Every time

Every time I think maybe I’ll step back from blogging, or change the subject to something cheerier, it happens that I get another moving message from a reader, who reminds me how important it is to keep talking about inflammatory breast cancer (the fast moving cancer WITHOUT A LUMP) and encouraging our researchers and politicians to make progress on finding not just treatment, but a cure.

Today I heard from Diane, who wrote to me 14 months ago when her dear sister-in-law Meighan was diagnosed with inflammatory breast cancer.  Diane says,

It has taken me three months to write you a note regarding IBC and my sister in law Meighan.  Today, I decided to write you to tell you I appreciate your advocacy and your hope and ongoing strength for so many women. Meighan, at age 40 lost her 14 month battle in June to her stage 4 IBC. She and my brother have 2 young girls and now we see how much this cancer has changed their lives. For Meighan, I walk in one of many breast cancer walks this month and I go and help another friend today pick her daughter up at preschool while she is in the hospital having surgery for her early stage Breast Cancer.  I wrote you when Meighan was diagnosed (2008) and I thank you for your information. I wish for you a cure and I will continue to try and do my part in raising awarness and funds.
Dave, my brother, will run the NYC Marathon in her memory and has raised $7,000 in one week for Fred’s Team. This is an organization thru Sloan Kettering where she had her treatments.  October is the most beautiful month here in the DC area and I too so very much want it to be about a cure for Breast Cancer.

Meighan was diagnosed after me, and now she’s gone.

This cancer is serious, folks, and it doesn’t mess around.  Please take a moment to check yourself, or to remind a friend of yours with breasts to check herself, and look not only for lumps but for ANYTHING UNUSUAL on one breast that is not on the other.  Here’s a quick visual (safe for work) that shows some changes you might want to call your doctor about.  And don’t worry about bothering her … if your breast is different than it was last month … and the other one isn’t … trust me, she wants to know.

6 Responses to Every time

  1. Ginny Mason says:

    Thanks Susan, for continuing to raise the issue of inflammatory breast cancer. I was also in contact with Diane regarding her sister-in-law’s diagnosis. My heart aches for her family. It is shocking how quickly this disease can escalate and how challenging it can be to treat.

    I’m one of the fortunate ones, diagnosed in 1994 when inflammatory breast cancer (IBC) was a death sentence. I’m living proof that people DO survive but more research is desperately needed to improve diagnosis, treatment and survival. I’ve been blessed with 15 yr I never expected to have so have a responsibility to do what I can to raise awareness and push for more research.

    IBC is more common in younger women and also in African-Americans. Pay attention to your body and don’t ignore breast changes! If you notice a change and it doesn’t resolve in 2 wk, SEE YOUR HEALTHCARE PROVIDER! If the symptoms persist in spite of treatment, find a breast specialist and ask for a biopsy!

    Susan….Keep reminding people, “You don’t have to have a lump to have breast cancer”!

  2. Donna W says:

    Fight the good fight, my dear. I never heard of IBC until I read your blog and one other. Spread the word.

  3. Joan says:

    Susan, sadly education is still desperately needed. Another IBC patient, now on hospice, has a story of lack of diagnosis/attention from medical professionals that is compelling. Her bio on breastcancer.org (through which she finally diagnosed herself, sadly after way too many months and at stage four) is compelling. It is at http://community.breastcancer.org/member/49864/profile

    Thank you for your educational efforts. You will never know how many you have helped.

  4. BetteJo says:

    It won’t go away unfortunately, if it’s not you it’s somebody else. Sadly, there is always someone else. Education is so very important and God knows you’ve done your fair share! Thank you. 🙂

  5. Andrea, Long Island NY says:

    Hi there,

    Ive been visiting your blog for quite some time now, and thought I should say “something”. Im certain youve heard it all, but I think you are well written, and strong for sharing your experiences. I am truly sorry for all of the pain, suffering and worry youve gone thorugh, espcially having small children and wondering the “what ifs”. As a mom, I imagine that is probably the worst part (worriyng about your kids)??? Your message was heard loud and clear here on Long Island, and has caused me to really take my own breast health much more seriously (I did not know about IBC until I came across your blog).

    Wishing you many more years of good health with your kids, star-gazing, and good luck on your upcoming book. Its totally cool that youre an AP! I went to NASA once as a teenager and was awestruck by what I saw.

    Alas- I am moved by your blog!



  6. […] an estimated 25,000 women have been diagnosed with IBC since I was diagnosed in June 2007, and many have died because they weren’t diagnosed before it had spread too far.  Let’s keep spreading the […]

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