Episode 14: Oncofertility: Bridging the Gap Between Oncology and Reproductive Endocrinology

Oncofertility Episode_September 2021
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ginger: Well, good day. And welcome to this month’s podcast brought to you by the Livestrong Cancer Institutes at The University of Texas at Austin’s Dell Medical School. Today, we’re so fortunate to be profiling the specialty of oncofertility. We’re joined today by advanced practice nurse, Sarah Felderhoff and Adolescent and Young Adult member Anmol Desai. Thank you for [00:04:00] both taking the time out today to educate our learners and our listeners on oncofertility.
sarah & Anmol: Thanks for having us.
ginger: Thank you, Sarah. I want to start with you. Can you tell us about yourself? What is your background, your experience?
sarah: Absolutely. So my background, you know, I got my bachelor’s in nursing and then I got my master’s in nursing. So I’m currently a nurse practitioner. I have a background in primary care as well as women’s health. And then, more specifically to the . Oncology. I have a background in pediatric oncology, and what kind of led me to oncofertility is just while working with the pediatric oncology population.
You know, I just, and also with patients who are post-chemo post-treatment in their survivorship I just saw a big need in our community for oncofertility. And so that’s kind of what led me here to this position.
ginger: So can you unpack oncofertility for us. And what is the difference [00:05:00] between onco fertility and fertility preservation?
sarah: So fertility preservation is kind of a broad term that we use. And it’s, you know, it’s . Any procedure or treatment that we do before a medical treatment that could possibly cause infertility. Just to kind of give some examples, like radiation chemotherapy, certain surgeries fertility preservation isn’t necessarily.
Specific to cancer patients as obviously there’s other conditions that require treatments and procedures that can affect a patient’s future fertility. Oncofertility specifically kind of refers to the field where we bridge the gap between oncology and reproductive endocrinology. And the purpose of it is to kind of maximize our, um, the reproductive potential for cancer patients and survivors.
So oncofertility is very specific to our oncology population. .
ginger: So when you say oncology population. does that mean it’s a certain age group, certain demographics.
sarah: So, our goal is to open it up to anybody. [00:06:00] Any age, any demographic, I truly feel every patient should be offered oncofertility as they’re going through cancer treatment and prior to cancer treatment.
ginger: For educational learners out there, I just wanted to talk about what led you here through your educational background? Was it stem? Was it, a mentor? Elaborate on that.
sarah: Working with a pediatric oncology population I would see patients come in that had already started chemo and just weren’t offered fertility preservation and there just wasn’t a good substantial program in our area that was addressing these needs.
And now, as far as my educational background we had talked about how I’m a nurse practitioner and I do have a background in oncology and more specifically starting this position, I did do a certification course and it is available for nurses or any medical professional who’s interested.
And it’s a certification course that’s offered by ASRM. And it’s a certification course in reproductive [00:07:00] endocrinology and infertility. The other thing I did was. I studied under Dr. Mack who is our reproductive endocrinologist here at UTHA basically did training with her on ultrasound on treatment protocols the other things that I think are, have been super helpful to my field is attending the oncofertility conferences. You learn the most innovative practices, what people are doing at their facility, how they’re setting up their programs. Very helpful to talk to other people. And, you do a lot of educational sessions. The other thing that’s really helpful is the oncofertilityconsortium , a huge website with a ton of resources, but they also have several textbooks that they’ve released. That are specifically about oncofertility. They have a pediatric one. And then they also have an adult textbook and I’ve, I’ve read those from cover to cover and I’ve found those very helpful as well.
ginger: Can you tell us a little bit [00:08:00] about the practitioner to patient relationship and that discussion and I’d even like to bring on Anmol, and can you tell me a little bit about the discussions that you had with her?
sarah: Sure. So Anmol, I can start and then let you chime in when you want to. So I ideally the start of the meeting, it’s always ideal for me to see a patient before they start treatment. And Anmol can tell you this because once we start treatment, our options become a little bit more limited.
And Specifically the chemotherapy that can cause some of the infertility issues in the future. So that’s usually why I like to have this conversation before patients start treatment. So usually in the next day or two, we have a more detailed conversation. And that’s where I really focus on the fruit. The oncofertility or the fertility preservation counseling. And I go into, current options.
