Season 7 of Marrow Masters focuses on chronic Graft vs. Host Disease sufferers, or GVHD "long haulers." And our first episode is about an important topic that doesn't get enough attention - reproductive and sexual health.
Dr. Areej El-Jawahri is an oncologist at Massachusetts General Hospital in Boston. And while that is her primary role, her work experience has taught her about the need to focus on these issues. A majority of transplant survivors struggle with sexual health issues and concerns regarding intimacy and fertility. Dr. El-Jawahri gives us the hard numbers, as well as a wide array of symptoms and side-effects.
She talks about the changing dynamic with couples when they become patient and caregiver, and how important it is to have open, honest communication regarding sexual health. Often, a patient's concerns about their partner are misaligned with what their partner is actually prioritizing! Communication is also crucial with your medical team. While these topics may sometimes be hard to bring up, they are important to discuss. And today's methods of confidential, electronic communication may provide a vehicle for those who are uncomfortable having these discussions in an office setting.
Dr. El-Jawahri also discusses fertility concerns for younger couples. Often, and rightfully so, there is a rush to treat a patient's cancer. But it may be worth consulting fertility specialists at the beginning of the process.
Peg and today's guest also talk about different forms of intimacy. While sex may be the first thing that comes to mind, there are other ways to be intimate and show each other attention and love.
Finally, Dr. El-Jawahri tells us about the jaw-dropping question a patient asked her that prompted her to begin paying more attention to sex and intimacy with transplant survivors.
Resources:
Dr. El-Jawahri's bio: https://www.massgeneral.org/doctors/19647/areej-el-jawahri
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/
Peg: Welcome everyone. Today. We have Dr. El-Jawahri of Mass General in Boston with us. Dr. El-Jawahri is going to share lots of information regarding sexual health, intimacy, and fertility, as it relates to being a survivor with chronic graft versus host disease. Welcome Dr. El-Jawahri,
Dr. El-Jawahri: Thanks so much, Peggy. Thank you for having me.
Peg: We're going to jump right in and hear a bit from Dr. El-Jawahri about sexual health, as it relates to transplant survivorship.
Dr. El-Jawahri: Peggy. I'm so glad you guys are doing this topic. This is such an important topic because it's really a common, common experience that our transplant survivors struggle with. Sexual dysfunction is one of the most common side effects that occur after cancer treatment. Approximately 60% to 80% of transplant survivors struggle with sexual health issues and concerns regarding their intimacy and fertility.
Sexual health, not only is it prevalent in terms of concerns, but it's also very multi-dimensional in that there are a lot of causes of sexual health issues for our transplant survivors. There are biological issues related to changes in hormones and biology related to cancer treatment, including vaginal atrophy, pain with intercourse, vaginal graft versus host disease, which is a major complication after transplant where the immune system of the donor attacks the recipients. So GVHD makes actually a lot of the sexual health concerns that our women and men struggle with a lot worse in the context of survivorship.
There are biological issues that affect our male transplant recipients, including erectile dysfunction, loss of libido. But beyond all these biological changes, we should note that sexual health and intimacy are effected by our emotions, our psychosocial wellbeing and how patients are doing in dealing with the stress of going through a cancer treatment.
Intimacy and loss of intimacy is very common as you go through a, transplant. Your relationship and the dynamic that you have with loved ones, with your partner, changes in the context of being a caregiver and a patient rather than an individual and a partner. And so all these changes, both social, emotional, psychosocial, as well as biological really impact our survivors and their overall wellbeing from a sexual health perspective. This is beyond the fertility concerns that we have as a result of cancer treatment. So this is a very common issue. I think we need to do a better job of talking about it and normalize it. Validating how common it is. more importantly, addressing it in our clinic.
Peg: I couldn't agree more. Dr El-Jawahri, we hear this so often from patients and I am thrilled that we are addressing this. What would you recommend for patients regarding the best way to talk to their spouse or their provider about their sexual health and intimacy issues after transplant?
