vulva cancer

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vulva cancer

by CateCate on Sat Sep 16, 2017 03:32 PM

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Hello,  I am a healthy, 54 and diagnosed with stage ll. vulva cancer.  I am surprised and the lack of information available about this "taboo" cancer.  I honestly have not even told my closest friends the exact cancer I am dealing with.  I had laser surgery 10 days ago to remove Lymph nodes and well as my entire right side of inner lip vulva.   Painful , I now have an infection.  I am fortunate to have a nurse come in everyday to check the wound.  Emotionally this is difficult since I have no one to discuss this with.  Other than my amazing husband and Doctor.    I didn't know this cancer existed until I heard the words from my Gyno.  I had undiagnosed Lichen sclerosis

This was undiagnosed for three years....???  I was given creams etc nothing worked   I got fed up going to the Doctor.

I did however radically change my diet..removed Gluten.  The Lichen sclerosis cleared up! It is an Auto immune disorder.  By then it was to late the cancer cells already invaded my body.  I have decided to employ a ND to further my recovery.

This is a difficult lonely journey .  Part of me wants to stand on a soap box and get the word out....then the private side does not want people identifying me as the one vulva chick.  

However the recovery I am finding slow and painful, my wound bleed constantly.   is this  NoRmal?   This message board is helpful   Thank You all for letting me read your stories

Oh I am a non smoker fitness freak and genrally I thought healthy person...hmm   cancer is cruel 

RE: vulva cancer

by GlitterGalore on Sat Oct 14, 2017 11:30 PM

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Hi I am so sorry to hear your news. This is all so scary. I am new to all this too. I am just beginning to comprehend this all. I haven't found a whole lot of people talking about this either. How are you doing as if now? I just had surgery for HPV VIN 2 this week. And I'm itching like crazy ever since!injust imagine the cells are all over and ready to create more lesions. I find this whole vulvar precancer and cancer totally disturbing. Until a few weeks ago, I was oblivious. I am horrified it will come back and that I will be completely disfigured as the years go on. There has to be a better solution than cutting parts of the vulva out, some way to get rid of the HPV infection that cause the lesions. I've have written numerous scientists about trial vaccines etc. -GG

RE: vulva cancer

by SarahKate on Sun Oct 15, 2017 11:53 PM

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Hello Ladies.  Sorry that you both find yourself in this position.

I had a radical vulvectomy in July and an excision of my anal sphincter.  When they did the pathology they found that the cells went right up to the edges and the procedure would have to be repeated.  In the meantime, my doctor became ill and I had to be referred to another.  I saw him last week and he thought that he could feel a mass in my vulva greater than 1.5cm in depth.  He did a biopsy and it showed as granulated tissue for the part thay he removed.  He tells me that they wont know for certain until they remove the whole part and get it tested.  So, on Wednesday I will be having the whole thing all over again.

I just find the whole thing so personal and revolting.  Also I have fond the response of people who I have told to be quite challenging.  My husband and children have been fantastic.  However others have not acted with empathy and I have had to distance myself from them as I am unable to deal with any more stress than I have right now.

I wish you both well in your journey.

RE: vulva cancer

by SarahKate on Sun Oct 15, 2017 11:54 PM

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Sorry.  I meant to add this link for useful information.

http://www.cancer.org.au/content/about_cancer/ebooks/cancert

RE: vulva cancer

by GlitterGalore on Mon Oct 16, 2017 01:31 AM

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Wow that's a big story. What were your initial symtoms, if any? Have you looked into the research of Gardasil 9 post treatment? They are have some luck with this to prevent reoccurances. Also, be sure to look up "low Dose Naltrexone" for cancer. In specific "squamous cell cancer" since they have done more research for that for head neck and cervical. Assuming that is what you have. Anyways, low Dose Naltrexone has made me feel better and is considered the "why not" choice. Your doctor won't likely know what it is and a naturopath or d.o. might help you better

RE: vulva cancer

by GlitterGalore on Mon Oct 16, 2017 01:38 AM

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I am sorry that you are dealing with this. I can't probably imagine how you feel... having VIN 2-3 has about put me over the top. Also, I think I have something going on in my throat. My head has been to some of the darkest places for the past few weeks. I find my family doesn't even want to talk about it. I was even told my thoughts and issues were psychosomatic, yes that and then more. I wish I was being psychotic. I saw some of the women on here talking about a doctor or practice in Texas? Maybe a well known specialist? I can't recall the name.

