Hello friends.
Just writing to share my progress. Things are happening quickly. I got my high risk anal hpv and abnormal cells diagnosis last Wednesday, and I'm seeing Dr. Goldstone here in NYC tomorrow for an exam. Hopefully he'll be doing the anoscopy at that time, but they don't schedule them in advance (leaving it up to him for initial exams). Thanks jamiegirl for sharing your experiences and recommending him!! It's a quick turnaround, but not so quick if you consider I had my displastic pap and cryosurgery in 1992...I may have been walking around with anal hpv for almost 20 years.
I'm very nervous about what I'll find out, but I'm glad I won't have to wait too long for answers. I'll share anything I learn from Dr. G about hpv here. It seems to me that we're all putting the pieces of a huge puzzle together here. The more we learn from one another, the more we can figure out how this nasty virus works!!
Crossing my fingers for good news....
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Anal exam and possible anoscopy with Dr. Goldstone tomorrow...nervous!
- By akamai70
- Posted August 18, 2009 at 10:21 am · 22 replies
- In Other HPV related cancers
- Shared with the public
Explore topics in this discussion:
Cancer Hemorrhoids Alli Cervical dysplasia Anal fissure Cryosurgery Cervical cancer Constipation HPV Gardasil Rectal cancer Folic acid
22 replies
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- Newest first
- By funkycervix
- Posted August 18, 2009 at 12:58 pm
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Did you ask your Dr to check you for anal HPV? Should everyone be checked for it? I didn;t even know there was such a thing until I joined this site. I've learned a LOT of things since joining. I hope everything goes well!
- By stalin
- Posted August 20, 2009 at 9:21 am
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hi i was wondering. i have cin3 with hpv. do i have to check to get a anal pap?
- By jamiegirl
- Posted August 20, 2009 at 10:50 am
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akamai - How did it go yesterday???
- By jamiegirl
- Posted August 20, 2009 at 10:50 am
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stalin - I like to be proactive so I would say, yes, get an anal pap!
- By akamai70
- Posted August 20, 2009 at 1:31 pm
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Hi there...
Yes, I had the exam yesterday with Dr. G. I barely slept a couple nights before...I couldn't eat a thing Tuesday night or Wednesday morning. I've been pretty freaked out about this. Dr. G. immediately put me (and my husband) at ease. He's great. Fabulous sense of humor. I highly recommend anyone who can get to him to do so. He makes the entire process so much easier. Again thanks jamiegirl for sharing the information. This site is such a great networking tool for all of us.
He only performed the standard exam and anoscopy because of insurance issues. If he'd done the HRA yesterday the insurance likely wouldn't have paid and I would have been stuck with the bill, so his standard approach is to have folks come back in for that. The results were pretty good. Nothing scary, no plaques, nothing that stood out to him. When he was finishing the digital exam I asked him if he felt anything and he said yes and my heart dropped with a thud to the floor... But he explained that he felt a hypertrophic papilla, which is sort of a callus that can result from straining and constipation. This makes sense. I never suffered from hemorrhoids until I had my first girl four years ago. I tore terribly and had a couple hemorrhoids after her birth. It took a long time to recover. I'm also currently testing positive for exceedingly high iron levels (232 when normal for a woman is up to 150) which can cause straining and constipation at times. Though my diet is good on the whole I sometimes have hard stools. The GP thinks it's because I've been taking prenatals since my second girl was born almost two years ago (I was breastfeeding up until two months ago and thought I should keep taking them)--too much iron circulating in the blood. Hopefully the iron levels will go down when I'm tested again next week. So as a side-note: be careful with prenatal vitamins if you're not pregnant!!
Anyway, I'm pretty pleased with the results of my exam. Dr. G. was hilarious, joking that I had the "most perfect asshole" he'd seen all day. I told my husband he probably tells all his patients that. ;) I feel pretty relaxed now, but my paranoid side is still edgy. I won't feel comfortable til I have the HRA on October 1. I want to know what's there and the high resolution will tell us that. A tiny part of me is scared that the papilla could be a tumor, though Dr. G. assured me that he's seen thousands of these and can tell them apart.
I'm so glad I had the exam. These tests are scary but not knowing is even scarier.
Some important points he made during our office conversation (sorry if this is exceedingly long but I want to share as much as possible):
I should start by saying that I was the second lady he saw yesterday morning...he joked that it was ladies day and I asked him about free drinks. ;) It seems that he's seeing more and more of "us." (His is largely a gay men's practice for those of you who don't know Dr. G's research yet.)
Do NOT worry about passing it to your kids through casual contact. Do not worry about cleaning toilet seats or even be too paranoid about sharing utensils. He said it's super rare to get it orally, and that if it were that easy to transmit he'd have kids coming in with warts coming out of their mouths like crazy. This was good to know but I'll probably still be extra careful with spoons and cups. ;)
He noticed that I shave my bum area and said that may be how I gave it to myself anally...you never know.
