9/10/2020

New Diagnosis

Season 1, Ep. 1

Welcome to the Ovarian Cancer Education Podcast, a podcast centered around a cancer diagnosis and what that means, a podcast created to help physicians and patients learn from each other, connect, and share stories and knowledge. Today’s episode will focus on new diagnosis and the basics of ovarian cancer.

Read the transcript:

Vanessa:
Welcome to the Ovarian Cancer Education Podcast, a podcast centered around a cancer diagnosis and what that means, a podcast created to help physicians and patients learn from each other, connect, and share stories and knowledge. Today’s episode will focus on new diagnosis and the basics of ovarian cancer. I’m Vanessa, and I’m joined today by my guest moderator, Rachel.

Rachel:
Hello.

Vanessa:
Hi, Rachel. We’re going to talk to ovarian cancer survivors, Emma and Bev. They’ll tell you a little bit about their stories and what they learned going through their journeys. Dr. Radhika Gogoi from the Karmanos Cancer Center in Detroit and Dr. Shitanshu Uppal from Michigan Medicine in Ann Arbor will also be joining us. They are gynecologic oncologists, which are doctors who specialize in cancers located in female reproductive organs. They’ll help us understand a bit more about ovarian cancer, and Rachel and I will help fill in the gaps. If you’re listening to this podcast, there’s a good chance that you or a loved one has been diagnosed with ovarian cancer, which can be a scary and uncertain time. This podcast will help provide information and insight, but there are also a wealth of other resources out there for you, and we’ve included some of those in the show notes for this episode. Let’s get started.

Rachel:
Can we talk about what kind of symptoms people experience that might make them nervous?

Vanessa:
Of course. Emma was only 26 years old when she knew something was wrong.

Emma:
It was the summer of 2015, and I think it was around June that I was in a yoga class and I was doing a little bit of a backbend and lying flat on my stomach and I could feel kind of a … I don’t know, it’s hard to describe, but something didn’t feel right. It kind of felt like there was … Of course, now I would call it a mass, but I didn’t have the terminology to describe it. It was just I noticed that something was a little bit different. There was kind of a tightness in my stomach and that was easy to ignore for a couple months.

Emma:
Then as time went on, I thought that I was gaining weight. I always think back … My mom used to tell me growing up that eventually I would hit an age in my late 20s or early 30s where my metabolism would slow down. She was like, “And you’ll gain weight. It’s something that’ll just inevitably happen to you.” And so of course, as I’m gaining weight inexplicably to me because I was exercising and eating well, I figured, “Well, maybe this is it. Maybe my metabolism is slowing down.”

Emma:
But it was getting to a point where it just really didn’t make sense to me anymore, where I really thought that I was eating really well, probably the best I had ever eaten in my life diet-wise, and I was exercising really consistently and it just seemed like I was continuing to gain weight but in a very specific place and in a very specific way. My stomach was very hard. It wasn’t squishy like you would normally expect your stomach to be.

Vanessa:
Bev’s experience was also confusing for her.

Bev:
My first symptoms that brought me to my primary care physician started with stomach pressure, soreness in the abs, kind of like doing 100 sit ups the day before. At the same time, I had started a cleaning business, so I was doing a lot of extra mopping and sweeping and I thought maybe that was the reason for the soreness. But the soreness, it just didn’t go away. So then some other symptoms that I had, I began to bloat, finding myself really looking for larger tops to cover the bloatiness. Then I don’t know, I just knew something wasn’t right at that time. There was a point where really I couldn’t eat because I would feel full, even just one or two bites. And I love to eat, so I knew right then that something was not right.

Rachel:
I don’t feel like eating sometimes when I get stressed and I’m always struggling with my weight, so I don’t know that I’d even think of something like ovarian cancer.

Vanessa:
That’s definitely part of the problem. Dr. Gogoi can tell us a little bit more about symptoms.

Dr. Gogoi:
Unfortunately, most women do not have symptoms of ovarian cancer until the cancer has spread to other parts of the abdomen. So symptoms would include bloating, feeling full, abdominal distention. Some women have other GI symptoms like diarrhea or constipation. Pain is generally uncommon with ovarian cancer, and ovarian cancer is then generally detected either by imaging, for example an ultrasound or a CAT scan, and confirmed with either a biopsy or surgery.

