BC Becky

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

Category: active treatment

  • “Wow! I hope you get it out of you soon!”

    A friend said to me “Wow! I hope you get it out of you soon!”

    Honestly, before I had breast cancer, I always thought that if I had cancer, that would be my reaction – just get it out of me. I find it very interesting that it is very much NOT my reaction. The decision to ‘just get it out’ is so much more complicated then I ever thought it was. There are options, and with each option comes different treatments and side effects – and I’m still waiting. If the HER2 FISH test comes in positive for HER2/neu then the decision become easier. There is a drug that has been proven to be quite effective for HER2/neu cancers that can only be given pre-surgery – so neoadjuvant (http://www.perjeta.com/patient/neoadjuvant), which just means ‘before in addition’.

    One of the hopes of any neoadjuvant treatment is that it also causes the tumor to shrink. If the tumor shrinks then the surgery can be less invasive.  The other advantage to chemo first is that I would know my genetic test results before going into surgery. If it turns out that I do have the breast cancer gene (or one of them), then the decision for a double mastectomy makes more sense than doing a lumpectomy and having to do additional screening/tests every 6 months (reoccurrence rates goes to like 80% if you have gene).

    So the feeling isn’t so much ‘get it out soon’, it is more about how am I going to get it out, and  just who scary the surgery itself is. How will I feel when I wake up.

    Man I’m looking forward to experiencing some good drugs during this process. There must be a positive side to things, and good pain meds might be it! Today, I’m hoping to get a total non-medication high – sailing upwind at high speeds on a giant sailboat. When you see it sailing in the harbour it sticks out because it is on such a different scale than the other sloops in the harbour. If we are dry, we shall take lots of photos!

     

     

  • 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.
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    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!

  • My quantified and qualified self

    I started writing this post a few days ago, but never found the time to finish it. Today is a day off of doctors appointments, although I am expecting a call from the oncologist (onc) at PAMF regarding the results the tumor board there.

    Let me start by saying I’m a mixed-methods researcher. That is, that when I do research, I look at both qualitative and quantitative data, as both help to provided a complete picture. With this blog, I have mostly been dealing with what I call my qualified self – that is my feeling and my perceptions of the world. When I think about my quantified self, I’m thinking about the numbers – what’s my current weight, what are the letters that represent my diagnosis, what are my various counts, etc.

    The increase of mobile and now wearable technology has spawned a whole movement known as the quantified self. Scott actually attended a meet-up with people regarding the quantified self. For a few years now, we have been quantifying ourselves by having a scale that connects via wifi to the Internet and reports our weight and body fat measures. This information is nicely graphed for us. One thing this has provided is a clear picture of when I started to lose weight – June 2nd. Without the automatically measuring scale, I would not have been able to so clearly see the progression.

    June 1st was the first time I notice that something wasn’t the same with my left breast. I panicked a little at first, but then told myself it was nothing – of no concern. I convinced myself for a full week that it was nothing. Then on June 9th I went to see my family doctors … and that is when my life began to change.

    Another area where I measure my quantified self is when I bike. I mostly like to track time rather than distance, because really, it is the length of time on the bike that matters most. For this I use an app on my phone called Runkeeper. One advantage to tracking my quantified self is that it provides me with motivation. When I started to write this post, I wanted to report on my bike ride, but I had not done one that day. That gave me the motivation I needed to get out, when I wasn’t really feeling like it – I had the strength, just wasn’t in the mood. Of course, once I got out on the bike I was very glad to be out riding.

    Today, I don’t have any appointments (at least not right now). I’m going to try another attempt at Mount Hamilton from the Fire Station. Last time I tried it I rode 15 km (exactly half was up hill). That was June 10 – the day after the appointment with my primary care doctor, and two days before diagnosis. Today, I’m going to try the same ride, with my folding bike (I find it a little easier to climb on my foldy – plus my road bike is in the shop for a service). It takes about an hour to drive up to the fire station. One really nice thing about this ride is that there is very little traffic during the week. I usually get passed by two or three cars in the hour and half that I’m riding … although I suspect today might be a two hour ride – I’m going to try to make it …

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    When I go to the doctors, I see mostly my quantified self. I am the numbers that are represented by the pathology. However, the doctors actually don’t seem to see me that way. In many ways, they actually seem to be more about the qualified self – they are asking me to make decisions based upon how I feel and what is right for me. They aren’t focusing on the quantified self – at least not yet – now, if I end up in a clinical trial, I expect that will become much more quantified!

