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Alison Silberman is the CEO of Stupid Cancer, an organization which helps to empower those affected by AYA cancer.

Adolescent and Young Adult Cancer Awareness Week sheds light on the financial hardships young cancer survivors face, including debt and limited assistance.

Raising Awareness of Financial Struggles Faced by AYA Cancer Survivors

Although testicular cancer is a rare, the disease makes up the most common malignancy in men aged 15 to 44, according to the Testicular Cancer Awareness Foundation, and is often found through early detection prompted by noticeable signs such as lumps, swelling or tenderness.

April serves as Testicular Cancer Awareness Month, and according to Dr. Benjamin Garmezy, although testicular cancer is daunting, it remains highly curable, with cure rates exceeding 90%, and ongoing research continuing to improve the already high numbers of cure.

“Testicular cancer is scary. Cancer is scary. Cancer is a charged term. However, this is one that's highly curable. We say every patient diagnosed with this disease has a chance of cure, and a highly likely chance of cure,” Garmezy, a medical oncologist at SCRI Oncology Partners and the assistant director of Genitourinary (GU) Research at Sarah Cannon Research Institute in Nashville, Tennessee, emphasized.

In an exclusive interview with CURE, Garmezy delved into the topic of Testicular Cancer Awareness Month, highlighting topics like warning signs and symptoms of the disease, as well as the most common treatment options and factors that make someone more likely to develop testicular cancer.

Notably, Garmezy also serves as the co-chair of the GU Research Executive Committee at Sarah Cannon Research Institute.

CURE: What are the early warning signs and symptoms of testicular cancer that patients should be aware of?

: Testicular cancer is actually something that is often caught pretty early because the early warning signs are so obvious. Generally, a young man will feel a mass, bump, tenderness, or swelling — something like that. Testicular cancer is the most common malignancy in young men, typically between the ages of 15 to 35, but it is still quite a rare disease.

Generally, if you feel something, please go to a doctor, and you'll get it identified via, generally, an ultrasound. An ultrasound is a non-invasive imaging test that will look into the testicle and see if it's a concerning mass or not.

What are the most common treatment options for testicular cancer, and how do they impact long-term health?

The most common treatment options depend on the stage of the cancer diagnosis. As I said, most men will catch [their] disease early, and generally, what we call an orchiectomy, or surgical removal of one (not both) of the testicles, is enough to cure that patient. Then, we can just monitor them and hope nothing ever comes back. Oftentimes, the cancer does not return, and that's all that's needed.

However, some patients present with more aggressive disease at the time of diagnosis, whether that's disease that has spread to the lymph nodes (which is very common) or the lungs. These patients may need chemotherapy, radiation or further surgery, which is a dissection of the lymph nodes.

Selecting the appropriate treatment between surgery, radiation and chemotherapy is based on the pathology at the time of surgery, as well as what some of the lab values are telling us about your potential risk. This involves looking at what we call tumor markers in the blood. There are three blood values we follow: LDH, AFP and beta-HCG. We're going to use all that information, and sometimes we'll recommend chemotherapy.

Oftentimes, we don't; oftentimes, we just recommend surveillance with a schedule of scans that become wider and wider intervals as we progress, until we can eventually transition you out of an oncology clinic and have you follow up with just a primary care physician.

Are there specific risk factors that make someone more likely to develop testicular cancer?

Yes, there are a few identifiable risk factors. One of the most important, and perhaps unnoticed, risk factors is undescended testicles. This is not uncommon in young boys and toddlers. Sometimes the testicle is surgically corrected, and [sometimes it descends on its own]. However, having a history of undescended testicles is a risk factor.

For men with this history, we recommend monthly self-exams. This involves using two fingers to gently feel around, making sure the size of the testicles isn't changing and checking for any new lumps, bumps, tenderness or swellings that might indicate the need for a testicular ultrasound or a follow-up with a urologist for diagnosis to ensure it's not a malignancy. I will say that often it is not cancer. Swellings of veins and tubes in that area are more common causes of those sensations than cancer. So, don't panic if you feel something, but of course, we will want you to get it evaluated.

Undescended testicles, or what we call cryptorchidism, is one of those potential causes. Other risk factors are more nuanced, such as a family history of testicular cancer. Obviously, we're going to be more attentive to this for a patient whose parents or another family member had testicular cancer. There are certain genetic syndromes, like Klinefelter syndrome, that can be associated with testicular cancer.

However, generally, this is a disease that just happens sporadically, and one that just pops up due to what we might call bad luck.

