Well, that was disconcerting…

I just finished watching an episode of Mystery Diagnosis. Not my usual TV fare but this one was about Inflammatory Breast Cancer, or as they called it: “The Breasts That Changed Color.”

The show told the story of Amanda Nixon who at 27 years young found her breast hardening and changing colors shortly after breast reduction surgery. This is a new twist on the typical IBC tale. The vast majority of IBC patients are either pregnant or nursing when misdiagnosed with mastitis.
Four years later Amanda is cancer-free and very active in the fight against IBC. She has beaten the odds… so far.

I’ve never really heard hard statistics on the IBC mortality rate. I just knew it was very high. Well, tonight I heard the official stats. A mere 40% of IBC victims are alive 5 years after diagnosis. Only 30% by 10 years. !!!!!!!!!!!!!!!!!!!

Here are some more numbers for you. One in eight women will be diagnosed with breast cancer in their lifetime. Of those women, one in ten will be under age 40. Cancer in younger women is typically more aggressive than other cancers.

Although those numbers are frightening, as an IBC survivor I have them embedded in my psyche. What I found disconcerting is that there is not standardized triage for breast cancer patients.

My oncologist was all over the IBC diagnosis. Even when I was in denial. I foolishly decided I didn’t have IBC because there was no clinical proof. Like I can just decide that something is or isn’t so and have the world fall into line. It’s laughable, really. Or maybe just naive.

Amanda Nixon’s doctor had no idea that the eggplant colored breast he was looking at was IBC. Don’t they have a checklist or something???? I mean, really. Anyone with internet access can Google “breast discoloration” and find literally hundreds of thousands of sights referencing Inflammatory Breast Cancer!

My own mother was sent to a surgeon for a lumpectomy but NEVER REFERRED TO AN ONCOLOGIST. At least not until I badgered her and she badgered the surgeon and she finally fired him for dragging his feet on the referral. Gee, it turns out she is BRCA 2 positive just. like. me. Seeing an oncologist changed her entire course of treatment.

WHY isn’t every woman diagnosed with Breast Cancer referred to an oncologist – even if it’s just for an evaluation?

WHY isn’t there an intake “symptom checklist” for Breast Cancer patients that can be fed into a database or something?

WHY, in the age of the internet, is there such a wide range of knowledge, awareness and approach to Inflammatory Breast Cancer? For cripes sake, some doctors are still doing surgery first before chemo!!!!

And why are some of us blessed enough to be here three, four, even ten years later when others don’t last out the year?

Cross posted to I Can’t Complain Any More Than Usual.

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6 Responses to Well, that was disconcerting…

  1. Lyn says:

    I’ve been wondering the same thing, why some people seem to beat it for good and others get a recurrance right away. I’m praying that I am one of the lucky ones when my treatment is all done, but there is no guarantee. And I was mis-diagnosed at first also by a retarded surgeon who told me I had IDC after biopsy, even though my breast had inverted nipple, peau d orange, ridges and hardening. And given an antibiotic for mastitis though I was niether breastfeeding nor pregnant. I just met a woman today who was diagnosed with IBC in May, and they did surgery first. They didn’t even do a modified radical, they did a partial and a few lymph nodes and 3 of those came back positive. NOW she is doing chemo… what????? I tried not to be shocked when I heard it.

  2. In Israel, I was sent to an oncologist right after the surgeon (before we finalized any surgical procedures).

  3. kate says:

    Wow……….good questions…….scary stuff..

    k8

  4. Momoftwoinhawaii says:

    My daughters are 9 and 6. I breastfed each for 14 months total and had so many bouts with mastitis. On my left side at least 6-8 times with each child. After I weaned my youngest my breasts went completely flat and I had them augmented, saline under the muscle. I started having breast infections on the left side so many times (12 times at least) and my insurance doctors are out of the loop because I’ve been going to my plastic surgeon about it. I have to take rifampin and clindamycin at the same time as amoxicillin does not work on the breast infections. It seems to get infected when I wear underwire bras or tight elastic. It gets red on the bottom half of my breast, the redness on my recent infection spread onto my rib cage.
    I’ve asked doctors about IBC, including my plastic surgeon and he said it probably is not since it goes away with the strong antibiotics. My insuance doctor experience is not so great, went to ER one of my first infections and he thought it was mastitis and gave me antibiotics that didn’t work, which is why I only go to my plastic surgeon now because he will prescribe the strong combination of antibiotics that makes it better.

  5. Momoftwoinhawaii says:

    My question is can IBC redness go away with antibiotics? And I’ve heard that IBC is misdiagnosed as mastitis so I wonder if the infection can appear to come and go with antibiotics?
    I also would like to know if I don’t have symptoms like peau’dlaorange or inverted nipples, does that mean it can’t be IBC?
    What tests can they do, blood test? Maybe the next infection I get I can have a bloodtest. I am 35 and have been getting these infections ever since I was 26.
    Any insight would be greatly appreciated.

  6. Jen says:

    I searched for several months but because I was breastfeeding it never occurred to me to be anything other than a plugged duct or mastitis. I have a section in my blog specifically for that because i don’t feel like the BF sites are up front about other possibilities for fear of scaring BF moms. When I finally was seen (after being put off for several months) my midwife said “you don’t have ahistory of mastitis” and she was right. So I think some are more suseptible to mastitis….but if you think something is wrong you are your own advocate…as I learned from my own experience….so get a second and third opinion if you are concerned!

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