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Uterine Sarcoma? Uterine Sarcoma?

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Unread 12-05-2001, 05:58 PM
Uterine Sarcoma?

The ladies in the chat room suggested I come here and see if anyone can help with questions about Uterine Sarcomas. I go in on the 12th for TAH/BSO, node sampling or removal. Adenomyosis with an area of questionable concern. CIN III in October of 2000, LEEP followed by Cone.

's are everywhere.

The question is how do I help my kids and family come to terms with a precarious situation that I can't explain? The dd's are 11,9,6 Even after removal of everything the 5 year is not as good as I would hope. What do I say when they want reassurance that I am going to be OK?

Kinda scared and confused.
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Unread 12-06-2001, 02:46 AM
Uterine Sarcoma?

Hi wolfshadow, I am so glad that you came here and introduced yourself, no need to go through this alone. Being scared and confused is a perfectly normal way to feel when you are diagnosed with cancer.
Forgive me but I am not sure what kind of cancer you have been diagnosed with . Is it CIN 3 or uterine cancer ? If you have cancer will you be having any other treatments after the hyster ?
As for the children ... that is a hard one as each child is different and I dealt with each of my children according to their needs and personalities, although my children are a bit older than yours. My youngest was 11 when I had my hysterectomy and diagnosis. I just told her that there were some cells in my body that had decided to break the rules and that the Drs had to try lots of treatments to make them do what they were supposed to . Then as I was going through my treatments I was honest as to how I was feeling. When she asked if I was going to die . I said ' well , no one really knows when they are going to die, so it is best to treat each day as your last and do the best with it that you can.' That probably sounds like a cliche but it helped her alot........
I wish I had the answers but there are always psycologists that specialize in cancer concerns and are usually associated with the oncologist.
Please dont be alone , we are here for you , to support you and help you through . Please let us know how you do with it all . love always x x
Unread 12-06-2001, 05:15 AM
Uterine Sarcoma?

We believe the CIN III is gone now. Now we need to determine the status of my Uterus, I guess my older kids know the reality ( my best friend's mom just died from Lung cancer), they know that you take each day at a time. I guess from what my doc has said everything depends on what the pathologist says. I'm at the point I just smile and move through each day like a shell of my former self. I'm sure it will all work out. Thanks!
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Unread 12-06-2001, 04:04 PM

I am going to have to look up Uterine Sarcomas. I don't know what it is. Did you have a uterine biopsy done? For what disease is the 5 year prognosis you mentioned for? Sorry to be dim witted today.

I hope that you get to your surgery date without too much worry. There are so many knowlegable people at this forum I know you will find the informational and emotional support you need.

Take Care - RobinS
Unread 12-06-2001, 05:18 PM
The 5 year for Sarcomas

The prognosis for uterine sarcomas of any staging is not real hot. From what I understand it is not very common and to top it off it doesn't happen in women my age that often. That should give me something to bank on but my body like to do a lot of things uncommon for my age! How can the same organs that gave me such wonderful kids turn on me? I thin kit's just mad cause I wasn't going to have anymore kids!
Unread 12-06-2001, 07:11 PM
Uterine Sarcoma?

I rarely come here but I thought I should post after reading your story. It was thought I had a uterine sarcoma when I had my surgery. I had no pre-indications. Within a month I had a tumor grow to that of a full term pregnancy size. I was immediately referred to a Gyn/Oncologist and scheduled for surgery in 2 weeks. You are right the prognosis can be tough with some of the staging best but I want to give you some hope and encouragement. I had 3 Drs. think I had a uterine sarcoma but the first words I heard in the recovery room was my Dr. saying it was benign. I pray that this is your outcome too. My Onc. was so uncertain, he ordered a second pathology to be sure, it went to Harvard and he called me Christmas Eve to tell me the second came back benign as well.

I am so sorry you are going through this, it is so scary! Not just for you but for your family. Please don't give up hope. Have your surgery ASAP. All indications prior to mine were bad but my outcome was good. If yours is not as good, you can still have some hope. Use all your energies to get well. I will be thinking about you and praying for you. I know how you feel.
Unread 12-07-2001, 05:53 AM
Uterine Sarcoma?

You can only tell them what you know. Put it in words that they can understand and yet only tell them what they need to know. Explain how you need their help so that you can get better and be an active mom again. Kids are a lot smarter than we give them credit for.

With all of the books on the market, I have to wonder if there is one dedicated to children on when Mom gets sick with cancer. Maybe we need to do a search on this!
Unread 12-07-2001, 10:53 AM
Thanks ladies!

Just got to work after they took 4 big ol' vials of blood. I feel awful! This was supposed to be my last day, but I thought I could make it through until the end. Now it looks like I'm going to have to go home. If anyone can find a book on this subject I would be greatly appreciative! My kids are acting stranger as the days go by and we get closer to my date. If its possible I think I'm coming to terms with the possibilities that may await my family and I am just going to do what I have always done. Live each day as if it were my last! You never know when things will change!
Unread 12-07-2001, 07:31 PM
Uterine Sarcoma?

Taking one day at a time is not a bad thing. A lot of us have taken this motto and it really does work. There is no sense in worrying over tomorrow and letting today go by without appreciating it.
I hope that you got your rest and are starting to feel better!
Unread 12-08-2001, 05:14 AM
Uterine Sarcoma?

I was not good about telling my kids everything that was going on. I really thought if I just went on about things as usual that they wouldn't notice anything. I just kind of blew it off and said I just needed to have a small surgery done and that they shouldn't worry. Well, they worried, but I didn't notice it because I was so caught up in the worrying myself. And I'm not really comfortable talking about things that aren't going right in my life (it was my upbringing). Finally, a real sister of mine told me how worried the kids were, and I realized how bright children are. They notice everything! So I told them in easy terms. I had some cells that weren't doing the right things so the doctor wanted to take them out. I was going to lay around on the couch for a couple of weeks but then it should be OK. For me it was. I figured if the pathology showed something else, I would let them know then. And they were so much more comfortable. My children are 15, 13, 10. 8, 7, and 3. And they all accepted the same information.

So go ahead and tell them in the simplest terms you can without causing them any unnecessary worry. If things turn out a little more complicated then you can talk about it then. Good luck!


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