BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: statistics

  • I’m an educator (and my public service announcement)

    A couple weeks ago I was reflecting on who I am. I reported to the blog, that I am an academic, but further reflection has me questioning that. Mostly in the form of what type of academic. Since diagnosis, I haven’t been able to read a single academic article. I’ve browsed through a few, but my concentration and interest have not been there. I’m may not be approaching this ‘cancer’ problem as an academic, but I do want to approach it as an educator.

    I don’t call myself a teacher. To me, teacher means the person who leads K-12 classrooms – a person who helps kids learn. I don’t work with kids. I don’t even work with the average adult. When I teach, it is usually to professionals – I teach teachers and doctors how to use technology. I educate, I don’t teach.

    I also educate through my writing. As an instructional designer, I have done a lot of educational writing. I create training programs and packages that are designed to help professionals learn new skills.

    But what does that have to do with this? I find myself wondering how my cancer can be turned into an educational experience? Who would I be educating? Who can learn from my experiences? How can I make most out of this experience from an educational point of view.

    In the first part, I want people to learn what a ‘lump’ in the breast feels like. I kind of wish more residents were involved in my care at Stanford – more people taking an interest and learning from my experience. I had no idea what a cancerous lump felt like, even when it happened to me. I recall in a health education class the nurse bringing in a mannequin breast that had a lump in it, to give us a sense of what a lump felt like. I also remember never being able to feel that lump. I remember feeling my young breasts as a teenager and wondering if everything I felt was a lump – as I had pretty lumpy breasts (not a lot of fatty breast tissue back then – perhaps they taught the class a little too early for me!).

    This links me directly to a charity that Sarah Outen supports on her round-the-world human powered journey. I’ve been following Sarah’s journey since it began a couple of years ago. One of the charities she is fundraising for is called “Coppafeel“, and it is about awareness for breast cancer in young women. The idea is to get women used to the habit of checking their breast every time they get in the shower. They will even sent you reminders if you sign up. I actually don’t recall where or when I picked that habit up, but I know that I did. I was never good at the laying down in bed and checking once a month, but I did form the habit of inspecting my breasts every time I got in the shower. That is how I knew that something had changed – that after my bike ride June 1st there was a mass there that had not been there before. I didn’t realize at the time that it was cancer – I thought that after the somewhat rough bike ride (a lot was on dirt path) that perhaps I had strained something – although it wasn’t sore, it was just solid. One thing I really want to point out here, is that it isn’t necessarily about feeling a ‘lump’, rather it is about noticing a change. In young women (under 45) most breast cancers are found through self-examination – you feel something has changed.

    What a lot of people don’t realize is that although you are at increased risk for breast cancer if an immediate family member has had it, “about 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.”(http://www.breastcancer.org/symptoms/understand_bc/statistics). So, although there is a lot of press about the hereditary breast cancers, for the majority of women, it is a completely unexpected thing that happens. In some ways, the press about hereditary cancers hinders things like screening, as women think that because no one in their family has had it, then it couldn’t happen to them. I certainly thought that. Breast cancer was never something that I was even remotely concerned about (although I still inspected my boobs every time I got in the shower, cause, why not?).

    So, all you women out there, get in the habit (especially if you are too young for routine mammograms) … every time you jump in the shower, coppafeel!

  • Knowing what to expect

    “In my experience, fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. When you feel helpless, you’re far more afraid than you would be if you knew the facts. If you’re not sure what to be alarmed about, everything is alarming.” (Chris Hatfield in “An Astronaut’s Guide to Life on Earth”).

    As the details of tests come back, you are presented with choices. I’ve noticed that all choices seem to come in pairs. You make one choice and then you are presented with the next choice. The quantified data tells you what choices you have, that is, it narrows things down, but the qualified self is who needs to make the decision. So, at times, it is the gut that decides, based upon a bunch of other information.

    Today we got a couple of interesting lab results back. First, the HER2 FISH test came back negative. This is a good thing, as the HER2 treatments aren’t that great (not that any of the treatments are that great). What it means is that the type of cancer I have is the one they understand the most.

    The MRI also showed something interesting. Rather than having a large 4cm+ tumor in my left breast, I actually have two smaller tumors (2cm and 3cm). I’m not completely certain how to take this information, as I now have three tumors. However, the treatment for one is the same as the treatment for the other – so from a treatment perspective nothing changes – and I don’t have a ‘big’ tumor. The MRI also showed no indication of node involvement – which means I caught it early.

    Decisions come in pairs. The first choice is chemo first or surgery first. The next choice depends on the first, but either way, when it comes to surgery I will need to decide on whether I want a mastectomy or a lumpectomy plus radiation. Whatever I do one side, I’ll do on the other – symmetry matters to me.

