I have IBC

Hi Paula

I am in private health & have had wonderful doctors & I'm very pleased with everything they've done.  I'm so sorry you've had a such a rough trot.  It's just so unfair that you had such bad reactions to the chemo drugs.  My oncologist was pleased with my treatment but did say that many women with IBC aren't so lucky & their tumour grows bigger rather than shrinks.  Having said that, the chemo didn't kill off the cancer in my lymph nodes as my pathology postop showed each of them still with cancer in them & as many were removed as my breast surgeon could reach.  I didn't realise the significance of surgical margin until after I did some reading & fortunately my surgical margin was clear.  Although my tumour was large (although not nearly as large as yours), the doctors think my cancer was not that far along, ie I had probably only had it for months.  They explained to me that the younger you are (& you're only 35yo), the faster your cells reproduce hence the faster the tumour grows compared to older women.  I was like you in wanting the next stage of each of my treatments to roll on as I felt the cancer could continue to grow while I was between treatments.  My op was put back a week due to the Brisbane floods & also my shingles & blood counts being down.  Then I was on a mission to start my radiotherapy & working really hard with physio to get my arm up high enough to hold in position while I had my 30mins treatment.  I had my radiation at the Royal Brisbane - 5wks, 5 days per week.  The only real hassle was juggling appointments around school hours etc & not being able to request times until a day or so before.  In the end, I went at night time & my wonderful neighbours worked out a roster to each take me up one night per week over the 5 wks.  I am on Facebook under Terita Parkes & live at Mitchelton.  I would be interested in joining the IBC support group on Facebook.  How do I do this?  Have you taken advantage of what Choices at the Wesley offers?  I have found this so beneficial & I have met so many great women & even 2 with IBC who are 5yrs down the track.  They also have a younger womens group which may interest you.  One of the lovely ladies I have met through having my op at North West hospital is only 37yo & has a 6yo.  But I have met so many other beautiful women who are 10-20yrs older than me & we have all experienced the same emotions.  In my Choices group, most of the women were diagnosed early 2010 whereas in my North West group, most of the women were diagnosed in early 2011 & are still going through radiotherapy.  Anyway, thanks so much for replying to me.  I didn't write on this site when I first found it as I felt so fortunate with how all my treatment had gone compared to some of the problems many of the other women had experienced.  I'm glad I did though, as I'm the type of person who really benefits from moral/group support & chatting about things.  Look forward to hearing back from you.

Terri  xxx