For patients in remission, what follow-up care is needed to monitor for recurrence, and how can they maintain their overall health after treatment?

Let’s say you're cured by either surgery or chemotherapy, or maybe both. That's great news. Chances are the cancer is not going to come back. However, there's always that risk, and if it does recur, know that there are still curative options available to you, even if that cancer comes back, which is what's unique about testicular cancer — it's a highly curable disease.

Surveillance is based on your risk features. How high were those tumor markers in the blood that we talked about earlier? What was the actual spread of the disease that led to more aggressive therapy? Or was there no need for more aggressive therapy? Then you'll be followed on at least a five-year plan. Sometimes that means checking in with your physician every two months if you have high-risk features based on labs and exams. Sometimes that spaces out to every three, four or six months.

By the time you move out to year three, year four, year five, you're starting to have fewer and fewer visits with that oncologist, and you start to space out those visits, even potentially annually. So, it gets better; the highest risk of recurrence is in those first two years. But there are other things that need to be discussed at those visits. It's not just, "Is the cancer back? Yes or no," because it's often not. It's how do we continue to heal and take care of someone who has potentially had chemotherapy in the past?

So, one, we're thinking about looking at their cardiac risk factors, making sure their overall health is OK, making sure their wellness is OK, making sure other labs that maybe young men don't often get checked by their primary care doctors — well, maybe we can check some of those health labs at those visits while we have them in our oncology clinics. So, those are things to think about. And the other thing is fertility. If you had chemotherapy, hopefully, you did sperm banking prior to the chemotherapy. That's the gold standard in maintaining your fertility. A few men may still have their fertility after chemo, but we do suggest you do that upfront.

Now, if you had surgery and not chemotherapy, so you have one remaining healthy testicle, oftentimes you will remain fertile. Some providers still recommend fertility preservation prior to surgery, but not everyone does. But then you're also going to want to check for testosterone levels and just make sure that the hormonal balance in that patient is still in check, or if any tweaks need to be made.

What message would you like to impart to patients during Testicular Cancer Awareness Month to help raise awareness and encourage early detection?

Testicular cancer is scary. Cancer is scary. Cancer is a charged term. However, this is one that's highly curable. We say every patient diagnosed with this disease has a chance of cure, and a highly likely chance of cure. Over 90% of these men are going to get cured. What I tell my patients is this is hopefully just going to be a bad dream in your life's rearview mirror, and we're going to get you through it. But even if that frontline chemo doesn't work, there are other options. We can do transplant. We can do higher doses of chemotherapy and still cure patients with those salvage options.

Sarah Cannon Research Institute — where I work — has a whole host of clinical trials available for patients with novel cellular therapies, where we're genetically engineering white blood cells to go into a patient and try to directly attack the tumor, or we have a molecule that will grab onto your own immune cells and bring them into the tumor, called a T-cell engager. We have all sorts of really cool technology as well that can really help, I think, extend life and perhaps achieve more cures in patients with testicular cancer. So, that's the big picture. Understand that this is scary, but also understand that there's a lot of help out there.

Another thing to consider is, how do we catch it early so that we don't have to go through all that? That's the other big goal, and I think that involves, if you're at higher risk, definitely doing monthly self-exams in the shower, in the privacy of your own room, whatever it may be. Feel around the testicle. It's OK if one is a little bit larger than the other; that's normal. It's OK if one is a little bit more descended than the other; again, that's normal. You're looking for changes. You're looking for masses, lumps, bumps, something that doesn't feel right.

Now, you're going to have a little swelling at the top, or somewhere near the top of your testicle on the outside, because you have tubes that connect into the testicle, because the testicle has a biological function — men have them for a reason. But that's normal; you're looking at changes. Remember, if you find swelling, it's probably not cancer, but you should get it evaluated.

The thing is, don't be afraid. Go to a urologist or a primary care doctor. Get an ultrasound if you need one. Find out if you have a cancer that's easily removable before it spreads, or if this is something else, like a hydrocele or a varicocele, some kind of vascular benign swelling of those blood vessels that feed that testicle. So, don't panic, but actually do the exams.

The question is, should everyone be doing self-exams? I think that's a question we get a lot, and the answer is, we don't really know. Now, the United States Preventive Services Task Force says that's not necessary. The reason for that is, whenever they make a recommendation on screening, they consider whether it increases or decreases cure rates. In this case, we're going to cure almost everyone, so it doesn't really check those boxes. However, some oncology guidelines and societies in America and Europe suggest anyone with those risk factors we talked about earlier maybe do monthly self-exams.

