I Was Diagnosed With Vulvar Cancer: My Unusual Story of Gratitude - Care+Wear
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I Was Diagnosed With Vulvar Cancer: My Unusual Story of Gratitude

I was diagnosed with Vulvar cancer : my unusual story of gratitude

About the Author: Karen is a clinical psychologist who lives in Colorado. She works in private practice and as an adjunct university professor. When possible, she heads to the mountains to relax, recharge, and reconnect.

How My World Changed in an Instant

At 2 am on Labor Day 2019, I was laying on my bathroom floor writhing in agony. Full of embarrassment and resignation, I called 911. In the ER, a CT scan revealed that what I had assumed was just a nasty case of food poisoning, was actually a lovely kidney stone. I was immediately wheeled to the OR for stent-placement surgery and then admitted overnight.

During this surgery, the urologist grew concerned after noticing something “weird” (an official doctor term). He requested an in-house gynecological consult which led to a referral for a gynecological oncologist. The very next week, I was once again in the OR. This time for a biopsy and groin lymph node excision. I was diagnosed with Stage 3 Vulvar Cancer (squamous cell type).

What is Vulvar Cancer?

Typically, when I first share with someone that I have cancer of the vulva, the first response is: What? Does that exist? This question is quickly followed up with: Wait, what exactly is the vulva? Where exactly is it located? And then a google search begins. (For those of you silently wondering, the vulva consists of your outer genitals—the vaginal lips, vaginal opening, clitoris, and perineum). As defined by the Mayo Clinic, Vulvar cancer occurs on the outer surface area of the female genitalia and typically forms as a lump or sore on the vulva that causes itching.

Vulvar Cancer is incredibly rare—according to Cancer.gov, 0.3% of all women will be diagnosed in their lifetime. Also, yearly only 0.3% of individuals newly diagnosed with any cancer have Vulvar Cancer. To put this in perspective, last year in the United States, approximately 1.7 million people were newly diagnosed with cancer. The most frequent diagnosis was breast cancer (268,600 women). The rate for Vulvar Cancer was 6,070. Vulvar Cancer is more commonly found in women over the age of 65; only 14% of new cases (840 women) occur in those younger than 55. I am 47.

Listen to Your Body

The warning signs and symptoms of Vulvar Cancer often mimic other gynecological issues and are therefore frequently ignored or misdiagnosed. Persistent itching, bleeding not related to your menstrual cycle, tenderness, skin discoloration, and a lump or growth could be signs of precancerous cells and/or cancer. While I experienced many of these symptoms over time, I found it easy to rationalize and even discount what I was noticing. For example, a few years ago I had a skin biopsy on a spot on my vulva that was itchy and mildly tender. The results came back negative. I was provided with a cream to help manage the itchiness and the sensation eventually subsided. When the itchiness later resumed, it was easy for me to believe that there was nothing significantly wrong. Further, I entered perimenopause at the age of 45. I again completed various lab tests and a pelvic ultrasound. These tests only confirmed that I was indeed entering menopause. When “breakthrough bleeding” later occurred, it was easy for me to assume that this was related to perimenopause.

Determined and Optimistic

There is a history of cancer in my immediate and extended family. For most of my adult life, I have been fearful of receiving my own cancer diagnosis. And to be honest, I remain fearful of a reoccurrence or new diagnosis (my risks for cervical, ovarian, and vaginal cancer are now increased). And yet, once I was told I that I do indeed have cancer, in addition to fear I also felt determined and optimistic. I researched what information I could find from cancer websites (e.g., the American Cancer Society, the Society for Gynecologic OncologyMemorial Sloan Kettering Cancer Center) and collated the information. I am fortunate to have a wonderful treatment team through Rocky Mountain Cancer Center; they have remained honest and direct, positive and hopeful, and willing to answer all of my questions based on my research.

I began my treatment process at the beginning of October 2019. So far, I have completed 3 rounds of chemotherapy and surgery (a subtotal radical vulvectomy). I will soon begin 4 weeks of daily radiation supported by weekly chemotherapy. My life is now full of bed rest, boppy pillows, and baby wipes (ironic, as I have no children). I have learned to ask for--and more importantly to accept—help from my community (well, most of the time). I have learned that there is no reason to feel shame about having cancer. I have learned that talking about my “lady bits” with anyone and everyone has negated any (well most) feelings of embarrassment or discomfort with being the center of attention. (Ok, I admit it, I am relishing things being “all about me” right now). I have learned that I can still thankfully taste chocolate even when my taste-buds change from chemo.

