Diagnosis and Treatment Course

For the many of you who heard my account through the grapevine or telephone tree, here's the story and some of the bc lingo I've picked up so far, as well as a description of my probable treatment regimen. I would also recommend the advocacy website www.breastcancer.org for additional information about bc, or to read or even join the discussion boards. I would have been completely lost during these first, terrible days without the support of other bc patients and survivors that I found there, and the research information is both cutting edge and easy to understand.

My diagnosis, briefly:

• IDC – invasive ductal carcinoma, the most common form of bc
• Invasive tumor size: 1.7 cm
• Also present: DCIS (ductal carcinoma in situ, or non-invasive cancer) with extensive necrosis, meaning that the cells were rapidly growing and dying from lack of nutrients, and on the verge of becoming invasive, about 40-50% of the total mass removed
• Grade 3, poorly differentiated – meaning very fast growing
• ER-/PR-/HER2-: negative for all hormone receptors (estrogen, progesterone, and HER2), also called “triple negative,” meaning that hormone therapy is not an option for me
• Preliminary Stage 1, assuming no lymph node involvement
• This is a nasty little beast, aggressive and fast growing, but it seems that we caught it early enough to be feel very positive about the outcome

My planned treatment, briefly:

• Re-excision and sentinel node biopsy (SNB) on 2/26: the re-excision (basically, Lumpectomy, Take 2) will take a bit more tissue from around the original lump, to make sure there are no more cancer cells there, while the SNB will check the first nodes in my lymph node system (sentinel – like the “guard” of the lymph node system, get it?) to ensure that the cancer hasn’t started to spread to other parts of my body
• 4 months dose dense chemotherapy: chemo is non-negotiable for me because of the size of the tumor (chemo is rec. for all IDC over 1 cm) and b/c of the trip neg status (I can’t have the drugs that specifically target hormone positive cancers). Dose dense means that every 2 weeks I will receive the amount of drugs typical of a 3-week regimen. Because of my age and health (um, except for the cancer), I’m an excellent candidate to tolerate the stronger dosage; they will give me medication to increase my white blood cell count in between chemo treatments since chemo reduces your ability to fight infection. Yep, I’m gonna lose my hair.
• 6 weeks of daily radiation to my left breast: rads will knock out any cancer cells that may be still staggering and stumbling around my breast after the chemo. Side effects of radiation are pretty localized and are similar to intense, regular sun exposure. You guys have seen me in the sun, dunked in sunscreen and wearing as many clothes as possible to protect my skin, so yeah, it won’t be pretty!
• I will get a second opinion regarding the chemo, rads, and other follow up care at Memorial Sloan Kettering once my surgery is over. Memorial is the top cancer center in the country and is a leader in research, so it will be very valuable to speak with an oncologist there (particularly about any newer drugs for trip negs like me). However, my current surgeon, Dr. Paul Ian Tartter (for anyone who wants to look up his creds!) is a top notch surgeon, named the best breast surgeon in the city in 2002 and 2003, and is a pioneer in the SNB procedure that I am having on 2/26.

My plea:

Please, all of my friends, sisters, cousins – do regular self-exams and don’t wait to see a doctor if you find something! You are not too young to get breast cancer. I’m 30 years old, I have no family history, I don’t smoke, I’m not overweight, I have two children (and breastfed them), I eat a lot of unprocessed and organic foods…It DID happen to me. It CAN happen to you.

My diagnosis story, longer version:

In early December, I found a lump in my left breast while showering. I was not doing a breast self-exam, just the usual showering routine, and I felt it, a definite hard bump, rather high on my chest and close to the surface. At first, I dismissed it as having to do with breastfeeding, hormone changes after Finn’s birth, or even a fibroid tumor (these are common among the women in my family, although we do not have any history of bc, and I had one checked myself about 6 years ago). But while we were in Michigan for Christmas, it started to feel tender, and I decided that I’d have my OB/GYN take a look when we returned to the city.

On January 10, I saw my OB/GYN, who was sure I had a blocked milk duct. She tried to aspirate it (that is, suck the fluid out with a needle), but got only a bit of blood. Hmm. She sent me upstairs to the Comprehensive Breast Center to see a breast surgeon. They were able to take me right away, so I bundled poor Finn into another examining room, got into another hideous pink gown, and waited. Nichole, another PA, took my medical history (healthy – no major illnesses, operations, allergies), family history (nothing there), personal history (30 years old, two kids, currently breastfeeding). Dr. Tartter came in, read through all that stuff, looked at my lump, and decided that I must have a blocked milk duct, or maybe a cyst. He used a portable ultrasound machine to find the best place to attempt to aspirate it, saying that sometimes if the milk is clotted, it’s hard to get it with a small needle. The needle he pulled out looked rather like a plunger – I was grateful for the local anesthetic he gave me first!

“That’s not what I was expecting,” he said. I peeked down at the needle sticking out of my chest and saw that he was pulling up more blood. “What is it?” I asked. “Old blood and debris,” he answered, “like from a trauma. Are you sure you didn’t do this to yourself? Some kind of accident or bruise?” I thought that I would have needed a significant thump to the chest to end up with such a lump (and surely I would have remembered it?), but it turns out that, while breastfeeding, it may not take such a punishing blow – something about expanded blood vessels. Okay, so maybe Finn gave me a little headbutt while nursing.

So off the blood went to the pathology lab. Dr. Tartter’s thought was that it was most likely a hematoma (like an internal bruise) or, worst case scenario, a rare papillary cancer. This seemed unlikely, given that papillary cancer is almost exclusively restricted to post-menopausal women, but nevertheless wasn’t too frightening, since it is also a non-invasive cancer – we could treat it and move on with our lives.

The path results came back the following week and were “unable to rule out papillary neoplasm.” Best plan was to get the thing taken out so that the lap could take it apart and figure out what it really was. I set a surgery date of 1/29 for the lumpectomy. I had already started to give Finn a few bottles of formula each day, now I stopped nursing him completely. He was 6 months old, a good start, even though I was sad to stop.

A mild anesthetic is not quite what I thought it would be. Apparently, it means that you continue to breathe on your own throughout the procedure. The surgery went off without a hitch, about 45 minutes long, but the recovery was tougher for me. The average recovery time, I was told, is about 45 minutes; mine was 2 hours. During recovery, my heart rate dropped below 40 beats/minute, causing the nurses to prop me up and shake me a bit until it came back to “normal.” They asked me if I work out a lot – ha! – then suggested that I keep in mind my low tolerance for anesthetic for any future operations I might ever need. I had only a little soreness, took Extra Strength Tylenol, and was able to carefully lift and carry Finn later that day.

The path results took an agonizing two weeks to come back. Dr. Tartter had gone on vacation, so I was calling Wendy, the PA, for any news. She told me that the lab had said it was a very difficult, complicated case, and they were running every possible test and scan on it to get a complete picture. Somehow, I wasn’t worried, though I started to get irritated with the delay. Wendy called on 2/12 with the news of my cancer. I’ve spent the time since then learning everything I can about my diagnosis and treatment options, alternating between feeling hopeful and dreading death, crying and laughing (sometimes at the same time), hugging my babies, and getting ready for whatever it is that’s coming. But now we’re ready, and we’re feeling good.