BC Becky

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

Tag: educating

  • Bilateral Mastectomies

    A friend sent me an email with a recent article in the New York Times about the prevalence of bilateral mastectomies entitled “The Wrong Approach to Breast Cancer“.

    I read the article with much interest but also much distain. There are several issues that are not addressed in the article, but it also highlights some important trends and issues in breast cancer treatment. Let me start by sharing a couple of acronyms that will make this discussion easier – BMX stands for bilateral mastectomy, and PMX stands for prophylactic (i.e. preventative) mastectomy.

    I also need to point out that the discussion is not about women with be BRCA1/BRCA2 breast cancer genes. Some useful statistics: 12% of women in the general population develop breast cancer, of these, up to 5-10% (yes hazy statistic there) MAY have an abnormal BRCA gene. For this small percentage of women, the likelihood of breast (80%+) and ovarian (25%+) cancers is huge. Prophylactic surgery for these women brings peace of mind.

    The NYTimes article highlights that PMX is unnecessary as it does not improve survival rates. The article highlights the over-use of this choice. What the article doesn’t say is that one of the reasons so many women choose PMX is that they are sold on the ease of reconstruction. In the US, if a women has breast cancer, insurance is required to pay not only for treatments but also for reconstruction (I was told this at my very first surgical visit the DAY I was told I had cancer). A women from the UK commented that she was required to see a psychiatrist because she did not want reconstruction. The pressure to reconstruct is huge, but also, the way in which is it is sold is also misleading. The potential complications are understated.

    The NYTimes article talks about statistics but does not take into account mental health. The far majority of breast cancers occur in only one breast (I’m an oddity). In many cases, women have the first breast removed, but then choose the PMX for the second breast. In some cases this is because of fear of cancer returning, as stated in the article, but in other cases it is because the women have difficulty living lopsided. The lack of symmetry becomes a constant nagging reminder of the cancer. It can be too much for some women. There are many women who are very happy about their choice of PMX and reconstruction, and many women who are happy about their choice for PMX and no reconstruction. What concerns me about this article is that it research stated like this gives insurance companies a reason to NOT do the surgery, when it may be in the best interest of the individual. Mental health and quality of live after surgery are two variables that are not considered.

    I’m concerned for women who have PMX because they are sold on the ease of reconstruction, but I’m also concerned about potentially denying PMX for women whose quality of life will be significantly improved by it.

    My personal case is different. I don’t qualify as a statistic in most studies because the nature of bilateral disease is not understood, but also because it is not very common. I have multi-focal cancers in my left breast (two tumors in different parts of the breast – the first is the one I felt (invasive ductal carcinoma, IDC grade 3 about 4cm), the second is DCIS (stage 0 non-invasive). In my right breast I have about a 2cm mass IDC grade 2 (it could not be felt and was found by a very good radiologist). So for some unknown reason my body suddenly started to grow breast cancer – and it did it quickly in multiple places. For me, the right choice is a BMX. It is not prophylactic, as I am not doing it to prevent a cancer from occurring. The cancer is already there.

    I could have a lumpectomy to remove the three areas – but then I would need radiation treatments (I might still need them). I would need to have mammograms and maybe even breast MRIs every 6 months for the rest of my life. I would need to go through biopsies every time they found something suspicious, and any shadow would be considered suspicious because of my history. I would also be so very oddly deformed, with both breasts being different sizes and shapes. I would have a constant battle with body image. For me, this would lead to a terrible quality of life. I don’t want to live having to constantly worry about how I looked or when the next doctors appointment would be. It is bad enough to go through that during active treatment, I don’t want that to be my life after treatment.

    I love the idea of being flat and having choices. What I hope for most is that my breast surgeon does a good job and I have nice clean scars. Then I can choose to wear foobs if I want an outfit to look a certain way, but I can also choose to not wear anything on a hot sunny day. I love the idea of a bra free life! To be honest, I rarely wear one now – but I’m finding that with all the insults to my breasts (biopsies and chemo) that I need to start wearing one more often, as they need to be supported.

