Resource Fair: Resources and reflection on fertility in CRC (2024)

Meagan Lockhart  0:05 
All right, good afternoon everyone. My name is Megan and I am with Colontown. I am a member of the Colontown Cabinet, as well as a Community Leader and Host in our early onset neighborhood, Youngstown, and our parenting neighborhood, The PTA. I wanted to thank all of the guests for coming this afternoon as well as my cohosts and the medical professionals, the doctors, here who will be talking to you this afternoon. I am so incredibly grateful for everyone to be here and being able to present this information to you here this afternoon. This is the first of a two-part series. Today we are going to hear from three fantastic doctors who work in the early onset colorectal cancer space or specialize in oncofertility. We were going to explore the different treatment options that people with colorectal cancer are faced with and how that can affect your ability to grow and expand your family and what options are available to you both pre and post treatment. We have Megan Scherer her here today. She is the Executive Director and co-founder of a nonprofit called Worth the Wait Charity. They provide information as well as grants and funding for individuals looking to expand their family after a cancer diagnosis. We also have Kayla Fulginiti. She is with Elephants and Tea. Her and her team will be hosting our second session next week, on Monday, February 12th where they will be leading us in a Healing Through Writing workshop, so we can explore how this situation has impacted our emotional wellbeing. I would like to introduce Megan who is going to kick off introducing the doctors we have here with us this afternoon.

Megan Scherer  2:21 
Great, thank you so much. And we have enough Megan’s on this call, I see three of us here. So my husband and I, Mike, we started Worth the Wait Charity after our own experience. He’s a testicular cancer survivor. We had trouble starting our family and so we’re giving back and educating, empowering and giving resources to those who need it in the cancer community. So it is my pleasure to introduce Dr. Kristen Ciombor. She is an oncologist with Vanderbilt University Medical Center, and a co-leader of their Translational Research and Interventional Oncology Research Program. I don’t know exactly what that means, but I’m sure she’ll tell us. And she specializes in treating CRC patients. She said at the beginning, as we were all filing in here to the waiting room, about a third of her patients are CRC patients. So without further ado.

Dr. Kristen Ciombor  3:18 
Thanks so much, Meagan and it’s great to be here with everyone today. I’m going to share my screen. So give me just a second to do that. Can everbody see that? Does it look okay? Great. Okay. Well, as Meagan said, I’m a medical oncologist, specifically a GI medical oncologist here at Vanderbilt, and I see quite a lot of patients and take care of a lot of patients with colorectal cancer. And as we’ll talk a little bit about, that is becoming a younger and younger population. So the question of fertility, and how to really incorporate that into treatment planning is really important. So I’m going to try to set the stage just for some of us to just lay out kind of how we think about colorectal cancer. And I will get to fertility, I promise. But I think a lot of the first few slides here have a lot of impact on fertility issues.

Dr. Kristen Ciombor  4:21 
So just as a definition, colorectal cancer, for the most part, this is what we call a garden variety colorectal cancer, is really histologically or under the microscope an adenocarcinoma. That’s just a fancy word for a gland forming cancer. It can happen in the colon or the rectum. We tend to delineate those, because there are differences in treatment and we’ll talk a little bit about that. But basically, there are rarer types of colorectal cancer. For the purposes of today, we’re going to focus on the adenocarcinomas, which are, as I said, garden variety. So colorectal cancer is unfortunately a big problem as you all know.

Dr. Kristen Ciombor  5:01 
These are the very recently published 2024 estimates of new cases in both men and women in the US, and you’ll see that overall of the almost 2 million cases of cancer expected to be diagnosed in the US, colorectal cancer is about 7% to 8%. And that’s true for both men and women.

Dr. Kristen Ciombor  5:22 
And even though there are some hereditary types of colon and rectal cancer, so things like Lynch Syndrome, FAP, Peutz-Jeghers, and other types of genetically linked syndromes, most of the colon and rectal cancer patients that are diagnosed, it just happens. It’s just sporadic. We can’t figure out a genetic link, at least not yet. So this means that everyone is at risk. Now, there is a subset of patients who even if we can’t find the genetic link, we do see that colon and rectal cancer really can be seen in family members too. So that does impact how we do surveillance in terms of family history and whatnot. But I think the important thing to remember is anybody can get this diagnosis.

Dr. Kristen Ciombor  6:15 
This is a figure that really is quite scary to me. And when I show the trainees here, the oncologists in training, they’re really stunned by this recent incidence, increase in colorectal cancer in young people. So what we see here is in the gray and the black, the decreasing curves, we’re seeing that over time, we are seeing a decrease in incidences, a decrease in numbers overall of people being diagnosed with colon or rectal cancer, primarily because colonoscopies work in terms of cancer prevention. But you’ll see that those patients, or those folks represented here, are really 50 and over. So it’s the under 50 population, who until the last couple of years weren’t even eligible for screening colonoscopies. The USPSTF has now said that it’s patients 45 and over who are eligible for screening colonoscopies. Clearly, that’s not young enough, because you see that blue bar of patients 20 to 34 being diagnosed with colorectal cancer. So this is a huge problem. We’re seeing this globally. And we’re trying to figure out why that is. But clearly, it has a huge impact. Because these folks are the ones who are in their prime reproductive years, as you all know. And really, we need to keep that in mind as we plan treatment.

