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Sandy Spotlight on Katherine Aird, PhD

December 26th, 2019

(photo credit: Jason Plotkin)

Research is a key component of learning more about what causes ovarian cancer. The Sandy Rollman Foundation chatted with Hershey, PA ovarian cancer researcher Katherine Aird about what goes on in the lab and what makes her job so rewarding and inspiring.

SROCF: Can you tell us a little bit about yourself? Where did you attend grad school and undergrad?

Katherine: I am currently an assistant professor at the Penn State College of Medicine out in Hershey, and I just celebrated my lab’s three year anniversary- it’s been fun. I went to Duke in Durham, North Carolina for grad school and Johns Hopkins for undergrad.

SROCF: How did you get into this field, and why is cancer research such an important field of study.

Katherine: I didn’t actually plan it that way. When I went to graduate school, I had a different idea in my head about the thing that I thought I wanted to research but ended up rotating in a cancer biology lab. I was pretty much hooked at that point. It touches all of our lives, and I think that is somewhat important to me. I always tell people that doing what we do as scientists is like being a detective. You’re always trying to figure things out and putting all kinds of pieces together. I think for a lot of reasons understanding cancer has been challenging, and I like that challenge.

SROCF: So what lead you to move more into ovarian cancer research?

Katherine: I find it very rewarding from a research perspective. Almost everything we’re doing no one has ever looked at before which is really neat as a scientist. It’s kind of cool that to think, “Oh my gosh wow no one has ever gotten these results before or looked at ovarian cancer in this way.” I also think that while I’ve luckily not been affected personally by ovarian cancer itself the community needs more people in it. It’s just a great community of researchers. I really enjoy that part of it giving back and seeing where we can go both from the research perspective and the outreach perspective.

SROCF: Can you share a little bit of insight on your relationship with Robin and the Sandy Rollman Ovarian Cancer Foundation? How did that establish?

Katherine: We have a very small, but active, group here in ovarian cancer research and we also collaborate with oncologists. It’s really great to have people from so many different backgrounds. For over three years now we felt like there was a critical mass that we wanted to start a research center. Of course it’s going to be very small because there’s not a lot of us, but we are small and mighty, and we are ambitious driven women.
We had this idea and one of the people I talked to was in our foundation’s relations office and she had spoken to Robin at some point. She then suggested I invite her out to explain our research and everything we’ve been doing. Considering I’d only been in the area a little while, I didn’t know much about the Sandy Rollman Foundation. So, Robin came out to our lab, and we spent the majority of the day together. She told the story of Sandy passing, and I was in tears. We looked at each other and just knew there was something we could build together. Sometimes you just have this instinct that someone is on your level with understanding an unspoken thing.

SROCF: That’s really moving and inspiring. How did that make you feel? What was your reaction?

Katherine: Well, it’s just such an inspiring story to think that you spend your whole life as a nurse and then create an entire foundation based off one moment. It’s just incredible to me on so many levels and so inspiring.

SROCF: What were the next steps in creating a stronger partnership with the lab and the foundation?

Katherine: So, that day I got to hear a lot more about Robin, and also about the foundation, and we really hit it off. We told her a lot about what we were trying to do, and then she and the Sandy Rollman foundation are both very active on Twitter and so am I, so that’s how we’ve kept in touch. She was able to see how our lab tackles these problems, and I can see what they’re doing in terms of advocacy.

Once, I saw on Twitter that they were traveling to DC to lobby for ovarian cancer research, and I wanted to be there. I told her to let me know the next time they go, because I would have loved to participate. I just find that things like this are so inspiring, and there’s no other foundation that touched me the way this did.

SROCF: Can you tell us how grants help further your research, and why is it so important to the ovarian cancer community?

Katherine: Unfortunately, this is the world we live in and that is we live off grant funding to do basic science research at academic institutions and every little piece helps tremendously. It could be helping me keep a graduate student funded for a year or a postdoc or something like that. In terms of the research, we’re trying to understand these new drugs that have been approved. The first new approved drugs for ovarian cancer in the last couple of years are these inhibitors of the enzyme, PARP, and it’s really exciting. The whole field is overwhelmed because basically we didn’t have a new drug for so long. Unfortunately, there are still lots of problems. A lot of women either don’t respond or they’ll become resistant and we need to understand that.

We’re taking a different approach than other labs, and we’re trying to understand how the cancer cells use nutrients like glucose on a cellular level in response to these drugs. There are some FDA approved drugs for other cancer types that we are using now in combination with PARP inhibitors to try to see whether we could make the cells die. That’s the main idea of the grant. So far, things are heading in the right direction.

SROCF: Can you describe a day in the life of what you do on a daily basis and just talk about what your discoveries and findings are?

Katherine: Some of the work we are doing as part of the grant from the Sandy Rollman Foundation is to try to understand the early events in tumorigenesis. A lot of the work has been done on very late stage patients because they’re often diagnosed very late and of course that’s very important for multiple reasons. Our lab has been interested in what’s happening really early on. I have this grand plan, although no clear evidence to support the fact that I can do this in my career, that maybe we could come up with preventative measures if we understand what happens really early in the disease.
We’re looking at how the cells are using metabolism or using nutrients to affect all of their different cancer properties. We hope that some of those things may allow us to better understand how the cancer forms in the first place, and then it’s possible then we could come up with new targets based on that. That’s maybe 50 years down the road, but it’s a goal of mine and the lab that I’m going to keep working for.

Sandy Spotlight on Vivian Seiler

November 18th, 2019

The Sandy Rollman Ovarian Cancer Foundation recently chatted with survivor Vivian Seiler to learn about her experience with the disease and how she used the foundation’s programs to keep her going through the tough times.

Because the holidays are all about giving back, we wanted this month’s spotlight to highlight how Sandy Rollman gives back to survivors and families alike. Read our November “Survivor Spotlight” below to learn how Vivian fought through her diagnosis with the help of other survivors, mentors and more.

SROCF: Can you tell us a little bit about yourself?

