(Not) Choices

A lot of times, it seems like we have a choice, but we really don’t. Right now, I am currently dealing with three (not) choices, as in, decisions I have to make even though the choice is either made for me or feels less than empowering.

Sugar

Last year, after being diagnosed with invasive breast cancer, I had my first PET test. The tech explained how it works, although at this point, all I can remember is this — an injection of radioactive….something…. along with sugar is injected into an IV. You wait a long time while both travel throughout the body. Any cancer will attack the sugar. The radioactive stuff makes the cancer shows up on the scan. So, essentially, the doctors can see the cancer activity because it’s activated by the sugar. If there was ever any evidence that I should cut sugar out of my diet – that was it. Why would I continue to put something in my body that gives cancer something to feed on?

But unfortunately, this is has been a really hard (not) choice for me. I confess – I eat a lot of sugar, and I love sugar. I’m not talking about candy, which I don’t really eat a lot of, but natural sugars – like fruit, or sugar naturally found in milk, or of course the most evil sugar, carbohydrates (bread, cereal, etc). And I put sugar in my coffee, which I drink all day (1-3 cups). When I want a “treat,” it is sugar – ice cream or some kind of chocolate. And these days, I have a treat daily. Yet, more and more I am thinking about ways I can reduce sugar from my diet. It really doesn’t seem like a (not) choice.

The cancer center has a nutritionist, and I think I will need to call them. I don’t know how to cut or reduce sugar from my diet in a healthy or sustainable way.

Blood Clot

A lot of people in the BRCA community talk about the (not) choice between surveillance and surgery. Do you want your life to be run by a constant schedule of MRIs and mammograms required to surveil, or screen for, cancer when you are high risk, or do you want to have preventative surgery and, presumably, never go through one of those scans again? That decision was mostly made for me back in 2013 when pathologists found DCIS in my right breast, and I (not) chose to have a mastectomy to reduce the amount of breast tissue I had to practically nothing so as to avoid the chance of recurrence (of course, I had a recurrence anyway), and thus the need for surveillance (I also had a hysterectomy and my ovaries removed so as to eliminate the need to surveil anything “down there”). But, that (not) choice did effectively reduce my surveillance schedule to basically nothing.

Chemo, however, did a number on my body, and the port I had in my chest resulted in a small blood clot, which is living somewhere between my lung and heart. This means that I now take a baby aspirin every day, and I am signed up for a lifetime of every-three-months surveillance — definitely not a choice. I am writing this from the CT area of the hospital where I wait for my chest scan. So, even though I’ve eliminated the need for breast and ovary surveillance, I’ve traded those in for heart/lung surveillance. Smh

Baby Boob

When I made the decision to go flat last year, I was left with a small “baby boob” on my right side – near my sternum, there is a flap of tissue that looks like a small breast. It’s visible from under my clothes if I don’t wear some kind of a bra with padding or a binder (which I usually don’t). Dr. Gimbel said to wait and see what happened with radiation because the skin would tighten; the skin under my arm did tighten, but this skin was not radiated – it’s basically in the middle of my chest. It did not tighten or change in any way.

I hate this baby boob. As much as I want to never have surgery again (the main reason I wanted to go flat in the first place), I feel like I might be willing to (not) choose surgery in order to get rid of this thing. I know my chest will never look fabulous naked, but it could look better when I’m clothed (which is, like, 90% of the time). However, I also now have this blood clot, which makes me a bit nervous. Dr. Gimbel says that’s not a big deal for surgery, and that I wouldn’t even need full anesthesia to have this removed. So the surgery is tempting. Yet, am I going to have elective surgery during a global pandemic when I do have blood clot. This (not) choice is really hard.

I did talk to Dr. Gimbel’s scheduler about when I could get this done; right now, I have given her some dates for the end of January. She will call me sometime in December to let me know a date. So, for now, I have time to (not) decide.

The News is a Blood Clot

Dr. Puhalla did finally call. NED – so, yay! However, the radiologist did see a small blood clot in my superior vena cava, the large vein above the right side of my heart where my port was placed for chemotherapy. It is small enough that she’s not immediately worried about it, but its presence is a concern nonetheless (she is also concerned because I did have another blood clot back in October, also the result of an IV, although that one was in a superficial vein).

I am not surprised this port is still haunting me even after it was removed. It’s no secret that we weren’t best friends for the six-month duration that it was stowed in its pocket underneath my skin. Its scars are still visible and painful to the touch. Don’t I look so bothered? (but seriously, the thing was a fucking bother)

Dr Puhalla asks if I have any symptoms from the blood clot – tightness in my chest or shortness of breath. Since she’s said the word “blood clot” I have felt nothing but tightness in my chest. For months now, I’ve had some mysterious symptoms that I’ve chalked up to living my lift post-chemo. I am dizzy almost every time I stand up after having been sitting for a while; I nearly black out when I get out of bed first thing in the morning, having to steady myself on the wrought-iron pole of the foot board. Every now and then, I have the sensation of a light electric shock that comes from my chest, goes up into my neck and then down my right arm into my finger tips, which are then numb for a few seconds. I don’t tell her about these; she is never truly interested in my symptoms or side effects even when she is the one asking about them.

So what now? Her PA called this morning with a phone number for me to call to schedule more scans so they can get a better look at this thing (a carotid doppler). I was able to schedule it for Monday morning. Dr. Puhalla will then decide if she continues to monitor the clot or if I go on medication (low-dose aspirin or a blood thinner). I was so hoping that I’d get to take yet another pill (sarcasm).