I also and see patients in survivorship and what that is patients that have completed treatment and are now on the other end of [00:09:00] things. And a lot of these patients weren’t able to do fertility preservation. I also see patients after treatment to help them start to think about fertility and future family planning. I met Anmol, and we, talked about things we can do after her treatment.
And I’ll let her kind of tell you a little bit more.
anmol: So I was. Diagnosed July, 2019. I had just started my first job out of grad school. I’d only been working for actually less than five months at that point. And so I, for me, it was. An interesting time to say the least to have to go through figuring out what do I do about my job? How do I stay on my health insurance? I was lucky enough to be working with, for the UT system at the health sciences center in San Antonio.
And so it’s a really good [00:10:00] health insurance plan. And. A really great social worker at Seton, Main where I got my chemotherapy. And so she is the one who was able to help me go through that, navigate that process and figure out what forms I need to get signed. After chemotherapy, I had about six to eight weeks before I had my stem cell transplant. And prior to my stem cell transplant for about three days, I had total body radiation six rounds. And so in that in-between period I had to figure out okay, am I gonna go back to work?
Now that my three months of medical leave has gone up and I was very lucky to have a supportive boss. And I actually started back work on as part-time, just last year, September. I transitioned to 80% full time. [00:11:00] then just two days ago, I started at UT Dell I transitioned to a hundred percent full time. And so,
yeah. you.
ginger: Yeah. Well, tell us about that. Leaving us in the dark. Tell us about that.
anmol: Working on the Gilliad, uh, hepatitis C project that’s in people experiencing homelessness and people who inject drugs. I was working remotely way sooner than everyone else was with COVID.
For me, it was important to be able to stay at home so that I could continue going to my regular checkups with oncologists, transplant team, all the other doctors that there are. So it worked out well for me. I think that’s been a an adventure that I’ve been going through figuring out, how to balance a work life. And I think that’s another [00:12:00] thing that I’ve really, I think come to appreciate is that work life balance, and really trying to make sure I’m able to just keep working . And so like also maintaining an exercise routine and just some of these habits that I formed after treatment and being able to maintain those.
So that I can maintain my overall physical and mental health. I think something that not everyone even knows about that there are these lab works that you need to look at the lab numbers to determine, what my fertility is at and that should happen, a year after being on chemo for some patients versus just like right after I can see her and get started in the process when I was diagnosed with acute lymphoblastic leukemia, I had to start treatment right away. And so there was [00:13:00] that time crunch, but I had a very good oncologist who did bring up fertility in that initial diagnosis of maintenance, which was.
And I’m not sure if it’s because I already have somewhat of a science background or I was just more focused on treatment. But even when he said that I was kind of like, you know let’s go. And then even after my four rounds of chemotherapy, before I was scheduled to start radiation and my stem cell transplant
My doctors by both my oncologists and my stem cell transplant doctor, um, made a point to ask me about fertility again and readdress, you know, if I want it to do an egg retrieval or go through any process. Retrospectively, that could have been a good point where I could have seen Sarah because I had time in between the treatment and the [00:14:00] reason I said no at that time was because it would have pushed my stem cell transplant off by a few weeks.
I think maybe if I had seen Sarah at that point, had that conversation with her, what are my options? And, you know, being able to check my lab work and see what is that, you know, for me, I’m a very, uh, data person.
So I, you know, see what are the chances? What are the statistics I’d be able to have a successful egg retrieval at that point, or if it would be worth it for me to just go to treatment and then come back to her afterwards.
ginger: And it, it sounds like a very in-depth, conversation. I mean, we’re talking about, you know, something that’s in the future, but not as far off, perhaps as we may have thought, what type of support did you receive during that time? From what I understand as a young person, you would have that discussion with your family as well. Is that correct?
anmol: I’m in my mid [00:15:00] twenties. So I was lucky enough to have both my parents with me at that, like, it’s not the initial diagnosis appointment, but the appointment right after that, where we, again, we’re talking about fertility. And so I had their support and, I turned to them and said, well, there’s adoption. There’s surrogacy. There are other options that at that point I think we were all kind of on the same page. That my treatment was my priority at the time.
ginger: So do you have support outside of your family . who is your tribe?
anmol: I love that word tribe
sarah: I do too, actually
ginger: You know, your sort of village. We have that village mentality in our department that with our director, Gail Eckhardt, and that’s been how she wants to show her leadership is to have a village mentality because we all need one another essentially.
