BC Becky

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

Category: Hormone therapy

  • Letrozole – so far so good

    Letrozole – so far so good

    Back in October, when my oncologist and I agreed I was done with Herceptin, we decided I wouldn’t do anything but let my body heal until January. That’s when I’d give Letrozole a try.

    Stopping Herceptin felt like a relief. For the longest time, I couldn’t distinguish which symptoms were caused by chemo, radiation, COVID, or Herceptin itself. They all blurred together. Eventually, I realized Herceptin was the culprit behind two days of fatigue and flu-like symptoms after every infusion. A week later, my heels would crack so deeply they hurt—a pain that even special creams and heel socks barely managed. My nails became brittle and splintered at the slightest touch, and the skin on my thumbs cracked along the seams of my fingerprints. I’d resort to using crazy glue to hold them together.

    Even after moving from three-week to four-week infusions, I was miserable half the time. I couldn’t imagine continuing until the end of the year.

    My oncologist, who I respect for this wizdom and experience, left the decision up to me. “If the cancer comes back, will you regret stopping early?” he asked. I didn’t even hesitate: “No.” I’ve learned not to regret decisions made with the best information at hand. When my scans came back clear, I stopped Herceptin and allowed my body the time it needed to recover.

    When January arrived, I approached Letrozole with caution. My oncologist reassured me not to dwell on my past experience with hormone therapy. Back then, I started too soon—driven by fear—and as a pre-menopausal woman, the effects were far more severe. This time, I’m post-menopausal, and we’re taking things slow.

    Starting from a different place makes all the difference. It has been not quite two weeks. The initial main side effect: intense back and hip pain. It feels manageable, though, especially with regular exercise like boxing or walking. If I skip a workout, the pain catches up with me, and I crash, needing a 1–2-hour nap every few days.

    But I’ve turned this challenge into motivation. The fear of a sore back pushes me to lace up my shoes and move. I’ve even upgraded my headset for boxing, and I’m having a blast with it!

    As time has passed, the side effects seem to have diminished. That or the regular boxing is doing my body good. Perhaps both are true!

  • Some better news

    Some better news

    After much waiting during the day, my oncologist finally called. He said that next time I should go about my day normally, and if I miss his call he will call back – he makes sure he gets everyone who is scheduled for a phone consult. That is good to know.

    We talked about next steps, but there isn’t really much to report. My heart scan was good, so I will have my next Herceptin (trastuzumab) infusion today. This will be number five. Before the nine one, I’ll have another heart scan and then will talk again with my oncologist. At that point we will start talking about hormone therapy, since my cancer was also hormone positive (just not as highly positive as before).

    That timing allows me to heal from radiation before doing anything else. Since I’m on trastuzumab for a year, he is encouraging us to take this one step at a time. There is no rush – so I can heal from one thing before adding another. The first time I went through this, I jumped onto hormone therapy too early – I had not yet healed from surgery – such that I could not tell the cause of my various symptoms. So this time, it will be one step at a time.

    I’m not feeling worried about it. I’m just happy to be feeling as well as I do now, and plan to take advantage of three weeks in Halifax for radiation to explore the city and different parts of our province. We even bought tickets for a concert – a tribute to Gordon Lightfoot with JP Cormier and the Nova Scotia Symphony. We will need to stay an extra night in Halifax to see it – as it is a Friday night concert – but well worth it. It will be a late birthday present for me.

    After cycle 9 of trastuzumab we will begin trying an AI called Letrozole. I didn’t try that one last time, so hopefully this one will be nicer to me. I’ve also been in menopause for a while now, so it should be easier on my system than the last time I tried an AI – where I needed an ovarian blocker first. I do hope that it works out better this time.

    After we figure out the AI, then we will talk more about Zometa – which is a bone builder. It has some pretty harsh side effects but it also protects against bone metastasis.

    At the end of the call, I asked him for a prognosis. His words were interesting – starting by staying, it depends on whether the cancer comes back (well ya, no kidding). But his best guess number was around a 15-20% chance of it coming back. That is much nicer number than 50%. In part, his attributes this number to the chemo, trastuzumab, radiation, and hormone therapy. That is, we are doing a lot to help bring that number down from 50% to the 15-20%.

