Sally

Interesting word, "sally," when you don't mean it as a woman's name.

A "sally" is defined as:
* an excursion or trip, usually off the main course
* to issue suddenly from a defensive or besieged position to attack an enemy

I think that might be a good word for this excursion I'm on--it's certainly not the course I planned.

If you're looking for me and I don't answer right away, it might just be that I'm off for a while on my sally. I won't go far and I'll be back.

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Hearing about what’s next

We sat down with Dr. Nath yesterday and discussed next steps. PJ was with us, I’m so pleased she was able to get out of work and come to the consultation. She asked thoughtful questions, interpreted a few things for Dave and I, and learned of her own increased (although fractionally) risks of developing breast cancer in the future (.04% v .02% for someone with no family history in the next 5 years).

The plan is as he outlined when he called last week with the results: further surgery, radiation therapy, and possible estrogen-inhibiting drug therapy. But there are a few more components added, all of which are sound recommendations and which I’ve accepted.

Of important note: results of the June 14 biopsy show complete excision of the DCIS (1.3 cm piece), but with micro invasion (0.1 mil). One side of the biopsy showed a very thin margin (within 4 mil.), and he’d like to go back and clear a wider margin. Fine with me. Micro invasion is a tiny spill of cancer cells from the affected duct. The question is whether these have traveled outside the immediate area. The clean margins would suggest they have not moved; we need to be sure.

He would also like to do a sentinel node biopsy to clear the micro invasion. This procedure is done at the same time as the additional excision and involves dropping dye and radioactive markers into the excised area. The dye and markers travel through the blood stream to the nodes; during the procedure he will check nodes (under my arm) and clear any that are “dirty.” At this stage we could revert to a full mastectomy if the situation warrants. He doesn’t think we’ll have to do that, but it’s an option.

He expects that I would go home on the same day as this procedure.

Speaking of mastectomy, that too is an option, in the event I just don’t want to deal with radiation and would be content to get rid of my breast now. While it’s nice to have options, that’s not what I want to do.

We are not rushing to surgery. He says the breast is still tender and healing from the June 14 biopsy (in fact, he’s leaving all of the bandaging in place). He’d like it to be more healed before he goes back in.

Here is the plan:
July 3: MRI to rule out any additional areas of concern
July 11: Next appointment with Dr. Nath
July 16: Appointment with the radiologist to arrange radiation
Last week of July: surgery, further excision and sentinel node biopsy
Mid-August: radiation would begin, 5-day-a-week treatments for six weeks

The only appointment not scheduled is one with an oncologist.

We should be done by early October, in time for a splendid birthday celebration. Mark your calendar.

Possible concerns:
Problem showing on the MRI: is there a need to do more extensive surgery or perhaps consider mastectomy?
Problem showing during the excision/sentinel mode biopsy: again, need for more extensive surgery or mastectomy? I’ll have to leave my wishes and appropriate authorization prior to surgery.
At any point: results may indicate a need for chemotherapy. That door has to remain open, and I accept that possibility.

A clear MRI should eliminate the other potential problems.

I’m not seeking a second opinion. Dr. Nath presented my case to the Winchester Hospital/Dana Farber Tumor Board on June 26, and the board agreed with his analysis and plan.

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Why sleep when there's so much to think about?

Those who can—sleep. Those who can’t—get out of bed and write. It’s 2:45 a.m. on Day 7. Is it really Day 7? Seven days since diagnosis, but when did this really happen? Before the first mammogram. I’ll have to go back to April 3rd (the day before the first mammogram) and count from there. Pick numbers along the way and have celebrations (as on Day 143).

Ok, it’s a little unsettling how easy it’s getting to say “I have breast cancer.” Every time I say that it drives it home again and reinforces a little more how this is going to be part of my life for the rest of my life.

I’m trying to decide how to look at this. It needs an identifying name. It’s certainly not an adventure. To call it a journey sounds like what everyone else calls it. When I count the days I’ll find a word.

I had a long conversation with a friend who had “in ductal carcinoma,” stage one, and had a 2-inch mass removed, followed by radiation. She’s filled with encouraging words but more importantly, shared how she got from the “Why me?” to “I can do this.” She’s filling my inbox with doses of encouragement, including an e-card I found before I started writing this chapter.

There are phone calls and notes of support. Some of those things make me cry, some make me laugh, and all of them remind me of how special we are to one another (granted, some more special than others… and of course I’m talking about you!)

I’m saving all the notes, all of the papers of importance or that mark this event in one way or another, including the two solicitations for donations to cancer research that came in the mail the day after diagnosis. Timing, eh?

Everyone says a variation on “Tell me what I can do, don’t hesitate.” The kindness in these early days is heart-warming, and I’m sure the offers will be extended in the many weeks and months ahead.

You have to wonder—where it comes from? Are people generally so kind? I’d like to think so. Is what goes around the thing that comes back around? Or is saying “Let me know if I can do anything” a way of saying, “Holy crap, better you than me.” Hey, I know I’m rambling. It’s what my brain does so well. Imaging how thin I’d be if my rambling brain burned calories?

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How did I get here?

How did I get here?

It’s hard to say. How much does heredity have to play in whether you develop breast cancer? I’ve read lately that there are more links being made through a father to explain why his daughter develops breast cancer. In the long run it really doesn’t matter how, only that you learn to deal with it.

