Cancer Survivors Course - Houston, Oct 2010

Cecile Louise

I attended the 2010 Endometrial & Other Uterine Cancers Survivors Course in Houston this past weekend, which was sponsored by the Gynecologic Cancer Foundation – www.thegcf.org & www.wcn.org – through partnership support from MD Anderson. 12 doctors spoke, some from MD Anderson, but some who had flown in especially for this event. Lots of good stuff and great networking with our Sister-Warriors...I'll have to share what I learned in bits.

I was very excited to hear the announcement by Dr. Karen Lu regarding the formation of “The Uterine Cancer Network for Endometrial & Other Uterine Cancer Survivors”:

The goals:
1. To establish a community of women diagnosed with uterine cancer, their families, friends & caregivers, clinicians and researchers to create dialogue & share knowledge.
2. To bring awareness to steps women can take to prevent uterine cancer through healthy lifestyle practices, including weight management, & knowledge of inherited risk factors
3. To inform women about the symptoms of uterine cancer, especially endometrial cancer, so that it can be detected at its earliest stages
4. To alert women to the importance in seeking care first from a gynecologic oncologist when uterine cancer is suspected or diagnosed.
5. To address issues of importance to the survivorship community
6. To raise funds for uterine cancer research, education and support

The lead contact of this Network is Marsha Wilson, who can be contacted at mwilson@thegcf.org or at 301-332-0117. I think some of us have attempted to contact her previously – this may be a good time to give her another shout.

The need for advocacy in Uterine cancer research was strongly voiced - I was encouraged to write my congressman about the need for more research into Uterine cancers. I think others here have spoken about reaching out to celebs like Fran Drescher and Dr. Oz - wouldn't it be great it we could all join our voices together and shout from the mountaintops? ...does anyone have any idea of what a letter like that should look like? Maybe someone has a template or something? It would at least be a start.

I was happy to be able to talk with Dr. Lu, as well as a couple of other doctors, about our amazing community of survivors here on this board. They seemed very excited about tapping into the power and wealth of experience that can be found on this board, so I have high hopes that someone will start checking us out here and using our vast knowledge/experience to help kick research into gear!!

More later...

Love,
Cecile

Always Hopeful

Thanks for attending
Dear Cecile,

Thank you so much for attending the Survivors Course at MD Anderson this past Saturday. Having looked at the agenda, I can certainly understand why you will only be able to fill us in a little bit at a time. You mind must be super-saturated!!!

It is encouraging to read the goals of the Network you wrote about, especially #6: To raise funds for uterine cancer research, education and support. Money needs to be raised so that studies can be done and then word can get out to the public!

Looking forward to hearing more...

Peace and hope, JJ

kkstef

Thanks!
Cecile....it was so good to get Chapter One of your seminar experience. I was very impressed with the goals that were identified. PLUS great that you could urge physician's to look at this discussion group to hear what our issues REALLY are! I think some would be quite surprised!

Look forward to the next Chapter when you have time to collect your thoughts. It must have been a very exciting experience!!

Many thanks for being our ambassador!

Karen

daisy366

kkstef said:

Thanks!
Cecile....it was so good to get Chapter One of your seminar experience. I was very impressed with the goals that were identified. PLUS great that you could urge physician's to look at this discussion group to hear what our issues REALLY are! I think some would be quite surprised!

Look forward to the next Chapter when you have time to collect your thoughts. It must have been a very exciting experience!!

Many thanks for being our ambassador!

Karen

Go Cecile!!
Thanks for attending. Do you live there??

I kept getting invites and responded with request that they do a web-based seminar so we could participate via phone or skype. But no response. Hopefully in the future this will be more friendly and accessible to patients who can't hop on a plane to Houston!!

Thanks for telling them about this board. It has been wonderful for me.

Mary Ann

norma2

Thanks for representing us, Cecile
I am so glad you got to attend. MD Anderson has a monthly Uterine Cancer Group. I have attended several of them. Each month is a different topic.
I met Dr Lu last year at one of the Uterine Cancer Group meetings. I was impressed with her caring attitude. She spent a whole hour answering questions for the group.

Great idea for an advocacy group for uterine cancer support. I will write my congress representative.

Cecile Louise

A little more...
It was a very interesting day! I am very glad to have had the opportunity to get the word out about us to researchers & doctors, and other Sister-Warriors as well. I’m always surprised that our existence here is so little known!
I do, indeed, live in Houston! And, Norma - I would love to attend one of the group meetings! did you meet Florence?

