BC Becky

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

Tag: decisions

  • Knowing what to expect

    “In my experience, fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. When you feel helpless, you’re far more afraid than you would be if you knew the facts. If you’re not sure what to be alarmed about, everything is alarming.” (Chris Hatfield in “An Astronaut’s Guide to Life on Earth”).

    As the details of tests come back, you are presented with choices. I’ve noticed that all choices seem to come in pairs. You make one choice and then you are presented with the next choice. The quantified data tells you what choices you have, that is, it narrows things down, but the qualified self is who needs to make the decision. So, at times, it is the gut that decides, based upon a bunch of other information.

    Today we got a couple of interesting lab results back. First, the HER2 FISH test came back negative. This is a good thing, as the HER2 treatments aren’t that great (not that any of the treatments are that great). What it means is that the type of cancer I have is the one they understand the most.

    The MRI also showed something interesting. Rather than having a large 4cm+ tumor in my left breast, I actually have two smaller tumors (2cm and 3cm). I’m not completely certain how to take this information, as I now have three tumors. However, the treatment for one is the same as the treatment for the other – so from a treatment perspective nothing changes – and I don’t have a ‘big’ tumor. The MRI also showed no indication of node involvement – which means I caught it early.

    Decisions come in pairs. The first choice is chemo first or surgery first. The next choice depends on the first, but either way, when it comes to surgery I will need to decide on whether I want a mastectomy or a lumpectomy plus radiation. Whatever I do one side, I’ll do on the other – symmetry matters to me.

    After confirming that chemo was advised regardless of surgery choice (increased prognosis by 10% in cases similar to mine), and the chemo before or after surgery didn’t make a difference in the prognosis, but could make surgery easier, the first decision I made was to go with chemo first. My gut had been telling me this for quite some time. I just feel like this thing came out of no where and is spreading, and the only way to catch it systemically is with chemo.

    Of course, that wasn’t the only decision – because every decision leads to another decision. Now I need to choose between two chemo regimes. The quantitative numbers say they have the same outcomes (they did some clinical trials on both regimes and neither was preferred over the other).

    The two options look something like this:

    • option 1: doxorubicin and cyclophosphamide followed by paclitaxel (1 treatment every 2 weeks for 4 cycles, followed by one treatment per week for 12 cycles) – AC -> T
    • option 2:  docetaxel and cyclophsophamide (1 treatment every 3 weeks for 6 cycles) – TC

    They are given at different intervals, but I’ve decided that the logistics of intervals is not an important variable for me. Some people chose one over the other based upon convenience of treatment (the latter option requires less visits and less infusions). So now I must choose based upon side effects, and which I think will be easier / better for me.

    After the doctors appointments, we went for a walk around the arboretum. We found the perfect tree for my picture series. It is an old eucalyptus (huge tree) which hasn’t yet shed its bark for this season – so it is showing older growth now that as the weeks pass shall shed to show the underlying new growth. We also happened across the coolest giant cactus garden. I’ve never seen cacti so large! And finally, we sat in the shade on the back of Stanford’s mausoleum for enjoy a picnic lunch.

    Photo Jun 23, 12 39 23 PM Photo Jun 23, 12 36 07 PM Photo Jun 23, 12 36 49 PM

     

  • Double-mastectomy and chemo

    If I’m repeating myself, I apologize. One thing that I’ve noticed over the last two or three days is that my short-term memory sucks. I cannot seem to hold thoughts for that long, and I am very often walking into a room having completely forgotten why I was there. Worse, is that I sit in front of the computer intent on doing something, then have no clue what that was, and am easily drawn in many different directions.

    Today we had a meeting with the surgeon and then oncologist at PAMF. I also had a phone call from the social worker, but I didn’t get a chance to talk to her because I was driving at the time.

    There isn’t exactly a plan for treatment yet, just some general recommendations based upon the known pathology. There is a key test (the HER2) that is expected early next week. The preliminary HER2 was inconclusive, and we need to know if it is positive or negative, so they send samples off to a different lab for further testing. To simplify the discussion with the oncologist, we only went over options that made sense for HER2 negative (which is 80% likely).

    The surgeons recommendation is a double-mastectomy. I had concluded this as well when the right came back positive, as I have two separate cancers in both breasts. What is interesting here is that prior to having cancer, I always thought that if this happened to me, I’d want it out immediately. Now that it has happened, I’m not as certain. Yes, I want it out, but the decision over chemo or surgery first is an interesting one. I have decided that I will not do reconstruction. This makes the surgery much simpler. Reconstruction brings with it a lot of risks, and frankly, I’d be happy to never have to wear a bra again! My nipples have never been a source of pride, and with reconstruction, I’d likely look all or most feeling, so if they are not a source of sexual pleasure, then there isn’t a lot of point to keeping them. Especially when nipple sparing surgery is both more complex and can potential increase the chance of re-occurance. So, it is logical. I like logical. And in some ways it is a relief to have the decision made.

    So far, both cancers (left and right) have the same characteristics (HR-positive and PR-positive). Given the growth rate of the left, chemotherapy is recommended. The chemo would be the ACT type (assuming HER2 negative). Don’t know too much about that yet, since we just learned it today, I haven’t looked it up yet. The chemo could happen before or after surgery, so this is the big question right now.

    Now if I am HER2 positive, that means that chemo will happen first, as there are some HER2 blockers that can only be given before chemo. There are complexities with HER2 – including an increase mortality rate – so if you are inclined to pray, pray for HER2 negative on both sides.

    One thing that I’ve learned is that statistics only mean something before you get a diagnosis. They provide hope (e.g. 80% of breast cancers are HER2 negative), but they mean nothing once you have received the diagnosis. It is no longer relevant what the statistics are about HR-positive and PR-positive. Both cancers are positive, so for me it is 100%. Statistics only matter for the unknown future, not the known present.

    Having two cancers is not so common, but it certainly made the double-mastectomy question easier. If I only had one cancer, keeping the second breast would have been expected (unless I’m BRCA positive – but that information won’t be available for a couple of weeks – we are hoping for negative here too). I would have then had a harder decision regarding reconstruction. I would have always wondered if keeping the right breast would mean an increased risk of occurrence, and it would mean mammograms every 6-months on the right breast, and constant worry. Plus it would have been harder to figure out clothing and all those complexities. Yes women do it, but I would have found it difficult – a constant reminder. So, the double-mastectomy was perhaps one of the easier decisions.

    Tomorrow we go for a second opinion at Stanford. It is also a chance to see the Stanford Cancer Center and decide if it is a better option for treatment. The folks at PAMF saw no reason that I would get any different treatment at Stanford given what we know now. The only thing that might matter is if there is a clinical trial that I qualify for at Stanford that isn’t available at PAMF (the PAMF oncologist didn’t know of any). Stanford in some ways, Stanford has the coolness factor – I could say “I went to Stanford” and I’d wear the sweatshirt with pride. But it is also further away from where we live. At least 20 minutes further, and parking costs $12 (parking is free at PAMF and most of the locations are within 5-10 drive from Scott’s office and 20 minute drive from home). This all adds up. And so far the care at PAMF has been superb. So, although I might have been leaning towards Stanford late last week, I’m now leaning the other direction. But, tomorrow will tell. I may get to Stanford and feel that everything is right there … I am happy to know that I have choices, as choice means that I have some sense of control (I’m a control freak) … and with so much of this, I don’t have any control. So, I’ll take what I can get!

    And now, it is definitely time for a good nights sleep …

     

  • 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.

css.php