I am new to this site & after reading many of the forums for a few days I have decided to reach out with my questions.
I am from the US so I know some of the terms, and processes might be different from the UK but I feel sort of lost.
I am 31 and have 3 daughters. I had a pap/smear Dec 13th. I could tell at the appt something was off because they scheduled a follow up before I left… In the past I have always just received a post card saying congrats your pap was clear. So I was scheduled to return Jan 10th.
But the office called me on Dec 22nd and said they were referring me to another doctor. On Dec 27th I went to the appt clueless! I thought I was going in to discuss results. I was told my pap was abnormal with a high grade lesion/dyskaryosis. He did a colposcopy, 2 biopsies and a swipe inside the cervical canal. He had said from there I would probably have LEEP/LLETZ done depending on results.
On Jan 14th I went back and was told they found Adenocarinoma, and he wanted to do an endometrial biopsy (I think this alternative instead of D&C). I did that day in the office, was called 2 days later for an ultrasound and now I am waiting. He said results from edometrial biopsy & ultrasound will go to another doctor as well.
**** How the doctor explained adenocarcinoma to me was that is was more rare, and reason to believe the cells were within in the cervical canal and/or uterus.
My mind is racing because at the appt I didn’t know what to ask and now that I have looked up adenocarcinoma I have so many questions. From reading other posts I feel you like all the ladies were giving much more information. Part of me feels like he doesn’t want to alarm me so he is giving me the bare minimum until we know more.
My biggest question is… if it was in situ would he have already known this? Would he have said in situ at my appt? Is this the difference between pre cancerous and cancer?
Any advice or knowledge welcomed. This site is amazing! I have read and learned a lot.
Sorry for your diagnosis but glad you have found us. I was an adenocarcinoma girl! :-) OK, so the outside of the cervix is covered with 'squamous' cells, which are more like skin and your lungs, but further up inside the cervical canal the cells are different and are called 'non-squamous'. Part way up the canal where the cells change from one type to the other is called the 'transition zone'.
About 80% of cervical cancer is in the squamous cells on the outer surface and easy to pick up in a pap smear. The remaining 20% of cervical cancer is in the non-squamous cells up inside the canal and is called adenocarcinoma. Because it's up inside the canal when it first develops it is not so easy to find with a pap smear. To the best of my understanding adenocarcinoma in situ is the tiniest amount it is possible to have, but therefore, the hardest to find. It is possible that your tumour is a little bit bigger but don't worry yourself about that just at the moment. You will have what seems like gazillions of tests to find out precisely where and how big your tumour is and then you will be offered a treatment plan tailored to suit your circumstances.
The most important thing for you to think about just at the moment is that this is a really curable cancer! My favourite line is 'as cancers go, this one is a pussy' :-)
Thank you Tivoli! That really made me laugh ❤. You explained it very well. And you are right, I am very glad this is curable. And thanking God I have already had my children. I am trying to get in the mind set that I will have more tests and more waiting but it will be ok.
I think I just needed to vent my emotions. Thank you!
Hi. I had the same diagnosis. I had a Lletz and a top hat treatment last July and my gyne felt he'd gotten rid of any of the nasty bits. I'm 37 and have finished my family so made the decision to have a hysterectomy (he recommended it too). I'm 3 weeks over it now and very happy with my decision. Didn't find surgery or recovery hard and my emotions are good. I haven't had any results or a follow up with the hospital yet.
Update.... I haven't been on here in a few weeks. My uteran biopsy was clear so that was good news. I had 2 Dr appts since then and today I had cold knife conization. I am already scheduled for a follow up in 2 weeks. My Dr says she will probably have a few options for my next step based on what they find. My husband and I talked, I want to be proactive so if a hysterectomy is recommended I am going to do it.
Hi I'm looking for some advice I was diagnosed 2 weeks ago with adenocarcinoma they found it when I had a loop diathermy done after 2 abnormal smear tests. They have said it's stage 1 as the biopsy they took had a 9mm adenocarcinoma with pre-cancerous cells to the edge of the sample. I've got my MRI on Friday. I'm absolutely terrified it's going to be somewhere else. When the biopsy was taken it had to be sent to another hospital for a 2nd opinion so my medical notes say 9mm complex adenocarcinoma. It's the word complex that scares me! I'm 35 have 2 boys 13 and 11 months. I'm getting married in August and my life just feels like it's falling apart. Last week I was a complete mess I got told that I had cancer basically over the phone on the Friday seen the doc on the Monday. I know adenocarcinoma isn't normally picked up at colposcopy and I know they have caught it early but it's this waiting about not knowing what's going to happen next is driving me crazy. I've been really trying to think positive and my mood has been alot better these last few days but it's so hard pretending everything is OK when it's not
Hi Sarah. Sorry only seeing your reply now. I was in hospital for 20 hours and recovery was fairly easy. I'm in Ireland and the set sign off for a hysterectomy is 4- 6 weeks so I took the 6 weeks off work. I could have probably went back to work sooner but didn't feel the need to rush back as I'd cover sorted in work.
My hysterectomy was keyhole so 3 tiny scars and my belly button....I was surprised at how small the incisions were. I'd 1 ovary left and I'm happy to report it seems to be working OK. Everything is back to normal now and I'm feeling good.
I hope you are doing better now. Mine was stage 0 and I opted for a hysterectomy so no further treatment needed. Here it's policy that results are sent to another hospital for a 2nd opinion.
I think complex is just a term they use. Is a loop simular to a top hat or a cone. My options were top hat then a cone or hysterectomy. I decided hysterectomy was the best choice for me and I'm happy with that decision.
I'm sorry you are having a scary time of it right now, but it will soon settle down once you know precisely what you are dealing with and how your doctors propose to cure you. If it helps at all I had stage 2b adenocarcinoma five years ago and was cured back then. These days I am as fit as a fiddle so try not to fear the worst, cancer is a scary word but you will be finished with it sooner than you imagine :-)
