Hi there
I was diagnosed with AIS and focal adencarcinoma of the cervix.
one doc says invasive but still local and thought hysterectomy is the way to go, the other says non invasive just AIS
and wants to wait and see… I am 39 and he says its too early to go ahead with hysterectomy eve though I told him i have no plan on having children
The cone biopsy said negative margins and that AIS was excised.
I really dont know what to think, first I am confused by the “disagreement” of my biopsy readings, second I don’t really know which approach to take…
like someone else mentioned here, i keep feeling like I am over reacting and its nothing, but than I get stressed out a bit of the thought that have cancer (?)
Anyone had same situation?
I also tried finding more info about the implications of a hysterectomy and seem like some of the things online are not objective but reflect someones opinion about it and put emphasize on things other places really dont …
So glad I found this forum, I felt like I have a million questions and no one to ask…
I'm your girl.
Just wrote you a long, beautiful post and nuked it by mistake. Here goes again:
I too was diagnosed AIS, stage 1a1. Mine was microinvasive and 0.4mm. My doctor described it as though all the cancerous cells were massing behind a wall and one had got through. They are not causing trouble behind the wall, but once they get through it's cancer. [I'm going to say right now that I'm not a doctor and may have not totally grasped what she said, but it's a starting point for you and your own discussions. Hopefully.]
I had a cone biopsy which removed the offending tumour. Clear margins. She also did a D and C of my uterus and took further samples higher up the cervix - all clear. Next step was a hysterectomy. No question whatsoever.(Had I been younger we would have discussed a trachy, but no question that Mr. Cervix was gone.) I asked her why, given the biopsy had taken out the tumour, I needed further treatment. Here's why.
Glandular based CC, which is the adenocarcinoma crowd, can create skip lesions. I think this is also referred to as being multi-focal ie it may several different locations and is not concentrated in one spot. These skip lesions, AKA other pissy tumours, can hide in other parts of the cervix. What's more, they can be surrounded by clear cells, so unless your biopsy hits exactly where this tumour is, you will never know it's there. What a total bastard. I don't know whether any other tumours would show on a PET scan - never discussed it.
So, I had a simple hysterectomy - kept ovaries, kept all vagina - and that was that. Biopsies of the cervix found another tumour, only this one was 2mm x 5mm, waaay bigger than the one that we already knew about (0.4mm) which had been removed with the original procedure.
So, you can see that from my own experience, I am totally biased towards some kind of cervix removal. If you keep your ovaries you will not enter menopause ( I don't think, but not sure) or if you do the trachy , you can have kids later if you want.
Wait and see? F**k that. Sorry, but that wouldn't work for me.
Have to run, but happy to answer more questions/ramble on.
t x
Thank you so much for your reply!
I think the worst part with this whole thing is not being sure you understand whats really going on and feeling like there is no one to ask, you were extremely helpful!
I think my GYN is with you on the "F**k that" note, thats why she wants me to get a second opinion
from what I see so far the unlikely seem to likely happen , as I never had an abnormal pap till the very last one before the colpo, the colpo looked good, punch biopsy did not show anything abnormal, only the biopsy of the way up there stuff she scraped showed CIN with glandular involvement, and as much as my GYN said its very unlikely, they did find more than the CIN III in the cone biopsy... it is actually quite possible that there is more stuff going on which will be missed because of the adenocarcinoma thing
If I can ask you something about the hysterectomy, if you will be comfortable answering that off course... I did google (unfortunately...)the reprocations/side affects of Hysterectomy I think I landed on something a bit extreme that portray it as the end of my sexual life, and a whole line of other quite discouraging things... I know that in reality there are or may be some issues but I dont know where to search to get a real honest educated answer about this, any suggestions? did you experiance a lot of issues ?
This endless waiting is really not my favorite...
Thanks again!
Well I know what you mean about luck. I never had an abnormal smear or any symptoms either. I'd definitely get a second opinion and get some numbers. If you have precancerous glandular cells then there is a real risk that they will become cancer, so how big is the risk? 5%? 95%? Wait and see how long before they turn into a full blown tumour? I think it is totally different if it's only CIN1 or CIN2 where there is a good chance that they sort themselves out. No one has ever suggested to me that glandular cells sort themselves out. Ask your doctors and make sure they answer every last question.
Now, as to your love life... I was already post menopausal when I had my hysterectomy - I'm way older than you - so I would ask this very important question on the post treatment board. There are tons of young ladies over there who have had hysterectomies/trachs and they can give you full and frank info. I think a lot of doctors don't address the impact of treatments on our sex lives which is a mistake. Nip over to the other board. I'm sure those who are happy to answer questions will jump in to reassure you.
Waiting sucks.
good luck
t x
Thank you so much!
Hi kd :-)
Welcome to the forum :-) You seem to have landed on your feet with our Teresa :-) I just wanted to add that from now on, keep right away from Google and ask ALL your questions on this forum. There's loads of us here and we're all really happy to help with anything and everything we can :-)
Be lucky :-)
Tivoli
Hi Tivoli
Thank you so much Im so greatful I found this forum! knowing that I have who to ask, getting all this info is somewhat giving me a feeling that I'm more in control... Thanks for evrything you are doing here!
You're a god send!!
