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KayKay's avatar
KayKay
Member
12 years ago

Sharing

Hello Everyone,

Thanks for allowing me into this group.  I have been reading the posts with interest.

I was diagnosed with IBC in July 2007.  It literally appeared to happen overnight but it had already spread to my liver.

I have had half of my liver removed (it grows back!) and have had well over 200 IV chemos.  I won't bore you will all the other stuff!

It spread to my L lung and I had three operations on that culminating in the removal of the entire lung.   Following that, it came back in my R lung where it remains.  

I know this all sounds awful but please be reassured that there are new drugs coming along all the time.  Also, I don't believe that IBC is any "worse" than any other BC.  My oncologist treats it as HER2+ and I don't think the fact that it was diagnosed as IBC has made much difference apart from at the initial stages described on this site.  Your comments/thoughts regarding this would be appreciated.

I hope I have not freaked you out, you probably do that pretty well without my help!

I have continued working through all this as I need something to keep my head in the right place (teaching).  I work 3 days  week.  My children are 16 and 18 and I have a 55 year old husband (ha ha).

Wishing you all the very best.  Try not to dwell on it, enjoy your lives!  

Finally, remember that Dr Google is not your friend (unless something good is being said!!)   

KayKay X

 

family
her2

7 Replies

  • ReenieBabe's avatar
    ReenieBabe
    Member
    12 years ago

    Hi Kay Kay - thanks for sharing your story.  I also had IBC that was her2+ (see my profile story).

    I too continued to work throughout treatment - interestingly - now something that I regret doing.  It is only now (5.5 years after diagnosis) that I realise I did not spend enough time on 'me'.

    I have recently finished work and am now concentrating on all of the niggly things that were giving me trouble during the cancer treatment that I never got looked at.  Also having tests, procedures etc. to try to deal with the after effects of the treatments.

    Nothing is a sure thing - no one knows how long we have on this wonderful Earth - everyone needs to just continue to enjoy every day.

    Best wishes for your future - and welcome to this blog.

    Luv xox Corinne

  • ReenieBabe's avatar
    ReenieBabe
    Member
    12 years ago

    Hi Kay Kay - thanks for sharing your story.  I also had IBC that was her2+ (see my profile story).

    I too continued to work throughout treatment - interestingly - now something that I regret doing.  It is only now (5.5 years after diagnosis) that I realise I did not spend enough time on 'me'.

    I have recently finished work and am now concentrating on all of the niggly things that were giving me trouble during the cancer treatment that I never got looked at.  Also having tests, procedures etc. to try to deal with the after effects of the treatments.

    Nothing is a sure thing - no one knows how long we have on this wonderful Earth - everyone needs to just continue to enjoy every day.

    Best wishes for your future - and welcome to this blog.

    Luv xox Corinne

  • Sandara53's avatar
    Sandara53
    Member
    12 years ago

    Hello Kay Kay, I am glad you feel comfortable sharing your brave story with us all.  IBC as you would know is rare and it is amazing how many people have gone through this horrid disease in silence.  I was diagnosed in October, 2007 and my story is in my profile.  I am thinking of you and wishing you the very best in your journey.  Please take good care of you and just remember to be hopeful.  Love and light to you x

  • Tanya_C's avatar
    Tanya_C
    Member
    12 years ago

    Great to hear from you Kay Kay.  It's good to know that there are other people out there just like us, your story is pretty amazing.  I have just had my anniversay last month a year since I was diagnosed, but I was exactly like you just woke up one morning with a large left breast , red and tender thinking what's happened to me.  I was shocked as I hardly get even the normal cold.  My cancer had spread to my left clavicle but I was very lucky that after 2 chemos it had gone down completely.  Had chemo, radiotheraphy and then my operation and had my left breast removed and all my lymph nodes under my left arm they LUCKILY found no traces of cancer in my nodes or tissues removed from my breast.  I thank my lucky stars but have worked full -time throughout my treatment I found this kept me busy no time to dwell on any bad thoughts it also kept me sane.  Keep smiling and enjoy every precious moment . :)

    Tanya xxxx

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    Hello,and I just want to say welcome to this FANTASTIC site,where you can blog anything,and no one is judgemental.You sound so strong,mentally and physically,and I have nothing but admiration for you.:) I definitely agree with what you say,in that new treatments are coming along all the time,and we never know just what is round the next corner.I can't comment on the IBC her2+ , as my cancer was different,but there are ladies on here that I am sure will want to give their opinion .Please stay in touch,as the more people we have on here,the better we can support each other. Take carexoxRobyn
  • terri_parkes's avatar
    terri_parkes
    Member
    12 years ago
    You sound amazing KayKay. You have been through so much & your children would have only been 11 & 9 yrs when you were diagnosed. Can't believe you have worked all the way through your treatment. Thanks for sharing your story with us & it's fantastic to hear even with the spread of the cancer to your liver & lungs, you are still here, alive & kicking!! xxx
  • terri_parkes's avatar
    terri_parkes
    Member
    12 years ago
    You sound amazing KayKay. You have been through so much & your children would have only been 11 & 9 yrs when you were diagnosed. Can't believe you have worked all the way through your treatment. Thanks for sharing your story with us & it's fantastic to hear even with the spread of the cancer to your liver & lungs, you are still here, alive & kicking!! xxx