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    Old 06-09-2009, 07:32 PM   #1
    7588
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    Scared! Atypical Glandular cells.

    Hi, I'm new to this board. After years of normal annual paps, I had a pap smear with ASCUS two years ago(with an HPV negative test). Due to my having exposure to DES (synthetic hormone given to pregnant women in 70's to prevent miscarriage, linked to cancer, infertility and defects in offspring), my doctor performed a Colposcopy and ECC. Results were fine. I returned 6 months later with a normal pap result.

    I went for my annual pap two weeks ago (1 year since my last pap) and received a pap report last week of Atypical Glandular Cells (undetermined significance) . Again, HPV testing was negative. My Doctor performed a Colposcopy, ECC and Endometrial Biopsy yesterday. She said the Colposcopy looked good but still wants me to see a Gynecological Oncologist, regardless of my biopsy results! She communicated that even if the results are all normal, I am not in the clear due to the nature of AGC cells. She explained that aggressive follow up will be needed, as serious disease often presents within 1.5 years following an initial AGC pap result.

    Having read up on AGC and the statistics, I am freaked out. I have not had children yet and am frightened by the thought of my fertility being at stake. I feel that my fear may be irrational. However, hearing the word Oncologist would alarm anyone, no? Is my Dr. being a bit alarmist? The reality of having had no prior precancer/cancer & being HPV negative to suddenly having a doctor mention Oncologist seems a bit over the top! I'm a bit of a nervous Nelly and am doing my best to not be irrational but don't want to be in denial either! Has anyone on here had a AGC without it being a major ordeal? Any advice? Opinions? anything would be appreciated!

    All that I have read from you ladies has been unbelievable! You've all had some serious obstacles, sadness, second chances, grace, tough decisions and serious learning occur in your lives. And you're all so helpful to one another. What an amazing place I've found!

     
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    Old 06-09-2009, 08:05 PM   #2
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    Re: Scared! Atypical Glandular cells.

    HI , I too have had this come back on my pap smear. My last pap was in Jan. and the first week of Feb. I got a call from the Dr. office that my pap came back abnormal again. After I found out it was the typical glandular cells ( this time) I didn't know what to do. My Dr. scheduled me for a D&C to see what was going on . She thought it was my uterus..It took 2 weeks for the pathology report to come back and that was worst phone call I got from my Dr. office. I was told that I could not miss the appt. I had and they needed to know I would be there. I know something was not wright this time. They found that I had Endocervical Adenocarcinoma in-situ. This is a rare cervical cancer that only 10-15% of women get. That day was the most scared I have ever been . I have been dealing with abnormal pap since Nov.07 I had the leep done to remove abnormal cells. I just had a cold knife cone biopsy done on April 10,2009 it has been 6 weeks now . They said they got all of the cancer ,but I still think there is some still in on my cervix .. I go back to the Dr. in July to schedule my hysterectomy.
    I would make sure your Dr. does a boipsy or a D&C to see what is going on . I pray that everything works out and you don't get the phone call I got.

     
    Old 06-09-2009, 08:41 PM   #3
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    Re: Scared! Atypical Glandular cells.

    Hey there,

    Here's my experience to date: I received an AGUS result six months ago. Given my age (29) the doc. did a colposcopy, cervical biopsy and ultrasound. All my tests came back okay. The biopsy was fine and the ultrasound did not show anything unusual. My uterine lining looked healthy (not too thick - which, I believe can be indicative of uterine cancer). She told me to come back in six months time.

    I'm now at the six month mark. I have been experiencing what seems like two periods. I have been back on the pill for some time now, after a small hiatus, although I do recall getting some abnormal period off of it as well. I seem to bleed heavier after intercourse ... not sure if that's typical or not. I feel like this abnormal bleeding is more hormonal than it is related to the AGUS (i.e. I have experienced more break outs and hormone-related symptoms) ... but anyways. Because of the abnormal bleeding my doc. this time around did a repeat of all the previous tests, another pap and an endometrial biopsy.

    And so, I'm back in the same boat as you (awaiting results for another 3 weeks!?) ... but I hope that this message is in some way reassuring, as my first set of tests came back okay.

    Can I ask how old you are, 7588? And please keep me updated! ...

    Thanks!

