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Original poster

Yesterday, I found out that ... and I'm scared.

606 replies

GoodnessKnows · 12/12/2013 02:53

I will be brief as I feel like I've entered a time warp where my brain has frozen, incapable of long sentences:
Had hip pain and have been waking at 3am most nights with back pain (not terrible) for about 1-2 years.
Thought I needed a firmer mattress.
Finally went to consultant.
Two MRIs and an X-ray later, I was ushered into a private room having just been told that a large tumor is at the base of my spine.
They called me back in within one working day of the second MRI.
I'm now waiting for a biopsy which will be on Wednesday or Saturday of next week - to determine its 'nature'.
Scared
Shocked
There was talk of chronic bone erosion in the lower back as a result of this thing. Also discussion of nerve paths and tumors, rare cases and cups of tea.
Now, lying awake as usual in mild discomfort, I'm in utter shock and disbelief.

OP posts:
Original poster
GoodnessKnows · 31/01/2014 19:06

Just had bad news about things. If it's not the low grade cancerous sarcoma that they thought it to be, it'll be something worse as it is something called Fibromatosis that has a high likelihood of coming back and would need cancer treatment incl. chemo, radiotherapy, etc.
this is very rare. Not a cancer so no support from cancer charity.
Will know next week what it is. I was afraid of it being a low grade sarcoma but turns out that'd be better as would need only to be taken out. No chemo etc.
my head and emotions are upside down. So yet another wait - beginning of next weeks or histology results, they think. It ain't all over
I never thought I'd wish it was a low grade sarcoma!

OP posts:
candycoatedwaterdrops · 31/01/2014 19:29

((((GoodnessKnows)))) I'm so sorry to hear you got bad news. Sad Are there any Fibromatosis support groups for you to access support, help and info? I don't know what to say, except you are not alone, we are here for you. Be kind to yourself. Flowers

Original poster
GoodnessKnows · 31/01/2014 19:41

Don't know what it is yet but don't think so. Googled but didn't see anything in way of support groups. I only saw info on it n I'm not able to look
Too scary

OP posts:
candycoatedwaterdrops · 31/01/2014 19:57

It's probably best just to take in what you the drs tell you and leave google for now because it can be overwhelming. It's a big shock to you and still raw. Do you have anyone with you? x

ancientbuchanan · 31/01/2014 20:48

Handling here. Uncertainty is awful because when you do know you can deal with practical things and plan.

Will light candles for you.

4PlusMum · 31/01/2014 22:04

Fuckity fuck fuck!

P.S. I hate chess! X

PavlovtheCat · 31/01/2014 22:09

oh goodness I don't know what to say, apart from I have everything crossed that this is something that can be treated with this surgery alone and you can start to think about recovering. I wish you had more certainty, hope your family are supporting you x

fitflopqueen · 31/01/2014 22:37

Virtual hug down the net
There will be support whatever the diagnosis, just may not be as obvious/common as other conditions, need to know what you are dealing with first.
Keeping everything crossed xx

Original poster
GoodnessKnows · 31/01/2014 22:48

Thank goodness for friends and for MN. Two lovely friends visited me this evening and we chatted and laughed. What'd i do without friends!
Now worried about impact of all this on DM (high blood pressure - told by doc today at blood test at Bart's hostal to avoid stress!) and DH (ulcerative colitis and had attack tonight) as well as DS.
Boy oh boy. You couldn't wrote this stuff! Lol
But have taken no less than 7 meds just now so will hopefully have a pain-free sleep ;)
Hope you're all well, lovely girls!
Xx

OP posts:
ravenousbugblatterbeast · 01/02/2014 00:47

So sorry you've had bad news about your results. There will be support and you will get through it, it will undoubtedly feel the worst when you're in such a vulnerable position, just post surgery and late at night.

I hope you're sleeping now, PM me if you're not, I'm around for a chat. It's a sunny Sunday morning here and it sounds like swood pigeons are in our garden.

ravenousbugblatterbeast · 01/02/2014 00:48

Agghhh! ... some wood pigeons... But I doubt it, they'd need heat shields and ice jackets in this weather...

Take care, sleep well.

Original poster
GoodnessKnows · 01/02/2014 07:01

Ravenous, how can it be Sunday?

OP posts:
PavlovtheCat · 01/02/2014 09:29

It's ok goodness you haven't lost the plot! It is SATURDAY!.

Hope you are feeling a little better now you have let some tears flow.

BehindLockNumberNine · 01/02/2014 11:32

Oh goodness, so sorry to hear the results were not what you were hoping for. Tiny sliver of comfort in the fact it is not cancer, but still...

Look after yourself, my hand is still here for holding / squeezing Smile

ravenousbugblatterbeast · 01/02/2014 12:34

So sorry, it's the end of DS's 6 week summer school holiday, I've had time off work too, I've totally lost track of the days! Blush

Rosa · 01/02/2014 12:37

Just popping in ....

Original poster
GoodnessKnows · 01/02/2014 12:49

Behind, I haven't got the results yet. This is just what they are supposing it is. And IF it's a fibrowhatever, it'd be worse than a low grade sarcoma (cancer).

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Original poster
GoodnessKnows · 01/02/2014 12:50

Pavlov
Lol
I'm losing touch with reality re days. Daily mail is bulky so I know that it's the weekend. Lol

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BoreOfWhabylon · 01/02/2014 12:54

I've been following your thread since the beginning, Goodness, and been silently cheering you on.

I've found a support/information group for NF - the Neuro Foundation - which looks pretty good, specialist helpline etc. So they would be a resource IF needed in the future.

In the meantime, you are right to step away from Dr Google. Just concentrate on your 'baby steps' for now Flowers

Theonlyoneiknow · 01/02/2014 14:48

I went through genetic testing at age 40 for NF1 (after a worrying six months and then the results said I have something else instead) Do they suspect it might be a neurofibroma? The inspire network was a lifeline for me during those six months x

Theonlyoneiknow · 01/02/2014 14:52

www.inspire.com

Original poster
GoodnessKnows · 01/02/2014 21:47

Wow thank you fr those links
No they suspect this: Fibromatosis

OP posts:
hanloumac · 01/02/2014 22:10

I'm sorry you're going through this. I just wanted to let you know I've just done 2 years of treatment for what supposedly is a very treatable cancer, ending in a bone marrow transplant. I've had the full works and I have never had the support of a cancer charity throughout, I found the best support was from the nurses and consultants. I thought Macmillan were pish and I know others who think the same. I also struggled to come across anyone in a similar situation to me. You'll cope you just do, I've lived day to day for the last two years, I've not looked ahead at the what ifs, I've got on knowing I was ok day by day and I've come out the other end! Ask your consultants if you have an assigned nurse. Also chemo nurses are fab.

Original poster
GoodnessKnows · 01/02/2014 22:13

Bore, I've just sent the neuro thing a message for help. I'm not sure whether that's what I have bit it's useful to have a contact and be proactive about it. Thank you

OP posts:
SauvignonBlanche · 01/02/2014 22:16

The Neuro Foundation looks good.