    This whole clinical trial thing is interesting. There is so much research going on around breast cancer treatments, that there is guaranteed to be one aspect or another of my treatment that is associated with some trial or another (my surgeon wants to add a tattoo to my nodes if they don’t have cancer). In some ways, I don’t want to be in too much of a trial, as that limits things. For example, if I’m on a chemo regime as a part of a clinical trial, then all my tests and such need to be done at Stanford. I cannot get a portion of my care at the closer PAMF. If I’m not in a trial, then I could, for example, go to PAFM for radiology – which is nice, because the one thing I did like them most at PAFM is their radiology department. Potentially, I could go to PAFM for chemo treatments – even though the onc is at Stanford. It is good to know that the option is there.

    And now I need to make breakfast … fuel for the bike ride later today.

  • Long day at Stanford

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    Our day began by driving up to Stanford early so that we could avoid too much rush hour stress. We decided to check out breakfast at the cancer center. We shan’t be bothering with that plan again, as all the options involved eggs which I cannot eat that often. Oh Well. The coffee was good.

    Our first appointment was with the surgeon. They had also scheduled an MRI, but we were not sure if we were going to stick around for it. We would only do the MRI at Stanford if we thought that I’d be seeking treatment at Stanford as they prefer the MRI be done at same location.

    We immediately noticed a difference. The automatic assumption was not mastectomy. They began the conversation with the assumption that a lumpectomy was an option. Actually, the surgeon I saw specializes in nipple sparing techniques. An important comment had something to do with 10-15 years and same mortality rate for both mastectomy and lumpectomy with radiation. I’m not 100% certain how I heard, so we are asking for clarification. The idea was though, that lumpectomy, plus radiation and minimal reconstruction is a real option. When we go back up, she wants me to also consult with a plastic surgeon. So, the result could be two smaller boobs – rather than no boobs. One interesting side-effect of radiation is that the breasts don’t grow (or grow slower) – so if you gain weight you don’t gain breast. This is an issue if you have only one breast cancer, as you can then become lopsided post-surgery. With both, this wouldn’t really be an issue. Upon reflection, Scott commented that you could really tell the doctor’s passion – she was passionate about creating the best outcome for women long term – so an outcome that would make them happy with the results well after the cancer.

    Throughout this process, everyone has been very clear to highlight that cancer treatment is an individual choice. They provide you with the options, and in the end you need to be the one that decides which option to take. Some of the best advice I have received is “you do not need to like all your doctors” and “choose who you want to trust, and then trust them.”

    I was sent for an axillary ultrasound (ultrasound of the armpits) as that had not been done at PAMF. So far, no one has found any lymph node clinically (that is by feel), and the ultra sound is done to see more detail. The ultra sound saw nothing on the right and wasn’t determinant on the left, but there is swelling from the biopsy so nothing was clear.

    We met with the oncologist, who I really like. Actually, almost immediately I liked him. I’m not sure why, but I felt that I could trust him. He examined me then went off for a bit, and when he came back he brought in the surgeon and the fellow (surgery fellow) – so I had all three doctors in the room talking to me at once (that was kind of nice). We all talked briefly because I had the MRI appointment, and 4pm was fast approaching.

    In general, we don’t yet have enough information for a treatment plan (we knew that). They wanted to see the MRI results and more importantly the HER2 results. As far as everything we have seen so far, all indications are that the lymph nodes are clear (good thing). If the HER2 is positive (I would then be triple positive), then the HER2 regime would be indicated before surgery (I got a sense that this is the expected outcome if indeed I the tumor began to grown when I think it did). One benefit to doing something before surgery is the chance that the tumor might shrink. Shrinking the left tumor would make surgery easier – especially if the surgery is a lumpectomy.

    If I were to be HER2 Indeterminate (not positive), there was a potential clinical trial (because even with HER2 Indeterminate, I still had some HER2; however, I didn’t qualify because of the second breast cancer). The difference would be have been the post-surgery treatment.

    The day ended with an MRI. It is perhaps the oddest thing I have ever experienced. Unlike all the pictures, you are in the MRI machine on your stomach with holes for your breasts to hang down. The test took 30 minutes, and it made the oddest sounds. At one point it sounded like a fire truck was whizzing by. Other times it was clicking, and then shaking. There were whirs, honks, and other sounds that somewhat reminded me of the sounds on the container ships. Truly, it was perhaps one of the oddest experiences I’ve ever had. When the test was over, and I got up, I was struck by how sore I was. I had not realized that I spend half an hour laying down with a large portion of my body weight on the center of my chest (as my breasts where hanging) and my arms were above my head. I’m not really looking forward to future MRIs!

    When we got home, we both collapsed. It was a rather exhausting day.

