Strength - Do you Have It?

When I met with the long-term survivor's support group the other night I decided to ask 1 question I usually ask.

The question was -did you feel that you had a positive attitude, optimism, self-determination, inner strength or faith that helped you survive. They all agreed yes. Clinically I see this all the time and now we actually need to do the research to prove it.

As I was thinking about this and looking at many articles and books I use for this blog I was surprised to see an anonymous survivor describe how cancer means your body's outer strength will now depend on finding your innner strength. It was so well put.

She also advises to not become discouraged. She recommended relaxation and positive thoughts and make yourself your number 1 priority. Lastly, she recommends to remain positive and optimistic by knowing the facts.

As we end you may wonder why I chose this photo, but to me it represents the beautiful inner strength of us all.

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Long-Term National Cancer Survivors' Issues

Despite the many advances we have made in treatment of cancers we still have not made many in the area of long-term survivoship.

Tonight I agreed to lead a support group of indivdiduals who have survived cancer several months to 18 years. It was a large interactive group and we had some great discussions. Everyone interacted. They all had different types of cancer but it was amazing how similar their long-term issues were.

We divided the discussion into 4 sections. What are the long term issues from physical well being? What are the issues from a psychological (emotional) point? What are the isses from a social aspect (financial, isolation)? And lastly what are the issues related to spiritjual well-being (Why me? What is the meaning of my life?)?

I have done this exercise with many other groups and what is most interesting is: 1) we still have very little to help with these isses, and 2) despite the type of cancer the issues are usually very similar.

My hope is that one day we will have a surviorship clinic at every cancer center to deal with these issues.

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Avastin to Treat Gliomas

Avastin is a cancer drug that has been shown and been approved to treat lung and colorectal cancers. A new study now has shown that Avastin can slow the growth and shrink tumors of a common form of brain cancer called glioma. This is exciting news.

A larger clinical trial has already been started which will involve some 160 patients to find out just how much of an improvement they can have when fighting brain cancer with Avastin and no other drug.

The results of this initial study are very encouraging. We often do not have much new and exciting news to share about brain tumors.

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Reply to George and Merkle Cell Cancer

George is the Administrator for the Merkel Cell Cancer group, an online support group within Google Groups. The group sent questions and contacted the main office at the Women's Health Center of Excellence at Wake Forest University Baptist Medical Center, where I work. Joining this support group requires a user to identify themselves by first name or initials and describe their merkel cell cancer experience. Membership is dependent upon participation in the group. Members can openly share their stories as a patient with Merkel cell carcinoma (MCC), or as a family member supporting someone with MCC.

The term carcinoma is malignant by definition: carcinomas invade surrounding tissues and organs, and may spread to other areas of the body and organs, such as a lymph node, the liver, lung, brain, or the bones. An infrequent but highly malignant neoplasm (various malignant neoplasms are characterized by the proliferation of anaplastic cells that tend to invade surrounding tissue and spread to new body sites), MCC is a type of skin cancer. Characteristically it starts in a sun-exposed area (of the head, neck, arms or legs) in Caucasians 60-80 years of age as a firm, painless, shiny lump that can be red, pink, or blue in color and vary in size from less than a quarter of an inch (a half cm) to more than two inches (5 cm) in diameter.

The tumor (an abnormal growth of tissue resulting from uncontrolled, progressive multiplication of cells and serving no physiological function) grows rapidly and often metastasizes (spreads) to other parts of the body. Even relatively small tumors are capable of metastasis, particularly to the regional, nearby lymph nodes (any of the small bodies located along the lymphatic vessels, particularly at the neck, armpit, and groin, that filter bacteria and foreign particles from lymph fluid). During infection, lymph nodes may become swollen with activated lymphocytes. Merkel cell carcinoma follows an aggressive course like that of melanoma, and has a predilection to spread to (in order of frequency) liver, bone, brain, lung, and skin. The prognosis (outlook) is accordingly poor.

There are limited support groups for merkel cell. The Merkel Cell Cancer group referred to in this post, headed by George, http://groups.google.com/group/merkelcell, is a closed discussion group with no commercial influence or interest. The membership is open to anyone that has had the Merkel Cell Cancer experience as either a patient, family member, or caregiver of a patient. The public membership statement associated with this Merkel Cell Cancer group explains that this is a forum "where you can openly discuss your experience with MCC, as a patient with MCC, or a family member supporting someone with MCC. We are not health care professionals nor are we offering medical advice, just the experience of having this cancer." Joining this group requires approval from the manager - George.

