Day Three: The Girls gotta Go?

Well, the big meeting with my surgeon came and went, but I haven't yet made a final decision.

My surgical oncologist gave me two important pieces of information for me to consider while I am making my decision:


(1) I have very dense and fibrous breasts. This makes it exceedingly difficult to read mammograms and ultrasounds. The fact that this tumor was not picked up in any of my previous films gives him pause and makes him worry about every other lump and bump in my lumpy and bumpy breasts. Should I opt for a lumpectomy, I will have to be exceptionally diligent for the rest of my life. I will also probably have to have any irregularity biopsied henceforth. He worries too that subsequent malignancies could go unnoticed in the chaos of my breasts until they become a very big deal.

(2) The fact that I am "so young" for breast cancer is an indication that this very well may be genetic and not sporadic. That means that I may have an irregularity in either my BRCA1 or BRCA2 gene, the two tumor suppressing genes that are supposed to help protect the average person from breast cancer. The lifetime risk of breast cancer/recurrence of breast cancer for people with an irregularity in the BRCA1 or BRCA2 gene skyrockets to 80%.


In theory, my cancer is a prime candidate for a lumpectomy. But even without considering Thing 2, Thing 1 caused my surgical oncologist to spend a lot of time talking with me about the possibility of a bilateral mastectomy. In other words, letting go of the Girls.

The surgeon asked me to see a plastic surgeon to go over the possibility of a simultaneous bilateral mastectomy and reconstruction to see if I could be comfortable with the idea. I have an appointment on Wednesday.

Next, I went to the Norton Cancer Center to have a sit down with the-- I don't actually know what she's called-- a Cancer Consultant? She hauled out five pounds worth of workbooks and reading material and once again went over my options.

I was then passed off to a Genetic Counselor. She spent 40+ minutes going over my family history of cancer and explaining how the whole BRCA1 & 2 things worked. Honestly, it was fascinating, like the very best of biology class in high school (and she was good at it; she missed her calling as a bio teacher). By the end of our discussion, she recommended that I have the test. My grandmother had breast cancer, and just about everyone else in my family is either too young or too male to be a good predictor of this genetic problem.

If I didn't already know I was at least going to have to have a lumpectomy (which will exceed my $2500 insurance deductible), I would never have been able to afford this test. It costs $3175 and is performed by only one lab out in Salt Lake City who has the patent on the test (damn Mormons!). The test could take up to three weeks.

If this test comes back positive then there is no choice, really; the bilateral mastectomy reduces my chances of recurrence to 2% rather than the 80+% of a lumpectomy. It also means that we have some detective work to do. First, Ma will have to be tested. If she comes back negative, it goes to my father's side of the family.

If Ma comes back positive, then her sister will be next. If her sister comes back positive, then her daughter, my cousin, will have to be tested. If her sister comes back negative, then my cousin is in the clear. That's the way this works.

If Ma is negative, then we open a bigger can of worms. Dad had four brothers. Three of his brothers have daughters. I have a total of six female cousins on that side who could potentially be at risk.

The BRCA genes also put women at far greater risk for ovarian cancer, and if my test is positive I will have to be tested regularly for ovarian cancer for the rest of my life. In my 40's or whenever I'm done with (or have given up on) having children, it's recommended that I have my ovaries and fallopian tubes removed. Any female family members with the BRCA gene issue will likewise have to do the same. This also puts the men in the family at a slightly higher risk for male breast cancer, pancreatic cancer, and prostrate cancer, and they too will have to be regularly tested.

The chances that my BRCA genes are f-ed up are about 75%. Three-quarters of the women my age who are diagnosed with breast cancer in their 30's have a genetic predisposition to breast cancer. 25% are just flukes.

I've always been an oddball, so I'm rooting for the oddball case now, if only to spare my family... THIS.

So, anyway, no big tears yet today. A lot of information. A wealth of information, actually. Just about all the information that I need to go forth and decide.

The decision is this: I am young. I really, really like the Girls. I am single and divorced and had always kind of imagined that Roommate wouldn't be the last man to enjoy the Girls in their natural state. If I come back genetically hunky dory, I could have a whole rest of my life of good times with the Girls. And if I had a recurrence, I could always take the more drastic step then.

That being said, even if I am genetically hunky dory, I could have a recurrence five years down the line that goes unnoticed until it's too late or super terrible. And would those five years with the Girls really be a good trade off for the worst case scenario later?


And do I want to wait three weeks to find out if I'm genetically clean or dirty?


All of this sort of masks the darker side of the decision. We won't know until I have whichever surgery I choose whether or not the cancer has spread. When they do the surgery, the harvest the nearest lymph node and they biopsy it while I am still under. If it comes out clean, it's all good (pretty much, more on that in a minute).


If it comes out not clean, then they go ahead and remove all of the lymph nodes on that side (which can leave permanent damage to, in this case, my left arm). If the cancer has spread to those nodes, we're looking at cancer that has found its way who knows where. The hunt is on. Chemo is required. And life gets very, very ugly.


All that being said, (back to the "if the lymph is clean" discussion) the surgical oncologist has suggested that he may possibly prescribe chemo or hormone treatment regardless because I am, again, "so young." If even one cancer cell has broken away from the flock and headed into the blood stream it could hang around for decades just waiting to strike who knows where. Better to pounce on the possibility now.


