BC Becky

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

Category: Hormone therapy

  • Coming up for air

    Coming up for air

    I feel like I’m finally coming up for air. I’m starting to get my energy back. I didn’t realize how much energy I didn’t have until I started to feel better. Now I’m still hesitant because I’m not sure how long this feeling better will last.

    My oncologist agreed that I could delay my hormone therapy for a month or so. I’m also off of the first round AI for six months. We’ll see if that is what was making me feel so fatigued. I’m cautiously optimistic. My primary care doctors office (another doctor on the team) has referred me to a neurologist. His comment was that if the brain is OK and you still get headaches then the next step is to look at ways in which to control the headaches. He figured talking to a neurologist about hormone therapy might give me some insights into ways in which I can help my body cope with the low levels of estrogen.

    I already have a ridiculous number of doctors on my care team – I’m also adding a new dermatologist to help treat my dermatitis herpetiformus (DH – crazy itchy rashes caused by celiac disease). After my last exposure while I was traveling a couple weeks ago, my rashes got bad enough that I reached out to my dermatologist asking for new medications to help control them, and he has referred me to another dermatologist that specializes in that area. The subspecialities are a bit crazy. Do I really need three different dermatologists?

    Coming up for air also means that I’m exercising more which is one way to fight off the effects of fatigue. I’m swimming, hiking, and now biking. My swims go for about 45 minutes, with the hope of getting back to an hour. What usually stops me is muscle cramps. I’m not quite back up to swimming a mile but I’m getting there. When I walk or hike it is about 6-7 km. And I successfully changed the tire on my road bike, so I was back on it this week. I road almost 18km. My arm/shoulder wasn’t completely happy with the bike ride, but that in part is because it has been a long time since I’ve ridden that bike. I’m happy to be back on it, and hope to ride it a lot more in the coming weeks. I was hoping to do a short sprint triathlon at my gym, but they ended up cancelling it. So, I’ll stick to my weekly triathlon, getting back into exercising for 2-3 hours per day with one sport per day.

    Feature image CC0 Licence downloaded from Pixabay.

  • Treatment fatigue

    Treatment fatigue

    Treatment fatigue – it is the only way I can explain how I’m feeling. You would think that someone who has gone through cancer treatment would want to do everything they can to help reduce the likelihood of the cancer returning. I would have thought that was how I would feel. It is funny how when something like cancer happens you don’t feel how you thought you would feel.

    I’m definitely going through a bout of treatment fatigue. The week after next I’m due for my next round out Lupron and Prolia shots. On Monday I’m going to ask my oncologist if I can postpone them a month. I have not been feeling well for too long, (almost two months now) and I really just want to feel normal for a little bit before I go back to treatment.

    When it comes to breast cancer surgeries, the research talks about treatment fatigue. If you do reconstruction after chemotherapy you can end up with breast cancer related surgeries that span two to three years. It is a long drawn out process and many women get tired of the surgeries before they have completed the process. I get that.

    The idea of hormone therapy for 10 years is exhausting. I’m not even at year 2 so to imagine that my life for the next 8 years will involve a shot every three months is tiring. The alternative is a surgery to remove my ovaries – but I’m also in treatment fatigue on that front too. I don’t feel the need to remove a body part unnecessarily. I don’t know what the long term impact of that will be.

    I expect that if I had a few weeks of feeling better, that I’d be ready to jump back into hormone therapy – knowing that it does reduce the risk of recurrence. It doesn’t prevent it. There is no way of knowing if it is making any difference in me. Statistics are a challenge that way. It makes a statistical difference but it doesn’t necessarily make an individual difference. When you are the individual in question, sometimes that statistics are not relevant. I like to say, it is the statics of one that matters. In my case there are no statistics. My cancer was weird. I had a lot of it, some of it aggressive, but it had not spread outside of my breasts. So I also caught it early – but again, that doesn’t mean that it won’t come back – there is no way to know. Only time will tell.

    And so, with that, I fight a bout of treatment fatigue and hope that after a few days of rest I’m feeling better and ready to jump back into it all. Some people use the battle metaphor with cancer – not sure I like that one. In some ways, I like to think of it more as a race. The primary treatment is a series of sprints, but the long term is the marathon – or more like a series of marathons – or maybe it is more like the ultra running races where it is more like running 100 miles and this is done over and over again. Ten years is a long time to be in treatment. When I can only plan 3-6 months in advance, I just cannot see that far – I cannot see the light at the end of the tunnel yet – so I’m hoping for a little sky light to open up and inspire me to keep on running.

