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Unread 03-12-2004, 07:37 PM

I am 22 years old. I was diagnosed with S.T.U.M.P. (Smooth-muscle Tumor of Uncertain Malignant Potential) on 2/17/04 after I had a myomectomy to remove the volleyball sized tumor from my uterus. The diagnosis group I was lumped into is pretty ambiguous, and considering the rarity of my tumor, no one can tell me what to expect. I am having a TAH on 3/15/04 (Monday...TIKES!) since no one can predict when, or if the tumor will reoccur.

I am angry about losing my uterus, since my fiance and I are getting married in October and have always talked about wanting children. After talking to several doctors we decided that this is what's best. If we tried to wait on the TAH and have a child, I may not be around to enjoy that child, and it just wouldn't be fair to leave my husband and child without wife/mother.

I have been told that there are only about 220 known cases of this type of tumor, and that in a doctors lifetime, they can expect to see maybe only one or two of these cases ever (I am the first for my doc, who had to send my pathology down to Stanford because no one at my hospital had ever seen anything like it).

I mean, I always knew I was one-in-a-million....but I didn't want it to be THIS way.

Much love and support to all,

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Unread 03-12-2004, 07:47 PM
Welcome Carriana

I have never heard of a tumor such asy ours either. Have you tried a Google search? Be sure you stick to reliable, medically produced websites (Johns Hopkins, American Cancer Society, etc.) vs. someone's personal site to get the best information. Alsoi, have you checked out pre-op and post-op? There's lots of good general informatoin there on how to prepare, what to expect afterwards, etc. I hope this surgery brings a total
Unread 03-12-2004, 07:51 PM


I second what Ellen is saying and would add that you might consider a second pathology opinion. Several of the major medical centers have pathologists who ONLY do gyn cancers, (MD Andersen, Hopkins and Fox Chase) so chances are, they have seen your cancer many times.

No additional surgery is required for a second path opinion. The slides are fedexed from one hospital to the next and your surgeon will get the second report.

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Unread 03-13-2004, 11:33 AM

I have had 4 doctors review my pathology and all with the same results: unanimous all around the board: hysterectomy. In fact, two of the doctors who helped diagnos are the two who know the most about what I have...they are in Stanford. My 2nd opinion doctor actually told me that in her books, the gyno-pathology section was written by those same two doctors.

I know I have made the best decision...but t doesn't make that decision any easier for me though.
Unread 03-13-2004, 12:24 PM


So sorry to hear about your situation. We all like to think we're unique--but not because of a tumor!

Obviously you've gotten a medical consensus about having a hyst, and that must be reassuring, despite your understandable upset at this being necessary at this time in your life. I think we all hurt with you about this, and you know that you can count on your hystersisters for support and encouragement and prayers for a full and steady recovery.

Please let us know how things go....

Unread 03-13-2004, 12:32 PM

Carrianna ~
I'd be angry about losing the uterus in your situation, too. I'd also choose to lose it, for the same reasons.

While my husband has 2 kids by a previous marriage, they're both grown. I had never been married and never given birth, so it was hard for me to face losing my uterus, too. We decided that in a couple of years, if we can afford it, we can adopt. I really wanted to make babies with him, but I'm much older than you are -- 42 -- so it was already a risky proposition.

Feel free to PM me if you need to vent.
Unread 03-13-2004, 01:42 PM

Hi, Carianna. How tough this must all be for you. My story is a lot like Empresse's--just a few years down the road. I had a TAH BSO last year at age 45. Both my dh and I were married before and he has adult children from his first marriage. I never had any children. Well, we started the adoption process a little more than 2 years ago. We received a referral for a little girl in February of last year and then, in April, I was diagnosed and underwent surgery for cancer. They found ovarian and uterine cancer (because of circumstances, doctors had to presume two primary cancers).

Whew! That was rough. But here we are, almost one year later and we've got that little girl (she's 13 months old now) and I feel great. Sometimes these 46 year old bones hurt, but what I've lost in strength, (I hope) I make up in wisdom. (And frankly, a little more exercise would make me feel stronger.)

It seems like you're being well taken care of and that you've got good doctors. I identified with your feelings about not wanting to be "special". I felt the same way. Just know that there are a lot of other really special, unique women who are walking this road with you.

God bless.
Unread 03-18-2004, 11:50 PM

Got back from the castle today. HAd to stay an extra day because of fever and other complications. But I am fine now.

It's funny, I feel relieved now that it is over. I though I would wake up sad and depressed, but I actually felt better when I woke up than I did going in.

One problem though, my fiance's parents weren't the most supportive pre-op, but now they are being downright mean. Before I knew his mom was against it, because she was SURE that if I didnt get the hyst I would be fine, no matter how many times I reminded her that there are several women who have died from what I have because they chose not to get the hyst. It seemed his father was supportive before, but just rather quiet, but now it comes out 2 days post-op that they did not support my decision to get my hyst. It seems that they cared more about their grandchildren that will never exist than about my health. It hurts that they would say this to him in such a hard time in our lives, and it wouldn't surprise me if they tried to convince him to leave me to go find a woman who could have his children. But we are strong, and we will make it through, it's just tough when his family won't back us up. I mean, they aren't going to accomplish anyything but hurt feelings by saying something like that after the surgery has already been done.

How can they be so jusgmental about MY body and MY health when they don't know what it's like to be in my shoes. To make one of the most difficult decisions I will likely have to make in my entire life.


Unread 03-19-2004, 12:06 AM

Dear Carrianna,
YAY You're Home! I've been checking in all day to see whether you'd posted yet!

Your fiance's parents are indeed being downright mean. It's awful that they feel this way, and that they chose to express it, AND that they've said this now, just 2 days post-op. And you're right -- the only thing they've accomplished is hurt feelings. No apology later is going to take that away. I just don't understand how his mother -- a Woman -- could have been so "sure" that you'd be "fine" without the hyst.

I wish I could be there with you to give you a gentle hug. I'm 'here' with you 'in spirit,' so consider yourself hugged.

Lots of love,

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