Hi all. I am new to the boards and hope I am not repeating something already posted. I had a pap about a month ago that came back abnormal. Last Monday I had a colposcopy. The nurse practitioner called me this afternoon. Of the three areas biopsied, two show severe dysplasia and one shows adenocarcinoma in situ. She called the results "serious" but stated it was not cancer and that everything is still precancerous. She also said that if not for the adenocarcinoma in situ, she would have simply recommended a LEEP and 3 month follow up pap.
Instead, I am meeting with a doctor to discuss the cone biopsy she has recommended. She indicated that this will "treat" the adenocarcinoma. She clarified that the colposcopy only showed in situ but there was an "outside" chance that it could be something more. She said I would discuss options with the doctor, but if it was more than in situ, a hysterectomy would likely be the next step.
Frankly, I am terrified. I have never been sick a day in my life, much less had outpatient surgery or possibly have cancer. I have so many questions:
1. I do not have cancer, correct? In situ is "stage 0" but the cone biopsy could show that I do have cancer?? Is that common? I have a history of abnormal paps and a 2008 colposcopy just showed mild dysplasia.
2. How painful is a cone biopsy? How long afterwards until I can resume normal activities - work, exercising, sex, etc?
3. I am (understandably) scared. I am 32 years old and in a serious relationship. I am not sure whether I 100% want to have children, but I think I'd like the option. Should I be considering a hyst?
4. Finally (for now - SORRY), will the cone biopsy "treat" the in situ, i.e., will it remove the questionable cells presuming it is not worse than in situ? Or is this just another step that leads to the inevitable hyst?
I have read a lot of information on the boards and on the internet and I am afraid that I am scaring myself. It seems like a lot of women on these boards have had initial diagnoses of in situ but have actually had invasive cancer. I am not sure whether it is because it is common or because people are less likely to share when results are normal????
Any advice is appreciated. I have never been so scared.
The following user gives a hug of support to carolinagirl24: jebie23 (12-15-2010)
hi, i have had a leep cone biopsy for cin 111, which is sometimes called AIS, i had this done in February this year, i had pm, on an afternoon off, but was fine for work the next day, had bleeding for a week,approx, and told to abstain from sexual intercourse for 6 weeks. It didnt hurt but was uncomfortable, and took approx 30 minutes as also had biopsies taken. |When the doctor gives you the results from your cone procedure, make sure you ask if the margins are clear****** I had AGCUS or AGUS (glandular) cells which are more uncommon than ASCUS. So is important to ask which cells you have*******, glandular or squamous. You will be called back within 6 months after your cone for a check-up, to see how it is healing and repeat smear (s) one maybe to sweep the endocervical canal - very important if you have AGCUS, i have had this treatment and two abnormal smears since, the first one they just normally watch and wait but on second you are called back to colposcopy, which I have now on Monday, so am nervous. They found Cin III in a biopsy and Cin I in my leep/cone procedure. There is a high rate of recurrance but as long as you have all your check-ups you will catch pre-cancer cells. Big hugs and let me know the outcome. x
Last edited by miaverline; 10-30-2010 at 08:49 AM.
sorry just realised you said adenocarcinoma, and i really wouldnt go for the hysterectomy if they advise treating with cone / leep / cryo as you are only 32 and may wish to have children and incase you have to have HRT but they will advise you of your options when you get your results x
Thank you so much for your insight! It is definitely a scary thing to go through. I called my doctor's office the day after my diagnosis and spoke with the world's kindest nurse. She explained that I should not have to spend my weekend worrying and got me a face-to-face appointment with an ob-gyn yesterday at 4:30. The doctor said it was "serious" but the colposcopy showed in situ with no evidence of invasion. She explained that the cone still had to be done (i) to remove the bad cells and (ii) to confirm the colposcopy was correct and that there was no invasion. She also said that the biopsy would be large to make sure they got everything.
I am still really worried that it is invasive cancer, but I do feel somewhat better and feel like I am in good hands. The doctor is requesting a surgery room for Wednesday (she couldn't get the request in until after 5 yesterday so I won't know for sure until Monday) and said to plan on having the cone done sometime that day, with the results due 3-4 days later. She indicated that I shouldn't work on Wednesday but "may" be able to work Thursday and Friday. I am able to work from home so I am just going to do that in case of bleeding etc.