I had kind of thought that somehow they would be able to know if the cancer had spread before the surgery. That I would emerge from surgery facing perhaps radiation or chemo, but also with the knowledge that the bulk of the fight was over. And that may be the case. But it may also be the case that I will emerge from surgery to find out that the fight has just begun.


And that, my friends, has me pretty damned messed up right now.

May 7: Day One

Today I was diagnosed with breast cancer.

The possibility has been looming since November when I went to my doctor because I was having breast pain. I underwent a series of no fewer than five ultrasounds and as many or more mammograms. I developed mastitis. The folks at the Women’s Diagnostic Clinic knew me by name. And in January, because my OBGYN LPN wasn’t happy with just leaving my negative mammograms and ultrasounds alone, I went to see a breast surgeon. He looked at my films and pronounced me “probably just fine” and scheduled a three-month check up. It was on the three-month check up, that I scheduled a month or so overdue, that the cancer was detected. Ironically, I had been concerned over the left breast, but everyone else seemed hung up on a golf-ball sized lump in my right. She’s still there, the Titelist lump, but it’s the irregular mass in my left breast that when biopsied turned out to have ductal carcinoma.

This journey that is only just beginning has been peopled with the very best folk that the medical profession have to offer. Even my LPN at Total Woman clearly cared about my health in a way that you don’t see all that often. I say “even her” because every time I went to Total Woman, I swore I’d never go back. I never waited less than an hour to see a doctor. The general staff there never offered so much as an apology for all the time wasted. And frankly, my OBGYN herself wasn’t exactly the picture of bedside manners; in fact a year ago, I asked if I should start having mammograms and she told me to wait until I was 35. But the LPN knew what she was talking about.

I can’t imagine how many techs at Women’s Diagnostic I’ve interacted with. And even though this may be a misconception, I feel like I have one tech in particular to be grateful for. Julie, who ran my follow-up ultrasound, the ultrasound that I believed would release me from concern for at least another year, was the one who saw the lump and who disappeared for a half hour (I admit I was annoyed, not knowing why she was gone) to corral a doctor and confirm her suspicions. It was Dr. Stevens who was impossibly sweet—it’s hard to imagine a doctor with a kinder, more soothing tone—and urged me to immediate action. And today, when Dr. Stevens went home sick, it was Dr. McLaughlin, the first doctor I dealt with there, who called me, unbidden, to express his sadness at my news and answer any questions that I have.

Today was a tough day at school. I was waiting for the biopsy results and found out that my job next year was changing and that I would have to share my teaching of American Lit with Marti, an iconic, brilliant teacher who intimidates me to no end—part my insecurities, part her personality. She is not a woman with whom I share a good relationship, although I’ve been making a concerted effort all year long. All day we went back and forth together about next year; honestly, I was trying to please her, but I was also on the defensive. And when the news came, she had just left me, and I knew she was just next door, and without thinking I went straight to her. With the most intimate, personal news possible. I find it hard to believe. But I went in her room and I just said, “I just found out I have breast cancer.” And she hugged me and she said, “But you won’t soon. It will all be okay.”

I had to then enter my classroom half full of next period’s student. I wasn’t crying. I didn’t really cry until around a half an hour ago. But I was struck. “Are you ok?” asked Katie Beth.

“I just got some really sad news.”

It was hard not to tell her. Honestly, if I had to choose a single kid to confide in, it might be Katie Beth. She asked me what I was wrong and I said that I couldn’t talk about it now. And not wanting her to think that I didn’t trust her or care about her, I touched her arm and whispered, “We’ll talk about it later, I promise.” Because we will. At some point, I’ll have to tell them all. I don’t want to just disappear. Lord knows, should anything terrible come of this, I don’t want to be the teacher who just disappeared.

Before I got the news, between the troubling ultrasound and the biopsy, I’ve thought a lot about that—what do I tell my kids? How do I deal with these last few weeks of school before summer? If I had my druthers, I’d just pronounce class over. They’ve been a great class. We learned a lot. They’ve jumped through all the hoops I’ve set before them. Let’s just call it a day. But that’s not my decision to make.

I came straight home and told Jason and the day has unfolded quietly since then. My mother was stronger than I had given her credit for being. Beth called. Pat and Ralph just emailed. I puttered in the garden for a while. And I cried after watching the season finale of Eli Stone.

Probably not a wise viewing choice, but how was I to know that he would nearly die and only be brought back by his will to live and the strength of love of his friends and by his faith in God and his knowledge that he had done good and still had more good to do??

Because those are the kinds of questions that I’m stuffing down right now. Should this turn out badly, how strong is my will to live? I don’t have many friends and my family is so far away. I don’t have a family of my own to live for. My faith in God is weak and utilitarian. How much good have I done? The answer is not much. And while I have always believed in my potential to good or even great things, I’ve not done much to live up to even a meager shred of that potential.

So I’m frightened. Not about what it is but what it may be. If it is just this, I can be strong, I can power through this. If it is something worse, I worry about my own determination and faith. Not just in something greater than myself, but in myself.