Sunday, 28 October 2012

So your Friend, Wife, Mother, Sister has IBC? What does that mean?

The subject matter and information discussed in this blog post has been requested by Terry Lynn Arnold an advocate of IBC education.  Please feel free to share.

So, your sister, mother or friend has just told you they have been diagnosed with Inflammatory Breast Cancer.  You are sad for them, this is not something you would want to happen to them, but it's just Breast Cancer right?  Breast Cancer has an almost 90% survival rate and so you're thinking this is no big deal, your loved one will be fine.  Unfortunately you are incorrect.  IBC is a big deal and I will help you understand why so that you can support your friend, wife, sister, aunt a little better on their journey.

You see, IBC is a form of breast cancer that is treated very differently from traditional Breast Cancer and has a significantly different prognosis.  Let's start first with some facts.

IBC is not a lump that can be removed (like early stage BC), it is sheets of cancer that typically start in the milk ducts.
IBC spreads extremely rapidly.  It can spread to stage IIIB within a few weeks, whereas other types Breast Cancer could take 4-5 years to get to this point.
IBC 5 year survival rate is 40% compared to 90 - 95% for all other types of Breast Cancer.
IBC treatment is long, harsh and draining on the patient.

So, now that you have some idea of the facts, let's go back to how your friend might be feeling.  Imagine, you've been diagnosed with a disease that has only a 40% chance you are going to live another five years, and a 90% chance you'll get it back somewhere else in your body within those five years.  That's a pretty tough nut to swallow.  It puts your mortality right in front of you.  Not only does your friend have to try to accept and get their head around these facts, but they also have to undergo aggressive chemotherapy starting almost immediately to try and shrink the cancerous mass.  They will need all your love and support to get through this.  I know it can be painful to acknowledge their dire situation, however please do, it's hard enough to struggle through every day of nausea, depression and questioning their faith, they certainly don't need anyone saying "it's no big deal", "you'll be fine".  I'm not suggesting be all doom and gloom, but please try in your own way to let them know that although you cannot truly understand how they must be feeling, that you are here for them through the ups and many, many downs that they will go through over the next year and a half.  

Yes, year and a half.  IBC treatment is long.  It starts with chemotherapy which typically consists of two different regimes over the course of eight or nine months (depending on the type of IBC).  Some patients will require lifetime Herceptin or Tamoxifen.  That means every three weeks going back to the chemo centre to get treatment, so one is never truly "free".  

If the initial chemotherapy regime is successful in shrinking the cancer to a manageable size, then your friend will have to undergo both surgery and radiation therapy.  The order of this depends on each individual, however for maximum benefit, both need to be done.  Here is where the treatment again is very different from other types of Breast Cancer.  Radiation for IBC involves purposefully BURNING the skin.  Yes you read that correctly.  Typically, skin burns from radiation are a side effect and don't happen to everyone.  Yet with IBC a bolus is applied to the skin prior to each radiation session, the point of this is to cause the skin to burn so that the cancer in the skin cells is also killed.  This is going to be a very painful time for your loved one, not only is the burning deliberate, also the radiation regime is longer (typically 28-33 days vs. 15 for other breast cancers).  To add to this, the area that is radiated is typically quite large to try and catch any rogue cancer cells.  Your friend will be feeling poisoning from the radiation in the form of nausea, exhaustion as well as pain from the burning over a large area of skin including the underarm area.  A little loving will go a long way right now, but be careful with the hugs :-)

Finally after radiation, your mother, sister, wife will get a brief months rest (although the Herceptin/Tamoxifin still continues), so their skin can heal in preparation for surgery.  With IBC a Mastectomy is the only option.  This can be emotionally traumatizing.  After almost a year of tough chemo and radiation, we IBC patients now have to wrap our heads around losing one or both of our breasts, as well as realizing this may all be in vain because the bloody disease could come back in a year in our bones or blood and then what was the point of going through all the hell we went through.  However, we shoulder on, we know it's the right thing to do, to fight for our lives, whether it's to stay and be mothers to our children, or wives to our beloved husbands, we fight through and we suck it up because it's the right thing to do.  Would you?  Or would you rather avoid all the pain and live the rest of your days in peace?  It's a tough choice sometimes, so the support of our loved ones is really needed.  I can tell you from experience, there have been days where I've been on my knees in tears wondering if this is worth it all.  Days when my joints and bones ache so much I think I'm going to lose my mind, but I am lucky.  I have an amazing support system.  My husband, my family and my friends are always there for me.  They hold my hand through this journey, treat me with love and kindness and above all they acknowledge my illness and my decision to keep fighting.  Please if you know someone with IBC, be their hero. Love them, support them and understand when they have days where they feel their lives are's all part of the healing process and you are very much needed.

Written with love and gratitude for all the beautiful people who are beside me every step of the way.  



Anonymous said...

Thank you for writing this. Thank you for sharing the real deal about IBC and what we go through. Everyone compares IBC to regular BC and it needs to stop.

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