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.