I AmA Vulvar Cancer patient. Its rare, so AMA! (NSFW)

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But.. but how?

i think we should take her word for it.

You should. You dont want to see pics. Trust me on this.

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And thank you for being a heath professional! I am eternally grateful to the doctors, radiation techs, infusion nurses, etc who have been so patient, humorous and kind during this difficult time.

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Which field? Radiation? Oncology? If you let me know, I'll try to be specific.

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Well here are a few random tips:

• the doctors always seemed very empathetic, saying "Im so sorry you have to go through this". Really, during chemo and radiation, there is nothing they can do except keep me from throwing up and just get me through it. But saying the above made me realize they were on my side.
• gather as much info as you can from other patients to pass along to new patients. I got a lot of helpful tips from nurses and doctors, such as "going commando" (no underwear) while wearing skirts, soaking my lady parts in a bath and using Aquaphor for relief.
• know your stuff. My first jackass oncologist whose patients had the mean age of 80 couldnt tell me my chances of getting lymphadema (swelling of the legs) before my first surgery, but my current oncologist rattled off "10-20%" and went on to explain without batting an eye. I like to know everything up front. I dont like surprises.
  

Good luck on the job hunt! Hope this helps.

Has it effected your sex life what-so-ever, and if so how?

It sounds like you are doing ok, glad to hear it! Ovarian and cervical cancer do get publicity as well, but I've never heard of vulvarian cancer so thanks for the heads up!

Due to the radiation now (two days left - woot!), I am unable to have sex. It would be extremely painful. The skin on my bikini area is burned and peeling, and my vulva and vagina is, well, mincemeat. There are open wounds in my vulva and god, it hurts to pee. If ever I wanted a penis of my very own, its now. Its like peeing razor blades and if urine touches the nearby skin anywhere, it sends me through the roof. I use a bottle of water to rinse off but that is also initially painful. Im on vicodin because the pain is so intense and that really doesnt help much, except to take the edge off.

Ive been told this will all go away a few weeks after radiation. Im looking forward to it!!

I recently finished Radiotherapy and it took me a week max for it to go away. I hope the same for you. Radio's a bitch.

oh thank you for your comment! I wasnt sure if the healing would start in a week or be well on its way in a week. Im sorry about your radio - sucks, I know. :( I hope you are doing alright.

Yeah, I'm doing fine thanks :) One more session then it's just check ups and physio! How's treatment been treating you?

One more session - that's great! :D I have two left! Im finished on with radiation on Wednesday. Chemo ended a couple of weeks ago (my platelets were low last week, so they just sent me home). What is your last session? I thought you were done with radiotherapy?

derp, didn't specify that the final session was for Chemo :P I'm so used to telling friends that know I've finished Radio that I forgot to say :) Awesome news on your chemo though! It feels great to know it's all coming to an end huh?

yes, it feels brilliant! :D I can't wait. Does your chemo make you sick or will your next session be the end of discomfort?

I usually feel sick and generally under the weather for the five days I'm on it, but within a day of going home I'll start to feel better. So apart from becoming neutropenic I'm usually able to get back to normal fast!

It was opposite for me - I felt alright after chemo (with the help of anti-nausea meds), but by the 5th day, they all wore off and I felt crap. I hope your last chemo session goes well and I wish you a speedy recovery! :)

edit: "great" was too strong of a word lol, changed to "alright"

See if you can get some normal saline for rinsing off. Should sting much less than plain water.

Thanks! I'll ask for some tomorrow :)

Does it piss you off that many men and women don't know what a vulva is and refer it to as the vagina? It annoys me for some reason. Probably bad sex ed I think. I wish more knew the distinction, it''s very important. Alternatively, pussy is a good catchall term.

YES!! hahaha yeah, I told a family member I had vulvar cancer and she asked what exactly that affected. My reaction: facepalm lol yes, I agree - "pussy" is a good catch-all term.

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What?! Even the doctors wouldn't call it by its proper name? Ugh. Im really sorry for what your mother and your family went through. It sounds like hell. I hope she is doing better.

