BC Becky

Never Thought I’d Want to be a Breast Cancer Survivor

Author: Becky

  • Permission …

    On Friday, I gave myself permission to stop working while I’m on Taxol. I have been trying to sneak in small amounts of contract work, but I just haven’t been able to get anything done. I’ve had the same task on my to do list week after week. It isn’t a big task, nor a lot of work, but it requires some concentration – and I just don’t have that right now. So, on Friday, I gave myself permission to let it go.

    I have to say, it is a lot easier to put it on hold with the thought that I’ll have one or two more treatments – a lot easier than thinking 6 or 7 more treatments.

    I got word from my oncologist – the current plan is that I do chemo on Monday (dependent on my blood counts). I have an MRI booked for Thursday evening. I see my oncologist again on Monday morning (Oct 13 – Canadian Thanksgiving). I also see both my surgeons that day. Depending on what the MRI says, we will either continue with chemo or move on to surgery. I’m leaning towards surgery right night, largely because the chemo is taking away all my energy. I’m tired of it all – ready to move on to the next step.

    So, I’ve given myself permission to not work while on Taxol. I need to let that pressure go. I’ve also decided that I shall not be driving while on Taxol. Two weeks ago I was good on Tuesday and part of Wednesday. This week, I wasn’t good Tuesday afternoon. I do wonder if the issue is related to my low blood counts? In some ways, I hope that is the problem, as it would mean that when my blood counts rebound I’ll get that cognitive processing back.

    Today, I’m tired – I’m actually looking forward to the post-chemo steroid boost – that is, the extra energy I get on Monday afternoon, Tuesday, and Wednesday because of the steroids given during chemo.

     

  • Fear and feeling better

    Yesterday, I was scared. I didn’t quite realize just how scared I was – and I couldn’t quite label it. I was scared enough that I cried. Then I went out for a bike ride. Biking always makes seems to help clear my head and allows me to figure out what I’m actually thinking.

    I realized on the bike ride that I had a fear of taxol chemo – almost a paralyzing fear – so bad that I was making plans to skip treatment. But I wasn’t sure if the fear was a rational fear or not. My fear is that the side effects that I’m experiencing will become permanent. With each additional treatment, I’m afraid that the damage will be irreversible. This is scaring me more than the fear of the cancer itself, and scaring me more than surgery (which isn’t scaring me anymore).

    Today I’m feeling a little calmer. I’ve been able to label my fear. I sent an email to my oncologist, telling him that I am scared. This will likely be a surprise, as I have always (almost always anyways) been strong during my appointments. But I just need some form of re-assurance. I need to hear that I’m over-reacting, that one more treatment won’t be the ‘one’ that causes irreversible damage.

    Somehow, today I’m not feeling nearly as panicked and scared as I was yesterday. I got a good night’s sleep. Actually, I’ve been sleeping better since the weekend. It has been cooler outside and we bought a new fan to cool the bedroom at night – which has made a huge difference. Unfortunately, the cooler weather isn’t expected to last – with forecast temps as high as 30 degrees C on Friday! So, back into summer temperatures. So, as some of the side effects get worse, others are fading as my body gets accustomed to the chemo. Today, I feel that I can manage one more treatment of taxol …

    I also woke up this morning to fewer eye brows and definite thinning of the eye lashes. I probably have less than 10 hairs on each brow now. However, my head has a nice layer of peach fuzz on it! The transitions in hair growth are somewhat amusing …

    2014-10-01 12.01.10

     

     

  • Not your stereotypical surgeons

    Surgeons get a bad rap for being insensitive and un-empathetic. From the outside, they are seen as the engineers of medicine – socially awkward, mechanical in their interactions, and having no time for patient engagement.

    This has totally NOT been my experience. I’ve see a couple of breast surgeons, a couple for breast surgeon fellows, a plastics resident, and a plastic surgeon. In my experience, the surgeons have been highly empathetic and have spent a large amount of time educating me on my surgical options.

    What has been interesting is that this seems to be part of the learning process. Those who are most empathetic are the attending surgeons. The residents are still learning, so their interactions can feel a little mechanical – they are still trying to figure out the best ways to make connections with patients, but also the best ways to describe things. By the time they are fellows, you see a higher level of confidence in their ability to provide patient education – and you start to see more customization to your specific case. The surgeons themselves seem to be the best at tailoring their discussions to your specific situation.