Breast cancer runs in my family. My maternal grandmother died of breast cancer in 1955 at age 59. Her daughter, my aunt, died of breast cancer in 1985 at age 58. My mother had had a few scares through the years and had a negative biopsy about 25 years ago.

My paternal grandmother had a breast lump but didn’t take any action to determine its significance. She died in 1988 at age 83. My father died of lung cancer at age 64 in 1995. A different form of the disease but cancer none the less.

I’ve been very proactive about breast health for years. I have a mammogram every 366 days and over the years have had more than a handful of call-backs. Twice I had ultrasound exams, and on one occasion had a cyst drained.

(Interestingly, a year or so ago I heard a radio ad for a clinical trial women who are at risk to develop breast cancer. I called and sat through a fairly extensive telephone interview. In the end, the nurse decided I wasn’t enough at risk to participate in the trial.)

Here’s the timeline to where I am today:

April 4, 2007: Annual mammogram at Family Medical Center, Wilmington

April 16: Second mammogram, Winchester Hospital Imaging Center, Woburn. Consult followed with nurse who discussed the next step, a stereotactic biopsy. Said a surgeon from their staff would be assigned to my case.

May 2: Stereotactic biopsy at Winchester Hospital Imagine Center with Dr. Ronald Nath. Not a difficult procedure (although everyone I’ve talked to who has had one said it was a terribly painful experience—not so for me).

May 9: Follow up with Dr. Nath. Negative results of biopsy for reasons it was performed, but one of the 28 samples revealed to other things:
• intraductal pappaloma, which was completely excised
• atypical focal hyperplasia

Was of the opinion that neither warrants further action, but the pathologist suggests further biopsy on the AFH, so it will be scheduled

June 14: Excisional biopsy, needle localization with IV sedation at Winchester Hospital, a pretty miserable event. Long day. Compression for 30+ minutes for mammograms and placement of wires into breast (to guide Dr. Nath to proper site during surgery), followed by 3+ hour wait for surgery. Vicoden and ice packs are my dearest friends.

June 21: Call from Dr. Nath with results. Diagnosis is ductal carcinoma in situ—DCIS—a non-invasive cancer confined to milk ducts. It’s a common form of breast cancer and very treatable (98%). Cautions he is doing some additional stains (lab tests) to ensure there has not been any micro invasion.

(I wrote a letter to the director of the imaging center at the Family Medical Center asking that she express my thanks the technician who took the April 4 films. If not for those films, I’d be a year down the road and in more trouble.)

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The DCIS Diary

I have breast cancer.

For years I’ve anticipated I would say those words, and the time has come. Lucky for me (I hope) it’s early in the game and I’ll be a winner.

I got my diagnosis by phone from my doctor two days ago. Dr. Nath was on vacation

out-of-state but insisted he would call with whatever news there was to share. I couldn’t figure out why he offered to call personally from his vacation (a professional courtesy to my husband, with whom he worked 25 years earlier; his personal investment in his patients; he knew he’d have bad news and didn’t want me to have to wait). It doesn’t really matter now—he called and I know. I didn’t have to wait another 6 days (to June 27) for the consultation he scheduled in follow up to my second biopsy.

I was sitting at my desk at work in the last moments of the day when the phone rang. He’d just spoken to my husband (who was at home) and at Dave’s suggestion, Dr. Nath told me, “Get up and close the door to your office.” I knew in an instant the results weren’t positive.

I didn’t hear a lot of what he told me and had to ask him to repeat several things. The diagnosis in DCIS, ductal carcinoma in situ, which is an early stage cancer limited to ducts. “In situ” means contained, and he is hopeful it is in fact contained, but is having a few additional tests run (“stains,” he called them) to be certain there hasn’t been a “micro invasion.” I’ll know when I see him on Wednesday.

For the moment I’m in a holding pattern. Dr. Nath’s suggestion is further surgery to be sure everything is removed, to be followed by a round of radiation therapy. I need to hear everything he has to say on the 27th and then make some decisions.

Do I stay in Dr. Nath’s care and take treatment through Winchester Hospital? Do I take my records and go to a Boston cancer center such as Dana Farber? My primary care physician says that for what I have, Winchester is a good place. She’d encourage Boston is this were more advanced or a “funky” (in her words) cancer situation. I’ll decide when I have more information.

Telling people about this is a mixed bag. Some people need to know—family, some friends, coworkers. I’m not ashamed or embarrassed, just not comfortable telling everyone I know.

I did most of the sharing by phone, including—to my dismay—my mother. She was three hours away at the family home in Maine. I called and tried to invite myself to visit the following day, but she balked and told me not to waste a vacation day. She was trying to be nice. I had to hang up, collect myself, and call her back. Wasn’t easy. I know she heard far less than I’d heard when I spoke to Dr. Nath. We split the distance (she came back to her home in southern Maine) and I drove to see her today, armed with Internet printouts and fact sheets. She’s in better spirits now.

Dave and PJ are my two primary concerns. They will be the ones who have to live with me and this every day. Both are smart, will take an interest and be completely supportive. Still, it’s hard to handle these kinds of things when the patient is someone you love.

We’ll find our way, and we’ll win.

Next time: The journey to this point

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