Liposarcoma

 Hi 37Honey

Have you been assigned a case support nurse?  We were given the details at the time of diagnosis and have contacted them with any questions/follow ups. I would definitely follow up with your oncologist around the timeline and weeks past. 

I hope that helps.

All the best 

Hi Bonnie 22

I have the contact number of the nurse that told me I have cancer. She told me I needed a full body scan and I am been referred to the sarcoma specialist in Leeds . I have just had thevscan and Leeds have confirmed they now have my case and if the results of the scan get to them by Monday I will be in their MDT meeting. I have had to chase things up myself . I also looked on my patient record on line from my doctors . It says that on the 17th January a MDT meeting was held at my hospital and I have poor differential liposarcoma, I was not aware of this meeting and the diagnosis from them , I just saw the cancer nurse who said I have cancer and the lump did not have clear margins 

thank you Bonnie22 for taking the time to reply 

Hi 37Honey 

Good to hear you are being seen by a Sarcoma specialist, I understand there are only 25 hospitals in the Uk who specialise. Thankfully ours is local to us in Oxford.  I wish you all the best for Monday, let us know how you get on. X

Hi Bonnie 22

Thank you , fingers crossed my hospital get the scans across in time for Monday otherwise it will be the following Monday . Just so worried as I first noticed it on my back next to my spine July 2019 if gad trebled in size by the time my op end of November and had to wait over 8 weeks for results , only got them because I phoned to ask if they had them assuming after 8 weeks all ok , it took them another week to see me x

How are you doing x

Hi 37Honey

I am sorry to hear of the delays you have experienced. I can’t imagine us having to wait so long for my partners results. The tumour was removed 20th Dec with clear margins confirmed 2 weeks later. He Was admitted back into hospital mid January and had a further 2 operations to remove the fluid build up, dead tissue from radiotherapy and also they did some muscle reconstruction to fill the cavity. He came home Tuesday after 11 days in hospital and is doing well. 

I’m sure your sarcoma team in Leeds will move things along as quickly as possible. Thinking of you x

Hi  Bonnie 22

so glad your partner had clear margins and his results came back quick , think my must have been forgotten about . Wishing your partner continue health , it must have been awful for you as well seeing someone you love go through the pain and operations . All I can hope now is that Leeds do move fast and it has not spread.

my email won’t let me accept your friend request so will have to do it when back home , we off to lakes for 2 days to try and destress before treatment xx

Hi 37Honey

Yes it has been awful seeing my partner in pain, hopeful for the future. You are welcome to Personal message me anytime , if our experience can help others I am happy to help. Will be thinking of you on Monday. Enjoy the lakes xx

Hi Bonnie 22

Thank you 

We have arrived hotel is lovely with stunning views hopefully might be able to chill out . Fingers crossed will be able to let you know Tuesday  if my scans got to the MDT meeting and I have an appointment booked to discuss my treatment. I have promised hubby I won’t do any internet searching of my cancer while in the lakes . Hope you have a lovely weekend x

Hi Honey,

I have a large lump which an MRI scan has shown to be deep seated and in muscle. I have been referred for a biopsy and am terrified. Somehow, it's comforting to think I am not alone.

My very best wihses.

XX

Hi osmonds

It is good to hear you have had mri and they are doing a biopsy, I had neither the consultant just went ahead and operated , if the test had been done first I would not be having to have further surgery as no clear margins , plus as he didn’t suspect cancer my pathology was not fast tracked . It will be 4 months from my first operation to my second . Hopefully yours will come back benign fingers crossed for you . If is a stressful time waiting for results but hope yours don’t take too long . 

Best wishes 

xx