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Thursday, April 29, 2010

Biopsy results are in: the good, bad, and definitely ugly

So the biopsy results came back early (I left Ocracoke yesterday once I got the phone call because I need to meet with folks on Thursday, today). I'm going to summarize the important parts in the second paragraph and then include more details in the paragraphs to follow. I should also note that since I have a 2pm appointment today with an oncologist there will be a part II either tonight or tomorrow a.m.

The good news is that the cancer is not in my left lymph nodes and they are fairly certain that it's not in my right either. The bad news is that there is cancer in my right breast--DCIS: ductal carcinoma in-situ. It is the best case scenario cancer, however, because it typically stays inside the duct and doesn't get to the lymph system--and mine is definitely in the duct, so the staging of my right breast is: STAGE 0 (ZERO). The other bad news is that instead of 2 smallish tumors it turns out that they removed a single barbell shaped mass in my left breast measuring 3.2 cm. The ugly news is that in both removing the mass in my left and doing the excise biopsy of the DCIS in my right, they were not able to get clean margins. Which means that they were not able to remove all the microscopic traces of cancer in either breast. Which means I need more surgery in both breasts to clean up those areas. And it also means that I still have cancer in my body and that they are worried that despite not finding it in my lymph system that it will pop up in other places in my body (like my chest wall) and so they really want me to start a treatment program (either chemo or radiation or perhaps even a combo of both--that will be discussed in detail below) as soon as my body has healed from these surgical procedures, which means the Tuesday after my wedding weekend.

[Aside: I know that some of you reading this blog may not know that Matthew and I are getting married in about a month. Actually, we're getting married in exactly a month from now--with lots of family and friends coming in from out of town. And if you are one of those out-of-town folks, yes, the wedding is still ON--you don't have to get a refund on your plane ticket or cancel your hotel reservations--any treatment program I start will not start until the Tuesday after the wedding, but I will DEFINITELY be starting something the Tuesday after the wedding, which means it's even MORE important that we all celebrate and have a good time.]

So what does this all mean and where do I go from here?

As I said above, I have a 2pm meeting with Dr. Lisa Carey at the Lineberger Center today. Matthew and Beth will be coming with me--and Matthew already created 2 pages of follow-up questions from the notes I took while on the phone with Dr. Amos. The team of cancer docs met yesterday (as they do every Wed. for their morning cancer conference) and they discussed my case and made various recommendations. Unfortunately, I fall into what they consider a "gray" zone.

[2nd Aside: I do this for a living--research and write about ambiguity and gray zones but DAMN IT, when it comes to cancer I do not want gray--I want black and white binaries!]

What Dr. Amos means is that there are several different options and approaches to take rather than being clear cut. I could, perhaps, still just do radiation with a follow-up series of lumpectomies. I could do chemotherapy (a more aggressive, systemic treatment) with follow-up surgery of lumpectomies or mastectomies. I could remove my left breast and leave my right intact after cleaning up the margins. We could try to do more lumpectomies of both breasts with some reconstructive surgery. I could do a bi-lateral (double) mastectomy and either do reconstructive surgery or not. I could do a series of both chemo and then radiation and then surgery. Dr. Carey will be reviewing all these treatment possibilities with me today as well as the stats involved.

And the stats are all about survival and recurrence, which they tend to measure in 5 year intervals.

For someone with Stage 2 cancer, the survival rate (with some type of treatment) is 86%. Whether you do radiation with lumpectomy or chemo with mastectomy, your rate of survival is the same. Doing a mastectomy (a more radical surgery) doesn't help prevent against rate of distant recurrence (metastasizing in the lymph or other areas of the body--which is what the real concern is about because once the cancer gets to other areas of your body it can mess with your major organs and you can die); mastectomy only prevents against rates of local (breast tissue) occurrence.

And doing a bilateral/double mastectomy is no small thing. It's more than just the loss of your breasts--there is some significant physical therapy involved because they are also removing some muscle [Updated, 4/30: actually, according to my Aunt Joyce, they only do it if they didn't get clean margins there] and you have to retrain your arms to move back (think of rowing a boat--that movement--that's going to be hard/difficult/painful--in my world, it means when can I swing a golf club again because it's the backswing that will kill me). And of course, there's also the loss of my breasts. I have to admit, being a smaller breasted woman, I've never given my thought to my breasts. I mean, I've never obsessed or bemoaned them. They've been fine and for the most part I've always hated wearing bras because I find them constricting and am small enough not to worry about such things.

[3rd Aside: I recognize that this is all probably more information than anyone really wants about how I think about my body--and perhaps esp. awkward for certain of my readers, but I'm really going to be no holds barred about this stuff right now because it's where I'm at.]

