Friday, November 13, 2009

I love being right!!!

Pardon me while I gloat...  I do so love to be right. 

I've been telling all my Inflammatory Breast Cancer (IBC) friends and myself that the current survival statistics don't apply to us (those diagnosed since 2001).  Why?  Well because back in the day the doctors used to treat IBC just like every other breast cancer out there instead of the nasty variety it really is.  Typical treatment used to be diagnosis, mastectomy, chemotherapy and radiation.  All of this followed relatively quickly by recurrence.  Lovely. 

According to the National Cancer Institute, women diagnosed with IBC between 1998-2001had a 5-year relative survival rate of 40% (it used to be 25%!) compared to roughly 87% for other breast cancers.  But that was before neoadjuvant chemotherapy.  Neoadjuvant is chemo given before surgery.  This type of treatment makes all the difference in the world to an IBC patient! 

Inflammatory breast cancer's symptoms, which are listed below, cause the breast to grow really large, really quickly.  In my own experience my affected breast grew to near double the size of the other (which was no small size to begin with) within about 2 months time.  Also, it's quite the non-specific cancer cell - more of a general inflammation not an actual tumor.  All this makes it very difficult, if not impossible, to get clean borders during a mastectomy.  So the nasty little cells would come back to visit quickly and were not please about being uncerimoniously evicted in the first place.

Here are general symptoms of IBC:
  • A breast that appears discolored (red, purple, pink or bruised);
  • A tender, firm and enlarged breast (sometimes overnight);
  • A warm feeling in the breast (or may feel hot/warm to the touch);
  • Persistent itching of the breast (not relieved with cream or salve);
  • Shooting or stabbing pain;
  • Ridged or dimpled skin texture, similar to an orange peel;
  • Thickened areas of breast tissue;
  • Enlarged lymph nodes under the arm, above/below the collarbone;
  • Flattening or retraction of the nipple;
  • Swollen or crusted skin on the nipple;
  • Change in color of the skin around the nipple (areola)
If you want a great visual go to Lemonland.

Good thing for us IBC patients that neoadjuvant treatment is the new and improved way of doing business because it has increased our 5 year survival rate.  This is where me being right comes in.  According to the Mayo Clinic neoadjuvant therapy combined with surgery, radiation and more chemotherapy has increased IBC survival to 50% at the five year mark.  Best of all, nearly 1/3 are alive 20 years after diagnosis!!!
Plus, general breast cancer mortality has dropped 2% a year since 1990

We are making strides, folks!!!  Large strides! 

I intend to be here twenty years from now, beating the internet-at-large about the head and neck until each and every one out there knows about Inflammatory Breast Cancer and why it's so insidious.  Or... until it's completely wiped out, which ever comes first!

Cross-posted to Mothers with Cancer


Donna said...

Just wanted you to know I tried to comment on your post about Danny it touched me so-----you may have fewer resposes due to tech difficulties. PS What a great thing to be right about

whymommy said...

Stella, did you look at the date on that Mayo Clinic page? WHY AREN'T WE TOLD THIS ON A REGULAR BASIS NOW?

There is hope ... a LOT of hope.

Thanks for sharing this -- I didn't know that the stats had improved so much!

Imstell said...

Yes, Susan. I did see the date! I made sure to get only the latest research. Strangely, I went to the IBC site & found only to old figures.

That's when I KNOW that the service we provide at MWC is necessary! 22 mothers with internet service is a powerful information source. ;-)

Anonymous said...

That is GREAT news - and I believe it will only get better for those of you diagnosed after the therapy approach improved.

I have a friend with IBC (which is why I occasionally check out your blog), and she is doing Extremely well.

Thank you!

Anonymous said...

Hi Stella,

Jenni's ex, David here. Wasn't sure how to respond on MWC without further inflaming the issue. I wish to apologise to you for my comment on there. I was unaware of the whole story and upon reading more and following the following comments I realise I was way out of line. I'm sorry. I comment here as I feel that anything I said on MWC would just start the ball rolling again. What you do with MWC is greatly appreciated by many, including both Jenni and I. In hindsight we all have things we have done which we wish we could have handled better but sometimes nothing we do will seen in a reasonable light. Once again, I'm sorry and thank you.

Anonymous said...

Sorry Stella, I meant to leave a contact other than Jenni's blog. I have started a blog of my own as I'm unsure how and where I will continue to update people regarding Jenni's, Jack's and Jamie's story after she passes. It's called, "Trying to keep it simple". Or my email address is
My gut feeling is I will continue on "The Comfy Place" for Jenni initially and then I'll see. Thanks again.

sarah said...

I love it when you're right too!

skebber said...

terrible if given the disease Inflammatory breast cancer I hope more people tested early before it's too late...