To me, what do I tell people who ask me? I say: why not just do them? It takes a minute or two of your time once a month in the privacy of your own home; it doesn't take a lot of work. In the shower, you're washing yourself anyway, so it's just a good time to check, make sure everything feels right, and then ask for help if it doesn't.

Transcript has been edited for clarity and conciseness.

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Testicular cancer, though rare, is the most common malignancy in men aged 15 to 44. It is highly curable, with cure rates exceeding 90%. Early detection is often prompted by noticeable signs such as lumps or swelling. Treatment typically involves orchiectomy, with chemotherapy or radiation for more aggressive cases. Risk factors include undescended testicles and family history. Post-treatment surveillance is crucial, focusing on recurrence risk and overall health. Monthly self-exams are recommended for high-risk individuals to facilitate early detection and improve outcomes.

Testicular cancer is rare but highly curable, especially with early detection; treatment varies by stage, and follow-up care supports long-term health.

Tumor

Knowing the Signs to Detect and Treat Testicular Cancer Early

The U.S. Food and Drug Administration has approved Jobevne (bevacizumab-nwgd), a biosimilar to Avastin (bevacizumab) for intravenous use in cancer types including colorectal cancer, non-small cell lung cancer, glioblastoma, renal cell carcinoma, cervical cancer and epithelial ovarian, fallopian tube or primary peritoneal cancer.

The approval — announced in a news release from Biocon Biologics Ltd., a subsidiary of Biocon Ltd. — is indicated for cancers including metastatic colorectal cancer in combination with intravenous fluorouracil-based chemotherapy for first-or second-line treatment and metastatic colorectal cancer in combination with fluoropyrimidine-irinotecan- or fluoropyrimidine-oxaliplatin-based chemotherapy for second-line treatment in patients who have progressed on a first-line bevacizumab product-containing regimen.

Jobevne is also indicated for unresectable, locally advanced, recurrent or metastatic non-squamous non-small cell lung cancer in combination with carboplatin and paclitaxel chemotherapy as a first-line treatment as well as in recurrent glioblastoma in adults; metastatic renal cell carcinoma, in combination with interferon alfa and persistent, recurrent, or metastatic advanced cervical cancer in combination with paclitaxel and cisplatin, or paclitaxel and topotecan.

Additionally, it is indicated for epithelial ovarian, fallopian tube or primary peritoneal cancer in combination with carboplatin and paclitaxel, followed by Jobevne as a single agent for stage 3 or 4 disease following initial surgical resection; with paclitaxel, pegylated liposomal doxorubicin or topotecan for platinum-resistant recurrent disease who received no more than two prior chemotherapy regimens and in combination with carboplatin and paclitaxel or carboplatin and gemcitabine, followed by Jobevne as a single agent, for platinum-sensitive recurrent disease.

The news release further notes that Jobevne is not indicated for the adjuvant, or postsurgical, treatment of colon cancer.

Jobevne, according to the news release, is a recombinant humanized monoclonal antibody, a vascular endothelial growth factor (VEGF) inhibitor designed to bind with VEGF and block the interaction with its receptors in order to prevent angiogenesis, or the formation of new blood vessels, thereby restricting blood supply to a tumor.

A biosimilar medication, as explained by the FDA on its website, is highly similar to a biologic medication already approved by the FDA and has no clinically meaningful differences from the original reference product, meaning patients can expect the same safety and effectiveness over the course of treatment. Biosimilars, the FDA notes on its website, can increase access to lifesaving medications at potentially lower costs.

The approval on Jobevne, according to the news release, was based on pharmacokinetic, safety, efficacy, nonclinical, structural, analytical and functional data confirming that Jobevne is highly similar to Avastin, with no clinically meaningful differences in pharmacokinetics, safety, efficacy and immunogenicity.

Biocon Biologics Ltd., as it noted in the news release, also markets bevacizumab in Europe and Canada under the name Abevmy, with those approvals having been issued in February 2021 and November 2021, respectively.

“The U.S. FDA approval of Jobevne is a significant milestone—our seventh biosimilar approved in the U.S. and a strong addition to our robust oncology portfolio,” said Shreehas Tambe, CEO and managing director of Biocon Biologics Ltd., in the news release. “It underscores the depth of our scientific expertise and commitment to expanding access to high-quality, affordable biologics. We look forward to working with all stakeholders to bring more treatment options to patients.”