    For now, it is one step at a time. I’ll be in treatment until next fall – when I finish the one year of trastuzumab. Hopefully by then I’ll be stable on some kind of hormone therapy. That will be at least five years – but there is no point in looking that far forward at this time. As I’ve learned, a lot can happen after active treatment to change the longer term trajectory.

    I’m still sticking to my plan to make this a good summer – after five years of working on Treehouse, at times more than full time, we are both ready for a break. We had talked about taking time over the summer after I finished my PhD – but then cancer happened, so that break never happened. We need it now more than ever.

  • Getting flustered

    Getting flustered

    Since my oncologist wants me on endocrine therapy for 10 years, I started taking low dose (5mg) tamoxifen. I have been on it for just over a month. At first I was getting slight headaches, but I was taking it at night so it wasn’t really affecting me.

    What have noticed is that I seem to get easily flustered when I have too make too many decisions in a short period of time. I went to the movie the other day with some friends, and the act of buying the tickets through me for a loop. Since they didn’t have 5 seats in a row, we had to sit in a group of 2 and a group of 3. But I couldn’t make that decision. I couldn’t figure it out. I couldn’t read the screen that told me which seats were available. It was just too much to process.

    I notice that I have an underlying level of anxiety that I don’t recall having before.

    It was on my walk around the block today – which I’m doing now – yay, I realized that the flustering feelings align with me taking tamoxifen. It occurs to me now that it is meds that are causing this feeling, rather than my brain not behaving. There is some relief in that, as it means that when I stop the meds my brain will work better – but it also isn’t good because I need to be on the meds, and the alternative, and aromatase inhibitor, is so much more potent and likely to have worse side effects.

    For now I can live with it. Now that I know the source of it, when the flustering starts to happen, I can try and use some cognitive behavioural therapy to change my thinking and calm things down. In theory, that will help. I won’t know until I try it.

    The first step is always to identify the problem, so I can say that I have at least achieved that.

    Feature image by Hans-Peter Gauster on Unsplash.

  • Five more years … and a back update

    Five more years … and a back update

    It has been a whirlwind over the last two weeks – with an appointment with my oncologist and an appointment with my back surgeon.

    I was pretty bummed out after my appointment with my oncologist. He again said that I was moderate to high risk for recurrence and that he wants me on some form of hormone therapy for another 5 years. We talked about options, since I really didn’t go through all the options when I stopped a couple years ago. When I stopped I was in pretty poor health. I had just been diagnosed with celiac and high blood pressure and was suffering from lymphedema in my left arm. There was just so much going on that I had to remove variables in order to figure things out, and the first variable was hormone therapy.

    In our prior visit my oncologist floated the idea of 5mg of tamoxifen. I think it is something they are testing for cases of DCIS and previvors (BRCA without a breast cancer diagnosis). Anyways, I agreed to give that a try. And so, for the last four days I’ve been taking 5mg of tamoxifen at dinner time. It causes a slight headache (or at least it did the first couple of days, last night went better). Fortunately, I’m usually pretty mentally burned out by dinner time, so it doesn’t have a hugely negative affect on my productivity. So far, it is something I can live with, so I’ll try that for the foreseeable future.

    I also had an appointment with my back surgeon. He confirmed that we would not do a fusion. He also explained that it would be a “partial laminectomy”. His goal is to remove the least amount of bone possible in order to still reach the nerves. Unfortunately, one of my disk herniations is on the side, which means he will need to move the muscle on the one side to get access. That is likely the part to cause the most pain, as it like spraining your back (ouch). I’ll have a 4 inch incision, but most of that will be superficial, as they will make a tiny hole in the area under L5 in order to access the nerve there and he will shave the disk herniation that is causing the pain. The other herniation at L4-L5 is lateral, so it means he needs to move the muscle to access it. As I understand it, it is about a 1-2 inch area.

