New here just diagnosed with AIS

New here and just diagnosed with AIS.

First I just wanted to mention that I have been reading your posts and all I can think is what a wonderful group of women on this site. I came here because I have been recently diagnosed with AIS and from all my research it sounds like a hysterectomy is ultimately what I will be having. So I came here to research that and was shocked to learn of all the pre cancer and cancer stories, after all I thought I was hear to lean about the hysterectomy. I feel like what I am going through is nothing in compared to what some of you have been through. I hope to gain support/strength from you.

I’d like to share my story so far. In hopes I can find other women with the same feelings, hopes and fears as I have.

I had 2 bad paps so and my family Dr sent me to a gyn for a colposocpy, where he did a biopsy. 2 weeks later I got the results. AIS…I didn’t know anything about it, how to deal with it, what it is or what was going to happen next. After all All, all I have been hearing over the last 6 months is bad paps come back all the time there is nothing to worry about. Etc. During the results appointment I got quite emotional so he wrote a few things down for me and told me he was referring me to a colleague that he didn’t feel comfortable treating me with this diagnoses and wanted a second opinion. I am being referred to a local cancer hospital (I live in Canada) and waited a week for my appointment to be set. I am seeing a gny/onc on May 3, where I believe they are doing another colposcopy. The wait is killing me! I know I need to wait to my next appointment but I have so many what if’s going on in my head that my thoughts are becoming unbearable. Part of still hopes the diagnoses is wrong, these things happen right but what if things are worse? Why do I need another colposcopy? I don’t have any children as of yet and the thought of not having any is very upsetting. The news that this is most likely caused by the HPV is also very disturbing. Maybe I am naive but until I started reading up on the colposcopy I didn’t know anything about HPV. If I have this is this staying with me forever? Will other types of cancer start popping up because I have this? This all just feels like it’s too much to handle.

I just turned 34, I am an only child, my mom passed away 7 years ago (lung cancer) and my dad has not been well. I have not told him yet because I still don’t feel that I know enough about this to share that with him at this point and I know how devastated he would be. I have a few friends that I have told and my boyfriend and they have been very supportive but I'm hoping to hear from some of you. Sorry if this is a bit scattered but this is how my head has been ever since I found out.

Write down all of your questions for your doctor. One thing you might want to ask about is fertility and what you can do to preserve the use of your ovaries. While I know the thought of not being able to carry your child is devastating...it helped me to hold on to that glimmer of hope of at least being able to use a surrogate.

It IS a lot to handle, so please make use of the boards here and of your support people. Even if you are just repeating yourself, it helps to get it out of your head.

Nerako-

I am sorry you are going through this.

Let me give you a little of my history. I am 37 and have always had regular pap smears (20 years). This Jan was the first time I had a bad pap and even then it was only slighty abnormal but the HPV test was positive. I had a colposcopy and ecc, and was diagnosed with AIS! The next step was a Cold Knife Cone biopsy and D&C to stage the cancer. I had to wait three weeks for the cone biopsy and the wait was torture. My anxiety was at an all time high. I had both procedures done Feb 25th and the diagnosis was AIS Stage 0 (phew). My margins were clear and no AIS was found in my uterus during the d&c. Prior to the Cone Biopsy I did see a gyn/onc for a 2nd opinion and he viewed my cervix just to give me his opinion on how severe it could be ( I was an absolute wreck and just needed to see an "expert"). After the Cone I went back to the gyn/onc for treatment options. The recommendation from both by gyn and gyn/onc was hysterectomy, keep the ovaries. That being said, I have two children and was not planning to have any more. If I wanted more kids, I would have had the option to get started and be checked every 3 months.

Like you, I didn't tell anyone. My parents are in their late
70's and have health issues of their own. I didn't have the heart to worry them. Thank goodness for a supportive/sensative husband.

I had my Laprascopic Assisted Vaginal hysterectomy on April 13th! I feel great but am still a little anxious waiting for the pathology results on my cervix and uterus. Chances are slim they would have found residual disease but still...I tend to worry.

As far as HPV, I too had no idea what that was until my diagnosis in January!! I was told that HPV can lay dormant for several years. My gyn/onc suspects that when I got pregnant in Jan 09, my immune system was comprimised which possibly woke up the HPV. In any event, he also mentioned the risk of getting oral/anal cancer is very low as my cancer was caught early and considered precancer. That doesn't mean I am not concerned but I refuse to live life worrying about what "could" happen. I will take good care of my body, go to my follow-ups, and pay attention to anything abnormal...I will also be proactive and get exams sooner than later. Again, I tend to worry.

Please feel free to ask anything! I know what it is like to have SO many questions...this board has been a great support and you are not alone.

Best wishes to you and hang in there. Take care of your body, eat well, take vitamins, exercise, and be as positive as one can be. It all helps!

(((Nerako)))

We're so sorry that you're facing all of this but are very glad you found us! Here, you'll find many wonderful ladies who'll be glad to share their experiences, information and support.

I'm also glad to hear you're seeing a gyn/onc. They are the experts, and you want the very best where your health is concerned. Don't be afraid to ask anything and get copies of your reports, scans, etc.

It's a lot to get your mind around for sure but just take one step at a time. Remember, you're not alone!


monami

Hi Nerako,

I totally identify with your story....I had a regular pap, then a colposcopy, then a cone biopsy and D&C....and now have a diagnosis of 1B1 cervical cancer (they also found bits of the cancer in the endometrial lining they took from the D&C and the tumor on the cervix it touching the upper vagina ...so I will have a Rad. hyster. in about 4 weeks (they are waiting for the cervix to fully heal before going in so there is no swelling to impede the view of the surgeon)

I also have not told certain family members, my parents like Cabowaba's are in their late 70's and if I use the word "Cancer" they will be a mess...so I've just told them that the hysterectomy is due to fibroids and then if after the surgery the patholoy report comes back inidicating a need for chemo and raditaion, I'll tell them then.......

It's so hard to keep this from people but both my sisters know , and all my friends, so that helps!

Best,
Lynda