    Last edited by Mo-S4; 06-10-2009 at 06:52 AM. Reason: Please stay on the topic of the thread starter and her question. Thanks.

     
    Old 06-09-2009, 10:18 PM   #4
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    Re: Scared! Atypical Glandular cells.

    Hi Imy! I am 37 years-old! Sounds like your Doctor is on top of it! The Endometrial biopsy seems prudent. My hormones have fluctuated and caused both break outs and different flows throughout the years. Three weeks sounds like an awfully long time to wait for results though! I hope you don't have to wait that long! Thanks for sharing your experience thus far. I will keep you up to date as well. I was told that the results would be 2 to 5 days. However, I've a feeling I'll hear from them by next week! Crossing my fingers for you and wishing the best!

     
    Old 06-09-2009, 10:33 PM   #5
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    Re: Scared! Atypical Glandular cells.

    Hi CCfighter, Thanks for your quick response. I am so sorry to hear of your diagnosis. Have you gone to a Gynecological Oncologist? A close friend of mine, who is an MD., warned me not to make any major decisions (i.e., hysterectomy, trachelectomy) without consulting a Gyn. Oncologist. I am sure you're way ahead of me on this. Just wanted to pass along the information in the case that it can help. I hope your spirits are okay. If you need to vent or talk, I am here. You're in my thoughts! Sending a big hug to you in Charleston.

     
    Old 06-09-2009, 11:18 PM   #6
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    Re: Scared! Atypical Glandular cells.

    I am so sorry that you are having to deal with this! ((((((hugs)))))))

    I think going to the gyn/onc is prudent for two main reasons: the glandular involvement, and the DES factor.

    Most gyns aren't sure how to handle glandular involvement. They don't see if very often. I say "fine." Get me to a doctor who knows the disease process and what to look for, how to treat it, given my personal situation (age, desire/lack of fertility, etc).

    It is possible that you might be able to have a CKC or a trachelectomy to spare your fertility, at least for a time. I'm sure Zoe and some other ladies will jump in and share their trach information with you.

    I was 44 when I was diagnosed with adenocarcinoma Ia1. I had a history of 25+ years of annual paps that always came back good. My doctor (a GP) did the HPV test with my pap that year. The pap was normal, but the HPV test was positive for high risk HPV. Long story short, I ended up with a gyn who did a colpo (didn't need to take a biopsy - nothing was wrong) and an ECC (thank God!). The ECC came back adenocarcinoma in situ. Two weeks later, I had the CKC. Two weeks later I was sitting in the gyn/onc's office. Two months later (I was allowed to wait a few months to get my life in order before needing the recovery) I had a total LAVH (uterus and cervix only). I didn't need chemo or radiation. My one year post-op is next month, but June 18th is my hysterversary and my first official "no evidence of residual tumor" date.

    I hated hearing the words "biopsy" and "oncologist" for the first time. I wept when I went to the cancer center for my first appointment. I was told to go see the "financial counselor" before seeing the doctor. I disolved into a puddle of tears thinking I'd need a finanial counselor to pay for "this". It ended up, she offered me hugs, and tissue, and water, and then told me I was responsible for my regular ol' $30 co-pay each time I saw the doctor. WHEW!!! I now kind of laugh about me being that worked up, but I also tear up typing this remembering the panic I felt.

    Anyway, all of that to say that I think going to the gyn/onc is prudent.

    Write back. It is getting late and I'm losing focus on what I'm writing. I know there will be many more ladies who jump in and share their stories, and offer words of encouragement, and insight for you.

    I'll check back tomorrow. Until then, you are in my prayers!

     
    Old 06-10-2009, 08:16 AM   #7
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    Re: Scared! Atypical Glandular cells.

    Hey,

    Just want to jump in here and say to all you ladies that GLANDULAR STUFF SUCKS!!!!!!!!

    And I agree with every thing Pickle Eyes has said ESPECIALLY the part about going to a gyn/onc! Regular gynos just do no know anything about glandular changes. The gyn/onc is the expert.

    As Pickle said, there are ways to spare your fertility. I'm 26, so that was a major issue for me. (I typed that and then realized I had a birthday! I'm 27!)

     
    Old 06-10-2009, 08:40 AM   #8
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    Re: Scared! Atypical Glandular cells.