Rachel:
So I wouldn’t go straight to a gynecologic oncologist, though, if I’m just wondering why I can’t lose weight or why I’m sore all the time, right?

Vanessa:
No, you’d go to your regular doctor first, that’s true. Those symptoms don’t always mean you have cancer, so your doctor would probably have to rule out some other things. Eventually, he or she would probably start to worry and either draw blood for indicators or do a scan to see if there’s a mass. Based on those results, as soon as ovarian cancer is suspected, a referral to a gynecological oncologist should be made as soon as possible.

Rachel:
Yeah, that makes sense. It seems like the general symptoms could take a while to figure out.

Vanessa:
Dr. Gogoi and Dr. Uppal agree.

Dr. Gogoi:
Because symptoms of ovarian cancer can often be mistaken for other causes, about three out of four women will present with advanced disease. That is, that’s disease outside of the ovary.

Dr. Uppal:
We see two different kinds of presentations of ovarian cancer patients who end up in our office. One where patient has a mass on the ovary, or both the ovaries, but there’s no other area where there’s any abnormality on a scan. They may or may not have elevated tumor markers, especially CA 125, which is done in this setting. And then the second group of patients we see are the ones where they may or may not have the ovarian mass, but they also have disease which is in their upper abdomen. In these patients, it is possible that somebody actually attempted a biopsy and they may or may not have elevated CA 125 again. So those are the two typical scenarios we see where patients are referred to us.

Rachel:
I’ve heard that genetics can play a big role in cancer. Did Bev and Emma look into that?

Vanessa:
Yes. Emma found that connecting the cause of her cancer to genetics really helped her make sense of the diagnosis.

Emma:
I kind of tend to look at my cancer as something that probably has a genetic component. And at least for me, I kind of like the idea that it was genetic as opposed to something environmental or maybe something somehow totally random. I think it’s either option A or B for the most part with cancer. But I like the idea that there’s literally nothing I could have done. I think it depends a lot on the survivor, or even just talking to other people about this, it’s kind of interesting to see how people react to that. I think that’s something that you have kind of a strong gut instinct either way how you would feel about it being genetic. But I like the idea that … And actually, to my parents, I think that they specifically really don’t like that I assume it’s genetic, because they feel like they’re at fault for it, and I don’t look at it that way at all. I mean, no one knows what you’re carrying around in terms of genetic code.

Rachel:
I can see both sides of that, Emma’s and her parents’. Aside from the psychological aspect, is it really important to know, though?

Vanessa:
Dr. Uppal has some thoughts on that one.

Dr. Uppal:
Seeing a genetic counselor for ovarian cancer patients is very important. In the last few years, the recommendations have evolved very rapidly. I think it was before 2014 or 2105 … I don’t remember exactly the year, but we used to assess the risk based on how many family members in a particular family have developed ovarian cancer, or how many have developed breast cancer. But people quickly realized that in ovarian cancer, the risk was so high … anywhere from 1/3 to 1/5 of the ovarian cancer patients actually developed cancer as a result of a genetic mutation. So as a result, the guidelines have changed now. Every ovarian cancer patient with high grade disease is now a candidate for genetic counseling. And more often than not, they end up undergoing testing.

Dr. Uppal:
We always tell our patients that if they are diagnosed with an ovarian cancer as a result of one of these genetic mutations, then it sort of opens the door for what we call as cascade testing, meaning the rest of the family members should also be tested. This is a huge subject, and an important one because people are often very worried and many patients just don’t want to know their risk if they are going to develop cancer. And I can certainly understand that. I don’t want to know I’m going to be developing cancer in, say, five years, 10 years, 15 years, whatever it is. But in ovarian cancer, it is very important that they do that because even though there’s a sense of helplessness around this, that, “I didn’t get a BRCA gene, or any other gene because of any fault of my own.”

Dr. Uppal:
But in ovarian cancer, there are things we can do to reduce that risk. For example, if a patient gets diagnosed with BRCA-related ovarian cancer and then, say for example, her daughter gets tested and she’s BRCA positive and she’s in her 20s or 30s, she could decide to have children … complete childbearing, if that’s something she’s interested in. But at a certain age, depending on the type of mutation, we can remove the tubes and ovaries and reduce the risk of her developing ovarian cancer by 95%.

