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Old 06-27-2009, 06:23 AM   #1
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Question New HPV dx - in rectum?? Please help!!


First, to anyone who responds to my post, a HUGE thank you! I'm absolutely terrified out of my mind; the gastroenterologist I was sent to was so rude to me; made me feel as if I was a nasty, dirty person (I'm not, but even if I were, I would deserve better treatment than that - EVERYONE does!) who caused this to herself and deserved it. Trust me; that end's an OUTTIE, not an INNIE!! To each their own - I'm no judge, but me personally? I was violently raped many, many years ago, and that particular "end" (yeah, pun intended! ) holds no interest for me! (They are cute to look at though! Anyway, he "forgot" to give me the results of the biopsy (polyp removed; in recovery he told me it was no big deal, and to call them in 20 days if I hadn't heard from him), when I called to get them at the 20-day mark, his nurse was appalled and said it was stuck at the bottom of his stack, and that she was moving it to the top; she'd make sure he'd get in touch with me. He called me about 5:30 that night and said I probably had cancer and it was caused by the HPV virus, and that I had a husband, right? I told him I'd been divorced for over 14 years, to which he, with anger in his voice said, "well, you have a PARTNER then, right???" I again said no; had been single for close to two years. He said, no, you MUST have a partner!!". I reiterated my statement that I'd been single for almost two years, then he got really angry and said "well, they need to be tested!" He's just told me I probably have cancer, and now he's making me feel as if I'VE given THEM some disease?? Trust me, I'm a very clean woman, and am VERY careful about who I'm with; I check with my doctor before I get in a relationship to ensure I don't have anything, and try to ensure he does the same thing - or thought I did (last guy cheated). I felt nasty, dirty, like some sort of ****. I got off the phone shaking; more upset about the fact that I had an STD and had just been treated like Typhoid Mary than the fact that I may have cancer. It was a bad night. I promptly forgot any tiny bit of information he gave me and tried calling the following day to get a call back from him, to no avail. He wouldn't call back. Not the following day, either. I was told the following day I could make an appointment if I wanted to find out more information. Yeah, like I want to deal with THAT a&& again - NOT!

So, I asked his nurse what was written in my chart as far as what the pathology showed; she said that the polyp that was removed was a "condyloma acuminata with focal severe dysplasia (and from what I recall, it's right at the edge of my rectum). I saw my gynocologist Thursday; she read a bit of a report from the pathologist who is recommending (I'll try to remember this part as best I can) biopsies of the anus and rectum, as well as the peri-anal area, biopsies, perhaps, of the vulva (not sure of that though), and thorough exam of the area around and between the vagina and anus. No need for biopsies of cervix, as I had a complete hysterectomy at 34 y.o. Not sure if HPV can invade vaginal walls though, and if biopsies need to be done there? Also unsure if a second opinion colonoscopy would be a good idea?

My questions to all of you are this: What am I dealing with? What IS this, other than HPV, which, really, means nothing to me. Reading through a bit on this blog (which, btw, I am SOOOOOOOO grateful to have found!!!) it appears to be more than I thought. It "seemed" to be "nothing more" than something that would go away on its own in a couple years; sometimes if a person got a "bad" version of the virus you might end up with cancer, but otherwise, no biggie. The little I've gleaned (admittedly not much), this doesn't appear to be the case. I'm seeing my surgeon on Monday, and I'd really like to be somewhat armed with some knowledge. I can't seem to find ANYTHING about an HPV rectal polyp; don't know what severe dysplasia means, don't have a CLUE what treatment for this could entail (whether it's cancerous or not), and worst of all (on an admittedly shallow plane), how on EARTH does a person tell family that it's HPV and not cancer, if that's what it turns out to be - particularly MINE?!? They'd make that doctor look like a walk in the park... Oh, and somewhere down the line, maybe, a question. Does it ever go away? You know, as in "if I ever met a man and fell in love, could I ever have sex again?", or should I just pretend I'm 90 and decide right now that part of my life's done and over with because now I really AM Typhoid Mary for the REST OF MY LIFE!!?? And how, HOW do you deal with the anger towards the person who gave it to you???

As you can probably tell, I'm scared, I'm angry, I'm confused, and I have no knowledge about this at all. I apologize for babbling on, and I hope you were able to cull through the word vomit to get the information I wanted to pass on so that you could answer the questions I so desperately need answered. I hope, too, that you'll forgive me for being so "needy" and feeling the need to tell you more than you probably needed to hear about the gastroenterologist; but somehow, maybe I think that since we're dealing with HPV someone else may have had a similar experience (I hope not!!) or at least can understand my feelings of being made to feel guilty when it wasn't MY fault, which made me angry. It's not something I can just go around telling people; stupid as THIS sounds, I hope it IS cancer and NOT HPV, because there's no way I can tell my family it's HPV and get any kind of concern at all. All they'd hear is "STD" and they'd be humiliated - doesn't matter about ANYTHING else. Not how I live my life, nothing. Not statistics, nothing. Just that term. All of a sudden, it'd be all my fault somehow. How do you tell people when you're dealing with something that appears to be as big as this appears to be?? And how do you deal with it when you've a relative newcomer to your city, and your friends live in other states?

Wow. I'm a mess. I hope someone has some words of advice!! (And a great joke would be AWESOME!! *grin*)

Thanks for listening. And thanks for your time...

~~R

 
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Old 06-27-2009, 10:02 AM   #2
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Re: New HPV dx - in rectum?? Please help!!

(((((Hugs)))))) I am so sorry that you have had to go through this!!! I am thinking some very horrible words to describe your doctor! If he suspected cancer, he should have called immediately, not let your file fall to the bottom of his stack.

