Global Seminar  Mandarin-speaking Breast Ca Support Groups

This report was originally written for Susan G. Komen for the Cure. Ms. Fong has kindly share it with us.

Global Seminar of Mandarin-speaking Breast Cancer Support Groups

Hosted by: Taichung Kaihuai Association in Taiwan

Report written by Rui-Yu Fong

The goal of the Seminar is to promote the cooperation among Mandarin-speaking breast cancer support groups and the establishment of a global coalition for better service to breast cancer survivors worldwide.

The seminar has definitely reached its goal by inviting representatives from 35 Mandarin-speaking breast cancer support groups around the globe to attend the seminar (117 people attended).

The representatives are from Taiwan (16 groups from different cities, i.e. Taipei, Taichung, Kaohsiung, Yilan, Changhua, Chiayi, Penghu, Linkou), China (5 groups from Beijing, Shanghai, Guangzhou), United States (5 groups from CA, NJ, NY, TX), Hong Kong (5 groups), Singapore (2 groups), Malaysia (1 group), Macau (1 group), and one group from Korea.

After the seminar, we’ve learned what each groups were, where they were from, how to contact them, and what were the services offered to cancer survivors and their family members by each group.

We are now able to refer cancer survivors to appropriate groups according to their location and the language they speak. Survivors can have access to Chinese printed materials that were related to cancer in general, surgery, treatments, chemo, radiation, side-effects, hormone therapy, lymphedema, exercises, etc.

All groups were able to get some information from other groups, i.e. journals; newsletters; mission statements; books about personal cancer fighting experiences, books for volunteers, books about chemo drugs, books about intimacy; pamphlets introduce each organization; exercise and yoga CDs, and more.

By getting to know other groups, we are able to not just refer patient, we can also learn from each other, share the resources that were available, exchange ideas about the way we organize activities/programs and further improve the services that we are offering to cancer survivors/family members now.

From this point of view, the seminar had achieved the goal of promoting the cooperation among Mandarin-speaking breast cancer support groups and beyond.

I personally would like to keep in touch and had been in touch with some other organizations since the seminar had come to an end. I think it is very important for all of us to keep in touch and to know what each other are doing and to continue encourage each other in every way that we can. Serving breast cancer survivors are what we all have been doing and what we are about, the theme of the seminar express the best: Together, we are stronger.

As for the programs themselves:

The first and second days were almost all devoted to presentations by each individual group from different areas of the world. Since there were many groups and time is limited, each group didn’t have a whole lot of time to include all detailed services.

Here were some of the presentations that I really enjoyed and learned a lot from:

1) The presentation by ACS – Northern California Chinese Unit: they talked about their experience of Relay for Life. This is a very successful fund raising event by them. They invited breast cancer survivors to come and form groups at their Relay event, invite Chinese movie stars who were breast cancer survivors to be the guests. This is something we can definitely learn to do.

2) The presentation by HOPE Association: this organization was formed mainly by medical professionals, I think they have one of the most updated information on cancer in Chinese. One of their programs is the “Hope Art Studio”, cancer survivors learn to use art to express their feelings, whether it be angry, lost, hope or love, they were all drawn into their paintings.

I got a calendar compiled by cancer survivors, the arts really touched my heart. They were totally positive and make me felt they were full of sunshine.

I think this is a great program I’d like to try to incorporate into our program.

3) The presentation by Danyang Breast Care Forum: we all saw a short version of 15 minutes DVD, done by the founder, a breast cancer survivor herself and a director from China Beijing TV Station. Danyang Breast Care Forum is the first public, non profit web-site in China.

The DVD has touched everyone’s heart and soul. It’s about the stories of 10 breast cancer survivors. The original DVD was 300 minutes. When we finished viewing the DVD, almost everyone was crying. The story reminded us all of our own stories in some way.

I brought with me the short and the long version of the DVD. I’d like to show the DVD to our breast cancer survivors here in the USA. We have more and more breast cancer survivors that were originally came from China.

Before the seminar, personally I always had trouble gather information from China, but now I have some, not just the DVD, also books about breast cancer and personal fighting breast cancer experiences, simple yoga exercises to prevent lymphedema. I believe these will be of great benefits to our breast cancer survivors here.

4) The presentation by Taichung Kaihuai Association: the presentation was presented by one of their volunteers who currently live in China. We learned how Kaihuai has crossed the ocean to spread their seeds to China, Hong Kong, Korea, Macao, US, etc.

They went to different areas of the world to showed and shared their experiences of how to serve breast cancer survivors, how to organize/recruit/train/retain volunteers. A lot of organizations got totally inspired and encouraged by Kaihuai in many ways. They not only set their eyes on serving breast cancer patients in Taiwan, they also wants to take care of breast cancer survivors in other parts of the world.

I learned from this presentation that first I need to have a strong hold in New Jersey, I definitely need to and want to set up a support group just for breast cancer survivors (among all the cancer survivors that we served, 1/3 of them were breast cancer survivors).

