Cervical CIS to vaginal dysplasia

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Cervical CIS to vaginal dysplasia

by Stacey32 on Mon Jan 22, 2007 12:00 AM

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 I am 32-years old and live in Las Vegas, Nevada, USA. I don't smoke and I excercise. I did my first sprint-distance triathlon at age 30 and love to train for the sport. One year ago (Nov. 2005) I had my first abnormal pap. The indications were moderate to severe dysplasia. My Doctor immediately brought me in for a culposcopy and the results were that it was a "false positive." I'm sure you know this is very odd for a pap to find abnormal cells and for the follow-up culposcopy to find nothing. I wasn't even positive for HPV.
I went in for my follow-up pap in April 2006, thinking very much that I was just going through a routine - this time the pap was LSIL with some severe dysplasia. My doctor performed another culposcopy that confirmed the pap and that I was positive for HPV. I had a LEEP procedure within 2 weeks that found CIS - but the margins were "clean." My doctor was confident the situation was handled - after all 90% of patients are treated with this procedure.
I went in for my first post-LEEP pap in August 2006. Results came back LSIL with mild dysplasia. My doctor was extremely alarmed that I had an abnormal pap so soon after my May LEEP. I was very disappointed and alarmed as well. My trust in the "normal" procedures was lacking. The normal protocol would be to perform a culposcopy and if it was just LSIL with mild dysplasia, then they would wait 3 months and test me again. Since the culposcopy I had in Dec 2005 had given me a false negative, I was not willing to take that chance again. My anxiety had reached a whole new level even though I was going to counseling. I requested and my doctor agreed to perform a total hysterectomy (complete removal of uterus and cervix) in October 2006.
My hospital stay was only 36 hrs and since it was performed vaginally, my recovery was very smooth. I kept my ovaries, so there was no hormone adjustments.  I did not have any infections and no post-surgery complications. The results of my pathology confirmed the pap: LSIL with mild dysplasia - clean margins. I had a surgery that is usually reserved for stage 1 cancer when I only had mild dysplasia. I felt confident that this was behind me.
My extremely cautious doctor requested I have one more pap in Jan 2007 before returning me to yearly exams. I was pretty upset with her - the waiting 2 weeks for another pap test so soon was very difficult for me - my anxiety about my health really takes over my ability to enjoy life while waiting for the test results. However, it's a good thing it was up to my doctor to have another test ... I may have blown it off just to avoid the anxiety alone.
I found out last week (Jan 18th, 2007) that the pap on the vaginal vault was LSIL-H (low grade squameous intraepithelial lesions - can not rule out high grade) - same as the result on my cervix last May. My doctor (gynecologist) has now referred me to a gynealogical oncologist. Not because I have cancer, but because she feels the oncologist might be able to do more for me so I don't develop cancer.
I am extremely frustrated because it seems that I'm way outside the statistics. It is very difficult to feel confident when you can't really believe the test results all the time. I'm scared and don't know how to let my new doctor do his job and feel confident about my future.
I feel very lucky to have had this pap test so soon after my hysterectomy and that I have several options for treatment of my vaginal dysplasia - but realizing that cancer could be in my future is frightening and I'm terrified. I have a great group of friends and family, but no one really knows how to relate to this sort of thing if they haven't gone through it.
I would appreciate any support or information any of you have that might help.
-Stacey

RE: Cervical CIS to vaginal dysplasia

by Scaredaboutcancer on Mon Jan 22, 2007 12:00 AM

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Hi Staey,

I am sorry about all you are going through.  I was diagnosed with mild dysplasia last August, and I was very scared.  I am 28, I have never had an abnormal pap in my life.  I have one son, he is 4, so this really made me open my eyes and start making some changes.  I immediately started doing some research about cervical dysplasia and cervical cancer.  I stopped smoking, which I was not a heavy smoker, just mostly social and stress smoker, but had been since I was 15.  I started taking vitimins, I never have been a vitamin taker either.  I take 1600 mcg of folic acid, 400 I.U of vitamin E, and 2000 mg vitamin C per day.  I also took Beta-Mannan supplement for two months.  I also take a juice called Xango, which has Xanthrones that help kill cancer cells and build healthy cells.  I cut down on red meat, I only eat it about twice per month, and I have been eating lots of green veggies.  I went to get a follow-up pap three weeks ago and it came back clean!  They also tested me for HPV and that came back negitive.  Did they say why the HPV did not show up at first?  I am sorry you are going through this and I hope that this information will help you.  I am praying for you.

