changed their mind

pinker

They thought is was IBC, but the last slide came back lobular ER/PR-, HER2+, st 3; still not a tumor; still thickening of the skin and still seems just as aggressive. is this better or worse? It's lymphatic, but they say my bone scan is negative and cat scan too. Should they be giving me a PET scan too ? They started my first chemo last week. Went well. just feel like i'm fighting the flu all the time.

ibcmets

Phyllis,

I'm glad it's not ibc.  I have a friend who has lobular with no mets and has been clean for 8 years.  It will take a while to recover your energy.  Since you're HER2+, they will probably give you herceptin.  Wishing you the best with your treatments.

Terri

Laura_Jean

Just because it is lobular does not mean it is not also IBC. IBC is a clinical diagnosis not a type and can be either ductal (IDC) or lobular. I have IBC with lobular features.

For more info on IBC symptoms and diagnosis you can see the group at www.ibcsupport.org.

Laura Jean 

pinker

wow .. my doc never said that. thanks for the info.

HerSister

Hi Phyllis,

Laura_Jean makes a good point.  My sister has IBC, but it's also ductal (& also stage III).  I don't think there's an IBC only diagnosis, I think it's always also ductal or lobular.

The fact that your doc said it's lymphatic (which IBC is - in lymph cells in the skin) and no typical "tumor", but 'thickening of the skin', which could describe the 'sheeting' typically associated w/ IBC and the fact that you're a stage III (IBC is almost always diagnosed at stage 3) - I think that warrants some more investigation.

And, I think a PET CT scan is usually used as the best tool to determine if there is any mets involved.

Hope you get some answers soon.