'Desperate Housewives' Kathryn Joosten talks Lung Cancer, and how to fight back
By April MacIntyre Jan 27, 2012, 1:26 GMT
Ms. Joosten will be featured in an upcoming story arc on the long-running series, beginning February 19.
The end is near for both ABC's "Desperate Housewives" and the gossipy neighbor, Mrs. McClusky, played by Emmy award winning actress, Kathryn Joosten.
Ms. Joosten will be featured in an upcoming story arc on the long-running series, beginning February 19.
Years ago, her fans were outraged when her character Mrs. Landingham was killed off on another great TV series, "The West Wing," and now Ms. Joosten's "Housewives" character will be on the edge once again.
At one point during the "Housewives" run, showrunner Marc Cherry vowed never to kill off Mrs. McCluskey (Joosten), but current executive producer Bob Daily recently told TV Guide he's "not 100 percent sure we're killing her off, but her cancer is returning. And it's serious."
Ms. Joosten is not only a two-time Emmy Award-winner, but also a two-time lung cancer survivor.
Joosten’s approach to the task was straight forward. She told Marc Cherry, “Get it right!” she goes on to say, "I have no fear of delving into this storyline. This is a terrific idea to get the word out there and bring lung cancer awareness into the spotlight. At the end of the day, I know I am a two-time survivor, whether or not Mrs. McCluskey is."
Stepping into the spotlight, Kathryn Joosten hopes her character on TV, as well as her own battle against lung cancer, will help decrease the stigma of this disease and educate the public.
Ms. Joosten is the national spokesperson for the Lung Cancer Profiles campaign. Lung Cancer Profiles is a collaboration between Pfizer and the nation’s leading lung cancer patient advocacy organizations: The Bonnie J. Addario Lung Cancer Foundation, Lung Cancer Alliance, LUNGevity, Lung Cancer Foundation of America, National Lung Cancer Partnership, Uniting Against Lung Cancer. www.lungcancerprofiles.com
In a recent op-ed for the LATimes.com, Ms. Joosten writes that the "dearth of information" on her cancer is disheartening compared with the most visible fundraiser, breast cancer. This is despite the fact lung cancer is far more lethal, and is a bigger killer to women than all the other cancers combined.
Ms. Joosten writes, "We lung cancer survivors — and yes, there are a growing number of us — get irritated and disappointed when we see the oceans of pink on everything from football players to garden gloves. Some of us are plain irritated that lung cancer groups apparently can't get it together and organize the way that the breast cancer lobby has."
She adds, "The big loser in the cancer-funding race is lung cancer. It is the biggest cancer killer in the country, yet compared with other major cancers it receives the least National Cancer Institute funding on a per-death basis, as reported in 2008 in the New York Times..."
Monsters and Critics had a chance to speak with Kathryn Joosten about managing this disease.
Monsters and Critics: Ms. Joosten, how did you become a spokesperson for the Lung Cancer Profiles campaign?
Kathryn Joosten: A celebrity sports agent called my agent. I've been very open about my lung cancer and it's not easy finding a celebrity who will be open about it.
I was delighted and excited to take on that role as I've been frustrated that I cannot create the kind of program that will be necessary to get the public's attention.
M&C: Your biography identifies your lung cancer as Biomarker: KRAS-positive NSCLC. For those unaware of biomarkers and categorizing lung cancers, can you give a bit of a thumbnail on what these things mean?
Kathryn Joosten: Each cancer tumor, lung, Breast, prostrate in composed of cells that are mutations of the healthy cells they should be. It has been discovered recently that there are certain mutations of the lung cancer cells that respond better to specific drugs, or don't respond at all. Therefore the cancer tumor is analyzed to see what kind of mutation is present. In my case it is identified as a KRAS Positive Non Small Cell Lung Cancer. In theory, this mutation will respond better to a specific targeted drug therapy than other.
M&C: What was that day like when you learned of your diagnosis with non-small cell lung cancer (NSCLC) 10 years ago - and then when it returned?
Kathryn Joosten: 10 years ago I was in total denial. I looked at the spot on the xray with the physician, and recognized because of my nursing background that the tumor as small, has solid edges and correctly assumed it could be removed surgically, which is what happened.
I never thought I would have an second cancer. In 2009 I was diagnosed with a second cancer, not a return of the first. It was on the other side and totally different.
This one had invaded tissue around it. It was also surgically removed but had spread to surrounding tissue and I had chemotherapy right after surgery and then was clear for 13 months before it showed up again.
