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    Old 07-18-2007, 06:49 AM   #1
    jujukitty
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    Abnormal paps, dysplasia--this is so confusing!

    Hi, I'm new here. I had my first abnormal pap four years ago (after over 20 years of normal). It showed as ASCUS. I was positive for high-risk HPV, so I had a colposcopy and biopsy. Biopsy came back as "chronic inflammation." The next 2 years I had a colp every six months, then every year after that. She never saw anything on the colp, but every time I still got the same ASCUS result on the pap. I moved to a new state a few months ago and scheduled my regular exam and colp with a new doctor. He said he'd rather do another pap first instead of doing the colp right off. Okay, so last night the doctor called me and says now it came back as "high-grade dysplasia." I assume that is the HGSIL I've read about. So, he says to schedule the colp now, and they can get me in "within the next few weeks" (like I want to wait that long???)
    Everything I read on the web just confuses me. One says HGSIL is NOT cancer, one says it is (just not invasive), one says it can be, one says it can be not as serious as the pap would indicate. I want to know now what is wrong with me and how they're going to fix it, and I'm going to have to wait for the colp (which I wish he would have done first off like I'd scheduled) probably wait for a biopsy result, etc.
    Needless to say, this is freaking me out! I came here to talk to actual women who have been through this instead of reading medical sites. Thanks!

     
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    Old 07-18-2007, 09:02 AM   #2
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Welcome jujukitty! I know all of this can be very confusing and overwhelming at first. I urge you to read back through the threads on the board and you will see that there are so many similar stories and a lot of very knowledgable women on here. Also, look around the internet as well. There are so many great places to look and there is information everywhere.

    The "severe dysplasia" or CIN III as it is also called is not cancer. Sometimes that term is interchangable with CIS (or carcinoma in situ) which basicly means it is cancer but it hasn't invaded beyond the surface cells. The word cancer in itself is scary, however you need to rest assured that you do not have cancer. Even if it did one day develop into cancer this is one of the most treatable forms, especially when caught in the early "pre-cancerous" stage.

    I had the same fears as you with my severe dysplasia. I was pregnant at the time and had to wait for treatment until a few months after giving birth. I had a LEEP/cone done and have been doing great since. I did have an abnormal pap at my 9 month visit and when I got the colpo the doctor said my cervix is still healing and there was no dysplasia. I have every reason to be optimistic.

    You need to be optimistic too. The best way to be is to absorb as much knowledge as you can. Keep us posted with your colpo results and your treatment. This is a great place for support!

     
    Old 07-18-2007, 09:11 AM   #3
    jujukitty
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Thanks, Happymom! My significant other just doesn't get this "female stuff" (he barely understands how periods work, in spite of having raised 4 girls!) and my mom and sister have never had this kind of thing happen. I've been reading here a lot and it's so good to hear other women's actual experiences with this mess.
    I realize it's not an immediate life-threatening emergency, but the waiting is just such stress. I guess they figure I'll just go on for the next month like nothing happened, eh?
    Thanks again!!

     
    Old 07-18-2007, 09:15 AM   #4
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    Re: Abnormal paps, dysplasia--this is so confusing!

    I also had normal paps for over 20 years. Over a year ago I got my first ASCUS and six months later it was LGSIL. Each time a colposcopy was done and each time it was negative. Two different doctors performed these and neither saw any lesions on my cervix. After the LGSIL and neg. colposcopy, the doctor said I needed a LEEP. I had one this January and CIN II was found and the margins were unclear. I just had my first pap since then and it came back LGSIL with the hpv still present. Since January I have been to two differen gyn. oncologists (before my post LEEP pap results) and they told me my cervix looked healthy and there was NO WAY the pap would be anything but normal!

    I have done a lot of reading and have found that you can have adenocarcinoma higher up in the endocervix and squamous cellsin the lower part of the endocervix. I go back in September for a pap and ECC with the gyn. oncologist and I want them to somehow rule this out. If they cannot, I will pursue a hysterectomy.