I hope this helps those who have to deal with MCC in one way or another. George, I appreciate the fact that you contacted the Women's Health Center of Excellence at Wake Forest University Baptist Medical Center and asked about support gtoups. For those of you interested in learning about support groups, please read the posts I have dedicated to this topic:

• Valentine's Day and Support
• Any Newcomer's to Support Groups?
• How Can You Find A Support Group?
• How To Find An Online Support Group
• How To Start a Support Group

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How To Start a Support Group

Sometimes individuals are interested in a support group but there is nothing offered in their area, yet there are other individuals who are traveling along the same cancer journey. Do not be afraid to start a group, but be realistic. It takes awhile to grow the numbers. But, a support group can be helpful even if it is only 3-4 people.

I have listed below some suggestions if you decide you want to start a support group.

1. If there is one at your doctor's office or hospital, find out who leads it and talk to them about how they got it started.
2. If there is a psychologist, nurse, or social worker from whom you've received treatment, ask them for advice if they have ever run a support group.
3. Think about having an expert help you (as a volunteer) for the first few months to start the support group.
4. Make some decisions (read my past few posts) about what type of support group you want.
5. Find a place to hold the group. It generally should be a neutral place - not your home. Many town halls, local schools and churches will provide space for free.
6. Decide how you will advertise. You can invite 2-3 people you know with cancer and ask them to try to bring at least 1 other person they know with cancer. You can also open it to family members and friends early on or always. Will you distribute flyers at your church, grocery store etc.? Always be sure to ask if you can post or distribute flyers as many places have rules against this.
7. Plan the first few meetings for 90 minutes so you can do peer support (and education if you want), but also begin planning long-term for the group (e.g. what will be the meeting place each time, who will be included, do you want an expert there).
8. Start only with about 8 people so the planning can go well. You can always invite about 12 and then 8 will show. If you have too many people in the beginning, it will be difficult to make decisions.
9. Decide if there needs to be clear roles - like 1 person always sends a reminder, 1 person distributes flyers etc.
10. You may wish to go to a bookstore or amazon.com to find some basic books on starting support groups. For Amazon, I went to their site and typed in support groups. This is the link I received http://www.amazon.com/s/ref=sr_pg_1/102-7418529-0634543?ie=UTF8&keywords=support%20groups&rh=i%3Aaps%2Ck%3Asupport%20groups&page=1. When I did this it listed several paperback books on effective support groups or how to lead a support group.

Be proactive. Start a group if one is needed. Get help starting it. If you are finding there are no established support groups that are appropriate for you in your community than there will be others feeling exactly as you do.

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Any Newcomers to Support Groups?

On my previous post I discussed some of the different types of support groups. But there are many other facts and questions to ask about support groups. One aspect that is essential is what do you do if you are a newcomer?

Regardless of the type of support group you decide to participate in, be sure it is CONFIDENTIAL! You should feel everything you say stays within the group and is not shared outside. What you share will probably be intimate and you need to be assured that you and your information will be shared with respect.

If the privacy and confidentiality is violated then the group needs to discuss this and resolve it within the group. If there is a facilitator they can help. Members of the group could get together between meetings for coffee and share more about themselves but not about other members.

It is best to have ground rules in support groups and to tell each new member what they are. For example: 1) Everyone has the right to be heard, 2) Everyone should listen carefully when 1 person is speaking, 3) Only 1 person should speak at a time, 4) Everything is condifential.

If you find you are being upset by things discussed in the support group, you may want to try a different type of support group. If there is a group leader or facilitator, their style may differ. So you may want to assess their role and be sure that it is what you need. For instance, the group leader should help get the group back on track if they move into a nonproductive area. If you repeatedly feel like you have to be the leader but do not want to be, then make that clear to the group.

As a newcomer, go with an open mind. Try the same group twice and ask members of that group if there are other groups you should visit.

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Valentine's Day and Support

Although many people believe Valentine's Day has become too commercial or only commercial. I have tried to make it another day to think about friends and family that I love and who support me. And for individuals with cancer I am sure this may be even more true. Thus, I have been thinking this year about the "SUPPORT" part. We all need positive support in our lives. The type and people who support us may vary throughout the years or throughout your cancer journey, but you still need support.

Consequently, today I thought I might mention "support groups". There are many myths and misconceptions about support groups in general (whether for cancer or not). And I do agree they may not be for everyone. But, I do think if individuals do a little research they may find a particular type of support group may be helpful and different than what they think the "stereotyped support group" might be. I have started and run many types of support groups.

The best part about support groups is they can be designed to meet the groups' needs. Your first visit may be a bit daunting or uncomfortable. Try going, at least, a second time to make certain that a particular group is a good fit.

