Sit on it, cancer!

July 10, 2012 //

Okay, most of you know that I do a lot of work with parents on how to deal with those lovely toddler/preschool tantrums. And I’m not talking about the typical ones, I’m talking about the kids who have the really intense, long, and frequent tantrums. I get a 4 year-old who comes in, gets told “no”, and just loses it. It’s very scary to see and hear a child out of control like this and it is understandable that parents can feel really powerless. After the dust settles, a joke I often tell at these times to put things back in perspective is, “Yes, it’s very scary when a child is out of control like that. But remember, he’s a little kid. If worse comes to worst, you can always sit on him.”

So, why I am I telling this story? Well, I’ve had trouble explaining to people (and myself) how my long-term prognosis can be so positive, when I’m going to need at least one more surgery. My long term prognosis is positive because my cancer is not aggressive and whatever is still in there, is just in my breast. It hasn’t gone to my lymph system or into my blood. But MRI and mammography did not pick up on the 2.5 cm of stage 0 cancer they found in the breast tissue they removed from my body. (I am guessing that my breast tissue will be easier to read when I become menopausal because “busy breast” is supposed to be very common in pre-menopausal women and to “mellow out” with age. But that could take a significant number of years.) Although stage 0 cancer is not invasive can’t kill me, there is no guarantee that it won’t develop into an invasive cancer. And given that they found two small invasive tumors in the area, they know that my breast already knows how to make invasive cancer.

My cancer is tantruming and putting up a fuss. But it is still little enough to contain so they are “sitting on it”, so to speak. I am hoping this surgery takes care of things but if not, I will get a mastectomy and then later reconstruction surgery. The mastectomy is major surgery so it would mean taking 4-6 weeks off from work. This is not my preference, actually my preference is not to have cancer at all, but I think it would be the right choice for me if it comes to that.

Categories Facts, Feelings

Protected: Taking it easy-sort of

July 8, 2012 //

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Categories Facts, Feelings

You’ve gotten the facts, now for the feelings

July 7, 2012 //

Okay, now for the second version of yesterday, the day we finally got the information from the pathology report. And I’m not complaining that people weren’t doing their job with the pathology report, they were trying to do an excellent job and to be careful. Slow and accurate beats fast and wrong any day. Even Aesop knew that. However, the process was fairly stressful. I had three appointments with three different physicians during the week. Each doctor was relying on the results of the pathology report to guide the appointment. The report was not available until the third appointment with the medical oncologist, Dr. Rinn. So John and I kept prepping ourselves for news, only to be told that no news or partial news were available. All of the physicians were very apologetic and did their best to get the information they needed before the appointments. I did know that Dr. Rinn had the report because her office called me in the morning to let me know that it had been received. As a healthcare provider, I know how hard scheduling can be. I know part of the rationale for chancing that the report would be available was to avoid having to reschedule me for weeks out. So to make a long story short, I don’t think my physicians have been careless with me but it was a very stressful process.

Now for the really stressful event. Yesterday, while waiting for my new patient visit with Dr. Rinn, I was approached by a nurse who is working with a research study. She asked to talk to me about participating in the study, which compares a number of different chemotherapy regimens to one another. This was very upsetting to me because I had not yet met with Dr. Rinn about my treatment plan and up to this point, I have been told that my chances of needing chemotherapy are low. As someone who used to work at Harborview on a medical research project, I also knew that this woman probably had access to information from my medical record, possibly even the long awaited pathology report. She also told me that she was talking to me because Dr. Rinn thought it was a good idea! So, we were sitting in the waiting room, confused, thinking that someone’s hand had been tipped and we did not have an opportunity to ask questions or anything. Finally, I told the nurse, who I think is likely a very nice person who is just trying to help people, that I had not yet met with Dr. Rinn, seen my pathology report, and didn’t even know if I was a candidate for chemotherapy. I also told her that I had been a researcher for 10 years, was a psychologist, and that it was very upsetting to be approached prior to my even being able to meet with my doctor. She was extremely apologetic, explained that she didn’t even know if I was eligible for the study, and then walked away. I saw her in the hallway of the clinic with her head hanging low and I felt sympathy for her. I know she didn’t mean it and I could tell she felt really badly for having upset me. I did, however, feel strongly that my feedback was appropriate. Little changes in research protocol can make a big difference and this is one of those times.

Miraculously, my dear friend Nancy called at just this time to ask me how I was doing. I told her, “Your timing is perfect because I’m really upset.” I explained the situation to her and she agreed that it was possible that I am a candidate for chemotherapy, but more likely, that this was some misstep on the part of the research study recruiter. Couching her comments with “Well, I’m not an oncologist, at least the last time I checked”, Nancy explained that women in my situation usually need oncotype testing to determine whether chemotherapy is necessary and that results of that testing take weeks after surgery so it would be unlikely that the testing had been done considering that I only had surgery last week. Then she kindly said, “You want to just keep talking about stuff until it’s time for your appointment?” So we chatted for awhile and then it was time for the appointment.