But also you have been through. Such an interesting journey. So [00:16:00] you also have so much knowledge to offer others as well. So who’s your support?
Who’s your resources. And then who are you supporting
anmol: that’s a great question. So I was lucky enough to get treatment in Austin and I’m from Austin. So I had quite a bit. My high school and college friends already here. And so they’ve definitely been a great part of my support system aside from my family. And then I would definitely say that the AYA board has been a great support system for me, as I transitioned, especially from treatment into survivorship, just to meet other people.
Who’ve also gone through similar experiences and. You know, there are points, uh, like things that I wouldn’t have thought about when I was initially diagnosed, or even when I initially went through chemo and now some of those, um, like side [00:17:00] effects and like longer term side effects and things like that come up chemobrain short-term memory loss,
like things that it’s like you read about, but you really don’t think it’s real until you really experience it. And then through AYA, I’ve been able to have opportunities to do activities like this.
Talk on podcast, talk at a conference or do the Livestrong at School Program, talk to students about what it’s like to be a patient and an advocate. And so I think that’s been a really great way for me to also just process what I’ve been through because I think it’s taken me a lot longer for it to like actually hit me like, oh, okay.
This is what I lived here. And like now I’m seeing where. Life is different than before, I mostly feel like myself, but some of the identity aspects are different.
ginger: Like you said [00:18:00] before, your treatment is your priority. Your life is your priority and getting you healthy and well, um, was your priority at the time.
anmol: When I met with Sarah, you know, she was able to tell me about. Different opportunities in different new research that they’re working on as well that I had no idea about. And so I think, even just thinking about it at that point, even if I still decided not to go through with it, egg retrieval or anything at that point, just even having that information so that I could sit and think about it longer than, I have now but I don’t think I regret my decision. I think it would have been nice to maybe have met with Sarah before my stem cell transplant, rather than after.
ginger: And Sarah, that leads us into a interesting segue because when we had talked before you, alluded to the fact [00:19:00] that that’s sort of your mission. That seems to be your passion is to talk to individuals about oncofertility options at any age, in any stage, Um, so tell us a little bit about the future of
sarah: There’s lots of different options, specifically for females, before chemotherapy, there’s the option to do either an egg or an embryo preservation. We typically do embryo of if they have a partner.
There’s your option to do ovarian shielding, which is for patients that are getting some type of abdominal or pelvic radiation. We use special shields to that are placed over the ovaries during the radiation treatment there’s an option to do ovarian transposition, which is, if there, if there is radiation to the pelvis, we can actually move the ovaries higher in the abdomen and a way, and out of that radiation field to minimize damage.
There is an experimental option what we call ovarian suppression. So we give hormone treatments and they’re used to temporarily halt ovarian function with the thought that this [00:20:00] could provide some, ovarian protection during chemotherapy. One of the newest and most exciting things in our field is ovarian tissue freezing, which as of, pretty recently, it’s no longer considered experimental. And part or all of the ovary is actually removed and frozen for future use. This gives the option to patients l ike Anmol who have acute leukemias where when they’re diagnosed, they’re very sick and they need to be treated quickly. We’ll try and do the ovarian tissue preservation during the port placement. So it’s one time under anesthesia which is obviously safer for the patient. So that’s, an extremely exciting option because we can offer pre pubertal females of any age.
So it’s, it’s very exciting. As far as options for males, there’s sperm banking, that can be used for future use. There’s testicular sperm extraction. If a patient is unable to do sperm banking, there’s also radiation shielding for males as well. [00:21:00] And then there is testicular tissue freezing as well. Although for males that’s still considered experimental right now. So there’s still research being done in that area.
