Introduction
When I (Jaclyn) was diagnosed with vulvar lichen sclerosus (VLS), my doctor quickly rattled off some VLS facts to me: it was autoimmune, potentially genetic, and increased my chances of developing vulvar cancer. I won’t lie; this caused a paralyzing fear deep in my bones. Cancer… I was terrified; for some reason, it felt like I walked out of there with a death sentence. Perhaps my strong reaction was in part because my doctor did not contextualize the link between vulvar lichen sclerosus and vulvar cancer. If I had a little more information about the risk and how I could reduce the risk, I might have felt a little safer and not spiraled in fear for months.
In today’s post, we want to provide some education about VLS and vulvar cancer–what the connection is, what the risks are, and what things we can do to reduce risk and take preventative action.
TW: Mentions of vulvar lichen sclerosus and vulvar cancer. If this feels unsafe/unsupportive for your journey, please click back another time.
*This post is evidence-based; I draw on the medical literature to share what you need to know about vulvar lichen sclerosus and vulvar cancer. Importantly, what I share is my interpretation of the science and data.
**The information contained in this blog post is up-to-date at the time of publication.
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What is Vulvar Cancer
Vulvar cancer is rare, accounting for 0.3% of new cancer cases in the US. It’s often squamous cell carcinoma, commonly found in people aged 65 to 74. Risk factors include age, HPV infection, smoking, vulvar inflammatory conditions, past pelvic radiation, and weakened immune system. Signs of vulvar cancer include nodules (abnormal tissue growth), ulcers or fissures that do not heal after a few weeks, and any new growth on the vulva (Capria et al., 2021; Lee and Fisher, 2018). Diagnosis involves a tissue biopsy, and treatment mainly consists of surgical removal. Depending on the cancer stage, additional treatments like chemotherapy and radiation may be recommended (Capria et al., 2021).
There are different types of vulvar cancer, including squamous cell carcinoma, basal cell carcinoma, vulvar melanoma, and more.
Squamous cell carcinoma is the most common type of vulvar cancer. It often starts from precancerous lesions called vulvar intraepithelial neoplasia (VIN), which can be divided into HPV-related (uVIN) and non-HPV-related (dVIN) types (Capria et al., 2021).
What is the Risk of Vulvar Cancer with Vulvar Lichen Sclerosus
Vulvar lichen sclerosus is associated with an increased risk of developing vulvar cancer. Importantly, the risk is low, only slightly higher than population risk. The general population risk is approximately 0.5% (Viera-Baptista et al., 2022). In the medical literature, you may see anything from 2-6%, give or take (Lee and Fischer, 2018; Viera-Baptista et al., 2022).
That said, an increased risk can still be quite scary. However, after reviewing the literature, we hope that we can calm some of those nerves, as there are things you can do to reduce the risk percentage.
What Does the Science Say? Reducing Risk
In a study by Dr. Lee, Bradford, and Fischer (2015) involving 507 individuals with vulvar Lichen Sclerosus over 6 years:
- 70.4% who consistently used steroid therapy had no cases of vulvar cancer.
- 29.6% who were inconsistent or didn’t use steroids had 7 cases of vulvar cancer.
This highlights that following steroid treatment as advised by doctors may prevent vulvar cancer in individuals with Lichen Sclerosus. Regular steroid use seems to play a crucial role in reducing the risk of developing vulvar cancer in these patients.
More recently, Viera-Baptista et al. (2022) conducted a systematic review of the risk of developing vulvar cancer from VLS. A systematic review is like a detailed summary of all the existing research on a specific topic. It involves looking at many studies, analyzing their results, and drawing overall conclusions from all the gathered information. By combining the results of multiple studies, a systematic review aims to provide a comprehensive and reliable overview of what is currently known about a particular subject.
So, what did they find? Did their conclusions contradict the Lee, Bradford, and Fischer (2015) study?
The review showed people with vulvar lichen sclerosus have a higher chance of developing vulvar cancer, especially with certain conditions like dVIN and as they get older. In people developing vulvar cancer for the first time, the risk was 2.2%; the risk for people who previously had or currently have vulvar cancer is 4% (ibid).
They highlight that using very strong steroid creams can help lower this risk.
Therefore, they note, it’s important for people with VLS to receive treatment and ongoing check-ups throughout their lives to monitor and manage any potential risks of developing vulvar cancer.
What Causes Vulvar Lichen Sclerosus to Turn Into Cancer?
As our understanding of vulvar lichen sclerosus and how it advances improves, we are gaining more insights into its potential link to the development of vulvar cancer.
A paper by De Luca et al. (2023) identified that in later stages, as LS progresses and goes untreated, oxidative stress, which is an imbalance between the production and distribution of oxygen cells in the skin can occur. In addition, tumor-suppressing genes, which are genes that regulate cell division, become downregulated (i.e., they become fewer and less active). Because these genes are no longer being regulated properly, some cells can grow uncontrollably. The oxidative stress and reduction of tumor-suppressing genes is what can, in some cases, lead to vulvar cancer. Viera-Baptista et al. (2022) identify similar genes at play in the development of vulvar cancer.
