How to preserve your fertility during the COVID-19 pandemic
After a breast cancer diagnosis, people must act quickly if they wish to preserve their fertility. That choice is already challenging, and the pandemic has made it more complex. To prevent the spread of COVID-19, the disease caused by the novel coronavirus, most clinics have stopped offering fertility preservation services to people without cancer. But if you’re newly diagnosed and need to start treatment, you’ve got no time to lose.
Living Beyond Breast Cancer CEO Jean Sachs, MSS, MLSP, spoke with reproductive endocrinologist Terri Lynn Woodard, MD, about current guidelines for fertility preservation in people recently diagnosed with cancer. Dr. Woodard explores differences in access nationwide, whether fertility preservation is considered an elective procedure, and how to get help if you can’t find services during the pandemic. Watch, listen, or read the transcript below.
For more resources, check out LBBC’s new fertility decision-making tool and these organizations, which Dr. Woodard mentions in the video, to help you quickly access fertility preservation where you live:
- Alliance for Fertility Preservation
- American Society for Reproductive Medicine
- Oncofertility Consortium
Terri Lynn Woodard, MD
Dr. Woodard is an associate professor in the department of gynecologic oncology and reproductive medicine at the University of Texas MD Anderson Cancer Center and holds a joint appointment at Baylor College of Medicine and Texas Children’s Hospital. In 2012, she started the MD Anderson Oncofertility Program, a unique service that provides comprehensive fertility care to people before and after cancer treatment. Read more.
Jean A. Sachs, MSS, MLSP
Chief Executive Officer, Living Beyond Breast Cancer
Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.
Jean Sachs (00:00):
Hi, everyone, it's Jean Sachs. I'm the CEO of Living Beyond Breast Cancer.
First and foremost, I hope you're all doing well, staying safe and managing through these very uncertain times.
As Living Beyond Breast Cancer has been doing since the pandemic took hold in the United States in March, we've been working hard to talk to healthcare providers around the country so that you can get your questions answered and better understand how to manage the challenges that you're facing in getting access to treatment.
Today we're going to talk about oncofertility and I'm really pleased that Dr. Terry Lynn Woodard is here from MD Anderson Cancer Center in Houston. Hi, Dr. Woodard.
Terri Lynn Woodard (00:45):
Hi there. Thanks for having me.
Jean Sachs (00:47):
Of course, she is a reproductive endocrinologist and she really does specialize in helping those impacted by breast cancer, or any cancer, try to build a family. We know that when you're diagnosed with breast cancer it's an extremely stressful time, and for women who are young and either haven't started their family yet or aren't finished building their family but they feel a lot of urgency to start treatment, they have to make a decision before they start treatment. Do they want to try to do some fertility preservation with the hopes that down the line they will be able to build a family?
We already know that this is not an easy decision to make and often takes a lot of focus and having some clear conversations with your doctors and your partner or if you don't have a partner. Now it's got another layer because of COVID-19. Let's start with helping people understand what are the current guidelines for people diagnosed with breast cancer who want to undergo fertility preservation.
Terri Lynn Woodard (01:56):
Fortunately, the American Society for Reproductive Medicine, or AFRM, which is our professional organization, the stance has always been that women with breast cancer who are going to need chemotherapy or any type of treatment that can negatively impact their fertility, that these cases would be a go, that we would not take away their access to [fertility treatment].
Now that being said if you lived in a smaller city or only had one fertility clinic, some of those clinics did not have the resources to stay open during the beginning of the pandemic. Many women did express and talk about the fact that it was difficult to find care during this time.
AFRM released its latest guideline on May 11 saying that it is stressed that we should review more activities for everybody, not just patients with cancer, but they understand that in different parts of the nation that might look a bit different, there are still clinics that are shut down.
Jean Sachs (03:06):
Is it considered an elective procedure if you've been diagnosed with cancer?
Terri Lynn Woodard (03:12):
It is not considered an elective procedure for women who are diagnosed with cancer.
Jean Sachs (03:17):
Okay. I think that's really important because I have talked to some women who are caught in that in between where the doctors haven't been clear. [The women] have said very clearly this is not elective. This wasn't a choice, not that it really ever is elective.
It sounds, from what you're saying, that this should be an option. If someone is interested, what do they need to do if no one stepping up and saying this is what you need to do next?
Terri Lynn Woodard (03:48):
I think a lot of times people with cancer have to be very proactive and advocate for themselves throughout many parts of their therapy and treatments. I think this is something where the patient has to say, listen, this is something that's very important to me. I need a referral. I need some resources. And if those aren't given to her, there are other mechanisms by which they can get attached to different fertility clinics throughout the United States.
One is the Alliance for Fertility Preservation that has a website and people can contact them to help find out what clinics are open in their area. Similarly, ASRM has a website and so does the Oncofertility Consortium at Northwestern University, those will help people navigate and find clinics that are open.
