Vulvar Cancer Awareness Forum

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Vulvar Cancer Awareness Forum

If you or someone you care about is struggling to cope with Vulvar Cancer, Vulvar Cancer Awareness Forum is ready to help.

We are dedicated to raising awareness of vulvar cancer, educating the public, advocating for research and better treatments, and offering hands-on support to patients and families. Since 2018, we’ve succeeded in helping countless individuals navigate and overcome challenging situations. It is our mission to raise awareness for this little talked about cancer as well as educate on it. We also actively advocate for change and advancements in Vulvar Cancer treatments, early detection, development of screenings, etc. Besides that, we advocate directly on behalf of patients who are having difficulties going through the diagnostic stages, and those who have already been diagnosed. Knowing there is a lack of support for Vulvar Cancer Patients which often leads to feelings of isolation and loneliness, we offer three private support groups on Facebook, one for Vulvar Cancer, VIN (pre-cancer), and a family and friends support group. Our Support Group members are kind, patient, and open-minded with the experience, knowledge, and tools to help you cope with what you are going through. We all must walk our own paths through life, but we don’t have to do it alone. We’re here to help, all you have to do is reach out. On February, 1, 2021, we successfully launched our Vulvar Cancer Care Box program which is the first of its kind. The care boxes are designed to let patients know that they are not alone and provide them with some items that are needed, and to encourage them. The Vulvar Cancer Community may be largely overlooked, but we are changing that one step and one person at the time.

03/16/2026

QUESTION OF THE DAY:

What encouragement or advice would you offer to someone newly diagnosed with Vulvar Cancer or VIN?

03/12/2026

Video Credit:

Persistent v***ar burning, itching or pain are not always a UTI or yeast infection. If you have chronic v***ar discomfort, you deserve more than a guess.

If someone has v***ar burning, itching, discomfort, or visual sunptoms, they need an exam and a biopsy. Not one prescription after another and dismissal.

📌 Vulvar Cancer and v***ar precancer can be real possibilities.

🔎 A v***ar exam and a biopsy are not optional—they are essential.

Tag a friend who needs to hear this. And if you’ve been dismissed—you’re not crazy. You’re not alone.

🚨 This is why we need clinicians who listen, look, and know what they’re looking for.

🤟🏼 PCPs - don’t be afraid to refer to a GYN

Drop a 🔥 if you’ve learned something and send this to your friend who needs to know!

***arcancer

03/11/2026

We are deeply saddened to share the passing of our beloved Ashley Forrester.

Ashley walked through her battle with v***ar cancer with extraordinary strength. And when she learned her diagnosis had become terminal, she embraced that reality with a grace and courage that left a lasting imprint on everyone who knew her.

Doctors told her she had one to three months left. But instead of sinking into depression, Ashley made a powerful choice: she chose joy. She chose peace. She chose to spend her final chapter in what she lovingly called her “Happy Place”...the U.S. Virgin Islands, with her brother and sister‑in‑law. So Ashley and her daughter, Grace, boarded a plane and began their final journey together.

In those islands, Ashley became a living testament to what it means to savor every day. She filled her moments with laughter, sunshine, and love, not fear. She courageously and boldly began to chronicle her final journey on her page, and in doing so, she became a beacon of hope to others, defying every expectation by far surpassing the time she was given.

Ashley lived seven more months, wrapped in warmth, surrounded by beauty, and held by the people she loved. It was that love, that joy, and that intentional choosing of life that carried her further than anyone imagined.

If Ashley taught us anything, it is this: To face even the hardest realities with dignity. To remove negativity and embrace what truly matters. To live each day fully, so that when our final breath comes, our life has been rich, meaningful, and whole.

Please keep her daughter Grace, her entire family, and all who loved her in your thoughts and prayers as they learn to navigate life without this radiant light.

Rest in peace, Ashley. Your courage, joy, and spirit will continue to inspire us, and we will continue our work and mission in your honor.

