can have lots of disease scattered all over the abdominal cavity, and the ovaries can actually feel quite normal. And that’s because we lump ovarian cancer in with something called fallopian tube cancer, but also with one called primary peritoneal cancer where the majority of the disease is in the lining surface of the abdominal cavity, but really doesn’t involve the ovaries much at all. And so you can have normal exam and then three months later show up with bloating, nausea, and then be diagnosed with ovarian cancer.

Scott Steele:  So what’s on the horizon for the treatment or diagnosis of ovarian cancer?

Chad Michener:  So the Holy grail would be screening, right? So we don’t find it early. So if we could find a great screening test where we could find patients in early stage, it’d be wonderful because survival rates for stage one cancers are actually pretty great. The problem with finding it late is that survival rates aren’t as good. And so the research is been looking for a new marker for a long time. As I said, CA 125, not really that specific, so you can’t use that to screen kind of a normal population of women because there’s a lot of what we call false positives. So people get a positive test, they don’t actually have ovarian cancer, they have anything else. Inflammation of anything in the abdominal cavity or in the chest can cause that number to go up. So that’s one of the big things that lots of people are pushing for.

On the treatment side, I think everything is going, as with most cancer, to targeted therapies, things other than chemotherapy. And so hyperthermic chemotherapy, it was one of them, and I think that’s still a work in progress. We’re still trying to figure out how to fit that in. And then with targeted therapy, most of our trials now contain not only chemotherapy but either PARP inhibitors, other targeted inhibitors, and actually sometimes immunotherapy or a combination of those. So that’s where all the research is going currently.

Scott Steele:  Well, that’s fantastic stuff, and we’re glad to have you here. This one hits particularly close to home as my mother passed from it. So, Chad, we are going to just kind of wind up with a few quick hitters for you. So what’s your favorite sport?

Chad Michener:  Gee, I would say college football to watch. To play, I like to run as my primary mode of activity.

Scott Steele:  Favorite meal?

Chad Michener:  I would say steak, believe it or not.

Scott Steele:  And what’s the last nonmedical book that you’ve read?

Chad Michener:  The last one I read was a book called Driving Miss Norma, which was actually interesting, about a cancer patient. And we had visitors here at Cleveland Clinic that were the authors of that book, and they took their 90-year-old mother around the country in an RV and did a lot of visiting things for a lady that actually had an endometrial cancer, so an aggressive form. She chose that over doing treatment for her cancer, but kind of a fun read, a lot of things that they did, a lot of pictures. So that was actually a really fun, great book.

Scott Steele:  Fantastic. And tell us one thing you like about being here in Cleveland.

Chad Michener:  The thing I loved about being here, I did my fellowship here and actually chose to stay because there’s a lot of collaboration here. And even since I started 15 years ago, the Cleveland Clinic has grown tremendously. There’s a lot of great relationships here, a lot of colleagues that I work with frequently. And so I thought it would be a great place to work from a family standpoint. Cost of living is great, as you know from living here. And there’s really a lot of stuff to do, so it actually is quite a fun city to be in. And so we’re super glad that we stayed.

Scott Steele:  Well, that’s fantastic. And so for more information about ovarian cancer, please download our guide by visiting Cleveland Clinic.org/G-Y-N-O-N-C, that’s Cleveland Clinic.org/gynonc. And to make an appointment with a Cleveland Clinic specialist, call (216) 444-6601. That’s (216) 444-6601. Chad, thanks for joining us on Butts & Guts.

Chad Michener:  Right. Thanks, Scott. Appreciate it.

Scott Steele:  That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains

Overall Health and Mindfulness Improves Treatment Response: An Expert Explains from Patient Empowerment Network on Vimeo.

Dr. Sangmin Lee shares the benefits of meditation and yoga and explains how mindfulness can affect your overall health.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

How about this one? A positive attitude and mindfulness can improve treatment response.

Dr. Lee:

Absolutely. Absolutely. Treatment for leukemia can be tough. Some of the treatment involves intense chemotherapy. Treatment for leukemia can involve stem cell transplant. And a key important aspect of treatment is being healthy and being optimistic about treatment, because a lot of treatment can have side effects, and side effects can be not as apparent if you are physically more active, and in a good state. So, I think that having a positive outlook is very, very important.