    This may sound drastic, but if no one can see these lesions and given the circumstances described above, I need peace of mind. I am tired of the worry and doctors appointments.

    msremi

     
    Old 07-18-2007, 09:30 AM   #5
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    Re: Abnormal paps, dysplasia--this is so confusing!

    hiya,

    here in england once you have a pap reading of cinIII (severe dysplasia) trhey aim to get you an appointment for a leep within two weeks.

    two weeks hoenstly isnt much tiem atall, especially if you have been having ok readings up untril now.

    it takes upto ten years for cinIII to develop into invasive cancer, and thats if it ever does.

    i know its hard but for now just concerntrate on trying to relax, stressing will lower your immune system more.

    two weeks will honestly pass in no time atall. many of us girls here on teh board have been diagnosed with severe dysplasia (myself included). have a read through some of our previous posts and i promsie you you will begin to feel much more at ease about it all.

    knowledge is the key :-)

     
    Old 07-18-2007, 09:38 AM   #6
    jujukitty
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Hi Becks,

    Two weeks wouldn't have been so bad, but I have to wait four weeks. They did say they'd call if anything opened up sooner, so maybe I'll luck out. I'm just not a patient person, but I'll work on it.

    Thanks!

     
    Old 07-18-2007, 03:18 PM   #7
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Quote:
    Originally Posted by jujukitty View Post
    Everything I read on the web just confuses me. One says HGSIL is NOT cancer, one says it is (just not invasive), one says it can be, one says it can be not as serious as the pap would indicate
    Hi jujukitty & welcome !!! : )

    HGSIL is considered to be a high grade lesion, a precancerous condition, and not cancer. The severity of the lesion is classified by grade LGSIL (low grade) and HGSIL (High grade). The abnormal cell growth is called cervical dysplasia & is linked to the high risk strains of HPV. Dysplasia is separated into categories known as CIN:
    CIN I- Mild dysplasia- a few abnormal cells in the lining of the cervix
    CIN II- Moderate dysplasia- half the cells in the lining are abnormal
    CIN II- Severe dysplasia- the entire thickness of the lining is abnormal

    Carcinoma in situ is often clumped together with CIN III, and is referred to as cancer in place but still not cancer. I know, confusing as heck. Basically, what is keeping it from being classified as cancer is it has not spread beyond the surface & invaded the tissue.

    As for it saying it may not be as serious as the pap indicates, this basically is just leaving a margin for error. It is possible for there to be a discrepancy from the pap to the colpo/biopsy. The pap may say HGSIL (CIN II-III), and the biopsy may confirm LGSIL (CIN I). Or it can also go the other way, as it did in my case. My pap said LGSIL (CIN I) My colpo/biopsy pathology report stated HGSIL (CIN II-III) and my LEEP pathology report came back confirming CIN III.

    The colposcopy/biopsy pathology report is crutial in terms of determining proper treatment. It REALLY REALLY REALLY REALLY REALLY REALLY sucks you have to wait a month. I am so sorry you have to go through all of this. I can tell you through experiencing the waiting is never ending, so for your own sanity, try your very best to distract yourself. I know that is so much easier said than done too. In fact, you and I are in a similiar waiting boat. I have to have a cystoscopy done in four weeks, which is kinda like a colposcopy for the bladder sort of speak. My appointment is on August 13th, and I know this waiting is going to stink royally, but I also know I have to find a way to keep myself occupied for the sake of my mental well being. Plus the stress does contribute to the physical. Thankfully the women here are remarkably supportive, and full of knowledge and experience which truly helps.

    Again, welcome & sorry you are going through this. If it makes you feel any better you are not alone in the four week count down...actually...it still stinks huh, but better to go through it with someone else than alone. Hang in there, cause the waiting unfortunatley keeps on trucking...

    Hugs!!!

    Last edited by gorgikin; 07-18-2007 at 03:46 PM.

     
    Old 07-18-2007, 03:33 PM   #8
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Quote:
    Originally Posted by jujukitty View Post
    Hi Becks,

    Two weeks wouldn't have been so bad, but I have to wait four weeks. They did say they'd call if anything opened up sooner, so maybe I'll luck out. I'm just not a patient person, but I'll work on it.

