Any low grade endometrial stromal sarcoma survivors out there?

Hi Kittyc21, thanks again for sharing your experience and taking the time to reply. 

You're so lucky to have kids! I shouldn't say it but I envy you a bit, I won't be able to be a mum, at least not a biological mum. I left if a bit late, I didn't have a suitable, stable partner, you know, and then cancer struck and I had to have my uterus and ovaries removed. I explored the option of freezing my eggs but in my case the chances of success were very slim and I did not want to delay the hysterectomy as I was really in a bad shape, was really in a lot of pain.

What makes you think cancer is stress related? Sometimes I think the same, I confess, even if it's probably completely evidence-debased. I think that I brought this on myself by being too pessimistic, dissatisfied with my career and demanding towards myself but I've read somewhere (possibly in "Lifestyle And Cancer" by professor Robert Thomas)  that studies show even people with the sunniest disposition sadly get this disease...

I had a CT scan on Feb 4th and I saw my specialist today to discuss the results. He said everything looks very good, my tumors are shrinking, no need to start taking Aromatase Inhibitors for the time being. Next CT scan in August.

Boy, are CT scans terrifying! I was crying and shaking like a leaf, luckily the radiographer was super nice and understanding, he held my hand... I'll have to get used to them as CT scans will be the new normal...

Some days I'm experiencing extreme fatigue too and in my case it has nothing to do with chemo, radio, brachitherapy, Aromatase Inhibitors etc because I still haven't done any of that, my specialist says it's due to menopause. I've started taking some magnesium supplements and black cohosh tea, I hope they're going to boost my energy levels.

Take care and enjoy your weekend Kitty!

Hi Valita, I have a question.  Without treatment why does your doctor think the mets are shrinking? Maybe less OE from hysterectomy? Did you have bleeding problems before hysterectomy?

I too thought the scans were scary which is probably why I stopped them 10 years out. All mine were negative the first time around. I was different from you as I was NED after surgery but still really scared as they told me over 50% come back usually in the lungs. I was convinced it would come back. It was a different time and ESS was so rare and little was known. Progesterone treatment was new and my doctors thought it would quit working after a couple of years. In reality they know now it can be effective for long periods of time. They told me research did not indicate that radiation would extend life. I guess I did it because I felt I was doing something. The doctors tell me now that radiation might be why I went 22 years before recurrence. Either way it is one less tool in my toolbox now. They think 22 years is good but as slow growing as it is I've probably had it for years now. 

I lost my dad from lung cancer a few years earlier. He died three months from diagnosis. I thought I would die too. In fact they told me I had a 90% chance of living for 5 years and a 20% chance of living for 10. Now I know women, through a support system, who have had multiple recurrences and are still alive 30 years out. I think I will live for years now despite being stage IV and inoperable.

I guess the stress thing has to due with some of my beliefs about holistic medicine. My dad had been laid off due to the economy for the first time in his life before he got sick. He belonged to a union and was looking at 5 years before he would be back to the top of the list to be hired again. My husband also got a rare autoimmune disease after he was laid off at age 63. Work was also the most important part of his life. I'm a retired counselor and saw many others go through this pattern of periods of high stress occurring before significant health problems. I also have friends in my field who believed the same and we talked about it a lot. Bye for now.

Yes Kitty, since my cancer is very sensitive to oestrogen, hysterectomy with oophorectomy (= removing the ovaries) is a treatment in itself, it's not like I'm not doing anything at all, I've already started to starve the cancer and the scan I had a few days ago shows it's shrinking in the pelvis and cavitating in the lungs.

My sarcoma specialist said I'm not starting the aromatase inhibitors straight away because he wants to see how my cancer behaves + AI can give you several unpleasant side effects (water retention, weight gain, joint pain etc).

From what you say I gather that the various tools in the box (radio, chemo etc) are only effective once, for a limited period of time, is that what your specialist said?