Vivian: I grew up in central Pennsylvania and my husband and I started to raise our family there. We moved to Phoenixville about 19 years ago, for my husband’s job, and then I also got a job in the area. Our kids were active in sports, and I was always running them around, in addition to working full-time. I was also fairly physically fit and active.

SROCF: Can you tell us when you were first diagnosed with ovarian cancer? Did you have any symptoms that lead you to get checked out?

Vivian: I was diagnosed in April of 2016, and the diagnosis came quickly. I know some women struggle for years to get a diagnosis. In February of 2016, I felt abnormally tired. I had an extreme amount of stress at work at the time, as well as in my personal life, so I just thought my tiredness was due to the stress. In mid-March, I had lower back pain and had one really heavy period that I had to go to a gynecologist where he performed a D & C. He sent me home, and told me I was anemic and that was causing my exhaustion.
I waited another week, I was not getting any better, and now I noticed my abdomen was starting to distend. I went to a different gynecologist, and he did a transvaginal ultrasound on me and said it looked like I had an ovarian cyst that burst. He said I had fluid in my abdomen but that my body would absorb it over time.
Over the next week, I was having trouble eating as my abdomen was distending even more. So I waited just one more week and I said to my husband, we’re going to the ER because I felt like I couldn’t get anyone to listen to me and really check to see what was wrong. Once I got to the ER, they ran blood tests, did another transvaginal ultrasound and then a CT scan and that confirmed it. I think people overlooked me because I was a healthy 52-year-old, and I had no cancer in my family at all, of any kind. So it was out of the blue.

SROCF: What were the next steps after your diagnosis? Did you have surgery right away?

Vivian: When I was in the ER, the ER doctor came to us and said, he was getting a gynecologist oncologist to come see me. I remember thinking oncologist? That’s cancer, they can’t know what they’re talking about. So when the gyn/onc came to see us, he told us they suspected ovarian cancer, but they wouldn’t completely confirm that until they operated. I kind of blanked out when he said it, I’ll be honest, because he was saying terms I’d never heard such as ascites and CA125. I felt like I was having an out of body experience.
They wanted to send me home for a day and then have me come back in two days for surgery. I persisted because I literally couldn’t eat at that point, and it felt like I was getting weaker by the minute. They found a bed, and I convinced them to admit me that night so at least I could get IV fluids.
I had the debulking surgery a day later where he did a full hysterectomy, removed my omentum and also removed as much cancer from my small bowel as he could. At that point, I was diagnosed with stage 3C clear-cell ovarian cancer. It’s a more rare type of ovarian cancer, and it’s pretty aggressive.

SROCF: Were they able to predict how long you had it? Like you said, you had just started to experience the symptoms a few months before you had surgery, but at that point it was already stage three.

Vivian: Right, exactly. I do know clear-cell is very aggressive, and I think it is fairly fast growing. I’ll be honest, sometimes that question pops into my head, and I keep thinking I should have asked the doctor, but I never did. Some women have symptoms for almost a year, and I really didn’t. I was tired in February, but that was my only symptom. March is really when I started to not feel well. I pushed the doctors hard, and within three weeks I had a diagnosis.

SROCF: So, as of right now, how are you doing?

Vivian: Right now, I am in a state of what they call NED; no evidence of disease. My scans show no evidence of disease, and I’ve been in that state for about two years. I was getting scanned every three months, but I am now having allergic reactions to the dye they inject into me for the scans. I’m trying to have my scans farther apart, but it makes me nervous to not be scanned as often knowing it can come back so fast. The mental side of cancer is as hard as the physical side. It’s like a dark cloud following you around every single day.

SROCF: Can you share your experience with the Sandy Rollman Survive and Thrive group?

Vivian: When I was first diagnosed, I really didn’t know anyone with ovarian cancer, and honestly, I really had never heard of it. At the time, I thought the pap smear would detect ovarian cancer, which it doesn’t. So when I was diagnosed, my husband and I didn’t know any group to even reach out to.
Through a friend I found out about the Sandy Rollman Ovarian Cancer Foundation. I looked at their website a little bit, and I heard they do great things, but I didn’t really dig into it too much. Then Sandy Rollman started their first Survive and Thrive group. I was in the very first group that was started, and it gave me a sense of belonging.

SROCF: How did Survive and Thrive help you through your treatment process? What did you gain from the meetings?

Vivian: I think there were probably eight to ten of us that would come to the meetings, and it was like we all understood each other even though we were all at different points of our treatment. You didn’t have to worry about how you looked, because a lot of us didn’t have hair. You didn’t have to worry about what you were experiencing because one of us probably experienced it. We all understood each other.
It was just a really neat sisterhood, and I think it just gave us all a sense of belonging. There was no judgment, and it was a place to ask any questions. There was no question that you would feel weird asking because we all had been there. So it’s just a great group, and I still continue my meetings two years later. I keep attending the group because I just find it so helpful and uplifting. I no longer feel alone and know in an instant, I can text one of the ladies if I have a question or just need to be picked up!

SROCF: How long did you participate in the Survive and Thrive group meetings? Was there a certain time frame or a set schedule?

Vivian: The first group was a six month program and we would have one meeting a month. We still try to meet monthly. We get an email from Sandy Rollman in advance with the meeting topics. The topics can range from alternative therapies, such as acupuncture, massage, meditation, laughter yoga to doctors coming in to discuss the latest treatments.

SROCF: Looking back at your experience with Survive and Thrive, do you think it helped you through your diagnosis and gave you something you wouldn’t have found on your own?

Vivian: Yes absolutely! Survive and Thrive definitely helped me! It’s so uplifting to be around fellow OC survivors. Ovarian cancer is a very lonely disease because there’s not a lot of people that understand it. The other sad news is that the survival rate isn’t very good due to the diagnosis usually being in the later stages. So, it’s wonderful to be around other survivors and to support each other. It really helps with the mental side of this disease and staying positive.

SROCF: After your diagnoses with ovarian cancer and going through all those ups and downs with your own family and coping through it, how has that changed you as a person? Do you have a different outlook on life? Can you talk to me about how you feel today?

