January 31, 2008

I was surprised to learn that inflammatory breast cancer, while rare, is not the rarest of breast cancers.  That distinction instead may well belong to Paget’s disease of the nipple

Nope, I had never heard of it either.  But that didn’t stop me from getting it.  The pathology report yesterday showed that the cancer in my left breast was a very small occurence of Paget’s disease, a rare form of breast cancer.  It is, however, associated with a larger tumor of in situ, invasive, or infiltrating breast cancers (the more popular kinds) in the same breast 95% of the time.  So it’s an important cancer, nonetheless, as it can lead to discovery of a much larger tumor.  Here’s the definition of Paget’s, from

Paget’s disease of the nipple:  This is a type of breast cancer that involves the nipple. The cancer cells start in the milk-pipes or ducts at the surface of the nipple. As the cancer grows on top of the nipple, it forms a dry, crusty, bumpy rash. It can cause itching and burning around the nipple. Sometimes it can also cause oozing or bleeding. Some doctors might think it is just eczema or dry skin. But if you have these changes, and they don’t go away, be sure to see a breast specialist.

I had none of these symptoms.  It was either caught before the cancer spread to the surface, or the chemotherapy that I was taking to treat the IBC in the right breast shrank this tumor as well (quite possible, as chemotherapy affects the whole body, not just one tumor).  We’ll never know.

What I do know is I’m even luckier than I thought.  In June, I learned that 1 in 8 women will get breast cancer.  Approximately 5% of those are inflammatory breast cancer.  Another 1% of those are Paget’s disease of the nipple.  Only 5% of those are independent of  another tumor in the breast.  That makes the odds of me getting both IBC and Paget’s, but not “regular” breast cancer:

1/8 * 5/100 * 1/100 * 5/100 = 25/8,000,000

or about 3 in a million.  Long odds, to be sure, but that’s the math.  Who would have thought it?

(Edited to add:  There is another woman I know with IBC who I have found out also has Paget’s in the opposite breast.  WOW.  I don’t even know how to calculate the odds of that happening.  But all this makes my survival odds — 40% of IBC patients survive 5 years — look very, very good.)

The margins on both cancers were clean.  There was a 2 cm border around the IBC and IBC-affected skin on all sides.  So at last we can let out a breath of relief. 

The cancer is — definitely, scientifically, and completely — gone.

Waiting for the path report

January 29, 2008

Just waiting for the pathology report, due tomorrow, and for the removal of my last two drains.  Not much to say today.  Perhaps it would be a good day to encourage you to do your monthly breast self-exam.

Remember, there is more than one kind of breast cancer.  You’re looking (and feeling) for ANYTHING unusual or present in one breast but not the other.  Lumps, thick skin, redness, bruising, swelling, itchiness, bumps, rash … if it wasn’t there last month, call your doctor. 

Even if you’re nursing.

Prayers answered.

January 28, 2008

Our prayers have been answered, friends.  I saw the surgeon this morning and she has seen the (preliminary) pathology report.  I have two words for you:

Clean Margins.

The 6 months of chemo reduced the tumor in my right breast to a more manageable size.  The surgeon was able to cut it out completely, with a thin section of normal skin and tissue around all sides.  The very definition of clean margins.

But there’s more.

Remember my reasons for having a double mastectomy last week?  Remember that my first surgeon didn’t want to remove the second breast in this surgery, even though it would reduce my risk of breast cancer recurrence, and how I ended up going to a different surgeon, at a different hospital, who would?  Well, it turns out it was a very good idea.

Because my surgeon told me today that she was able to get clean margins on the tumors in both breasts.  I have had cancer in both breasts, friends. 

IBC in the right breast, and typical ol’ ductal carcinoma in the left.  The lab is still studying it to determine what stage the cancer on the left was and its characteristics, but three things are clear to me today:

1. Prayer works;

2. The double mastectomy was the right decision;


3. I am very, very lucky.

Dealing with drains

January 28, 2008

Last night was a nightmare.  After an hour or so of sitting downstairs talking to my family (my parents left and my in-laws arrived), I came back up and lay down for awhile.  The pain mounted as the hours went on, despite the medication and rest.   I just lay incredibly still, willing the pain to dissipate, as I tried to distract my mind (thank you, twitter, for the ideas!) and counted the minutes until I could take more medication for the pain.

It didn’t get better.  At 1 a.m., I woke up my husband and asked for help.  We examined the swelling under my arms, worried about fluid collection, and dealt with the drains (this means “milking” the tubes and emptying the bulbs at the ends of the tubes; it has to be done every few hours).  He gave me more medication, but it wasn’t enough.  We called the surgical oncology resident at the hospital (I was worried about a hematoma) but he said to apply warm compresses, raise the area, and hang on until morning, taking the medication and adding in motrin every alternate 2 hours.

I slept fitfully at best.

In the morning, thankfully, there was only a little leakage from the drain site, but the pain was not significantly improved.  WD drove us down to the hospital to meet with my surgeon.  The bouncing and potholes on the way were killer; we prayed that the surgeon would remove at least one of my three drains and that that would take away some of the pain.  The pain, you see, was not across my chest where the majority of the wound is.  The pain was at the hole under my armpit with one of the drains. 

It would still be early to remove a drain, but we prayed for it, and hoped beyond hope that she could help us.

She did.  After hearing what happened, and remembering that this drain caused me pain right away, she looked at the output and decided to remove the drain.  With a quick WRENCH she pulled it out, applied a compress, and there was almost immediate relief.  Apparently, the drain was in a bad place for me.  Or there was a stitch through a nerve.  Whichever, it’s gone now, and I am so much more comfortable.

Three tips on dealing with drains, for Sarah and Judy and other friends with cancer coming after me:

1) If it hurts, say so.  The surgeons can give you medication to help.  The drains will probably be very uncomfortable, but should not hurt;

2) Prepare to be uncomfortable, and to find alternate things to wear for a little while, like the “bra” that they give you in the hospital or a camisole with deep armholes.  WD cut mine to give it extra room in the armpit so the drains didn’t get pushed around, but it wasn’t a perfect fix; and

3) Grab a couple big buttondown shirts from your husband’s closet or a friend to wear during recuperation.  It’s impossible to lift your arms over your head at this time, but you want something big and comfy that can cover 3 feet of tubes and drain bulbs, both for your comfort and security (for example, you don’t want to roll over on the tubes at night; leaks happen way too easily) and for appearance’s sake, for other household members and the unexpected visitor.  After an afternoon of frustated shopping for appropriate buttondowns, I “liberated” a few old shirts from WonderDaddy’s closet that were past their prime, and they’ve been perfect.  Comfy too.

So that’s the skinny on drains and the nightmare that was yesterday.  I have more news to post soon, after I finish calling family.