    Thanks!
    i know it will be hard for you playing the waiting game, but even four weeks, i assure you isnt that long......my first abnormal pap was taken in sep 06, it takes about 6 weeks under a doctor to get results here in lincoln (under the hospital it takes 3 so i get them quicker now), then i had to be refered to the hospital when the result wa sthrough, so it was about 10 weeks from the date my pap test was taken to when i had my colpo and punch biopsy.

    tho it doesnt help at teh moment, teh one good thing i have found, is nwo i'm under a specialist, i get treatmenta nd results much quicker than ever before.

    soem members on here have also had to wait - for various reasons - for a slightly lengthy period for their treatment; four weeks really will not make a great difference, although i know it will be hard.

    i tried to find soemthing els eto concerntrate on rather than when i was having treatment, that way i didnt dwell sio much.


    thinking of you.

     
    Old 07-18-2007, 04:47 PM   #9
    jujukitty
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Thanks, Becks and Cyn!! This forum is saving my sanity, truly. I'm working almost no hours at my job for the next six weeks (due to one boss quitting and not being replaced yet) so I'm home alone with plenty of time to worry about this. : P If I was at work I could at least have a distraction.
    My appointment is August 14, a day after yours. I think I'll start making x's on my calendar or something.
    My poor SO doesn't know what to do, because he's a fixer and he can't fix this, and he doesn't understand it. Heck, my mom doesn't even understand what's going on. I told her to do a web search. : )

    Thanks so much, you guys! If you have any tips for taking my mind off of this, feel free to pass them on.

     
    Old 07-19-2007, 01:09 AM   #10
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Hi juju!

    Welcome to the board! I'm sorry to hear about your abnormal paps and HGSIL result on the last pap. I, too, have been having abnormal paps for almost 3 years now and all my biopsies have come back benign until this past May which showed I had between CIN I and CIN II.

    Freaking out is entirely normal! If no one around you is going through this, you feel entirely alone and it's very hard for women who aren't going through this to relate. They can sympathize, but not empathize. So that's what we're here for!

    Believe me when I tell you that this is incredibly common. This is not a good thing, of course, but take some comfort in the fact that it's not as rare as you may have initially thought. At least 80% of sexually active people have HPV but just not everyone exhibits symptoms (warts or abnormal paps). Lucky us, we get the abnormal paps!

    Remember that paps are only a screening tool. They cannot tell us what is wrong with us exactly, only a biopsy can do that. So even though your pap came back high grade, your biopsy could show maybe low grade or no dysplasia.

    Even if your biopsy comes back as high grade (CIN II or CIN III), there are options for treating this dysplasia. It is NOT cancer but merely the precursor to it. In fact, not all CIN III progresses to invasive cancer! It is more likely to progress than CIN I or CIN II, but it's not an absolute indicator that you will get cancer if you leave CIN III untreated. However, to avoid that risky chance of it becoming cancer, there are several minor surgical options to remove the pre-cancerous lesions (LEEP, laser, etc).

    Also remember that waiting a few weeks for a biopsy is not a threat to your health AT ALL. Dysplasia is very, very slow to progress -- it takes up to 10 years to go from dysplasia to invasive cancer! So the only danger in waiting a couple of weeks is the mental aspect--- the waiting game is the worst, psychologically speaking!

    I hope these boards help you. Please don't try and freak out now, there really is no point! You don't know what's going on exactly until you get the biopsy, which may show nothing! But even if it does come back as some type of dysplasia, rest assure that it is ALL very easily and simply treated with minimal risks involved.

    In the meantime, I would recommend certain lifestyle changes. Get plenty of rest, quit smoking if you do, exercise regularly, eat PLENTY of veggies and fruits, and look into taking some vitamin supplements to help suppress your HPV strain. Oh and avoid STRESS! That's also really important. There are some threads on this board that mention specific supplements, food choices, and lifestyle changes that are aimed towards making the HPV strain dormant.