Rachel:
95 is a huge percent.

Vanessa:
And that number is even more important because the symptoms of ovarian cancer are so vague, so it’s usually diagnosed at a stage three or four when it’s much harder to treat.

Rachel:
Stage three or four?

Vanessa:
Ovarian cancer can be diagnosed at four different stages.

Rachel:
What are the stages based on?

Vanessa:
Dr. Gogoi can tell us a bit more about them.

Dr. Gogoi:
Staging is a way that we evaluate how advanced a cancer is. Ovarian cancer is generally staged by surgery from one to four, with one being limited to the ovary and stage four being the most advanced. Sometimes, physicians may not be able to provide an exact stage of cancer, especially if chemotherapy is given before surgery.

Rachel:
What kind of tests do they do to figure out that it’s ovarian cancer and what stage it is?

Vanessa:
Bev can tell you a bit about her experience as a patient.

Bev:
The scans and tests that I remember taking … the first ones actually was from a local walk-in clinic. When I had all the symptoms and I decided to go to the walk-in clinic, they actually sent me to the local hospital for X-rays and blood work. The next day, I received a call from the clinic stating that the X-rays didn’t show any blockage at all. They basically told me I had gas, so I didn’t feel right about that. I knew that couldn’t be right because I’d never had any issues releasing any type of gas. So then I knew something was going on and I went to my primary care physician. She did send me to get some … I did get examined for other things. She did think that I had some fibroids, so she sent me to get some ultrasounds done, actually. And the ultrasound came back and basically said that I had an enlarged kidney. My left kidney was enlarged, so she was concerned about that.

Bev:
She sent me to a kidney specialist and, again, with more ultrasounds, nothing. The doctor said it was nothing with my kidneys. So then she referred me to a gynecologist who did his regular exams. He at that point did tell me, though, that everything looked good with my female organs and that the reason for my boating actually was due to having ascites.

Rachel:
What’s ascites?

Vanessa:
It’s abnormal fluid buildup in the abdomen.

Rachel:
Okay. So it sounds like ultrasounds are important.

Vanessa:
Yeah, and Emma also had some imaging done.

Emma:
When I sat down with the doctor and she had me lay down on the bed in the exam room … or the chair. Bed? Chair? Bed? She had me lay down on the chair in the exam room and she felt my stomach kind of right where I was describing it feeling hard and it being unusual for me, and right away she affirmed for me that it was unusual and I was really pleased and relieved that she was taking it seriously. And actually, to her, it was so serious and urgent that she ordered a CT scan to be done that night at the adjoining hospital. And so of course, that was kind of the first clue that it was maybe even more serious than I realized, since I was thinking that it might have been something that … I guess in my mind, I was envisioning if something’s going on, maybe it’s something I can take a pill for. I guess that’s what everyone hopes for, it’s not something that’s going to need a very serious intervention.

Emma:
So I had a CT scan right away that evening. That was a Friday afternoon and evening that I had the doctor’s appointment, and then Monday morning, I got a phone call from the women’s hospital at U of M and they were calling to ask me if I was available the next morning to schedule a consultation with the surgeon. That was definitely a total … That was a total surprise and that was kind of … Every step of the way, everything was just … it was just another major surprise one at a time. Things were kind of leveling up in a way that I was totally not anticipating. I actually did have some time the next day to go in and see the surgeon, and I went with my mom and I met her and she was explaining that it was something that was going to have to be removed surgically and she was explaining what she thought everything was. Part of that exam was a pelvic ultrasound to take a closer look in the exam room, and she pointed out what she was seeing. That was everything that happened test-wise prior to my surgery.

Vanessa:
Doctors who suspect patients might have ovarian cancer could also do blood tests. There’s a specific test called a CA 125. If the CA 125 levels are going up, the cancer cells are growing, and if they’re going down, the cancer cells are being killed. This can help gynecologic oncologists figure out whether or not treatments are working.

Rachel:
Got it.