Dr. Kristen Ciombor  7:42 
So how do we think about staging of colon cancer, and really, why staging is important is because it determines what kind of treatments are needed, and how likely cure is and how best we can get to cure. So we’ll be focusing just in the next few minutes on localized colorectal cancer, so that stages I through III. But in stage IV, which is metastatic or spread cancer, we do see some patients cured with that stage as well. But we’ll focus mostly on the treatment for localized colon and rectal cancer. So as I mentioned, staging is really important, because it impacts on how we think about treatments and how we think about long term prognosis. One just tidbit that I wanted to put out there is that anytime you are diagnosed with any stage of colon or rectal cancer, it’s imperative that you get tested for microsatellite instability or mismatch repair deficiency. The oncologist should be doing this automatically. In some places, it’s reflexively done, meaning as soon as the biopsy shows colon or rectal cancer, that is a test that’s automatically done, but not in all places. That’s really important because that also impacts on prognosis, whether you can be eligible for nonchemo type treatments such as immunotherapy, and then also help identify potential genetic syndromes like Lynch Syndrome.

Dr. Kristen Ciombor 9:11 
So this is, just a very quick slide in a nutshell, encapsulates how we treat colon and rectal cancer. And as I said, we split it into colon and rectal separately. Colon cancer is really most of the colon really up until the last 15 centimeters which is what we call rectal cancer. And for the most part, for a localized colon cancer, patients go to surgery first, and then we figure out later if they need adjuvant or postoperative chemotherapy. The chemo is typically in the acronyms of FOLFOX or CAPOX, which we’ll talk a little bit about. But that is pretty much how we determine treatment for colon cancer. It really goes back to that staging of whether chemotherapy would be helpful or if surgery is enough. Rectal cancer, on the other hand, is extremely complicated, because in part, at least, there are ways to personalize treatment much more than we ever knew until really the last decade. So that’s the good news is that it’s not a one size fits all disease anymore. There is the ability to personalize treatment. That’s why it makes it complicated for us. But it also gives us a lot of options. So we’ve seen a lot of improvements in rectal cancer treatment over the last 10 years or so. And depending on how high up in the rectum, how close to other organs it is, patient preferences come into play as well, which is great to have that option. But most patients who have stage II or stage III rectal cancer, which is the most commonly diagnosed stages, undergo what we call total neoadjuvant therapy. And that usually means some combination of chemo and chemoradiation. But what we’re seeing now is that because our treatments are getting better, not everyone needs surgery. It used to be just reality that everyone needed surgery, in addition to often chemo and radiation. And now, with what we call nonoperative management, a subset of patients can actually avoid surgery altogether. In some cases, they can avoid radiation. So it really is something to consider from the get go in terms of putting a good treatment plan together.

Dr. Kristen Ciombor 11:30 
Now I mentioned this postoperative chemo for patients who have colon cancer and get surgery. And really what adjuvant therapy means, which is another fancy medical term, is just giving more therapy once the surgery has cleared what we could see of the cancer. So we have to figure out, as oncologists, what is the risk if there are cells left behind in your body? And how can we best get rid of those before they can recur in other places. So there are two types of chemotherapies that are often helpful in this postop setting. One is called 5-Fluorouracil, which is an IV chemotherapy, and then its counterpart which is actually the same drug but in an oral form is called Capecitabine. And then the other chemotherapy that has to be given with either 5-FU or Capecitabine is called Oxaliplatin, and that’s typically given through a port as well. But these are really the only two therapies outside of immunotherapy for a few selected patients. These are the standard chemotherapies that are used. And so this has implications for fertility, which we’ll talk about.

Dr. Kristen Ciombor  12:41 
This diagram just shows that we have a lot of ways, a lot of data, to help predict risk of recurrence of the cancer and to help show our patients, okay, how important is each of these treatments. So for instance, if you have a very early, only say one lymph node involved in your stage III colon cancer, then surgery is doing the majority of the work to try to cure and keep this from coming back. However, if you have more lymph nodes, surgery is still helpful, but it may be that chemotherapy helps more in that and this is part of how we personalize treatment in colon and rectal cancer, trying to figure out how much chemo is needed, is chemo needed at all, can we just look at surgery and so on.

Dr. Kristen Ciombor 13:30 
So, there are some very common side effects from chemotherapy, particularly from these two agents I mentioned, the groupings of the medicines FOLFOX and CAPOX. And the most notorious ones are cold sensitivity and neuropathy. And neuropathy, of course, can be an irreversible side effect from Oxaliplatin. Though if you can stop it soon enough before the neuropathy sets in, sometimes that can be avoided. Now you’ll often hear about another regimen called FOLFIRI and that is a different combination of 5-Fluorouracil and Irinotecan. We actually don’t use that in the early stage setting with the exception of some rectal cancers. But it does have a different side effect profile. So I wanted to put that out there. Hair loss and diarrhea are possibilities, though not everybody gets those. But in general chemotherapy, as you likely know, have common side effects like fatigue, nausea, mouth sores, blood counts can decrease temporarily and then temporary infertility. So that’s really important because with our chemotherapies, this is not true for every chemotherapy, but our chemotherapy regimens, the infertility risks are generally temporary. You may lose your periods during chemotherapy. You can’t depend on that though. So we still recommend that patients use contraception, effective contraception, because we do worry about potential birth defects in babies that are conceived during chemotherapy. That being said, we can also safely give chemotherapy to patients who are pregnant. So as we’re seeing younger and younger patients, people diagnosed with colon and rectal cancer, and we have to do the treatment anyway, there are ways that we can do that. It requires a very expert multidisciplinary team. But certainly it can be done.

