Survivorship

Today I am going to regurgitate. Isn’t that a lovely word? In this case, however, it is important. My friend Susan from Toddler Planet has written an important post. She’s a rocket scientist you know. That equals much smarter than me and better able to explain things too. But since some of my readers who shall remain nameless (Mom) do not actually click on any of the links I so painstakingly place in my posts, I am forced to copy WhyMommy’s post here.

It has to do with recurrence of Inflammatory Breast Cancer and why we survivors are never quite free of it’s specter. Here it is in all it’s reality…

“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.”

Isn’t she incredible???

I am not re-posting this to scare any of you. I just want to share the realities of life. Personally, I don’t think in terms of my time on Earth. I refuse to do the math and project B & D’s ages should I live X number of years.

I don’t dwell on the possibility of recurrence. Maybe because I consider it a probability. Or maybe because I’m just superstitious and don’t want to call up the devil. But I am vigilant in my non-existent breast exams. The potential for skin mets had me freaked for over a week! And I do take care to plan for the future.

Last month I went to a retirement seminar through work. I learned that should I have a recurrence, I will be better off staying at work in whatever capacity possible. Turns out if I pass away while still employed my family will receive an entire substantial insurance policy above & beyond my life insurance. I also noted that a disability retirement would net more money than if I took a regular retirement. Perhaps most important of all, the financial adviser showed me how to ensure my family will retain the most they possibly can of the monies I leave them.

These are the thoughts that parade through my head when I find a pimple on my scar line, or a lump on my upper chest or just plain feel run down too many days in a row. This is survivorship.


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4 Responses

  1. IAM 44 ALSO I WAS DIAGNOSED WITH TRIPLE NEGATIVE IBC IN JULY 2008

  2. I HAVE 5 MONTHS OF CHEMO ALMOST DIED COULD NOT HAVE 6TH TREATMENT I HAD TOTAL 7 BLOOD TRANSFUSION AND 3 PLATLETS TRANSFUSION THEN A DOUBLE MASECTOMY IN JAN 2009, I THEN HAD A DOUBLE TRAM FLAP RECONTRUCTION, IN SEPT AND I AM STILL RECOVERING.

  3. I AM CONCERNED BECAUSE MY DOCTOR OPT OUT FOR RADIATION

    • Tessa, In those cases I would always caution for a second opinion. Although, if I’d been in that position I probably wouldn’t have at the time. At the moment you can really only pray that God has better plans for you!

      All my best…

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