I wrote in another thread about what I learned about us and our diet/exercise habits – here are a a few more snippets from the day:

Endometrial and other uterine cancers:
Are the most commone gynecologic malignancy
Have increased 30% in incidence in the last 20 years - BUT- NCI research $ are decreasing (2008):
uterine = $17.1 million – compared to breast = $572.6 million & ovarian = $100 million
Studies for rare tumors are few
The good news, though, is that advances are being made:
Minimally invasive surgeries are becoming more common
A more targeted approach to radiation therapies is proving more effective and less damaging
Novel agents are being tested for treatment of advanced endometrial cancer
Research into biologic therapies for recurrent disease is promising
Developing a health strategy for Survivors (quality of life, exercise, stress management, importance of hope) is being looked at very closely.

Dr. Barakat from Memorial Sloane-Kettering Cancer Center in New York talked about high-grade cancers (serous, clear cell, squamous, sarcomas, etc). These cancers account for 20% of all uterine cancers, they tend to behave aggressively and are more common among African Americans) He emphasized the need for more research (a common thread among all the speakers), especially the need for participation in randomized trials to determine effective therapies.

Dr. Jubilee Brown from MD Anderson spoke about clinical trials & future treatments, noting that we can find clinical studies at National Cancer Institute (NCI), American Cancer Society, foundations such as GCF & OCRF and local institutions, like MD Anderson.
Clinical trial participants are newly diagnosed or have recurred.
Those who choose to participate in clinical trials
Have access to new drugs & interventions
Receive close, standardized monitoring
Take an active role in their health care
Are among the first to benefit from new treatments, which may be better than what is currently out there
However, the logistics may be burdensome, side effects can be largely unknown and, of course, the new approach may not work.

Motto: Research Cures Cancer!

There are a couple more topics I’ll report on as I’m able.

Love,
Cecile

Always Hopeful

Cecile Louise said:

A little more...
It was a very interesting day! I am very glad to have had the opportunity to get the word out about us to researchers & doctors, and other Sister-Warriors as well. I’m always surprised that our existence here is so little known!
I do, indeed, live in Houston! And, Norma - I would love to attend one of the group meetings! did you meet Florence?

I wrote in another thread about what I learned about us and our diet/exercise habits – here are a a few more snippets from the day:

Endometrial and other uterine cancers:
Are the most commone gynecologic malignancy
Have increased 30% in incidence in the last 20 years - BUT- NCI research $ are decreasing (2008):
uterine = $17.1 million – compared to breast = $572.6 million & ovarian = $100 million
Studies for rare tumors are few
The good news, though, is that advances are being made:
Minimally invasive surgeries are becoming more common
A more targeted approach to radiation therapies is proving more effective and less damaging
Novel agents are being tested for treatment of advanced endometrial cancer
Research into biologic therapies for recurrent disease is promising
Developing a health strategy for Survivors (quality of life, exercise, stress management, importance of hope) is being looked at very closely.

Dr. Barakat from Memorial Sloane-Kettering Cancer Center in New York talked about high-grade cancers (serous, clear cell, squamous, sarcomas, etc). These cancers account for 20% of all uterine cancers, they tend to behave aggressively and are more common among African Americans) He emphasized the need for more research (a common thread among all the speakers), especially the need for participation in randomized trials to determine effective therapies.

Dr. Jubilee Brown from MD Anderson spoke about clinical trials & future treatments, noting that we can find clinical studies at National Cancer Institute (NCI), American Cancer Society, foundations such as GCF & OCRF and local institutions, like MD Anderson.
Clinical trial participants are newly diagnosed or have recurred.
Those who choose to participate in clinical trials
Have access to new drugs & interventions
Receive close, standardized monitoring
Take an active role in their health care
Are among the first to benefit from new treatments, which may be better than what is currently out there
However, the logistics may be burdensome, side effects can be largely unknown and, of course, the new approach may not work.

Motto: Research Cures Cancer!

There are a couple more topics I’ll report on as I’m able.

Love,
Cecile

Thanks again
Dear Cecile,

Thank you so much...again. The dollars not spent on research for uterine cancer are staggering! It seems that we just don't count!

My gyn/onc recently told me about meeting Dr. Oz on one of the walks for breast cancer. She told him in no uncertain terms (she is a spunky one) that more had to be done for all the gyn cancers...including the high grade types and others, eg., vulvar. She knows him from when her husband was a resident or fellow and point blank told him to use his airtime to disclose the disparity in research $$$! I just love that lady!

