I am so so sorry for you and cannot begin to imagine how you are feeling.  I am currently waiting to see a specialist at the sarcoma clinic - I have a mass on my upper arm - thought nothing of it tbh and when I saw my respiratory consultant (asthma) as I had a cough that will just not shift I told her and she sent me for an ultrasound.  I had the ultrasound on 5 March and it was a consultant radiologist who said it was definitely not a cyst and not lipoma (fatty tissue) and I needed an urgent referral to the sarcoma clinic.  I have had my appt through for 7 April (Liverpool) but I thankfully have Bupa with work.  Because its so rare there is nobody on Bupa I can see in Liverpool so I have an appointment on Monday with a specialist at a private hospital in Manchester.  I am hoping an praying for some good news on Monday and that I have now been worrying about nothing but time will tell.  I have been researching on the Sarcoma UK website and on a positive for me it says 8 out of 10 referrals are not malignant, however it also says that's because they are a cyst or fatty lump - which I know from my ultrasound this isn't the case - the waiting is driving me nuts! For you I would say try to stay calm and remain as positive as possible.  Take all the advice you can get and if you feel like you need or want a second opinion ask for it - you have to advocate for yourself especially with the NHS the way it is.  I truly hope you get on a positive treatment plan.  Sending positive thoughts your way x Keep us updated on how you get on x

Thank you for reaching out to me, this means a lot.

In less than 9 months I went from 14 stones down to 10, I had no appetite and I had chronic iron deficiency anemia picked up after numerous blood tests and abnormal inflammation markers in my body.

After seeing my doctor I was referred to my local hospital under the 2 Week referral for suspected cancer, when like yourself cyst/lipoma was ruled out. 

My local hospital undertook two biopsies, the second of which was sent to a leading sarcoma hospital in the UK. Diagnosis soft tissue synovial sarcoma.

I have been referred to another hospital, where I was immediately put on steroids and have put one stone in weight back on, feel so much better as a result, plus I am starting on a course of chemo in a few weeks.

My close family know about my cancer, but I really don't want friends/relatives who I haven't seen for years to know  

A massive plus point for you is your Bupa membership, this should open doors quickly for you.

I truly hope that you get good news on Monday xx

Thank you so much x

Hi, how did you get on on Monday?

You haven't posted an update and I am thinking about you, 

Sending you best wishes that your appointment went well  xx

Sorry... I am booked in to have it removed - wide excision biopsy next Friday 4 April - then its just a waiting game for the results... waiting is so hard!  Hope you are doing ok xx

I agree that the waiting is excruciating. After waiting weeks for my chemo treatment to start, on the day I was not well enough, high temperature and blood pressure, and c protein markers in my blood were abnormal (over 100). So I am on antibiotics for a week when hopefully they will start chemo next Wed. 

I am not feeling too optimistic tbh. All the waiting drives you crazy  

I will be thinking about you on the day you have your wide excision, all the best for a positive outcome Xxx

Hi 

How did your operation go? Have you got the post op prognosis yet?

I wish you all the best in your fight to slay the demon. Xx

I myself had my first chemo last week, felt really xxxx on days 2 to 10, feeling a little better now. 

all the best

Hi 

How did your operation go? Have you got the post op prognosis yet?

I wish you all the best in your fight to slay the demon. Xx

I myself had my first chemo last week, felt really xxxx on days 2 to 10, feeling a little better now. 

all the best

Hi Ruby

Op went went well.. was due to get my results of pathology on 22 April but after them initially confirming they were back I got a call from consultants secretary to say that they needed to run more tests so was booked in for today (30 April)... low and behold got another call yesterday to say that pathology want even more tests and there is no expected date so now no appt booked for my results... no idea if its weeks or months.  NHS website says biopsy results are 2-3 weeks and it will 4 weeks on Friday and I went private so now I'm starting to worry.  Not just for bad news but what if they have lost or damaged my sample - my one and only sample as it was a wide excision biopsy were they removed the full tumor.  Honestly its an emotional rollercoaster.  I cant even begin to imagine how you are feeling... sending lots of love and luck xx

Hiya, doctors/ pathology dept cannot (despite what they say) begin to understand what they put us through. I had a similar experience to yours, when Pathology said they had no more sample left; I was in hospital xmas eve for them to to undertake second biopsy, this one was very painful.

Are they wanting to take your excision wider? Have they offered any explanation? 

Every minute our conditions are at the front of our minds, our lives are on hold. 

Today is my 8th day after second chemo and I am feeling a little better. I need to book a third CT scan when hopefully I am told "it's working". Please, please!!

Sorry for ranting on about me, how are you today, ?? 

Are you well enough to go to work, se ding you my best wishes xxxx

Yes still in work… tbh it’s a welcome distraction x glad you’re starting to feel a bit better after your chemo x still no news on results.. it’s just a waiting gaming but here’s hoping for positive news 

Hiya, have you got your results? And fingers crossed they have got all the cancer out with healthy margins ? Xx

I have had to have a break from treatment, my immune system was so low that I developed a mouth infection. I couldn't eat for nearly 2 weeks, liquids only. 

My consultant is planning on reducing the strength of my chemo to lessen the horrendous side effects. See how that works.

Take care, I hope you are cured xx