Take Care and keep in contact,

Gina

RE: Cervical CIS to vaginal dysplasia

by Stacey32 on Tue Jan 23, 2007 12:00 AM

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Hi Gina,

 

Thanks for your response. The reason why the HPV was not found in Dec 2005 is that (I was told by a gynologic oncologist) HPV infections come and go and you only test positive when you have an infection – even though you always have the virus.

 

I am starting to realize that removing more body parts (i.e., my vagina) is not really the answer. What I need to do is neutralize this infection. I went to a vitamin store earlier this week and have started the following vitamin regime:

 

Vitamin A (beta-carotene only) = 50,000 IU

Folic Acid = 800 mg

Vitamin E = 100 IU

Vitamin C = 700 mg

Multi-oil Essential Fatty Acids (EFA) = 600mg

 

I would be interested in hearing where you can get XanGo (or must it be ordered online)? My appointment with the gyneological oncologist is the first week of February. I’m hoping by the time I have a culposcopy performed that the vitamins will have started helping. I’ll definitely keep updating the site with my progress.

 

Thanks again for your response!

-Stacey

RE: Cervical CIS to vaginal dysplasia

by Scaredaboutcancer on Tue Jan 23, 2007 12:00 AM

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Stacey,

I don't think I am supposed to promote or sell on this site, but you can only get Xango from a Xango distributor.  I can give you more information if you are interested.  I know the vitamins will help you, they definately are not going to hurt you, and they will build up your immune system.  I am praying for you.

Take Care,

Gina

RE: Cervical CIS to vaginal dysplasia

by Stacey32 on Tue Feb 06, 2007 12:00 AM

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Good news! I saw my gynecological oncologist yesterday (Feb 5th, 2007). He spent over an hour with me answering my questions and discussing my case. He assured me that vaginal cancer is EXTREMELY rare. We looked at my most recent pap from Jan 4th, 2007 that stated, ”LSIL with mild dysplasia, cannot rule out high grade SIL.” I also tested HPV positive.

I asked if he would do a culposcopy to confirm the result. He said that treatment for vaginal dysplasia is different than cervical dysplasia because it is much much less likely that vaginal cancer will develop compared to cervical cancer. Therefore, he would not perform a culposcopy unless I had a pap that indicated HSIL. His recommendation was to wait 4-6 months and see if it regresses. As a precaution, I elected to use 5-FU topical cream for 6 weeks to help my chances of regression. I will begin the treatment this week.

I am still taking vitamin supplements (as described in my last message), but I have also changed my eating habits and include a serving of vegetables or fruit (broccoli, asparagus, spinach, tomatoes, red grapes, etc.) with lunch and dinner. I am drinking orange juice in the morning and pretty much eliminating alcohol intake at night (glass of red wine or a microbrew is permissible once in a while – but no more miller lite or other cheap beer).

I am calm and optimistic that my condition will not progress and am hopeful for a normal pap result when I go back in July. I will be sure to update my condition then. For now, I will celebrate not having to see a gynecologist for the next 5 months and enjoy the beautiful spring weather here in Vegas. Best of luck to you all!

 

-Stacey

RE: Cervical CIS to vaginal dysplasia

by Scaredaboutcancer on Tue Feb 06, 2007 12:00 AM

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Stacey,

I am so happy that you are doing better!  I have never heard of Vaginal dysplasia, I will have to do some reading about it.  Keep up the healthy habits, and I still pray for you!

Gina

RE: Cervical CIS to vaginal dysplasia

by Fla_Girl on Wed Feb 21, 2007 12:00 AM

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Stacey,

   I just found this website and read your message and can not believe that you have been through EXACTLY the same thing that I have experienced. I've had LEEPS, a conization, then a hysterectomy (my ovaries are still intact) and I am still having abnormal paps due to the HPV virus on my vaginal vault. I was also sent to an oncologist because my gyno said there was not much else he could do for me. That made me feel hopeless at the time. The oncologist did a culposcopy and again it came back high grade dysplasia.  I have been going through this since 1992 and am so tired of the whole business. Like you mentioned I was told that vaginal cancer is very rare, however, it doesn't mean it will never turn into CANCER. There is always that chance, especially when your immune system may get weak. Anyway, I felt very uncomfortable going to an oncologist since I did not have cancer. And he wanted to put me on Aldara and after reading up on it, it scared me to death.  So I decided to go seek another opinion from a gyno, a woman, who I had heard alot of positive feedback on. I did see her on Feb 5, 2007. She did another pap smear and I just got back the results that it is again high grade. So she wants to prescribe Efudex and have me go through this treatment to see if it gets rid of the abnormal cells.  You said you have been taking this. Can you tell me what the side effects are and how you are feeling?  I don't do well on most medications.  I am thin, my weight is 103, and I am 5'5". I don't ever take an aspirin so my body is very sensitive. . I have never smoked, don't drink, take drugs, and other than this am in good health. I take alot of vitamins every day and try & eat sensibly. I really don't like the idea of taking a chemotherapy cream and burning away my vagina. I just would like to hear from you.  I don't know exactly what other options I have. Thank you for your time.