It really disgusts me when people (especially doctors!) are so uptight to confuse sex with science. Its a medical condition and should be treated as any other cancer, such as liver, testicular or brain cancer. It seems that breast cancer has reached a point where it is no longer taboo to speak about it - heck, its acceptable to get a license plate to advertise it! - and that is where I'd like to see the vulvar/cervical/ovarian cancers be someday. I can only guess vulvar cancer isn't discussed because its rare and some old-fashioned notion that "ladies" shouldnt talk about their lady parts? I dont know. Id like to hear others' ideas. Im stuck on this question.

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Great news on your mom! I'm right with you on the PPL, chick, I couldn't have said it better myself. I think that pussy cancers are where breast cancers were before breast cancer awareness. Now I would like to think that if a woman finds a lump in her breast, she'd see a doctor just as she would see a doctor for strep throat. Unfortunately, its not the same for weird stuff "down south". My proof:

• hospital admittance clerk said her sister died of vulvar cancer. Discovered too late.
• good friend had pussy issues and kept putting them off. Had a hysterectomy. And I think she still has issues that she won't even talk about.
• talked to a woman yesterday whose gynecologist didn't discover 3 tumors in her vagina. She insisted something was there, and had a hysterectomy.

I respect and understand that some women are just modest, but it's a doctor's job to take a look at your lady regions. Its a vicious circle if women don't want to talk about it or see a doctor. And I firmly believe that as more women talk about these cancers, the more the medical community and patients learn and find ways for patients to cope with the pain. Over the years, every time a doctor asked during my yearly exam if a student could watch, I was "hell yes!" and pointed out the lichen sclerosus because docs need to be educated too. I wouldn't want a kid to have to go through the embarrassment I did from itching, and have an ignorant doctor tell them to change their body soap. (which they did - it didnt help, of course)

Done with my rant hehe. Thanks for your wishes and comments! Send your mother my regards and look after yourself too!

I had no idea this was possible and I appreciate you heightening awareness. I'm also glad things are going well for you from the sounds of things! I'm undergoing my second round of monitoring after precancerous cells showed up in my pap-smear (cervical not vulvar obviously). I was curious if you have children? Did you have to go through any additional monitoring (frequent pap smears?) for abnormal results? Was it your increased risk factors that made you go for that "pimple" biopsy or did something just seem off about it?

Im sorry to hear about your precancerous cells but glad to hear you caught it early!

I have two boys - ages 5 and 7.

In a couple of months, I get another PET scan to see if the cancer that was in my lymph nodes is gone. Then I will be monitored 4 times a year with at least one pap smear. My paps have always been clear. They usually just look at my vulva with some kind of magnifying device when Ive been to the doctor's before. If anything looks suspicious, they take a biopsy with a little hole-punch thingy.

Yes, my increased risk factors caused me to take occasional looks at my vulva with a mirror and also be aware of changes. The pimple/growth didnt go away and it was painful, so that made me see the doctor.

Ugh those biopsies are soo uncomfortable. I had one a few months ago to test for lichen sclerosus, and boy was it unpleasant. I can't imagine going through it so frequently, plus all the other crap you've put up with. Best of luck with your recovery!

Oh god Im sorry you had to go through that. Hopefully you dont have lichen sclerosus, but if you do and have questions, drop me a line. And thank you!

Did they remove part of your vulva? If so, would you consider getting plastic surgery to restore it?

Yes, they did. My first surgeon removed my right inner labia and then sort of fused/stitched the rest to my outer labia, so I really felt off-center for a long time. When I brought it up to him at my follow-up he seemed like an insulted artist and said I should be happy it wasnt ALL removed (he was a jackass).

Then I consulted a gender-reassignment surgeon (hey, if he can make a vagina or a penis out of nothing, surely he can fix this!) and he said it would be a simple outpatient procedure. But I had to be cancer-free first. I considered it, but I wasnt too keen to go under the knife anytime soon. Then I went for a Brazilian wax and figured in her 10+ years of practicing, surely the owner has seen a lot of pussy. She said "every flower is different" and assured me if I hadn't told her what had happened, she wouldnt have known.

