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Scott Hersh is a colon cancer survivor. His journey started in August 2012 when he was initially diagnosed with stage 3 colon cancer at 48 years old. His journey continued with metastatic colon cancer (stage 4) in September 2013 and a recurrence again in January 2016. Each time, he endured six months of chemotherapy and had two major abdominal surgeries - one in September 2012 and one in June 2014. He is currently halfway through his third chemotherapy tour of duty. He receives his treatment at Johns Hopkins Hospital and shared that he is extremely grateful for his dedicated doctors, nurses and their staff.

Thank You, Cancer

Although patients with metastatic breast cancer benefit from many factors including a multidisciplinary approach to care and thorough education to make treatment decisions, one of the most critical tools throughout this entire process is communication between patients and their care teams, an expert said.

 in Metastatic Breast Cancer, a panel of experts from Miami Cancer Institute in Florida discussed the space including information on initial and subsequent treatments, biomarkers and other areas that may be helpful for patients with the disease.

CURE also spoke with Dr. Jane Emilie Mendez, chief of breast surgery at Miami Cancer Institute in Florida, who chaired the event, to learn more about how information like this can be beneficial for patient outcomes.

“[Cancer isn’t] one street,” Mendez said in an interview with CURE. “It’s not your doctor wants to do this and that's that, because we need to know that we're keeping a balance between our efforts to cure you — at least keep your metastatic disease at bay — and your quality of life. … Even [if] we're keeping the cancer at bay but you're miserable with the side effects, what have we gained? … Ultimately, it's all about quality [of life].

Mendez added that multidisciplinary care that is often applied to patients with metastatic breast cancer is not “one size fits all.”

“We need to tailor the therapy to the specific characteristics of the tumor,” she said. “We have now so many ways that we can do that, either with tissue biopsy or liquid biopsy (with blood), tissue sampling, and how far we’ve come in terms of trying to better define all the subtleties about the tumors.”

With the identification of biomarkers, cancer teams can steer the treatment of patients with metastatic breast cancer in a direct that may be more effective.

“What are the characteristics within the particular tumor that the patient has that will allow us this ability to look for other potential treatments once they failed the standard and the minimally invasive [option],” Mendez said in an interview.

Even though treatment often starts with hormone therapy, which is minimally invasive and is often tolerated the best before systemic treatments, Mendez said, tumors may mutate over time. Thus, tumors should be checked periodically for any changes in biomarkers.

“It’s really more important to check that the tumor hasn’t mutated,” Mendez said. “And that will open the ability for us to find other potential treatments for the patient. It’s an ever-evolving trajectory. We cannot assume, and each patient is unique as well as their cancer. So those continued biopsies, when indicated, we see progression, that's our avenue for what else can we use.”

Knowing all of this information while navigating the treatment landscape of metastatic breast cancer is help so that patients can advocate for themselves and feel empowered along the way.

“[Patients should] know, if they're at a place that they're not seeing this type of activity or this type of [treatment] flow, they can seek out other opportunities so that they can get what's best for them, given their circumstances,” Mendez said. “At least be aware, because knowledge is power.”

Even with education, there may be a risk of overwhelming patients with information, some of which may also be misinformation.

“If [patients are] tech savvy, they can go to the computer, but a lot of [the information] might not be applicable to them, but be misinformation,” Mendez said. “And how do you know, as a patient, to discern what's real and what's not? And how do we, as people who are in the business, control that? Dr. Google is very famous, so that's a big problem that we have.”

In addition to misinformation, the educational material patients read should also be tailored to their educational level.

“There’s a lot of people who don’t even understand the word ‘cancer,’” Mendez said. “So how do you simplify that information so that they get it, and they can feel even that they have power with what’s happening to their body. It’s really hard.” 

Building Confidence to Discuss Side Effects

Patients have many members on their care team including the oncologist, the advanced practice provider (like nurse practitioners), a nurse and patient navigators, in some instances. As long as patients voice any concerns — no matter how big or small they may seem — to someone on that team, it should be then discussed with the member of the team who makes treatment decisions. 

Mendez said that patients should feel comfortable to discuss their side effects, ask questions and communicate with their team, even though some patients may be like to discuss their concerns than others.