Vanessa:
So usually, when a patient goes in for an appointment with a gynecologic oncologist, they might have information like ascites, elevated CA 125, and carcinomatosis, which basically means that the cancer is visible on their scans. Dr. Gogoi can share what happens next in most cases.

Dr. Gogoi:
In a healthy patient with ascites, carcinomatosis, and an elevated CA 125, this is a patient that should seek the opinion of a GYN oncologists. Data suggests that patients have better outcomes when they’re cared for by physicians who specialize in GYN cancers. Depending on a number of factors, including the patient’s medical condition, amount and location of the disease, the physician will decide whether surgery first or chemotherapy first is a better option. Ultimately, the goal of surgery is to remove all disease, and this may be better achieved if chemotherapy is given first, shrinking the tumors, followed by surgery, or surgery first, followed by chemotherapy. The doctor may also recommend additional testing, including a colonoscopy and/or a biopsy of the tumor or of the fluid to get a diagnosis of the cancer.

Rachel:
Interesting. I guess I didn’t realize that sometimes surgery happens first and sometimes chemotherapy happens first. Can you tell me more about how that’s decided?

Vanessa:
Dr. Gogoi can.

Dr. Gogoi:
The decision really is made based on a number of factors, including the overall health of the patient and careful evaluation of the imaging, like a CAT scan or ultrasound, to decide the likelihood of being able to get the cancer out completely.

Rachel:
So neoadjuvant is what they call it when the chemo comes first.

Vanessa:
Right. And we’ll go into more detail about chemotherapy and surgery in our treatment options episode.

Rachel:
Sorry. I know this is silly, but I feel like there are a lot of big words.

Vanessa:
No, no. There are. You’re right. It can be a lot to take in, and it can be really hard to understand all the information. Bev remembers it being a little overwhelming.

Bev:
Some of the struggles that I encountered in learning about the cancer … going online was actually the biggest struggle because, again, there’s so much information out there and it’s just overwhelming, actually. By reading some of the stuff online, I knew I was going to die the next day. That’s exactly how I felt. And then just going back to the doctor, every time that I did go back to the doctor, I got more information. So just knowing, I think, the right questions to ask to get the answers that you’re actually looking for, that’s a really big thing, I think, is one of the biggest things. Even though you don’t know what to ask, you just have to ask questions because that’s how you’re going to get your answers. And having a lot of faith in your doctor really helps, too, because your doctor knows exactly what’s going on with you.

Rachel:
I feel like it takes a lot of patience.

Vanessa:
Emma completely agrees.

Emma:
I think emotions, they were something that were constantly changing and I had to learn very quickly to be patient with myself and be accepting of what was happening and the different emotions that I was feeling day to day. I know right after the surgery, I think I definitely had a very delayed emotional reaction where I was definitely shocked, but it was like I was hearing that about somebody else, in a sense. And so I remember kind of in a weird way not thinking much at all about it, because I think it very much felt like it wasn’t happening to me.

Emma:
Then as I started learning about the treatment that I was going to have to undergo and preparing for that, then I was starting to feel things in little bits of … I don’t know what the phrase would be. I guess kind of in waves, but aggressive waves, these emotions that kind of come on suddenly where … I mean, there was certainly a fair amount of anger at thinking about … Well, anger and unfairness, just like a deep sense of, like, “This isn’t fair for me to be going through this at 26. This is something that happens to older people.” Or at least in the back of your mind, you figure, “That’ll happen 50 years down the road, maybe. Hopefully not,” and suddenly the reality for me.

Emma:
I mean, definitely just a lot of sadness at times, too, where it’s just … I mean, you feel terrible physically going through chemo and recovering from surgery. It’s pretty easy to just feel sad and down and sorry for yourself as you’re dealing with that. I mean, especially for me to go from I was doing yoga and running all the time and able to be really active to being kind of locked up in my room all day. I mean, I definitely felt isolated because that was a very sudden shift for me.

Vanessa:
And Bev felt pretty overwhelmed, too.

Bev:
The emotions that I experienced when learning about my diagnosis … It was very difficult. Well, it was definitely an emotional rollercoaster. Luckily, I have a lot of family and friends to help me through some of my hard times. It’s pretty tough. But you have to stay positive. It’s something that you definitely have to have a lot of faith and stay positive. I don’t know, I still try to smile through all of it, but it is really tough. I’ve always been an emotional person to begin with.

