MedStar Health Blog

It started as a nagging thought, back in November 2012. I just didn’t feel like my usual self, but I couldn’t define why, precisely. Little things crept into the cracks of my well-being and seemed to erode my vitality. I developed shortness of breath when I was climbing stairs or working out, but my breathlessness was a little more pronounced than usual. I started having episodes of high blood pressure. That seemed odd to me since I was only 52 and an endurance athlete at the time.

I have always been in tune with the deep, inner signals of my body and very aware of “doing the right things” for my health. So I guess I knew something was wrong. But denial can be a powerful force.

The Bleak Outlook of Diagnosis

One of my strongest recollections of that period of time between symptom onset and my diagnosis was an evening out with my girlfriends in mid-April 2013. They were worried about me, worried that I didn’t seem to feel myself. Of course, I had no explanation for them. I remember our conversation that evening vividly. I tried to describe an “overwhelming sense of un-wellness.” I’ll remember those words forever. Just a week later everything came crashing down. My pillar of denial lay in rubble at my feet.

When I got my diagnosis, I felt like I was sitting in my living room and someone pulled the rug out from underneath both the furniture and me, sending everything that anchored me flying into the air. What came down wasn’t me, or my furniture; it wasn’t even my living room. It was my life. My doctor told me that a CT scan had found a mass in my chest.

I heard the words that terrified me: “You have thymic carcinoma.”

"Okay, stop right there," I said to myself. "I know I didn’t just hear that."

Moments of incomprehensible shock and disbelief followed. How ironic that I actually had prayed for lymphoma. That type of cancer is at least usually treatable. But as luck and fate would have it, my doctor told me that thymic cancer is very rare and usually very aggressive.

“Thymic tumors are rare and understudied,” says Giuseppe Giaccone, MD, Ph.D. “Moreover, there is a clear distinction between the different types of thymic tumors and the most aggressive form, thymic carcinoma – which only represents about 10 percent of all thymic tumors (less than a 100 new cases each year in the United States.) Surgery is the mainstay treatment in thymic tumors, but this is often not possible in thymic carcinomas, because they are already in advanced stage when they are diagnosed. Chemotherapy is then the standard treatment, sometimes associated with radiation, but results are underwhelming, with survival rates in the range of five years.”

From Treatment to Clinical Trial

I found it difficult to stay positive about my prognosis since there was little doctors or specialists could offer at the standard cancer centers. What I did learn over the next two years was that if you need a big fish (which I certainly did), you have to go to the big ponds. As a result, I was able to do fairly well physically and mentally, despite many radiation treatments to various metastatic sites.

I participated in a clinical trial that bought me some time. I learned to live in the moment and not to project the future, or what the future might bring. I kept up on the latest advancements in diagnosis and medication and frequently asked about immunotherapy.

In December 2014, my hopes were realized. I heard about a new immunotherapy trial just for Thymic cancer patients at the Georgetown Lombardi Comprehensive Cancer Center. Dr. Giaccone was the primary investigator (author) of the trial. I was accepted into the trial, and my hopes of finding a durable solution to this disease were renewed.

”At the time, Shannon had a lot of disease in her body, but she was still in good condition and very positive spirit,” shares Dr. Giaccone. “She was a good candidate for a study with pembrolizumab, an antibody that targets the immune system by making it fight the cancer.”

"You Have No Detectable Disease"

Elation cannot adequately describe the excitement and joy I felt after just one treatment. My metastatic sites started to shrink. And in April 2016, I once again heard what I previously thought was impossible: “You have no detectable disease.”

These five words were equally shocking to my original diagnosis but in the most incredible and delightful way. Today, I am filled with gratitude and thanks not just for the blessing of physical healing but also for the restoration of hope.

For those with rare cancers my advice, like so many who fight this disease, is never to stop looking for the "next big thing." I took courage from my hours of research and from participating in clinical trials. Even though my first treatments were ultimately not the treatments, they were the bridge to the treatment that ended my cancer story. So never, ever give up. Persistence pays off.

Shannon's full story can be viewed here: 

After the initial shock of finding out that you have prostate cancer, you will probably think of multiple questions for the surgeon. A question we are frequently asked is whether surgery is the only course of action.

When surgery becomes the best option for removing prostate tumors, the next question typically is whether robotic prostate cancer surgery is an option what the risks are, and how long the recovery takes.

Robotic surgery is an innovative technique that can minimize bleeding, risk of infection and damage to surrounding tissues. Educating yourself about the benefits of robotic surgery may help allay your fears of the procedure, thereby reducing stress and worry, and enabling you to have a more positive treatment outcome.

The Risks of Traditional Prostate Surgery

The prostate gland is located in the deepest part of the male’s pelvis. This area is full of blood vessels and nerve structures that control sexual function. The prostate gland is also adjacent to the urinary sphincter, which controls urinary function. During traditional prostate tumor removal surgery, it can be difficult to identify the adjacent muscles, veins and nerves that tightly surround the prostate gland.

If these tissues, muscles or the sphincter are inadvertently damaged during surgery, it is likely that the patient will suffer from urinary incontinence or erectile dysfunction.