“Not all patients have the same needs,” she said. “Some patients are very, very self-sufficient, and they'll be very vocal. It's more about the patient who doesn't want to impose upon the doctor. They feel that they would be bothering the doctor by calling. But in reality, if we don't know, we cannot do anything about it.”

Once made aware of any concerns, care teams may be able to help address them either with pharmaceutical modalities or even adjusting doses of the cancer treatments.

“A lot of these side effects occur not when you're at the doctor's office; they occur when you're taking the medication at home,” Mendez said. “You might be having dehydration. You might have diarrhea. You might be having fatigue. You don't want to do anything. You might be depressed. Whatever the reason might be, if we don't know, how can we change that or adjust the treatment to make it more palatable for the patient?”

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Effective communication between patients and care teams is crucial in managing metastatic breast cancer, alongside a multidisciplinary approach and patient education. Tailoring treatment based on tumor biomarkers is essential, as tumors can mutate over time, necessitating periodic reassessment. Patients should be empowered to advocate for themselves, but must navigate potential misinformation. It's vital for educational materials to match patients' comprehension levels. Patients should feel confident discussing side effects with their care team, as addressing these can improve treatment tolerability and quality of life.

Through communication and education, patients with metastatic breast cancer may be able to balance treatment with quality of life. 

Tumor

Navigating the ‘Ever-Evolving Trajectory’ of Metastatic Breast Cancer

Learning more about the different symptoms and treatment goals of myeloproliferative neoplasms (MPNs) can help patients be more involved in management decisions throughout the disease trajectory, an expert said.

“It's not just the doctor and the nurses; it's the person who has the disease [that] is the main person, so their involvement is very important,” said Dr. Swati Goel at the recent 

 in MPNs at Montefiore Medical Center in the Bronx, New York.

Goel is the Leader of the Myeloproliferative Disorder Clinic, assistant director of the hematology-oncology fellowship program and associate professor in the department of oncology and medicine at Montefiore Einstein in New York, New York.

Throughout the event, Goel discussed that there are three types of MPNs: polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis.

According to the National Cancer Institute, PV is when there are too many red blood cells in the blood and bone marrow, resulting in thick blood. The number of platelets and white blood cells may also increase with this condition. This may also lead to an enlarged spleen from the extra blood cells that collect in the organ, in addition to bleeding issues and clots in blood vessels.

With ET, patients have an increased number of platelets called thrombocytes in the blood without a known cause.

“The bone marrow produces too many platelets, and it leads to increased platelets in [the] bloodstream,” Goel said during the event. “The main thing we worry about [is] that this increased platelet [count] can lead to increased blood clots. There could be bleeding problems.”

She also noted the enlarged spleen in patients with ET, especially as it regulates the amount of blood cells in the body. Patients with ET may also have an increased risk for stroke, heart attack and circulation issues in extremities. Other symptoms that may be present include dizziness, headaches or vision changes.

Several factors may increase the risk for complications from ET such as genetic mutations, advanced age and, very rarely, exposure to certain chemicals like benzene.

Myelofibrosis refers to a disorder when bone marrow is replaced by fibrous tissue. Goel noted that myelofibrosis is a little different than PV and ET, as it may also result in the production of too few cells in addition to too many cells in the bone marrow.

“The word ‘fibrosis’ means stiffness,” Goel explained. “So instead of being like spongy, nice marrow inside our bones, the myelofibrosis causes the stiffness. And when the bone marrow is stiff, it’s not able to produce the blood cells as it’s supposed to, and this, in turn, can lead to complications. So this causes scarring or the fibrosis in the bone marrow, and it disrupts the normal blood cell production.”

Primary myelofibrosis can be a result of the same genetic mutations as ET — JAK2, CALR and MPL — whereas secondary myelofibrosis can occur from progression from other blood disorders. Of note, Goel added that the mutations associated with myelofibrosis may happen over time.

“People are not born with these mutations,” Goel said. “They happen at some point in life, and this is not caused by smoking or other things.”

Common symptoms of myelofibrosis include fatigue, shortness of breath, abdominal pain and fullness from spleen enlargement, night sweats, fever, bruising or bleeding, weight loss and bone pains, among others.

“Bone pains are not [like] arthritis pain, like knee pain or joint pain,” Goel said. “It is pain inside the bones, like a different type of bone pain.”

During the event, one participant asked whether ET or 

“There’s a small proportion of patients with ET or PV who can progress to myelofibrosis, as it’s the same mutation which causes all three diseases,” she said.