I suppose I’m supposed to be thankful that the scans came back NED and not harp on this small hiccup, but I can’t because I’m too annoyed and frustrated that nothing seems to be easy or clean in this whole situation. No one ever says, “That all went fine. Good to go. See ya.” It’s always, “This is ok, but….” I don’t like acting like a victim (or feeling like one), but it is exhausting, this seemingly never-ending string of bad news or good-but-not-great news. I’d do pretty much anything for some time where there is no news; how about just no news at all?

It’s Not Over til It’s Over

It is almost 6pm, and I am watching Phineas and Ferb with my 9yo son while we both eat ice cream after dinner (he eats chocolate with maraschino cherries on top; I eat vanilla with chocolate chips on top). My phone rings, but I hardly hear it. I go to answer but I miss it on the last ring. I don’t recognize the number anyway. When I hear the ding for the voicemail, I read the transcript; I can hear the faint voice of my oncologist:

“Hi Brian, it’s Dr._______ I just wanted to touch base regarding your um recent scan nothing that’s bad I always hate to leave these messages but I did want to ____ just got something that was found with you I am I’m going to be at this number for a while I’m don’t know if it except incoming calls but I’ll try to call you back in about five or 10 minutes um if not we’ll talk tomorrow and like I said nothing that a that’s media concern but certainly do want to review review it with you talk to you soon bye-bye…”

Way to go iphone transcription. The number is not “excepting” incoming calls. Instead, I call about four different numbers at the hospital where I know she’s in her office, trying to get someone to connect me to her, but since she’s not on call and it’s after office hours, no one will put me through.

So now, I sit here, and I wait for the phone to ring. I’m waiting for her to call me back and tell me what’s “not that bad” and “no immediate concern” but worth her calling me after office hours instead of just publishing the test results and letting me google myself into the night.

Ok let’s back up. I had a check-in appointment with my medical oncologist almost a month ago at the same time as my first Zometa treatment (which was rather uneventful). At that time, I told her I’d been having a lot of pain in the area where my right breast used to live and under my right arm – more than I think is normal for having surgery more than a year ago and finishing radiation in March. I also said that I’d like to have scans just to have a baseline now that chemo and radiation were completed – so we would know I am “NED” (“no evidence of disease” — currently the more commonly used phrase instead of “cured” or “in remission”). She said she would not order scans for that reason, but the pain was enough to convince her. So, last week I had a CT and bone scan of my right chest wall. I went alone (five hours in the hospital) because I wasn’t worried. I really didn’t think anything would be found. On the other hand, I had insisted on these scans because I knew something. I knew something wasn’t right in the tightness of the skin under my arm, the pain I felt anytime my son burrowed his head into that space to snuggle, I knew it was more than just scar tissue. But I didn’t think it was anything to really worry about, certainly “nothing of immediate concern.”

So then why am I so worried?

Osteopenia

I have been on Arimidex for over a month now, and the side effects seem to be minimal although rather annoying (my urine smells unpleasant, and more days than not I have a feeling as if I have a UTI – urgency, an itch deep within – but I clearly do not have a UTI). I have not spoken to my doctor about it, but I will at my next appointment.

People with ER/PR+ breast cancer take Arimidex or other aromatase inhibitors in order to inhibit estrogen from being made in the body. One side effect of this is bone loss. Menopause also causes bone loss. I went through surgical menopause in 2013 when I had my ovaries removed, along with a hysterectomy, to prevent ovarian cancer due to my BRCA2 mutation. Those who take Arimidex often also take a biophosphonate, which attempts to stave off bone loss. They also have regular DXA scans to check for bone loss or osteoporosis.

Because I have RA, my rheumatologist wanted to have a baseline DXA scan on file for me when I had my ovaries removed back in 2013. That scan showed no bone loss. A follow-up he requested two years later also showed no bone loss. Last week, I had a DXA scan requested by my oncologist to get a baseline after chemo and as I started taking Arimidex. Well, what do you think it showed?

In 5 years, I have lost 12% of the bone density in my lumbar spine and 11% in my overall hip (most of it to the femoral neck). Both lumbar spine and hip are now considered “low bone mass,” with a diagnosis of osteopenia.

Osteopenia isn’t the worst thing in the world, but I’m not happy about it. I have suffered from pain in my lower back and my hip/groin for years now, had several cortisone injections, taken lots of different pain medications, done physical therapy, etc. I did finally find a medication that has worked for the last couple of years, although I’m starting to have break-through pain now. I will ask my rheumatologist (he prescribes it) for a higher dose when I see him in two weeks.

Osteopenia is not really reversible, but I can attempt to keep it from getting worse, and I can attempt to prevent it from developing into osteoporosis, which I certainly don’t want.

To be honest, what’s most upsetting to me about this is my age. I’m 43 years old. My son turned 9 earlier this week. I need my body to work for several more years. I have already spent a lot of his life in pain or recovering from surgery or cancer treatment. This diagnosis, more typical to a woman in her 60s, confirms that my body, as has been typical for the last ten years, continues to decline at a rate 20+ years faster than my lifestyle. And that’s really fucking frustrating.

Recurrence with Aromotase Inhibitors

I am worried about taking these (which I will start to do after radiation and will continue to do for 5-10yrs). The side effects sound awful, particularly bone/joint pain, which I worry will render me useless in parenting and a lot of other aspects of my life.

According to this article, risk of recurrence is strongly linked to TN status; someone with a tumor like mine (T2N0) has a 19% risk of developing distant (metastatic) cancer in years 5-20 even after taking an AI. Age is also a significant factor (see appendix S5). Unfortunately, I don’t fully understand the chart, so it’s hard for me to know if my age group is at hugely significant risk.

It’s unclear to me if women in this study had undergone any other treatment (chemo or radiation).