My Lesson in Gratitude

I am grateful for my family and friends who have been fabulously supportive. They feed me, listen to me AND ask questions, take my dog out for walks, drive me to appointments, send wonderful cards and care packages (usually filled with chocolate). I am grateful for the financial support I have received from family, friends, my professional community, and even strangers, as I am self-employed and unable to work daily. I am grateful for beautiful sunrises and sunsets over the mountains. I am grateful for my treatment team, for their patience, compassion, optimism, and giving me a fighting chance. I am grateful for Facebook Vulvar and Gynecological Cancer support and awareness groups. They are filled with amazing women surviving gynecological cancers, offering tips and strategies for managing treatment side effects and providing unending support. I am grateful for my dad for having taught me how to keep a sense of humor while fighting cancer. I am grateful for my mom for teaching me how to find the strength to persevere and to see the beauty in the world. I am grateful for my aunt, cousin, and friends who have battled cancer, for teaching me how to be brave and honest. I am grateful to my body for its willingness to absorb all the fun side effects of treatment, for slowly healing, and for finding a way to let me know that something is really wrong. To this day, I maintain that my kidney stone was the worst pain I have ever experienced. However, I remain grateful as that pain, along with my vigilant urologist, ultimately saved my life

 

 

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44 Responses

sue caferro

sue caferro

July 06, 2022

I am 66 yrs old and I am a vulvar melanoma survivor. Year and a half ago I knew “something” was wrong in my vulva. Didn’t see or feel anything. I just didn’t feel “right” down there. ER PA examined me- saw nothing. Get Gyn referral in July of 2020 saw my regular gyno- prescribed me cream for post menopausal skin thinning. After third day, I had blood in the insertion tube- called gyn. Said give it time. Continued to use it. More discomfort and just “knew” something was wrong. Saw different gyno- she took bx x 2. Called three days later – melanoma! Set me up with fabulous surgeon and from there everything moved at lightening speed. After surgery five weeks 25 sessions) radiation. CT scan, blood work, Sx and oncology follow up every three months. So far no recurrence no metastasis. Praise God. But I am so raw I can barely sit sometimes. Docs tell me radiation burns can take years to heal——- if at all. Anyone have similar situation? Prayers for all of you.

SusiReadsALot

SusiReadsALot

July 06, 2022

Hi, I am looking for patient forum support for vulvar cancer. I would love to get some resources from women who are actively using the forum. I can’t seem to find ones that are active. I am in 4th cycle of Chemo for uterine and vulvar cancer. Any help is appreciated.

Gillian Davies

Gillian Davies

April 19, 2022

Hi I’m Gill aged 74 and having a simple vulvectomy on Friday 25 February 2022 at private hospital in Laval France. My doctor said it was Lichen Planus that was long term and serious. My surgeon said stage one cancer and to take all away including my clit but no further treatment and just sew me up. I regret not checking my lady bits earlier and was shocked when used a mirror to see red lesions and white growths on labia minore. I had itching, discomfort but no discharge or bleeding. I shall be glad to be rid of the discomfort and cancer. I must add that I had cervical cancer at 35 and breast cancer at 56 and after a hysterectomy and mastectomy with treatment made a full recovery. Stay strong my friends out there.

Anna

Anna

April 19, 2022

I’m so scared. I know how you feel, Jen S… scared and alone. I live alone. I’m turning 45 soon. After seeing various doctors for almost a decade, even coming up with lichen sclerosus on my google searches, a gyn NP recommended I get a biopsy. She didn’t know I had a punch biopsy 5 years ago that came out negative. But her suggestion confirms my worst suspicions and fear. Afraid to tell my mom as she is a cancer survivor.

I had a painful infected cyst last year that went away on its own but the skin growth on the inner labia is strange looking and widening. Now I have pain in my anal area that has been explained away as everything from fungal to hemarrhoids. the Burning from front to back is unbearable.

If anyone can talk me through this, please help.

