Hi. I understand your anxieties around that time frame. A tumour that size should be priority you'd imagine. However.... I myself was diagnosed with either sarcoma or carcinoma. That was in February. To this day, there's still no clear answer. My chemo was aimed at both. If they aren't sure, they need to test. Otherwise you'll end up with the wrong medicine and it'll be a waste of time. I would keep badgering them though. The longer it's left untreated the worse it'll get. Good luck 

Hello there

I am sorry to hear about your situation and appreciate all this waiting and not knowing must be unsettling for you and your family.

It does sound unusual to be waiting so long but this can happen especially when they need to send the samples to other specialist centres for tests.

Hopefully the wait is nearly over and you will hear something soon, it seems like this is being chased up and the nurse specialist sounds like she is on the case so do keep in touch with them.

In the meantime do let your doctors know if the pain relief isn't working so they can readjust the dose or add something else in to help manage the pain for you.

Whilst others on here may wish to share their story with you remember everyone is different and the outcome may not be the same for you.

Do get back in touch if you want to or you are also welcome to call the nurse helpline on 0808 800 4040 Monday-Friday 9-5.

Wishing you all the best

Naomi

I would contact the oncology specialist secretary to ask where the results are, they can chase the consultant for you. You have waited for ages lts more than reasonable to need your results and to know how things are going to proceed.

Some biopsies do take a long time but they should be able to give you a time frame 

l hope you hear soon 

susie 

Hi Mandybullies

i hope you don't mind me reaching out, just wondered how are you and what was the outcome of your investigations?

Hi Keepingittogether!

Sorry, i havnt updated you all.  I had to have the tumour removed on 18/11/22, as it was STILL inconclusive!

They removed a 15cm tumour which had attached itself to the bottom of my stomach muscle.  so they completely removed it, with a small margin all the way round as well as cutting the attached muscle off too.  Im still recovering now!

Anyway I went back to the hospital in leeds on 5/1/23 for my results (FINALLY)!

I had a Grade 1 Leiomyosarcoma.  im to have 3 monthly ct scans for 2 yrs, 6 monthly scans for another 2 yrs then annually for the rest of my life.

He examined me and told me everything was all ok, but i asked him why am i still hurting when i cough, sneeze, laugh etc.  He replied " it could take a few more months as he had to cut off part of my stomach muscle.  He told me to take each day as it comes"

So to date, im still taking things alot easy, i have rolled up a bath towel and put cellotape on to keep it rolled up, so i can use that to keep my stomach from moving when i do cough, sneeze or laugh.

Hope you are well ️

Hello mandybullies,

I just wanted to say thanks for updating everyone here and sorry to hear about your diagnosis and if you ever need any information to get in touch.  Also hope your stomach feels better soon. It looks like you are being looked after well.

You are also welcome to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care

Caroline