Stage 4 Breast Cancer Survivor Created Group to Fill Void
Dian Corneliussen-James, one of the founding members of METAvivor, said the nonprofit group is working to bolster research on metastasized breast cancer and raise awareness of the fatal disease.
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Dian Corneliussen-James clearly remembers heading into surgery for her breast cancer.
She met with a mentor from SOS, Survivors Offering Sympathy. A member of the support group sat with her before the procedure, comforting her, calming her, letting her know what to expect.
They were there as she recuperated. She left the hospital with a big bag of gifts and get-well wishes. They were there to help with follow-up procedures, assuring her that everything was going to be OK.
Unfortunately, CJ, as she’s known to friends and others who have met her through METAvivor, the Stage 4 breast cancer support and research nonprofit group she helped form, she also remembers the day she went in for surgery to have a metastasized breast cancer tumor removed from her right lung.
She was alone. There were no gifts. No mentors.
“I remember thinking, ‘I have fallen off the pink pedestal and landed in a leper colony,’” she said. “They had nothing for Stage 4 patients.”
After her experience, she was inspired to start a support group in Greater Annapolis for those living with Stage 4 breast cancer that would grow into the larger nonprofit group it is today.
She said 30 percent of breast cancer patients see the disease metastasize, becoming fatal. Only 20 percent of Stage 4 patients survive to five years—the median is two to three years, Corneliussen, 60, said.
But the Air Force and government retiree is a bit of an anomaly.
She finished treatment in July 2005 (she still receives injections every four weeks.) And she's beyond her 20 percent shot at five years. And she doesn’t dwell on what could have been.
The bulk of her time is now spent as president of METAvivor. Corneliussen founded the nonprofit group with fellow Stage 4 breast cancer patients Avis Halberstadt, Karen Presswood and Rhonda Rhodes.
Presswood and Rhodes have passed in the past two years.
From its simple beginning as a support group with eight people, METAvivor has grown into a premier organization that has become internationally recognized for its advocacy for and education on Stage 4 breast cancer.
The group also is one of the only in the country that Corneliussen said she’s aware of that provides grant funding for research into Stage 4 breast cancer.
Last year—the first for its grant program—METAvivor provided a $55,000 grant and is preparing to announce the recipient of another $50,000 grant, along with another one for $25,000.
“Our hope is that we can provide two full grants next year,” she said.
She said some researchers have shown some success in making Stage 4 cancer cells dormant, allowing patients to manage the disease.
“But less than 1 percent of the $5 billion raised for cancer research goes to Stage 4,” Corneliussen said.
She said the bulk of the donations to METAvivor have come from donors across the country and even from other countries.
She’s addressed the New York state legislature, prompting talks of designating more funding for Stage 4 research. Corneliussen has traveled to Madrid to present information about METAvivor’s work to a breast cancer conference. She has a similar engagement in November in Lisbon, Portugal.
She also is the driving force behind various fundraisers throughout Greater Annapolis, such as a triathlon in Hillsmere featuring a kayak leg instead of the swim, a local home tour at Christmas, and an upcoming fashion show with David Alexander Spa.
“Trying to get the attention (for Stage 4) is very, very hard,” she said. “The focus for breast cancer is prevention, but prevention is only for people who have never had breast cancer in their lives.”
She said METAvivor is working to shift the culture of breast cancer research and the general conception that those with Stage 4, metastasized breast cancer are a lost cause.
“There is a paranoia about death,” she said. “If you take death away from it and you show that the disease is manageable, it wouldn’t be the scary disease it is today.”
CJ (Dian) Corneliussen-James
8:08 am on Wednesday, September 21, 2011
I would like to clarify that the 1% figure for metastatic breast cancer (MBC) research funding comes from 2007 reporting and was based on data collected in 2005. The amount of funding currently devoted to MBC research is estimated to be about 2%. CJ (Dian Corneliussen-James)
Julie Matthews
1:40 pm on Wednesday, September 21, 2011
Thanks for this article, John. CJ is doing wonderful things for the Stage IV breast cancer community and her hard work is greatly appreciated.
Bonnie
2:12 pm on Wednesday, September 21, 2011
I also have Metastatic Breast Cancer (Stage IV). No one wants to talk about it because Stage IV is FATAL!!! I know that. I have been told that several times, but you can't just prepare for death - some people do live!! My last PET scan showed my disease was not agressive; some tumors have actually disappeared. Hard to believe - and my husband and I hold our breath every month when we go for treatment, but right now we are one of the lucky ones. 30 months and counting,, I keep saying. It may take me; but not until I give it a real fight!!!
CJ (Dian) Corneliussen-James
2:25 pm on Wednesday, September 21, 2011
Bonnie, I agree entirely. Some people with MBC live a long time, indeed, it is believed that a very small percentage of people actually escape death from this disease. Sadly,others die less than one year from diagnosis. But regardless of where each one of us fits into that unknown plan, every day we have is a wonderful gift that we should enjoy to the fullest. And aside from taking a few hours or days to ensure our wills are in order and our end-of-life wishes are recorded, we should be doing the things we most want to do and making the best of every day to the extent that we can. My very best to you ... and may 30 months be just the beginning !