AGreen

AGreen

April 19, 2022

Have been diagnosed with what the biopsy says is a squamous cell cancer but both the surgeons I’ve seen also believe it involves basal cells. They have all recommended a partial vulvectomy of 2 areas so basically most of the entire right side with hopes to save my clitoris, also was told the stitches most likely won’t hold and to prepare for large open wound for months. I’m 48, single and ride horses professionally or did as this will be at least 6 month recovery according to drs. Freaking out, as I have no real support system available and I have asked all my drs and nurses for help resources to no avail. Any tips for how to cope with the disfigurement and post op issues? Thank you all for sharing your stories about such personal issues, it helps to know you aren’t alone.

Linda

Linda

April 19, 2022

I just received a call this morning from my dermatologist giving me news that I have cancer of the vulva. I am terrified. My mind went numb while she was talking and I’m now waiting for a referral. I tried to call the doctor back but was transferred to voice mail.
No one can prepare you for this news. Any words of advice would be much appreciated .

Karine Clermont

Karine Clermont

April 19, 2022

Thanks for sharing your stories.
I am a 33yr old woman, battling with you 🤍
My journey with vulvar cancer just started in September 2021 and is really reminiscent of Karen’s.
This November I had a part of my vulva and a 6.5×5 tumour taken out of my lymph nod.
First week of January 2022 then started Chemo & Radiation to trie and eradicate all the cancerous cells left. In the midst of all this I also have to get Curietherapie for my new Cervix cancer.
I was lucky to get the gyneco oncologist I have who has my full trust. He is very thorough and available.

Ladies, it is painful, it is hard. You cannot do it alone, and you cannot keep it in. Talk about it, reach out, don’t be ashame. And don’t give up.

Beth

Beth

April 19, 2022

I am happy and sad to find this blog Happy there are other vulvar cancer patients to talk to but sad there are so many. I was diagnosed with Stage 3 vulvar and urethra cancer in October 2020 after 3 months of misdiagnosis and treatments by my primary care PA. During that 3 months my groin lymph nodes grew too. I also had intense itching and pain when I urinated. The tumor was wrapped around the urethra and too close to the pelvic bone to have surgery. So from November 2020 to January 2021 I went thru chemo (completing 3 of 6 planned treatments) and external radiation and then 4 brachy radiation treatments. I had a fantastic cancer team at M D Anderson in San Diego and UCSD Moores cancer center and am cancer free almost 1 year later. However I am struggling with some pretty painful side effects of the radiation. I still have a lot of itching and burning and my pelvic floor is swollen and very painful. Sometimes it feels like I am getting zapped down there with a tazer. I have been doing pelvic physical therapy and today my oncologist referred me for palliative care. Hoping someone can get me some pain relief. I am also experiencing a lot of emotional ups and downs. This has been hard on my marriage. I’d love to hear how the rest of you have managed the post treatment challenges.

Lee Nicole

Lee Nicole

February 07, 2022

Hello! I’ve been worried about vulvar cancer for a couple months now. I am 35. I had my pap at the end of summer and it was normal, but I reported itching and burning so they gave me medication for a yeast infection and a uti to treat while waiting for the results to come back. The results said I didn’t have a uti, but I finished my medication anyway. The symptoms have not gone away. I am still itchy, I have that burning feeling (not all the time, but frequently) like I still have to go, I go very frequently with urgency, and the most concerning issue is the bumps that I have. For years now, I’ve had pimple like lumps appear that I (admittedly a dumb decision) just popped and they went away. I attributed this to sweat and non corn underwear. However more recently, I have a bump on the left side of my vaginal opening that I (again stupidly) assumed was a pimple and squeezed it to pop. It didn’t pop and it hurt. It got bigger and eventually started bleeding a couple days later. I was alarmed, but kept it clean and didn’t think too much of it. It shrunk back down, and then I developed another one next to the left side by my outer labia. I left it alone and eventually the same thing happened. Then the one next to my opening grew again, and I decided to get a mirror to look down there and I was shocked to see that it was purple! I called the gynecologist the next day and they brought me in that day (last week) and it was not purple when she looked at it, just red. She said she would assume it may have been because of the trauma when I tried to pop it the first time? She swabbed it for herpes, and ran a bunch of other tests and everything came back negative. I also had some abdominal pain a month or so ago that lasted several days and felt like contraction pain you have while in labor, only this did not come and go but was constant. And I was bloated. That has since stopped, but I do have a pelvic/abdominal ultrasound next week. However I noticed today while in the bathroom that I have a new lump slightly above and to the left of my clitorus. I also just noticed a second one within the cluster of what the gynecologist labeled milia immediately above my clitorus just minutes ago. She didn’t seem concerned with cancer and considered that I may have interstitial cystitis, which is why I am having the ultrasound, but that doesn’t explain the bumps. Has anyone dealt with these symptoms? Do this sound like what you’ve experienced with vulval cancer? I intend on asking for another appointment after my ultrasound. I’m the meantime, I’m terrified!