Vivian: I’ll never be the same physically or mentally. That, in itself, has been hard for me to accept sometimes. On a positive note, on the mental side of how I handle life, I feel like I’m in a much better place. I am much more aware of every minute of every day. Whereas before, I was always busy and just flew through the day with work and running the kids and let stress get to me. Now, I appreciate every minute of every day and try to not let things get to me. I’m also very grateful for doctors, researchers, nurses and Robin, the co-founder of Sandy Rollman.
So my gratefulness has gone up, and I try to be there with my loved ones more than ever. I think at times I used to say no to fun things because I had work or I had X, and now I’m like, yep, I’ll be there. The physical side for me has been harder to accept. It’s hard for me not to be able to push my body like I used to be able to. I no longer take anything for granted.

SROCF: What advice would you give to women who are recently diagnosed with ovarian cancer and don’t necessarily know where to turn to ask these questions or where to get help?

Vivian: Actually, Robin will sometimes send me names of women if they’re newly diagnosed, especially if they’re clear-cell. So, I mentor newly diagnosed women. I’m also involved in the Survivors Teaching Students program, and we go to local hospitals and share our stories with medical students. That’s been very rewarding for me as well.
With newly diagnosed women, they’re usually either just starting chemo or in the throes of it, and one of the things I learned the most through my treatment is to stay positive. I always tell them, ask me any questions and don’t be embarrassed about anything. Just stay as strong as you can and ask women questions who have gone through it.
The best advice I can give to women is to have a positive mindset, be your own advocate (question the doctors, they are on your team), be active and ignore the statistics.

Sandy Spotlight on Trish McKibbin

October 16th, 2019

Entertainer, hard worker and ovarian cancer survivor. These are just three things that describe Trish McKibbin. The Sandy Rollman Ovarian Cancer Foundation recently sat down with Trish to discuss how she beat ovarian cancer and how she continues to actively participate in raising awareness and funds to support the foundation and continued research to fight this deadly disease.
Follow along below as we continue our monthly “Survivor Spotlight” this October to learn how Trish made the best of her diagnosis and is now cancer-free and happier than ever.

SROCF: Can you tell us a little bit about yourself, where you’re from and what you do?

Trish: I live in Florida currently, but I’m originally from the Northeast. I’ve actually lived down here longer now, but Rhode Island is always home. I work an office job during the day, and I have a music entertainment business. I DJ, I sing, and do karaoke shows and help to plan events.

SROCF: How long have you been doing that? Is the entertainment business kind of a side hustle?

Trish: Well, it started off as that, but I stay pretty busy with it. Last year, I did around 220-something events. I like to say I have two-full time jobs.

SROCF: Let’s go deeper into your journey with ovarian cancer. Can you talk to us about what kind of ovarian cancer you were diagnosed with and when that all started?

Trish: In June of 2015, I was having what I didn’t realize were ovarian cancer symptoms. I had bloating and abdominal issues and a lot of the things that now I know are symptoms. I had gone to a general practitioner, and I told her my issues. I even told her my stomach sometimes feels hard, but I’ve put on weight. I thought I was supposed to be fluffy and soft. She just told me, in her exact words, “just lose weight.” At that point I think I was 46 or 47, and I’m like, okay, well, I’m getting older, so I guess I just need to lose weight.

SROCF: That’s tough to hear. What were the next steps you took after getting that diagnosis?

Trish: I started going to the gym more, working out, and time went on. This was like the beginning to mid of 2015. Then, in 2016, it was June, and I was going for my yearly gyno appointment and I was still having problems. For example, if I would lay down, either on the floor or on the bench at the gym, it was painful in my abdominal area. It was a couple of days before I was going to my appointment. I rolled over getting out of bed and I was thinking, wow, that feels like I have a softball or something in there. So, I told my gyno, who’s an amazing woman, about it and she did her exam. She was like, “Yeah, I think there’s something there. Could be fibroids, could be a cyst. I’d like to send you for an ultrasound.” So they did that, and I had my ultrasound, and then I had gone to get my mammogram. They brought me back for more ultrasounds after, and that’s when I started to get a little panicky. All she said was that I’d get the report in a few days.
My doctor ended up calling me because she got the report first and told me that I had a massive cyst on one ovary. She gave me the measurements in centimeters so, of course, I figured it out on my calculator. It turned out it was 9 inches by 10 inches by 5 inches.
SROCF: What happened when they finally did the biopsies? What were your initial thoughts on them taking it?
Trish: He had told me beforehand if I see anything then if it’s cancer, I’m going to take whatever have to take. I was already at a point where I knew I wasn’t having kids, so I said to take it all. The cyst they took off the one ovary was benign, then he did some biopsy-ing around and didn’t see anything more or they would have removed it.
So I went home, and then went back in for a follow up a week later and he tells me that they found cancer in the other ovary they left because he didn’t want to do a full hysterectomy to send me into menopause prematurely. So I was just like, “Okay,” and he said, “You can react.” I said, “Well, I just want to know what we need to do because we just need to move on. There’s nothing I can do about it.” So he said, “Well, we’re going to have to do a complete hysterectomy.” And, I said, “Well, whatever needs to be done.”
At that point, we didn’t know what stage it was, and it turned out that it was only stage one. So I was so, so, so lucky, which is why now I’m a big mouth advocate for awareness.
SROCF: That’s incredibly lucky you caught it so early.
Trish: Yes, but then he told me as precautionary measure, I needed chemo. Of course that kind of like hit me hard. I love my doctors because they’re very straightforward and matter of factly. So, they told me I can forgo the chemo but there would be a high percent chance that it would come back, but if I did the chemo it would drop down to about 5% since I was only at stage 1. I said to myself, I can be without hair or whatever and be uncomfortable for a few months, since I only needed three rounds.
So I did it. It was from August to September and I did end up losing 90% of my hair. I always wore hats before so I just kept doing that. I tried wearing wigs, but it just didn’t feel like me. So, I went with hats. I’ve always been known for crazy headwear so I was just really playing it up.

SROCF: That’s amazing that you were able to be so positive about your diagnosis and feel confident in yourself. What were your friends and family’s reaction to your diagnosis? Did they play a huge role in your positivity throughout it all?