Dr. Kristen Ciombor  15:33 
And then I’ll just kind of introduce the fertility concerns, and then Dr. Martin is going to talk a bit more about this specifically. But we think about the three types of cancer treatments that are most common for patients with colon and rectal cancer. One is radiation, which has a big impact on fertility and often irreversible, unfortunately. Depending on where your surgery is for the colon or rectal cancer, what type of surgery, what other organs that may impact, that can also have an effect on fertility and reproductive risks. And then chemotherapy, as we’ve talked about, you know, kind of looking at the type and amount of chemotherapy and how that might impact on fertility. So one thing that I try to think about that’s really critical in, especially young patients with colon and rectal cancer, is we have to think about fertility from the get go. So as soon as the diagnosis happens, one of my first questions is, do you want to have children at some point? What does that look like for you? And many people don’t know and that’s okay. But it’s worth that conversation because oftentimes, once treatment starts, the options may become more limited. So we try to address that right at the beginning. And we try to plan treatment with future fertility of mind, as Dr. Martin will tell us a little bit more about. What I really want you to take home is that we’re doing a better job of being able to personalize treatment, so that not everybody gets the same cookie cutter regimen. And it’s not only staging and other things, the cancer factors that impact on that, but it’s also goals and preferences of the patients too. So we try to work, as much as we can, within those goals and preferences too.

Dr. Kristen Ciombor 17:26 
And finally, this is just my last slide. It’s not just during treatment that fertility and reproductive issues come up. We also have to think about it during the surveillance period. So once you’re done with all of your treatment for the cancer, and you’re declared no evidence of disease, we don’t see any cancer, we still follow you for five years, typically. And that requires some things such as scans, CT scans, MRIs, colonoscopies, which may include anesthesia. And those are actually important too, because if you’re trying to get pregnant, we don’t want to subject you to radiation from imaging. So we do have to think about that and plan for that as you’re going through surveillance. In addition, we also want to understand the risk of recurrence so that we know what is the chance that this cancer could come back in the next five years. And finally, just a plug for germline genetic testing. We refer a lot of patients to our genetics team and I know other institutions do this, Many times you can actually also get this tested from your oncology team. But understanding the potential hereditary risk for either other cancers in the future or hereditary risk for passing it down to other family members, including future children. So I hope that’s been helpful. And I will turn it back to Megan.

Megan Scherer 18:56 
Thank you. That was super informative. I learned a lot and I hope everyone else did. Meagan, were there any questions from our audience?

Meagan Lockhart  19:06 
We do not have any questions submitted yet. If anyone has any questions, please post them in the chat at any time and I will ask our team of professionals here once they’re done speaking. And then if there’s something you may be a little uncomfortable with sharing as this is recorded, please feel free to send me a private message and I can ask on your behalf. No problem at all.

Megan Scherer  19:34 
Awesome. Okay. Then we will move on to Dr. Caitlin Martin. Dr. Martin is a reproductive endocrinologist and infertility doctor and Assistant Professor of Clinical Obstetrics and Gynecology at the University of Pennsylvania. Her special interests include infertility, fertility preservation and oncofertility. Thanks so much for joining us.

Dr. Caitlin Martin  19:59 
Thanks for having me. Can you guys see my screen?

Dr. Caitlin Martin  20:01 
Okay, perfect. So it’s nice to be able to speak today. So thanks so much for having me. So these are the topics that Megan asked me to cover. So to talk about how to begin thinking about starting your family and survivorship, speaking about fertility preservation in general, using a surrogate, or also as we call them, gestational carriers, speaking about ovarian transposition and also covering other donor conceived options. So there are a variety of options that we can offer before treatment, sometimes even during like in between one piece and the next piece of treatment, and also after. So whenever I meet a patient, it’s important for me to understand where they are or where they are as a couple in terms of the treatment course. So the gold standard, like the best option for a lot of patients is doing egg or embryo freezing before their treatment starts. But this isn’t the best option for everybody. Because sometimes the treatment does need to start yesterday, you know, before I even see them and there’s no time even to see a reproductive endocrinologist. So we’ll touch a little bit upon this. And this might not apply for everybody in the audience too or who’s viewing it later. And so sometimes this isn’t offered because there isn’t time to actually do a cycle. But we’ll still talk about it briefly because it also plays a role if this treatment is needed later.

Dr. Caitlin Martin  21:42 
Another option is what’s called a variant tissue cryopreservation. This option is actually taking out an ovary or pieces of the ovary to freeze and then get reimplanted in the future. This is not always the best option for patients for a variety of reasons. One of them is if there is concern for any spread outside of the initial site of the cancer, you could potentially put the tissue back in later. And so a lot of patients are obviously concerned about that. But also, patients typically still would need to do IVF potentially in the future, which is why that’s another reason why some would want to do egg or embryo freezing if this was sort of the category that they’re in.

Dr. Caitlin Martin 22:31 
The different chemotherapies have different mechanisms of action. And so as we just talked about, the different chemotherapies might have a different effect on the ovaries. So this doesn’t apply for all cancers. But some cancers do have chemotherapies that are particularly gonadotoxic, particularly damaging to the ovaries, not just during treatment but for the long term. For patients who are worried about that, again, it’s not a lot of this group, it would be other groups like breast cancer, for example, we do recommend using a medication to suppress the ovaries. And the idea is to decrease blood flow to the ovaries during chemotherapy in order to, in theory, protect the ovary and specifically the cells that are on the ovary. So this is called leuprolide acetate or Lupron, you might come across as the trade name for it. Even in the case where we’re not really sure what the long term effect would be, I often still recommend this because it is sort of a low hanging fruit, if you will, that could potentially prevent the decline of some of the ovarian function.