Rachel:
Yeah. I feel like it would be really hard to not feel very alone.

Vanessa:
I know. It’s a really vulnerable time, which is why it’s so important that patients develop good relationship with their gynecologic oncologists. Emma really connected with hers.

Emma:
It’s definitely very important, and I think I was very fortunate that it kind of from the beginning just naturally felt like we were working together, that he was doing hard work behind the scenes and monitoring me and making sure that things were going as expected and that I was doing what I had to do as a patient, which was for the most part just surviving, but being diligent about following any instructions that were asked of me. And yeah, I feel pretty fortunate that, at least for me, it felt like we were working together. And if it hadn’t felt like that, I mean, that would have been a huge issue to me because I feel like it’s very important. Part of the idea of working together to me is trust, and I feel like if the relationship felt one sided or was more weighed on the doctor side of things, that would have been difficult for me.

Vanessa:
And Dr. Gogoi agrees that the relationship is very important.

Dr. Gogoi:
It is extremely important that the patients feel comfortable in their relationship with their GYN oncologist. They should be comfortable asking questions, all of their questions should be answered in an appropriate format, and they should be able to interact and meet the members of their extended GYN oncology care team.

Rachel:
So there’s a whole care team?

Vanessa:
There is. Dr. Uppal can tell us a bit about the behind the scenes.

Dr. Uppal:
The team includes the people you will see when you come to our clinic and if you undergo surgery when you’re admitted to the hospital, and then there are people you don’t see. There’s a huge team which works behind the scenes to get things in order, for example, our surgery schedulers or the OR staff which you don’t see. But I’ll mainly talk about the people you will see when you come to the clinic. Residents and fellows. These are physicians who are in training and they are at different level of their training, so they’ll be either seeing you in the clinic, but they’ll also participate in the operating room and also take care of you after you undergo surgery.

Dr. Uppal:
We also have a group of providers we refer to as advanced practice providers, and basically the physician assistants and nurse practitioners fall under this category. In the clinic, you will also see clinic nurses, which specifically are working as a part of the GYN oncology team. But then you’ll also meet some other nurses when you’re getting your chemotherapy, as the infusion nurses. If you’re admitted in the hospital, then you’ll see nurses we refer to as inpatient nurses. They are taking care of you after your surgery and helping you recover.

Dr. Uppal:
Many practices also have a pharmacist on the team, and the pharmacists are really an important part of our team. They help make sure that you’re getting the right doses of the chemotherapy. In our practice, for example, our pharmacist also talks about the side effects of chemotherapy and is integrated in our team in teaching patients about the side effects and what to expect during chemotherapy.

Dr. Uppal:
This is the main structure of the clinic, but then a very important piece of the clinic is the people you meet when you come to the clinic. For example, the schedulers and clinic coordinators. They make sure that your appointments are in place and your CT scans are ordered, and they play a huge role in management of patients with cancer.

Rachel:
So many people.

Vanessa:
It’s helpful, though. It means that there are resources available if a patient needs help, like Emma sometimes did.

Emma:
I mean, it was pretty clear that my oncologist was kind of the head of the team and the one ultimately making a lot of the big decisions from their perspective of having a lot of expertise and looking at my whole health history and all of that. I also had a physician’s assistant, and I did notice over time that I saw the oncologist less and the physician’s assistant more, and that was a weird but kind of a happy transition, because I felt like, “Okay, if I don’t need to see the oncologist, that must be a good thing.” And at least in the case of my cancer center, there were other people that were available to me as a resource in different ways, especially during my treatment.

Emma:
There was a phone number I could call to talk to residents that were on staff or nurses that were on call any time of day if I was experiencing some kind of funky symptom and I was really worried, and that was really nice just because there were a couple of times when I was in treatment where there were things that came up where I just wanted to quickly call someone and know for sure and not have to wait until the next day if something that was happening to me was serious or not. Relatively speaking, I was really happy with the access that I had to my doctors, and if I had questions about what was happening to me physically, I felt like I could always get an answer really quickly and satisfactorily.