    After confirming that chemo was advised regardless of surgery choice (increased prognosis by 10% in cases similar to mine), and the chemo before or after surgery didn’t make a difference in the prognosis, but could make surgery easier, the first decision I made was to go with chemo first. My gut had been telling me this for quite some time. I just feel like this thing came out of no where and is spreading, and the only way to catch it systemically is with chemo.

    Of course, that wasn’t the only decision – because every decision leads to another decision. Now I need to choose between two chemo regimes. The quantitative numbers say they have the same outcomes (they did some clinical trials on both regimes and neither was preferred over the other).

    The two options look something like this:

    • option 1: doxorubicin and cyclophosphamide followed by paclitaxel (1 treatment every 2 weeks for 4 cycles, followed by one treatment per week for 12 cycles) – AC -> T
    • option 2:  docetaxel and cyclophsophamide (1 treatment every 3 weeks for 6 cycles) – TC

    They are given at different intervals, but I’ve decided that the logistics of intervals is not an important variable for me. Some people chose one over the other based upon convenience of treatment (the latter option requires less visits and less infusions). So now I must choose based upon side effects, and which I think will be easier / better for me.

    After the doctors appointments, we went for a walk around the arboretum. We found the perfect tree for my picture series. It is an old eucalyptus (huge tree) which hasn’t yet shed its bark for this season – so it is showing older growth now that as the weeks pass shall shed to show the underlying new growth. We also happened across the coolest giant cactus garden. I’ve never seen cacti so large! And finally, we sat in the shade on the back of Stanford’s mausoleum for enjoy a picnic lunch.

    Photo Jun 23, 12 39 23 PM Photo Jun 23, 12 36 07 PM Photo Jun 23, 12 36 49 PM

     

  • Caution – this one talks a bit about death …

    First off, I must start this with a couple of pictures from my beautiful ride up Mount Hamilton this afternoon. It took me 2 hours to climb the 7 miles (not quite 11km) of all up hill.
    Photo & Video Sharing by SmugMug

    Photo & Video Sharing by SmugMug

    Throughout the climb I found myself stopping in shaded corners to both catch my breath and cry.  When I think about what is to come, I put on a brave face, but I still find myself crying at certain thoughts.

    When I was first diagnosed, I was struck by how some things get clear. When we were creating our wills before we went on our Going East bike tour (http://goingeast.ca), I didn’t think I like the idea of my body being used for research. Now, I definitely want my body to be used for research or medical education. I think my time working with doctors and doing research has changed my opinion on this. I also have clarity as to where I’d like my ashes spread – over the molten lava on Hawaii’s big island. These are things that I couldn’t figure out before, but now just seem to make sense. They weren’t big decisions.

    I also decided that I don’t really want to know my prognosis. Prognosis is a statistical measurement of your likelihood to survive. I don’t really care about that statistic, as the only measure that matters to me is me, and no statistic can tell me that.

    Where statistics are handy is in deciding treatment options. When we know that two options have the same outcome (statistically) then it is truly a choice as to which feels right.

    I got recommendation from the PAMF tumor board. They are recommending chemo first regardless of my HER2 status. Chemo would start within two weeks. They need to know HER2 status to figure out the chemo mix. It also takes about a week to get approvals from the insurance company. I think everyone thinks the HER2 will come back positive. Prior to any chemo I would need a sentinel node biopsy on both sides and to have a mediport installed (not sure installed it the right word … I called it a portal the other day … the idea is that they surgically insert a device that allows direct access to a vein for chemo and other medications that are given by IV – with a port I won’t need to get stuck every time someone needs to give me medication).

    We meet with the oncologist and surgeon at Stanford for their recommendations on Monday. By then we should have the HER2 status. If it is positive, then I think everyone will agree that it is sentinel node biopsy followed by chemo.

    HER2 is a bit of a mixed blessing. It is associated with increase morbidity, but the treatments for it have changed a lot. They have completely new regimes which are providing to be very effective (form what I understand) – so the morbidity statistic may be based on old treatments, and the new treatments haven’t caught up yet … not sure, will need to do some more research. Whatever the outcome, we shall adapt and move forward as it is the only direction to go!

  • Double-mastectomy and chemo

    If I’m repeating myself, I apologize. One thing that I’ve noticed over the last two or three days is that my short-term memory sucks. I cannot seem to hold thoughts for that long, and I am very often walking into a room having completely forgotten why I was there. Worse, is that I sit in front of the computer intent on doing something, then have no clue what that was, and am easily drawn in many different directions.

    Today we had a meeting with the surgeon and then oncologist at PAMF. I also had a phone call from the social worker, but I didn’t get a chance to talk to her because I was driving at the time.

    There isn’t exactly a plan for treatment yet, just some general recommendations based upon the known pathology. There is a key test (the HER2) that is expected early next week. The preliminary HER2 was inconclusive, and we need to know if it is positive or negative, so they send samples off to a different lab for further testing. To simplify the discussion with the oncologist, we only went over options that made sense for HER2 negative (which is 80% likely).

