Soft tissue sarcomas

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

sarcoma

Daisy222
Posted by

This feels like a strange question but I had a large sarcoma which was removed by surgery. I have had  3 check ups and all that is showing is 3 lymph nodes on the lung however under 1 cm so they are just being observed. 

My question is, if the sarcoma is removed am I a cancer patient or not? I fall under the free prescriptions and I go to the hospice but I feel like a fake as it was removed...am I right in thinking this? I’m just not understanding the concept of being ok now or still being a patient. 

Also has anybody else had the lung nodes and they started to grow or will they just stay the same. 

Daisy x

latchbrook
Posted by

Hi and a warm welcome to the online community

I'm afraid that I can't answer your question about whether your lung nodes are likely to stay the same size or grow but, like you, once my melanoma was removed I'm now just on 3 monthly check-ups. I don't consider myself to have cancer but I'm still entitled to free prescriptions as I had cancer. However, that's just me and maybe others who have successfully had a melanoma or a sarcoma removed would say that they still consider themselves to be a cancer patient.

I'm hoping that by replying and, therefore, 'bumping' your post back to the top of the page someone with the right experience will come along and answer your question about the lung nodes.

If you don't get any replies you could post that question in ask a nurse and one of the specialist cancer nurses will respond within 2 working days.

Wishing you all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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src60
Posted by

Hi

It is likely they will want to monitor you for a while to see if anything is changing, my wife's cancer is not curable but is currently stable and so she now only gets a appointment every 9 months but defiantly living with cancer.

It might help you to look at our pages on life after cancer treatment 

<<hugs>>

Steve

dinahdog
Posted by

Hi Daisy

I think you mentioned in another post that you had surgery (hysterectomy?) for uterine leiomyosarcoma- is that correct? If so, I have the same diagnosis (hysterectomy in May, clear CT scan in June).

i just wanted to check that you’re being seen by sarcoma specialists who will be able to give you more information on uLMS.  It does have a high rate of reoccurrence so you should be getting scans every 3 months for the next 2 years, reducing slightly (but scans for life after that, as it can remain dormant for years and then reoccur after several years).

In answer to your question regarding whether or not you are a “patient” - you should be considered as one, as you do need to be monitored closely from now on in case it pops back up. So don’t feel guilty about free prescriptions! 

There are some good Facebook groups for people with leiomyosarcoma- one based in the USA (but quite a few folk from the UK on it) 

It’s a great community with lots of support and resources shared, so please do join it if you are on Facebook.

Good luck, and keep well!

Mo xx