    Feature Image CC0 Public Domain

  • The costs of treatment

    The costs of treatment

    I’ve been thinking at lot lately about the costs of treatment. For the moment I have good insurance, so I can see the bills but I don’t need to worry about them – at least not right now. Each year our medical insurance changes, things get eroded, what was covered last year may not be covered next year. The systems in both Canada and the US are designed to bankrupt you before they allow you to access your care on compassionate grounds.

    I’m technical finished treatment, but in reality I’m not. It is something that many women with ER+/PR+ breast cancer find hugely annoying. After the dose dense chemo comes hormone therapy. The therapy can be one pill a day for 5, 10, or more years. The younger you are the more complicated this gets. The first choice therapy failed me. Patients don’t fail treatments, treatments fail patients – language matters.  The second round option is quite a bit more expensive and is inconvenient. The daily pills are cheap and easy to take. But because of my age I also need to do ovarian suppression, which luckily for me is a shot once every 3 months (some people do it monthly). For this intramuscular shot my insurance company is charged $36,000. Then every six months they add on an additional medication to help rebuild my bones as the daily pill can cause bone loss. So every six months another $10,000 is added to the bill. So that is $92,000 in treatment per year. This does not include all the doctors visits. This treatment regime is currently expected to run for 10 years – although it seems that the treatment options change, and there is some talk of extending the hormone therapy even longer for some people. Since I had three primary tumors – all hormone positive – I’m an anomaly.

    It bugs me but this cost of treatment has got me thinking about whether I should have an oophorectomy (removal of ovaries). That would mean I could skip the shot every three months. If I had a BRCA mutation, then an oophorectomy would be a standard of care, because in addition to increased risk of beast cancer, BRCA also brings a significant increased risk of ovarian cancer. But that isn’t me. So for me the only reason to remove my ovaries would be cost and convenience. Neither of those things seem like a valid reason to remove a body part. But the idea keeps crossing my mind as we look to the future. Can I maintain the shots every 3 months? To add to the issue the last shot I had hit a nerve or something in my gluten, which is now being treated with physical therapy. It has been almost 2 months since that shot and I’m still feeling it. Fortunately the first two times I didn’t have that problem. So, I’m hoping that it won’t happen again, but it is weighing on me. I’m hesitant about getting the next round of shots. Wondering if I can delay them a little. Wondering if they are really necessary. Wondering if it makes more sense to remove my ovaries and avoid the shots. I’d still need the every 6 month bone strengthen shot but that is not intramuscular.

    At the survivorship appointment we had with the nurse practitioner, she emphasized that hormone therapy was just as important as chemotherapy in reducing the risk of recurrence. For many women surgery and hormone therapy are their only treatments. It can be very effective. But it isn’t without its side effects, and it isn’t without its inconveniences and costs.

    For now I’m slogging my way forward, one pill/shot at a time.

  • Fear and UTIs

    Fear and UTIs

    First I want to warn all my readers that this article is going to talk about female stuff. It is going to talk about urinary tract infections (UTIs) and other things related to female body parts. If you don’t want to read it – turn your gaze now …

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  • Hormone therapy update

    Hormone therapy update

    I thought it was time to give an update on my progress with hormone therapy. Fortunately, there is not a whole lot to say. This week I added the denosumab shot (Prolia). The purpose of this shot is to help my body begin to rebuild bones, since I have some reduced bone density. The issue could have been caused by the chemo, by celiac, and can be worsened by the aromatase inhibitor.

    Ever since my oncologist described the bone building process, I have imagined by body filled with these little scrubbers (osteoblasts) that eat up my bones. They were out of check with the calcium that was needed to rebuild the bones. So with every ache or pain in my spine, I imagined little scrubbers working too hard sweeping my bones raw. It is a bit of a funny analogy.

    The denosumab reduces the scrubbers, so that calcium can start to rebuild your bones. One concern is that you need to have enough calcium flowing in your blood to make up for the sudden uptake by your bones. To ensure that you won’t have trouble, you do blood tests in advance of the injection validating that you have enough calcium in your blood. Because of this, the injection which is subcutaneous, must be given by a nurse who validates your labs before giving it to you. Since I do it at the chemo infusion center, they use the same checks and balances they do with chemo, having a second nurse validate with the first that you are who they think you are and your medical records line up with the prescription they are about to give you.

    With that, I’m now on officially on the full regime of hormone therapy. I get a shot every three months to block my ovaries (Lupron) from producing estrogen. This also reduces the signals sent by the pituitary glad telling the ovaries to make estrogen. I take a daily pill (anastrozole) that prevents my body from converting fat to estrogen and blocks whatever production was left in the pituitary. Finally, every six months I get a Prolia injection to help my body rebuild bones which is one of the side effects of not having any estrogen in my system. After about two years, we will do another bone scan and validate that the osteopenia has been reversed.

