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    Old 04-17-2004, 07:46 PM   #1
    tabs2b
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    angry and scared, scared and angry

    Hello

    I've been reading many of the posts from previous months and years. It's just overwhelming the number of women who are undergoing treatment for cervical dysplasia or cancer.

    I, too, had never heard that HPV could cause cancer. In the health classes I had (not THAT long ago HPV was called the "warts" virus..but no mention of cancer.

    I'm angry at myself for not having regular paps and I'm angry that more information is not out there regarding this problem.

    And I'm scared. Scared that the biopsy is wrong and instead of severe dysplasia, I will have cancer. Friends and family think I am overreacting--and hopefully I am! But, I know this is something I will have to worry about for a long time regardless of what the LEEP outcome will be.

    Sorry to ramble...I'm having the LEEP next Wed and I'm just getting anxious. I'm very ready for the surgery and the waiting to be over, but very frightened too.

    Thanks for listening.
    T~

     
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    Old 04-17-2004, 09:33 PM   #2
    dagiffen
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    Re: angry and scared, scared and angry

    i did have cancer but since you are being treated early even if it turns into cancer there is still alot of hope. i had paps every year on time! this years pap was abnormal in Jan. the nurse called to send me to OBGYN and said do not worry it may just be HPV, what the heck i ask?? so i look it up and from reading htink well ther is no cure but it said usualy does not cause cancer...so i did not worry. i had acopo in feb. came back moderate/severe dysplasia, my doctor said do not worry we wil do a LEEP and 90% of the time there is never another problem, so march i have aLEEP and do not worry, still seems no big deal right? results come back he calls to have me come in, i did not bring my husband becasue he said not to worry.....he tells me i have squamous cell carcinoma that is micro-ivasive and adenocarcinoma in situ, they are not sure if the leep got it there is a chance, and sends me to GYN/ONC still telling me this is a little more serious but do not worry..at this point i am worried, the cancer word was said! the GYN/ONC pathologist reviewed my slides and said the margins were clear the LEEP got the squamous cell carcinoma that was invasive, but margins were not clear on the AIS not meaning they did not get it, just hat they could not be for sure, i could have another LEEP as treatment. well i had already made up my mind, i am only 25 but my husband and i have 2 beautiful children, and we did not plan more, so i choose to have a hysterectomy, a week after my consult i had surgery (this past monday) my pathology report came in friday, the leep had in fact gotten everyhting my cervix did not have cancer, not even dysplasia, it was perfectly healthy after the LEEP. I am still very happy to have had ahysterectomy, no more periods, no more cancer worries, not much pain from surgery....etc etc. so i hope my story helps you, even if it is cancer, since they are watching you now, they can still get it, the only time to worry is if it is progressed, worry will just make your body sick! i do not know if i have HPV or not, i was never tested, but am requesting it at my follow up in 2 more weeks, but i have done alot of research, take vitamins, espically folic acid, quit smoking if you do so! there is also a major magazine with a 3 page article in it this month, i am not sure if i can say the name on the board or not???? i have not read it yet, but my sister called to say she did and it was very informative. if you have any questions feel free to post, i am on all of the time while recovering from this hsterctomy, i am not allowed to do anything bt sleep or surf...lol.. my husband gets onto me if i do anything!! i am so bored!

    Last edited by moderator2; 04-21-2004 at 05:59 AM. Reason: Please carefully read, know and follow the Healthboards.com Policies and Guidelines. Click on FAQ at the top left of this page. Thank you!

     
    Old 04-21-2004, 09:57 AM   #3
    Trooper
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    Re: angry and scared, scared and angry

    Quote:
    Originally Posted by tabs2b
    Hello

    I've been reading many of the posts from previous months and years. It's just overwhelming the number of women who are undergoing treatment for cervical dysplasia or cancer.

    I, too, had never heard that HPV could cause cancer. In the health classes I had (not THAT long ago HPV was called the "warts" virus..but no mention of cancer.

