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Basal Cell Vulvar Cancer - Never heard of it, now I've got it.

JustPeachyMawMaw's picture
JustPeachyMawMaw
Posts: 5
Joined: Dec 2017

Hello!

I was just diagnosed with Basal Cell Vulvar cancer.  Seems that it is pretty rare as far as being vulvar AND being basal .. in that  basal cell is normally sun-exposure related.

And I don't do tanning beds and I'm not a nudist. 

I haven't seen the oncologist yet, I have only gotten the biospy results back two days ago.

I'm just puzzled over the whole thing but have had family members say "Oh, its Basal Cell? Ah, thats easy.  You're good, that's nothing." 

Anyone out there have experience with Basal Cell Vulvar cancer as opposed to squamous cell and can tell me what to expect?

I'm a bit confused by what I read and am uncertain as to if it truly is "nothing" like most basal cell skin cancers or because of its location, is it a bit MORE than "nothing."

Any comments or help would be TRULY appreciated. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

JustPeachy, I'm sorry, I have nothing to offer.  Please be sure to come back after the dr visit and share with us all.  You never know when you might be able to help someone else who finds themselves in your shoes.  

Take a breath and you are in my prayers.

JustPeachyMawMaw's picture
JustPeachyMawMaw
Posts: 5
Joined: Dec 2017

Thank you!!!!  I will come back and share, because yes.. someone else may come looking.    I haven't found a ton of information.. other than there is no VIN, its not HPV related,.. I don't seem to have any of the "other" indicators or anything.   I don't know if I get a partial vulvarectomy, which is what I am thinking will happen?  I just don't know a whole lot and there is NOT a lot "out there" for this type of Vulvar cancer.

And its REALLY hard to talk about with family... "You have WHATT?"  "What is a Vulva?"  "Where is that?"    lol

 

hope4everyone
Posts: 6
Joined: Jan 2018

Hi:  I joined just now just to reassure you!  This is the "one of the most treatable" cancers you can have down there;  in a relative sense.  I know none of us wants to experience cancer, at all.

The biggest issue for me was getting treatment; my first gyn didn't recognize it, did swabs, and prescribed ointment, but stopped short twice from doing a biopsy.  I had an old book by a gyn that stated anything down there needed a biopsy and you should press for one.  The spot was not going away, so I was very nervous about it.

 

I changed doctors and my second one was stellar.  Not only did she address it, but she took it off the very day I saw her in a professional manner!  It wasn't my favorite day, but I was glad for action. She used a local anesthetic and she knew what she was doing. Luckily, she got it totally with clear margins and there was no further treatment except surveillance!  This was January 2017 and it is still gone!   Recovery from the wide  excision took about 6 weeks; I dabbed lidocaine on it for pain relief and the stitches she took dissolved in that time period.  Now, you would not know it was there!  I had read this was rare, but she had seen it several times before.  The chance of spread is is very, very low and the prognosis is excellent with excision.  The doctor ( and you) will just need to check down   there  from now  on in case of recurrence.    I am hoping your story is just as good; I did not need referral to an oncologist as margins were clear.  I felt blessed to find my doctor; her deceased husband had been a gyn oncologist, so she was very knowledgable and proactive.     

 

I wanted to pay it forward as I had my fears relieved this time last year!  ( I found the spot in August 2016 and it took three non-productive visits to the first doctor before I decided to go to the new gyn in January).

 

My spot was very small,  It was less than 1/2 a centimeter, but it was on the outer edge of my labia so I found it quickly.  Though the spot was small, she did a wide excision.  My husband and mom who had seen the spot were surprised at the big swath of stitches.  But, I think the doctor had an inkling what it was and did the protocol per her training.  I scared myself with Dr. Google from the time I discovered it and she was very practical and let me know that "all was well" after the pathology came back.  She checked the site after two months ( it was invisible by then) and will continue to monitor it.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

hope4everyone, thank you so much for coming here to share (and help) others!  It can get a little quite here so I would ask that you stop in occassionally and see if you can help another woman.  I am proud of you for findig a new doc, pushing for answers and being your own advocate.   

I am so happy for your success against the beast. 

hope4everyone
Posts: 6
Joined: Jan 2018

I love your name...that is true for all of us.   I am pretty introverted, but I felt like I had to speak because I didn't see too many people with this type of CA  on the boards when I was looking everywhere for reassurance.   My best friend from school is battling uterine cancer right now; it spread to her bladder-so I am want to do what I can to help with my experience.  I sure do hope that Just Peachy's story will be like mine.   It is sobering that you have to be vigilant from now on, but reading the stories of the strong women here is so inspirational.

I have an adult son with severe autism and seizures, so I know that life can take a turn-but he has also taught me that you just keep on going as best you can.

 

 

hope4everyone
Posts: 6
Joined: Jan 2018

Encouraging update for anyone with this form of CA.  Last week, I felt a lump on the opposite side. This time it had a dark dot on top/nearby.  Needless to say, I was worried; I almost felt superstitious about my posting here as if my story was really over ( though I said and know that I will always have to monitor).  I got into the doctor and this time it was just a clogged gland/sebaceous cyst and she was able to take care of it.  So,  I guess the lesson is to be mindful, but don't panic...   Easier said than done.   It's strange; I probably had all sorts of things over the years that were benign and didn't even know it.  The innocence is gone on that score now.

 

She also said she had had one patient with recurrence of  BCC of vulva, but it is slow growing and can be caught once you have had it and the doctor checks with a scope and eye each year.  One older lady has been checked for 15 years and it hasn't come back. So,  that was good to know.

hope4everyone
Posts: 6
Joined: Jan 2018

I felt I should update here even though I am not sure that anyone will ever see this. But, when I was lookiong for someone else with this particular diagnosis, there wasn't anything out there at all.  So, I feel like I owe it to the one person who might come upon this.

I have had a couple of false alarms down there since 2017 though my gyn was always ready to check out my concerns.  One was a sebaceaous cyst and the other a normal vein. I decided a few months ago to rely more on feel versus vision as that was how I found the first lesion.  Then, one Friday at the end of last month, I felt a weird stinging down there.   At once, I knew it was a reminiscent feeling from the last time.  I looked and saw a tiny dewy pinkish red dot in the same vicinity of the first lesion.  I had foreboding from then on.

 

The doctor saw me early the next week and she honestly said she wasn't sure that it was ominous because it was so small and innocuous this time.  It had been a small pimple sized bump last time.  However, she removed it and decided to send it to pathology before she had finished.  Another basal cell and she had to go back again to get clear margins.  For some reason, I was more panicky about the margins than the initial diagnosis since I had suspected it.  So, it looks like it will be a life of real vigilance from now on. 

 

I feel a bit abashed to even fuss because it was caught very early and my brand of vulvar cancer is the "best" case scenario as far as vulvar cancer goes as it can be treated with local wide excision and doesn't need radical surgery, lymph node dissection, radiation or chemo.  It behaves as basal cells do elsewhere; it is very indolent, very unlikely to spread and it mainly a threat to the local area.  And it is much rarer than the other forms that are much more worrisome.  So, I am grateful -but a little freaked out and sad that I may be in line for years of excisions down there.  As we know, even the local wide excisions aren't very fun. 

 

So, I guess I am grateful and scarred...  I do really understand that a lot of this is up to me which is somewhat daunting.

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