Meet Greg

Greg was training for a half ironman triathlon in 2014 as a tribute to the wife of a friend who has passed away the year before. Greg had been having problems with his knee and wanted to have it checked out so he could continue his training regimen. During the exam, a blood test was done that showed a high PSA level, which can be an indicator of prostate cancer, and a biopsy confirmed the diagnosis.

“I had to learn a lot about prostate cancer in a short period of time,” Greg said. He went through five months of radiation, and although he had some side effects from the treatments, he was able to continue working. “I actually competed in the triathlon and it went pretty well, but the thought of the cancer returning was always in the back of my mind.”

In late 2017, Greg got sick with what he thought was the flu. He went to the hospital when he started throwing up blood and tests found a grapefruit-sized tumor on his stomach. His health care team removed the tumor and fortunately Greg was told the cancer was treatable.

“I lost my girlfriend to pancreatic cancer 13 years ago,” offered Greg. “It was devastating; it’s something that never leaves you when you lose someone like that. And now I had to deal with cancer myself, twice.”

Greg is now on a regular schedule of having check-ups and scans and routinely has his PSA levels checked. “It’s a scary situation. I’m always worried about the cancer coming back.”

In 2018, Greg was looking for a support group and found Cancer Support Community. He started attending yoga and the Cooking for Wellness programs. When Governor DeWine issues stay-at-home orders because of the COVID-19 pandemic, Greg started attending the virtual programs.

“I take the yoga classes four times a week, and log into the mindfulness sessions as well,” said Greg. “They help me feel better physically. My knee keeps me from running and I’m stuck inside anyway. So, these classes are great. They help me relax and lessen my anxiety. I try to practice the something I learn in yoga every day, and overall, it makes me feel better.”

“I really appreciate Cancer Support Community offering these programs online during this time. The fact that they’re available for free is an added benefit.”

For more information, please visit https://cancersupportohio.org/get-involved/facingcancertogether/

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Greg was training for a half ironman triathlon in 2014 as a tribute to the wife of a friend who has passed away the year before. Greg had been having problems with his knee and wanted to have it checked out so he could continue his training regimen. During the exam, a blood test was… Read more.

Meet Annamarie

A suspicious spot was found on a chest x-ray Annamarie had in 2010. It was supposed to be a routine screening before an elective surgery procedure, but it led to a CT scan with more bad news. On Mother’s Day, she received a call from her doctor – there was a cancerous tumor in her lung.

“I’ll never forget that day,” Annamarie said. “When your doctor calls you on a Sunday, you know it’s not good. It sure ruined Mother’s Day.”

A lot more test followed, and then there was surgery to remove the tumor and part of her lung. “There was no time to think about it. It all went so fast.” Having COPD (Chronic Obstructive Pulmonary Disease) made Annamarie’s year-long recovery more arduous.

Then, in 2014, she got sick again and her health care team thought the cancer had returned. “I had pneumonia and blood clots in my legs, but I never gave up hope,” said Annamarie. Fortunately, after numerous tests, no cancer was found.

Annamarie recently started attending Cancer Support Community’s lung cancer support group. “No one can understand your cancer journey, but it helps to be around others who have the same issues,” she offered.

Annamarie had attended yoga classes with Abby in the past, and when the COVID-19 pandemic required social distancing, she decided to try the virtual programs at Cancer Support Community. “It has helped a lot to be able to participate,” she noted. “With my age and health concerns related to the virus, I can’t go out. COVIS is a lung disease and I already have compromised lungs, so it’s a real concern.”

“The virtual programs have been a Godsend for my husband and me,” Annamarie offered. “We’re both extremely appreciative that they’re being offered.

For more information on how you can support our Virtual Community, please visit https://cancersupportohio.org/get-involved/facingcancertogether/

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A suspicious spot was found on a chest x-ray Annamarie had in 2010. It was supposed to be a routine screening before an elective surgery procedure, but it led to a CT scan with more bad news. On Mother’s Day, she received a call from her doctor – there was a cancerous tumor in her… Read more.

Mesothelioma Isn’t Going Anywhere

By: Devin Golden on December 5, 2019

For more information please visit, https://www.mesotheliomaguide.com/mesothelioma/

In the latter half of the 20th century, the general public learned of the dangers of asbestos. They learned the substance is, in fact, a carcinogen, one that can lead to aggressive diseases such as mesothelioma.

The awareness of the harm caused by asbestos led to increased regulations in the United States and scrutiny of businesses that used the mineral. Most people expected asbestos-caused diseases like mesothelioma to top off early in the 21st century and eventually fade into obscurity.

That result has not happened — nor will it any time soon.

According to the World Journal of Surgery, pleural mesothelioma cases increased from 2004 to 2014. The publication analyzed the National Cancer Database’s information for incidence rates during this time. The result from this examination shows that mesothelioma has become more prevalent in the United States.

