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stromal sarcoma stromal sarcoma

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  #1  
Unread 01-18-2002, 05:22 PM
stromal sarcoma

Does anyone else have this. I have been diagnosed with low grade ESS. My hysterectomy is next week on the 29th. Ovaries, tubes, uterous. It was only Monday afternoon that I was still not informed of this and I think it was the last time that my only thought wasn't cancer--wish I could turn a switch and make my mind better. The good thing--the oncologist feels that it will be gone with the surgery. The bad thing-- I probably won't be able to take estrogen. So I'm freaking out thinking about how rotten I'll feel when my body realizes there is no estrogen there. He said I'll probably take taximofen and something else( I should have written it down) that is on a patch. I sure would like to talk to anyone else who has or has had experience with this.
Thanks
Susan
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  #2  
Unread 01-18-2002, 06:01 PM
stromal sarcoma

HI SJL,

I'M WONDERING IF YOUR NOT TALKING ABOUT ENDOMETRIAL CANCER.

I TRYED TO LOOK UP ESS AND CAME UP WITH THE ABOVE.

ENDO CANCER IS IN THE UTERUS AND IS A SLOW GROWING TYPE
YES, IT CAN BE CORRECTED BY SURGERY. I NEEDED NO FURTHER TREATMENT SO FAR.

AS FAR AS ESTROGEN, I TAKE VIT. E 400MG. DAILY AND I'M FINE.
I DO NOT TAKE ANT HORMONES BY CHOICE.
BUT I'M STILL NOT SURE IF YOUR DIAGNOSIS WAS THE SAME AS MINE.

PLEASE FEEL FREE TO E-MAIL ME IF YOU NEED ANY MORE INFO, GOOD LUCK

  #3  
Unread 01-18-2002, 06:20 PM
ESS

Hey Puppy 2, Thanks for the reply and the hug :-) Endometrial Stomal sarcoma is a very rare endometrial cancer. It is like 1% or less of all Endometrial cancers. So I that's why I was looking here. Apparently when it's removed it's gone. Unless it has spread. It is very slow growing. I won't know any more till after the surgery. I don't know how long it takes for them to biopsy the lymph nodes that they'll remove. I just see some big life changes coming in my health and none of them look inviting. (except no more periods)
What kind of surgery did you have?
Thanks it's a big help that someone replied
Susan
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  #4  
Unread 01-18-2002, 06:35 PM
stromal sarcoma

YES, YOU ARE RIGHT, I WENT TO GOOGLE AND LOOKED IT UP.

IT IS VERY RARE AND IT IS CURABLE THANK GOODNESS!!

I HAD ENDO CANCER STAGE 1. MINE WAS CONTAINED AND DID NOT GO OUTSIDE OF THE UTERUS. AS I SAID , I DO NOT NEED FURTHER TREATMENT.
YOU HAVE A LITTLE DIFFERNT KIND. AT LEAST IT WILL BE GONE WITH THE HYST.
AND NO MORE PERIODS!!

DON'T BE TOO NERVOUS ABOUT THE ESTROGEN. MOST OF YOUR SYMPTOMS PASS IN TIME.
I'M SURE SOMEONE HERE WITH BE ALONG TO HELP YOU OUT ON THIS SUBJECT.

AGAIN , GOOD LUCK KEEP US INFORMED.
  #5  
Unread 01-18-2002, 07:48 PM
stromal sarcoma

Hi Susan!

Welcome to Hystersisters! I'm so glad you found us here.

I don't know a whole lot about this but wanted to say I'm so glad to hear that this is a slow grower and surgery may be enough. That's wonderful!!!

I also can't take estrogen, my type of ovarian cancer is a estrogen receptive type. So, its fast approaching two years without any form of hormones and so far, it hasn't been nearly as difficult to handle as I had imagined. I do take a multitude of vitamins to help with the hot flashes and night sweats. I haven't really noticed any real problem with mood swings or "major" irritability (hope this continues)

I wish you the best for your upcoming surgery and will be saying an extra prayer that your surgery is swift and uneventfull.

{{hugs}}

Vicki
  #6  
Unread 01-19-2002, 11:17 AM
stromal sarcoma

Hi Susan,
How wonderful that you found us!
I had endometrial cancer. Stage 2B. Unfortunately, I required furthur treatment, after the Hyst. (radiation). It is wonderful that yours is so slow growing.
I do not take any hormones, although my oncologist seems to think it is fine if I did. I am worried about breast cancer, though as well.
I am feeling fine....occassional hot flashes, not horrible, they are over rather quickly.
I do take vitamins and try to eat healthy, although I have put on some weight.
May suggest that you visit the desert oasis, there are many women there who do not take hormones for many reasons and are very knowledgeable.
I wish you the best of luck and please come by again and let us know how you are doing.
Keeping you in my thoughts and prayers,

Valentina
  #7  
Unread 01-19-2002, 11:37 AM
stromal sarcoma

As you know already, I had a form of stromal cancer and the thing to ask (which I didn't think to say before) is whether it's an estrogen receptor or progesterone receptor cancer.

