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  • Cervical Adenocarcinoma: recurrence ?'s

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    Old 02-16-2009, 11:54 PM   #1
    Prunella
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    Cervical Adenocarcinoma: recurrence ?'s

    Hi! I am new here...
    In 2007 I began having missed periods, strange pains, and had a feeling something was not right. So I went for a pap even though I was not due for one. Well, trust your gut instinct! I was diagnosed AIS and underwent a cold knife cone. If I remember right, the MD notes said he removed a 4cm by 1 cm size cone and he told me it was a large area, since my margins were deep. It was very close to invasive. So all of my follow-up paps, colpos, and ECC's have been clear and I was put back on a yearly pap last June. (I opted for the cone for fertility and would do a trach before hystr)

    Recently, I have begun to have the missed periods, fatigue, and pains I recall from the first time around, some new pains as well. I decided to just go in- last Wed. for a pap to be safe. I got a voicemail today from the obgyn, which I don't take to be a good sign at all...usually I have to pull results out.

    I am scared it has returned and I barely have any cervix left. I am wondering.... what are the chances of mets (worst case scenario) with cervical cancer, what tests should I ask for (colpo, ECC, CT w/contrast, MRI, blood tests, vag ultrasound, chest x-ray, ect..?), has anyone had the recurrence problem after CKC? Why is adeno so darn agressive and how does it travel? Can it move into the uterus or ovaries? I don't want to miss anything
    I'm going to call first thing tomorrow....sigh, I am SO not ready to get back on this ride Thank you so much for being here I've learned so much from you all already

     
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    Old 02-17-2009, 12:27 AM   #2
    JessicainCanada
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    Smile Re: Cervical Adenocarcinoma: recurrence ?'s

    Hello and welcome to the board......

    I'm sorry that you are going through what may be again AIS. It sounds like what has brought you here will allow you to help others, and get some information and a shoulder to lean on in the process.

    I have no idea what the recurrence rates are with what you are going through, and uterine cancer.However I do know that the correlation between low stage cervical cancer progressing to ovarian cancer is VERY low. When a cervix/uterus/ovary or falopian tube is removed the tissue is never 100% removed(there will always be residual), so from what I have read there is a small chance of areas very close to the affected part being @ a higher risk for precancerous/cancerous cellular changes.

    One positive thing about all of this is that you are knowledgeable in the stages and treatments with AIS, I've had to learn as I go and WISH I'd known more. You will find the ladies here so very helpful however this turns out.

    Jess~

     
    Old 02-17-2009, 11:42 AM   #3
    zoe96
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    Re: Cervical Adenocarcinoma: recurrence ?'s

    First, hello and welcome, although I'm sorry for the circumstances that brought you here.

    I would suggest calling your doctor's office right now and insisting they give you the results! If they called you, they already know what's up, so there's no reason to leave you hanging in suspense.

    I'm no expert, but since I am having trachelectomy surgery next week, I am obviously concerned about recurrence, et cetera. What I'm giving you info-wise is from a ton of online research, but also from the answers I've gotten from my docs, including my treater at Yale, and second opinions at UConn and Sloan.

    First, a 4cm cone sounds a little large, since the cervix is usually only about 4cm long to begin with, and I don't believe they're more than about 2cm wide...but I could be wrong. I know my cone was a moderate sized one, and was 6mm deep, 2.0cm wide on the bottom, and 1.6cm wide at the top of the cone. <<EDIT: I was wrong about my dimensions, and changed that to correct my error>>

    As for the remaining cervix, unfortunately yes, adenocarcinoma can recur....if you *only* had AIS to begin with, then unless the HPV infection persisted, your risk of recurrence should have been low. If you had minimally invasive cancer (generally considered to be 3mm or less, sometimes are much as 5mm or less deep), then most doctors recommend a hysterectomy, although some are now coming around and offering the trachelectomy without you having to pull it out of them! You would have been diagnosed with Stage Ia1 or Ia2 if it was invasive at all, so I suspect you *only* had AIS, as I doubt you'd forget hearing that you actually had cancer.