I'm about to run out the door, but want to say that I strongly encourage you locate a colorectal oncologist (or something like that). You need a second opinion and based on that doctor's bedside manner, I'd say you need a new doctor anyway!

I'll check back later today. I have more advice, that wanted to jump in and say Hi, and give you a hug! (((hugs))))

 
Old 06-27-2009, 02:01 PM   #3
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Re: New HPV dx - in rectum?? Please help!!

Thanks for the hugs, they're much appreciated!

I'd already decided to fire that doctor; in fact, one of the things I did was tell the referring physician about my experience so no other woman experiences what I did. It gave me some semblance of control, albeit a small one... But now, I'm left wondering what this IS, and finding no information anywhere - this seems like the place to find it. And looking at my post, I realize I shouldn't even have put that information in, but I am so distraught over the situation, beginning at the beginning with the doctor; in my mind, it somehow seems relevant, even though, in the long run, I know it isn't (if that makes any sense).

Anyway. Thanks for taking the time to respond, and I look forward to hearing back. Hope your day goes great!!

 
Old 06-27-2009, 03:11 PM   #4
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Re: New HPV dx - in rectum?? Please help!!

I think it is fine (and relevant)! It is helpful to have information, so that I can give more individualized suggestions, otherwise I (or anyone else who responds) talks in general terms.

Have you asked for copies of your pathology reports? If not, I suggest you go pick those up as soon as you can. I suggest you go as far back as your first infection and/or bad pap. They'll give you plenty of information about what the doctor have sent for biopsy and specifically what the results and recommendations were.

You need to know that there are many doctors who are quite uninformed on HPV. They only know what they learned in med school, however long ago that was for them, or what they learn in the media. They don't keep up on research. It is, unfortunately, pretty common for doctors to make a patient with HPV feel like he/she is promiscuous or that his/her partner is/was promiscuous. All it really takes is for someone to have a sexual encounter (not just sexual intercourse, but all sorts of sexual play) with someone who is infected to be exposed to the virus. Each partner increases one's chances of being exposed to various strains.

I've been interrupted several times while writing this, so I'm going to go ahead and post now. I'll check back later!

 
Old 06-27-2009, 03:56 PM   #5
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Re: New HPV dx - in rectum?? Please help!!

Actually, this is the first I've heard of it in relation to me. I'm 47, and had a complete hysterectomy at 34 due to endometriosis, fibroid tumors, ovarian cysts and andometriosis. Since then, I've not had pap smears, nor any gynecological care, as I was told it wasn't necessary, since I no longer had a cervix. The reason I had a colonoscopy is because *I* thought the endometriosis might have returned, since I was having the same sort of symptoms, and had been told it could return since I was on HRT. I'd gone to a gynocologist, who told me the pain was too high, and referred me on to a gastroenterologist. The colonoscopy found a polyp at the bottom (?) of my rectum; pathology dx'ed it as "condyloma acuminata with focal severe dysplasia." I don't recall ever having an abnormal pap in the past; it's been a long time since I had one, but those records are long since boxed and filed.

I see the surgeon on Monday - any advice?

Thanks so much for your help; you've no idea how much it means to me!!

 
Old 06-27-2009, 07:49 PM   #6
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Re: New HPV dx - in rectum?? Please help!!

Ah, I see.

First of all, [stepping onto soapbox for a second] as long as you have a vagina and/or labia, you need to be seeing someone for a vault smear (not technically a pap smear). The doctor scrapes the vaginal cuff (where the doctor tied off the vagina where he/she removed the cervix and uterus) and sends the tissue for pathology, just like happens with a pap. Because you've had a hysterectomy, I can understand the doctor spacing out those scrapings/paps (for simplified explanation), but I'd think no less frequently than every 3 years (maybe 5 at a max). [/ steps off soap box]

You might look at the information on the website for the Center For Disease Control. Look up HPV. The high points on information are that there are over 100 strains of HPV. There are over 30 strains that can affect the genitals (vagina, vulva, cervix, penis, anus/rectum, mouth/throat). Of those 30 strains, some are low risk and can cause genital warts (or in those other areas I mentioned); other strains of high risk and can cause - worst case scenario- cancer.

When I was first reading on HPV I was so confused and wasn't able to distinguish between whether someone was talking low risk or high risk. It is really important to know that to know if what the person has to say has anything to do with you.

I first really started learning about HPV in January of 2008 when I was diagnosed with high risk HPV. I'd always had good paps (since I was 19 and I was 44 at that time) every year. By April, after many medical tests, I was diagnosed with cervical cancer (adenocarcinoma Ia1). The HPV had been causing cellular changes for years, but the doctor didn't know because of the location of the cellular changes. That area can't be scraped during a pap. Anyway, since January 2008 I've read a LOT about HPV and cervical cancer. I post here so I can help inform people who might be as afraid and uninformed as I was.

Now, more suggestions since your appointment is coming up. I suggest you ask for those pathology reports; ask for every one you can get your hands on. You won't understand everything on them, and you can decipher them later (with the help of an online search engine and some medical sites). Take a written list of questions/concerns/requests to the appointment. Leave room to write questions. I find the written list helps me stay focused and my doctor usually looks over the list before we actually start talking so she can hopefully answer more than one question at a time.

Take a deep breath. Then take another one. And then another one. Keep doing that until your brain doesn't feel like it is short wiring (ok, maybe your brain doesn't feel that way, but mine did before appointments and before I started to understand what was going on).

((((more hugs))))

 
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