    One of the best bits of early advice I received was to ‘decide who you wish to trust’ in your treatment. In the first couple weeks after diagnosis, I had decide where I was going to get treatment. I based this, in part, on where I felt comfortable – but also who provided me with the most options. I really liked being in a teaching setting, and having access to more specialists – but that was balanced with knowing that I would spend more time in waiting rooms and receive less fancy care (e.g. the infusion treatment center doesn’t provide lunch).

    After a couple of appointments with my breast surgeon, I decide she is someone I wish to trust. After my first visit with my plastic surgeon (she spent over an hour talking to us), I decide she was someone that I trust. Having made the decision to trust them, allows me to filter through all the additional information and advice that I receive. It allows me to be OK with the decisions I’m making, and allows me to be confident and a lot more comfortable with the idea of my upcoming surgery.

    I just felt it necessary to say, that society gives surgeons a bad wrap – at least from my experience – the breast oncology and breast plastic surgeons have been pretty awesome so far!

  • Flexibility … and some good news …

    One thing I can say for certain, the cancer journey is anything but predictable. I had all of these plans made based upon when my chemo dates would finish … and now things are going to get crazy again.

    My first appointment this morning was with radiation oncology. I saw a resident who was clearly new and needs a fair be more practice at taking histories and listening to patients. He also needs some work on empathy. I am left thinking, how do you teach those skills? I don’t know, but this resident – although clinically wasn’t bad – certainly needed to work on the skills of engaging the patient – but also on things to say and not say to someone on the first consult to radiation oncology!

    When the attending oncologist came in, she began by asking us where we were from and a little bit about us. She introduced herself not just to me but also to my husband. I found myself thinking that the resident really needs to watch the oncologist (perhaps some role modelling) to show how to developed a rapport with me before starting to talk about the cancer. Her synopsis was, given the information they have from my pre-chemo MRIs, and the fact that I’m planning on a bilateral mastectomy, that I most likely will not require radiation. There is the obvious caveat that if the post-surgical pathology finds something, then that assessment might change – in particular if the pathology shows lots of cancer or a specific type of tumor/tumor remnant, then radiation might be warranted. But at this point, the MRI is not indicating that. Yay.

    I should also mention that the resident also did a thorough exam (clearly he was pretty new to this as well – still getting his feet wet) – anyways, he examined my breasts both in the seated and laying down positions – and couldn’t feel anything in either breast, and nothing on the lymph nodes. So, he confirmed that I have no clinical signs of cancer. Again yay.

    Then I saw my oncologist. My blood levels are still declining, but they aren’t low enough to stop chemo or transfuse. With Taxol, I’m experiencing annoying side effects. Again, not bad enough to stop chemo, but enough to be a concern. However, given the lack of clinical signs of cancer (my oncologist also confirmed that he isn’t feeling anything), that we COULD stop chemo and ‘pull the trigger’ on surgery. That it is my choice.

    Part of me has a knee-jerk reaction – I have everything planned out. I have a trip to Ontario booked to see family, I have a trip to Hawaii booked for my breast memorial. All this is based upon finishing 12-weeks of Taxol and have surgery after that.

    Now, if we stop chemo, then we still wait 4-6 weeks for surgery. My body needs time to heal from the chemo (and honestly, I could really use a break right now). My blood counts needs to recover before I can contemplate surgery. But I am encouraged also to have surgery as soon as feasible, because the cancer might not be completely dead. So if it isn’t, we don’t want to allow too much time … surgery needs to happen as soon as it is safe to do so (4-6 weeks after chemo).

    Part of me is feels OK with this. I don’t like the idea of stopping chemo because of side-effects, but stopping chemo because we think the cancer is dead and there is no reason to continue the chemo – that is a good reason to stop it.

    I don’t want to just stop though – I cannot have today be my last chemo day – I need a schedule that says it is my last chemo day – I need to hear the chemo nurses sing the chemo song (they sing to you during your last treatment). I need that in order to feel that it is done.

    So, now I go through reasons why I should stop the chemo – one reason really – side effects. The neuropathy and cognitive disassociation (chemo brain) I’m feeling. The longer I’m on taxol the higher chance these effects can become permanent. In most people, the side effects end within a month or two of the chemo ending, but for some people it is permanent. So the longer I’m on, the more likely there would be long-term damage. That isn’t good. It is a good reason to stop the chemo, even if the cancer wasn’t responding … but given the cancer is responding, it is a pretty compelling reason to decide that I’ve had enough of the Taxol.

    But then part of me says, but you had a plan … Another part of me says, you always knew the plan might need to change … part of me is jumping up and down with joy – this really is the best outcome we could expect.

