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Endometrial Stromal Tumor Endometrial Stromal Tumor

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Unread 02-23-2003, 10:15 AM
Endometrial Stromal Tumor

Well...I've met with the GYN/Oncologist and between him and my regular OB/GYN, they will be going back in after my Vaginal Hysterectomy to remove my ovaries and lymph nodes doing a groinal dissection (?). I was diagnosed with a endometrial stromal tumor that had almost completely went through my vaginal wall. It's a very rare and slow growing type of cancer that can manifest itself in various parts of the body. My regular GYN has never had a patient with this before and my GYN Oncologist has only seen it a half dozen times.

It seems the ovaries, by producing estrogen, can also produce this type of tumor, which requires the removal of them. My concern is hormone replacement therapy. I will not be able to take anything that produces estrogen, even something like Estroven or Soy products will be off limits. I guess I should worry after the surgery as to what to do..but I just wanted to vent a bit. I will, he has said, have to take progesterone, to keep the tumors at bay. He said a patient he had developed a lung tumor after being clean for 15 years, and when progesterone was prescribed and taken, the tumor disappeared.

The surgery will take place this summer, July, I'm hoping. At least I won't feel so cooped up with snow and lousy weather during my recovery which should be about 4 weeks.

Are there any other women out there who do not take any estrogen supplements that are taking other things? I'd like to know what you're doing to handle being thrown into menopause.


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Unread 02-23-2003, 10:54 AM
Endometrial Stromal Tumor

Hi Kathy,

I too have an Endometrial stromal tumor. They removed my ovaries during my TAH. My tumor did not infiltrate anywhere as it was caught very early. I too was taken off estrogen and put into Surgical menopause. I feel great! I have about 1-2 hot flushes a day, usually between 5 & 6 in the morning. Other than that and feeling foggy headed sometimes, I feel better off estrogen than I did on it. I take flax oil, calcium with magnesium, vitamin C and the B vits, Coq10 and and a baby aspirin and I guzzle water and try to avoid refined sugars. Also, I put lotion on immediatly following my showers to keep reptile skin at bay. I was told that I could take Progesterone but it does tend to cause irritability and mood swings in some, so I opted to "watch and see". I have 6 month follow ups with my Gyn/Onc and a chest and pelvic CAT scan every 6 months as well.
Why are they waiting until July Kathy? I'm not a DR. but I would think they would want to go in and remove your ovaries and lymphatic sampling sooner rather than later? Please feel free to write to me anytime. Also, there is a support group on Yahoo for women with only this type of Cancer if you are interested. It is [email protected]
Take care of yourself, and I hope this helps.
Unread 02-23-2003, 11:10 AM
Endometrial Stromal Tumor

The Oncologist/GYN said he didn't think it was something that needed to be done right away. I had a CAT scan after the surgery, and the only thing that came up on it was a small cyst on one of my ovaries that appeared to be functioning as it should. You're not even taking progesterone then? What is your follow up plan on checking for more tumors? My doc said he will follow up for the next few years with a CAT scan every six months..then after like 3 years, have a CAT scan once a year for 2 years.. He also stated taking something like Effexor (an anti-depressant) low dosage..to keep the hot flashes and other menopausal symptoms at bay.

Thanks for writing back. I will be checking out that yahoo group. I ran out of print ink .. I have to fill up the cartridge to print your reply. Where in VA are you?
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Unread 02-23-2003, 11:59 AM
Endometrial Stromal Tumor

s Kathy

Welcome to Cancer Concerns.
I hope you look down at our current postings and find the posting from Lenaseipel titled: Done Lurkin.
She too has ESS.
I have a dear friend in my gyn cancer support with the same diagnosis. She was diagnosed about three years ago.
I, like Lori, am wondering why no surgery until July?
That is almost half a year away.
Please keep in touch.

Unread 02-23-2003, 01:56 PM
Endometrial Stromal Tumor


Well, you may be half way around the other side of the world from me, but suddenly, I don't feel quite so isolated in my concerns. I am having a radical hysterectomy on 5th March because they suspect ESS. They are hoping that they will be wrong and save my ovaries but I have been schooled up on the additional things that they will have to do if the frozen section comes up looking like ESS during surgery (remove ovaries, staging (lymph & tissue sampling), appendectomy (apparently this can sometimes get in the way)). I am lucky in that they seem to have found this before going in with the knife and my surgery is being done by a gyn/oncologist. Quiet often it appears that the tumour is found after hyster (it is very difficult to detect, and as you say very rare) usually by a gyn and then you have to go through surgery again with a gyn/oncologist to take lymph nodes etc. Feel free to email me, you'll find this site a great support network and there is lots of information out there even though this tumour is rare. It is scary initially but my feeling is that you need to be as informed as you can so that you can prepare yourself and not get so many awful surprises.

Lena :
Unread 02-23-2003, 08:44 PM
Endometrial Stromal Tumor

Hi Kathy,

I'm glad you wrote back. I live in Martinsville, Virginia. Not too far from Maryland. Yes, my Oncologist said that the progesterone is a new treatment. He said there are some studies that show it keeps the cancer from growing, and that it does in fact shrink this tumor should it recur. I have had anxiety attacks since I was 13 years old, unfortunately, megace can make them return in full force. I am on Paxil, and Clonopin for my panic attacks, and I believe that has kept my mood on an even keel. I asked him flat out, "Do you think I should take it?" and he said it probably would not matter. So, I opted to go without . The important thing is not to take Estrogen. He told me the same thing, that after 2-3 years I can go to once yearly CAT Scans. He also said if it should recur, most likely it is within the first 2 years and in the pelvis or lungs. I'm sorry you have to go back and have surgery. My Gyn removed my ovaries, and since my tumor had almost no mitotic activity, they did not recommend removing the lymph nodes because the body has hundreds of lymph nodes and how would you know which ones to remove? Hence the scans, you can get a great cut dimension of the nodes.
Are you going to John's Hopkins? I noticed some women have radiation, will you have that? That was not recommended in my case either. The pathologist who diagnosed me, wrote the text book on the stromal tumors. He recommended my Gyn/Onc and they conferred, so I assume I'm being treated correctly. That is what is frustrating about this type of Cancer, it is so rare they can't always give you the answers you want to hear! Oh, one other thing. I hope you do go to the site that Karen and I recommended, but just remember that the site is for all stages of ESS. Low grade and High grade. Mine is low grade. It sounds as if yours is as well if they feel comfortable waiting until July. Some of the high grade stuff is scary , but knowledge is power.
Unread 02-24-2003, 04:31 PM

Well..I'm getting to use the initials of my condition. Maybe I'm learning something

Thank you all for responding to my initial posting. I got the impression from the oncologist that he's waiting to do the surgery because there didn't seem to be a reason to rush since I haven't had other symptoms and the CAT scan came out fine. The appendectomy thing sounds interesting. It's something he didn't bring up in our meeting. He said he's going to do two incisions on either side of my vertical C-section scar. (just call me "Scar Belly"). I'm going to ask him about the lymph node remark about there being so many..just do the CAT scan. I wish there was a static group hug I could send to all of you.

Lena, best wishes to you..Karenann..thank you..Lori..almost a neighbor! Keep in touch and let me know how you all are doing..and I'll do the same.


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