Shannon Miller survived germ cell ovarian cancer | BEP chemotherapy | laparotomy | neuropathy

DESCRIPTION

Shannon Miller won seven Olympic medals as a gymnast in 1992 and 1996.  She did so against topflight competition, but years later, she faced a more formidable foe: a diagnosis of ovarian cancer.  Her tumor was successfully removed through a procedure called a Unilatera Salpingo-Oophorectomy, but two weeks after that, she learned it more malignant than originally thought.  Aided by the mental toughness she exhibited as an elite athlete, Shannon went on a grueling, nine-week regimen of BEP chemotherapy and reached survivorship. 

In 2011, Shannon experienced bloating, stomach aches and weight loss.  She dismissed them as symptoms attached to her just having had a son.  When it came time for a checkup, she told her doctor she felt fine, but after a scan, Shannon was told she wasn’t fine because the scan revealed a baseball-sized cyst in her left ovary, and that surgery was needed.  At that time it was not known if the cyst was benign or malignant.

At first she had to sit through an agonizing four to five weeks of ‘wait and observe.’  Shannon underwent a laparotomy and a unilatera salpingo-oophorectomy, in which the left ovary was removed and with it, the tumor.  Shannon was a bit woozy from her various medications when she regained consciousness.  It was then that she was told the mass was cancerous.  Shannon and her husband felt like celebrating because the cancer had been removed.  However, bad news was around the corner.

About two weeks later, she received a call from her oncologist.  He said that the tumor had a higher degree of malignancy than originally anticipated.  This meant Shannon would have to undergo nine weeks of extremely aggressive chemotherapy, BEP chemotherapy. She said it was the hardest thing she had ever had to do.  In addition to the predictable hair loss, there was the nausea in addition to hydration issues, all this while was trying to raise a toddler. 

In an early stage of the nine-week regimen, Shannon questioned whether she could complete it; but she called on the mental toughness that enabled her to excel as an elite athlete, finished the chemo on May 2, 2011, and was declared cancer free.  She was nauseous for another year and says to this day she sometimes has cognitive issues, but experienced continued progress and began to feel a little better and a bit more like herself with each passing day.

Shannon Miller says hers is a journey with no finish line.  She tries to survive each day and is grateful for the life she enjoys with husband and two children.

Additional Resources:

Shannon’s website: Salto Health https://www.saltohealth.com

TRANSCRIPT

Bruce Morton: Greetings.  This is the @CancerInterviews podcast, and I’m your host, prostate cancer survivor Bruce Morton.  It is not often that we have an elite athlete as a guest, but Shannon Miller of Jacksonville, Florida won seven medals as an Olympic gymnast in 1992 and 1996.  This was done against fierce competition, but later she was faced a much tougher opponent: a diagnosis of ovarian cancer.  Shannon reached survivorship and she has a powerful story to tell, and to this day she does plenty to help others on a cancer journey.  Now, here she is and Shannon, welcome to Cancer Interviews.

Shannon Miller: Thank you so much for having me on.

BM: We want to start out the way we always do and that is to learn more about you and your life away from cancer and away from the Olympics.  If you would, tell us a bit about where are from, what you have done for work and what you like to fun.

SM: I am from Oklahoma.  I grew up and trained in Oklahoma.  I am a transplant to Florida.  I married and moved to Florida.  I love it here.  I have had two kids, so they keep me busy along with my company and my focus on helping other survivors.

BM: Before we get to your cancer journey, we would briefly like to hear about your Olympic experience.  This is going to be difficult, perhaps, asking you to cram a floodtide of memories into a thimble, but if you think of one enduring memory from your competition in Barcelona and Atlanta, what would it be?

SM: For me, it always comes back to 1996, walking into the Georgia Dome the night of the team final.  You walk through this curtain and walk into the arena, and it is 40,000 screaming people, this sea of red, white and blue, the audience is going absolutely nuts.  I had never heard anything that loud.  You could feel in your chest.  You could feel this amazing love and support that was being poured into us and it was at that moment where the nerves and the anxiety and the fear and the excitement and the understanding of history, all of it collides right before you start your first event.  It was just pretty surreal.

BM: As to your cancer journey, Shannon, when did you initially notice that something wasn’t right?

