Sunday, April 26, 2009

Drs. Tchou (choo) and Wu (woo)

Treating cancer takes more than just one doctor. In fact, it takes an entire medical team. For Karen, that includes a surgeon (to remove the cancer), a radiation oncologist (to treat the cancer with radiation), a medical oncologist (to guide the chemo treatments), a plastic surgeon (to reconstruct the breast(s), if necessary), and an internist or primary care doctor to deal with everything else in between.

First up, the breast surgeon, Dr. Tchou (pronounced choo). Dr. Tchou examined Karen and the MRI results and was concerned that the tumor was close to or possibly attached to the chest muscle. This could be a bad thing -- for a lot of reasons. First, removing it might first require chemo to shrink the tumor. Second, detaching it from the muscle could mean cutting into the muscle (that hurts). And third, a tumor that "involves" the chest wall or muscle means you go directly to Stage III cancer. It was not possible to tell for sure from the MRI whether the muscle was involved. More consultation with Karen's medical team of doctors would be necessary...Karen's case (and her tumor) were going to be presented to the "tumor board" (picture a bunch of doctors sitting around a big table deciding whether you have a good tumor or a bad tumor). Anyway, fast forward...the "tumor board" thinks it looks OK and suggests that the surgeon proceed with a lumpectomy. A lumpectomy and "sentinel node biopsy" is scheduled for May 13th.

On deck, Dr. Wu (pronounced woo). Thankfully, Karen has decided she doesn't need Dr. Wu's talented skills just yet (OK...well, maybe just a little lift here or there would be nice). Instead, a lumpectomy will "conserve" the breast (that's a nice word, "conserve", isn't it?). Besides, the reconstruction options weren't all that appealing. Now, most husbands might get excited about the prospect of breast implants for his wife. But trust me, you don't want to go there. This visit was not a good one. In fact, it was one of the few times so far that Karen has broken down. Perhaps it was the thought of a "shark bite" scar on her buttocks (yes, that's exactly how the doctor described the result of taking tissue from your ass to use it to reconstruct your breast). I told you that this was not a good visit.

As we discussed reconstruction options in the event that Karen chose to or had to have a mastectomy, we learned about various options, including 1) using Karen's own tissue to rebuild the breast (she's too thin to take anything from her tummy, thus the buttocks were proposed) or 2) using implants. With implants, talk turned to such things as inflating expanders, symmetry, silicone and saline. But implants were not without their own set of issues and complications. Overwhelmed with all the information -- not to mention a lovely photo album of before/after photographs of other patients -- it became too much to bare. Enough! Meeting over. Done. No shark bites (whatever that looks like)!

The medical team is still being assembled. The radiation oncologist was consulted early on and will enter this drama again in a later act. The use of radiation in Karen's case is still somewhat uncertain. Because Karen is no average case -- I mean, her cancer is no average case -- doctors must also consider whether or not radiation also poses a risk because of her connective-tissue disorder (CTD), Ehlers-Danlos. Radiation is a risk for people with CTDs. Whether her disorder is one of them is still an open question. It's an important question obviously since radiation is a key part of treatment. With radiation, you may be able to keep your breast(s). Without it, we're back to the wonderful world of Dr. Wu and her shark bites. But I'm getting ahead of myself a bit. Radiation doesn't come until after chemo (first they poison you, then they blast you with radiation). This means that while Karen is enjoying chemo, she and her doctors can ponder the radiation question some more.

So, this all sounds rather awful and scary. It is. But Karen is facing it bravely. But, no shark bites for her.

Friday, April 17, 2009

"The bad news...if there is any bad news..."

Karen has breast cancer. But to be more specific, her diagnosis is: Dx 04/15/09, IDC, ER-/PR-/HER2-, 1.5cm, Grade 3, nodes-TBD, stage-TBD.

That's all short-hand. I quickly learned that most breast cancer survivors use short-hand like this on discussion board postings or blogs to let others know about their diagnosis, and later, about their treatment plan. To the average person, it means little. So let me explain:

Dx = date of diagnosis

IDC = type of breast cancer (there are several); IDC stands for Invasive Ductal Carcinoma. This means the cancer has spread outside of the milk ducts in the breast to the breast tissue. About 80% of all breast cancer is IDC. So, at least she's in the majority here.

ER-/PR-/HER2- = This is known as Triple Negative Cancer. It sounds scary. It is. What this means is that Karen's type of cancer is not fueled by estrogen or progesterone. Nor is it sensitive to growth signals from the HER2 protein -- whatever that means. Anyway, the doctors can't use hormone drugs to starve the cancer or target the HER2 receptors. This means that chemotherapy will definitely be a part of her treatment plan. Only 10-15% of breast cancer is triple negative (3N). Karen's now gone from being in the majority to being in the minority. I'm sure we'll learn a lot more about 3N in the weeks ahead.

(Sidebar here: when Karen's first doctor shared the results of the pathology report with us, she said, "The bad news, if there is bad news, is that the cancer is not receptive to estrogen." What does she mean "if there is bad news"?...Did I miss the goods news somewhere here? She has cancer for christsake? She went on to tell us that "you'll be offered chemotherapy" ...."offered"....she made it sound so pleasant...sort of like "you'll be offered coffee and pastries." Let's see...I'll have one order of chemo and a side order of radiation...thank you very much! Having said all of that, she is a very good doctor and our decision to go to Penn had nothing to do with her offer of chemotherapy).