Erin

Erin

January 20, 2022

Thank you so much for sharing your story! I still have embarrassment and lack of family support enhances that further. I was diagnosed with Vulvar Cancer in 2020 at the age of 32. My obgyn misdiagnosed me for so many years that I’m lucky my cancer didn’t spread further. I’ve undergone 2 surgeries and so far I’m currently cancer free. I really appreciate you raising awareness, my thoughts are with you and for all us women! We are so brave!

Margaret

Margaret

January 20, 2022

I was diagnosed with Vulva cancer at 23. I am now 42. I had 3 reoccurrences with it. I was the youngest patient my Oncologist had with this rare cancer. Your story is very important. Keep your head up and your strength.

Lori Chapman

Lori Chapman

September 17, 2021

Thanks for sharing your story Karen like you I was diagnosed at 49 yrs. Old which is young for Vulvar Cancer. I had a Tumor like Growth and Swelling that went from the front all the way to my Anus. I am so scared of Hospitals & I waited I really thought it was my Bladder? Never Wait Ladies.. I live in Buffalo, NY I went to the Emergency Room & the nurses had no Idea so they admitted me. There was a Gyno Dr. Conway that came to see me she knew right away what it was she told me I had Vulvar Cancer & I was in Shock she handed me my Cellphone & said just incase you want to Call your Family and she would be back to take some Biopsys. I couldn’t call anyone all I did was sit there for 2hrs. thinking how did this happen? When she came back she asked me if I called my Family & my immediate Family consists of my Mom & at the time it was Sept 2020 my 28 yr.old daughter & 20 yr.old Son. I couldn’t do it so I called and she talked to all of them & answered all there questions becuz as soon as I tried to tell them all I could do is cry! She is such a caring Gyno is even got me a Appointment with Roswell Cancer Institute 2 days later I say she’s my Angel she saved my Life! I had no Surgery just 6 weeks of Chemo 1 day a week & 6 weeks of Radiation 5 days a week. My last Radiation was Nov 20, 2020 & I was there in May and the swelling was still going down it takes a longtime but worth your life I had a PET Scan & received my results that day I was Cancer Free & in Remission. I go tomorrow so let’s keep our fingers Crossed. The HPV Virus caused my Cancer but you can still get this Cancer if you don’t have the Virus. Listen & pay attention to your Bodies if you think somethings Wrong and there telling you nothings Wrong go with your Gut get a 2nd Opinion & get a referral for a Cancer Doctor just to be Safe. Vulvar Cancer is rare & most Docs don’t know what it is becuz they never seen it. Like Karen my body was thrown into perimedipause & then Medipause with break through bleeding and I was Itchy down there & kept buying Yeast Infection Medication every other month which I didn’t need. I should of went to Gyno then becuz I normally only get them with Antibiotics & I was not taking them then that should of been a sign for me. When they say you know your Body that is so True! Go with your Gut and Thanks for The Stories I could totally relate to all of u guyz & stay Strong don’t give up!.. I was scared to look down there with a Mirror and now I wish I would of I think Self Examinations are important. I didn’t know there is more then one form of Vulvar Cancer? I don’t even know what Stage I was but I’m asking tomorrow…

Nicole Bell

Nicole Bell

September 17, 2021

Hello! My beautiful mom, the kindest woman I have ever know died from vulvar cancer last week. I am heartbroken, but I’m hoping to raise awareness of this awful disease. She died at 62, 10 months after being diagnosed. Her mild symptoms showed up back in 2018 as painful urination and burning. Fast forward to 2020, 17 doctors later, and countless misdiagnoses, she was finally diagnosed with lichen sclerosis and then stage 4 vulvar cancer in September 2020. The tumor was so large and the margins non exsistent, so surgery was not an option. She tried chemo first, radiation, and then immunotherapy. She died peacefully in the hospital waiting for a clinical trial. Her “symptoms” mimicked a UTI and yeast infection so not diagnosed in time :( praying for all of you ladies!