I was devastated by the news of the metastasis. It has taken quite awhile to learn to deal with this realistically. I am living with cancer, not dying of it. There is a difference and for many lung cancer becomes a chronic illness.
M&C: Explain to those who are unaware what it means when you say "I’ve learned how important it is to be an advocate for your own health and find an oncologist who is right for you." Exactly what does that mean? How does one find the best oncologist for their cancer?
Kathryn Joosten: I mean that it is vitally important that a patient completely understand the nature of his cancer, what is it, what the mutation is, what the current state of therapies are. the patient must be an equal partner with the Oncologist, not just the receiver of meds and a pat on the back.
Oncologist, on the whole tend not to treat the entire person but to see that patient as a Lung Cancer. I've heard multiple stories of Lung Cancer Oncologists completely ignoring the emotional aspect of this disease.
I even had one who would not prescribe an antidepressant for me because she didn't 'feel comfortable' prescribing for depression, a standard part of Lung Cancer. You have to find an Oncologist who will share his information and who will listen to the patient and who will view the patient as a total patient, not just a set of lung symptoms. I've been through four before I found the right team. Do not worry about any doctor's feelings.
I've heard many patients complain that their Oncologist is always in a hurry and they feel they can't ask questions. If you don't feel that you are partners, say so and ask around to find another. Keep copies of your tests and your total treatments, including disks of your CT scans. Insist on having copies of your medical file. If they refuse, find someone else.
M&C: Where can people go to get these molecular tests and learn, as you did, how best to tackle a cancer like this?
Kathryn Joosten: If the patient had a surgical removal of a tumor, the hospital already has a sample. The patient should request that the tumor be analyzed for bio markers.
This is a relatively new area and some of the smaller places don't have the facilities. This is where the patient has to become active in his own care. Additionally, insurance may or may not cover having the tumor tested.
One has to be vigorous about challenging insurance companies to include this. Patients should learn about clinical trials and do some studying about their condition. Joining a support group and going online to sites that have this information is also necessary
M&C: Lung cancer requires excision of the tumor or spot, then undergoing chemotherapy and radiation. What should people know about the effects of both of the follow up treatments- what were some of the physical tolls you may have not expected?
Kathryn Joosten: Some Lung Cancers cannot be surgically excised at all. Again, knowledge, knowledge, knowledge is necessary! Don't be afraid to ask questions of everyone.
I encourage patients to have questions written on a piece of paper and tell the doctor or nurse that you're not leaving the room until all are answered. You need to know that depression and fatigue are part of the side effects along with nausea, diarrhea and more.
You need to learn to pace yourself and you need to learn that activities you do yourself - such as self-visualization - are as important as the drugs.
M&C: You speak highly of Dr. David Gandara at the University of California Davis Cancer Center, how do average people get to these high level cancer researchers? Is there a process?
Kathryn Joosten: Research about the disease and who is doing what is so important. I found Dr. G through the Bonnie Addario Foundation which I found on line and established a relationship with. All Universities that have medical facilities attached have researchers in specific fields. Before Dr. G I was in a clinical trial at National Cancer Institute in Bethesda which I was referred to by a clinician connected to National Lung Cancer Partnership which I found on line.
M&C: Biggest misconception about Lung cancer is that the person must have been a smoker. What do you want to share about this cancer type?
Kathryn Joosten: This is the stigma that keeps Lung Cancer from being accepted as something that happens TO people ie: innocent as Breast Cancer is perceived.
While smoking has played a large role in lung cancers before, it has become less and less of a causative factor.
But the stigma of "you did it to yourself" continues to influence how the public see this illness. Although Lung Cancer kills more that all the others put together, it still has the lowest funding and the lowest attention paid to it as a public health issue.
More and more of the new lung cancers being seen are in women 40 to 60 who never smoked or quit years ago. Unfortunately the National Cancer Institute's major contribution to advocacy for lung cancer has been smoking cessation programs, not research and it continues the stigma that separates the patient from society as someone with a self-inflicted illness.
Kathryn Joosten is currently very active as the national spokesperson for Lung Cancer Profiles campaign. Lung Cancer Profiles is a collaboration between Pfizer and the nation’s leading lung cancer patient advocacy organizations: The Bonnie J. Addario Lung Cancer Foundation, Lung Cancer Alliance, LUNGevity, Lung Cancer Foundation of America, National Lung Cancer Partnership, Uniting Against Lung Cancer. www.lungcancerprofiles.com