    In the end, I feel a lot better about the surgery. He is being as minimally invasive as possible. He is also doing the minimum that needs to be done to clear the nerve pain. I am hopefully that after this I can get back to hiking. It has been a year since I’ve been able to go on a decent hike and I miss it more than you can image.

    What I wasn’t encouraged about is some of the degenerative changes in my back. These changes mean that at some point in the future, I’ll likely need a fuse – but he commented that if I’m careful to avoid lifting anything over 10 lbs and avoid too much strain in bending or twisting, it could be 25 years before the fusion is needed.

    I can hope to live long enough for that to happen. He commented on maybe needing it when I’m 75. This might sound rather morbid, but I just cannot think about being alive for that long. With both my parents dying in their mid to late 60s, and my history of breast cancer, I think it would be a miracle if I can make it to 75! That being said, getting back to hiking and regular exercise will go a long way to helping make that happen. It certainly won’t happen if I become immobile.

    Come January I ask for your prayers and healing thoughts as I do this surgery. I am not allowed to break a sweat for 6 weeks, as the surgeon wants to ensure the incision is fully healed before I do anything cardio related. I am also limited to walking about a 1/2 mile. I’m glad I asked the question, because all the paperwork says that walking is good, but that is written for people who generally don’t walk much. Had I not asked I likely would have been trying to walk 1, 2, or even 3 miles which would not give my body enough time to heal.

    And with that update, I need to get back to work … and back to focusing on dissertation writing and end of term marking.

    Happy Thanksgiving everyone.

    Feature image was taken at Cape Disappointment State Park in Washington.

  • I cannot help but ask…

    I cannot help but ask…

    You would think that by now I would remember the answer to the question, and yet, I keep asking. This time I was prompted to ask because a research paper crossed my stream talking about a potential genomic subgroup of ER/PR+ (hormone positive) breast cancer that might be useful in predicting the likelihood of late recurrence (https://www.nature.com/articles/s41586-019-1007-8.epdf).

    So, I asked my oncologist about what the plans might be after I reach 5 years – a time that is approaching. I had a thought that after 5 years I’d just be done with hormone therapy. Now I’ve asked this question before. And every time I ask it, I pretty much get the same answer – based upon the characteristics that are known about my cancer, my oncologist recommends 8-10 years of some form of hormone therapy. I had hoped that after 5 years of lupron, that I am most certainly in menopause by now, that I would no longer need the shot. Unfortunately that isn’t the case. Lupron is providing some level protection even if I’m not on an aromatase inhibitor.

    I chatted with my oncologist on the phone today about this – mostly because it was bugging me, but also because I’m thinking about what our life my be like in 2 years, and was hoping that didn’t involve regular cancer therapy. The answer is still 8-10 years of some form of hormone therapy. He commented that some of the recent research is showing a slightly larger incident of cardiac issues for those who do lupron plus AI versus tamoxifen. He mentioned that we could try low dose tamoxifen – and by that he is saying now that 5mg looks like an option. He commented that we can try that at some point but should wait until such time as I’m not trying to do anything particularly mentally taxing like, say, defending a PhD dissertation.

    And with that, we will follow up again at my regularly scheduled appointment in about 8 weeks. We can discuss further what we might do. But for now, he advised to take it ‘one day at a time’. Of course, every time I hear the 8-10 years bit I get sad – even though I’m now closer to the eight than I am to zero – so I’m looking at less time with hormone therapy ahead of me than behind me.

    I seem to have a cold, and it is raining outside … these also have a great affect on my mood … so it may have nothing to do with the 8-10 years message. OK, not likely … I’m pretty sure the 8-10 years will keep me thinking the same thing – I have a sense that I’ll be on hormone therapy for the rest of my life.

    Feature image by PresenterMedia.

  • A long overdue update

    Sorry, it has been awhile since I have written anything. Life has been a little crazy – and I haven’t crashed yet – but I know it should happen. I’m in a state of no emotions right now.

