Vulvar Cancer Awareness Forum

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Vulvar Cancer Awareness Forum

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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.

09/02/2026

IT'S THAT TIME OF THE MONTH AGAIN 🪞

First, take a deep breath, and look at this as part of your self-care routine rather than an uncomfortable task. When you're ready, begin by getting into whatever position helps you actually see everything — standing, squatting, sitting over a handheld mirror, or lying back on your bed with your legs open. Whatever feels easiest and comfortable for you.

Now take a slow look around:

✨️ Look at the area where your p***c hair grows. Notice any moles, spots, bumps, rashes, white patches, red spots, pimples, moles, lumps, or anything that just looks “new” or “off.”

✨️ Find your cl****is and check for any bumps, growths, moles, lumps, white or red raised patches, or other changes in color.

✨️ Look at your l***a majora (the outer lips). Feel for any lumps and look for moles, rashes, sores, white or red patches, or wart‑like growths.

✨️ Do the same with your l***a minora (the inner lips).

✨️ Then check your perineum — that little space between the va**na and the a**s. Look for bumps, rashes, sores, or anything unusual.

And here’s the big thing: If you see something that doesn’t look right, don’t ignore it. Even tiny changes matter. Reach out to your doctor and get it checked. Vulvar cancer is very treatable when it’s caught early.

There’s no screening test for v***ar cancer — the only way to know for sure is with a biopsy. That’s why these self‑checks are so important.

Sharing this helps other women learn how to check their v***as too — and that knowledge can truly save lives.

08/14/2026

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.

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08/12/2026

“𝑨𝒍𝒕𝒉𝒐𝒖𝒈𝒉 𝒊𝒏 𝒓𝒆𝒎𝒊𝒔𝒔𝒊𝒐𝒏, 𝒄𝒂𝒏𝒄𝒆𝒓 𝒔𝒕𝒊𝒍𝒍 𝒉𝒂𝒔 𝒊𝒕𝒔 𝒑𝒍𝒂𝒄𝒆 𝒊𝒏 𝒎𝒚 𝒍𝒊𝒇𝒆, 𝒃𝒖𝒕 𝑰 𝒂𝒎 𝒖𝒔𝒊𝒏𝒈 𝒊𝒕 𝒇𝒐𝒓 𝒈𝒐𝒐𝒅. 𝑰 𝒅𝒐 𝒏𝒐𝒕 𝒘𝒂𝒏𝒕 𝒎𝒚 𝒍𝒊𝒇𝒆 𝒕𝒐 𝒃𝒆 𝒅𝒆𝒇𝒊𝒏𝒆𝒅 𝒃𝒚 𝒄𝒂𝒏𝒄𝒆𝒓. 𝑰 𝒉𝒂𝒗𝒆 𝒆𝒏𝒅𝒖𝒓𝒆𝒅 𝒂 𝒍𝒐𝒕 𝒐𝒇 𝒑𝒂𝒊𝒏 𝒊𝒏 𝒕𝒉𝒆 𝒑𝒂𝒔𝒕 𝒇𝒐𝒖𝒓 𝒚𝒆𝒂𝒓𝒔, 𝒃𝒖𝒕 𝑰 𝒓𝒆𝒇𝒖𝒔𝒆 𝒕𝒐 𝒍𝒆𝒕 𝒊𝒕 𝒔𝒍𝒐𝒘 𝒎𝒆 𝒅𝒐𝒘𝒏 𝒐𝒓 𝒎𝒂𝒌𝒆 𝒎𝒆 𝒖𝒑𝒔𝒆𝒕.” - 𝑨𝒏𝒏 𝑯𝒆𝒔𝒍𝒊𝒏

In the spring of 2021, Ann Heslin was diagnosed with HPV-independent v***ar cancer. “I developed a skin condition called lichen sclerosus, which in rare instances can form squamous cell carcinoma,” Ann explains. “I was in enormous pain. It was difficult to walk while trying to work and take care of my mother,” she said. “Unfortunately, it spread into my lymph nodes which resulted in a stage 3b diagnosis.” Ann’s treatment included six weeks of chemotherapy and radiation, at the start of which she entered menopause at just 43 years old. “It was a terrible year,” she recalls, “but I was declared in remission in October 2021.”

For over three years, Ann remained in remission until Christmas Eve of 2024. “I sat down in a chair, and it was painful. I knew in my heart that my cancer had returned,” she says. She had a couple of biopsies, which confirmed that her lichen sclerosus had caused another tumor to form. “I was devastated. Even though I knew that I had done everything possible to prevent this recurrence, I still felt as though I could have done more. Thankfully, I have an amazing family, devoted friends, and an excellent oncology team.”

