Archive for September, 2008

Finding someone to talk to about facing our breast cancer diagnosis is no longer such a challenge.

Living Beyond Breast Cancer has trained volunteers for confidential calls. From their newsletter:

Do you want to talk to a woman who understands what you are facing? Consider calling the LBBC Survivors’ Helpline, a national, toll-free telephone service staffed by trained volunteers affected by breast cancer. Helpline volunteers are dedicated to offering guidance, information and peer support in a confidential setting. A woman affected by breast cancer will answer the phone live on Tuesdays from 11:00 am to 3:00 pm ET. At any other time, leave a message and a volunteer will return your call within 24 hours. Our personalized matching service connects you with women in similar circumstances. Spanish-speaking Helpline volunteers are available.

I previously wrote about another organization that has volunteers available all of the time:

Breast Cancer Network of Strength (formerly Y-Me) has a new online counseling program.

YourShoes has the country’s only 24/7 toll-free hotline staffed exclusively by trained peer counselors who are breast cancer survivors. These peer counselors are experienced in handling all types of questions related to breast cancer, and can talk with you about your feelings and concerns. They will make sure your questions are answered and give you the information you need in plain language. Call YourShoes at 800-221-2141.

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A Department of Justice press release dated September 17, 2008 said that the government will not oppose  a proposal by CEO Roundtable on Cancer that they develop the model contract language for clinical trials of potential new cancer treatments. The department found that the proposal would not be “anti-competetive.”  The press release described CEO Roundtable on Cancer as “a non-profit corporation.”

What the release did not say is that the “non-profit organization” CEO Roundtable is made up of heads of Big Pharma, a phrase that is often used to refer to companies with revenue in excess of $3 billion, and/or R&D expenditure in excess of $500 million.

Will Big Pharma’s control over what constitutes a clinical trial exclude non-pharmaceutical approaches, including the impact of nutrition and vitamins, to curing cancer?

WASHINGTON The Department of Justice announced today that it will not oppose a proposal by the CEO Roundtable on Cancer (CRC) to develop and publicize model contract language for clinical trials of potential new cancer treatments. The Department said the language is not likely to be anticompetitive and can be used to help increase efficiency in contract negotiations, potentially reducing costs and shortening the time needed to begin clinical trials.

The Department’s position was stated in a business review letter from Thomas O. Barnett, Assistant Attorney General for the Antitrust Division, to counsel for the CRC.

The CRC and the National Cancer Institute (NCI) will jointly lead the project to develop model language for clinical trials. The CRC is a non-profit organization whose goal is to make continuous progress toward the elimination of cancer as a personal disease and public-health problem. The NCI is the federal government’s principal agency for cancer research and training and is part of the U.S. National Institutes of Health.

The CRC requested a business review letter from the Division expressing its enforcement intentions regarding the CRC’s and NCI’s proposal to develop and publicize model clauses for use in clinical-trial agreements. Clinical-trial agreements typically involve three parties: a pharmaceutical or medical-device company known as a “sponsor”; a hospital, clinic, or university where the research is performed, known as the “research institution”; and the physician who is in charge of the trial, known as the “principal investigator.”

“Making the model language available to sponsors, research institutions, and principal investigators, as proposed by CRC, is not likely to reduce competition,” Barnett said in the letter. In the letter, Barnett explained that the “model language does not contain any provisions specifying prices or rates,” and that “[w]hether to use the language or any of its provisions will be left to the determination of each party acting independently.”

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My oncologist is at Rocky Mountain Cancer Centers. When I first went there, they gave me a bag full of things I was going to need.  It included a notebook where I could keep medical records, a calendar for tracking appointments, record of symptoms to tell the doctors, a place to file business and appointment cards, and information on breast cancer, treatment, diet, exercise, etc. 

I don’t know how I would have managed without it.  If you didn’t get a bag, you can order one through Bag It. Check out their website:

They have information online and the following is a list of bag tools and their sources:

NCI Publications:
Eating Hints
When Someone You Love is Being Treated for Cancer
Taking Time
Life After Cancer Treatment
Taking Part in Cancer Research Studies

NCCS Publications:
Teamwork – The Cancer Patient’s Guide to Talking With Your Doctor
Cancer Survival Toolbox – CD program

Three Ring Binder:
Paper and dividers for keeping track of information, test results and appointments
Business and Appointment Card Holder
Letter from BAG IT Founder and President
Feedback/Evaluation Form
Cancer Treatment Summary-Follow-up Care Plan Resources for survivorship after treatment

What is the bag all about?

The six publications, the CDs, and the binder directly address:

Quality of life issues:
Dealing with emotions like fear, anxiety, and loneliness
Discussing cancer with family, friends, and co-workers
Timely nutrition information
Adapting to changing relationships
Addressing caregiver needs and concerns
Making difficult decisions
Critical areas such as:
Talking with your doctor and making the most of office visits
Dealing with insurance concerns
Listing of national resources

The binder included in the bag is an effective empowerment tool.
It helps patients keep track of:
Copies of referrals
Lab work and reports
Blood work
Office visit questions, answers, and notes
Contacts and appointments
Summary and follow-up care

BAG IT is also available in Spanish

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Breast Cancer Network of Strength (formerly Y-Me) has a new online counseling program.

YourShoes has the country’s only 24/7 toll-free hotline staffed exclusively by trained peer counselors who are breast cancer survivors. These peer counselors are experienced in handling all types of questions related to breast cancer, and can talk with you about your feelings and concerns. They will make sure your questions are answered and give you the information you need in plain language. Call YourShoes at 800-221-2141.

Peer counselors can match you with a survivor who had a similar diagnosis or life experiences. You’ll be able to talk with someone who really understands your concerns–a woman or man who has been there.