    The surgeons recommendation is a double-mastectomy. I had concluded this as well when the right came back positive, as I have two separate cancers in both breasts. What is interesting here is that prior to having cancer, I always thought that if this happened to me, I’d want it out immediately. Now that it has happened, I’m not as certain. Yes, I want it out, but the decision over chemo or surgery first is an interesting one. I have decided that I will not do reconstruction. This makes the surgery much simpler. Reconstruction brings with it a lot of risks, and frankly, I’d be happy to never have to wear a bra again! My nipples have never been a source of pride, and with reconstruction, I’d likely look all or most feeling, so if they are not a source of sexual pleasure, then there isn’t a lot of point to keeping them. Especially when nipple sparing surgery is both more complex and can potential increase the chance of re-occurance. So, it is logical. I like logical. And in some ways it is a relief to have the decision made.

    So far, both cancers (left and right) have the same characteristics (HR-positive and PR-positive). Given the growth rate of the left, chemotherapy is recommended. The chemo would be the ACT type (assuming HER2 negative). Don’t know too much about that yet, since we just learned it today, I haven’t looked it up yet. The chemo could happen before or after surgery, so this is the big question right now.

    Now if I am HER2 positive, that means that chemo will happen first, as there are some HER2 blockers that can only be given before chemo. There are complexities with HER2 – including an increase mortality rate – so if you are inclined to pray, pray for HER2 negative on both sides.

    One thing that I’ve learned is that statistics only mean something before you get a diagnosis. They provide hope (e.g. 80% of breast cancers are HER2 negative), but they mean nothing once you have received the diagnosis. It is no longer relevant what the statistics are about HR-positive and PR-positive. Both cancers are positive, so for me it is 100%. Statistics only matter for the unknown future, not the known present.

    Having two cancers is not so common, but it certainly made the double-mastectomy question easier. If I only had one cancer, keeping the second breast would have been expected (unless I’m BRCA positive – but that information won’t be available for a couple of weeks – we are hoping for negative here too). I would have then had a harder decision regarding reconstruction. I would have always wondered if keeping the right breast would mean an increased risk of occurrence, and it would mean mammograms every 6-months on the right breast, and constant worry. Plus it would have been harder to figure out clothing and all those complexities. Yes women do it, but I would have found it difficult – a constant reminder. So, the double-mastectomy was perhaps one of the easier decisions.

    Tomorrow we go for a second opinion at Stanford. It is also a chance to see the Stanford Cancer Center and decide if it is a better option for treatment. The folks at PAMF saw no reason that I would get any different treatment at Stanford given what we know now. The only thing that might matter is if there is a clinical trial that I qualify for at Stanford that isn’t available at PAMF (the PAMF oncologist didn’t know of any). Stanford in some ways, Stanford has the coolness factor – I could say “I went to Stanford” and I’d wear the sweatshirt with pride. But it is also further away from where we live. At least 20 minutes further, and parking costs $12 (parking is free at PAMF and most of the locations are within 5-10 drive from Scott’s office and 20 minute drive from home). This all adds up. And so far the care at PAMF has been superb. So, although I might have been leaning towards Stanford late last week, I’m now leaning the other direction. But, tomorrow will tell. I may get to Stanford and feel that everything is right there … I am happy to know that I have choices, as choice means that I have some sense of control (I’m a control freak) … and with so much of this, I don’t have any control. So, I’ll take what I can get!

    And now, it is definitely time for a good nights sleep …

     

  • It all started …

    … with denial. I felt something. Could it be what I was feeling was just a muscle strain. Surely if I waited a couple of days it would go away.

    Breast cancer was never something I thought that I would ever have to deal with. I know of no relatives with breast cancer – well, that is not completely true – my cousin was diagnosed with breast cancer at about my age, and she passed away about a year and a half later. But, she had breast cancer on the side of the family that I was not related to by blood, there were additional circumstances that led to her diagnosis – it did not apply to me – I was still safe.

    One reality is that the major of women who get breast cancer do not have relatives with cancer. I am now part of that statistic – or at least, my part in that statistic will be positively confirmed by Wednesday. I wonder, how it possible that majority of women who get breast cancer do not have relatives with cancer? If one in eight women get breast cancer, then I cannot see how those numbers add up. I am definitely going to have to do some more research into this.

    So, my approach to this new challenge in life is to look at it as an academic. Why not? It gives me a perspective and a way to focus. I shall look at this blog as a journal into lived experience. Combining the medical jargon with the lived-experience of someone with breast cancer. I shall be negotiating how this new identity of mine changes who I am as a open academic.

    So, today my goal in life changes. Today, I can now say that I want to be identified as a breast cancer survivor, as the alternative doesn’t look so grand!

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