Symptoms Spotlight: Vaginal Dryness with Abigail Johnston and Melanie Sisk

In this episode of Symptoms Spotlight, hosts Abigail Johnston and Melanie Sisk take an honest and personal look at one of the most common yet least talked about side effects of metastatic breast cancer treatment: vaginal dryness.

Both living with MBC, Abigail and Melanie share what has worked for them, from water-based lubricants and coconut oil to topical lidocaine cream and low-dose estradiol. They talk openly about the emotional toll of painful intimacy, the importance of a supportive partner, and the challenge of finding the right provider to have these conversations with.

The episode also explores a question many MBC patients wrestle with: is vaginal estrogen safe when your cancer is estrogen receptor positive? Podcast team member and retired OB-GYN Dr. Ellen Landsberger weighs in with the latest clinical evidence, including findings from a 2025 systematic review published in the American Journal of Obstetrics and Gynecology, offering cautious reassurance along with practical guidance on recommended formulations.

Whether you are newly navigating these symptoms or have been managing them for years, this episode reminds you that you are not alone, that options exist, and that talking about it is the first step.

Thanks for listening. If you enjoyed the episode, subscribe and leave a review — it really helps. Follow us on social media @livefromstage4 and visit our website at www.livefromstage4.org for show notes and links.

 Your support helps us continue to share important stories and advocate for those living with metastatic breast cancer.

Until next time, take care and keep pushing for progress.

Transcript

SPEAKER_00 0:09

Could you of a cancer be closer than you think? Welcome to Life from Stage 4, where MBC takes center stage as we talk to experts, share inspiring stories, break down signs, and shine the spotlight on what matters most. Because when it comes down to it, the spot for us and by us is all about us.

SPEAKER_03 0:36

Hi, I'm Abigail Johnston.

SPEAKER_02 0:39

Hi, I'm Melanie Sisk.

SPEAKER_03 0:42

And we're here today to talk about symptom management. This series is called Symptom Spotlights, and we will regularly be bringing information to you on various symptoms caused by cancer or the treatments for cancer and how different patients are managing them. We learn so much from each other. What a great example of how we are stronger together.

SPEAKER_02 1:03

And we are so excited to bring this hard-won peer wisdom directly to patients. And please let us know if there is a symptom you would like us to talk about. And now let's get to it. Abigail, what symptom are we shining the spotlight on today?

SPEAKER_03 1:27

By popular demand, the vaginal symptoms caused by the lack of estrogen in our bodies as well as aging. It's been a huge adjustment for me since I was diagnosed with metastatic breast cancer in 2017 at the age of 38. Since then, I've tried a variety of things, products, interventions, etc. What about you, Melanie? Has vaginal dryness affected you personally?

SPEAKER_01 1:50

Yes, ma'am. I was diagnosed with early stage breast cancer at the age of 43. I had my surgery, the radiation, and then I was put on the intricant therapy. And of course, we know that I had side effects from that, but I didn't really experience too many vaginal symptoms on that particular medication. However, when I was diagnosed with metastatic disease at the age of 47, and then was first chemically put into menopause and then surgically put in menopause, the symptoms came on hard in the past.

SPEAKER_03 2:23

Really is amazing how surgical menopause is a little different from the natural process of aging. But some of the products and interventions I've used over the years are certainly lubrication, starting with trying to replace and replenish the lubrication inside. Lots and lots of that. Did some meditation for relaxation, certainly trying to get into the right frame of mind to be open to having physical intimacy was a big issue. Reverie is a brand of their suppositories, and they do work pretty well. It's a little pricey. So look for coupons if you're interested in trying Reverie. And I did try the Mona Lisa Touch Therapy Treatment, which never quite got approved by the FDA, which didn't actually help that much and was lots of appointments. That one probably wasn't all that effective for me. But what actually has been helping recently is a really low dose of estradiol cream that my urology oncologist gave me. I use it very sparingly, but that has actually helped both with some of the UTIs that I am getting regularly now, as well as some of the other issues in the same area. Melanie, what about you? What's worked for you?

SPEAKER_01 3:41

I'm gonna be brutally honest here and say that abstina helped a lot at first. At first, you're dealing with all the emotional aspects of having a terminal disease, and that puts pressure on your marriage, I feel like. And then of course, having painful sex on top of that, who wants to do it? And then also the drive. Anyway, so we know absence is not ideal, right? But having a partner that understands and agrees that sexual pleasure is for both parties, it does help. But definitely water-based lubricants, coconut oil, and topical lidocaine cream have made a huge difference for me. Coconut oil can be found in your local grocery store, so nobody knows what you're buying it for. So if you're worried about that, it is a little bit messy, but let's be honest, sexual intercourse can be a little messy too. And also let's not forget about the sex job or lack thereof. But that can be a whole nother conversation for us, Abigail.