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The FDA has approved Jobevne (bevacizumab-nwgd), a biosimilar to Avastin, for intravenous use in various cancers, including colorectal, non-small cell lung, glioblastoma, renal cell carcinoma, cervical, and ovarian cancers. Jobevne is a VEGF inhibitor that prevents angiogenesis, restricting blood supply to tumors. The approval was based on comprehensive data showing no clinically meaningful differences from Avastin. Biocon Biologics Ltd. markets Jobevne in Europe and Canada as Abevmy. This approval marks Biocon's seventh U.S. biosimilar, enhancing their oncology portfolio and commitment to affordable biologics.

The FDA has approved Jobevne, a biosimilar to Avastin, for IV use in a number of cancer types.

FDA Approves Avastin Biosimilar Jobevne Across Several Cancer Types

I am currently starting treatment with a BTKi, or Bruton’s tyrosine kinase Inhibitor, which represents an important advancement in targeted cancer therapies. These drugs were approved about 10 years ago following extensive clinical trials and have since become a cornerstone in the treatment of chronic lymphocytic leukemia (CLL). BTKis work by blocking a key enzyme, Bruton's tyrosine kinase, which is essential for the signaling pathway that drives the survival and proliferation of malignant B cells. By inhibiting this enzyme, therapy helps control the growth of CLL cells, slowing disease progression.

CLL is a type of cancer that originates in the bone marrow, affecting a specific type of white blood cell called lymphocytes. These cells are crucial for the immune system, helping the body fight infections. In CLL, however, they grow uncontrollably, crowding out healthy blood cells and impairing the body’s ability to fight infections. Despite being a form of leukemia, CLL is characterized by the slow and often indolent progression of these malignant lymphocytes.

As with any medication, BTKis come with their own set of side effects. I have new bruising and moderate night sweats and watch for any new infections. Additionally, in some cases, these drugs may inadvertently trigger autoimmune responses or worsen pre-existing autoimmune conditions, making the management of side effects a delicate balance. Each patient's experience with treatment is unique, requiring ongoing monitoring and adjustments. I have a blood test every week for the next six weeks.

We have a single daffodil outside our front door that blooms each spring. It serves as a poignant reminder of the delicate balance in nature — and, by extension, in life. The daffodil is a hardy flower, but like me, it is vulnerable to extremes. It wilts when the temperature shifts too drastically. Too cold, and it succumbs to the chill; too hot, and it withers in the heat. Much like the fragility of health, the daffodil requires care and understanding to thrive. It reminds me that resilience is not about avoiding change or hardship but about adapting to what is thrown our way.

As spring unfolds in Santa Fe, New Mexico, the weather in the foothills of the Sangre de Cristo Mountains mirrors this dance of resilience. The mountains, named for their reddish hue when covered in snow, stand as a symbol of enduring strength. The Spanish explorer who named them, impressed by their vibrant colors, called them "the blood of Christ" in 1719 — a name that endures as a reminder of nature’s permanence.

Surrounding Santa Fe are the Pueblo communities of Nambe, Pojoaque, San Ildefonso, Ohkay Owingeh, Santa Clara and Tesuque. These communities have a deep spiritual and cultural connection to the land. They have many names for the mountains in their native Tewa language — names rich with history and meaning but not easily translatable into English. Their connection to the land is woven through the centuries, shaping their way of life even as they face new challenges brought by drought.

The landscape here in Santa Fe is stark and beautiful, reflecting both the allure and the challenges of living in a high desert environment. The discomfort of extreme dryness and strong winds is forgotten when viewing the mountains, the blue sky and the dramatic sunrises and sunsets. Many artists have come here to paint, drawn by the brilliance of the colors and the clarity of the light.

The juniper trees are blooming this time of year, and clouds of pollen hang in the air, carried by the wind. It’s an annual reminder that the climate here is shifting in subtle yet powerful ways. Everyone in the community feels it, sneezing and rubbing their itchy eyes. Like many of my older neighbors and friends, I have developed dry eye syndrome, where the body does not produce enough tears. Fortunately, I found an effective eye drop medication that relieves my symptoms.

This year, we are amid a severe drought, with very little snow and no substantial rainfall during the winter months. As a result, fire season is arriving earlier than usual, and the threat of wildfire looms large. Like cancer, we must be on guard, prepared for change, and ready to find safer ground if necessary. That preparation is important, but we must not let it consume us with anxiety or worry.

These incremental changes in the climate create a challenging environment for gardening. Yet, much like the Pueblo people, we have found ways to adapt. The acequia system, a traditional network of community irrigation ditches, has been a key part of Pueblo agriculture for centuries. These ditches are not just physical canals; they represent a community effort to manage water resources collaboratively. The acequia system embodies self-governance and shared responsibility, teaching us that resilience is not only an individual effort but a collective one.

