Highly likely sarcoma in my thigh

Hi Trish

You may have seen my earlier post.  I only received my diagnosis last week and have an endometral sarcoma with lung spread.  Just to complicate matters I have a Bakers cyst at the back on my left knee and nerve impingement at L4-5 and S1.  So while I don't have any pain from my sarcoma my back and legs have been driving me crazy over the holidays.  I am an ex nurse, and have previously had breast cancer so like you have a reasonable grasp on what's going on.  I spent most of yesterday in A&E who were fantastic and helped me out with my pain control.  I think the NICE guidelines are that you are referred to a Sarcoma specialist team and that is what has happened to me.  I will have surgery at QEH Gateshead and any other therapies at Freeman Hospital Newcastle.  I live in south west Durham so it will be a difficulty but I have been looking at renting options.  

Pain management is a difficult process, I am pretty much on the whole range of stuff but get lots of break through pain especially if I try to stand or walk for more than a few minutes.  All I can say is that everyone I have approached for help (with the exception of my GP) have been extremely helpful and kind.  Please do keep in touch I am often up at unsocial hours.  The next couple of months are going to be a challenge (as they say) for both of us.

Nanci

Hi Nanci,

Great to hear from you though I wish it was under better circumstances  I’m glad to hear you’re receiving the care you need, I’m still waiting to hear about an MRI date. I saw a surgeon privately who acted very quickly and put me on the ‘fast-track’ system with the NHS, that meant that I wouldn’t be waiting anymore than two weeks for treatment or appts - lo and behold I received a letter in the post from my hospital saying I had an appt for an MRI on 19th Jan. What happened to the fast -track?? I messaged my surgeon who had already referred me to the Sarcoma specialist unit in Oswestry, he told me to keep the NHS appt until we knew what Oswestry had to offer which didn’t instil any confidence for a speedier appt. we’ll see tomorrow - I do have the option of having an MRI privately at a clinic about an hour away so we’ll see what tomorrow brings.

I’m taking Pregabalin for the pain, initially I didn’t have any pain relief, the lump only really starting grumbling after I’d had the initial USS, which was on Thursday Dec. 16th, the radiographer thought I had some sort of malignancy then so I called my GP to get something stronger than Paracetamol - I was told there were no slots available and I’d have to call back on Monday! This was despite me telling her I had cancer! Brilliant!! So I took some of my partner’s Pregabalin (50mgs) I called my GP on the Monday and was given a proper prescription for Pregabalin, I now take 100mgs twice a day and 150mgs before bed. I can feel that I’ll be increasing that sooner rather than later - what do you take?

I’m so sorry you’re going through this Nanci, but know that you can chat to me anytime - there’s nothing on the tv so we may as well chat on here  I’ve no idea what’s ahead of me, I’ve no idea if this lump has spread but it’s pretty big and getting bigger every day, we’ll see what they find on the MRI - WHEN I manage to get one!

What made you go to A/E? I’m thinking of calling an ambulance if I don’t get my MRI date soon, my leg already looks like it’s a different colour, my way of thinking is that I’d have an MRI in A/E as an emergency?? 

Keep in touch Nanci, I’ll be here for you xx

By the way - I can’t find your original post

As an ex nurse it is very sad for me to say that my GPs have been useless.  I have been trying to get them to give me a proper assessment for almost a year. One telephone consultation I was told there was no point in referring me as the hospital wouldn't do anything. Another telephone consultation I was told it was age related changes and to get used to it (I am 65)  Like you I took myself off for a private consultation and he wrote to my GP asking them to refer me back to him under Choose and book. The next telephone consultation the GP said he would not allow me to queue jump.

So when on 4th Nov I lost bladder control and started post menopausal bleeding I went straight to A&E.  They were amazing within 36 hrs I had an lumber MRI, abdominal ultrasound and 10 days later an appointment for the gynae rapid access clinic. They did a biopsy and a week later I had a follow up when they told me it was sarcoma and I was being referred to a specialist unit. In the meanwhile they organised a CT scan.  I had the specialist  appointment two weeks ago then last Monday the nurse rang me with results, they had also referred me to the chest team. Last Friday someone from that team rang me in the afternoon to tell me they were booking a Pet scan. I also received a letter with a follow up gynae team on 5th Jan. 

