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Life-limiting illness

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Original poster

Diagnosis of a sarcoma

12 replies

Gigondas · 01/02/2012 16:45

Head spinning as just been diagnosed as
Having a sarcoma (lump on my bump that developed in pregnancy). Just waiting on ct scan results to see if spread to lungs but head is spinning. Lump will come out next week but don't know if need radio therapy etc til team review results And ct scan.
Has anyone any advice/experience?

OP posts:

graciesmall09 · 01/02/2012 20:41

Sorry no experience of this but hope your scan goes well. Thinking of you.

Original poster

Gigondas · 01/02/2012 20:44

Thank you

OP posts:

readyveg · 01/02/2012 20:48

I saw this earlier on active convos...hope you have lots of good people round you. I haven't got any personal experience but a really good friend was diagnosed with a type of sarcoma (cardiac) and has some stuff online about his experiences. His sarcoma and situation are really different but I well remember the bewildering gut wrenching awfulness of the early days of diagnosis and wanted to share his journey in case it helped. Imagine anything written with a comedy southern accent and you can hear his voice. Importantly where he is now is a good place: he is well, a father, a husband, doing well at work etc. There is some stiff on a blog and that has a link to a talk board where he shared stuff initially.
petesgaff.wordpress.com/

RandomMess · 01/02/2012 20:49

I also hopes the scan goes well sounds like a scarey time

vogonmothership · 01/02/2012 20:49

Just saw you in active and came to handhold and give you an unmumsnetty hug.
Macmillan have a really good chat forum and info website that helped me a lot last year xxxxxx

readyveg · 01/02/2012 20:50

sorry posted before had finished.

Sorry if it is too irrelevant. Wishing you much luck and love around you.

Original poster

Gigondas · 01/02/2012 20:59

Thank you all- will check out links and blog. It's been such an up and down time as dd2 only born two weeks ago so have had really lovely news and then this...

OP posts:

vogonmothership · 03/02/2012 12:55

How's things Gigondas? DH has just been on the phone to his friend who had his sarcoma removed a couple of weeks ago and I thought of you.

Original poster

Gigondas · 03/02/2012 13:14

Thanks vogon . Waiting on call about treatment (surgery radiotherapy etc) as team was meeting this morning to go over all various tests etc

OP posts:

vogonmothership · 04/02/2012 17:46

I hope you are getting lots of support from health visitors and stuff. If they haven't already the hospital will put you in touch with someone for practical / emotional help, if not do talk to Macmillan, you may be eligible for financial help too xxx

Original poster

Gigondas · 04/02/2012 17:49

Thanks vogon- I have one more repeat test to do to assess some spots on lungs/spine then will know treatment . Havent been put in touch with anyone but do have a counsellor (for other reasons) who has offered help.

OP posts:

bigpants103 · 20/02/2012 22:14

My niece was born with a massive sarcoma attached to her bowel. She had it removed at 6 weeks. She was in picu for 4 weeks. We were expecting that she would need radiothrapy or chemo but the sarcoma was fortunately all removed by surgery. She has been left with some nerve damage to her bladder and needs a cathetar inserting 4 hourly to wee but we are still hoping the nerves may repair themselves.

She is now 18 weeks and is doing so well. She will be scanned regularly to check nothing has returned. Feel free to pm me if you want to know anything else.

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