CDC Symptom Diary Card

Thursday, June 13, 2013

My Insurance Ending Contract With My Provider!

I received word at the beginning of June from my cancer center that the insurance provider, a Medicare Advantage contract provider, was ending the contract with my cancer center. This is concerning for me and any patient at the cancer center. Quite an overwhelming situation indeed.

The contract ends July 1, 2013.

After I contacted my insurance company they said that the medicare advantage agreement was the only contract effected and that other contracts with the cancer center remain intact.They said they are happy to send me a booklet of other providers, and although I can retain my doctor, I am confused and overwhelmed by the lack of continuity of care, not having access to specialty trained nurses and techs to access my power port, and how will I navigate my care if my care cannot be provided from the location from which my trusted gynonc-oncologist operates?

I may be able to continue benefiting from their care as an out of network patient through the end of the year. I may need a new treatment team when open enrollment begins again at the end of 2013, because the provider will no longer be available and I have no financial means to access my provider as an out of network patient.

On my last visit I was told that I was fortunate to have lived this long, longer than was expected. My immune system is very compromised, I cannot tolerate many of the newer treatments like PARP inhibiters. I have been on chemo for 16 or 17 months now. Like many cancer patients, I have a complicated mix of challenges. Now is not a good time to be denied access to my cancer facility.

I am also extremely concerned for those patients who do not have the means to pay any extra out of pocket expenses now and are now forced to make quick decisions and changes with minimal notice. What about those who have been paying all year and just now are needing treatment, specialty services and access to the cancer center? Mind you this is the medicare contract, so seniors and people who have disabilities are being effected.

How is this ethical? How is this legal?

I called my local Congressman's office, Jim McDermott, and spoke with a concerned representative who was extremely helpful, provided me the correct actions to take, and highly supported my idea to create legislation that disallows an insurance company to terminate a contract with a medical provider after the open enrollment begins.

I want it to be illegal to cut patients off mid-year, especially complicated scenarios involving cancer. It is exhaustive to research and find an oncologist or oncology surgeon whom you trust with your life, is reputable and will treat you in a manner that meets your individual needs.

This particular situation targets medicare patients, which I find criminal.

Per Mr. David Loud, from Congressman McDermott's Office, here is what I can do:

1. Ask to be referred back into my network provider as a plan exception, as this would be potentially harmful to my quality of care. (A nursing friend recommended to specify that changing networks could be detrimental to my health. I can ask my oncologist to write the letter).

2. As soon as I am seen after the contract ends, which is July 01, 2013, appeal the out of network charges with the insurance company.

3. Seek new Legislation by engaging the people who care to contact their local Comgressman so that Congress can create legislation that prevents insurance companies from terminating provider contracts after the open enrollment period begins. Patients have the right to know they can remain with their chosen medical team and treatment facility for the duration of the year. For patients who have chronic or potentially fatal medical conditions, being forced to change providers can be detrimental to the patient's continuity of care and potentially put the patient's health in a state of grave risk.

I plan to keep you all posted on my progress.

Click on the next paragraph to locate your Congressman's office:

I cannot end without stating how much I appreciate the level of access to healthcare provided to me. I always recognize that I am blessed, it could be worse, and to remain humble at all times. I thank God every day for my blessings.

Thank you for caring. Please share with amyone who would care to join this important effort.



Friday, June 07, 2013

Mesothelioma or Ovarian Cancer?????????

Dear readers, I have something very unique to share with you today.

My mother's father died of mesothelioma, lung cancer, many years ago. Emory was an honest, hard working man from Kansas. He served our country as a medic in WWII for the troops building the Burma Road. He also helped to engineer buildings and pretty much anything this great country asked of him. After the war ended, it took 30 days on a carrier to return home from overseas. He never ate rice again.