    I'm angry at myself for not having regular paps and I'm angry that more information is not out there regarding this problem.

    And I'm scared. Scared that the biopsy is wrong and instead of severe dysplasia, I will have cancer. Friends and family think I am overreacting--and hopefully I am! But, I know this is something I will have to worry about for a long time regardless of what the LEEP outcome will be.

    Sorry to ramble...I'm having the LEEP next Wed and I'm just getting anxious. I'm very ready for the surgery and the waiting to be over, but very frightened too.

    Thanks for listening.
    T~
    Well, I had annual paps since I had my first period. In February '03, my annual pap showed an abnormality. Three colposcopies and biopsies later, I am scheduled for a LEEP next Tuesday. I'm one day ahead of you.

    I'm not angry or really scared. I'm just taking this one day at a time and not thinking about it too much. I've had a year of dealing with this as my doctor said sometimes the lesions heal themselves.

    I'm sure I'll be a little upset on Tuesday morning, but I want to get this done and over with. I don't think that you need to worry about this the rest of your life. After the LEEP, you will go every few months for another pap until you have negative results for (I believe) 3 paps.

    I know it takes a while for cancer to develop from dysplasia.

    Just relax and don't worry! I know easier said than done, but don't make it worse for yourself.

    Hugs,
    Trooper

    editied to add that I am 32 years old now with no children

    Last edited by Trooper; 04-21-2004 at 09:57 AM.

     
    Old 04-24-2004, 07:28 PM   #4
    tabs2b
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    Re: angry and scared, scared and angry

    Thanks to you both for the replies!

    dagiffen--I hope your recovery is going well! You sound so positive which is great!

    Trooper--the reason I am so scared is that it has been several years since I have had a pap--life was just too hectic--and the reason I am a bit angry is that I think the dangers of HPV are not widely known. I hope your procedure went well last Tuesday!

    But, I am feeling better. I had the LEEP on Wed. and it was not bad at all. I've had very little pain. Now, I am just waiting for the final pathology results which I should have on Tuesday.

    Please wish me luck!
    T~

     
    Old 04-24-2004, 08:54 PM   #5
    sara52
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    Re: angry and scared, scared and angry

    Hello.....I have also been were you and the others are at...In 1997 I had an abnormal pap and was called back for a colposcopy and biopsy....I thought one or maybe 2 biopsies..No such luck for me.....When he painted my insides with a very stong vinegar solution I heard him say "Oh my God" I knew I was in trouble from that second on....I had regular yearly paps for many years and they were always normal....I made a big mistake thinking I didn;t need to have them that often anymore...I was 42 at the time.....It had been 4 years since my last pap...He took 10 biopsies that day and he was not encouraging at all when he was finished....4 days later I get a phone call and the nurse says the Dr. wants to speak to me...He got on the phone and appologized for doing this over the phone but there was no need for me to come to the office...He said I had squamous cell carcinoma and that it was very active and spreading..He then told me that he had already made me an appt. with an oncologist gynecologist at a cancer center 100 miles away......I was in a daze and initially refused to go to another Dr. I wanted him to take care of me...I had a good friend that had cancer-in-situ and he took care of her and did a hysterectomy at a local hosp...In other words I wasn't processing what he was telling me at all.....He finally made me realize I needed more than he could give and the Dr. he was sending me to was the best he knew....When I saw the oncologist it was the scariest day of my life...Just walking into a cancer drs. office is very unsettling....He initially thought I might only need a cone biopsy....This is done for 2 reasons...It is a diagnostic surgical biopsy but many times removing that large of a biopsy right at the cancer site is curative, if the margins are clean..Mine were not and I also had angiolymphatic invasion.......I had a radical hysterectomy, not to be confused with a total hysterectomy, and all pelvic lymph nodes removed...I had invasion in 2 nodes.....He told me I had to have had cervical dysplasia for MANY years...He said probably 10 or more for it to have progressed to an invasive cancer....He said this type dysplasia is very slow moving until it reaches a certain stage and then rapidly spreads and once it became a cancer it spread very quickly.....He also told me that is why it is suggested to have yearly paps because it is very easy to miss dysplasia on pap swabs but if you have your tests regularly then it would be found at a much sooner time than what mine was.....I saw him regularly for 5 years and am now declared cured and cancer free....Your dr. doing a LEEP, is in my opinion, very good news for you...Mine knew a LEEP would not do anything for me so I find that encouraging and I think you should too.....Remember this.....Dysplasia is not cancer, it is a change in the cells that can in some people progress to cancer if not taken care of......Even with an invasive active cancer it is possible to beat cervical cancer......Please let us know how this turns out..
    Sara