TL;DR: I probably won't. Tired of surgery and knives.

Thank you for sharing your journey- I had a bartholin's cyst and was at first too embarrassed to have it professionally evaluated. Upon the recurrence, I spoke with a doctor who scared me by immediately jumping to (vulvar) cancer and the worst case scenario, but also shamed me for not speaking with him sooner. Thankfully a second opinion outed the cyst for what it was, and I didn't require surgical intervention, but I appreciate your forwardness and overcoming the 'shame' to speak about genital afflictions which women are too often afraid to speak about!

Thanks for sharing your story - early on, when you know nothing this stuff is scary, especially when there are doctors jumping to the worst case like that. Im glad it wasnt vulvar cancer. :)

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Obviously, its hard to escape the publicity surrounding breast cancer and while a bit irritating to someone who DOESNT have breast cancer, Im glad to see that it shows women there is nothing to be ashamed of because it has to do with gasp breasts. Most of the women that I see in the waiting room for radiation are breast cancer patients. When I told them I had vulvar cancer, I just got blank stares and silence. I think people need to be aware of the non-breast cancers too.

I believe what iamadeformedewok was asking though, and correct me if I am wrong, is what are your thoughts on people using the issue to make a profit instead of say, putting it into research for a potential cure, all while under the guise of being "non-profit"?

If someone is profiting off of any cancer, I think its wrong. I think all or at least the majority of the money should go to research.

What was your reaction to the diagnoses?

I was scared and quite frankly, absolutely livid. I had been in a loveless and sexless marriage and filed for divorce a few months prior but it wasnt final yet. I was pissed that I was going to potentially lose my sex organs while all this time I hadn't been using them.

Not sure if that puts me in this group or not.

Was the bump/lump you found any different from like a typical pimple/boil/ingrown hair? Mainly asking so we'll know exactly what to look out for. Also, I hope you'll get well soon and beat this cancer for good.

Thank you!

It was larger than your average pimple or ingrown hair. It might have been of the "large pimple" category, probably closer to a "growth". It wasnt going away and it was painful. It was also more red than the surrounding area. Something like this:

[really nsfw, and gross] http://www.aafp.org/afp/2002/1001/afp20021001p1269-f2.jpg

What was your initial 'bad feeling' or sympton that sent you to the Doctor?

As a child I had lichen sclerosus but it wasnt properly diagnosed until I was 19 when I went to see a gynecologist. He told me I was at risk for vulvar cancer, but I didnt expect to see it until I was 70-80 years old. Ive been pretty consistent about seeing the gynecologist yearly and getting the occasional biopsy which have always been negative. Last year, I noticed a painful, large, pimple-like bump on my labia minora and went to see the gynecologist who sent me to a specialist who did the biopsy and confirmed it was cancer.

Thanks for replying. It sounds like its something you were quite aware of your whole adult life. What should someone who isn't aware of this type of cancer be looking out for? And What's lichen sclerosus?

I think a woman should look at her vulva in a hand mirror once in awhile and be aware of any growths/changes. And see a gynecologist right away if something is growing or is painful or odd discharge or whatever. Had I seen the doctor much sooner, I might have not lost so much of my vulva.

Lichen sclerosus is a terribly itchy skin condition, typically in older women in their vulvas. Unfortunately, I had it at the age of 2 in my vulva. Doctors didnt know what it was. The skin turns white and scaly in places. Luckily I didnt have it too bad and was able to get some steroid cream to treat it after it was diagnosed. Heres a link: http://en.wikipedia.org/wiki/Lichen_sclerosus

Thanks for replying again. I know that I'm definitely part of the 'die of shame' culture in that I would rather ignore a personal problem than see a Doctor out of pure embarrassment and reading your comments has given me something to think about. So for that, thank you.

One last question, how has whats happened to you affected your day to day life, physically and emotionally?