So those are the options that we kind of lay out on the table prior. To treatment and I also like to talk to patients about the fact that, if they decide to not do anything, there’s so many, there’s a lot of options after treatment as well. And Anmol touched on a few of those.
So, there’s, adoption, egg donation and sperm donation in the future as well. Embryo donation and, for someone like Anmol who didn’t have to have a surgery where she wouldn’t be able to carry a pregnancy our patients who can carry a pregnancy, that’s a great option because they can still, have the experience of being pregnant.
ginger: Tell us a little bit about any of the misconceptions of the process
sarah: yeah. I think the biggest specific misconceptions about it is, that it’s drastically going to alter the time to treatment for patients. I think that’s [00:22:00] one of the biggest concerns with a patient’s oncologist is that they’re ready to go once, their patient’s sick, they want them to start getting treatment.
And so they’re often concerned about that delay in treatment and, that’s where I have a conversation with, the patient patients, family, the physician, obviously sperm banking that takes one to two days. It’s pretty simple process. I talked about the ovarian and the testicular tissue preservation.
That can be done at the same time as the port. So no delay in care there. As far as the egg and embryo preservation, that takes about one to two weeks and a lot of times, unless, patients are very sick. That usually ends up being about two weeks.
So that gives us enough time to do at least one stem cycle and an egg retrieval. I think another misconception. Is that the age is a factor in that there’s some patients that are either too old or too young. And, I like to remind physicians or everyone that [00:23:00] it’s a case by case basis. And I still want to have a conversation with the patient or with the family, if it’s someone that’s young, because there is options.
And it, we don’t know that patient’s history. We don’t know where they’re at in their life. So I think it’s important to remember the age. Shouldn’t be a factor when we’re having these conversations.
ginger: I know that you discuss this with every patient that comes to the clinic, but does fertility concerns affect everyone that has cancer?
sarah: No, it does not. A lot of women will return to normal fertility after treatment. It all depends. The treatment protocol that was used what chemotheraphies were were used was radiation. And so that’s something that we go into depth about.
And I usually like to get, if it’s, if I’m seeing the patient before, I like to get the plan from their oncologists, like what chemo protocol will they be on? And specifically I like to know, are they going to get cyclophosphamide cause that’s one of the higher risk chemotherapies.
That [00:24:00] can you know, lead to infertility. But there is categories of risk as far as treatments and risks to fertility. And a lot of the drugs are new and it’s still unknown. I treat that as high risk because we don’t know. And it’s not something that, we want to sit there and gamble with someone’s fertility. And it might be good to have a conversation about doing an egg preservation, just in case it had an effect on your fertility in the future. Now, often when it does affect their fertility, there’s kind of several things that can happen.
Often women will have a return to fertility after treatment once they’ve completely finished treatment and then they’ll have a period or they’ll have an early menopause. You know 10 years or so earlier than your average woman. There’s also immediate menopause after completion of treatment. And then there’s some times just an effect on the fertility, but the patient doesn’t actually go into menopause.[00:25:00] For males, it can be the same thing. You can see a return to fertility immediately. It can take some time or it doesn’t return. Those are all things that we monitor after treatment as well.
Just to watch and see, and a lot of a lot of patients will have a year of, no cycle. And then all of a sudden they’ll get a cycle back, we’ll do an ultrasound and an AMH and everything looks fantastic. And I’m like, let’s do an egg retrieval now just in case. We have this option in our back pocket if you want to use it.
ginger: That’s helpful because we want to understand again, what the support levels are, what the process is. Can you tell me a little bit about the emotional, financial. That kind of support as well for patients
and
sarah: Um, here at UTHA we have several social workers that are fantastic. If I have patients that need counseling support Angela Luna is one of our oncology social workers. She’s fantastic. And she’s a great connection.
