Sex Cord Tumor

I had a TAH (left one ovary) on 1-11-02. The pathology report came back today with a diagnosis of Sex Cord Tumor with Tubular Annuals (sp?). My OB/Gyn says this is an extremely rare ovarian tumor. It is considered a Stage 1 with no further treatment needed other than regular exams with her and the oncologist. The prognosis is good; however, as there have been very few studies due to lack of subjects, recurrence rates are unknown as are long term consequences.

I asked my doctor if there were any support groups where I could get more information and advice. She said there were not enough people for one! I was just wondering if ANYBODY else out there has been diagnosed with this and can offer some words of wisdom. Thanks!

It's scary and whent they think you're cured they send you off out of the office and you're thrown for a loop. Been there, done that, and bought the t-shirt form the Hystersisters store (plug )

Sex cord tumors of annular tubules are what they call a stromal tumor. I don't think we've had others just like it but if you search on stromal or stroma you'll see there's a number of us have wandered through here.

Yes, I know what it feels like because I had an even rarer stromal tumor--and yet another person showed up here who had it, so you never know!

For ovarian stromal tumors of various kinds (and as a group they are about 5% of all ovarian cancers), they're willing to give numbers like 90% survival for 10 years.

In other words, extremely low rate of recurrence (though do follow through on any check ups or tests they recommend). If you search in google (www.google.com) you'll see there are a lot technical medical sites that talk about it and even show pictures. They know enough to know that a stage I stromal tumor is predictable and well-behaved.

I'm over 2 1/2 years post-op and not a sign of recurrence (knock on wood). So pamper yourself and heal!

Obviously your doctors have little concern or they wouldn't have left an ovary.

Emmie, I'm the other person with stromal. Mine is in my endometrium. It's a 2 cm fibroid type tumor (they think anyway since it isn't out yet)
I think that maybe if you have to have a cancer this is the one to get. I can tell people when I tell them why I have to take 6 weeks off; that my oncologist says when it's out it's all gone with little chance of reoccurance. In fact he says if it does reoccur it's because it was missed during surgery. So everything comes out next week including lymph nodes.
If I were you (after all I've read and experienced and researched this past week) I would have it removed. They don't know till they test it if it feeds on estrogen. But many times it does and your ovary would then be feeding it. Do some research and talk to an oncologist.
You can research stromal sarcoma on the web, but be careful because there are 3 forms. One form has different levels. low or high. If yours is slow growing then it is low level, as mine is. My oncologist said if I read "scary stuff" that isn't the kind I have.
I only found this out last week and went through a lot of panic attack, freaking out, losing my grip, unable to concentrate anguish. Thank God I found this site.
Also thank God for the Xanax prescription I got yesterday. Finally slept last night.
Write to me if you want--or post here. Your tumor is somewhat like mine and I've been looking everywhere for information.
This is even listed on the "rare diseases page"
Good luck--but seriously I think you should get it out.
Susan
ps I don't want to lose this email so I'll send it but then I'll send another with a URL for you to use

http://www.thedoctorsdoctor.com/dise...omaltumors.htm

Hope this helps
Susan

I just knew I could count on my fellow "HysterSisters"! Thank you so much Trish and Susan for the info and personal accounts. Actually, I'm pretty relieved to know it's one of the nicer(for want of a better word) cancers to get. I just hate that they know so little about it. I'll check out the web sites you mentioned as soon as I'm done herel

Susan, I had the surgery on 1-11. I completely understand how you feel. I was nearly out of my mind with worry prior to the surgery. Everything went fine though! The tumor was bigger than they expected (12cm x 10cm x 8cm) so they had to do a vertical incision, but they got it all. Recovery has not been as bad as I expected. I'll keep you in my prayers. Please check back in and let me know how everything turned out. Good Luck! Emmie

Just to keep you ladies with stromal tumors posted, and to see if you have any advice. My tumor had infiltrated the lining of my uterus up to 3/4 of it. So it was staged at level IC . Because of my youth, and physical condition, 48 years young :-) and in good shape, my oncologist wants me to do 5 weeks of external radiation. He says this will minimize the chance of recurrance. Which could happen anytime in the next 20 years and most likely would be in the pelvic cavity.
ANy comments? Opinions? Not something your doctor said is it? I think it's such an obscure cancer that there are many different ways to treat it. So I am worried about long lasting side effects, yet don't want to see this reappear either.
Man and to think 3 weeks ago I had no idea that I had cancer. Now I'm sitting here with this giant scar--aching---and facing radiation. Life does take different paths doesn't it.
Susan

Dear friends,

I found great comfort from this site back in June 2000 when I had my tah/bso due to a stromal cell tumor. My particular type was called a Granulosa Cell tumor. I have had no recurrence in 1 1/2 years and my oncologist is very optimisitic and has been since the surgery and diagnosis.

Yes, this is one of the rare tumor types that is found in only about 5% of the cases of ovarian cancer. I did not have to have any chemo or radiation after my surgery. I have had follow up visits for the 1 1/2 years after on a scheduled basis. For the first year it was every 3 months, now it is every 4 months and will soon change to every 6 months then once per year. I will and have already had a yearly CT scan. I am so happy that I have not had any spread at all.

My only complaint now is that I am coping with a great sense of anxiety mostly related to my health concerns. My oncologist says that as time goes on this fear will lessen. He is right to a point. I will probably still freak when it is time for my CT scan again. This type of scanning is too real, you know what I mean? Everything is right there on film with now place to hide! I had to have to MRI's following my first CT scan but luckily what they were looking at turned out to me areas on my liver that were normal for me. My oncologist said that my liver probably looked that way from birth.

Life is good. I exercise 2 times a week, try to eat right, and take vitamins and some calcium supplements.

I want to grow old, and love life. I plan to be here for many, many years and it will take more than this little bump in the road to get me!

Good luck, and good health to you all!
Donna Cachero

wow donna, it sounds so much like what I have. I swear if I had a different Dr. I wouldn't be doing radiation. I am going for another opinion with an gyn oncology team at a cancer center soon I hope. I know how you feel. I think I'll always be on the lookout for return. That's why I am doing the radiation. Apparently from my research--there is a high incidence of return in the pelvic cavity--up to 20 years later. Yet radiation does not prolong life--it just prevents the relapse. My take on it is that 80% of women never see it again, and radiation isn't necessary. Just watching is. And then treating it.
But mine invaded the lining of the uterus quite deeply and that's an indicator it could return. :-P So we're hedging our bets. And then I will be on the same type of schedule as you. Although my Dr doesn't seem to think a CAT scan is necessary unless I have any symptoms. What symptoms? I really didn't have any in the first place!
It feels so good to hear from women who have had this and had no recurrance. I have heard from maybe 5 women. There is a little "network" out there of a few of us who have found each other. If you want any information let me know--there is actually a forum you can join.
Thank you so much for posting!
Susan Lambert
Low grade endometrial stromal sarcoma

Yes there is a support site where you can get loads of information and talk to other women with sex cord ovarian tumors/cancer.

www.acor.org
go to support groups
choose ovarian.

Please email me if you need to. RobinS