Trish: I had a great support system in my friends. They were just so amazing from bringing me to my appointments and coming over and just hanging out with me. I’m just forever grateful for that. Here I am three years later, and the counts are lower than ever.

SROCF: What were your thoughts when you originally got the diagnosis, and tell us what was going through your mind?

Trish: When he first told me I couldn’t react. I think I was kind of in shock because I wasn’t thinking that. I was good until I went out to the car where one of my friends was, and he’s like a dad figure to me. I got in the car and he said, “So what’s going on?” and that’s when I lost it.
Initially when I was told I felt ok, and then once I got in front of somebody that I was close to, that’s when I lost it. It was hard to tell my boyfriend and my mother and friends, but the more I talked about it the better. I don’t want to say it was easier, but yeah, it got easier. I had a plan in place and I was going to kick its ass.

SROCF: Over the past couple of years, have you ever had any more potential scares or other signs of a recurrence?

Trish: Well, I’ve noticed now from talking to other survivors, any little thing is a scare. Whether it’s a bump or whatever. So there’s been nothing that has turned out to be anything, but you’re in a different mindset.

SROCF: Do you regularly go for checkups every once in a while, or just when something doesn’t feel right?

Trish: I go to both my oncologist and my surgeon every six months. At first, it was three and then my counts have been fine, so they set me out to six months, and then after I think five years, it’ll be every year. I’m good with going as often as I have to because I don’t want it to come back. I don’t want it to be six months in between and then they find something that’s too late.

SROCF: As a survivor, we know that you do a lot of fundraising in the Florida area. Can you talk to us a little bit more about your most recent fundraiser and how you got involved with Sandy Rollman?

Trish: Sure, I actually got hooked up with Robin Cohen and Sandy Rollman through social media. They were having an event, and I contacted her and that’s how the relationship started. I did an event last year and the money went to a local charity in Florida. I wasn’t looking for another organization, but when I had contacted Sandy Rollman through Twitter, someone was messaging me and I thought it was an admin. They told me they’d call me, and it was Robin herself.
I was so impressed. Wait, like the CEO of this organization would take the time to call me about an event that I might not have anything to do with. I ended up going to Philadelphia, and now, I’ve been up there three times in the past six months to go to events with Robin and the Sandy Rollman team.
I said to Robin, “I’m going to have my Team Teal event, and I would really like the money to go to Sandy Rollman.” And she of course said, “Yes, and anything we can do to help,” and they were a big help with letting me have paperwork and authorizations to collect donations on their behalf.

SROCF: We’re so happy to get connected and that we are able to continue working together to help the foundation and spread awareness.

Trish: I believe it was definitely some kind of divine intervention. One major reason is Sandy Rollman does a lot of events in conjunction with General Hospital, and I’ve been a fan my whole life. That was the first event I saw, and I believe everything happens for a reason.
In Florida, the first event that I did was very impromptu. I decided when I was out with my friends, and I was booking a singing gig. I was on the phone with the owner and all of a sudden I just said, “Hey, can I have a fundraiser there?” And it turned out that I gave myself two weeks and six days to plan it.. I’m pretty good under pressure, so I ended up doing it. It was successful for the amount of time we had to prepare and raised about $2,700.

SROCF: That’s incredible for such short notice, and every little bit counts.

Trish: I was really fortunate, and I did most of the work myself. This year, I got some of my friends to help me collect donations, make baskets, set up and break down everything for the event. So, I had it a little more organized and gave myself a lot more time. I was really thrilled because I wanted to beat last year of course. I wanted to do at least $3,000 but in my head, I had a bigger goal of $5,000. We ended up raising right around $6,500.

SROCF: That’s so amazing, and now that you’ve been working on this so long, the word has been spread a little bit more each time, so that’s awesome to just know you’re continuing greatness. When did that event take place?

Trish: Saturday the 28 in September. For three hours, we had raffles, a silent auction and a DJ, who is a friend of mine that donated his time. I had a photographer who donated his time, as well, and even a poker table so anyone could get involved if they wanted! Now I see what I can improve on from there and start building my team now for next year and make it even better. I joked with Robin that I’m the unofficial Florida chapter of Sandy Rollman.

SROCF: How has going through this whole process of your diagnosis and overcoming ovarian cancer changed you? Is there any advice that you would give to other young women who are recently diagnosed, or maybe don’t know what symptoms they should even look out for?

Trish: I never ever would have thought that having ovarian cancer would make my life better, but it has because the connections I have made and the women that I have met. I was so fortunate that I was only stage one. I’ve met women diagnosed as stage four, and I realize how lucky I am and my life has been made better. As for women, they just need to know the symptoms. They need to be advocates for themselves. I’m very lucky because back then, who knows if I just said, “Well I’m not going to go back to another doctor I’m just going to try and lose weight”. Women really just need to learn about the disease and spread the word and if you’re diagnosed, you just have to come up with an action plan and you have to be a fighter. Finding it early is the best thing they can do. So we just really have to know our bodies and when something is off. We have to stop and take care of ourselves, and that’s the best thing I can tell everyone, especially young women.
This disease doesn’t discriminate. The best thing that you can do is just be educated and if, God forbid, you’re diagnosed, learn everything you can. Spread the word of awareness and just fight.

Sandy Spotlight on Kelly Collevechio

September 3rd, 2019

Almost four years ago, Kelly Collevechio spoke with WHYY’s Maiken Scott about her pregnancy journey which then became her fight to battle Stage 3C Ovarian Cancer.

The Sandy Rollman Ovarian Cancer Foundation sat down with Kelly Collevechio four years later to discuss everything that has transpired since her two beautiful babies, Brielle and James, were born in 2015 and everything that ovarian cancer has taught her about family, love and living life to the fullest.

SROCF: Can you share a bit about your story?

Kelly: It all started with my husband and I trying to get pregnant. A couple of tests led me to a surgery where they biopsied and ultimately found that I had a borderline papillary serous tumor with a microinvasion in the lymph nodes. This automatically got me diagnosed with stage 3C, since it was in my lymph nodes. I was then able to do egg harvesting over a period of six weeks, and then went right into six months of chemo treatment.