SM: Well, I am one of those stories of ‘don’t do what I did,’ which was to completely ignore the signs and symptoms I was having.  I had just had a baby, he was a year old at the time.  I was already working in the healthcare community.  I was hosting a radio show with regard to health and wellness, and we were talking a lot about cancer awareness.  It was about that time when I had my regular exam coming up.  I was going to call and cancer because of another commitment.  I called up and was put on hold and suddenly felt so guilty because here I was an advocate for women’s health and I was not walking the walk.  I asked to be put on a waiting list, but she had me come in that same morning.  I specifically told my doctor I felt fine, had no issues and wanted to conclude the visit as soon as possible.  The doctor said nope, that I had a baseball-sized cyst on my left ovary and that there were steps we needed to take and it snowballed from there.

BM: What led to the diagnosis, although it sounded like you had already gotten one?

SM: At first it was a cyst, so they didn’t know if it was benign or malignant or if it would go away on its own.  I had to go through four to five weeks of what they call ‘wait and observe,’ most people have heard that and it is horrific.  Who wants to wait and see what happens?  I was very fortunate.  My physician was very proactive.  During the wait and observe phase, he kept doing tests, CT scans, ultrasounds, blood work, I was in for something almost every week, but I was still walking around like a zombie because you don’t know what is going and nobody can answer your questions.  Ultimately he consulted with an oncologist and the oncologist had me come in the offense in January of 2011.  He did one more ultrasound in his office.  He then said we were going to start the clock over again for another four weeks of wait and observe.  My husband was really excited, thinking everything was going to be okay.  I was devastated because I didn’t know if I could do another four weeks of waiting.  He did more ultrasound before I left the office.  That’s when he said I needed to be prepared for surgery because there is a mass that is not going away.  So, they had the surgery and when it was done, when I woke up, that’s when I got the diagnosis.

BM: Shannon, each of us is different in terms of our persona, in terms of our diagnosis and its acuity.  Given those variables, how did you handle this horrific news?

SM: Honestly, it is kind of one of those moments when you hear it, but you don’t believe it.  It sounds like they are talking about someone else.  It just didn’t quite hit.  Now, granted I was on various medications after surgery when they told me, but it took a little bit to sink in.  In my case, I got the diagnosis after the five weeks or so of wondering what was going on and after they had done the surgery.  The tumor had been by the time I found out it was germ cell ovarian cancer.  We thought, ‘it was cancer and so now I am good,’ so it was a little bit of a celebratory thing and then two weeks later when we found out that it was a higher malignancy that they originally thought.

BM: By the way, we hope you will find time to like and subscribe to our channel, and if you click on the bell icon, you will be notified any time we post an interview.  We also want to remind you that Cancer Interviews is not a provider of medical advice.  If you seek medical advice, please consult a licensed healthcare professional.

Now, when you learned about this diagnosis with increased acuity, that this could metastasize, again, I have to ask you the same question, how did you deal with that?

SM: I was actually leaving dinner with my husband and my son, and I though when your oncologist calls at 7:00pm, it is not good news.  We asked if we could call back when we got home, which we did, with husband and I each on a line as in those days we had landlines.  The doctor talked me through it, and I love the way my oncologist went about it because he was very direct.  I don’t need sugarcoating.  I need to know what I need to do, then I need to get to work.  That’s my mentality from being an athlete.  It is a little different in cancer, but he explained that it was a higher malignancy, but here are the steps we need to take.  We need to go through this aggressive chemotherapy.  He called it the hit-‘em-hard, hit-‘em-fast form of chemotherapy, called BEP chemotherapy.  He said it was going to be tough.  It was going to be grueling, but that I needed to get through the regimen without stopping.  Then we asked if I was going to lose my hair and they said yes, it would likely happen in the first two weeks.  I just wanted to be prepared for everything, and I really thought I was.  I was very stunned that night, but when I woke up the next morning, I think the competitive mentality that I had known through sport, that began to set in.  The goal is: nine weeks, just get through, do not stop.  That is going to give me the best chance.  I couldn’t do much physically after the surgery.  I couldn’t pick up my son for something like four weeks because of the laparotomy and the ultima salpingo-oophorectomy, which basically means they remove the left ovary and remove the tumor as well and remove lymph nodes as well.  So, I was still recovering from surgery, but I thought the mental aspect of sport is so important.  Any athlete will tell you that.  The mental aspect sometimes trumps the physical aspect.  So, I thought I would get in that headspace.  I am going to do this, but I didn’t realize just how challenging it was going to be.  Chemo was the hardest I have ever had to do.

