Endometrial Stromal Sarcoma

I would like to know if there is any treatment center that specializes in ess - low grade. I have three masses that I am being told are inoperable due to their location in my pelvis. I am currently on pravera and tamoxifan. I have tried Megace and it drove me to the point of suicide. Then I was put on depro alone. Was told that there was Arimedix. This just caused the masses to grow. Any help would be greatly appreciated.

I just came across your message while doing some online research on ESS. In the off chance that you have not yet had an answer to your message, I thought I'd respond. A treatment center for ESS would depend on the part of the country in which you live. I have ESS and I'm being treated at Dana Farber in Boston. Sloane Kettering in NY also has doctors that are familiar with the treatment of ESS. Did you know that there is an online forum for women with this disease? They are supportive and very knowledgeable as well. The address is endometrialstromalsarcoma@yahoogroups.com. I was diagnosed in 2002 and have had one recurrance. I've had 4 surgeries, the latest being a year ago this month. My scans have been clean since then, so I'm keeping my fingers crossed and taking it day by day. I've been on Megace since 2002 and while I absolutly detest what it does to me, it's keeping me alive. I wish you strength, courage, and good heart in your battle against ESS. Regards, Judy

I am a single mother of two boys. I underwent a radical hysterectomy in Sept 2005 to remove a low grade stage 1B ESS tumor. I am about to undergo another set of scans next week. I am trying to think positive but also very scared. I saw that you have had four surgeries. Was that for recurrences? Also, I am not any any special meds other than .3 Estrogen and 1.5 progesterone a day. Should I be asking my oncologist about tamoxifen or any other meds? I need some hope that I will be around to finish raising my boys. Thanks, Monica

Hi Monica, First, let me try to put your fears to rest. Because we have low grade ESS we are very lucky, (if you can call someone with CA lucky) and most of us will survive into our old age. High grade ESS is much more serious. I can certainly understand your fears. ESS is so rare that little is known about it, and you are so newly diagnosed I’m sure you are at a very vulnerable stage. I was a wreck for the first six months, thinking I was going to die and feeling terrified one minute and the next minute so angry I would shake. I still have those days occasionally! I’ve had only one recurrence so far, and the circumstances were unusual. In 1997 I had a total abdominal hysterectomy. The reason for the hysterectomy was the presence of a necrotic tumor in my endometrium. Pathology reports said the tumor was benign. I started taking Premarin for hot flashes and all the other goodies that come with surgically induced menopause. In 2000 I began having severe abdominal pain. Months later, after a diagnosis of constipation (it’s OK to laugh) and enduring pain off and on for what seemed like forever, I finally had an ultrasound and they discovered the mass. They did abdominal surgery and removed a tumor that was later diagnosed as ESS. Because ESS always begins in the endometrium, they knew that this abdominal mass was recurrence, as I hadn’t had an endometrium for 4 years. I live about 30 miles outside of Boston. Fortunately, I was accepted as a patient at Dana Farber in Boston, one of the finest cancer centers in the world. I met with an oncologist who was very knowledgeable about ESS and I started taking Megace and having scans every 3 months. Since then, they have found suspicious masses 3 times, thus the two other abdominal surgeries and one pulmonary wedge resection. In none of those instances was the growth malignant and they were found to be nothing more than cysts. Unfortunately, with our type of cancer surgery is the only treatment, as ESS does not respond to chemo or radiation. When a scan finds something it’s a tough call and in each instance with me they watched the suspicious areas until they felt that growth mandated surgery. The first thing my oncologist at Dana Farber said to me was to stop taking estrogen immediately. ESS is estrogen driven, so it’s the last thing we want in our systems. Megace and the various aromatase inhibitors that those of us with ESS take, are taken to block production of estrogen in our bodies. According to my doctor, the most likely reason for my recurrence was that I was taking estrogen. I was told not to even consume soy products, as that too facilitates the body’s production of estrogen. I am not going to second-guess your oncologist, and although I’ve done a lot research on this subject, I am not an expert by any means. I will however say that many oncologists are not familiar with ESS. I have no idea why you are taking estrogen, as that goes against all that I have learned over the past four years about this disease. Progesterone however is the basis of Megace and some other drugs, and many of us do take some form of it. My very inexpert advice to you would be to seek out an oncologist at a medical center that has a sarcoma center, or deals with it regularly. You can find listings of such centers online, and in my earlier email I mentioned a few. I don’t know where you live so it’s difficult for me advise on this. I believe that just as there are mediocre teachers and teachers who work miracles, and you can fill in the blanks with any other occupation as well, the same holds true for oncologists. They do not all have the same level of expertise. We have a very rare cancer that most physicians and many oncologists have never even heard of. The ESS online forum that I belong to (mentioned too in my earlier email) is extremely helpful and there are lots of ladies more knowledgeable than I on it. They can probably answer a lot of your questions. In fact, some doctors and researchers who deal with ESS monitor the forum because the members are as up-to-date as you can be on this illness. It’s our lives so we’d better be! I wish you the very best on your upcoming scan. The waiting for results phase is just awful (I call it scanxiety) so I know that will be hard for you. I’ll be sending many positive thoughts your way next week. Monica, I won’t tell you not to worry because I hate when people tell me that,(we have cancer, why shouldn’t we worry?,but I predict that you will not only be around to raise your boys, you will be around to play with your grandchildren. Sorry this message is so long. Best Regards, Judy