Laura Bieber

Laura Bieber

July 08, 2021

I saw my gynecologist over 6 months ago for a large hard painful cyst like lump on my vulva, he said he could prescribe antibiotics, but would not do a biopsy. Now I have another new lump on left vulva, they have both turned painful and purple and get darker every day, my whole vulva from the front back to my anus is swollen, red,burning and very itching and painful, it’s hard to sit or wear clothing, I wear men’s white boxer shorts, I have tried all kinds of creams and baths to relieve symptoms, right now extra virgin coconut oil has lessened the rawness and itching. I am 61 and had a complete hysterectomy at 48,I contracted genital warts from my 1st husband at age 20,I have smoked for 30 years and had a colposcopy at 38 due to an abnormal pap. I don’t know where to turn,this town has a horrible medical system and I have medicaid for insurance, I don’t even know if we have oncology gynecologist in this town, open for any suggestions.

E.W.

E.W.

July 08, 2021

Hello all,
I’m 30 years old, I’ll be 31 in 2 days.
I’ve been battling with a painful Vulva since Dec 2020. I’ve done more than 2 treatments to try and relieve my pain. Nothing is working consistently. Now, as I read other comments. I am kind of scared (CANCER). I’ve been trying physical therapy and meds to keep the pain away. You guys have actually gave me the strength and knowledge to get tested for Vulvar Cancer.
Thanks, Thanks, Thanks!!!!!

Elaine Philpot

Elaine Philpot

June 23, 2021

I started with one white spot near the urethra and tremendous itching. I was told to take thrush treatment but to no avail. Several years later a GP said i had Lichen Sclerosis and I had a biopsy, followed by removal of the skin tissue of the labia majora. The labia healed but scarring meant the two became stuck. several more years and more surgeries before V1N3 was diagnosed andin 2020 I had 38 daily sessions of radiotherapy, which eradicated the cancer. However one year later I have skin lesions like bumps and the cancer is back. I do not yet know what treatment is to be expected and I am pretty nervous, but radiotherapy worked before, it could do again. I am hopeful. I am also waiting a CT scan to check if radiotherapy has killed the cancer in my lungs. Keep fighting, don’t give up.

Nannyanna123

Nannyanna123

June 16, 2021

So after months of knowing something wasn’t right thinking menopause was starting then finding white patches i got the courage to go doctors my gp done smear and swabs and looked at patches of white she has referred me on 2 week fast track she phoned today to say all swabs and smear clear so now I’m scared confused and waiting till next week when I go hospital don’t no what to expect if it will take weeks for biopsy test results of if they will just look and know

Melissa Scott

Melissa Scott

June 10, 2021

Thank you for sharing your story. I was diagnosed with vulvar cancer in March 2021 and my surgery was April 2021. I am 40.
This is such a taboo area to speak of and I was quite embarrassed.
Thank you for making me feel like it’s ok.

Tolani Fatima

Tolani Fatima

June 07, 2021

I had a lump on my labia minora in 2013 after the birth of my Son, it was diagnosed as bartholin cyst. It came back again in 2014 after the birth of my daughter which later dissappeared on it own. I had another baby in 2019 and I discovered another lump on the same left side as the previous one . As always I though it will go away on it own but it has gotten bigger within a space of 6 months. I had itching las week close to the lump and it turn into a painful sore. I have also not had my period for May till today. My doctor diagnosed bartholin cyst again and I m booked for removal on Monday but I have decided not go through it until I get the result of my pap smear on Tuesday. I m hoping for the best. I m 39 years old with 3 young kids.

Deborah P

Deborah P

June 02, 2021

I was diagnosed with Lichen Schlerosis three years ago and Squamous Cell Vulvar Cancer four months ago. Five weeks ago, I had most of my labia removed, excepting the clitoris and hope that I will not need radiation as my lymph nodes are clear at this time. Unfortunately, the remaining area is DVIN so I expect there will be more surgeries in my future. I am 66 yrs old.
My question, and one I can not find an answer to, is has anyone else had ongoing bleeding or oozing from the site five weeks later? I would love to stop wearing menstrual pads and am worried that the area is not healing properly.