She helps connect [00:26:00] patients with counseling services. There is great support groups out there. There’s the AYA board. There’s tons of other support groups out there for patients. There is financial assistance programs for patients who are interested in fertility preservation. Livestrong, specifically has a great program, and I help my patients apply for this. I really try and help each patient. With navigating the financial piece of it. Some people do have insurance coverage for it and some people don’t. Hopefully in the future we’ll have coverage for everybody. That’s my dream.
ginger: I’d like to ask you Anmol. What are some of the misconceptions or ideologies your experience? What can you tell learners? Looking to perhaps be practitioners, how can you help them to have a better understanding of like a bedside manner, how to talk with patients how to inform them, how to support them. [00:27:00] I’d love for you to do that for us.
anmol: Yeah. So I think one of the big things that I think that I would like to see is in addition to egg retrieval, For oncologists to be able to also let patients know that there is also the tissue retrieval option that even though, it’s fairly new, but just so that, we’re aware that there’s even this other option, right?
Because Sarah said, that can be done when you’re getting your port placed. And so it doesn’t impact that treatment time. And I think that. I would say that’s for half the patients, a big thing is just impacting the treatment time. And then for the other half, I think it’s that the expense of preservation.[00:28:00]
And so I think having those resources on hand when you’re having that initial discussion about fertility, so that patients understand like how, uh, the support that’s there, the financial support. Yeah.
So even if I was told, Hey, why don’t you go see Sarah? Just so you can get some more information about it. Maybe I might have considered that just as a, you know, an informational visit so that I could get that information that might have been nice.
ginger: Sarah, I’d like to ask you piggybacking a little bit on that answer, that Anmol provided to us. What can you tell our listeners who are interested in being, an oncofertility, advanced practice provider? What kinds of support and conversations do they need to have with their patients?
sarah: I think [00:29:00] if there’s any listeners who are interested in, pursuing the oncofertility field or it’s something that they’re feel passionate about, I think a good place to start, would be to look into either those textbooks I was talking about or looking through the oncofertility consortium website just starting to touch on all the information that’s out there. A really beneficial experience would be shadowing a reproductive endocrinologist that does see oncofertility patients. So you understand based on a patient’s diagnosis, what kind of chemotherapies they’ll be getting having a, a solid oncology background is helpful as well. Each individual journey is about that patient and no patient is ever the same, having an open mind and open ears and listening to the patient and guiding them, not making the decision for them is very important.
ginger: Obviously, I don’t want to sound cliche, but you don’t want cancer to define you. So I would really love to [00:30:00] hear maybe three words of inspiration or your outlook as you move forward through your journey.
anmol: That’s definitely a thinker. Um, but like you said, actually, that was kind of the first thought I had in my head after my diagnosis was cancer is not going to become like who I am, but after the fact, and I think being a part of the AYA board, I would say, instead of saying cancer is me, I would say advocacy is a word use
sarah: I was going to say the same for you.
anmol: Yeah. Because I think that has been something. I’ve become more passionate about and, um, something that, you know, I hope to continue and it kind of pairs well with who I am career wise, which is epidemiologist and then [00:31:00] something that both treatment. And COVID kind of put a halt to is traveling. I mean, that’s really just exploring. That aspect of meeting new people and trying new things and taking that kind of leap of faith in activities that maybe I wouldn’t have before, or, you know, now it’s like, well, why not?
ginger: So I would say advocate a traveler adventurous.
anmol: Yep.
ginger: I like it. Sarah, how about you?
sarah: It is a hard question.
anmol: Yeah.
ginger: Yeah.
sarah: I would say traveler as well to me because I’ve definitely missed. That during COVID. I would say patient advocate for myself because, my main goal is to advocate for my patients and, help them in their [00:32:00] journey.
And then I would say let’s see. I would say that I would hope that I inspire other institutions that don’t really have an oncofertility program to get one up and running. And I’d like to, and my hope in the future is to help other programs get up and running because I think it’s a very important piece of every cancer program. And I think there’s still not enough out there.
ginger: Sarah I’m so glad that you’re part of the CaLM Clinic Team. And I’m glad that Anmol that you would be so willing and open to share your story and that you’re here at the Dell Medical School. We want to get individual stories out we want not only listeners to hear, but we want to educate as well. I just really appreciate your time and your candidness.
sarah: I agree. We’re extremely, extremely grateful that you came on.[00:33:00] Your story is very inspirational and we appreciate it.
anmol: no, thank you for inviting me. I hope I’m able to help some of the physicians just get a little bit of a peek into the patient perspective.
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