Dr. El-Jawahri: Yeah, Peggy. I think the first piece of all of this is really recognizing that this is common and normalizing that talking about this is okay.I think in our culture, talking about sexual health and intimacy is still a little bit taboo and the reality is it shouldn't be, right? This is a biological change.
These are changes that are occurring as a result of cancer treatment. Just like we talk about neuropathy or pain or other issues that are cancer survivors struggle with. So I think the number one thing to think about is I would urge our transplant survivors to think about this, to think about how important this aspect of their life is to them and to bring it up in the clinical encounter.
And there's a lot of ways to just bring this up and I would say patients can bring this up with their physicians. They can also bring this up with their nurses, nurse practitioners, or social workers. So sometimes choosing the right member of the team that you feel most comfortable talking about these issues is also relevant. And recognize that we hear this all the time as transplant clinicians as well. The fact is this is such a common experience that the reaction from your transplant doctor or transplant team or transplant clinician is. We know this is an issue. Let me think about how we can best help you with this.
So I think first bring it up. Don't be afraid to bring it up just because we in the transplant clinic sometimes get busy and don't bring it up and don't put it as the number one priority on our list. Doesn't mean that we are not comfortable talking about it. And I would say the second piece is also, you know, Peggy to your point.
It's really important to talk about these things also with your partner and talk about both your sense of where you want to be with your intimacy, how this whole experience, the cancer experience, the transplant experience has impacted your relationship, and sometimes starting a conversation with your partner.
Things can really allow you to align your goals about where you want to go and really think about this idea of transitioning back to normalcy and survivorship. There's something about that that feels incredibly gratifying for our patients and families. So just remember as the patient going through this, I would also say.
Sometimes patients worry about body image concerns. How is the cancer experience has effected what they look like and how their partner perceives them from an attraction perspective? It's funny because when I talk to partners, what they worry about is, gosh, am I putting too much pressure on my loved one? Am I really struggling with causing them an infection after a transplant?
They're worried about their partner, right? They're worried about the patient. They want to make sure they're okay. And all of this, and those are the barriers for them to engage sexual activity. And so having a conversation and understanding the barriers on both sides is really key into figuring out where you guys want to go as a couple as a patient and a partner in your relationship and sexual health.
Peg: Absolutely. you know, as you're saying this, I'm thinking too, how different this role is in the younger person versus the older patient. And, when I think of the younger person, I also think of the burden of worrying about their fertility. such a big...they're fighting for their lives and then they have this other big thing ,elephant in the room. what if I want to have children someday? How do you address the fertility issue with your patients?
Dr. El-Jawahri: Peggy. That's such a critical question because often it's too late after a transplant to talk about fertility concerns. And I would say one of the hardest things when we take care of patients with blood cancers is a lot of, not all the time, but a lot of times patients present very acutely and they need treatment right away.
And that puts pressure on our capacity to address fertility concerns right away. However, I will have to say that even in the context of diseases like acute leukemia that are very acute, it is really, really helpful for us as a community of blood cancer clinicians to first think about this young patient.
Think about the impact of these high doses of chemotherapy that we give on fertility and simply ask the question, get these patients, the counseling that they need to be able to make educated, informed decisions about their fertility and what they want to pursue when it comes to fertility preservation.
Most of the time we have time to get them, to see the experts, to at least have a conversation about what the options are and that's important. And I would say on the patient side, empowering our patients to bring up these issues is really critical. The time to bring this up is at the time of diagnosis.
Peggy, it's not actually at the time prior to transplant. Prior to transplant, these patients have already gotten a good amount of chemotherapy coming to transplant. So our hope is really to empower our patients to really think about these issues very, very early. And it's hard. It's overwhelming time at the time of diagnosis to think about your fertility concerns.
So I think we have to work with both patients and providers to make this at the forefront. Listen, I'm an oncology clinician. I may not be able to have all the answers about. But I know my colleagues in reproductive endocrinology can help and I know getting them to have conversation, having a fertility doctor talk to a patient right before making decisions can make really a big, big impact on the choices they make when it comes to their fertility preservation.
