Any low grade endometrial stromal sarcoma survivors out there?

Hi Valita and welcome to the community. My wife's cancer is fairly similar in that it is believed to have originated in a fibroid but her diagnosis is Leiomyosarcoma - always fun when she sees a locum GP and they ask her to spell it!

Janice had a complication - pyometra - and her hysterectomy was done as an emergency but they saved one ovary. I ended up spending the best part of a month with her in the gynae wards so there is rather little I did not hear of in my time there. They diagnosed LMS and now they give her tablets to stop her hormones, She had two separate lots of chemotherapy and the second appears to have made her cancer stable and she has been like that for six years. The mets are scattered in both lungs.

Many people live with cancer for a very long time, Janice now is only seen by the oncology team about once a year and has come to a position of living with cancer - just nobody call her brave!

Back pain I can relate to - as I was diagnosed with ankylosing spondylitis; by some degree of fate one of the leading centres for my issue is just over the road from one of the leading centres for Janice's sarcoma. The real plus for my AS is good physiotherapy as the worst thing we can do is stop moving - sometimes I avoid sitting so I can keep moving as that does help me.

Hope you find some relief to the pain, I know sometimes I can need something with a bit more power though have to be careful as the side effects can be almost as much of a problem - such a balancing act at times.

<<hugs>>

Steve

Hi Steve, so your wife was diagnosed several years ago but she's still going strong, still alive... Well, that's great! Yes, I've read online that many types of cancer are not so lethal anymore like in the olden days, they can be sort of managed like a chronic disease for many many years, they may not (yet) be curable but they are treatable. Ok,ok...

Mmm, but may I ask you about her quality of life? Does she manage to have a "normal" life (socialising, working, practising sports etc)?

The first thing I started doing when I was diagnosed with incurable cancer, stage 4b,  is death admin, only to discover that no, I cannot touch my private pension unless I'm permanently unable to go back to work or I've got less than 12 months to live, and my onco says this (mercifully) is not the case... And since I'm mobile and I can still do all my daily tasks (just more slowly and with great difficulty due to back pain) I think I won't qualify for PIP. If I get no private pension and no PIP basically it means that I will have to go back to work as usual with stage 4 cancer and a beastly pain in the back. Right now I cannot see how things can be "as before" again for me, I really cannot see it! 

I guess what I'm trying to say is I'm trying to ask you what my life will look like but I know you cannot answer this question.

After the diagnosis I've been on a rollercoaster of emotions... Some days I want to travel to Switzerland to get assisted suicide and some other days I'm so eager to tick off things from my bucket list, for example launching a small business and learn how to surf.

Regarding the back pain I'm supposed to get help from the holistic/complementary therapy team at my hospital (massage, aromatherapy, acupuncture etc) but so far - "due to Covid" - I've just been able to get chats over the phone and Youtube video links with some gentle yoga. No way to get any manipulation or massage "due to Covid". But guess what, if you fork out and go privately there's no Covid, I'm seeing an osteopath in a clinic tomorrow.

Take care Steve!

Val

Janice was never much for playing sport but she walks everywhere generally with a big sholley trolley. We would normally have two holidays a year at Butlins (but covid...) and we have been on holiday to Paris and Glasgow too.

What perhaps slowed her down some was that one round of her chemo was rather too successful and managed to end up collapsing a lung - now that did slow her to a crawl but it seems like they have managed to fix that now.

Hope the clinic appointment goes well.

<<hugs>>

Steve

Gosh Steve, you know, I spoke to another lady in the forum who's got LGESS (low grade endometrial stromal sarcoma) like me and she too had a lung collapse! She said it was super painful, she nearly fainted due to the pain and knew instantly what was going on.

My onco said no chemo and no radio for me for the time being. And he said to the surgeon who did my hysterectomy that debulking (removing as much tumour as possible) wasn't necessary either so I kept all my extensive lymph system metastases in the pelvis, lungs and pericardial area.

What I'll do is as soon as I have a recurrence (probably 6-9 month after the hysterectomy) I'll start taking hormone inhibitors, and that's it I understand.

My NHS physio - since massage and manipulation are not avaiable now due to you know what -  just wants to give me more drugs! I'm already taking Paracetamol, Naproxene, MST (slow release Morphine pills) and last time we spoke she wanted to add methadone! Now, methadone in my mind is something super strong that you give to junkies trying to quit heroin! I don't want more drugs to dull down the pain, I want to fix my back pain and heal!

Today I saw a private osteopath in a clinic and I feel better already. She gave me some sort of deep tissue massage. Boy, relaxing it was not, actually I felt a bit sore after it but now I'm feeling better already. 
She said I'm very stiff, probably because during 6 weeks after hysterectomy I did not do much sport, I couldn't! And also the heavy, painful periods I had for several months before the operation must have inflamed some nerves. I'd like to think with this osteopath I'm on a path to healing now... Fingers crossed.

Take care Steve!

Val

Hi Valita,  I also have Stage IVB ESS. I was first diagnosed in 1999 when I was 45. They did a complete hysterectomy and checked my lymph nodes. I was treated with Megace and radiation both external and internal, Brachytherapy.I had follow-up for about ten years. I began having some issues again in 2020. I have a large inoperable mass in my pelvic area as well as iliac lymph nodes and multiple lung nodules. They believe it is LG ESS although it is behaving more like HG in some areas. It is weakly positive for ER and PR so I have been started on Letrozole. My prognosis is that I will most likely live for years. Because ESS is so rare I would recommend that you see a Sarcoma Specialist. I believe everyone I've talked to in your situation is having hormone therapy.  