    Last Saturday (a week ago), I attended an all day writing retreat with BAYS. It was truly healing. I wrote a couple of stories – or at least made a start on them. I then read the stories. This allowed me to do some emotional processing around mom’s passing. I cried a lot during that session, and I’m so thankful to the BAYS gals and the facilitator for giving me that chance to express myself. Once I get a chance to edit the stories a little, and finish writing them, I’ll share them here. That might take a bit as I have a lot on my plate right now.

    Then, last week, I attended the National Breast Cancer Coalition’s (NBCC) Project LEAD Institute. It was an intense week of education about breast cancer science – basic biology, cancer biology, immunotherapy as well as information about the different types of research studies including clinical trials and epidemiology (cohort and case-control studies). I met many really awesome advocates and scientists. I really wish I had more time to spend getting to know the people – but it was a jam packed week. I’ll write more about this when I get a chance to mentally process it.

    This week I’m going to try and focus (ya right) on preparing my classes for the fall semester. I’m teaching two courses now: Foundations in Instructional Design and Learning Technology (the first course in the program) and The Design and Instruction of Online Courses (one of the last in the program). I love watching the students grow and build confidence throughout the program.

    I also delayed my Lupron shot (hormone therapy) in order to attend Project Lead. This has led to me getting crazy headaches. I get my shot later today, which I hope means the headaches will go away!

    I find myself thinking as I write about my mother reading my blog posts – and then I realize she isn’t. It is that kind of thought that I have noticed lately. I wonder how mom will react to the different things I’m doing or posting – then I realize, that I won’t hear or see her reaction.

     

  • Watch out for my wrath … I’m anti-hormonal

    I had written the first part of the title – ‘watch out for my wrath’ on Wednesday when I realized I was way overreacting to things again. I first notice it when I start yelling at drivers for mild infractions, a happened on Wednesday on the way to the gym (my first awareness of being overly emotional/angry). Then on Thursday it was the person at Costco. I was trying to return something. I had a cart because it was heavy. I first went to the in-door to get it tagged, then tried to make my way to the return counter. Unfortunately the line up of people departing was too long (and two deep), so I went out side and tried to get in on the other side of departing carts. The person checking receipts at the door was in my way (just slightly, I couldn’t quite get behind her). I said ‘excuse me, I need to get by’, she ignored me, I said it again, she stepped more in my way, ignored me, and told the next person who was trying to exit (and let me through) that I was ‘going the wrong way’. Which annoyed the hell out of me. Fortunately, I saw an opening in the crowd of outgoing carts, that I could dart in and get to the returns desk. I was most certainly NOT going the wrong way. I complained to the returns person, who was truly really helpful – but I also realized that my emotional response to the situation was WAY off the mark. It should have been merely annoying, rather than something that had me steaming mad.

    So, what caused this wrath? Well, I decided on Tuesday that I’d try going back onto an aromatase inhibitor (AI). This knocks my body’s estrogen levels down an extra notch. The lupron that I take (now every 2.5 months) knocks the estrogen to below menopause levels – that and not having any breast tissue – so the AI takes it down another notch. It is not without its side effects. The mood swing was manageable, as I would have mellowed out after a week or so. Unfortunately, the headache and severe brain fog was not. The increased joint pain was also likely to be an issue, especially given the state of my back. So, I stopped.

    This AI experiment only lasted two days. At my last oncologist appointment, he said that if the side effects of the AI were negatively effecting my quality of life that I didn’t need to keep taking them. It was kind of odd, as he suggested that, not me. I know many women my age who’s oncologists are pushing them into tamoxifen/AIs even though they are having horrible side effects. I can only imagine that they have other factors at play – younger age at diagnosis, more aggressive cancer, breast tissue (so not double-mastectomy), or a gene that puts them at higher risk of breast cancer recurrence. I don’t know, I just know that my oncologist isn’t saying “you must take this”.