But women's breasts are intimately connected with their sense of feminine and female identity. And I'd be lying if that didn't deeply affect me. That as much as I may not seem "vain" about my breasts, and as much as I certainly would be more than willing to do bilateral mastectomy in order to give myself the best chances of survival, it's still something to think carefully about and to recognize my own sense of loss and grief about. And my own discomfort, emotionally, about what it will be like to have them removed and to live my life as a breastless woman.

Then there's the treatment. I was really hoping for the best case scenario, meaning no chemo. Because chemo wracks your body. You hope to kill off the bad cancer but you also end up killing good cells too--which is why so many people throw up with cancer and have their hair fall out and get really tired. Of course this also depends on the dosage--how strong a treatment regime they use. And not everyone loses their hair. One aunt and my uncles had their hair thin rather than fall out. But I must confess that I am rather vain about my hair. It is, in fact, the only bodily part of me that I'm truly vain about. I used to fly to Boston for the first 2 years after moving to NC to get my hair cut because my old hair dresser was in Boston and I didn't trust anyone in NC to cut my hair.

[4th Aside: Luckily (thanks to Jane D) I found David Sutton (of DB Suttons) and now I don't have to have such a huge carbon footprint--I should note that my trips to Boston weren't just to cut my hair--there are a lot of conferences in Boston and I still have friends there, so I was able to just go once every 9-10 months.]

Luckily Beth and I found a website where you can cut off a 10 inch (or more) ponytail and they will make a wig of your own hair. And since I've been growing out my hair for the wedding, I should easily make the 10 inch mark. Yes, I know, a silly thing to worry about compared to my overall health--I mean, I know your hair grows back. But I just can't rock the scarf--I HATE those scarves (please no one send me a head scarf!) and the baseball cap look is only going to get me so far.

The other thing about chemo, aside from its side effects, is that it takes a long time. It's 4-6 months. And then if I need radiation, I wait 3 weeks and start that regime. And then I wait another 3-4 weeks and I do surgery. Which oddly enough (minus radiation) places me about winter break to do surgery, which means I may not have to take any time off from teaching. Although that's another thing I'm trying to figure out--should I ask for some kind of teaching reduction if I do the chemo treatment (and if they recommend it--which Dr. Amos said everyone was leaning towards recommending in my case). How will I tolerate the chemo? How often do I have to go in? How sick will I become? How much help will I need?

These, and many more questions, are what I'm trying to grapple with. If you have opinions, feel free to leave them in the comment section. And if you are still reading, you are a real trouper because this was REALLY LONG (that's why I do the summary in the 2nd paragraph). So I think it's time to end, but I'll leave you with an image from the Ocracoke (where I'm headed back to this weekend and where I'll be through late May):

P.S. If anyone is wondering (as several people I've spoken with have wondered about) why they are advocating for chemo and then surgery, this is taken directly from Dr. Lisa Carey's faculty profile at the Lineberger Center:
"[T]he members of the UNC Breast Center have a long commitment to improving treatment of early (nonmetastatic) breast cancer, and have been early investigators in the use of neoadjuvant, or preoperative, chemotherapy for breast cancer. In part based upon work performed at UNC, we now know that women do just as well if their chemotherapy is given before surgery as after, however the chemotherapy-first approach means that they are more likely to save their breast. In addition, with preoperative therapy it is possible to tell if the drugs are working since the tumor is still measurable when the chemotherapy is given first. Part of Dr. Carey's clinical research program investigates new drugs and combination of drugs in preoperative therapy."


  1. TOES! :3

    Alas, I don't have any informed-ish opinion regarding the treatments you're looking at, but I do wish you all the best in being able to choose an option that will be best for you.

    Also, the getting married thing? Way cool! Congratulations and I hope y'all have a spectacular time!

  2. What about a snazzy, funky French beret instead of a scarf? If, in fact, it turns out you need it. You have the tons of style necessary to carry off that look!

  3. You should find out what your insurance pays for in "capillary" expenses, as both my mother and aunt found when going through chemo that wigs can be very fine and cheering. Especially for interior wear, there also are the turbans. My aunt was depressed at first by the idea of turbans. Thinking of Simone de Beauvoir, whom my aunt greatly admired, and her ubiquitous turbans, I took the opportunity to tease her gently. “Do you mean you are going to give up your lifelong ambition to look like Simone de Beauvoir?” While she quickly informed me that the hospital turban was not at all the same kind as what Beauvoir sported, I did notice that she seemed more relaxed about wearing the turbans in the period that followed.

  4. You're getting married! Mazel tov!!!!!!

    I admire your courage -- not just in dealing with what you're dealing with, but in writing about it and sharing it.

    Keep hanging in there, Jennifer!

  5. Hey Jen Ho, So great to get the whole scoop. Thanks for taking the time to write and share with folks (with me!). I just read it all in one sitting since I finally had a slice of time (Wes napping). I love you and send you "healing energy."
    Love the the pedicure, by the way.