Jodie

Jodie

May 26, 2021

Hi, I’m 36 and was diagnosed with vulva cancer at the end of 2019, I had a vulvectomy and all my lymph nodes removed from my groin, I’ve had problems down below ever since I was young but never found out why until I was diagnosed, i had extreme itching and when I say extreme I mean EXTREME! and the a wart like lump appeared that got bigger over time, I had it a while before I went to the doctors, they sent me for a biopsy and within days I had my diagnosis, I have been a long term sufferer of lichen sclerosis which is one of the main factors of why I ended up with this cancer, my oncologist said if I had been diagnosed with lichen sclerosis years before and been treated for it I may never have got vulva cancer, I’ve found it extremely hard, not the physical side of thing but the anxiety side of it, I am ok now they managed to remove all of the cancer which I’m so so grateful, I just get so scared of it coming back, all I can say is that no matter how small or insignificant if something isn’t quite right go get checked by a doctor as soon as possible, they say vulva cancer is mostly diagnosed in older women, I was only 35 when I was diagnosed, it can happen to anyone xx

Peggy

Peggy

May 19, 2021

Karen, thank you for sharing your story.
I want the world to have an awareness of vulvar cancer, and that begins with sharing each of our stories, as each of us advocates for ourselves and fellow vulvar cancer patients and survivors.
I am a 55 year old vulvar cancer patient currently being treated with chemo and radiation. I was first diagnosed with vulvar cancer at age 48, had a radical vulvectomy( precancer several times beforehand). In December 2020, another surgery for a second occurrence. Then before recovering from that surgery, I found another lesion, so that lead to the current treatment of chemo and radiation. I don’t want to be silent anymore, I want the world to know about this cancer, and how it affects our lives, and lives of our loved ones. Stay strong!

Deborah hope

Deborah hope

April 27, 2021

I’ve just been to the doctor waiting a 2 week referral white patches on my vulvar no sore or redness yet

Polly

Polly

April 19, 2021

My sister in law passed away yesterday from
Vulvar cancer . She was 57. She was diagnosed in Feb 2020. She had some symptoms that she should have gone to the doctor. I never heard about this type of cancer before. She really suffered and this cancer is deadly. Please go to the doctor if you have any of these symptoms. My heart is broken!

Susan

Susan

February 17, 2021

I have had 4 vulvar cancer surgeries they have removed the whole right side then they removed the middle part this December the side effects are horrible but determined to fight for as long as I can

Cass

Cass

February 17, 2021

Hi! Just hoping for an update… how are you doing?

Cathy Martin

Cathy Martin

February 06, 2021

Hi. Diagnosed with Vulvar cancer today. Kinda in shock – worried but more mortified of telling anyone I have vulva cancer. I long road ahead and much personal embarrassment but I keep telling myself my life is worth it…

JT

JT

February 03, 2021

I just found out I have melanoma on my back and basal cell on my chest. Now I’m hyper sensitive about everything. For years I’ve had a bump or two in my vulva, one in and one out. I’m embarrassed to ask about it. It itches sometimes and bleeds. The itching drives me nuts, I scratch until it bleeds and then it just hurts. I haven’t been able to get a pap smear for years as I always have my period. I’m 51 and don’t think I’m in pre menopause but does it matter? I’m scared to death to talk about it and I’m still scared and sad about my skin cancer.

JT

JT

February 03, 2021

I just found out I have melanoma on my back and basal cell on my chest. Now I’m hyper sensitive about everything. For years I’ve had a bump or two in my vulva, one in and one out. I’m embarrassed to ask about it. It itches sometimes and bleeds. The itching drives me nuts, I scratch until it bleeds and then it just hurts. I haven’t been able to get a pap smear for years as I always have my period. I’m 51 and don’t think I’m in pre menopause but does it matter? I’m scared to death to talk about it and I’m still scared and sad about my skin cancer.

Anonymous

Anonymous

December 18, 2020

Hi, I m worried now. I got a painful sore in my left side of vulva( it’s near labia minora). Now this place developed a lump. I m carrying this lump for 3 yrs. I went to the gynecologist they told me there is nothing to worry. But I m not convinced . Can someone please help me with this regard.?

