Sorry for the length, but I didn't want to be incomplete on the chance Iíll find someone who knows about this. After researching this, Iíve found very little information on Differentiated VIN. Iím hoping to finally find someone who has some information. I certainly donít expect answers to all my questions and appreciate any information/experiences you can share. Thanks for your help!
My daughter is a sexually active 20 year old college student (she's leaving the initial research on this up to me- probably better with all the possibilities you see on the internet). For at least the past 5 years she has had almost chronic issues with vulvar itching. She has been on many creams for Yeast Infections as well as about 10 cases of Bacterial Vaginosis (maybe more since she has to travel home from college to get to our GYN which doesn't always happen). Last year our OBGYN finally sent her to a GYN Specialist, at the time she finally got in for her appointment he told her she didn't have BV right then and come back when she did. She had an episode of bloody diarrhea this past winter and after a clear upper GI scan, and colonoscopy in January they found a clear polyp and an adenomas nodule (precancerous) which were removed. She also has been having urinary issues (urge to go) so our GP sent her to a Urologist and she's currently taking Detrol.
After continued itching issues I insisted on another appointment with the GYN Specialist this January and we saw his associate. He diagnosed her with Vulvar Vestibulitis and gave her Lidocaine to numb the area, incidentally he suggested she start Gardisil shots, which she's now completed. A few weeks ago she was back to our GYN and she pointed out a few (3-4) "bumps under the skin- haired area, both sides". They biopsied one bump and didnít mention any skin changes in the area (none mentioned on the GYN report). The biopsy came back with VIN 2, and I've scheduled her to see another Specialist at the same Hospital in mid-August (I'm told this one has some experience with Oncology and knows about VIN). The GYN told me they would probably laser the bumps off. BTW she had a negative PAP last summer and tells me she's had recent HIV/STD screening, all negative, and sheís always been a non-smoker.
I'm a Mom who WANTS to know as much as possible before we go in. I've got a copy of the Pathology report now and after doing days of research online I still have questions.
FINAL PATHOLOGY: Focal Vulvar Intraepithelial Neoplasia (VIN 2), Differentiated Type. Epidermal Cyst. Ki-67: Positive Staining into Parakeratotic Layer. P-16: Positive Patch Cytoplasmic and Nuclear Staining.
The detail says the epidermal cyst-benign, underlying the dysplastic epithelium is negative for p16. It mentions a rare mitotic figure in the middle third of the epidermis, as well as the P-16 and few koilocytic cells support a high-risk HPV infection. Findings consistent with a localized high grade squamous intraepithelial lesion or VIN 2.
My/others interpretation of the Pathology is that she has the Differentiated type of VIN not usual/classic warty HPV, but the smooth non-HPV related kind (although Pathology shows she has HPV). The ďbumpsĒ are benign cysts and the VIN was only found in the skin above the the cyst so it sounds like the cysts are unrelated. So it sounds like they found the VIN by accident while doing the biopsy for the cyst.
1. Is it likely that the precancerous nodule found in her colon and this are related (2 precancerous areas in 6 months)...and should we be seeing an Oncologist to put this all together (I called our GP and they said no, they're probably unrelated)?
2. From the report, she has the Differentiated type which everyone says is not caused by HPV (warty type is), although she obviously has HPV from the Pathology report. Is there a reason to test for which type of HPV she has? Are these (her HPV and VIN) really unrelated?
3. Are there other tests she should have to look for cancer/cysts in other areas- PAP (not due for one until fall), mammogram (she now tells me she's had a few small bumps between her breast/armpit for about 5 years. I/Mom have many breast cysts-they say benign.), other scans?
4. After hearing about the cysts, I was expecting it to be the HPV genital warts, but I immediately asked our GYN if the Pathology showed genital warts, but she confirmed she spoke to the Pathologist and it was a epidermal cysts and not the warts. The Pathology report says the cyst is benign. Does this mean the cysts are really unrelated and the VIN is just in the surface skin above it? If so, it sounds like she was lucky they found this at all (just an accident?)?!
5. I don't know what the treatment will be, but it doesn't sound like laser is the way to go. I'm reading since she has the bumps in haired areas that excision or LEEP may be better? Isn't it always better to be able to get the pathology, which is destroyed with laser/freezing?
6. It sounds like there's a large correlation with finding this differentiated VIN adjacent to areas with Vulvar Cancer. Is just removing the other cysts going to be enough? If she really doesn't have any skin changes and just the cysts below, how can they find it all?
7. Since they also call this Differentiated type "Simplex". Does this mean it has anything to do with Herpes Simplex? The only thing I've read is a correlation with the Usual VIN and having Herpes Simplex in some, but no mention with Differentiated. This doesn't sound like it's related.