    HI 7588 & Imy ,
    I am 35 .. Once the D&C came back cancer my Dr. sent me to the gyn/oncologist . Which at the time she had told me that she thought he would just go ahead and do the hysterectomy because I was done having children ( Thank God). When I went to see him that day it was the scarest day of my life. We talked over everything and Had told me that me he doesn't like to call this cancer because mine was not invasive .. So He did the cone biopsy and when he did the surgery he then called it cancer ,because of how much he had to take out .. He told me he never had to remove that much cervix to get it all. I waited for the results which came back that they got it all. THat day in the office he told me sorry for not taking it so seriosly and that I would need to follow up in 3 months ( after healing ) to schedule the hysterectomy. I have a 20% chance of this coming back with in 1-3 years . They also told me that this is a jumping cancer and I did my research on this and that is what it says. Meaning that it can be in one place then be somewhere else they don't know about. So i'm happy they told me they got it all,but in the back of my mind I think it can still be in there.
    I have been dealing will abnrmal pap for so long now. That I just want the hysterectomy done now. I go back in 6 weeks to make sure I"m healing ok and to schedule the surgery. I'm not sure if they will do another pap or not.
    For all of you on here that are going through some form of this I pray for each one of you. The words cancer and onocoloigst are words I never thought I would hear in my life, but I have to be strong and get through this because I have 3 children that I have to be strong for. Oh my dr did tell me this is because I have HPV.
    All I can say you know your body and if something just doesn't seem wright and you don't like what your dr. is saying please get a second or third opion.

     
    Old 06-10-2009, 09:59 AM   #9
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    Re: Scared! Atypical Glandular cells.

    Wow Pickleyes! You've had quite a journey. 44 is awfully young to have a hysterectomy. I hope that you've healed well and the road has not been too hard for you. It's amazing to me that something like this can creep up after years of normal paps. I don't understand how this happens. I suppose you don't have to get it, you just have to deal with it right? I can relate to the tearing up. I've been crying like a baby for a week now. It's overwhelming and scary. I know that I have not even been diagnosed with anything. It's just that the Doctor and literature I've read all sound so grim! The thought of not having kids or even the changes of a hysto fill me with fear! I'm trying to be positive and not freak! I think reading the stats may have been a mistake! Too much info lets the mind run wild! I am sure you've been there! Thanks for your kind words. They really do make a difference!

     
    Old 06-10-2009, 10:01 AM   #10
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    Re: Scared! Atypical Glandular cells.

    Yes, Lily21 it does suck! You're so young! So unfair! Please tell me about your experience. I am relieved by the thought of fertility saving options! Thanks for the kind words!

     
    Old 06-10-2009, 10:27 AM   #11
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    Re: Scared! Atypical Glandular cells.

    Quote:
    Originally Posted by 7588 View Post
    Yes, Lily21 it does suck! You're so young! So unfair! Please tell me about your experience. I am relieved by the thought of fertility saving options! Thanks for the kind words!
    Well, I had my first pap smear ever at 26. Not having one wasn't really that risky for because I don't have the DES issue and I didn't have sex until I was 25!!! That's right. I'm lame.

    Anyway, my pap result was ASC-H which basically means they can't rule out high grade abnormalities. They didn't do an HPV test. So then I had a colposcopy. She took 2 biopsies. One came back CIN 1, and one came back CIN 2. Because of the CIN 2, my gyno recommended a LEEP. I seriously contemplated not having it done, but my gyno said she would be as conservative as possible and remove only about the size of a dime.

    The LEEP went fine, but when they did the pathology on it they discovered adenocarcinoma in situ. BUMMER. I thought I was done. So then I had a cold knife cone biopsy to remove a much larger piece of my cervix. The surgery wasn't really a big deal. I got the good news of "clear margins" meaning they think they got it all!

    So now the plan is for me to go in every 3 months for a colposcopy, pap smear, biopsy if needed, and ECC. I just got my 3 month follow up results and everything was good.

    My gyno and one gyn/onc I saw basically told me to hurry up and have kids and then get a hysterectomy ASAP. The other 2 doctors I saw seemed to think there was no reason to rush. I tend to agree with no rush opinion because those were the 2 good docs I saw. The other two were CRAP.

