MedStar Health Blog

Love and Luck

My life has been overflowing with Love and Luck, and never more so than since my surprise diagnosis of advanced ovarian cancer on March 12, 2001, at age 45 years, five months and 19 days.

Although my 68-year-old mother had died of advanced-stage ovarian cancer exactly five months earlier, on Oct. 12, 2000, there was no other history of ovarian cancer in my family. We are not carriers of the infamous mutated BRCA genes (go ahead, Google Angelina Jolie!), which, when in good working order, protect against ovarian and breast cancer. When those genes are damaged, they no longer offer protection, and the chance of a woman being diagnosed with ovarian or breast cancer is as high as 80 percent. In my case, with no BRCA mutation, we simply don’t yet know what we don’t know.

Despite decades of research for an effective and inexpensive screening test for all women as part of an annual checkup, there is no screening test for ovarian cancer. No simple blood test. No scan. No X-ray.  No test like a Pap smear, which is so effective for diagnosing early-stage cervical cancer.

That someone like me – who was carefully monitored during my mom’s nine-month illness – could be diagnosed late stage should be very disturbing to anyone who is a woman, or who knows a woman. And, that would be everyone, right?

Surviving Cancer

Luck has been my buddy for more than 15 years of my healthy survivorship. I have no clue why I obliterated the odds of surviving five years, much less 15. A vegetarian for five years before my diagnosis, I craved bacon during chemo, caved to the temptation, and have never looked back. I have come to believe bacon goes with everything.

I love the “love” in my beautiful Love and Luck duo, because I have been blessed beyond measure with a husband who has had my back at every turn for way longer than 15 years, and especially since that fateful diagnosis day. Too many people suffer the emotional loss of a spouse or partner who simply “can’t handle” illness and survivorship. I say, if they think they can’t handle it, they should step into the shoes of those going through it and imagine how hard it is. Lucky me, to have him.

My survivor sisters, well, where would I be in my survivorship journey without them? I joined an online support group when Mom was diagnosed, to get tips and tricks from survivors to help her. When I returned to the group on my own behalf, I was welcomed like a long-lost daughter. Survivors meet every year at the Ovarian Cancer Research Fund Alliance conference, and a core group of us have become close friends, even choosing to vacation together annually for a long girlfriend weekend. We have a blast when we reunite. We are stronger together.

We urge one another to stay active in ovarian cancer education and advocacy, from sharing our diagnosis stories with third-year medical students (Survivors Teaching Students: Saving Women’s Lives®) to being the survivor voice on government research and funding projects. We long-termers must stay involved, to give hope to women and to keep the pressure on for early detection and a cure.

I am lucky I now am old enough to feel the “joys” of an aging back, wrinkle my nose in disgust at age spots, and wonder when those fine lines around my eyes appeared.

I would love to know my secret survival sauce, because I would bottle it and give it away.  I would send it to my two sweet and courageous friends who now are in hospice care at ages impossible to imagine. And, I would leap back in time and gift it to Mom and the countless friends whose love was so important to me before they were lost to ovarian cancer.

Symptoms of Ovarian Cancer – Sort Of

A woman should have a thorough gynecologic exam by a gynecologic oncologist if she experiences one or more of the symptoms listed for more than two weeks and are unusual for her. Please note, many women are diagnosed without having any symptoms. But, without a screening test, this is the best we have. Be vigilant!

• Bloating
• Feeling full quickly after eating
• Pelvic or abdominal pain
• Urinary symptoms (urgency or frequency)

A Snapshot of Ovarian Cancer (Source: National Cancer Institute)

• Ovarian cancer accounts for approximately 3 percent of all cancers in women.
• Ovarian cancer is the fifth leading cause of cancer-related deaths among women in the United States.
• Approximately 22,000 women are diagnosed with ovarian cancer in the U.S., and approximately 14,000 will die of the disease.
• 75 percent of ovarian cancer is diagnosed at the advanced stages of III or IV, when it is harder to cure.

Additional Resources:

Visit www.ovariancancer.org (Ovarian Cancer Research Fund Alliance) or www.ovarian.org (National Ovarian Cancer Coalition).

(PHOTO AT THE TOP): The author and ovarian cancer survivor, Annamarie DeCarlo (second from left) with three other survivors at the 2016 National Ovarian Cancer Coalition conference in Baltimore, Md.

If you have been diagnosed with prostate cancer, surgery might be the best treatment for you, especially in younger men less than 65 years old who have higher risk disease and overall good health. But, before you undergo an operation, you need to feel confident that you are using a surgeon you can trust.

