Dad's Update - May 21st, 2008

Hello Everyone –
I’ve been very remiss in getting out updates lately, but we’ve got a lot of news to report.
We have finally gotten the results back from Rebecca’s genetic testing for the breast cancer genes. The great news is that she tested negative! This is wonderful not only for Rebecca, but for our daughters and Rebecca’s sisters as well.
But as good as this news is, it doesn’t really narrow down our choices for Rebecca’s surgery. Choices can sometimes be difficult, not just because they are confusing, but because the responsibility for making them and living with the consequences adds pressure.
Let me try to explain by giving you the background we learned this week.
Our genetics counselor told us that about 10% of the general female population in the US will develop breast cancer sometime over the course of their lifetimes. About 1.7% of the general population will develop ovarian cancer.
For females with the BRCA-1 or BRCA-2 genes, however, these risks skyrocket up. Between 50 to 80% of women who test positive will develop breast cancer over the course of their lifetimes, and 40% will develop ovarian cancer. This huge increase is exactly why Rebecca’s tests are such a great relief. Rates of recurrence of breast cancers are impacted dramatically by the presence of this gene. That is why those women who test positive often choose to have a bilateral mastectomy and an ooforectomy (removal of ovaries) – because the probability of recurring cancer is so likely. Mastectomy reduces the chance of recurrence by about 90%.
So why does this make the choices for Rebecca – who tested negative – more difficult? For a couple of reasons. First, Rebecca’s family has a history of breast cancer at early ages (her mom at 50, Rebecca under 50, great aunts, etc.). Geneticists believe there are more genetic causes that are still undiscovered. For women with a family history of early onset breast cancer, the chances are that 20-30%will get breast cancer sometime during the course of their lives (as opposed to 10% in the general population). (There is no statistical increase in the rate of ovarian cancer for women in breast cancer families --still just 1.7% -- which is good news).
So what options do we have to consider? From most severe to least, they are:
Bilateral mastectomy – reduces chance of recurrence by 90%, but is a radical surgery, longer recovery, painful reconstruction, greatly decreased sensitivity, psychological adjustment, higher likelihood of lymphedema (painful swelling of lymph nodes in arms, etc).
Simple mastectomy – reduces chance of recurrence in same breast, but still leaves risk that cancer develops in other one, and similar side effects as above.
Lumpectomy – out-patient surgery, rapid recovery, minimal scarring, no reconstruction, but requires radiation follow-up, and leaves the possibility of re-occurrence of cancer in the same breast.
We are still evaluating all of the statistics and risks, but we don’t have to make a decision for another month or so. We are consulting with our oncologist and surgeon next week.
It is interesting to note that despite the difference in surgeries, and the different risks of recurrence, the survival rates and longevity for each surgery are virtually identical. In other words, even if a lumpectomy patient has a new occurrence of cancer, she is still likely to live as long as one with a bilateral mastectomy because of early detection and advanced treatments.
Our oncologist says Rebecca is most likely a good candidate for lumpectomy, her tumor continues to shrink and is getting “mushy” (and, in the doctor’s words, “mushy is good”.) Lumpectomy is the most conservative treatment, and is the course we were pursuing when we first started the neo-adjuvant (before surgery) chemotherapy.
The oncologist says that recurrence falls into three categories:
Metastatic – the cancer spreads to other parts of the body. At this point, this risk is low (cancer was stage 2, caught early, not in lymph nodes, etc.), but the choice of surgery has no impact whatsoever on this risk – you have the same risk with a lumpectomy or a mastectomy.
Recurrence in same breast – a mastectomy reduces this risk, since the breast is removed, though it can still reappear in the skin that’s preserved. However, with a lumpectomy, this risk is only about 1% per year anyway.
Recurrence in other breast – a bilateral mastectomy reduces this risk also, though with a lumpectomy, the risk is still only about ½ % per year.
So the question before us is this – is it worth it to have a mastectomy or bilateral to improve the odds against a recurrence by just ½% or 1% per year? We’ve got a month to decide.
On the bright side, as of the completion of Rebecca’s 6th chemo session yesterday (her second Taxol treatment), we are now 75% of the way through!! Yeah!! Six down, two to go!!
Rebecca is doing remarkably well – she is strong, very positive, and still very active. The main adverse impacts have been tiredness, tissue and bone pain starting the second day and lasting a few days, swelling, and fast heartbeat/out of breath. Also, Rebecca may lose her eyebrows and eyelashes in the next few days. But, on the bright side, the nausea and headaches are pretty much gone, and she has been sleeping much better. Her spirits have been very good, and she is looking forward to summer! And her hair – including eyelashes and eyebrows will grow back!

Regardless, she is still beautiful.
Thanks to all of you again for your prayers, love, and support.
Mark