Anyone else been diagnosed with LGESS.?

Hi kindheart, I have LGESS. There are not many of us on the site, there have only been a couple of others in the years I have been on here. 

I have been living with this since 2009, then wrongly put on HRT after a hysterectomy, so unfortunately in 2014 I was told it was back in my lungs. I am currently on hormone treatment, anastrozole and zoledex because I still have one ovary, and my tumours are stable. 

You can read all of my journey if you click on my profile picture and go to my profile page. Feel free to ask me any questions x 

Hi there Chelle

Nice to hear from you, and thankyou for sharing your story. You've been through a hell of a lot.

A little about me and my current journey. I'm 49 and last May I had my old coil removed and a new one fitted, within a few weeks I started to get bilateral pelvic pain, GP sent me off for a scan where it revealed that I had a fibroid and a cyst on my Right ovary, subsequently I was referred to a Gynaecologist. It was decided to do a bilateral Salpingo Oophorectomy, basically both tubes and ovaries removed.  I had this done in January this year and put me straight into menopause. They left my coil in and I started on HRT. Biopsies of my right ovary were sent off for histology where it was found that I had unusual cells indicative of ? Low grade sarcoma  ?Endometriosis and I need a full body CT scan. Initially it showed a clot in my main artery and I would need to go onto blood thinners, so I'm now on 18,000 units of Dalteparin. A week later I had a phone call to say my Gynaecologist wanted to see me and I should bring someone.  We'll, that sent alarm bells ringing, I've been a Nursing Assistant in the NHS for 31 years!

So my partner and I went along, well my whole world shattered, I was told that I had lymph nodes in my abdo cavity and that I had a lesion on my lung and it doesn't look great! What the hell does that mean?? I looked at my partner and said 'am I going to die??' We chatted to my Gynaecologist, he couldn't give any realistic answers!  I had my coil out there and then and immediately stopped HRT. I was in bits trying to re evaluate my life! I had been discussed at various MDT's at different hospitals and my local CNS said it would probably be chemo! I am now under the care of the sarcoma team at The Royal Marsden in London.  I had an appointment 2 weeks ago. I was feeling every emotion going!

I  was told that I have a low grade endometrial stromal sarcoma, they didn't know how long it had been there. I asked about the lymph nodes, so it has spread to my retroperitoneal lymph nodes, I asked would these be removed, she said not necessarily.  I asked about the lesion on my lung, Consultant said that this was a tiny smooth rounded spot and that it shouldn't cause symptoms. They want to do another CT scan to get updated pictures and after that they want to start me on Letrozole and see what happens, I don't need Chemo or a hysterectomy as yet, and that I could go back to work.

So I came out of there a little more positive! I'm signed off work til mid June. I'm to take Dalteparin for the next 6 months.

My partner has been amazing.  My only symptom is that my joints are starting to ache, I guess that this is because I have a lack of hormones.

Anyway, I've rambled on enough.  We are both a rarity. It would be great to keep in touch for support, if you would like. I'm still trying to get my head around it all.

Take care for now.

Annelise

Hi Annelise, because LGESS is so rare, it is so important to get a consultant that has knowledge of it. It sounds like now you are in good hands at the Marsden.  I am lucky my consultant has treated LGESS before, although I am only her 2nd patient, she has mirrored my treatment around her other patient. 

The most important thing is to be hormone aware, and it sounds like your consultant is on top of that. It is good to know you have had both ovaries removed, and are starting letrozole. Sorry to say the joint pain is a side effect of lack of hormones. I also suffer from hot flushes and brain fog.  I have also gained a lot of weight, but there is good news! LGESS is treatable. I am just coming up to 13 years since  my first diagnoses. 

Xx 

Hi, is this the one in a million club lol.

Short version I was diagnosed LGESS stage 1b 8 weeks after having subtotal abdominal hysterectomy & bilateral salpingo oophorectomy on 13th July 2021. It was meant to be a TAH but the surgeon felt that my cervix was too close to my ureta, and because all biopsies and smears had showed normal she felt it safer to leave it in

After the diagnosis I got myself referred to the Christie in Manchester and they recommended robotic surgery to remove it, which I had done 5 weeks ago so I am still recovering from that. I have the surgeon and my GP doing some research on HRT for me as the joint pain, which was just one of the monthly reasons I wanted the hysterectomy, is continuous and severe now and I am struggling to find something that helps. So it will be nice to share experiences here if that's ok .