Judy, I don't know how to say enough thank you's for your note. This is honestly the first hopeful news I have heard about my condition. I live in Ormond Beach Florida and by chance there is a Gynecologic Oncologist here who has taken me on. His name is Kelly Molpus and he is also the chief of Oncology at our biggest hospital. I feel very lucky to have him here and as my doctor. He did tell me NO estrogen and I have been weening myself down since my hysterectomy. Everytime I go down a dose I go through weeks of horrible anxiety and irritability. My goal is to get off it entirely within the next few months. I am guessing it is the progesterone that is making me feel crazy all the time so I wonder if the megace is also hard to get adjusted too. I am going to ask my doctor about that medication on my next visit. He is recommending scans once a year but I have read that it should be more frequent. You are having scans twice a year? I have sort of made a deal with myself that if I have a recurrence I will seek out additional opinions at one of the centers that specializes in this. I hope it does not come to that. My biggest fear (besides dying)is getting sick and not being able to work to support my family. Your note has given me so much hope. I am deeply grateful that you would take the time. I will keep you in my prayers and send positive energy your way too!!! If it's ok I will send a note when I get my results and let you know how it comes out. Thanks so much, Smiling in Ormond Beach

Hi Monica, Absolutely! I would love to hear from you when you get your scan results. I’m so happy to learn that you are working with a good oncologist and are going off estrogen. I think you’ll find that your body will adjust over time. I was nearly 48 years old when I had my hysterectomy, so I probably wasn’t producing much estrogen at that point anyway. I have a feeling you’re a good deal younger than I am, and the sudden lack of estrogen would be more difficult to bear at your age. Megace is considered the gold standard drug for ESS, but it does cause mood swings, anxiety, weight gain (40 lbs. in 4 years for me) and most of all fatigue. I hate it and have pleaded with my doctor to let me try Letrozole or one of the other AI’s, but he doesn’t think those drugs have enough history. You’re right; most of us with ESS have scans more frequently than once a year, especially in the beginning. At Dana Farber they say one every 3 months for the first year, then if all of those are clear, every 6 months for the next 3 years and then once a year after that. Not everyone follows that standard off course, but I would not be comfortable with just an annual scan so early in the game. It must be so difficult to be the sole financial support of your family and have to worry about taking care of everyone. I hope you have supportive family or friends behind you, because it can make all the difference. My children are grown, and while they are there for me emotionally, my husband has been my rock through all this. I truly could not have done it without his care and support. Please keep me advised on how things are going for you, Monica, and even if you just need a little emotional support I’d be happy to lend an ear. I can send you my email address if you’d like, so the forum would be a little less public. Take care, Judy

My home e-mail is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- It has been a year since I had any scans so I am nervous about next week. But I am much more hopeful after reading your notes. I will be thinking of you. I am going to ask my oncologist about a scan every six months. He said we want to balance out watching for tumors with trying to minimize exposure to radiation which makes snese. My tumor was grade IB and only 3cm. No cancer in the lymph nodes or fluid wash they did. They checked over every inch of my insides during surgery which took over 4 hours. I was 41 when this all happened, 42 now. My boys are 12 and 15. Thanks again so much. Honestly this communication with you has been great. I will keep in touch. Monica

I just came upon your message and want to give you HOPE. I am a 24 1/2 yr survivor. I have low grade too. I took Megace and could not stay on it. My oncologist switched me to Femara/letrozole, an aromatase inhibitor. I am a patient at MSKCC in NYC for 13 years. I have had many recurrences and took the Femara for 2 1/2 years, off it for close to 2 years and had my lung mets grow again. I am back on it. Aromatase inhibitors like Femara, Arimidex and Aromasin(extemestane) work on keeping you stable of keep you from growing new ones. I was diagnosed when I was 46 years old so now you know how old I am. We are lucky that we have a pill as potent as this to keep our disease at bay. Get regular scans, stay with your oncologist. I had no scans for 11 years and did not know I had a recurrence after my hyst. It is better to be caught early while you are still operable. I have never had radiation or chemo as chemo wouldn't do anything for low grade sarcomas. There is a list on yahoo that you can join if you haven't already. Maybe you know and are on there now? You can learn a lot from that list. Best of luck. You will be a survivor. Ro

Hi I was diagnosed with ESS when I was forty-five. It's been seven years this month and so far no recurrences. I have an appointment tomorrow and feel like I've been holding my breath for a few days. I had the CT in December but missed my appointment due to bad roads. I live in North Dakota. Everything here is far apart so I see a doctor a hundred miles from home. I didn't reschedule so they called me and told me I need to come in right away. That has me a little worried I have to admit. I was stage IC with the tumor 80% of the way through the wall of the uterous. I had radiation and took Megace for three years. I was tired forever. They finally did Iron Infiltration and that helped some. I have slowly gotten stronger. At first I couldn't concentrate or keep it off my mind. I love to read and could not read a book for over four years. At first I hoped to live for five years and get my kids through high school. The farther I made it from the diagnosis the more hopeful I have become and now plan to be around for a long time. My doctor now tells me that reoccurances are very treatable which is more optimistic then my internet searches led me to believe when I was first diagnosed. Allow yourself to experience whatever it is you feel. Peace will come in time but it isn't something you can dictate. At least I couldn't. I hope you will be as fortunant as I have been.

endometrialstromalsarcoma@yahoogroups.com. Do join our group. There are about a hundred of us ESS ladies and we help each other out with treatments, medications, scans. You are very welcome to come aboard. SusanL ess group low grade ESS 1c or 2 1-2002 4 year survivor :-)