Tina

Tina

December 07, 2020

I am 36 years old and I’m absolutely terrified. I have had women’s health related issues since I became pregnant with my oldest child. Preeclampsia and hemorrhaging. Then again with my second child three years later. Over the years I have had pain, irregular periods and brown discharges. I’ve consistently been told that tests come back normal. In 2014 I had several cyst like bumps on my vulva. They dismissed it. The bumps went away. Two years ago I had a bartholin cyst. It too went away. But yesterday I felt another one. I didn’t look at it until today because it wasn’t really painful until a few hours ago. But as I looked, I noticed that the “tissue” around my vulva looks abnormal. It looks like I have pores and little white heads throughout, as well as a bartholin cyst on the other side. The area around my vulva actually looks like it’s deteriorating if that makes sense. I have never seen anything like it and can’t really find photos online that look like it but I know that whatever it is, it’s serious… I’m devastated right now and terrified. I can’t imagine what it could be but everything I look up points to cancer. I too am in Colorado and with our new state restrictions I know I will have to advocate for myself in order to be seen as soon as possible.

Jeannie

Jeannie

November 20, 2020

Thank you so much for your openness regarding your experience. I too have been undergoing preliminary treatments with anti itch pills and gels. I had a biopsy on my vulva which came back negative. It concerns me because after my gynecologist spoke and showed dermatology my results they thought she was talking to them regarding my EYELID??!!!
I have another biopsy Friday because I have every single symptom for vulvar cancer. So if it’s not that, what is it. I have lumps and white lesions. I’m embarrassed scratching, despite I’m alone; it still feels embarrassing. I wanted to know aside from the symptoms online has anyone had any other symptoms with lack of hunger, weight lost, or only tasting salty and sweet foods? Doesn’t seem as though there is a lot of information, so any guidance would be greatly appreciated. Thank you, Jeannie

Hope J

Hope J

October 14, 2020

I went to planned parenthood last month for my regular Pap smear. When I was there, the ARNP noticed a small white lesion on my vulva. She said it was likely genital warts caused by HPV. When my results were negative for HPV and all other STDs, they had be come back in for a punch biopsy. The lab results showed that it was Squamous Cell Carcinoma. I am on my way to the Seattle cancer center now, where I am scheduled for a wide local excision. I have no idea what to expect or whether or not I will need additional treatment.
I was interested to see that you had kidney stones first, because I was hospitalized for kidney stones a few months ago. Is that connected to the vulvar cancer?

Jamie

Jamie

October 05, 2020

Hi Karen, sending prayers your way and thanks for the honesty that will bring help to others. I self treated what I thought was a vaginal cyst for 8 weeks. Eventually went to my general Physician, who immediately informed me it wasn’t a cyst and urged me to have a biopsy. First appointment available was three weeks out. That was on 9/16/2020. Gynecologist performed biopsy but also stated she was sure it was Vulvar Cancer. I elected to wait the projected 5-7 days for test results, which has been delayed by Covid. I hope to hear something this week, but have already experienced drastic changes, that include discharge, odor, and pain in the rectal area. According to what I’ve read, I fear this means the cancer is progressing rapidly. The pain has gone from manageable to constant and severe. I just turned 58 last month and never dreamed this would be my quality of life. Lesson learned….DO NOT self diagnose and self treat. Seek medical attention when your body indicates something is wrong. Prayers and hugs to anyone going through this.

Pam

Pam

September 24, 2020

Hi I am going on for a check up for a big black masss on vulva -feeling sad

Marie

Marie

September 14, 2020

I’m laying reading all these comments and fearing the worst no one has diagnosed me with anything but these symptoms are what I’m experiencing the small lump on my labia to the itching now burning sensation I’m scheduled this day to see my GYN very worried about the out come.

Jen S

Jen S

August 20, 2020

I’m so scared right now. I’m waiting on a biopsy I had done yesterday for pre cancerous vulva area spot on lower right side by vaginal opening. I have a sore that wasnt going away for 4 weeks.It took 2 weeks to get an appt with a gynecologist. She blurted out that it look pre cancerous and did a biopsy but I’m still in shock and have to wait 5 days for results. I’m 65 yrs old. I’m here at work exhausted just thinking about the worst. I even have cried 3 times because every time I feel down there it doesnt feel like a sore that’s going away. Now theres a black spot where the Dr cut for biopsy. I’ve decided I will have it removed either way. But the emotions I’m feeling now are taking over my well being. I’m wondering if this is normal to feel so alone and scared.