8. The VIN Differentiated sounds like it's VERY unusual (reading 2-10% of all VIN) and EXTREMELY unusual in someone her age (sounds like the mean age is in the 60's for this type, 50's for usual VIN-but found sometimes in women in their 20's). In fact I haven't found mention yet of anyone her age diagnosed with it. Hopefully they won't find any Cancer at this point, but given her age and the precancer in her colon, we're really concerned about her long-term care, screening and prognosis. Is there any great source for us?
9. What else should we be doing/know?
Hi HerMom! I'm sorry you and your daughter are having to deal with this. I'm glad you've found us so we might be able to help you a little. I'm not going to answer your questions in order, but I'll answer what I can.
I don't know a lot about VIN or VAIN, but I was diagnosed with cervical cancer in April so I've read a bit about HPV and a little about VIN.
There are over 100 types of HPV. Twenty (or so) affect the sexual oragans (plus anus and/or mouth). Those are divided into high and low risk. Low risk can lead to warts. High risk can lead to cancer if untreated or undetected.
It sounds like your daughter is positive for high risk HPV, not low risk.
What kind of gyn specialist did you see? I recommend that you take her to a gyn/onc since she is at VIN 2. It wouldn't hurt. They see and treat VIN, CIN, VAIN (and the cancers they can lead to) every day. They know what they are looking for and what to do to be proactive in treatment.
I don't know if the colon polyp(s) is related or not. My cancer was of the glandular cells (not squamous) and it can spread to the liver, lungs, lymph and colon. I had a colonoscopy 5 days before my hyst. The polyps that were removed were benign and not related to my cancer.
I thought LEEP was only done on the cervix, so I don't know anything about it being used in the vagina. Though I guess it could.
Before I was diagnosed with cancer I was sent for a colposcopy and an ECC. The ECC found my adenocarcinoma in situ. From there I was sent for a cold knife cone bipsy. It diagnosed my adenocarcinoma Ia1. My doctor could have done a LEEP instead of the cone, but she wanted clear margins on the tissue that was biopsied. LEEP singes the edges and it is difficult to see the tissue margins. The cold knife cone had clear cut (literally) edges. She then ran the LEEP over the cut edges (on the remaining cervix, not on the tissue she removed) to seal them off to reduce bleeding.
All of that to say that a knife gives cleaner edges than laser burning or any type of freezing. The entire tissue sample can then be checked.
I don't think the VIN and Herpes are related. It is possible she has both, but they are not related otherwise.
Right now, I suggest you get an appointment for her with a gyn/oncologist. And (I think you already have this) write your questions down so that you have space to write answers. When you go to the appointment, have 2 copies, one for the doctor to see and one for you.
The best sites, without horror stories, is something like Center for Disease Control and Cancer.gov.
I wish your daughter the best. And if she hasn't done so, I'd like to thank you for helping your daughter with this. I know it can't be easy for you. You are both in my prayers.
If you have more questions, ask. We'll do our best to answer them.
Wow P.E., that was really helpful, thanks! I, in my 4 days of online education- LOL, I somehow got the idea that High-risk HPV meant she'd probably have the warts, which she doesn't. Now I just have to reconcile that they say the "Differentiated/Simplex" VIN is not caused by HPV and so they shouldn't find HPV in the vulvar lesion (which it appears they did)...hmmm. BTW- she doesn't have herpes, I was just confused about the use of the word "simplex" as it is used in describing many things.
The dysplastic cells were found in the vulvar skin layer (above the cyst) so that's the epithelium (which I'm now reading can be glandular or external). I was VERY interested in the link you mentioned between other glandular epithelium cancers (adenocarcinoma). Do you know if there is a link between all epithelium cancers, both glandular and external (which would link her epithelium pre-cancers in the colon and vulvar)? If High-Risk HPV causes these cellular changes, can't that happen both places (is HPV well linked to colon cancer?).
She's scheduled to see a GYN Specialist who "has experience" with Onc. I didn't know there were GYN/Onc. when they scheduled us, but I've heard she's really good and has been on the faculty there for awhile. I have a connection to another GYN/Onc. now if we feel we need a second opinion. I think we'll insist on the cutting for Pathology reasons, from what you and other info. say that seems to be best, especially given her age and the chance of recurrence/no clear margins, so we'll see if this Specialist agrees. Sounds like our GYN just expects her to "laser the cysts"; but what information does that give you?
