Hold the phone

Perhaps against my better judgment, I spent some time this past Sunday researching DCIS online and stumbled across this New York Times story about misdiagnosis of breast cancer, especially DCIS:

As it turns out, diagnosing the earliest stage of breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant, according to an examination of breast cancer cases by The New York Times.  

So I wrote a polite and respectful e-mail to the two doctors I've seen so far, the radiologist and the surgeon, and asked them for more information about how the sample that was taken in the biopsy was determined to be DCIS and how I could get a second opinion if I felt I needed one.

The surgeon responded within a couple of days and promised to research it for me.

If I can find out that more than one pathologist looked at the slide and determined it was DCIS, I'll feel comfortable enough to move forward.  If not, I will ask the hospital to get someone else within the staff to look at it.

Who knows?  Maybe this all will have been for nothing.

Telling people

One of the things I've struggled with since getting my diagnosis is the etiquette of breast cancer.  If I'd been diagnosed with a more serious form of it, some things would be easier to figure out - the more life-changing it is, the more people it would be appropriate to tell.  But this diagnosis is, as breast cancer goes, relatively minor.

As mentioned in my first post, the first person I told is an employee who has been battling a far more serious diagnosis for several months.  I knew she would understand and have some insight, and seeing how gracefully she has dealt with her situation has really given me some perspective.

Then on Day 1 came my partner, and then a close friend of mine with whom I do a lot of work, because at the time I wasn't sure if my treatment would sideline me from some projects she and I had going together.  Then I told my other employees.  They've all been very supportive.

The hardest disclosure came later that day, when I got home from work.  I had to call my mother.  She knew I had been awaiting the results of the biopsy, so my call to her wasn't unexpected.  Still, I had to couch this in terms that wouldn't freak her out.  Her most recent family experience with cancer had been the death of my first cousin from colon cancer a few years ago, and the last thing I wanted was for her to be afraid I would have a bad outcome.

So I told her that what they found "was going to need further treatment" - a very sensible suggestion from my very sensible partner.  I spent some time explaining the exact diagnosis before I ever used the word "cancer."   I made sure she understood (at least I think she did) that I was dealing with a non-invasive, non-emergency "Stage 0" condition and that the radiologist who broke the news to me never even used the word "prognosis" because my prognosis is not in question.

She seemed okay while we were on the phone, although her tone of voice led me to believe she may have thought I was sugar-coating a bit.  "I'm going to pray for you anyway, if that's okay with you," she said somewhat bitterly, and I didn't know if that was a shot at me because she suspects (or knows) I'm not incredibly religious or just her way of saying, "I hear you, but I'm not sure I believe you."  Now that she knows my surgery won't be until the last part of October, I think she believes me.

Next came the e-mail to my sisters.  E-mail?  That seems a little impersonal as a way to break the news to one's siblings, doesn't it?  Maybe.  But my main purpose in telling them was to badger them to get mammograms.  Also, my sisters and I don't talk that often, so I felt that a phone call would make my condition seem more serious than it is.  My youngest sister called that evening, and her first question was, "Are you really not worried about it?"  I haven't heard from my other sister yet, but I may have used the wrong e-mail address for her.

I then contacted some of my long-distance buddies, mostly through e-mail/Facebook, and adopted the phrase "smidgen of breast cancer" to try to convey the lack of severity of the situation.  Everyone has offered their unconditional support.

From here on out, disclosure will probably be on a need-to-know basis; if my treatment will interfere with something I have to do, I may disclose it.  But I think breast cancer has a bit of a stigma attached.  I worry that as someone in my 40's with that diagnosis, I will be regarded as less vigorous and physically capable than I am.  That's precisely why I'm blogging almost anonymously here instead of on my own web site.  I don't need word of this spreading like wildfire among my local professional contacts, some of whom I may need to rely upon later for a job.

My diagnosis is an unfortunate fact, but there's no good reason for everyone in the world to know about it.

The "well-behaved end of the spectrum"

I am going to start blogging a bit about my recent diagnosis of ductal carcinoma in situ (DCIS), not because I consider it especially dramatic or life-shattering but because this might be helpful for other women who are facing the same thing.  So I'll start from the beginning.

On Aug. 5, 2010, I had a routine mammogram, my first in four years.  Yes, I am ashamed that I went that long between mammograms.  But for some reason I got on a jag about getting a number of routine screenings done, and that was one of them.

A couple of days later I got a call that they had discovered some calcifications and wanted me to come back for a diagnostic mammogram.  While the first one was no big deal, this one was very difficult because what they wanted to see is very close to the chest wall.  But eventually it was done, and I waited to talk to the radiologist.

The news was that they still couldn't tell exactly what kind of calcifications I had.  Some calcifications are always benign, and others are malignant, and she didn't feel comfortable saying one way or another what we were dealing with without further testing.  So I was scheduled for a stereotactic biopsy.