I need to have a strong home base first, continue providing the services that we are providing now, and add on more gradually.

I realize the importance of recruiting more devoted volunteers. It’s not just more volunteers but also the quality of our volunteers so we can offer more services and with depth to meet the survivor’s needs and requirements.

5) The presentation by Kaihuai about accompanying recurrent breast cancer patients: the presenter talked about different types of services they offered to recurrent breast cancer patients, be it workshops about life and death, an afternoon tea party, or hospital visits.

Kaihuai did a great job in supporting recurrent patients. Sometimes people don’t want to talk about recurrence, but it’s the fact of life, and it is very real among breast cancer patients.

I myself is a recurrent breast cancer survivor, one thing I really wants to do is to provide services to recurrent breast cancer survivors. This presentation shed a light on what we can do here, maybe start small. At least we can do hospital and/or home visits.

Even though we are doing this right now here at NJ, I think there are ways to improve it.

I hope we can do some workshops in the future. I find it difficult in finding the right resources here in the United States, i.e. social workers, psychologist and psychiatrist who speaks Mandarin, so the patients can really express how they feel in Mandarin.

I brought back some DVDs that talk about hospice program in Chinese, it covered four stages in life: spring, summer, autumn and winter, that reflects our life from birth to death.

A lot of Chinese don’t want to talk about death, it’s a forbidden topic for a lot of people in so many ways. But death still comes even you don’t talk about it. I hope the DVD will come in handy when in needs in the future.

About the keynote speaker: I especially enjoyed the presentation of “The Life adjustments after breast cancer diagnosis for Chinese-Americans in the United States”: I think overall it’s a great presentation, it was well prepared by the presenter, and full of humor and a lot of information.

According to the small sample (21 breast cancer survivors), the research result showed that for Chinese-American here in the USA after breast cancer diagnosis, physically and socially they adjusted pretty well, while psychologically and spiritually not as well.

The side-effects related to treatments were the worst adjusted to Chinese-Americans. They worry most about no one to take care of their young children and older parents. Their best supports are from: friends, family, church members and spouse. They use more of the following to get adjusted: positive attitude, find the positive meaning behind being diagnose with breast cancer, find practical help, accept the facts and seek emotional support.

Chinese-Americans usually don’t use humor, hide, negativity, alcohol or drug to get adjusted to breast cancer diagnosis.

Even though the samples were very small, we’ll need more research to confirm the study. However, it’s good to know that Chinese-Americans here in the US adjusted well overall to breast cancer diagnoses, in spite of language barrier and cultural differences.

The third day of the program was devoted to sub-group discussing: there were 4 sub-groups.

* Topic for group 1: How to establish the cooperation among breast cancer support groups, businesses, government and medical fields.

* Topic for group 2: Problems encountered and resolution by breast cancer support groups and how to raise funds and other resources by breast cancer support groups

* Topic for group 3: Ways of serving special needs breast cancer patients (including recurrent patients, young survivors, new immigrants).

* Topic for group 4: Future cooperation among global Mandarin-speaking breast cancer groups.

All participants break into sub-groups and discuss among themselves experiences that were related to the topic for a certain period of time. When the time is up, each sub-group will have a host to report back to the whole group, and all the conclusions were compiled for all for review.

It was very efficient and seemed like all groups are encountered more or less the same kind of problems when in operating or providing the services. Some wonderful/ useful/practical/effective suggestions/ideas/resolutions came up from the discussions. Since each sub-group were comprised of members from different organizations. We all learned from one another a great deal.

Statement of how the program is relevant to breast health:

The seminar has focused almost two whole days for each group to do presentations about their services to breast cancer survivors and the general public. Almost all groups put a lot of efforts into public education, teaching the general public the importance of breast health.

We use our own experience as breast cancer survivors to teach the general public how to do monthly breast self-examination, reminding the general public the importance of mammography, as importantly as the yearly clinical examination by a physician.

However, some countries need to work harder on this part. Whether it’s due to insurance issue, or due to the government not putting enough effort in emphasizing the importance of breast health, or personal financial predicaments, there are still a lot of hurdles to conquer in the future.

I think that particularly in the United States and Taiwan are doing pretty good about breast health. We saw presentations by groups of breast cancer survivors wearing breast forms to high schools, vocational schools, and other business organizations to teach people how to do breast self-exam.

These can serve as models to some other countries to do the same. We need to prevent breast cancer, one of the best ways is to do monthly BSE, yearly mammogram and see a physician. Early detection is the best weapon.

We need to not just work hard among our breast cancer support groups, we need to influence the government. The government can do so much more for the health of the general public. We need to have more advocacy groups in other country, so we can influence the researchers, the funds and the government.

We definitely need more training on the advocacy part, or maybe just to introduce the concepts of advocacy into other countries.

Specifics of participation and benefit to the applicant as well as Statement of need

As stated above I personally gained so much more knowledge from other groups experience sharing. After the seminar, we all agreed that this type of seminar should not stop after just this one time, we all want to continue to have meetings just like this first one.

