Hi
I am 36 yr old and have been newly diagnosed with Adenocarcinoma in situ.... but not sure if it is in situ as i only got results from colpo and punching biopsies, and am scheduled for laser cone on July 10 to determine if there is any invasive.
I was told about Adenocarcinoma on Tuesday and had never heard of the name before. I wad told right away when to have a cone biopsy but no MRI or CT scheduled before surgery.
Is it normal to have no further analysis to see whether i have cancer anywhere else and go right into laser cone?
I am scared as i read many blogs of who had Adenocarcinoma and past away.... and upset somehow as at annual health checkup in April i was told by a gynecologist there would be nothing to worry about and when the smear result came back with LSIL IIIA moderate dysplasia, the clinic took 1 month to prepare a referral to get a further exam done. Then when i finally could go do colpo and biopsies, i got the result that i have Adenocarcinoma in situ.... very worried as i was told it is rare to find Adenocarcinoma with biopsies test as they are unlikely to be near surface, meaning there is likely something more way up.
as i found this forum where various ladies have gone through Adenocarcinoma, it would be great if any of the ladies can give me advice on how to be positive when waiting for conization, and if it is nornal to not have any other exam before the conization (and just wait for conizationa and its result which is like a month long wait in total).
Thank you
Hi Masako
I'm an adenocarcinoma girl too and just like you I had never heard of that time of cervical cancer either. I always thought there was only one type and as long as I went for smears I would be fine but no I was wrong all my smears had been normal until the last one.
I had to have an mri to find out my staging but mine was full blown cancer and not in situ so perhaps that's why it's different.
Not everyone who has adenocarcinoma dies. I just got the all clear 2 weeks ago. Our type is just harder to pick up on a smear cause it starts further up but it is treated exactly the same as other cervical cancers.
If you are concerned about not having a scan maybe talk to your gyne doctor about your concerns maybe they can send you for one.
Any other questions please ask
Hello toughcookie,
Thank you so much for sharing your case. Your story helps a lot when all i heard was Adenocarcinoma is a rare type and no one i know knew about this cancer.
I am sorry you had to go through Adenocarcinoma, but happy to hear you could keep your ovaries and now you got it all cleared.
Today i brought up the scanning issue to my doctor and he said in any case the first step is to do the conization, then if there is a need (like margin not clear, invasive)for the scanning. I know it is logical because they are assuming mine is in early stage and won't show up anyway, and i made myself understand i just need to wait and see.
Since that hospital is a public one, a city hospital, and not specialized for tumors or advanced medical technology, they will follow the basic guideline and perform what is minimumly required (no option for surgery method either). So i have decided to find another hospital after my conization to get hyst simple or radical depending on the lab analysis. My doctor told me if i need radical hyst, he'll probably need to write a referral and send me to another hospital anyway.
For now, i'll try to stay calm and not to think about the worst scenario. Having no family cancer history, it freaked me out to hear i have a cancer and especially that Adenocarcinoma can spread quicker (and can skip)than squamous one. But i was told even with skip lesion it is hard to think this cancer advances in a few months.
I don't know in uk, but i was told waiting for 3 to 5 months for surgery is pretty normal in Japan (even for cone but for hyst definitely at least 3months as it is likely to take 4-6 hrs)
Is the waiting list like that long in UK or in other developed countries?
Hi, I also have Adenocarcinoma. I'm staged at 2b and I've had a radical hysterectomy, with both ovaries removed. I also had lymph node removal too. It's since been discovered that I have lymph node involvement and I am awaiting a PET scan next week. I think I'm always going to be worried that the cancer will return to other parts of my body due to this type of cancer. It's like living with a ticking time bomb! However, I'm not going to let this ruin my life either. i don't think it's properly sunk in that I have cancer still. I seem to hit one hurdle and then have to get over another. Xxxxx
I just had conization and the doctor told me the abnormsl part wad higher up and larger thsn foreseen... very worried how and where and when will my definitive surgery performed or is it already involving other parts???
It's a torture to wait having nothing i can do.
Hi all. I had adenocarcinoma, 1b1 tumour with a lymph node involved. My impression is that adenocarcinoma is more likely to 'hide' during smears and so be picked up later than squamous cell (although that's not always the case). There is also some research suggesting it spreads to lymph nodes at an earlier stage than squamous, but again this isn't always the case. It is treated in the same way and is just as treatable (and curable) as squamous cell, so please don't panic. My consultant told me adenocarcinoma is no longer the 'rare' one, as smear testing has reduced significantly the number of squamous cases, meaning they now see roughly a 50/50 split of types.
Masako - I'm sorry you now have to wait to hear about further treatment. Waiting for answers is the worst, but they are investigating and will come up with a plan to get rid of this once and for all. Stay away from Google as a lot of the info is out of date and terrifying. Just ask away on here.
Anne xx
Hi there i has adenocarcinoma in situ at the beginning of the year and I too was beside myself with worry. I went for colposcopy and they thought it was just CIN 3 and so scheduled me for laser treatment but then the punch biopsy taken at the same time came back with AIS. I was terrified that there was more up there that I didn't know about. the cone biopsy was done and that came back with one clear margin and unknown margin on the other side but no cancerous cells found, just the AIS. I then opted for a hysterectomy with ovaries kept and it was the best thing I could have done. ive had my kids and just didn't want to keep worrying about what else was hiding. the gyn onc did say that I could have just had regular Pap smears but for me it was a no brainer as I didn't want to be on birth control anyway and so no reason to delay hyster. My hyster came back as no more AIS. it was still one of the toughest times of my life as I had myself dead and buried but now six months on I've kind of started to forget about it. I totally understand what you are going through as I was exactly the same X
annelouise- Thank you for your advice on googling.
Sarah - it seems to me mine will not be only in situ stage, though I really hope it is still in situ. What my doctor told me implies there is more than that.
right after the laser cone, the doctor said he had to take out a larger piece of cone as the white color changed area was clearly larger than expected. This makes me very worry as this hospital is not willing to do any scanning MRI or CT to help determine my cancer stage but giving me this comment that in the base case scenario I will go through hyste but probably more. and saying at the next appointment, he will have a lot to tell me -.-
as I am waiting for the lab result, I cannot even go to other hospitals with better knowledge and skill for second opinion. And my concern is that... adenocarcinoma is already in an advanced stage as I have been having pelvic pain for a while.
Hi Masako
I was newly diagnosed with Adenocarcinoma in situ along with HSIL by colp/punch biopsy, I am right now waiting for my cone cold knife surgery, I am also very anxious about what will be the worst case senarino since my doctors said the colp biopsy is not definite diagose. Finger crossed for us!
Rebecca
