Terrified i'm dying!!!!

[Lostmymind11]

Sorry if this is on the wrong thread but i'm not sure where to put it

Nearly 2yrs ago i had surgery to remove a sarcoma (no treatment afterwards as not needed). My 6 month scan was clear and i had another scan 4wks ago to check if it had come back. The hospital have rang today and told me they had booked me in next Friday to see a member of the surgery team. I am abaolutely terrified and beside myself with worry. I am a single parent to a very young child who has no contact with dad due to domestic abuse. I barely have any family/friend support. If the cancer is back i really don't know what i will do. I feel physically ill

I agree with all this. Be super kind to yourself until Thursday and you can find out more. I think it's a great idea of doing something to remind yourself of the lovely holiday you had

So sorry to hear this. Hope you get some better news soon x

I am sorry to hear that, and that's an awful wait.

I am so glad you and your son had a lovely holiday.

Can you plan some fun things to keep busy between now and Thursday,?

The waits make everything worse. Hope you can get a plan in place asap. Thinking of you x

Hi everyone, so a nurse rang me today to confirm that in the MDT this morning they agreed I WILL be having the chemo 😩 i feel really deflated right now and like this is just the beginning of the end. I wont get to see my oncologist for anymore information until next Thursday which is really unfair. I'm not even sure how they know that it definitely is cancer and not an infection etc. Was hoping for better treatment options other than chemo

I'm really sorry to hear this update. The waiting must be so hard x

Hi, OP -

This is so hard. It really isn’t clear what is happening. Is there anyone besides the oncologist you could talk to before next Thursday? Perhaps a nurse?

Hang in there ❤️

Hey - me again. We had a scare like this after the first op. In the end it turned out to be inflammation from the operation which eventually settled. I can’t remember what clinched it for them in the end not to operate again, which is what they were suggesting, but have a feeling it was a biopsy. You may still be a step away from the chemo.

The chemo is booked in for a week on Monday so i doubt i will be getting a biopsy. Whats confusing is the letter i have about the treatment which states your appointment for chemotherapy/immunotherapy has been booked for..... Then tells me the date/time etc

Do you have a sarcoma nurse you can call? If not, you can ring and ask to speak direct to your oncologist to get things clarified.

My nurse is on A/L. It was her colleague i spoke to and all he told me was that they agreed on chemo and said my oncologist will speak to me about it all next Thursday in clinic

If you rang the clinic, could anyone give you any more info or is it only the consultant? Xx

It’s awful to be left in limbo like this and quite unfair given that your nurse is away to break news like this with no rationale. It’s very hard to assimilate this kind of information without all the facts. Given this, it may be worth another phone call tomorrow, explaining how you’re feeling. Don not hold back on your emotions with them. You are entitled to know what is happening as soon as possible.

Morning, i agree its totally unfair to make me wait until 3 days before they want to start treatment to give me all the facts. I'm going to email this nurse again today. Tbh i might even get a phone call as i emailes him last night after speaking to the royal marsden hospital asking him to ask my oncologist to forward all my medical reports to them

Are there any online forums for people with your condition OP? Just for more specific advice and support? I am sorry you are in limbo x

So sorry you’re going through this Lost.
I hope you get a response from the nurse and some clarification about your treatment plan. The NHS is such a lumbering behemoth that all too often the poor insignificant individual on the business end gets forgotten. Hopefully when someone explains their decisions you will feel a bit more settled.
Will be thinking of you. X

Hope you've managed to find out some more today OP.

I haven't found out anything else yet. I have to wait until my appointment on Thursday

Very sorry to hear this, OP. Hugs and best wishes. I will be thinking of you 💗

Wishing you well for Thursday; can imagine that the waiting and lack of information is making things very stressful for you. So glad that you had a break in the sun and a chance to relax even a little bit. Brave lady. Will be thinking of you x

I hope tomorrow goes well and you manage to get some rest tonight

Hope you got more information today OP. Thinking of you.

Yes, OP, hope you are okay this evening ❤️

Did you go to the appointment, or maybe was it postponed?

Hi everyone, sorry my head is all over the place. I did go to the appointment and the oncologist told me he is 99.9% sure the lymph node is necrotic from looking at it on the scans. The lymph node is question is behind my stomach wall. Its just that one area affected and no evidence of disease elsewhere. He said i need to start chemo to stabilise the lymph node, kill off any other cells there may be before they grow with the hope they can then remove the lymph node. So far i will be having 4 doses of chemo but he said they may increase it to the full 6