National Cancer Database on Mesothelioma

In 2004, there were 1,783 pleural mesothelioma cases in the country. In 2014, there were 1,961 reported cases. That’s an increase of around 10%. Pleural mesothelioma only accounts for between 70% and 80% of all mesothelioma cases. Peritoneal mesothelioma and pericardial mesothelioma comprise the other 20-30% of cases.

According to numerous sources, including the Centers for Disease Control and Prevention, there are usually between 3,000 and 3,300 new mesothelioma cases each year. From 2012-2016, there were on average 3,253 new cases each year. In 2016 alone, there were 3,096 reported mesothelioma cases.

If we follow the rule that “between 70% and 80% of all cases involve pleural mesothelioma,” then there were between 2,100 and 2,500 pleural mesothelioma cases in 2016. Like said earlier, this disease isn’t going away. Mesothelioma incidence is stagnant, if not increasing, year to year.

But …

Mesothelioma Treatment Is Improving Science continually evolves, which means treatment for diseases continuously improves. Mesothelioma treatment, in particular, is getting better, which is a positive for patients and their loved ones. Earlier in 2019, The U.S. Food and Drug Administration approved the Novo TTF-100L medical device for pleural mesothelioma treatment. It is limited to humanitarian use device distinction, but the approval is a significant moment for mesothelioma patients and doctors.

Peritoneal mesothelioma treatment is expanding as well. Many patients receive cytoreductive surgery, plus heated intraperitoneal chemotherapy (HIPEC) immediately after the operation. In a study published by the Annals of Surgical Oncology, around 55% of participants who underwent this treatment combination survived for at least three years. Roughly 37% survived for at least five years.

This study only included a few peritoneal mesothelioma patients, and other studies have reported different percentages. However, they are all close to the following:

· Between 50% and 65% for three-year survival

· Between 35% and 47% for five-year survival

While these figures are promising, a new method shows even better survival rates.

Dr. Paul Sugarbaker of MedStar Washington Hospital wrote an article for Translational Lung Cancer Research about long-term intraperitoneal chemotherapy. Sugarbaker, an esteemed peritoneal mesothelioma specialist, said that using this method in addition to cytoreduction and HIPEC has increased life expectancies for many people.

According to his report, of patients who regularly received this treatment, around 70% survived for at least five years. That’s great news for patients.

Wait! There’s more good news.

Mesothelioma Patients Undergoing Treatment More Often

The best route to healing from mesothelioma is undergoing treatment. Surgery is the first choice, followed by chemotherapy and radiation. If more patients receive medical help, then more of them will survive for longer, right?

The National Cancer Database’s figures back up this theory.

In 2004, treatment and survival rates were as follows:

· Approximately 34% of pleural mesothelioma patients underwent treatment.

· Around 37% of them survived for at least one year after diagnosis.

· Roughly 9% survived for at least three years.

In 2014, the rates were better:

· Around 54% of patients received treatment.

· Roughly 47% survived for at least one year after diagnosis.

· Approximately 15% survived for at least three years. So more people are getting treatment for their mesothelioma, and more people are surviving for longer after diagnosis.

How to Find Mesothelioma Treatment

We at Mesothelioma Guide can help patients find quality treatment and potentially extend their lives. Our patient advocate and registered nurse, Jenna Campagna, has connections to the top cancer centers in the country.

If you or a loved one has mesothelioma, remember that treatment now is better than ever before. Jenna works with patients every day to improve their quality of life and prognosis. Email her at jenna@mesotheliomaguide.com if you wish to explore your treatment options.

About the Writer, Devin Golden

Devin Golden is the content writer for Mesothelioma Guide. He produces mesothelioma-related content on various mediums, including the Mesothelioma Guide website and social media channels. Devin’s objective is to translate complex information regarding mesothelioma into informative, easily absorbable content to help patients and their loved ones

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By: Devin Golden on December 5, 2019 For more information please visit, https://www.mesotheliomaguide.com/mesothelioma/ In the latter half of the 20th century, the general public learned of the dangers of asbestos. They learned the substance is, in fact, a carcinogen, one that can lead to aggressive diseases such as mesothelioma. The awareness of the harm caused… Read more.

Lessons from a Cancer Patient During a Global Pandemic

Written by: Kate Williams

One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.”

It is a seismic slap. You stumble from the force. The shock almost knocks the wind out of you. The sting remains. Time passes. Your body remembers. Apprehension sets in when you think of it.

Cancer is traumatic.