He wanted me to know it's really not likely I got the anal HPV from the guy I had anal sex with once back in 2002. Since I already had the HPV back in 1992 when I had cervical displasia, it probably dates back to then. He reiterated what most of us now know...many young girls/women get HPV within the first couple years of having sex. It spreads on our bodies from that initial exposure.
He wants me to look into getting the Gardasil shot. He looked at my husband and me and said that if we stay monogamous forever than there's no need to get the shot. We've already "shared" everything. But if there were ever to be indiscretions I could be exposed to other strains. I may only have one of the bad four right now, you never know. So he thinks it's worth getting the shot even though I'm 39. He has older women and men take it all the time.
He's not too concerned about which particular "bad" strain I have. We know I have the high risk kind and that's the most important piece of information to have. We just have to monitor my health at this point. We'll know how often to pap/scope after the HRA.
He definitely wants me to get a full vaginal and vulval colposcopy from my OB asap. He says a lot of women never have these tests (as I've seen discussed on this board) and that it's vital to monitor those areas as well. I made the appointment yesterday afternoon!
I asked him about passing the virus back to my vaginal area (since I currently have clean paps). He said it's likely that I already have antibodies in those areas. That was interesting, as I didn't realize that could happen. I would have asked him more about that but so much was going on. He didn't seem too concerned about it though. He was most adamant about having the vulva and vagina scoped, since we don't know what's currently there.
When I asked him about immunity building, he mentioned the green leafy veggies. He also mentioned indol 3 carbinol (I-3-C). He said to take 2-400 mg/day. I'm just learning about it but think I'll order some today. The studies look good! See links.
http://www.health-science-report.com/alotek/topics2/article452/
http://www.vrp.com/articles.aspx?ProdID=art1196&zTYPE=2
I'll keep everyone posted with any new information I find, and when I get the HRA done on October 1. Best wishes to all!!
Stalin~get the anal pap!! Anyone who's ever had a displastic cervix should get an anal pap and anal hpv test!! ;)
- By jamiegirl
- Posted August 20, 2009 at 5:06 pm
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akamai- I'm SO SO glad you liked him!! I really feel comfortable with him. He knows his stuff....I have to go back in 6 months. :)
- By Daphne75
- Posted August 20, 2009 at 8:36 pm
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Wow, what an interesting post -- and what a great doctor! I will definitely be asking about an anal pap when I go to the onc next week.
I found one of the I-3-C articles very interesting in that it mentioned that estrogen fuels the malignancy in cervical cancer. I have been to numerous gynecologic oncologists this year and most have said that this is not an estrogen-fueled cancer. I really think that there is a link, especially due to the higher incidence of CC in those that took oral contraceptives for a long period of time. Additionally, OCs deplete folic acid levels in the cervix as well!
- By akamai70
- Posted October 8, 2009 at 1:26 pm
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Greetings to all...I just wanted to update you all on my anal HPV. After seeing Dr. Goldstone over a month ago I went to see my OB for a full vaginal/vulval colposcopy, and thankfully everything looked normal. She even took a couple biopsies off the cervix and all looked okay--my cervix seems to be clear of HPV. Then I finally had my HRA with Dr. Goldstone in NYC last week. He did the full high resolution exam and took a couple little biopsies of areas he said looked to be "normal" inflammation, but could possibly be high grade displasia. The results came in today and everything was normal!! I guess the swelling was "mild atypia" which they believe is clinically unrelated to HPV. I have an anal fissure and history of constipation/hemorrhoid in the past few years--since I had my two babies. So I'm not surprised I have inflammation there. Now I just have to work on keeping hydrated, eating lots of fiber and l-carnitine, cruciferous veggies to try to keep the colon/anus healthy and hopefully CLEAR the HPV!!
I will go back in for another anal digital exam, anal pap, and low resolution anoscopy in six months. If I am again ascus I will definitely have another HRA.
Thank you all for your support and kind words through my process. I hope you are all well...I wish you the best on your own journeys toward healing and health.
Hugs to all!!!
xo
- By jamiegirl
- Posted October 8, 2009 at 7:05 pm
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akamai - so glad to hear the good news!!! I go back to him in February...
- By akamai70
- Posted October 8, 2009 at 7:54 pm
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Thanks Jamiegirl!! You are so supportive and kind. I will definitely be following your updates...our cases are so similar. PLEASE post/mail me WHEN you're able to clear your HPV...I know you will! BTW, how are you doing with that? Are you still taking the thuja? Is that applied to the anus topically?? Anything else you've been taking?