Progression from ET or PV to myelofibrosis would be noted upon the onset of symptoms or via monitoring from your care team with blood counts.

“We don't offer bone marrow biopsies if someone is doing well with PV or ET,” Goel said. “We don't offer them routinely, or let's check if there's fibrosis there or not. Usually, if there are symptoms or change in blood counts or something else, then we offer them. Even in the context of clinical trial, we might do it, but it's mainly symptoms and blood counts.”

Depending on which disorder a patient has, there are different goals of treatment. For example, for patients with PV, the main goal of treatment is to reduce the risk for blood clots, manage symptoms, control red blood cell counts and prevent complications such as strokes or heart attacks, Goel said.

Although somewhat similar, the goal of ET treatment is to control platelet counts, lower the risk for blood clots, manage symptoms and potentially prevent progression to “more serious conditions,” Goel said.

For patients with myelofibrosis, the goal of treatment is to improve blood cells, decrease symptoms, slow disease progression, improve survival, improve quality of life and reduce the spleen size.

“Many times, the spleen is big because the bone marrow is not functioning,” Goel explained. “The spleen starts producing all these abnormal blood cells.”

Patients with serious conditions may undergo a bone marrow transplant, which Goel said is a “cure in a way.”

“[This means] you get the transplant from someone else, not your bone marrow, which is very invasive and can be a lengthy procedure, but we do it in serious conditions,” she added. “But many times, we don’t need the bone marrow transplant because we can effectively manage the disease with treatment, with the regular monitoring, with trying to maintain the blood counts and have a very good quality of life for years or even decades.”

As MPNs can present in many ways in patients, treatment plans are typically personalized, Goel said. She noted that the most commonly used medication is hydroxyurea to reduce blood cell production. Interferon alfa, which is an injection given every week or every other week, may also be administered to patients. Goel also mentioned a new class of medications called JAK inhibitors to treat MPNs. Low-dose aspirin may be used to reduce the risk for blood clots in patients with ET or PV.

“Even though it might seem like, ‘It’s just baby aspirin,’ it can change the life of someone who had a devastating stroke versus preventing it.”

Understanding the symptoms and treatment goals of myeloproliferative neoplasms (MPNs) empowers patients to actively participate in their care. MPNs include polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis, each with distinct characteristics and complications. Treatment aims vary, focusing on symptom management, reducing risks, and improving quality of life. Personalized treatment plans often involve medications like hydroxyurea, interferon alfa, and JAK inhibitors. Bone marrow transplants are considered for severe cases. Patient involvement and regular monitoring are crucial for effective disease management.

An expert explained the importance of education and involvement in care for patients with myeloproliferative neoplasms. 

Education on MPN Symptoms, Treatments Leads to Greater Involvement in Care

When I first received my diagnoses of Lynch syndrome and CHEK2, I had no real frame of reference for what it meant in my day-to-day life or how I could take control of my risk. However, this changed when I found the Facing Our Risk of Cancer Empowered (FORCE) website — the realization that I was not alone in this journey opened the door to a wealth of helpful resources and a sense of empowerment.

For anyone navigating hereditary cancer risk, the path for us is far from straightforward. Nevertheless, the support systems available through organizations like FORCE and other online groups can provide deep comfort and relief: from making decisions about surgeries to dealing with medical gaslighting or coping with scanxiety. Add the emotional toll of changing your lifestyle to support risk reduction, and you have a lot to carry. But with this community, I never felt like I had to do it alone.

Together, we ask or give advice, share resources and provide encouragement for the tough days (like facing your next colonoscopy or awaiting biopsy results). This connection has been invaluable — without it, I genuinely don't know how I would have managed all the ups and downs that come with being a previvor.

Living as a previvor presents its own set of concerns, but knowing my genetic risks allows me to approach those challenges with greater preparedness. While I've had my scares since learning about my mutations, each time I've faced a medical concern, I've done so with the understanding that my awareness has likely saved me from a much more challenging future. Being able to identify and manage risks early has given me a profound sense of control over my health that I never thought possible when I first received my diagnosis two years ago.