As a referral center here at MD Anderson, I see quite a few patients from all over the nation and the world. A lot of times we will even go back to the START database, the Society for Assisted Reproductive Technology, put in someone's home zip code and start calling clinics to say, hey, we have a patient here that live in your area, are you open and will you consider taking this patient for fertility preservation now?
Jean Sachs (05:06):
I assume that many women would travel to your practice to have this done. Is that happening now?
Terri Lynn Woodard (05:16):
The practice of medicine overall has changed dramatically over the past couple months. There's been a tremendous shift towards the use of telemedicine, so a lot of our patients are being seen that way, especially when they're coming from states where we're requiring a 2-week quarantine. I think that here at MD Anderson, since pretty much our whole entire population is made up of cancer patients, we've been very cautious about who comes in our doors, so telemedicine has been fabulous. I think it's going to change how we work in the future even when this pandemic is over, but we're at least able counsel patients, explore their options, and help point them in the right direction if they decide to proceed with a fertility preservation procedure.
Jean Sachs (06:06):
Over the past 2 months, has your clinic had a reduced number of patients or have you been able to keep up?
Terri Lynn Woodard (06:12):
I think we're a little down in terms of people that actually choose to utilize fertility preservation. When the pandemic first started and we were shutting down or pulling back on some of our operations we limited our consults to those who were going to be needing care within a month or so or who had chemotherapy plans that were imminent, so I think that's part of it.
The other piece of it is that sometimes, when I would speak with women, especially early on in the pandemic, a lot of them felt overwhelmed. First, it's overwhelming to be diagnosed with cancer, then it's overwhelming to be told that your treatment can affect your fertility. And oh, by the way, you're at risk of dying from COVID-19. For some patients, I found that it was a little bit too much. Others understood some of the uncertainties surrounding this COVID-19 pandemic and moved forward, so we did send some people out for fertility preservation. We did some ovarian tissue freezing cases over the course of this so far. And it's interesting, I've been talking to my colleagues across the nation and everyone has a very different experience with this based on where they're located.
Jean Sachs (07:33):
We try to be really sensitive to that because, especially now as some of the country is more open than others, we want to be sensitive that wherever you live, you still need to find out what's happening in your community.
I'm wondering, since this has happened, some patients who would have had surgery first have been told they're going to have chemo first and if they were thinking of doing fertility preservation, that would be a problem. Have you had to manage some of those people who have to make a very, very quick decision because they were expecting one treatment plan?
Terri Lynn Woodard (08:08):
Yeah. That's something that comes up even without the COVID-19 era, we thought treatment was going to go one way and then things change. The fact is, we are able to accommodate that. With our protocols that we have now, we can complete egg and embryo freezing cycles quite quickly, typically within 2 weeks, so we do have that available to people still.
Jean Sachs (08:33):
Wow, that is very quick.
Terri Lynn Woodard (08:37):
Yeah, there is something called a random start protocol. It used to be that we thought we always had to start ovarian stimulations right when someone started a period. If a woman had just had her period and then saw a fertility specialist, she would be told that she'd have to wait a whole month before starting. But what we've learned over the course of time is that we can really start a stimulation cycle at any point in the menstrual cycle and still get similar outcomes and be able to meet the deadlines that are imposed on us by a chemotherapy start date. So it's really been,
Jean Sachs (09:12):
And is that across the country or just in the more sophisticated centers?
Terri Lynn Woodard (09:17):
I think more and more REI [reproductive endocrinologists] are getting familiar with it. Occasionally we'll have people that go to a specialist somewhere else and are told that they really want them to wait for their period, and we try to advocate for them because we see them and we say, “Hey their oncologist feels very strongly, maybe they have an inflammatory breast cancer or something that's a bit more advanced or urgent, this patient really cannot afford to wait.” And I found that most of those providers are willing to try the random start even if they weren't initially comfortable with it. But it is rapidly becoming standard of care for oncofertility patients.
Jean Sachs (09:55):
Okay. That's new information to me, random start. Remember everyone that this can be done more quickly, so ask those questions.
Another thing that is on everyone's mind right now is: Am I immune compromised? What's my real risk if I get COVID-19?
If you are treating a patient and they're going through the process to get ready for an IVF cycle, are they at any more risk or are you taking any special precautions?
Terri Lynn Woodard (10:25):
The first answer to that is really not satisfying: I don't think we know it. They're at risk, all of us are at risk for being infected, but we do know that there are certain populations that are at increased risk for more adverse outcomes and depth — people who are obese or have comorbidities such as diabetes or heart disease and things like that. Typically when we're working with reproductive aged breast cancer patients, they're overall quite healthy and we really don't see any reason to defer therapy for these patients.
