High grade ESS

Hi Nzq21p I am so sorry to hear about your recent diagnoses, I know how scary this will be for you. ESS is a very rare sarcoma, and there are only a handful of us on here who have this disease, mine is low grade, but I have been living with it since 2009. 
If you click on my profile name or picture it will take you to my profile page where you can read my journey.

Have you had a hysterectomy? ESS is usually hormone dependent so if you are HRT I would discuss this with your doctor. Hopefully the scan won’t be too long for you to wait x 

Thank you for your reply..no, I was not on any HRT.. menopausal last 10yrs, am 59 now. 

Have they been able to tell you anything yet apart from it being ESS. 

Hi, sorry to hear about your recent diagnosis. I have low grade ESS. Diagnosed Nov 2022 after having a total hysterectomy to remove a large “fibroid” that was causing anemia. They left my ovaries since they thought hey we’re just removing a fibroid. The fibroid turned out to be ESS.  I had some nodes on my lungs they watched for a year. Then in December 2023 I had a lung wedge resection to remove and biopsy a couple nodes. It was metastatic.
This March I had my ovaries removed and started Letrozole. Latest 3 month scan looked good. Nothing new showed up and the remaining lung nodules haven’t gotten bigger since starting the meds. I was so relieved to have some good news.

I have been struggling the last 6 months with chest and back pain after the lung surgery. I kept getting fluid built up and had to have it drained twice. The Thoracic surgeon couldn’t figure out why I was having such trouble and kept giving me more and more pain meds. His only options were diagnostic surgery or more pain meds. Once I had my last scan and it didn’t show any new nodes, he decided to start a steroid taper. Him and my Oncologist thought it would help with the pain and inflammation. I was hopeful. About halfway through my lymph nodes in my upper body became swollen and the inflammation was so much worse.

I have been struggling for a while now and it seemed like the clouds were never going to clear. Each time I got a new path or treatment I would think I was making progress but then another problem would pop up. I was starting to lose hope of ever feeling better.  

Last month I finally met with my Rheumatologist and he knew immediately that it was because of my RA. Apparently the trauma from the last two surgeries sent my RA into over drive and he said it wouldn’t “shut off” until he gave me something to help. He started me on Humira and it has helped a lot. I was hopeful again and thinking I might finally start getting my life back. 

But then last week my Rheumatologist’s office called to follow up after blood work to tell me my iron is still tanking. He wants me to start iron infusions again and go back to the gastroenterologist for an endoscopy and colonoscopy to look for cancer or ulcers or anything else that can cause blood loss. That is how all of this started!

I was so devastated to get that call. It felt like I was starting back at square one. 

I have been really struggling. Luckily my job has allowed me to work from home the last few months while I sort out the chest and back pain. But I have turned into a hermit and have hardly left my house all summer. I have 4 beautiful grandbabies that are too exhausting lately to play and visit with. I am sick of this!

Sorry to not be a ray of sunshine. I know it is hard to get a cancer diagnosis out of nowhere. We are all here for you. Please feel free to rant if needed. Obviously I needed to but don’t even realize it until I started typing. 

Wow..that's a lot to deal for you.. I thought low grade is less invasive.. I am even more worried now because mine is high grade.. I wanted to try water fasting and intermittent fasting to give it a try.. I am already underweight and can't afford to lose anymore with fasting 

 Nzq21p why are you considering fasting? 

Ok, there is no proof of this, and unfortunately you will see a lot of un truths online regarding curing cancer. It is best to stick to what the medical team tell you, as they are the experts in their field. It is more important at the moment to eat a healthy diet and to keep your weight up in case you need chemo or another treatment which may effect your weight in the future. Cancer treatment can be gruelling and you need good strength to help you through, so losing weight at this time may not be a good idea. 

Yeah, totally understand.. but just want to give it a try.. I don't think just 2-day water fast will cause too much damage even if it doesn't help.. thank you for your kind response..I appreciate that..

Have you got a date for your ct scan yet ? 

Sorry, didn’t mean to worry you more than you already are. I have other health issues that have compounded the problem. 

For me, taking it one day at a time and one hurdle at a time has made it more manageable. 

Researching online can be good and bad. So be careful not to go down a rabbit hole. 

I found some studies that made me feel more confident about my treatment plan so that was helpful.