    I hope you're feeling better about this! Trust me, I was an emotional wreck when I found out about my dysplasia. But two months later after talking to the girls here and doing my own research and diet/lifestyle changes, I feel much more in control and in charge of my body and life than when I just got diagnosed. I know that sounds a bit trite, but this type of condition is easily managed and monitered. Remember that many other women around you are going through this and keep yourself informed! Take care and let us know how things go for you!

    Last edited by LAgirl81; 07-19-2007 at 01:10 AM.

     
    Old 07-19-2007, 07:02 AM   #11
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    Re: Abnormal paps, dysplasia--this is so confusing!

    Quote:
    Originally Posted by LAgirl81 View Post
    In the meantime, I would recommend certain lifestyle changes. Get plenty of rest, quit smoking if you do, exercise regularly, eat PLENTY of veggies and fruits, and look into taking some vitamin supplements to help suppress your HPV strain. Oh and avoid STRESS! That's also really important. There are some threads on this board that mention specific supplements, food choices, and lifestyle changes that are aimed towards making the HPV strain dormant.

    I hope you're feeling better about this! Trust me, I was an emotional wreck when I found out about my dysplasia. But two months later after talking to the girls here and doing my own research and diet/lifestyle changes, I feel much more in control and in charge of my body and life than when I just got diagnosed. I know that sounds a bit trite, but this type of condition is easily managed and monitered. Remember that many other women around you are going through this and keep yourself informed! Take care and let us know how things go for you!

    Thanks so much! As far as lifestyle changes, I don't smoke (never have), and have for the past several months been trying to eat better (more protein and veggies and less sugar and carbs. Unfortunately I can't stand most fruit). I also just started taking some supplements (I have done that sporadically but am going to be consistent now). Are there specific supplements that help? I heard folic acid somewhere, so I got some of it.
    Stress is a hard one--I have a stressful job when I'm working, and now I'm on very limited hours so I'm stressed because I have no money! Not to mention I'm having perimenopause symptoms like mood swings, insomnia, and anxiety attacks.
    At least today I am out of the "I'm going to die of cervical cancer soon" mode, but I still am having a hard time with not being able to start fixing this NOW NOW NOW. I suck at waiting. Only 28 days and counting until the next step.

     
    Old 07-19-2007, 11:48 AM   #12
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    Re: Abnormal paps, dysplasia--this is so confusing!

    oh trust me i know what you mean!!! when i first found out i had CIN I/II i envisioned all types of worst-case scenarios. even my mom told me i was losing it a bit and suggested i see my school's counselor! haha! i actually did see her for one session and really help me put things in perspective and helped me with the mental anguish part of all this dysplasia crap. but coming to these boards and venting is also a form of therapy, i think!

    i think the best thing is to keep yourself busy. and trust me, the more time that passes, the less this will occupy your mind. i was obsessed with all this at first, but it's been 2 months since my biopsy results came back and I feel pretty calm and in control about this! compared to two months ago, i feel pyschologically more at ease!

    the not knowing what's going on on your cervix can drive you nuts, though. rest assure that even in the worst-case scenario, which would be CIN III, there are quick and easy treatments for that. and that's the worst that can happen! really not too bad at all.

    Search the boards for natural/health treatments for dysplasia. Also, search online for Doctor Tori Hudson's "Preventing and Treating Cervical Dysplasia: A Natural Medicine Perspective." She treats dysplasia naturally (which is a regimen I'm doing right now) but she also lists vitamin supplements and food choices that are geared towards suppressing HPV and helping reverse dysplasia.

    To recap, some important things are:

    -folic acid (BIG doses, up to 10 mg a day- you may need a prescription from your doctor)
    -beta-carotene
    -vitamin C
    -viamin b complex or find a good multivitamin
    -lots of veggies with a dark tint and high in folic acid (spinach, kale, collard greens, broccoli, etc)
    -dark-skinned fruits (cherries, blueberries are EXCELLENT for us, strawberries, blackberries, etc.)
    -make sure you get your daily protein (eggs, chicken, etc)
    -brown rice instead of white
    -green tea!
    -try and limit coffee intake (one cup every other day is okay)
    -limit refined sugar intake

    Anyway there's more but look around online and you'll find some helpful stuff. Let me know if you have more questions about supplements, etc! Take care

     
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