I have IBC

Hi Everyone

My name is Terri & I was diagnosed with IBC Tue 7 Sep 2010.  I remember that date well.  I am glad that some of you have written more recently on this site as I had a read a month or so ago & didn't see any recent posts so didn't end up writing anything.  Anyway, I have loved reading everything you have all written & can certainly relate to most of it.  I am 47yo with a 6yo daughter & have no family history of breast cancer although there is bowel & stomach cancer in my mum's side & ovarian cancer in my dad's side.

My initial symptom was an inverted nipple on my left side in July so I immediately contacted Breastscreen QLD as I had only had a mammogram the preceding March.  They said I would need to see a GP to get a referral to a breast specialist.  Of course I googled 'inverted nipple' & all the things about IBC came up & I began freaking out.  I saw a great GP who suggested I might have IBC & got me an immediate referral to have a mammogram, ultrasound & biopsy.  In there wisdom at the Royal Brisbane Hospital, they only ended up doing the ultrasound & couldn't find anything so I was ecstatic.  I then went on to organise a breast reduction which I had been putting off for years due to the cost (I was an 18H) because I couldn't go through another summer of rashes, pain & discomfort.  I was all booked in for Sep school hols so I could recouperate at my parents with my daughter.  If it wasn't for my wonderful GP following up & not being happy with the ultrasound results, who knows where I would be today.  She was happy for me to have a reduction but not until after I had got the ok from a breast specialist which she organised for me the following week (07 Sep).

The breast specialist did an ultrasound in her rooms & I remember seeing a largish black circle on the screen.  When I asked her what it was, she said a lymph node & when I asked her was it supposed to look like that, she said no, I think you have breast cancer.  Well, I was lying on the table & did the whole out of body experience thing where I was looking down on myself & repeating over & over in my mind...cancer...cancer...I have cancer, I can't have, I have a 6yo daughter.  Then when we sat down, she started using the words advanced, aggressive & I was getting more & more upset.  I was taking notes so I could remember everything & I couldn't see the paper as the tears were flooding out.  My husband was rung & told & he came to pick me up in an absolute state of  'this can't be happening'.  You see, I had only gone to see her to get the go ahead for my breast reduction, not to be told I had breast cancer so I was so unprepared! 

I went off the next day to have another ultrasound, a mammogram & biopsies which confirmed IBC as well as invasive carcinoma (mixed ductal & lobular).  Next were all the scans to check if I had secondaries which luckily there was no evidence of.

After meeting my oncologist, I went through 6 sessions of chemo first (TAC) every 6 weeks.  I sailed through the first 3-4 (apart from some bone pain from the Neulasta) then the build up caused a number of hospitalisations with the usual anaemia, nutrapenia, infections (bronchitis & urinary tract), temps & to add insult to injury, shingles!!  Wouldn't wish these on my worst enemy.  My double mastectomy & left auxiallary clearance was late Jan 2011 & then my radium for 5 wks ending 11 April.  I started on Femara 12 April  (the chemo had pushed me into menopause).  I had a couple of complications with the op (manually aspirated for 10wks post op because of a buildup of fluid).  Radium wasn't too bad but did get a few burns a couple of weeks after I finished & some bleeding but all good now.  Love that Moogoo Cream!

It is now 9.5 mths down the track & I'm now trying to manage my saw joints (particularly my feet) which are supposedly a side effect of the Femara & maybe even a leftover from the chemo.  On liquid fish oil, osteo panadol & looking into acupuncture.  First time I've had to buy shoes from the comfy shoes shops!!  Does anyone have any other good remedies?  I have been visiting a physio lymphodaema expert since my op & I still carry some fluid in my left arm but not too bad.  I have been wearing a sleeve every day which is helping the lypmh flow.  Just glad it's not summer!

My oncologist pronounced me 'in remission' at my last checkup & I didn't think this was possible so early on.  He said my bloodtests were good, my weight good, my general health good & he couldn't feel anything.  I guess I am ecstatic but find it hard to accept after fearing the worst in the beginning.  The doctors have said I got it early even though my tumour was 10.5cm long!!  I was lucky that the chemo had a great affect on the tumour & shrunk it down to 2.5cm.  Unfortunately, my surgery pathology still found cancer in every lymph node that was removed & my surgeon took as many as she could.  I tell myself, that's when the radiotherapy would have kicked in & killed off the remaining 'traitors'.

I feel so lucky to have come this far and for all the wonderful support I have received from family & friends.  This support can never be underestimated.  Along the way I have met some gorgeous women through 'Choices' support groups & we all benefit from each other.  I have been the only one with IBC though hence my email today.  I really just want to feel that I'm not the only one out there.

So now I'm addressing lots of new things in my life - anti-cancer foods, acupuncture, Vitamin D from the sun, relaxation & meditation, vitamins (krill oil etc) and it is a very different me from the woman I was before                    7 Sep.   And, I just love my new flat chest although I can't wait for the tenderness to settle down!!  I've been told it does.  So looks like my daily positive affirmations are paying off  'let me lymph flow freely, let my treatment be kind & gentle to me & my cancer be gone forever'.

Terri

xxx