Forum Discussion

hillburn's avatar
hillburn
Member
13 years ago

IBC in WA

Hi to all IBC comrades.  I was diagnosed in Sept 2012 have undergone the chemo to reduce the margins, have had the mascetomy and lymth nodes removed and now onto more chemo and radiotherapy for the rest of 2013.  There is so little information, educational awareness etc in WA that most people have never heard of IBC.  My mission over here is to educate and hopefully body willing I will accomplish this project.  If anyone can assist in more info etc love to hear from you.  Its no picnic but onwards, upwards.

6 Replies

  • Thank you Lynette for your lovely response.  You will be in my prayers and thoughts.  Your obvious faith and strong character have weathered the storm well, keep the Drs guessing, keep smiling and stay tough.  I just had my last AC Chemo and takes me around 8 days to recover so staying low, keeping warm and trying to keep these dark days beyond me. Next is the radiation and then another 12 months of chemo.  When I hear from people like you I know I can do this.Kind regards, Di
  • Hello, hope your treatment goes well for you!! I was diagnosed with stage 4 metastatic IBC in may 2005. Given 2yrs to live, 6 rounds of 3 types of chemo, followed by 35 days of radiation. I am on aremidex, still have my check ups every 6 months at RPH. No ops for me as my cancer had gone to my blood and bones. But by the grace of God I am still here. It's keeping the drs guessing and scratching their heads!! So look after yourself both in body and spirit, keep your sense of humour and laugh lots. Prayers and blessings Lyn
  • Hi Sandra

    Many thanks for your comments.  Had the new Chemo today and still feeling fine (fingers crossed).  Sounds like we have a similiar diagnosis.  I am so pleased to hear you are in remission, what a strong woman you must be.  I have all the info now and had more questions for my Oncologist today.  So NO fears, all positive and looking to the future.  I understand there will be set backs but I have so many wonderful things and people in my life my intention is to give it my all and like you be in remission.  I also wish everyone peace, love, and there is always hope, be strong, be positive.  I met a wonderul couple  during my first " chemo experience" in the Chemo ward.  They have been going through all of this for 24 years, she has had some recent bad news but what an ispirational person to the new comer.   She is fighting hard and has been very lucky to have a good husband who has made her journey - his.

    To those of you who are struggling I extend my hand and walk with me, I have strength for two.  Help to educate all those you come into contact with IBC , to give encouragement to those who need it as Sandra 53 has to me, so thank you once again.  Cheers until next time.  Hillburn.

  • Hi Hillburn,

    I hope that you are surviving through the horrid treatment for IBC.  It is an insidious disease but there is hope and light at the end of the tunnel.  I was diagnosed in October, 2007 and was stage 3C.  After six rounds of chemo, mastectomy, radiation and herceptin (I was HER2+) I am still in remission.  The USA site is a wealth of information and I have formed many dear friendships and received some fabulous advice from that.

    Any other questions you may have or any suggestions you may need please feel free to ask.  I understand and know how IBC literally knocks the wind out of you and the feeling of sheer exhaustion, fear and anxiety can be so gripping.  Please take care and nuture yourself.  To all the women on this site who are going through treatment, in remission or whatever stage you may be at I wish you peace, love and hope.  <3

     

  • Good on you for educating people.   I do this everytime someone asks about my cancer, I slowly tell them about IBC and how rare and fast growing it is.

    I'm sure that many people have now  got the message in lots of different circles of friends and now if one of their family gets symptoms they will be on to it quickly.  I've done my chemo, surgery and radiaton.  It's now 2.5 years after diagnosis.  I'm on Arimidex, and having treatment to control lymphadema,  having foot troubles from the chemo but Im grateful to still be here.

    Wendy

  • Hello Hillburn,

    Very best wishes with your treatment.  I was diagnosed with IBC in August, so just a month ahead of you.  I had chemo for 5 months and am about to have surgery.  

    The internet site that was recommended to me, and that I found most helpful, was breastcancer.org.  It is an American site - and much of the best information is on international sites.

     

    Kind regards, Kathryn