The Importance of Using Steroid Treatment
This evidence suggests steroids may reduce the risk of vulvar cancer. To date, only steroids as a treatment option seem to support this.
But how do steroids reduce the vulvar cancer risk? Well, truthfully, we do not fully understand. My thought process is that since there is a significant amount of inflammation and cellular chaos in the later stages of VLS, and since steroids have been shown to reduce inflammation and slow the progression of VLS significantly, they may be able to halt progression to vulvar cancer. However, we need more research on this.
In addition to using topical corticosteroids, it is important to attend follow-up appointments and perform a monthly vulva check (reviewed in the next two sections). For folks who cannot or choose not to use steroids, these next two sections are important.
The Importance of Follow-Up Appointments
It is important to show up for your follow-up appointments. How often you follow up with your healthcare provider can depend on where you are located worldwide, the clinic in question, and your particular case. Typically, you will see your healthcare provider more frequently in the beginning until your VLS is well managed, and then you pivot over to a once-per-year follow-up appointment.
Follow-up appointments are important to track your VLS’s progress and address any concerns you may have. They should also include a clinical examination, where your healthcare provider examines the skin of your vulva. During this exam, they will also check for any potential signs of cancer. If they suspect anything at all, they will do a biopsy.
Having a trained set of eyes examine your vulva and tell you everything looks good may provide you with some relief.
If there are signs of cancer, they will be caught early if you regularly attend follow-up appointments.
The Importance of Doing a Monthly Vulva Check
Early detection and diagnosis are crucial for every health condition, and vulvar cancer is no exception. While healthcare providers can examine our vulvas at appointments, we can do our own vulva checks 1x per month to help stay on top of things and be proactive.
Ideally, you perform a vulva check once a month (get LSSN’s vulva check bundle here).
With respect to vulvar cancer, these are the following signs to look out for:
- Nodules (growth of abnormal tissue)
- Persistent fissures that will not heal (small tears)
- New hyperkeratotic plaques (a bump or patch of thickened skin)
- Ulcers that will not heal after a couple of weeks.
- Any growth on the vulva (they may be black, brown, red, white, and even pink, hard to the touch and asymmetrical).
(Lee and Fischer, 2018).
By checking your vulva monthly, you can spot any unusual signs. If you notice anything concerning, contact your specialist immediately and share any changes you’ve observed. Understanding what’s regular for your vulva is essential since they vary in appearance—knowing your baseline helps you recognize any important changes that may need medical attention.
Give Yourself Grace
This is a topic that can cause a lot of anxiety and worry; I experienced both at the beginning of my journey. Learning that steroids decreased my risk almost back down to baseline helped me feel a lot better, but it can take time for the anxiety and fear to fade slowly. Be gentle with yourself; these things take time and are not easy.
Conclusion on Vulvar Lichen Sclerosus and Vulvar Cancer
In sum, we reviewed what vulvar cancer is and the association between vulvar lichen sclerosus and vulvar cancer. We noted the scientific literature holds a higher than average risk for developing vulvar cancer with VLS and that the risk can be reduced by proper and consistent application of topical corticosteroids. Finally, it is important to attend follow-up appointments and do a monthly vulva check to be proactive in your health and wellness.
Let us know your thoughts in the comments below.
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Reach Out To Me
Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content, I can be reached via:
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For a more detailed list of free and paid support resources, check out my LS resources page here.
References
References
Bleeker, M. C. G., Visser, P. J., Overbeek, L. I. H., van Beurden, M., & Berkhof, J. (2016). Lichen Sclerosus: Incidence and Risk of Vulvar Squamous Cell Carcinoma. Cancer Epidemiology Biomarkers & Prevention, 25(8), 1224–1230. https://doi.org/10.1158/1055-9965.epi-16-0019
Capria, A., Tahir, N., & Fatehi, M. (2021). Vulva Cancer. PubMed; StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK567798/
De Luca, D. A., Papara, C., Vorobyev, A., Staiger, H., Bieber, K., Thaçi, D., & Ludwig, R. J. (2023). Lichen sclerosus: The 2023 update. Frontiers in Medicine, 10, 1106318. https://doi.org/10.3389/fmed.2023.1106318
Lee, A., Bradford, J., & Fischer, G. (2015). Long-term Management of Adult Vulvar Lichen Sclerosus. JAMA Dermatology, 151(10), 1061. https://doi.org/10.1001/jamadermatol.2015.0643
Lee, A., & Fischer, G. (2018). Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists. American Journal of Clinical Dermatology, 19(5), 695–706. https://doi.org/10.1007/s40257-018-0364-7
Vieira-Baptista P, Pérez-López FR, López-Baena MT, Stockdale CK, Preti M, Bornstein J. Risk of Development of Vulvar Cancer in Women With Lichen Sclerosus or Lichen Planus: A Systematic Review. J Low Genit Tract Dis. 2022 Jul 1;26(3):250-257. doi: 10.1097/LGT.0000000000000673. Epub 2022 Mar 11. PMID: 35285455.
Thank you Jaclyn. Very informative and reassuring. And encouraging.