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I had posted before about thinking I had LS for many, many, many years only to find out it was pre-cancer cells. Even my Primary called it LS visually. It took a visit to another doctor to get the Mona Lisa treatment to have a biopsy done. After a referral to an Oncologist - I have had this surgically removed.
After my visit yesterday with the Oncologist - she tells me that even though the margins were clear, the pre-cancer may come back. I am to watch for the itching.
I itched all the time before. Again, please get a biopsy to be sure what you are dealing with, especially if you are itching. Don't make my mistake. The location of this illness, allows us to just 'deal' with it. I wish I would have done things different. Be aggressive. Love to all of you.
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So glad your margins were clear 👍
i have had LS for 6 years now . i have had a few questionable areas my derm biopsied. In September i had a itchy bump on my clit . It was squamous cell carcinoma. October i had a radical vulvectomy with the removal of my clit and bilateral lymphnode dissection. My nodes were ckear and margins clear too . Following up every 3 months. Last visit another biopsy of a questionable area right inside the opening of my vagina.
This was the worst surgery i have ever endured . Please follow up routinely and advocate for yourself if you see something that looks or feels unusual.
I was sorry and distressed to hear your story. I can only hope you had friends and family there to support you and pray that you have healed and can get on with your life. Blessings.
Thanks for your response. This is an ugly process and very scary. You are being very aggressive and smart. I too had a radical vulvectomy. Such an experience. Lots of love your way.
rkym, I am so sorry to hear you have had to go through such extreme surgery. Were you diagnosed with LS 6 years ago or are you only now aware that you had LS symptoms? I think most of us are told if we use steroids consistently it will not progress to cancer, though it may be wishful thinking. Did you have extreme scarring over or just one itchy bump? Were you being treated by a gyn initially or always seeing a dermatologist? The gyn I was diagnosed by was so much more thorough than the dermatologist I have seen most recently (who prescribed Tacrolimus along with using steroid and hormone cream). I can't tolerate the level of medication use the derm instructed me to use and have just taken a week off from using any. I'm sure your experience has all of us rethinking what we should be doing.
i have had multiple auto immune issues for over 17 years now . Lupus , fibro , autoimmune hepatitis, psoriasis. Most recently i contracted Alpha-gal syndrome. My doctors joke that i have to have the strangest diagnosis possible.
i went in 6 years ago for a routine exam . Figuring my itchies were due to dryness as i hit menopause. I see a dermatologist for other skin issues related to my autoimmune issues and i live in a rural area so fast access to specialized doctors isn't simple . My dermatologist is a mile from me . I trust him . I am a old nurse too , so i prefer doctors who team with me . Doctors have licenses to practice. i am a tough advocate for my own health.
i have had numerous areas that required a biopsy. i strongly suggest people with LS to fully visualize and examine your areas often .
i used clobetasol regularly .
Kym, you are my kind of lady. I love the concept of my healthcare provider teaming up with decisions of my body. I selected my Primary, years ago, based on that thought process. I am a retired Health Information/Medical Record professional.
Hang in there. You are in my thoughts and will be often. I'm here to listen, if needed.
Thank you for your kind words . And thanks for your efforts to encourage others to be more aware of the threat of vulvar cancer.
It is vulva cancer awareness month 😉
this is GREAT advice...we ALL should speak with our doctors and have a biopsy done every other year to rule out any "C".....
I have the itching ans will be making my Biopsy appointment with my GYN.. I pray you will be ok Beautiful!! Thanks for sharing
Your message just made my post worthwhile. So glad you will be looking into a biopsy. Wonderful. Thanks for your kind words.
Thanks for sharing your experience, I really appreciate it for as you say there is something about this location of the body that allows us to just deal with it. I guess it can happen with other parts of the body too where we just get used to a certain amount of pain as normal and it not until something happens that stops us in our tracks as cancer or the fear of it can do. I am looking at starting a vulva awareness diary because one day can just blend into the other and sometimes I forget to use the steroid cream because I am not aware "down there" and the I'll have a stop moment and realise it is quite sore. I will also pay more attention to being aware of the itching and consider a regular biopsy.
Good for you Suzanne - I like that you are thinking of a biopsy. I also like the journaling idea. Yes, the days all run together. This disease is 'crazy'. All the best to you.
Beuhhh.....i dont want to do regular bioosies.... the last one was very painful...for doctor was in a rush to do about 20 other patients...and he didnt wait enough for me to be Frozen properly...oh...no ....i dont want to.
Your post made me cringe. For shame for your doctor to not make sure you were numb. No excuse. They take quite a chunk of skin out too! My doctor took two chunks. I'm sorry you went through that.
You may not need another biopsy. Only if things change. Your doctor should know. Love to you.
Brigitte, Whoever your doctor "is", perhaps he should be a "was." Not making sure your area was numb is unacceptable as most docs are pretty good about trying to get you comfortable. Although I was afraid to do the biopsy, the doctor who did mine numbed the are with topical lidocaine first before the injection. They took effect right away and the shot was worse than the core biopsy. That's what's supposed to happen. I was afraid I wouldn't be able to go to work but I did return the next day. It didn't bleed either. She put silver nitrate on it.
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