Vulvar Cancer

Hello,

You may want to contact other vulvar cancer survivors through the CSN internal email system. Sometimes members do not check the boards frequently. It is also possible that they do not have response to a specific thread. I wish you well and continued health.

Take care and be well,

Dana
CSN Dana

In 1998 I had a radical vulvectomy in June and in July my leg lymphnodes were taken for prevention purposes. One leg now has lymphedema. I am 66 yrs. old and still lead an active life,but things are not like they used to me. I can't get up and down stairs very well and in and out of cars. I am happy to be alive,but would like to hear from someone that has had a radical vulvectomy. My clitoris was removed. I am cancer free.

lisaflorida said:

FIRST APPT WITH GYN ONCOLOGIST TOMMORROW
I had a biopsy done two weeks ago that came back squamous cell cancer. my dermatoligist wanted to do mohs surgery but my gp referred me to gyn oncologist. I am a bit overwelmed and was wondering at the start of your treatment what questions do you wish you had asked?

questions for gyn/onco
Hi lisaflorida,
sorry to hear of your diagnosis, I am a vulvar cancer 'conqueror', I had surgery on Jan 12th of this year. I did not have squamous cell, mine was an adenocarcinoma, but I think you are wise to have a list of questions for doc ahead of time. I would suggest that you do some research regarding your type of cancer and the treatments, and see what your options are and make a list of questions for doc, also take someone else along with you, a second pair of ears is important. I used ACS website to look up my cancer and found it very informative, also there is a site called vaco.uk that has a lot of info too. These are a great starting place for you, and you will see that you are not alone. I have never been able to find another woman with vulvar adenocarcinoma, so I felt very alone, but being able to get feed back from others with similar vulvar disease was helpful.
One thing I would definetly question is if the doc feels that all lymph nodes need to be removed, that is standard procedure for this surgery. I did some research and found out that there is a new procedure called a Sentinel Node Biopsy, where by surgeon will take out 1 node and test it in operating room, if it is clear of cancer, they leave the rest of them alone, if it had cancer, they usually take them out HOWEVER, my gyn/onco tested 1 more and while the first one had cancer, the second one did not. He did remove 3 others and they were clear also, so I only lost 5 total, rather than many dozens of lymph nodes that are usually removed. This is important because there are many possible complications with the removal of these nodes. Not all gyn/oncos are skilled in this procedure, and there is a preliminary injection of a radioactive dye into tumor bed that will identify the nodes closet to the cancer, and so an experienced radiologist also needs to be available.
Another website that has a lot of info is Wcn.org, womens cancer network, go to 'vulvar cancer' on left column, and then to 'advances in vulvar cancer', it talks about this procedure.I wish you the best, please ask a lot of questions and if you would like more info, please feel free to e mail me directly : jewelsbysuz@hotmail.com

lisaflorida said:

gyn oncology appt
thanks for the info. I was very pleased with my Dr. she took a great deal of time answering my questions. Looks like I just have VIN III, in-situ non-invasive. Scheduled for surgery next friday, they will not know for sure that it has not invaded underlaying tissue until surgery. wide excession instead of laser so they can examin tissue. I had orginally had the area biopsied by my dermatolgist it came back squamous cell cancer. (I never thought to apply sun screen there, haha) He wanted to do mohs surgery, I have had this done on several baselcell skin cancers in the past. After talking to a college friend who is a gynocologist I ran back to my GP who reffered my to the gyn oncolgist. I am a pharmacist and have been in health care for 20 years, but it is a whole differant matter when the patient is yourself. I scared myself with all the possiblities so hopefully surgery with no lymph node involvement and no radiation. wish me luck.

gyn/onco appt.
I certainly wish you the best outcome in your surgery and treatment.As a pharmacist you must have a certain amount of insight into medical things, but I am sure as a potential cancer patient it is overwhelming. I would still mention Sentinel Node Biopsy to see if you would be a candidate for it if nodes are involved, I know not all vulvar cancer qualifies for it, but you can never be too prepared. I did have radiation and did pretty well with it, only had burns for a couple of weeks, it was actually easier to go through that than the total thyroidectomy I had in August and the complications I had from that surgery. But I have conquered both cancers for now and will move on with my life. Please post again after your surgery, when you feel up to it, I would like to know you are o.k. My prayers are with you, hang in there sista!

lisaflorida said:

surgery last fri
surgery was much easier then I expected. outpatient surgery and was home by 2pm. given pain meds and antinausea meds. so slept much of the weekend. I am able to lay and recline sitting is painful. the lesion was on the inner lips so I just have a long line of stitches, nothing missing. wont now is successful in getting it all until the final path report next monday. hope for the best. thanks for your support.

your surgery
I am so glad you are doing well, I hope your pathology comes back as good news. Sitting was hard for me too for a long while, but I think that's because I did lose about 3/4 of vulva on one side along with 1/2 my labia on same side, but you know now it has healed completely, and while I know I had an invasive surgery, I hardly ever think about it. The 5 1/2 weeks of radiation also made sitting, walking, and even wearing clothing very challenging, but I did get past it all. My radiation oncologist said my gyn/onco was an 'artist', because of the way doc made incision and stitches. I was grateful I did not have to have a 'flap' done.
I am sure you were given lots of hints for after care of surgical site, but one thing I was told was to use a squirt bottle, like a ketchup bottle, to irrigate the area after going to the bathroom. I bought a new one at walmart, filled with tepid water, it was very soothing.
It is important to keep area clean so as not to get infection.
Please post again when you get your path report back, I will think of you every day, hoping for a good outcome for you, hang in there.