    And so this week and next, things will get really busy. I will begin with an MRI which will help to confirm what is happening with the tumors. The MRI is the best evidence the surgeons will have, and will be the best evidence I will have. I’ll also push to get the CT of my belly ordered, as that information is needed for plastics. Once the MRI and CT results are in, I’ll meet with both surgeons (breast surgeon who does the mastectomy and plastic surgeon who does the reconstruction) to go through the surgery and dates will get set! I expect lots of appointments in the next few weeks!

     

  • Weekend hiking at Yosemite

    Although paclitaxol chemo is proving to be more of a challenge than I expected, we did manage to get up to Yosemite this weekend for our anniversary. We spent two nights at the Wawona Inn, and managed to get out hiking on both Friday and Saturday – before the rain started. It rained quite heavily at times all night Saturday. When we left Sunday morning, the road report showed that Tioga pass was closed due to snow!

    On Friday we tackled Mariposa Grove – the oldest and largest grove of sequoias in Yosemite. After 45 minutes hiking, I suggested we turn around at the 1 hour mark. After reading a few signs incorrectly, we didn’t turn around but soldiered on and made it to the museum at the top of the grove (we climbed 313m, hiked for 2.5 hours, 7.5km, 12,000 steps).

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    Feeling a little sore on Saturday morning, we opted for a shorter hike up Sentinel Dome (168m, 4.2km, 1h 50m, 7000 steps). The views were spectacular, and we arrived back at the car before any hint of rain.

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    Overall, a great trip to Yosemite. We are glad we didn’t let the weather forecast stop us!

  • Memories of past pain …

    In theory, the body forgets pain. You remember you were in pain, but you forget what that pain felt like – in theory.

    On Wednesday I developed some mouth sores. They haven’t been bad, but they have had me on edge.

    Daily, I experience nerve pain – sharp pains that come on suddenly and then fade. They aren’t actually that painful (at least right now) – more like someone unexpectedly poking you with a needle. They are annoying. Again, they put me on edge.

    While hiking on Saturday I realized why these pains were putting me on edge – it is because I haven’t forgotten how bad they can get. I remember quite well the pain of mouth sores the last week of AC – when I couldn’t talk and was limited to eating soft bland (ph neutral) foods. I remember quite well the pain of the first cycle of Paclitaxol when the shooting pains kept me up all night (before I had painkillers and knew how to manage it). I realized that the small hits of pain were reminding me of the larger pain – and it was the memory of pain that was making me on edge.

    Now that I realize what was happening, I’m OK. I can re-evaluate where the pain is now – and move beyond the memory of previous pain – but I had to realize that it wasn’t the current pain that had me on edge, rather it was the memory of previous pain, which is now gone. Hopefully the memories too will fade!

  • How do I be an ‘engaged patient’ in a hospital gown? #medx

    Since my diagnosis with breast cancer, I’ve seen many different specialists (breast surgeon, medical oncologist, chemo dermatologist, plastic surgeon). My doctors appointments have gone something like this.

    1. Medical assistant takes my vitals
    2. Medical assistant directs me to remove clothing (usually waist up) and put on a gown (opening in front)
    3. I wait for the doctor. In the worst case, I waited over 2 hours .. but typically I wait about 10 minutes.
    4. Doctor comes in and talks to me (anywhere from 10 minutes to over an hour depending on the type of appointment)
    5. Doctor examines me (takes 1-5 minutes)
    6. Appointment ends and then I get dressed

    I recall those first appointments. I remember feeling awkward talking to the doctor while I was undressed. I found it odd that the doctor would do the entire consulting/discussion (with appointments that were 30+ minutes involving a fair bit of question and answer) while I was undressed. I find myself wondering if this is an oncology thing or an American thing? I can tell you one thing, it isn’t a setup that encourages patient engagement. It wasn’t until a friend mentioned it, that I realized the power dynamic at play here. By being the patient, I’m already in a lower ‘power’ position in the healthcare system. By having me remove my clothes, that just increases the imbalance (or ensures the imbalance is maintained). It isn’t conducive to a collaborative dialogue, nor does it encourage me to be engaged.

    Now, in Canada, I cannot talk about oncology, only primary care. In the primary care setting, the doctor first comes in and talks to me. If an exam is needed, the doctor steps out of the room while I undress and put on a gown. The doctor returns to do the examine and talks a little bit, then leaves while I get dressed. If further discussion is needed, it happens after I’m dressed. I never have those awkward moments where the doctor is explaining something to me and I’m sitting there in a hospital gown trying to ask questions and absorb all the new information I’m getting. It just doesn’t happen.