SPEAKER_03 4:40

We will definitely shine a spotlight on that struggle as well. But I love how we've tried different things. So that just means that there's a lot of options out there, which is great. And we're going to share links in the show notes to many of the things that we're talking about today. But one thing that can really stump us, it stumps me regularly, is who to talk to when a pesky symptom shows up. It's not necessarily life-threatening. And I've found that my medical oncologists are not always wanting to talk about symptom management. And man, you open the can of worms and talk about private parts, and that just is a whole other thing. Watching the faces of your providers when you try to talk about embarrassing things can be a little entertaining. But in this context, what's been the best professional for you, Melanie, when you've needed help?

SPEAKER_01 5:30

For me, I felt more comfortable talking to my PCP rather than my oncologist. My oncologist is an expert on cancer, but not an expert on the sexual side effects of cancer. And to be completely honest, there's a very personal topic, can be very embarrassing to talk about. And it's not really their cup of tea. So what I did is I talked to my PCP about it. And I'd heard from another patient because this is how we do things. We share what helps us. So another patient told me about the topical lidocaine cream, made a huge difference for her. So I was like, hey, I'm gonna ask my PCP about it. So I talked to her about it. My PCP was great. She did the research, she got in touch with the GYN department and found the right strength and the right dose to prescribe me. However, I will say Medicare did not want to pay for it. I guess Medicare doesn't think that we should be having sexual intercourse. But anyway, thankfully it wasn't very expensive. So I didn't have to worry about it.

SPEAKER_03 6:30

Such a great point to bring up, not just who we're talking to, but that sometimes an intervention or a medication, if it's not covered on our insurance, that can be a little hard to get access to sometimes. So I also love, Melanie, that you brought up how often we patients talk to one another. And we do get a lot of ideas by talking to people who have been through the same situation. One of the things that I struggled a little bit with this estradiol cream was just whether or not it was safe. And so that helped, especially being ER-positive. The cancer in my body has very strong affinity for estrogen. And so really wanting to make sure that was safe. And my medical oncologist and the urology oncologist spoke to one another, gave me the green light, but added a whole lot of caveats as far as risk and things like that, which I think is something everybody should do, weighing out risk versus benefits in the whole context of our cancer treatment, not just this particular side effect. But Melanie, I think you had a little bit of a different experience involving the estradiol cream. How did that go for you?

SPEAKER_01 7:36

Yeah, so I talked to my oncologist about the estradiol cream. And she does give it to her early stage breast cancer patient, but she does not recommend it for any of her metastatic patients. But if I felt really strong about it, then I could definitely go back to her and we could have a conversation. And let's be honest, dryness is definitely not the only vaginal symptom that we suffer from. But we'll save those symptoms for a future conversation.

SPEAKER_00 8:12

I'm Victoria Goldberg. To add some medical context to what Abigail and Melanie just shared, we turn to Dr. Ellen Landsberger, a retired OBGYN, a member of our podcast team, and someone living with MBC for her take on the evidence around vaginal estrogen.

SPEAKER_04 8:32

When non-hormonal remedies fail, low-dose vaginal estrogen is considered safe and effective for treating the vaginal atrophy that occurs in women who have been treated for breast cancer, particularly those who are postmenopausal or taking aromatase inhibitors, which block any estrogen that may still be available. A systemic review and meta-analysis published in the American Journal of Spectrum Gynecology in March 2025 showed that the use of vegetable estrogens did not increase breast cancer recurrence, mortality for breast cancer, or mortality for any cause. The conclusion of this study and other similar studies is the safety of vaginal estrogen and women with bad breast cancer. Well, this includes women with metastatic breast cancer, and it's recommended after 50 years with cause after discussion with your oncologist. One recommended formulation and the one that I use is extradial vaginal inserts, 10 micrograms. You insert this every night for two weeks, and then it's followed by only twice-weekly vaginal insertion after the more frequent initiation.

SPEAKER_02 9:59

We hope you have enjoyed this conversation as much as we did and learned a little along the way.

SPEAKER_03 10:06

Please don't take any of what we've shared today as medical advice. If you have a question about a product or if an intervention is safe for you, we encourage you to engage with your team. You will find links to each of the products and the interventions we talked about today in the show notes.

SPEAKER_02 10:21

We want to hear from you. Did you enjoy today's spotlight? Is there another product that you have had success with? Is there another symptom you would like to hear us talk about? Engage with us, and you may find yourself receiving samples.

SPEAKER_03 10:38

This episode was produced by me, Abigail Johnston, and my dear friend Melanie Zisk. Until next time, be well and keep thriving.