     
    Old 04-25-2004, 06:50 AM   #6
    tabs2b
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    Re: angry and scared, scared and angry

    Sara,

    Thanks so much for sharing your story. What an awful time that must have been for you. I'm so happy to hear that you are doing better and are cancer free!! Wonderful!!

    Did your doctors ever give you a reason why the dysplasia was not caught earlier than it was?

    Thanks,
    T~

     
    Old 04-25-2004, 11:20 AM   #7
    sara52
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    Re: angry and scared, scared and angry

    Hi tabs....I did ask about the missed dysplasia on PAP smears, I did not really receive a satisfactory answer.. .I mostly blamed myself for not having a pap for 4 years prior to my diagnosis but if dysplasia was there for 10 or more years then obviously it had to be missed...I do know that since the time of my cancer all PAPs are now double checked by pathology and read by 2 different pathologists....Im not sure when that came into effect but it has been a few years...I wish you the best of luck Sara

     
    Old 04-26-2004, 07:01 AM   #8
    Trooper
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    Re: angry and scared, scared and angry

    Quote:
    Originally Posted by tabs2b
    Thanks to you both for the replies!

    dagiffen--I hope your recovery is going well! You sound so positive which is great!

    Trooper--the reason I am so scared is that it has been several years since I have had a pap--life was just too hectic--and the reason I am a bit angry is that I think the dangers of HPV are not widely known. I hope your procedure went well last Tuesday!

    But, I am feeling better. I had the LEEP on Wed. and it was not bad at all. I've had very little pain. Now, I am just waiting for the final pathology results which I should have on Tuesday.

    Please wish me luck!
    T~
    My LEEP is tomorrow! I'm not completely freaked out yet, but I'm sure I will be.

    Wish me luck too!

     
    Old 04-26-2004, 11:35 AM   #9
    jjgo6
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    Re: angry and scared, scared and angry

    I am a 28 yr old single woman with no child. . I was told on April 16th by the Doctor that I have Endo Adenocarsinoma In Situ and needed a surgery. She said not to worry cuz I'm in a very early stage. She refered me to a Doctor at Beth Israel Hospital for "surgery" and further consultation. I called, the best the nurse could do is put me on April 28th to meet with the Doctor. The nurse said not to worry cuz the Doctor told her I'm in a "pre-cancer situation"! What?? I thought I heard it incorrectly. Then, I made my own appointment with a Doctor at Lahey Clinic for opnion, I was seen on April 22nd. This Doctor was nice and she suggested a "cold knife conization", and it can be done as soon as April 29th. Again, she said the same thing: not to worry about it. It is not a big deal. I did not accept the surgery offer because I'd like to hear what the Beth Israel Doctor has to say about my "cancer"!

    My dear friends, anybody has any suggestion? I am so scared! I was not able to sleep well since April 16th. I'm single and I had never had a child. Should I go for "hysterectomy" just to be safe? And, if "hysterectomy" is done, will I grow older much faster than normal girls? Help!

     
    Old 04-27-2004, 11:06 AM   #10
    preshy7
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    Re: angry and scared, scared and angry

    First of all, try to calm down, you will be fine!! I know this must be very stressful and scary, but the carcinoma in situ is not cancer. Also, be happy they found it and it will be removed. You are very young and I am sure the doctor will be conservative with the treatmant. You still want to have children so I do not see the need for a hyst. I am sure your doctor will agree. See how the cone goes. I bet they will get it all and then just follow up paps.

