Leiomysarcoma

[Enigma52]

Anyone got/ had one of these cancers? It's my latest addition! In my pelvis, getting bigger, quite aggressive and I'm waiting on a CT and MRI.

I also have metastic BC in my lung.

Anyone?

I couldn't read and run. I have no personal or professional experience of these (I used to work in health care) but wanted you to know that someone has read your cry and is wishing you all the best x

Bumping for you.

That's so kind, Thankyou.
I was in a dark place yesterday when I posted. So fearful.

Today, a little better. I've joined a leiomysarcoma FB group and don't feel as alone.

😊

Xx

Hello @Enigma52 I was diagnosed with metastatic leiomyosarcoma in September, 2023. It started in a fibroid in my womb and spread through my bloodstream to close to my omentum and formed a tumour there.

I had the tumour near the omentum removed and also had a hysterectomy, everything was taken, womb, ovaries, fallopian tubes and cervix. My bowel was perforated during the hysterectomy and I developed sepsis and ended up with a stoma which I got reversed in October, 2024.

I had chemo (Doxorubicin) from February to June, 2024. I get CT scans every three months as leiomyosarcoma is a cancer often comes back. I’ve developed three bacterial infections in my abdomen since the stoma reversal in October and am currently in hospital with C Diff.

As leiomyosarcoma is such a rare cancer I find the Facebook groups really helpful as I’ve never met anyone in real life with this cancer. Sending hugs xxx

Dear @Berlinlover
Wow, it really is hideous isn't it.
Mine was mistaken for a fibroid in September 23. By November 24, I'd had a full hysterectomy, everything removed. Leiomysarcoma no.1.

Metastic breast cancer discovered at the same time. Thankfully, it is asleep right now thanks to the drugs.

Pelvis mass discovered September 24, although it wasn't reported until November 24! Biopsy revealed leiomysarcoma no.2.

To say I'm petrified, is a huge understatement!!

You are really going through it @Berlinlover How do you cope mentally? How old are you? I'm
53.

Are you tumour free at present?
What's C diff?

I just joined leiomysarcoma Group chat UK. Are you a member?

Please keep in touch. I'm seriously struggling with all of this. Xx

Hi @Enigma52 I’m 48. I have a very supportive partner so he’s helping me to cope with all of this but it’s not easy. We’ve only been together four years and I have been unwell for the past eighteen months. My parents and my brother are dead so I have no immediate family.

My last CT scan was in November and there was no evidence of cancer, my next scan will be the end of next month. I live in Ireland and have joined two Facebook groups which are based in the USA but have members from all over the world.

I can understand why you’re petrified, if you Google leiomyosarcoma the results aren’t exactly reassuring.

C Diff is an infection of the colon. The doctors here in the hospital think I got it because I have been on antibiotics almost non stop since my stoma reversal. The antibiotics caused the balance of the bacteria in my bowel to change which in turn caused C Diff.

Will you be getting surgery for the breast cancer? Will you be having chemo for the leiomyosarcoma?

@Berlinlover Thankyou so much for replying; I had hoped you would.

I'm sorry to hear you have no immediate family; my parents are in the south of England and I'm
in the North west. Support is minimal because of family living all over the UK.

So the breast cancer is metastic. My primary was 14 years ago. It returned in my lung last November. So when the sarcoma consultant said that leiomysarcoma can metastasise to the lung, I froze with fear!

I'm currently waiting for an MRI and CT. I'm envisaging the cancer spreading into my stomach and everywhere! I'm scared they won't be able to remove the tumour. I'm scared of likely chemo. It just feels like a living nightmare.

I really hope you recover soon and your next scan results are positive. X

@Berlinlover how are you today?

Hi @Enigma52 I’m doing good thanks, I’m still in hospital and still on antibiotics for C Diff but am hoping to be discharged on Monday.

I understand your fear about your cancer spreading. I’m terrified of it returning. I try to keep distracted but it’s hard when my future is so uncertain. I haven’t worked in 18 months and have no idea if or when I will ever go back. I continue to lose weight so that’s a worry too. I just want my old life back, I’m sure you feel the same.

@Berlinlover hello 😊
I hope you manage to get out of hospital on Monday; I can imagine you are feeling fed up in there?
Is the weight loss due to your infection?

Yes, I am beyond terrified too. More scared of this, than the Breast cancer. I am just about working but mentally exhausted right now. Like you, I don't know what the future looks like and that's very scary.

I've forgotten what it is like to be healthy and care free.

@Berlinlover have you been discharged from hospital yet? X

@Enigma52 Yes, I was discharged from hospital yesterday. It’s great to be home, I just hope I’m not back in hospital in a week or two again. I keep getting abdominal infections since I had my stoma reversal in October.

I don’t eat a whole lot anymore which may the reason for my weight loss. I spoke to the dietitian when I was in hospital before Christmas but I can’t stick to the meal plan they suggested, it’s just far too much food!

I hope all is well with you.

Hi Enigma.

I came across the other thread on life limiting illness due to doing a broad search for possible causes of lumps in arm.

I read through a lot of your posts and others and then came across this.

Just wanted to say that you have been heard by another mumsnetter.

Fingers crossed all goes well with this and they get a plan in place if they haven't already x

@scorpiogirly thanks. To say this is beyond horrific is an understatement.
Just waiting for a treatment plan is stressful enough!!

@Berlinlover I hope you are okay and recovering well from your hospital visit.

Enigma52 and Berlinlover, I wish you both well with this horrible disease. I was searching Mumsnet because I just learnt that my DDIL has been diagnosed with this. She had a hysterectomy two weeks ago and the results came in today. She has a meeting with the oncologist in mid Feb. She and my DS live in Spain and it feels so far away at the moment.

scorpiogirly, I hope the lump in your arm turns out to be nothing serious.

@Dahliasrule Oh no, your DDIL has leiomysarcoma? They are rare cancers, not nice at all. Sending you all a huge amount of strength and support at this time. Personally, I'm finding it totally overwhelming.

Thank you, Enigma52. Keep strong.

@Dahliasrule Thank you. I’m sorry that your DIL has this disease, thinking of you all and sending you support.

@Enigma52 I hope you are doing ok. Have you found the Facebook groups helpful?

@Berlinlover yes the leiomysarcoma FB group is okay, albeit a bit scary at times.

How are you getting on?

@Berlinlover how are you? X

Hi @Enigma52 I’m doing well thanks. I’m just back from a four day trip to Budapest, it was lovely for the first three days but I was feeling quite tired and weak yesterday so relaxed in the hotel room for the day. I feel fine again today. How’s everything with you?