Stromal cancer appears a number of places. So, you can have stromal cancer in the uterus but it's not uterine cancer. I had cancer in my ovary, but I didn't have ovarian cancer. It makes it confusing to read about.

Mine wasn't and my doc let me take the lowest dose of estrogen after waiting for the first CT scans etc. For me, the lack of estrogen was taking a huge toll in brain fog and urge incontinence. That doesn't happen to everyone (most women?). Other than those two things the hot flashes etc. weren't bad.

So, my point is (yes I have a point ) that there are all kinds of trade-offs and different kinds of cancers and you have to work out your own answer.

Because my work is all brain work and everything I did was measured by distance from the bathroom, (and osteoporosis runs in my family) estrogen seemed worth a try. But then stromal cancer does not seem to be related to breast cancer--so having it hasn't raised my risk above "normal."
  #8  
Unread 01-19-2002, 03:52 PM
thanks

Thank you so much all of you who replied. Today I told my kids (one of whom is home from college) Luckily the scenario laid out in front of them isn't too scary. For me--I am totally upset. I keep thinking I feel fine and have no symptoms so they must have me mixed up with someone else. Denial denial. The only reason we did find this (and luckily at that-if we want to call it that) is that I went in for the third time to have cervical polyps removed. This time the biopsy showed the cancer cells. Apparently this cancer has a polypoid component. I have had clear paps and really no concerns. My periods have become irregular but I thought it was my age. (48)
I'm a really healthy person who exercises and eats right and watches her weight. This is mind boggling.
I don't even know how to tell anyone. It's a relief to share it with my family as I've carried it inside all week until I saw the oncologist. But this is a small town and as soon as I tell someone the people here will be talking and the story will grow. I have thought about not telling anyone, yet it's too stressful to carry a secret like that. How did you all share your news with your friends and colleagues? Any suggestions?
I am soooo stressed that I feel like throwing up everytime I eat. I keep holding back tears. I can't sleep. I have to figure out how to get some rest and nutrition. I've lost 6 pounds in the last week. Two days in a row all I could choke down was a half a piece of toast. I was going to ask the doctor about this so maybe he could give me something and I forgot. I mean can they give you something to help you relax or get a good nights sleep? I thought about tylenol pm but am not supposed to take any aspirin products ,tylenol and motrin in that list
I realize that people here have cancers that are a lot tougher to face, and that my prognosis is good. But I'm still in the land of shock, denial, and disbelief.
And everything in me doesn't want surgery. I don't want to only do liquids the day before. I dread the stuff that I have to drink to clean my intestinal system. I don't want to do the enema. I dont wanna don't wanna. whine whine whine--my little inner whiner is continually there while the panick button keeps going off over and over.
Any suggestions on how to cope? You've been there---
The best thing that's happened to me is that I found you people and you have talked about your experiences. Especially Trish as you helped me understand and also took away the fear of it being in my ovary.
Thanks you all and really thanks for listening.
The panicked Susan
  #9  
Unread 01-19-2002, 05:48 PM
stromal sarcoma

Relax Susan, everything you are feeling is completely normal. I had numerous anxiety attacks when I first found out I had cancer.
I am 38, and a single mother of a 12 year old boy. I WAS PANICKED. I chose not to tell my son, as my dad had recently died from cancer. When I was with him I could not think of cancer and I controlled my emotions for his sake. Other times I sought the support of friends and family. I wish I had found hystersisters sooner, but I did not find them until I was about 4 weeks post op and was going through my radiaiton treatments.

I could not wait for my surgery, I just wanted that thing out of me.
The contaminant that it was.
I took ambien (sleeping pill) to help me at night.
Take it one day at a time. Be strong, this horrible disease can be beat!!!!! Just stay positive.
Keeping you in my thoughts and prayers.
Valentina
  #10  
Unread 01-21-2002, 04:59 PM
stromal sarcoma

I also had endometrial cancer stage 2 which was only discovered after hysterectomy. I had second surgery to remove tubes, ovaries, lymph nodes etc. These were all clearThis sent me straight into menopause but as the cancer was oestregen fed I can't take HRT.I have some night sweats and some hot flushes during the day but every thing is manageable so far. I take calcium and vitamin D tablets .My legs are swollen with lymph edema because of the removal of lymph nodes. I'm half way through my chemo and I now have been told I have to have 25 sessions (on a daily basis over 5 weeks) of radiotherapy. So far everything has been totally ok ish
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