Hi everyone! I wasn't sure where to post this as I am new but I have been a silent reader of this forum for quite some time as I have been going through the proces of diagnosis for a while. (also im in the states & I know some of the terminology differs..)
In January 2017 they found abnormal cells in my pap & told me I had HPV, then scheduled a colpolscopy which came back negative for any precancerous cells. We kept giving me pap smear follow ups ever 4 months and in October of 2018 the pap came back with different results: moderate dysplasia. We opted to do another colposcopy which showed CINII & my doctor then decided he would do a LEEP (ILLETZ?..) with a cone biopsy. This happened December 21st and oh what a marvelous Christmas I had! I got the call last week that the cone biopsy had come back from pathology and my Gyno explained my situation was worrisome and reffered me to a OBGYN Oncologist who I am seeing today for further treatment.
Everywhere I've searched online I've seen very different treatments for Adenocarcinomas in Situ- from hysterectomy's to more cone biopsies. (My cone biopsy did NOT have clear margins) I know these types of tumors are less common. My question is- what is the usual course of treatment for this? Have you had the same diagnosis? I'm 26 and I havent had any children yet..
Hi there, I'm in the same boat as you - adenocarinoma without a (big enough) clear margin on the cone biopsy. I've been told I need to choose between a radical hysterectomy or internal and external radio. The risk with choosing the hysterectomy (which on its own has less side effects than radio) is that I might need radio afterwards if they still can't get a clear margin, or if it's reached the lymph nodes. It's a gamble.
I'm 34, and haven't had children. Initially the idea was the try and preserve my fertility, but once they got the results of the cone biopsy, that's no longer an option for me. I had some eggs extracted and my partner and I have six embryos on ice, so hopefully we can find a surrogate.
Hopefully you will be given an option to preseve your fertility! It's a whole lot to deal with losing that, plus the idea of having cancer so young. I feel for you. x
In my case I was diagnosed with AIS back at the end of October after a punch biopsy at my colposcopy. I then had my cone biopsy on December 19th, so I understand the fun Christmas aspect! I'm still waiting on my results as I am in Canada and they tend to be extremely delayed in their appointments. For whatever reason they do their results appointment with their follow-up on my healing. I'm due back to see my specialist on February 7th but I'm hoping to get a cancellation before this.
I just turned 29 and I also don't have children yet. I have seen two specialists during this process (since October) and they have both informed me that they only immediately recommend the hysterectomy to women who have finished having children. Otherwise, they do try to preserve fertility. I have also read a lot on the subject and I believe that recently they have shifted towards this perspective. I am currently receiving treatment at a hospital that also will perform a trachelectomy if necessary (fingers crossed it isn't). This may be something to inquire about if your specialist seems to think that another cone will not fully remove the cancerous cells.
Wishing you the best of luck in future appointments!
Hi all - I'm also in the same boat, diagnosed with AIS in August. I had a LEEP in November and thankfully got my results back before Christmas. No cancer, but they cannot confirm if there are clear margins due to the cauterization. I'm also in Canada and so I can relate to the insane waiting game when it comes to trying to schedule specialist appointments. My doctor even told me quite casually during the LEEP appointment that "up until recently the standard treatment in Ontario was to perform a hysterectomy for AIS". WHAT THE. Who says that??? Anyway, I got my family doctor involved and has been much more comforting than the specialist and seems fairly confident that I won't need another treatment, but who knows. She also said that they've been favouring conservative treatment for those wanting ot preserve fertility for at least the last 30 years, so I shouldn't worry. At this point, I have to do another colposcopy in March (4 months after the LEEP). I've been compulsive googling myself and it's not clear to me the success rate of conservative treatment for AIS (/CGIN for those in the UK). I'm trying to mentally prepare myself for the possibility of a second treatment if it's likely. I also don't have any children yet and want to preserve my fertility.
Sending you all positive thoughts! The waiting is the worst.
Hi, I had high grade CGIN and AIS. I also had HPV 16 & 18. I received two LLETZ procedures. The second returned three clear margins and one positive margin.
I was told a hysterectomy was on the cards, but I have no children and was not even entertaining the idea of a hysterectomy without exploring all other options.
I set about boosting my immune system through diet and supplements, and began acupuncture.
I had an MRI three months after my second LLETZ, which came back all clear, and six months after that I received a clear smear and HPV negative result.
We are now TTC and are so very glad that we did not accept the initial recommendation.
Please seek a second and third opinion before making a decision. I wish you all the best of luck x x
Just got the results of my cone today and they have upgraded my diagnosis to adenocarcinoma 1a1 that was intermixed with AIS. Two tiny tumors (like microscopic and the largest was 2 mm) were found higher up in the canal. The AIS was what was showing on the surface of my cervix. I did however get clear margins so that's a positive.
The surgeon still believes that the cone may be enough treatment for me. I was told that hysterectomy and trachelectomy will be options for me should I wish but that 1a1 is still able to be treated in the same manner as AIS (pending perfect follow-ups). I'm personally not sure how I'll proceed. My follow-up is in April for more biopsies/HPV re-testing so I have some time to process this. It's challenging to be told in one sentence that invasive cancer was found but then told you're now most likely cancer free.
Interesingly as Rosey2018 said, I was told by my doctor to focus on boosting my immune system as the best way to kick this will be to clear my HPV infection. I'll be focusing the next few months on nutrition and health.
