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Thread: 21 with squamous cell carcinoma in situ

  1. #1
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    Unhappy 21 with squamous cell carcinoma in situ

    I posted earlier on another thread similar to mine but no one seemed to respond. I'm just looking for advice or testimony from someone who's had the same or similar diagnosis as me. I'm 21 years old and I graduate Saturday with an Associate's in Radiography. 3 weeks ago I was diagnosed with squamous cell carcinoma in situ. I'm in complete shock, and I don't know what to do. After my LEEP procedure 2 weeks ago I went back for the biopsy result and I still have some cancer on my cervix. My Gyno said there was one margin that came back positive for abnormal cells. . . she mentioned the word follicular but I'm not sure what she meant hence I was in shock and can hardly remember the conversation. Anyways, I'm being sent to a cancer specialist in Lexington, KY. If anyone has any words of wisdom, I'd greatly take them.

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    Is no one seriously going to give me any advice? i'm scared out of my witts!! Maybe this forum isn't for me, I just needed someone to talk to who has been where I am now

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    Administrator Top User Didee's Avatar
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    Hello. I am sorry there hasn't been anyone replying to you. I hope that someone will do so. This is not one of our busy boards compared to others on here.
    I do hope that it goes well with your specialist. A good idea is to write down any questions you have so nothing will be misses during the appointment and also it helps to have someone with a second set of ears with you.

    This is such a horrible frightening time, having tests, waiting for results or other appointments.

    Good luck.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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    Senior User Bamabelle's Avatar
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    Hey, Radgrad. I posted just about all I have to say in the "21 just diagnosed with cervical cancer" thread started by a lady with adenocarcinoma.

    I thought what I had to say would probably apply, but I was treated for a big Stage I B II squamous tumor last December.

    Frankly, I don't get why doctors are making young women get all hysterical over scraping out cells for early cancers, "pre cancers" and "dysplasias." Seems they're doing the same thing with breast and prostate cancer and causing a lot of worry and overtreatment. That's especially the case in my town. They like to cut people up, especially giving hysterectomies to women for any reason, like it's 1985.

    Cancer is serious business, but many, many cancers aren't going to kill or severely maim you as constant as screening is nowadays.

    All I can say about mine is that it was 7 cm and with suspected metastases in the lymph nodes and lung. They said it was too nasty ("bulky" and "friable" were the words they used) to try to operate on, so I got six weeks of radiation with a complementary dose of Cisplatin and then four direct-rad brachytherapy treatments.

    Pelvis was all clear on three month scan. Doctors are still screwing around with the spot on the lung. Lit up a PET scan, but pathologist couldn't figure out what the cells were. Two doctors have told me to have it cut out, but it didn't do anything in the four months between scans, so I am not going to budge unless and until they tell me it's cancer. Surgeons chop out lung parts for conditions that turn out to be benign about 50 percent of the time, ahd I am unwilling to undergo that much trauma while recovering from treatment without a definite life or death reason.

    So that's my story. Not as much detail and medical jargon as your typical patient tale around here, but I don't get paid enough to pretend to understand the fine points.

    My advice is the same as it was for the other post ... . It's normal to feel freaked out and have your world rocked. But odds are you're going to be OK. Can't say what they were getting at with "folicular' as related to your cervix ... all I have seen is that you can get weird cysts called follicles in there. ASK YOUR DOCTOR and NEVER HESITATE TO ASK FOR INFO TO BE RESTATED OR REPEATED WHEN YOU'RE AT AN APPOINTMENT! That's not my strong suit, and it had me going with the flow and almost into treatment I didn't want until I found a new doctor rather than growing a pair of stones and saying no to mine.

    All I can say is that I am not a doc and it still sounds early and curable with minimal damage in my nonprofessional opinion. I never had regular gyne care, so I don't know anything about early diagnosis and excision procedures. With me it was a big hemorrhaging tumor that finally got my attention.

    Good luck. Believe it or not, you will feel normal and get over the "I can't believe it's cancer" feeling.