Your legacy will live on! 🕊💜🙏🏼

03/10/2026

VULVAR CANCER: KNOW THE SIGNS - KNOW THE RISKS

Vulvar cancer is often underdiagnosed and diagnosed late, but early detection saves lives. Too many symptoms are ignored or dismissed — let’s change that.

✨ COMMON SYMPTOMS ✨

• Persistent itching or burning of the v***a
• Pain, tenderness, or soreness
• A lump, bump, wart-like growth, or thickened skin
• Moles
• Skin color changes (lighter, darker, red, or inflamed areas)
• Open sores or ulcers that don’t heal
• Bleeding or discharge not related to your period
• Pain during urination or interc*urse

⚠️ RISK FACTORS ⚠️

• HPV (Human Papillomavirus)
• Smoking
• Lichen Sclerosus
• Human Immunodeficiency Virus (HIV)
• Increasing age (but younger women are affected too)
• Vulvar Pre-Cancer (VIN)

🩺 Listen to your body.

If something doesn’t feel right, advocate for yourself and see a healthcare provider. Vulvar symptoms are never “normal” when they persist.

Please share this post to help educate, empower, and save lives. 💜💪🏽

03/04/2026

Thank you! 💜✨️

03/03/2026

It’s that time of the month again to check in with your body. 💜

Not sure how? That’s okay. Here’s a simple way to get to know your v***a and notice any changes.

✨ Get comfortable.

Stand, squat, sit over a handheld mirror, or lie down with your legs open — whatever helps you see clearly. Relax and Breathe and view this as part of self-care.

✨ Start with the hair-bearing area.

Take a look for anything that seems new or different, like spots, bumps, rashes, redness, lumps, moles, or sores.

✨ Find your cl****is.

Check for any changes in color, texture, or the appearance of bumps, moles, white or red raised lesions, or any other type of growths.

✨ Look at your outer lips (l***a majora).
Gently look and again look and feel for anything unusual — bumps, lumps, irritation, moles, red or white raised lesions, wart or cauliflower like growths, sores, discolored areas, or any other changes in the skin.

✨ Check your inner lips (l***a minora).

Again, notice anything that doesn’t feel or look like your normal, and repeat the visual check for anything unusual.

✨ Don’t forget the area between the va**na and a**s (perineum).

Look for irritation, bumps, or changes in the skin here too.

🚨 If something doesn’t look or feel right, trust yourself.

Even small changes are worth mentioning to your doctor. Vulvar cancer is very treatable when found early.

💡 A quick reminder:

There’s no routine screening for v***ar cancer, and the only way to know for sure is through a biopsy — which is why knowing your own body matters.

💌 Please share this post to help spread awareness.

Early detection saves lives. 💜💪🏽

02/28/2026

(Not so) 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆: 𝗦𝗵𝗶𝗻𝗶𝗻𝗴 𝗮 𝗟𝗶𝗴𝗵𝘁 𝗼𝗻 𝗮𝗻𝗱 “𝗥𝗮𝗿𝗲” 𝗩𝘂𝗹𝘃𝗮𝗿 𝗖𝗼𝗻𝗱𝗶𝘁𝗶𝗼𝗻𝘀

Today, on Rare Disease Day, we honor every woman navigating v***ar cancer, v***ar pre‑cancers, and Lichen Sclerosus — conditions that textbooks and outdated research still label as rare. But real‑life conversations, patient communities, and lived experience tell a very different story.

For decades, the statistics used to categorize these diseases as rare have been based on research that is now severely outdated. When it takes an average of 3–5 years for many patients to receive a correct diagnosis, it’s no surprise that the annual numbers of documented cases remain artificially low. These numbers do not reflect the true number of women suffering — they reflect how long women are dismissed, misdiagnosed, or left without answers.

In our work and in our community, we see every day that these diseases are not rare — they are rarely diagnosed in a timely manner. And that delay has consequences: delayed treatment, more advanced disease at diagnosis, more invasive surgeries, and preventable loss of life.

At the same time, we want to acknowledge that within the spectrum of v***ar cancers, there are a few forms that are truly rare, including:

• Extramammary Paget’s Disease

• Mucosal Melanoma

• Epithelioid Sarcoma

These conditions deserve visibility, research, and compassionate awareness just as much as the more commonly encountered v***ar diseases that are chronically under‑recognized.