Grade 3 = Cancer tumors receive a grade of between 1 and 3. The grade tells you something about how the tumor cells are growing and dividing. For example, "calm, well-organized growth with few cells reproducing" is considered Grade 1. OK, we know that there's nothing "calm and well-organized" about Karen. She's not a Grade 1. With a Grade 3 tumor, the cells are growing and dividing more quickly and they are very disorganized. This, unfortunately, is Karen. But I'm told that the cell growth is all "relative" and that the grade doesn't mean all that much in the "big picture." I'm not sure about you, but that doesn't put me anymore at ease. In fairness, I've also learned that the higher the grade, the more vulnerable the cancer is to treatments like chemo and that's encouraging. See, there's a good side to everything.

1.5cm = tumor size; that's on the small side; under 2 cm is a good thing, I think. The tumor size is a factor in the stage of the cancer. The larger the tumor, the higher the stage.

Nodes = refers to how many lymph nodes are found to have cancer. We won't know this until after surgery and a biopsy of the lymph nodes they remove. And depending on the initial results, they may have to remove more.

Stage: Can't know this until we have the results of the lymph node biopsy. The stage of the cancer -- which can range from 0 to IV, determines in part, the treatment plan. Three pieces of information factor into the stage: tumor size, # of lymph nodes "involved" and whether the cancer has metastasized anywhere else in the body. Based on tests so far (chest x-ray, MRI, bone scan), no signs of cancer elsewhere -- very good sign (more on staging later...let's not get ahead of ourselves).

I've probably violated every HIPAA rule in sharing these details. It's funny how we sign all the paperwork to guard our privacy and then turn-around and blast it over the Internet for all to see. It's also funny how we used to write in journals and diaries and keep them under lock and key...or at least hidden under a mattress. Today, we simply write blogs and let everyone in on the details of our lives.

Thursday, April 16, 2009

To Blog or Not to Blog?...that is the question.

I thought for days about whether to blog about Karen's cancer "journey". It would be a first for me -- the blogging, and Karen's cancer, of course. I'm on Facebook, Twitter and LinkedIn, but rarely "update" there. What would I say anyway? Do I really want everyone to know what's going on in my life? Each day? Each hour? Do they even care? Why would they care?

But this is different. Living with and fighting breast cancer is pretty important. People do care. Karen's family and friends care. So, by blogging about it I might be able to accomplish several things: 1) Keep our friends and family abreast (pun intended) on Karen's "journey". (I can't get used to using the word "journey"'s just weird, but saying "cancer" isn't exactly easy either); 2) build awareness along the way --- girls, remember to "feel your boobies"; and 3) hopefully, share some funny stories, of which Karen will provide an endless supply.

I struggled with a name for the blog. Maybe this would be a lot more interesting if I just titled it, "My Life with Karen." Anyone who knows Karen, knows that life with her is an adventure all its own. The stories would be so much more interesting and funny. Some stories might even be as scary. "My Wife with Cancer"?? Boring and depressing? Perhaps. But "My Life with Karen" sort of misses the point.

Karen will need to be reminded that this is my blog. Yes, it's her cancer, but my blog. She's a born editor and a perfectionist, so she'll want editing rights. But she'll have to settle with the rights to strike posts that talk too much about bodily functions (I did say that this blog would include "the good, the bad and the ugly", didn't I? After all, this is cancer. Cancer is ugly. Trust me, we're going to see and hear about the "ugly").

I'm not sure how this blog will evolve, or whether it will evolve at all. I can't tell you what it is, but I can tell you what it isn't:

-- It's not a blow-by-blow account of every up and down of this "journey."

-- It's not a woe-is-me/us drama (everyone has a cross to bear at some point; this is ours).

-- It's not a breast cancer crusade (though if it helps bring more attention, great).

-- It might not always be medically accurate (I'm not a doctor and this is complicated stuff).

-- It's not all about Karen (what?!?!). OK...mostly about Karen.

I have no idea where this will go or whether I will even stick it out (the blogging that is...Karen and the cancer are locked in for the duration). You're welcome to tune in or tune out. It's your choice.

Wednesday, April 15, 2009

Spring Awakening; Rude Awakening

It's spring. The azaleas are blooming with bright pink flowers. The grass is growing greener (well, at least in other people's yards). The sun is setting later in the evening and warmer weather is near. But this year, spring awakening also brings a rude awakening.

And so it begins....the "journey," that is. That's survivor-speak (or so I've learned) for people living with cancer. It is not a journey we planned to take. In fact, we don't even know where we're going. It may be a long journey and it won't be fun. But funny things will certainly happen along the way. And I hope to share them here -- not only the funny things, but the good, the bad and, now and then, the ugly.

Actually, the journey began just over a month ago, April 8th to be exact, when my wife, Karen, unintentionally grazed a lump in a relatively bony area of her chest just above her left breast. When she came home that day and showed it to me I could feel it, but even scarier, I could actually see a small marble shape just under her skin.

"Where the hell did that come from all of a sudden?" I asked out loud.

"How could you not have noticed it before?" I said. I tried to convince myself that the lump wasn't actually in or on her breast. After all, it wasn't in her breast tissue. Or was it?

She replied, "Uh, honey...that's where my breast would be if I wasn't 47!" OK, so I felt a little stupid and maybe a bit embarrassed. The least of my worries.

That's where it began. On a typical spring day in April. And just weeks later I'm using words like "journey". Ahhhhhh!