Patricia:

Quality of life issues are difficult for some people. How do you talk with your patients about their quality of life, and staying healthy during their treatment?

Dr. Lee:

So, quality of life is absolutely important. I mean, the whole point of treating leukemia and any other treatment is not only to address the leukemia, but also have good quality of life. So, when discussing treatment options, you always have to balance the quality of life and side effects versus potential benefits. So, that’s always on our mind when discussing potential treatment options, and how it impacts the quality of life. Throughout the treatment process, we always tell our patients that being active, and having a good quality of life, and having good nutrition, is absolutely important, because that’s a key aspect of treatment for leukemia.

Patricia:

What about meditation and yoga for coping with anxiety around cancer diagnosis and treatment? Mindfulness.

Dr. Lee:

Absolutely, absolutely. Those can help. Especially having leukemia, it’s very life-changing, so a typical way that patients are diagnosed with acute leukemia is patients live a normal life, and then they develop, all of a sudden, abnormalities. And they’re diagnosed with acute leukemia, and it can be very sudden. And it can be very difficult. So, that can understandably make patients have anxiety, and other issues.

And I believe that meditation, and yoga, and other exercises can absolutely help cope with this.

Patricia:

And there’s tons of resources for meditation and yoga out there, that are reliable.

Dr. Lee:

Yes. Yeah.

Patricia:

Yeah. Should patients regard yoga and meditation as part of their treatment, as part of their self-care, during this process?

Dr. Lee:

Absolutely, absolutely, if the patients are into meditation and yoga. Meditation is very harmless, and it can absolutely help in terms of guiding their mind through their treatment journey. Yoga is good if you’re physically able to do it. So, one caution is that, if you’re not someone who does yoga normally, then you should start off slow, and not push yourself as aggressively.

Does Cannabis Oil Have a Role in Cancer Treatment?

Does Cannabis Oil Have a Role in Cancer Treatment? from Patient Empowerment Network on Vimeo.

Is it just a trend or could cannabis oil truly have a role in cancer care and treatment? Dr. Sangmin Lee share his perspective.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

The use of cannabis oil is becoming prevalent. Does this have a role in cancer care and treatment?

Dr. Lee:

Absolutely. So, we use it for a lot of side effect management. So, cannabis can be helpful, in terms of appetite and nausea, for example. So, we often use it in conjunction to manage some of the side effects that patients can have throughout their treatment.

You should consult with your medical team, and of course, I should say that laws differ state by state, so it doesn’t apply to every state. But when it’s available, it can be a valuable addition.

Patricia:

Sure. Discuss that with your physician.

Sugar Feeds Cancer: Fact or Fiction?

Sugar Feeds Cancer: Fact or Fiction? from Patient Empowerment Network on Vimeo.

Does sugar feed cancer? Dr. Sangmin Lee addresses the rumored connection between sugar and cancer.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

Okay, a little more fact or fiction, here. This is what we’ve heard from patients who have AML about cures, okay? Sugar feeds cancer, and severely restricting my diet will treat my AML.

Dr. Lee:

That’s not proven so far. There are some laboratory studies, especially with keto diets, showing some promise, maybe. But then it hasn’t been proven in humans, yet. The most important thing about AML treatment is actually nutrition. As patients go through AML treatment, it’s very important to stay healthy, and part of that is nutrition.

So, starvation, in general, is not recommended, because nutrition is so important, in terms of being able to undergo the treatment, as well as treatment visits, and everything. So, we recommend that nutrition is very important.

Are Clinical Trial Participants Monitored More Closely?

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Dr. Sangmin Lee discusses the monitoring of clinical trial participants and the measures taken for patient safety.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

How about this next one? I am monitored more closely in a clinical trial.

Dr. Lee:

In some cases, it’s true. Clinical trials do have certain monitoring visits, in terms of doctor’s visits, laboratory tests, and physical exams.