Upon returning to Kansas grandma and grandpa decided that it was time to start a family. They started with my mom. Eventually he opened a small construction company in Denver. He built a number of small, quality homes, that made us proud. His integrity and word were important to him. He was precise and paid honest wages for honest work. People were proud of my grandpa. You may have heard my mom on the KLG and Hoda show talk about how her father was her inspiration.

When he was in his 70s he was diagnosed with mesothelioma, and the stage was too late for chemo. He had surgery, returned to Kansas with grandma, and eventually passed away after suffering unimaginable pain.  Our family was at his side when he died after receiving upstanding hospice care. It was so sad, we were all heartbroken.

He wanted chemo, he wanted to live.

I remember once visiting grandma and grandpa in Kansas after they purchased an old post office in a small town of literally 20 people. He did a little remodeling, built a tiny barn, he stocked it with 5 or 6 cows, a hand-full of chickens and planted some corn, not sure. The mini barn was picture perfect, pristine, a little cow palace I thought.

I remember there was not a street light to be seen along the dirt road that wound it's way to the highway. At night you could see billions of stars, hear the crickets sing, and breathe in the freshest air on the planet. The air was still, but alive.

They lived a good life.

Recently I received an email from Andrew Devine, Community Outreach for the

Here is what he had to say:

"Hi Denise,

I came across the Nobody Has Ovarian Cancer site while searching for organizations to reach out to about mesothelioma cancer. It's really great how you used your story to reach out to other women. Although it's rare, mesothelioma in the stomach can metastasize to the ovaries. This type of mesothelioma is often mistaken for ovarian cancer in CT scans, which is unfortunate for early diagnoses and treatment.

I contacted you because I’m part of the Community Outreach team at Mesothelioma Guide, and we are a new site reaching out to the community to provide up-to-date support to mesothelioma patients and family members. Essentially, we’re doing the same thing you are, helping people understand health issues, giving them someone to talk to and how they can be proactive about it, just in a different way."

I was surprised to learn of this possibility, that mesothelioma could be mistaken for ovarian cancer. I did not even know that there are different types of mesothelioma.

I am very thankful to Andrew for revealing this important, but rare cancer danger, so that it can be shared with you.

Please follow this link to learn more:

    I love you Grandpa, hope that I see you in heaven some day.

Below I have pasted a link and partial abstract from the The National Center for Biotechnology Information about this type of cancer.

Malignant peritoneal mesothelioma presented as peritoneal adenocarcinoma or primary ovarian cancer: Case series and review of the clinical and immunohistochemical features

Performing your original search, mesothelioma ovarian, in PMC will retrieve 2124 records.
Int J Clin Exp Pathol. 2012; 5(5): 472–478.
Published online 2012 May 23.
PMCID: PMC3396062

Salih Taşkın,1 Yeliz Gümüş,1 Saba Kiremitçi,2 Korhan Kahraman,1 Ayşe Sertçelik,2 and Fırat Ortaç1
1Departments of Obstetrics and Gynecology, Ankara University School of Medicine, Ankara, Turkey
2Departments of Pathology, Ankara University School of Medicine, Ankara, Turkey
Address correspondence to: Dr. Salih Taşkın, Ankara Üniversitesi Tıp Fakültesi, Kadın Hastalıkları ve Doğum Anabilim Dalı, 06100 Cebeci, Ankara, Turkey Tel: +90 532 3925195; Fax: +90 312 3203553; E-mail:

Diffuse peritoneal malignant mesothelioma is a rare, progressive, and ultimately fatal disease and it can present as primary peritoneal carcinoma or ovarian cancer. Differential diagnosis is important to establish appropriate management. In this article the clinical presentation, immunuhistochemical and histopathological features of 8 diffuse peritoneal malignant mesothelioma cases presented as peritoneal carcinoma or ovarian cancer are evaluated. According to findings of all reported cases, we concluded that clinical distinction of malignant mesothelioma from ovarian cancer or peritoneal adenocarcinoma is very difficult. Differential diagnosis is reliably achieved by immune profile of the tumors with a systematic approach of both positive and negative mesothelioma markers.