The possibility of recurrence

Dear Kelley,

I’m sorry that my last post worried you.  I try not to be sad here too often, but I guess a little explanation is in order.  (Dad, you can skip this post, okay?)

Inflammatory breast cancer is a terrible, terrible disease.  Until the late 80’s, it was seen as a death sentence.  98% of women with IBC died within the first five years, most much sooner than that.  There have been several major medical advances since then, including new types of chemotherapy and the discovery that IBC patients should do 6 months of chemo before surgery, not after.  Women are living longer and better since these discoveries, and new research is gearing up at the MD Anderson Cancer Center in Texas, the IBC research clinic in Michigan, and in isolated labs elsewhere.  Hopefully, one day we will understand what IBC really is, and how best to treat it.  My hope is that we can get better at early detection, as that makes all the difference for women who must fight this nasty disease.

For it is still deadly.  Only 40% of IBC patients are still alive just 5 years later.  Over 90% of IBC patients, even if they get the full treatment of chemo, mastectomy, and radiation, will suffer a recurrence within the first few years.  That means that the cancer comes back.

I’ve cut my risk by having a double mastectomy — by as much as 15%, because 15% of recurrences are in the breast tissue.  But the rest recur in the bones, the liver, the lungs, and elsewhere.

IBC patients have a higher risk of recurrence because of the nature of this disease.  Whereas most breast cancer begins in the ducts or lobules of the breast, slowly spreading outward to form a lump, IBC quickly infects the lymphatic system (a system of little channels like blood vessels that carry waste away from tissues), so the cancer spreads quickly to the lymph nodes and, if not caught there, throughout the body. 

I had cancer in my lymph nodes.  Two were still full of cancer when they were removed at surgery.  Two more had had cancer in them, but the chemo ate it.  All 20-30 of my lymph nodes on that side were removed, just in case.  But it is quite possible that cancer infected them, and escaped elsewhere in my body, where it grows and waits.

IBC survivors understand that this disease moves fast and we must be aware of signs of recurrence.  We take our tamoxifen or arimidex, two magic pills that will help ward off recurrence by blocking our estrogen (my cancer feeds on estrogen; it’s known as being ER+) each morning.  We push through the side effects (early menopause and all that entails) and we try to be grateful for the chance that it gives us to escape or postpone recurrence.

Tamoxifen is screwing with my moods.  Big-time. 

We have blood tests, MRIs, PETs, CT scans, and/or bone scans every three months, and anxiously visit our oncologists for the news. 

Is there metastasis?  Or can I go about my business for the next three months, instead of going back to chemo?

We check ourselves, breast exams with or without breasts, because skin mets are most likely going to pop up along the mastectomy scars.

Please, God, let that little bump be just a pimple.

We worry, but we also give thanks.  For every day that we have here on earth is one that we may not have had without the miracle of modern medicine. 

Just as your presence saved my spirits, when I felt most alone and desparate, I know that chemo, surgery, and radiation saved my life. 

When we hear the news “metastasis,” none of us know how we will react.  Any reaction is okay, of course, but it is a fear that many of us carry around, below the surface.

I’m ready.  I hope and pray that it won’t happen for a very long time, but my friend Ursel lived well through metastasis and weekly chemotherapy for years.   I am not afraid.

There are not many long-term survivors of inflammatory breast cancer.  A recent accounting of 5+ year survivors on the IBC support list rounded up 30.  Although long-term survivors are less likely to be on such a support list, it’s still very much a situation where you can pretty much name the survivors who have made it 10 years or more. 

If I can make it 10 years, my children will be 13 and 11.  They will have had a childhood.

I know one survivor, the beneficiary of an early bone marrow transplant and extreme chemotherapy, who has survived 17 years.

If I can survive 17 years, my children will be 20 and 18.  They will be college boys, ensconced in a network of friends and with happy memories of their childhood and teenage years.

I am determined to make it 20 years, with this new crop of survivors who had 6 months of chemo before the double mastectomy, and to increase my odds with exercise, diet, and daily tamoxifen.

But if I make it less than five, the baby will not even be in school yet, my oldest will still be too young, my husband a widower at not yet 40, and everything falls apart.