    My situation is that after all normal paps my doc found severe dysplasia. I had a conization (not cold knife though) and all margins were clear. A year later I had a few abnormal paps then a colpo showed i had moderate dysplasia. After another biopsy, my dysplasia was less but I still needed treatment so I had the cryotherapy. I am going for my next pap in a month and I hope its all cleared up. It can come back but I am being watched so closely now that I am
    sure they will catch anything if it happens.

    Good luck to you and let us know what you decide!

     
    Old 04-27-2004, 01:18 PM   #11
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    Re: angry and scared, scared and angry

    Quote:
    Originally Posted by sara52
    I did ask about the missed dysplasia on PAP smears, I did not really receive a satisfactory answer.. .I mostly blamed myself for not having a pap for 4 years prior to my diagnosis but if dysplasia was there for 10 or more years then obviously it had to be missed...
    Dysplasia can be missed in several ways. Let's start with the worst and work backwards to the most benign.
    1) Dysplasia is picked up by pap smear and simply missed or misread by cytologist. This is most often due to the sheer volume of pap slides cytologists are required to review in a given time period. So high is this volume that it is generally impossible to view every section of a particular pap slide under a microscope. There is no excuse for a lab that requires its cytologists to process so many slides that clearly and obviously abnormal smears are missed.
    2) Abnormal cells are picked up by pap smear and misread by Pathologist. When a cytologist identifies a questionable pap slide, it gets bumped up for review by a doctor who specializes in this stuff. The Pathologist can misdiagnose, just like any other doctor. (Hence, your paps now being reviewed by at least two pathologists is a good hedge)
    3) Abnormal cells are picked up by pap smear and obscured by other factors. Blood, for example. This SHOULD result in a pap smear result of "unsatisfactory" but sometimes might be labeled "normal" but difficult to fully intrepret due to blood/inflammation. In this situation, with no prior history of abnormal paps, your doc may or may not tell you the pap was unsatisfactory OR may not recommend a repap. Deciding to wait until next year for your yearly pap.
    4) Abnormal cells are present but not picked up during pap because not all cell types are sampled. For a pap smear to be satisfactory for interpretation, 3 types of cells must be present: endocervical, metaplastic, squamous. If the abnormal lesion is located in endocervical cells and the pap smear has squamous and metaplastic cells which look normal, but is lacking endocervical cells...the pap result may read "Normal" but incomplete due to lack of endocervical cells. Again, your medical provider may or may not do anything with a such a pap result. Ideally, if your provider knows you've had a prior history of abnormal paps, then he will advise you to get a repap in 3-4 months.
    5) Abnormal cells are present but not picked up during pap. This is what is known as 'sampling error.' It does NOT mean that your medical provider screwed up, but simply means that - since abnormal cells start as ONE CELL and human beings do not possess microscopic vision - a microscopic lesion of abnormal cells may be missed.
    Picture your cervix like a clock face, with the opening (the os) that leads into your uterus as the point at which the hands of the clock are fastened. When a medical provider takes a sample for a pap smear, they insert the instrument a little way up the os (that's where the endocervical cells are) and twirls it in a complete circle. Suppose that your abnormal cells are only 1-2 cells deep and located say, down at the 6 o'clock position. If your provider skims lightly over 6 o'clock (or skips over it), the lesion may be missed.
    6) Abnormal cells are present but patient let's yearly pap smears lapse. Any woman with a prior history of an abnormal pap smear (particularly one with a diagnosis of HPV) is dicing with her health when she skips a yearly pap.