You are welcome. Dont be ashamed! They are doctors - Im sure they've seen worse. (thats my philosophy anyway!) lol

For the last 3 weeks, my day-to-day life consists of keeping pain to a minimum and keeping things as normal as I can. Im a software engineer but Ive taken medical leave as I can't walk very well or sit for very long without pain and the chemo/radiation has made me very tired at times. I take baths 2-3 times a day because it helps with the pain and once my body is able to start healing, it will help the healing go faster. My digestive system has been hit by the chemo/radiation too so I've been taking stool softeners/Immodium based on whatever comes out (yeah, my backside's been affected by radiation too - sucks).

As far as emotion is concerned, Im a runner so I try to keep the half-marathon mindset during all this. I just try to maintain and keep going and figuratively put one foot in front of the other and know that in the next few weeks I'll be healing. Sometimes it gets to me and I have a good "god, this sucks!" cry, but then Im ok. My parents are very supportive and I have a boyfriend who keeps me smiling. Then I'll have a good Lego Pirates of the Caribbean PS3 play with the kiddies and forget about it for a bit. :)

TL;DR: take it minute-by-minute sometimes and distract myself

As a female, one who has family members who have suffered from an array of cancers of the reproductive organs, I was unaware that this existed. Thank you for bringing this to my attention.

You mentioned that you had lichen sclerosus, but did you have any other medical issues that you think may have exacerbated you developing vulvar cancer (STDs, for example)? Have any other women in your family had vulvar cancer?

I cannot imagine how horrid radiation on the vulva/vagina must feel. Eeesh. Good luck in healing.

Goodness, Im sorry to hear about your genes. :/

I havent had any STDs. My paternal grandmother had cancer and everyone was pretty hush-hush about it, but my dad suspects it had something to do with her reproduction system/vulva? based on her treatment. So I don't know for sure. Other than that possibility, there has been no one else.

Thanks for the encouragement. :)

What do you think of people who don't get their kids vaccinated for HPV before they become sexually active? All my kids will get vaccinated, both boys and girls.

Im not sure, I havent done enough research on it yet. But if I had to do it right this instant, I'd probably have them vaccinated. My kids get the other vaccines and I just want them to be protected. I know other people dont feel the same but I dont know their reasons.

That sounds rough. Good luck with your pussy cancer.

Thank you, Lord.

A few years ago my best (male) friend and I were talking about illnesses and cancers that afflict females, but effect whole families- he proffered that men/partners were obligated/responsible for being the first line of defense for cancers and abnormalities in the genitals of their partners ESPECIALLY in cultures where women are shamed or ostercized for coming forward.

Did your husband/partner notice your growth before you? Did he/she say anything?

Unfortunately at the time of the growth, I had filed for divorce from my husband and we hadn't had sex in a long time. I wasnt seeing anybody since we were still living together at that time and I wasnt ready to date.

I agree with your male friend. If your partner is going to be "frequenting the area" so-to-speak, he/she should let you know if something isnt right. ;

Edit: but ladies should also look/feel for themselves! You should know whats down there. (I didnt mean it that way - thats a whole different subreddit!)

When I saw Vulvar I imagined Sruffy from Futurama trying to pronounce lady part names.

hehehe He can be the vulvar cancer mascot! lol

Cure rate? Plans for the future? Prognosis? I look forward to a AMA from you in a year or two talking about remission, Good luck to you and the treatment plan your docs have set out.

After my first surgery where my labia and the sentinel lymph nodes were removed to be biopsied (they were not cancerous), I was given the all-clear. Then in February, there were two lymph nodes in my groin that were sore and swollen all the time. I went to see my new oncologist and got a PET scan (insurance would only pay for a CT scan on first surgery), which showed the swollen lymph nodes were cancerous and had to be removed and another cancerous node in my pelvis which wasnt big enough to remove, but could be irradiated. The oncologist decided to go for an aggressive approach since Im young(ish) and healthy: six weeks of chemo and radiation to kill the cancerous node near my pelvic bone as well as any cells that are even thinking of becoming cancer. We are hoping to cure me. Im having another PET scan in a couple of months to see if its gone. (apparently radiation keeps doing its job months after one stops being radiated.) Then I'll have checkups every few months.

edit: the swollen lymph nodes were not the sentinel lymph nodes, but a few lymph nodes further down the chain. This is probably the reason there is so much controversy regarding sentinel lymph node biopsies.

