Hello, my name is Nancy and I received the diagnosis of ESS on December 20, 2013.  I had a total hysterectomy as treatment for fibroids.  During surgery, they found more than anticipated.  The pathology report confirmed ESS.  I am still waiting for my next appointment to understand staging, options, and much of what you have already lived through. 

I have spent the last couple of weeks reading everything I can on ESS.  I understand that it is considered rare so finding others who have gone through the experience is a true gift. 

A bit about myself - a mom of 4 great adults, and nanna to 3 beautiful grand daughters.  My husband has been very caring but does not want to talk about this until we have more information.  Maybe that is normal, but I find I do need to talk about it.  I was premenopausal at the time of surgery, and have no family history of cancer.  This news was very much a surprise.

Looking forward to learning more about your journey.

Nancy

My Mum has this cancer. She also found out after having a hysterectomy. It was a shock! That was in 2012, they found that one of her lymph nodes was enlarged so they took it out as precautionary but found some cancer in it. She ended up doing 6 months of chemo which was great and she was in remission for 18 months. Its since come back though and had surgery and it was a long one and she has started chemo. Hopefully it works again. Her cancer is not hormone responsive apparantely. Not sure if anyone else is in this position. Its so rare there isn't anyone we can find who has this. But reading of people that are living with it is a great relief!

Hi

I was recently diagnosed with ESS, even though I had it 8 years ago (but it was missed) I am struggling to come to terms with how a little tablet will manage my cancer as my tumour is inoperable and it has spread to other areas, I would love to hear about how you ladies are being treated for ESS and how you are day to day, what is normal!!! Fingers crossed xxx

Hi Nicola47

Just re-registerered on the site.  I had ESS in July 2012 and am currently no evidence of disease. Hope you are coping with your ESS and happy to discuss anytime.

Hard to believe my diagnosis was over 2 years ago.  After surgery, went through radiation as my primary treatment.  Follow up was a CT scan every 3 months found metastic cancer in my lungs.  the nodules are small and very slow growing, but little they can do in the way of treatment.  I felt i was always getting over the last appointment or getting ready for the next one, so we have pushed the follow up appointments out to 6 months.  My outlook is positive, my energy is fairly good, but i am now on inhalers to help with my lungs.  

I have 3 beautiful little grand daughters who give me a reason every day to believe I can fight this.  

Hi dixie62 

Glad to hear you are feeling positive and enjoying your wonderful granddaughters.  Hopefully your lung nodules will continue to be slow growing.

I'm 3.5 years since diagnosis and don't know where the time has gone. Managing to put it to the back of my mind most of the time, but this is my check up week, so that always brings it back.

ms2016

I always find that week or so before the appointment the hardest to keep my focus. Please let me know how you make out with the appointment. We will cheer your good news together!  Keeping my fingers crossed for good luck!

Hello again everyone. I posted the first time in June of 2012, two months after my diagnosis. It was a very rough time. I am very happy to say that I am still in remission, and I feel great. Last summer I backpacked across the Rocky Mountain National Park, 23 miles over the contintental divide. We peaked a mountain that is 12,500 feet above sea level. I am not bragging, I am letting all you new people know that you can/will feel normal again.

I have taken a much different route for my treatment then most, actually, all of you. I was very fortunate and had my uterus removed in one piece, so I didn't have random cancer cells chopped up in my abdomin. I actually had two types of cancer in my tumor, ESS and UTROSCT. Even when I went to MDA, no research or knowledge advice on how to treat it. I was the second patient MDA had ever seen with the UTROSCT. Of course they suggested menopause, because they have to suggest something.

That is when I started doing my job. I am a professor, and know how to find good research. So while I tried menopasue, I read everything I could find on hormone based cancers. The more I read about the importance of hormones, the more I realized that for myself, being with out hormones was worse then a reoccurance. I know you probably think I am crazy! My family did! My family doctor did not. She helped me by suggesting a genetics test that determines how you process hormones. The good and bad. My genes do not allow my body to process the over abundance of the bad estrogen, which builds up in my system, and then create cancer cells. Simple answer.... Control the bad estrogen, keep hormones in balance. I started taking bio-identical hormones made from yams. I take progestrone, estogen and testostrone. They have saved my life is so many ways.

Are you rolling your eyes and thinking I am a time bomb? It is okay. I have kept quiet about this for years because I know it is dangerous. I made a choice to choose quantitiy over quality. And I work very hard at staying clean. I eat almost no preservatives. Yes, I eat meat, I try to eat grass fed organic. I eat carbs, but only in whole form, quinoa, rice, beans. I eat lots of veggies and fruit. I drink bottles and bottles of wine! LOL! And I eat big fat greasey hamburgers and french fries occasionally. Oddly, I eat very little sugar, it is because when you eliminate sugar from your diet you stop craving it. 

The other major thing I have done is to eliminate as much stress as possible. I quite my school administration job, dropping my income in half. This serverly upset my husband, so I got rid of him too. I know that sounds harsh, but there were other issues, trust me. Last summer I took a job where  I teach and work at a research university remote. I only have this job by the grace of the Father. He has truly blessed me. When I am in a stresful situation, I realize that I am probably building up bad estrogen and do everything I can to try to control the stress. I exercies on a regualr basis, spend lots of time outside. My latest battle is learning to not sleep next to my phone and I would love to eliminate Facebook. 

I also take very good vitaimins, I pay dearly for them, but I have not been sick since I started three years ago. I must have a pretty strong immune system if I can fight of buggs after working in a public school!!! I suppliment with Tumeric, Dim, Calcium, magnesium and Vitamin D. 

I don't think any of you should follow in my footsteps. Every year when I get my scans, I am worried. But over the last 3.5 years, I have gotten my son through high school, almost, and have been active and involved. No hormones and mediction was not the path for me. I wanted to continue to be active. On menopause I was lethargic, in pain, depressed and exhausted. I couldn't live that way. I  often had thoughts of taking my life, and that scared me more then a reoccurance ever will.

I just want you to know what I did. Knowledge is power. Each of you will find your own way dealing with this *** disease. Love you all, and I pray for you every day.