My cancer diagnosis was unwanted, unwelcome, and uncontrollable. I ache for my life before cancer so deeply that my heart physically hurts. The trauma thrust upon me by my cancer diagnosis is at times physically and mentally paralyzing. Each day I force myself out of bed and face my new reality. In order to survive each day in my new life I was compelled to let go of what I expected my life to be this year. It’s a daily chore. I trained myself to face the world each day with a smile on my face and hide the isolation that is cancer as a young adult. The pain is dulled at times, but the wound is still fresh. And deep.

Having a cancer diagnosis dumped into my lap was coupled with two big emotions that I am still learning to live with and manage effectively in my life: trauma and grief. To cope with cancer, I have had to mourn my old life, the life I had before diagnosis. The expectation that I would spend this year bonding with my sweet baby with a full head of hair while seamlessly working and mothering was ripped from me. I had to let go of the plans I had to indulge my children this year. The idea that I had worked and saved and could finally relax a little with my family now seems so foreign that it could be someone else’s life.

The trauma of this diagnosis is the everlasting feeling that I allowed myself to be so deliriously happy, and this demonic disease caught me off guard. The seismic slap came out of nowhere. If I ever let my guard down again, another big slap could be waiting, lurking, ready to hit me at any time. The anxiety that comes from this trauma is persistent. Headaches used to be headaches. Maybe the indication that I drank one glass of wine too many the night before. Now, a headache might be a sign of metastases to the brain.

As cancer patients, we are forced to accept that life is unfair. Our lives have been upended by brutal changes. We are expected to accept this stroke of misfortune and put forward a positive outlook for our friends and family. We cannot tell them about our anger. They should not see how deeply we are truly suffering. We have to manage our torment and manage their feelings because our pain, justified and decadent as it may be, is a buzz kill.

We have to learn to view our existence through a new lens. Devastating but true, there is no return to life before cancer. Cancer patients learn to move forward. We learn to connect to others with similar experiences. We learn to thrive. We learn to survive.

As if cancer was not enough, I, like every other human across the world, am watching in horror as this pandemic is forcing humanity to grind to a near screeching halt. In an effort to stop the disease from spreading we have all been asked to give up life as we know it, at least for a while.

I watch the world recoil as the pandemic changes our human experience and somehow I remain eerily calm. I feel like a spectator watching humanity adapt to a new reality. I am not in the fishbowl this time, not the recipient of pity stares and cancer word vomit.

Reactions of my friends and family to these grossly unwelcome changes presents a bouquet of emotions that are oddly familiar to me. The anxiety of the unknown. The stress of loss of income. The social and mental isolation. The grief for what the year 2020 should have been.

The consequences of humans staying home for a few months and not safely being able to gather in large crowds are sweeping. Brides and grooms are cancelling weddings. High school seniors are missing their proms and graduations. Families are separated from their loved ones in long term care facilities. Folks who never considered themselves to be “old” are finding themselves lumped into a population deemed particularly vulnerable to the disease. Restaurants are closed. Rent cannot be paid. Retirement savings are dropping again for nervous savers who just got back on their feet after the 2008 crash. Jobs are lost. Money is tight. Stress is consuming.

Humanity is experiencing trauma. Humanity has been slapped and is struggling to recover from the shock.

And yet, humanity seems to be having a very hard time accepting how profoundly unfair life is.

The grief that our friends are experiencing for their old lives, cancer patients know well. We know that life is not a guarantee. Like us, people have been forced to make changes, difficult and uncomfortable changes, changes that affect their mental health, finances, free time with children, happiness, and self-worth. Lives will be forever altered. The trauma from this pandemic will be etched on those of us able to recall it.

Considering the silent and positive heroism Americans expect from their cancer patients, American reaction to these changes has been a mixed bag. Some people can accept that life is not a guarantee. Some have lived misfortune and know it does not discriminate. Some use the grief for what this year could have been and attempt to create a collective force more powerful than an invading threat. Some even find it patriotic and pitch in to help in any way they can, harkening back to a time when Americans proudly fought a common enemy. Folks across the country are donating time, materials, and even a “Rosie the Riveter” effort to aid our beleaguered health care workers.

Others find it beneath their “liberty” to adapt to changes that will save lives. People are angry about the effects on their income. On their assets. On the economy.

Of course, these changes are overwhelmingly unfair. It’s unfair to lose income due to a viral outbreak. It’s unfair for life as we know it to change. It’s unfair to ask everyone to stay home to protect those who are more advanced in age or immunocompromised. There is serious trauma in job loss. There is serious trauma in being broke. There is serious trauma in not being able to pay bills. I have been there, and the scars are seared in my consciousness.

Society will be traumatized from the severe economic, social, mental, and physical costs of this outbreak, and the effort to quash it.

But it is criminally morbid and cruel to suggest that “life should return to normal” for the sake of “the economy” before the viral threat has passed. It comes with a cost: American life.

I am stunned, angry, and deeply hurt at this suggestion.