Chris

Hi Chris, I am so sorry to hear you also have LGESS, and was shocked when I woke up to your message this morning. 3 of us on one post……this has never happened before. 

When I had my hysterectomy back in 2009, they left one ovary behind, as they did not know at the time I had cancer.  My LGESS was hidden in the wall of the womb, so they didn’t realise it was there until after the hysterectomy. I was told I did not need any further treatment, and I was put on HRT. That was the worst thing they could of done. The LGESS feeds off oestrogen, and my cancer spread to my lungs. I still have that one ovary (I wish I didn’t ) so I have zoledex injections to shut the ovary off. The side effects of that alongside the anastrozole make my joints so painful! In the evenings I really struggle to get up off the sofa because my joints have seized up. So I do know what you are feeling, but for our cancer hormones are the devil, and we have to do everything to remove them from our body, so HRT is not an option. 

Let us know how you get on with the GP. I take it that as all the LGESS was removed you do not need any further treatment ? Xx 

Hi all, I might be adding to the record here as I too have just been diagnosed with LGESS (March 2022), 6 weeks after my TAH. My story is very similar to many of yours in that they did not know about it until I had the surgery. I had been told my bleeding and pain was as a result of anemomyosis and the only real cure was hysterectomy. After alot it soul searching I decided to go ahead with the op and what a relief I did, however if I'd known about the cancer I would have got them to take the ovaries aswell. I was so keen to keep them I wish they'd just taken the buggers now. I am waiting for further surgery now to have my ovaries, omentum and appendix removed and they want to do lymph sampling. They said they can't give me a stage until they do the further surgery. 

I was so relieved when they brought my surgery forward to this coming Monday (23rd May) because I just want my ovaries out and want to understand more about the staging, but I have only gone and got Covid this week so no surgery for me for the next 7 weeks. Another challenge I am facing is I am due to get married abroad on 2nd August. I was hoping I could have had the surgery and the wedding would have been a nice ending to it all, but I may now even have to delay the surgery further until after the wedding! I'm interested to hear about the hormone blockers as I may request if I can take these until I have my surgery.

Have any of you also been suggested to have your omentum removed? I'd never even heard of it until now?

Wishing you all the best in your journeys, we are all in it together ️

Thanks Roz

Hi Roz, sorry you find yourself here too! It is a good idea to get the ovaries removed.  Have you got tumours on the omentum and appendix? 

Sorry to hear you have covid which has put the surgery back. It sounds like timing is going to be an issue with a wedding as well! That is exciting though! I think I would have the wedding first, I would ask your oncologist, they will tell you if they think it is ok to put off until after the wedding. Xx 

Hi Chelle. No, not that I know of, although I never feel like I get the full story and always feel like I am digging all the time and then I get told another piece of information. They do seem keen to remove the omentum though and they said as a side they usually would remove the appendix aswell. I got a copy of my ct results and there doesn't seem to be mention of anything showing in these areas, but I was told that the ct will only large masses and not the smaller cells xx

I am so sorry Shakk, I just assumed that was why they were removing the omentum, but sounds like this is a preventative measure. 

I am sorry that you feel that things are being kept from you. Every time you have a consultation with your oncologist, he will write to your GP to tell him what was discussed. This includes all of your test results and findings. You can ask your oncologist to send you a copy of your GP’s letters in future so you know exactly what is going on. I don’t know if your hospital has the my medical site? This is something like the patient access that you get online. My medical is where all of your letters and appointments are downloaded. When I was able to to access my medical, I was able to read all of my medical letters to and from my GP dating back to 2009. This is when I discovered for the first time that I should never of been given HRT. Letters from my GP to my consultant discussing why this ever happened. So be prepared if you do download the my medical, there may be things you may not want to read.

Is your consultant a specialised sarcoma doctor? The first 5 years of my diagnoses, I was under the care of a gynae consultant,  which is why I was not treated correctly. It was only when my cancer metastasised to my lungs, that I was transferred to a sarcoma consultant.

xx 

Hi Chelle

I believe I'm in the right hands with the Marsden, this is their speciality. I have a CT scan next week which makes me nervous, but it will be what it will be.

Your words are so positive, 13 years, and yes, it is treatable.

It's good to share our stories, thankyou

xx