RE: vulva cancer

by CateCate on Mon Oct 16, 2017 02:11 PM

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Thank you for the link, very helpful

Sorry for your on going issues, not easy to deal with alone. funny how people are.  I have found myself creating a distance from friends and family because I don't want to discuss my cancer.  My husband and Doctor have been fantastic.  It's like I see people with a clear sense of who they are since being diagnosed.  Don't feel alone , this chat room has been very helpful.

How has your recovery been.  I find mine is slow due to an infection.  Plus I can sleep up to 10 hours a day. Not sure what that's about?  

I really hope your test results are going to be fine.  The last thing you need is more surgery.  Did you know Farrah Fawcett had a similar cancer.  I read her autobiography years ago.  I now understand how brave she was.  She openly discussed her cancer and went for many experimental treatments to try and find a cure. 

Please stay in touch and let me know about your test results. My fingers and toes are crossed for you.  I do understand how personal this is. I have never been more closed about anything in my life.  I am vague when discussing it with my closest friends.  Nobody knows what cancer I had.  they all think cervial.  I just let them think what they want. 

RE: vulva cancer

by SarahKate on Mon Oct 16, 2017 10:22 PM

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Thanks for your supportive posts.

Glitter.  I noticed a white patch on my vulva.  It wasn't particularly itchy.  I thought it was a fungal skin infection.  So I used an anti-fungal cream on it.  When it didn't go away I went to the doctor who arranged for a biopsy.  The result being squamous cell carcinoma.  If your cancer is linked to the HPV virus I would push the doctor to look into your throat issue.  The HPV virus is linked to throat cancer too.  He may be the expert in cancer but you are the expert in "you".  I can't believe that people said your symptoms were psychosomatic.  I think what Cate said about seeing people as they really are is very true.  Every time I tell my friend what is going on with me she tries to compete with a health story of her own as though it is a competition.  My specialist is involved in research into womens cancers so I will ask him about those two things you mentioned.  Thank you for suggesting them.

Cate.  I can relate to your comment about seeing people as who they really are.  Recovery hasn't been straightforward for me either.  I have had two infections, at week one and at week eight so I had to have antibiotics.  In the begining I felt very weak.  It was hard to remain seated as the weight was bearing down on the site of the surgery.  I was on a lot of painkillers for the first two weeks.  I began to feeel better by week four and had a friend pick me up for coffee.  At week six I started walking my dog and driving the car.  At week eight the wound opened slightly and I got another infection.  The doctor said that this was not uncommon because of the site of the surgery which is to the rear of the vulva.  I have been taking afternoon naps.  I don't know if this is part of the recovery, part of the cancer or being under stress.  I just go along with it as I am not working at the moment.  I think you said that you had a groin node dissection?  How was revovery from that?  I will try and look for that biography of Farrah.

I phoned the cancer council yesterday.  They have given me phone numbers for a support group for female cancers and a specialist nurse who deals with surgery for female cancers and can answer any questions I have.  I am in Australia, I don't know if they have anything like that where you are.

She asked me how old I was.  When I told her that I was 52 she was surprised at how young I was.  So, double unlucky for me.  There are only 300 cases diagnosed per year in Australia and most of those in the over 70s.

My next lot of surgery is tomorrow.  I should have a clearer idea of how things are going to progress after that.

Positive healing thoughts to both of you.

RE: vulva cancer

by GlitterGalore on Mon Oct 16, 2017 10:28 PM

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Sarah Kate... what part of the country are you in?! I've seen a lot of clinical trials lately. As for the Gardasil 9... can't hurt?!?)

RE: vulva cancer

by GlitterGalore on Mon Oct 16, 2017 10:33 PM

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As for the low dose naltrexone ... you will probably need to advocate for or search out yourself. Your local "compounding pharmacy" will be able to tell you who presciribes low Dose Naltrexone in your area... https://www.google.com/search?client=safari&hl=en-us&q=low+dose+naltrexone+vulvar+cervical+cancer&spell=1&sa=X&ved=0ahUKEwix4_aDmfbWAhViyVQKHW2IBi0QBQgYKAA&biw=375&bih=559
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