    I’m happy to report that so far so good. I haven’t noticed any significant side effects from the Lupron, anastrozole, or Prolia. The whole process does have a lot of moving parts. The goal is to prevent my body from producing estrogen because my cancer (all three tumors) were more than 95% estrogen receptor positive (one only needs greater than 10% to be called estrogen receptor positive). This means that the primary fuel for all of my tumors was estrogen.  Blocking it, reduces the risk of recurrence (or if it is inevitable, it delays it – we just don’t know what causes some breast cancer to spread and others not to, so we cannot say it will prevent it). I’m just happy to have found a combination that is currently working for me. I say currently because it could change. In six months, a year, two years, my body could decide that it doesn’t like the anastrozole and start giving me headaches again.

    I find the name ‘hormone therapy’ an interesting choice because what it is really doing is blocking hormones. In many ways it is really anti-hormone therapy.

    The one side effect that I am noticing is a change in my sleep. I’m finding that I’m not able to sleep nearly as much. In many ways this is a good thing. It has meant a shift in my lifestyle – one which I describe a little in my post about sleep. For now, this change is working for me.

    So far so good.

  • Next steps in hormone therapy

    Today I started with the aromatise inhibitor (AIs). It is the next step in hormone therapy. I’ve been doing ovarian suppression since October. I delayed the start of AIs in order to ensure that I was only introducing one new drug to my system at a time. I don’t like to change too many things at once, as it makes it difficult to see which drug is having which effect. And so, when I realized that I’d have a two week window of stability on my other meds, I figured this is a great time to start.

    I warned my husband that I might get bitchy. It is one of the potential side effects. I’ve talk to some women who have had no side effects – so I’m crossing my fingers. There is some hope that since my body has had a little time to adjust to the ovarian suppression, that adding the AI will not be too much of a hit. My body so wants to have estrogen, but alas, so does the breast cancer. So today additional wellness pill is Anastrozole. I am writing today mostly so that I have a log of exactly when I started.

    10 years is a long time to be on a medication … so 9 years and 364 days and counting (maybe I’ll add a count down clock to my blog) …

    [wpc_countdown targetdate="2026-01-12"]

     

  • Balance and counter-balance

    I’ve been reflecting lately about how I’m no longer afraid of cancer recurrence. It is no longer something that I worry about. It isn’t the first thing that comes to my mind with every ache and pain.

    This is one of those good-thing bad-thing things. You see, since I am no longer worried about cancer recurrence, I question the need to be on hormone therapy. I can totally appreciate why there are issues with women complying with hormone therapy.  I question the need to continue with treatments that might make me feel sucky. It is a lot easier to put up with the treatments when you think of them as a safety net. When you consider that they are what will help prevent recurrence.

    So, a little worry kind of needs to be there. That little worry needs to be just enough to motivate me to continue down the path of hormone therapy. Without that little worry, the treatments feel like torture for no benefit.

    And so, I feel the need for a little balance and counter-balance. I need to feel like the hormone therapy is doing something. Fortunately, I will know that one aspect of it will be doing something – that is, the once every 6-month Denosumab shots – because they will be treating my osteopenia (low bone density). Between the gluten-free diet, additional calcium supplements, and the denosumab shots, my bone density should return to normal (crossing fingers).

  • Treatment update

    I mentioned in a previous post that in the new year I’ll be starting a new treatment to help reduce the risk of breast cancer recurrence. Since then, hubby has found for me a link to the studies that were presented at the clinical cancer conference in San Antonio. Thanks go to Anne at Chemobrain Fog for posting links to the presentations. I’m going to post two of the video clips below.

    It will be interesting to see what my insurance says about the denosumab. They made me do the injections of Nulasta (at $5000 per shot, I’m amazed that they trusted me to do them myself). Denosumab is similar in that it is a subcutaneous injection. We shall see. Given that I have low bone density (osteopenia), my insurance should cover the injection.

    And so, in the new year I will begin a new breast cancer treatment regime that will also help to address issues with bone loss (which in part could have been caused by undiagnosed celiac disease). What I don’t know is when do I get a follow up bone density scan to see if it is working? Likely not for 6 months or a year – maybe even longer.

    Crossing my fingers that I tolerate the new Aromatise Inhibitor and denosumab well. It means that treatment to reduce recurrence includes Lupron once every 3 months, Denosumab once every 6-months, and a daily Aromatise Inhibitor pill. These are part of my “wellness” treatments!

  • A little bummed out …

    I came back from my last oncologist appointment (Monday) feeling a little down. The visit was good. We made a solid plan of action that addresses both breast cancer prevention (hormone therapy) and treatment for osteopenia (low bone density). I was fine until I asked the question “so how long would I need to be on the hormone therapy?” … the answer I got back was “for you, 10 years”. So I’m bummed. I had hoped with the switch aromatase inhibitors that it would drop down to 5 years.