There are several types of support groups that fulfill the needs of different individuals. Below is a list, created by the American Cancer Society, of the different types of support groups that one can join:

• Type of Cancer: for example, breast cancer vs. prostate cancer
• Stage of cancer experience: for example, new diagnosis vs. recurrent cancer
• Treatment type: for example, bone marrow transplantation vs. chemotherapy
• Open membership: enrollment is not necessary, and one can come and go as they please
• Closed membership: enrollment is necessary and members are expected to attend each session
• Therapy group: group therapy moderated by a psychologist
• Peer support group: this group provides a comfort zone where individuals can share their experiences with one another
• Educational group: lecture sessions conducted by experts that center around medical information
• Coping skill group: members share the skills they've used when coping with different stagees of their cancer treatment
• Telephone support groups: group members meet through the telephone
• Support groups for children: groups for children diagnosed with cancer or groups for children whose family members are diagnosed with cancer

For more detailed information concerning the types of support groups one can attend, go to this page at the American Cancer Society website: Support Groups: General Information

Recommendations:
I have started and lead many groups. I often suggest to individuals with cancer (and/or family and friends) to at least try a support group or 2. Some individuals feeltheyy do not need it as they have a large family support network (20-50 people), or a large church network. I have seen all of the above types work well. I also like what I would call a combination support group. Where there is some peer support, but also some time for education or coping tips by a professional. This can be combined in each meeting or rotate so 1 month is education and then next is peer support. This can often be helpful.

Think about these options and respond with your thoughts and ideas and I will write more about support groups in the next few days.

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Another Good Resource: The Oncology Nursing Society

In addition to providing news and tips, science and how to cope and improve your physical, psychological, social and spiritual well-being I would like this to be a site that you can go to for other resources that are accurate and credible.

The one I would like to highlight is the Oncology Nursing Society. It is a professional organization of about 33,000 nurses dedicated to improving the lives of individuals with cancer. You can go to the webstite - www.ons.org. I have been involved for over 20 years. There are many ways to reach someone for help at ONS as seen below:

Oncology Nursing Society, 125 Enterprise Drive, RIDC Park West, Pittsburgh, PA 15275-1214
toll free866-257-4ONS ; local412-859-6100;fax 877-369-5497 and e-mail customer.service@ons.org.

ONS was started by a handful of nurses dedicated to cancer care. The first nurse to officially become an employee of ONS was an incredible nurse named Pearl Moore. With incredible commitment on her part, as well as others they developed this into one of the largest and most influcential specialty nursing organizations. Pearl retired after 30+ years, and we now have some new and exciting times with another incredible Chief Executive Officer named Paula
Rieger.

The website sponsored by ONS is very helpful and there are many areas that anyone can open and read (especially sections on sympoms like pain and fatigue). There are only a handful of areas that you cannot enter unless you are a nurse and a member (like the section where we are voting for our next Board members). But anyone at the ONS office will try to get whatever information you need.

Probably many of the nurses involved in your care are members of ONS and get a chance to attend 1 of the conferences each year. There is an annual conference in April/May (5000+ nurses attend), a Fall conference ( that is more focused and smaller - 2000+) and a conference every other year in the odd years for the nurse researchers (450+). That is the one I just returned from the research conference and I will begin to share the cutting edge research nurses are doing.

I would be remiss to end the column if I did not mention that we also have an Oncology Nursing Society Foundation. You can contact them at:
ONS Foundation125 Enterprise DrivePittsburgh, PA 15275
Phone (412) 859-6100Fax (412) 859-6163
foundation@ons.org

This is an amazing foundation that was started in 1981 by all of the oncology nurses and has raised about $17.6 million dollars since that. All of that money has gone to nursing educaton and research. They give out grants, awards scholarships and much more. With all the federal funding that is decreasing for cancer research and education, it is hoped that ONS can continue to fill that void. If you feel you had a wonderful experience with a cancer nurse that has helped you then you might consider sending a little note and a donation (there are no restrictions on the amount - every $5, $10, or $40 or $100 helps). The Director is Linda Worrall and the President is Kevin Sowers.

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Free Set of Papers On Cancer From New York Times

As I was searching for more new information on cancer and resources for us all to share I stumbled on an exciting free piece of information. The New York Times is releasing A free collection of articles about cancer published in The New York Times on many topics including breast cancer, chemotherapy, Hodgkin's Diseae, Leukemia.

If you have any interest regarding this free information go to: http://topics.nytimes.com/top/news/health/diseasesconditionsandhealthtopics/cancer/index.html?inline=nyt-classifier

The New York Times is well known and I have gone a read a few of these articles and feel they are worth looking at. It is nice they decided to group them and reproduce them at no cost.

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