Dr. Rinn brought up the incident herself saying that the nurse had called her and left a voicemail. She was very apologetic, explaining that I should have never been approached prior to my consultation with her and further, that I do not even qualify for the study. Dr. Rinn also said that the research study nurse is a very nice person but was glad that I had told her that I was upset and suggested that they make sure they approach patients after they have a treatment plan with their physician, not before. She also reassured me that I still have a low chance of needing chemotherapy and with my permission, ordered oncotype testing, just as Nancy had predicted.

Phew!

Categories Feelings

Pathology report-mostly good news

July 6, 2012 //

I met with Dr. Kristine Rinn, a medical oncologist. “Aren’t they all oncologists?” you ask. (At least that was my question.) A medical oncologist deals with the systemic, medication treatments for cancer. Surgery and radiation are local treatments because they only focus on one body part or region rather than the whole body. Medications, since they travel through your blood stream are systemic in that they impact one’s entire body. The most commonly known type of systemic cancer treatment is chemotherapy. However, there are a number of systemic treatments for breast cancer, including hormone blocking medication, which is called endocrine therapy.

So Dr. Rinn went over the pathology report with me because she was the first doctor I saw since it became available earlier today. I will be meeting with my surgeon soon, as well.

The good news follows:

1) The cancer I have is not an aggressive type. It is also very small. Younger women tend to have larger and more aggressive tumors. However, that is not the case for me. I have a small, old lady type tumor. In the breast cancer world, this is a good thing. Dr. Rinn told me that she thought I was going to be “just fine” in terms of long term health.

2) There was no cancer found in my lymph nodes.

3) There was no evidence of lymph vascular invasion. This basically means that they looked for the bus station that leads to the lymph system and there was no cancer waiting for a ride to other parts of my body.

4) All of the margins for the tumor detected on mammogram and biopsy were good.

5) Dr. Rinn seems awesome!

The unclear and/or negative news:

1) There was a second, smaller tumor found right next to the main one. The second tumor is 3mm. This is not so unusual. However, two tumors is worse than just one.

2) They couldn’t tell if those cells that looked like they might be stage 0 cancer, were stage 0 cancer or not. Whatever they are, there are two spots where they are too close to the margin of the tissue that was removed during surgery. There is also concern that this area, which comprised 2.5 cm, over half of the removed tissue, was not detected through the mammogram or MRI imaging.

3) Although my chances of needing chemotherapy are low, more testing of my tumor is needed to assess this and it’s done in one lab in the country. The testing is called oncotype testing. It is done for women with no evidence of breast cancer in the lymph node who also have a hormone responsive tumor. Swedish is sending off a sample of my tumor to be evaluated by the lab. They will look at 21 genes, which are correlated with long-term cancer recurrence. They are able to use the information to assess 1) the chances that my cancer will recur and 2) whether my cancer would likely benefit from chemotherapy treatment. The results will be available in 2-4 weeks and at that time, Dr. Rinn, John, and I will go over her treatment recommendations.

The long and short of it is that I am going to need to have another surgery. I am at peace with this. The approach now is to preserve as much breast tissue as possible and one possible negative for this is that another surgery might be needed. I will have more information about this after I meet with Dr. Beatty.

Categories Facts

Protected: Crunch

July 6, 2012 //

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Categories Feelings, Parenting

Another Battlefield-My To-Do List

July 4, 2012 //

I learned my cancer diagnosis on May 24th. Tomorrow will mark 6 weeks since learning the information that if not turning my life upside down, has shaken things up quite a bit. As you know, I have a private psychology practice. What you may not know is that the busiest time of the year for my practice is the end of the school year. Since I specialize in disorders that greatly impact school, there is a rush at the end of the year to get testing done so that support plans can be started before everybody leaves for the summer.

I have a very busy practice and there is a sizable wait time for an initial appointment. By the time I learned of my breast cancer in late May, I already had testing appointments scheduled into late August as well as having planned two separate week long vacations during that month. Now I’m not denying that I am very good at my job but part of my popularity has to do with the fact that there’s a big shortage of specialists who do what I do. I also accept insurance and I am on some major insurance company networks, which is not true of a number of child/adolescent psychologists who specialize in testing. Dealing with insurance is a pain but I make a good living at what I do, for which I am grateful, and I am able to work with a broader range of families, not just people who can afford to pay my fees out of pocket.

When I was diagnosed, I was very worried that I would not be able to finish all of the assessments I had scheduled between 5/24 and the end of August. I’m not concerned that I will not be able to administer all of the tests. That’s the easy part. The time consuming part is scoring, reviewing background information (for example, I request all past progress reports/report cards going back to kindergarten), figuring out what it all means, and writing up the report. A short report runs about 5 pages and a comprehensive assessment (which is the norm for me) runs about 7-9 pages. To honor all of those commitments I will have needed to have finished 17 reports between 5/24 and 8/17. The kid I scheduled for testing at the end of August, will not need his report done until early September at the earliest.