Of course, in the new COVID-19 era, we're taking a lot of precautions. Everyone that comes in has their temperature taken, they're screened, we're wearing masks. In terms of our ultrasound scheduling templates, we're spacing them apart. Our waiting rooms are spaced apart, so we're limiting the number of people in the clinic each day. Those are the things that we're trying to do to make sure that we're reducing the risk of transmission from one person to another. But in itself, I would not hesitate to treat a young woman with breast cancer for fertility preservation and for any reason unless there were other comorbidities involved.
Jean Sachs (11:43):
That's helpful. And you started to answer my next question, which is when you go through fertility preservation you do need to have a lot of ultrasounds, a lot of blood. Some people come into the clinic even to get their shots if they're not comfortable. That's just a lot of exposure in this time where we're saying stay home. It’s good to know that extra precautions are being taken
Terri Lynn Woodard (12:08):
And some people are starting to bring testing into the mix. To date, we had not been doing that even for our fertility preservation patients because I don't know that a positive result would change what you need to do for that patient. I mean this is their one shot, their one opportunity, I think we have to go with it. But as we resume general IVF and overall there is talk of testing patients before they start stimulation as well as when they get ready to trigger and have their retrievals so we know what's going on.
Jean Sachs (12:43):
Yeah, and to protect all of you and the healthcare providers. We're all looking forward to more widespread testing.
The last question is, and this is a pre- and post-COVID and during COVID one, which is finances. We all know that cancer is expensive, for a number of reasons. We know that when you're getting treated for infertility, there are a lot of unexpected costs. Give people a sense of where are resources and is it less expensive for those in the cancer community versus people in the general population.
Terri Lynn Woodard (13:24):
People in the cancer community do have access to some programs that can help defray the cost of fertility treatments and fertility preservation. For example, Livestrong has a program where they contract with different REI practices and we agreed to pretty much do the cycle at cost. They also provide some of the medications that the patient would need. And often with that program, and the Walgreens Heart Beat program, we're able to get almost all of the medication for the patient for free. There's also the Cade Foundation that gives grants. Private clinics sometimes have special programs for their patients with cancer, so it's always important to ask if there's anything available. And again, that varies by region. There are some places, like in south Texas, that have their own programs for residents that live there.
The other thing I would really like to stress is that the whole idea of fertility preservation being a part of cancer care has influenced how we’re trying to advocate for insurance coverage, and in some states this has actually happened. The number of people who have coverage for fertility preservation is higher than it's ever been, but there are a lot of states, including here in Texas, where we had legislation that didn't quite go as far as we needed it to.
I also want to stress, I know the breast community is incredibly active, incredibly vocal, do what you can to speak up in your state and say, hey, this is a service that warrants coverage. There are multiple ways to do that through the Alliance for Fertility Preservation, Resolve, the American Society for Reproductive Medicine. The legislators need to hear from the patients.
Jean Sachs (15:14):
Thank you for saying that. I think it makes absolutely no sense that we don't do what we can to help someone get pregnant without putting them into bankruptcy. And particularly for those that are facing a cancer diagnosis.
I think you gave us some really good information. I think these were my key takeaways.
Fertility is happening, so if you are told that you can't do it and it's elective, that's not true.
There are ways to do a quicker cycle and you should ask about that.
There are a lot of resources both for financial support — Resolve provides also emotional support — and it sounds like MD Anderson will also help you and other places find a provider near you if there's not someone that you know about.
Terri Lynn Woodard (16:05):
That is correct.
Jean Sachs (16:06):
That's really hopeful because I think that it's such a stressful time. I know when women are newly diagnosed, they're making so many decisions and they're rearranging so many things in their lives and then they're like, oh wait, now I have to decide if I want to preserve my fertility and then how am I going to pay for it? And you have to look for financial resources. It's a lot. It's a lot. And it's very emotional too, to have to make decisions that really will impact your long-term future.
I'm so grateful for you and what you do and for all the healthcare professionals that are out there working with patients despite these challenging times. Do you want to add anything else before we conclude?
Terri Lynn Woodard (16:53):
No, I just want to let everybody know to hang in there, we're all in this together. We'll all get through this. It's a learning curve for all of us, but again, as a patient with cancer, cancer survivor, whatever, don't be afraid to advocate for yourself. It is so incredibly important.
And then once you've done that, feel free to advocate for your fellow patients and colleagues as well because that's where the power lies.
Jean Sachs (17:24):
That's great. Hopefully we'll have a lot of pandemic babies at the end of this.
Thank you so much for your time and for your work, and to everybody listening, remember that Living Beyond Breast Cancer is posting new content every week. Make sure you visit our website LBBC.ORG, we have a brand new section of our website that is on oncofertility. So that's ONCOFERTILITY.LBBC.ORG. It's chock full of information available any time. We also have closed Facebook pages for young women. Many have gone through oncofertility and they are always happy to share their story. If you want to be invited, just email us, go onto our website, and we will invite you into those communities. Thank you for listening. Stay safe, stay strong, and stay well.