Suzanne

Suzanne

August 20, 2020

Karen it’s so good to hear your advice and comments .Our 76 year old mother had been diagnosed with vulva cancer last November this cancer was at stage 2 at that particular time . .Due to Covid we waited until the end of January until we received an appointment at that point the cancer had progressed to stage 4.We are now almost at the end of August and we have been told there isn’t any further help that can be given, the sad part of my mother’s journey through this debilitating illness is that nobody really new how to treat this specific type of cancer as it is so rare ,with district nurses often refusing to look at the area which is now ulcerated or provide any treatment we feel really let down by are NHS system who are constantly blaming Covid for their lack of personal care.You mention your own team and community around you ,I wish we had the same support it’s so good to hear as this is crucial to your recovery.

COSMAS Muroiwa

COSMAS Muroiwa

August 12, 2020

Hi Karen
Thank you so much for your post. Today my wife just told me that our 21 year daughter has been diagnosed with valva cancer. The gynaecologist advised early surgery of which is to be done today. It was detected on the 7th of August 2020 and hasn’t spread too much to other parts. Your article gives me at least the comfort that all will be well with our daughter. I will assist my wife to manage my daughter’s situation in the best possible situation and comfortability.
Thank you so much and stay blessed

Kristina Johnson

Kristina Johnson

August 06, 2020

Thank you for sharing my mother was diagnosed with vulvar cancer when she was 60. They caught it early on and did surgery to remove the tumor and she did radiation. Everything looked good. 2 years later the cancer came back in September of 2017. She went back in for surgery. The dr said that the cancer had spread and she had mini tumors in the surrounding areas. They said there wasn’t really anything else to do. I wish I would have pressed further or gotten a second opinion. By December of 2017 she had started holding fluids and we took her to the hospital. They took out 3 liters of fluid from her abdomen. We then find out the cancer has spread to her liver, they give us 12 months. This was on December 20, by December 27 she was no longer able to talk and she was sent to hospice. She passed away on December 31. My message to everyone is be diligent and listen to your bodies. And if you think something is wrong go seek help and don’t stop until you get an answer.

Becky Bowles

Becky Bowles

July 30, 2020

My mom was diagnosed at the age of 90 with vulva cancer. The physician was treating her for a yeast infection. This treatment continued for about 6 months. I made an appt. with a GYN and once again treatment for the itching and burning. Then I took her to another GYN, treatment again. After the second visit to the GYN, she referred us to a dermatologist and diagnosis was made. She underwent 30 treatments of radiation. She opted for no surgery, she was free from this horrible cancer for about 4 months. She is now in a nursing home, with Hospice. She has a catheter in her bladder and the cancer is taking over the urethra and she is incontinent. She is in pain all the time. It’s so sad. Please get checked at any age if symptoms persist. There needs to be more awareness of this cancer.

Karen, I am so happy this was caught early. I hope u continue to do well.

michelle chicaiza

michelle chicaiza

June 24, 2020

Hi, I from Ecuador and I read your story is very inspirational. My grandmother was detected this kind of cancer. She has 88 years old. The situation is difficult but your story is so great to learn that my grandma is not alone in this illness. The pandemic situation does not allow to continue with the treatment. But thaks for share your experience. My best wishes for you.

Donna

Donna

May 11, 2020

Hi Karen,

Thank you for sharing your story. It is both helpful and uplifting considering what I have found thus far in trying to garner some insight. Just days ago I received the official diagnosis of vulvar cancer and, while I am the eternal optimist, I must admit I remain silently anxious about the unknown to come within the next weeks/months, and hopefully, years.

Larry Polsky

Larry Polsky

March 17, 2020

Karen. I am so happy for you things are moving positively! Your story resonated with me as I was diagnosed with stage 4 melanoma in 2018. I am learning the same things – get help , ask what you need, feel the love of the community as that is so strong and I believe is ultimately saving me. I also learned about chronic illness families where people get sick because they can’t ask for what they need and the family is not good at handling conflict and dissent. Once they are sick they have to get the attention they want. This whole experience is a blessing.

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