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.


Option 1 and Option 2

I am besides myself right now, so much so that I can’t even say this out loud – I am only writing it here. There is a report in my medical portal from the biopsy of my abdomen yesterday. Although there is no pathology, these words are crystal clear:


Now, I think this is actually the coding they use in order to justify the need for the biopsy. There is no pathology, like I said, and lower down on the page, it says:

SPECIMEN:  3 14-gauge core biopsy samples were submitted.

See how that “Findings” section is empty? I think that is where they will put the pathology. But in prior biopsies I’ve had, there is a statement at the top or somewhere — anywhere —  that says something about pathology to be added in an addendum. I mean, it would be strange for there to be a diagnosis this quickly – pathology requires staining of the samples that have to sit over a period of time. It hasn’t even been 24 hours. But there is no mention of an addendum to be added. And, “DIAGNOSIS: BREAST CANCER” is not what I like to wake up to first thing in the morning. I emailed Dr. McAuliffe. My guess is she will tell me exactly what I’ve just written. Still, I am officially terrified.

Second, after my meeting with Dr. Gimbel yesterday, I am torn about what kind of surgery to have. Here is his after-visit summary, which does a surprisingly good job or relaying our conversation:

Considering 2 options:
– One is wide local excision alone through an elliptical incision laterally on the right breast. I drew out a radially oriented ellipse overlying the mass and took a photo to provide for Dr. McAuliffe for recommendations on how to oriented designed this excision, taking the flap into account.
– The other option would be wide local excision in combination with removal of her bilateral breast flaps. She feels strongly that she does not want any more surgeries and is concerned that radiating the right reconstructed breast will significantly alter its appearance, creating asymmetry and potentiating the need for additional revisions of her breast reconstructions. She is hoping to be done with surgery on her breasts as she has gone through a lot already.

So, yeah – Option 1 (remove the lump) or Option 2 (remove the breasts). To add a little more detail to Option 1, Dr. McAuliffe’s excision will already remove a significant portion of that breast (probably a bit more than 1/4 of it). Then radiation could shrink it even more. I am not a very materialistic person – anyone who knows me will tell you that I probably should give a lot more shits about the way I look (put on some makeup? comb my hair?) – but I am pretty OCD about a lot of things, and I know that having two very different breasts will drive me absolutely crazy; I can see wanting to have a second surgery to even things out. But this surgery coming up will be my FIFTH related to this situation, and I am absolutely not having any more surgery after this unless it is to save my life. So I have to make a decision now that I’m going to be able to live with.

Of the two breasts that Dr. Gimbel made for me in 2013, the nicer one is the one that’s going to get wrecked here. The one that will remain in-tact has always had this weird pinched skin around the aureola that has always bothered me a bit. I think I’d rather not have any breasts at all than have one breast I never liked and one that’s going to be half the size of that one. Of course, the key word in there is “think.” Because I don’t really know; even though the idea of living with a flat chest is kind of tempting, I’m not sure what the actual skin will look like, and it could be a scary mess (he’s also said it could be concave – not necessarily flat – although he’d do his best)But once he takes them off, there’s no going back. I do know Dr. Gimbel’s work, and I am pretty confident he’s going to make sure it looks good. Still, this is a really hard decision, and despite talking it over with my husband last night, I feel like there is no one who can help me make it.

This afternoon, I meet with the radiation oncologist to discuss if there is a radiation therapy benefit to one option or the other. Then I will need to make a decision so we can get this surgery scheduled already.