    Although I didn’t like the initial feel at Stanford (there were a lot of sick people walking or being wheeled around), I did really like the doctors. More importantly, I felt a level of trust with the doctors that I don’t think I felt at PAMF. At PAMF the doctors are all really nice, but I wonder if they are too conservative. I think I would be happy there if I had simple breast cancer, but I don’t. What I like about PAMF is that I didn’t have to see a lot of other sick people, so I didn’t feel sick. At Stanford, there was obviously a lot more people being treated for a lot more serious disease. It makes sense, but it did make me feel for the first time that I too was sick – which given how exhausted I was when I got home … however, after a nap, and some food, I’m feeling a lot better. I’m hoping that I wake up tomorrow with more energy as I’d like to get in a decent bike ride … too much of the last two days has been spent indoors.

  • 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 …

     

  • The challenge of time and holding a thought

    Right now I’m finding that my biggest challenge is time. Things are moving so very quickly, and I’m trying to manage many different appointments, phone calls, blog posts, an other notifications and minute (not sure I’ve spelled that right, just say it with a French accent).

    Most of yesterday was spent dealing with my eyes. As some of you know, I had cataract surgery in January in my left eye and April in my right eye. I also had a YAG capsolectomy (sounds complicated but it isn’t) in my left eye. I had scheduled it for my right eye, but that is now postponed. It isn’t a big deal but may eventually affect my ability to drive at night. Currently things are OK. The eyes didn’t come in quite right after cataract surgery, so I was looking into PRK to make minor adjustments. That now is on hold – so I had to go to an optometrist yesterday to get some prescriptions for glasses and contact so that I can function over the next year. After that it was a trip to Costco to find new glasses, order them, and order contacts.

    With that taken care of, my number one priority pre-surgery is biking. That is, back when I thought I might have cancer (after my family doc appointment) the one thing I decided was that I would train so that I was in the best physical shape possible before surgery/chemo. I want to make sure I’m going into this as strong as possible. For me this means allocated 2-3 hour a day (or more) for biking.

    My second priority is to have some fun. Years ago, I read the book “From chocolate to morphine: Everything you need to know about mind-altering drugs” (I highly recommend it). It talked about finding things that cause your natural high – like when you were a kid and you would spin around really fast to cause a bit of a high. Anyways, one of the things that causes that natural high for me is sailing. So, we are looking at ways were we could go sailing more often. It can be very physically demanding, which can be a challenge. This Saturday, we are headed up to SF to go sailing on the 2003 America’s Cup boat. If we enjoy it, and if there are less strenuous ways to participate, we may consider buying a season crew membership, which would allow us to go sailing anytime they have a public sail – which is most weekends. So, we could spend every Saturday or Sunday going out for a sail (for as long as my body allows). Here is hoping that we enjoy it!

    An now, my timing is running out yet again … need to hop in the shower, change, and run to the Apple Store before picking up Scott and heading to the oncologist appointment.

  • And so it begins

    The slow start to yesterday meant that I didn’t get my second blog post written. I shall try and get caught up today (before I completely forget what I was going to write about), but no guarantees.

    So yesterday we received some mixed news about the pathology. Specifically, the cancer in both breasts is IDC (invasive ductal carcinoma). Both are also ER-positive and PR-positive. We don’t know yet about HER2 as that test takes longer. This is a good thing, as it means there are more drug options for treatment.

    Left Breast (this is the scary one):
    grade 3
    Ki-67 count is 38% (this says it is still growing quickly)

    Right Breast (the nurse used the term ‘well behaved’)
    grade 2
    Ki-67 8%

    If you want to better understand pathology, there is a great resource: http://www.breastcancer.org/symptoms/diagnosis/path_checklist

    Today we find out what all this means. We are meeting with both the surgeon and medical oncologist from Palo Alto Medical Foundation (PAMF). Tomorrow we get a second opinion at the Stanford Cancer Center.

    I’m torn between the two environments. In part it will depend on what the treatment options are an who is more suited to doing them. PAMF has provided excellent service so far. It is easy for me to get in to see people and I have access to my care providers via email (mostly – apparently the system will not let them email malignancy pathology so I’ll get a printed copy of my reports at some point today). The nurse navigator phoned me yesterday and was awesome. She was able to follow up with the surgeon, collect all the info I needed, and call me back. That saved me an immense amount of time trying to track down the surgeon. I can see that being a very useful thing. In some ways, the decision will depend on the treatment options – and whether I will have the options I need at PAMF. I’m not actually interested in some of the stuff they do at Stanford – like nipple sparing surgeries and things that are done to help with cosmetic reconstruction. Honestly, I cannot see putting myself through the unnecessary surgeries to save skin that might be diseased. I’ll try to talk more about my outlook on that latter.