    What I really want to say about the NY Times article is that breast cancer treatment is an individual choice. Statistics can be useful in helping us make a choice, but the right choice is an individual one. For some women a PBX is the right choice, even if there is no statistical advantage to it, for others it is not. I get a bit insulted when the article assumes that women are making choices that are “not truly necessary” and assume that the doctor knows best, when the doctor isn’t the one having to live with the decision.

  • 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!

  • Breast surgery

    I am coming to appreciate the roles of the different surgeons. I have not yet met with a plastic surgeon (PS), but will probably set that appointment up in the next few weeks just to get the conversation started. With breast cancer in the US, you are usually dealing with at least two surgeries. The first surgery is done by the breast surgeon (BS). This surgeon specializes in removing the cancer. You can have either a mastectomy (where they remove the entire breast) or a lumpectomy (where they just remove the cancer). That is an overly simplified explanation – as both surgeries depend on what you plan to do after – that is the reconstruction or no reconstruction. The two surgeons work together to help give you the look you want post-surgery. Some of the choices your breast surgeon makes depends directly on what you want the final outcome to be.

    So, it occurs to me after looking at several pictures of not too nice results post mastectomy/lumpectomy surgery, that I want a plastic surgeon that has experience doing trans female-male top surgery. You see, if the plastic surgeon knows how to do trans surgery well, then they would appreciate the importance of appearance. And if they have experience with female-male trans surgery then they would get what it means to be flat. I’m surprise to realize that appearance matters to me. I want to look good naked … I’m OK with being flat – not having breasts – so I don’t think reconstruction makes sense for me (at least that is my current thinking) – but I do want to look good naked. I want to be able to look at myself in the mirror and be proud of what I see (rather than sad). I’ve been warned never to look down … the downward view of your breasts is the view the only you see, and it will never be the same … everyone else sees the outward view!

    One thing that I find very interesting in this process is that I have a greatly improved body image. I would not have expected that result. I’m a lot less vain now – and a lot less worried about my other lumps and bumps – but I do want to be able to go topless. I don’t want to have to feel like I need to cover up because I have odd disfigured lumps and bumps where my breasts used to be.

    I’m reminded of my early days when one breast started growing before the other (midway through grade six if I recall correctly). I found myself wearing training bras because I did not want to look lopsided – I always used one of the stalls to change in PE class, cause I didn’t want the other girls to notice that I was lopsided. Now, I find myself wanting to be the poster child for women with mastectomy who choose not to reconstruct – I want to model swim suits for real women. A few months ago, I supported a Kickstarter campaign for Nettle’s Tale swimwear. I bought a swimsuit but never got around to sending them my sizing information (couldn’t find the measuring tape in my Ottawa apartment). After diagnose I reached out to the folks at Nettles Tale as I cannot give measurements now and I’m also not sure whether the suit I picked will work!  I threw out the idea to the folks at Nettle’s Tale swimwear of modeling for them as they are hoping to come out with a new line of swimsuits that support prosthetic boobs. They were excited about the idea, but of course nothing is planned yet (I don’t live in Vancouver, which poses a challenge, but also it will be a year before I’d be ready anyways) – but I thought I’d share that I am serious when I say that I want to be a swimsuit model when this is all done!

    I learned a new word the other day – foobs – which is short for fake boobs. I had heard falsies before, but foobs was new to me. Today I learned that the best place to buy a variety of foobs is eBay. Buying new can be rather expensive (eventually I’ll need to see what my insurance will cover). Since both the breast cancer and the trans community use them, there is a market for lightly used foobs. You learn something new every day!

  • The Power Port or Dignity Port

    So, I had my port installed yesterday. The interventional radiologist that installed it told me he was installing a Power Port, but the package they gave me calls it a Dignity port – so now I don’t know what kind of port they actually installed! I’ll have to make a phone call over to interventional radiology (IR) when their office opens to get clarification (it is completely under the skin, so I cannot see it). Looking on the Internet, they are different things. I kind of like the PowerPort better just for the name. When he said it was a PowerPort (rather than mediport), I thought immediately of the Power Rangers, and thought myself a super hero. I kind of like the idea that I’ve had super powers installed – as I think I’ll need them as the weeks progress!

