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Vulvar Cancer

Vulvar Cancer

Posted by Lorsteel on Mar 27, 2015 3:00 pm

Dear Female Cancer Patients & Survivors,

Since this is only a female cancer, I hope to hear from a woman out there who has, or has survived vulvar cancer.  How and where it was treated and what the outcome was, as well as any other helpful advice that you may want to convey to me.  It would be much appreciated.
Sincerely,
L

Re: Vulvar Cancer

Posted by joey on Mar 27, 2015 3:14 pm

I am afraid that I have not been diagnosed with this particular kind of cancer. Mine is uterine cancer. I must confess that I have not heard of vulvar cancer.  What were your symptoms and how was it diagnosed? If I can help you in any way. Please ask.

Re: Vulvar Cancer

Posted by Lorsteel on Mar 27, 2015 3:46 pm

Dear Joey   The vulvar is the lining of the inside of the vagina and only 2% of women get this type of cancer, who are usually over 65 years of age).  It is specific to this area only, which is very delicate as you can imagine and is a cancer growth ... not unlike a form of skin cancer, only worse and can spread to organs above (example: the urethra) if not treated.  Sorry, to hear about your uterine cancer and wish you every success in your treatment.  Sincerely, L

Re: Vulvar Cancer

Posted by Heathercook on Nov 19, 2015 8:49 am

Hello:  I am now 62 and was diagnosed with vulvar cancer (caused by HPV) when I was 30 years old.  I knew nothing about this at that time.  It began with a horrible itch and I thought maybe I had a yeast infection.  I had never had a yeast infection, but listened to my friends who had.  Went to the doctor and he asked me "how long have you had this white patch on your vulvar"?  I had no idea what he was talking about.  The next day I was sent to the hospital for a biopsy and it came back positive.  A week later I was operated on (vulvectomy).  I'll be honest.  It was probably the most painful surgery I had been thru and was left with a horrible scar.  Six weeks of recovery.  The only thing I can say here is young girls should get their HPV shot.  When I listen to the nay sayers about getting this shot makes me very angry.  I wish you well.  Be strong as it will get better and I'm sure that the surgery process is much better now than it was 30 years ago as this was a topic that no one ever talked about.
 

Re: Vulvar Cancer

Posted by Henpen on Mar 4, 2016 8:17 am

Thank you Heather for this post. In addition to having the 'cyst' that turned out to be cancer removed in 2013, I had Vaginal reconstruction due to prolapse. It was excruciating. I was told my response was 'unusual'. Of course your post makes me realize that all the manipulation and stitching of the vulva was responsible not my 'weakness'. 

Re: Vulvar Cancer

Posted by Barb19 on Jul 16, 2016 8:38 pm

Hi all- not sure there are very many of us on this forum with this type of cancer and still don't think it's much talked about....l was diagnosed with lichen sclerosus about 2 years ago and have had a small ulcer on the labia for all that time. This year's biopsy came back positive for pre-cancerous cells and I have had a local vulvar excision, which removed the ulcer and additional tissue, which came back cancerous. I'm now waiting for the appointment with the Gynecological Oncologist to see where we go from here...  Meanwhile have been reading any number of horror stories (and some positive) on the uk macmillan.org website about this type of cancer. Feeling more than a bit afraid about what's to come be they tests, surgery, radiation and side effects and outcomes, but think the waiting game is excrutiating.  Anyone else in this boat?

Re: Vulvar Cancer

Posted by StuffNonsense on Jul 17, 2016 10:48 am

Hi Barb19 - I, too, have been diagnosed with vulvar cancer, and have just had surgery to remove the tumour and surrounding tissue. It's a rare cancer, and it's difficult to find solid information about treatment. I'm in BC, and so the provincial team of gynecologic oncologists was consulted, and they have mapped out the safest course of action for me. Where are you located (if you don't mind me asking)?

I know how horrible it is to wait - your mind can seize on the worst case scenario, especially at night (for me). What's been working for me is asking all my friends to phone/ visit to keep me company: I created a private Facebook page where I can let them know what is going on, and made a calendar so that the visits were spread out and I could rest. I find being with people who care about me makes the biggest difference. I also see a counsellor regularly, and connected with a sex educator to talk through my fears about vulval surgery. I was connected to a vulvar cancer survivor by the Canadian Cancer Society, and we talk on the phone regularly. She's been an absolute godsend!

How are you feeling after local excision? I'd be very happy to talk more if you'd find it helpful. Wishing you speedy healing and a good appointment with your oncologist :-)

Stephanie
 

Re: Vulvar Cancer

Posted by Barb19 on Jul 17, 2016 6:14 pm

Hi there StuffNonsense- I am in Ontario. Thanks for asking- The local excision is almost healed after 4 weeks and the appointment with the GO at the major hospital - Royal Vic in Barrie- is in a week and a half. I suspect she will order tests to determine whether it has migrated to the lymph nodes or not and a ream of other tests and then map out a treatment regime. I think it would be a good idea for me to call the Canadian Cancer Society to see if there are survivors in my area to talk to and I expect the GO and the oncology team will be able to set-up counselling..although to be fair I don't share my feelings well.