Read on to learn what factors you should consider, as well as what you should avoid, when choosing the right prostate surgeon.

Factors You Should Consider

When it comes to choosing a prostate surgeon, experience is the primary concern. While there is no "magic number" of years a doctor needs to have practiced necessarily, one who has performed prostate surgery hundreds of times is better able to put your mind at ease than someone who does not perform prostate cancer surgery very often. A doctor who has had extra fellowship training focusing on prostate cancer treatment is beneficial, too.

Additionally, a multidisciplinary team can help you get the best treatment. Since the decision between surgery and radiation is not always black and white for patients, the surgeon you choose should offer a consultation with a radiation oncologist to determine if radiation is the better option.

Red Flags to Avoid

First and foremost, avoid a surgeon who seems to push or market the surgery they offer. Also, if they say they can do the surgery tomorrow or next week, it’s probably because they are not very busy and don’t do many surgeries.

It is always wise to ask the doctor about patient outcomes. If the surgeon cannot answer or doesn’t know, this is a concern. It indicates that they do not engage with patients enough during their journey beyond treatment, and are not following their own outcomes. In short, these surgeons simply can’t know what they don’t know. Similarly, if you meet with a doctor who quotes outcomes that seem too good to be true, they probably are.

For example, if a surgeon claims that 95 percent of all patients have no trouble with erectile function after surgery, he is probably not giving you an honest or realistic picture of typical outcomes, or outcomes specific to your condition. They may only be considering young men with low-risk disease and good preoperative erectile function, who also have bilateral nerve sparing to preserve erections.

These patients realistically only consist of about half of men seeking treatment.

Why Your Prostate Surgeon Choice Matters

Prostate cancer surgery is not a procedure that can be done well by just any surgeon, especially when it comes to preserving your long-term health. Nearly any urologist can remove the prostate safely, but there may be side effects that reduce quality of life in the long run. For example, surgery can not only affect erectile function, but it can also disturb urinary function, depending on the surgeon’s skill.

So don't let the pressure of a prostate cancer diagnosis rush you through this decision-making process; take your time and make the right choice. See as many practitioners as you can to explore all of your treatment options and gather as much information as possible before you get prostate cancer treatment.

Also, remember that there is a lot of misinformation about prostate cancer out there. For example, a common misconception heard in our clinics is: “I didn’t think prostate cancer could kill me."

This is simply not true, as it remains the second leading cause of cancer death in men. It is, however, generally slow-growing if caught in time. So there is time to make the correct decision for you, which may even be no treatment at all.

While prostate cancers may be slow-growing — which is why you don’t need to make a treatment decision in one day — avoiding treatment altogether is not recommended without expert guidance and input from a trained doctor or surgeon. At the same time, some low-risk cases require no treatment at all. So do your research and be mindful of your choice in prostate surgeon, and you'll increase your chances of positive outcomes.

Hearing a cancer diagnosis can bring on a flood of conflicting emotions. Shock, numbness, anger and confusion about your next steps. There are more than 14 million new diagnoses each year, and many patients are unsure about what to do - questions can range from how to break the news at home to what to expect during treatment.

At MedStar Georgetown Cancer Institute, nurse navigators are the healthcare providers who help with those questions and support patients at every step of their cancer journey. Helping patients see the big picture and keeping track of the small details is also an essential part of the role.

Why Are Nurse Navigators Crucial to Quality Care?

When you receive a cancer diagnosis, it's easy to feel overwhelmed by your options. Surgery, medications, radiation, and other treatment options may be presented to you. A nurse navigator can help you understand your choices and provide detailed information about the behavior of a specific cancer. By understanding cancer staging and how treatment works, you can make more informed decisions about your treatment.

Every cancer treatment regimen should be tailored to fit the individual; nurse navigators explain and address that necessity. We can even provide translation services to help eliminate any language barrier, should the need arise. And if making appointments is tough, transportation services might be available. Many secondary services can help you get the most out of every appointment.

During your first visit with your cancer treatment team, you get a lot of information - so much so, that it may be easy miss details, and you may have questions. That's where a nurse navigator comes in; they can help you figure out the best resource for any questions and offer suggestions about what to ask. In fact, part of the new patient process as a nurse navigator involves providing patients with valuable information, as well as potential questions to ask.

That is only the beginning of your journey, however. You may not have a lot of knowledge about cancer or what happens after treatment. Long-term surveillance is a big part of optimizing function and longevity, as well as monitoring risk of cancer recurrence. Helping you understand what to report and the support that is available at the end of treatment is a rewarding part of the role.

