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).

Radiation Oncology Notes

Notes from Appointment with Dr. Vargo

My questions:

  • Trips planned first week of Feb and end of March (exactly six weeks in between the two trips); hoping to start February 10th and end March 20
  • Time – would like to come after swimming (8:30-9:30) in morning – so, 10am?
  • What if I miss a day?
  • Will effects (eg fatigue) be cumulative? (is it reasonable to go to Milwaukee in March after six weeks of radiation?)
  • Skin effects – how can I prevent that? MepitelMiaderm? (can you prescribe either of these – they are expensive)
  • Swimming – ok to do? How will that effect skin?
  • Tattoo? Required?

Answers from nurse:
Might have to wait 4 weeks to begin radiation; will have to do CT scan to determine when we can start it; can swim as long as I have no open skin; will not be able to pick a time of day for radiation (will be assigned a time – after first week can possibly adjust to a time that I want); will need tattoo if I’m going to be swimming because the stickers they use will probably fall off otherwise

Answers from doctor:

  • Wait for any breast surgery 6 mo after finishing radiation
  • He will make the 6-week schedule work! – if I have to pause at any time, can do two in one day or can make them up after March trip to Milwaukee
  • Mapping (CT scan) last week of January
  • Treating both chest wall and lymph nodes
  • Low risk of heart and lung damage, low risk of lymphedema
  • Pure aloe or aquaphor for skin (he doesn’t think mepitel is necessary)
  • He says start to plan for tattoo (talk to people during appointment about that)


Sabbatical Side Project

I’m on sabbatical now. So, as a fun side project, I will use the information presented in this secondary article and its primary research to predict whether my cancer is going to come back, despite the chemotherapy I am 3/4 of the way completed and the radiation therapy I will begin at the end of January.

I am particularly interested in what my MRI reports say about tumor heterogeneity, and if there is research out there related to BRCA tumors and heterogeneity.

“high tumor heterogeneity at the time of diagnosis — meaning a high diversity of cells — could successfully predict a cancer recurrence.”

According to the primary research, “60 radiomic features of texture and morphology were extracted” to create a “signal enhancement ratio (SER) map” of a lesion (invasive breast cancer).  Using this information, the scientists could determine how heterogeneous a tumor was – the more heterogeneous, the more likely to recur. So, all I need to do is figure out from my reports (and any other info I can get from my doctors), the qualities of my 60 radiomic features in order to determine how heterogeneous my tumor was.

Why would I want to know this? Well, if I can figure this out (or if my doctor can, which she probably can, but she probably won’t want to – a whole other story), then I would know if I should bother taking between 5-10 years of aromotase inhibitors, which, I’d really like to avoid if I can. If the SER map shows that my tumor has low heterogeneity (and is thus unlikely to recur), maybe I would consider not taking those, or at least not taking them for ten years, since the side effects are atrocious.

Still thinking on this.

Extravasion Invasion

I haven’t written in a while, and I don’t have time now. But I do want to “log” something —  a prediction — and this is where I typically do that. Tomorrow is my third chemotherapy. During the first one, I did not yet have a port, so I was given Adriamycin through a vein in my hand near my wrist (not typical because it is an irritant, it can really do damage to veins, and if it were to leak from the vein it can do extreme damage to surrounding tissue). It was pretty painful through my entire forearm, but the nurse was good at giving me breaks and wrapping my arm in a warm blanket, which somehow did help.

After my second treatment (in the port), I felt a bump under the skin on my wrist about the size of a small marble. I thought it was from an unsuccessful blood draw I’d had that morning. Now, one week later, there is another marble about two inches higher up on my arm than the first one and the entire area around and between the two feels bruised, although there is nothing visible there.

I figured the Adriamycin infusion that first week went fine because I didn’t have any strange symptoms, and surely I would know if there were poison leaking into the tissue into my arm. But, after doing a little research this afternoon, I’m ready to call it: Adriamycin extravasion in my right arm. Doctor will diagnose it tomorrow when I go for my third infusion. Although it’s rare, I’ve beaten worse odds.

Unfortunately, I haven’t been wrong about any of these predictions yet. I really fucking hope I’m wrong about this one.