New to this...never thought I would join a Cancer forum

rockstar

Hi everyone!

I'm really just looking for some support from people who have been and are going through the same things as me.

This whole experience is just so surreal to me.

Thanks in advance to everyone's support! Very Happy

Here's my story:

I have been getting abnormal pap smears since 07. This is was no big deal as I have cervical dysplasia from HPV and had 3 colposcopies with negative results. I joke with my gyno that my file is much bigger than women who have been going to her for years as I am only 20. But regardless, I went in for my normal 6 month pap and hoped that I would finally get a negative result, but got another abnormal result. Scheduled a colposocopy and went through the motions. Only this time, she saw something on my cervix. We took 3 samples from the lesion and normal tissue.

Next week, I get called to come in right away and to bring a family member. My dad was the only one available so he came with. "It may or may not be cancer." That is horrible sentence. She gives me the name of a gynocological oncologist. That was Wednesday.

Pathology comes back the next day and confirm it is cancer. Looks like adenosquamous carcinoma. AKA Glassy Cell. Great. I have a rare aggressive invasive cancer. She warned me that in my appointment with the oncologist, he would recommend a radical hysterectomy. That was Thursday.

Friday I go in Ceder-Sinai, meet with him, and decided to do a cone-biopsy. Somehow we were able to do it that day! How crazy. I was so nervous that I couldn't eat or drink anything all morning so I guess it worked out.

Today is Tuesday evening, I find out that the cone biopsy revels I'm a Stage 1B1 patient and they want to do a radical hysterectomy on Friday (in addition to the lymph dissection of course). In less than a week I go from happy go luck to losing my ability to have kids.

I'm so freaked out for Friday. I don't even know how to process it. At this point i'm just praying that I will not have anything in my lymph nodes so I would not have to go through chemo or radiation.

The real scary part of this is that 27 days had passed from my pap to my colposcopy. My Dr. said that there wasn't anything on my cervix when I had my pap. So in less than a month a lesion over a centimeter long grew on cervix so someone could visibly see it. To think that if I did not have HPV and went in every 6 months for paps, how long would this have gone unnoticed? Scary.

In

Hi rockstar,

First of all so sorry I didn't reply sooner.

Secondly, I'm sorry for your news. It sounds as though you have a great attitude, and that goes a long way to kicking Cancers butt.

I know it is scary and freaky and every kind of awful. BUT this may be the end to all your problems and worry towards Cancer. It sounds like you have been through Hell already with all the constant tests and procedures.

it is good to hear you are thinking positive and not dwelling on the awful decission that was taken out of your hands, but about making sure the Nodes are all clear. I think you are amazing!, and proud to see you are keeping your chin up.

Good Luck and I am thinking of you, Keep us posted.
_________________
Thinking of you Inica

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

kimberlyanne07 · Regular Joined: 09 May 2009 Posts: 45

im kim. similar situation different diagnosis. i have cin iii. no cancer, but if you ever want to talk im here for you to pm or just talk through threads...but im only 19 so the age is a lil closer. you've probably read my thread from when i posted when i was new.
stay positive, thats hard for me even at my lower stage.

momnotmrs · Regular Joined: 06 Aug 2009 Posts: 12

Sounds like you're doing the right thing!
I heard of a method to transplant ovarian cells to your arm temporarily to retain your fertility. Have you checked it out? Is it an option?
I have 5 kids so I'm not worried about fertility loss (too much fertility maybe).
My sister swears that she was diagnosed with Stage 1 and was told she'd have to have a hysterectomy, but she got pregnant instead and it took care of it. My doctor said she could not possibly have had Stage 1, but must have just had some abnormal cells. I dunno. I've tried to find information about her claims on the Web with no luck.

Lizizurtx · Regular Joined: 24 Sep 2009 Posts: 13

Wow! Rockstar, the stuff you have been through and you still have this great attitude that comes out in all your posts!
I have kind of pieced together your story here and there through different threads and I am in awe that you were so strong and continue to be that way. It's really inspirational--to me anyway, so thanks for sharing.

You had a radical hysterectomy where they took out everything including the pelvic lymph nodes right?
I just have a couple of questions...
Did you have pain anywhere in your abdomen indicating your lymph nodes were affected?
From reading your story it was my understanding that they didn't find any cancer in the lymph nodes with you..so why did they remove them?

I could have my facts all wrong AND if I am asking too much feel free to blow me off!! HAHA! I am just trying to understand everything.
I have not been diagnosed with anything yet and of course I am doing lots of reasearch (I posted my story yesterday), the thing is lots of questions are coming to my mind and I figure who best to answer that someone who has lived through it!

Hope you are doing well & love your posts!

rockstar

HI Liz,

LOL i just responded to your 1st post and then I read this. Thanks so much for liking my posts.

When I had a radical hysterectomy, the removed my cervix, uterus, top 1/3 of my vagina, and the surrounding areas of my cervix and uterus. They did not remove my ovaries. My dr felt that they did not pose a risk to be "infected" yet by my cancer and that they would better serve me if I had them. (so I don't go into early menopause and have to have HRT at 20 Razz

)

In regards to the lymph nodes, what they do is biopsy them, not necessarily "remove" them. However, depending on the surgeon, they sometimes just remove the whole node. Lymph nodes are sort of like trash receptacles of the body where they basically filter all of the gross stuff that comes into our body and has white cells that destroy the bad stuff. They are very important to our immune system and that's why they they often become enlarged or inflamed when we are sick with an infection. Lymph nodes in that pelvic region of the body won't cause any certain pain if they were infected. If anything, a lymph node toward the groin region could become enlarged and cause discomfort that way.

So with me, they biopsied (removed a sample of the the node) 20 different lymph nodes. They then take those samples and test them for the presence of cancer. So they technically have to "remove" my nodes to find out I did not have cancer in them!

I think I sounded a bit like a science teacher there. Razz

I hope this helps dispell the confusion. If you have more questions, feel free to ask! Smile

_________________
Stage 1B1 Adenosquamous Carcinoma of the Cervix.
Diagnosed 5.7.09 @ age 20
Radical hysterectomy on 5.15.09
Wedding date: July 23, 2010

Lizizurtx · Regular Joined: 24 Sep 2009 Posts: 13

Hey Rockstar!

HAHA! You should be a science teacher!
Thanks for explaining, it helped.

Very Happy

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