Peg: Oh, this is great that we're discussing this. Let's get back to the GVHD suffers. You know, we hear so often. I just don't feel good. We all know when you don't feel good, intimacy is not top of mind. Top of the list. There's got to be other ways for the caregiver and the survivor to navigate this.
I mean, makes me think just. Sitting close to each other, just that touch, knowing that they are loved, knowing that they can vent and that person's not going to walk away. Maybe we should talk a little bit about some of the issues when it's the long haul with GVHD. How do you try to get back that connection?
Dr. El-Jawahri: That's such an important point, Peggy, because as you mentioned, a lot of our patients with graft versus host disease have a lot of fatigue, a lot of inflammation related symptoms and maybe sexual intercourse is simply just not what they want or need at the moment as they struggle with their illness. I will say that, to your point, we often, when we think about sexuality, we focus on sexual intercourse and physical intimacy. And that's our number one thing that we focus on. But the reality is intimacy is a broad concept and there's a lot of issues related to non-physical intimacy that sometimes make us feel closer to our partners than anything else that we do. Think about the time when, before COVID, when we could go on a date actually have a dinner, outside, but really talk about a romantic dinner at home.
Spending time where you watch a movie with your partner holding hands. A lot of these things that we just simply don't do, we get into our routine and not think about. I often encourage my patients and their partners to think about some gratitude letters, you know, thanking each other for getting through this terrible and awful ordeal as a way to enhance intimacy.
So there are a lot of exercises, little things that people can do and integrate into their routine to get out of. this concept of being a patient and a caregiver, and really think about themselves as partners. And I'd say that non-physical intimacy part and even the little physical intimacy, like holding hands, cuddling and watching a movie, those things actually matter so much more than sex does in terms of building a connection with your partner.
Peg: Oh, I don't any better. It also makes me think of a story. We had a couple where, you know, post-transplant, this woman just loved to make pies and she didn't have the energy. She didn't have the, she just couldn't stand that long. And hr loving husband said, well, let's make a pie together.
So he helped her. He learned how to make pies and it became something that they did together. And it was just to me, that is such a loving example of meeting your partner halfway. And I'm sure those are going to be the memories someday of a lifetime was the pie making.
Dr. El-Jawahri: And this is exactly right. Peggy is how do we really recenter our relationship on the things that we value about and the things that bring us joy and pleasure. That's what it's about when it comes to reconnecting and building intimacy and talk about the love, right? Talk about the love that you saw in that relationship.
And the giving that that partner had in sitting down and doing that pie together. That love that intimacy is more important than having sex at night. Right? So I do think those things are really, really critical and. I think get into a routine. And we get into habits and behaviors that are hard to break, and that's really one of the main things that we need to work on.
It's not that this intimacy and working on your intimacy takes so much time. It's the little things that matter.
Peg: I just couldn't agree more. I hope this helps so many people feel less alone. It can be a lonely experience going through transplant. Even with the best of caregivers. to have that love and support it, there's so many ways to get it.
And I'm just glad we're covering that. Do you have any stories perhaps of, a survivor that was maybe going through a rough patch and, was bold enough to ask the question and your team was able to help?
Dr. El-Jawahri: So Peggy, I do a lot of research on sexual health and intimacy. That's one area of topic that I study. And I want to tell you how I started doing this because I'm actually a transplant oncologist who does a lot of supportive care research, but never thought I would be a sex doctor or thinking about sexual health so much in my day to day life.
And the story is I was taking care of this woman who was in her early thirties. She was a woman with leukemia that I met. I met her and her husband. And, you know, there are some patients that you meet, maybe they look like you, maybe they behave like you. Maybe they're close to your age. We just had such a special bond from the moment I met her.