Dr. Caitlin Martin  23:36 
Another option is what’s called an ovarian transposition, which we’ll talk about a little bit more later. But if someone needs a different surgery in their pelvis, and it’s known that they’re going to need radiation specifically later, we could as gynecologists, you don’t need special training in infertility, for example, can tack the ovaries up, move them out of the space where they might get more of an impact from the radiation and actually move them higher up in the pelvis to be more farther away from the field of radiation.

Dr. Caitlin Martin  24:09 
So to talk just briefly, this is not meant to be an IVF talk, but to talk briefly about what this process would entail. When we’re talking about egg or embryo freezing, we are really talking about going through the IVF process. So going through a two week period where someone comes in many times, usually between eight or nine times during this two week period to a reproductive endocrinology and infertility clinic, for lots of monitoring. This is a picture of the ovary, this blue circle here with the pink dots, it’s not actually what it looks like, its just the representation here. I did not choose the color. Basically when we’re doing IVF we try to get as many of these little fluid filled sacs on the ovary to grow as possible. Why? These little fluid filled sacs contain the eggs. And so we try to get as many of these eggs to grow as possible on the ovary to then retrieve them during an egg retrieval process. And egg retrieval is done under sedation when someone is made nice and sleepy by a nurse anesthetists at our clinic. The anesthesia differs from clinic to clinic. And we place an ultrasound in the vagina and use a needle to go through the vaginal wall into the ovary and we drain all the fluid from the follicles, these fluid filled sacs. And hopefully with the fluid comes eggs. The procedure itself is really short, it’s about 15 minutes, but it’s a whole lot of effort leading up to it to come in for all of these monitoring visits. The procedure itself is pretty safe as well. There’s a low risk of having injury to surrounding structures, It’s pretty well tolerated. So if someone does not have a partner, we recommend just freezing eggs, then the eggs are frozen that day and are available to be stored, cryopreserved, indefinitely until someone wants to use them. If someone does have a partner, we could also freeze embryos instead. So actually mix the sperm and the eggs together, grow embryos, and freeze those embryos on day five, six or seven after the retrieval. That was obviously a very brief overview of what the process actually looks like. But just to kind of give you a little sense, but as you can see, some people can’t really wait two, three weeks to get this done. Though most clinics can get you in pretty quickly to get started with this, or at least to have an evaluation.

Dr. Caitlin Martin 26:32 
So I’m also going to kind of flip back and forth too between males as well. So something that can be done much quicker, is doing sperm banking, because that just requires one ejaculate or sometimes more than one ejculate. How this would work basically is contacting a clinic that is able to accommodate storage, at least in the short term, of sperm and then a lot of times the sperm will get stored off site. Sometimes when people are sick, they’re unable to have as normal of a semen sample as they would otherwise because their body diverts energy away from making sperm. Their body recognizes now is not the time to procreate. But depending on whether or not it impacts fertility, there could be better semen parameters in the future or not. But when someone does freeze sperm, the amount of sperm in the sample dictates how you can use that sperm either with inseminations, which are sort of just placing sperm at the top of the uterus when someone is ovulating, versus IVF, where you need much less sperm, you really just need as many sperm as there are eggs. Again, brief overviews. But some folks might want to freeze sperm ahead of time with concern that there could be an impact on sperm production.

Dr. Caitlin Martin  27:50 
So how to approach family building? So I tried to look at it sort of from both directions, from either the male side or the female side. So female fertility is mostly tied to age. Okay, so I know this is a group of patients diagnosed at a younger age typically. Why is female fertility related to age? Well, as women we’re born with all the eggs we’re ever gonna have. We actually have the most when we are 20 weeks in utero, which is a very silly design because no one needs eggs, when they’re 20 weeks in utero. We have about 7 million then, have about 1 million when we’re born and at puberty have around 300,000. The average woman ovulates, about 300 to 400 eggs throughout her lifespan, and the average age of menopause is in the early 50’s. So our success of being able to get pregnant is tied to age. As we age, it’s harder to get pregnant. And then the quality of our eggs also declines as we’re older. So when does that decline happen? There’s not like a ticking time bomb at age 35 like social media and everything likes to tell us, but there is a decline that infertility does happen in the later 30’s. When patients are younger, they’re generally less affected by treatment too, because their ovarian reserve is more robust compared to when they’re older. So age is definitely a big factor and does come up a lot in my discussions with patients.

Dr. Caitlin Martin  29:09 
Another question is if you are a survivor, how far are you out from treatment? If you just finished treatment recently, you might want to wait some time to see what happens with your ovarian function. Some patients might get periods back right away, some might not, some might have had periods the whole time. It kind of depends on the individual’s picture. In addition, a lot of times, oncologists aren’t really keen on you getting pregnant right away after. It kind of depends on your individual picture. Something that would be particularly challenging is if there is a recurrence or some other complication of the illness while you’re pregnant, it sort of makes the whole clinical scenario more challenging for you certainly, and it should be a decision that you’re able to move forward with with consulting all of your care team and has the doctor cleared you for pregnancy? So, that’s basically talking to your doctor about whether or not now would be the appropriate time to get pregnant.