So yes, I have felt overwhelmed by the amount of writing I need to get done each week and each week, I wonder whether I will be able to finish it all. It is still unclear as to whether I will get all of this done but using my strategy of focusing on what I have already accomplished instead of just on what looms in the future, I made a list of everything that I’ve finished as well as what is still to be done.

So, here are my tallies. Since I was diagnosed with cancer on 5/24, I have written 8 of the 17 reports. By the end of the week, I will have completed an additional two reports for a total of 10 reports. After this week, this is my to-do list for testing between next week and the end of August:

Administer testing to three kids.
7 reports to write
9 parent feedback sessions to go over reports and my recommendations.

This still seems manageable to me. I know things can change and I’ll deal with that when it happens.

Yeah, I know this post is kind of boring. But stress management is not exciting. I have too much excitement in my life, hence the excess of stress, and the use of boredom as an antidote.

Categories Feelings, Not Cancer-the other part of my life

Protected: My mother’s blog needs more action–Plus there’s a pic of Zoey

July 4, 2012 //

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Categories Not Cancer-the other part of my life

Close Encounter of the Human Kind

July 4, 2012 //

Yesterday, I saw a young woman waiting for the elevator at the Swedish Cancer Institute. She was probably in her late 30’s. She wore well-fitting jeans (not tight, just right), a top, and a cute little hat on top of her nearly bald head. I thought, “She’s rockin’ that look.”

I smiled at her, said “hi”, and we both got on the elevator. She saw my Swedish tote bag, which identified my membership in the cancer club. She remarked that she had carried hers around for months but it made her feel like a nerd. I joked that I called it “my big ole’ bag o’ cancer.” It ended up that we were both headed to the surgery clinic. We chatted a bit more as we waited to check in. She seemed smart and friendly. After we checked in, I joined John who was already in the waiting room and she sat in a different section of the room.

After several minutes, she walked over and said, “I hate waiting. Would you like to chat?” We introduced ourselves and talked for a few minutes. Jen had also just gotten surgery but this was her second surgery. She had also just completed a round of chemotherapy and it was likely that she would complete another one. I wish I’d gotten a chance to talk with her more but I was called in for my appointment soon after she joined us.

Jen looks really young and she’s had a lot of treatment in the last 7 months (she was diagnosed in December). Despite these sobering facts, I was reassured by her. Two of my biggest concerns about cancer treatment are having energy and if I should ever need chemotherapy, changing the way I interact with the world because I would be an obviously ill person. But Jen had enough energy yesterday morning to take care in putting together an outfit, which she rocked. (I know that she had just finished chemotherapy so she probably felt worse earlier but still.) She also engaged with me, a stranger in an upbeat way. I’m sure she gets lots of looks and has the frequent dichotomy of experiences where people either avert their gaze and ignore you or approach you and talk about your illness even though they are a stranger. But still, her presence was reassuring.

If I don’t see you again, Jen keep rocking the hat and I wish you a speedy recovery from this point on.

Tags Breast Cancer, Coping with cancer

Categories Feelings

The Battlefield is Smaller

July 3, 2012 //

The pathology report is still not fully complete. However, some very important and positive information was available.

-There is no evidence of cancer in the lymph nodes closest to the tumor. So this means that the cancer I had or have is contained in my breast. This also dropped the likelihood of my having chemotherapy down some more.

-The margin (width) of healthy tissue surrounding the tumor was good.

The unknown:

There are 2-3 additional areas of atypical lobular dysplasia (ALD). My understanding is that ALD are markers for cancer. There is a chance that these areas are cancerous, the non-invasive kind (stage 0), called Ductal Carcinoma In Situ (DCIS).

The long and short of this is that I may have to have another surgery. If the areas are DCIS (a kind of stage 0 cancer) and if one or more of these areas is too close to the edge of the tissue that they removed in surgery, I will need another surgery to take out more tissue. This does not likely mean the need for a mastectomy, just another lumpectomy.

Apparently, my tissue is hard to interpret (I have dense tissue) so the pathologist is consulting with two more senior pathologists to get their opinion before the final written report is available.

Dr. Beatty said it could be another week until it is completed but he will call as soon as he knows anything.

In sum, the cancer battlefield has gotten smaller, but they are still trying to figure out the number of ground troops that The People’s Republic of Cancer has hiding in there.

In the meantime, I am celebrating the lymph node news and distracting myself with other things.

Categories Facts

Spam and waiting

July 3, 2012 //

I’m still waiting on pathology results. In the meantime, although I’d sworn off spam this one is pretty funny:

hi mate…

Thanks for using the time to talk about this, I experience fervently about this And that I carry satisfaction in studying about this topic. Please, as you attain facts, please update this website with far more facts….

They must use an online language translator for this. It reminds me of the story John tells about early attempts at artificial intelligence during the Cold War, when computer scientists tried to develop an English/Russian translator. They inputted the bible quote, “The spirit is willing but the flesh is weak”, translated it into Russian and then translated it back into English, yielding, “The vodka was good but the meat was rotten.” Using the same process, “Out of sight, out of mind” became “blind idiot.”

Categories Feelings