SROCF: After your first surgery, what were the next steps of the process and treatment?

Kelly: I went right back into the OR a week later to do my staging surgery and that’s when we learned it was Stage 3C. I was lucky enough to be working with my gynecologist and oncologist as well as my reproductive endocrinologist who also worked very closely to determine that they could actually take the time to harvest my eggs. It was obviously a lot to take in at once, with the whirlwind of hormone injection shots every day, but I’m so lucky I did that. I might not have had the knowledge to even ask questions like that, so it was great that they worked together as a team to help me through all of it.

SROCF: Did you have symptoms, or did it ever cross your mind that you may have ovarian cancer?

Kelly: I had absolutely no symptoms. Growing up, I always had irregular periods and was told that was normal. I could go 20 days in-between and then 45 days in-between my periods, but other than that I had no symptoms whatsoever. I even think back because I had just gotten married and I wanted to diet before my wedding so, naturally, I thought, “are my pants just not fitting or was that bloating? Should I have known?” But other than that, nothing stood out the me.

SROCF: Were any other masses found after your first surgery?

Kelly: At this point, I still had one ovary and my uterus, but because my cancer was of the ovary, I was definitely weary about getting pregnant all together. I checked with my oncologist, my fertility doctor and I went for a third opinion to find out about what the research said about getting pregnant and if it could cause a recurrence. All three said it was perfectly safe and that there was not enough evidence to suggest it would cause a recurrence.

Fast forward nine months, during my c-section asked my doctor, “do you see anything growing down there?” All I remember is him responding with, “funny you should ask.” Sure enough, the washings they took came up consistent with the previous tumor I had before.

SROCF: After you gave birth to James and Brielle, what were the next steps and the doctor’s treatment plans?

Kelly: Two days before Christmas, I went in and found out I had two more tumors on my other ovary that had spread to my uterus. The doctors decided to perform a radical hysterectomy. That was only two months after the twins were born. All of the other biopsies of the lymph nodes and the surrounding organs were clear, which was great news, and I didn’t end up needing chemo this time around.

SROCF: Over the past couple of years, have you had any other potential scares? Is this something you think about often?

Kelly: It’s something I think about all of the time. It’s really hard to get out of my head. Even just this week I started having pains in my right pelvis, and I got scared. I immediately booked an appointment with my doctor; we did the CAT scan, and everything was totally fine, and my tumor markers are at an all-time low. So far, so good.

SROCF: Obviously having two beautiful, healthy babies is probably helpful to keep your mind off of it too.

Kelly: I can’t even think or talk about it without getting choked up because it’s just so crazy the way it all happened. It really was just in time, and it’s crazy that I was able to keep my uterus for just those nine months. It’s a blessing.

SCOCF: Are there any words of encouragement or something you would like to pass along to other women going through this?

Kelly: I know it’s cliché, but I am being very honest, very real and very raw when I do say something like this has taught me never ever take another day for granted as long as I live. I want to soak up every moment of everything, and I believe this pushes me to take the kids everywhere and do everything with them. I would say just enjoy life. It’s the ride, and be happy in everything you do.

If anyone is dealing with infertility issues, or any kind of female issue, and they’re on the fence of whether or not to seek medical evaluation – do it. I hope you’re reading this article and that you think of me. Call and make an appointment. You might think it can’t happen to you until it does, and I believe it’s always better to be safe than sorry.

SROCF: As an ovarian cancer survivor, is there anything you or your family does to give back to the ovarian cancer community?

Kelly: Yes, I have two sisters who do most of the leg work with fundraising. My whole family are all go-getters and front runners. Almost every year, we fundraise for Sandy Rollman Ovarian Cancer Foundation. This year, we sold over 200 tickets for the upcoming Phillies game on September 12. Click here to buy tickets for this year’s game! We try to do everything we can to spread awareness.

SROCF: Do you and your husband think about how you’ll tell your kids the journey you took to getting pregnant when they’re older and can better understand?

Kelly: I was actually trying to keep them from seeing any old pictures or knowing about it just because I didn’t know how they would react. Brielle ended up finding some old pictures of me during chemo, and I looked at my daughter and said, “Do you know why I look like that?” and she said, “You were sick.”

I got chills everywhere. And she just said, “I’m glad you’re not sick anymore.” I’m crying even thinking about it right now, but she just put down the picture and started doing something else. It was really sweet and small, but she just knew. Now when I cry it’s a good cry. I’m blessed beyond belief, and I’m forever grateful for every day.

The Philadelphia Inquirer sits down Robin Cohen

August 30th, 2019

Last month, Sandy Rollman Ovarian Cancer Foundation’s CEO Robin Cohen spoke with The Inquirer to discuss what you need to know about ovarian cancer. Robin opened up about her inspiration to start the foundation, and shared what she, an experienced oncology nurse, wants every woman to know about the often silent or unnoticed symptoms of the disease that impacts so many.

“I was very young, and I had a lot of self-doubt. But I remember going into another patient’s room at the time. She was dying of ovarian cancer. I told her what I was thinking. It took all her strength, but she raised up off the bed and took my arm and shook me. She said, “You go out and fight for us.” That was a defining moment for me.”

Robin recalls a time when she was speaking to Sandy Rollman, the woman behind the foundation and where it all started. Now, she reflects on four important things that people need to know about when learning and dealing with ovarian cancer.

Listen to Your Gut

There aren’t always symptoms and there are no screening tests for ovarian cancer, but it’s important to listen to your body. Listen to your gut and be your own best advocate. Robin believes that all women should be getting tested when visiting the doctor for their annual exam, and sometimes you have to be your own best advocate and speak up.

Don’t Wait to Get Involved

Don’t wait to do something about ovarian cancer until it touches your life. We need more people involved and supporting patients, families and researchers. One in 78 women is diagnosed with ovarian cancer, and more often than not, it’s at a late stage so she will have a higher risk of recurrence.

