Patient perspectives: Dian “CJ” Corneliussen-James
Rebecca Aris interviews Dian Corneliussen-James, better known as CJ, on her experience as a metastatic cancer patient and how she felt the level of support she received declined when her cancer advanced.
Dian Corneliussen-James, known as CJ, is a metastatic breast cancer patient. Very few people realise that 30% of breast cancer patients in the US, and 40% in the UK, are actually metastasizing. Facts such as these are rarely broadcast and result, CJ believes, in an inadequate level of support for the metastatic breast cancer patients out there.
CJ feels that whilst there is plenty of support for the newly diagnosed, early stage breast cancer patient there is little to support the metastatic breast cancer patient, despite a recent report stating that the incidence of metastatic breast cancer has been steadily increased in women aged of 25 to 39 for the past 30 years without a corresponding increase in older women, demonstrating that this is not just a disease of old age. In addition, the recent global Count Us, Know Us, Join Us survey revealed that nearly three-quarters of advanced breast cancer patients (73%) often feel like no one understands what they are going through, signifying that this is an area where there is a real lack of support.
Driven by outrage at the disparity of how resources are distributed between early and late stage breast cancer patients, CJ strives to gain more support and research funding for her patient community and shares her story here.
RA: CJ thank you for agreeing to take part. Could you please start by describing your journey as a patient?
CJ: My journey was in a sense perhaps traditional for the metastatic patient. I was diagnosed in 2004 with primary breast cancer, and at that point I say that I ‘entered the world of pink’. The breast cancer world is very well organised, and has a lot of support out there. Even while I was awaiting my surgery I received a visit in my pre-surgery cubicle from a volunteer who came to answer my questions and she said she was a survivor herself, and I was going to be just fine, and she handed me a big bag of gifts and told me about all the programmes available when I got out. I could also have a mentor for my entire year of treatment whom I could turn to at any time. It was very well organised and orchestrated, and I thought this is really incredible.
It was a huge turning point when I metastasised to my lung, and I decided to have the entire lobe of my lung removed. I was back in the same hospital for that surgery, and as I laid there knowing that now I had a fatal disease and being very frightened and wondering how much longer I would live, there was nobody that came. There was no volunteer, I would soon find out there were no programmes, there was no mentor, there were no gifts.
When I went home and looked on the internet, back in 2006, there was very little information to be found. That has somewhat improved now. But at the time I thought I had just fallen off the pink pedestal and landed in the leper colony.
I felt absolutely deserted by the pink world. That was my first eye opener, and that impression did not change.
I tried going to breast cancer conferences, but there would be no speakers on metastatic breast cancer, no hand-outs, no mention at all.
So I realised at that point that the metastatic community has almost no support.
“So I realised at that point that the metastatic community has almost no support.”
RA: Was it that experience that inspired you to set up METAvivor Research and Support Inc?
CJ: Yes. My first concept was everybody deserves support. And so I started a support programme in 2007.
In January of 2007 I heard a television special where it was said that less than one half of 1% of our federal cancer research budget went to any stage four cancers, and that was a huge shock.
The statistic was attributed to an advocate, Clifton Leaf, who had written a Fortune Magazine cover story on it. I tracked him down, and he confirmed that it was very grim out there. He put me in contact with a metastasis researcher Danny Welch who was at the time president of the Metastasis Research Society.
Meeting those two and learning as much as I did from them made me decide that something has to be done about research, and the only way to do that was to form a non-profit.
RA: What feelings do patients experience as they go through this journey?
CJ: Patients go through a wide variety of emotions. When they are first diagnosed it’s absolute shock and devastation. They ask themselves what did I do wrong?
It’s hard to know initially where to go for information, you just feel very alone and very confused.
Most oncologists try to instil you with hope, and if you haven’t read the statistics which say that on average the metastatic breast cancer patient lives only 18 to 24 months after diagnosis, your doctor starts making you feel fairly hopeful. Then you hear people calling it a chronic disease and you’re thinking diabetes is chronic, and people live with that for 20, 30 and 40 years.
So you start getting hopeful and you think I can beat this. But you also have the ongoing anxiety that it’s going to spread again, and every time you have a blood test or you go for a scan, you wonder what’s going to be found the next time.
And the reality is that for most patients it well progress. You may go into remission for a while, and then it’s back again.
Thus you go through a real emotional rollercoaster from the times when you’re hopeful because you’re doing better, to the times when you’re devastated because now it’s returned and spread again.
“…less than one half of 1% of our federal cancer research budget went to any stage four cancers…”
RA: How do the needs of the patients change from earlier stage breast cancer to advanced stage?
CJ: The needs are very different. The primary breast cancer patient is worried about losing a breast, they don’t want to be on drugs, or they may need some help around the home for a year. But there’s plenty of help for them out there, and there’s plenty of organisations they can turn to. That’s not to say that they don’t worry it will come back, but their life in essence, can resume to normal.
For the metastatic patient where they’ve got disease in vital organs the drugs impact their entire lives, the location of the cancer impacts their health, and this is a forever situation. They don’t worry about taking drugs, they’re worried that there won’t be drugs to take, that they will use up the drugs that work for them and then there will be nothing left.
When that happens it’s very frightening because it’s normally a sign that the end is coming rapidly.
Metastatic breast cancer patients are not worried about losing one year of their life, they’re worried about losing their entire life.
These are the needs that in essence aren’t met by the breast cancer community.
The doctors are so busy trying to figure out which drugs to give them next. They really have to individualise treatment, and they’re pretty overwhelmed with that. They’re not in the business of also looking after the other non-medical needs of the patients, and in reality I don’t think they should have to.