    I'll be more regular about checking back here if it sounds to you like I might be able to answer any questions.
    Dxed with Stage IB2 cervical cancer by one doctor and IVB by another in 10/11. Finished six weeks of pelvic chemorad in 12/11. Lung tumor found in 10/11 dxed as IB NSCLC in 8/12. Dec. '12 scan showed clear pelvis, no growth in lung tumor and new activity in remote lymph nodes. Is it a Stage I and a Stage IV, three Stage Is, or a cured cancer with something benign going on? Lost interest and went off the reservation after a year of unsuccessfully fighting for a good biopsy.

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    Have you had any surgery yet or seen the specialist?

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    Thank you so much for sharing with me, and Yes I have had a LEEP done already (if you were referring to me nicole) but not all was taken care of. Tomorrow I go and see a specialist. I am a nervous wreck. I have no clue as to what they may want to do. I just pray that it will be simple and just another LEEP.

  7. #7
    Hun read my story here at www.mystoryofcancer.com (I hope it helps!)
    Good luck sweetie! I know it's frightening!

  8. #8
    did you see my reply? please read my story at www.mystoryofcancer.com I hope this helps!

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    I just now have been able to get back on here, and thank you so much for sharing your story with me. I do have wonderful news though. After seeing my specialist I am now cancer free!! I am truly blessed and I will continue to say a prayer for everyone that is still fighting! Thank you for all of the support and positivity!

  10. #10
    Administrator Top User Didee's Avatar
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    Great news, congratulations!
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

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    Out of all the things I have lost, I miss my mind the most.

  11. #11
    Senior User Bamabelle's Avatar
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    Congratulations!

    Now for the buzzkill: a.) You're not officially "cured" till you stay cancer-free for five years. b.) You're asking for it to come back if you haven't stopped unhealthy habits that promote it, most notably smoking.

    I can't find an on-point citation, but if you look around, there's been a good bit of publicity for research about smoking and malnutrition and squamous head and neck, lung and skin cancers. Cervical's the same kind of thing, just a different location.

    So go forth and be happy and all, but steer clear of unhealthy behaviors, especially till you reach the big five year mark.
    Dxed with Stage IB2 cervical cancer by one doctor and IVB by another in 10/11. Finished six weeks of pelvic chemorad in 12/11. Lung tumor found in 10/11 dxed as IB NSCLC in 8/12. Dec. '12 scan showed clear pelvis, no growth in lung tumor and new activity in remote lymph nodes. Is it a Stage I and a Stage IV, three Stage Is, or a cured cancer with something benign going on? Lost interest and went off the reservation after a year of unsuccessfully fighting for a good biopsy.

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    Thank you for all the congratulations, and the reminder of the 5-year thing. However, I DON'T smoke. I do exercise and eat healthy. I did make some mistakes sexually and I paid for that. But, again, thank you.

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    Hello , i am a new user , can you check that i have put my question in the right thread please? Subject: cervical cancer smear and hpv , thankyou in advance.

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    Read my post , this has just happened to my niece ! Why would a doctor say she had stage1 cancer from a smear with hpv ? still do not understand it when they havent even given a colospocpy?

  15. #15
    Senior User Bamabelle's Avatar
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    Hey, I replied to your original post with a link that should be helpful. If your niece is going by a phone conversation only, seems to me it would be real likely that she misunderstood what the doc was saying. It's hard to understand English period after a doctor utters the word "cancer."

    http://www.cancerforums.net/threads/...065#post138065
    Last edited by Bamabelle; 07-22-2012 at 04:58 PM.
    Dxed with Stage IB2 cervical cancer by one doctor and IVB by another in 10/11. Finished six weeks of pelvic chemorad in 12/11. Lung tumor found in 10/11 dxed as IB NSCLC in 8/12. Dec. '12 scan showed clear pelvis, no growth in lung tumor and new activity in remote lymph nodes. Is it a Stage I and a Stage IV, three Stage Is, or a cured cancer with something benign going on? Lost interest and went off the reservation after a year of unsuccessfully fighting for a good biopsy.

 
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