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Endocervical Adenocarcinoma in situ - intense fear

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StrongGirl
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Endocervical Adenocarcinoma in situ - intense fear

Hi everyone. I’m a 41-year-old mom of 4 from the US. In 2015 testing revealed HPV-18 but no abnormal cells on the smear. I did have occasional very light bleeding after sex, but not every time. I also started to occasionally spot between periods. It was so light, I just attributed it to getting older.

All good in 2016 as HPV-18 had cleared. In 2017, HPV-18 back so on to colposcopy and biopsy. All normal. Still have occasional, light bleeding after sex and occasional spotting between periods. Gyn says my cervix is “friable” and bleeds very easily.

 Begin seeing gyn every 6 months for monitoring. All good but the HPV-18 has been there since 2017. I’ve had exocervical biopsies, an endocervical biopsy, and uterine biopsy. All normal. Present day. Still positive for HPV-18, so gyn says it’s time to do a LEEP to ensure we aren’t missing something higher up. First, had a colposcopy. This was the first time anything bad showed up - CIN1. I had the LEEP on 9/27/19. Diagnosis on 9/30/19: Endocervical Adenocarcinoma in situ extending to the resection margins. The report also said “No invasive malignancy.” Now I’m being referred to a gynonc for further workup and treatment. However, that appointment is not until October 15!  

I’m very scared. Shouldn’t we be moving faster? Is it a sign they aren’t overly worried? I don’t know how to interpret my test results either. It says BOTH “AIS spread to margins” AND “no invasive malignancy.” How can they say not invasive if the margins aren’t clear?

I’m also terrified that the HPV has been testing positive for 3-4 years. My mind goes to dark places such as it may have been there all this time and now it will be too late to treat and I will die. I’m not even sure I understand my diagnosis of AIS. 

Can anyone help a very scared girl answer some of these questions? Thanks in advance. It’s good to be among friends. 

 

 

HPV-18 positive 2015, 2017, 2018, 2019; 09/17/19 colposcopy- CIN1; 09/27/19 LEEP; 09/30/19 Endocervical adenocarcinoma in situ. LEEP margins not clear; 12/13/19 CKC scheduled;
Lotty9000

 Hi

Its a scary time and waiting is tough.

AIS is not cancer, as I believe it it is precancerous cells that are likely to turn malignant if left. They definitely need treating but they will not change much between now and 15th October. The unclear margins mean there is AIS present at the edges of the samples, so effectively there may still be abnormal cells present. I’m not sure if that makes sense?

Good luck xxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

nickinicki

Hi - I also have AIS and it is NOT cancer. Repeat - NOT CANCER. I had the same scare when you hear "carcinoma".

AIS just means that it affects the glandular cells higher up in the cervix, rather than the CIN variety that appear on the outside of the cervix. It seems that the treatment is the same for both, especially for those wanting to keep their fertility. Up until recently, many doctors seemed to have favoured a hysterectomy as the treatment, but now are favouring more conservative management. It still requires regular follow up though. If you're not concerned about fertility, you could also elect to have a hysterectomy.

I had a LEEP in Nov '18. They couldn't say for sure if they got all the cells due to the cautery on the edges. I had a follow up colp in March '19 which came back normal. I just had a second follow up a couple of weeks ago and I'm nervously awaiting the results, while also trying to stay fairly positive about my options. Honestly, the worst is just dealing with the stress/anxiety of tests and waiting but you have to tell yourself that it is NOT CANCER and that there are a variety of treatment options available (and you might not need any more than you've already had).

 

Sending positive thoughts your way!

2011: Abnormal pap, CIN1, no treatment normal annual paps Aug 2018: abnormal pap, AIS/CGIN Oct 2018: Colpsocopy Nov 2018: LEEP, no clear margins due to cautery March 2019: Repeat colposcopy and biopsies taken: all normal Oct 2019: 2nd follow up colposcopy: all normal. Negative for HPV! On 6 month follow ups for the foreseeable future...
StrongGirl
StrongGirl's picture

Hi NickiNicki. Thanks for your reply! I had a CIN1 finding on a colposcopy and that is what lead me to the LEEP. Unfortunately, I did not have clear margins and that Is when the AIS was found. I had always had normal cytology but had been testing HPV-18 positive several years in a row. I've had my kids and just want to get this done! I'm going crazy waiting and wondering if I'll be at a stage that requires chemotherapy and/or radiation, or worse--that I'll be stage 4. frown

HPV-18 positive 2015, 2017, 2018, 2019; 09/17/19 colposcopy- CIN1; 09/27/19 LEEP; 09/30/19 Endocervical adenocarcinoma in situ. LEEP margins not clear; 12/13/19 CKC scheduled;
nickinicki

Finally got my results back today after 4 weeks! Happy to report that all the tests came back normal -- no abnormalities found in the pap or the endocervical curettage. As well, the HPV test came back negative!! I started taking AHCC tablets a couple of months ago and wondering if that made the difference?? Anyway, I'm very relieved to have had a second follow up after the LEEP come back normal. I have to continue going every 6 months for the foreseeable future though. Sending you positive thoughts!

2011: Abnormal pap, CIN1, no treatment normal annual paps Aug 2018: abnormal pap, AIS/CGIN Oct 2018: Colpsocopy Nov 2018: LEEP, no clear margins due to cautery March 2019: Repeat colposcopy and biopsies taken: all normal Oct 2019: 2nd follow up colposcopy: all normal. Negative for HPV! On 6 month follow ups for the foreseeable future...
StrongGirl
StrongGirl's picture

NickiNicki that's great news! I'm so happy for you! You must feel so relieved!

HPV-18 positive 2015, 2017, 2018, 2019; 09/17/19 colposcopy- CIN1; 09/27/19 LEEP; 09/30/19 Endocervical adenocarcinoma in situ. LEEP margins not clear; 12/13/19 CKC scheduled;
Lotty9000

Great news Nickinicki 

xxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

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Cervical cancer