Did you switch oncologists because of the first treatment or because of a gut feeling? Just curious. Glad you followed up. That was always a big one in the OR, we'd see patients that just let it go on too long and we would have to be more extreme.

Anyone, guys and gals. If something doesn't feel right, or something is new and wasn't there last night... make an appointment.

Both. My first oncologist was referred to me and was also a bit arrogant. He had his own private practice and seemed ok at first, despite him saying I was one of the youngest vulvar cancer patients he's had. We talked about the surgery and I stressed I wanted to keep my clitoris and he agreed. As time went on though, he kept repeating that his other (70+ year old) patients had their entire vulvas removed. I kept repeating that I only wanted the cancer removed and the clitoris spared. I got the feeling his life would be easier if I had everything removed and thats not right. But because finding a new oncologist might take too long where the growth would impact my clitoris, I stuck with him. Surgery day he couldnt tell me my chances of being affected by lymphedema (swelling of the legs), which seems like an easy question to me. Surgery went well - he did what he said he'd do and for that, Im grateful. During the follow up, I was feeling self-conscious about my lopsided vulva and his response was to be offended, saying Im lucky I didnt have to have everything removed. Then he told me to go get a radiation consult from his friend and I said "why? you said the cancer was gone" He told me to go and see him, and that he'd want to do radiation therapy on me. I got a second opinion, who read the surgical report and said it was unnecessary. Needless to say, I searched for a new oncologist and found a great one at MD Anderson. It was the best decision Ive made.

TL;DR First oncologist was an arrogant jerk. Current oncologist is the best.

what did you eat for lunch today?

Premier Protein shake - radiation to my pelvis/digestive system have messed things up for awhile. Sticking with liquids to make my life easier.

I noticed you mentioned the rise of HPV related cancers. My dad had stage 4 throat cancer stemming from HPV (he's fine now). Do you have HPV and is that related to your cancer? (I know it's related to cervical cancer in women)

No, I dont have HPV but after doing some research, I realized HPV is probably more prevalent than lichen sclerosus which is what made me high-risk for vulvar cancer. I thought it was something people probably didnt know.

Radiation therapist here. Sorry about the side effects of the chemorads. I can't imagine how painful that is. Do you have any males treating you and if so, does it make you uncomfortable having them treat you (from my experience most of the women I have treated with the cancer don't mind too much, they are just glad to get help)?

One of my radiation therapists is a man and it hasnt bothered me a bit. He's very respectful. Like your most of your women patients, Im just glad to get help.

I just wanted to say that my mom used to think Volvos were called Vulvas! Haha! I was actually thinking about that today! Anyways! Good luck and glad to hear you're doing well! Cancers a bitch!

Thank you! And I will never think of that model car in the same way ever again. hahaha Luckily, I don't drive one. lol

What's your odds? I hope you'll be ok.

I dont know for sure and thank you. I'll ask during my doctor's appointment tomorrow and post back.

I am glad you are doing well! I have vulvodynia, so a completely benign condition, but I can relate in the small sense that it's something that completely screws with you 'down there' and makes you question your worth and sexuality.

Keep up the great work and education, and stay healthy!

Thank you! I looked up vulvodynia and that sounds unpleasant. :( You are absolutely right - anything messing with your lady bits is bad enough, but then you start to get a little insecure. Not worth worrying about though - life is too short. :)

Stay healthy yourself!

((Is an AMA only usually going for 1 day, or will it stay open/active for a few days?))

It will be open for a few days. Im not going anywhere lol.

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Perhaps? When writing this AMA, I couldnt think of an all-encompassing word for a woman's nether regions, so I resorted to a vulgar one. Is there a non-vulgar alternative?