Today, we stand with every woman whose symptoms were overlooked, whose pain was minimized, and whose diagnosis came far too late. And we continue our mission to change the narrative, challenge outdated assumptions, and push for earlier recognition, better education, and the awareness every woman deserves.

𝗥𝗮𝗿𝗲 𝗶𝘀 𝗻𝗼𝘁 𝗮𝗹𝘄𝗮𝘆𝘀 𝗿𝗮𝗿𝗲 — 𝘀𝗼𝗺𝗲𝘁𝗶𝗺𝗲𝘀 𝗶𝘁’𝘀 𝗷𝘂𝘀𝘁 𝗿𝗮𝗿𝗲𝗹𝘆 𝘁𝗮𝗹𝗸𝗲𝗱 𝗮𝗯𝗼𝘂𝘁. 𝗔𝗻𝗱 𝘁𝗼𝗱𝗮𝘆, 𝘄𝗲’𝗿𝗲 𝘁𝗮𝗹𝗸𝗶𝗻𝗴 𝗮𝗯𝗼𝘂𝘁 𝗶𝘁.

02/26/2026

Thank you HPV Cancers Alliance! 💜

02/26/2026

Vulvar cancer is often labeled as a “rare” condition, but that label is misleading—and harmful. While it represents a smaller percentage of all gynecologic cancers, it is far more common than most people realize. The problem isn’t rarity. The problem is recognition.

One of the greatest challenges surrounding v***ar cancer is the consistent delay in diagnosis. These delays stem from multiple systemic failures: a widespread lack of awareness among both patients and healthcare providers, frequent misdiagnoses, dismissal of symptoms, and the stigma or embarrassment many feel when discussing v***ar health. Far too often, the v***a is simply not examined, even during routine gynecologic visits.

These delays carry serious consequences. Early detection dramatically improves treatment options and outcomes, yet studies show that the average time to diagnosis ranges from 1.4 to 3.7 years—and many patients wait even longer. During this time, a cancer that could have been caught early continues to progress, leading to more invasive treatments, life-altering surgeries, and preventable loss of life.

So while v***ar cancer is perceived as rare, the reality is that it is rarely diagnosed in a timely manner.

THAT DISTINCTION MATTERS!

The American Cancer Society estimates that 7,480 people in the United States will be diagnosed with v***ar cancer in 2025, but the true number of individuals currently living with undiagnosed disease is significantly higher. Many simply don’t know they have it yet—and won’t for years—because of inadequate protocols, insufficient education, and a system that allows patients to fall through the cracks.

Raising awareness, improving education, and normalizing conversations about v***ar health are essential steps toward changing this reality. When patients and providers know what to look for—and when the v***a is examined with the same seriousness as any other part of the body—v***ar cancer can be detected earlier, treated more effectively, and prevented from taking so many lives unnecessarily.

Please Like 👍🏽 Share 💌 Comment 💬

02/26/2026

Let’s Talk About Cancer PTSD.

A cancer diagnosis doesn’t end when treatment ends. Even in remission, many survivors carry invisible wounds—fear, anxiety, hypervigilance, medical trauma, and the emotional aftershocks of everything they’ve endured. This is often called cancer‑related PTSD, and it is far more common than people realize.

Cancer changes your body, but it also changes your mind, your sense of safety, and the way you move through the world. Scans, symptoms, anniversaries, and even certain smells or places can trigger overwhelming memories. None of this means you’re “weak.” It means you’re human.

If you’re struggling, please know this:

• You are not alone.
• Your feelings are valid.
• Your mental health matters just as much as your physical health.

Reaching out for help—whether through therapy, counseling, support groups, or talking with someone you trust—is an act of strength, not shame. Healing is not just about surviving cancer; it’s about reclaiming your peace, your joy, and your sense of self.

💜 You deserve care.
💜 You deserve support.
💜 You deserve to feel whole again.