Survivor Programs

The Sandy Rollman Ovarian Cancer Foundation implements survivor programs to promote strength, unity and support, so no woman should feel alone in her journey with ovarian cancer. Survive and Thrive brings ovarian cancer survivors together to help improve their overall wellness and quality of life. We teach them skills they can utilize during their treatment and beyond. With a Little Help From Her Friends is a peer-to-peer mentorship program that connects newly diagnosed patients with survivors. Hearing another woman’s voice in that same situation is very comforting and encouraging. It’s important to learn and listen to ovarian cancer survivors to help women and their families feel like they have a true support system as they endure and overcome this disease.

The Sandy Rollman Ovarian Cancer Foundation helps make the ovarian cancer journey a little bit easier and less overwhelming for women and families. It strives to help in the decision-making process, understand the depths of this disease and how to remain strong and seek the help and guidance needed.

To read Robin’s full article on Inquirer.com, visit: https://www.inquirer.com/health/ovarian-cancer-research-sandy-rollman-20190808.html?__vfz=medium%3Dsharebar

The Story of Tennis for Teal

June 11th, 2018

Tennis for Teal pic

 

Elaine Boswell and Nan Barash believe they were destined to meet. In March 2015, Elaine was forced to find a new place for her tennis contract as her normal venue was closed for renovations.  She and her group found a temporary home at Radnor Valley Country Club (RVCC) where Nan belongs and plays.  As Elaine was walking off the courts and up the stairs, Nan greeted her and asked for Elaine’s email. She seemed to be leading the group.  Nan thought she might want to play with the RVCC team in the future or get together for a friendly match.   When Nan took a look at Elaine’s email, she asked what 0721 stood for and Elaine shared it was her birthday.  Nan responded that she could easily remember her email and her birthday as it was the day after her son’s.  Shortly thereafter, Nan sent an email in follow up and Elaine’s response was simply something had come up and she would not be able to play tennis with Nan at this time.  Nan didn’t really give it another thought.

Fast forward to spring of 2016 and Nan was having dinner with the Executive Director of the Sandy Rollman Ovarian Cancer Foundation (SROCF), Robin Cohen. Nan had recently joined the board of the SROCF.  Robin was talking about the organization’s new successes of the past year and mentioned a woman by the name of Elaine who had a Round Robin Tennis for Teal event the previous November at Springton Tennis Club and raised $8,000 as part of her recovery from Ovarian Cancer.  She thought Nan should meet Elaine.  She said if nothing else Nan could play in the event this year. Robin then invited both Nan and Elaine to join a conference call the following week for brainstorming for the 2016 SROCF gala. As everyone on the call introduced themselves, Elaine and Nan quickly remembered their chance meeting back at RVCC.  This had happened shortly before Elaine was diagnosed with Ovarian Cancer.   Robin had to interrupt their conversation, recognizing one another on the phone, so the group could get back to discussing that year’s SROCF gala!  Nan & Elaine promised to have lunch and talk about the Tennis for Teal event and see how they could make it grow for 2016. That lunch started a friendship of two women who were very strong, determined tennis players touched by Cancer in different ways.  Nan had lost her father to Cancer at age 13, and a dear friend to Ovarian Cancer in January 2013.  Elaine and Nan would become the local Tennis for Teal team to increase awareness and revenue for SROCF through Tennis for Teal.  The second year, in addition to Springton,  Nan helped Elaine include two more clubs- Delaware Valley Tennis Academy Bryn Mawr and Brandywine Racquet Club.  Each of them ran a venue and Elaine’s family ran a third one. They added Elaine’s name and a logo to the annual event and with three locations, raised more than $16,000 in 2016.   In January of 2017, a 30 + year media friend invited Nan to attend a press conference at Saint Joseph’s University where Billie Jean King (BJK) and the Philadelphia Freedoms would be playing their matches for that summer.  She asked if she could bring her friend Elaine along for the event, which was welcomed.  As Nan and Elaine made their way into the stands, they contemplated walking right up to BJK to say hello when she walked onto the courts.  Instead  they waited and decided they would approach her after the press conference was over.  Elaine quickly figured out who BJK’s General Manager was, walked up to her, said hello and asked if she could just have a few minutes with BJK. Meanwhile Nan went behind the bleachers and found a few old tennis balls to grab a BJK autograph or two for the 2017 Elaine Boswell Tennis for Teal event.  As Nan & Elaine waited their turn in the line, the woman in front of them told her the story that her mother burned her bra when BJK beat Bobby Riggs.

BJK asked the question out loud, “What would have happened if I had not won that match?” That was the ice breaker for next up!  Elaine proudly extended her hand to BJK.  She said her name and announced that she was an Ovarian Cancer survivor.  Then she asked if BJK would sign the tennis balls for her event. BJK immediately took Elaine aside and wanted to hear her story.  She was curious about her diagnosis, symptoms, treatment and the testing available as she had recently lost a friend to Ovarian Cancer. Elaine shared her survivor story as well as the successes of the Tennis for Teal events and BJK said she wanted to help and to stay in touch. Elaine walked away promising she and Nan would work together to figure out a way for BJK to help.

Then this past July, Nan was invited to a VIP event at the Freedom’s tennis and asked if Elaine could join her which was again no problem. Nan shared with Elaine she learned early on in the media world when meeting famous people, “make sure you are last in the line, you get the most time with the person.”  So they patiently waited with clean new Tennis for Teal hats in hand this time for BJK autographs and Elaine was going to ask again for BJK’s help.  As BJK approached Nan and Elaine, it was the first time in their special friendship that Nan witnessed Elaine without words.  It all of a sudden hit Elaine that she was asking tennis legend BJK for help for her small local tennis event.  While Nan was sure she was going to need to do the talking, Elaine’s words finally came out and asked again about the possibility of her helping with Tennis for Teal. This time BJK asked for Elaine’s card, which she did not have, and she promised she would help.  Nan handed her one of her business cards.  As BJK walked away, Nan shared with Elaine that her cell phone was having trouble receiving in-coming calls.  As only Elaine Boswell can say it, she told Nan, “You better go get yourself a new cell phone, pronto.”  Then she quipped, “I am retired, what would my card say, Ovarian Cancer Survivor.” Before leaving the VIP event, Nan asked Elaine to stand in front of the cut out for the upcoming release of the Battle of the Sexes Movie.  Elaine said, “What are you going to do with this picture?”  Nan replied, “I don’t know, but we are going to do something. Now put your arm around BJK’s (Emma Stones) and smile!”