Gilbert
2:32 pm on Wednesday, September 21, 2011
What is the point of using the euphemism "passed" in an article about stage 4 cancer?
Nancy Fullam
3:20 pm on Wednesday, September 21, 2011
I hope she is engaged in the fight to address the shortage of chemotherapeutic drugs for stage IV patients. It is a travesty to find that newly diagnosed patients with Stage IV disease do not qualify to receive the back ordered medications - existing patients (understandably) have priority. A good friend just got this news and to be relegated to second tier therapy when facing this prognosis is just outrageous.
CJ (Dian) Corneliussen-James
4:34 pm on Wednesday, September 21, 2011
Nancy ... you are absolutely right that this is a critical issue that urgently needs resolution. We hope that the collective efforts of the MBC community can bring about change in the very near future. It is inexcusable that anyone with MBC should have to "wait their turn" for treatment.
Katherine OBrien
10:30 pm on Friday, September 23, 2011
CJ is a real hero of mine, so glad you featured her!
I saw CJ at last year's MBC conf in Indy. This year's is right in your backyard. CJ is one of the patients who will lead a breakout session. (SS Disability)
Johns Hopkins to Host National Metastatic Breast Cancer Conference Oct. 28-29
(NEW YORK CITY) (SEPT. 26, 2011) “Empowerment Through Education” is the theme of this year’s Metastatic Breast Cancer Network National Conference at Johns Hopkins Avon Foundation Breast Center (Baltimore). The free conference kicks off with a reception on Oct. 28 and concludes with a full-day session on Oct. 29.
The 2011 conference is hosted in conjunction with Lillie D. Shockney, RN, BS, MAS, and the Johns Hopkins Avon Foundation Breast Center. All MBCN events are free and open to family, friends and health care professionals.
“The Metastatic Breast Cancer Network was created to serve the distinct needs of people who have an incurable form of breast cancer,” said Michele Przypyszny, MBCN president. “This annual conference is an essential vehicle for spreading our message of education and awareness. It’s also an excellent opportunity to hear from some leading breast cancer researchers and medical professionals while networking with hundreds of people who ‘get it.’”
http://mbcn.org/special-events/category/agenda-and-speakers/
Marilyn Mann
8:17 pm on Saturday, September 24, 2011
This is great to know. I am a breast cancer survivor. I don't have metastatic disease, so far, but I am very glad to hear you are doing this work.
CJ (Dian) Corneliussen-James
7:46 am on Sunday, September 25, 2011
Thanks, Marilyn. I very much appreciate your comment. CJ
Tish
11:10 pm on Tuesday, September 27, 2011
I know there are over 24 types of breast cancer. Hoping that they all get researched. Breast Cancer spreads to brain, lung, bone, and liver. Metastatic Breast Cancer Patients need more answers. Support could start at medical centers. I am pleased, to be able to make donations to METAvivors and know it is going to Metastatic Breast Cancer Research.
Kathleen
11:35 am on Tuesday, November 8, 2011
I was diagnosed with Stage 4 breast cancer in July. It had gone to my bones. I'm taking shots once a month. My marker numbers are dropping. I haven't had a sick day. I'm full of hope. I had a mastectomy in 2001. These "Save the Hooters" things seem really shallow when so many are not worried about losing breasts, but losing their lives! Any of the survivors can quickly turn into Stage 4 before they know it. Donations definitely needs to go to Metastatic Breast Cancer Research!
CJ (Dian) Corneliussen-James
7:52 am on Sunday, November 13, 2011
Kathleen,
Metastatic breast cancer (MBC) is a difficult diagnosis to receive, but it is very good news that your markers are dropping. We agree with your point on slogans such as "Save the Hooters". Our slogan that appears on our new t-shirt says: "Take the Coconuts ... Save the Tree" . We hope this helps people understand that there is a critical difference between stage IV and earlier stage.
Please note that 100% of every research donation made to METAvivor goes directly into its MBC research grants as does 100% of all profit from our research fundraisers. If we truly wish to end death from this disease, then MBC must receive a proportionate share of breast cancer research funds. And since 30% of breast cancer patients metastasize, then 30% of breast cancer research funds should be going into MBC research. METAvivor is doing everything it can to make that happen. Wishing you all the best.
ESperanza
4:55 am on Thursday, January 26, 2012
Hi Kathleen,
my friend was diagnose with stage IV last year and has been taking tamoxifen since but it seems is not working. Could you please tell me the name of the shots you are taking? WE are trying to look for alternatives asap. Thank you
Esperanza
CJ (Dian) Corneliussen-James
8:43 am on Thursday, January 26, 2012
Esperanza, The shots are likely FASLODEX. I also take Faslodex injections. They are for hormone-positive patients. Tell your friend ask her doctor if this drug might be an appropriate next step.
Kathleen Hickman
2:21 am on Monday, December 3, 2012
I'm back early a year later. Still taking Faslodex injections. I'm never sick (knock on wood). How are you doing, Dian?