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Tuesday, April 20, 2010

The diagnosis so far

OK, so here's my story of breast cancer so far:

About four weeks ago I noticed a lump in my left breast when I was at home. I saw my doctor the following afternoon and she confirmed that it was, indeed, a lump, she didn't know what it was, and since I turned 40 this year, recommended that I go in for a mammogram. She sent me to Wake Radiology (the one off of Estes) because she thought they'd be faster than the machinery of UNC Hospital, and the following week I had a 2 hour appointment there, with mammogram films taken of both breasts (but esp. the left) and an ultrasound of both breasts (but esp. the left). A radiologist spent half an hour with me palpating my left breast and told me that there were actually two "masses"--one small one underneath the one that I could feel that was at the surface of my breast and exactly at 12pm if you think of my breast as as clock. He said he didn't know what it was (never comforting) and recommended a biopsy as soon as possible, which meant he would call my primary care physician and she would have to get a referral to get it biopsied.

At this point, I enter the bureaucracy of the UNC machine. Because UNC's hospital system is so vast and scheduling gets booked up quickly. They also have a certain procedure for everything and although I had had films taken at Wake Radiology, they told me that until I had been seen by their mammography dept and been seen by their nurse practitioner I could not get a biopsy appointment. So last week, despite numerous phone calls on my part to various nurses and to my own doctor, I went to the clinic, got more films of my right breast taken, saw a nurse, and then got an appointment for a biopsy on my left breast on Wed, April 14. However, when I went in for the biopsy on my left breast, the radiologist (who was a really nice guy) told me that they are also concerned about my right breast. Back in 2005 I had a mamogram done on my right breast (well both breasts, but my doctor was concerned about the right because of some small lumps there. The 2005 mammogram films turned out to be fine--just some benign calcification points. However, the 2010 films of my right breast show an increase of these calcifications--and what is of concern to the radiologists is the pattern that a few of them have formed--that they seem to be lined up in a row, which suggests that it could be cancer inside a breast duct. So they want to do what's called an excise biopsy of my right breast because a needle biopsy wouldn't yield conclusive results (so they think) given the size (small) and area (deep inside my breast) of the calcification points. The excise biopsy is more invasive--it will require me to be out -- like when you have your wisdom teeth pulled -- and they will also remove surrounding tissue from the points in order to get a full pathology report. If it comes back positive, we'll have to test my lymph nodes on my right.

Back to the left breast. The results on Thursday came back positive for cancer in both left breast masses (tumors I guess we should now call them). They are in the same cancer family and they are medically referred to as "invasive ductal carcinoma" which means that the cancer started inside a duct and then erupted out of it and formed the mass that I felt at the surface of my breast. But it doesn't mean that it has spread beyond my breast tissue to my lymph system--but I'll get to that in a minute.

The next piece of information in all of this is that I found out yesterday from the surgeon they assigned me, Dr. Keith Amos (here's the link to his page) that the type of cancer I have is actually the most common kind (which is good). It is positive for both estrogen and progesteron receptors and is negative for HER2. Which means this kind of cancer is sensitive to endocrine therapy and since I am pre-menopausal it means that they know, definitely, that tomoxifen will be part of my therapy.

Now, I should pause and let you know that I may not be spelling any of these things correctly and that I am using a lot of medical jargon, some of which I sort've understand and other things I just figure I'll ask the "why" and "how" about later. Like the thing about the receptors--I don't know what it means and when I started to ask Dr. Amos he said that for the time being, what I needed to know is that it is very good news. So there you have it.

Anyway, after I told him a bit about the kind of person I am (direct, don't want things sugar coated, doing OK, emotionally, so far, although lets face it, a freak out and total break down is probably going to happen at some point--but for the time being what I said is that I want to know as much as I can about what is going on with me and I want to make decisions that are as fully informed as possible), he could respond to me in the state I am, which I really appreciate. I am in business mode and I think he understood that I wanted to have things laid out as plainly as possible and wanted to be as proactive as possible.

So here's where things stand:

On Wed (tomorrow) I will have a series of appointments from 10:30-3:00pm with various medical specialists in oncology--a geneticist, a radiologist, my nurse practioner, Judy Swayze--who will be my guide and hopefully my advocate through this process, Dr. Amos, and then a meeting with the pre-care unit that will take my blood and run an EKG on me--all necessary prep work before surgery.

On Fri, April 23, I will be going in for out-patient surgery sometime in the late morning. Dr. Amos will do an excise biopsy on my right breast, as well as a sentinel biopsy of my left lymph nodes (the ones underneath my arm) and he will also do a lumpectomy of my left breast, removing the tumors and sending it to this company that specializes in ankatype (sp?) testing (and apparently there's one and only one company that does this kind of specialized cancer testing). The company will try to determine the gene profile and thus the likelihood of recurrence--they will give the tumor a score and they will also crunch some numbers in terms of how likely I will respond to or even need chemotherapy.

[Addendum, April 22, 2010: My friend Sheri says that it's actually called "onco type" testing and I learned from my surgeon that they will only send the tumor away to be tested if there is cancer in my lymph system, because the test is helpful for a determination of chemotherapy. If I don't need chemo (which I won't if it's not in my lymph system) there's no need to send it out. Sheri also explained that HER2 negative vs. positive relates to the aggressiveness of the cancer--negative means it's not as aggressive as positive which is defintitely good news, although there are some amazing drug therapies out there that are very positive for HER2 positive]

There is a possibility that I may not need chemo if it hasn't spread to my lymph system--and it's also a question mark at this point if I'll need or should have a masectomy, but it might be a possibility in terms of a prophylactic measure to prevent cancer from occurring in the future. This is all part of what I'll be discussing with the team of docs tomorrow.

And in case anyone is wondering, Dr. Amos assures me that by 8pm on Friday I should be a bit groggy but pain free and good to go.

Anyway, that's the latest for now. The biopsy results will take 3-4 days to process and the tumor results will take even longer, so I won't have the complete picture until well into next week. Once we know about the right breast, though, we'll be able to make a definitive treatment and surgical plan and move ahead.

Thanks for reading--I know it's long--and hopefully you just skimmed over parts if you have heard it already. If you are dipping in and out of this blog, try checking in on Thursday and next week Friday--I'm sure I hope to have more news by then. And thanks, everyone, for your love and support. I've really appreciated the email message and the phone calls, even if I haven't had the energy to return all of them. Please know how much you all mean to me!


  1. Thank you for keeping us posted, Jen. We love you and want to know how you are. xo

  2. p.s. thanks very much for recording all this info, Jen. It's very helpful to hear about it and I know it will make me better informed as I keep checking myself in the future... KP