I think somebody else should be assigned that task, a social worker perhaps at the hospital who deals with them, but you just don’t see this very often.
RA: What specifically would you like to see being done to address these needs?
CJ: As there are at least 30% of patients metastasizing in the western world, I think that 30% of breast cancer programmes should be devoted to the metastatic patients – the support programmes, financial programmes, and especially the research that’s being done because our lives will only be extended and potentially rescued if research for already metastasized cancer is greatly increased. In today’s world with finances the way they are you’re not going to be able to add 30%, you’re going to have to redistribute the funds and the support that’s out there, and that’s what people don’t like to do.
These patients who have by far the worst situation are the ones with the least support and the least research for their disease. I really think we need to look at commensurate support and research funding.
You can still have positive rallies while you recognise these patients. Unfortunately, breast cancer communities don’t want to draw attention to the metastatic community. And that makes them feel isolated. I really think there’s a lot more they could do.
“They don’t worry about taking drugs, they’re worried they’ll run out of drugs that work for them …”
RA: Why do you think you’re so passionate about championing the differences between stage four advanced breast cancer and other forms of the disease?
CJ: It’s the injustice of the situation – that so much is given to those who need it so much less, and virtually nothing to those who need it so much more.
Some people seem so frightened by even the concept of metastatic disease. They don’t want to hear about it, discuss it, or reminded of it.
Some wellness communities for cancer patients have been known to turn their back on metastatic patients. They wanted their patients to focus on wellness and recovery, and always be thinking about fighting the battle and winning. They didn’t want patients to be reminded of or in contact with people who they classified as being “unsuccessful” in their battle. They say this as though those who do not metastasize are somehow superior and fight harder when in truth those who metastasize face by far the greater challenges and fight for a much longer time with enormous courage and determination despite severe and often debilitating side effects and they do this with almost no support. Yet far too often it is implied that the patient metastasized because she didn’t try hard enough
It’s things like that, that continually hit you in the face when you’ve got this disease.
People don’t understand our disease. They will ask “when is your treatment going to end?” Well our treatment ends when we die. They ask “didn’t you get your mammograms?” Most of us did. It happened anyway. It’s a lack of understanding and insensitive comments that leave the metastatic patient feeling side-lined. But it has also rallied people to action and our community is far more vocal than it was just a few short years ago. Also, new resources such as Novartis’s Count Us, Know Us, Join Us program are becoming more prevalent and are providing support, acknowledgement and information to patients where little existed only a few years ago. Indeed, the recent Count Us, Know Us, Join Us international patient survey showed that 40% of metastatic breast cancer patients felt estranged from the breast cancer community. This is a much lower percentage than a survey only five years ago would have likely revealed.
“These patients who have by far the worst situation are the ones with the least support…”
RA: What do you think the pharma industry can do to better meet the needs of the patient with late stage breast cancer?
CJ: Well they can certainly focus intensely on drugs to actually treat the metastatic patient. So much of what is called metastasis research these days actually looks at what caused metastasis and how it can be stopped from occurring in the first place.
While that type of research certainly has its place, it is not the type of research optimized to help the patient who is already metastatic. Many drugs are tested on metastatic patients because they’re the ones who will readily volunteer in the hope one of the drugs will prolong their life. But drugs and research focused on preventing metastasis are not going to render our disease a chronic condition rather like insulin has rendered diabetes a chronic condition as opposed to a deadly one. That’s what we want.
We want one third of the research out there focused on the patient who is already metastatic, and focused on making possible the development of the drugs that are specific to the already metastasised patient.
RA: CJ thank you very much for your time.
CJ: You’re so welcome.
About the interviewee:
After receiving degrees in German Literature and International Management, Dian Corneliussen-James or “CJ” as she prefers to be called, was a post graduate student in Intercultural Communications and German literary translation when she joined the Air Force as an Intelligence Officer 1979. Over the next 24-years her positions included amongst others, analyzing Soviet satellite activity, collecting intelligence in and against the East Bloc, serving as intelligence lead on the Joint Chiefs of Staff for the Somalia Conflict and helping resolve cases of Americans lost during the Vietnam and First Gulf Wars. Retiring as a Lieutenant Colonel in 2003, CJ started a second career as a senior intelligence analyst in the offices of the Secretary of Defense, but a rapid succession of diagnoses over a period of 20 months, including stage II breast cancer, systemic lupus and stage IV breast cancer, led to her permanent retirement in 2007.
Suddenly thrust into a whole new world, CJ’s eyes were quickly opened to the fact that virtually none of the support, research or activity that typifies the very successful breast cancer movement extended to the metastatic world. She began making contacts, asking questions and collecting information. Soon she was looking for ways to increase funding for metastatic breast cancer research and in 2007 CJ established a regional support program for persons with metastatic breast cancer. In 2009 four of the then 30-odd members co-founded METAvivor – an all-volunteer non-profit organization that fills an enormous gap in awareness, research and support for metastatic breast cancer. It was very important to CJ and the other co-founders to set the unusual policy of putting 100% of all donations into research. That policy remains in effect and by the end of 2013, METAvivor will have awarded more than one-half million dollars in metastatic breast cancer research grants. The non-profit remains an all-volunteer organization led by metastatic breast cancer patients.
Earlier this year (2013) CJ stepped down from her role as President of METAvivor and became the organization’s first Director of Advocacy. In that position she has expanded METAvivor’s operations nationwide through a network of volunteers dedicated to the METAvivor mission.
How can we better support the metastatic breast cancer patient?