Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Stacey32 on Mon Jan 22, 2007 12:00 AM
by Donnamar on Thu Mar 01, 2007 12:00 AM
I read your story and said wow I have the almost the same medical
history and I found out about the vaginal dysplasia on February 23th.
I hap a Leep and the Hysterectomy six months ago to find I now
have LGSIL in some part of the vagina that I do not know yet.
A nurse told me my gynecologist wants to see me in 3 months for a
repeat pap smear. I feel I would like to see gyn oncologist on my own
since this is the thrid appearance of early stage precancer. Do
you have the virus HPV? I was told that I do. Take care.
by Michele7 on Fri Mar 16, 2007 12:00 AM
On 1/22/2007 Stacey32 wrote: 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
My name is Michele and I'm 44 years old. I had a hysterectomy when I was 35 for a prolapsed uterus and a few other minor problems. Not cancer. My pap smears were always normal.
Thank God my Dr. thought it wouldn't hurt to do a yearly pap. I understand a lot don't.Last year in Jan. I went for my yearly check-up. My results caame back bad ,so they needed to do coposcopy with a biopsy.
Those results showed moderate vainII dysplaysia.My Dr referred me to a Gyn oncologist. I had laser surgery that April. He had me come in 3 months later for a pap test.It was normal. I thought I was finally ok.
My next test was in Nov. It came back with mild dysplaysia this time. My Dr. decided to repeat the pap in 3 more months.
This time we both decided to get another biopsy and also run a HPV test.All along he told me I probably have HPV. I couldn't believe it. I have been married for 23 years and had a hysterectomy how could I have HPV
and it was never picked up before.
M pap was normal and also my biopsy,I tested positive for HPV.
I can't believe this could happen. I had a hsterectomy years ago,why wasn't this evber picked up on any of the biopsy's after my surgery.
I have several types of the HPV. Including the two most likely to cause cancer.16 and 18.
I will have another test in six months.
I need to learn more about HPV 16 and 18.If anyone can help me in any way I would appreciate it very much.
by Blonde628 on Sat Apr 07, 2007 12:00 AM
My name is Lise, from Missouri....I've been reading the dialogue between you and Joy. I am just beginning the same path you've walked. I had a complete hysterectomy three years ago, and have had abnormal pap smears since. I am positive for HPV and am awaiting the results of the typing. I currently see a Naturopath and take lots of supplements based on his recommendation. I am waiting for an appointment with an Oncologist for recommended treatment. It's very scary. I'm a single Mom with three children, 17, 14 and 11. Have just recently become engaged, and want to be around for a long time. Everything I've read about the 5FU cream scares me to death. My Naturopath isn't thrilled with it either, but I most definitely don't want the disease to move into cancer. Any info and words of encouragement will be so appreciated!!! It's awesome to find a site where women can support one another.
I pray that you are doing well!!
by Ginat11 on Sat Apr 14, 2007 12:00 AM
I just wanted to say that I am glad I found this site, and my history is almost identical to both of yours. Bad PAPs, several LEEP's, hysterectomy (6/03), now still high grade dysplasia.
I completed Efudex treatments (8 / weekly) in December, and at my recent 3 month PAP, I still have VAIN III, which means that the Efudex did not do the trick for me. I am going in on 4/26 for a pelvic exam under anesthesia so that my gyn/onc can get a good look at what's going on. If he sees any lesions to laser, he will do so at that time. If he sees no lesions (which is what he expects because the Efudex should have taken care of anything exposed to it), then I will probably have to have another surgery to excise my vaginal cuff (where my hysterectomy was closed). My gyn/onc says that if he doesn't see anything to laser, the abnormal cells are probably in the folds of the vaginal cuff where he can't see them and the Efudex couldn't reach them.
I am so tired of fighting this, but will do anything necessary to try to rid my body of these cell! Good luck in your fight - and know that I am sending my best thoughts to you.
by Stacey32 on Wed May 09, 2007 12:00 AM
Wow – I haven’t checked the site in a while, but now my next pap is coming up June 7th and I’m thinking about all this stuff again. Last message I wrote (look under the gynecological cancer message board) in February said that I was going to under Efudex to treat my ”LSIL with mild dysplasia, cannot rule out high grade SIL” result from a pap January 4th. Yes, I was also HPV positive.