So I am determined to move on and make the most of every day that I have here on earth, making happy memories for my boys, my family, and friends, storing up the sunny days against the days of chemo and hospitalization that will one day, hopefully not soon, come again.

I hug my children close, willing them to remember their mama’s love, no matter what may come.

So that’s what I mean when I use the word “recurrence.”  It is a very real scepter that looms in front of IBC survivors, just as with other breast cancer survivors, but with perhaps more certainty.

Perhaps that’s why the symbol of breast cancer is a shiny pink ribbon, but the symbol of inflammatory breast cancer is an angry red flame.


31 Responses to The possibility of recurrence

  1. Spacemom says:

    And we will still be here, for you, for WhyDaddy, for little bear and Widget

  2. I don’t even know what to say, except that I am praying for you that you live well past your 20-year goal. Your boys are lucky to have such a wonderful Mom and wife, and I am amazed at your ability to be so calm in the face of it all.

  3. Mrs. Chicken says:

    Your ability to live beyond this spectre is what most amazes me about you. Love those close to you and we will love you back, chemo or no.

  4. Kendra says:

    Your strength is amazing. I pray that many years from now, we’ll be reading about you taking your boys to college.

  5. Binky says:

    This is another wonderful piece for your education and advocacy efforts. Best wishes, as always.

  6. flutter says:

    You really are grace personified.

  7. Meg says:


    Thank you for this post and facing up to a tough subject. I have the pink ribbon (not IBC) kind of breast cancer, which much improves (MUCH IMPROVES) the odds against reoccurence. Still, this specter of reoccurence speaks to all mommies that have young children and have been diagnosed with breast cancer. Because no one knows how the odds will play out in their particular situation — no one knows which “percentage” is theirs. And, when you have very young kids (my twins are just over two), a timeline of two years (or five or even ten or 20) for reoccurence seems unfathomable. Even with good odds, the thought of recurrence comes to me. I, too, try not to dwell on it — but I don’t quell the thought when it pops up. I think it, then mentally make note to be “mindful” of the time and place I’m in now — with young kids that are enjoying the newness of spring, the warmth in the air, and the simple joys of earthworms, sticks, mud puddles and dandelions.

    Please keep blogging and sharing — the good stuff and the hard stuff and all the stuff in between.


  8. Kayris says:

    I am in tears right now. My three year old is patting my back and saying, “What’s wrong, Mommy?”

    I am amazed by your strength. How are you not afraid? I would be terrified.

  9. cousin-in-law says:

    I love you Susan. You are a amazing and strong woman. I will pray for you. That is the only thing that I know how to do.

  10. debi says:

    This was a tough one to take in. I had to stop twice and calm that tightness in my chest. Hang my head and say a prayer. And now with my tears dry I must tell you that you mean so much to so many that you will never know and it matters not. Your outlook is a real gift and your family is so blessed to have a women like you. When I am complaining while picking up dog poop in the yard I think of you and then I shut my mouth. I am learning to let the small stuff pass over me and enjoy the moment. I thank you and keep you in my prayers. Blessings to you, debi

  11. Love you, Whymommy.

    xo CGF

  12. teamdidie says:

    Thank you for your inspiration, courage and sharing your story. Your 20 year goal is now my 20 year prayer goal as well.
    Love and Peace

  13. Oh babe. I guess I heard ‘clean lines’ and didn’t want to think of the rest. I read this and went ‘oh’ cause I knew that. But I just wanted to hear ‘clean lines’. Cause I don’t want to contemplate the alternative. Selfish huh? Me sitting here in Australia telling myself that Susan is fine now.

    Sorry for making you revisit this, but thankyou so much for explaining it to me again. Ostrich has her head out of the sand now.

  14. Mary Beth says:

    Thank you so much for educating this breast cancer survivor about the red symbol for IBC.

  15. Ally says:

    Holding you close in my thoughts and prayers, tonight and always…

  16. NYfriend says:

    Your boys will always have your love in their heart, that I am c.e.r.t.a.i.n. of. It would be impossible for them not to.