                                             Joy

RE: Cervical CIS to vaginal dysplasia

by Stacey32 on Thu Feb 22, 2007 12:00 AM

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Hi Joy,

 

There is no doubt in my mind (from talking to other people on this site) that there is no generally accepted management of VAIN by the medical community…. Mainly because it is so rare, there is not enough data on how best to treat it. However, I found this article online and it really helped me understand my own personal risks and helped me to ask the right questions when I saw my oncologist – I think it may help you understand your own condition.

 

http://www.obgmanagement.com/article_pages.asp?AID=3340&

 

Interesting point – I noticed the author is a doctor in Florida and your handle is “Fla Girl” – so maybe you could get hooked up with the clinic he works with.  I am no expert, but it seems to me that it is VERY important that the doctor you choose to work with actually has significant experience with VAIN (since a lot have never even seen it). If that doctor happens to be an oncologist – so what – as long as the doctor has experience with VAIN.

 

Also – please know that I am aware that VAIN can turn into cancer and will likely have paps every 4-6 months for the rest of my life to keep a close eye. While I am focusing on the positives of my condition, I have no intention of burying my head in the sand.

 

So, to answer your question. The Efudex is not a big deal for me. It is easy to apply and painless – although I will emphasize the importance of making sure you get the petroleum jelly all over your vulva/labia and using a cotton ball/tampon so that the cream does not leak out and irritate these sensitive areas. The link that I gave you explains how the treatment usually works. I have also read online and there is a lot of controversy about using 5 FU intravaginally (it is not FDA approved for this use) and there is the potential side affect of creating a vaginal ulcer (10% risk – I’ve read). However, the case studies I’ve read online have convinced me that it will help and after discussing the risks/benefits with my doctor, I have chosen to use it.

 

I think when you read the above article link, you will discover that some treatment should be done (considering you have HSIL VAIN) – but that you have many options. Since you have been dealing with this for over 10 years – I’m sure you know a lot about your condition and what your body can handle. I would consider all your treatment options and discuss the risks/benefits of each one with your doctor.

 

I hope I haven’t provided too much unsolicited advice – I am certainly not a doctor, but wanted to share what I have learned in the past 2 months. Please keep in touch and let me know how things progress!

 

-Stacey

RE: Cervical CIS to vaginal dysplasia

by Fla_Girl on Thu Feb 22, 2007 12:00 AM

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Hi Stacey,

    Thank you so much for all the info. It is so nice to know that there is someone who can understand what I am going through and be of so much help. I have alot of friends, however, there is not one of them who can even begin to relate to the problem I have been having for so many years. I am very blessed that I have found you. And I hope we can continue to stay in touch and give each other all the support we can possibly give. I know we will get through this. I have to focus on staying positive, eating right, getting enough rest and just not letting this stress me out.

   I have an appointment on Feb 28, to see my gyno. Since the results of my last pap was HGSIL, she is going to prescribe Efudex. I am mentally preparing myself to begin the treatment.  I have been doing research on it and from what I have read, it seems safe. The info about ulcerations, even 10% getting those, does not thrill me, but there are always side effects to every drug.  I have no idea how long my doctor will keep me on this. I have alot of family coming to FL to visit for 10 days in about a month, so I want to be up beat and hopefully done with the medication by then. I'll just have to wait & see.

.    I live in Daytona Beach and may contact Dr Hoffman, who is the author of that article, from Tampa, FL.  That is about 3 hrs away and it would be worth it if he would be willing to see me. I probably am jumping the gun. I should wait & see how I do with the medication first. 

    I will pray for you Stacey. Please keep in touch and let me know how you are doing. God Bless you, stay well.

  Joy 

 

 

 

 

RE: Cervical CIS to vaginal dysplasia

by Tinat1963 on Tue Mar 18, 2008 12:00 AM

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This message strand was such a "comfort" to me, to know that others are undergoing EXACTLY what I am.

I had an elected hysterectomy 3 years ago for mild/moderate dysplasia. I just had my vaginal pap come back with the same mild/moderate dysplasia which has gotten me a referral to a gynecological oncologist. It has seriously scared me silly.

I have my first appointment with the oncologist on April 1.  I am nervous.

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