    I've also had 3 doctors (my intial gyno and 2 others) give the opinion that my cervix still looks good and that they don't think I'll have any problems during pregnancy! Woo hoo!

    So things for me are looking good. Though I seriously would be completely crazy by now if not for the wonderful ladies on this board.

    I am so glad you are seeing the gyn/onc. I suggest at least 2 gyn/oncs. I've seen quite a few doctors as you can tell.

    Last edited by LilyL21; 06-10-2009 at 10:34 AM.

     
    Old 06-10-2009, 11:17 AM   #12
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    Re: Scared! Atypical Glandular cells.

    SO happy to hear that it is going well for you! Thanks for sharing such personal information. It really does suck that you have to deal with this, but it sounds as if things are looking up! Congrats. The positive story gives me a bit of hope. (: I'm certain I will be rushing to have a baby if I get the ok after this. I was already worried about having delayed it for too long before this disconcerting pap! If all of this goes well, I'll have a baby solo if need be! Otherwise, frozen eggs, here I come! I feel like a weight has been lifted being able to share here. I understand how this community could help one maintain sanity throughout the ordeal. Thanks again! Have a great day!

     
    Old 06-10-2009, 03:57 PM   #13
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    Re: Scared! Atypical Glandular cells.

    Hi 7588 --

    Sorry I didn't jump in sooner but I've been swamped at work lately.

    First off, I agree with everything Pickle and Lily have said. Going to a gyn/onc, while it sounds serious and scary (and is), is the best thing for you, not only because of the glandular involvement but because of the DES. I *believe* that DES is actually linked to some of the rarest forms of cervical cancer, either clear cell or neuroendocrine (those are like 1-3% of all cc). The other two types are squamous cells and adenocarcinoma, to which AIS is a precursor. A lot of reports and physicians will say that adenos are "rare," and you'll see a lot of stats saying they compromise only 5-10% of all cc. According to my oncologist at Yale, adenos are on the rise percentage-wise in areas where there is good screening and healthcare, and the actual number is closer to 30% -- reason being that squamous problems are much easier to detect with regular and adequate screening, so those cases are getting picked up before they become invasive cancer.

    In any event, AIS, while sometimes referred to as Stage 0 cancer, is not actually cancer -- so don't be so quick to label yourself as having been diagnosed with You are still a long way off. EDITED: (I meant to address this to ccfighter -- sorry!)

    As for the fertility issues, even with early invasive cervical cancer you can usually have your fertility spared by having what's called a trachelectomy, either radical or simple. By definition, a trach is a cervix removal, although it's a bit of a misnomer as they don't actually remove the whole thing, and leave about 5-10mm. A simple trach takes just the cervical tissue, and is basically like a very large CKC (cold knife cone); people who have had multiple LEEPs/CKCs sometimes also end up with the functional equivalent of a simple trach. A radical trach takes the cervical tissue and the top 1cm or so of vagina, which is resected to the bottom of the uterus (it sounds much worse than it is). With either procedure, a permanent cerclage is also placed so as to sustain a pregnancy, although delivery would have to be by C-section. The important thing is that the uterus remains intact. There is an increased risk of miscarriage and second trimester loss, about 25%, and close monitoring is required. Bedrest may also be required. BUT, for invasive cancer or recurrent high grade dysplasia, a trach is an alternative to a hyst and will leave you with the ability to bear children. The recurrence rates for trachs and hysts are the same, so it is no less safe to have this procedure. Radical trachs are generally only offered to women who desire to retain fertility and who are Stage Ib1 or lower (simple trachs can be used when there is only micro invasive, Stage 1a1, sometimes early 1a2 or recurrent dysplasia). Depending on your stage, you may also have a lymph node dissection to rule out lymph node metastasis.

    I was diagnosed this January with Stage 1a2/1b1 adenocarcinoma, at age 39 (no children YET), after 20+ years of normal paps. I was diagnosed with hr hpv in May 2008 and told to return in a year for follow up (my pap at that time was normal except for the hpv), and "luckily" I had a problem in Nov that led rather quickly to my diagnosis. I had a radical trach and minimal lymph node dissection 2/25/09. Thankfully I had no residual disease (my CKC of 1/15/09 actually had gotten everything, although they couldn't be sure because my margins were so close), and my lymph nodes were all clear. I had the procedure laparoscopically and vaginally, so I only had a few tiny cuts, and my recovery has been rather uneventful. I just had my first official follow up last week, and got the great news Monday that my pap is all clear. My onc told me to go try and get pregnant next month -- so that's the plan They normally like you to wait six months to a year, but given that I just turned 40 he told me to get moving, not because of the cancer, but because I'm getting up there age wise!

    ccfighter, I had a couple of responses but I think you might have your own thread started? Plus this response has gotten way too long. I will add another response later if I can't find an appropriate place to direct my questions to you!

