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Thread: 33 and my 1st ever papsmear

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  1. #1
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    33 and my 1st ever papsmear

    hi i am new to this forum I have just had my 1st papsmear ever yes I know stupid me just found it really invasive ha ha seems funny now anyways. it came back with glandular andecarcinoma in situ so I was like ok I have no idea what this is anyways was booked straight in to get a coloposcopy done and they took 3 biopsies there he also said you don't have cancer so you don't need to worry he also said mine is rare and he only sees 2 percent of people with it anyways didn't get the results of that test as I was booked in to get a cone biopsy done in a week when I was going into the operating theatre I asked what I was doing there as I didn't have cancer so why did they need to take another biopsy she looked at me strangley and said darling I don't know who told you that you don't have cancer but you do she said the last biopsy they took it was further up in the canal so that is why they had to do the cone biopsy has anyone else had this happen to them please she said she would ring me up this week sometime with the results

  2. #2
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    Quote Originally Posted by teganw83 View Post
    hi i am new to this forum I have just had my 1st papsmear ever yes I know stupid me just found it really invasive ha ha seems funny now anyways. it came back with glandular andecarcinoma in situ so I was like ok I have no idea what this is anyways was booked straight in to get a coloposcopy done and they took 3 biopsies there he also said you don't have cancer so you don't need to worry he also said mine is rare and he only sees 2 percent of people with it anyways didn't get the results of that test as I was booked in to get a cone biopsy done in a week when I was going into the operating theatre I asked what I was doing there as I didn't have cancer so why did they need to take another biopsy she looked at me strangley and said darling I don't know who told you that you don't have cancer but you do she said the last biopsy they took it was further up in the canal so that is why they had to do the cone biopsy has anyone else had this happen to them please she said she would ring me up this week sometime with the results
    Take a breath. I am 38. In June, I had an abnormal pap with HPV 16. I got a referral to an OBGYN who did a colposcopy. She didn't see anything wrong when she did that procedure, but it stated AIS. This lead to a surgical biopsy (cold knife cone). The pathologist wanted this specific type of conization because he wanted clean margins. If they did a different procedure it would have burnt the edges of the sample. This pathology also stated AIS. This lead to a hysterectomy - tubes, uterus, and cervix. They took the tubes as that is now believed to be where ovarian cancer starts. I say this not to scare you, but to let you know that this is the current recommendations for AIS.

    AIS is pre-cancer. Which means it is still cancer, but it is in its spot of origin. It has not spread. This is when it is the easiest to treat. AIS is difficult because it does not spread evenly - it can skip layers of cells, which makes it difficult to know if they got all of it. This is why, even if you get clear margins on the cone biopsy, hysterectomy is recommend if you are not planning on having any more children. If you are planning children, then a long discussion should be had with your gyn to determine the safest/best course of action. This should be conversations you have already had with your gyn (or at least my gyn brought it up once the colposcopy came back with AIS).

    I would recommend that you see an Gynecological Oncologist to at least get a second opinion as you travel down this road. I trusted my gyn but sought a second opinion with the gyn/onc who confirmed the plan my gyn had and agreed with it 100%. She even told me that recurrence of AIS would be very rare with a hysterectomy. So, I continued care with my gyn. After hysterectomy all pathology was negative, meaning the cone biopsy got it all. I still have to have vaginal smears every 6 months for 2 years then annually for 20 more. A good site for support for this is hyster sisters. Lots of women who have been through similar. Feel free to send me a private message if you need to talk. Its a scary road, but you will be ok.

  3. #3
    Moderator Top User jorola's Avatar
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    Hi teganw83,

    I am sorry you are so worried but I this you are getting mixed and confusing info from your doctors. Zigzag is right - glandular andecarcinoma in situ is pre-cancerous cells. I think you should have a sit down with these docs and maybe even a second opinion if possible to get a clear picture of what is happening with you and what your options are going forward. This is the only way you will get real answers.

    I always recommend writing down your questions in a notebook or scribbler and leave space between them so you can write the drs response down to the question. Also, if you can take someone with you as a second set of ears is also handy to have. It is not easy trying to absorb all this information at the best of times let alone when your emotions are running high.

    Please keep us posted and wishing you nothing but good news and good luck.

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  4. #4
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    Hi teganw,
    I have been through this and I'm here for you if you have any questions. I'm sorry your doctors were not clear and I hope you get more answers soon. Please keep us updated.

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    hi sandydog what was the next step after cone biopsy? please my results haven't come back yet she thought they would be back yesterday but they have a back log at pathology go figure lol and thankyou to everyone else that has commented I really appreciate it

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    Hi tegan, I'm sorry you're still waiting on those results. How frustrating. My biopsies actually came back positive for cancer and at that point, I was referred to a gynecological oncologist who quickly did diagnostic surgery to check my lymph nodes and stage my cancer. That's not to say you'll need this. Waiting is the hardest part. Hope you're hanging in there.

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    hi just an update got my results back and it is cancer so my doctor has asked me to come back in to get another cone biopsy done and she hopes that this will be able to get rid of it fingers crossed I'm still in pain from my last cone biopsy

  8. #8
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    Hi tegan, I am just seeing this- so sorry. How are you doing? I'm sorry you need another cone biopsy. Did they give you anything for your pain last time? When is the appointment? I hope you're able to keep busy until then. Please keep us updated or feel free to private message me. What got me through my cancer diagnosis and treatment was support from people who knew what I was going through. Hugs.

  9. #9
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    Hi everyone just an update on me got my 2nd cone biopsy today doctor said she will ring me with results in a week but no matter what results come back she has said i have to have a hysterectomy i really dont know how i feel about this. also was never told this till today she said even though they have taken 2 cervical cones its not showing them what they want to see i will post another update when i get results back thankyou for listening and giving me someone to tell my worries to

  10. #10
    Moderator Top User jorola's Avatar
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    Hi tegan,

    I am sorry for the stressing news. Just take time to digest and prepare your questions for the doctor when she calls. I know you are more in shock at the moment. Very understandable when surgery comes out of left field at you like that.

    And no worries - that's what we are here for! To listen and support. This place was a Godsend to me when my husband was first diagnosed so I completely understand.

    I just had my hysterectomy on Oct 27 so if you have any questions feel free to send me a message ok?

    Hang in there! And get some sleep!

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

 

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