If you find yourself struggling with the symptoms listed on the graphic, please reach out for help today. 🙏🏾

02/26/2026

𝗩𝗨𝗟𝗩𝗔𝗥 𝗖𝗔𝗡𝗖𝗘𝗥 𝗥𝗜𝗦𝗞 𝗙𝗔𝗖𝗧𝗢𝗥𝗦: 𝗪𝗛𝗔𝗧 𝗪𝗘 𝗞𝗡𝗢𝗪 𝗔𝗡𝗗 𝗪𝗛𝗔𝗧 𝗪𝗘 𝗦𝗧𝗜𝗟𝗟 𝗡𝗘𝗘𝗗 𝗧𝗢 𝗟𝗘𝗔𝗥𝗡

The currently known and documented risk factors for v***ar cancer come from research that, in many cases, is decades old. Based on the existing literature, the following factors are recognized:

𝗗𝗼𝗰𝘂𝗺𝗲𝗻𝘁𝗲𝗱 𝗥𝗶𝘀𝗸 𝗙𝗮𝗰𝘁𝗼𝗿𝘀:

• Human Papillomavirus (HPV)

• Smoking

• Vulvar Intraepithelial Neoplasia (VIN & dVIN)

• Lichen Sclerosus

• Lichen Pla**s

• Increased Age

• Human Immunodeficiency Virus (HIV)

These factors are important, but they do not tell the full story.

𝗔 𝗖𝗿𝗶𝘁𝗶𝗰𝗮𝗹 𝗚𝗮𝗽 𝗶𝗻 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵

Much of what we “know” about v***ar cancer risk is built on outdated, limited, and often incomplete research. Many studies are small, decades old, or focused on narrow populations. As a result, the current list of risk factors likely represents only a partial picture.

𝗪𝗵𝗮𝘁 𝗔𝗱𝘃𝗼𝗰𝗮𝘁𝗲𝘀, 𝗣𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗮𝗻𝗱 𝗘𝘅𝗽𝗲𝗿𝘁𝘀 𝗕𝗲𝗹𝗶𝗲𝘃𝗲

There is growing belief — supported by patient experiences, clinical observations, and emerging patterns — that additional risk factors exist. However, without modern, large‑scale, and inclusive research, these cannot yet be formally recognized or added to medical guidelines.

𝗪𝗵𝘆 𝗧𝗵𝗶𝘀 𝗠𝗮𝘁𝘁𝗲𝗿𝘀

Without updated research:

• Patients are left without accurate information

• Clinicians may overlook important risks

• Early detection opportunities are missed

• Entire communities remain under‑educated and under‑served

𝗧𝗵𝗲 𝗕𝗼𝘁𝘁𝗼𝗺 𝗟𝗶𝗻𝗲

The risk factors we list today are real, but they are not complete. New, robust research is desperately needed to fully understand what puts someone at risk for v***ar cancer — and to ensure that prevention, diagnosis, and treatment finally catch up to the realities patients are facing.

02/26/2026

Vulvar cancer surgeries are not simple procedures — they are life‑altering in every possible way.

Every procedure—from the least invasive to the most extensive—carries physical, emotional, and deeply personal impacts that many people never see. While each surgery has a different level of complexity, all of them require immense strength, resilience, and support.

These surgeries change how a person moves, sits, walks, rests, and relates to their own body. They affect intimacy, identity, confidence, and daily functioning. And yet, the immense impact of these procedures is so often misunderstood or minimized by others.

Recovery isn’t quick or straightforward. It can be lengthy, complex, and extremely painful, involving wound care, mobility challenges, emotional processing, and learning to navigate a new normal. Survivors aren’t just healing from surgery, they’re rebuilding their lives piece by piece, trying to navigate a new normal that no one has asked for.

To everyone who has undergone any of these surgeries: your strength is unmatched. Your courage is real. Your story matters. And you deserve to be seen, believed, and supported every step of the way. 💜

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P. O. Box 3316
Bethlehem, PA
18017

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+14848930360

Website

http://www.vulvarcancerawareness.com/

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