One of the biggest lessons I've learned since then is the importance of sharing our stories. Early on, I realized that many people felt hesitant or even ashamed to talk about their experience as a previvor. But there's no shame in being proactive about your health. Through my advocacy work and podcast, “The Positive Gene Podcast,” my goal is to help others feel empowered over their hereditary cancer risk. I share with my listeners that we don't have to live in fear of our genetic predisposition — we can make informed decisions, ask tough questions, find uplifting communities and take steps to reduce our risk. There's power in knowledge and even more power in the connections you build with others going through the same thing.

When it comes to navigating hereditary cancer risks, having the right support, education and a bit of resilience really makes a difference. These tools help us feel more in control and proactive, allowing us to manage our risk and still find ways to thrive, even when things feel a bit scary.

I am grateful to have found my previvor community and to have the opportunity to give back by helping others find their voice and feel empowered over their hereditary cancer risk. If you're managing a hereditary cancer risk, talk to your medical team about the resources and screenings available to help you stay proactive in your health journey. If you're unsure of your risk, consider speaking with a genetic counselor to discuss options for testing and prevention.

This story was written and submitted by Sara Kavanaugh. The article reflects the views of Kavanaugh and not of CURE®. This is also not supposed to be intended as medical advice.

My path as a previvor is far from being straightforward, but having available resources and support has helped me along the way. 

Lynch Syndrome

Path to Previvor: My Journey from Diagnosis to Advocacy 

There were several updates in the field of kidney cancer in 2020. Here, 

® looks back at some of the news and updates in the field that patients may have missed.

At five years of follow-up, treatment with Opdivo (nivolumab) demonstrated superior overall survival and objective response rates, compared with Afinitor (everolimus), in patients with previously treated advanced or metastatic renal cell carcinoma (RCC), according to results from the phase 3 Checkmate-025 study. 

Patients with advanced, previously untreated RCC may soon have a new option in the novel combination of Opdivo (nivolumab) and Cabometyx (cabozantinib), according to phase 3 results of the CheckMate-9ER trial. 

Birth weight, height and childhood body mass index (BMI) are associated with adult RCC, meaning they could be valuable predictors for a person’s risk of disease, according to new findings published in the European Journal of Epidemiology. 

Data presented at the 2020 ASCO Virtual Scientific Program demonstrated that treatment with savolitinib showed encouraging efficacy and an improved safety data over standard-of-care Sutent (sunitinib) in patients with MET-driven papillary RCC. 

Treatment with Cabometyx (cabozantinib) in combination with Tecentriq (atezolizumab) demonstrated promising clinical activity in patients with advanced clear cell RCC, according to data presented at the 2020 ESMO Virtual Congress. 

Data from a phase 2 study presented during the 2020 ASCO Virtual Scientific Program demonstrated that Avastin (bevacizumab) in combination with Tarceva (erlotinib) was well tolerated and produced encouraging clinical outcomes in patients with advanced hereditary leiomyomatosis and RCC or sporadic papillary RCC. 

Fotivda (tivozanib) significantly improved survival, compared with Nexavar (sorafenib), in patients with highly relapsed or refractory metastatic RCC, according to results from the phase 3 TIVO-3 trial presented at the 2020 ASCO Virtual Scientific Program. 

A roundup of some kidney cancer news and updates that occurred in 2020 that patients may have missed.

Kidney Cancer News and Updates That Patients May Have Missed in 2020

.” I’ve used that phrase often. This article put many of my thoughts into words and words into paragraphs. After treatment, that is something I struggle with, still. “Changing the trajectory of my life” is a perfect description. The diagnosis turned my world upside down. The treatment wreaked havoc on my body and mind. Thank you. Reading this helps so much.

Robin (Facebook)Kudos to Kathy LaTour for addressing 

. In 1999, I emerged from the surgical suite at a community hospital screaming like an animal that was just caught in a steel trap. Said agony never improved. Areas of perpetual torment include my chest wall, breast, arm, shoulder, hand and ring finger.

After nearly two years of consults with neurologists and anesthesiologists, I was finally gifted with a name for my omnipresent torture. Dr. Michael Brennan’s diagnosis of post lymph node dissection pain was later confirmed at (Memorial) Sloan Kettering’s pain clinic … Through the years, I have found that a day of activity — whether it be moderate exercise, shopping or teaching my four-hours-aweek GED course — must be followed by a day of homebound relaxation.

Comments from you, our readers, from the 2018 Summer issue of Heal.

Scott Hersh

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