I have IBC

Hi Again

I totally agree with you on the information thing.  I really kept myself a little in the dark initially & possibly even now as I didn't want to read all the bad things understanding that we are already stage 3 as the cancer is in our lymph nodes & lymph system.  My doctors made me promise not to read any websites unless they are dot gov or dot org as there is so much incorrect info out there & not backed up by studies etc.  Also, some is very outdated.  The first thing I did ask my breast specialist though was who famous has had IBC - Kylie, Kay McGrath, Olivia Newton John etc etc & none of these women had 'our' type.  From what I understand your treatment has been spoton with the chemo first to stop the cancer in it's tracks since it is in the lymph followed by surgery (everyone else is surgery then chemo).  My oncologist said I was a real trooper on chemo being able to tolerate the full dose of the toughest chemo recipe on time, every time.  I thought he was just trying to make me feel good given how awful chemo is but hearing the problems you have experienced, maybe he did mean it!!  I must admit having a double mastectomy (even though my tumours were only on the left side) was the best decision I ever made as I was so big & would have been terribly lopsided.  A plus to this is I no longer have the back pain I used to experience which is an added bonus. I can now definitely say with confidence that 'just a mastectomy' is a walk in the park compared to a 'mastectomy with auxillory lymph node clearance'.  The numbness is like a huge block of wood under my left arm.  The other day, I got excited because I ever so lightly felt the deodarant when I sprayed it!!  I too get overwhelmed & somethimes teary reading the bad things about IBC.  Some of the other ladies on this site are really doing it tough.  I remember feeling a little down in the dumps after reading everyone's story initially.  You sound really positive (not that the others don't, it's just I feel a little guilty for getting out of things so lightly compared to some of the other lovely people on this site battling this dreaded disease).  I have tried to remain positive throughout but haven't stopped myself from crying if I needed to.  I've also felt it my mission to educate as many women as possible along the way as I too have no family history & mine wasn't picked up on mammogram or ultrasound initially.  I am really putting a lot of hope & effort into saying my daily positive affirmations & although no-one knows for sure, I feel like the worst of this is behind me.

Terri  xxx