Sean's Personal Story
HERA Ovarian Cancer Climb for Life
Interview with Ovarian Cancer Survivor and Patient Advocate Sean Patrick
By Mu Yang
Sean Patrick was diagnosed with ovarian cancer in 1997. She had begun feeling unwell ever since the summer of 1995, but her doctors gave her repeated assurances that her concerns were unfounded. Her stomach, "which should've been concave or completely flat…had a kind of lower stomach pooch that was hard" and she was suffering from severe indigestion that was waking her at 2 or 3 o'clock in the morning. Sean took control of her health, badgering her doctors to perform two surgeries that led to their discovery of cancer. |
After her diagnosis, Sean took an even more pro-active stance towards treatment for her disease. While her doctor recommended that she do chemotherapy, from her own extensive research, Sean came to the conclusion that chemotherapy had very little chance of success against her type of ovarian cancer: low grade serous, stage IIIc. Sean made the decision to refuse chemo and fire her doctor. With a new doctor, she chose to enroll in a clinical trial. Sean now contributes to fighting ovarian cancer by raising awareness and funding through the creation of the HERA (Health, Empowerment, Research and Advocacy) Foundation and the Ovarian Cancer Climb for Life, a rock climbing event for ovarian cancer research.
Just back from summating the Grand Teton for Climb for Life, Sean sits down for an interview on her important decision to take a proactive stance towards her treatment and the ways in which she dealt with cancer, channeling her frustrations into positive action in the fight against her disease.
After doing research on treatments for ovarian cancer, you went against your doctor's suggestion for chemotherapy and enrolled in a clinical trial instead. Do you recommend clinical trials for other patients?
I really do, depending on their position. I joined a clinical trial because I had a rare tumor type that was first identified at Johns Hopkins in 1997 by Dr. Kurman, the head of gynecological pathology. There was not a whole lot known about it so treatment was not cut and dry, and it is still very controversial. From my research, I knew that the chances of chemotherapy working for me were pretty slim. Being in a place where there was no standard of care, my best option was a clinical trial out of the box, and it was a good decision for me to make.
I think if you have failed a couple of different treatments of chemo, looking into a clinical trial makes total sense. There is a bias among the general medical community because I don't think they know as much about clinical medical trials as well as or as much as the patient. They just don't recommend clinical trials. Most of the patients I know that have been through clinical trials are the ones that had brought the issues up with their doctors, not the other way around - that's much rarer.
I would also suggest that women look for a phase II or phase III trial. In a phase I trial, they are just trying to figure out toxicity. It won't go to phase II unless it has some positive results in phase I, and phase III is usually where it is approved by the FDA so it has to have that much more success for it to get into a phase III trial for efficacy.
If someone is diagnosed with invasive ovarian cancer for which there is a standard of care, however, then listening to your doctor is probably not a bad thing. What I can safely say is, I don't care what you are diagnosed with but if you yourself are not willing to do the research, then have a friend do it for you. You should know as much as you can about what you have, what the current standard of care and treatment is and what your options are if you fail that standard of care, ask your doctor about clinical trials.
During your treatment, you went through a couple of doctors and actually fired a few of them. How important do you find the comfort level between a doctor and patient to be during the treatment process?
I think it is incredibly important. I've had a lot of women who have contacted me almost in tears because of the relationship they have with their doctors. Especially when they are diagnosed with later stage ovarian cancer, the doctors are kind of "doom and gloom." You want somebody who is on your team and is going to be a cheerleader for you even when the odds are dismal. You don't have to put up with people who treat you poorly; they are enough good doctors out there with good attitudes that you don't need to put up with a good doctor with a bad attitude.
I was "Flight for Life" to Johns Hopkins three years ago for surgery and was told that I had 4-6 weeks to live based on what was found and everything. I had a surgeon who was willing to work with me and do the surgery and take the risk even though my chance of surviving the surgery was very slim. He was willing to stand by me in my decision to still not do chemo and respect what I wanted and that made all the difference in the world.
How do you deal with the emotional aspects of cancer?
