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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

Timely Diagnosis

When you are focused on something for a period of time sometimes you can lose perspective. For the past 10 to 15 years’ experts have been recommending that when diagnosed with malignant mesothelioma that you seek out an experienced medical team at a center for excellence- a team that is involved with research, and can give you your best options. Since this message has been around for the past 15 years or so, it was surprising to read a recent study on what the treatment patterns of patients diagnosed with malignant pleural mesothelioma actually are. The study is a reminder of the difficulty in diagnosing malignant pleural mesothelioma. In addition to the diagnosing challenge, the importance of encouraging patients to seek further treatment needs to be re-enforced.

A recent retrospective study concentrated on the treatment patterns of patients with malignant pleural mesothelioma. Led by Dr. Marjorie G. Zauderer, MD, MS, Co-Director of the Mesothelioma Program at Memorial Sloan Kettering Cancer Center in New York, the abstract was presented at the 2017 ASCO Annual Meeting:” Patterns of comorbidity, treatment, resource utilization, and referral in malignant pleural mesothelioma patients in the U.S.” The study used the Market Scan insurance claims database of patients diagnosed with malignant pleural mesothelioma between January 2004 and December 2015.

The patients were 65.4 percent male and 34.6 were females. The average age was 71 years old. The conditions that they had before diagnosis were chronic pulmonary disease 20.7%, metastatic solid tumor- 17.5%, and diabetes 15.4%.

For treatment, the study found that 51.2% had no chemotherapy, radical surgery was utilized only 4.1% of the time.

The most common diagnosis that patients received at the beginning was pleural effusion-16.6%, chest pain 10.7%, shortness of breath 9.6%. and cough 8.5%.

The time that a patient presented to his MD with lung related symptoms and a diagnosis of malignant pleural mesothelioma was a median time of 77 days. Times ranged from 23 days to 258 days.

Malignant pleural mesothelioma is an aggressive cancer, although there is no cure currently, there are treatment options, that can improve a patient’s quality of life. When there is a delay in diagnosis, treatment options can be limited.

This is a very interesting study and shows there is still much work to be done, and education in order for patients to have the most updated treatment options, in a timely manner.

– Ellie

Reaching Out In Response to a Mesothelioma Diagnosis

When someone is diagnosed with mesothelioma or any serious illness, it is not unusual that family and friends do not know what to say or how to acknowledge what is going on. Once diagnosed with mesothelioma, hopefully the patient’s friends and family will rally around them.

Some people, with the best intentions, will tell you it will be Ok. Some will offer their opinion on chemotherapy, and how they feel it is just “poison”. The intentions are good, the delivery and message can be distressing to the patient and family to hear. There are also the group of people upon hearing the news, that disappear and you do not hear from them. It can be surprising that some that you thought would be with you are not. For your own health, try not to dwell on the ones that cannot handle your diagnosis.

To be helpful, according to , take your cues from the person with cancer, some will want to talk about their illness, others prefer privacy. Let them know you care. Respect their treatment decisions. Listen without always feeling that you need to respond. Offer to help in concrete, specific ways. The advice continues about what not to say. Don’t offer advice they don’t ask for, or be judgmental. Avoid being patronizing, or telling the person with cancer “I can imagine how you feel.”

During you or your loved one’s journey with mesothelioma, you might discover that you have formed new relationships. Sometimes the people who surround you at your darkest moments may be not the ones you expected to be there. We have seen bonds form between people that they were even surprised about. Two women from totally different walks of life and completely opposite interests had formed a tight bond, so much so, that they made their husbands appointments on the same day so they could support each other. For these patients and families this was the positive that they were taking from the diagnosis of mesothelioma. For some, these are reassuring positive relationships, for others it might be too much to handle.

If someone you know is diagnosed with a serious illness, reach out. Listen instead of talking. Expect the person to have good days as well as bad days. Cancer is an equalizer. It reminds us all that our time on this earth is limited, make the most of it, and reach out to others who are having a rough time.

– Ellie

Four Stages Of Emotions After Receiving My Mesothelioma Diagnosis

It is never an easy thing when your doctor tells you that your biopsy report is abnormal. In order for you to accept your mesothelioma diagnosis, you must go through many stages.

Stage 1: Denial

In the fall of 2007 while watching a Patriot game, my cell phone rang. Did you ever get a phone call and look at the number and say I have no idea who this is but… I need to take this call? It was my colon-rectal surgeon who had just done a bowel resection for diverticulitis. My ovaries and sigmoid colon were removed via a laparoscopy. I was recovering with minimal discomfort. I was almost one-week post-surgery at this time. Why on earth would my surgeon be calling me at 7:30 in the evening???   After 2 minutes of small talk, he states that there is a “little problem” with my pathology report.   “A little problem!!!” I repeat his words. “I don’t understand. I had diverticulitis, this is not a malignant disease.” He then tells me that both my ovaries had abnormal cells that they can’t differentiate. Now I immediately feel that ugly pit in my stomach. This can’t be happening. Denial, yes I don’t want to believe this. My slides were sent to Mass General for a second opinion. I was told it would be about 10 days to get their report. Unless you have been through this yourself, you have no idea how stress, sleepless nights, and anxiety take over your life.

Stage 2: Anger

After my long 10 days of waiting, I call for my report. Doctor is away until end of week; the secretary tells me “No!”.   I try telling the secretary that I need my report but am told I must wait until my surgeon returns as no report is in my chart. I can’t tell you how angry I became, yet there is nothing you can do. Wait…. 4 more days feels like eternity. I don’t want to talk to anybody about it. I have 2 sons who are in there 20s yet why tell them about it when I don’t really know what I am dealing with.   Anger has no limits!

Stage 3: Depression

On Friday afternoon, my dreaded phone call confirms mesothelioma in both ovaries. The pathologist states it is a rare finding and prognosis is guarded.   I’m shocked, sad, and in a fog. “Guarded, guarded,” I repeat the words over and over. I look up the definition. Not good. I refuse to just sit back and let this disease take over.

Stage 4: Acceptance

Well I don’t actually think I ever accepted it but I definitely learned to deal with it. I became my own advocate as no cases of peritoneal meso had been diagnosed at my hospital. I called numerous doctors who dealt with peritoneal mesothelioma. I was not going to let this disease take over my body without a fight. It was a tedious job but it was what I needed to do to feel comfortable with the plan of care I was going to take. It is indeed a rare tumor. I did end up traveling to New York for surgery and chemo.

In conclusion, it’s ok to deny your diagnosis, be angry at the world, and feel depressed. These are all stages we must go through to finally reach our accomplishment.

8 years and cancer Free. Yes!!!

About Julie Russell R.N.

julie-russellJulie Russell is an experienced Registered Nurse who is also a mesothelioma cancer survivor. Julie’s clinical expertise in nursing is in the area of the Cardiac Intervention. She has also been an instructor of Advanced Cardiac Life Support (ACLS) and Basic Life Support (BLS) for many years. Her varied nursing background includes roles as a nursing supervisor, educator and staff nurse.

Diagnosed with peritoneal mesothelioma in 2008, Julie has undergone surgery, chemotherapy, and become an advocate for herself and others. A mesothelioma diagnosis effects the whole family. Her two sons became active in the mesothelioma community as well. She is a passionate advocate for all patients, but peritoneal mesothelioma is a personal cause of hers. She will be a guest blogger for us. Julie will be sharing her personal experiences with peritoneal mesothelioma as she continues to live and work a full life. Since diagnosis, Julie has also become a grandmother. We invite you to follow Julie’s journey and feel free to contact her for any questions or support.

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Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

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