Judithd said:

Vulvar Squamous Cell carcinoma Grade 3
Hello Lisa,

I had a Squamous Cell Carcinoma grade 3 on inside of my Labia Majora. Bowen's disease was also in a part of the biopsy. It was dime size and purple in color. I am also in the Medical Field 25 years which I thinks sometimes makes it worse. I went to several Oncologist Gynecologists and Onc Dermatologist before ending up at MD Anderson in Houston for care. Just was not impressed with the Doctors I went to. They could not seem to answer my questions which was scary.

I also have a history of skin cancer BCC's and SCC's on my face, chest, arm and hands. Strong history in my family of Melanoma. I am HPV Negative and do not have any itching or symptoms that many women with VIN3 complain of.

It has now been 11 months since my surgery. I was going monthly, now to every 3 months for a colposcopy and am seen at the OncGyne and OncDerm. So far so good until this week when I started hurting in that area. So I have to call tomorrow and see about getting checked out.

I wish you the best and would like to know how you are doing. I asked about the biopsy of the lymphnodes and it was not done on me. I wish it would have been done. Just for piece of mind.

I know I am not alone having a skin cancer where the sun don't shine : ) !!!!!!

Judy

10 days post op
hi judy

just had my 1st post op appt. went good I have a few stiches that torn out so that area is open and sore. dr did not want to restitch thinks it will just fill in. she says the lesion is completely excised and was not concerned there is any lymph node involvement. I am with you though I would of liked to have some test on lymph nodes. my pap was hpv negitive but dr says I could still have hpv to have caused the lesion but they wouldn't test for it because result wouldn't effect treatment. again it would just be nice to know, i think chances or reoccurrance is greater if hpv related. I am 47 and was the youngest in the gyn oncology office by at least 20 years, I think they assume it is probly hpv related just because of my age, my gp says I just probly just thank my genes for this as well as my skin cancers.

I do agree with you that sometimes being in the medical field sometimes makes at least your anxiety worse. I find my expectations of health care are greater and most of the time I am disappointed with the explainations that are given. It is really scarey to think if I had followed my derm drs recommendation I would have had mohs surgery done under local in their office. I had planned on driving to and from the surgery and just taking 2 days off work.

let me know how your appt went hopefully it is something minor.

thanks for all yall's support.

lisa

Hi I’m Diana… I hope you all are still on here. I’m 69. March of this year (2021) i was dx with vulvar cancer. There was a large tumor on my perineum. I had 7 weeks( 5 days a week) of radiation and chemotherapy. 7 times. My last radiation was June 16, 2021. I need advice. My whole genitalia was radiated. The pain is awful… is there anything that helped you? Does medical marijuana help? Pain pills barely touch the pain. Any advice would be great.

I was diagnosed with IDC Stage1 Breast Cancer Dec 17th, 2021 and Extra Mammary (rare) Paget's cancer of the Vulva early March 2022. Since my mom died of uterine cancer, I decided to be proactive and get most of my health care under the Oncology umbrella late Feb 2022 after completing my breast cancer surgery and radiation. My onclogist gyno at did a routine check. I had been diagnosed 5 years prior with lichen sclerosus - a fairly common occurrence in women over 60. My most common complaint was itchiness. My oncology gynecologist thought the area looked suspicious and biopsied. Pathology diagnosed Paget’s. Paget’s is rarely diagnosed because it mimics Lichen Sclerosus so closely and oftentimes starts as Lichen Sclerosus.

The next week I went to my gyno oncologist (surgeon) who had me scheduled within days for surgery - to remove the tumor and hope for clear margins. This is not an incorrect path because it is taught in medical training. I asked for a pause while I researched. Paget's has a 60% recurrence rate and once the surgery option is taken - generally one follows up with multiple surgeries. I opted for a second opinion at MD Anderson in Houston. Dr. Micheala Onstad Grinsfelder is a specialist in Paget's in the MDA gyno oncology department and sees 2-3 Paget's patients a week and is very up to date on the most beneficial treatments - her preferred treatment is 5% Immiquimod applied three times a week overnight. Recent studies have shown it has the same efficacy as surgery. She is very knowledgeable (and kind and empathetic - really just plain marvelous :) and has constant experience with the disease and benefit of close observation. I know I am extremely lucky to have found her ...I hope to be able to share this with women that have vulva cancer - and save them some of the anxiety and heartbreak associated with the quick surgery answer.

I am currently in my first month of treatment with the 5% imiquimod treatment. The “itchiness” is making me a crazy woman but I am so grateful to have an alternative to surgery - likely followed by other surgeries. Happy to keep you updated on my journey.

I also found a handsfree vulvar mirror online (nyssa) that has been super helpful with cream application ..just fyi...

anyone have any suggestions for horrible itching/rawness ? i saw someone found some relief with a lidocain cream. I have tried : alternating with fresh air, aloe vera, aquaphor diaper cream, oatmeal colloidal baths, neosporin on it currently - ...and practicing yoga deep breaths when the urge strikes (constantly) ...may try benadryl today ..

yesterday i wore a sanitary pad with an oatmeal colloidal soothing cream in cotton panties and it helped ...normally im 'airing out/sans panties .."

just asked my md anderson doc if i should try the clobetasol propionate (steroid cream) that was prescribed when the diagnosis was lichen schlerosus ....hope any or some of this info helps someone else out there....

I am recently diagnosed with vulvar cancer. A result of lichen sclerosis. Waiting to go for pet scan. So scary. Not sure if the pain I have now will be nothing compared to after possible surgery . urinating is so painful. Any suggestions besides lidocaine & barrier creams? I do use a squirt bottle but that is difficult if I’m out. Help!