BM: Shannon, I think you have already answered this, but I am going to ask you anyway.  Each type of cancer is different, and each type of cancer affords those diagnosed with varying numbers of options in terms of treatment.  In your case, did you have options, or did your doctor tell you there was only one way to go?

SM: In my case there just seemed to be the one way.  Ovarian cancer is already a rare disease and my type of ovarian cancer was a rare form of the disease, so there wasn’t a lot of research on it; but the type of chemotherapy, we were told this is the standard procedure, this is it.  So, I felt confident and comfortable.  I felt my oncologist consulted with an oncologist at MD Anderson who specialized in this rare form of ovarian cancer, so I felt good I was getting the right care.  I think for me, it was trying to understand the right process.  I had never been through something like this before.  It was a new world, a new language and I was trying to take so much in at a time in which I am also trying to be a mom and a new mom at that.  I tried to take care of everyday things and coordination and you have this new kind of weight that is on you constantly, so it is really the emotional and psychological along with the physical that can be so exhausting during that time.

BM: Shannon, you mentioned the BEP chemotherapy, you mentioned you had been forewarned you would be losing your hair; but there is much more to a chemotherapy regimen.  Food tastes like metal, there is fatigue, there are cognitive issues.  For you, what was the toughest part of chemotherapy?

SM: It’s all tough.  I’ll just say that.  The toughest part initially was the nausea and the hydration.  I was an athlete.  I understood hydration and the importance of it, and I figured I would just drink some extra water.  That was not helpful and I didn’t understand that ahead of time and I got behind the curve on hydration which made the nausea worse and there was just this downward cycle.  I landed back in the hospital after five days faced with the very real decision that I may have to stop chemotherapy.  It was all that I had to do was to keep going.  It was only goal.  The only thing they told me was to just don’t stop, but here I was.  I couldn’t keep food down, I couldn’t keep water down.  It was that night that really changed things for me because that night I was at my lowest of lows.  I was at rock bottom.  My husband had taken our son home to put him to bed.  It was just me in the hospital room and all I could think about was, “I don’t think I can do this.”  I know how to do a lot of things, but I cannot do this.  You cannot outwork cancer.  I cannot push out cancer and this treatment.  At that point, a nurse walked in.  I don’t remember what she did, but it was that word, “team,” that just came flooding back.  I just reminded myself.  I had a team in sport.  I had coaches and parents and trainers and people supporting me constantly and I never questioned it.  So, why in the world would I question it in health when I needed it most?  So, I started to get out of that mentality that I was burdening someone or complaining about being a bother.  I started to realize that I need to ask for help when it was needed.  I really started asking and it really changed the game for me.  I started getting the help that I needed because I was willing to ask for it.

BM: Shannon, I want to go back to a topic you had addressed earlier, but I am going to ask to try to extrapolate it in a way that will resonate with people who are not elite athletes.  We know that mental toughness is an ingredient for any athlete at an elite level.  Right now I am trying to imagine you being atop a balance beam in the Georgia Dome in front of 40,000 people.  Your coach can’t help you.  Your husband can’t help you.  Your best friend can’t help.  Everything you do is up to you and only you, and I am thinking of the mental toughness needed to succeed in that environment; but if you would, speak to someone who is not an elite athlete.  They are going to need mental toughness if they are diagnosed with ovarian cancer.  What would you say to them?

SM: I would say toughness comes in all forms.  There are so many ways to be tough.  It doesn’t have to be brutal strength.  It doesn’t have to be physical strength.  It can emotional and it doesn’t have to be perfect all the time.  You are going to have a roller coaster of a ride.  Go ahead and have that pity party.  It is good to have those real and raw emotions.  You have to get it out.  What I would say is that toughness comes when you least expect it.  Toughness comes from deciding to move forward anyway, from going through the neuropathy, the nausea, the losing your hair, the deciding to get up the next day and taking that forward step, anyway.  I have heard and I see cancer survivors all over, and I see it every single day.  You never really know how strong you can be until you just have to be.  So, strength is about getting up each day, finding one little piece of joy and deciding to take that next forward step.

BM: Now, Shannon, let’s talk about survivorship, your survivorship.  At some point, you had to sense things were trending in a good direction.  Describe that phase and what it was like.