I'm not an expert at all. I'm just going by what I read as I was trying to figure out my intial diagnosis: atypical glandular epithelial lesions and adenocarcinoma in situ. Epithelial, if I recall correctly is just skin level; the lesion isn't below a certain layer (and I can't remember its name) of the upper skin. Glandular is also called columnar. Those cells are conical in shape and secrete mucous. On the cervix, the outer third is squamous cells (and are flat), the upper third is columnar. I can't remember if the uterus is columnar, or something different. I think there are at least *some* columnar cells in the uterus. I *think* any place that secretes mucous is glandular, but I don't know that glandular cancer (adenocarcinoma) in one of those places means it will metastasize in another.
You might search for metastasize and the type of atypical cells she has. That'll give you information on where it can spread.
To ease your concers, I got the idea that the cancer would have to be large and/or deep before it metastasizes.
I'm not familiar with external cells.
Back to the LEEP vs cone. They can still biopsy the tissue removed from a LEEP (or freezing), but the edges are singed, thereby not as clear.
Great info. The only definative cell description I see on the Pathology is the word "squamous" ("Findings are consistent with a localized high grade squamous intrapithelial lesion or VIN 2"). So that's top layer of the skin, right? There's also this: "Ki-67: positive staining into Parakeratotic Layer; p16: Positive Patchy cytoplasmic and nuclear staining", but from what I can decifer those are the indicators for VIN/HPV and tells how deep it goes. I'll try some more research on squamous.
I saw some research yesterday that HPV and colon cancers are linked (one study showed more than 1/2 with colon cancer had HPV). Hmm....
Her appointment is Aug. 14. I'm going to call today to see what that appointment will include as I didn't know enough when I made it to ask if it's just a consult or if they'll be at least doing a colposcopy (I'm hoping they aren't expecting to "just laser them off then" as the GYN said. I'd think that would be a seperate appointment for any procedures).
BTW- I'm going to post some separate questions about HPV and the vaccine after you have it, and how people get informed (my daughter has yet to be told she has it...maybe because they didn't do the DNA testing).
Hi there, I can't answer all of your questions, because I can't make sense of her diagnosis in light of her pathology. By definition, and especially at her age, VIN is caused by HPV, but it should be the undifferentiated or poorly-differentiated VIN. Differentiated typically means non-HPV VIN, but as you know it would be soooo unusual, even unheard of, for a 20 year old girl to have the type of VIN that is typically found in postmenopausal women. The difference between differentiated and non means the former grows more slowly and is less apt to spread. Non-differentiated cells tend to grow rapidly, out of control, spreading fast.
HSV-2 (herpes simplex type 2, another STD), alongside hrHPV, really ramps up your risk of other gyn cancers. Since I have both, (but hoping to clear the damned HPV...) I have done a lot of research on this. I don't know if her VIN means HSV-2 is also present. A simple blood test, HerpeSelect, will tell you, as well as differentiate between HSV-1 and HSV-2 ("oral" v. "genital", although either type can appear in either place. Probably more than you wanted to know. Sadly, definitely more than I ever bargained for). HOWEVER, for any cancer or precancer to develop, hrHPV must be present...HSV-2 alone does not cause cancer. It used to be highly suspect, but I think that has been fairly conclusively proven since medical knowledge of HPV has increased (but obviously, not enough!).
I suggest sending her slides to another path. Her situation is obviously complicated and I'd push to have a tertiary center (teaching institution hospital) evaluate her.
Finally, you keep saying they found this by accident. Is it correct to say that she had suspicious lesions biopsied by sight, but the dysplasia was found at the margins? The vinegar wash is SUPPOSED to show any abnormal areas of tissue. I have even heard of girls who had white spots show up on the wash and it was negative for true dysplasia, but positive for HPV. Did she have this wash-directed biopsy, and if so, how long did the doctor wait for it to stain the issue? Typically it takes 3-5 minutes to soak through vulvar tissue.
Last edited by Mod-S4; 11-26-2008 at 12:01 AM.
Reason: Quote removed.
Thanks so much brieaukirsch! Good to know that I'm confused for a reason... We'll definitely get the blood test done for HSV-2. I guess I'm wondering if they "found this by accident" because she had no skin changes, color changes, or lesions. She just pointed out 3-4 small cysts that she had found under the skin (just by feeling them, nothing looked different). No wash was done...they just went ahead and biopsied one of the cysts (I guess given her history of GYN issues). The cyst was completely benign, but they found the dysplasia/VIN in the skin overlying the cyst (no clear margins). She goes in next week (Tues. for her annual GYN appt. and Wed. to the Specialist for the colposcopy). If you have anything else we should ask, let me know. Thanks again!