    The good news is that the latest research (of about two weeks ago) is showing that Aromatase Inhibitors (AI) plus denosumab once every six months decreases the risk of hormone positive breast cancer recurrence. Upon hearing this, I tried to look it up. I didn’t find anything. However, I decided early on that I trust my oncologist. He is the expert. He is the one going to the academic and clinical practice conferences. And so, I now have a plan. I’m still taking Lupron once every three months to ensure that my ovaries are not producing estrogen, then in the new year (actually February) I’ll begin taking an aromatase inhibitor which stops my body from converting androgen to estrogen, reducing the amount of estrogen in my body even further. It looks like Breastcancer.org have recently updated their page on aromatase inhibitors as it now references a 2015 study. I’ll add in the denosumab once I’m stable on the AIs and once my foot has finished healing (In January I’m having a minor surgery to clean the arthritis and bone spur on my toe).

    I’ll be adding one thing at a time, so that I can figure out which has side effects for what. I’m encouraged that the AI is said to have less side effects then tamoxifen. I have very few / minor side effects with the Lupron. I’m just hoping I don’t end up with crazy headaches like I did on tamoxifen. That was not fun and truly began to drive me crazy.

    I try to look on the bright side. I try to think that this is my ‘protection’. I feel a twinge of guilt because I have something that provides that protection and yet I really don’t want to have to take it – unlike a friend who has triple negative breast cancer and was recently diagnosed with metastatic breast cancer – at least I have something that might provide some protection. However, I also think it totally sucks to have to be on medication for 10 years. It sucks to be thrust into enforced menopause before my time. It has me kind of bummed out …

  • Exhausted … and still learning to navigate conferences …

    Yesterday I attended the Medicine X Ed conference up at Stanford. I had planned on attending all day today too, but by the time I got home last night I was exhausted. My body could not handle another full day (12 hours of conferencing when you include the drive time to and from site). Then I thought back on the last couple of days and realized why I was so tired.

    Monday I spent too long at doctors appointments. Mostly this was a screw up at the Infusion Treatment Center. I’m trying out Lupron (ovarian suppression) in small doses to see how my body reacts to it. This is the next stage of hormone therapy to help prevent the breast cancer from coming back. Because it was not a typical dose, the main campus pharmacy didn’t have it. Rather, they had some at the South Bay campus – and so, after wait more than 30 minutes, I hopped in the car and headed down to south bay. It turns out they were not exactly ready for me when I arrived, and I spent another 2 hours waiting for a needle that takes about 2 seconds to give.

    Tuesday started with an early morning physical therapy appointment for my back (note, they don’t do physio therapy, they do physical therapy – it is mostly targeted exercise and stretch). I went to South Bay as I had a derm appointment there first. In preparation for the derm appointment I’d eaten a little gluten on Sunday and Monday. I thought I had one blister which wasn’t in an idea location for biopsy. Sitting in the chair, talking with the derm, showing her my various rashes which had gotten much worse in the last two days, a light went on. The rashes were caused by the gluten – dermatitis herpetiformis. This was why I’d eaten the gluten in the first place. So, she did a biopsy of a couple of points on my stomach – 4mm skin samples, which are now stitched up. I need to return in two weeks to have the stitches removed. After the biopsy (which again, meant I was in the derm office for 90 minutes instead of 15), I went upstairs for my second Lupron injection. This wasn’t as long as the last time, but still not fast – 30+ minutes.

    So, the first two days of my week were spent mostly in health related appointments.

    Wednesday I was up early so that we (my friend Stacey and I) could drive up to Medicine X and arrive before everything started. I had my third Lupron shot just after lunch. This time I was in and out of the ITA in less than 10 minutes.

    The conference yesterday was great, but it was also exhausting. There was a bit of a mix up at lunch, which was already planned to be late in the day. I didn’t bring enough snacks. There were no gluten free snacks other than a little bit of fruit, which was snatched up quickly and not refreshed for later breaks. The conference organizers were very responsive to the oversight with catering, but still, it caused an extra challenge to the day.

    And so, I had to make the call to skip out on the morning sessions of the conference. There was one session I really wanted to attend, so I’ll try to catch up with the organizers of that session at lunch (thank-you Twitter for giving me a way to reach out to the presenters). I’m suffering a little from FOMO (fear of missing out), but the reality is, I need to take care of myself. I don’t have the stamina that I used to have. I cannot figure out whether the fatigue is caused by the gluten, the lupron, low blood sugar from not eating right, or just plain doing too much).

    The good news is that I seem to be tolerating the Lupron well, which means I can move onto the next step for hormone therapy – which sucks, but for me, it doesn’t yet suck as badly as the tamoxifen.

     

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