Nurse Navigator's Network

Navigators do more than answer questions and provide information; they also assist you in ensuring your critical records and information is available for the physician’s review prior to discussing your treatment plan. For example, you may not know what documents are most critical for a specific appointment, but a nurse navigator can help you with the scheduling and documentation needed to keep quality of care high and coordinated across the team supporting you.

As a patient resource, nurse navigators are there to traverse all disciplines and provide knowledge from a perspective inside the medical center. They help guide and shape your journey so you can make treatment decisions with all the information you need readily available.

Prior to his diagnosis, Steve L. was a man who lived life to the fullest. He loved his family, as well as his successful career as an IT specialist; he also enjoyed a healthy, active lifestyle. That all changed, however, on March 7, 2014, when he noticed a lump in his neck. Understandably concerned, he began to seek out medical advice.

Three days after he discovered the lump, he went to see his internal medicine doctor. He was scheduled for a CT scan the following day and was sent to a specialist for a fine-needle biopsy.

Then the doctor that performed the fine-needle biopsy delivered the bad news: Steve had neck cancer – not only that, it was the worst possible type, in his opinion. And when Steve asked if he should retire to enjoy what remained of his life, his doctor said yes.

It Was Time to Seek a Second Opinion

After his initial diagnosis, Steve was referred to an ear, nose and throat specialist who was a frontrunner for conducting the necessary surgical procedure. Despite the fact that Steve was disappointed by the doctor's bedside manner, he booked the surgery, not wanting to waste time.

In retrospect, Steve advises, "Definitely bring a family member to go with you to some of those appointments. You're pretty much preoccupied with the worst thing about it, so you've got to keep your head about you when you're in with these doctors."

Steve’s sister, who had accompanied him to the appointment, felt he should seek a second opinion. So she connected with a doctor who immediately contacted MedStar Georgetown University Hospital. Not long after, Steve had an appointment set with Bruce Davidson, MD, chairman of the Department of Otolaryngology-Head and Neck Surgery at MedStar Georgetown University Hospital.

Renewed Hope for Recovery with Dr. Davidson

Dr. Davidson biopsied the tonsil lump, but at the time of surgery, pathology did not find any cancer, so he proceeded with a neck dissection to remove the known cancer in the lymph node.

“These cancers that present in lymph nodes in the neck are called Cancer of Unknown Primary,” says Dr. Davidson. We try hard to identify the original cancer and usually it is in the tonsil or the base of tongue. In this case, we could not identify the cancer on biopsy. In fact even when we pursued tonsillectomy, the cancer was too small to be seen on pathology at the time of surgery. It was only found after further careful study by the pathologist.”

During the neck surgery, Dr. Davidson removed approximately 40 lymph nodes from Steve's neck and discovered cancer in only one of them.

The team then removed Steve's tonsils. There was no obvious tumor in the tissue removed. However, when the tonsil tissues was comprehensively evaluated by pathology, they did indeed find cancer in the left tonsil.

So with a small cancer in the primary and a single lymph node, surgery alone can be curative. However, a wider resection around the tonsil area would be required in order to avoid the need for radiation therapy. Steve went back to Dr. Davidson, who proposed a radical tonsillectomy on the left. After his surgical treatment, Steve has done well. He has undergone PET-CTs for two years. Each time, the results have been negative.

Reflecting on His Treatment and Looking Forward

Today, Steve is in good health once more. "So far, I've been very happy with what they've done. I've lost no mobility.”

As a survivor of throat cancer, Steve has learned a thing or two. "Definitely take your pain meds," he advises, "I learned that one the hard way very early on. If you're in pain, you're going to heal slower."

Most of all, Steve stresses the importance of cancer patients finding a doctor they like and trust. "Don't be afraid to fire your doctor," he says. "Don't be afraid to research your doctor.”

While Steve eventually found his way to Dr. Davidson, the beginning of his diagnosis was rocky, and he credits Dr. Davidson with being a thorough, meticulous professional. "He's a very brilliant man.”

“Cancers of the throat are increasing,” Dr. Davidson notes. “Many of these are in individuals like Steve, who are in the prime of life. While some of these tumors are treated with surgery and radiation and others are treated with chemotherapy and radiation, his case demonstrates a successful treatment using surgery alone.”

Thanks to Dr. Davidson, Steve is looking forward to the many years of good health and great times that lie ahead.