Dr. Caitlin Martin  30:04 
Another question is, should you see a high risk pregnancy doctor? Should you see a maternal fetal medicine specialist? I think it’s helpful to assess individual risk ahead of time. And so I think that it is helpful, especially if you’ve received radiation to the uterus, to find out if it would be appropriate for you to carry a pregnancy or if it’s more appropriate to have a gestational carrier or a surrogate. And then other signs like are you having menstrual cycles? Having a menstrual cycle does not tell us that your ovaries are perfectly healthy and functioning. It is a vital sign, if you will, that we use in OBGYN, but it is not the only thing that we look at. And then also I just heard too, are you experiencing any signs of menopause? If you are having hot flashes, vaginal dryness, stuff like that, that could be tip offs that the ovarian reserve hasn’t recovered or still it is not in a place to be able to conceive.

Dr. Caitlin Martin  30:59 
In terms on the male side too, how far from treatment are you? So the sperm cycle, fun fact, I know we said that as women we have all the eggs we are ever going to have when we are 20 weeks in utero, as men, every 74 days is the average sperm cycle. I guess you can add another 15 days or so for the way that the sperm travels from one part of the testes to the next. But the cycle is much more shorter than women and guys make sperm much more frequently. We can’t make new eggs, but guys do generate new sperm all the time. So I would obviously want to wait at least three months after treatment, in particular for a male, to assess the sperm. And then also I just put are there any signs of any sexual dysfunction that might make it more challenging to conceive?

Dr. Caitlin Martin 31:47 
And then one other piece I added here is is there an inherited gene. So by doing IVF, we can do genetic testing of the embryos to screen to see if the embryo is predicted to carry a certain gene that could be seen with different genetic cancers, like with Lynch. This is something that a lot of practices do, and can help decrease the risk of passing on a gene to future generations.

Dr. Caitlin Martin 32:17 
In terms of using a gestational carrier or a surrogate. If people have received significant pelvic radiation, it’s sometimes unclear whether or not the uterus will be able to support a pregnancy. So what does this mean? Can someone get pregnant stay pregnant? Perhaps. However, the concern is for preterm delivery, other complications with placenta, other complications of the pregnancy that might be seen as being too risky ahead of time. So this is why it would be helpful to talk to MFM, maternal fetal medicine, ahead of time to assess that risk.

Dr. Caitlin Martin 32:50 
To use a carrier or a surrogate, this does require IVF. It doesn’t necessarily have to be with your own eggs or your partner’s sperm. But it does require going through that IVF process that I briefly touched on. Laws do vary from state to state. I know this is crazy, but it is true. So it depends also what state you’re in if you’re able to even go through with this in your state. Cost varies widely too depending on whether you know someone that’s being your carrier or if it’s through an agency. And insurance also has to be separately purchased for the carrier. They can’t just go through their own insurance company like a pregnancy would normally. And then also I just added a bullet point about known carrier versus through an agency. If someone you know volunteers to do this, it’s less expensive than usually paying fees through an agency. There’s also a lot of legal, everyone has to meet with lawyers, there’s legal documents, everything is sort of set up to protect you and also protect the carrier.

Dr. Caitlin Martin  33:57 
The guidelines vary from clinic to clinic for who can be a gestational carrier. I just tossed in the guidelines that we use at our center. It’s based upon our society’s guidelines. I won’t belabor that point.

Dr. Caitlin Martin  34:12 
I talked briefly about ovarian transposition in the beginning. So if surgeons are already going to be in your abdomen debulking or otherwise doing surgery, a gynecologist could be called, hopefully consults ahead of time, to move the ovaries out of the field. This could potentially make IVF a little more difficult later because of the location of the ovaries. However, we’d rather the ovaries be protected than not. Again, a gynecologist doesn’t necessarily need specialized skills to be able to do this. By the same token, you could also tack the uterus up a little bit too and try to get that out of the field too if need be.

Dr. Caitlin Martin  34:50 
And lastly, just to talk about donor conceived options. There are so many ways to build your family and building your family the “traditional way” is not necessarily the right way for you or for your family. It might be the way that you thought things were gonna happen. But it might not be the way along your journey that you ended up building your family. And as a reproductive endocrinologist, I’m here to help you build your family whatever way you see fit. And again, each person’s trajectory might be different. Someone might not come to me wanting an egg donor, but that’s how we might end up getting them pregnant in the end. Or using a carrier, you know, everyone’s journey can be different. So there’s, of course, donor sperm if someone is in a same sex relationship or if their partner is the one who was affected by the cancer and is no longer producing sperm. Or also if they’re single. So we have plenty of patients that choose to parent without having a partner.

Dr. Caitlin Martin  35:44 
We’ve already talked a little bit about donor eggs. Donor eggs can be purchased through an egg bank. Some clinics have fresh donors go through versus also using a known donor, like a sister or a cousin or a friend.

Dr. Caitlin Martin 35:59 
Donor embryos are also an option. Some people also call this embryo adoption. So using embryos that were created by a different couple that are no longer needed. There’s a plethora of extra embryos in the field that are just in storage tanks around the world, really. And so there is a way to get an embryo through this venue as well. It depends on what clinic you’re at. And there’s also national agencies too.

Dr. Caitlin Martin  36:26 
I know there’s a lot of information, I’m happy to take any questions that you might have.

Meagan Lockhart  36:33 
I do have some questions.

Dr. Caitlin Martin  36:35 
Yeah.