But, until I meet with the GO, I haven't shared this beyond my husband and a couple of really good friends. I haven't shared this with our adult children, as all I have to tell them right now is "I have cancer" without any context of seriousness. That will come soon, I expect.
How  is your surgical site healing and is there other treatments they are pursuing? And when did you tell your friends and family?
Barb 

Re: Vulvar Cancer

Posted by StuffNonsense on Jul 18, 2016 2:45 pm

Hi Barb - I was really careful telling my family and friends. I waited until I felt that the time and conditions were right, and I only shared the details that I was comfortable speaking about at that time. So, some people know everything (my daughter and a few close girlfriends), others know a bit more, and some just know that I've had surgery. I've used my gut feelings as a guide, as well as the reactions of the people I'm talking to - if they can handle a little info and be supportive, I give them more (if that makes sense).

I had a radical (deep and wide) excision 6 weeks ago, had a post-op infection for several weeks, but that has cleared up now, and I feel like myself again. Still not sitting directly on the incision, but it is almost completely healed and I'm in no pain. In my case, they removed my sentinel lymph nodes and found a microscopic tumour, so I will be having a PET scan and further treatment - I see the oncologist tomorrow to discuss the provincial team's recommendations.

What I found helpful about talking to a fellow survivor was the practical tips - she told me to buy a comfortable long dress to wear after surgery so I wouldn't have to worry about underwear - stuff that the doctors don't always think to mention.

It's great to hear that you're almost healed at 4 weeks, and if you'd like to chat some more (either before or after the oncologist visit), I'm happy to connect - this really is a rare cancer, and (for me) talking to others reduces the unknown.

Stephanie

Re: Vulvar Cancer

Posted by Pokie on Nov 30, 2016 11:24 am

HI ladies
I have been diagnosed with vaginal cancer, which is also rare. I have not been able to find anyone who has this diagnosis to speak to. Or find much information on it, which makes me feel like I am swimming in the ocean with no land in sight. I will be seeing a plastic surgeon to discuss vaginal reconstruction, which is another unnerving procedure to consider.  Surgery will be on Dec 19th.  Unfortunately right now I have heard the peer support is being revamped. I had a great peer support person when my anal cancer was diagnosed, she was a blessing. 
wishing you all the best in your recoveries. 

Re: Vulvar Cancer

Posted by StuffNonsense on Dec 1, 2016 12:28 pm

Hi Pokie - I'm sorry to hear about your diagnosis. I can understand feeling really alone, and wanting to connect with someone who can provide encouragement and information. 

I don't know whether you've checked the following websites, but am passing them along. I'm in a support group for women who have completed treatment for gynecologic cancer, and was given this info at the group:

http://www.cancer.org/cancer/vaginalcancer/detailedguide/vaginal-cancer-what-is-vaginal-cancer

http://www.macmillan.org.uk/information-and-support/vagina-cancer#DynamicJumpMenuManager_6_Anchor_2

You might be looking for more of the personal "been there - this is how it was for me" info that you'd get from peer support. I do hope that you can connect with someone on this site who has the same diagnosis as you. In the meantime, I'm happy to keep talking if you'd like a listening ear - my experience is different, but there might be some helpful overlap. 

All the best to you too

Re: Vulvar Cancer

Posted by gracemd on Dec 1, 2016 1:01 pm

Hello Pokie
It's too bad that these feminine cancers has to affect us women at one time or the other, but take courage, since we all need that to handle challenging situations in life.
Cancer of the vagina is a squamous cell cancer that could be either squamous cell carcinoma or adenocarcinoma.
Both are curable depending on the stage at which one was diagnosed.
Another good thing is they may not be very aggressive like some breast cancers.
Survival rates depends on type of cancer, general health of person affected and response to treatment.
Keep your chin up, boost your immunity with nutritious food and excercises and you will do well.
Like StuffNonsense wrote, you can get more information from cancer.org and also from your oncologists who is the specialist in this field. All the best.
GraceMd Mastectomy

Re: Vulvar Cancer

Posted by Pokie on Dec 2, 2016 10:17 am

thanks GraceMD,  mine is SCC as it is the same pathalogy as the anal cancer I had removed in June. Just a shock when things appeared to be going so well. Went to a workshop held by Inspire Health (BC org) it was great and good information. Great resource for accessing other Drs, Dietitians, Counsellors and Exercise therapists (no fee) for complementary help. 
Will be having surgery on the 19th of Dec. 
Onward and upward,..

I have felt comfortable sharing the diagnosis (after I have the plan in place) with others mainly to remind them NOT to ignore their bodies when things are not quite right. Feel it is important for me personally to reach out in that way.

 

Re: Vulvar Cancer

Posted by gracemd on Dec 3, 2016 3:31 pm

Please accept my best wishes and thanks for reaching out to all of us, you are a source of inspiration.
Keep that positive outlook of yours, it will carry you far.
GraceMd Mastectomy.