Adapting and Finding Strength in Uncertainty

Our gardening practices reflect similar strategies for resilience. By planting fruit trees closer to the house and growing vegetables in containers, we protect them from the unpredictable spring winds and cold nights. This approach mirrors my own journey with cancer. Just as gardening requires careful planning, adaptation, and resilience in the face of changing seasons, managing cancer demands flexibility and a strategic mindset.

It isn’t easy having cancer. But like gardening in a harsh climate, survival and growth come from strategies, adaptation, and patience. Every change — whether in the weather or the course of treatment — requires a thoughtful response. In this way, both gardening and health teach us the value of resilience: the ability to adapt, to adjust, and to continue growing, no matter the circumstances.

By aligning myself with the resilience observed in nature and the wisdom of the communities around me, I feel empowered to face the challenges of my treatment. Just as the daffodil, the Pueblo people and the acequias have adapted to their environment, we too, will adapt and thrive through this journey. It is our community, and we can do better working together.

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Bruton’s tyrosine kinase inhibitors (BTKis) have revolutionized chronic lymphocytic leukemia (CLL) treatment by targeting a crucial enzyme in malignant B cell survival. While effective, these therapies come with side effects, necessitating careful management and monitoring. The narrative draws parallels between personal health challenges and the resilience required in nature and community life, particularly in the context of Santa Fe's climate and cultural heritage. The acequia system exemplifies collective resilience, emphasizing the importance of adaptation and community support in overcoming adversity, whether in health or environmental challenges.

It isn’t easy having cancer. But like gardening in a harsh climate, survival and growth come from strategies, adaptation, and patience.

Managing Cancer Demands With Flexibility and a Strategic Mindset

In today’s world, I sense a real despondency I have never seen before. Horrible divisions have split our country and the world, including family and friends. Countries are at odds with each other, and people are losing their jobs and benefits. Prices are soaring, and people are struggling to pay their bills.

Some of my friends and relatives are so distressed they cannot bear to watch the news. A few are experiencing nightmares, while others watch the news for hours and post everything on social media. It is easy to forget the good happenings like neighbors, friends, volunteers and agencies serving others hot meals, helping through storms and providing shelter.

I admit I am just as angry and worried as everyone else, and the rhetoric is personal for me. I worry that the research presently being done on cancer and other diseases may be stopped. The only reason I am still alive is because of the ongoing research.

I am dismayed at people with disabilities being deprived of services because I have worked with this population my entire life. I was a children’s librarian, and I know how important education is to our society.

I then think back to the origins of COVID-19 and how scared we all were. We felt alone and frightened, not knowing what the future would bring and if a vaccine would be perfected. Some of us were not able to visit family far away or see our loved ones in nursing homes.

However, we were kind to each other. We cheered and supported our medical personnel and our teachers. We helped as much as we could and watched over our neighbors.

Most of that went away after the pandemic was over. Why? Because the pandemic distracted us from our daily duties and we focused on the most important things in our lives, which were families and friends. 

Let me fast forward to the present as I try once again not to panic, although some of these fears are justified. It has occurred to me that the reason I am not as devastated as some is I am a cancer survivor.

I witness the doctors, the nurses, the people who are keeping me alive and do care. I am distracted because I am fortunate to see the good that many people can do in the middle of this horrible disease. I have had to make life-changing decisions, such as having a bone marrow transplant. Being alive is a miracle in itself.

Amazingly, a terrible diagnosis like cancer has given me and others a different perspective than most. We know the world is in an awful place right now. However, we have survived this far, and life will continue.

Cancer is a distraction and not always a bad one. We do learn perspective. There are some good things we can take away in tragic events, whether it is a pandemic or experiencing cancer.

These tragedies force us to ignore other distractions and focus on the crucial events in our lives, which include our relationship with families, our battles with cancer and the medical personnel who help us. These negatives can become positive.

We have had rough lessons with this formidable disease, just like with COVID-19, but sometimes, it prepares us for life’s more significant lessons, and that is good.

The current global climate is marked by division, economic struggles, and widespread despondency, affecting individuals' mental health and daily lives. Despite these challenges, the author finds solace in the resilience and kindness witnessed during the COVID-19 pandemic and through personal experiences as a cancer survivor. These adversities have provided a unique perspective, emphasizing the importance of focusing on meaningful relationships and the positive impact of medical professionals. Tragedies like pandemics and cancer can offer valuable life lessons, transforming negatives into positives and fostering personal growth.

In an upside-down, topsy-turvy world, cancer can be a distraction for us.

Alison Silberman

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