I love being right! by Stella

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 I can’t complain any more than usual

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11 Responses to I love being right! by Stella

  1. whymommy says:

    No way! 1/3 are alive in 20 years? That is AMAZING NEWS!

    Guess I better dig out the paperwork and start funding the ol’ retirement fund again, eh?

    🙂 Thanks for the fantastic news!

  2. Spruce Hill says:

    That’s awesome!I always like to hear good cancer news! 🙂

  3. imstell says:

    I know! We IBCers should all be having a virtual Beverage O’Choice together tonight and doing the Happy Dance!!!

  4. Laurie says:

    This is very good news. Great post, Stella. And may we all be part of improving the statistics.

  5. Lyn says:

    My onco kept telling me we were going for a cure, and still says it now. I didn’t want to believe her, but I am starting to let my guard down a little and actually believe it’s possible that I will be here in 20 years to see my kids grow up. The point you made was absolutely right, the treatments are so different now and also the follow-up is better. I think it is so important for newbies to know this info from the beginning!

  6. Did you all know there is also a ‘breast cancer vaccine’ now also?
    This pushes the ‘odds’ up even more.
    And….The University of Washington (Washington State) is in stage II trials with an amazing new avenue of treatment.
    “A Phase II Study of Topical Imiquimod and Weekly Abraxane for the Treatment of Breast Cancer Cutaneous Metastases”

    Ladies, Imiquimod is a cream! I met a lady on the trial and was amazed at her progress….jaw dropping results. You can read more here:
    http://depts.washington.edu/tumorvac/trials.php

  7. […] then, I got the news. Stella posted an incredible post on Friday about the new statistics for women with inflammatory breast cancer.  Go on, read the link.  […]

  8. Jenster says:

    That is awesome!!!

  9. imstell says:

    Patti – Awesome! Thanks for the info! A cream! Who’d ever guess.

  10. The Mayor says:

    20 years of cheers for this news! That’s great and wonderful to hear!!!

  11. Lyn says:

    I’m in contact with the UofW with my onc to take part in the vaccine. The doctor who heads the trials is the one who referred me to my current oncologist thanks to Patti B., and I’m starting the process of beginning when I finish rads right now. I don’t know anything yet, but will update when I do.

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