Re: Vulvar Cancer

Posted by Newbiejulie on Feb 3, 2018 7:57 pm

Hi everyone, I am new to this site.  I stumbled across this thread and wanted to reach out although it seems to be from 2016 so unsure how active people will be from here.  I see that a couple here have had vulval cancer.  I have lichen schlerosis and was diagnosed with Squamous cell carcinoma on my right labia.  Have had a partial radival vulvectomy and now undergoing 28 radiation treatments.  Luckily was not found in my lymph nodes when had a sentinal node biopsy. Just tough finding someone with that type of cancer in that area as seems pretty rare. Would love to hear from you ladies :) 
 

Re: Vulvar Cancer

Posted by Elsie13 on Feb 4, 2018 5:08 pm

Hi Newbiejulie‍ .  Sorry to hear about your diagnosis.  Maybe you can connect with Pokie‍ whose situation is a bit different, but maybe there are some similarities. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Vulvar Cancer

Posted by Plannergirl66 on Apr 27, 2018 6:23 pm

Hi newbiejulie I was diagnosed with melanoma of the labia on Monday April 23rd 2018. I too can not find much information out there. I'm still waiting to heard back from gyo OB when my appt to see a dr at princess Margaret or sunnybrook. Waiting is the worse as you don't know what yo expect going forward.

Re: Vulvar Cancer

Posted by Elsa on Apr 28, 2018 12:06 pm

I’ve had vulvar displasia (VIN) which eventually progressed to invasive vulvar cancer. I was also eventually diagnosed with vaginal cancer and went through approximately 20 years of various treatments (mostly laser surgeries and excursions for the vulvar displasia but also radiation for the vaginal cancer) before having both a vaginectomy and vulvectomy last year. Unfortunately they also removed the anus and urethra which has left me with a colostomy and urostomy... but at 56 life is pretty good and so far I remain cancer free (NED - no evidence of disease). If anyone has any questions, I may be able to help in sharing what information I have.

Re: Vulvar Cancer

Posted by Elsie13 on Apr 28, 2018 3:22 pm

Elsa‍ , Glad you have found cancerconnection. Great to hear that you are NED. Perhaps Plannergirl66‍ and Newbiejulie‍ will share their stories with you. Yes, Plannergirl, waiting is terrible as many of us have all kinds of horrific scenarios going through our minds. It's always best not to get ahead of ourselves, of course.  Once the doctors come up with a plan specific for you, you will probably feel much better about things. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Vulvar Cancer

Posted by alameda on Apr 29, 2018 9:58 am

April 29, 2018

Hi: I am new to this site.  Just found it last night.  I have had VINIII over the past 20 years.  Have had a small surgery but multiple laser treatments.  My gyn said the next time she would prefer to perform surgery rather than laser.  It seems that all of a sudden, I have a thickened wart like left labia and a sore on my right labia.  I also have what looks like genital warts.  I have my appt. on Thursday, May 3 where she will certainly take a biopsy.  I just wanted to check base to see if there are still other women using this site.  I have constant headaches now which I assume are from stress.  At any rate, I'll email more about my appt. May 3rd

Re: Vulvar Cancer

Posted by Elsie13 on Apr 29, 2018 7:04 pm

Hi alameda‍  Glad you have found cancerconnection, but sorry about all these treatments you have needed. Yes, please let us know what happens on May 3rd. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Vulvar Cancer

Posted by antsy on May 8, 2018 3:07 am

I had day surgery May 1st for invasive squamous cell removal or biopsy- waiting to hear from gyny doc - how long does it take for BC cancer services to get back to doc with results? I have had colon cancer 12 years ago and have been ok now this geez

Re: Vulvar Cancer

Posted by Elsie13 on May 10, 2018 3:48 pm

Hello chevans‍ . Glad you have found cancerconnection.  I had ovarian cancer in 2016. I had my hysterectomy in Montreal, mid-Nov. 2016. They told me on the evening after my surgery that I'd  had ovarian cancer.  But then I had to wait 4 weeks for the official pathology results. So mid-December was when I learned what type of cancer cells they found, what stage and what the treatments would be. Others on this site have said it's often 3 to 4 weeks for these results. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Vulvar Cancer

Posted by Lacey_adminCCS on May 10, 2018 3:56 pm

Newbiejulie‍, Plannergirl66‍, chevans‍, alameda‍, Elsa‍ I hope you are all able to connect. 

It might be helpful to take a moment to introduce yourselves again below and update us:
When were you diagnosed?
What treatments have you had?
How are you doing now?


 

Re: Vulvar Cancer

Posted by Plannergirl66 on May 10, 2018 4:56 pm

Hi everyone Had my surgery yesterday. They moved it up qickly originally schedule for the 18th. Dr had cancellation so I moved up the list. Came home today. Little sore and confused about dressing rtc. Because I m a large person. I have to watch more closely for I infection. If anyone would like to chat just drop me a line. Everyone take care.