Meagan Lockhart  36:35 
And thank you so much for your presentation. And now I feel like there may be some overlap in these questions for either you Dr. Martin, or you Dr. Ciombor. So whoever wants to jump in, please feel.

Dr. Caitlin Martin  36:50 
Awesome.

Meagan Lockhart 36:52 
Our most asked question is, how long after treatment is it usually generally recommended to start trying to conceive? And then does that timeline change if you’re trying to do it naturally or complete the IVF process you may have started previously.

Dr. Caitlin Martin  37:15 
So I’ll let Dr. Ciombor talk about timing, too. That I usually leave up to the oncologist. In terms of trying on your own, I meant to discuss this too during. So sorry I left this out. Infertility is 12 months of trying if you’re under the age of 35 without success and if you’re over 35, we say six months. Not that someone over 35 should conceive faster, but there’s less time on your side, if you will, so we want you to come in sooner. With that being said, if we know that there is a potential for a decrease, for subfertility, if you will, because of treatment, because of the timing, it’s always okay to see a reproductive endocrinologist earlier.

Dr. Kristen Ciombor 37:53 
Yeah, and I would say from a chemotherapy standpoint, we typically say wait at least six months after the last chemotherapy. I usually try to get surgical input if surgery is the last treatment in terms of just abdominal wall, pelvic wall, musculature and other things like that. And then, so from kind of a toxicity of therapy, I would say about six months, typically. Then, as I mentioned, it’s really individualized in terms of recurrence risk, and how much surveillance you want to get under your belt to really feel comfortable moving forward. So that really can be very variable, depending on the patient.

Meagan Lockhart  38:40 
For sure, amazing, thank you!

Dr. Caitlin Martin 38:44 
Can I add one more thing? Okay, so I think patients often ask me this during their visits and so that’s why I bring this up. A lot of people worry that if they’ve received chemo before that the eggs that are in the ovary itself will be damaged. But what we find is that there might be less eggs than there would have been normally if there hadn’t been chemo in the past. But what we find is that the eggs that are there, the rates in which they’re normal or abnormal is tied to age just like anybody else. So, of course, we can’t account for like tiny deletions and stuff and different breaks in the DNA that we can’t test for. But that’s part of the rationale behind waiting like six months after chemo, but I just kind of wanted to throw that in there because that’s a commonly asked question.

Meagan Lockhart  39:36 
That’s really interesting, because I had another question on the docket as to if embryo freezing was done, should they continue that route with IVF or if they want to try naturally first, if there’s any benefit to either of those paths?

Dr. Caitlin Martin 39:52 
It depends on the scenario. It depends on the patient. I think some people want to use them because they have them there and they went through the whole process and the financial aspects that went with it. But if you were doing this, like for genetic testing purposes, like obviously, it would make sense then to use the ones that were tested. But there’s no harm in trying on your own either. I think also part of the conversation isin  an ideal world, how many kids would you have? If the answer is that you really wanted to have a bigger family, then try on your own first, maybe not for two years, try for like six months to a year, but then consider using the frozen ones. Otherwise, you can use the frozen ones as you age and you’re just combating age related fertility decline, you know.

Meagan Lockhart 40:38 
That’s fantastic. And is there any testing done after treatment to ensure that fertility is still intact and does having an IUD in place at that time impact said testing?

Dr. Caitlin Martin  40:53 
IUDs do not impact the testing. And so I get this consult in general, a lot. Can I get pregnant? And the answer is, I don’t know. So in terms of fertility testing, we can get a couple of things. Basically do an ultrasound to look at the ovaries to count the number of these fluid filled sacs, the follicles, that are available on the ovary. This number changes from month to month because there’s a pool of eggs that are available each cycle, but it’s reflective of the entire pool. So when someone’s younger, they have more in their pool than when someone’s older. So when we’re younger, we have more of these follicles available than when we’re older. And that’s true too if someone gets, an ultrasound before chemo versus after it can help us assess, but we don’t even need a before and after, because it’ll just give us a sense of how you’re doing after. And then otherwise, there’s a blood test called an AMH level that we can get to assess someone might respond to with IVF. And then also we test an estrogen level and something called the FSH value to assess how hard is the brain working to get an egg ready to be released? So there’s proxies. But no testing I can do, unfortunately, can say definitively can someone get pregnant or not? I wish we had that testing. That would be really helpful.

Meagan Lockhart 42:10 
For sure. And now, is there any increased risk of recurrence of the cancer from a woman’s hormones during early pregnancy?

Dr. Kristen Ciombor  42:26 
Sorry, can you repeat that real quick?

Meagan Lockhart  42:29 
Is there any increased risk of recurrence of the cancer from the hormones in early pregnancy?

Dr. Kristen Ciombor 42:37 
Yeah, that’s a great question. I actually meant to mention that in my talk, but colorectal cancer is not like breast cancer or other kinds of cancers that can be hormonally driven. So we actually don’t worry as much in terms of colon cancer recurrence, like changing or increasing based on hormones for pregnancy. So that’s one way in which this is a little bit easier.

Meagan Lockhart 43:05 
Awesome. And my last question. If reoccurrence happens during pregnancy, I know you said Dr Ciombor that you can do treatment during pregnancy. Is there a specific gestational time where that can begin? What would the protocol be if someone does recur while pregnant?