I also had carcinoma in situ in my 20's. I also had a colposcopy and then a biopsy which resulted in the cone biopsy procedure. Waiting for the results to see if it was invasive was hard, but there is no way around that. I just worked on breathing techniques, eating really well, getting fresh air, being thankful, reading, and things like that to distract the mind in a positive way. Hope for the best for you.
If I were you if at all possible I would go ahead and take Thursday and Friday off and get healthy nutrient dense meals ready that are easy for you to eat for the days after surgery. I bled for weeks after the cone. The pain was worse the days right after and also the blood. Some doctors may tell you this isn't a big deal and compared to some other surgeries this is very true but this is actual surgery in which you have to be put under and you will probably have to take pain meds which effect people in different ways. I would take it easy and recover without the demands of work for a bit.
Last edited by seavegetables; 10-30-2010 at 05:08 PM.
well went back to colposcopy clinic and am having cone under GA, unless biopsies taken today show worse diagnosis, they have picked up the glandular cells again, with dysplasia. I had 5 biopsies taken today, one was quite uncomfortable as was taken up high in ECC, and ob gyn consultant said difficult to do. he saw cells which looked like the glandular dysplasia in ECC, but said now they will have a meeting and a few consultants will go through my whole file, back to previous leep in 1998, old smear results etc. and depending on biopsy results will decide where to go from here, but at the least will have cone under GA, which will go to the neck of the womb and may cause me to have early pregnancies if i get pregnant again. He said they need to find these cells and get rid of them, and they were more difficult to treat in the endocervical canal. I also asked him if the glandular cells were travelling down from my uterus/womb, and he said not likely, as my periods were normal, and should be just higher up in the canal, but stressed if I have one more abnormal smear, if they go ahead with this last chance cone, I will need a hysterectomy. I really dont want a hysterectomy which I told him, but its looking iffy now, so little upset about that. Let me know Caroline how yours goes, best of luck, will be thinking of you, I am having mine before christmas
Mia, I am so sorry to hear that, but it sounds like your doctor is being appropriately aggressive in the treatment. I will definitely think about you come December.
My doctor's office confirmed my CKC for 7 a.m. on Wednesday. I am so ready to get this over with but I am also scared - I have never been put under for surgery in my life. I am worried about the after effects and nausea??? The doctor said it would be "light" anesethia and I wouldn't be groggy for days.
can you opt for cryosurgery?
it's pain free, non invasive, etc....
I had the same thing you did, had cryosurgery, and haven't had a problem since.....they freeze the cells on the surface of your cervix, and they naturally sluff off leaving healthy cells
They do things much faster in America than UK, will need to wait at least 4 weeks for my results, Rosequartz with me as they are glandular cells they need to do cone as cannot see where they all are they dont know where cells are until biopsy, thats why cryo not good enough, Caroline, please let me know how your surgery went and after effects etc. as I dont know what after effects are, I know a colleague who has had it done and she said she just felt a little 'out of it' and had one day off work only but had no cramping and not much bleeding. Are you having a local or general anaesthetic, if local they dont take as much as when you have a general, had local surgery done and even though little uncomfortable they injected anaesthetic and this is a little uncomfortable but didnt feel hardly anything after that. Am a little worried that they will change their minds and do hysterectomy depending on results of biopsies, but then probably be worried after cone and one abnormal smear, so waiting game again. Only thing I have piece of mind over is they have found the glandular problem before it can get worse. My fingers will be crossed for you on Wednesday. x
They are definitely doing general, I think by "light" my doctor meant that I wouldn't have tube down throat, etc. like I would for major surgery and that I wouldn't be in recovery room all day. A friend of mine had a breast biopsy (all clear!!) a couple of months ago and I believe she had "light" anestethia - she was groggy and out of it but woke up soon after surgery, sat in recovery room for hour or so, then got dressed and went home and was fine. I had twilight anestethia years ago when I had my wisdom teeth taken out and I do not remember a thing except having trouble walking out into the waiting room and completely freaking out the teenager who was waiting to get his wisdom teeth out!
Rosequartz - I also need the CKC because of the glandular cells which apparently are tricky little suckers.
Mia - I plan on posting a full summary of my experience plus results good or bad!