    And you’ll reach your goal and surpass it. Look at how outstanding you’ve done already! You beat the worst odds, which were those out of the gate.

    Off to get yet another tissue…hugs to you my friend, big ole blubbery hugs tonight.

  17. clifford says:

    Twenty years my rear end, S. What’s up with that? I fully expect you, me, and Curt to be dominating the Xbox Live leaderboards when we’re 90 and in the nursing home, son!

  18. Just Me says:

    You are a remarkable young woman. You have so much courage and look ahead to each day with resolve. I visit you often and hope all the best for you and your family. As I drive to town today I will pray that the Lord will strengthen you and keep you close to His heart ! Where can we go but to the Lord ?
    In His Service,

  19. Linda Lawrence says:

    We are all praying for 20 years for you! When I turned 59 last year, I also started believing for a good 20 years. It would be so great to see the granddaughters graduate from high school and go on to college. However, there are no guarantees, so we go to soccer games, we do crafts, and we build memories. We take way too many pictures. We make scrapbooks. My point, we should all be living (yes, really living) the way you are–never taking any day for granted.

    Love you!

    “Lord teach us to number our days.”

    🙂 🙂 🙂

  20. Wow, you have yet again moved me to tears. My wish for you is to be there for your family (hopefully 20+ years) and for your children to have wonderful memories of the time you spent together.

  21. kgirl says:

    May you and your boys have 80 more healthy years together.

  22. NoRegrets says:

    Oh, you got the tears out of me in this one.
    I’m glad you are enjoying the time you have. Precious moments.

  23. creativecrocheter says:

    Thought of your remark about the estrogen suppressants when I read about this research:

    Sounds promising, though of course these things take time to get out to those doing treatment.

    Peace be with you for all the full and grace-filled days of your life.

  24. Stimey says:

    This post took my breath away. I cannot imagine how it must feel to have these possibilities hanging over you.

    Your sons will have memories of you. No matter what. But I also believe that you are going to build them for years to come.

  25. Kayris says:

    I was so moved by this post, I weote a post of my own here. I hope you don’t mind.

  26. K says:

    I’ve kept tabs on you through all of this and thought of writing but it never seemed the right time. My mom was diagnosed with IBC in 1995. She did have brain mets in 1996 and is disease free today (and has been for 11 + years). She has survived 13 years and hopefully will survive many, many more! I thought it might help to add one more long term survivor of IBC to your list. I feel very lucky.
    Hopefully she gives others hope as a member of the American Cancer Society’s Reach to Recovery team who volunteer to call newly diagnosed patients and talk them through those first few days. She is an inspiration to me as are you! May you be blessed with good news as you navigate these waters! 🙂

  27. Heather says:

    I too have visited your site since reading about you in Parents magazine and being diagnosed with breast cancer (the pink ribbon kind) that same month (last October). I had my chemo first, then a double mastectomy with immediate reconstruction done a month ago. I also chose to have my overies removed (lapriscopically) two weeks ago and am now on my wonder drug Arimidex.

    I decided to write, because I wanted to be sure you have heard of this option. The research I found showed Arimidex to be more beneficial to post menopause women, and although I am only 37, with chemo and now no ovaries, that’s me! It’s still new, and I know not all doctors will agree with this, but with estrogen receptor positive cancers (like ours), I decided it better to get rid of the source! Even with already having started Tamixofin, you could still opt for this. I know you get lots of advice/feedback, but I couldn’t let it go assuming someone else should have told you.

    I have three small children, a girl 5 years old, and two boys 3 years and 19 months, so I know how very important it is that you beat this. I will continue to keep you and your family in my prayers, and will be back to read about all the wonderful things you all do this summer!!

  28. Imstell says:

    Susan – What a service you do for the entire BC community. You have explained very clearly what we face – factually, as a scientist would, yet with concern for the future as a mother can’t help.

    Thank you. And I hope you don’t mind that I copy this to my blog as my family are too lazy to follow links. Shame on them.

  29. Scylla says:

    You are amazing. Truly amazing. I am in awe of everything you share with all of us, and how deeply your words make me feel.
    You are a wonderful advocate and voice for IBC issues.
    I pray that you get more than your 20 years.

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