    I suggested that I didn’t recall the side effects being that bad (other than the ear popping sensation, which was later determined to be blood pressure med related). We decided that I’d give it one more try. He suggested that I wait for a time when I didn’t have a lot else going on – so I waited until I knew I’d not be travelling for a few weeks, after our out of town guests left, and between deadlines for the class I’m teaching. I’m glad I didn’t try when I was busy as I ended up with two days of getting pretty much nothing done – and realizing that I cannot live with those headaches. I cannot even imagine writing a dissertation when I cannot hold a thought.

    And so, after being a little anti-hormonal for a few days, I’m back to my ‘normal’ non-hormonal level of sanity. I will still continue with lupron shots (currently at 2.5 month intervals) – at least while it is not producing any bad side effects – the alternative to lupron is an oophorectomy (surgery to remove ovaries). I’m not keen on that – at least not for the time being. Since I don’t carry the BRCA gene, I’m not at increased risk for ovarian cancer. In theory, after 10 years (or less) I won’t need lupron, and will be able to allow my body to go back to whatever ‘normal’ is for a post medically induced menopausal women.

  • Letting go of at least some of the fear

    It feels good when your oncologist acknowledges that what you are feeling is real. Today, I had a six month oncology follow up. This is the first time I’ve gone a full six months without seeing my oncologist. It was a bit of a break through. That being said, for the last two to three weeks, I’ve been having Lupron woes. I’ve found myself overly moody and especially cranky/angry at things that really shouldn’t bother me. It was becoming rather problematic. I’m really glad that when I mentioned it, my oncologist acknowledged that what I was feeling was real, and it was something that we could/should do something about. And so, we’ve moved my Lupron shots to every 2.5 months rather than 3 months. We’ll see if that helps to even out the mood swings/hot flashes at the end of each cycle. If not, there are other options.

    We also chatted about Aromatase Inhibitors (AIs). There is a theory that I should also be taking one. I stopped taking them 6 months ago because I was feeling horrible and couldn’t figure out the cause. I had a weird ear popping sensation that now I know was related to blood pressure meds, but at the time I thought it was that AI. My oncologist suggested that it was my choice – that if the side effects where too problematic, that the added benefit (beyond the Lupron) might not be worth it. I don’t recall side effects being too bad, as the main issue I had was related to my blood pressure meds. So, I’ll try again when I don’t have too much happening. The big concern for me is the bone/joint pain. If the AI increases pain, then it becomes not worth it. I’m already struggling with back pain, so I don’t want to add anything that will increase it. What I find particularly interesting is that for the first time I’m making decisions not out of fear. In that, I am deciding about the AI without feeling like it is a “safety net” that I need. It might help, but I’m also open to the idea that if the side effects suck too much that I am OK with not taking it.

    The not so great news was around likelihood of recurrence. Now truthfully, there is no real way to know. My cancer was pretty unique. That being said, my oncologist sees a lot of people, so I trust that he has a good sense. I finally got up the courage to ask – it wasn’t easy. I’ve wanted to know for a long time, but I just couldn’t ask. I had hoped that I would hear that I was in the group of women who have a greater than 95% survival rate. Unfortunately, that wasn’t the number that he through out. He commented that with ER/PR+ the recurrence rate doesn’t peak at any point, rather it is pretty steady for the first 11 years before it drops off. Then when I asked he through out the number 20-30%. That is actually the pretty standard number, but not the one I was hoping for. I was hoping that because there are others with much higher recurrence risk, that my number would be lower. It certainly causes a moment of pause. And so, with that, I will plod along reminding myself to take one day at a time and reminding myself to keep truly living rather then dwelling on what the future may hold.

  • Lupron woes

    Lupron woes

    I’m coming to the end of my three month cycle with lupron. That is, every three months I get an injection of lupron to suppress my ovaries. This is part of my cancer treatment – hormone therapy. What I am finding is that as I come to the end of the cycle I get really moody. I get really sad, but also get frustrated really easily, and I find myself yelling at idiot drivers when I’m in the car. I am self-aware enough to see these things happening – to know that it is not my body in a normal state.