The following user gives a hug of support to carolinagirl24: miaverline (11-01-2010)
Thank you, that would really help xxx Am bit shell shocked after today, was thinking the worst after being on here but when went in thought ah, will be ok, dont worry, I will post as soon as I know any more or if I have date earlier. Am fine after procedures today, just feel a little tender, took 2 paracetamol as soon as i came out of colp. I just felt tired probably from all stress of the day. Will be sending wishfull thoughts, its 11.15 pm here now, so betta get to bed lol, been long day. There are some stories on here under CKC which are varied, think it depends on what anaesthetic you have and how much they take away. Will speak soon x
Last edited by miaverline; 11-01-2010 at 05:18 PM.
hi my daughter has had irregular bleeding for almost 3 yrs now the hospital wouldnt do anything to help her so we were refered to a different one they did a smear even though shes only 19 the result came back 7 days later abnormal cells borderline , in august she had a hysteroscopy were they took two biopsy one from lining of womb , one from cervix , they also cauterised an erosion her biopsys came back abnormal too cin 2 and 3 she had a colposcopy last month and didnt really show anything to what the biopsy is showing the hospital are only repeating the colposcopy in april 2011 and her smear feb 2011, to me this is a worry as i hav heard of adenocarcinoma soz bout spelling i am worried that the colopscopy isnt showing much coz the abnormality lies higher in the cervical canal, the doc that did the colposcopy wanted to wait to see if it breaks threw the cervix shes in a lot of pain and bleeds still in between and after sex im really worried as i feel the hospital are not taking it seriously has anyone else had probs like this i wouldnt like it be adenocarcinoma and we dont know
hope everything turns out well for you hun its such a worry i feel so sick for my daughter xxx
Just wanted to give an update for Mia and others following this thread! I had my CKC done this morning. From the time I left my house to getting home (I live about 15 minutes away from hospital), was just over five hours.
The first two hours was just a lot of paper work and questions with the intake nurse, getting into hospital gown, etc. I had to give a urine sample to confirm I wasn't pregnant and they took some blood. Then I met with the nurse-anethetist who hooked me up to an IV of clear liquids - I was worried - I hate needles - but she numbed the area first and I barely felt it.
Next, the anestethologist stopped by and explained what he was going to give me the following meds via IV: anti-emetic for post-surgery nausea, a painkiller which was described as a liquid ibuprofen and then versed (what the nurse called her "feel good meds"). The doctor said it was unlikely that I would be nauseous from the surgery but he liked to treat for it before surgery.
Then my doctor came in and we went over post-CKC care and she answered my final questions. The nurse then gave me the versed (the "feel good" meds). Anything after that is a blur until I woke up! I remember watching her put it in my IV and then five secs later saying "WHOA". My boyfriend was still there at that point and he told me that I just kept laughing.
Next I apparently got the real anesthesia and then had surgery - I don't even remember being wheeled into the OR!! When I woke up, I spoke with the nurses and they monitored my vitals for about 15 minutes. I didn't feel sick at all and asked to go to the post-recovery room. They wheeled me in there and I sat in a reclining chair and sipped on sprite. My boyfriend was allowed in at that point, too. I sat for about 30 minutes and then felt good enough to go home. The nurse made me go to the bathroom first because she wanted to check for excessive bleeding. After that I got dressed and went home!!
I still don't have much pain - doctor says I will need ibuprofen for a couple of days but that is it. Since there is a risk of bleeding, the doctor told me not to move much for the remainder of the day (I have some bleeding now, but no worse than a period). I napped when I got home, then my boyfriend brought me soup. I am still sitting in bed (with my dog curled up next to me!) but honestly I feel fine - I may even do a little work later. I could probably go back to work tomorrow, but since I am likely to continue to bleed and have to wear pads (blah) I am staying home. I am lucky to have a job where I can do that - I don't even have to take days off!
All in all, this has NOT been a bad experience - the most painful part was getting blood drawn! The doctors and nurses were SO kind to me.
I find out my results Monday or Tuesday and will let everyone know. I just wanted to put this story out there if anyone else is scheduled for a CKC. It definitely sounds worse than it is (based on my experience).
The Following User Says Thank You to carolinagirl24 For This Useful Post: miaverline (11-03-2010)
That is so reassuring ! I hope my experience is just as good as that, this has put my mind at ease, USA are a lot quicker we have to wait weeks for results of biopsies, but have been told will have this done before Christmas. What questions did you ask the doctor, the only thing that worries me is during colpo Dr showed me red spots in my ECC, which were highly magnified, but were several, and this was where he biopsied. I am so happy for you, a little jealous that yours is over and that results again will be through for you in days rather than weeks. I may go back to work the next day if feeling fine to work, although they are lovely in work and could have day off if sore. Am so pleased you had a 'good' experience. <<< big hugs>>>> x