The first 2 weeks of Efudex went fine. The third week was horribly painful (and I’m not a wimp). I was supposed to take it 2x/week for 6 weeks. I only made it 3 wks because the discharge affected my vulva area (even though I used tons of petroleum jelly to protect it) and peeing became a very painful activity – it was even difficult to sleep it hurt so bad. My hysterectomy was less painful. So, around the beginning of March, I went back to my gynecological oncologist and we decided that since my Efudex treatment was optional anyway, to discontinue. It took 3 weeks after I stopped using it for it to stop hurting. We scheduled a follow up pap for early June and not much has been happening since then.
I have been taking my supplements, eating lots of fruits/veggies, exercising, sleeping well (thanks to melatonin), laying off the alcohol, reducing stress at work, etc. The weather has been so great this spring that I really have been back to my old self (since before this abnormal pap nightmare began in November 2005) and have taken up golfing even.
Couple things I’d like to share: First, I found this great article on VAIN which I really think will help you all with a lot of your questions:
Second, for all of you who have shame/embarrassment about being HPV positive – stop it right now! HPV is the OLDEST STD in the world. 80% + of the population carries some form of it. It is extremely contagious (condoms won’t prevent it). The reason we ladies are dealing with it is because our immune systems aren’t suppressing it right away. So stop thinking “if only I hadn’t slept with so and so.” You very well could have gotten it from your faithful partner of 25 years. It’s just our immune systems have gotten confused and not recognized the problem cells. Focus on treating these cells and not on beating yourself up over something you really can’t control. Certainly more sex partners increase your risk because you are exposing your immune system to more infections, but it’s the immune system reaction that really is the key to whether the cells start to misbehave.
Finally, one thing we all have in common is that we have vaginal dysplasia, but remember that is NOT cancer – and from what I have learned, vaginal cancer is much rarer than cervical cancer. To be honest, I fully expect to have another abnormal pap in June – and I expect to have more surgeries in my future. Whether or not any of these surgeries are necessary (since not all VAIN 3 goes to cancer) I won’t really know. I wonder how many women have VAIN that never know they do because they have not had a hysterectomy and only have their cervix tested when they go in for their paps? Since I don’t know, regardless of my test results, I will be getting paps every 6 months for the foreseeable future just to make sure.
Best of luck to you all!
by Milliegt on Tue May 22, 2007 12:00 AM
Hi, I read your story, it is really shocking. I had my first pap test January 2006, the results were completely normal. I came back to the clinic April of this year 2007 to have a second pap test as regular routine and surprisingly , it indicated "severe dysplasia." The Dr. did the colposcopy and the biopsy to confirm the results. The results say that I have Cervix Carcinoma in Situ, which is stage Zero of cancer. The Dr. recommended a cone biopsy since the damage seems to be quite extensive, however he called me today saying that he took a look at my results again and now he believes that a LEEP procedure may be enough. I am very confused, uncertain and of course scared. I am going to see a different DR. tomorrow, he has my medical records, so he knows what's going on. I am only 25 years old, and I want to be a mother in the future, I know that having my uterus removed may be a good prevention, but it is really a very very very hard decision. I have a boyfriend, I've been with him for almost 4 years now, and this is devastating. Now, I thought that having the uterus removed should be it, but what you are saying is frightening, now I am even more confused. I don't know if I have the virus, I believe that I probably do, but I don't know for sure. My results indicated severe damage and they don't usually do the HPV typing when you have such results. The other problem is that I found two lumps in the back of my neck the Dr. took a look at my throat and he scraped it to do some test. He said it was normal, but I don't really fully trust tests anymore. Hpv may be a risk factor of throat cancer, actually more specifically oropharyngeal cancer, also it can be associated with anal cancer, vulvar cancer, vaginal and even although very rare ovarian cancer.
The response that I would like to give you is that, you should probably seek for more Dr. opinions before having any procedure done, or before taking any other decision . I hope it resolves I wish you good luck. I understand all the anxiety you should be experiencing. I know because I am in a sort of similar situation. I do not want to have cancer, I am so scared of quimiotherapy and radiation. I can't sleep, I can't eat, I can't stop thinking about it. But, I need to calm myself down since the DR. said that being depressed and anxious debilitates you immune system, so you may be giving the cancer a greater chance. Also, he recommended some multivitamin supplements, especially vitamin C and E. Purified water is also recommended. Dieting while being in this condition may be fatal, you need good defenses in order to fight any abnormal changes found. God bless you, I have a lot of faith in God and I know he is helping go through this, every time I pray and meditate, I feel better, I am not as worry afterwards. Again, good luck, please feel free to answer if you want to tell me something.