    Now, I'm Stage Ib1, but am just barely out of Ia2...and one of the doctors I recently treated with said that they *could* just do another big cone, and if they got clean margins, then theoretically that's all the treatment I would need, and that I would *probably* be okay....but, my risk of recurrence, or the risk that they would just miss a skip lesion was much higher than if I had a trach (which is what I ultimately opted for). It's the skip lesions that make adenos so tricky. Unfortunately, I don't really have an answer as to recurrence rates of AIS, but for adenocarcinoma, with hyst or trach, recurrence rates are about 2-4%. Other risk factors that increase the chance of recurrence are whether or not there's lymphovascular space invasion (LVSI), or whether there was lymph node metastasis, as well as whether clean margins were obtained or not. From what I've read, with actual invasive cancer, if you have no LVSI and no positive lymph nodes, as well as clean margins from surgery (hyst or trach), then your chances of recurrence are very, very low, approaching zero, as the 5 year survival rate is nearly 100% (if you look at the data out there, the relatively few recurrences almost all have either LVSI and/or positive nodes).

    I was also recently told that adenos *generally* do not go to the lymph nodes as quickly as squamous cancers do, but this can happen, which is why depending on your stage, a lymphadenectomy is also usually performed (and I believe that usually starts with Ib1 and higher, but it may start with Ia2). It really depends on the individual circumstances. I was also told that with my level of invasion (5mm in depth), it would be unlikely that it would have spread to the uterus at this point. So, from what I understand, this thing generally spreads up and out, then into the lymphovascular space and/or lymph nodes, and that anything further is sign of advanced disease....and if you just had the CKC in 2007, I doubt it could have gotten that far that fast; but, I just don't know that for sure. I know given enough time this can also spread into the bladder, and that sometimes a cystoscopy (viewing of the bladder) is ordered. I also have heard that adenos supposedly grow faster than squamous cancers, but how fast either goes, again, I don't know (and wish someone would give me an answer!).

    I can tell you what I had after my CKC diagnosed me as having invasive cervical cancer. I've had a CT, MRI and a PET scan, to look for evidence of any residual tumor (my deep margin was barely clear, my endocervical margin was clear, and the ectocervical margin was not clear). Luckily there is no evidence of any residual tumor, nor is there evidence that this has spread anywhere else. Each test looks for different criteria, but put together they can give a really good picture of what's going on (or hopefully, what's not going on!). Unfortunately all of this reassurance doesn't rule out the possibility of microscopic involvement, but everything I've had strongly suggests that there is nothing else going on. So that is why although I'm thrilled with all my test results so far, and it looks like they actually already got all the cancer with my cone, I am still terrified that there will be microscopic evidence in my lymph nodes or further up the cervical canal that could cause me to need radiation, chemo, or a hysterectomy. Unfortunately, nothing short of surgery and final pathology will give a definitive answer as to what is going on. FYI, my CT and MRI were of the pelvis only, and the PET was pretty much top of head to mid thigh. Worst part of them all was awaiting the results!

    Sorry I don't have really great answers for your specific questions, but hope some of this helps. AND, let's hope this is all for nothing, and that there is nothing really bad in your pap....please let us know! I'd say if anything they'd probably want to do a colposcopy if there's something on your pap, and I would definitely ask for an ECC (Pickle I'm sure will jump in and agree!!), so they can see what's going on further up -- although perhaps with your prior history with AIS they might be more aggressive. Unfortunately I don't think your insurance will pay for CT, MRI or PET scans unless/until there is a suspicion or diagnosis of something more advanced, but if your doctor offers them to you, I would definitely have them!

    Please let us know how you are doing, and hopefully you can report in some good news!!!

    ((hugs))

    Last edited by zoe96; 02-23-2009 at 07:25 PM. Reason: incorrect info -- edit noted in body of text

     
    Old 02-17-2009, 06:12 PM   #4
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    Re: Cervical Adenocarcinoma: recurrence ?'s

    Prunella, I am so sorry you are having to deal with this again.

    Jessica and Zoe have give you some great information.