Dr. Kristen Ciombor 43:28 
Yeah, it’s a great question and something that we’ve dealt with. As I said, I actually have had patients pregnant going through initial treatment and also I’ve seen patients recur while pregnant too or while trying to get pregnant. So it depends on what’s needed, treatment wise. So sometimes if there is one spot in the liver or the lungs, and we can either radiate that or ablate it or take it out pretty minimally invasively, that often is not too much of an issue. And it kind of depends if we need to do more chemo or radiation and the risks of where in the body the recurrence is. But believe it or not, there are many things that we can do, even while pregnant, pretty safely for patients. So we try to avoid the situation if we can, but if we’re in it, we do the best we can and often we can do okay.

Meagan Lockhart 44:34 
Amazing. Thank you both so much. And that’s all I have for the time being.

Megan Scherer 44:41 
Great. That was so fascinating to just understand, especially during the pregnancy part of it, so thank you both. Okay, next up, we have Dr. Andreana Holowatyj and she’s an assistant professor of medicine and cancer biology, also at Vanderbilt, and her research focuses on improving clinical care and outcomes for patients diagnosed with GI cancers. She also established and is the principal investigator of the Preserving Fertility After Colorectal Cancer, which is the PREFACE Study. And she’ll be talking about that today. And it’s a clinical study that focuses on the essential need to treat the whole patient for whom multiple life domains are impacted after a colorectal cancer diagnosis before the age of 50. So welcome.

Dr. Andreana Holowatyj  45:32 
Thanks, Megan. And thank you everybody for having me. I’ll try and keep this really quite brief and high-level overview. I am fortunate to follow two really relevant talks here just to introduce in the research field what we’re trying to do to address some of these unmet care needs overall. Briefly, my disclosures, I just want to kind of prime the field briefly before talking about PREFACE. Anecdotally, we know that reproductive health is an important care need after an early-onset colorectal cancer diagnosis. In fact, society guidelines across the board have clinical practice guidelines for fertility preservation where they suggest that for all patients diagnosed with cancer who are of reproductive age, a discussion about risk of infertility and fertility preservation should be had prior to treatment with every single patient, regardless of whether that treatment may impact fertility or not, to adequately convey that message. However, our knowledge on this in asking patients, we know anecdotally from patients that this conversation isn’t often being had, and is an important area of unmet need. But we found when trying to do research on this, we were asked to show the data as to the fact that this conversation isn’t happening. So during COVID, we opened the REACT study. And just for brevity, I’m not going to go through much of that but we asked patients did a healthcare provider involved in your cancer care discuss fertility preservation options prior to starting your treatment?

Dr. Andreana Holowatyj 47:09 
And as you can see that the arrow points to, we see about two-thirds of early-onset colorectal cancer patients, we had over 150 patients with colorectal cancer in this study, reported that this conversation was not had. This aligns with what some organizations have released, but really is the first patient-fulfilled perspective, for what reasons or biases there may be. But this is anecdotally telling us there’s not concordance in this conversation being had within colorectal cancer, but also across other cancers.

Dr. Andreana Holowatyj  47:41 
And we went on to also ask patients, across 18 different domains of your life, which are illustrated here, what impact has your cancer had on each of these specific domains? Is it greatly negative, somewhat negative, no impact or positive. And when we arranged these 18 for colorectal cancer patients, under 50, we saw really clearly fertility and sexual health pop out as the top two domains that had the greatest negative impact. These data were quite compelling and supported the National Institute of Health and National Cancer Institute providing us a multimillion-dollar seven-year grant to support the preserving fertility after colorectal cancer study or the PREFACE Study where we’re focused on improving reproductive health care for patients with early-onset colorectal cancer. Initially, we really had a couple questions we wanted to address within PREFACE. How do we approve and improve reproductive health care assessment and adherence for these clinical guidelines regardless of whether you’re being seen at an academic medical center or a community setting? We proposed and are working to do this in PREFACE by establishing specific health measurement tools that can be broadly applied in clinical practice for all early-onset colorectal cancer patients being seen and really developing a robust resource platform that anybody can publicly access, whether in a rural area, or whether in an urban setting where there are multiple institutions that really specialize in this. We also really wanted to address, from a physiological component, how do we get support for universal insurance coverage of these fertility treatments discussed by Dr. Martin, that can be very expensive, for both females and males after an early onset colorectal cancer diagnosis. Right now, there are no federal guidelines for this. And different states have different mandates, and some of them will only cover a conversation with reproductive endocrinology. And we realize that we could deliver key biological evidence,  meaning we test hormones using FDA approved clinical assays over the course of the colorectal cancer journey, to really confirm and establish colorectal cancer related infertility in order to yield evidence and support for this coverage. And so in PREFACE, I really took a personalized clinical study approach, being mindful that treatments vary for each patient.