Emma:
But the thing that was a struggle for me that I was having a hard time articulating at the time was just mentally and emotionally adjusting to having cancer, and I wish that there had been someone that … in the sense that my oncologist was the head of my physical care, it would have been nice to have someone that was the head of my emotional and mental health. I understand now, having talked to other survivors, that that person is a patient navigator, that they guide you to resources that don’t necessarily maybe in some cases have to do with your physical health, but they kind of cover the whole person. That’s something that was a very big thing for me that I think I could have benefited a lot from that and that in retrospect I see that was missing.

Rachel:
That patient navigator sounds like a great idea.

Vanessa:
Agreed. But not all hospitals have that resource, so it’s important for patients to seek out the resources they need as they work through their diagnosis. Dr. Gogoi has some warnings for us, though.

Dr. Gogoi:
The internet is filled with sites that may not always offer accurate information. Use of reliable sites, such as sites from the Society for Gynecologic Oncology or Foundation for Women’s Cancer are resources that are helpful as patients navigate their own care. We recommend strongly that all care should be initially with a GYN oncologist, that is a physician that is specifically trained in the management and treatment in GYN cancers.

Rachel:
That’s kind of scary. It’s hard to know which resources are helpful and accurate.

Vanessa:
Yeah. In the show notes for the episode, like I mentioned before, we’ll include the links that Dr. Gogoi mentioned and some other resources we know of. But patients can also reach out to their doctor’s office to ask about other options. The people who work with cancer every day sometimes have bits of knowledge about things like handling stress, working through diet issues, or hair loss and wigs that can be really helpful. Some of our future podcast episodes will hopefully touch on that, too. Emma’s gynecologic oncologist, for example, had a fantastic suggestion that really helped her with her self-care.

Emma:
As it pertains to travel, I got an email from my oncologist in 2018, so a couple years after I was out of chemo and physically feeling pretty great. And it was my oncologist was asking if I would be interested in participating in a trip that was specific to young adult cancer survivors. It’s an organization that leads different outdoor experiences for young adults that have been diagnosed with cancers in between 18 and 40, and the idea is that you get to experience a really incredible natural environment, but then on top of that, you’re challenging yourself physically. So in my case, it was a backpacking trip, to challenging yourself with the backpacking, but at the same time you’re doing it with other cancer survivors. And so you’re kind of getting to know them and …

Emma:
The trip that I went on was a backpacking trip in Wyoming, and even though the trips are open to both men and women, male or female survivors of a specific age, obviously, it ended up being a group of all women and every single one of us had either been diagnosed with ovarian or breast cancer specifically. It was just really cool that we were a group that, I think, in particular just really identified with each other. And to be in a place where you don’t have to deal with … you’re dealing with nature and the unpredictability of bugs and weather and things like that, but you’re not having to deal with the outside noise of life with other people and stuff like that. So it was really cool to spend a lot of really intense in a good way time with each other.

Rachel:
Well, that’s cool.

Vanessa:
Definitely. Okay, well, that was probably enough information for one topic. Our next episode will focus on treatment options, and we’ll hear from Bev and Emma again. But before we go, let’s listen to some advice from our guests to patients and loved ones going through this experience. Here’s Dr. Uppal.

Dr. Uppal:
Most of our patients who are diagnosed with ovarian cancer are undergoing investigations when we are highly suspicious that the pelvic mass is ovarian cancer and we are thinking about doing a surgery. I always tell them that this is a cancer which even when diagnosed at an advanced stage, like stage three … which is the most common stage where ovarian cancer patients are diagnosed … it’s very treatable. 85% of our patients with advanced cancer and cancer cells in the abdominal cavity, and even those in a stage four, respond to chemotherapy. In other words, only 15% of the patients are the ones where chemotherapy doesn’t do anything. But 85% is a pretty good number.

Dr. Uppal:
Although in the last few years, the survival has increased, it hasn’t increased as much as we would like to see in ovarian cancer. But I always tell my patients that in the last six years I’ve been in practice, the number of drugs have increased tremendously, which are available for us to treat ovarian cancer. So if we are very aggressive in treating them now, even if their cancer were to come back, it is likely that as time goes by, we’ll have better cancer treatments available at that time and we’ll be able to eradicate the cancer at that time.