And that they did!  The Bryn Mawr Film Institute (BMFI) had been generous with ticket donations for both of the Tennis for Teal events and their director encouraged Nan to stay in touch if she could ever help in any other way.  That kind offer had never left Nan’s head.  After taking the photo of the movie cut out, Nan negotiated with BMFI for discounted movie tickets to allow SROCF to have a night at the movies with Battle of the Sexes on October 11, 2017.  It would be a perfect kick-start to the 2017 Elaine Boswell Tennis for Teal event, which was scheduled for November 11, 2017.  Of course Nan & Elaine invited BJK and she thanked them for the invite but she was unable to make it because she would be in Los Angeles that night for the movie release. She wished them good luck and thanked them for promoting her movie. They took pictures of the successful night of selling out the movie theatre and sent them along with another note to BJK.  They now had her attention!

After raising more than $23,000+ at the third annual Elaine Boswell Tennis for Teal event last November, Elaine looked Nan square in the eyes during clean up and said “I need a break and I  just want to show up just like I did at the night of the BJK Battle of the Sexes Movie.”   Nan assured her they could figure something out, but they could not stop the momentum they had built in the tennis community in this area.

In December 2017, Nan was invited to join a phone call with BJK’s GM who wanted to know how she and Elaine sold out the movie theatre and did they think they could do the same for Philadelphia Freedom’s tennis. Could BJK use the name Tennis for Teal for such a night at the Freedoms? Nan said absolutely and now the 4th annual Tennis for Teal event will include a VIP pre match reception at the July 24, 2018 match at Saint Joseph’s University in Philadelphia, PA.  This time the players who enjoyed the friendship and tennis on the courts of Tennis for Teal will need to leave their racquets at home, put on their best teal outfit and come cheer on Elaine and the Philadelphia Freedoms to raise awareness and funds for the fight against Ovarian Cancer.  And best of all, BJK has kept her promise to help Elaine and to all the other women fighting Ovarian Cancer and Nan has told Elaine to just show up!

Look forward to sharing this event with you and BJK!

To purchase tickets, visit http://bit.ly/tft-freedoms. Tickets include a VIP pre-match reception which will include some very unique raffle items!

 

When diagnosed I knew I had 2 choices- take the treatments and be on my merry way OR share my story so people could not only learn about ovarian cancer

September 18th, 2017

 

Randalynn

 

January 19, 2017, the day I left my “before cancer” life behind and received the news I had ovarian cancer.  Although I’d prepared myself for the worst, I don’t think you’re ever prepared for that kind of news.  At age 36, I was diagnosed with Stage 1C ovarian cancer, nothing I ever saw coming, hit us all out of left field.

I am one of the 15% found in the early stages and I consider myself very lucky.  Did I know I was sick? No, I did not.   Did I have the normal symptoms? Yes, all but one, BUT I had a million other things going on and they masked themselves as stress related issues due to my personal and work life being a complete mess.  I blamed the weight loss and inability to eat on nerves; the fatigue on having a stale exercise routine, so I was going to change it up, which ended up being a change that would save my life. That’s what makes ovarian cancer so tricky, the symptoms can all be signs of something else.

How did they find it? A CT scan checking my appendix, which they thought had ruptured due to my symptoms and age, instead revealed a melon size cyst on my right ovary. At the time, my OB/GYN thought this was nothing more than a dermoid cyst, I went in for surgery to have it removed and when the “well we’ll  have the results in a day or two” turned into a week later, I knew something was wrong and it was probably more than likely cancer.  Sure enough, it was.

6 rounds of chemo later, I’m still standing and I’m here to break the silence and create awareness about this silent killer.  I’m  a  single mom of 2, now 37 years old, and it’s crazy to me that we don’t have a reliable test in place to screen for ovarian cancer. What’s even more crazy is that the majority of people who’ve asked me how long it had been since I’d had an annual exam- ovarian cancer cannot be detected this way -the confused looks on their faces still run through my mind.

When diagnosed I knew I had 2 choices- take the treatments and be on my merry way OR share my story so people could not only learn about ovarian cancer, but see what a cancer patient actually goes through during this process of diagnosis, treatment, tests and life after treatment.  I selected option two, sharing my story to help other women and spread the word about this awful disease.

With Ovarian Cancer Awareness Month upon us I’ve set a new goal for myself  selling hats (which are FANTASTIC  soft and comfortable if you’ve lost your hair)  in order to raise funds for research, education and care packages.  How many, you might ask — a few — My goal is simple, selling 22,440 hats in 2017, representing the number of anticipated women who will be diagnosed this year.  Everyone needs a push goal, right??? I have one as well, an additional 14,080 honoring those who will lose their battle this year as well.

Potentially we’re looking at $438,000. Why am I doing this? Simple, I’m one of the lucky ones -I’m one of the 15%. I knew going in “cured” is a word they felt strongly I am going to be able to use, “NED” would follow after treatment stopped and because of all of that, I am choosing to do what I can in order to change the statistics in order for more women to be able to say the same. My hope is with your help we’ll be able to put 36,520 teal ribbon hats on melons across the country and more people will know about ovarian cancer because someone will ask “what’s the teal ribbon for?” and whomever is sporting the hat will be able to say why they are wearing the hat, to create awareness about ovarian cancer.

For more information on me and the fundraising efforts, please visit www.kickovariancacner.com.  The week of September 18th, all funds raised from hat sales will be going exclusively to the Sandy Rollman Ovarian Cancer Foundation.

 

 

 

 

 

Learn more about the incredible journey that has brought us here!

