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Finally My First Post! Endo Ca Finally My First Post! Endo Ca

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Unread 02-16-2002, 09:39 PM
Finally My First Post! Endo Ca

Hi Sisters,
Thank you to everyone who has posted to these boards. I have read and been comforted (saved even?) by the words read and information received.
I am 50 and have suffered with heavy periods and anemia for as long as I can remember.
I had my uterine biospy on Christmas Eve. My doctor wasted no time in ordering the procedure and I am grateful. Right after the New Year she gave me the Endometrial Cancer diagnosis and told me I would need a hysterectomy.
To make a long story short (for now) the first oncologist/gynocologist I met with was rather glib about the whole thing and very brief.(I had not found Hystersisters at this time and barely new what was going to happen to me.) He complimented me on how well I was taking everything. When I left his office I proceeded to have a complete meltdown.
Thank goodness I found this website. And lucky me there was a hystersister luncheon coming up. I attended and had a great time. I got confirmation from one of our sisters that she had used the surgeon I was thinking of switching to.
I then unexpectedly spent the next 4 weeks taking care of my mother whom I rushed to the hospital the same day as the luncheon. Gee, enough drama already!
My new doctor was great and I went in with lot's knowledge and great questions thanks to you all. Guess what? He answered all my questions before I even asked them. I was impressed. I even got a hug at the end of my appointment.
So it is Endometrial Cancer, Grade 1. I also have something funny happening on the outside, between the vagina and rectum. The first doctor biopsied it and said it was cancer. The second said it was precancerous. Sounding better all the time. But my surgery permission slip said a vulvectomy with exploratory surgery will be done at the same time as the TAH/BSO. My doctor said to expect about a 3 inch incision which will not leave a scar or impact sexual relations in the future. Anyone else had this?
I go to the castle next saturday the 23rd. Trying to keep sane and not bite off to many people's heads this week.
Any words of encouragement for the countdown are much appreciated. I will try to find my way to the chatroom too.
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Unread 02-17-2002, 01:53 AM
Finally My First Post! Endo Ca

Hi seeshelley, so glad that you have posted here on CANCER CONCERNS , it has helped me a great deal.

First of all, sorry about your diagnosis, cancer is a frightening thing to be facing, it is quite normal to appear to be doing really well on the outside but having 'complete meltdown' on the inside. But it sounds like your oncologist has it all under control, that's great. He sounds like a compassionate person.

I don't have any experience with endometrial cancer but there are a few ladies who have and I am sure they will be here soon to help. Neither have I had any experience with a vulvectomy but I have been searching the net and here are a few websites that may help.
I just want you to remember that cancer can be beat. Stay as positive as you can and dont ever forget that we are all here for you. We have ears to listen, shoulders to cry on and arms to give big hugs. You take good care, much love always
Unread 02-17-2002, 05:19 AM
Finally My First Post! Endo Ca

Hi Seeshelley and Welcome,
I am sorry to hear of your diagnosis.
I had endo cancer, I am 38. Mine was a stage 2b grade 2. Endo cancer has an excellent cure rate especially if it is stage 1. You will probably not need any further treatments. After the Hyst you should be considered cured.
When I was first diagnosed I could not stop crying, but here I am it is coming up to my one year anniversary since my hyst, and I have stopped crying. It will be OK. Hang in There! I have no experience with the vulvectomy, but check out Robyn's website, it should help. I am sending you we will all be waiting to hear how you are doing, don't forget to keep us posted.
Good Luck
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Unread 02-17-2002, 11:04 AM
Finally My First Post! Endo Ca

Hi Shelley!

I am glad to see you found your way here. I told ya' I would be keeping an eye out for you, so here I am. Did you make it to chat? Let me know if you need some help there, ok?

Robyn and Valentina are so right...this is survivable. We will all be here for you. It sounds like this was caught early and surgery may be the 'cure' and that the Dr. will just watch you for awhile. If it turns out that you need further treatment we are here for you.

Glad you got to meet some of the 'faces' here at the luncheon. Keep us all posted on your progess along the road to the castle, ok? We really do all care.

{{{{{{{{{{{{{{big hugs}}}}}}}}}}}}

Unread 02-17-2002, 12:50 PM
Finally My First Post! Endo Ca

Hi Shelly,
Just wanted to pop in with some hugs for you as well.
You seem to have a great attitude as you go into this which is great. I am so glad this was caught early, and that the surgery will probaby take care of it all for you. Thats always wonderful!

Keeping you in my thoughts and prayers Shelly for your surgery next week!!
Unread 02-17-2002, 05:25 PM
Finally My First Post! Endo Ca

Hi Shelly,
I am here for ya, I have had a vulvectomy!!! From what it sounds in your description the only area of concern on the outside is the perinium which is pretty good. I had mine last Valentine's day. I had VIN 3 (Vulvar epithilial neoplasia/carcinoma in situ) the had to remove both inner labia and all of my perinium. I had never heard of this before the surgery and didn't have this site or really any time to research. It all happened so fast. After ward it was difficult to recover from both physically and emotionally. I felt mutilated. It wasn't healing. I got an infection and my surgeon was in surgery and my GP freaked out when she saw it. She had never seen one done and was worried that I would never be the same. She sent me to an oncologist. It was a horrible experience. Long story short, the oncologist was an a**hole.... told me it was full blown cancer and then said in his best Emily LeTella voice "Nevermind". I went back to my surgeon who gave me premarin cream that helped it heal and before I knew it it healed fine. I don't look normal to myself but if I were in Penthouse (LOL) I doubt anyone would notice a difference. My perinium is entirely made up of scar tissue formed while healing. I was scared that it would be painful during sex but it doesn't feel any different at all. I have to have biopsies every 3 months to make sure the VIN doesn't come back. So far so good. If you had told me a year ago "You CAN get through this!" I would have thrown the covers over my head and told you to go away. But you can. It is scary. It isn't fair. But you can. Kick this thing in the ***, Shelly. I'll be here for ya, so will lots of sisters

IM or Email me ANYTIME!!

Debbie :dragon:
Unread 02-17-2002, 06:41 PM

Thanks for the posts and the information.
I went to the web site Robyn suggested. Very informative and thanks. Fortunately I think I am in for a very minor procedure in this department. Let's hope nothing changes that!
My big goal was to make it to my grandson's 5th Birthday Party before surgery, which I did today. Had lot's of fun.
Thanks again for being there. I feel very supported and comforted by those "who have been there".

Unread 02-18-2002, 03:08 PM
Finally My First Post! Endo Ca

Hi, Seeshelley!

I'm sorry to hear of everything going on for you right now, but it sounds like you have the right attitude! This can be a very scary time, so I'm glad you found us.

I've not had a vulvectomy, but I did have quite a bit of my vaginal wall removed right at the entrance (some would call it the vulvovaginal area). Remember, anytime you have an incision, there is a scar--it just might not be noticable. I'm still a little sore in the area of my incision (only during intimate moments ), but it is getting better all the time.

I used a lot of cold pacs after my surgery, which was very helpful. Check with your doc to see what his recommended interventions are for discomfort in that area.

Good luck with your surgery! I hope all goes well.


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