    Need to get moving this morning. Feeling much better than yesterday. The ER and HR positive news was good news, but also I got some great anti-anxiety meds from my family doc that meant I got a good night’s sleep.

  • A tough day

    I didn’t sleep well last night, and I know that sleep directly affects how I feel the next day. Reality is starting to settle in, but also fear. With every pain in my body I’m wondering if it is spread. Does the blister on my hand mean anything? How about that pain in my breast? The pain (it isn’t really a pain, more an awareness of feeling) in the breast is especially concerning. I find myself wondering if it is reaching the chest wall? But the logical part of my brain is saying, it could just be the biopsy healing – after all they did stick rather large needles in to extract core samples.

    One lesson I have is to not tell anyone new at the end of the night. Telling people is hard – there are reactions and conversations that accompany the news. Doing so just before bed is apt to disrupt my sleep – but the late day news of the second biopsy is just as much to blame I’m sure. Mostly I’m pointing people to my blog, just so I don’t have to keep saying it. There is an emotional toll that occurs on both sides. Some people want to reach out and talk, but I’m not there yet. I cannot talk about it. I think that when I have a treatment plan, and enough information to actually have something to talk about, then I might be able to talk about it.

    One of the thoughts on my mind is my outlook, and how much planning for the future do I do? I cannot schedule anything without a treatment plan, and I have no clue how sick I will be. I find myself thinking, “I need to do this before I get sick”, as my mind is telling me that the treatment is what will make me sick rather than the disease that I have now. When I talk about the future, I’m thinking about how much do I set things up so that I can pick up where I left it, or that it keeps going while I’m away, versus how much do I just let things go.

    I’ve submitted the paperwork to put my studies on hold starting September for a year. My project wasn’t progressing at all as planned, and a year away will make it unrecoverable. I’m not actually sad about that. I’m looking at what things I can do in the next few months to make the most of the data I already have – favouring the creation of journal articles for publication over any thoughts of constructing a dissertation. I’m more excited about the opportunity to start again with a new project (perhaps an autoethnography based upon this blog – looking at the role blogs and social media play in the mental health of cancer patients and their families). I was filling in something yesterday that had my credentials. I’m a PhD Candidate, which is written as PhD(c). I guess that is the credential that will remain after my name for at least the next couple of years. I remind myself that getting this far has been a huge accomplishment, and is worth celebrating.

     

  • The role of fate in my life

    Although I don’t believe in a god per se, I do believe in some form of fate. Throughout our bicycle journey (http://goingeast.ca/blog) we often felt that something was looking out for us. When I started my PhD, I reflected on fate here.

    I think that fate played a role in helping me be prepared for the challenges that lie ahead. Fate directed me towards the PhD program, where I ended up working with the Department of Family Medicine (DFM). Without this, I never would have found myself working in medical education. The last three years working with DFM has meant that I have developed a much deeper understanding for how medical education works, how some aspects of medical research work (e.g. I know what implementation research is), and how medicine is practiced in an academic setting (even the difference between a community and academic setting). These all have proven to be very valuable, as I learn to navigate the American health care system. I also now have friends who are physicians, and they have been a great support.

    The PhD program also helped me discover myself as a blogger. It helped me create a wide reaching social network (really several networks) – which I am very grateful for. When I first heard that I had cancer, I had people that I could reach out to – friends who put me in touch with other friends – all helping to form a network of support. It is at these times of crisis that we discover the true power of being part of networked communities.

    Thank-you everyone for your supporting words. When we were on our bike trip, we learned to ask for what we needed – it was not an easy thing, as it isn’t normal in our culture. I wrote about hospitality and permitting others to help us on our journey. To that end, a small help that you could provide on my journey would be to send a postcard, at some point over the next year (not all at once please) – something random at some random time. A postcard with a smily face, a poem, or a joke. Getting a small thing in the mail will put a smile on my face. I’m not sure I want to post our address here – so email/facetime/twitter me and I’ll provide it. Thanks.

  • A typo and an update

    Sorry, I clearly need to do a better job proof reading … I don’t have enough information yet to be talking about stages. Stage is a measure of the progression of the disease, and more needs to be known. I’m guessing stage 2 based on the size of the tumor on the left breast, but that hasn’t been confirmed yet.

    I did have confirmation that I have cancer in both breasts – so both breasts are grade 3 invasive ductal carcinoma (IDC) – which I shall now refer to as IDC cause the other is too hard to type.

    I am awaiting (numb to feelings at the moment) the results on the receptors. I’m hoping for a positive on something at this point, as the receptors tell the oncologists which types of chemotherapy work.

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