    In any event, 7588, I hope I've made you feel a little better that at long last the US is catching up to other places and making great strides in retaining fertility in women with cc. And like Lily said, glandular problems suck. Keep us posted on what's going on!!!

    Last edited by zoe96; 06-10-2009 at 04:43 PM. Reason: clarity/mistake

     
    Old 06-10-2009, 04:26 PM   #14
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    Re: Scared! Atypical Glandular cells.

    Great post, Zoe, thank you!

    However, I think that thinking of AIS as cancer has some merit. Yes, it is scarier this way, but it also makes you more aware of needing to take good care of yourself. I feel the need to change my lifestyle, eat healthy, exercise, take control of things - and the big old scary C word is what motivates me, it's a wake-up call.

     
    Old 06-10-2009, 04:33 PM   #15
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    Re: Scared! Atypical Glandular cells.

    Quote:
    Originally Posted by ccfighter View Post
    Once the D&C came back cancer my Dr. sent me to the gyn/oncologist...We talked over everything and Had told me that me he doesn't like to call this cancer because mine was not invasive .. So He did the cone biopsy and when he did the surgery he then called it cancer ,because of how much he had to take out .. He told me he never had to remove that much cervix to get it all. I waited for the results which came back that they got it all. THat day in the office he told me sorry for not taking it so seriosly and that I would need to follow up in 3 months ( after healing ) to schedule the hysterectomy. I have a 20% chance of this coming back with in 1-3 years . They also told me that this is a jumping cancer and I did my research on this and that is what it says. Meaning that it can be in one place then be somewhere else they don't know about. So i'm happy they told me they got it all,but in the back of my mind I think it can still be in there.
    I have been dealing will abnrmal pap for so long now.
    Hi cc --I thought you had a thread of your own but guess I'm wrong. What I'm not understanding is you say you were diagnosed as having cc as a result of a D&C? If so, that doesn't fit with a diagnosis of non-invasive cancer. Do you mean you were diagnosed with AIS as a result of the CKC? You shouldn't have malignant adeno cells located in your uterus unless you have an invasive cancer, even taking into consideration the possibility of contamination during the D&C (meaning they pick up some malignant cells as they pass through the infected cervix as they are doing the D&C). Not to scare you, but if you indeed had malignant cells in your uterus, then that suggests you have a much more extensive problem than AIS (which is still a precancer), and I can't believe they want you to wait three months to have a hyst. Invasive cancer that's spread to the uterus needs to be addressed ASAP.

    My other comment is if you *only* have AIS and you had clean margins on your CKC, (and anyone who regularly posts knows I am not in any way trying to downplay the severity of that diagnosis), then why is your doctor pushing you toward a hyst? I understand that you are done having children, but that's a major surgery, and I would think perhaps another large cone or a simple trach would be an option for you which will reduce your recovery time.

    As for this being a "jumping" cancer, it's not that it can jump all over your body. Adenos and its precursor AIS can be sneaky and skip some layers of tissue, but it's not going to "jump" from your cervix into your uterus. Another lesion will generally be within a few millimeters of the original one (so if you have clean but very small margins, there is a possibility that something will have *just* been missed). However, 1cm (10mm) of clearance is generally considered a comfortable margin that nothing is missed, even when you are dealing with invasive cancer. So, seeing as a cervix is usually anywhere from 2.5 - 4 cm in length, even if you have a larger cone already, if you have clean margins, a repeat cone or simple trach should be able to get a significant enough sample that if there's no residual disease, you will be assured that nothing is missed.

    Keep us posted on how you are doing and what else the doctor has to say!!

    Last edited by zoe96; 06-10-2009 at 04:38 PM. Reason: grammar/spelling/clarity

     
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