September 15th, 2017

Posted:09/15/2017

Sandy web with writing© Tessa Marie Imagesss0265

The Sandy Rollman Ovarian Cancer Foundation (SROCF) humbly began 16 years ago, on a living room floor, with the goal to give women a fighting chance against ovarian cancer. At the heart of the foundation is Sandy Rollman, a remarkable woman who lost her battle to ovarian cancer in 2000 at far too young an age. Sandy’s oncology nurse, Robin Cohen, and sister, Adriana Way, first came together to fight for her when she couldn’t fight for herself any longer. They created the Sandy Rollman Ovarian Cancer Foundation in her memory while trying to prevent other women from having to endure the same pain as she did. When first trying to connect Sandy with another survivor, Robin discovered how few resources and support services there were available to women with the disease. From inception, the SROCF set up a monthly meeting to make sure that all women with ovarian cancer had a place for support and to connect with other survivors. Robin says that even at their first meeting a woman admitted “I thought I was the only one.” The Sandy Rollman Ovarian Cancer Foundation works tirelessly to ensure that no woman with ovarian cancer ever feels alone. These women know that we’ll be there with them, no matter what.

“We knew that if we were going to make progress against this disease, we needed to do more than build an organization. We needed to build a Movement. Building a movement was tough but exciting. We built it by people working together. Watching it grow and seeing the impact of our work has been incredible. People drive hope from it and from us.”

Today, the Sandy Rollman Ovarian Cancer Foundation works to unite the community together to promote awareness of ovarian cancer through education about the disease, research funding, and advocacy. The organization also provides programs to support their mission of awareness, advocacy, and support. The With a Little Help From Her Friends Support Program connects a newly diagnosed woman with a survivor who is comparable in age and diagnosis. The mentors provide one-on-one support through phone calls and in person meetings, ensuring that every ovarian cancer patient receives the support they need and deserve. In fact, many of the women then come back and act as mentors to newly diagnosed women. The organization will launch a new survivorship program “Survive & Thrive” this month.

Every year, through donations and special events, the Sandy Rollman Ovarian Cancer Foundation funds research to find a cure for ovarian cancer, a screening test for early detection, breakthrough treatments and improve the quality of life for those living with ovarian cancer. This year, the SROCF reached an incredible landmark-  granting over $3.7 million dollars to fund research! In 2015, the SROCF embarked on their most ambitious project to date; committing half a million dollars to help fund the Stand Up to Cancer Ovarian Cancer Dream Team. The Dream Team focuses on treatments for ovarian cancer patients today and prevention and early detection of the disease. “This research grant “is a big step, but an exciting one” for the impact it will make on ovarian cancer prevention and early detection. The commitment to research funding and the support they give to patients and families are what we are most proud of, “that even in the midst of all the sadness surrounding the disease, in some small way we’ve played a role in someone’s survival.”

Since coming together on just a living room floor, the Sandy Rollman Ovarian Cancer Foundation has grown into a well-respected organization dedicated to funding cutting edge research and educating the public about the disease, all while supporting women diagnosed with ovarian cancer and ensuring no woman ever feels alone. What started with two people and one idea has grown into a movement because of people working together and supporting each other. Please join us!

I am that one in 75

September 5th, 2017

Becky Blog

September 7, 2017

My name is Becky and I’m 40 years old. I am that one in 75 women who will be diagnosed this year with ovarian cancer. I am a survivor. 

I started noticing in October of 2016 that I was having GI symptoms. I was having an upset stomach after a big meal and an increased in acid reflux. I thought my gallbladder was acting up and needed to be removed. I am very active and recently lost a lot of weight through diet and exercise. I thought that I was unable to tolerate certain foods due to a change in my eating habits. Starting in November, I was having minimal amount of vaginal spotting that would come and go. I also ran a half marathon in Disney World and had a lot of GI upset that week resulting in eating very little. I made an appointment with my OB/GYN for an evaluation. At the office, we talked about my symptoms and it was the thought that I messed up my cycle because of the weight loss. My doctor recommended putting me on birth control to control the bleeding. During an internal exam, she recommended a pelvic ultrasound just to make sure it wasn’t anything else. On December 30th, 2016, I had a pelvic ultrasound and afterwards, the doctor escorted me into her office to review the results. My OB/GYN doctor told me that I had a large cyst that needed to be removed with surgery. I was in complete shock. She assured me that it looked like a mucous cyst and was most likely benign. I was told I was “too young” for cancer and not to worry. She scheduled an MRI to look at the cyst more clearly and drew a CA125. My CA125 came back at 70. On December 5, 2017, I had a MRI. I received a phone call two hours after my MRI stating that the results were concerning and that they scheduled an appointment with a GYN oncologist the following day.  The following day, I met with the Gyn Oncologist.  After an exam and going over the MRI, the Dr.  stated that she wasn’t sure if the large mass was cancerous or not. Regardless, it would need to be removed. We went over every option in the case that mass was malignant. On January 30th, I underwent surgery not knowing if I had cancer or not. When I awoke from anesthesia, I turned to my mom to ask if I had cancer. But in my heart, I already knew the answer. I was diagnosed with stage 1c endometriod adenocarcinoma of the right ovary. The surgical team removed the mass, both ovaries, omentum, appendix and lymph nodes. The Dr. also performed a D&C on my uterus. The cancer was contained in my right ovary, but it crumbled during surgery. I was informed by the team that I would need to receive 6 rounds of chemo because of that. As I recovered from surgery, I prepared to start chemo. I had a port placed on March 3rd and started my first round of carboplatin and taxol on March 5th. Because of the taxol, I started losing my hair and was on disability from work due to my position as a nurse and a high risk of infection. Even with so much stress and loss, I never felt stronger. I was determined to beat cancer and get back to my new normal. On June 28th, I finished my last round of chemo and rang the victory bell. It was such an emotional day to realize how far I have come from first being diagnosed. While I recover from surgery and head back to work, I am starting a new fight. That fight is to increase awareness in this disease. Cancer does not discriminate. Ovarian cancer affects all ages and races. I learned so much from this journey and have met so many incredible people. Most importantly, I learned that I am truly a survivor. 

You Have the Power Inside of You

March 15th, 2017

March 15, 2017

She is Fierce featured the story of our Founder, Robin Cohen. Read it here.

 

You-Have-the-Power-Inside-of-You-