The purpose of that is to make sure that it is safe. So, the purpose of monitoring closely, in a lot of cases, is for the patient’s safety. We are testing drugs in a lot of clinical trials, for which the complete safety profile, as well as efficacy profile, is not known. So, the purpose of closer monitoring is to make sure whatever we’re doing is safe, and if there are any unexpected side effects, then it allows us to address the side effects, as well. So, it’s mainly for patients’ safety.

Will Clinical Trials Cost You? The Facts.

Will Clinical Trials Cost You? The Facts. from Patient Empowerment Network on Vimeo.

Dr. Sangmin Lee reviews the financial impact associated with clinical trials, including a discussion of what expenses are covered for participants.

Dr. Sangmin Lee is a hematologist-oncologist specializing in blood disorders and blood cancers at Weill Cornell Medicine and New York Presbyterian Hospital. More about Dr. Lee here.

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Transcript:

Patricia:

All right, how about this one: I may have unexpected costs if I join a clinical trial.

Dr. Lee:

So, typically, that’s actually, usually not true, because how it works is that the clinical trial drugs, and that there may be extra procedures or visits associated with clinical trials.

And what usually happens is that the sponsor of the clinical trial provides the cost of the drug, intervention, and anything extra that are required for the clinical trial. So, in the end, the cost of participating in a clinical trial should not be any more than receiving standard care treatment.

In some rare cases, there may be stipends associated with the clinical trial, especially with travel. So, if you participate in a clinical trial, and you live far away, then you should ask to see if there is any stipends available, especially for travel.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

5 Lessons Learned from an Ovarian Cancer Survivor

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. 


marcia-photo

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.

The Effects of Chemo and Ovarian Cancer

Real patient experiences shared privately at Treatment Diaries. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.


Had my first chemo January 20th. LOVE the pre-chemo “cocktail” they give. Relaxed me so much I slept through most of it. First four days after were fine. Next four, lots of nausea and threw up a few times. Doctor added two more anti-nausea meds and finally got it under control.

Using two chemo drugs; Carboplatin and Taxotere.

Two weeks after the first chemo my hair started falling out. Nausea and vomiting I can handle. Being tired a lot I can handle. Fingertips tingling I can handle. Hair falling out by the handful……..that was just demoralizing!

I put up with it for two days. Then, we shaved my head. I do mean WE. Went into work and sold raffle tickets. Winning ticket pulled got to shave my head! It was hilarious! Got pictures and lots of video. Plus, raised $322 to help with expenses, which I really needed.

My “work son”, Andrew, was the winner. Worked out good that way, I think. His mother is going through chemo for breast cancer, started losing her hair and shaved her head. He was having a hard time dealing with that. Shaving my head seemed to give him a new perspective.June TD quote

I freely admit, if I’d shaved my head at home by myself, I’d have bawled my eyes out the whole time. But, doing it at work made it easier. Everyone was cracking jokes and laughing….it was more like celebrating a milestone than doing something that was a reminder of something bad.

One thing I’ve noticed is that the “stubbies” don’t fall out as easy once they die as full strands do. Then, when I put on a scarf or hat, they get shoved down in the hair follicle and it’s uncomfortable. BUT, I found a great fix for it: LINT ROLLER! Yes, after my shower, I stand in front of the mirror and take a lint roller to my head. And laugh myself silly the whole time!

Turns out, I don’t look bad bald. So, I’ve opted not to bother with a wig. I use a scarf or hat outside, but go au natural indoors. And, I have to admit, I love how much time I’m saving in the shower! Especially on the days when I have no energy!

Second chemo was February 10th. Used my chemo port for the first time as well as an IV. That was interesting. And they gave me some kind of IV anti-nausea meds since the first dose hit me pretty hard. Worst side effect this time was that it messed with my taste buds. For about 10 days, all I could taste was sweet stuff. Couldn’t taste meat or spicy anything. Talk about frustrating! Grrrrrrrr!!!!!!!

Took the long way home afterward. Was stopped right next to a police officer at one light. He had about as much hair as I do right now. So, he’s looking over at me, I’m looking over at him…..we both were grinning at each other. Very cute moment.