I heard about proton therapy and foundation medicine too. A foreign specialist I spoke with over the phone said sadly there are no trials for my disease at my stage at the moment but she told me I can ask my sarcoma team in London to do foundation medicine.
I haven't understood very well what foundation medicine is and I forgot to mention it today when I saw my specialist, duh! I'm going to send an email to my specialist and enquire about it. If it can help me and/or future patients I'll certainly do it if I can.

Good night!

Hello, just found this thread. I have LGESS stage 1b recurrent. Had a hysterectomy in 2022 and that is when I was diagnosed. Then they found the lung nodules. Had a lung wedge resection Dec 2023 and it was the LGESS metastasized to my lungs. So I just had my ovaries removed two days ago along with some pelvic lymph nodes. Labs came back as consistent with my known LGESS. My oncologist is going to put me on the aromatase inhibitor, Letrozole. Now that you are three years out from your diagnosis how are you doing? Reading your post was oddly comforting to know that I am not alone. For being low grade, I certainly feel like it is moving fast and has moved all about. But my oncologist tells me “ the house is not on fire” and that many have lived with this for years. 

I Just had my ovary’s removed two days ago. Any suggestions for dealing with menopause symptoms? 

Hi Rebecca42, I'm doing ok-ish physically, where I'm struggling more is on the mental front. According to statistics my "poison ivy" is kind of due back soon and that is stressing me out... I don't know how it's mutating (will it become high-grade? I think over the years it may potentially) and how I will react to aromatase inhibitors when I start taking them.

Regarding menopause, obviously I have to stay well away from hormones as my cancer is very sensitive to oestrogen so no HRT for me. To be honest the only things I find helpful are sport (mainly yoga, swimming & jogging), healthy food and relax. My onco told me that physical exercise helps to shrink metastases and I'm really clinging on to that piece of advice. Sport is brilliant, it makes me feel great and has no nasty side effects. I try to do it 3 hours a week, it really  helps me cope with anxiety.

I struggled a lot especially with insomnia and mood swings the 1st year or so, now I'm doing much better. At the beginning I had to take sleeping pills quite often and antidepressants for a few months but I read sleeping pills increase the risk of dementia and antidepressants made me feel quite numb so I stopped taking that stuff as soon as I could. You'll be ok but the first few months you'll have a bit of a bumpy ride.

I'm learning things here: I thought you could only have a recurrence if your cancer had metastasised, I'm surprised to hear there is such a thing as stage 1b recurrent.

My original staging was 1B and it has metastasized to my lungs. My oncologist says that they do not re-stage your cancer, it is just considered recurrent. I don’t really understand how all the staging works because when I found out the lung nodules were metastatic, I thought it meant that it was now stage IV. I had lung nodules before they found the mass in my uterus that was LGESS. They just didn’t know it was metastatic LGESS when they did my staging because they had not biopsies it yet. It’s all confusing to me. 

Hey Rebecca and Valita! Stage 4B LGESS here!  I have Mets to both lungs; 8 in the left and 7 in the right.  I was diagnosed in 2020 and have been in letrozole since day #1. My tumors haven’t shrank BUT haven’t spread so that’s a blessing. The side effects to the letrozole were terrible at first!  I am finally working again and feel so much better. You girls take your time and do what you can. Love you!

Hi Valita  good to hear you are doing ok. I know it is hard, but please do not focus on the statistics, they are so outdated. Things have changed so much since I was first diagnosed in 2009. They told me back then I would only live for 5 years, they got that wrong! 

Keep up the good work with the exercise, this really does help with the low hormones. We need to keep our bones strong as lack of hormones can cause osteoporosis, and excercise can help to fight this. 

I am glad to hear that you are feeling better and that the tumors haven’t grown. I just got my prescription for Letrozole. Any advice for side effects that you dealt with? I am so grateful to have found this group. 

Do what you can, stay active and rest. If you’re tired, it’s ok to go to bed. Rotate Tylenol and ibuprofen regularly for the joint pain. If you need something to help you sleep, don’t be afraid to ask your doctor.

You are going to be just fine.