    You can see that a combination of reasons 1-6 may result in a prolonged delay in diagnosing a cervical abnormality. This is not to excuse any lapse in judgement or comission of error. Just wanted to illustrate HOW such a thing could happen. That said, though, missing a cervical abnormality for 10 years is mind boggling. In such situations, it's a fortunate thing that cervical cancer is so slow to develop.

    best wishes,
    charli
    203/146/146 on the Fat Flush Plan for life

     
    Old 04-27-2004, 03:54 PM   #12
    sara52
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    Re: angry and scared, scared and angry

    Charli,

    Thank you for this much appreciated information......I never placed any blame on my physicians as to why my dysplasia was missed...I stopped having my yearly PAPs and it had been 4 years since my last one...I do know that the ONE cell that starts it all had grown to over 11 billion cancer cells before I was diagnosed....You seem to be very knowledgeable about this so may I ask another question of you pertaining to dysplasia in general.....I also have severe acid reflux disease that has progressed to Barrett's esophagus with (LOW-GRADE DYSPLASIA)....I have had reflux surgery but according to test results Im still refluxing so Im still on meds (PPIs)....I'm on a 6 month EGD and biopsies surveillance program...Do you know if having a prior cancer and dysplasia makes a person more vulnerable to other non-related cancers with progressing dysplasia?.......I know thats a hard question and if you don't anwser I certainly understand....I have asked all my Drs. this question and I dont get an answer, other than, "It means you certainly need to be watched".....I know that research and studies going on right now is checking for defects in the P53 and P6 genes as an indicator for esophageal cancer to develop from barrett's with dysplasia....I wonder if the P53 or P6 genes are defective in cervical cancer and dysplasia?.....Again, thanks for your explanation....
    Sara...

     
    Old 04-27-2004, 09:40 PM   #13
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    Re: angry and scared, scared and angry

    Cervical cancer is highly correlated with certain strains of HPV (it's in the high 90's). If you have ever been diagnosed with HPV (human papilloma virus, sometimes called genital warts) I would highly recommend that you have the digene HPV DNA test run with each pap smear. This would let you know if you have one of about 6-8 particularly virulent strains of HPV that seem to push cells towards cancer. In situations where HPV is a player, I would tend to doubt that it is related to acid reflux and/or Barrett's.
    However, if you have never been diagnosed with HPV, then genetics may well play a part. So might environment. I'm sorry, but I don't know the answer to your question.
    I CAN tell you that my kid brother also has acid reflux disease and not until he made major dietary changes has he been able to halt his medications and remain symptom-free.

    best wishes
    _______________
    203/146/146 on the Fat Flush Plan for life and perky. Veddy, veddy perky

     
    Old 04-28-2004, 07:09 AM   #14
    sara52
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    Re: angry and scared, scared and angry

    I was never told I had HPV at any PAP test...I just got out all my surgical notes and no where does it mention HPV, and I never seen any warts nor was I ever told I had any... Although I'm sure that doesn't mean it wasn't there...I know it is in around 95% of cervical cancer but it is not the only variable....My father had squamous cell carcinoma, skin cancer....My sister also has squamous cell carcinoma skin cancer right now...I can't help but think that genetics play a role in cancer....As for the reflux issue, I lived on ensure for months before my surgery as I had a stricture that refused to stay dialated and required monthly dilations until surgery....I still can't eat any real solid foods such as meat and I havent drank coffee, carbonated beverages, chocolate or any of my trigger foods for 2 years now......I have NO heartburn anymore but test results show Im still refluxing because I have new esophagitis and erosions since surgery...Just makes me wonder about the genetics of it all.....Even more confusing is the fact that EC caused from Barrett's in the esophagus is always adenocarcinoma and my previous cancer was squamous cell carcinoma.....A person could make themselves nuts by trying to figure it all out...I know this isn't the board to discuss acid reflux so I will shut up now....Thank you for all your advise....
    Sara

     
    Old 04-29-2004, 08:21 AM   #15
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    Re: angry and scared, scared and angry

    Daggifen, what is the name of the article? or magazine? I would love to read up on it. I don't blame you for getting the hysterectomy....... I just started with this dysplasia problem, and if it continues I would rather have the hysterectomy than worry so much all the time. God bless you and I hope you have a SPEEDY recovery!

    Karen

     
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