There are thousands of scared cancer patients across the country who have already been dealt a hand that is profoundly unfair, and now we have to watch, fighting for our lives, while people selfishly complain about “the market.” Treatment plans have been changed, chemotherapy regimens are delayed, surgeries are rescheduled. Patients with otherwise treatable cancers will die and patients who would have passed peacefully surrounded by loved ones will die alone.

Folks without compromised immune systems who level these complaints perceive themselves to be somehow superior. Even if by the random stroke of fortune. These folks fail to consider that a seismic cancer slap can happen to anyone, anytime, anywhere. Cancer does not care.

When I was first diagnosed, people practically fell over themselves to show support to let me know I was loved. But in the time of a global pandemic my life has suddenly become a mere economic cost. A sacrifice at the feet of the almighty market. Capitalism comes with a cost and if lives of the immunocompromised and elderly are one, so be it.

Instead of hustling back to work and casting us aside, there is wisdom in the experience of cancer patients. The helplessness, grief, trauma, and anxiety that people are experiencing with Covid-19 has already taken host in our lives.

Most importantly, don’t take any of the advice you have given us. As a cancer patient, I have been told to “BE POSITIVE” more times than I can count. Despite my urge to hold a mirror back to everyone who has ever told me this, cancer has educated me that hollow advice should be spared. It vastly oversimplifies the experience of trauma and grief to just wax positive over the pain.

Instead, understand that we choose how we respond to this experience and how it will shape our lives going forward. We have every right to be angry, but let the anger ignite a fire that propels us forward.

We have to learn to view our existence through a new lens. Acknowledge the trauma. Air it out because holding it in is even more difficult.

Devastating as it may be, there is no return to our lives before this global pandemic. The change is unwelcome and unwanted, but it is here. We need to learn to move forward. We are so fortunate to be able to connect to others and share our experiences. We will learn to thrive during the pandemic. We can and will learn to survive.

Perhaps we have the misfortune of living in a time with a global pandemic. But perhaps we have the foresight to see that these changes are not the death of us. We are survivors.

Author’s note: The photo at the beginning of this piece is of me in the middle of chemotherapy. At the end of four vicious rounds of AC chemo, I went on a little trip with friends. 2020 was not the year I expected, but I have still been able to have fun. I encourage you to do the same.

 

For more about Kate, please visit her blog: https://www.mskatedecorates.com/cancering/2020/4/2/lessonsfromacancerpatientduringaglobalpandemic

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Written by: Kate Williams One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.” It is a… Read more.

Meet Lynn

Lynn B. had a feeling that something was wrong in December 2013. After talking with her doctor’s office about it, the doctor recommended a mammogram a couple months before her annual test was due. The mammogram showed something concerning and required a biopsy.  “I was pacing around my office, waiting for the doctor to call with the results of the biopsy,” Lynn noted. “They said it was Stage 1B breast cancer, and they immediately scheduled an appointment.”

It was a scary time for Lynn. “I’m usually very frantic and have had panic attacks in the past. I cried in the shower but tried to remain calm on the outside.” At her appointment, the doctor reassured her that they had found the cancer very early and he was confident he could get it all. Lynn felt much better after talking with the doctor. “My family was more scared than I was. But I told them not to pity me, just pray for me.  I think I was calmer than the others around me and I just kept repeating to myself, ‘I’ll be fine!’”

Lynn had a lumpectomy in February 2014, six rounds of chemotherapy and radiation. She continued to work; her boss’s wife helped a couple times a week to make sure the accounting department she worked in was not falling behind.

“I found out about Cancer Support Community Central Ohio at Riverside Radiology. Another patient told me and suggested that I check it out. I called and went to a welcome meeting, then to my first meeting of the breast cancer support group in September.”

Lynn is a regular participant at the meetings. “I look forward to it. The women in my group are inspiring and encouraging and truly my friends.  It’s comforting to be around people who have been through what I have, to hear them say that they’ve been through this and to hear their advice.  And it makes me feel good to be able to share what I’ve been through when a new person joins the group. I hope that can help others who are just starting out on the cancer journey.”

Although it has been more than five years since her surgery, Lynn says there is always that fear of recurrence. But she continues to have regular check-ups with her medical team, and she continues to attend the support group monthly meetings, where she gets hope and encouragement from others who have also been on the cancer journey.

“I appreciate all the services that Cancer Support Community provides, especially since there’s no cost for any of the programs. I would encourage anyone who has been diagnosed with cancer to come to the support group. It’s been a big help to me and I’m sure others would feel the same way.”

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Lynn B. had a feeling that something was wrong in December 2013. After talking with her doctor’s office about it, the doctor recommended a mammogram a couple months before her annual test was due. The mammogram showed something concerning and required a biopsy.  “I was pacing around my office, waiting for the doctor to call… Read more.