Robotic Prostate Cancer Surgery: Who Is a Candidate?

Robotic surgery uses tiny tools that can fit into a laparoscopic incision that is much smaller than the incision required for traditional procedures. The result is reduced ancillary damage to surrounding muscles and tissues, less bleeding, less chance of infection and a shortened recovery period. In fact, while recovery time from traditional surgery might require six to eight weeks, typically times with robotic surgery are about three weeks.

Not everyone is a candidate for robotic surgery. In fact, if you are like two out of three men diagnosed with slow-growing prostate cancer, you may not need surgery at all.

Factors that indicate viability for robotic prostate cancer surgery include:

• Being sexually active
• Having normal urinary function
• A life expectancy of 15 years or more.

Necessary Testing Before the Robotic Surgery

Your doctor will order a 3D MRI that uses the latest technology to identify the prostate gland, urinary sphincter, various nerves and blood vessels that surround the prostate gland. The MRI will provide an accurate view – or map – of the area in order to minimize collateral damage to surrounding tissues.

Doing Your Own Research

Your doctor can provide you with a name of a well-respected surgeon. Look for a surgeon with extensive experience in robotic surgeries and narrow your list to doctors affiliated with facilities that can prove consistent positive robotic surgery outcomes. Ask for data that specifically focuses on the facility’s success with this type of surgery. Most reputable facilities are happy to share this information with potential patients.

If, after your initial visit with the surgeon, you are still undecided about going ahead with the procedure, ask him or her for names of patients who have undergone this type of surgery and who have agreed to answer other surgical candidates’ questions. Being able to talk frankly with other men who have experienced the surgery might help to calm your fears.

Recovery From Robotic Surgery

Some types of slow-growing prostate tumors don’t require surgery at all. Instead, your doctors and specialists can actively observe them during regularly scheduled checkups. Other types of aggressive tumors may require traditional surgery. If your prostate cancer diagnosis and treatment protocol includes surgery, ask your surgeon if you are a candidate for robotic surgery.

In fact, if your prostate cancer is aggressive and threatens to spread to nearby organs or tissues, robotic surgery may be the best choice for you. The advantages of robotic surgery are many, including faster recovery and less downtime.

No one wants to have surgery, but take comfort in knowing that the latest technology enables you to have a shorter recovery time and less chance of potential side effects of the surgery.

Before becoming a nurse navigator, I was a patient myself forging my own personal journey with breast cancer. One of the individuals who helped me was a woman who shared some of her own personal experience with me during a preoperative scheduling appointment - she had also chosen breast surgery.

Being a nurse, having worked in the field for years, I know now it's different when you realize you'll be the one undergoing treatment. However, she understood what I was going through, and she came to see me while I was waiting for the results of my surgery.

She said, "I know you're anxious but we're here for you. Whatever news you get, you can feel good about what you've done so far."

That day was 17 years ago, and at the time, there wasn't as much available in the formal role of navigation.

How a Nurse Navigator Influences the Approach to Care

At MedStar Georgetown Cancer Institute, the nurse navigator is like a lighthouse showing people how to avoid rocks in a vast ocean. Not only am I able to tailor the care to my patient's needs, it's satisfying when I am able to link someone to a resource they didn't know was available. For me, a big part of the satisfaction is having patients know I'm not just there for the good times.

It can be a great comfort for our patients to know there are people who can hear those scary things you're worried about; it's okay to have that conversation. Even the people you love, like family members who are close to you, don't always know what to say.

And then there are those rewarding moments when a patient comes back to me with fantastic news. "I thought I might never walk again, but I'm walking now!"

What I Wish the Public Knew About Nurse Navigators

I think we're still helping people to understand the role of a nurse navigator. In fact, a lot of people — unless someone points them to it — don't even know such positions exist.

Nurse navigators have a great base of knowledge around the standard of care. They can help explain the big picture and the questions that arise. We try to get out in the community as many times as we can, at the level of prevention or early detection. We're there so patients can see and experience what navigation could mean for them.

Empowering People With the Knowledge They Need

My role is all about making sure the patient realizes the support that is available to them early on and across the team — even for the very first suspicious finding. We help to clarify what can be an overwhelming amount of information, helping people understand their specific situation to aim the right treatment plan at it.

We also educate them on how important it is to comprehend the behavior of their cancer. I often explain what cancer staging is, its importance and how easily cancer can be over- or undertreated without all of the necessary information.

I also try to give people the confidence of what's going on behind the scenes — anything they're not aware of, from their point of view. For example, letting them know that a number of specialists such as surgeons, radiation oncologists, medical oncologists, and imaging specialists collaborate to develop the best plan for them. They're looking at the patient’s scans together. They're trying to determine what is best in each individual case. It’s important for me to relay that type of information back to the patient.

The navigation role is very important in helping bring people back to the big picture of quality cancer care. And the patients I see need to know what their newfound situation will mean for their lives and how can they get in control once more.

Sometimes, there are different points in someone’s cancer journey that they have to stop and reevaluate next steps. It's nice for them to know that we'll be there for every stop along the way. And when they get to their next milestone, we'll be there for them, ready to answer their questions.