Vulvar Cancer: Anyone else?

I’m sorry to hear about your problems with genital odor. I did not experience this however I received so much support with the effects of radiation that I did experience from the nurses helping out in the RADIATION treatment area. They are very knowledgeable and able to address most every issue that arises.

Be sure to make your issues knowing and hopefully you will receive some help.

Wishing you much support and good luck!

I just was diagnosed with vulvar melanoma and there is an odor. I can't smell it. I hope others can't. However, I strongly believe my 1 year old female dog does by her behavior. She keeps jumping up to me in that area. I just push back and say - Stop It! But she does it pretty much every day. I hope she understands that I'm working on it and I got her message.

Hi. I'm new here. FYI, I had my first biopsy surgery about 2 weeks ago and in 2 more weeks I have to go back for a second surgery to clear the 2 cm parameter of where the mass once was. I had a 5 mm vulvar melanoma. I still can't believe this whole thing.

@teedee66 I'm with you that your dog can smell the change. Our animals, including cats, have so many more cells for smell than we do.

The diagnosis of vulvar melanoma must have been such a shock for you. I'm putting myself in your place when we hear a diagnosis from the doctor. Something we are never prepared to hear. I'll share this. When I received my diagnosis of endometrial cancer I felt like my hearing became super loud and I thought at first oh, that's can't be me. But it was. Like you, I was fortunate that treatment with surgery was scheduled within two weeks of the diagnosis. Getting that schedule and treatment meant everything to me. I could then feel more hope because I didn't have to sit with the diagnosis wondering what's next. I needed that treatment plan to have hope with optimism.

What are you doing to care for yourself? Do you go for walks with your dog? Take a soothing bath? Eat some comfort food you enjoy?

Hi @mabosh I hope everything is getting easier for. I too was diagnosed with vulvar cancer in 2018. I did not have an odor prior to treatment. Unfortunately you are experiencing this unpleasant condition. There is some extremely helpful advice here already. One of the most important things that you need to do for yourself is ask questions. Ask your doctors, nurses, PA, anyone that is involved in your care. I am sure they will be able to explain the odor and suggest ways to eliminate or improve it. I still go to all of my doctors appointments with a written (and sometimes very long) list of questions. The best part is I get the answers. You know your body better than anyone, please don’t be afraid to advocate for yourself. Please let us know how your treatment goes and how you’re doing. You got this💪

@jade2026
Please I have just been diagnosed with this squamous vulvar cancer. Can anyone say if chemo; protron radiation, anything can be dind to shrink it first? They want to do surgery first, Kersting it’s a really big surgery. Radiologist says “looks like it has spread to lymph nodes”. I’m ready to plan my funeral, so worried and don’t know anything about this, they just keep saying it’s a really big surgery??! They want me to talk to a plastic surgeon and anesthesiologist. Does anyone live through this surgery and can you walk after the surgery please please. I appreciate this so much. Thank you.

@lindarosemanweiss, this must be such a shock. For most vulvar cancers, surgery is the first treatment. Radiation therapy and chemotherapy may be used before surgery to shrink the cancer. This may allow for a less extensive operation. You can read more about effective treatments for vulvar cancer from Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/vulvar-cancer/diagnosis-treatment/drc-20368072

I can understand you're worried. It's a lot to absorb and many decisions, appointments and information. But not time to think about the end. I'm tagging fellow members like @wheaton @tammielynn @bobette1 @kanderstag @jakofin, who can share their experiences with surgery and tell you more about what it was like.

Linda, what type of surgery is being recommended for you: complete or partial vulvectomy? Has radiation or chemo been suggested to have before surgery? How are you doing?

@colleenyoung Thank you for all of this great information..including the links🥰My journey ended in success, but after a painful decade of very slow steps. Chemo and radiation were not offered for this type of cancer back in the 1980s. Thank you for directing this to participants who are just beginning their CURE..hopefully they’ll share it with their local physicians, and these protocols can be incorporated rapidly. 👏🏻

@tally9004 I have vulvar cancer. Beginning April had biopsy. Two weeks later more biopsies. June 5 nine biopsies under anesthesia to map out surgery. June 15 had partial radical vulvectomy and some removal of vagina. I went with a conservative surgeon instead of one who was going to do a major scoop of everything. She wanted to save as much as possible including lymph nodes. Am healing but had a tear and infection so healing more challenging. May need more later but am glad with the approach I chose. Everything seemed slow in terms of appointments and surgery. But this cancer many years growing.

@colleenyoung thank you so very much for your replies. They want to do a full removal of my vulva and removed my lymph nodes surgically and the Plastic Surgeon will take 8 inches off the top of my thigh and 8 inches on the inside of my thigh muscle and then reconstruct a hole in there along with I’m hoping save my Eureka and my recto area. And then I would be 30 to 45 days in skilled nursing with an epidural and unable to do any kind of sitting at all ever until it heals, they said they were standing up, of course, for whatever to avoid Blood class I guess and then I will have to go on our anesthesia to change the Band-Aids. I was hoping and praying and I asked both of the surgeons two and three times if there wasn’t a way that we could shrink these before trying to take my entire and area out like this. I just kept thinking there’s got to be a way to shrink these things and I know in St. Louis is 2 to 3 proton radiation machines here and have heard in the last 10 years how great they are and just was hoping and praying there was a miracle somewhere to get these things smaller and not have to take everything out like this I am 73 and have very bad neuropathy diagnosed 12 years ago with that and having using Rollator and Walker and Cane‘s and getting around and loving life I just was diagnosed a year ago with diabetes and I really really really am worried that I may not make it through this five or more our surgery they said, and then the recovery part has me very fearful. Do you know anyone I can talk to there at the Mayo Clinic and or how I get an appointment to talk to someone, please and hopefully pray that they could have some answers for me besides the words “No”. God bless you all thank you so much for sharing with me. I feel so lost and helpless, and you are giving me. Hope no one has ever heard of this.

I ‘m so sorry that I have no advice to offer you: only prayers for you. Please know that others are thinking of you.