    I’ve heard from several others on chemo that it was a good decision to just get the port. The idea is that with the port, they don’t need to find a vein each time they need to draw blood or give treatment. Given how difficult it is for them to draw blood from me under ideal circumstances, this was actually a pretty easy decision for me.

    The procedure itself went well. It wasn’t at all the same kind of sedation as cataract surgery, though they called it the same thing. I was pretty much high as a kite blabbing away to the drug dealer (nurse who gives the drugs). He said he visited Canada and asked about the unique Canadian food. It took me a minute, then I realized he was talking about poutine! It is funny because we see poutine on some menus here (they try and make if fancy with spicy gravy and totally do it wrong), and it is associated with Canada – where I’ve always associated it with Quebec. Somehow we managed to talk about poutine for half an hour while the surgery was being done. Again, I was pretty loopy and talkative, and what I remember most is that my mouth was pretty dry from talking too much after not having had anything to eat or drink since the night before.

    Immediately after surgery they offered me food (I was starving) and a drink. I think I ate more yesterday than I’ve eaten for weeks!

    With all else that was going on, I also managed to slip in a teeth cleaning yesterday. I had seen the dentist back in March in Ottawa, so it wasn’t strictly necessary – but I read somewhere that it is recommended to do it before chemo. You cannot do it during chemo, as you have an increased risk of infection and one of the potential side effects is mouth sores. So, that was one more task off the pre-chemo checklist. We liked the dentist, so that too is one more relocation task accomplished.

    We are hoping to get a few days off of everything next week. Scott had booked vacation over a month ago (pre cancer diagnosis), and we have a campsite booked at Yosemite Monday – Friday. We won’t stay that long, but it would be nice to go up for a couple of nights. I haven’t been to Yosemite yet (its about a 4 hour drive from here), and I’d love the opportunity to spend a couple or few days in nature forgetting about the last few weeks (decompressing) and mentally preparing for the months ahead.

     

  • Significance of dates and getting ready for chemo

    It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

    Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

    On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

    We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care. Photo Jun 25, 2 35 31 PM

    Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

    I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

    I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

    Chemo calendar:
    July 7 – AC
    July 21 – AC
    Aug 4 – AC
    Aug 18 – AC
    Sep 1 through Nov 17 – weekly T

  • Slash, Burn, Poison, and Starve

    A new friend commented to me that the treatments for cancer were to slash, burn, and/or poison. It bugs me that the most effective treatment and first choice is always to ‘cut it out’. I’ve added starve to the list for breast cancer, as that is one of the more effective treatments if you have positive receptors.

    Slash refers to surgery. It is often the first line of defense – just cut it out. For many women with small slow growing tumors, this is the only treatment required.

    Burn refers to radiation. Radiation is another localized treatment. If there is a risk of the cancer spreading locally (usually goes with the lumpectomy choice of surgery rather than mastectomy, where the surgeon cannot alway tell whether they ‘got it all’) then radiation is used to burn away any cancer cells that might remain.

    Poison refers to chemo. Chemo is a systemic treatment and affects your entire body. The reason you do chemo is to try to make sure that all cancer cells in your body are killed. If there are any cells floating around, you want to make sure they have been killed.

    Starve refers to hormone therapy. I’ve added this one to the list. If your cancer is hormone positive (80% of breast cancer is), then what is known is that the cancer feeds on Estrogen or Progesterone or both. So, once the slash/burn/poison treatments are complete you move on to starvation treatment that suppresses your bodies ability to produce the hormones that the cancer feeds on.

    One challenge many women face is with the starvation therapies. People often see the ‘treatment’ as finished after slash/burn/poison, and don’t realize longer duration effects of the hormone therapy. The duration of the hormone therapy keeps changing. They are back up to recommending 10-years of tamoxifin for pre-menopausal women (this had been reduced to 5 years at one point). Treatment doesn’t end just because you are not visiting the hospital once a week for an infusion. It becomes a silent pill that you take every day for 10-years, all along praying that the cancer doesn’t return.

    I’m not ready to contemplate the 10 years of treatment. I’m not ready to think beyond the first cycle – which for me will be poison. I’m too afraid of the spread. Doing surgery first would have meant a 4-6 week delay in the start of chemo – that is a 4-6 week opportunity for the cancer to spread.

  • 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 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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