    I checked in with one of my support groups to learn that this is not an uncommon phenomena. It is something that annoyingly, doctors dismiss as if it is all in our heads. In many ways, all we need from our doctors is recognition/validation that the symptoms we are experiencing are normal. A simple, that sucks, I’m sorry to hear it but there isn’t much we can do about it would work. Not a blank stare and comment about having not heard of that happening before .. because really, it happens. When doctors don’t acknowledge the issue, patients stop reporting side effects. It is known as learned helplessness. If you appear to not care about the experience, then we will stop telling you about it. But this is not a healthy doctor-patient relationship. In a healthy relationship these things get acknowledged.

    Anyways, I’m writing this in part because I’m moody as hell so if you interact with me in the next two weeks you may notice that I’m a little on the crazy side. I’m also writing this because some of my readers are also on lupron. I want to validate for them that these feelings of moodiness are a normal side effect. I have not been that careful of ensuring I get the lupron exactly on time – that is I usually get it a week or two late. My oncologist tells me that is ok – however, if these mood swings are going to be the norm in that period of time then I’m going to be more careful about getting the shot exactly on time. Because the sadness in particular sucks. It drains me. It makes it difficult for me to concentrate and get work done. I really don’t need two weeks of it!

    Feature image: By Fvasconcellos – Own work, Public Domain, Link

  • Quality of life #patientchat

    Quality of life #patientchat

    I stumbled onto #patientchat on twitter yesterday where the conversation was around quality of life. My first reflection was that it was something I didn’t really think about – quality of life wasn’t on my radar before cancer.

    It isn’t that I didn’t have health issues before cancer, just that I didn’t have to undergo treatments that reduced my quality of life. I didn’t have to make decisions where my treatment decisions would directly affect my quality of life.

    When I hear those words “Quality of life” it brings back a very specific memory. I remember walking along the the Guadalupe trail (the path behind our condo) mid-way through my Taxol chemotherapy (the second drug). I was struggling with the side effects of the chemo.

    The drugs had effected my ability to process visual cues, such that I could no longer drive. I also had neuropathy that was causing pain in my feet. And fatigue. Overall I felt pretty crappy. I remember thinking that if this was my life I don’t want to continue treatment. The thought had with it a tinge of fear – the fear that I didn’t have much more strength to continue fighting, and yet I knew it was temporary, and that gave me the strength I needed to keep going. One might think that this sounds a lot like depression, but it wasn’t. It had more do with with quality of life than it did with sadness. I could deal with it because I knew it was temporary. I would get better. I just didn’t want it to be my every day. It was the first time that I truly appreciated the idea of making treatment decisions based upon quality of life.

    Now I find myself in regular conversations about quality of life. These are conversations that people who have never had to face these decisions can understand. They think that they would just keep trucking along, doing whatever treatment was recommended. But the reality is, when you get into it, there is a certain time when quality considerations take over. This is even more the case when it is the difference between a prophylactic treatment (e.g. hormone therapy) to reduce a potential threat (recurrence) versus a known hit to quality of life. There is no one right answer to this choice – and chances are, if you think there is only one answer, then you haven’t been put in this position.

    For me personally, I tolerate side effects for as long as I can. When they get to be intolerable, I try something new – or I stop, I take a break. I don’t beat myself up for it. I don’t look back on the decision either. I remind myself that you cannot change the past – but also that I know at the time I made the best possible decision I could. The side effects clearly got to a point that I could not hack it, I just needed a break. If that turns out to bite me later, so be it. The reality is, that sometimes quality is more important than quantity.

    I have made other such choices in the past. I am reminded of round-six of taxol. I went into my oncologist’s office on Monday and refused to go to chemo that day. I had had enough. I needed a break. He, of course, convinced me to go back on Thursday, and perhaps add one more week after that … which turned into two more weeks after that. Just enough to get me to the time when we could do the first surgery. I don’t look back on that with any regret. I remember just how miserable I was. I remember that walk along the path and the thought that I just couldn’t live like that.

    All I ask is that when someone says “I stopped for quality of life issues” that you appreciate that it is something that only the person experiencing it can truly understand.

    Feature Image CC0 via Pixabay

     

     

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