Can't tell where tumour is!

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Can’t tell where tumour is!

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Can’t tell where tumour is! Back in Sept 06, a tumour showed up somewhere behind my sternum. The results of 2 CT scans show that it’s probably EITHER mets to the internal mammary glands OR a local recurrence in that general area (I had a mastectomy and axillary node clearance in April 2003). I asked about an MRI scan, but was told that it wouldn’t give any further information. I then asked why I wasn’t having chemo if there’s a possibility that the cancer is in the lymph nodes and was told that they are giving me “the benefit of the doubt” and supposing that mine is the better scenario of the two. But if they aren’t sure, shouldn’t they err on the side of caution and treat for the worse case scenario? Not that I want to go through chemo again, but would prefer that to further spread, etc. Would love to hear your thoughts!

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I wouldn’t be happy to have a dodgey question mark behind my sternum either. Can’t they be more specific- what do they think it is/ shouldn’t they test further if they don’t know what they’re looking at/ what are they going to do about it? And yes I’d want insurance treatment if there aren’t any answers available.
If you feel that onc is too detached and couldn’t care less ask to be referred to a centre of excellence. You will get tested by a more expert team and your hospital will carry out whatever prescription the CoE decides on.
Best wishes, dilly

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Thanks for the great advice, Dilly. You are fast becoming my bc mentor!

The general consensus of the team seems to be that although they can’t be more specific, they are happy to go with the more positive of the 2 possible diagnoses because my bone and CT scans are showing that everywhere else is clear so far. But you have echoed what I am feeling, so next visit, I will be asking for that referral.

Take care, Mel (Angelfalls)

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oo crikey Mel… Treat worst case senario and hope best case senario is what i’d say. I would’nt be happy with a stab in the dark , which is what they seem to be suggesting. I’d go with Dilly’s suggestion and ask for that referral to centre of excellence, and get to the bottom of it.
Good Luck
Cherry

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Thanks, Cherry - my feelings exactly! It’s so helpful to hear that it’s not just my bc paranoia and other women agree with me.

Good luck to all of us!

Mel

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Centres of Excellence I’m bringing this back to the top just to see if anyone knows where I could find a list of the UK’s Centres of Excellence. I’ve been googling my heart out, but to no avail…

Thanks! Mel

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Hi Mel -My geography is nowhere near good enough to know which is the closest centre to you.
I’m treated at the royal marsden, and obviously there’s the Christie in Manchester. Just a thought -have you tried the institute of cancer research or cancerbackup sites? Are you any closer to getting your problem sorted?
best wishes
Cherry

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Hello Cherry,

No, none the wiser! Tried the 2 sites you mentioned, but still can’t find a definitive list of where the elusive CoE’s are!

As for finding out more about my situation, I have another CT scan scheduled for 2nd April, so will wait for those results and, if they don’t give me the info I want, I’ll be asking for that referral, to wherever it may be… Could be a good excuse for a pleasant mini-break in London or who knows where?!

Thanks for you help. All the best to you,

Mel x

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Guide to hospitals on the Breast Cancer Care site If you go to
breastcancercare.org.uk/content.php?page_id=2989
on this site you will find a guide to the services in breast care offered by hospitals all over the UK. Just select the name of your hospital from the list under clinic, press view then a list of services offered will appear on the left hand menu.

Hope this is helpful

Kind regards
Forum Host
Breast Cancer Care