I also want to say that if there is anyone going through a similar situation please respond to this message. I will appreciate any advice, or if you have any questions feel free to ask.
by Stacey32 on Tue Jun 26, 2007 12:00 AM
Hi Everyone! Well, I am very happy to say that the results of my 6/4/2007 pap were NORMAL!! I will still have to be tested every 4 months until the Dr./I both feel that I can resume annual testing, but it feels great to have the first normal pap in 2.5 years! I want to share the choices I made over the past 5 months (since my last abnormal pap on 1/4/07):
1. I used the following vitamin supplement routine (required taking vitamins 3x day)
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
2. I ate fresh raw vegetables (+ dip) at lunch everyday and had steamed vegetables for dinner several nights/week. I had spinach/cranberry salad for a snack after work/before dinner so that if I went out to eat, I had already obtained some good veggies.
3. I took melatonin to help me fall asleep and get good rest without feeling groggy.
4. I drank perrier water instead of beer in the evenings. For those of you who like your beer, a soda water can really help substitute the habit.
5. I stopped putting my life on hold waiting for test results. I planned an extravagant summer vacation - even though I knew a bad pap in June could have cancelled them. I also went back to triathlon training and will do my first one in 2 years this fall.
6. I read "The Secret." Even if you don't believe in it, it really helped the control freak in me settle down and reduced my stress and gave me other things to focus on.
I wish you all the best and will let you know how my next test goes, too!
by texasbluebonnet on Sat Mar 22, 2008 12:00 AM
On 6/26/2007 Stacey32 wrote:Hi Everyone! Well, I am very happy to say that the results of my 6/4/2007 pap were NORMAL!! I will still have to be tested every 4 months until the Dr./I both feel that I can resume annual testing, but it feels great to have the first normal pap in 2.5 years! I want to share the choices I made over the past 5 months (since my last abnormal pap on 1/4/07):1. I used the following vitamin supplement routine (required taking vitamins 3x day) Vitamin A (beta-carotene only) = 50,000 IUFolic Acid = 800 mgVitamin E = 100 IUVitamin C = 700 mgMulti-oil Essential Fatty Acids (EFA) = 600mg 2. I ate fresh raw vegetables (+ dip) at lunch everyday and had steamed vegetables for dinner several nights/week. I had spinach/cranberry salad for a snack after work/before dinner so that if I went out to eat, I had already obtained some good veggies.3. I took melatonin to help me fall asleep and get good rest without feeling groggy.4. I drank perrier water instead of beer in the evenings. For those of you who like your beer, a soda water can really help substitute the habit.5. I stopped putting my life on hold waiting for test results. I planned an extravagant summer vacation - even though I knew a bad pap in June could have cancelled them. I also went back to triathlon training and will do my first one in 2 years this fall.6. I read "The Secret." Even if you don't believe in it, it really helped the control freak in me settle down and reduced my stress and gave me other things to focus on. I wish you all the best and will let you know how my next test goes, too!-Stacey
Hi, I am new with this site. I have a long history of cervial dysplsia treated with cones, leeps, etc. I am a DES daughter as well. I just found out that I have VAIN III vaginal dysplasia that I have to treat with Efudex cream starting this coming Monday. I am older but have two adopted children that are younger that I still need to car pool around for school, etc. I am so nervous about starting this 10 week therapy (1 time a week.) The nurse said it will most likely be week 6 that starts to get to me. I have read that Desitin might be helpful but would welcome any information that you all have or experience. Meanwhile trying to enjoy the spring Texas weather and get ready for the Easter Bunny visit tomorrow! Thanks for any help you can provide.
by Caribou on Wed Mar 26, 2008 12:00 AM
I guess this isn't as rare as they say.. I too will start my Efudex this coming Sunday...and until I found this website, I wasn't too sure anyone else would understand. These entries I've just read are almost word for word what I've experienced the past 4 years. I hope you all continue to post, and I wish you all the best... SM
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