    I have learned how the system works here (Stanford Women’s Cancer Center). I now bring with me a hoodie that zips up the front. After changing into the gown, I put my hoodie on. When the doctor comes in, I can ask all the questions I need to ask and feel comfortable sitting in the chair (not on the exam table). With my hoodie on overtop of my gown, I don’t feel like I’m undressed, and I don’t get cold. When it comes time for the exam, I can easily unzip and remove the hoodie. With my hoodie zipped up, I’m not sitting there half exposed while trying to have a conversation with my doctor. I feel a lot more empowered and a lot more comfortable.

    I have learned how to work-around the system to ensure that I’m empowered – but I cannot help wonder why the system is the way that it is? I suppose there is an argument that it saves time, but really, given the back-and-forth and other things that are going on, especially in a teaching setting, I don’t think it actually makes a difference. Perhaps this is just a legacy practice from a time when the patient’s feelings were not considered, and with the push to have engaged patients, perhaps we need to start rethinking these processes with the patient in mind?

  • Reconstruction update

    Saw the plastic surgeon yesterday. I really liked her. This is good.

    We walked through the different surgeries and options. She validated that I’m a good candidate for DIEP/SIEP reconstruction based on physical exam. There is another test that she will order – a CT of the belly – to see whether or not I have big enough veins/vessels/something. The idea is that the CT will tell her if my vessels are big enough to allow for the surgery. So, this is good. Now I wait for news from the schedulers. I hope that December 17th still works – it is a challenge to schedule this surgery as it is an all day event for the plastic surgeon (8-10 hour surgery).

    The go/no-go on this surgery will be determined by scans done at the end of November – before the next surgery consult. At that point, scans are done to see just how well the chemo has worked. This will be the best information we have prior to surgery. Decisions will be made based upon these results.

    What was good was that she helped me to better understand the recovery and helped me feel more comfortable with both the surgery itself and the recovery from the surgery. She helped me to understand that regardless of whether radiation is required, the option that is likely to have the best outcome (both aesthetically and recovery wise) is to do the reconstruction immediately (so with the BMX). From her perspective, I am healthy. I have no comorbidities (that is, I don’t have other illnesses that would increase my risk of complications).

    I’m amused at how she looks at my body and wants to sculpt it – to reshape it – and casually mentions a revision surgery that involves lyposuctioning various extra fat bits to allow for a better cosmetic outcome. She comments that you don’t realize the fat is there until after the first surgery – you become more aware of different fat pouches after they remove the belly fold. I cannot help but feel pleased about this potential sculpting, but I’m also cautious about it. It is not surgery that I would choose to do in and of itself.

    Somehow, I am feeling a lot calmer about the surgery – a lot less anxious than I was before. It seems more like something that I can handle – I can get over it – I can recover from it.

    I feel a little calmer at the idea of looking down after the surgery and seeing myself – if they are able to spare the skin and nipples (they only do this if the various in-surgery biopsies are clear) – then when I look down it will look like me. My outside will be the same, the inside will be different – but it will still all be me. With less belly my hips will look huge .. instead of difficulty fitting shirts, I’ll have difficulty fitting pants … and yet, this doesn’t bother me. I can imagine myself looking sleeker – feeling good about my body.

    For the last week I’ve been replaying the diagnosis … I don’t know why, but my mind seems to be on replay. I keep going through the day in my head – the day everything changed. Today I’m able to see beyond chemo and even beyond surgery – and that is good.

    This decision feels right …

  • Some recent purchases …

    After a grumpy chemo session and leaving the ITA later than we planned, we decided to go out to dinner. I got the all clear for sushi last Monday, but we had not managed to have a sushi feast yet, so Monday after chemo I finally got my chance. Unfortunately, my favorite sushi/sashimi place isn’t open on Mondays … however, our second choice was pretty decent and met the craving.

    2014-09-22 18.11.34

     

    My other challenge was in taking supplements. I don’t take that many prescription pills anymore, but I “should” take a few supplements that might help with blood counts and neuropathy. I got a message from my oncologist office that there is no clinical evidence to suggest that the supplements actually make a difference but there is no harm in taking them either, and heck, if the placebo effect works then way not. The challenge is in taking them – I hate opening too many pill bottles at once, and I forget. So I went out and bought myself a fancy am/pm pill case. That way, I can fill in a weeks worth of morning and evening pills (the only regular prescriptions I take are either when I wake up or before I go to bed), and I split my supplements across the two, so I’m not taking too many pills at once. Here is hoping that my sorting them out once a week makes it easier for me to take them. I figure it will work for at least a week or two, while the idea is novel.