Dr. Uppal:
So stay hopeful. Reach out to your family members who are going to be your primary support in facing this disease. You need an army of people helping you. This is a time when you just accept help as much as you can in any shape or form you’re comfortable with. It’s a time to be focused on yourself. Dissociate yourself from thinking about how people will cope at my job, how people will cope in various roles you play, especially in the beginning when you’re getting chemotherapy and surgery. You have to look inwards and become a little bit more self-centered because you have to put yourself at the center of it and take care of yourself. If you don’t do that, it becomes very difficult to undergo the treatments and recover from the surgery.

Rachel:
Stay hopeful, accept help, and focus on you. I like that.

Vanessa:
Me too. And here are Emma and Bev.

Emma:
I think that the biggest thing as just an overarching piece of advice is to try as much as possible truly to be patient with yourself and to be … I don’t know if open to change is the right word, but I think mostly it would be just to be patient with yourself, especially coming out of surgery or chemo or radiation or any of that stuff, that that period of time, it’s very difficult physically and mentally and I think it’s important that you give yourself grace throughout that. And then after that, I think just, I mean, really giving yourself the time to process what has happened to you with the diagnosis and everything that you’ve been through with treatment and just, I don’t know, really giving yourself time to recover from that. And again, being patient with yourself, because I think for me, that was something that I wanted to rush through that and it ended up being something that at least I couldn’t rush through. So I’d like to, I guess, caution other women that it’ll probably be more time intensive than you like, but it’s worth it to really take the time for yourself.

Bev:
My advice to women being diagnosed with ovarian cancer … Being positive is very big. You really do have to stay positive. And reaching out to anybody that you know that has gone through it that can help guide you through it is very helpful. Stay off the internet, listen to your doctor. The internet is going to tell you everything you don’t want to hear or read. The doctor’s going to tell you what you need to know. And keep smiling.

Rachel:
So grace, patience, time, and smiles.

Vanessa:
Exactly. So anyone listening, we hope this helps you feel like you’re not alone, and there are resources available to you. As a reminder, there is a patient navigation line you can call. That number is 1-844-446-8727 if you need help finding a gynecological oncologist. And don’t forget to check out the show notes. Thank you again for joining us.

Vanessa:
The information contained herein is information only. Users are solely responsible for all medical care and services delivered to their patients and all decisions related to such medical care and services. Neither MOQC or the regions of the University of Michigan shall be responsible for any delivery of medical care or other services to any patient or any decisions, acts, or omissions of persons in connection with the delivery of medical care or other services to any patient.

Show resources:

Michigan Dept. of Health and Human Services (MDHHS) Ovarian Cancer Patient Navigation Line:
1-844-446-8727
https://www.michigan.gov/mdhhs/

Society of Gynecologic Oncology: Ovarian Cancer
https://www.sgo.org/patient-resources/ovarian-cancer/

Foundation for Women’s Cancer: Ovarian Cancer
https://www.foundationforwomenscancer.org/gynecologic-cancers/cancer-types/ovarian/

NCCN Patient Guidelines: Epithelial Ovarian Cancer
https://www.nccn.org/patients/guidelines/content/PDF/ovarian-patient.pdf

American Cancer Society: Ovarian Cancer
https://www.cancer.org/cancer/ovarian-cancer.html

Center for Disease Control and Prevention: Ovarian Cancer
https://www.cdc.gov/cancer/ovarian/index.htm

Clinical Trials
https://clinicaltrials.gov/

Facing Our Risk of Cancer Empowered (FORCE)
https://www.facingourrisk.org/

Michigan Oncology Quality Consortium
https://moqc.org/

Michigan Ovarian Cancer Alliance (MIOCA)
https://www.mioca.org/

National Ovarian Cancer Coalition (NOCC)
http://ovarian.org/

DISCLAIMER
The information contained herein is information only.  Users are solely responsible for all medical care and services delivered to their patients and all decisions related to such medical care and services.  Neither MOQC or the Regents of the University of Michigan shall be responsible for any delivery of medical care or other services to any patient, or any decisions, acts or omissions of persons in connection with the delivery of medical care or other services to any patient. These materials were made possible by a generous grant from the Michigan Department of Health and Human Services.