So what I am saying is that had I not gone to A&E I would still be trying get get my GP to do something and would not have my diagnosis.

I would say that if you are concerned about the condition of your leg and are prepared to wait a long time, go to A&E.  The wait time yesterday was six and a half hours, but they did see me and properly assess me and give me appropriate care.  

This is   tough journey Trish and you have to stand up for yourself and not allow them to push you to the back of the queue.

Presently I am taking gabapentine, tramadol, amitriptyline and paracetamol.

Hi Nanci,

That is really awful of your GP Practice to treat you like that, I’d definitely put in a formal complaint against those who dealt with you - it’s outrageous that they were so flippant with your needs and downright negligent - after working all your life in the NHS you deserve better than that! I was disgusted to read your message. 

We’ve recently moved five mins away and need to register with our new GP, but we just haven’t got round to it, my partner can’t drive as he suffers with dizziness and I can no longer drive with this huge mass on my leg so we’ve carried on with our old GP, to be fair they’ve been quite good in all the years we’ve dealt with them but I’ll have to contact our new GP Practice and explain the situation. 

The surgeon I saw is going to call the sarcoma unit tomorrow so we’ll see how that goes, if I’m not happy I’ll go private, my mass is very large and starting to spread across the top of my thigh heading towards where you’d have your pocket - it really needs seeing to. 

I can see you’ve got a tough time ahead of you - what treatment have they started? I know at some point I’ll need chemo as well as surgery and possibly radiation as well - I have accepted that I may lose my leg, if it saves my life I’ll go with it - I’m not scared, I just want to get treated sooner rather than later. 

Stay strong Nanci, it looks like your medical team are on the ball - sorry I didn’t reply sooner, my pregabalin make me very drowsy and I slept most of the afternoon. I used to knit plus I’ve got some cross-stitch to finish, but my eyes keep closing - I’ve lost everything that I used to enjoy with my hands, my brother is looking after our dogs as I could no longer walk them - this disease has really stripped me bare - but I’m determined to beat it and I hope you are too. 

Is your pain well controlled? Mine is but as I say that comes at a price, I sleep a lot

Sending you strength, courage and peace in your life xx

Thank you for your supportive post. My pain isn't well controlled its a continual battel to get my GP practice to see me.  I too have dogs I can no longer walk, them which used to be one of my delights, so I do know how you feel. I hate loosing my mobility but it seems I have no option at the moment.  We are strong women we will over come.xxxx

We are strong women indeed and together we’ll be even stronger  make sure you get plenty of rest, indulge in anything that takes your fancy - mine is chocolate at the mo! 

Have you got support at home with family and friends? I hope you’re being looked after, I’m sure there are some financial benefits you can claim as well but I’m not very knowledgable about that so I’m the wrong person to ask. 

Take things easy Nanci, everything will get sorted, you need someone else to battle with your GP for pain relief, can you register with your local hospice? Once I’m diagnosed I fully intend to register with ours as I know they’ll manage my pain far better than anyone else. Please reach out and ask someone (family/friend) to speak with your GP, you need pain relief, it’s an important part of your care - let me know you’ve asked someone to speak to your GP for pain relief, you shouldn’t have to put up with pain. 

Have a comfortable evening xxxx

Hi Nanci,

Just letting you know my MRI appt has come through  it’s at 9.30 next Wednesday followed by a session with the consultant, at least I’ll know what I’m dealing with at long last.

Hope you’re OK xx

Great news Trish, I contacted by the PET scan people and I am having it on Friday afternoon.  I also got an appointment to go for a pre op assessment on the 7th sp hopefully the surgery won't be too long after that.

That’s brilliant Nanci!! We’ll both make a start on beating this next week