Dr. Andreana Holowatyj  50:15 
Just to walk you through this briefly. So there are some exclusion criteria. But largely we recruit any adult under the age of 50, who’s been newly diagnosed with colorectal cancer seen at Vanderbilt. And prior to starting treatment, we asked them to complete a personalized survey, we asked for a blood draw because this is how we can objectively test hormone levels, and we start to ask about monthly menstrual patterns, and we also are measuring physical activity using a small type of Fitbit like device. And so as we pass through primary cancer treatment, we personalize this based on the stage of disease and whether patients are diagnosed with colon or rectal cancer as Dr. Ciombor talked about the different treatment options and regimens that oncologist will deliver or recommend as therapy. But in a nutshell, we collect tissues when surgery is conducted. So we can take a Magic School Bus approach and understand on a molecular level, what’s going on with the tumor. We continue to measure hormones in blood and we also do follow-up surveys important to reproductive and sexual health, but also addressing some of those other life domains that we have the opportunity to ask about to help improve outcomes. And for female sex at birth patients, we continue to ask about menstrual patterns all along this way. And just survivorship which this is pasted from one of our publications, we call this phase surveillance. We have three additional study time points.. The nine-month time point, we do one one-on-one interviews. We can ask questions in a survey based on what we know we should be asking, but we don’t know what we don’t know, for lack of a better term. And so this one one-on-one qualitative interviews really an opportunity to ask patients about their individual experiences, and utilize some of that language and terminology to take some analytic approaches and be able to design some better tools to help make sure we’re asking all the right questions and to do so in a timely capacity in the clinical setting. And at all three of these time points, we again repeat surveys, blood draws and focus on physical activity. This will allow us to do things like look at a genetic component related to fertility, look at how metabolism and energy balance may impact or how physical activity may impact fertility, etc., all along the colorectal cancer journey. So we just got PREFACE funded less than a year ago. So we’re really excited to be embarking on this important journey to really deliver much needed evidence for both physiological and psychosocial support for patients in this space. I just want to briefly acknowledge my team and provide contact information. These folks work day in and out supporting the PREFACE Study from recruiting patients in clinics, including Dr. Ciombor’s we’re lucky, to collaborate with, and also to work with the samples and behind the scenes.

Dr. Andreana Holowatyj 50:18 
There’s contact information and the PREFACE Study website included below. And of course, I want to acknowledge all of our colleagues. This is not done in silo. This is really team science. And our generous funding that has really helped to support this initiative and hopefully deliver this much needed evidence in a timely way. And that’s all I got.

Megan Scherer 53:49 
Thank you. It’s so amazing to know that there are so many talented professionals working on this. It is such a critical need in survivorship and in treatment as well. Okay, Meagan, interrupt me if you have any questions.

Meagan Lockhart 54:06 
I don’t have any questions. And I hope the individual is not going to get upset at me for sharing this. But I did receive a private message moments ago saying, “I could cry. I am so excited that the PREFACE study is looking into this.” I think that thought is echoed by many, both in the presentation and who have registered that aren’t able to come. So thanks to all of you here who are doing this incredible work to be able to help patients in Colontown and all CRC patients, including myself, in this realm. Now I’ll throw it back to Megan for our final overview of some resources.

Megan Scherer  54:49 
Yeah, we heard all the options available. We also heard how expensive it can be. So I just want to let you all know, as you’re looking at preserving or family building, there are resources out there Worth the Wait, the charity that my husband Mike and I started, we offer assistance for emergency preservation, as well as family building grants. There are some income requirements and other requirements. So feel free to check out our website or shoot me an email if you have questions about that. I know we also touched on insurance coverage. My advice would be, as you’re starting out, either newly diagnosed or ready to start that family, do some research to see what your insurance covers. Over the last few years, there has been a lot of strides in either state mandates or larger companies having kind of extra benefits like Progyny, if you’ve heard of, where they offer fertility and family building for people with cancer and without. So definitely kind of do your own research before you start so you’re able to properly budget as you build your family. I was so glad to see how inclusive Dr. Martin was in her presentation of all of the options. Like she said, just because you thought you might have a family that was created one way, it doesn’t mean you will. And there’s so many beautiful ways to do that. One thing that we haven’t touched on yet is adoption. Adoption is a wonderful way. We also give grants for that. I would encourage you to do some research about who the reputable and ethical adoption agencies are. There’s a lot of people out there, and there’s a lot of great ones. But you need to know what you’re getting into beforehand. Also, as far as international adoption goes, there are some countries where cancer survivors are not able to adapt. So kind of knowing what you’re getting into before you start. So with China, you’re not able to adopt as a cancer survivor. However, Colombia has a very friendly program for cancer survivors. So with that, please check out Worth the Wait. I will also give a plug to my friend Bikira at United Colors of Cancer. They’re a nonprofit that’s national.They have a family building grant cycle that ends on Valentine’s Day. So if you’re ready and want some assistance right away, they’re a great one to check out. Its United Colors of Cancer and Meagan will have that in our resources. And I’m sorry, I know we’re over time but I don’t want to leave without giving Kayla the opportunity to talk about part two of our webinars. So Kayla.

Kayla Fulginiti 57:39 
Yeah, thanks, Megan. I will be very brief. But we just wanted to remind everybody that part two will be happening on Monday, February 12th. I want to make sure I get the time right. It’s 7pm. Eastern. We know that none of this can happen without also the impact on one’s emotions and one’s mental health and psychosocial coping. So us at Elephants and Tea, myself and my colleague Lisa, will be facilitating a writing workshop to utilize writing as a way to kind of cope and process everything that goes along with this entire experience. So we would love for people to come back and join us for that part in two weeks.

Meagan Lockhart  58:28 
Amazing, thank you, Kayla. We are looking forward to seeing you next Monday. Time is flying. So I don’t think it’s quite two weeks away yet. But it was super exciting to have our three doctors here to present. So my sincerest thanks from the Colontown team to Dr. Ciombor, Dr. Martin and Dr. Holowatyj. Thank you all for coming. And it has been my incredible honor and pleasure of working with both Meagan and Kayla in putting this all together for you today. I think our next steps are that I am going to be emailing this recording to all of our registered guests. So for those who were unable to attend the live session today, they are able to watch it at their own leisure in the evening and be ready and prepared for our Writing Through Healing Workshop next week. So thank you all again and I’m going to turn off the recording