Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.

Leiomyosarcoma

Ctomtug
Posted by

Life throws curved balls all the time!!  Yesterday we had a call from the Hospital to say that the innocuous little lumps (two of them) which were removed from my Husbands scalp and neck are cancerous.  As he has just had a major operation for the removal of a Leiomyoscaroma from his leg and been told that it did not appear to be anywhere else, all he thought he had to do was to recover from his leg operation (carried out at Stanmore Sarcoma centre who are amazing) and be alert for the future. 

What I cant understand is why he has not been checked in the whole as these little lumps where there too.  It appears that only his leg was examined;  do Doctors not get you to strip off anymore and check you over??.  I feel quite angry at our local hospital that actually told my Husband the lumps were fatty cysts and gave him the option to have them removed.  Of course,  he insisted they come off and damned good job he did.  Considering the evidence in front of them (a thirteen inch scar for the removal of the tumour last month) you would have thought they would have put two and two together.  I am not happy with his treatment there and the allocated nurse for him has been unavailable and not communicative at all.  Not sure whether to complain??  He has now been called for another CT Scan tomorrow in the neck thorax and shoulder, so lets hope there is nothing else to find out.

I know its worse for the patient but the feeling of helplessness for someone you care for is horrible.  Oh, well life must go on and we will deal with whatever it throws at us eh??  I will be attending all his appointments from now on as his back up.  Not that he will feel he needs it but it is hard to concentrate in these meetings when its a possible life and death discussion.  XX

src60
Posted by

Hi and welcome to the community though so sorry to read about what your husband and yourself have been through. Often hospitals have a unit called PALS who often are the first choice to help handle a complaint although often are best used as troubleshooters and can help to get more information and support.

You are so right though that it helps having two in the appointments, making notes of things you want to raise and anything you do not understand we or the experts here can probably help.

My wifes LMS is internal but was treated with chemotherapy that has rendered it stable, we have been living with cancer for over six years now and apart from oncology appointments every 6 months have been getting on with everything else.

<<hugs>>

Steve

Ctomtug
Posted by

Thank you so much Steve.  It does help to know that there are options.  We are waiting for the results of the latest CT scan so a bit anxious.  We are seeing the Sarcoma specialist on Monday for a follow up appointment so fingers crossed with that but is only for his leg.  We are dealing with the Local Hospital for the additional small lumps so need to keep on top of everything.  Best wishes to you and your wife.

Daisy222
Posted by

Hi, I am new here and also had leimyosarcoma which was removed by surgery. Not by an oncologist but by a gynaecologist who saw my distress. I was left walking with a tumour the size of a melon and told it was only a fibroid. I had to be catheterised as it was blocking all the functions below and still I could not see a specialist. So to be told I had cancer was a shock as I didn’t bring anybody to my post op appointment thinking it had been six weeks nothing was said so it should of been ok. So I sat there on my own in shock. I really hope all is going well for you how bizarre they didn’t do an overall check? I have a lump on my foot now and they’re saying it’s just soft tissue...anyway time will tell. Take care  Daisy. 

Ctomtug
Posted by

Hi Daisy,. Sorry to hear your news.  What a shock.  I was prepared for our news but my Husband was not.  He is doing well at the moment. As is now in the care of the Sarcoma centre at Stanmore.  They are great. 

Please insist that they remove the lump in your foot,  don't take no for an answer,  as that's what the told my husband but it was another tumour.  It's likely to be ok but you have to take some control back on this as clearly you have been let down, being left so long.   Make a fuss.  Speak with your specialist nurse.  

Hope all goes well.  Xxx