    2014-09-23 22.06.33

    I’m now 1/3 of the way through Paclitaxol and 2/3 of the way through chemo (yay) … weekly chemo is certain proving to be more mentally taxing than biweekly chemo. Paclitaxol is also a longer treatment (12-cycles) which is also proving to be more difficult to mentally grasp. With AC it was only 4-cycles, so easier to celebrate and count down as things completed. Paclitaxol just seems to be long journey.

     

  • Pathological Complete Response and Comments on Reconstruction

    I’ve been reading up a bit on the expected pathology reports for post-mastecotomy after neoadjuvant chemotherapy (that is, what should I be hoping for in the pathology after chemo – and what does that mean?).

    To start with my new term for the day is “pathological complete response” or pCR – this indicates the degree to which the chemotherapy treatment has killed the cancer. According to Cortazer et al (2014), you are considered to have a pathological complete response if:

    • absense of invasive cancer or in-situ cancer in breast or the axillary nodes (ypT0 ypN0)
    • absence of invasive cancer in breast or axillary notes but in-situ is present (ypT0/is ypN0)
    • absence of invasive cancer in breast but in-situ and nodal involvement (ypT0/is)

    Note that definitions for pCR are not consistent – so each study defines it for their own analysis. For those in the analysis with the same type of tumor I have (based upon my most aggressive tumor which is IDC ER/PR+ HER2- grade 3) the pathological complete response rate is 16.2 % (95% Confidence interval – so 13-4-19.3). This means that I can expect about a 16% chance of having a complete pathological complete response. This takes into account everyone with the same type of cancer, but doesn’t separate out those who had clinical indications of node involvement prior to surgery/chemo. Of those who had no clinical indication of nodal involvement regardless of cancer type the numbers are 18.8 % (95% CI 17.9-19.8). So I’m hoping for the higher number, since I don’t have any indicators of node involvement.

    The research says that for the type of tumor that I have, if I have a pathological complete response then it is a good indicator of my overall survival.  The studies don’t say anything about survival if you don’t achieve pathological complete response. The purpose of the two studies I looked at was to determine when/if pathological complete response was a good indicator of disease free survival. The answer for my type of cancer is yes – if the pathology comes back with pCR then that is a good indicator of disease free survival.

    Note that it takes along time for a study to be published – so this study published in 2014 is based upon patients that were treated between 1990 – 2011.

    The second study that uses more categorization and is more detailed. It gives me a higher likelihood of achieving pCR (11.2 % ypT0 ypN0, 15.4% ypT0/is ypN0, 17.6% ypT0/is ypN0/+). The one quote which is interesting is “subgroups with highly proliferating tumors, pCR can discriminate between patients with good and poor prognosis accurately” (von Minckwitz et al., 2012, p.1802).

    So, I now know what I should be hoping for when the pathology comes back after my bilateral mastectomy surgery.

    The one thing this exercise is telling me is that I really want to know the pathology from my bilateral mastectomy before I commit to the DIEP flap surgery. This has me leaning towards a skin sparing mastectomy with immediate reconstruction with tissue expanders. This means that if I want the DIEP surgery later, I can have it. Or I can have the expanders removed and skin cleaned up if I don’t want it. It leaves the doors open for reconstruction or not – and the decision will likely depend on prognosis. If I’m going to live a long healthy life post breast cancer, then the DIEP surgery is a worth-while investment in my time and physical energy. If the prognosis is not so great, then I’d rather be done with the surgeries and get on with living.

    Reference

    Cortazar, P., Zhang, L., Untch, M., Mehta, K., Costantino, J. P., Wolmark, N., . . . Valagussa, P. (2014). Pathological complete response and long-term clinical benefit in breast cancer: the CTNeoBC pooled analysis. The Lancet. Retrieved from http://www.rits.onc.jhmi.edu/dbb/custom/A1/files/12/pCR_Cortazar.pdf

    von Minckwitz, G., Untch, M., Blohmer, J. U., Costa, S. D., Eidtmann, H., Fasching, P. A., . . . Loibl, S. (2012). Definition and impact of pathologic complete response on prognosis after neoadjuvant chemotherapy in various intrinsic breast cancer subtypes. J Clin Oncol, 30(15), 1796-1804. doi:10.1200/JCO.2011.38.8595

     

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