It is her loved ones whom Ann credits with helping her get through this four-year period which, on top of her cancer journey, also included six bouts with COVID. “My family and friends have been there right alongside me from day one of my diagnosis. I am fortunate to have my mother living with me, and my sister, brother-in-law, and nephew are next door,” she says. “They have been the key to my recovery and have supported me throughout this long journey.”

In March of 2025, Ann underwent surgery, and today she is again in remission. “I learned after this recurrence to give myself the grace and space to heal mentally and physically,” she shares. “Following both diagnoses, I now take much better care of myself. Having cancer is like having a full-time job. There are so many appointments, so many things to remember, and so many ups and downs in the journey. I have navigated the challenges of a diagnosis by simply taking each day as its own.”

Ann’s advice to those going through a cancer diagnosis is “to know that a cancer journey is a marathon. There are going to be great days and challenging days. Don’t be afraid or embarrassed to ask for help. Even though it is extremely difficult to see yourself thriving when you are sitting in a chemo chair or lying on the radiation table, you will get there.” Above all, Ann is sharing her story to help others facing a similar diagnosis: “There is nothing to be ashamed or embarrassed about, since there is a stigma associated with gynecological cancer because many are HPV-related. If you have symptoms, please do not wait to address them with your physician. It might not be anything, but cancer is persistent. Early detection is key.”

Article Credit: Stand Up To Cancer

08/12/2026

We hear countless stories from people who were overlooked, unheard, or dismissed in medical settings. These experiences are not “overreactions.” They are signals. And learning to recognize them is part of protecting your health and reclaiming your power.

Here are some red flags to pay attention to:

🚩 Dismisses & Minimizes Symptoms

When a provider responds with “that’s normal,” “it’s just stress,” or “you’re fine” without asking deeper questions or performing an exam, that’s not care. Your lived experience matters. Your pain matters.

🚩 Skips essential physical exams

A provider cannot diagnose what they never examined. If you report symptoms and the appropriate physical exam is not performed, that’s a gap in care, and it’s valid to question it.

🚩 Refuses or Delays Necessary Testing

You deserve clarity. If you ask about imaging, labs, or biopsies and the provider dismisses the need without offering a clear medical rationale, that’s a concern. You’re allowed to advocate for further evaluation.

🚩 Rushes, Interrups or Talks Over You

Your appointment is not a race. If you can’t finish a sentence or your questions are met with impatience, that’s not patient‑centered care.

🚩 Makes you Feel Ashamed, Judged, or Uncomfortable

Healthcare should never make you feel small. Comments that are dismissive, condescending, or rooted in bias, especially around pain, sexual health, weight, trauma, or identity, are unacceptable.

🚩 Doesn't Explain Your Diagnosis or Treatment Plan

You should leave your appointment with clarity, not confusion. If you’re handed a plan without explanation, that’s a communication failure, not a personal one.

🚩 They Discourage Second Opinions

A confident, ethical provider welcomes collaboration. If a provider reacts defensively when you seek another perspective, that’s a red flag.

🚩 They Ignore your History or Lived Experience

Your story is data. Your symptoms are data. Your intuition is data.When a provider dismisses what you know about your own body, that’s a sign to pause and reassess.

You deserve thorough, compassionate, evidence based care, and you deserve to be heard.

NEVER BE AFRAID TO ADVOCATE FOR YOURSELF!

08/10/2026

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🚫 𝗦𝗖𝗔𝗠 𝗔𝗟𝗘𝗥𝗧

Lately, individuals have been posting comments on some of our content claiming to sell “v***ar cancer awareness t‑shirts.” They tag followers, make it look sponsored, and pretend the proceeds support our forum or v***ar cancer patients.

𝙏𝙝𝙞𝙨 𝙞𝙨 𝙖 𝙘𝙤𝙢𝙢𝙤𝙣 𝙨𝙘𝙖𝙢 𝙩𝙖𝙧𝙜𝙚𝙩𝙞𝙣𝙜 𝙘𝙖𝙣𝙘𝙚𝙧 𝙘𝙤𝙢𝙢𝙪𝙣𝙞𝙩𝙞𝙚𝙨 𝙖𝙣𝙙 𝙣𝙤𝙣-𝙥𝙧𝙤𝙛𝙞𝙩𝙨. In many cases, the goal is simply to profit off your compassion — and in some situations, to phish for your payment information.

🔒 𝗢𝗨𝗥 𝗢𝗙𝗙𝗜𝗖𝗜𝗔𝗟 𝗣𝗢𝗟𝗜𝗖𝗬

We want to be absolutely clear:

• We NEVER advertise merchandise in the comment section.

• We NEVER post fundraising sales from personal profiles.

• We only announce legitimate t‑shirt fundraisers through official posts made directly by our page: Vulvar Cancer Awareness Forum.

If you don’t see our page name at the top of the post, it’s not us.