I had a hard time finding someone to listen when I needed to talk about my deepest fears – would the cancer come back? Was I going to be able to keep working? What would happen if I couldn’t work, which would also mean I wouldn’t have health insurance? The next three years before I turned 65 and became eligible for Medicare were the years that the risk of recurrence would be highest. Other fears were that I would have to keep working at a job I didn’t like during the next few years, which might be my last.  Was this how I was going to have to spend my last years? But how could I change jobs now?

Other things that seemed critically important to me at the time were that I was having what I called, “cancer dreams” and I needed to talk about them – with someone who took them seriously. And I didn’t want to go through having this disease without being able to understand something of what it meant in my life.

I checked with my insurance company to see if they paid for counseling and was told they did only if I went to the local community mental health programs, so chronically underfunded and marginally staffed that their services were usually restricted to crisis response, drug and alcohol evaluations and other court ordered interventions.  Not where I expected to find a Jungian analyst or dreamwork therapist.

Eventually, I made an appointment to talk to a private therapist and spent $60 to fill the car with gas and drive out of town to her office, and paid her $80 for an hour of her time, during which we chatted about some of the women we both knew, discussed my cancer history, and then she asked me if I wanted to come back.  Not having ever been to a therapist before, I asked if she could tell me what we might accomplish if I returned, and I expected that she would describe the therapeutic process as she practiced it.  Instead, she said that would be up to me.

Maybe she thought I knew what I was doing. Or knew something about therapy. I think I should have gone to someone who regularly worked with cancer survivors. My mistake. That I made primarily because I tried to go to someone I could see in a 150 mile round trip or less, instead of the 300-mile round trip it would be to the city.

The other reason I didn’t feel that anything “happened” during that appointment was that I had just made the decision to accept a job offer, and leave the work that I didn’t think I could keep doing. This was such a huge relief, and had been such a hard decision to make (don’t know why now) that I just didn’t feel I had anything bothering me that I needed to talk about. That was just timing.

The same questions still exist: I have a birthday this week, and it will now be two years instead of three before I am old enough to get Medicare, another two years that I have to stay healthy enough to work in order to keep my health insurance — which costs $1,005 per month.  I went to a town hall meeting on what we could do to address the health care crisis, and the first comment from a man in our rural neck of the woods was that we should all take more personal responsibility.  I took some personal responsibility by not killing him on the spot.

It will be one more year that I am a cancer survivor. It will be one more year during that first 5 years after diagnosis that my chance of recurrence is highest.

As the three-month checkups that come back NED (“no evidence of disease”) the question of what will happen if I can’t work gets pushed to the back of my mind and I can practice living life without waking up every morning and thinking about cancer.

So I have never really talked to anyone about these things. I quit having what I called “cancer dreams.” I no longer feel like I have to understand immediately what this all means in my life.  But I also don’t want to get complacent and forget to ponder that. I still do not want to have had this disease without understanding how it has affected my life and what that means.

When I get anxious, I put on walking shoes and get out of the house as soon as I can and walk and breathe until I’m better.

I don’t get online to read breast cancer news and updates like I used to. It has been a couple of months this time.

I was glad to find information about the YourShoes program.  We can call any time of the day or night to talk to a trained peer counselor who is a breast cancer survivor.

Get more information about this program here.

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THURSDAY, Sept. 4 (Health.com) — The special terrors of the Iraq war have shone new light on post-traumatic stress disorder (PTSD) as it is suffered by U.S. soldiers. But medical patients undergoing arduous procedures and treatments can experience PTSD symptoms too, according to a California pain expert.

At the PainWeek conference in Las Vegas this week, Thomas Strouse, MD, professor of clinical psychiatry at UCLA, stressed the importance of minimizing pain, fear, and other trauma that accompany cancer treatment, in particular.

Cancer patients, Dr. Strouse says, may feel they are under terrifying physical threat, may feel a loss of control, and may experience prolonged pain or other discomfort such as profound nausea, laying the groundwork for PTSD.

According to Dr. Strouse, PTSD symptoms have been most clearly described in adolescent patients who relive the trauma of childhood cancer treatment when they have to go in for tests and checkups. But, he says, “It can happen in adults who have gone through arduous medical experiences as well. One of the big unanswered questions in PTSD research is: Why do some people exposed to a trauma get PTSD and others don’t?”

Source and complete article: Health News

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Another local breast cancer survivor and I are talking about starting a support group in town. We’re having coffee Tuesday morning to discuss it again. American Cancer Society has a book on facilitating support groups that we will read before we start. 

CancerCare has started online support groups. From their website:

Currently available groups. 

Groups for people with cancer:   
•Patient Group: Lung Cancer Patient
•Patient Group: Post Treatment Survivor
•Patient Group: Young Adults (Age 20-40) with Cancer
•Patient Group: Breast Cancer Patient
•Patient Group: Colorectal Cancer Patient
•Patient Group: Blood Cancer Patient
•Patient Group: Men with Cancer
•Patient Group: Women with Cancer
•Patient Group: Gynecologic Cancers

Groups for caregivers and loved ones:
•Caregiver Group: General Caregivers/Loved Ones
•Caregiver Group: Lung Cancer Caregivers
•Caregiver Group: Young Adult (age 20-40) who are Caregivers
•Caregiver Group: Pancreatic Caregivers
•Caregiver Group: Parents of a Child with Cancer
•Caregiver Group: Teen Caregivers

Groups for the bereaved:
•Grief Group: People Who Have Lost a Loved One   
•Grief Group: Partner’s Bereavement
•Grief Group: Parents Who Lost a Child to Cancer

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