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Please, please help. Smear says ?Glandular neoplasia endocervical type

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lulululu
Please, please help. Smear says ?Glandular neoplasia endocervical type

The title says it all. Here is my story:

I had CIN2-3 in 2015 removed with LLETZ.

After this LLETZ I had clear smears, negative HPV, clear colpo's, punch biopsies, and ECC's.

Then summer 2017 = pap war borderline atypical glandular cells - AGC. HPV negative, ECC negative, punch biopsies negative, and normal colposcopy at this time. I then had a NETZ and D&C to make sure all was OK - and it was OK, no dysplasia.

After this I had clear ECC's, clear punch biopsies, HPV-negative, clear colposcopies.

In may 2019, I had 1 episode of odd bleeding, and had again clear punch biopsies, clear ECC and clear colposcopy. I was offered a surgery however, mostly for my peace of mind, where the transformation zone and all the way up the endocervix was resected. This material was benign.

Now december 2019 I had a HPV negative test again - but with the result of "?glandular neoplasia endocervical type"

I am at a loss for words, because I had convinces myself everything was good after the surgery this summer, where all material was benign.

My gynecologist wants the slides to be reviewed again by a senior pathologist on monday, as he believes they may interpret the cells from the uterus as abnormal endocervical cells. My cervix is quite short now, and scarred, and I was on my period. All this things might make the slides tricky. He thinks, with the benign biopsies from the surgery only 5 months ago, that it is very unlikely to be anything amiss.

If the senior pathologist on monday is even a little unsure of the slides, I will have surgery tuesday evening - another NETZ and D&C I think.

I am in tears and don't know how to cope this weekend.

I may get surgery on tuesday which sucks - 4th surgery for me. If they deem surgery unnecessary then what? I am so tired of the anxiety hovering over me. I am exploring getting a trachelectomy.

Let me know your wise thoughts please.

Thanks in advance.

Best regards,
Louise

noodlesdoodles

Hi Louise

What a saga you have had - with each time/ biopsy/ treatment bringing worry and anxiety. No wonder you are feeling this way about the whole thing and you have had a lot to deal with so can totally appreciate your upset about more surgery. On the plus side your Dr sounds positive, they will check it out and get the top bod to look at it and then advise. 

I know it will feel like forever this weekend until Monday ( the waiting always sucks doesn’t it) but try and be kind or busy or whatever you need to do to get through it in the best way for you. Take heart that the Gynae thinks there is unlikely to be anything amiss if you can ( easier said than done I know).

Big hugs to you and fingers crossed for Monday xxx

 

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema
lulululu

Thank you so much, Noodledoodle.

I try to focus on what my gyno said - after he spoke with the pathologist - and not what I'm reading about statitics for that pap smear result. I am really relieved he managed to get her on the phone friday at least, I just wished it had been possible to also look at the slides that day. 

It doesn't help that I, after the resection in june, had a lot of spotting between periods. Makes me scared. But I was told this could be because of the surgery and new hormonal IUD. 

I wish everyone worked on weekends, so I could get answers sooner. :)

 

lulululu

Okay so since my first post, the following has happened:

- review on the SMEAR said "could be reactive, recommend new smear in 3 months, if still atypical, consider ECC"

- I then had colposcopy, punch biopsies and ECC at my regular gyn which came back yesterday finally after almost 2 weeks - no dysplasia or malignancy, but cervical endometriosis or tubar metaplasia in the glands. This is benign processes but gives the type of pap smear results, that I got. Is due to surgeries on the cervix (makes sense). No morphologic or immune-stain sign of AIS.

- I then monday had - in spite of the recommendation on pap but for my own sanity's sake - a NETZ, endocervical ECC and endometrial biopsy. The NETZ measured 2 cm in depth (thats basically the length of my entire remaining cervix). It was quite wide as well (2.5*2.8 cm).

Result: Normal ECC and endometrial biopsy. NETZ showed reactive atypia most likely tubar metaplasia. It is getting confirmed via immuno-staining. 

BUT also - weirdly - focal CIN1. I am HPV negative and have been for a long time (4 years or so).

I am relieved there was no CGIN/AIS in the cone. 

I am surprised about the bit of CIN1, but it doesn't worry me as it's squamous and low grade, and I am HPV-negative. (apparently CIN1 can be HPV-neg and much more often is, compared to CIN3+ and HPV-neg CIN1 has a very small chance of progressing).

As I had my cervix resected in june this year, my doc seems to think it may be a reaction to that and may not be true dysplasia.

ANYWAY 

My gyn suggesting following up with colposcopies and pap smears, but my problem is: apparently my cervix generates these reactive processes, which can look like glandular atypia on pap smears. 

These past two weeks have been so, so hard for me. I don't even feel relief now, my body is completely tense and stressed still.

So I persuaded him to a simple trachelectomy in two months time - we have to wait for the healing to see if there even is any tissue to remove - he doesn't think much is left as it is.

I almost made my doctor swear multiple times, that nothing bad could be in my cervix now. 

I guess I should be relieved right? Right?I think I may be still in chock. My worst fear was that something has been missed all along or something.

I don't know why, but I don't feel relieved yet. 

The last two weeks were hard. I had to travel for the NETZ and I did it by myself which sucked. I had to travel today for the results, alone again, it sucked.

This is probably a long post now. I'd love to hear your thoughts about everything.

Thanks to you all.

Best regards,
Louise

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