SM: It took a while.  I finished chemotherapy May 2, 2011 and then I was declared cancer free that June, but as everyone knows, just because you ring the bell doesn’t mean it’s over.  I was still incredibly nauseous for another year, incredible fatigue, and if you haven’t had chemo, you have no idea what that fatigue is like.  It is like every limb weighs a thousand pounds.  It is crazy fatigue.  That was at least a year.  The brain fog.  You kind of learn along the way that you need to give yourself a little bit of grace because there is no finish line.  It’s just, ‘what does my life look like now?’ and how can I make the best of it.  For me, the turning point was probably a few years later, I started to feel a little bit better, a little more like myself and then found out I was pregnant with my second child, which we didn’t know was going to be possible after the treatment and surgery.  So, then I had another year and a half of nausea, but for a different reason.  After that, I think I started to focus on not just how to survive each day but how do I get stronger?  Instead of just doing a ten-minute walk each day, how do I gain weight?  I needed to focus on getting more protein in my diet when I can handle it.  All of those things had to start going into place and when I did that, I started feeling like I am getting back to myself again.  I started feeling energized, I started to feel myself again. 

BM: Our guest is Shannon Miller, who won seven Olympic medals and then she scored a much bigger victory when she survived ovarian cancer.  We had mentioned at the top that Shannon does things to help others facing a cancer journey.  I am just going to start off with these two words: Salto Health.  Tell us about it.

SM: Salto Health came about because I had done so much work over the past fifteen years in the cancer community.  I had kept hearing about survivors saying they didn’t know what they needed.  I would hear the same thing from caregivers.  There was just this gap between those two.  When someone is diagnosed with cancer, the people around them want to help, but they just don’t know how.  Salto Health is a platform, basically a gift registry where patients can share their practical products needs, like skin care, wigs, hydration needs and the like.  They can share those with a registry list and their community can show up with something that is truly helpful.  It makes it every easy for survivors when they are asked the question, “How Can I Help?,” and the patient can here is a link that provides the answer to that question. 

BM: If somebody wanted to avail themselves to these services, where would they go?

SM: Super easy.  Just go to https://www.saltohealth.com.

BM: Excellent.  Shannon, we are going to close with the question with which we usually close, and it goes like this.  If you encountered someone just diagnosed with ovarian cancer, they might have a lot of questions and you a lot of answers; but if there is one point you would want to make that are sure this person would take with them, what would it be?

SM: Ask for help.  Accept all the help that someone is willing to offer because it doesn’t make the road easy, but it does make it easier.  It makes it easier when you know you are not going through it alone.

BM: Shannon, thank you so much for sharing a story of perseverance and resilience.  Thank you for being with us on Cancer Interviews.

SM: Absolutely.  Thank you.

BM: That wraps it for this edition of Cancer Interviews.  We want to remind you as we always do when we conclude, that if you or a loved one are on a cancer journey, you are not alone.  There are individuals like Shannon Miller who have advice that can ease the cancer journey.  So, until next time, we’ll see you on down the road.

Additional Resources:

Shannon’s website: https://www.saltohealth.com

SHOW NOTES

Shannon Miller won seven Olympic medals as a gymnast in 1992 and 1996.  She did so against topflight competition, but years later, she faced a more formidable foe: a diagnosis of ovarian cancer.  Her tumor was successfully removed through a procedure called a Unilatera Salpingo-Oophorectomy, but two weeks after that, she learned it more malignant than originally thought.  Aided by the mental toughness she exhibited as an elite athlete, Shannon went on a grueling, nine-week regimen of BEP chemotherapy and reached survivorship. 

Additional Resources:

Shannon’s website: Salto Health  https://www.saltohealth.com

Time Stamps:

03:26 At first, Shannon ignored the symptoms that led to her cancer diagnosis.

04:31 She was told she had a baseball-sized cyst on her left ovary.

06:42 Her reaction to her original diagnosis.

08:25 Reaction to her revised diagnosis.

09:50 After the surgery, Shannon said she was physically limited.

11:09 Said she didn’t have treatment options.

12:57 Recalls the toughest part of her chemo regimen.

15:53 Shares this advice regarding approaching a cancer journey with mental toughness.

17:28 Describes her trending toward survivorship.

KEYWORDS (tags):

ovarian cancer

bep chemotherapy

unilateral salpingo-oophorectomy

laparotomy

germ cell ovarian cancer

shannon miller

neuropathy