And I took her through transplant and we had a great connection, you know, during transplant and after transplant, Peggy, as you know, we see patients once a week. So I got to really know her and know everything about her, about her family, about her partner, about how they met. And it was about two years out from her transplant.
She just had her bone marrow biopsy that showed that her cancer is in remission. And she's likely cured of her leukemia. And we were celebrating in clinic. We said, you know, this is a big milestone. Congratulations. I was maybe three years out of my fellowship. I was still a young oncologist at the time with a lot less gray hair.
And at the time,it was like, congratulations, this is fantastic. And I was about to leave the room and she, asked me and said, Dr. El-Jawahri, I'm sorry to stop you before you go. Is it okay for me to kiss my husband now?
Peg: Oh,
Dr. El-Jawahri: And I had a mortified look on my face. Here I am, the supportive doctor who cares about the emotions of the patients who really got to know this woman so well, and I recognize that I've never had that conversation with her.
Never brought it up. I've never asked her about how she felt about her sexual health, how things were going. When it comes to that department and I turned around and sat down and got God, we gotta do something about this. Right? So here's this woman who, you know, got through transplant at a young age.
And at two years out from transplant was still worried that she may get an infection by kissing her husband. And so we have to do better. We have to better than that for our patients and their families. And the reality is it's not because I don't care about this patient, don't care about her needs. Simply wasn't the top priority on my end.
And now what I think we should be doing is honestly screening for sexual health issues. Immediately after transplant and talking about it at day 30 and day 100. So that we actually educate our patients about , what they can and can't do. So that is actually what made me a sex doctor. That encounter is what got me to do this study.
Peg: There was no coincidence there. You were supposed to hear that question and you were supposed to be so moved to do what you do. I think that is just a perfect example, and kudos to you for sitting back down and having that conversation. We get it. You are saving. You are busy saving lives.
At that point. it seems like it should be such a back-burner thing, I think you're right. Screening would really help just to even know if there are any questions, you know, and maybe being able to write it down versus trying to say it to your doctor.
Dr. El-Jawahri: Absolutely. And now we are in the digital health world, in the digital media world. And as you know, most of our patients communicate electronically with us on a regular basis, right through Gateway, through health record systems, or even through email. And so sometimes if it's hard to talk about the topic, it is completely appropriate and fine to ask the question, write it down, send an email and a secure message to your clinician. And they'll probably say, Hey, let's talk about this when we meet next time.
Peg: Absolutely. Oh, this has been terrific. I think at this point we've covered most everything. Do you have anything else you might want to add? As we wrap things up?
Dr. El-Jawahri: I would say the only thing I would add is that I just want people to know that we're really working on addressing the sexual health and intimacy concerns of our patients and their partners. We are thinking about really innovative solutions to get, interventions to patients home when it comes to sexual health.
For example, our team had built a mobile app that is designed to address sexual health and intimacy concerns, and actually have a lot of those intimacy exercises, Peggy, that we talked about. How do you rebuild that connection your partner? And so our hope is really to scale those, to disseminate those, to study those and to establish other ways to reach our transplant survivors, our patients with graft versus host disease who might be less comfortable bringing this to the clinic, but really want to address this issue. And it's a really important issue to them. So I just want all of your listeners to know that this is an issue that we're going to make progress on, and hopefully we'll have less and less of those mortified stories that I gave you, where a woman asked me two years after a transplant, whether she can kiss her husband..
Peg: Is this app available now or is it something that's going to be available in the future?
Dr. El-Jawahri: It's under study, but we'll be available in a few months so we can potentially share it after the trial ends in the next few months.
Peg: And when that app is available, we'll go back and add it to our show notes.
Dr. El-Jawahri,. I would like to thank you again for sharing your expertise and your passion about this subject. Is there anything else you might want to add as we close out this episode?
Dr. El-Jawahri: Thank you so much for highlighting this, topic. It's a really important topic and I'd like to thank the National Bone Marrow Transplant link for the opportunity to share story and our passion for addressing these issues.
Peg: Thank you again.