A stereotactic biopsy involves lying face-down on a flat table with one breast extended through an opening so that an imaging machine can assist the radiologist in finding the mass that needs to be sampled with a core needle.  In my case, it took the doctor and his nurses close to a half hour just to get me positioned so that they could get a clear picture of the mass that needed to be sampled.  Once I was in place, they gave me an injection of lidocaine to numb the area, and then the fun began with the insertion of a core needle and then a metal marker.

I wish I could tell you I was able to relax and go to a happy place, but the machine was simply too loud, and the situation too strange, to really allow for that.  I endured the best I could, joking with the nurses and just trying to relax.  But I can say that it was a very difficult procedure.  If you are scheduled for one of these things, and you have access to Valium, I would recommend that you ask your doctor for permission to take one before the procedure.  It will just make your life easier.

Eventually we were done.  I had a bad case of the shakes for a while afterward, I think because I had a fight-or-flight rush of adrenaline during the procedure.  They took me to another room for another mammogram (I'm still not sure why), and I had to sit down between images because my knees were shaking.

The bottom line is that with numbing agents, a sense of humor and (perhaps) the aid of calming medication, it is something anyone can get through just fine.  It's not fun, but it's survivable.

The needle biopsy took place on Monday, Aug. 30, 2010.  Two days later, I got a call from the radiologist who performed it.  It was a classic bad news/good news kind of scenario; I had DCIS, but it's a "well-behaved" kind of cancer.  The in situ part of the name means that it is still in the place where it started and is non-invasive.  The cancer is highly treatable, he said, but my next several months would be "significantly derailed."  The bad stuff had to come out, because DCIS eventually becomes invasive.

To say I was floored doesn't begin to describe how I felt.  The first radiologist I saw had told me there was only a 5-10 percent chance of malignancy, so I had comforted myself with that thought.  Besides, I'd just recently had a heart stress test, a colonoscopy, a pap smear and blood tests, and they all came out fine.  I was feeling cocky, like nothing could touch me, so the doctor's call felt completely out of left field.

I pulled myself together enough to grab a legal pad and take good notes while we were on the phone.  I asked him about treatment, and he explained that the most likely course would be a lumpectomy followed by radiation.  I asked about chemo, and he said that it's not usually necessary in cases like mine.  His scheduler had already set me up to meet a surgery oncologist.

After the call, I didn't know what to do with myself.  Whom should I tell first?  Whom should I tell period?  I went to the restroom and splashed water on my face, trying to register the news I'd just gotten.  Would I stay at the office for the rest of the day and try to distract myself with work?  Would I go home, where there would be no distractions, allowing me to spend the rest of the day scaring myself by Googling DCIS?  I just didn't know.

I walked back into the office, and I know my shock was still all over my face; I'm pretty sure our office manager, who always seems to read my facial expressions, noticed.

I should say at this point that I am not the only person in my four-person office with a breast cancer diagnosis.  One of my staff members has been battling Stage 3 breast cancer for several months and is at the tail end of a course of chemo and surgery.  My diagnosis is a head cold compared to hers.  I decided to tell her first.  I poked my head into her office and asked her to come to mine.

When she came in, I asked her to close the door.  I know she thought she was in trouble, so I immediately reassured her that this visit was about me, not her.  "Well, it looks like I'll be joining you in the sisterhood of breast cancer survivors," I said, choking back a sob.  As soon as she registered what I'd said, she pulled me into a hug and reassured me the best she could.  We talked for several minutes, and I felt better.

I called my partner, who was incredibly calm and reassuring like I knew she would be.  She is not given to histrionics, and that's exactly who you want around when something like this hits.  In fact, when I got home from work that afternoon she didn't rush to the door to make a fuss over me; it was like any other day.

What immediately followed was a difficult period of not being able to plan anything.  I had no idea when I would have to have surgery.  I knew from my research that once radiation therapy started, it would likely take place every weekday, keeping me grounded in Nashville.  I held off on making travel arrangements for two business trips I needed to make in October.  I wasn't able to commit to playing drums in a band right away.

But finally I met with the surgeon on Sept. 9, and he felt it would be fine for me to wait until late October to have the surgery.  Radiation would start about 4 weeks after the surgery to give me time to heal.

So now I have my life back, at least for now.  I can make a couple of trips and get through the immediate heavy lifting on a federal case we have at the office.

All in all, I feel very lucky.  I'm physically pretty strong, so I'm not too worried about getting through the surgery and radiation. I have good insurance.  I have a supportive family.  I can't imagine what a nightmare this would be without those things, and I'm mindful that women go through this under far worse circumstances every day.  I refuse to feel sorry for myself, not because I'm brave or heroic but because I know that, all things considered, what I'm going through is just not that bad.

Plus, I'm hoping to have appetite loss as a side effect of radiation.  Perhaps the Radiation Diet Plan is just what I need.  Just trying to make some lemonade.

More later...