👀 𝗪𝗵𝘆 𝗬𝗼𝘂 𝗠𝗮𝘆 𝗦𝘁𝗶𝗹𝗹 𝗦𝗲𝗲 𝗧𝗵𝗲𝘀𝗲 𝗖𝗼𝗺𝗺𝗲𝗻𝘁𝘀

We actively monitor, delete, and ban accounts posting these scams. However, due to the high volume of interaction on our page, some comments may appear before we catch them.
Your vigilance helps protect our community.

🛡️ 𝗛𝗼𝘄 𝘁𝗼 𝗦𝘁𝗮𝘆 𝗦𝗮𝗳𝗲

• Ignore any t‑shirt promotions posted in comments.

• Do not click links or provide payment information.

• Report suspicious comments when you see them.

• Always check that any fundraiser is posted directly by Vulvar Cancer Awareness Forum.

📌 𝗘𝘅𝗮𝗺𝗽𝗹𝗲 𝗶𝗻 𝘁𝗵𝗲 𝗖𝗼𝗺𝗺𝗲𝗻𝘁𝘀

We’ve added an example in the comment section so you can see what these scam posts typically look like.

Thank you for helping us keep this community safe, informed, and protected. 💜

08/05/2026

✨️ Question of the Day ✨️

08/05/2026

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. Always insist on a biopsy because it's the only way to diagnose or rule out v***ar cancer.

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

08/03/2026

𝗩𝘂𝗹𝘃𝗮𝗿 𝗰𝗮𝗻𝗰𝗲𝗿 𝗶𝘀 𝗻𝗼𝘁 𝗿𝗮𝗿𝗲 — 𝘁𝗶𝗺𝗲𝗹𝘆 𝗱𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀 𝗶𝘀.

Research shows that the average time from first symptoms to a v***ar cancer diagnosis ranges from 1.4 to 3.7 years. This delay is not due to the cancer itself, but due to systemic gaps in v***ar health awareness, clinical training, and diagnostic practice.

Vulvar cancer frequently is misdiagnosed with benign conditions such as yeast infections, dermatitis, etc. Not only that, symptoms are often dismissed by clinicians without any workup. Because of this, many patients often go months or years without a biopsy — the only definitive way to diagnose or rule out v***ar cancer.

This pattern is consistent across age groups. Younger patients are often told they are “too young” for v***ar cancer, while older patients may be treated repeatedly for presumed infections. In both cases, the absence of a standardized diagnostic approach contributes directly to delayed detection.

𝗛𝗢𝗪𝗘𝗩𝗘𝗥, 𝗧𝗛𝗜𝗦 𝗗𝗘𝗟𝗔𝗬 𝗜𝗦 𝗣𝗥𝗘𝗩𝗘𝗡𝗧𝗔𝗕𝗟𝗘‼️

A straightforward protocol can change outcomes:
When a patient presents with symptoms consistent with v***ar cancer — regardless of age or risk factors — perform a simple biopsy. It is fast, accessible, and essential for accurate diagnosis.

Additionally, clinicians need updated and reinforced training to recognize the signs and symptoms of v***ar cancer so that concerning lesions are not overlooked or misclassified.

Early diagnosis is achievable. The system just needs to be aligned with what the evidence already shows.

In breast health, the standard is clear: when someone has symptoms of breast cancer and a mammogram shows something suspicious, the protocol is to perform a biopsy. This ensures early and accurate diagnosis.

We need the same evidence‑based approach for v***ar cancer.

Because of what I went through, I am now working to change this. I am actively advocating for standardized protocols that support earlier diagnosis, even though there is significant pushback from decision‑makers. I will not stop until the goal has been achieved. And the goal is simple: align v***ar cancer care with the same diagnostic rigor used in other cancers.

- S. Yohanna Hoehler
(Vulvar Cancer Awareness Forum - Founder)

07/30/2026

𝗞𝗻𝗼𝘄 𝘁𝗵𝗲 𝗧𝘆𝗽𝗲𝘀 - 𝗨𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱 𝘁𝗵𝗲 𝗥𝗶𝘀𝗸𝘀.

Vulvar cancer is not one-size-fits-all. There are multiple types, each with different characteristics, behaviors, and risks — and awareness can save lives.

This graphic highlights 6 types of v***ar cancer, including the most common and the more rare forms. Knowing what they are helps patients, caregivers, and clinicians recognize symptoms earlier and advocate for timely care.

✨ Awareness matters
✨️ Education empowers.
✨️ Early detection saves lives.

We encourage you to:

• Learn the types
• Learn the Symtpoms
• Listen to your body
• Speak up about changes
• Share this post to help spread awareness

Together, we can break the silence, reduce delays in diagnosis, and support those impacted by v***ar cancer.

Address

P. O. Box 3316
Bethlehem, PA
18017

Telephone

+14848930360

Website

http://www.vulvarcancerawareness.com/

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