So we all agreed that next year we’ll have the second meeting. Still hosted by Kaihuai, the time will be from Nov. 27-29. Again, we’d like to have leaders from different groups to attend the seminar. Some of the important agreements among the participants are as follows:

* Agreed upon to establish a permanent organization to unite the strength from all groups, the official English name is yet to be decided, but we have already agreed upon the Chinese name for the permanent organization.

* The second meeting will still be hosted by Kaihuai, the dates will be from Nov. 27 – 29, 2007. l Each group will have to identify the true leaders, only two leaders from each group will attend the meeting for 2007. Will also consider inviting social workers to attend next year’s meeting, total number of attendees will be around 120 people.

* The theme for 2007 will be volunteer related topics, including recruitment, training, retaintion. The contents of the meeting will be designed by Kaihuai first, then it will be decided by the 7 working members and the host Kaihuai.

* From 2008, each group will take turns hosting the global meeting.

* Establishing the working group to work on all relevant issues: 7 members were being selected among all groups. The seven members are: Zhr-chu Hu from Beijing yksl, China; Teresa Li from Joy Luck Club of ACS – NCCU, USA; Mei-Sheng Shao from Hong Kong Breast Cancer Alliance, Hong Kong; Rui-Yu Fong from ACS – Asia Initiatives New Jersey, USA; Lucy Young from CCHC, USA; Grace Chia from Kaihuai, Taiwan; and Doris Wee from Singapore Cancer Society, Singapore.

* We agreed upon to set up a web-site to connect all organizations. Teressa Li will help with setting up the web-site.

* Translations will be handed to Rui-Yu Fong and Sharon Young.

* Our 7 members committee meeting will hold a teleconference every three month. The next teleconference will be in March of 2007.

* Hoping to set-up the web-site by January of 2007. The structural framework will reference to Taichung Kaihuai’s organizational chart and made any necessary changes to fit our mission needs.

* When the web-site has any conclusive results, we’ll start looking for funds.

* The resources of the funds will be raised by the working group members, and Furjen Deng, Ph. D. will help with the grant applications.

* We are in the process of inviting candidates to be our advisors, we need inputs from all participants.

The organizations from the USA also went to visit a few other organizations from Dec. 4-5, 2006. Including (1) Formosa Breast Reconstruction Foundation, Taiwan. (2)Hope Society for Cancer Care (3) Hospice Foundation of Taiwan (4) Catholic Sanipax Socio-Medical Service & Education Foundation in Linkou and Taipei city.

At the Formosa Breast Reconstruction Foundation, we listened to a presentation by a plastic surgeon, who was very knowledgeable in the reconstructive surgery for breast cancer patients, we also went to visit a breast cancer patient who just had a reconstructive surgery done a few days before.

The insurance of Taiwan doesn’t include reconstructive surgery, so the general public has to pay for the surgery out of their own pockets, which is a lot of financial burden for so many breast cancer patients. We need to work harder and work closer with the government so the insurance will cover this type of surgery in the future for breast cancer patients.

The Hope Society for Cancer Care is pretty amazing, they have all kinds of cancer information in Chinese. I took back over 20 booklets, and numerous booklets regarding cancer treatments, different types of cancer.

This is a treasure for us when it comes to information printed in Chinese. We are currently receiving their newsletter from the mail.

We can get all kinds of Chinese information from Hope or download from their web-site. For the patients here, this is important information.

I also enjoyed our visit to the Hospice Foundation of Taiwan. We watched a few DVD, covered the topic of living and dying. They were very educational to us all. I also bought a few DVDs for our future references from them. I hope maybe one day in the future we can all open our hearts and souls to talk about life and death, maybe when we have more open communications about death, it will be easier for us to accept death.

Also we need to have more education about hospice/palliative care, so cancer patients don’t have to suffer and can continue to have dignity along the way.

Originally, I would like to do the following at the seminar:

* Tap into the breast cancer supporting resources in Taiwan, and bring back any relevant information printed in Mandarin.

* Learn from different groups to provide better services to breast cancer survivors.

* Learn better ways to promote breast cancer support group in order to reach more breast cancer survivors and bring awareness to the local communities in New Jersey.

u Learn more ways to education breast health among the Chinese community.

I think I learned so much more than I originally expected as you also can tell from what I have written in my reports, I totally got inspires by the seminar, the people attended the seminar and how much more we can do for our breast cancer survivors and our local communities.

Life is not perfect at times, but we can always try to improve it; if you don’t try, you wouldn’t know what the outcome will be. Just like all of us, we are doing what we are doing, but we can all try a little harder, maybe try something different, something new, give a little more of your heart and your time; who knows, you might just really get what you wished for.

Rui-yu Fong

Patient and Family Services

ACS-Eastern Division, New Jersey Chinese Unit

(973)334-2249 x 1

Submitted 2006

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