I was really worried after my initial diagnosis knowing it has a high rate of recurrence that it would come back but I had an interval of almost 22 years before that happened. The group has really helped too. There are women on there who have been Stage IVb for 10-15 years now. If they can do it so can I . In fact as soon as I learn whether my cancer is responding to Letrozole I plan to have knee replacement as my pain and immobility is the main thing slowing me down. Good Luck to you. 

Hi Kittyc21, thanks so much for getting in touch and shedding some light on what can possibly lie ahead for a woman with LGESS. 

Wow, you have my very same medical condition but your oncologist seems to have suggested a very different therapy plan. I'm full of metastases (lungs, pelvis, pericardial area) but I'm not doing any radio, Brachitherapy or chemo for the time being, I'll just start taking Aromatase inhibitors when I have a recurrence. My onco said my tumour is very sensitive to oestrogen, he did not mention PR but I'll ask him.

Yes, I'm seeing a sarcoma specialist, I feel lucky to live in London where we have 2 hospitals with sarcoma units.

I have plenty of questions for you if you don't mind.

- How come you've developed a large inoperable mass in your pelvic area? I would have thought that by doing regular CT scans you should be able somehow to keep a lid on it (maybe by resecting/ doing proton therapy etc).

- How long have you been living with low grade endometrial stromal sarcoma, stage IVb, is it 22 years?

- Was it IVb when it was first diagnosed? (That's my case)

- Could you please tell me a bit more about your pain/aches and quality of life during all these years?
I'd like to launch a small business but I really don't know if I'll have the energy to do it.

At the moment I'm feeling anxious, I'm very tired + I've still got some back pain which may be due to the osteoporosis they found in my spine (I'm "only" 40 and had hysterectomy only 4 months ago). I have an appointment with a metabolic doctor mid March to try and understand why I developed osteoporosis so early.

Looking forward to hearing from you, take care!

Janice has had 6 lung collapses so far. The last one she rang 999 and when the call handler asked what the problem the conversation went something like this "What is the problem?" - "I think I have a pneumothorax" - "What makes you think that madam?" - "It's my sixth" - "The ambulance is on it's way".

Janice has now had Surgical Pleurodesis on both lungs and fingers crossed no recurrences since. She is one tough lady.

Wow, 6 lung collapses... yes Steve, she's a tough lady indeed. Again, I'm wondering, what are the CT scans for? They don't seem to enable any preventative intervention?! 

In Janice's they use the CT scans to check to see how her mets are or are not progessing. CT scans are of course x-rays and so there should be a good reason to do them but the dose rate is low and the information is really high quality.

At one point with Janice they were doing fairly frequent PET-CT scans and I questioned this as the dose is quite a bit higher especially when the consultant had said that the PET-CT did not really offer any better information in her case to an ordinary CT - and the difficulty was much higher, not least in getting the tracer in to her as some of her veins seem to go in to hiding whenever there is a needle in the room.

If you have any questions about when the oncologists are getting from the CT scans though do ask - many will be happy to explain and are often really encouraged to see people taking an interest in their treatment, however sometimes because they do this sort of thing every day it is easy for some to forget that it is new to every patient.

<<hugs>>

Steve

Hi Valita. I was originally diagnosed with stage Ic 1999 (old system) only had CTs for 10 years. Hence it had spread drastically by the time it was discovered in fall of 2020. My understanding from my Sarcoma specialist is best treatment after surgery is Aromatase Inhibitor. Chemo and radiation are less effective. My Oncologist says use AI as long as it works then move on to something else. I'm no longer a candidate for more radiation unless it is very limited due to my earlier radiation. It is probably good that you keep that in your tool box for later.

The surgical Oncologist says if lung mets disappear and pelvic tumors shrink substantially I would be a candidate for surgery but that would entail having my bladder and rectum removed in addition to my vagina. As long as my bladder and rectum continue to work I will not be doing that.

I am 67 and biggest symptom is lack of energy and fatigue. Not sure if it is from the cancer but I suspect it is at least partially due to it. I don't have much pain except in my knees which are bone on bone and need replacing. I don't take anything for pain. I really can't stand pain medication. The only symptom I have noticed so far from AI is occasional hot flashes. I am waiting to see if the AI works then I will go ahead with one knee replacement.

I was much more worried the first time around when I was 45 and still had kids at home. . I think I finally came to terms with the possibility of recurrence and death then went 22 years without knowing about recurrence. Now I'm old and have many medical issues. My kids are grown and my husband has passed. I am very grateful for those 22 years I had. I don't think I will be doing anything drastic to save myself. I will take AI for as long as it works (I suspect that will be years) then decide if I am willing to do anything else. You take care of yourself. You probably feel much worse than I do because you are just 4 months out from hysterectomy and diagnosis plus you are so young. I remember that being difficult and yes I was extremely tired especially after radiation. They then discovered I had a blood issue and was given 2 iron infusions which helped. I don't think I would jump into a business venture until you are really healed. I believe cancer is stress related. Take care of yourself. I'm willing to answer any questions you have.