I've been reading through the forums and so encouraged to see how helpful everyone is to one another.
I had a follow up to my colposcopy appointment today, and was told by my Gyn that the results found adenocarcinoma in situ. For course of treatment, she recommended a cold knife cone procedure, review results, and then since I am done having children (I am 38 years old), a hysterectomy.
When I read online on the Cancer.org site and other pages, most courses of treatment recommend a simple hysterectomy if adenocarcinoma is found and the patient is done having children. This gyn is new to me and I only started seeing her because of my abnormal pap, but I don't get a good feeling about her. I feel like the cold knife cone procedure might be unneccessary? Maybe I'm just a bit scared, and the fact that I don't care for the doctor makes me question her treatment plan, so I wanted to hear your experiences in treatment plans.
I know these are questions that i should've asked her during the appointment, but it wasn't until getting home to research online a bit more that I feel off on the course of treatment.
Thanks in advance for any insight!
I also have high grade CGIN/AIS & am due to have a hysterectomy (keeping ovaries), now scheduled for May due to cancellation. My plan was the recommendation of multi disciplinary team meeting, following a smear after LLETZ procedure that still showed glandular abnormalities. Has your case been discussed like this?
I am 46 & having no more children. I was also told I could have another LLETZ biopsy, but the preference was for hysterectomy as it removes the risks of lesions that may be sitting in places that aren't accessable on colposcopy or smear & might cause problems in future.
I was given the options & lots of time to talk through & made to feel like I had some input, so I'm sorry to hear your Dr isn't making you feel confident as think this is essential. Is there a nurse specialist available you could talk to? Hopefully some of the other members with more experience than me will post advice as well. The glandular abnormalities seem to be more unusual so their input would be great!
Unfortunately, you have to go through the cold knife cone (CKC). I too was diagnosed with AIS and said, "sure, let's just go to hysterectomy". My gyn/onc told me that the biopsy had to be done to determine if the hysterectomy would be simple or radical or if they found more cancer than they thought originally the chemo/radiation route.
My results just came back and they did find a tumor and I no longer have AIS (precancer) but Adenocarcinoma (no stage yet). I will now have to go for an MRI, blood work and various other tests to determine what treatment I will have. If I my doctor had just preformed a simple hyster, some of the disease would likely be missed. The CKC is easy, I had it under conscious sediation and was lucky to have little to no bleeding and little cramping.
Good luck and please update us with your progress
Thank you Katie H and Cdngrrl for your helpful responses. Kate, unfortunately I don't feel like I was given much opportunity to wrap my head around treatment plans, and am looking at changing doctors.
Cdngrrl, what you say makes sense, and after I had posted I was able to find a forum posting on another website that did indicate the doctor would want to see what type of hysterectomy needed to be done.
It's a rocky road and I haven't found all the treatment by everyone I've dealt with great (some have been down right awful) but my gyn/oncologist is very kind and very knowledgeable and I am putting my hope and faith in him. I see him tomorrow and I hope things will start moving now. I've been dealing with all of this since mid January.
I am very newly diagosed with AIS Unknown Origin. It has mastasticized to my cervix. I have an MRI for next week. I am pretty nervous. I didn’t have many symptoms. I am in my early 40’s, single...terrified. Trying to keep a brave face, but really am scared. I’m not too worried about the hysterectomy, I’m more worried about the fact that it has spread. I have some good friends and a family that will try to be supportive but I find that I am reassuring them more than I am finding solace in their strength. Man, this is hard.
Words of wisdom?
I am/was an adenocarcinoma girl too. I had the cone biopsy followed by the simple hysterectomy, keeping my ovaries. Two years ago now and it's amazing how much you forget, but my doctor also had a nose around my womb while doing the cone to check tht it hadn't spread that far. I think it's all to do with gathering information so that you can be staged correctly thereby getting the correct treatment.
The cone was no big deal, athough I'm in the US and they put you under for such stuff. Don't remember a thing and no pain or bleeding afterwards. Hysterectomy was OK too, so don't worry.
I do think it's important to like your doctor and to trust her. If you don't like yours, move. There are so many horror stories of mean as shit doctors, so go with your gut and find one you like.