Peace and hope, JJ

Cecile Louise

and a little more - Stress
“For many years, anecdotal evidence & clinical observations have suggested that exposure to psychosocial stress can affect disease outcomes in immune-related disorders such as viral infections, chronic autoimmune diseases and TUMORS.”

- Stress has been shown to cause and increase in DRC (DNA Repair Capacity, which is central to maintaining a normal cell cycle) & regulation of cell growth, suggesting stress causes DNA damage
- Defective DRC is one of the factors responsible for carcinogenesis
- Animal research indicates stress is associated with tumor progression
- Stress produces decreases in the immune response. (cell-mediated immunity)
The strongest evidence is that stress affects recurrence of disease - it is not well understood how stress affects cancer progression –there is virtually no evidence that stress “causes” cancer. Studies over the last 30 years have produced conflicting results – a direct cause & effect relationship has not be proven.
More info can be found here: http://www.nimh.nih.gov , http://www.womenshealth.gov, & http://www.womenshealth.gov/faq/stress.htm

Cecile Louise

Exercise & Nutrition
I moved this from it's original thread in order to keep all the "Cancer Survivors' Course" stuff together

"Exercise has gained recognition as an effective supportive care intervention for cancer survivors, yet participation rates are low." – National Institutes of Health

Another bit of info from the course I attended that I found interesting is that studies show that, compared to Survivors of other cancers, Survivors of endometrial & other uterine cancers are the least likely group to modify or alter their nutritional & exercise habits after diagnosis. And no one knows why. There's plenty of data that suggests that eating right and exercising improves our quality of life and possibly even survival rates, but for some reason, we as a group are not availing ourselves of the potential benefits of better nutrition and exercise. Food for thought (pun intended, haha).

Love,
Cecile

Ro10

Cecile Louise said:

Exercise & Nutrition
I moved this from it's original thread in order to keep all the "Cancer Survivors' Course" stuff together

"Exercise has gained recognition as an effective supportive care intervention for cancer survivors, yet participation rates are low." – National Institutes of Health

Another bit of info from the course I attended that I found interesting is that studies show that, compared to Survivors of other cancers, Survivors of endometrial & other uterine cancers are the least likely group to modify or alter their nutritional & exercise habits after diagnosis. And no one knows why. There's plenty of data that suggests that eating right and exercising improves our quality of life and possibly even survival rates, but for some reason, we as a group are not availing ourselves of the potential benefits of better nutrition and exercise. Food for thought (pun intended, haha).

Love,
Cecile

Cecile thanks for sharing
It sounds like the Cancer Survivor's Course was very beneficial for you. I really appreciate you sharing some of the information you learned. It is a shame so little research money is spent on uterine cancer. September was Gynecological Cancer month, and I saw very little advertising or information about it. October is Breast Cancer month and there is information and pink items everywhere. Maybe someday Gynecological Cancer will be as well known. I got an e-mail yesterday that Fran Drescher was on the Early Show this morning, but unfortunately I did not read the e-mail until this afternoon, so I did not get to see the show. Did anyone else see the show.

llight

Cecile Louise said:

Exercise & Nutrition
I moved this from it's original thread in order to keep all the "Cancer Survivors' Course" stuff together

"Exercise has gained recognition as an effective supportive care intervention for cancer survivors, yet participation rates are low." – National Institutes of Health

Another bit of info from the course I attended that I found interesting is that studies show that, compared to Survivors of other cancers, Survivors of endometrial & other uterine cancers are the least likely group to modify or alter their nutritional & exercise habits after diagnosis. And no one knows why. There's plenty of data that suggests that eating right and exercising improves our quality of life and possibly even survival rates, but for some reason, we as a group are not availing ourselves of the potential benefits of better nutrition and exercise. Food for thought (pun intended, haha).

Love,
Cecile

Thank you !
Thanks Cecile, for sharing and all your posts. I especially appreciate this post on Exercise & Nutrition (and the one on Stress, too. I've read the same before). All of this is very validating for me to read. It sounds like a great conference. Thank you again.
llight

maggie_wilson

thanx so much, cecile

i really appreciate your diligent reporting back to us re: the conference. it seemed exciting and validating and hopeful for the most part, except for the tiny amount of funding gyn cancer gets. geeze.....please keep us informed as you debrief the conference, it's good to hear what the doctors and others are thinking.

sisterhood,
maggie