Initial Diagnosis and Treatment Plan

The facts and more detail than you would probably ever want to know

Michael and I went to see Dr. Rosenbaum Smith the same afternoon she gave me the diagnosis (thanks to Michael’s cooler head prevailing and insisting that I not stay and try to work, but rather go figure out what we had to do next). I do not yet know which “stage” I am in – until a few more tests are performed, it is difficult to tell. I have had several of the tests already, and should know more sometime around October 25. These test results will influence my treatment.

Already, I do know that my tumor is 2.7cm long. At that size, and at my age (33), aggressive chemotherapy is strongly advised. And because of the size and location of the tumor, my doctor has recommended “neo-adjuvant” chemotherapy, which means chemotherapy before rather than after surgery. The benefit is that this may shrink the lump to a size that could be more easily removed in a lumpectomy rather than a mastectomy. Because of its current size and location, removing the tumor as is would disfigure the breast.

I spent the week on a whirlwind tour of doctors’ offices. After my initial meeting with Dr. Rosenbaum Smith (the breast surgeon) on Monday afternoon, I went for a mammogram (my first) on Tuesday. This test looks for other signs of tumors; fortunately, none were found. However, this does not mean they are not there, so on Wednesday I went for a full ultrasound of both breasts (the earlier ultrasound had been only of the tumor). This also looked at my lymph nodes, which, at least in the initial imaging, look normal. The third imaging test used in conjunction with the mammogram and ultrasound is an MRI, which I will have on Wednesday October 25. All of these taken together will give the doctors a clearer picture of the tumor and the health of both my breasts.

At the same time I had the ultrasound, I also had a core needle biopsy. This removes pieces of the tumor tissue for testing – I will receive the results later this week. This test looks for the tumor’s hormone receptivity and the presence of a protein called HER2/neu, both of which will influence my overall treatment.

Since I am already fairly certain I want to pursue the chemotherapy before the surgery, I opted to have a titanium clip inserted into the tumor at the same time as the radiologist conducted the biopsy. This is because the lump may shrink dramatically during chemotherapy – in some cases, it disappears altogether. But even if this happens, the surrounding tissue must still be removed and tested, so the clip allows the surgeon to locate the original center of the tumor no matter what develops during other treatment.

I will also have to have a lymph node test to see if the cancer has spread beyond the tumor. From the imaging tests so far, it looks like the news will be good - the cancer appears to be confined to the tumor. But only removal and examination under a microscope will be able to determine this for sure. So in the next week or two, my breast surgeon will conduct a "sentinel lymph node" test, which allows her to remove and examine only the three or four lymph nodes that have the primary duty of filtering the fluid that drains from the breast. If any nodes show signs of cancer, it would start in these. This is an in-office surgery under local anaesthetic and sounds like a fairly minor (albeit important) operation.

Even the breast surgery itself is not overly worrying – as my doctor assured me in my first meeting, and the plastic surgeon reassured me when I met with him on Friday, even if for some reason I have to have a double mastectomy, they can perform reconstruction then and there, and I will wake up with the old breasts gone and new (perkier!) breasts in their place. But the chemotherapy is frightening. Given the course of medicine they recommend in my case, I will almost certainly lose my hair. I may lose eyebrows and eyelashes too, along with body hair. Although they actively work to prevent the nausea that often accompanies chemo with other drugs, I will undoubtedly be more fatigued, a situation many people compare to having mild flu…for a couple of months. Most alarmingly, chemo can have a negative effect on fertility.

Understandably, I was a little apprehensive when Michael and I met the oncologist on Wednesday afternoon to discuss the chemotherapy. But he was very reassuring. I will go in for treatment once every two weeks over probably 16 weeks (possibly 20, depending on the full diagnosis). The nausea sounds fairly straightforward to control. Most of his working patients come in on Friday mornings, so time off work is limited to about 8 days over the course of the treatment. Even the fertility issue can be helped by a drug given in conjunction with the chemo that stimulates early menopause. Although trials are limited, they suggest that premenopausal women who take this drug before chemo “protect” their ovaries and egg supply during the brief period when the treatment is administered, making it more likely that they will return to menstruation and ovulation post-treatment.

As an insurance plan, we are also pursuing in-vitro fertilization with Dr. Oktay at the Cornell Weill center in New York, who specializes in fertility preservation for young women with cancer. Normal estrogen-based ovarian stimulation (as well as normal pregnancy) can be dangerous for cancer patients, since estrogen can trigger tumor growth. Instead, in about 8-10 days, depending on my cycle, I will start taking Femara (Letrozole), a non-hormonal cancer drug that also has the effect of stimulating the ovaries to produce more eggs. The doctors will harvest the eggs and fertilize them with my husband’s sperm, then freeze the embryos so we can implant them later if needed.

Statistics around infertility and cancer are cloudy. My understanding is that I do have roughly a 30% chance of never having another period after chemotherapy, but that does not mean I have a 70% chance of getting pregnant naturally. Even if everything does return to normal after the chemotherapy, pregnancy may be delayed because of ongoing treatments. Thus pre-chemo IVF seems like a wise step, since we know we want to be parents as soon as we can after getting through all of this.

I have also met with a genetic counselor and performed a test for two genetic abnormalities in genes known as BRCA1 and BRCA2. Since I am unusually young to be diagnosed with breast cancer (.5% risk for women under 40, vs. 4% for women ages 40-59, and 7% for women ages 60-79), the presence of abnormalities in “the breast cancer genes” may explain why I now have the disease. However, these genes are only present in about 10% of breast cancer patients. Women with these abnormalities have as much as an 85% lifetime risk of developing breast cancer, and if I have them, the chance of developing cancer in my other breast is greatly increased. There is also an associated heightened risk for ovarian cancer. If I do test positive for either of these genes, I will need to consider prophylactic surgery (i.e., a double mastectomy).

So when does this all start? This week I will learn more about my test results, and will also speak with a few more doctors to get other opinions on the best course of action. The IVF treatment is time sensitive and is the first priority – it looks like that will begin this coming weekend or early next week, which means that chemo would begin in mid-November, ending in late February, with surgery in early March.

I will do my best to keep this site current with diagnosis, treatment and progress, and apologize in advance if I end up “oversharing,” as I am sure I have already done in the eyes of many, or at least one. Sorry Mom…