    Just as some background, I was 44 when I was told that I was positive for high risk HPV. I had had a pap every year since I was 19 and I'd never had a bad pap. I was (and still am) in a monomgamous marriage of 16 years. A month or so after the HPV news, I had my first colpo. The doctor didn't need to take any biopsies because my exocervix looked fine. "Just to check" she did an ECC. It came back AIS. Two weeks later I had my first cold knife cone. It came back Adenocarcinoma Ia1. Two weeks later I was sitting in the gyn/oncologist's office discussing my treatment plans. Fortunately, I "only" needed a hyst to remove my cervix and uterus. I didn't need any chemo or radiation.

    Speed forward 11 months and here I am. All tests have come back "no evidence of residual tumor." My doctor tells me (and I believe) I am very lucky that the cancer was caught so early.

    Anyway, what do I suggest for you? Have your doctor do a colpo with an ECC. I had an ultrasound of my lower abdomen as well as a transvaginal ultrasound. Get the name of a gyn/oncologist and see what he/she has to say. You've been diagnosed with AIS once, I would think a gyn/onc would have no problems seeing you again. Request copies of your reports from 2007 and see what they say. You'll need to have copies sent to any other doctors (for any second opinions). And make a list of questions to take with you. Leave room to write your answers. Oh, and call as soon as the doctor's office opens (you might even call "before they open").

    How does AIS spread? Let me back up and tell you about the two types of cells that make up the cervix: squamous and glandular. Between the two areas there is a Transition Zone (TZ).

    The outer cervix is made up of squamous cells. This is the area that is seen and sampled during a pap. The colpo also looks very closely at this area and a bit of the TZ (further up the canal). Dysplasia in the squamous cells is seen easily, grows relatively slowly, and grows outward from the initial leasion. Squamous cells make up the outer 1/3 of the cervix.

    The upper 2/3 of the cervix is made up of glandular cells. Dysplasia there is more difficult to identify since that area can't be seen or sampled by a pap or a colposcopy. The only non-surigical way to sample this area is with an ECC (endocervical curettage). Glandular cell dysplasia grows here, there, and elsewhere. I have read that it is called "skipping cells" meaning it skips over healthy cells to grow a lesion elsewhere. Glandular cell dysplasia grows more rapidly than squamous cell.

    For those reasons, doctors treat glandular cells dysplasia (and AIS and AdCa) more agressively than they do squamous cells dysplasia (and CIS and Ca).

    Again, I am so sorry that you are having to deal with this gain, but I am so glad you didn't put it off. You are tackling the situation head-on.

    I hope that info helps a bit. Please write back and let us know what you find out! (((hugs)))

     
    Old 02-18-2009, 12:49 PM   #5
    Prunella
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    Re: Cervical Adenocarcinoma: recurrence ?'s

    Oh, you girls are so helpful and so caring, I want you to know how you are so appreciated I have very good news, probably the best news... The doctors office was only calling to tell me that the test was negative!! I am ecstatic, this is not the news I was expecting at all! Rarely do they call with good news....
    I think the lesson here is that there is always going to be my fear of recurrence, but I will always remember the good news, good people and this example of amazing care. You know, this has really brought me a huge dose of HOPE, FAITH, and THANKFULLNESS, which we all need, regardless of remission or current battle.
    As for learning more about adenocarcinoma, I am still searching for info as well, Zoe I am so grateful for the info you posted, you are in my thoughts, please keep us updated on the surgery, hunny...I am sending good energy out there for you!!
    Thank you so much!

     
    Old 02-18-2009, 01:25 PM   #6
    LilyL21
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    Re: Cervical Adenocarcinoma: recurrence ?'s

    I am so happy for you!

    Now that you say it, they definitely should call to tell you that the tests were clear.

    Why don't they just leave you a freaking voice mail! Especially if it's good news.

    Anyway, I am so glad you are healthy and I plan to join you in your full AIS recovery!

     
    Old 02-18-2009, 02:10 PM   #7
    zoe96
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    Re: Cervical Adenocarcinoma: recurrence ?'s

    Hi there --Wow, that's fantastic news. I am thrilled for you!!

    Thanks for the good wishes...I will take all I can get. I hope to add myself to the success stories here, with good test results and a clean bill of health!!

     
    Old 02-18-2009, 08:37 PM   #8
    JessicainCanada
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    Re: Cervical Adenocarcinoma: recurrence ?'s

    Great news!!!!! I'm so happy for you!.....

    I'd be having a rye and coke right about now

     
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