Dr. Goldstone was clear that I need to work to heal the fissure and take care of my diet; any type of irregularities "down there" are BAD for HPV.
I'll keep in touch. ;-)
- By jamiegirl
- Posted October 8, 2009 at 9:52 pm
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I will :) Yes I am still taking the thuja - it is month 3 now...since I need to be on it for 6 months to a year, I have a way to go still! I take it orally- drops mixed with water - not too pretty tasting but I just go with it! Definitely better than the MMS...
The other things I've been taking are bee propolis, vit C, calcium lactate, vit d3, b vitamins, fish oils, aloe vera juice, and raw shakes I make w/banana, raw cacao podwer, raw cacao nibs, a greens powder marine phytoplankton, maa powder, and raw honey. I have a shake for breakfast everyday. Lots of nutrition and antioxidants!
- By jamiegirl
- Posted October 8, 2009 at 9:54 pm
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geez I wish we could edit these posts! "podwer" -is powder, and after the greens powder, add a comma before "marine" ;)
- By akamai70
- Posted October 9, 2009 at 7:07 am
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Wow, that's a lot of work putting that shake together!! Do you pre-prepare any of it? I can barely get the kids lunch and breakfast made...but I know I need to prioritize my health!!! ;-)
- By dazednconfused
- Posted October 9, 2009 at 8:35 am
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jamiegirl and akamai--- your posts are some of the ones that sent me to Dr. G. in the first place, and for that I am thankful. I had my first exam last month, and it came back negative for high risk hpv in that 'area,' but did show ASCUS. He told me not to worry if I got a call-back, but of course I am!
But - for anyone considering an anal pap-- don't let this scare you off! If all is well, I will be extremely relieved, but if not, I'll know I'm doing everything possible to confront further problems. Just keeping my fingers crossed...
- By jamiegirl
- Posted October 9, 2009 at 1:18 pm
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I make the whole shake -throw it all together while the kids are getting dressed.... and now that I'm rereading my post, it's maca powder, not maa powder!!lol
- By jamiegirl
- Posted October 9, 2009 at 1:21 pm
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dazed - you are right - better to know and be able to deal with the situation. The UCSF website on which I originally found Dr. Goldstone is still down due to lack of funding, but again, anyone who needs to find a dr. can contact UCSF directly, I guess, to get the info from them.
- By akamai70
- Posted October 9, 2009 at 1:28 pm
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Hi Dazed,
I'm so happy you went to see Dr. G!! I'm so happy I heard of him from jamiegirl... It truly is wonderful to be able to share this information with our sisters in this. And I'm so glad you don't have anal hpv!! That's great news. You're going back to Dr. G for the high resolution anoscopy, right?? I hope so. As you probably know, anal paps are not as reliable as cervical paps (I don't understand the biology of it). Up to 1/3 of ascus results can be high grade displasia. In all likelihood you just have inflammation of some benign sort like I did, but why take a chance!!???? I'm learning that many doctors want to wait for 2 or 3 ascus results before they'll do the HRA, but what if you happen to be the person with high grade displasia...you certainly don't want to wait that much time to be treated.
We must be our own advocates. Until a health professional can absolutely guarantee that ascus on an anal pap is totally benign, I believe we must demand high resolution anoscopies.
It sounds like you'll be fine--and you're in good hands!!
;-)
- By dazednconfused
- Posted October 9, 2009 at 6:09 pm
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Thanks, akamai! I AM nervous! I get sick to my stomach when I think about it, so am trying NOT to think about it. I haven't even gotten as far as to ask him "what if" they find something. I don't think I could ever wait for 2 or 3 ASCUS results before finding out what was wrong.
Between my cervical dysplasia, the great information posted here, and a wonderful friend recently being diagnosed with stage 2 rectal cancer (don't know if that's HPV-related or not), I figured I'd better get it checked out. Will keep you posted--
- By dazednconfused
- Posted October 9, 2009 at 6:13 pm
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Jamiegirl - Thanks-- I just recently looked through the UCSF website. It's too bad they took the info down! There should be a lot more like them (and Dr. Goldstone) out there I know at least one woman here on Inspire has posted that her ob/gyn also does anal paps, but I think those Drs. are few and far between.
- By akamai70
- Posted October 9, 2009 at 6:32 pm
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Dazed--I'm so sorry to hear about your friend. I hope she recovers well, and quickly. I got a good feeling from Dr. G...if he felt or saw anything strange, he would have done the HRA on you right away. You're fine, I'm sure!! And if you have to have something treated, it'll be frozen or burned--and you'll be fine. Just be thankful you were proactive and educated. I'm telling anyone I know who's had an abnormal pap history to have an anal pap as well. And the more people who know about this and ask for it from their medical professionals, the better. There is power in numbers. xo
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