I was raised to believe that there was opportunity in every situation, even if it is a really bad situation. So I guess the way I dealt with it was that I had to get angry enough and indignant enough. I channeled my anger into trying to make a positive difference.
I also dealt with it how I've dealt with everything in my life, as a challenge, and for me that means learning as much about it as possible so I would know more about my disease than a large number of doctors in this country. Other people have different ways of coping but that's what's worked for me all the way around.
And the other thing is, it is what it is, and I can't change that. I just need to make the best of the situation with what I have. It doesn't mean I don't have my moments, days when I'm really upset about it, but I don't think I ever asked why me. And now that the statistics are 1 in 3 people will develop some form of cancer during their lives, I think everybody should be asking why not me?
Speaking of making a positive difference, you founded the HERA Foundation and Climb for Life. Can you talk a little about HERA and how you came up with Climb for Life ?
I thought it was important to raise awareness and to put a different face on the disease. Ovarian cancer was a disease that I shouldn't have gotten and my friend shouldn't have gotten and I found out very quickly that there were girls as young as 13 and 14 with ovarian cancer as well as women in their 20s and 30s, that it was not just a disease of 70 year old white women with no children.
With HERA, we decided to focus our attention on three areas to stop the deaths of mothers, daughters, sisters, aunts, girlfriends, and wives from ovarian cancer. These three areas were to first off, empower women to take control of their health. Young, fit women and older women many times have their complaints dismissed by their doctors. If they feel something is wrong with their body then they should keep going until they get an answer. Especially, if they have the symptoms of ovarian cancer, they should ask that ovarian cancer be ruled out up front and not at the end, because now the average time of ovarian cancer diagnosis is 6 to 9 months and that's the difference between early stage and late stage cancer, or life and death. The other thing HERA does is to empower research scientists to look outside the box, and to that end we fund clinical fellows and post doctors with new ideas. Our last one is to empower communities to provide support, to provide grants to organizations that can give women help with things like travel, childcare, or hotel accommodations. I live in the rural west and women have to travel a long way to get to a gynecological oncologist which is the most important thing a woman can do if she suspects ovarian cancer.
After I was "Flight to Life" to Johns Hopkins 3 years ago while rock climbing a route at Yosemite, I had a long recuperation process because I had every complication known to man or woman. During that recuperation time, I talked to a lot of climbing friends and people I knew in the industry and the idea for the Climb for Life was born. I had no idea what I was starting…in 2002, our first year, we had 65 people participate. Last year, we had 142 and this year it looks like we'll have close to 200. Climb for Life has really grown, and we now have an event in Las Vegas. The big one is at Salt Lake and it will happen this year from September 16 to 19 and you don't have to be a climber or a girl to come!
Any other messages that you would like to share?
In terms of finding better early detection and treatment for ovarian cancer, we have come a long way in the last few years, but ovarian cancer is grossly under-funded. In the past 10 years, ovarian cancer survival rates have remained virtually unchanged, hovering at around 50%. According to new statistics this year from the American Cancer Society, deaths from ovarian cancer are also almost up 20%. So we still have a long way to go, and we desperately need people to recognize that this is an under-recognized threat to women's health and that we all need to be concerned about it and get women diagnosed earlier.
The big thing is that women really need to take control of their health. They really need to be aware of the symptoms of ovarian cancer, they need to know their family history - both their mother's side and their father's side - doctors don't often ask about the father's side, but that also has an impact. A lot of times we like to stick our heads in the sand and not think about it, but the chance of us knowing somebody or ourselves being diagnosed with some form of cancer in our lifetime is pretty high and getting diagnosed early is still the best way of surviving the disease. I would urge people to be aware of the risks, to find the ways in which they can reduce these risks, and if for some reason, they are diagnosed with ovarian cancer or any other form of cancer, to understand as much about it as possible so they can get the best care possible.
To learn more about the HERA Foundation and/or register for the Ovarian Cancer Climb for Life, held this year from September 16-19 in Salt Lake City, Utah; visit the Climb for Life website.
To learn more about Sean read her personal story.